A Breast Cancer Diary with Kathleen Moss
Kathleen Moss, a lobular breast cancer survivor, DCIS educator and flat advocate, tells the stories of other breast cancer advocates who have gone through similar decisions around body changes, treatment and surveillance options and lifestyle improvements in the face of medical menopause. We hope some of these stories of the many ways of surviving breast cancer will resonate with you.
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Reflecting on Integrative Oncology
04/20/2025
Reflecting on Integrative Oncology
Just a quick episode reflecting on Heather's story and the difference between "functional" or "integrative medicine" and "alternative" medicine. Subscribe on: - Join my Newsletter List here: Heather's web site is: https://heatherjose.com/ and her podcast is here on YouTube at: https://www.youtube.com/@ImStillHereCancer/videos Kathleen does zoom based peer navigation/mentoring sessions now. Schedule a session here for a sliding scale of $35 to $95 per hour long session: https://kathleenmoss.simplybook.me/ Transcript: Those of you listening on the day that this episode is released, happy Easter to you if you celebrate Easter. I'm just here again just me reflecting on some of the things we talked about in the last episode with my guest, Heather Jose. Her episode was packed full of controversial issues and I'm just gonna cover a couple of them today. And also wanted to give you a heads up that I may not be putting out episodes in the next couple of weeks. I've had a couple of guests cancel and have to reschedule, and then my dad just passed away this last week, and so I'm not able to reschedule with them soon. I do still intend to put out, um. Maybe three or four or more episodes before I take a break for the summer though. So I will be back at some point probably in May and not in April. Um, but don't worry, I haven't finished this season quite yet. So just to get back to last week's episode and some of the topics discussed with Heather, I wanted to talk about her complimentary or integrative, uh, approach to her oncology, the fact that she worked in tandem with both the conventional system and the lifestyle medicine system. This can be really confusing for folks who aren't familiar with. The world of functional medicine or even nature paths. There are so many different types of cancer experts, so-called experts in the world, and some of them are, are highly, you know, board certified and backed up with lots and lots of education and others of them may not be. All of them claim to have some interest in some kind of research, or usually they do, but not all of them have really solid research behind their practices, and so this can be really confusing and really expensive and kind of scary for the typical patient to explore. I have a background, personally, I'm a functional nutritionist, so I have a lot of experience with telling these kinds of schools of thought apart. And unfortunately in cancer there's a lot of quackery. I think there always has been. Throughout history with cancer. There's a lot of, um, people making false claims or really, really naive claims without a lot of research behind them. And this. Movie that we talked about that Heather and I were talking about briefly in the last episode that just came out on Netflix recently called Apple Cider Vinegar is a really good example of a couple of different really scary elements, um, in this kind of shady practice. In the movie Apple Cider Vinegar, which I'm not sure if you'll be able to watch as a cancer patient. For me, it was excruciating. It took me a couple of months to get through this very short series of episodes because it was just so painful and uncomfortable and cringey for me to watch. Just, just a really unfortunate story that seems to be somewhat true, um, that takes place in Australia. But, uh, there were two elements that were disturbing. One was that this one character in, in the film, which the film kind of was focused on, was completely lying. She was a sociopath and coming up with dietary measures for people to fix or. Cure their cancer through As someone who had never had cancer and was claiming to have cured her own cancer, that really never existed. Of course, that is a bizarre and disturbing story to watch for anyone. I. But then there were a couple of other characters in the movie that were kind of,, carrying on a claim for themselves, and they did have cancer. they were looking into all the alternative to conventional medicine options that were out there in the world. There were things in Mexico and South America and, um, different in indigenous practices and. , it didn't go into all the details of all of them, but the really poignant part of the story was the death of, of one woman who became kind of a thought leader and influencer of other cancer patients. And all the while her cancer had been progressing and she was denying that. And, it's a really good wake up call for those who are seeking the alternative kind of solution to cancer in in our world right now. I think we need to have that kind of sobering reality brought to us every once in a while, and yet people like my guest, Heather Jose, do feel like lifestyle changes, diet and exercise and stress. Related and sleep related changes in their lifestyle have made all the difference. So there is, there is something to the lifestyle end of things. And I think for me anyway, in my, in my research and my exploration, I have found that functional medicine is the best kind of mediator of the two, um, of natural and integrative and complimentary medicine. Approach to cancer as well as medical, conventional medical, because most functional doctors are actually MDs. They're, they're fully trained in the conventional system, and then they go beyond that to get trained in the lifestyle medicine, complementary or integrative, depending on what. Label you wanna choose, and the difference is that they look for the root cause so they're going back to the origins of the disease, which only makes perfect sense to you if you're a scientist like it. It would make sense to most people who are scientifically minded and Dr. Block. My impression is, um, when Heather went to Dr. Block in, um, Illinois, that he is one of those functional type doctors. He is an MD so he is certainly a, a full fledged oncologist, but he's also looking into some of the other ways to compliment that with natural and lifestyle approaches. And I'm really hoping myself that he does not get shoved under the bus as we are watching films like apple cider vinegar, uh, because there are very few people like him that bridge that nicely, that really embrace both sides of the continuum. And I think that is where the most hope lies personally. Um, I've talked a little bit about my enthusiasm for exercise oncology. As a nutritionist, I have seen literature. Across the board with nutrition and it is really messy. It's really hard to establish whether or not food can be the reason for certain outcomes, positive outcomes, and lowered risk when it comes to cancer, because food is just really hard to isolate in our, you know, study of our habits. It's, it's not something you can. Crystallized down to one behavior, well, the way that science kind of needs us to do. But exercise and sleep and stress are much easier to get crystallized down to a single behavior or outcome. So I have a lot more confidence as a nutritionist, even as much as I've studied and as much as I do believe in nutrition, I have more confidence in exercise and stress reduction. We, we are so young in the world of science, and that's why it breaks my heart that so much science is being, dismantled right now with our current political situation. But I just wanted to clarify kind of how I separate out these things, and I just wanted to say again, how blown away I am that Heather is out there sharing her story every week, just the salt of the earth, the most down to earth. Human being, not making any wild claims. She's the opposite of these personalities that you see in the Netflix series, apple cider vinegar, where they're just so confident about the reason that they got better, supposedly got better, which neither of them did. Um, whereas Heather has stayed cancer progression free as a stage four patient, which is remarkable. It's not unheard of. There are other women like her who've lived 20 or 30 extra years with stage four cancer without. Any extra meds, even like her not having a whole lot of lifestyle inhibition by the drugs that she takes, but, uh, but that is pretty rare and I just love that she's sharing incrementally how she's doing week by week and staying on with her kind of. Regime of, of strict lifestyle habits with diet and exercise and stress, reduction in sleep, habits to increase the quality of her sleep. So I just love, I love having her in the cancer community at large, not just breast cancer, but the larger cancer community. 'cause I think she gives people hope. And one of the things that Heather and I talked about was the placebo effect, the fact that. Patients do better when they believe they're doing something themselves that makes a positive difference. And I think this is true with any patient taking just about any drug. Um, for anything really, it's, the drug is so much more powerful when we believe that it's making a difference. But it also can be true of our lifestyle choices, our dietary habits, our sleep choices, our stress management. You know, our exercise habits, all of those things, if we believe they're making a big difference, that makes our body all the more powerful, somehow in some magical way that we don't understand and that science can't really capture. But it's called the placebo effect. And Heather was saying that she's a big, a big fan and believer in that in mindset, um, and mindset. Is not just a hocus pocus, you know, belief in something that's false, but it's a belief that the small things that you're doing, even though you can admit that they're small, make a big difference. And so I think this is a great reminder to all of us to choose something, you know, whether it's green tea, like her first oncologist told her to just to go out and start drinking green tea. And then we'll talk about getting rid of this cancer next week. Um, whatever it is, eating more vegetables, eating more fruits, eating more whole foods and less, um, dirty meats and dairy products maybe. I would just encourage you to choose some small thing that you can do that you've decided is warranted. Whether it's something you've read or a doctor's told you, um, do some small thing, not believing that it's gonna cure you or make everything get better, but that it will make a difference. And feeling empowered in that process, I think makes a huge difference for all of us. There is one other movie that just came out on Netflix that I was thinking about talking about 'cause I just saw it today. Um, having just lost my dad, I'm really interested in some of the choices that we make around the time of death. And one of the things I wanna do sometime in the next year is to take a course on end of life doula/end of life planning, because I have friends that have been diagnosed with stage four and I wanna help them--people like Danyel that I would like to help plan the last days and weeks and months of their life. Um, I'm, I feel equipped to do that. And so I'm always interested in movies that talk about death and explore and watch death and few movies do this very well. Like my friend Christine Handy was saying in, in my interview with her, most movies about cancer patients will show them getting sick and then dying immediately, and boom, that's the end of the movie or that's the end of that scene or that person's character role in, in whatever story it is. They don't really address it. They don't. Stretch it out and watch it because it's uncomfortable, it's painful to watch. And this movie that just came out on Netflix called The Room Next Door with Julianne Moore. And Tilda Swinton is a really good example of that. It's not a comfortable movie to watch. It is the least entertaining movie that you've probably ever seen. It's an awkward, drawn out movie with lots of silent parts and hesitations, which as Americans were pretty uncomfortable with, I think. But if you're interested in the subject of death and especially euthanasia, I think that it's a really interesting movie to watch. I didn't love the acting. I'm not a huge fan of Tilda Swinton. I just don't love her acting for some reason. So I don't recommend it as an art piece or something to admire, but just something to. Draw your thoughts out on death and as a cancer patient, I think we can be less afraid of recurrence or stage four diagnoses if we are willing to ask some of the harder questions about what we would do if we were diagnosed and if we were facing death. And I think this movie in particular really addresses it well. I think it gives death less of a sting. It makes it less of a threat or less scary. Of a topic to think about. If we can think about all of the options, all the ways that we can deal with the pain or not deal with the pain. Um, with my dad having passed away just a few days ago, I really faced this myself, um, in terms of just being really insistent that he not be given measures to prolong his life. He was already psychologically suffering from dementia. And it was really important to us as a family not to prolong that suffering. And yet in the moment you always feel a little bit strange telling a doctor that the doctor we were dealing with was really great at supporting us through that decision and not making it awkward, but it's really good to practice. I got to practice with my mom and now I've gotten to practice with my dad, and that makes me more ready to be able to make those kinds of decisions, awkward as they are, socially hard as they are, for myself at some point. If you're interested in those topics, if it's not too scary for you, if you're in a good space, not too stressed out by the political situation right now, then you might check out that movie on Netflix just as an educational opportunity. I just love Julianne Moore. She really takes on roles that explore these bold subjects a lot, so I appreciate her work in that respect. So I will probably be away for a couple of weeks dealing with my family business. And if you'd like to be in touch with me, I am on Substack. That's the best way to hear from me every week. And, my substack is called abreastcancerdiary.substack.com. You can either subscribe through email or if you get the app, you can subscribe on the app and then check it out on the app and not get an email, and I will talk to you soon. Take care friends.
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26 Year Metastatic Thriver, Heather Jose
04/13/2025
26 Year Metastatic Thriver, Heather Jose
My guest Heather has been thriving with metastatic breast cancer for nearly 27 years! How did she do it? She feels that it's a combination of things--not necessarily the trial on stem cell therapy combined with high-dose chemo. She feels that her long-term drug, Faslodex, as well as lifestyle choices around nutrition, exercise and mindset are key in her success. Heather's web site is: https://heatherjose.com/ and her podcast is on YouTube at: https://www.youtube.com/@ImStillHereCancer/videos Kathleen does zoom based peer navigation/mentoring sessions now. Schedule a session here for a sliding scale of $35 to $95 per hour long session: https://kathleenmoss.simplybook.me/ Transcript: Today's podcast guest is Heather Jose. She's from Mount Pleasant, Michigan, and she's an occupational therapist, and the most remarkable thing to know about her is that she's a 26 year post metastatic breast cancer survivor and thriver. And that's a main reason why I have her on the podcast today. I've never met anyone that has lived that long and thrived that long after a metastatic diagnosis. I'm so excited to have you, Heather. H: Thank you. It's great to be here. K: Thanks for coming on. So a huge part of your story is, well, you're, you're a podcaster too, and you tell your story in an informal YouTube and podcast setting. Uh, there in your home with your husband usually, and sometimes your kids are, are joining to tell their part of your story. Um, so people can learn about your entire journey just by looking at back episodes of your podcast. But. I wanna hear what you feel you did differently than maybe some of the people you meet who have had metastatic breast cancer and how your path was maybe a little bit different than the conventional path after being diagnosed. Oh. Start out by telling us if you had an early diagnosis before your metastatic diagnosis. H: No, I was diagnosed de novo, so stage four from the start. Um. I think, and I, looking back, I was 26 when it happened, and I think some of what worked for me was being a little bit naive about a lot of things, right? I look at, my daughter is now 27 and doing great at life, but you know, there's a lot that you learn over the course of time, right? So I think it helped me to be able to just kind of go into this going, well, okay, how do I, how do I stay here? How do I figure this out without knowing, I don't know, even the gravity of all of it. K: Sure. Absolutely. And did you, how many months or years did you stay with just conventional treatment before branching out into integrative treatment? H: Well, the, my first doctor told me to get my affairs in order, I stayed with him for about 20 minutes and we were done forever. The, the next oncologist that I talked to was the next day. She told me even on that phone call, "drink some green tea, eat some fruits and vegetables and we'll start killing cancer on Monday." And it was so empowering, like, SO empowering. Here's a oncologist from the University of Michigan who you know, is renowned in her field and, and, she's telling me like, go get some green tea and it was the best thing ever for me. And that of course kind of was like, okay, what can I do? so right from there we started to do some research. And when I say we, I should say my mom, because I knew early on that I could not handle all the information coming in. I knew that it, I just needed to kind of protect my mind and kinda keep myself in a bubble. So she started doing, some exploration of, you know, what else is available that could help kind of bring pieces, of knowledge to the table. Because even at that time, and I, I know nutrition's tricky anyway, and I know you've talked about some of this, right? But you'll, somebody will tell you "a calorie is a calorie" and somebody else will say, "no, you have to do this." And we wanted somebody who was like, no, what we would like you to do is this, and the reason why is because the research has shown the way to go. So we actually found, um, an integrative oncologist early on. I, I was seeing him, I was diagnosed in December and I went to see him in February. K: And this is Dr. Block. H: This is Dr. Keith Block. So, yeah, and he's, um, he's in Skokie, Illinois now. He was in Evanston at the time, but they're just neighboring towns. And, um, it was so, it felt so good to me to be there, to have them kind of say, yeah, we'll, we'll help you kind of put together a plan, but also the reason why we're doing this is we're gonna look at these labs, or we know what this study says. All of that kind of information was great. I felt like I could just, you know, really rely on them. K: So when you went to see Dr. Block, did you leave the green tea oncologist behind or did you continue to work with her? H: No. She's still my oncologist. I mean, and, and I went to Dr. Block saying, Hey, I've got this great oncologist and what do you think of this plan? And he said, I think that's a great plan. And here's what, you know, we can add to it. So it was kind of nice to have kind of a second opinion all the way through, um, the first, the early years, and then also have this nutritionist and, and different people on board. K: Okay, so Dr. Block worked in collaboration with your oncologist. Would you say that? H: I would say Dr. Block, um, helped me put together the other pieces of the puzzle that I was really interested in, in terms of nutrition, supplements, he was talking about visualization, encouraging exercise, which my regular oncologist was also doing. It felt really good to have this kind of, not that they were talking a whole lot, but to have both of these people that I really trusted telling me, yeah. "Do these things." K: And they actually agreed about what these "these things" were? Wow. That's great. H: Yeah. My oncologist has always been, um, I think ahead of her time you know, in terms of recognizing what our bodies can do with proper nutrition, exercise, all of those kind of things. K: Okay. I was gonna ask you if you ever went back to her now, you know, 20 some years later and said, why the heck did you tell me to go and eat green tea? But it sounds like she has continued to be consistent in her endorsement of things like green tea and fruits and vegetables. H: Absolutely, it's been a while, but we ran a 10 K together once. She's very supportive of being active and healthy and she will always. Um, check in on all of those kind of things. What am I doing to work out? How am I eating all of that? K: Okay. Now the $10 million question, do you feel like your lifestyle choices in terms of working out and eating right, have made, and does your intuition tell you that those things have made a difference in your longevity? H: I think absolutely. I think part of it is that you're trying to build what. least at the beginning, I was trying to build the healthiest body possible so the treatments could be as effective as possible, I wanted to kind of eliminate any of the extra work that my body was maybe having to do, you know, and, and give it really great fuel. That was my whole, know, process in that was how can I make my body as efficient and effective as possible? K: Okay, so you're saying you wanted your body to be in good shape so that the treatments could be effective, so you weren't replacing the treatments with lifestyle. I think that's a really important distinction. H: God, no. Absolutely not. Not at all. And there's this other big piece, which is mindset. So for me, I was kind of like, I need to believe in everything that I'm doing, and being able to believe in these things then helps me kind of put together this whole picture. The medicine's working and it's doing its job, and I am doing my job by, you know, keeping myself as healthy as I can be. I mean, it's, it's a whole picture. K: Yeah, so Dr. Block is a, a medical doctor and he's an integrative. He has an integrative center, I think. So let me just clear clarify for the listeners who don't understand the difference between integrative and alternative, I. Because there's this really crazy amazing, um, series on Netflix right now that just came out called Apple Cider Vinegar. That is, I think, not defining these things very well. And it really strikes terror into some patients when they don't have definitions. So alternative therapy, uh, natural therapies can be offered instead of conventional medical treatment. And that's, that's what we call alternative, but integrative means it's a natural approach or a lifestyle approach that works hand in hand with conventional medical therapies, and that's what, obviously that's what you've chosen and what Dr. Block has chosen. He's not saying "you don't need chemo radiation, you don't need those oncology drugs or the hormone, suppressors." He's saying, do all of that and let's do what we can to get your body into the best shape it's ever been in so that your body is resilient. Against the negative effects of those treatment, but also receptive to the positive effects of those treatments. Okay. H: Perfectly said. K: Okay, cool. 'cause I want Dr. Block to not fall into that camp that is being, you know, criminalized--rightfully so. I think! ...by, by this, this new wave of, of truth telling in cancer where, you know, the, the Hirsch therapies in the movie, apple cider vinegar down in Mexico is, is really the Gersen plan or the Gersen therapy. And that really is an alternative. They use enemas and juicing instead of chemo and radiation Typically, I don't know what they're doing now, but typically, um, that's what they've been seen to do. And a lot of other podcasts that I've listened to that are based on health and nutrition and lifestyle will actually give. Those therapies, some airtime and some credence, and that can be really confusing for patients. So I just want patients to know that. I would not be inviting a guest on my podcast that would endorse that kind of, um, miracle Cure kind of thinking. And, and Heather is the crystallized, you know, perfect guest to endorse the. What we call integrative, which most cancer centers across the country right now are embracing integrative therapies. Things like, you know, those complimentary therapies like acupuncture and massage and nutrition and activity, physical activity. So cool that you can tell that story well and tell such a successful story. Um, while, while telling that, but tell us about what kind of traditional or conventional treatments you did take part in. I know you did a clinical trial, uh, maybe you could tell us a little bit about that? H: Yeah, so again, I was diagnosed in 1998, so this is, and things have changed a lot during that time and I think it's important to state that because sometimes people come to me and they want, they latch onto one part of my treatment. Treatment as if it was the thing that was everything for me. And I don't really, I don't believe that that's the case, but I started with four rounds of chemotherapy. Um, I. had a five cm tumor. Um, by the end of that treatment, my tumor was undetectable, but we still had a lot of things going on. And the next thing was that I, um, I did a double stem cell transplant. So a double stem cell transplant was a clinical trial. this is something that people will sometimes say, how do I get that? How do I get that? my answer to that is that what was. Proven through the research is that there are better ways to address cancer than a stem cell transplant. Like this is high dose chemotherapy, that not everybody comes through . They take you down to kind of zero, and then hope that your trans, your stem cells will regenerate and give you back what you need. Um. It's just, it, it was found that it wasn't the most effective way to go. And right on the heels of all that was targeted therapy and all of these things, these drugs that are so much more effective and also, uh, less dangerous in terms of side effects. So. Um, after the stem cell, I did a double mastectomy, and after the double mastectomy I did radiation, which was kind of my, my year of treatment. And then from there, went on to start, drugs, like I started on tamoxifen, and it was also on a bone strengthener because of the bone mets. K: Sure. Now, just to clarify your clinical trial, it sounds to me like from what you're saying you were given stem cell therapy in cooperation with high dose chemotherapy and in the thought that the stem cell therapy would help your body to be more, um, your body would recover better from the trauma of high dose chemotherapy. H: They use them because. In traditional chemotherapy, they're, you know, they're constantly monitoring, you know, what those, those levels are. And with, without, um, the stem cell, they, the thought was they could bring all of the levels down even farther and maybe kill more or any lurking cancer cells K: And they did that through a more intensive chemo regimen or through some other, okay, gotcha. Okay. So you endured more chemotherapy than the average patient did at that time, and probably today as well. And the way that you recovered from that was the stem cell treatment. Gotcha. Okay. H: I mean, the stem cells are necessary for you to be able to then come back to life. Yeah. K: I think most people listening to your podcast and to your story will then say, gimme some stem cell treatment please. So how do you respond to that? H: I just, I enduring, it was really hard. I mean, I never, I, the closest I came to death was during that time. Also the cancer was undetectable before we started it. Right. And I've been stable on a medicine that is easy for me to endure since 2004 Is it that the one piece? I just don't believe that you know. K: Okay. What's the one medicine you've been on all this time? H: Faslodex, which is also called fulvestrant. Yep. K: Tell us about that one and, and how you feel while you're on it. H: Yeah, so I started on that in 2004. We kind of did Tamoxifen for a couple years, had a slight, you know, change in the bones. I've never had anything, big happen. But, , so Tamoxifen went to Arimidex for a couple of years, and then same type of situation. My doctor said, Hey, there's this new drug, it's called, you know Faslodex, I'd like to try it. And I was like, okay, it's. Um, at the time it was one injection, um, and just into your hips, and I tolerated it super well. Um. Because I started it so early, later, once it went through all of the testing became a, a double dose of that. And I've been on it so long, we're now back to a single dose. Kind of like, what, you know, we've talked about, because I've been stable for 21 years now, or 22 years now. It's been, it is the question of, you know, what. What do we, how do we continue this journey? the medicine necessary? Um, you know, what does that look like? So, um, the, the problem with the faslodex for me, after so many years of injections is, uh, some scar tissue in my hip or my lower back area, to be able to do one injection versus two just really helps me from a comfort level, um, you know, endure that. And I felt very comfortable with that because I was on one dose a long time ago. K: And what other side effects have there been any other immediate side effects? H: I am not a big side effect person. I'll be honest, I don't really, I even from the very start of things, I've always kind of said, "if there's side effects you need to, like, please tell my husband or my mom or something so I can kind of like bounce things off of them if I'm feeling something." But I know how my brain works and I don't wanna manifest things you know, I don't need to. K: Oh, okay. So you're saying you never looked into the side effects and therefore you never experienced them. Is that what you're saying? H: That's why I'm saying is, I mean I learn about side effects sometimes because they happen, talk about from a bone standpoint, the Biphosphonate I was on, there's also things that, like with a Faslodex, it's super easy for me to tolerate. I'm sure there are some side effects that. People talk about, but for me it's in and out. I actually got my treatment today. Um, there's no, just, easy and I appreciate that, K: Yeah. Yeah, it's a very different drug. So did you get onto Faslodex because of a clinical trial initially? H: It wasn't actually a clinical trial, but it, it just come out like, so they were still working on dosing at that. So, yeah. K: So it sounds like you, you're giving it five stars in terms of the treatment. H: I mean, anybody who can walk in and out of a cancer center you know, maximum 10 minutes, that's, I think that's five stars, so, I mean, you know, maybe I turn on my heated seats on the way home. Like, okay, that's, that's good. Drink some extra water. I mean, okay. K: Brilliant. No, I love it. So why did you stop taking Tamoxifen? H: Uh, because there was a little bit of a change, so we just moved from like a, a change in the bone--a little bit of progression. has always been like, we're moving to the next thing, K: Oh, you mean there was a cancer progression in your bones? Is that what you're saying? Okay. So it wasn't responding to Tamoxifen. Okay. H: Yeah. I mean, we can talk about all that too, because over the years I've now learned to do, to do bone biopsies. And I've had two bone biopsies that have come back clear. So it's hard with bone changes to definitely say this is, um, you know, the cancer. Right. So especially when it's in little things. Again, I'm not an expert on reading scans by any means... K: Yeah. No, that's good. I think that just an overview is good. I, I don't wanna get into too much medical stuff 'cause we're, I'm not a medical person, so I can't defend and define those things. Um, but I do wanna ask you about the double mastectomy because most, almost all patients who are diagnosed de novo, like were, do not get a double mastectomy, even if they want one. So what happened in your case that made that different? H: Well, that is, I would consider that a new way of thinking. So that was not the protocol in the late nineties. That has changed since then. And I, I think there's a lot of, um, I understand why women sometimes are scared because they don't have a double mastectomy, but I also feel like being able to keep your breast is really, um, invasive a great thing. K: Yeah, so you, it sounds like maybe miss your breasts and, and feel a little bit of regret about that. H: Yeah. I mean, I can't, I can't regret something that I didn't have the opportunity to make a decision on. Right. But I didn't realize the impact it would have on me, the loss of my breast in terms of, I. image, uh, sexual pleasure. All of these things were, there's a big piece of me that is missing. of course my first priority is to be here. But I think by just, you know, have, when we have these, double mastectomies and you know, do reconstruction, it's not like they're the same. They're different. K: Do you wanna talk a little bit more about that? How is, how is it different? I know you went a few years without breasts, so you were flat for three years. H: Yeah, and I'll talk about that too, like, so when we did my double mastectomy at the time. I was offered reconstruction and my whole thing was like, no, uh, I know it's, I mean, I thought, at least at that time, I was like, this is a procedure that can be quite painful. There's a lot of pieces to it. And so my only thing, I just wanted to be healthy as soon as possible. And I was like, I don't mind being flat. That's, that was fine with me, and honestly. was fine with it. One of the reasons that I chose to have, uh, reconstruction was because. It can, and it can be very painful to have just kind of your sternum exposed. I had young children at the time and like that head coming back into a couple times, sent me skyrocketing. And so I was like, I am willing to look into this. And I was also a couple of years out and feeling really good. I felt feeling strong enough to be able to take it on....
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Giving Back Through Breast Cancer Advocacy
04/06/2025
Giving Back Through Breast Cancer Advocacy
Today's episode is part two of my advocacy series. I hope it's helpful, but if volunteerism and advocacy isn't your thing, I'll have more stories from guests coming up in the next two weeks! Subscribe on: - - Join my Newsletter Mailing List: Links: NBCC: LBCA: Tigerlily Foundation (WOC, young ambassadors locally): Inflammatory Breast Cancer Network: Project Life MBC (metastatic): Project Life MBC/LGBTQ: MBC Alliance (metastatic): Triple Negative Foundation: Stand Tall AFC: Not Putting on a Shirt: Make Cancer Less Shitty: Young Survival Coalition (science and legislation): The Breasties: For the Breast of Us (women of color, national): Cancer Culture (for metastatic patients, event driven, in Virginia): Today, it's just me again, and I'm going to be talking about advocacy again, this is part two of my two part series on advocacy for breast cancer patients or former patients who are thrivers and survivors. And my first, if you heard. Didn't hear my first edition, uh, to this series. It was about the less intense ways to become an advocate. The ways to just dip your feet in the water and try it out. Uh, less commitment, less intensity, less time involvement, less, less longevity to the commitment that was last week. Now, this week I'm gonna be talking about the kinds of ways to become an advocate that are longer term, more time intensive, not necessarily, you know. Something you couldn't do in your evenings and weekends if you're still working full-time, but, uh, a little bit more hardcore advocacy. And like I said last week, it's mainly in the niche areas, in the edges or the margins of breast cancer that you find opportunities to become an advocate, but not always. So I'm gonna start out by talking about the more mainstream organizations that support breast cancer advocates, the ones that aren't fitting into any of those niche, margin. Topics or populations. So, as you may have guessed, Komen and the American Cancer Society are two of the most visible organizations that work with breast cancer survivors. Long term, they have mixed reviews. They're, you either love them or you hate 'em. People who are critical of them are critical because a lot of the dollars they raise go back towards the bureaucracy of running their very, very large infrastructure organizations. So it's a little bit of criticism there. They're doing the best they can, making improvements, aware that they're being criticized. Komen will tend to want to partner with people around just fundraising and awareness raising and visibility for their campaigns. They have a couple of different campaigns nationwide. The main one is More than Pink and that's just their walks in different towns and cities, you can show up there, bring a team and , get your team to raise money for them, raise visibility for them, and they will be very happy. The other thing that Komen does is they train science advocates and their program is called Advocates in Science. AIS and once you sign up for that, you'll wanna look in your email inbox to make sure and catch all the a IS emails. I am an advocate in science with Komen, and sometimes I don't know the name of the person that's emailing me from them, but usually they'll put the, the, um, letters A IS in the email. So it's a very hands off. Uh, advocacy training, it's all online. It's very impersonal. You don't actually get to know any one person in particular. And that, for me, was hard. I like to do a little bit more personal work and be mentored and, I don't know, see people in person when possible. So, AIS is a really good program that I recommend for those of you who are maybe introverts who don't wanna travel across the country. To go to an in-person advocacy training. And again, that is science advocacy. That is a very particular brand of advocacy. We have mainly two brands of advocacy, um, education and science, and then there's fundraising for those that wanna just do fundraising. So to, oh, and then there's actually, there's four that I'm gonna talk about today. So education, that's peer-to-peer. Uh, sometimes you can educate your clinician. Usually you're not trying to do that. And uh, science is usually with regard to educating yourself in terms of research so that you can go and be, an advocate in the research community. And then fundraising obviously is really easy. You just go out and raise funds for whatever organization you support. But then there's also, uh. Legislative advocacy or lobbying. And that's another type of advocacy that you can do for certain types of nonprofit organizations that are not 501c3's. So I'll talk a little bit about that. But most of what I'm gonna talk about today is about education and science. Um, so. Some of my favorite organizations, oh, and I was gonna say that, um, American Cancer Society, they're the other kind of mainstream, huge monstrous organization that supports breast cancer patients in the world. And they do that by kind of gathering the science and, uh, reporting out on all the numbers. And, every year there's, you know, different statistics that come out from them. They also do a lot of funding for research as Komen does, and they really like to. Team up with folks in the breast cancer community more personally , choosing one or two representatives, or ambassadors from the breast cancer community locally during the time that they're putting on a walk in the local community. So they will ask you to raise a certain amount of money as their ambassador, but also they will ask you to go out and publicly speak, maybe get on the news for them so it's a little bit more of a partnership and you'll be mentored a little bit more personally. But it's not educational in nature. It is very much fundraising awareness, raising media, raising for them and for their cause, not necessarily for you or for your cause. So beyond those two gigantic, kind of global organizations, we've got all of the marginal ones. And so I'm gonna list off a bunch of those and, I don't know a whole lot about all of these, but I know quite a bit about most of them. So I'll start out with some of the ones that I've been involved with that I can tell you personally about. My favorite one is called the National Breast Cancer Coalition. , they are my favorite because they have invested the most in me, and they are a little bit more of an edgy research organization. So unlike Komen and maybe American Cancer Society, they're doing funding of kind of novel ideas in the breast cancer space. Uh, they're not investing as much in the kinds of studies, uh, and trials that we've been doing for decades and decades. So they have a little bit different edge on, their standards for choosing the research that they will endorse. And they lobby for lots and lots of funding, mostly from government sources every year. And then they also do. Uh, more legislative lo lobbying so that's what they do as an organization, but then. The way that I interacted with them is they trained me to be an advocate in science. So just like Komen has their advocates in science, NBCC has their advocates in science, and you can be both at the same time. If you're really obsessed with science and the science of breast cancer, then I highly recommend being both. So NBCC though, they train. They're advocates in person in San Diego every year. It's a highly competitive program. Not everybody gets in. You have to kind of prove that you're serious about advocacy before you apply, and one of the ways that you prove that you're serious about advocacy is by showing up to their leadership summit, which happens every May in Washington DC. So they're kind of like a bi-coastal organization. They have their big event every year in Washington dc Everyone's invited to that every year consecutively. You can come. Over and over and over. And then they have their week long training in San Diego every year, but that's only a one time thing. And there are follow up trainings, but most of those are online. And then they do have their legislative advocates that they train separately. And that's pretty much online. It's, it's more of a, a zoom based training. But I, I really got a lot out of their project lead, which is their advocacy in science or advocate in science training in San Diego. And I did it backwards 'cause I came to them straight after Covid. I got into the project lead the week long. Educational training in the science of breast cancer before I went to the summit. I'm going to the summit next month for the first time, but I haven't been to the summit before. Most, most often you'll find that you are accepted into Project Lead after you've been to the summit and Project Lead. What it is is very intense day long trainings. By the scientific community. They bring in all the best scientists in breast cancer from all over the world, and you learn from them directly on all of the different. Parts of the science of breast cancer. So you learn about immunology, you learn about breast cancer research, how to look and pick apart, uh, a research, a trial, so that you know whether it's reliable. Uh, you learn about the different ways that media can spin that research to make it look more significant than it really is, and some of the more kind of controversial issues in the breast cancer research world, you kind of look into those too. So I highly recommend that if you're a serious. Someone who's serious about advocacy and you really wanna go the long haul and use your knowledge in, in breast cancer science long term, it is a big investment that they make. It is an expensive training and there are scholarships for it. Um, usually they'll just pay for part of it. Uh, but if you have a sponsoring organization like I did, then your sponsoring organization can also provide you with a scholarship in many cases. So that organization that sent me to the NBCC's project Lead is the Lobular Breast Cancer Alliance, and I am now an advocate for them. I am one of their official advocates. After going through NBCC's program, I. I, I started to work right away, uh, leading one of, or coordinating one of their programs, a local advocacy teams program. So the LBCA supports me in a lot of ways, but I also support them because I, I do a lot of volunteer work for them and kind of mentoring other. Newer advocates in an in-person local advocacy team setting. So you can join the Lobular Breast Cancer Alliance if you've had lobular breast cancer, or even if you haven't, if you're a caregiver or someone that cares a lot about lobular, usually it's the patients that come to us. And there's lots of ways to get involved as an advocate. With the Lobular Breast Cancer Alliance, it's one of the most open organizations, lots of ins, lots of opportunities, and those opportunities are made very clear on the website. There are committees that you can join. You can do more nationally based advocacy and education. You can do research advocacy, you can sign up to be a research advocate in lobular trials, and then the Lobular Breast Cancer Alliance will have your name on a list. When a scientist comes to them to say, Hey, I need a patient's perspective, then the Lobular Breast Cancer Alliance would call you and say, Hey, this lab needs a patient's perspective. Usually that lab's not gonna be in your backyard, but it might be probably not. Uh, and then you can sign up to be on the team of people that review that trial in an ongoing way from the beginning to the end. And that's what we call advocates in science or advocates in research. Or you can just do your own local advocacy in your own community to raise awareness for lobular breast cancer like I do and like I help other people do. And that means not just showing up to walks, which would be great, but also showing up. Uh, on October 15th, which is the global Lobular Breast Cancer Awareness Day, uh, it could mean that you're bringing flyers and literature to your local clinics and libraries of clinics or hospitals, or to your clinicians. It could mean all kinds of things. You could do fundraising for the LBCA. Doing all kinds of advocacy and they give you a whole big, long list of ways that you can do that. You can do interviews for national media or local media. You can set up a table at a health fair. Just all kinds of ways to do advocacy with that organization. They're an excellent organization that supports their advocates very well. The next place on my list is around metastatic breast cancer, which in my experience and opinion, needs a lot of support and awareness raising. And the one of the organizations that has maybe a little bit less receptivity or paths of, , being able to join them is the MBCA, so not the LBCA, but the MBCA, which is Metastatic Breast Cancer Alliance, and they're at MBCalliance.org and you can join them if you're an organization like the LBCA is a member. That's a group member or you can join them if you're a patient who has been metastatic. I tried to join them as an individual member. Since my mom was metastatic as an advocate for metastatic breast cancer and I was not accepted. So I think probably if you're not a metastatic patient, you may not be accepted as an individual member, but if you are accepted as an individual member, they're very supportive. They have regular meetings. They will give you support in terms of like scholarships to training events of your own choosing. And it's a very, um. A great, a great network of resources. So they're gonna provide educational resources and travel grants to get to different conferences to learn about metastatic breast cancer. Another organization that I work with closely is Stand Tall, AFC. I've mentioned them a number of times in the podcast and so I won't say a whole lot about them, but they are about the type of closure that you get after a mastectomy and at stand tall we are really just focused on. Breast cancer walks, it's a very narrow path of advocacy. You can only be an advocate at stand tall if you are going to the breast cancer walks in your community and either leading a team of volunteer, flatties that can, are willing to be seen as flatties. So whether they're wearing a shirt that says flat, or whether they're taking their shirt off to be seen, um, it's just about visibility, support, and solidarity. And then if you've done that kind of leadership, if you led a team in the past, you can move up to the next. Responsibility level and do a table. And so I kind of mentor people around tabling and tabling at walks is very different than leading a team at walks. It is much more conversational, much more educational. There are, you know, brochures and literature and, and things you can hand out and use as kind of prompts when you're just getting rolling. So it shouldn't be something you're too intimidated to do, but it is very much of an educational role. And so Stand Tall AFC has that place in the breast cancer world of just showing up to breast cancer walks and breast cancer events and either showing visibility or educating folks that walk up to your table. Another flat. Oriented organization that's a little different is Stand Tall's umbrella organization, which is a, a nonprofit called not putting on a shirt.org. And um, they are doing a kind of a legislative project where they're seeking to amend the wording to the W-H-C-R-A act. Um, it's the Women's Health and Cancer Rights Act, and they are seeking to just. Put a couple of words in that would make it a little bit more likely that flat closure would be funded by insurance in all cases across the board. Just the way that implants are funded by insurance in all cases, which is what the W-H-C-R-A was created to ensure. So that's a very niche little path of advocacy. But I will put that link down below so that if you're passionate about the W-H-C-R-A and adding those two words, um, so it's not just paying for, reconstruction, but reconstruction or chest wall reconstruction. The chest wall is the two words that we're seeking to add. So that's a very, very, very niche, um, area of advocacy, but very legitimate for many of us, including myself. And so I'll put the link down below to let you look into that if you're interested. Uh, the Triple Negative Breast Cancer Foundation, this is one I don't know as much about. Um, this is one that is, I think they're the main contact for triple negative advocacy in the world. And the main thing they do is. They allow you to help them fundraise. So it is pretty simple. There's not a lot of paths into the actual work that they're doing. As far as I can tell. It's mostly about fundraising or you can receive support from them in terms of getting into a support group or something like that too. And then, um, some of the organizations that are oriented around women of color and their needs are Tigerlily at tigerlillyfoundation.org. They are mostly concerned about equity and um, they have a really beautiful program that they allow everyone, I think everyone can apply to be, to be an advocate for them. So they have their own advocacy program, it's called Angels, and I think it's mostly geared toward younger women who are breast cancer survivors. And it's mostly geared toward. Advocates pushing for equity in healthcare setting for people of color, women of color. So if you become an advocate for them, you're mostly gonna be advocating for women of color, even if you aren't a woman of color. Um, but most of their advocates are women of color, but they're very, very inclusive. I felt very much embraced by them when I met them at the San Antonio, breast Cancer Symposium. They were not. Only interested in partnering with women of color. I've, I'm very much not in that population, so I've, I'm just, you know, Northern European in my ancestry, so. But they were very interested in allowing me to fill out the Angel application to become an angel advocate. So I love that and I love them. And the other one that I've interacted with a little bit in those same spaces at Project Lead and the San Antonio Symposium is "For the Breast of Us", and their website is breast of us.com. And. They are a little bit less, I think they have a very small staff. I can't tell that whether they're interacting with folks very much on the advocacy. In terms of like mentoring or supporting advocates in, in their space, but they are very much educating and giving lots of resources. So if you're wanting to be kind of a solo advocate and receive from them the resources that they have to give around advocating for women of color and breast cancer, I think they're amazing. They're really good at kind of redefining things in their own terms, so they don't say allies. Uh, they say accomplices and they have a little training for accomplices. Again, for people who aren't women of color who want to be allies, what we call allies in this space, um, they call them accomplices, so more like partners than just allies. And so their website is extensive. It's really, um, it's really full of resources, but you can't. I don't think they even have a newsletter. They don't have a lot of interaction, I guess is what I'm saying. They're supportive of advocacy, but they're not training or supporting advocates or communicating every, every month with advocates the way that the LBCA does, for example. Um, but they do have a great podcast and I think that if you got involved in reading their blog or listening to their podcast, you'd probably find some ways in. To connect with them because I know they do send advocates to Project Lead, so they must have some ambassadors in some respect. Um, so yeah, I encourage you to learn more about them. Uh, let's see. Young Survival Coalition, so their young survival.org is the website. They have mostly science and legislative advocacy programs, and they have in-person events. Their in-person events...
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The ABC's of Breast Cancer Advocacy
03/31/2025
The ABC's of Breast Cancer Advocacy
Today I'm just talking from my own experience about some of the simpler ways to "stay in" the breast cancer community as an active advocate. Here are some of the organizations that came up: After Breast Cancer Diagnosis gives and trains mentors here: Stand Tall AFC is the flat visibility organization that I work for: Lobular Breast Cancer Alliance welcomes advocates of all types: Wildfire Magazine is here: AskEllyn's blog is here: Blessing Box, out of Texas, is here: Knitted Knockers is here: Transcript: Today I want to talk about advocacy, and I realize that I have so much to say on this subject that I think I'm gonna do two episodes on it. So, this will be the first of two in a two-part series, and I think this is a really important topic. I kind of wish that I had addressed it earlier. I've had a lot of folks asking me about advocacy lately, and it's a tricky topic because you don't really approach it in the same way in other parts of life. Um, we don't see a lot of people, uh, for example, you know, when you get diabetes, you don't hear about diabetic advocates, but you do in the breast cancer community a lot. And I think it's because it's a women's health issue. And women's health issues, usually they involve some amount of maybe injustice or a lack of power, or a lack of notoriety, traditionally. I think that that is not true at this point about breast cancer, but for whatever reason, the breast cancer community has really pushed itself into the public eye in so many different ways. And so now being an advocate in this space is very normative. And yet most people don't know as they enter the breast cancer community as a new patient, what it really means to be an advocate. And if they have permission to be an advocate. So advocacy is actually one of the main reasons that I started this podcast. I wanted to tell the stories of all of the amazing advocates that I've met in the world, and I meet more and more every year, and I never seem to run out of interesting advocacy stories, and yet I've never really qualified that... I've never said, well, this is today's advocate is as I'm interviewing people. So I've done a poor job of defining what an advocate is and. That's mostly because it's pretty hard to define. It is so broad reaching and multifaceted, and it can be very simple or it can be very complex. And so today I wanna talk about the ways to do advocacy that are simple. And next week I'm gonna talk about the ways to do advocacy that are a little bit more complex and involve a little more education and oversight. Uh, maybe some mentoring, maybe some coaching from others along the way. So first I wanna define my. Kind of idea of what it means to be an advocate in this context. Unfortunately, the word advocate stems from a Latin word, which means lawyer. And so a lot of people when they hear this word advocate, they think about legal spaces. And I, most of all, because I actually had one of my, uh, most recent jobs actually was working for, uh, the foster care community. . There's an organization that's a national organization called CASA, which is court appointed special advocates, is what CASA stands for. And CASAs are volunteers that go into the court system and advocate for foster kids in a way that their attorneys can't. And I won't go into that because it's a totally different subject, but like most people, I have the same association of the legal system when I hear the word advocate, but in our culture and in our language, advocate means something different. It means supporter of a cause or public support of a cause or a group. And that's what we mean when we stand in the breast cancer community and use the word advocate or the word advocacy. We just mean support and raising your voice in some way. Or doing an action in some way that supports this cause or this group, or in most cases, a subgroup of this larger group of breast cancer patients and breast cancer science and all the different ways that we need to be active in breast cancer. And so the simple ways that you can do that, uh, and still call yourself an advocate legitimately, are to raise visibility and support in any of the niches that are involved in breast cancer culture. So first off, visibility. What does that look like? Well, it means raising awareness and showing up in groups where there's under, or misrepresentation of a minority group. So in breast cancer, there are many minority groups. There are the typical minority groups which have to do with race and gender, and then we have other minorities that have to deal with subgroups of diagnoses and, um, subgroups of, of breast cancer itself. So we have the triple negative subgroup that represents about 15% of the total population of those diagnosed with breast cancer and the lobular breast cancer subgroup, which also represents about 15%. And then there's inflammatory breast cancer, which has a smaller percentage. And then there's other kinds of even more rare, uh, diagnoses like LCIS, for example, which is pretty rare, um, as opposed to DCIS, which is the more common type of precancer. And then there's the markers, which triple negative does refer to, but there are people that are triple positive and that's a pretty rare category of markers and diagnoses. So, I don't think that there's any triple positive advocacy groups out there in the world. But there are triple negative advocacy groups and um, and then the category of metastatic stage four cancer is another major subgroup in breast cancer culture and breast cancer community that is highly under and misrepresented, um, in terms of the number of dollars that go toward the research to pro provide a cure. Traditionally, although there is more and more research now. Oh, and I didn't mention, there's also the subgroup of the type of closure you get after mastectomy. So that's another area where I am highly involved in raising awareness and visibility is for flat closure as opposed to the main. Kind of closure that gets a lot of support and accolades right now, which is implants, um, as a, a way of walking away from mastectomy. And then deep flap is the other way that is a little bit more commonly endorsed by the medical community, but flat closure is a lot less endorsed in this day and age. So raising visibility, what does that look like? Well, it can look all kinds of different ways. It really basically means just not staying hidden in your identification with a particular minority group or a niche of the breast cancer community. So being active on your own social media platform is actually an active advocacy. So even if you never leave your house or talk to another person in real life about the kinds of things you're dealing with. In your subgroup of the breast cancer community, if you feel like you're underrepresented and that that topic or that diagnosis or that subgroup is not getting as much visibility as it should, you have the option to go online and make a statement to your community or the wider community at large about how much you care about that. And that is raising visibility. And in my book, that is advocacy big time. And I think that's the way that most of us start as an advocate is just going onto Facebook or Instagram or various other social media platforms and telling our stories and telling why this part of my story is really important to me and why the fact that other people aren't seeming to value that part of my story or that part of my breast cancer experience. Uh, is is even more important to me to bring it into the light when it seems to be being shoved into the darkness or into the corners. And so we have an amazing tool at our disposal right now to raise awareness and raise visibility for all of these things. And we can do it in isolation as a single agent, or we can do it in community and in groups and non-profit and other charitable organizations. So when you want to attend a larger group gathering that is for advocates in particular, you do have to many times have a sponsoring group or agency or nonprofit that you're identified with as an advocate and that. I will leave for next week's exploration of advocacy because that's a little bit more, um, of a complex relationship with advocacy than what I was gonna discuss today. But in terms of visibility and support, um, I just wanted to say that you are counted among us as an official advocate, even if you aren't associated with a nonprofit, a government agency, or some other charitable organization, even though you might not get into NBCC's project LEAD, for example, without an organization sponsoring you or, um, you may not get to be a part of something, uh, that would call you an advocate and bring you up to the stage as an advocate, quite as readily. If you're not associated with a larger organization or community, you still are an advocate. I just wanna clarify that, uh, because the advocates that I have coached and led, for the Lobular Breast Cancer Alliance sometimes get a little confused about that. And if they're confused, I'm sure that the general population of. Breast cancer survivors is also somewhat confused about that as well. So the second area of lighter weight advocacy and the ways that we tend to start out as advocates in the world would be, uh, as a "support agent", an agent of support. So there's visibility and then there's support. And there's also probably a hundred ways that you can show support or provide support, either in person or um, through the mail or online. Lots of different ways. So I'm just gonna list out some of the ways that other people have supported me. I had my local breast cancer support group that was here in my rural area in Oregon that was ready to catch me first off. That was the first place that I went for support personally and where I gave support personally by showing up to an in real life, in person coffee shop meetup, and talking to other brand new survivors and patients in treatment. And then the next place that I went after that was to a mentoring organization to receive a mentor. I went to the organization called After Breast Cancer Diagnosis, ABCD, and um, all of these organizations that I'm mentioning in today's episode. I will definitely list in the show notes with links. Um, and ABCD provided me with a mentor and my mentor, Lori, uh, was also a member of the LBCA, and she's actually the executive director of the LBCA. So that was the third organization that I received support when I started volunteering for them. Another place that I went for support, um, very early on was, uh, for physical needs. So I went and asked for a mastectomy pillow from one of the many organizations and individuals across the US that provide mastectomy pillows as a service to other patients through the mail. And the one that I received my. My mastectomy pillow from was called a blessing box, and, uh, I'll leave the, the link to that below. But I've since found out about other places all across the US that provide these kinds of supports. Uh, not only did I get a mastectomy pillow out of it, but I got a little mini seatbelt pillow, which was also very handy, and a bunch of other little goodies that they sent as just kind of a, a gift in the mail. Uh, a lot of women that I know need prosthetics and they don't have their prosthetics provided by their insurance, and so a lot of women that I know go to an organization called Knitted Knockers to get their first prosthetics, which are knitted as the name implies. Um, they're knitted prosthetics, and they have, they're stuffed with a fiber fill. So just a really lightweight. Polyester filling that makes a very lightweight breast form that's pretty gentle right after mastectomy. So those are ways of providing advocacy too. And those are ways that a person can sit in their home and not interface with people if they're shy or if they're introverts. They can do that kind of very physical service to others, um, through the mail. And there you probably, if you wanna do that kind of work, you probably would be best off with joining with all the others that are currently doing that work, um, and maybe being a regional representative of that work for them so that your package that goes through the mail and gets to people maybe goes a little bit quicker, uh, because they live in your general area. So I would say it's probably wise to not reinvent the wheel and do all of that kind of marketing work that gets the word out to patients, because they're gonna be going to places that they already know and that their support groups already know exist. So no need to develop your own kind of brand new program that does its own marketing, uh, unless you have a, a really strong connection to your local support groups and local breast. Cancer recovery, uh, organizations in which you could provide it to them directly and they could provide it to the people who come through their doors. So there's all kinds of ways. Um, you know, my mentor lives on the other side of the US from me, and I receive support from her, , all, all those miles away. And I've, I met her in person when I finally showed up to a breast cancer conference, a science-based breast cancer conference for the first time that she's involved with. Even mentoring can be very much online and over Zoom or over the phone rather than in person. So these kinds of ways of offering support and receiving support, um, they can be in any form that you need them to be in many cases. I think that. We kind of know where our calling is when we step into the advocacy space for the first time and we think about what we wanna do in terms of visibility and support for other people. We kind of find our niche, you know, just based on what we wish we had been provided sooner as a patient, I think most of us know what was missing for us, the other ways that I have been an advocate in the world is just through this magazine, wildfire Magazine, that receives essays from. Amateur writers that write about their breast cancer experience, that has actually been one of the most powerful ways that I have received support as a breast cancer survivor is listening to the podcast that Wildfire Magazine puts out called The Burn, which tells stories over and over every single week from the voice of the actual survivor who wrote their story in essay form for the magazine. It's powerful, powerful work to share that deeply. And again, you don't have to be an extrovert to write for Wildfire magazine. You just have to write something and submit it and be willing to take the risk of maybe not having your essay printed in that magazine that you've submitted it to. But there's very little risk in terms of being. Known in a public way or a personal face-to-face way. You can go really deep and be anonymous, and you can even write anonymously for places like wildfire. There are also breast cancer blogs, like the one that I write for. It's called Ask Ellyn. And , there are many breast cancer blogs that receive guest appearances and guest writers. And you can write anonymously in those cases as well. And Ellen was recently on the podcast with me and she encouraged folks to send her any form of content. Um, she said, even if you're not a good writer, you can send her an audio file of you telling your story or you overcoming the challenge that is most important to you. And she'll put it on her blog. So the barriers are very, very low, in terms of doing this. And again, even if you only write one essay. Let's say one essay a year for a blog or for a magazine like Wildfire, you can still call yourself a breast cancer advocate because you are stepping up and being public about your support and being public about your story. You're being known as a breast cancer patient. Which is really, it's hard, it's not a part of our tradition in terms of our breast cancer behavior. Um, and you know, in, in terms of the generations before mine, , certainly my mother's generation, but even. The one in between me and her. I think it is more common to be secretive, quiet and dismissive about your breast cancer experience in those generations. And it is becoming super common now in the younger generations to be more open, known and public and articulate about even the most embarrassing and somewhat shameful parts of our experience. And that's really the. The crux of what I'm getting at in this podcast is wanting to hear people's stories, the most painful parts of their stories, how they came through them, and how they have achieved success in that area of struggle. Um, so that other people can hear what it was like and how it happened for them and be encouraged. So, of course, being a podcast guest and on a podcast like mine would be a wonderful way of starting out being an advocate and raising visibility for whatever issue in the breast cancer space that you have struggled through, and I welcome that. If you're interested in telling your story with me, I'll just go ahead and tell you my email address right now. Since we're talking about it so that you can get in touch with me directly. My email address is [email protected], and when I reply to you at the bottom of my email in the signature part, there's a scheduling app that you can sign up right away. And talk to me about what story you wanna tell. So there's not a lot of barriers in that case either. I think a lot of people are really intimidated and think that being on a podcast requires expertise. But this podcast is not that kind of podcast at all. Uh, you don't have to have any kind of expertise except for the story --telling the story of your own body and your own experience going through breast cancer. That is the best kind of expertise that I can find. So I would love to talk more about what you all as listeners are thinking and experiencing and trying on as a new way to do advocacy in your own life. Um, I can tell you what I do right now in terms of visibility and support, um, what I'm doing right now. Uh, throughout the year is I show up to breast cancer events, so I go to as many walks as I can in my region. And I let it be known that I'm flat, flat chested after mastectomy. I do that either by taking my shirt off if it's appropriate in that space, um, which it usually is at a walk, or I wear a t-shirt that has a really large font in clear letters like, and it just says "flat" on my chest. And in a breast cancer event, everyone knows what I mean when I say flat. Um, there's no questioning that. So it's pretty clear that I'm identifying myself as a Flattie and I'm saying, come talk to me if you'd like to. So come talk to me if you'd like to as a step beyond visibility, but wearing the t-shirt is definitely a step toward visibility. Um, I also go to walks and handout literature now, so I, I stand at a table and I hand out brochures and stickers and other information about, especially lobular. And flat closure. So those are my two little niches of interest in minority groups. Um, actually flat closure is not so much of a minority. There are still about half of us that ask to go flat after mastectomy, but it's a perceived minority and it is a choice that is being squelched for whatever reason. For most surgeons these days, they don't mention it as a choice. So because it is under and misrepresented. In the medical space, we see it as a minority kind of cause. So I wear T-shirts also for the lobular community and say, ask me about lobular cancer or ILC. Um. I wear those in the conference settings , or just community settings where a breast cancer contingent is present. So today I just got a brochure from a another breast cancer survivor about a gathering around dragon boat racing, uh, where there'll be hundreds of breast cancer survivors there because they are dragon boat racers or their supporters or families. And so. In that case, I'm going to have to decide whether I'm going to wear my flat garb...
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Good News--No Recurrence! and a New Substack
03/23/2025
Good News--No Recurrence! and a New Substack
Subscribe on: - - Join my Newsletter List here: Transcript: Hello friends and happy Spring. I do not have a guest today, and that might be shocking to some of you who've just started listening to this podcast because for the last five episodes I've had guests and that is really unusual. From the very beginning in season one, I always did one podcast episode with a guest and then followed it up with some commentary and reflection on what we talked about. But for many reasons, this last month and a half has been different. And I've just done guest after guest after guest, uh, mostly because some of the guests had messages that were very time sensitive and I wanted to get their messages out. So, um. For example, Lori, who was the coach for the Dragon Boat team, uh, she wanted to tell her story because Dragon boat season has just begun, and I wanted folks to be able to learn about dragon boating in time to join them for the beginning of the season. At least here in the northwest, the season starts after daylight savings changes. So, um, wanted to get that out. And then this last interview with Christine Handy was extremely time, time sensitive because she wanted to get all of the breast cancer survivors and flatties and. Their caregivers and loved ones into the theater on April 1st, uh, for her screening. And at the moment that screening is sold out, she is trying to get a bigger theater. So if you've tried to get tickets recently and were turned away, you might try again in a week because they may secure a bigger theater within, uh, the man's Chinese theater. Kind of complex of theaters, so, uh, that's something you might keep trying if you really wanna join us there in person. And I have to say that if you're watching on YouTube today, you'll notice that I look very tired, and that's been true for the weeks since I got back from Las Vegas. Those of you who have subscribed to my newsletter and followed me on Substack, uh, you will know that I had a trip to Las Vegas. Usually lasts around five days around my husband's archery tournament there. It's a worldwide gathering of archers, huge tournament that we go to just about every year. And I think the number of anesthesias that I've been through at this point, combined with all the smoke and just general anxiety that is present for me in Las Vegas, especially when I'm staying on the strip, which we did this time, which just extremely tiring and. Reminds me that I do have a small amount of chronic fatigue syndrome, that I do have to, uh, work to get past some of these barriers with fatigue and, and energy loss. So I'm still fighting my way out of that hole. But I'm here because I have so many things to talk to you about. Uh, first off, I want to tell everyone that I did get an ultrasound this last week and it came back clear. So I'd been waiting , post-surgery to get my. Final ultrasound to make sure that there was not still a suspicious lymph node the way that they thought there was. In my last ultrasound, uh, I had a excisional biopsy surgery in January, so I guess it's just been two months. Anyway, I. So I had all the inflammation from surgery. They couldn't go in into an ultrasound until that inflammation calmed down and I just had that ultrasound this last week and it came back clear indicating that it really was never a lymph node. Um, it was probably a complex cyst that ruptured sometime just before my surgery, and that's why there's no evidence of it in any of my, um, my excisional biopsy tissue. So that's good news. I don't have to worry about having a recurrence, uh, which I was pretty sure was the case, but I just had this final step that I needed to wait for and see myself through, and very reassuringly. My radiologist did not even come into the room to talk to me this time, which never happens. That's the first time I've ever not had her come in the room to talk to me after an ultrasound. So that was very reassuring. Uh, so I just wanted to share that news off the bat. And then I just wanted to go back and reflect on all of these lovely interviews that I've had over the last five weeks. Um, the first couple were, as I had told you, they would be, were with a couple of pretty good friends of mine, folks that I see every couple of weeks on average. Um. Brenda is just a local super close buddy of mine that, um, has had a lot of struggles and we've grown close through her struggles. Um, and through our connection through the breast cancer journey, we both went through breast cancer right about the same time, and she had a much longer treatment plan than I did. So she's just come out of her treatment not that long ago. And, um. Brenda is someone who, unlike a lot of folks that I. Tend to shine the spotlight on in my Instagram and other community posts, I find there are some people that are not celebrating their new body after breast cancer. You know, shockingly, of course. No. I think the assumption is that we wouldn't be too happy with our bodies after breast cancer, but. Most of my friends are, and there are a few friends that are still coming out of the trauma of breast cancer, including Brenda, who are not so thrilled with their body. And I wanted to feature someone like that. Um, and I wanted it to be someone I knew well, and that was true in Brenda's case. I know her well. She trusts me, I trust her, and I had her here in person in my home for that interview. And, uh, Brenda and I talked about the contrast of the two breast cancer events here locally that we both went to together, and I wanted to talk a little bit, reflect a little bit more on that and the contrast there. So the first breast cancer walk that I ever went to was also Brenda's first one. It was in 2023 and it was at the zoo here in Portland, uh, Oregon, where near where I live. And Brenda was one person, maybe out of three or four people that I had found for that event online on Facebook, I think. And. Someone I hadn't met before that event. And then there were at least a dozen women that I had met and gotten to know really well at the retreat that I'd gone to about six months prior. And so, but Brenda was a brand new friend that I'd been interacting with online. I hadn't met her in person. I. And she came into that event with a, a sense of exhilaration, seeing all of the energy that the dozen or so of us who were very celebratory of our bodies in that context, it kind of caught her, you know, like a virus that kind of caught on and she caught the, the energy from us. And kind of jumped in with some, some hesitation and a little bit of timidness, but jumped into the, the party basically is what it was. It was a Susan G Komen walk, and Susan G Komen is bringing the party these days. Um, they're much less focused on walking than kind of. Jumping up and down, singing, dancing, being silly together in a lot of their events across the country. Although, you know, in different chapters, they're a little different, uh, from one territory to the next. But here in the northwest, we tend to have a little party. When we go to Susan G Komen walks. And so Brenda jumped in with a lot of energy and we just kind of danced around a lot and had a, a friend of mine was actually up on the stage leading Zumba, and that was such a great memory. There was probably 20. Or so of us Flatties who, um, had gathered in advance and knew that we were gonna be there. And, and I actually choreographed a little video. I was the technically the leader that time, and I did a little video that you can still find on my YouTube channel and on my Instagram. Uh, I, I brought little signs that people could hold saying positive things about their body that went along with a, a song called I Am Woman. That's a pretty recent pop song. And so we did a little choreographed deal and video. That was really fun. But, um, then we had others that joined us who were flatties who could see us. 'cause there was such a big group of us and many of us with our shirts off and, um, some of the, the other flatties and the crowd just were attracted to that and joined us and, and we all walked together in the very short kind of span that Komen allowed for us to walk on that event. It wasn't a 5K or anything, it was pretty short. Allowing for people with disabilities, which we really appreciated 'cause we had a number of those. So, um. In the end, we gathered together, did a little dance and celebrated with the song. And, uh, it was so much energy and there was even like a, a political figure there. I think it was like a state representative that had spoken from the stage and some of us went and talked to her afterward. So it felt like a really significant event in my life. It was a very strong memory. Lots of photos taken there. And I share that with Brenda, who happens to be now the closest flattie to where I live. She lives really close about five minutes away in a small college town near where I live. And uh, so we get together and reminisce about that. But the following year in 2024, Brenda and I got together at the same walk. All of our Flattie friends, the ones that are, that bring the energy, that bring the party, um, had gone to Bend for a flotilla event and were floating down the river that day. And so I just had a bunch of new flatties that were just joining the community, one of which was Avena, who, um, I went to Burning Man with and shared that story. Earlier in the podcast, and I interviewed Avena earlier in the podcast. The, the day of our interview was the day that she invited me to go to Burning Man with her. So Avena was there, Brenda was there, and a couple new flatties were there who also were pretty timid about their bodies. And I was tabling for the very first time at that event in 2024 at the zoo at Komen. And I felt that the energy was so different. People who had not been used to gathering with other flatties before, not certainly not used to taking their shirts off. Brenda and I were the only ones that did that in this case, and only for a short time. I was pretty cold, but also because I was tabling, I didn't wanna scare people away by being shirtless who might wanna otherwise come up and talk to me. With my shirt on that says flat across it, which is a nice more welcoming kind of greeting, I guess to say. Let, let's talk about being flat. And so I did talk to a lot of folks and it was much less of a party, but it was also very meaningful and productive and built a lot more bridges, I think in, in a different way, in a more conversational way, less of a kind of a spectacle making way. So I don't know, all that to say that Brenda and I have a, a very different memory between those two years and I have a different focus now. I'm tabling now for Stand Tall AFC instead of just being there as a spectacle maker. And I feel really good about that role. I. And I'm looking for other flats out there if you're interested to train under me as someone to table at various walks across the us, especially with Komen and the American Cancer Society, 'cause we've kind of partnered with them in a way that makes it more likely that we can get tables with them. So. There's a little call out for those of you who are interested in working with me. And then moving on to the next interview, which I had with, Danyel, who's a, a good friend here locally and is getting used to a metastatic diagnosis and also has a really powerful advocacy platform of her own locally, which is to take pictures of breast cancer survivors and other cancer survivors in her studio. I wanted to talk about my relationship with Danyel, um, kind of in as an effect of my relationship with my mother who passed away of metastatic breast cancer. My relationship with Danyel has only grown stronger because of her metastatic diagnosis. I think because of that tender spot in my heart, uh, recovering from the loss of my mom. I find myself, instead of being scared of, of being Danyel's friend, I'm actually drawn closer to her. And I think for most people, when you learn about someone who, who is dying, who you know, maybe as an acquaintance or as a lighter friendship, most of us will back away. Giving them space, giving ourselves space. It's only natural to do that. But I'm really glad personally that I am not doing that with Danyel. She also lives very close to me, um, two towns over, but also in a town where I am starting to do a lot of my errands and my shopping now. So I'll check in with her when I'm in town, and I've always helped Danyel in the studio. I've always been an eager volunteer to come and help her with other women that she's photographing. So I've played that role in, in her advocacy work, but it's been a scary season for Danyel. She has a scary diagnosis. Triple negative is not the kind of breast cancer that you want to enter into the metastatic phase with. Um, it's, it's a, a hard time and she doesn't know whether any of these treatments are gonna work very well, and she's already exhausted One. As far as we know, she only has this one last treatment that she's on now. Um, that's, that's not even an option you know, there's always the possibility that her metastatic cancer would stop growing, which is another hopeful option that does happen for some folks. So we we're kind of watching and waiting with Danielle. She's still pretty functional. She's not too disabled by her treatment, but she does have mets to the brain, which has been really scary just in the last couple of months. And just right before my interview with her, she found out that she had a brain tumor. So that, that has been scary 'cause it, it has affected her mobility a little bit. And so I will. Let folks know how Danyel's doing. Um, if you're interested in my Substack newsletter, which I'll talk about a little bit later in this podcast episode, but I wanted to talk about Danyel's advocacy work as a photographer and just how powerful that is and to encourage you wherever you are, whether you're a photographer or a breast cancer survivor, to do more of this work. Um. Get into a photography studio if you haven't yet, because it is so empowering to have someone else take pictures of you and your new body and come away from that, and then look at the pictures and to see. How you feel about your new body, um, whether it's playful, whether it's bashful, whether it's powerful, forgiving of your body for changing or for needing the changes. It's just a really transformative experience in, in my. Story and those of you who have the skills of being a photographer, um, even lightweight photography skills can be put to good use by entering this space as an advocate and taking pictures of other breast cancer survivors, um, at breast cancer walks or in a studio space or in a, just a private you maybe outdoor space. That's beautiful. So just wanna encourage folks to experiment with that in your lives. It's been a huge. Huge influence in my own recovery, um, and my own sense of body positivity. And then my next two guests were Lori and Ellyn. Lori, uh, a really powerful leader in the Dragon Boat community. And Ellyn, a really powerful leader in the flat community at large. Uh, someone who's on social media a lot and is well known for her book and her AI tool and her blog. Uh, I wanted to say about both of them actually. Similarly, their stories were both kind of similarly telling a tale of, um, wanting. The most powerful treatment possible, which is very unlike a lot of the gals that I interviewed in season one. I, I just happened to interview a lot of women in season one who did not want a lot of treatment. For whatever reason, they were reticent to sign up for lots of chemo or radiation, and some of them are regretting the amount of chemo, radiation, or, uh, immunotherapy that they were offered and given and. Some of the consequences of that. But in season two, here I am with a couple of gals that are just, they're telling their story and saying how desperately they wanted to be given the most powerful regime of chemo possible. And Lori, in Lori's case, this was like a dozen years ago or so, and, uh. I just wanted, the one thing I wanted to say, coming away from her interview was that you can't really do that anymore. You can't go to your doctor and say, give me all the chemo, gimme everything, load it up, the most powerful chemo drugs that you have and, and have your doctor say, okay, unless. That's what your oncotyping test prescribes for you. So nowadays we have this gift of having an oncotyping test, and it's pretty much practiced across the board. It's standard procedure now to give every breast cancer survivor after or even before. Their surgery, getting an onco typing test to say whether you need chemo or not. And so Lori's story is a little bit outdated in that respect. I don't want to have her story carried forward in a way that is teaching a false truth out there in the breast cancer community in terms of what is practiced these days. Um, she was not given an oncotyping test 'cause they didn't exist yet in her story. And so she was able to ask for a more potent package of chemo, and she compared her story to someone that was reticent and reluctant to have as strong of a package and that person did die. And, and that's unfortunate, but I don't want her story to be told in a way that is misunderstood here. So I wanna say that it is your doctor and your oncotyping test that need to inform whether you have chemo. If you're a new patient just facing all of these, uh, possible scenarios, you don't need to worry that be because of Lori's story. She survived because she argued for stronger chemo or more chemo. That's not the way it works. That's never been the way it works. And now we know why is is because we can see some of these mutations and the way that the cancer cells are acting and working and the Oncotype test is the key to figuring that out, that formula of what you specifically need. There will be more specific tests as we get further down the road in research. Um. And maybe this is a good time for me to talk about research. It's a heavy week for me. I have a heavy heart this week because just yesterday, breast cancer.org came out with a podcast. Updating us on what the federal government's situation and, and lack of funding for the NIH is going to look like for the breast cancer community. And I consider breastcancer.org a very strong authority on this. So I'm taking them seriously when they say that probably by October of this year, there won't be a lot of research dollars left in the breast cancer research world. And that is extremely heartbreaking for me as a breast cancer advocate and as a research advocate. And I don't take it lightly and I don't expect that it probably will change, but I think there is still some hope that the judiciary or the Department of Justice will step in and alter that. Um, I don't wanna talk about the wider world of politics here, um, but I do talk a little bit more about it in my new Substack newsletter. And so if you're interested in following that part of my heart and my concern, uh, you'll hear more about it if you do follow my, my newsletter on Substack, either through your email. Or you can also follow me through their app the substack app and even get access to a little bit more of my political side there. There's a little bit of a social media. Platform on Substack now that didn't exist before. And so you can make it what you need it to be. You can make it just a newsletter or you can make it into a kind of a, a Twitter like platform. And so I'm doing both. And the, the Twitter like platform, it's kind of a little bit like Instagram. Like you can write more words and add more pictures. Um, I've never been into Twitter myself, but I, I see it as being similar to Instagram and I loved Instagram and still, still love it on certain days, but trying to distance myself from it a little bit now. Anyway, you can find that on the Substack app and, uh, follow me there in...
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Fashion Model Gone Flat: Christine Handy
03/15/2025
Fashion Model Gone Flat: Christine Handy
My friend Christine joins me on this week's podcast to tell her story of explant and continued success as a model after her second "mastectomy," going flat and embracing her concave chest publicly on the runway. Her new biopic is coming out on April first in LA and she's invited us breast cancer survivors to come. Shoot me an email to find out how. ...and Subscribe on: - - Join my Newsletter List here: Resources: We spoke about Christine's new film premiering on April first. Here's ! You can buy tickets to , but be sure you can come first because we really want to fill these seats! The organization that Christine and I know each other through is Transcript: My guest today is my friend, Christine Handy. She is a breast cancer disruptor and a fashion model living in Miami, Florida, and now she's a film producer—just recently. Her breast cancer diagnosis was hormone positive lobular breast cancer. And she started out with implants, and that's really what I want to ask her about first today is the journey of the implants and what that story looked like for you as a model, as a fashion model. How did that disrupt your life? C: Well, I think originally breast cancer disrupted my job. That was in fact, I really wasn't planning on going back to modeling until I had implants for seven years and I really did love them, but they did not love me. And so seven years into it, I would say to my oncologist after my treatment, “Why am I still so foggy? Why do I still have joint pain? Why do I still feel this? Why do I have all these questions?” Because they were pinpointing the longitude of these symptoms on the amount of chemo I had, instead of looking at the fact that I had implants. And so I never thought that it was the implants until ultimately I had a MRSA infection in the implant and they were excavated. In an emergency situation, because I almost died the night that they were excavated, I had 104 fever and, um, it was, it had not gone into my organs, thank God, but MRSA is very dangerous. And so when I was, after I lost my implants and I woke up, it was during COVID and there was nobody allowed in the hospital. So I woke up from surgery not knowing what I was going into like they didn't say “you're gonna wake up with a concave chest.” They just were “sign this form that says you're having number three and number four mastectomy,” which was its own trauma and I was like, “I can't be having mastectomies already had mastectomies in 2012 when I had breast cancer” and they were like, “just sign it it's for insurance reasons.” And I woke up in the hospital alone in the recovery room and there was so much grotesque pain and I reached to the middle of my sternum where there was grotesque swelling and I could tell that the swelling was in the middle of my chest and I kind of moved my hands to the left and to the right and there was empty space. And I thought, “I have no idea how to respond to this. I have no idea what the future of my chest is going to look like.” And that was frightening. And about three weeks after I was in the doctor's office, and he said, “you know, there's no chance of reconstruction. Because you've had so many surgeries on your chest, you have very little skin.” We had to take skin because the infection, you know, got into your skin. And that was, that was it. The game over. It wasn't like I knew that aesthetic flat closure existed because I didn't, nobody ever told me that existed. It wasn't a choice. Whether I would have made a different choice or not, I don't know, I can tell you that from a health perspective if I had known the risks of implants if I had known That multiple surgeries and reconstructions took so much time away from my life and my family Then of course, I would have chosen a healthier path And so it was then that I said to myself if I feel this I have this amount of emotional pain and I have a solid self esteem, I have a solid foundation and faith. How do these women that don't have a massive team like I do of women championing for them, have a solid self esteem, which many of us don't, and I can talk about it freely because I used to not. And maybe not have a foundation that I feel is unflappable, which is my faith. What do people, how do they get through this? And that was when I thought to myself, I have to go back to modeling. I have to get into New York fashion week and model on a bigger stage. I need to go to Miami swim week and model in a bathing suit. I need to go to package this up to major brands. And ultimately I did it. It was not without a lot of closed doors. But we opened a lot of the—my manager—and the reason was so that I could say to women my beauty was not dissected because my chest was excavated. My beauty is whole because I know who I am and my foundation is my self esteem and my faith. No one can take that away from me. It has nothing to do with the external. And if I could show that, then maybe other women could heal and see that as well. K: Yeah. Yeah. I just saw it because I follow you on Instagram and I love the content that you share. I just saw an interview that you gave recently and you were telling the interviewer for a news show, I think it was, that you were brave to model. That other women in these situations can be brave and not just brave, but you model self love and self celebration. You're celebrating your new body and you're doing that to show others that they can do that. And that's so much the kernel of truth that I feel was what happened to me. personally when I, after I was flat and had some confusion about what I should think about this new body. And then, you know, becoming a part of the flat community, people shared what was possible and modeled what was possible. And so I just thank you so much for doing that in such a much bigger scale and on such a much bigger stage. Um, I want to go back and talk about what it was like to model with implants. So like, was that awkward? How long did it take you to get used to just having implants, having, you know, appearing breasted in the modeling? I don't know if it was photography or if it was runway at that point? C: Photography. Yeah. Um, you know, a lot of models have implants and that was, I, I never did, which was kind of odd. I felt like I was maybe the oddball out. And so it felt very ok and normal and natural, like, Oh, well, I'm now I'm just part of that club. know, everybody did it in their twenties or even earlier. So I'm just, I felt very safe and comfortable. And I also, you know, part of the reason why I felt comfortable on implants was because I had, you know, kind of a bigger chest when high school and then had some eating issues with my modeling career. And then they were kind of smaller and I didn't always love my chest, to be honest with you. And then I was like, Oh, these implants. I wish I got a small size of implant. I didn't go like big and I was like, these just don't move. They're perfect. They just sit there and you know, I, I didn't mind them, you know? K: Okay. So they weren't lopsided. You didn't get any capsular contracture or hardening of the, the scar tissue around them. It wasn't awkward. Okay. So, and you did have a similar breast size to what you were used to then. C: They were just fluffier and they weren't sagging. K: Was it easier then that you didn't have nipples or did you? C: So my breast cancer was right underneath my left nipple. And so I didn't have nipples. I did have some sort of tattooing, but the tattooing didn't really work on my skin and I scar really well. So it, it was okay for me. Yeah, I felt okay with it all. I, again, I never knew. I just thought that's what people did. They had breast cancer. They got implants. I didn't know any different. K: You did swimsuit modeling still, right? So in some ways without nipples, it almost would be a little less awkward physically maybe to do swimsuit modeling. C: People would say that to me. They'd be like, well, you know, you, you don't need nipple covers. And I thought, okay. K: Yeah. Okay. So you were pretty at peace with the implants until you realized that they were maybe Part of the problem of some of the symptoms you were having? C: No, they were the problem. They were a major problem. K: So you you realized that before surgery then like you knew that was the solution? Okay. C: Absolutely. It just was, it didn't, none of it made sense that I was seven years after chemo, still having all of that, those other symptoms, which weren't congruent with somebody seven years out having that. And, and they said, well, maybe it was the tamoxifen and it just wasn't, it wasn't symptomatic of the tamoxifen. And so none of it was making sense and I was kind of frustrated. then it was like the implants went haywire and I was like, it totally made sense. It totally made sense. Why are we just figuring this out now? I was so frustrated. K: What were the main symptoms that bothered you? I mean, I had really bad kind of a fog, a brain fog, and I had joint pain, which was debilitating. I had inflammation. I just would wake up every day, not sure of How I was going to feel, I never felt good ever. And then the implants came out and I had that excavation. And after the grotesque physical pain went away of that, that surgery, I felt different, like very different right away. K: And then after you went flat how much healing had you gone through before you had this epiphany of “wait. No, I need to get back out there, I need to go to work with this body” or did you wear prosthetics for a little while? Like how did that develop? C: Never, I never owned a prosthetic. I had a prescription for one. I literally looked at it. It was like, I'm never filling this. I never once put a cup on. I never once put a bra on again. Never. K: Why do you think you didn't? C: Because I think I had such a solid foundation with my self esteem and such a solid foundation with my faith that I was like, Okay, well this is now my job to use this pain like I was so used to using my pain for purpose, like, “okay now I've got this job now.” I have to use this to help other people. How can I do that? Well, I've been a more a model for 40 years Duh, how I have to do this. so it was so It it made so much sense I would go back into the modeling agency and also the modeling world. And it's funny because, and I have a post about this today—how there's so many doors that can be closed, but if you keep going, another one will open. And so often people quit in the middle. I first was concave and I went to my modeling agency that I'd worked with for years and said, I'm going to come back to work. They were like, okay, great. then I went in and they said, yeah, we don't think so. it was no, and it wasn't, I didn't take it personally. Like if we can remember that none of this is personal, they just didn't, didn't have my vision. And so I was like, okay. So I called my manager and I said, I need to get back into modeling. I'd like to start doing runway. And she was kind of like, okay, but she's a, she's a champion for me. And so she got me into some runway in just to see the shows, to go attend the shows, and then I would walk up to the designers and say, my name is Christine Handy. I'm a long time model. I had breast cancer. I have a concave chest. I'd like to work with you. I'd like to walk in your show. We can help a lot of women. And people said, yes. And then ironically, after I partnered with, well, I did various designers in New York fashion week. I did Miami swim week. And I did a partnership with Victoria's Secret. And then I got this modeling job that approached me and said, we want to sign you. And I thought, isn't that interesting that it's not the same one that I'd worked for, but how that door was shut because this modeling agency was coming in and a much bigger agency, a much bigger platform. So that's a good lesson of just wait, be patient, keep going. K: So I know in your like 20s and 30s you did like The Gap and J. Crew and a lot of like fashion magazine modeling. And it sounds like when you came back, you eased your way in more through runway, like live modeling. What do you like better? Do you enjoy one over the other? C: Um, you know, I felt, I feel very at home in front of a camera because I started when I was 11 years old that's just kind of what I did. And so when you have a job that, that spans decades, you're pretty, usually pretty comfortable in that space. so when I did runway, it was a little bit uneasy for me. Because it's, you're really, you're kind of in front of, you're meaning you're in front of cameras, but you're in front of a live audience. I'd never done runway before so it just took me about a month before New York fashion week, before the first time I did it, and I would practice every day cause I didn't know how to walk in a runway. And I wore really high heels because you never know what kind of heel they're going to put you in. And I needed my calves to be able to handle whatever slingback shoe they were going to put on and maybe not stable. I worked out in those heels. I went to the grocery store in those heels. I walked on the boardwalk in those heels. I wore those heels 12 hours a day. Because I wanted to make sure I was, know, going back into the modeling space, doing something completely different, but it was my job show up like I had been doing it for decades. And so I had to train my body how to do it. And once I did it once in New York fashion week, I was like, okay, I got this. I can do this. Then I went to Swim Week in a bathing suit with a concave chest and I was 51 years old. K: And no regrets? C: God, I loved it. I mean you could, if you read the messages that I got from people all over the world, you would be so glad that you had that moment. Next to my, where I got out of bed one day, I was like, I got to go back to modeling. And it was just that fleeting moment. And I could have just said to myself, “you know what? You don't have to do that. It's you've got other projects and why put that on you? You're not a runway model.” There's so many reasons why I could have just said, nah, but I thought this came from somewhere. This, this spark came from somewhere I have to follow through. And, and by the way, if. If the doors, other doors didn't open. If I didn't get New York fashion week, I didn't get Miami swim week and I didn't get big brands. I would have been like, okay, I tried and it wasn't meant for me. So I'm going to go down a different path, but it was meant to happen. K: And now in your 50s, you've got regular modeling gigs still, or do you just do the fashion weeks now? C: No, no, I turn them down. I've turned jobs down all the time because I'm so busy with the film and I'm so busy with other things. And so I, will I go once the film is launched, will I go back to more modeling? Maybe I think that, you know, I've done a lot of speaking recently internationally, and I think that my heart. Is kind of going in the direction of being in front of a stage in front of people. And so I think once the movie is launched and settled, I think I'll go, I'll start more speaking. K: Okay. I want to talk about the film, but one more question about your modeling career. I'm really curious to hear now that we have these dove commercials that are setting new standards for body positivity. We have shapely models now all over the place, and we now have some breastless and Uni models, uni-boob models. Are you getting people knocking your door down? Like, is there more demand? Like if you didn't have the film would there be more demand that you then you could handle because now we have a new standard In the beauty industry. C: Yes, I think for sure. I, you know, looking back on my modeling career, when I was at the height of my career, maybe at 21, 22, there was nobody doing this and there was not, there wasn't different body types. There was one, but that was 30 years ago. And so the change has been significant, but it takes people a lot of courage to make those changes and they would have never, no, none of those big brands would have partnered with me had there not been a shift already. Nobody would have said yes to New York fashion week for somebody my age with my body type. If the change had not started a while ago. And the only thing that I could do is try to, you know, permeate more change within the industry. And I, I'm, I'm certain I have, you know, showing up with a lot of courage and, and I love talking about courage because so often I don't wake up with courage every day. None of us do. But if we can see somebody with great courage and we can borrow their courage, maybe that gets us to the next day when we have our own courage. So by me modeling flat, if that gives somebody courage, then I'm lending that courage. So that's that person can then use that until they get their own courage. And that's why I think women championing for each other and elevating each other. We all rise together. There is no competition. There's no ceiling to how much we can help people. when we do it collaboratively and collectively, we all rise together. K: Yeah that's the quote I was reaching for. “You can borrow my courage.” Thank you. We've all borrowed your courage at this point, um, and I think on Instagram as much as in the public sphere. So thank you for that. Who do you give credit to for the beginning of this change that's happened for body acceptance and in the industry? Do you see where it started or can you give credit to someone before yourself? C: You know, I, I think it started with the... I don't know what the right, it's so hard these days to be politically correct on what language to use, but the plus size model was the first to change it. they were the renegades and I give a lot of credit to them. And then it was these other subgroups, um, that came after that. So I think they started it. Yeah. K: Okay, so the women themselves, not, not the industry starting it, but the women pushing for it? C: I think the plus size models did, had an enormous impact on the modeling industry and on the fashion industry and on marketing, the marketing industry. I, yeah, they did an amazing job and, and I think they, they paved the way for other people like myself to come in and go, okay, well, what about this subgroup? K: All right. Well, when I first met you, maybe a couple of years ago, year and a half, two years ago, you gave me your book, uh, you sent it to me in E format and I read it right away and I was so amazed. I loved it. It's called Hello Beautiful… And it's. Oh, Walk Beside Me, right. Sorry, the film is called Hello Beautiful. Walk Beside Me was your book, and Walk Beside Me was, I feel like it was part one of your story, and maybe Hello Beautiful is, is picking up where it left off, because it's, they're pretty different, I think, but what I remember about your book, and it's been a while since I've read it, but is your community of women friends that you didn't even realize the power of. They held you up in times of deep, desperate weakness. Um, you had a health, a major health struggle before you even had breast cancer, um, lots of pain, lots of physical pain. and working and fighting through that. And you tried to do it alone, and you insisted on doing it alone for a while. And then you realized you needed help. And the book and the story is such a beautiful example of relying on your friends, your women friends, and specifically for you, friends with a deep sense of faith in a Creator-God, you know, the God of the Western religions. You really transformed through that story, and you showed yourself to be a different person at the end of it, um, and of course, none of us knows what this new film is really going to tell us, because...
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Asking Ellyn about Breast Cancer
03/09/2025
Asking Ellyn about Breast Cancer
My guest today is a breast cancer advocate who uses her voice and her writing to walk alongside new patients in so many ways--she has a blog, a memoir, and now she's got an AI companion for those who haven't found a human connection yet, to process their breast cancer experience with. Her web site is called "AskEllyn.ai" and that's where you can find all of her offerings. Ellyn wrote her story of going flat just a couple of years ago while sitting in the chemo chair. Today she's collaborating with functional practitioners as well as brand new breast cancer patients to put out a community blog full of collaborations. I love what Ellyn's doing in our community and I love her openness about all of the challenges she's overcome. Subscribe on: - - Or watch on YouTube: Support A Breast Cancer Diary Podcast by making a donation here: Join our Newsletter List here: Find Ellyn's blog and AI tool at https://AskEllyn.ai Kathleen's AskEllyn blog entries are here: https://askellyn.ai/?s=recurrence and here: https://askellyn.ai/di-indol-methane-and-sulforaphane-and-breast-cancer/ The AI breast cancer bestie story is here: https://youtu.be/2euyqULTvFc?si=XR-C1lwl-yu_k68N And Ellyn's other podcast interviews about breast cancer are here: https://youtu.be/1xiNRT_ODsI?si=lZUbk0jX9g3lJ41l https://youtu.be/iyMI5qAKKBA?si=CHzGd7g8VsBaoXCm Transcript: My guest today is Ellyn Winters Robinson, my first international guest. She's from Waterloo, Ontario, originally from Ottawa up in Canada, and she's the creator of the AskEllyn.ai blog and AI tool or companion. We'll talk a little bit more about that later. She's the chief marketing officer at Ignition Communications, and she mentors tech startups, and she's been doing so for many years. She was stage 2b and she had ductal carcinoma. Welcome Ellyn! E Oh, well, thank you for having me, Kathleen. K Yeah! Yeah, so you and I have been partnering on the Ask Ellyn blog. I've been a guest blogger. This is my first time guest blogging for anyone and it's been such a nice experience. E I'm loving having your voice and your advice as part of this, this thing that we're building. So very K Aw, thanks. Thanks for being that safe place for me to enter the breast cancer world as a nutritionist. It's a scary thing having had breast cancer. You know, been in the breast cancer community for two and a half years now and kind of zipping my lip about nutrition because it is such a triggering topic for people. I feel like your blog has been a really welcoming venue for me to talk about that in a careful way. I am very aware that it is full of triggers and self blame and shame. So I'm trying to be very, very careful and sensitive and permissive in all of my nutrition advice. I know you started with writing your book, which the name of your book, I love flat, please hold the shame. So that was your first foray into the breast cancer kind of public life. Um, I, I was just reading your book this week and really enjoyed it. So that was your first step. And then how did it, how did everything else kind of follow after that? E I don't know if your, if your followers would know, or you know about something called the butterfly effect. It was actually sort of a concept that was developed for weather systems, like one little weather system can kind of trigger a massive storm somewhere else. it's also, it's a good way of describing what's happened to me, which is just this domino effect of all these sort of, you know, one thing happens, which then leads to another. And it's just been this really crazy journey over the last two, two years, almost three years now. So I'm coming on my three year diagnosis anniversary in March and I, you know, I think where it started was, as we all do, you kind of go through this and it changes you forever and you just want to start giving back. just want to help that next person not have to, you know, go through this alone. And that's really where the, the start of my book kind of came from was I actually wrote it while I was in chemotherapy because I'm a storyteller. That's what I do for a living. And so I was like thumb typing the book as I'm going through chemo, uh, my phone, and I just wanted to tell a really simple story of somebody that was going through it, uh, that was really relatable and not sad and fun and funny and kind of encouraging so that somebody at the end of it would go, okay, okay, you know, there were hills and valleys and bumps along the way, but she got through it. I can get through it. And that's the feedback I've had from the book, which is great. And then, you know, even before I put the book out there, I ended up having this sort of chance encounter with another tech startup founder that I work with. We weren't even talking about breast cancer, but it came up in the conversation and then he was asking me a ton of questions and I sent him my manuscript. And lo and behold, he used that as the basis to create Ask Ellyn. And so, suddenly I found myself with a digital version of me who, you know, this AI knows my story and. She is really smart and understands everything going on in the world, but she also, you know, has all of my personality and experience and emotional responses. And so we launched her, that was about a year ago. She's just had her first birthday in October and, uh, and she's out there now and now I just learned in the fall that she's been selected to be part of something called the City Cancer Challenge, which is organization out of Geneva that is delivering digital navigation solutions to countries in the world, low to middle income countries. And so she's now, too. So, yeah, it's just been this really crazy, you know, ride. So, you know, it's kind of one of those advice I always give to a person when I sit and mentor them is. You know, don't get so caught in your course that sometimes you miss these other opportunities that are kind of, you know, floating down the river toward you. And that's exactly what's happened. It's like, you know, okay, I say yes to this. And then all of a sudden it leads to something else. So, yeah, it's been a really crazy, crazy, crazy ride. K Wow. So, okay. So you did the book first and it was published. The manuscript was then used as kind of a full download to create Ask Ellyn the Robot or AI Companion. And then you started the blog after that? E Yeah. So, we launched Ask Ellyn in the fall and I don't have any marketing dollars to put behind this at this point. That's just all a very much a labor of love. So I thought, what if we looked at breast cancer sort of through a lifestyle lens? So fitness and nutrition and wellness and mental health and intimacy and relationships and family and fertility. so that's what's starting to come together and it's really cool. I've had women from Ireland. I've had, you know, I haven't had, um, uh, contributions yet from some of them, but people have reached out from South Africa. It’s just really neat that I'm sort of getting these international voices that are starting to come together. And then there's folks like yourself that can be because you, you have this, you know, expertise that's really important. I'm a big health fan. I, you know, I believe in, you know, fitness and exercise and eating well. Those were all things that were really important to me before I even got diagnosed. And so, um, you know, having that expertise women can tap into, but in a, you know, empathetic, I really get you kind of way versus this. I'm a doctor and you're a patient and you know, it's just a different dynamic. Just women talking to women and very wisdom focused because that's where much of the good advice I was getting was coming from these other women as I was going through this, right? K I found you when you were just launching your book. I found you on Instagram. And so I always identified you primarily as a flattie and your, your identity around being a flattie, um, which you have a beautiful body by the way. I love the photos that you've put online and I thank you for, for sharing something so intimate, um, but yeah, getting to know your blog, I see that you are really trying to be a lot more of a generalist in terms of your, your outreach and the material that you're putting out on your blog. You're not exclusive in terms of your identity as a flattie, but just really trying to support women. E You know, when it comes to, you know, breast mound reconstruction or any kind of reconstruction, because I consider, you know, being flat a chest wall reconstruction. I want, I've always said I want flat to be an option and I want it to be presented as an option because so many women are, I was completely unaware that that was even a third choice and it was a girlfriend of mine who told me about it. And so I would like to see that changed, but you know, at the end of the day, I want any woman going through this, it's hard enough to go through this, but I want them to feel really good and comfortable. about whatever decision they make. So I always say, you do you. If you want to have, know, implants and go that reconstruction route, I know lots of women who've gone in that route and are very happy, and then some that aren't. And then I also know, you know, women who've gone flat. Obviously, it's a big, happy community out there. And then there's also women who've had DIEP flap surgery as well, and are very, very happy with that. So I'm just like, no judgment here. I will support you. And so I definitely want to incorporate. those voices, those options into the into the narrative of the blog. Yeah, so it's not just about being flat. I'm really happy that I made the decision I, I made. I was watching, the home edit woman, Clea Shearer, who's now having her 8th surgery and is probably going to have a 9th, on her journey toward breast reconstruction. And I'm just like, I just wanted, that was my reason. I just wanted to get on with my life, you know, I don’t try to be strident or anything else. I wasn't trying to make a statement. I just didn't want to sign up for tons of surgeries. So kind of, you know, found, and then I, the, the photos that I took, that was just me kind of trying to come to terms with. who I was at that moment, I, you know, my body looked different. I was bald and I just felt the need to kind of capture that place in my life, uh, so that I wouldn't forget it. And yeah, I, I love those images. I love them. K Yeah. There, there's a lot of joy. No. Yeah. So when you said in the title of your book, Hold the Shame, it is such a powerful, powerful statement. Is that in reference, when you think about your own story, is that in reference to your experience with your medical practitioners at all or the social community? Where, where did the shame come from in your story? E It was really an observation, I think more than anything. I was pretty comfortable with the idea of going flat. Um, I was pretty firm in my decision was pleased when my surgeon, like when I took my bandages off and I saw my scars. I was never really in love with my boobs quite honestly. I was a D cup before. Even if I had had reconstruction, I probably would have gone a lot smaller. I was probably more ashamed of myself and more hard on myself before I had breast cancer. Then, as I went through this, I started seeing women that were going through the breast cancer journey were encouraged to be ashamed of themselves. It's almost like the dialogue is, Oh, you've had a mastectomy? Well, don't talk about it, and hide it away. Or, you've decided to go flat? Well, that's like, you're now disfigured, so let's, you know, hide that. And I just, that bothered me to no end, and then I see so many women expressing shame, shamed for their decisions. I fight against my own sort of currents, which kind of might pull me back into sort of those feelings and say, no, no, no, I owe it to the world to kind of be a lot more, public and, you know, within my own sort of comfort zone. But, um, it's important to me that I'm not ashamed and that I not, um, you know, kind of encourage that behavior anymore. So that's really where it came from was, you know what, we should not be ashamed of any of the choices that we make. Um, as women, we should never be ashamed of ourselves in any form. K Yeah. Definitely. I remember reading that your surgeon was concerned about your husband's opinion of what you were deciding to do in surgery. E Yeah, he, he was, um, mean, my husband was present for all the conversations. Um, it was, it was a fairly light comment. Um, I think that's, that's even more so, I mean, there are surgeons that explicitly turn away from their, from the woman, the patient and ask the man's opinion. Um, that wouldn't have flown very well. Um, but, and I was pretty in no uncertain terms, made sure it was communicated to my husband that this was my body decision and that he didn't, you know, if he supported me, then he would support me sort of thing. So, um, but yeah, I mean, I think my surgeon was like, he was just a little taken aback. I think when I proposed the idea of going flat and I remember him sort of saying right at the outset, Cause I had like shed 10 pounds out of stress and, you know, was looking pretty lean and I remember him saying I would "look spectacular with implants." K (Mouth hangs open, silent) E So it was just kind of, it was kind of a, it was just a guy thing, you know? but you know what, in the, in the long run he was actually really, really good to deal with and was very, very supportive and understanding of, of my decision and I think helped both my husband and I kind of navigate our way . You know, just, just, just through this, whole change. My husband's not a guy who, he's, he's not a guy who deals with change well. At any, in any form. Like, going on a holiday is, it freaks him out. Like, he doesn't like change. And so, having to deal with, uh, you know, the woman that he's lived with and slept alongside for, you for 30 years look different. That's been a really, it's been, it's been a really challenging thing for him. he's, you know, he's continues to work on it. So it's just, yeah, it's, it's a lot, it's a lot, you know, and then you add into that just the fear and the emotional response of, you know, I was never supposed to get sick. Like that's not supposed to happen in the family. I don't think there's nearly enough supports for the guys out there, which is also why I wrote the book. Like I love to hear when women who've read it go, I've just given it to my husband to read. That makes me feel really happy. because the guys are really lost and they, you know, we, we find each other, they won't talk to anybody. So, um, you know, I, I'm, that makes me so happy. Oh K I'm glad that you included your husband in your story. I've written my story down. I don't know yet if I'll publish it or if I'll just hand it down to my nieces and my own folk, but I was really reluctant to talk about my husband because it was such a tender time for him. It was a time of such emotional vulnerability. I really appreciated your including your husband's response, especially you talked about his response to your first photo shoot after you went flat. Um, and that he really struggled with the fact that there were some very physical, um, objects in the world, you know, out there that could be, could be spread around about you. And that was a very private thing to him for your body to be photographed in this intimate way without, you know, a top on, E He was, he knew I was, he knew I was doing the photo shoot. Um, if he quite knew that how, you know, raw it would be. Um, um, I think where, it got a little, where he got mad at me, was, uh, when he found out that the photos ended up in People Magazine. K Whoa, I didn't realize that. Yeah. Okay. So what was his response? E Uh, he got pretty mad. Anyways, he got over it. He got over it. I, I, I argue. I'm like, look, I, I'm so I'm topless in People Magazine. I'm like, I don't have a top. Anyways. I think it's been interesting as I've kind of gone through this and I've gotten out there and it's interesting when you know you'll be out somewhere and somebody will come up to you and they're just like I want to thank you so much or you made a real difference or whatever and if he's present for that it's like all of a sudden he kind of sees it from a different from the outside in and I think it's a little easier for him once he kind of and you know his initial reaction is just to kind of lose loses not a little bit about it but he He eventually kind of comes around and realizes where I'm coming from with this. It's just, it's just hard. It's just, it's just not his nature. He's an incredibly private person. Um, but again, it makes me so determined when I do get, you know, women saying, thank you so much for being open and or I made my decision to go flat because I saw you and you inspired me. Um, you know, that, I mean, as I say, I, you, you do you, but you know, if I can help somebody along on that journey, then that's really cool. Yeah. I just got really lucky. My surgeon did an extraordinary job, extraordinary job with, with, uh, with my incisions. I am so perfectly flat. There's not a dimple or a or anything. And so, you know, I really drew the lucky card. K Yeah. I was really impressed. So those photos in your first shoot when you were totally bald, how far out from surgery were you? E A month and a half. K Oh my gosh. Your even your incisions looked beautiful. Wow. E It was done on May 31st. those photos were done mid, mid August. K Yeah. That surgeon is an artist. That's amazing. E He's a general surgeon, too. And I think he studied under her. So you only had one surgeon, here in Canada, of course, you don't, it's not like in the U. S. where it's privatized and you can kind of shop your things around a little bit. You know, you kind of are just assigned, a surgeon. Here, in, in the Waterloo region where I live, it's a smaller community, just, uh, about 50 miles outside of Toronto. And so, um, you know, obviously our health care, our hospital system is much smaller, and I think there's maybe three, surgeons who do breast surgery here in town. And yeah, there's not that many. And one of them just recently went on maternity leave, so there's even less, you know, so. K Okay, and you said that you had chest wall reconstruction. So does that mean that your surgeon took some of your extra skin and used it for padding in your hollow spot? E No. I didn't even have hollow spots. I just, uh, you know, I, I've always worked out. So I've got some good, good, nicely K Pecs? E Yeah, he didn't have to do any fat grafting or anything like that. It was just, he used stitching, like the stitching he used was Oncoplastic. So plastic surgery type stitching. So it was all folded under. He didn't use any staples. Yeah, and you know, and the other neat thing is, I had surgery at 2 o'clock in the afternoon and I was home here in the house by 7. 30 in the evening. Yeah, so he did a nice job and he did it fast. Because I was home by 4:30. K Wow, that's great. Yeah, that's true of me too with my Goldilocks. People think that Goldilocks is more involved, but it's maybe an hour more total in, in the OR. It's not that much more involved. Oh, good for you, Ellen. I'm, for our viewers on YouTube, I will definitely get some photos of you to put up so that people can see just how beautiful your incisions were even just, oh my goodness, less than two months out of surgery. That's crazy. I can't believe that. E Yeah, yeah, yeah. Yeah, he did a really good job. I just did a flat fashion show with the flat out love folk, um, down in New York. And my daughter went with me and I ended up sort of pulling an outfit or I was assigned an outfit that was actually covered up. I wasn't...
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Dragon Boat Paddling after Breast Cancer
03/02/2025
Dragon Boat Paddling after Breast Cancer
My new friend Lori is an amazing advocate for the power of exercise oncology and she's a wonderful hostess and educator here in the Northwest for those who want to try dragonboat paddling. As a 17 year survivor of breast cancer, she's met a lot of other breast cancer patients and her insights are so clear around one big value: just keep moving. I'm looking forward to having her back for a part two discussion. This was not enough for me! Don't forget to rate and review the show and if you want to enter for a prize for doing so, email a screenshot of your review to me at Subscribe on: - - Or watch on YouTube: Support my work by making a donation here: Join my Newsletter List here: Transcript: My guest today is Lori Godfrey, another local breast cancer survivor in my own community. She lives in Banks, Oregon, and she is retired from her role as senior vice president at KeyBank. I wanted to talk to Lori today about her experience on a team of dragon boat paddlers called the Rose City Rockets. She is a breast cancer survivor with a history of a diagnosis of stage 3B. Ductal breast cancer at age 49 in 2008, and she has not had a recurrence since. Welcome, Lori. L: Oh, thank you so much for having me today. Really enjoy it, being here today. K: Yeah, and for those of you who just watched my YouTube version of the interview with Danielle in the last couple of episodes, Lori is featured in that, in those gorgeous photos that we had as the montage in the background. So you might recognize her from that. So Lori, tell me about your experience joining this local Dragonboat team and what that's been like. How did you find them? How did you find out about them? What has that been like for you? L: My favorite subject, so I'm glad to be able to talk about it today. So the Rose City Rockets are an all cancer dragon boat team that was established just last year, officially in 2023, but we were on the water for the first time in 2024. I'm actually the founder, not only the founder, but the head coach for. Rose City Rockets. I started dragon boating with an all breast cancer team 14 years ago. And that's the Pink Phoenix dragon boat team that's also located here in Portland. They were the first all cancer, excuse me, all breast cancer team in the US. They were the second to be established globally. And that started a great big trend of women getting on boats for the first time in their lives, which was really my experience. I met Pink Phoenix, as I said, so many years ago, here in Portland at a Susan G. Komen walk. And they had a booth, I went up to talk with them, and within the week I was on the boat for the first time with them. That started a great, um, really a lifelong relationship. change for me. Um, I had been an athlete my entire life and was really felt very sidelined by my breast cancer. And that experience alone was what, and has kept me going in dragon boating, is that knowledge that I'm a lifetime learner, I'm a lifetime athlete, I'm looking for things that I can do. Those that have had a breast cancer diagnosis some 20 plus years ago given different experiences. information than women today. Previously, they were, uh, all concerned and still are concerned about lymphedema. So women that have breast cancer may have massive, uh, surgeries, obviously a mastectomy being a primary one. And when they do that kind of surgery, you know, you have these scars and these scar tissues that are there afterwards. And they're very difficult to break through and the lymphatic system starts to, um, get compromised, obviously. And you start, you can get lymphedema. So women were told, don't do repetition, don't do repetitive, uh, repetitive motions and no more vacuuming, no more tennis, no more golf. So some of those sports that women would be able to do for a lifetime were no longer. available to them. So, uh, Dr. Don McKenzie, who is out of Vancouver, B. C., um, started a clinical trial, and his clinical trial was to establish and determine if women that did a repetitive motion, such as in paddling, uh, if they would have lymphedema, if they would have a recurrence or an episode or a flare of lymphedema. So, they pulled together these women, approximately 24 of them, to be in that first clinical trial that also was a team. Dr. Don happened to be a paddler And so he trained those women to be in a competition, had them on the water. They competed. He gathered the information that he needed and then when they were finished, attempted to disband them. And they refused. Basically, they were having the time of their lives and they said, no, we're not going to go. Thank you very much. So, that first breast cancer team, uh, called “Breast in the Boat” and they're in Canada, in Vancouver, BC. And there's lots of that have found breast cancer, excuse me, um, paddling through breast cancer survivorship through, uh, just that support group that's there. So that's how I started. I began as a local paddler and from there I was, within a couple of years, became what's known as a pickup paddler and a utility paddler and I started paddling with other teams around the area and then regionally and then one thing led to the next and I realized that Dragon Boating wasn't just happening in Portland, it was happening regionally, it was happening nationally, it was also happening globally. And that'sreally what changed my life, was those global outreach opportunities that I've been able to do via paddling. I've been able to make all these connections. with other breast cancer survivors throughout the globe that have really been life changing. K: That's great. So, you started doing it on, like, a weekly basis? Monthly? Or is it seasonal? How does it work? L: That's a great question. So I think a lot of people, especially here in Portland, if anybody's listening that knows Portland, knows the Rose Festival boats and the Rose. Yes, I was a paddler. I've done dragon boating before. And what they're referring to typically are the Rose Festival boats that take place in June and where the fleet comes in and we have it part of our Rose Festival celebration that we have here in Portland. that's all that I really knew about, um, the Rose Festival and about dragon boating happened to be that particular event. But that's not all that it is. That's a unique, very stylized boat that is not really used for anything but a festival. There are racing hulls, long canoes that we use globally. And so I started with Pink Phoenix. Uh, we paddled Monday, Wednesday, Friday. Also once, excuse me, Monday, Wednesday, Saturday mornings is Pink Phoenix schedule. And so it was three times a week. And so I just plugged into that experience three times a week. Never miss practice. Did it while I worked. Um, they work, they practice in the evenings. You know, it would just change my whole life around to have a block of time in the evenings that I wouldn't be disturbed. And that was the greatest thing about dragon boating for me was the quiet. I was able to take my phone, put it on silence for the evening. Get on the water and only be responsible for myself and my team. And listen to the water, listen to the air, experience being outside, and being on a great big huge river, that's really pretty demanding. And then learn a new sport as well at the same time. So it was, there's a lot to take in when you first start dragon boating. K: And so, you started on the Willamette. Are you still on the Willamette? L: Yeah, still on the Willamette. So, I've paddled all over the globe, and so that's taken me on to both rivers, like our Willamette. Also, I've paddled on lakes. There are lakes all over the world that we paddle on as well. And the ocean. So there's three different ways that we get on those, each one of those. of water are, have different demands. there's a couple of different styles of the stroke that happen, coast to coast. So you learn a style of stroke, and then you get proficient at that stroke. And it's interesting, as a Dragon Boat coach Um, I've learned that, and especially as a paddler as well, that there are so many different pieces of a particular stroke. It seems like it's one motion, but it's actually broken down, I think at least 20 different pieces of that particular stroke. Just like taking a swing in a, a golf swing or a tennis swing. It looks like it's one motion, but there's a lot of different things that are taking place along the way, foot placement, head placement, uh, velocity, just all kinds of ways to change what that stroke looks like. K: I'm dying to ask, how does it go for a newcomer? Does it take long to learn these things? L: Well, it's interesting. Um, some are very quick at it and some not as quick. So being athletic is helpful. I think the people that struggle the most are those that have come from as a kayaker. So they've come to us as a kayaker and there's a particular way that you stroke as a kayaker or that you do not stroke as a paddler. So there's sometime muscle memory. It's a real thing, right? We learn a muscle, um, it has a particular memory when you go to pick up a blade in the water. You may want to do it a certain way because your muscles remember that. it takes quite a bit of time to get, to build a new muscle memory over an old one. I think it's easier to establish a new one. So, kayakers tend to have a little bit more of a struggle. But they're comfortable on the water, so that's a positive. I learned very quickly. And, so I'll say that in fairness. I learned very quickly how to stay in time and how to stroke. And I continue to work, here I am 15 years later and I'm still working at particular pieces of my stroke. So it's never done. I worked at one element of my stroke for three seasons. every time I picked up my blade, every time I was in the water, I was working on a particular aspect and it took me three years to own that particular aspect. I know how difficult as a coach, I've learned how difficult it can be for some paddlers to pick up certain elements, but it just takes a lot of patience is what it takes. K: Yeah, makes sense. I'm really invested in getting more women out to do this and so I want to ask, is this like a normal sport where the coach is going to pressure you to perform at your absolute, you know, top performance and be extremely competitive or is it more about the social aspect and just being together? L: That's a great question. I think we get both in every, every time we're on the water. I get the social aspect, which is really not why I came to paddling. I came to paddling for the physical being. I wanted to do something and it really intrigued me that it was, had a breast cancer wrapper, but it was the sport at the gut of it. For me, that's really what it still remains is it's the sport first and then all this other stuff that comes with it. What comes with it is. It's simply the nice casual conversation I have with a woman that's going to be my bench mate that day, that may sit with me, that walks down the gangplank to get on the boat. We hug like crazy. We cry like crazy sometimes when somebody has difficult news. we share in the good news and we share in the bad news with each other. Um, the new trend that's happening across the globe now is a new trend which is the all cancer paddler. And so breast cancer paddlers have been able to be on the water for so long, for almost 30 years. Many times when I've come off the water successful as a breast cancer thriver paddler, others have asked me, spectators have asked me, ooh, I want, how'd you learn to do that? I want to be a paddler. How can I be on your team? And the news we share as a breast cancer paddler is, well, good news is you don't qualify to be on our team because it has to be all breast cancer survivors. But they'll say, well, yes, but I have lymphoma or skin cancer or, uh, you know, name the number of cancers that are out there. And what about me? It was the what about me, listening to people say what about me, that encouraged me to start another team that allows for all cancer as well as for men to participate. And that's really what I'm here to recruit to today is that we would love to have more women and more men for that matter, but more women in particular that would like to join the Rose City Rockets and just enjoy the camaraderie and then learn the sport. You feel so, um, empowered. It's incredible. I, that experience I would want for anybody, no matter breast cancer or not. K: Yeah. So how does someone join? Do they just show up and start? L: You can, you can. It's better to have a mentor like myself to help you get rolling. So if they contact me, I'm happy to get them all the information that they need. But basically for Rose City Rockets, we paddle on the Willamette. We begin March, which is coming up very soon. March 11th is a Tuesday. We wait until a daylight savings has happened and kind of brighten the sky up for us in the evenings. So we're there in the evening. We meet at 5:40 PM. We have 20 minutes of warm up then we get on the boats and I'm there with you as we have other coaches as well. So it's my self. I'm an advanced United StatesDragon Boat Federation Advanced Level Two Coach. Um, there's not very many of us, um, here in the West Coast in particular. My husband's also an advanced coach. And then we have other coaches that are on our squad as well that can help, especially the new paddler, get comfortable and teach them some of the very basics. You can't be wrong. You can only be right. We find a lot of wins. Uh, that's one of the things that I get complimented about specifically. is about how I'm able to help the paddler, find that value in what I'm teaching, be able and feel comfortable enough and confident enough in trying it, and failing. Cause you aren’t always successful. Sometimes we fail at the things that we're trying, and that's okay. We can't expect, all of us cannot come to a new sport, or a new anything, and expect mastery. K: Absolutely, if a woman was looking at joining, let's say this coming March or, or next March, what muscle groups would she want to start working on? Would she do pull ups, push ups, tricep dips? L: There's a great number of exercises that we have that are specific to paddling and you've hit on most of them. So what we try to do is keep our hip flexors. Moving and flexible. So we do some great squats. We might do some hip flexor work prior. You know, some stretch, some static stretching there. And then get into more dynamic moves. So static is you're holding a stretch. And dynamic is activity, right? For those that don't know the difference. And so if you were to start out with, exercise bands and work on simply stretching above your head, stretching behind your shoulders, getting your shoulder blades down into your, back pockets is what I call it. So basically working on that back, working on back muscles, working on your shoulder muscles, um, lats, core um, your, your core. That's probably where you're going to go. It is a full body workout. So we're going to go literally from toes. To the head of your top of your head is going to be working when you're in the dragon boat sport So we'll work on those things. A lot of people think I got to have strong biceps Or I have to have strong upper body, um, physical strength in order to be a good paddler. It's not true, but I will say this, over the years I have developed bigger shoulders and bigger, yeah. So I have bigger back muscles and bigger shoulders than, than the average woman probably does. And certainly from my body style when I started, I've changed. My body has changed. To, in a good way. In a positive way. K: So it sounds like, more like a crew kind of setup where you're actually using your legs to push when you're paddling. Okay, I didn't realize that. L: That's right. So we have contact. It looks like we're sitting there, but actually we have a specific way that we place our feet and we utilize pressure on the bottom of the boat to do to go forward and to go backwards. You know, so we basically are doing this rotation while we sit, we rotate out to the catch to put our blade in the water, and then we do you rotate what we put pressure in the water to pull the boat forward. And so it's basically that's what we're looking to do is how do we pull the boat forward to get to the finish line. There is a lot to do, to paddling. I would say, I would, for a new paddler, try not to get too excited about those details. let me talk about clothing. So, of the things that people like, need to be experienced in gathering together before they come down to the water. So they're going to get physically, you don't have to be a physical specimen, a fitness specimen, you don't have to come out of the gym and be on the water. You can come to us just as you are. And then you're going to, you'll learn quickly about where your deficits are. And we can work on building those up. but everybody's got them. So don't feel like, well, mine's worse than everybody else's. It's not the case. Um, so you come to the water, dressed in layers. We use a lot of dry fit. So that's anything that you can get wet, and that can dry. So we use, um, no cotton. No cotton on the boat. I come with leggings usually that are dry fit. Everybody's got yoga pants or yoga leggings that they can start out in, and then you layer from there. So I'm going to have waterproof shoes on, or at least shoes that I can get wet. I use a Keen. Keens are very popular here in Portland. It's a hiking shoe that has water cut outs in it. They are used by most paddlers in Portland. And you can wear anything you like. Uh, waterproof shoes have become more, uh, tennis shoes have become more, available So people are using those now, too. And then from there, we're using a layer, a system of coats. So it's one long sleeve shirt. That's dry fit. Then I'm going to put a light jacket on that and then something waterproof over the top. And that's going to take me through most, most weather, most weather conditions in a hat of your choice, right? basically what you need to come on the water. Uh, we use, come with water because we need to be hydrated while we're out. we start on the, uh, practice time for Rose City Rockets. We practice from six o'clock until seven. We get off the water at seven and go home and then we'll see you again on Thursday. And then we do it again on Saturday morning. 9 40 a. m. And then we're out from 10 o'clock to 11 o'clock. The nice thing there is a social aspect on Saturday mornings in particular. There's a little, restaurant called Little River Cafe that's very close to where we are, where we go out to the river center marina and it's part of one of those restaurants that's local they're very good about our paddling gear, you know, dripping all over the place and they have coffee available. Also serve a nice breakfast and it's filled with paddlers on Saturday morning. So we have a lot of people sharing stories talking about the water and getting, you know, we recognize all kinds of other paddlers that are down there. Because we're, I've been part of that community for so long, that I know paddlers on every team, I've paddled with every team, almost, I've raced with them, um, so there's a lot of, a lot of that camaraderie that's there. It's, it's super fun. K: Do you think that most cities have room on a breast cancer paddleboat team at this moment in time? Like, is there room for people to join? L: I think they're always recruiting. There, there's a challenge, uh, with breast cancer teams, in particular. And, and it would be, hopefully it's true for our all cancer team as well. Now, all cancer, I'm saying that's our, Rose City Rockets--there's probably 50% of us that are breast cancer survivors. Yeah. So there's...
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Warrior Portraits After Breast Cancer
02/23/2025
Warrior Portraits After Breast Cancer
My friend Danyel takes photos of breast cancer survivors in her studio on Hillsboro Oregon. In this episode she describes what that's been like, and she also talks about her recent diagnosis with stage four breast cancer. Don't forget to rate and review the show and if you want to enter for a prize for doing so, email a screenshot of your review to me at Subscribe on: - - Or watch on YouTube: Support my work by making a donation here: Join my Newsletter List here: Resources: The facebook group that Danyel and I connect on is called Oregon Flatties The Photo experience that we referred to is , in Hillsboro Oregon. Transcript: Today's guest is my dear friend, Danyel Rogers. Danyel lives just one town away from me, and she is the founder of Warrior Women Portraits, and she's kind of a local celebrity for it. She was diagnosed with invasive ductal cancer in 2022, stage one, and she had four rounds of chemo after that diagnosis. And in July of 2024, just recently, she was re diagnosed again with stage four, and she has triple negative breast cancer, which is going to be the main topic of our discussion for the second half of today's conversation. Welcome, Danyel. D: Thank you so much for having me. K: I wanted to ask you, first off, it was kind of a perfect setup because last week's guest, Brenda, mentioned how much she loved her experience in your studio, in your photography studio. And so first off, I wanted to ask how you were inspired to create your project, Warrior Women Portraits. Absolutely. I knew in the very beginning when I was diagnosed, even while I was going through treatment, I wanted to give back in the breast cancer world and really just kind of lift them up. Um, I knew it needed to be something unique, something that other photographers weren't actually, offering to the women that have been diagnosed with cancer. I just wanted something really powerful, not necessarily pretty, but powerful. Because we're, we're always, you know, when we get this diagnosis, we're drafted to war, you know, we don't have a say in it. It's not like, you know, we're just getting reconstruction just for the fun of it. And so, you know, we just have no choice other than to fight. To just do what we can to stay on this, this earth as long as we can. And I wanted the experience to kind of mimic that. As I was watching, fellow flatties at the, flat retreat that was in, that April. I really noticed the, the impact that a group of women had that just knew and understood. And so that's when I knew it needed to be a group session, um, so that they could lean on each other and just have fun and connect. And the more I thought about this, the more it just kind of, it just excited me because It could be people that are 20 years out that feel so much strength that they've beat this and, you know, they've really connected to other women that just need that extra, you know, pick me up of you are strong, you are, you know, resilient, and I love showcasing that. So I really wanted it to be, regardless of what stage type, you could be stage zero. I, and I don't even care if it's a breast cancer diagnosis, cancer's cancer in my opinion, then I just get to, you know, watch it all happen and unfold. K: Yeah. Yeah, I remember, I was one of your first victims and was so honored, so honored for it. And I was, I'm not a girly girl. I don't wear makeup except for a little lipstick now and then. And so I was just like, when I walked in, I was like, Oh, this is going to involve so much more than I realized. There's, there's makeup, there's weaponry. You have a whole arsenal. You have lots of jewelry. Uh, it was a really cool kind of almost like a playful activity that reminded me of, of being a child again, but in a more strong, strengthening kind of way. So, and, and I love that you're open to people who don't identify with the warrior image because there's a lot of survivors that don't, like me, who are pacifists maybe and don't want to take up the, the sword or…. D: Yes, that's, and that was my big thing too, like, aside from the name being Warrior Women, if Goddess, or whatever, whatever, like, just a beautiful human being, like, it doesn't have to have a label either. Um, and I do, like, you do not have to pick up a weapon of any nature, like, it is there for you. Um, but I want to make sure that. Women understand that you can go as grungy or as minimal like you, or just, you know, do more ethereal kind of looks. And that's all part of the journey in the studio. And we, we, we just have fun and go in and out of what, um, our visions may look like idea boards and inspiration boards for different poses, but also for different facial makeup and hair and all the different things. K: So we don't have to, when we show up in your studio, we don't have to have an idea of what we want. Maybe we have a color idea or a theme idea, but no one has to arrive with lots of ideas that they get They get inspired by looking at your idea boards and vision boards coming off of off of your screen. D: And I'm a little, I mean, it's a little for me too because, know, chemo brain is a thing and trying to be like, Oh yeah, I wanted to do that pose, but I forgot. Um, but it's been honestly really helpful for everybody in the studio from the model to me to the person that is, waiting their turn because the person waiting their turn can take a look at some of these poses and like, “Oh, we're doing this staff.” And so it kind of pulls the other person that isn't being photographed into the into the experience, so to speak. And that allows me to be able to stay behind the camera getting the shot and things like that. So it's really cool because it makes the experience like we're all in it together. So like the next lady, when she's done, you know, we flip it and like, Oh, I wanted to do that, that so and so did and, you know, and then it just becomes really exciting and just kind of fluid, really. K: Oh, yeah. And it's nice. You know, when you're posing for a camera, it's super awkward socially. But if you have your own cheering section and in the margins, you know, like it makes it so much more relaxing and fun. fun and playful. And then you can really get into it and start to kind of ad lib in a way that you wouldn't if you didn't have someone kind of laughing with you and in the bleachers. D: The emotions are going to be there. You're going to be like, you're going to feel silly, right? Like, if I'm having you, like, scream or growl, like, that's not your normal, like, persona, right? Um, but it, I think it works. It's amazing. But then we get the laughter right after. To just be like, Oh my gosh, look at that natural smile you captured. Um, so there's all that, the component of getting the grungy and then usually there's the funny after as well. So, um, you get it all. Heh heh heh. K: You have a lot of furs and I really loved my portrait that came back with the furs. Um, because it made me feel a little more connected to the earth, the basic elements. I feel like with this cancer diagnosis, I became more in touch with my mortality in a way that I was okay with. Like I was admitting that I, I came from the earth and I'm going to return to the earth. And so it's weird. Like I used to wear a lot of. I have purples and turquoises in my wardrobe, and these days, ever since I was diagnosed, I just want the earth tones. And I think it's because I do relate so much to that sense of mortality, that healthy sense of mortality, that everything passes and we have to let go. And the earth is just a reminder of that. So I really love that you had some of those really earthy costumes too. D: And I'm, I'm making even more. You should see our garage right now. I went and got a bunch of realistic looking flowers—a lot to like to put in there, but they're really even feel real. I want to make some crowns, right? Of like the flowers and doing more of like an ethereal... K: Like a fairy theme? D: Yeah, I don’t know, fairy doesn't even seem to be, something that is more, more grounded into wanting more nature versus, um, weapon. K: Mm hmm. Yeah, and the weapons are incredible. Like your, your husband made a bow that looks like a really rustic bow and it actually pulls, and he made it out of…? D: It's just PVC pipe, and he's been enjoying that kind of stuff because like he did the first bow, you know, just trying it out and then he tried a different way and it didn't work as well. So then he went back and did another bow. And the one that you have recently seen in the studio, he put the markings like more of like, um, Viking markings on the bow. And he was so, um, smart and thinking about what symbols actually were to be carved on there. Um, like if, if a woman did actually look up those symbols, it would be like bravery and strength and things like that. So even though it's really the small details of things like that, where we don't want, um, to make a weapon and then have the symbol be something really inappropriate. So we do those things as well. And, uh, made a scale mail, like armor thing that he made with a bunch of ring. I don't know how he did it, but it is beautiful and heavy and gorgeous. K: Ooh, I want to try that one on. I'm going, I'm going into the studio for my second, second portrait session here pretty soon, so I get to try some of these lovely things on. D: The things, I know. And I have to keep adding new things because it keeps me inspired well. Keeps me, keeps me like thinking outside the box. And um So, yeah, I'm super excited. K: Well, I wanted to ask you some of your more precious memories from the studio. If you have any kind of emotional moments or, or your first client that you had, uh, coming into the studio, do you have any special memories that you can share? D: You know, they're all really special. It's really amazing to see how the women act when they first come in to when they leave, and that's just all of the women to be honest, because they're so excited. They've gone through the process. Um, they haven't even seen their images yet, but they're so like in it. But the ones that don't think they're going to get into it, and then they do, those are the ones that are like, Oh my gosh, this is so funny because they're, they're really timid and you know, and it's, it's a strength, right? So if someone is just kind of mousy, you have to kind of pull the mousiness out and, and, you know, give them a little more oomph behind their image. Um. And you can see in the roll of, I say the roll of film, right? The SD card as they go through their session, you can see their expressions become more natural. It's really magical to watch. Um. And then there's the ones that are just like in it, just they're like screaming and they're growling and, and those are fun too. I actually have to have, sometimes, uh, I've let all the people know there's a bunch of businesses up where my studio is. So I've had to warn them, we're going to be doing these, these sessions, and you might hear some screaming or grunting, but I promise you, I promise you, no one is being injured. Then we do a Zoom call and they get to see the images. And watching their face is probably my all time favorite because the excitement, the It's, I think because the women have a persona, they see themselves differently, you know, they don't see themselves as a mom or a friend or a wife, you know, they, you see the strength of just them as a human. I know it's really hard for us women, or just, you know, people in general, to see a picture of themselves and not try and pick it apart. Um, but I think in the, this scenario, they're a persona of themselves. Um, kind of like, you know, Beyonce would be like to a Sasha Fierce when she goes on stage, right? You have this persona. K: Yeah. That reminds me of a story you told me of a mother who talked about, um, her vision for her, her print that she was going to have printed of her photo. D: I think you're referring to when she was like explaining how empowering this image would be on a wall of a family with young children and You know, women aren't meant to be in that big, strong mentality you know, we're softer, we're more gentle, um, but we could do really hard things. And, um, I think it's really empowering for not just the person, but their family, you know, their, their partner to see what they, they see of their partner, right? And they don't necessarily know how to explain that to them, that they see the strength. And now they have an image to be like, see, I've been telling you, you're really strong. But this image really kind of like encompasses it. But then if you have young children, you know, what is that saying to a young little girl, right, she can be strong. She can, she can do really hard things. And my mom did hard things that I can do hard things and, um, giving them permission to feel strong. then you have the other side of little boys, you know, who are able to see their mom in a, in a way that society may not necessarily show him, show them. and so I think it's, it. The imagery that comes out of it is so much bigger than me. So much bigger than the person that is being photographed almost. That, is really the legacy that I'm hoping to leave behind, like, I had a client, um, her husband just printed a whole gallery for her walls and, and gifted it to her for Valentine's Day and, the fact that they like their images that much to put so many on their wall for them to view on a daily basis. So, it's pretty awesome and yes, it is definitely my legacy. In my first phase of life of my legacy was raising my two kids and my stepdaughter, and now it's this, these warrior sessions. Facing mortality is a little bit easier to know that I'm affecting not just these women, but their families, their young kids, their friends, you know, a lot of times their friends will see these images and get really emotional because they too, it's like seeing an image of what they would actually, that they didn't realize was something that they needed to have and that of their best friend, so yeah. K: Yeah. Speaking of family, I have met one of your daughters down in San Francisco. Your daughter Brianna came and helped you transport your entire studio into a hotel room when there were a hundred of us flatties assembling just over a year ago for international flat day. And she was an amazing assistant to you as you kicked out like, like so many little mini a studio sessions, one after another, after another, like how many, like 25 women got their photos taken? D: it ended up being 21 in the end. K: Wow. D: 21 over 2 days. Now normally I do 2 warriors a day. So, and that was, you know, so yeah. I definitely needed her help, her assistance. And she was so, like, it was such a proud mom moment. Um, watching her interact with all these women that I call friends. And, um, Um, and just really seeing her see the power in these women, um, cause I could really see it like she was, she was helping with makeup and, you know, kind of helping things move along so that we could get, you know, cause I wasn't going to have a lot of time to help them with makeup or hair or whatnot. And it was just, it was remarkable to see her interact with people and people coming up to me and telling me how amazing she was. you know, those are, those are words that a mom always wants to K: Yeah. Oh, and she was there every step of the way all through our whole like parade and walking across the Golden Gate Bridge and celebrating afterwards. She was right there with you and supporting you. I just love that you have that memory of that whole two days, three days spent with her so intimately partnering with you on your life's passion. D: And it was, it was really interesting. Um, flat day is actually on my other daughter's birthday. Um, so it was the day that we walked across the Golden Gate Bridge with my daughter Brianna was very emotional because it too was also my, my youngest daughter's birthday, but as we were walking past, and so it was just like all these emotions, but positive and like, God, that was a magical wasn't it? That Golden Gate Bridge, I just had tears running down my eyes and I'm not like a big crier but when, people are driving by honking their horns in support and in solidarity to us as we walk across. It was just, sorry, I know I digress but it was such a magical moment. K: No, it was. There'll be never be anything else like it. I think it was also, I think for both of us, you know, some of our first memories of solidarity and the flat community. D: Yes, amazing. And then knowing that I shared it with my daughter, um, the only thing that could have made it any better was having my other one next to me as well, which she was in memory. K: Well I want to transition now and talk a little bit about your special diagnosis? I've talked about triple negative and interviewed a couple other gals that have had triple negative diagnoses, and it feels so much different, but it's not always different if you capture all of the cancer in surgery in the first place. It doesn't have to be, you know, such a scary diagnosis, but in your case. Um, unlike Marquita, my first guest that talked about triple negative, in your case, all the cancer cells were not captured and you did end up having not just recurrence, but serious stage four cancer cells traveling throughout your body. K: So what do you want people to know about your experience of triple negative? D: I try not to be super scary, but it, it, it is. Lot of, um, hormone positive, cancer cells are grade one, which means they don't replicate super fast. Um, triple negative is almost always grade three, which means it duplicates at a rapid phase. . And that's and that's where the big problem lies, right? On top of not knowing what is feeding it. And so you just kind of like, you're chucking darts at a, at a dartboard hoping something sticks. So I tried really hard to go aggressive in the very beginning, when I was stage one. and because knowing triple negative does have, supercells and, um, so I went aggressive, you know, my doctors had offered a lumpectomy with some radiation and I was like, no, I want a double mastectomy, no reconstruction, let's get chemo and like, I was like, this is just, we're doing all the things you know, we're fighting it and you know, we named my cancer Toby because I didn't want it to be, like me, who I am. Um, so that's kind of a tip that I highly recommend naming your cancer or somehow like making it less you. K: Right. Separating it. D: That way, you have something to fight, right? You're not fighting yourself, you're fighting, you know, the cancer itself. Um, but anyhow, in 20, at the very end of 2023, I was getting really kind of raspy in my voice. And one of the components of going, becoming metastatic is a lot of times it'll go in your, um, Help me out, Kathleen. K: Oh, your thyroid? D: Thyroid, thyroid, thank you. Um, which, if it goes to your thyroid, a lot of change your voice or things like that because it's around your esophagus. So we did a bunch of testing. I mean, we went and we did an ultrasound of my thyroid. I saw two different ENTs, they scoped my nose, and then all the way down to my vocal cords. K: Wow. D: And then at the beginning of 2024, my oncologist was like, let's just do a big scan, what we're working with, and if there's anything, we'll, we'll tackle it. So we did an MRI and CT, um, of pretty much my chest wall, abdomen. And then head to toe bone scan. Everything went fine in February. And there was one spot on my rib that looked, had been there all along, um, looked like a past injury of that nature. Um, it was stable. But my doctor was like...
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My Friend Brenda, a True Survivor
02/16/2025
My Friend Brenda, a True Survivor
This and next week I'll be interviewing some friends close to home. I live in Oregon Wine Country, and there are a few breast cancer survivors who live in my part of the woods that I've gotten close to over the past two years. Brenda is one. We talk just about every week and see each other monthly. She's been through so much, and she keeps going, relying mostly on her own strength. I was thrilled to be able to hand her the mic, as we sat in my living room together to record this episode. Transcript: Today's my first in person interview. I have my friend Brenda Huff with me. She's a neighbor and my sidekick that I invite to all kinds of local events. We hang out together in person a lot and I thought I would have her here to my house for an interview for the podcast. And Brenda is a resident of Forest Grove, the town that's closest to where I live. And she is a former stay at home mom. Raising her kids, and she's also right now in recovery from a number of injuries and from homelessness. So she's had a bit of a rough time recently, but she's doing amazingly in recovering. And so I, I really wanted to invite her to tell her story. She's a fellow flattie. She had stage three breast cancer, went straight to flat from a double mastectomy and, went through treatment with chemo. And did you have radiation? I can't remember. Yeah, you had radiation too. So, we live in the same community, have a lot of the same friends, and we're part of the same flat community called West Valley Flatties. And so Brenda and I see each other a lot. And I wanted to ask her, in particular, about a part of her story that involves the early days of her being flat and being on chemo. And I think this is an important perspective because I tend to have a lot of folks on later in their journeys when they're very used to their new bodies and have, you know, adapted and are celebrating their new bodies. But I think a lot of us, and Brenda included, have had a rough start at the beginning of kind of starting to accept the flatness and the change. And so I wanted to ask you first, Brenda, how did you decide to go flat? B: Um, I wasn't sure about putting implants in there if they would fail me down the road. My surgeon had said something about it and he had asked me several times if I wanted the implants and I said no. I said I think I'll just hold off and I'll just be flat. K: Okay, so it was kind of just your own intuition, your own feeling about what you needed. And did you have any fears about what you would look like when you first saw yourself in the mirror after that surgery? B: Yeah, I did. It was hard. It was really hard. But, um, sometimes I'll wear the prosthetics and then sometimes not, you know, but it's hard to go flat just for myself. And some, some of my friends that are in the flatties just go flat, you know, and they're fine with it. But me, I just still hesitant of it. So I just wear my fake ones. K: Yeah, no, that's that's great. I think for me, I have a fake one too because I have a small Goldilocks and then I have a little fake prosthetic that it kind of sticks on to my skin and I can wear it when I'm feeling uncomfortable and I feel like I wear it in the times when I'm feeling like all eyes are on me. Um, or maybe some eyes that I don't really know or trust maybe on me. But, um, yeah, I think it's, it's great to have that freedom to be like in your body and not putting the extra stuff on sometimes. And then on the days when you need to, then putting the extra stuff, the extra prosthetic on. I think that's awesome. And I, I think we should all feel the freedom to do that. B: But then I have a little joke about that too, about wearing the prosthetics. Um, mine are just made of cotton, but I've gotten out to, outside of the house to get ready to go somewhere. And I'm walking down the street and I look down and one of my prosthetics is much lower than the other one and so it's like what do you do you do you turn around and pray nobody's looking because you're playing with your boobs, you know! K: Oh My goodness, yeah, so I have a story about that: this Christmas I was the one that hosted here at my home and I was running around and getting a little sweaty wearing my prosthetic and it's a stick on and I don't wear a bra with it and I had never worn it when I was getting really sweaty and running around like that and sat down to eat and about like 10 bites into my meal, it fell off into my lap and like, you know, I'm looking around the table to see if anyone's noticed. Hopefully they didn't notice anything, right? I don't think they did, but oh my goodness. That's good. One of the pitfalls of wearing a prosthetic. B: Very much so. We all have it when we are cancer survivors like this. So, yeah. Yeah. I mean, unless you have implants. that are, you know, inside your skin, you don't have to worry so much, but even then I think there's some lopsidedness, some asymmetry that happens for everyone. So for everyone, even people that without cancer have one breast that is smaller than the other. K: I've heard that. Yeah. That the majority of women have a breast. That's a little different or pointed in the wrong direction or whatever. So it's not just us, you know, it's other women out there too. Absolutely. Well, when I first met you, you shared a really poignant. Tear jerking story with me that's always kind of remained with me and um, I'm so honored that you trusted me with that story and you said that you would also trust the audience of the podcast with that, that hard story. And so I wondered if you would share that story here on the podcast. B: Yes, um, that was a difficult time. seen the points in this, the staring and stuff like that, but never what I experienced. I lived in Tualatin and I went into Fred Meyers to do some grocery shopping and I could overhear a lady talking to her husband on the lines of, please do not say anything to that lady. And, um, her husband never acknowledged her and, and she just kept saying, please don't do this. Please don't embarrass me. Please don't embarrass that woman. Please just let her be, you know. And he came up to me and he said, um, and I can't remember word for word what it is, but he was really rude to the point where, um, he says, women have hair. Why don't you have hair? You look like a male. And that really hit. It hit home pretty good. Um, that lady was very upset. She tried to apologize up one side, down the other, and there was no going back from that. Um, she left her husband in that store and walked out without him. K: Good. I'm glad that she did that. B: It's very hard because at that point I had no breasts. I had no hair. Yeah, I look like a man. I mean, it's gotten better, but You know, and a lot of the men were the ones that would point and stare, let alone the little kids. But I taught my kids, you don't point and stare. You know, but a lot of parents don't teach them that. And that's the hard part in here. K: Absolutely. Yeah. Thank you for sharing that. I know at that time you were really raw. You were still going through the treatment. You had no choice but to do your own grocery shopping. And so there wasn't, it wasn't like you could, you know, You know, put a prosthetic on or put a wig on, and that point you were struggling and, and struggling financially too, I imagine. B: Cancer is very expensive. I mean really it is because not a lot of the free wigs are out there and not a lot of the free prosthetic is out there. Um, I was very thankful for you because you were able to give me the swimmer prosthetics and those were fun and I really appreciate that very much because I really struggled with that too to even go to a pool because I have no breasts. So that was the hard part and a lot of bathing suits require breasts in order to look presentable or whatever, but, and I still struggle with it, but I'm thankful that I got help with you and then I found out other communities and stuff out there that will help with breasts, you know, just the prosthetic ones, but yeah. K: So I remember when you and I first met the first day that we met and we'd been in touch a lot through Facebook and email and things like that prior because we were meeting because of the Komen walk in Portland at the zoo and you brought your own team and your team was really good at communicating with me as kind of the head of our larger team and a support group for yourself. And you guys had made beautiful t shirts, um, I can't remember what they said, but something about supporting you, Brenda. And, um, I was just, I loved your energy and you were all dressed up in tutus and you matched and, I'll never forget, you were one of the first women I've ever seen take your shirt off in one of those breast cancer walks for the first time, and you know, experienced that novelty of sharing that intimate part of your body with the other breast cancer survivors around you. Do you remember what that felt like on that day? B: It was an emotional day , you know, I mean all around it was emotional. I got to meet new people and then I just felt like I'm here with them. I might as well experience it with them and that was a tearjerker but it felt good. It felt good to be around those women that look like me, feel like me, you know. It was good. K: Absolutely. I relate to that. I think I remember you saying, what the heck? And just taking your shirt off because you saw so many of us that had done so, that were a part of our team as the Oregon Flatties, I guess is what the name of our team or Stand Tall AFC was the sponsor. So you were joining us because you, you saw the solidarity already and you wanted to be a part of that solidarity. B: Yes, that's what it was. I wanted to be one of you. You know what I mean? So yeah, it felt good. I was hesitant, but it felt really good. I thought what the heck why not? Let's join them, you know, yeah, and you seemed pretty exhilarated afterwards. So it seemed like it was a good experience It was very good day. Very good experience for me Um being with the flatties very good I mean like you and I have a close relationship and there's a few other women that I do talk to Um, but not the closeness that you and I have You know, and I just think if somebody else is going through the same thing as we are that you need to get hooked up with the flatties. K: Yeah, it's been really amazing that first day that I met you.There were a dozen of us that had our shirts off and with power. There was a lot of power that day This last October it was a little quieter There was a kind of a rival event in Bend a lot of the flatties were doing on Floating down the Deschutes River activity and so it was It's just you and I with our shirts off this last October and that felt pretty different. Tell me what you remember about that experience. Just being the two of us. B: That was kind of different because it was kind of more butterflies . You know what I mean? Because it was, like you said, just you and I there. So that was more butterflies like, do we do this or do we hold off or, you know, so it was a little struggle. We did it, right? I mean, you know, we had to support, you know, us. It's colder too, I remember. It was really, yeah. So we didn't keep them off for very long. No, not very long at all, I'm telling you. It was, yeah. K: The year before was quite chilly because we did it earlier in the morning. It was really early! B: Yep. Yeah, you know, but this one, yeah. And there were so many people. That was my part. Yeah. Yeah. I mean, the year before, we had plenty of people, but this year seemed different. Like it was just a lot of people. K: And then another time, a strong memory for me with you was being a part of Danyel's photography studio and going through the Warrior Women portrait experience. That was so fun to be there just helping you, having fun with you, kind of playing in a playful way with photography and makeup and, and uh, Props in the photography studio tell the audience about that experience I haven't talked about that before but I hope to have Danyel on soon, but tell us what that was like for you? B: I enjoyed that. You said something about let's go to Danyel's studio where she helps people kind of bring out their power, their warrior type thing. And that was a blast. Just a blast. You helped me with makeup and wardrobe and stuff like that. And, and I did, I got to pick one final picture and that was amazing. Just amazing. I am going to probably next month blow it up, go get it blown up, but put it on the wall. That's me. You know, that is me. And it was an exciting, I mean, I love Danyel to death, you know, and I love you to death to be able to do that with me, really. K: So where are you going to put it in your home? B: I think I'm going to put it right in the living room when everybody walks in, that's what they're going to see. Because that's me, you know, I mean, big and out there, you know, as much as you can. The cancer. Yeah. The emotional. Part of it comes later, you know in the evening and stuff, but that's the hard part, but I'm doing it. K: I want to hear more about that. But before we move on from the photo, tell us what the photo looks like? B: The photo I am got like a black outfit on and the green and blue makeup that was on was Beautiful. That's what Danyel did and I love that makeup and then I have like um I think it's flames or yeah, I think it's flames coming out of my hands for like fire type thing, you know, I think so. K: Yeah, she added that in as a special effect post production, I think. Yeah, she added it in when I went and looked at the pictures and I told her, I said, I like that pose, but I like the fire with the other one. Can you put it together? And then that's when she said yes. So for those of you watching on YouTube, I'll put a picture of Brenda in that, um, in that pose. Yes. With Danyel in her studio.I thought that was amazing. Yeah, it was a good day. K: It was. Yeah. So you had talked about some of the emotional side of adapting to this change in your body and still recovering from cancer and some of those emotions come more in the evening? B: Yeah, they come more in the evening when it's downtime. It's thinking about what's going on and stuff like that. Um, I'm single, so I live by myself. And so that's a struggle at night. K: Do you have things that you do to get yourself through those hard times? B: Um, yeah, I do a lot of crafts. Um, I enjoy doing stuff with silk flowers and doing different craft ideas. And, you know, generally I just give them away. But, you know, it's fun and it keeps my mind, you know, keeps all that away. So, yeah. K: That's another thing that we're planning on doing actually later this week is doing some crocheting together with Danyel as part of a local breast cancer support group. So, that'll be fun. Learning how to crochet. I have never learned before, so. B: I remember a very good story. Yeah. And it was kind of funny at the end. Um, you and I went to dinner, um, with the other group, um, I can't remember what they're called. But. Oh, with Best Friends. Yeah. We went to that restaurant thing and then we stopped by New Seasons on the way back. Oh, yeah. Do you remember? I remember. And, uh, yeah. We got ice cream. Do you remember that? We ate that pint of ice cream in the car before we went home. K: Because we hadn't had dessert. B: Yes, because we didn't have dessert in the restaurant. K: I remember that. Yeah, and you told me a lot of your life story at that time when we were sitting in the car eating our pint of ice cream. B: I think that's where we really got to know each other was over that pint of ice cream. Yeah, good memories. Yeah. Yeah. K: Well, I want to hear kind of the contrast between the woman who was standing in Fred Meyer that day getting bullied and harassed by that gentleman (or non gentleman!) and the woman who's sitting next to me right now and, and how you think differently about your body, how you defend your body in your own mind, to your own self and your demons. If that comes up, if there's any shame that comes up, how do you deal with it these days? B: Um, cancer is very, very hard. The treatments are very hard on cancer. It's to kill it. I get that. But it changes a person from head to toe, big time. And I've had to grow a backbone really. I've had to grow almost armor because I'll still get the comments, you know, not as severe as they were before. Um, but my attitude's totally changed and it's almost like you put a barrier up. Um, I don't know. I guess that has a lot to do with that, you know, I'm single and whatnot. So, I don't have that other partner to really, you know, cry on or whatever. But, I struggle with the brain part of it, with the chemo. Um, about that I know I want to say something and does it come out right? Not really. Or, um, it gets jumbled up in my head and it just doesn't come out at all. And I really struggle with the memory part of it. But You know, um, I've just gotten a lot stronger, I think, and, and I have friends to lean on. Um, back then I really didn't. You knew who your friends were and who they weren't. Um, and so I've grown closer to a few, you know, and I'm sitting next to a wonderful one right now that all I have to do is call if I have questions. And that's what you've said all along. And that's what everybody needs that is coming into, you know, dealing with the. The treatments and stuff of cancer is they need somebody that, that's already been through something to be able to talk to. K: Well, Brenda, what do you say to, or what would you say to a brand new cancer patient who's just facing mastectomy and treatment today, um, with all the wisdom that you've gained in the last few years since your experience, what would you, what are some of the key pieces of advice you wish you had known back then? B: To put your armor on. Don't listen to what they have to say. Um, when you would see people staring or pointing, just let it go. Just let it out of your mind. Just don't listen. Um, and get yourself a coach or somebody to talk to. Um, I didn't have the coach or the friends or the flatties until after I was pretty much done with my treatments and stuff. I wish I would have had that throughout the whole thing because those women have already been through what I went through. Just hook up with somebody you can talk to besides your family. You know, besides the normal friends that you see on a regular basis, get with somebody that has already been through what you're going through. It will help a lot. K: I so agree with that. It made all the difference for me, too. I think we need, we feel like we need to kind of buckle down and just handle it. It's not so bad. Other people go through this, too. My case isn't the worst case. But, until you get with the others that have been through what you're going through, you You don't really see just how much you really are going through. B: Yes, yes. And how much you have to deal with on a regular basis. You know, it is a lot to take in. Cancer is not a game, you know, cancer knows no age, no sex, no color . It does what it needs to do and it wants to prevent you from breathing, you know, really, and you have to be strong and do what you need to do to survive. K: Yeah. If you see someone in Fred Meyer who looks similarly without breasts and without hair, what is your inclination nowadays? Do you have, I mean, you probably haven't had that experience, but if you do, what do you think that you would say to that woman? B: I'd go up to that woman and say, you look beautiful as ever. You're amazing. You're, you're a survivor. Yeah. Yeah. I'm glad that we can say that to each other. I wish we, I wish I had that back then. I wish I had the coat of armor on. I...
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What's Capsular Contracture?
02/09/2025
What's Capsular Contracture?
Today I'm reflecting on the science related to last week's episode talking to Christina Miner about her Capsular Contracture and Breast Implant Rupture. Lot's of good resources linked below about this.... Links: Another great podcast episode on the history of implant mis-regulation is . The checklist I mentioned is here: A report on Breast Implant Illness is here: The website I mentioned for implant-associated lymphoma is here: And a short interview about Squamous Cell Cancer and implants: A great advocacy group that will help you to advocate for better research: Transcript: Today's another solo episode where I'm reflecting on my last guest conversation with Christina Miner. We talked about capsular contracture in the last episode, and I just want to reflect a little bit more on the meaning of this, the implications of this, the frequency of this, and a little bit about some of the risk factors. I realize that this is a very controversial and touchy issue. And by talking about these things, I want to remind listeners that I'm not taking a side. I don't have an opinion on whether breast implants are good or bad. I feel like it's still very gray, and it's a very personal decision, very much having to do with your tolerance for risk. I feel like I made an intentional choice to invite my first guest on, Michaela Raes, to talk about her positive experience with implants because I do feel like I am skewed in that most of my friends in the breast cancer community are flatties and a lot of those friends have explanted it because they have become sick as a result of their breast implants. But I don't want this podcast to be singularly about the flattie perspective and rah rah flatties. I really want it to be helpful for everyone in the breast cancer community. And I'm doing this episode in particular, not just for the brand new patient that has to decide about whether or not to get implants. I'm doing this episode to talk about ongoing risks for my friends out there who already have implants. You need to be vigilant. You need to watch those implants over the years. And certainly you need to get them replaced when they're wearing down and breaking down in your body. It's still the case that most of the people who get breast implants are not breast cancer survivors. About two thirds to three quarters of the folks who get breast implants are just getting augmentation. They are not cancer survivors. And so these things that I'm talking about today, whether it be capsular contracture or breast implant illness or cancer, So I'm going to read the definition from the National Center for Health Research about what capsular contracture is. Their definition says it's one of the most common complications of breast implants. In fact, it's over 50 percent of the population of those who get breast implants that have some amount of capsular contracture. Capsular contracture is when the scar tissue capsule that forms around the implant hardens. So it's natural for an implant to have scar tissue around it, but it's not natural or intended for that scar tissue to harden. And in some cases, the hardening of that tissue can be quite painful. And it can distort the shape of the breast, and it can make mammography more painful and less accurate. Removing the implant and the capsule without replacing the implant is the only recommended way to guarantee that this problem is corrected. According to the National Center for Health Research. Which is a National non profit think tank and lobbying group that tries to help the FDA be more responsible in its use of or approval of medical devices in general. It's kind of the main aim of that organization. Now with capsular contracture, you don't always have a problem for the patient. If it's just slight hardening, it may not be something the patient ever notices or is bothered by. Uh, but I, when I go to breast cancer walks and I table for Stand Tall, AFC, to talk to folks about flat closure. A lot of times I will have women walk up to me and talk to me about how unhappy she is with her implants. And the most common complaint is that they're rock hard. And why didn't they tell me these things were going to be rock hard? I don't like hugging people anymore. I don't like holding my children because I've got these rocks in between me and my children. What they're describing is, I now know is capsular contracture, but because we don't go back to our plastic surgeons and have ongoing conversations with them about how our breasts are feeling and how we're experiencing our breasts, we don't get told that. And so, you know, you can go on and on and even be in a breast cancer support group and have three or four of the other women in that group say, Oh yeah, mine are really hard too. I guess that's just the way it goes. So when I'm tabling now and I hear that story, I tell women to please go back to their plastic surgeons and ask for them to advocate for the insurance company to pay for removal of their implants and to get a Goldilocks procedure instead. You can still have a small breast with just the skin that's around your implant. with a Goldilocks procedure and most plastic surgeons are very happy to do that. Very, very cognizant of the discomfort of capsular contracture and the fact that it's not an intended outcome. It's not something that they want for you. So with Christina, she had an extreme case of a capsular contracture. Not only did she have lots of hardening, lots of contortion, but that thing was being eaten by her body. It was also an immune reaction. She was having multiple responses to the implant, and she experienced rupture, which is another side effect and possible risk factor in getting implants that we just don't hear about. Even folks that are given implants, they don't get to read about or talk about the likelihood that they would have a rupture or a leak. And so I want to read the description from the National Center for Health Research about rupture and leak. When a saline implant ruptures, it usually deflates quickly. But when a silicone gel implant ruptures, you may not notice any changes. And the rupture may not be detected by a doctor or a mammogram or an MRI or ultrasound. And MRI is recommended for silicone implants every 3 years for everyone following surgery. And every 2 years after that to check for a silent rupture. So it's likely that after 3 or 5 years that your breast implant will rupture. And you may not know it if you have a silicone implant. These MRIs that are recommended for follow up are not usually covered by health insurance, and this is something that people really should have been told really early on. Um, they are highly recommended to, um, just make sure that your implants are still intact and still the same shape that they should be, but they may not be paid for by your health insurance, which is a really big bummer. And silicone might migrate in to the nearby tissues such as the chest wall, lymph nodes, upper abdominal wall, and into organs such as the liver or lungs where it can't be removed. And since migrated silicone can cause health problems, it's currently recommended that any ruptured silicone implant should be removed immediately after the rupture. And treatment of these conditions might be at your own expense, not covered by insurance, or the manufacturer's warranty, unfortunately. And when I talk to friends in the breast cancer community that have had their implants, for more than 10 years already. A lot of times they have a really nonchalant attitude about that. Oh, I'm sure it'll last 20 years. I heard somebody say that their aunt's lasted 20 years. Maybe mine will too. I really discourage them from letting it go that long because the likelihood is that It will break down in your body and you will have some health effects from it. So another risk of breast implantation is something that we talked about in episode 13 with my friend Anna. She had something called breast implant illness. And this is something that's really hard to quantify or even explain in an objective way since the medical community has still not come together around a definition of it. It is. very well acknowledged by most medical professionals now as a true condition. So that's good. That's progress over about 10 to 20 years ago when it was kind of denied in the medical community. And the FDA has started to study it, which is great. They started tracking in 2008. the number of complaints that they had about breast implants and the number of complaints that they had specifically with the types of symptoms that come with breast implant illness and they found about a little over 10, 000 reports between the years of 2008 and presently, 2024, that qualify with the the relevant symptoms, which are fatigue and pain, usually mostly joint pain, skin conditions, migraines. memory loss, and brain fog. Several studies of women with breast implants have shown that they're significantly more likely to be diagnosed with one or more of the following diseases compared to other women. All of these diseases are autoimmune diseases, so they are chronic fatigue syndrome, multiple sclerosis, Sjogren's Syndrome, which my guest in episode 15 had as a result of a drug, um, coincidentally, and systemic sclerosis or scleroderma. There are so many different accounts of how many women get breast implant illness every year and unfortunately there's not a lot of studies on it so there's not a lot of objective data. I can't really tell you how many women are actually struggling with this. Mostly because, like my friend Anna who was in episode 13, they don't know that they're struggling with something related to breast implants so they can't go to the FDA and complain about their implants. So So many women have lingering symptoms for decades without running into anyone that knows that this set of symptoms actually is a result of your breast implant. So we need lots more awareness, lots more education. That's why I'm talking about this issue again on this episode. Just to get it out there so that we can talk about it in our breast cancer support groups and in our breast cancer communities. But the legitimacy of this condition is proven by the fact that removal of the implants resolves the symptoms in so many cases. The FDA said that in seven out of eight cases, there was a relief of symptoms in the folks that did get get their implants removed. So this shows that it is a legitimate medical issue that does need to be formally acknowledged by the medical community and defined well and taught about when we're giving out breast implants, right? There's another really scary side effect of breast implants that I will not focus on in this episode because I do want to have a guest on to talk about it who has more experience than I do. But there is a type of cancer that is believed to be associated with breast implants. And originally it was thought to be associated with the textured types of implants only, but it is still kind of being sorted out whether or not it's just that type of implant. And it is called “breast implant associated anaplastic large cell lymphoma.” And to a smaller degree, there's another type of cancer that is thought to be associated with breast implants called “squamous cell carcinoma.” And I hope to have Raylene Hollrah on as a guest to talk about this. She is the loudest advocate out there. She was, I think, the 30th person in the U. S. to be diagnosed associated anaplastic large cell lymphoma diagnosis after implantation. She has a website called Just Call Me Ray, and it's ray, spelled R A Y, dot org, and that's where she tells her story of having been diagnosed with a second cancer because of her implants. Uh, like I said, I'll hope to have her on to talk about that sometime. And I won't go into all of the details about this cancer risk, but it is, uh, thought to be a risk of 1 in 4, 000 patients, so very, very low risk. But, um, still being ironed out which types of implants are possibly going to cause this type of cancer and at this point, I just want to say again that it is my belief that most of the women who get breast implants are very happy with them. They don't call their breasts rock hard. They are very pleased with the outcome and they don't get any sort of disease or autoimmune disorder as a result of their breast implant. But because these risks and possible side effects do add up to a lot of concern and worry, I think for those of us who are part of our community who have implants or who are going to pursue them, we just want to make sure you have the whole picture. That you know how to watch and monitor and what to look for. When I went to get my tattoo on my chest after mastectomy and a delightful woman who did my tattoo art, uh, told me the story of how she had almost no breasts, kind of like I do now. And, um, she is really, really happy with her new breasts. And she wears clothing that accentuates them and really celebrates them and in her relationship with her husband. And she couldn't be more thrilled with them. So I think for people like her and me who have had both of the experiences of Almost no breasts and large breasts. Um, it's easy to know kind of where you stand and what you feel, as a result of that body type, but you never really know what you're missing if you haven't experienced it. And that's part of the difficulty of making the decision to get breast implants. I think, especially after breast cancer, you don't know what being flat is going to be like ahead of time until you experience it and look in the mirror afterward. So I understand why it's really hard. And it's, it's hard to be rushed into that decision as well. I think for patients like Christina, last week's guest, it's really easy to know what's right. You know, if your breast is, you know, implant is exploding outside of your, your body and it's like, Telling you that it wants out right away. You know, it's, it's easy to get that explant and to go on to be flat, but I think for people like Anna who had to live for a dozen years with these mysterious symptoms that she had no idea were connected to her breast implant, then it's a little bit more of a sad story to look back on and to tell. So if you'd like to read more about all of these phenomena, the rupturing, the possible cancers, the breast implant illness and capsular contracture, the website I would send you to is the one for the National Center for Health Research. Their website is www.centerforresearch.org, and it's right on the front of their page. Um. the information about breast implants and risks. And you can go and look for their black box warning document and their checklist document. And I would recommend printing it out. So you have it handy. I had a good friend just diagnosed with breast cancer a couple of months ago, and I was able to be strong and objective and holding this in my hand while talking to her, knowing that I'm not using my bias as a guide, but Just listing out the facts for her because, unfortunately, I know that her surgeon probably doesn't have time to do that. So, I would highly recommend going and printing out the checklist for friends of yours who are going through the decision making process or friends of yours who are suspecting that they might have a problem with their current implant. Unfortunately, the FDA is pretty slow to correct any of this. industry sloppiness. And we don't know exactly which kind of implants cause which kind of problems. The industry has not been pushed to do enough good research on the effects of their products, unfortunately. And so we also need to really push Our Congress people to push for the FDA to regulate this stuff better so that we can feel more confident recommending that our friends do get implants when they feel the need to without being nervous about them. And so I think that's a really important thing for those of us who are comfortable talking to Congress. People or writing to them or sending them an email. I think that would be a good use of our time around this issue as well. The bottom line is I think some of us just have bodies that respond more strongly to foreign objects. So it's good to know these things and have conversations. Know where to point people for the resources. Be sure to let me know what you think of this. I have a new Substack newsletter that's really interactive and I have a number of threads for discussion on it So I'm excited to see your your ideas and input on this. If you subscribe to my Substack you'll get the email updates for it, and it's just Uh, abreastcancerdiary. substack. com if you want to join. And that would be the place to respond to these kinds of kind of touchy discussions. Next week, I will have a very personal interview with a dear friend of mine here living locally, um, to me. I've decided to do a couple of interviews with friends that I see often in my own breast cancer community who are pretty newly diagnosed and still really struggling with their diagnosis and outcomes. One is still struggling with an early cancer diagnosis, early breast cancer diagnosis, and the other one is dealing with a second cancer diagnosis. I feel like I've kind of erred on the side of telling stories of victory and encouragement and coming out of the struggle with a great perspective. But my next couple of interviews are going to be a little bit more personal and raw and kind of from, uh, the midst of the struggle, I guess, and things not being resolved yet. So I'm happy that I can tell their stories too because these are really important stories and maybe even more meaningful for those who are really struggling and coming out of the midst of change and body resolution. And hopefully you'll relate to them. If not, feel free not to listen to them. If they're a little bit too triggering for you, they won't be for everyone, but I look forward to having these very special guests that are friends of mine from my local community. And I'll talk to you then.
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Unexpected Outcomes and Showing our Scars
02/02/2025
Unexpected Outcomes and Showing our Scars
This episode's guest is Christina Miner, host of Our Scars Speak Podcast. Today Christina shares about her experience with capsular contracture and her openness in sharing her scars publicly. Don't forget to rate and review the show and if you want to enter for a prize for doing so, email a screenshot of your review to me at Subscribe on: - - Or watch on YouTube: Support my work by making a donation here: Join my Newsletter here: Resources from this Episode: Christina's interview with Transcript: Today's guest is Christina Miner from Our Scars Speak. Christina is a fellow flat advocate who's also in my Mastermind with my former guest, April Stears of Wildfire Magazine we're co advocates in the breast ca cancer space in many different areas, both podcasters, so we learn from each other sometimes on a monthly basis with April and some other breast cancer entrepreneurs in our mastermind. And I've been learning more about Christina, listening to her podcast, have so much in common with her, and I'm thrilled to have her today. Welcome Christina. C: Thank you for having me. I'm so excited. And it's so funny when you came to me and asked me, would I be a part of this? I was like, ABSOLUTELY! Cause unbeknownst to you. I had followed you and your story about DC is and things of that nature and how things that you found out and you didn't know. And I was like, wow, and it was just so powerful and enlightening to hear you share your story on. I think it was YouTube that I found you! K: Oh, really? I didn't know that. C: It's been a while ago, but I was like, oh, and I used to always think about you and just like, I hope she's okay. K: Aww. Thank you. Yeah, when you share the raw stuff on YouTube, you kind of leave people hanging, and then YouTube doesn't show them the follow up video that says, I'm doing great. So it's kind of frustrating sometimes, but. Thank you for following me. I had no idea. So you live in Prince George, Virginia, on the other side of the country from me, and you are a counselor and working towards doing a master's in counseling and becoming a clinical therapist. And up until now, you've been also, you've been doing life transition coaching with individuals as well. Is that mostly online? C: Mostly I do have some clients that have been around town that really have gone through, you know, like newly diagnosed with breast cancer. So yeah, or either they're starting a new business and mental health. So I do consultations and coaching and I call it transitional coaching because it's usually at a transition of life. And a lot of people are like, let's just get to the raw meat of what's happening. But I'm like, okay, we're going to get to that and we're going to do that. But how's it affecting all aspects of your life? Not just this one term, like how's it affecting going to potentially affect your health, your family, you know, your social life. So I try to make for sure their wellness is also encapsulated with just with the problem or the newness of a new venture that they're having. So, yes, I do transitional coaching and I do qualified mental health. I'm a qualified mental health professional, which is someone who goes in the home to do case management sometimes with various clients in Virginia. Okay. So you work for the state right now. Or you did. C: Usually it's private organizations. K: Okay, cool. Okay. And what are you hoping to do once you have your master's? Are you going to branch into anything new? C: Yes. Well, not really new—I've done it before. It's just, I wasn't licensed at the time. Before breast cancer, I also was a partner in a mental health agency, a community based program. after breast cancer, I kind of, you know how it can be kind of stressful and you just like, you didn't, I didn't want to manage anyone. I just wanted to relax for a little bit. So that's when I said, you know what, during this time, I'm just going to see which direction I want to go. And I was like, I talked to my partner and I was like, maybe I'll. Go ahead and just get a license in counseling and become a therapist. And so that's how I went in that direction, all for the hopes of one day having a wellness center where I want to be able to just like, not just therapy. Everybody doesn't want therapy all the time. So there's a lot of holistic things that people love to embrace when they're going through life period. Not just necessarily something that has happened to them, but. As you know, because I know you really, you know, you love various holistic things, yoga, you know, um, Pilates, uh, mindfulness meditation. So I want to have a wellness program, but I will probably just start out with the outpatient therapy, um, center first and then start incorporating all the other holistic aspects to it. K: Wow. I have had a similar dream, actually. When I first met my friend and mentor, Marlena Murphy, who passed this last year from stage four breast cancer. She was so inspiring to me because she worked in a place like that, like what you're describing, and I'd never heard of it before. It was a breast cancer patient-centric clinic that served folks not only in mental health, but also in massage therapy, physical therapy, nutrition, which is my thing. And I was like, Oh my gosh, that is such a great business model. So I'll have to talk to you more about that, that center that she worked in and it's in Georgia. So it's not super close to either one of us, but maybe we can meet there someday and do a little tour. C: Because honestly, when I was in one of my classes for career counseling, I came up with another idea to add to it. We had to think of this model of what, what would you do if you, you know, it had to be something different. So I'm not going to do a wellness center. Let me add something else. And something that stuck out to me and reminded me when you were speaking a lot of times when we are getting, you know, acclimated with life after or during our treatment or after our treatments. people change professions, and sometimes people want to change professions or go back to their profession and they just cannot their acclimation to society. Everything is just different because we've gone through this traumatic experience. And so I've seen where there's an absolute need to help people into what they want to do now, because now their perspective may have changed. You may want to do a whole different course far as career. K: Yeah. I relate to that. I can never go back to the me that I was before breast cancer as much as other people do and they have no problem doing that. I just can't somehow. So, well, let's talk a little bit about your experience, with your, your diagnosis and treatment. You had like me, your main diagnosis was DCIS, which is a pre cancer and the ductal areas is kind of what they're thinking. And, um, you had an expander placed because you had decided to get a double mastectomy and implants. Tell me the story of how that expander changed your life. What was that like? C: Wow! So with with the DCIS, you know, of course, I chose a double mastectomy and For various reasons. I just I was trying to avoid all Treatment for as radiation not to say that I never would do anything like that But it was just up for me and what I knew I was facing. I was trying to avoid all that meanwhile I was like well, I don't know, maybe I could get a little bit of my life back so maybe I'll do reconstruction. Flat was given to me as an option. I must say by my doctor as one of the first options, she was like, you can go flat or you could, and then she started riddling off everything else. And I was like, okay. And I had never really heard a flat, you know, like aesthetic flat closure or just that period as being an option. I was just blown away that because a lot of people don't get that from their doctors. So she asked me about, um, you know, I could get expanders and then I could get… What was it? The gummy, I think was the gummy implants afterwards, um, after my skin expanded back out. So I was like, okay. So I asked her about the material of the expanders and she was like, it's the same material as the implant, except for I'm going to inject saline in it for your, um, when you come in here every so often. to expand it to the size that you want. And I was like, okay. So did that. But soon right after surgery, I was just sick, constantly. I had a temperature of 103 for the first three days after surgery. Um, didn't know why, but it went away. But then I had a low grade of 99. 9 all the way up until I got the expanders taken out. Um, I had a rash. Every time I ate, as soon as I put it in my mouth, it came right back out. Um, but I didn't have stomach cramps, but it was just like, as soon as I ate, it just came out and then I had headaches. I started having headaches. I started being fatigued. I started having sweats. my joints were aching and then I would try to walk and it was like, to get up, I was like having difficulty. Um, as if I had like arthritis riddled body completely, it was just a lot of different symptoms that I had at one time. So I was, my first thought after probably about a week of having, um, after the surgery, I'm like, “what is trying to kill me?” Because. It just, it got worse and worse every day. So on top of that, I started noticing that the side where the cancer was, the expander was looking like it was pushing out. It was like growing. And I was like, okay, I haven't had a fill this week. It shouldn't do this. But as you know, during, after my surgery, COVID hit, so I couldn't go to the doctor anymore. I had to stop, but I was fine with it because I was at the point where I didn't want any more fills anyway. And every time that I was going, when I was telling her how bad. I was hurting and how sick I was. And she was asking, questioning me about the temperature. She was like, you know, I said, well, maybe then I, I was just feeling terrible. Like everything you can imagine. She's like, “are you coming down with something?” And she was thinking COVID. I was “no, not that I know of I've been home.” So I had all those issues. Now I couldn't see her and now all of a sudden this left side is starting to contort, starting to turn black. it looked like I had cigarette burns on my skin. It looked like the expander was coming out my chest when I was turning. I could hear the slushing of the saline in my chest. It was an absolute nightmare and then it started happening on the right side. But not as prominent, but it was happening. So I'm telling her all these different things and she's like, okay, maybe you have an infection. She's trying to look at me on camera. She couldn't really see some of the things I was talking about. And sometimes the camera would fail. It was just a mess. So finally when I went in to see her, she was like, cause she couldn't at that point, she really couldn't see everything. Cause it hadn't, it wasn't as bad, but the day of surgery, I was like, well, can we just go ahead and do the surgery? So the day of surgery, looked at me. Well, I'll take that back. We had another appointment in between surgery and the day of surgery. And she said, “Oh my goodness, you must have breast implant illness. I think you may have breast implant illness.” And I said, what is that? And so she was telling me how like the body can reject the material of the implants. Um, I said, of course I Googled and I was like, “oh, you think I'm losing my mind?” Cause a lot of doctors associated with, um, some, a mental disorder, you know, like, oh, that it's just, it's in their mind. And she was like, “no, I believe my patients. She said, you got about every symptom here.” Um. So she said, well, let's see how you do with, you know, the implants. the day of surgery, she said, but I don't know if you're going to do that well, because if you're having this reaction, she said, but maybe I could, she said there was different types and stuff. And I was like, okay, I said, well, I don't know if I want to do that. She said, well, we don't have to. She said, but I'm thinking that might be it. She said, but I don't know for sure. So that's kind of how she worded it. So the day of surgery though, at this point, Everything was twisted. Everything was about to pop out my chest. And she looked at me and she's like, you have capsular contracture. it's the highest one, the highest level, so what do you want me to do? Do you want me to do an implant or do you want me not? I said, look, at this point I'm trusting God in you. And that's all I know to trust because I'm going to be sleep. I said, and I've never gone through this before, so I don't know that you possibly could do while you're in there. I tell it, she said, well, you're kind of leaving this kind of vague. I said, okay, then if you think that I'm damaged severely, do not put nothing in me. Leave me flat and that's it. So I woke up, she tapped me on the shoulder. She said, you're flat. She said, and I will never put an implant in your body. She said, because you were damaged that bad I had lost a layer of skin. So when she went in for the depth perception, the implant was busted and it popped open, going all over her assistant and everything. And she said, I was one of the worst cases she had seen with the hapser contractor and the breast implant illness. So after that, I came home like that same day, I felt so much better. And then when I came to my first appointment, she's like, you look night and day and my temperature dropped. So that’s what the expanders did for me. So I didn't make it to the end point. K: Wow. That is an extreme case. That is definitely the most extreme case of a bad response to, well, it's not even an implant. It's just the pre implant that I've ever heard. Did you have a known autoimmune disorder before that or anything you are aware of? C: Not to my knowledge, I do not. Now, is it to say, that I do and I just don't know because, diseases. It takes them forever to figure it out. Um, but not to my knowledge. I've never been diagnosed with like sick a cell or lupus or anything far as that. So, said, she said, you know, you may have an underlying autoimmune disorder. She said, it may just be that your body just does not like the material. was thinking, I had other things, you know, like I've had knee surgery. I've had, you know, um, root canals, you know, just thinking of things that I may have placed in my body before and I've never had it. That was the worst had ever experienced in my life. It was worse than the actual cancer. K: So you had how long to get ready for the possibility that you might wake up flat? How long did you have to process that? C: Um, that day, like right before I went into surgery, because, because of everything that was going on with COVID, it wasn't like I had this great workup, prior to, because the doctor's office was closed. You're on a camera that, you know, they didn't really use that prior to, so they're trying to figure it out. I'm trying to figure it out from my end. So the video wasn't always quality. Um, and then, yeah, I couldn't go into the doctor's office till like, I think, like I said, I've had, I had those two appointments. The one in between the surgery and the one prior to that, but that, that was it. Basically right before surgery, she came in and taught me for an hour. She just sat there with me. I was her first case after COVID. So, well, you know, once they opened the doors for us to get surgery and I, she was trying to get me in prior because I kept on telling her, like, it's going to fall out. It's going to fall out. She’s like I cannot get you in. And I was like, but why? I was like, this is like an emergency. She said that she had even taken the initiative to call the insurance companies and call, you know, talk to the hospital and they all said it was cosmetic. And I'm like, excuse me, like, I didn't just wake up one day and say, I want to alter my body and I want implants today. It was because of cancer, why I went this route. So how is that deemed? I said, I get why they say cosmetic because it's an implant, but I don't understand why it wasn't—it was nothing that I elected to do because of just wanting to. I because of something that happened to me out of my control. K: I imagine that's probably just that there was no category to put it in. And so it had to fall into that next closest category, which is not okay. Yeah. That's, that's frustrating. C: Because even if it was elective, if somebody's telling you this is falling out my chest. I did have a friend, her implant fell out in her shower during COVID they got her in, but it's like, why does it have to get to that point? Because now it's a risk of infection really bad because I'm at home. So, yeah, but. Yeah, that day of surgery, she sat with me for an hour and, um, I remember it was her first surgery and coming back from COVID and they got their vaccine. No, tested that morning for COVID vaccine had come out, but they had got tested that morning for COVID, which was like the first test, I guess, that they had had. So they were all talking, you know, it was just, a whirlwind of events, but she sat there with me for an hour. And went over to various things and she said, well, if you do go black, then what we'll do, we could later talk about other, you know, um, if you want to do other revisions or anything of that nature, but I just, I was tired at that point after I woke up had to realize I'm black. So, no, I just had maybe we talked about it for about 15 minutes and it really wasn't talking because. I had her kind of going in there blindly. Like “you figure it out because I don't know what you're about to go into and you're the professional.” She was like, that's not fair. I said, no, but I don't know. I don't know. And this was so unexpected. And with COVID I couldn't come in and down and have, I said, you've already had a conversation with me about different routes I could go. I said, and this just, please use your best judgment. K: So, did you have a choice as to whether or not to leave some extra skin or to have a tight closure or did you talk about that? C: So because I put her in that kind of gray area what she did was primarily flat and she left a little bit of dog ears on the sid—not much, but she left some. She was like you can go back and we can do a revision. She said but I'm not putting an implant in you ever again in life She's like nothing even remotely close to an implant. Um, and she talked about you know, like fat grafting and different things like that. She did not do DIEP flap because she's like the surgery is like too long, she just doesn't do it, but she'll give me a referral. So she went over those options with me and she, she said her reasoning for leaving was because in case I woke up and she said, you know what, maybe I do want to try this, that, or the third. She said, if you want to try an implant, feel free, you just gonna have to go to somebody else. But she did leave a little bit of skin back for that reason, but that was only because I left her in a very gray area with my decision and I understood why she said, now I can go and take that off. Said it would be another surgery. I hate to put you through it. She said, but because you left me kind of in this gray area, that’s what I did. K: And you didn't go back. How did you feel about being flat? Like, were you ready for that or was it really shocking and traumatic? C: I would say that—I don't know what, what has always spun out to me with this whole thing was just hearing the day that I got the diagnosis and hearing the word carcinoma. Um, ductal didn't matter in situ. I didn't care about any of that. It was just carcinoma. So, I used to work in the medical field and I used to work with this...
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A Corporate Professional going through Breast Cancer
01/26/2025
A Corporate Professional going through Breast Cancer
My new friend and fellow podcaster, Tina Conrad, is this week's guest and I couldn't wait to hear how she did it. She maintained a high pressure job as a manager in a fast paced fashion corporation right through breast cancer treatment and recovery. She is truly a warrior woman and I'm so thrilled to tell her story here. Transcript: Kathleen: My guest today is Tina Conrad. She's a senior planner at Carhartt, as well as the host of DJ Breast Cancer, another podcast. And she lives in Leesburg, Florida. Her breast cancer was stage 3A. It was ER-PR positive and HER-2 negative. She had both ductal and lobular breast cancer. And like me, she has a mom who has been a breast cancer survivor as well and has gone through that as a long-term survivor, both of them have had at least 11 years—in Tina's case and her mom even more years since any kind of recurrence. And I just wanted to talk to Tina today about what it's been like because I was telling her, I don't know anyone in my life in the breast cancer community here on the West Coast who's been strongly entrenched in the corporate business world and who stayed there throughout their breast cancer story. And she is someone who managed to do that. So I'm kind of in awe of her. I found Tina through the Wildfire Breast Cancer Writing Community and she's a fellow writer there. And I've heard her story mostly through her podcast and she was sweet to offer me a little bit of advice and a mentoring session when I was thinking about doing my podcast. So we know each other a little bit! Welcome Tina. And please tell us about your journey and how breast cancer entered your life in that corporate business world. What was your role at that time and how did it affect you? How did you exit and reenter? What was that all like for you? Tina Conrad Yes. Well, first, let me say hello, Kathleen. It's so good, so good to be here. I've taken a little pause or or a long pause. It's been a few years since I've done any recording, but it's just so great to be back and be a guest and no one else I'd rather be a guest with. So thank you. So, back to, gosh, back to 2013 when I was diagnosed, um I was a DMM, which is Divisional Merchandise Manager at a large retail outlet. um It was truly like my dream job, like we're where I aspired to be, you know, and I had a whole team of people and I was just recently married, um and like life felt really, really awesome, you know like where I just planned to be. and then you know I just stopped one day and kind of took um notice of my health because someone actually on my team had had a health scare, not not breast cancer related, but just had a health scare. And I was like, you know, like this breast of mine, like the nipples sunken in, something doesn't look right. And, you know, I kind of ignored it like for a few months. I was very much an advocate for breast health. I had gotten a mammogram when I was 30, when I was 33 because of my mom, I was very you know into all of that, but she had always had like a lump. And so this was like totally you know something different. And so having this health scare with someone on my team, I was like, you know, I'm just going to go get this checked out. And, um you know, it was a mammogram and then, you know, they call you back and, you know, you can just kind of sense and read the room that like things aren't really normal. They they weren't like the other times I'd had a mammogram. And so, um you know, that led to um like an ultrasound and then a biopsy. And I woke up from the biopsy and basically the doctor said, get your mom's records. That was the first thing I remember her saying to me. And so it was just very foreboding. So like I knew um things things weren't going well. So ultimately, yes, I received the diagnosis that you know I had breast cancer and it was pretty advanced on stage 3A lymph node activity. um fifteen I had 15 lymph nodes taken out. um So you know I did opt to get the double mastectomy just with my mom's history. um And then ultimately I did find out too, you know I had lobular which can often jump you know to the other breast too. So I felt very good in my decision you know that I had made um given my you know my family history and everything that had happened. um you know But I was i was busy. like I worked a lot of hours. you know I tried to plan my chemo around like the least intrusive time for work. I was still just very, very career focused. And everything changed. you know like Everything changed. um you know i I had never even taken you know more than maybe one week's time off you know in a row you know in my whole career. So you know with this cancer diagnosis, you know um with with surgery, I took several weeks off. Then with chemo, you know you you get yourself worse and worse. you know like The more you go on, it it's just harder. It's harder on your body to recover. And there was one night, like I woke up and it came following, ah you know, my my oncologist was really great, really talked to me just like a human being. And he said, you know, who's your advocate at work? And I was like, well, you know, my my boss, you know, she she looks out for me. She does. He's like, no, no, no, no. I'm not talking about your boss. I'm not talking about that. He's like, who is your advocate? And I was like, well, I don't have one. He's like, well, then I seriously need you to consider taking a leave of absence. And I think he was just so black and white in that moment that I needed. And um you know so that was kind of my first taking a step back from work you know and in focusing on myself and you know putting my health first because I had always put my career first. So like that just was who I was. I've definitely changed just in my attitude and viewpoint to work. I still have remained within the corporate world, but I'm no longer like leading big teams, um and I'm happy. And I just have a different viewpoint, I think, on life and you know what is my priorities. And that's okay and it's not to say if ah someone listening there you know keeps going down a path of career, that's great too. But I feel that you know um you do have to put your health for it first. And you're doing it not only for you, but the people that you love. And that just became a different priority through this whole process. So I was working with Sears Holdings, which was like Kmart Sears, obviously they're no longer no longer in business at the time of my diagnosis. And it was about two years that I had worked there that I just really had a calling that like my my work had to mean more to me. And Vera Bradley had a foundation on that specialized and in breast cancer. And so that was really important to me. in And you know we had so many great opportunities. I saw the foundation like where they do the research. It was so fascinating, you know just all the trials that they were doing. um so So I was really embedded you know not only within Vera Bradley, but you know i I did a lot of volunteer work with the foundation. So I worked there for nearly nine years. And then I just you know recently felt a need and a calling to do, you know again, something different. And so I've been in either merchandising or inventory about half of my career each. And um you know now I have a ah position that allows me to be remote. I've recently moved. um And I get a little bit more in the details of like the work and inventory. I don't want to sound too much like a nerd, but like I love Excel. I love it. So it's just it kind of gives me a little bit more different purpose. and I'm just really enjoying it. So it's it's just been good for me in terms of like a work-life balance and where I see you know myself and you know just trying to help out too. I have an aging mother-in-law and trying to help you know her more too. So hopefully this puts me in a position where like i can I can do more you know and be more with my family. Kathleen Moss At the time of your double mastectomy, how was it going back into the workplace with a new body or a changed body? How was your experience of that change in that corporate setting? Tina Conrad Yeah, I think it was less about, you know, like the breast side of it, it was more the hair, you know, like the hair is a big deal. So coming back, I took my leave, you know, after I'd had my mastectomy, I had been through um like 12 rounds of chemo and so my hair was just starting to come back and it was just like that peach fuzz you know real tiny you know hair and I remember going to a store to to work on some kind of project that we were doing and a customer came up to me and she was like I really love your hair and it was just like such a sweet moment that like you never know what a compliment can mean to you. But that in that moment, I know what a compliment meant to me. you know and And I could have gone into, like oh, I just had cancer, all this, all that. you know Oh, really, it looks crazy. you know But I was just like, I stopped. And I looked to her. And I was like, thank you so much. you know like And it just was really, I didn't have to be a cancer patient in that moment. you know I was just me with short, short you know growing here and it was you know just a beautiful thing. um but But it was, in general, it was a hard transition. you know like It's kind of like ah you know like your badge of honor. like you're You're so vulnerable coming back. um I've written about it within Wildfire too, because I definitely had um a boss when I came back to work at Sears. We had just come from some meeting and I'd only been back a few weeks and you know it was just her and I walking and she was like, um you know now that you're back on the saddle, I really need you to step it up. And it was some of the hardest, harshest words I've ever heard you know in my entire life, because I thought I was so prepared. you know And I really come back and done everything I could do you know to to retrain my brain, to like study these notes, you know, to be a student again and like, you know, cause you're, you're out for, I was out for three months, you know, with a leave. So it, you know, it's, it's difficult to get quote unquote back in the saddle again. It's, it's no easy feat. Um, so you know I just realized in that moment, I can't work for someone that can't acknowledge, you know, she had been kind to me like on other occasions, but like now that I'm coming back, you can't be kind. So it just put things in much more black and white than like I had kind of experienced before in my life. so So I went to go work for someone who had had had like a history of cancer in their own family and could acknowledge you know me as a worker, but also me as a human being. And like, that was very important to me. um And I think it's, you know, no matter what people are going through um in their lives, you know, it it doesn't just have to be cancer. It can be any kind of health or mental or any kind of, you know, issue. I think it's just important to you know to to be empathetic and to understand. you know You might not know all of the details, but I think we have to be kind and like allow people the space you know that they need to heal and to be understanding when people need time away from work. um you know that's just That definitely changed within me, you know within that experience, to then share it with other people and to always you know, give people more the benefit of the doubt, you know, because work will always be there, you know, but um the the relationships and the kindness and the way you make people feel, um it's just very important. um and and And something that will always, you know, go beyond you, you know, even your time on this earth is like how how you make people feel. Kathleen Moss You mentioned needing an advocate ah when you were first diagnosed and it sounds like you did find that in your second job after diagnosis. What did that look like? where Where did that advocacy come from and how was that powerful in your life? Tina Conrad Yeah, I love I love sharing and like helping other women you know through through difficult situations. um I saw that within my mom. She's not so much on the global scale, but you know she would take a woman aside and say, like oh, you're not sure what a double mastectomy looks like. I'll show you. you know And she'd take them to the bathroom and show. you know And she was just very kind you know to people who needed maybe you know just a kind word or or a moment. And so I think giving back was always very important to me. um And I feel like, you know, there's so many things we can do boots on the ground to help women, but also research is so important. So first and foremost, I always wanna know, you know like we're just coming off of October when we're recording this, but where's the money going to that helps women? Not just only for the short term. um Women do need help, like obviously to within a diagnosis, but what can we do to help the next generation not experience what we did, whether it be through vaccines, whether it be through new trials, metastatic breast cancer, there's clearly so many things that we need to help others with. And so that's very important to me. And so it's, it was not enough for me to just, you know, walk away from the community, I felt like I needed a way to give back. And so, um you know, whether it was speaking at various events, whether it was starting up a podcast, um it was just, you know, very important for me to, to help other women and then to, you know, to support them through whatever they're going through. Kathleen Moss Well, thank you for doing that. It definitely impacted me in a good way. Tina Conrad Oh, good. Thank you. Kathleen Moss How was your mom's openness about her mastectomy and the way her body looked after mastectomy? How did that inform your experience going into mastectomy? Tina Conrad I think it was very important. You know, she was very transparent with me. You know, clearly she believed because she she she was told by a doctor, you know, oh, just get the lumpectomy. You're young, you know, this will all be fine. um And then they came back, you know, almost in the same location three years later. So For us, it was very important you know that she shared that experience. She wanted the best for me. She wanted to do the most. you know That would give me the most longevity of life. and so you know she was very much an advocate for me to do as much as possible, obviously, too to be um as vigilant you know to to that. And the way that I think my dad loved her through it is I also feel like the way my husband loved me through it, you know which is to make a woman just feel beautiful in the body that they're in. And so i I feel very blessed you know to have a husband that loves me and told me every day of like every day of my cancer, whether I had no hair, whether you know um I was in the bathroom, whether I had you know this crazy bra on, you know like I just felt loved through it. And I feel like it's it's very important um you know to surround yourself with that kind of love you know of Whatever kind of support that looks like for you, but find people who will love you through it um Because you are beautiful each and every day of of your journey And so I think it's just important that you've you know, feel that and find people that tell you that as well She did yes, yes she did um, and I mean she looks great like she's she's doing great Kathleen Moss Did your mom have reconstruction of any sort? Tina Conrad Yeah, I just went to a softball game of hers today. She's 69 years old and she's out there you know playing women's softball, which is pretty amazing. you know So um you know just to see her and like you know living her best life you know and um it's great. So I think that she's you know so she's such an inspiration to me each and every day of wanting, continuing to take care, be active, um but also you know like help other women and you know um love them through it. Kathleen Moss So was her her experience having reconstruction probably informed your level of confidence going forward into reconstruction too? Tina Conrad Yes, yes, definitely. You know, things have even changed from the time that she had been diagnosed and then I was about 10 years later till when I was diagnosed. And then, you know, I talked to people now going through various things and things continue to advance, you know, each and every time. so you know, I think that is part of where the science is moving forward, you know, and and we need to keep doing what we can to keep that moving forward. But um, I'm, you know, it definitely gave me confidence that like, you know, hey, I can still feel like a woman, I can still walk into a room, I can still do all of this, you know, and, and feel my, myself, you know, and so, you know, that was a great example for me through all of it. Kathleen Moss Yeah, it seems like i I feel like if I put myself in your shoes or my niece who also works in a kind of corporate America retail job, I definitely would value my breasts more. I think I would have given deep flap or implants a little bit more thought probably. So did you get implants? Tina Conrad I did. Yes. Yes. Kathleen Moss And you're 11 years out. Tina Conrad Yeah. Kathleen Moss So have you thought about getting your implants replaced or have you gotten them replaced? Tina Conrad I have not. It is on my radar to talk about actually I have like all new doctors because I'm in Florida. So I think that will but probably be like a consideration. My mom still has like her original ones too. So, but yeah, just like, um, I want to be transparent, like have those, I want to ask more questions. You know, like, I think, um, that's what's maybe great about our generation and below is like, we ask the questions, you know, we, we probe a little bit more. Um, maybe we're a little skeptical, but that's fine. You know, like that just means you're taking your own health into your hands. And I think that that's important. So yeah, I want to do what's like best for me. I i don't know. I don't, I don't feel like I have to have implants like all of my life. I would be fine like with another route too. Um, so I just want to do what obviously gives me the healthiest outlook, um, on life in general. Kathleen Moss Mm hmm. Yeah, that makes sense. Yeah, I've met a few people locally who are in that spot where they're like 10 years out and they have been told in the past that their implants, you know, would last 10 years and they're just in that quandary of like, I don't know, should I get them replaced? And do I want to go through all that again? And it's an interesting little crossroads to reach, you know, especially as you're aging, this person in particular that I'm thinking of is quite a bit older than me. And she's like, I don't have use for them anymore. So maybe it's not worth the trouble. So interesting to think about all of those choices that we continue to have in this and this story. Tina Conrad Yeah, yeah It never, never, it kind of goes away, but it never goes away. you know oh So yeah, yeah. You never know. Kathleen Moss Yeah. I wanted to ask you about your spiritual life. Your podcast site has a really clear kind of progression into more and more talk of spirituality and especially within the Christian tradition. And I know that your spirituality, your beliefs and your faith have really informed the way that you look at your breast cancer experience. And so I wanted to ask you about um a scripture passage that you feel is central to your story and has given meaning to your breast cancer experience. Tina Conrad Well, actually, like just to set it up a little bit, I had had like a kind of a pain in like my arm, and so I had gone in to get some scans done. And then I was awaiting...
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A Diary Entry about Recurrence Scares
01/19/2025
A Diary Entry about Recurrence Scares
This episode is an update from my personal story. I had a recurrence scare in November/Dec/January of 2024 and 2025, and this is the way it's sorting itself out. Always something to learn! --Kathleen Transcript: Welcome back to season two. Today's episode is episode three of this new season. And as promised last week, I will just be talking about my own story this week. I had a recent recurrence scare and I think it's resolving nicely. It's kind of an interesting non ending that I'm at right now. I really thought that it would be all understood by now, but it's still a little bit of a mystery. But, um, at least my pathology came back okay, so that's good. And I, uh, Wanted to share this, not because I think it's so interesting or profound, but because I think it's good. You hear a lot of stories of recurrence that don't end well or that end with cancer, and you don't hear a lot of stories of recurrence scares that do end well. And I think a lot of us keep our recurrence possibilities really silent because we don't want to worry people, and that's a really good intention and probably a good plan, but When we do keep them completely to ourselves, it can really eat away at us. And so I want to encourage people to tell their stories and be open and willing to upset people or worry people. It's been really hard for me to do so. So I'm not saying it's easy, but I just want to set that example for anyone else out there that struggles with this. I know a lot of us have quite a few recurrent scares in our journey. So it's unfortunately something that happens pretty often for a lot of us. So I'll tell my story briefly. Started in early November. I had a little lump about half the size of a dime and maybe two times as tall as a dime on my chest right in the center and thankfully it was in a really easily identifiable spot because I had still have a floral tattoo on my chest, and it was right in the center of one of the roses on my chest. And so I went to see my oncologist. I actually happened to already have an appointment with her set up, so I didn't have to scramble to set one up. And it actually was still there when I got there, and she felt it too. And as the days passed, uh, through mid November, it got a little more tender, a little bit more painful to the touch. And then suddenly, one day, it was gone. And she did order an ultrasound, but that ultrasound took many weeks to set up. I won't go into all the reasons why, but, uh, it was quite delayed. And before I even got to that ultrasound that she ordered, STAT, in early November, I was ordered an MRI from months prior, just on a regular schedule, to do an every other year MRI for surveillance. because I still have a little bit of breast tissue, um, possible in my Goldilocks mastectomy side. And so I'm eligible for an every other year MRI, which is nice because I really like the idea of doing surveillance as much as I can. So that came up actually before the ultrasound. I did finally get the ultrasound set up for mid December. Um, but, um, The MRI came up beforehand and it was in the first week of December and by that time, the lump had completely disappeared. I had no thought of it. I actually never really got worried about it because I've had so many little false alarms on my chest. I've had little bumps and lumps and, um, cysts and, like, Just tiny little skin things that are irritating. I've just gotten used to having those. I've never had them ever before breast cancer, but I think it's pretty common to have them after. And so I've had so many false alarms that I've just been kind of numbed to them. And so I wasn't worried about it, didn't think a thing of it. I thought I had completely resolved until I got the call from the MRI. um, assistant, the radiologist assistant saying that there was something on my MRI and they wanted me to come in for an ultrasound. So I said, well, I already have an ultrasound set up. So that's perfect. I don't even have to wait this time. So um, I did have that, assistant person who called me, read me the orders from the radiologist because I knew it would be really hard to get access to that. And I knew I'd be worried about that. And so that's something I'm really glad that I did. Unfortunately, she didn't read me the whole thing. She summarized it in her own words and got it way wrong. And so, which is a good thing. In the end, it was a blessing because I was a lot less worried. Um, there were actually two areas of concern on that MRI. One was in my chest wall and one was in a lymph node. So as soon as I heard from her about this, I went and felt for my lymph node, and I felt it right away. It was like the same tender kind of lump that I had felt in my chest, the same feeling had kind of migrated into my underarm. And from then on I felt it just about every day just to kind of keep track of it. And Pretty soon after that, I did have the ultrasound just a few days later, and so that was good. The radiologist that I go to for my ultrasounds now, is not a part of my hospital system. She has her own private clinic, so she runs her own radiology clinic and imaging center. And so, um, she always does this, which is amazing, but she offered to just go ahead and biopsy. it with a needle right on the spot, um, because she did see concern. She did, uh, rate it as a BI RADS 4, which is suspicious. She called it a lymph node. She said she would do a little needle biopsy, and I said, No, I really want to wait, talk to my oncologist. I don't want to jump into anything. I think I might want to have the whole lymph node out. Mostly because I, I've had a history of lobular breast cancer and I know that needles can miss that in biopsies. Um, and then later on I was thinking about it and I thought, oh, I know another reason why I said no. It's because I have a reaction to titanium and I knew she'd leave a titanium clip in, as a marker, and that would have been a really stressful decision for me on the spot. So it's really good that I had time to think about it. I had time to email back and forth with my oncologist who was on leave at that time. She was on vacation, but she was great at responding to my emails and I decided to have Or to try to have a surgical biopsy, which means you take the whole lymph node out as a whole with an incision, um, small surgery. And I couldn't find, at first I couldn't find a surgeon that would do that. I talked to one surgeon and her staff and she said no. And then the second surgeon I talked to was my actual first breast cancer surgeon. She had done my first mastectomy and she said yes. So we scheduled it, it was just a week later, it was a week ago. And a week and two days, a week and three or four days ago from now. And I had to go under anesthesia and it was just really clear. She said she remembered where it was. She didn't even like feel for it to see where it was. She just drew a little line on the edge of my, where my chest meets my underarm. And she did the incision. And at the end of my surgery she told my husband, I think I got it. I didn't see it, but all I saw was scar tissue, so I wouldn't have seen it. Um, but I believe it was inside. What I did get had to wait a week for pathology and just a couple days ago Pathology came back. I Went in to see her. I had scheduled an appointment to go over pathology and just before I went in to see her I did peek at my chart, which I am NOT Now, I am regretting that. I'm not thinking that was a good decision and I think in the future I will try really hard not to look at my chart to find my pathology report before sitting in a room with a professional because what it said was no lymphoid tissue detected. So basically it said nope. We didn't get the lymph node and I was flipping out. I was like, Oh no, I just went through all this surgery. I didn't anesthesia, all this recovery, you know, everything all for the sake of not getting a single thing. We missed it. It's still in there. I showed up to her office just a couple hours later and with that attitude of like, Oh, Dang, let's get an ultrasound and make sure it's still in there. And she said, Oh, we can't have an ultrasound. Um, you're all inflamed from the surgery. You'll be inflamed for at least a couple months. We'll do it in about three months. And I was like, I can't wait three months to find out if this thing is still in me. Can you do it a little sooner than that? She said, yeah, she could do it in two months, but no sooner than two months. So I was like, Oh man. And she said, I really don't think that it's still in there. I think it never was. There never was a lymph node in there. And at first I was like, I mean, It was in there and then it just went away right before surgery because I felt it in there. And she was like, no, I think it was maybe something else that looked a lot like a lymph node. And, um, just was really, really convincingly looking like a lymph node on both the MRI and ultrasound. And I said, well, all they found was fat and scar tissue on the pathology report. So how could those things be? And then I showed her my latest ultrasound. which had just happened less than a week prior to surgery. It was just three days prior and it said that I had blood flow detected to the lymph node that they were supposed to take out. And I was like, there's no blood flow. That goes to fat or scar tissue. Like that doesn't make sense, right? Like, and she couldn't really answer that, but I came out of her office feeling really, really confused. Like my head was just spinning and I knew I should be grateful that pathology said it was benign tissue. There was no cancer. That's the result that I was desperately wanting. But I, the fact that I couldn't understand the story and the narrative, I couldn't put it together. It was another puzzle that I couldn't solve, was really frustrating to me and I'm sure it would've been to anyone. And so that's kind of where I'm at now. Um, it wasn't as black and white as I thought it would be. For the first 24 hours after my meeting with her, I was thinking, I'm pretty sure there's still a lymph node in me and we're gonna find it in two months. Um. Then, you know, I went to bed and woke up the next morning and thought, you know, maybe she's right. Maybe there's some other explanation. I need to keep learning. I need to keep asking people who would know. So my oncologist might know. I'll talk to her about it. I have an appointment with her next week. Talk to other breast cancer survivors. Maybe they've had this weird situation where they had something that looked like a lymph node inside of them. And uh, One of the things I really started to do was kind of blame myself for not getting that titanium marker, which is kind of the protocol for these situations. You want to mark the lymph node before you take it out. And yet this surgeon had said she didn't need a marker. I was willing to get one when I went in with her, as long as she was willing to also take out the whole lymph node along with the marker. She said she wouldn't even need a marker. That was really reassuring to me at the time, but then I thought, oh man, how stupid was I if I'd only had a titanium marker put in? I would know if there was still a lymph node in me or not. It would be really clear that either what they took out with the marker was not a lymph node and we thought it was, or they didn't get the marker, so they didn't get the lymph node. Very black and white. This is kind of kicking myself and really appreciating the wisdom of protocol, but Over the days, the last few days, I've had more insight and I think now I'm realizing that I can create the narrative for myself. I don't know what's true, I may never know what's true, that may really drive me crazy but I can create a narrative of what is the most plausible, the most likely situation in light of the fact that I have a strong body that has incredibly strong markers right now. I'm not. having like high cancer markers or anything like that. All my inflammation markers have been low prior to surgery. So I have every reason to think that my immune system is strong, my body is strong, and my body is able to fight off anything that would be concerning. So worst case scenario is there was a lymph node that was concerning and it was starting to build a blood supply and that would have been really worth worrying about. Maybe when it started to build the blood supply and my body started to detect what was going on, my immune system came in and zapped it and it was all just necrotic tissue and it just showed up on the pathology report as necrosis and fatty necrosis because it was just that. that my body had killed the lymph node, and it was no longer recognizable as a lymph node. I don't know if that's even possible, but I definitely will run it by my oncologist. But that's the narrative that I'm going to tell myself, because I can. And because I have nothing else that is Conclusively true, that I can tell myself. Uh, which is so often the case in these situations. You don't get the black and the white, you get the gray. You get more complexity instead of more simplicity. And that can be frustrating. So that's kind of where I'm at now. I'm still kind of wondering if there's a lymph node in there. I can feel without pain and kind of feel around and I don't feel a lump anymore. So that's part of the reason why I'm thinking maybe it's not. It is really confusing to think about that. Last ultrasound report saying that there was some blood flow and I would like to talk to my radiologist and I'll get to when I get that next ultrasound. So I will get to pick her brain about that as well, which will be really good. So I'm very fortunate I have access to all the people that have all the information. Just need a little, wait a little while and get that information. Um, and just be patient. And then I'll maybe have an even more convincing narrative to tell myself. But I just realized, like, this time around, you know, in my mastectomy experience, I had this little journal. It was like a little travel journal that fits in your purse. And I used that to note all the facts and diagnoses and terms and research that was important to me and my journey and decision making. But I didn't write a narrative in it. I didn't, Tell my story and this time I have a bigger travel journal and I'm calling it my surveillance journal for the rest of my life after the initial occurrence and I'm gonna write in there all the facts and dates and figures and you know diagnoses and terms But I'm also gonna write the story. I'm gonna write it in my own words I'm gonna write what I believed and what I told myself Um, because I think that is even more important than keeping track of what happened in a clinical sense and a literal biological sense is what did we tell ourselves about what happened? How did it feel? What did I notice? What were the things that were standing out to me? Because my intuition is the most important intuition in the room and my story matters. Even if it doesn't make the doctors do things differently. In this case, it actually did. My story and my desire to have a whole lymph node dissection through surgery was actually granted. And that's another part of the story that I'm really glad for because I was heard and people took me seriously and, um, they did things a little out of the ordinary because of my story, because my story mattered to me. So that's something I brought out of this kind of flustering, confusing, um, recurrence scare besides the fact that I'm just grateful that I am a well individual now. I am not sick as I feared that I would be. And then I've also been kind of struggling with The idea of when these things happen, it's so freaking awkward to like think about who I want to include on my updates every week when I get new information. And I hate putting that email list together. And so this time instead of just assuming that my closest friends and family wanted to be on an update list and putting an email together and forcing it on them like I did in my mastectomy, which I think is pretty fair, This is not a mastectomy, it's a little less intense. So what I did is I waited for people to hear my story in person from me. And then if they said, keep me updated, I'd say, would you mind if I put you on an email list because I will forget to individually check in with you. There's too many people that want to be updated and I know I'll forget someone. So if you don't mind, I'll just stick you on that email list and I'm going to write an email update. And they'd always be fine with that. So, over the weeks between November and January, while all this was happening, I added people to that email list. And yet, I still felt a little bit, like, overly verbose, overly worrying them, maybe not having permission to give them all the nitty gritty details. And so, I've decided that in the future, another approach that I'm going to take is, I'm going to do, like, it's called a Caring Bridge blog it's like a, an online, a free online resource for people who are sick, who just write what's going on with them. And the people who really care, who really do want to know, will either subscribe to that and get a notification each time a new thing is written, or they can just check in when they get worried about that person. And maybe they won't get worried about that person until they die. But. My insight recently was my friend died. She was down in San Francisco. I was going down to San Francisco. I told her I'm coming. I'm gonna come see you. It doesn't matter if you're sick. She had metastatic cancer. It wasn't breast cancer. Um, and, and then my email or my text messages started to not getting replies. So like right when I left to go down there, I didn't hear back from her. And then I didn't hear back from her and I thought, oh my god, she's, she died. I know she died, I just feel it. And I chose not to check in with any of my friends who were on Facebook, cause I don't have Facebook on my phone, but, I figured it would be on Facebook but I decided to go ahead and enjoy my trip in San Francisco and wait till I got home and then I would ask a friend who was on Facebook, um, and I think I was in the airport when I asked my friend, have you heard anything about Susanna? And she said, oh yeah, I'm just checking now and it does say that she passed away a couple weeks ago. Anyway, Susanna had a CaringBridge blog and I had been checking it. I didn't have it set up for notifications, but I did know how to access it. And I'd read a couple of her entries just prior to my leaving town. And I thought it was such a gift that she made that blog, um, because I could look back as far as I wanted and hear as many details as I wanted about her sickness and her struggle and being in hospital and everything. Um, And I could only, you know, do as much as I want and no more, but it was so nice to hear her whole story from her perspective at the end of her life in a way that was concise and didn't exactly have an end because you never know. And she got a very intense infection at the last minute. So she didn't really know that she was dying, but I thought it would be nice to be able to leave that. It sounds morbid. It sounds like you're, you know, overly focused on the future maybe, but I think it is. It's kind of a gift, like, so I decided to start a CaringBridge, and I'm not gonna write much in it because not much is going on for me right now, but as I do work on how to resolve the stress that comes with these kinds of things, and I, my guess is that I'm gonna just kind of take my surveillance into my own hands and spend some money that insurance would not reimburse me for, and go to get a diffusion weighted MRI, which is much more specific than a typical MRI. Or maybe I'll find an amazing liquid biopsy that's actually proven to work. Some of them are showing promise, but a lot of them are just...
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Breast Surgeons, Flat Denial and BRCA2
01/12/2025
Breast Surgeons, Flat Denial and BRCA2
The topic of breast surgery and skin conserving surgery has been a real trigger for me in the past since my first plastic surgeon kept refusing to take the extra skin off of my chest as I requested. The fact that I could talk to Lisa about this without getting emotionally worked up was one good sign--and then I had two other chances to talk publicly about my flat denial story in the past month as well. When it rains it pours! Transcript: Happy New Year and welcome to season two of A Breast Cancer Diary podcast. Last week, I aired my first episode of season two with Lisa Sylvester, founder of the project Still.Me or “STILL project.” She is just now coming out with her new book or two different books, actually the compendium and the anthology of her photography and storytelling project, called "Project Still Me". And the website is project-still.me if you want to look it up, um, it's now available for sale. So on the day of the last podcast episode airing, it was the day before it was available for sale. So if you heard that podcast right away as it aired, you may have been too early to purchase her two different books. So just want to remind you to go back and do that now if you intended to, those books are ideally for the eyes of patients and surgeons, and we talked a lot about the idea of reaching out to surgeons to help them to understand the second half of the story, the half of our lives that happens after we interact with them. Uh, a lot of breast cancer survivors have different things that happen, um, whether they explant or go on to really appreciate their new bodies. Their surgeons don't always get to hear about it. So Lisa's mission in this project, which was an amazingly ambitious and talent filled project of mostly photography and, publishing and graphic design,. This is meant for the eyes of surgeons, especially, and hopefully, we can all come together to partner with these surgeons of ours to get it out in the world and allow them to use it as a tool in their consult rooms prior to surgery. And all of the women in the STILL anthology are, flat. They went flat either after having implants or just straight to flat after a mastectomy. And so it's just another alternative to the very, strongly pushed option of, of having implants. That's so common right now. Lisa has been working with Kim Bowles from Not Putting on a Shirt and getting connected to a very special conference coming up this spring called ASBRS. It is a special conference that is just for surgeons. At this time, unlike some of the other breast cancer conferences, They don't allow advocates into this conference, so there's not an open door for advocates or patient advocates, um, to come in and have a voice. So, unfortunately, we flatties won't be able to attend that conference unless we're doctors, um, especially surgeons. I think, even if you were a doctor and not a surgeon, you probably wouldn't attend that conference. But it is in Vegas this spring, and the hope is that surgeons will be at least open to the idea and will see some of the images in large scale format. Um, they're going to have them in big posters at the conference so that they're hard to miss. They don't have to walk up to a booth or a table to look at the book. They'll have, they'll see the posters in large scale format and hopefully some surgeons, um, some of them already are big fans of going flat. They can appreciate going flat, but a lot of surgeons are really pushing implants, and there's this kind of common narrative that's going around. I'm not sure where it started, but, um, there's a belief among surgeons that women are way more, mentally well in the long run if they have implants because their bodies look more like their natural bodies or, the bodies that they had prior to mastectomy. And that is, A really great assumption. I mean, it's a natural assumption that I would agree with if I hadn't been through this, um, and talked to so many women with implants, many women with implants are very, very happy with their implants, but many women with implants are not and the truth is that many and most of us who are flat are very happy with our new flat bodies. And I actually had a chance to testify to that in person, um, with my knees knocking at the big breast cancer global gathering in San Antonio this last month in December. I wasn't planning to take the mic and talk to a room full of surgeons, but I just happened to stumble into, um, a talk, uh, about a couple of different studies and I didn't realize going in that the studies were about this topic of mental wellness post mastectomy and, with skin sparing and tissue sparing mastectomies being preferable for women's wellness and mental health as the argument. And I haven't looked at the details or the methods of the two studies mentioned. They were studies out of Japan and the UK, but the outcome of those two studies was arguing for saving as much breast tissue and skin as possible for the sake of, of long term mental health and wellness of women patients. And that kind of, you know, triggered me a little bit and made me wonder if those studies were well administered or if they were asking leading questions, which, you know, those kinds of studies almost are guaranteed to be doing. If you agree to do that kind of study, you're kind of going in with the expectation that you're going to want to praise your personal doctors who've saved your life and saved you from breast cancer instead of criticizing them and the work that they're doing. So, It's really hard to be objective as a patient in that kind of study. It's a questionnaire based study, usually, and it's not done personally. It's not done within the context of community, which is where a lot of our body image healing happens in the context of community. But if you're doing a little survey and you're isolated and alone and you haven't had conversations with other survivors about body image issues, then you may not have even broached the question before. So it's a much deeper issue than what these surgeons were, um, you know, optimistically thinking. And the sweet, sweet man who was presenting the data was just so well intentioned, I couldn't possibly be critical of him. I did wanna tell the other side of the story because he was really arguing for pressing women to save as much breast, tissue and skin as they possibly could. And so many women do not want to save their breast tissue, number one, because they don't want to fear their cancer coming back in that breast tissue, which is a legitimate fear. Um. And so I got up to the mic and said, I am just one person, but I'm very happy with my flat body. And I want to tell you that there are a lot of us who are pleased after going flat. There's a lot less anxiety, a lot less fear of recurrence, whether that's legitimate and rational and based on data or not. It's true. And without any breast tissue, I feel lighter and more comfortable in the world. And I. didn't take long to get used to my body and I'm heterosexual, female presenting, married to a man who is male presenting. And I'm very, very happy with this flat body of mine. And I had to fight for it because my surgeon wasn't willing to give it to me when I asked twice. And the third time I went to a new surgeon and got what I wanted, which was flatness. And of course, you know, I was super nervous, shaking. I didn't want to stay in that room a minute longer than I had to. And the man that I was addressing was very gracious and kind in his response. His motto was, think twice, cut once. Meaning, think twice about taking that extra tissue and skin and then cut. And I told him, I would like for you to think twice and ask once and cut once, but asking is really important. And that's something that was not truly done for me and so many of the women that I've talked to that have been denied flatness. So that was a big kind of marker in my life as an advocate and, activist. I was really uncomfortable the rest of the whole day, walking around knowing that some of the people in that dark ballroom that I had spoken up in, probably knew me where I hadn't looked at their faces. And I felt really uncomfortable in one sense, but also very gratified. in another sense. And actually this last week I had another really amazing opportunity to speak up about my experience of flat denial with my former surgeon, not the plastic surgeon that denied me flatness. That would have been extremely intense. And emotional for me, but the other surgeon who was in the room, my breast surgeon, who I think knew that I wanted to be flat both times. I'm not 100 percent sure that she knew that because most of my conversation about wanting to be left flat was with my plastic surgeon in a one on one consult with her. So I wasn't really resentful towards this breast surgeon of mine. But I didn't know if I'd ever have a chance to talk to her in a clinical setting again. Unfortunately, I've had a little recurrent scare, and so I did have a chance to talk to her this last week. And I told her very clearly that I was very unhappy with the outcomes that I was left with on both of my first two surgeries with her and that plastic surgeon. And I asked her if she still used that plastic surgeon, and she said she did. And so I pressed her to really think about it and I gave her some literature from Not Putting On A Shirt and Stand Tall AFC to point out to that surgeon in particular about how women who say they want to go flat really want to look, we want to look flat without any extra skin. And so I was very direct with her and kind, and I think I got my point across, and I still trust her enough to go into surgery with her. Uh, this week, I'm going in on Thursday for, uh, a surgical biopsy, uh, for at least one lymph node. I feel another lymph node kind of, you Coming out too, so I may have two lymph nodes that are taken out, but we'll see what comes out of that. I thought that my own personal breast cancer diary was over, but we may be having some diary entries about my continued experience here soon, both on my YouTube channel, Estrogen Diaries, and here possibly, because I don't want to leave you in the dark about what's going on with my personal diagnosis and my own story as I'm telling other people's stories here. So the other thing that I talked to Lisa Sylvester about last week in the episode that aired on Sunday was her BRCA2 mutation, and I also wanted to address that. Two, two topics I wanted to talk about today. First was breast surgeons and plastic surgeons in particular. Second one was the BRCA2 mutation because I hadn't had, I don't think I've had it a guest yet that had um, prophylactic mastectomies because of the BRCA2 mutation. And I talked to Lisa a little bit about her kids and the fact that they would eventually get tested for that same mutation. Just wanted to describe a little bit about what BRCA2 is. There's BRCA1 and BRCA2. They're both mutations in a very good gene. BRCA is not a bad gene, it's a good gene that we all have. Um, you And if you have a mutation in it, it means that gene is broken. So the, the gene itself is a, a cancer DNA repairing gene. So it repairs the DNA that would lead to cancer or further cancer growth in specific cells. Um, it's kind of a, a self fixing bit of DNA. And that gene is, is a really, really life giving gene. And for whatever reason, some individuals have developed mutations that can be passed down from father and grandfather, mother and grandmother, and they don't hit everyone. Of course, it's not guaranteed. They're going to be passed down to you if your mother or your grandmother had them. But once you know that someone in your family has had them, it is very wise to get tested these days. And not everyone, but some individuals who are testing positive for that mutation. So that broken. bit of DNA of genetic, um, machinery do choose to have prophylactic mastectomies, which is a preventative mastectomy, to ensure that they don't ever get breast cancer by taking out all of the breast cells, the breast tissue. And it also puts your, uh, ovaries at risk of ovarian cancer, that mutation. So some women go as far as having their ovaries removed as well. And that's a really intense and personal decision. Um, it's something we may talk a little bit more about with others who come on the podcast. But for now, I just wanted to define what that mutation is, how it works, uh, why it's a little bit scary and why so many women are sacrificing their breasts because of it. There have been. Celebrities that have sacrificed their breasts because of this mutation. And I'm sure there are celebrities that have not done so. Because there are plenty of people who have the mutation that have chosen not to give up their anatomy because of it. It's a tough decision. Something that you really should talk to a genetic counselor about because that's what they're trained to talk about. And probably just a regular mental health therapist would be a good one to talk to you about it as well if you're interested and you're testing positive for BRCA2 or BRCA1. In the future, I'm sure we'll learn about other mutations that are passed down. Germline mutations are what they're called. Um, there are also a different type of mutation that happens inside your particular tumor and your particular cancer cells, um, that are not passed down from your mother or grandmother, and those are called somatic mutations. So that's pretty confusing and really basic if you're interested in breast cancer science and studying some of the genetic studies that are going on right now. There's so many of them. A lot of why our cancers mutate and develop strength over time. And come back and recur and develop metastatic strength is because they have that ability to mutate somatically. So within the cell, within the tumor. Um, so it's something that's happening just in that little microenvironment of the cancer. And we don't understand why or how that happens, and we're developing drugs more and more to address each mutation. which is really, really hopeful. Um, it's amazing how fast we do move considering all of the barriers in place that keep us from moving fast in developing new drugs. I'm always in awe when I'm down in San Antonio at that conference that I went to last month, learning about all of the drugs that are being tested. in a given point in time. I also learned a lot about, um, a, a really fun study on DCIS that I'm super excited to follow. It's still very, very young in its development. It's only two years old, but they did do preliminary data reporting on it. I'll, I'll do a video on that soon on my estrogen diaries, YouTube channel. So stay tuned for that. The next guest that I'll have is Tina Conrad from. The podcast called DJ Breast Cancer, and she's no longer running that podcast, but she has lots of episodes and seasons to listen to, and I'm a fan of that one. It's just another storytelling podcast telling individual women's stories in their unique ways and unique perspectives. So we'll hear from Tina, Her interview is mainly about, um, being a professional with cancer, with breast cancer and staying a business professional with breast cancer. Most of us bow out of our high intensity jobs as breast cancer survivors, but some of us stay with them and she was one that stayed with it. And I'm just so in awe of that and I wanted to hear more about that part of her story. So she'll be my next guest, but not necessarily next week. I think next week I may do kind of a last minute update about my own cancer recurrence scare and how it turned out. I should know. Um, hopefully I'll know my pathology results by then, and hopefully this will all be behind me, but I can kind of tell the whole story from start to finish, um, in the next episode if there is anything to worry about and tell you my next steps and my plan, uh, just to let you know kind of more personally what my December has been like, it's all been within the month of December that I had an MRI and ultrasound, and now I'm having biopsies, so I will keep you up to date in my personal story in the next episode, I'm hoping, and in the meantime, I will be On, estrogen diaries, making videos about the San Antonio Breast Cancer Symposium. So, watch that if you're on YouTube. And I will see you in one of those places very soon. Again, Happy New Year and stay well.
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STILL Ourselves after Mastectomy
01/05/2025
STILL Ourselves after Mastectomy
My instagram friend, Lisa, had a vision less than a year ago for a visual way to show the how the flat community has become a healing movement for women who don't want the usual reconstruction options post-mastectomy, and this week it is coming out into the breast cancer space as a work of art! I love that I can share the story of a vision come true and share it on the day before the end result comes into the world! Find Lisa's project on her website here: https://project-still.me/ Transcript: Kathleen: My guest today is Lisa Sylvester. She lives in Richmond, Vermont, and I've been following her on Instagram for probably about a year now. We're fellow Flatties and proud of it. And she's the owner of a company called Interrobang Design. She and her husband run this company. Small business in Vermont, and it's a graphic design studio, and she has a new project coming out of this graphic design business that I'm so excited to talk to her about today. I haven't really dug in with her about it just because I wanted to save the conversation for the podcast. So this is really, truly fresh, new information that I'm super excited to hear about. Welcome Lisa! Lisa Sylvester: Hi. Thank you. Well, I'm happy to be here. K: You're a previvor. So Tell me a little bit about how you found out about your BRCA2 mutation L: Yeah. So I have been having breast cancer and ovarian cancer scares like throughout my adult life and my OBGYN worried about me and at one point she said, you know, what do you think about doing genetic testing just so we can know if we are really have something that we need to be aware of, uh, you know, could inform my healthcare kind of thing. And I was like, yeah, let's, let's just find out. And I thought it was going to be negative. I don't really have a strong. Um, family history of cancer. In fact, no breast cancer history at all and only one, um, ovarian cancer, um, person in my family. Um, my genetic counselor thought it was going to be negative two. Um, and so we were all surprised when we came back with a positive for BRCA2. Um, so I'm the first in my family to find out about it. which was the can of worms everybody warns you about with genetic testing because that meant I now had to inform my entire family about this new, new this news. K: And how long ago was that? L: That was three and a half years ago. And I was pretty, I'm pretty, I'm a research monger. So like when I found out about it, I was like, okay, what are we going to do about this? And I knew what my options were before I had my consultation with my, um, doctor and, and, um, it was my genetic counselor and an oncologist actually, and, um, they were surprised that I wanted a mastectomy. They actually tried to talk me out of it because they said they're really good at catching cancer early. I thought, well, I don't actually want to catch it. I would rather like nip it in the bud if we can possibly. So I felt like, um, the mastectomy was the right choice for me. Um, and they also pushed implants right at that initial consultation. And I wasn't sure that that was right for me either. And when I told them I was interested in going flat, that set off alarm bells for them as well. K: Had you ever met anyone that had had a mastectomy? L: Um, so, um, interesting story, when I told my mom about this, she was in her 80s, and my mom is a total caregiver, she likes to help people feel better, uh, but she was, like, had some dementia, and hearing loss, and as I was talking with her, I wasn't sure she really knew what I was saying to her, um, but all of a sudden she got upset It's up and ran outside and started talking with her neighbor who was trimming her shrubs for her. And she came back in and she said, Suzanne, my neighbor had a double mastectomy and she'd be happy to talk with you. So she didn't know how to me feel better herself, but she knew who to put me in connection with to do that. So she marched me out to the driveway conversation with this woman who I barely knew about mastectomies and she showed me her scars and, and we had a long talk about it and she was the first person I met. in real life that had had a mastectomy. My grandmother, my mother's mother, also had one in her forties, but I was told it was not because of cancer. And I learned from, again, healthcare professionals that back then it was not uncommon for women to have mastectomies for other reasons. Um, so she had a radical bilateral mastectomy and wore prosthetics after that. K: When Suzanne showed you her scars, was she flat chested or was she, did she have…? L: She was flat chested, but she wore prosthetics. K: How did you feel when you saw her scars? L: You know, I had been looking around online, so they kind of, I knew a little bit of what to expect and they kind of felt right in line with that. So I wasn't surprised really to see them. It was like confirmation. Maybe it was like, Oh, okay. Yes, this is indeed what this looks like. K: And how did you find the flat community for the first time? How long did that take? L: Um, it didn't take long. So I first found, um, photos. Of flatties, just on the internet, just random searches um, and then I found not putting on a shirt and actually use their surgeon, um, directory to find a surgeon and, um, and then I think I found the Instagram groups, um, and I was like, wow. Here it is. There's where all the answers are. Yeah, it was pretty compelling. Because, you know, the, um, the story that we're fed, right, is that, um, women need to have breasts. That women, like, women and breasts go together, right? They're not separatable, if that's a word. But, um, that we can't be whole or healthy or beautiful without them. And it was those women that I found on, um, Instagram, I told a very, very different story in them. I saw strength and empowerment and beauty and femininity and, um, confidence. And I was like, this is not that trope. This is something very, very different. it was super compelling. And I knew once I saw that, once I found that community, that that going flat was right for me. K: Did you find them using hashtags or just, did you stumble upon them accidentally or? L: Hashtags. K: Mm hmm. And describe for our listeners that haven't experienced this phenomenon. What does it look like? What did you see when you went on to these different accounts and saw photos of women that had gone flat? L: I saw an incredible amount of bravery. Um, people that were just sharing their truth with, um, pretense. So it was about showing exactly who they are, showing their bare chests, telling their true stories, um, without doctoring it up to look pretty. It wasn't like the perfect Instagram photo. They were raw and real um, and it was just very, very compelling. K: What are some of your favorite accounts that you remember from way back? L: Um, so “not in the pink” was one of the first ones—just a fashion icon and what's not to love. Um, and then, um, I don't, I don't, I'm, I'm really bad at remembering people's handles. So I'm not going to be able to come up with a lot of others. But there were a handful that were sort of, um, very forward, meaning that they were just posting frequently. So seeing a lot of their, their content and, um, just really really liked what they were saying, um, liked the whole sort of body positivity stance that they were promoting, whether that was intentional or not. Um, it was people that were showing themselves without makeup, like I said, regardless of their size or their shape or else was going on, they were just showing their bodies as they were. And um, there was an honesty there that was just really, really important. Um, moving. K: Have you ever met someone from the flat community in person? L: Um, so this is actually a good segue into my story… so we have a small group in Vermont, a a small Facebook group, and I had actually met with a Flatty before I had my surgery and it turned out that she was my neighbor's cousin, um, my neighbor's niece. And, um. And I, she was so helpful. We sat and had coffee together in Richmond and, um, she, I, she's like, ask it, ask any question, just whatever you got, throw it at me. And she was so helpful and, um, really reassuring. And I remember leaving that meeting thinking, holy cow, flat is really flat. Like her chest was so flat. it was startling to me. Um, and then, And then I was like, okay, it's okay. Like it was a little bit of a shock, right? flat, flat was. Then I met some other people from that group. We try to get together periodically, but we're dispersed throughout all of Vermont. So sometimes it's hard to for us to kind of like, logistically get together, but we've had a couple of, um, you know, get-togethers, maybe a handful of people, but I've like, craved. Wanting to be around other flatties in real life. Like I've always wanted to have that meeting a “flattie in the wild” experience. that just hasn't happened. And, um, I don't know. It was like last spring I got a from Stand Tall AFC saying, Hey, you should join us for one of our walks. And it struck a chord with me because I was like, I really do like crave this connection with other flatties. I am not a real big, like event person. So like the walk itself didn't really tick any boxes for me. I'm not like some of these big events and retreats, they don't really appeal to me. But, um, but I was really curious about this walk and, and wanting to be around other flatties. So I reached out to this Facebook group in Vermont and. Kind of said, Hey, anybody want to go to Massachusetts three hour car drive for this walk? Um, and I was expecting a no, because we've historically just had hard time gathering people together. somebody was like, yeah, I'll go. So we were off and running. And so me and another woman went down to Massachusetts and did this walk in Lowell, Massachusetts. And it was super empowering. It was. It's rainy and cold and, you know, we're walking topless for three miles throughout Lowell, Massachusetts. And, um, but, but just beyond all of that, it was just the conversations that we had together and the sort of instant connection that we had with each other that was really beautiful. Um, but it was at the end of that walk where one of them said, you know, I really wish there was a billboard right there in Lowell, Massachusetts, talking about aesthetic plaque closure for breast cancer awareness month. And I think I was just then becoming aware of the work that's needed be done around AFC, around it being offered consistently about it being done well for people. and so that really struck a chord with me when she said that and I thought, well, you know. I don't really have an interest in doing a billboard. We don't have billboards in Vermont. And I kind of like that. And, um, but I'm a designer. So I was like, there's lots of ways that we could create awareness first that apply closure. that's where this whole project started. K: Okay, let's get into the project. It's called Still. L: It is called still. Yeah. K: Tell me about the name. L: Yeah. So, I'll give you a little bit of history, um, and how it connects with the studio for us. So, um, we, we do in our studio, what are called “no money fund projects” where we—with other creative colleagues we work with and know and love—usually on a non client based project just for fun. No one gets paid, we get the band together, we do this great project and we create something really beautiful. so my thought was, instead of a billboard, let's do some sort of publication, let's make it a no money fund project. Let's invite my creative colleague friends to see if they would want to be part of it. And um, Yeah, and this publication can be used to create awareness of a stuffed fly closure. That was the idea. There was nothing more to it than that. It's not an especially meaty idea, but it was sticking and kind of nagging at me. And so I put the, put the idea in front of a couple of my friends and I was, again, kind of expecting a no from them. This is a little different from the normal No Money Fund project. It's, It's, you know, it's an advocacy piece. It's a heavier topic. It's personal. I just wasn't sure whether it was going to strike the right chord, but I got an immediate and resounding, let's do it from them. So the next thing was to just, to really start working in fleshing out this project and, and the name was the first part of that. had kicked around a couple other names, which I cannot even remember anymore what they were, but this one just kind of stuck with me. Okay. And, um, it became a working title initially, and then I was like, this, this is it, this is it, because it, that's what this is all about, is showing our truth of how we are still, and, um, in hindsight, five months after the fact, six months after the fact, um, the right name because I cannot tell you how it's resonating with people, both within the breast cancer community and beyond, um, people get, get the idea, get the message. K: I love that it's, like when I first saw the word still, I was thinking still photography and then, you know, of course, then you realize as your kind of messaging gets out that you're talking about a different meaning of the word still. It's actually the meaning of remaining, remaining, um, certain things that a woman thinks she might lose when she goes flat. L: Yeah, yeah, That's exactly it that we are still ourselves and that's exactly what society and the medical community has told us we won't be right. or that's been the case for for many people. But, yeah, so just stuck and that was that was that so 1 of the 1st things we did, or the 1 of the 1st things that I did to sort of move this project along was to put together a style guide for the photo shoot. to develop the branding for the project and. You know, this is in my wheelhouse, what I do, and I was kicking around different, different ideas and trying out different directions and everything, and the logo that, that is today, um, just was, again, I, I've had this experience with this project where things are just sticking or pestering or poking at me, or just like raising their hand and saying, it's me, it's me, and the logo kind of did the same thing, like that logo, you know. I don't know. It just, it was the right logo for the project. K: So tell me how you gathered women the first time you did a photo shoot. I don't know how many photo shoots you've done? L: We've only done one and it was, um, it was a little hair raising for me. I'm not a big social media person, but, um, I was working with Christy Raymond at Humankind Casting. And she's STILL’s executive producer and she's got a lot of casting experience. And I was kind of thinking she would just kind of take the reins and go with it. But, um, I had this connection to the community and she's like, you know, really, we should be doing this through your social media. So I was like, okay, here we go. And I was looking for six to twelve flatties for the project. Six was my minimum for getting it off the ground. Eight to twelve was kind of the sweet spot where I felt I could get the diversity that I was looking for. when I thought about this publication. In the hands of a person who's making reconstruction deci decisions in that exam room with their, with their surgeon or physician, want them to see something that they can identify with. So I wanna show women of all ages, sizes, and colors. So as they're flipping through this, they're not seeing what anesthetic closure looks like, but what it looks like on a lot of different people. And, um, so that again, they can identify it with it. And when I think about like the hope that this project can provide. It lies there because when you, you know, when you're going through something difficult like that and you're on, uh, you're feeling pressured to make decisions, there might be a timeline that's factoring into it, it's big and scary, um, finding that one thread of hope that you can grasp onto can mean the world, right? So eight to 12 was kind of where we were going. And again, we just did the casting through Instagram and Facebook. We ended up getting, I'll add that it was, um, we were shooting in Worcester, Massachusetts. We had this gorgeous studio that gave their space to us for the shoot. And so I was expecting a local response because again, it's a no money fund project, so people would have to be able to get to the studio and to the shoot on their own means. And, um, So I was expecting local and I'm like, I don't know how many flatties there are near Worcester, Massachusetts. Like, what's this gonna, how's this gonna work? We got an international response. We K: Oh my goodness. L: All over the country, all corners of the country, and as far away as Europe that submitted casting submissions for this project. K: Wow. I recognized Farhana from Texas and I saw Linda from Massachusetts, so I didn't know how far it went, but that's crazy. L: It is crazy. We have, um, we have someone from San Francisco. We have two from Texas. We have Florida, Michigan, Illinois, Pennsylvania, uh, Massachusetts, Connecticut, and Vermont. Yeah. K: Was it a one day shoot then, or? L: A one day shoot and shooting 12 people in one day is a big, a big task, getting them through wardrobe and hair and makeup, having their photo sessions. And then the other piece of that day was that we actually interviewed them. So, um, they were interviewed after their photo sessions and those interviews became the foundation for the text for the book. K: Mm hmm. Is it a text heavy book? L: It is not. So, um, a photo heavy book. The, so the photos are. I can't wait for photo for people to see these photos. photographer is an internationally published fashion photographer, and his eye, his vision is just incredible. We're, I was just so thrilled that he said yes to doing this project. And so when we were casting, we had asked people, what, what are your top three still phrases? How, what are your top How are you still yourself? And so everybody has their still phrase. And then what we did was we had them work with our wardrobe stylist who put together looks that exemplified those phrases. then when they got on set, we actually had a huge piece of Plexi with the still logo printed on it. And then we had people actually paint their words on the Plexi, um, to complete their still phrases. And then, uh, so we had, know, we had these people who, who had their, um, The sprays that really resonated with them, right? They're painting it. They're wearing a look that complements that and then we're taking pictures that just really pull all of that out. So when you, for example, um, we have a flatty Emily from San Francisco who is still fierce and if you can just take a glance at that photo and get fierce from it, like those messages just come through so beautifully in the photos. So the text is, really You know, you marry a compelling story with a compelling photo, and then you've got a sort of a powerhouse of a, of a communication happening, right? Um, and these stories, so we ended up doing two, two publications. Um, it, when we saw the stories and the photos, we realized this needed to be more than just this little booklet that I was envisioning. we did, we designed a 132 page art book, basically. Um, called the still anthology that shares more of their story and in their own voices. So it's not heavily edited. It's very much their own voice, um, and it shares the good bad and the beautiful and they're very real. and then in the compendium, which is the smaller booklet, that's a 36 page booklet. That's the book that's for healthcare providers. that book is, um, even lighter text. So we've, um, really focused that text to be about like what influenced people's decisions to go flat, what...
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Just Checking in with a Resource
11/24/2024
Just Checking in with a Resource
I'm jumping in here with a quick holiday tip in between seasons. I highly recommend "After Breast Cancer Diagnosis" if you're in need of a mentor... or if you're feeling ready to offer a mentoring ear to a newer patient. Find them at . Transcript: I'm checking in today in between seasons because it is the holidays, and the holidays can be a pretty stressful time of year on a normal year, and this being an election year, it's extra stressful for some of us. And I wanted to share a resource. I am not affiliated with this resource except for the fact that I found my mentor through them. If you're struggling and you need a breast cancer mentor, encouragement around your breast cancer story and just someone to talk to one-on-one, I recommend going to an organization called After Breast Cancer Diagnosis. Their website is . And that's where I found my mentor. They are incredibly responsive and very personalized in their approach to matching breast cancer patients with mentors. And at the time a couple of years ago when I went to them for help, they got me matched up with someone just like what I asked for right away, someone with my same diagnosis and someone with my same interests and advocacy. And so if you're really struggling, ah especially around triggers with regard to your breast cancer trauma, I just wanted to recommend this if you need it. I will be back in January with season two, and I have some great guests lined up for that season. And I hope you have a wonderful holiday season in the meantime. I'll talk to you soon.
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Reflecting on Metastatic Lobular Breast Cancer
11/10/2024
Reflecting on Metastatic Lobular Breast Cancer
Last week's interview with my fellow advocate Leslie brought up a few things that make Metastatic Breast Cancer Unique. In today's episode I'll reflect on things like "lines of treatment," "progression" and "dormancy" when it comes to mets and I'll also talk about some of the ways that science is progressing for metastatic Lobular Breast Cancer patients. Don't forget to rate and review the show and if you want to enter for a prize for doing so, email a screenshot of your review to me at Listen and Subscribe on: - - Or watch on YouTube: Support my work by making a donation here: This episode has not been transcripted.
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Thriving with Metastatic Lobular Breast Cancer: Leslie Pifer-Pien
11/03/2024
Thriving with Metastatic Lobular Breast Cancer: Leslie Pifer-Pien
My friend and fellow lobular breast cancer awareness advocate, Leslie Pifer-Pien joined me on the podcast this week to talk about her first seven years as a metastatic invasive lobular breast cancer patient. Leslie was diagnosed de-novo, which means, she didn't start with the mild kind of cancer but went straight to stage four, or "metastatic" cancer. She's taken it in stride, but finding the right oncologist isn't easy with Lobular Carcinoma. Lisen in as we chat about all that she's learned. Transcript: K: My guest today is my friend and local advocate, Leslie Pifer-Pien, who lives in Camas, Washington. She was diagnosed in May of 2017 with de novo metastatic breast cancer—lobular breast cancer. And she has a history of working as an electrical engineer as well as a college professor here in the Portland area with exchange students. Leslie and I just met about a year ago, and we worked together on the local advocacy teams with the Lobular Breast Cancer Alliance as local advocates, meant to be working in person together. But most of our contacts have been online still, but we did meet on national or global Lobular Awareness Day a couple of weeks ago for the first time in person. And that's when Leslie agreed to come on the podcast. Leslie is my first guest who is a metastatic breast cancer patient. I've been trying so hard to get my various friends who are metastatic to come on and they have all tried, but things have come up and gotten in the way. And I'm sure I'll have many more guests who are metastatic, but it's really important to me to feature the stories of patients who are metastatic because we just don't hear their stories often enough in the breast cancer community and I just feel that they are so, so very important. So thank you, Leslie. It is a vulnerable act to come on and speak about this journey. And I know you have a very unique one to share about. So thank you so much for being here. It means a lot to me. L: You're welcome. Thank you as well. K: Well, I wanted to ask you a little bit about your experience of discovering, without the medical professionals discovering, that you had breast cancer. And I know this was, not a typical way of discovering and I know that you're a spiritual person and I love to talk about spirituality on the podcast. So I'd love for you to tell the wild and crazy story of how you came to suspect that you had breast cancer. L: Wow. Thank you. Because it's still a surprising story to me now, seven plus years later! I had gone for a mammogram like everyone else and I was called back, which wasn't surprising. I knew I had dense breasts. My sisters get called back. So they did a call back and they said, Oh, it's perfect. Everything's fine. And I got my piece of paper saying normal mammogram results. But then I had this experience that I, I don't know quite how to explain. Every day I'd go in the shower and this voice would come to me and say, “you have breast cancer… but on the right hand side” and it would, I would listen to it for the 15 minutes I was in the shower. I’d forget about it. And the next day would happen again. And then all of a sudden, five, six, seven days, I'm like, my goodness, the same thing is happening over and over again. I think you might need to listen! And having a scientific background, like you said, I had been an engineer originally. I was looking for others to validate it. So I showed anyone who was willing to look at my breast. “Do you see anything? Is there any reason I should have breast cancer?” And everyone would look, I seemed like I, I was kind of crazy, like, no, there's nothing wrong. But I couldn't get the thought out of my head. It was so strong, the feeling, that I finally went to emergency, urgent care. And I don't know why I chose urgent care. I was just like, here I come. I got my courage up and I said, I have a normal mammogram. They called me back on my left hand side, but I think I have it on the right hand side. And the woman listened, the doctor listened and called me in for some extra testing, in which they did an ultrasound, they finally looked like they could see some cancer, but it was early stage, they said. So I left all happy, well, not happy, maybe relieved, right? Okay, thank goodness it's not metastatic. And then when I went to see a surgeon for my mastectomy, he said, “Oh, you're kind of swollen. Your lymph nodes don't seem good.” And then they did a breast MRI and some bone biopsies and found out I indeed was metastatic. K: So why did they do the bone biopsies? Were you having pain already in your bones? L: I was... so when they did the ultrasound, the funny thing is I'm like, “Oh, please brace my body.” I did have back pain. It had been the first time in my life ever. So I don't really know what that experience is like, but I wanted them to bolster my body. But you ask why did they do a bone biopsy--it’s because sometimes you have a different type of cancer in your body and they wanted to validate that. Yes, I have breast cancer and it’s what is in my bones. Because they saw it. K: Oh, okay. It lit up on the MRI. L: Well, my chest lit up, so they knew it was other places, like in the ribs…. Oh, and then they did a PET scan, and they saw it was through the rest of the spinal system, but they needed to validate what they see on the PET scan and the MRI was indeed breast cancer, and so they strongly suspected it had traveled already when they did that bone biopsy. K: Okay. And then your, your journey took you to a few different oncologists just based on the fact that you had lobular—you were doing a lot of your own research and you were looking for a better and a better second and third opinion and eventually you found it. What was that like when you found your, your better oncologist that gave you the treatment that you're now working with? L: Do you know there was such a sense of stress that I could feel in my body that I was constantly trying to put myself in some ways in medical school. I was trying to do online research and try to understand because I was aware that these well educated doctors, well meaning oncologists, didn't have the information they needed and I was concerned that I was not being cradled as much as I needed to be. I think they were doing everything they could and I think they were wonderful people. So I don't mean that as an insult against them, but they just don't know enough about lobular. And, the second oncologist, I mentioned to her, maybe I want to see this doctor up in Seattle who's a specialist. And she actually was wise enough to realize she didn't know enough. And she contacted the specialist up in Seattle and talked to her. And they talked about my case, and I went up to see her too. And the sense of needing to research every morning, these two hours of, “what do I need to know about breast cancer?” Poof. That that stress is gone. It feels really good to be in the hands of someone who knows. And also, there's a lot less fear because I had developed what is called the ESR1 mutation which tends to sound super scary and people say you have to be on this one drug and only this one drug, but you can't take another, it can't work in conjunction with another drug and it's overall survival is relatively small…. So I'm like, it doesn't sound so good. And this doctor that I'm seeing in Seattle had so much knowledge. She's like, “do you know what? I think we have other drug choices that will work for you. And I've seen this enough that even this ESR one mutation may revert back. Let's not get crazy about this.” And so there was a sense that she had from treating patients, from working in research that really, allowed me to feel a lot more peaceful. K: How many years? Through your experience, did it take to find this, this new oncologist that you're working with now? L: So I had spied her through some online conferences and I realized, Oh, that's a doable distance because Seattle from where we are here is maybe three and a half hours. I mean, not ideal, but it was, it was doable. It wasn't like getting in on an airplane and having to get there. But it wasn't until I had an oncologist who admitted she didn't know enough to really help me that I started the search. But getting in with this doctor was a long waiting process. Well, five, six months. K: Oh, wow. Okay. L: You know how every month you feel so vulnerable. You're like, Oh, what if I don't get my treatment. But I think also this doctor realizes lobular tends to move very slowly. And she had looked over my paperwork enough and seen it. And also I think she's that kind of a busy woman that I was really thankful to be able to get into with her on any basis. K: And now you see her or her assistant monthly every other time, right? L: I see, um, every, I can see them as often as I need is the truthful answer, but we've chosen every two months cycle. So two months for the physician assistant, then the next two months with her, et cetera. K: Okay, so you've got a lot of access to her. How many years between your first oncologist and this oncologist that you've settled on? L: My first oncologist which in itself was a gift—my brothers were both, my brother in laws were both in the medical field and they realized I was over my head. And they both, one works with medical equipment, in particular PET scans, and he knew where to put out his feelers. And the other one was very knowledgeable as well. I think they knew I was faltering. And they found my very first oncologist for me. They had contacted all their friends so my first oncologist was a fantastic match, really knowledgeable. But when he left to practice in another country, I needed to find another. And that lasted, that relationship was oh, I guess five years. It was a beautiful five years. And then my next oncologist was very new and loving and willing to admit when she didn't know enough, I needed more. And that lasted maybe eight months. K: So you don't, it doesn't sound like you regret the first line of treatment that you underwent? L: No. I was actually on a study drug then that is now very typical for women with metastatic lobular breast cancer K: Which one? Was it a CDK4 6 inhibitor? L: Yeah, I had Ribocyclib... or quisquali—it’s called either name. And then my hormone blocker was an aromatase inhibitor called Letrozole. K: So it was the CDK4/6 that they were testing at that time because Letrozole was already on the market probably. L: Yes, exactly, it was like, it was, I think it was the Mona Lisa study. K: Yeah. Were you super excited to get into that study? L: I was super excited. But the realization of, gosh, this is such a fragile ground we're working on. Cause I remember there was a bunch of women in the study and suddenly there was just me. You only stayed on till progression. It made me realize how incredibly lucky I've been and how very indolent, personally, my cancer is. Mine is so slow growing. Certainly intelligent, but not as intelligent as others. So in other words, it doesn't mutate. K: Were the others on, did the others have lobular breast cancer as well or did they have ductal also? L: By in large it was ductal. I was never let know how many people had lobular, and other people stopped it because people have problems with joint pain. There's a lot of joint pain issues, but, um, fortunately, that wasn't really a big problem for me. K: And you mentioned “until progression.” So have you had an incidence of significant progression in your story? L: Yeah, so, the thing about scans is they do a pretty good job, with glucose avid cancers in your bones. Um, but not all lobular is very glucose avid. So what you see on PET scans are the really hungry cancer cells who are consuming lots of sugar, but the ones that are a little bit more laid back and not eating sugar, they don't show up on the PET scans. so what ended up happening is I was getting back PET scans that said basically stable, but all I could tell you is I couldn't bend through my pelvis. And I think I felt like my breast was feeling different. It's, you know, it isn't something I can really tell you it was this problem and that problem. It was again, this, This internal feeling and um, she released me one from one appointment thinking I know big deal in the second appointment like nope It's just not right and I spoke up again at which point she did some blood work and they saw They did sorry a breast biopsy where they found the ESR1 mutation. K: And that was an incidence of progression then. L: Yes, I, when I then transferred care up to Seattle, I was given an FES scan and they did see that there was a lot more cancer in my pelvis beyond the glucose avid. K: Right. The regular PET scan. L: And I kept having this feeling like “I'm the Tin Man. Why can't I bend?” It was, you know, it wasn't, it wasn't quite painful at that point. But yeah, I felt like I was a Tin Man and always having exercised and move my body. I just, it wasn't right and I knew it. K: So it sounds like you didn't have an FES PET scan until you went up to Seattle just a couple of years ago. Okay. Okay. Now I want you to tell the story of what happened when you went up to Seattle because it sounds like you got a very new insight on your disease and understood what you needed a little bit differently. L: Oh my goodness. Yeah—between oncologist number two, the lovely woman who said “this is more than I know about.” She had a replacement show up. So I saw the replacement oncologist locally one time before going up to Seattle. that doctor said, emphatically, you must be on this med. And then we said, well, what if we don't just, oh, you're going to die. So I was really, um, rather convinced that I only had one choice. And when I went up to Seattle, she, uh, my oncologist there is such a calm human being she's like, no, I think we got a bunch of different choices here. Um, so she had me do some genetic testing and which I found out I carry a BRCA II mutation mosaic. Not germline, so I didn't inherit it, and it's not because it developed through cancer. It's something that developed when the zygote, when I was forming in my mommy. So it's a weird mutation which opened a whole—since she did the testing—that opens up a whole bunch of different drugs I can take in the future, some PARP inhibitors. Um, but really what she gave me After she did the FES scan, she goes, you know what, I think you're doing really well, you are I think I can, I think I can give you quite a few more years, but we never know, and I don't think you need to, you know, the, the development of this ESR1 mutation was like, um, was so horrifying and shocking. I thought it was an end point, but it really wasn't. And she was very calm about it. So I really, really appreciate that woman. I actually call her La Papess, Popess. Yes. K: All right. So did you change your line of treatment when you went up to see Dr. Linden? Okay, L: Yeah, so Dr. Linden said, um, good news. We're going to still keep you on a CDK4 inhibitor, a different one, which made me very happy. And we chose to do Fulvestrin, which is the butt injections, which aren't, in fairness, they aren't the most enjoyable thing. And the monthly, You know, you have to go and get them monthly. So unlike the pills, the pills I could do three months without seeing an oncologist, three to four months, which I really appreciated that. So yes, I'm up there every month, but they're working well for me. And I think as cancer goes on, I just become appreciative. I think I controlled life more. “Why can't I get these drugs for six months?” I don't want to look at anyone for six months. And then you go, okay, you go once a month. And now I make it kind of a fun date. Sometimes I go by myself, sometimes I go with my husband, but I take nice walks and I enjoy Seattle. I pretend I'm traveling. So yes. K: And did you stop taking the CDK4 6 inhibitor or the letrosol in the meantime? L: So before she put me on a Palbocyclib, which is another CDK 4/6 Inhibitor, and Fulvestrant, yeah, she did stop for a period of time. And she said to me, “Breathe, relax, you'll be fine. It's a slow enough growing cancer. Nothing disastrous is going to happen in these few months, you'll be just fine.” K: Okay. And did your bending at the waist issue go away then after? . L: Well, I have new issues. Um, which may be collateral damage due to cancer treatment. But also I have, I have these cysts, these tarlov cysts that are pushing on my sacral nerves. So I have inflammation going on in my S1, S2 nerves. So movement through the pelvis is generally hard, but I do believe it is not related to cancer. K: What is your daily energy level with the drugs that you're taking now? L: Do you know, I don't feel that I'm really fatigued from cancer. What I do feel is because I guess to be more exact about how I feel, I feel like I have this perpetual sciatica feeling. So standing and walking are not pleasant. So if I sit all day long, I'm very happy. If I do a lot of bodily, you know, weight bearing exercise, I don't, body aches and says, please don't do this to me. Um, so sometimes I'll take something for the nerve pain in those cases, but I'm also learning like different ways of getting my exercise in. So instead of doing a standard upright class. I can tell you chair aerobics can get your heart rate up. K: Good for you. L: Well, right. Or incumbant bicycle. My pelvis is like that. I don't put any weight in my legs and I can get my heart rate up. So it's a learning process on my end, but I wouldn't probably go to a Zumba class for sure. No. K: Yeah. I'm so glad that you're able to describe what it's like, um, because I encounter you to be an uninhibited. Co advocate. Like when I met you in person, I didn't notice that you were terribly uncomfortable. You were able to be very energetic and animated. And it's just, it's interesting to me to think about, um, the way I used to see metastatic patients and the way I see metastatic patients now, there's very little difference in terms of your presentation and your ability to get out in the world, drive around, do things. You're very functional, and I think that's partly because, like you said, you had a very slow growing and probably somewhat indolent cancer, like sometimes it probably has completely stopped growing. Do you feel like that's the case? L: Yes, yeah, yeah. I had a few years of scans where there was nothing going on. Exactly. K: Okay. And how anxious do you get when you get up to those scans nowadays, after all these years of living with the on again off again, do you ever have intense anxiety or is it a much easier journey? L: Do you know, I don't know that the PET scans caused me any anxiety. There's a sense of You're just gonna deal with whatever comes up You're gonna process and go through so I don't think that causes me anxiety. I think sometimes Um, I don't keep my balance well, and I let myself get, get swayed by other people. I, I'm more anxious when I don't have my center. know, you'll have other people say, Oh, they can't see this. They can't see this. I'm going to do this kind of biopsy, that kind of biopsy, and those kinds of things are very stressful for me. I think for another person, that knowledge may be beautiful, but this whole idea of what they don't see, and what's it doing to me, is something that I, as long as I say. Let's separate those two things. Living with uncertainty is just something you learn how to do, and you need to learn how to do better every year. I have to just say, yeah, it's uncertain. Yes, that's true. K: And when I met you close to a year ago, was that your first step into the advocacy space? L: Yes. I think I just had a really hard time with that one. Healing myself enough before I felt like I could take on others. I, you know, I don't...
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Reflecting on Pinktober 2024
10/27/2024
Reflecting on Pinktober 2024
Today I'm just reflecting on how Breast Cancer Awareness month has gone for me personally this year. I hope it's been a good one for you! Email me a screenshot of your rating or review of my podcast to be entered in a fun giveaway! is the place to send it! Listen and Subscribe on: - - Or watch on YouTube: Support my work by making a donation here: Transcript: Today's the last episode in breast cancer awareness month, 2024. And so I just wanted to do a special episode reflecting on my personal experience this year in October, Pinktober. I don't feel like I need to recap on my interview with Marina Blackford, which was my last interview. She is such a master educator that she defined all of the terms well, and I don't feel like there's much to say to clarify. except to remind you that she is going to be in the New York city marathon on November 3rd. so just about a week from when this airs and she will be on Instagram at her name, Marina Blackford, all one word, um, posting photos of that. So if you want to support her, cheer her on, follow her and see her photos, be sure and look for her at Instagram. But, uh, this being the last week of October, I am pretty wiped out. I don't know if you're watching this on YouTube right now, but if you are, you could see that I'm pretty tired. And today I leave for a four day, three night reunion retreat with some of my closest girlfriends, celebrating 20 years of friendship. And so that seems like a really good way to cap off this October, uh, out at the beach. Just, you know, Laying around at the stormy rainy Oregon coast so we're going to be out at cascade head this weekend when this podcast goes live and That's a really really fitting way for me to end because I have had such a busy and eventful and Really prosperous month this month, just like last year. So the main thing when I reflect over my month is that I've I've been thinking about how important it is every year to meet new breast cancer patients and new survivors and people who will become leaders in our community. I will also meet people who will not become leaders or who aren't even interested in sticking around in the breast cancer community. But, This month I met quite a few that I think will be sticking around and who will become very influential leaders people who are willing to speak out and change our norms and challenge our systems. And so that's the most hopeful and encouraging thing that's come out of this breast cancer awareness month for me. While I was down in San Francisco during my half marathon, I met a doctor who was a flattie and a lobular survivor. So she had my two things. That I'm really passionate about advocating for in common and she's a doctor and she's connected in her community of physicians. And so that was the most hopeful thing just to hear how passionate she is and how determined she is to be vocal about her experience and to help change the way that we deal with especially lobular breast cancer being underfunded, under researched. The second thing that I'm most excited about this month is that I started a pilot project here locally for my local breast cancer survivors community. Uh, it's not just for flatties, it's not just for lobular survivors, it's for breast cancer survivors in general. And it has to do with my passion for health and being a health educator myself. I became a nutritionist about eight years ago. Just a couple of years after I was first suspected to have very early breast cancer and started getting extensive screening for breast cancer. And I thought nutrition was the way to address it. I thought that studying nutrition was the answer as many women do. And now, after, about 10 years of studying nutrition, both formally and informally, I've also been studying all the other lifestyle factors, and I've determined that while nutrition is not something we can prove moves the needle, I do feel like it kept my cancer small. It is not something we can conclusively say or that I can conclusively say to any of my patients is going to solve their breast cancer problem or keep their breast cancer from coming back. What I can say that science is telling us very clearly is that exercise can keep cancer from coming back. Not always, but it's a really good bet. And so what I've decided to do as a nutritionist, as a way to kind of quell my feelings of conflict over the overemphasis on nutrition in our community is to come out as a nutritionist in favor of exercise as someone who has never been an athlete, who has never been motivated to exercise and still am not on most days. I would like to have a system in place locally where I can be held accountable to my goals to walking three days a week for an hour at a time, which is what science is telling us right now is the best thing to keep recurrence at bay and to fight off. The environment of inflammation that happens so often in our lives for various reasons. And so I decided to start a pilot project here in Oregon, and I intentionally didn't go out to those groups that I'm already connected to, but really was seeking out strangers in our community so that I can get really unbiased feedback and input. To develop this program and make it bigger and make it reproducible for other communities. So I'm calling it walk away from breast cancer. It's just a way to keep walking. It's a weekly check in on zoom and then getting together in person about quarterly to do a relay race in person as a team walking, not running. And it's really pointed at people who are not athletes who are not motivated to get to the gym or exercise regularly. So it's really meant to be an accountability tool and the relays are just a way to have an end goal in sight that's common and shared and a way to celebrate together. So like I said, it's a pilot project. It's really small right now and intentionally so. And I'm hoping that by next breast cancer awareness month, this will be my main focus is spreading the word about this and maybe even reproducing it across other states or countries. So stay tuned for news about that. I won't be talking about that a whole lot this year because it's going to be pretty small. Um, but I might talk about it. I might check in and give you an update now and then on the podcast. The other thing I realized toward the end of this breast cancer month was that my, flat community, That has been a really huge part of forming my new identity as a breast cancer survivor. Here in Oregon has grown a lot. We get new Flatties joining, Oregon Flatties on Facebook every month and people are really interested in connecting. It's a very close and very safe community. And what I've discovered is I've been one of the main people welcoming new folks, and there's been enough growth in my area that I feel like I'm ready to launch a little off sprout, little subgroup of flatties here, uh, in the rural part of the Willamette Valley that is west of I-5. So I think we've pretty much decided to call ourselves, Willamette Valley. West Valley flatties, an offshoot of Oregon flatties, and we don't have a Facebook group yet or anything like that, but I think we're going to be getting together for happy hour, like, once a month and just getting to know each other. There's quite a few new flatties in our area, so that's really exciting. Something to go forward into the new year with also that's face to face and not online, which is more valuable to me for sure. And I think to most people. So that's exciting. I might be sharing, if you follow me on Instagram or Facebook, I might be sharing our new logo there. I have two new logos in my life. I've been working on the one for Walk Away from Breast Cancer, and now today I've been working on the one for West Valley Flatties as well. And, um, getting some taglines and stuff like that in place is always fun. It's part of the really fun part of being an entrepreneur and a creator is making those things that are going to be educating the public about what we're doing and why we're here. The really sad, challenging part of this breast cancer month for me has been losing another friend to metastatic cancer. In this case, she didn't. die to metastatic breast cancer. Actually, she was a a pre vivor in the breast cancer community. I met her down in San Francisco last October for flat day. We walked across the Golden Gate Bridge together and hung out, in different settings there and just really connected with her. She was just a very innocent light. Um, joyful soul. Her name was Susanna and I had planned to meet up with her this last week when I was in San Francisco last weekend and I was going to be doing a half marathon there and I'd been in touch with her by text and told her that I tried to check in with her when I flew in on Friday. And just before I flew in, I texted her and I didn't hear back from her and I knew that she was really sick and in the hospital and that. She had had an occurrence of cancer, metastatic cancer. And, um, so I knew when she didn't text me back. She's an excellent communicator. And I knew that she probably had passed. But I went ahead and finished my trip to San Francisco before I chose to look on Facebook and see if her feed said anything. I didn't, I don't have Facebook on my phone, so I couldn't have checked down in San Francisco anyway. But I did as soon as I got back checked in with a friend. It was on Facebook to ask her if she'd seen anything and she looked on her Facebook page right away and, and she had passed. So this is friend or family member, number four, since last August that I've lost to metastatic cancer and That is just a reality of being and staying in this community long term. You're going to lose friends and fellow advocates along the way. And that's really hard. Sometimes it's triggering. It's been triggering, also to hear my, my other friend who has just been diagnosed with metastatic breast cancer, who is still living, but hearing her tell her story, at our local Portland walk. The other day was really hard to cause it reminds me of my mom and her story. Um, so yeah, it's just, that's just a hard part. And it was especially hard to lose someone during breast cancer month this year. Um, and just apprehend that there will be further losses in the next year as well. So something to counterbalance that, uh, really joyful piece of news this month personally was that my stepson Mason got engaged. He has, Been talking to his girlfriend for a while about marriage, and we knew it was somewhere on the horizon, but we didn't know if he would be able to do it anytime soon. And so really proud of him that he made that step, and that this next year is going to be one of a lot of joy and celebration as a result. And I'm very, very excited about his girlfriend being a long term member of our extended family. So, that's just something that is. brought me up and buoyed me during the really challenging moments of the last month. Another couple of things that have brought me up are my Achievements. I did a 10 K successfully in Vancouver, Washington, a couple of weekends ago with my friend Debby, who is also my walking partner and will probably be a leader in Walk Away from Breast Cancer with me. And then I met one of my closest, longest friends down in San Francisco and did a half marathon. That was really challenging. Um, It's funny how much more challenging just doubling your distance can be. And probably I hadn't trained as intensively as I should have, but a half marathons just over 13 miles. And it was the most beautiful 13 miles I could have picked because we started from the ferry building in San Francisco and walked all the way across the golden gate bridge. And then most of the way back, almost all the way back to the ferry building, which was a half marathon. And we did that with the Pinkathon. Fundraiser down in San Francisco for Breast Cancer Research Foundation, and my friend was six months pregnant So that was quite a feat for her as well. I'm not sure that I'll ever Attempt a half marathon again except for in relay form because I just don't know that it is good for my body to walk that much at one time without resting. And in that setting, it's really hard to give yourself a rest because you're wanting to finish and those around you are wanting to finish. And so I'm glad I did it once. I don't know that I will aspire to do it again. I hope that I do many 10 Ks again because I feel like that is a healthy amount of walking to do without a significant break, at least for my body and my age. But I'm glad that I tried it and that I did it, and I'm hoping to take a team next year to do that same walk or race in relay form so that we can still experience the beauty of that course. They don't even have to rope off any streets at all. It's very easy to do that walk. And so hopefully we'll do it again with Pinkathon next year if the dates line up and work for us as a team. But that was a major accomplishment for me as a non athlete, as someone who does not tend to get energy from exercise. I have chronic fatigue syndrome and I, I generally get more tired after exercise. So I had to really be careful and train carefully for this and work up my stamina and work up my ability, to withstand that kind of distance and that kind of, Lack of rest in the midst of, of exercise like that. So really proud of myself. I didn't get a medal for that one, but I did get a medal for the 10 K and I, I definitely treasure the medal that I got for the 10 K up in Vancouver. Uh, that one's called the girlfriend's run. And I really want to do that one again too, as a walk. Um, cause that was really fun and beautiful as well. The other thing that happened for the first time this October was we celebrated the first ever Lobular Breast Cancer Awareness Day. Hopefully it will be recognized globally across many countries and states next year, but this year we kind of did it on the run and I think it was maybe five or six states that proclaimed it an official day and Oregon wasn't one of them, but that didn't matter. We got together. outside of my oncology clinic in Northeast Portland with my oncologist, Dr. Stanton, and two other advocates in the lobular community, one who's been around for a while and one that's brand new. Joined me and we all talked together. The four of us, we tried to pass out literature, but we didn't get very much done in that department, but hopefully next year we'll get inside the cancer center and we'll have access to actual cancer patients, which would be a big change so that was a really fun day and I'm sure we'll do different things, different years. There were lots of webinars, some of which got recorded. So keep an eye on the LBCA's website. Lobularbreastcancer. org to find the recordings there if you're curious. And of course, my involvement with Stand Tall AFC was significant again this year. I was in charge of tabling and I got to help advocates across the country apply for tables at big walks and small walks. And then when they got granted tables, I taught them and mentored them through the process of talking to breast cancer survivors and patients about Going flat after mastectomy, the importance of the phrase aesthetic flat closure when talking to your surgeon and that ensuring that you don't get left with lots of extra skin just because you don't get an implant doesn't mean your surgeon won't leave you with lots of extra skin hanging out. And that's why the term aesthetic flat closure exists. And so we're doing a lot more advocacy and having a lot more conversations with patients for the first time because of this new tabling. Initiative that we have, and I'm hoping that I can stick it out and do this again next year, at least here in the Northwest. Maybe I'll cut back my role and not be quite as national in my focus, but hopefully I'll continue to do tabling myself and maybe mentor others to do it in the Northwest here. And my role in the Lobular Breast Cancer Alliance setting is still firmly in place as well. We hope to plant two more local advocacy groups across the country. Right now we have one in South Carolina and one in the D. C. area. I expect there will be one in Michigan before too long and hopefully one here in the Northwest, but, um, I'm having lots of fun in that role as well and hope to continue there until next breast cancer awareness month. So lots of work to do, but lots of work got done this, this month and I am thoroughly exhausted from it. But in a good way, and, I know that my mom is looking down on me and feeling proud of all the work that I'm doing. And hopefully Susanna is there with her and cheering me on as well. And, I have a little incentive for those of you who are fans of the podcast. I've been collecting some gifts to give out. And, uh, because I have had very few ratings and reviews on the podcast players, I'm hoping that this month I can ask you to rate and review the podcast. If you're a fan, it is definitely binge worthy now. I think I have 17 or 18 episodes. And so if you've been able to hear more than a couple of them and you're a fan, Please go to your podcast player, whether it's Apple or Spotify or some other podcast player, and leave me a rating and review there. And if you do so, you can screenshot that rating and review and email it to me at kathleenmoss@protonmail com. And tell me if you'd like to be on my email list while you're at it. But if you email me a screenshot, I will enter you into a drawing for some really cool and beautiful things. Um, I'm, I've got some bras, I've got some shawls and towels that are really beautifully woven. And then I've got some breast cancer magazines from Wildfire. Breast cancer magazine and a book of poetry that's been donated. So I will ask you if you win, if you're drawn, and I'll have about 20 people that'll be drawn. I'll ask you if you would prefer something to read or something to wear. And based on that, I will send you a little gift in the mail. If you're willing to send your address to me, which I will not use for other purposes or share with other organizations. And this is just kind of a thank you for being a part of this community for supporting me. And also a way for me to get some ratings and reviews and get some feedback from the folks that listen to me most. So thanks in advance for doing that. Again, my email address is Kathleen Moss at protonmail. com. And you can send me that screenshot right away. I'll talk to you next week on Sunday. Bye bye.
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Marinia Blackford: Mom and Cancer Coach
10/16/2024
Marinia Blackford: Mom and Cancer Coach
In this episode I got to interview a fellow youtube/breast cancer recovery coach and influencer, Marina Blackford! I'm so honored that Marina has been willing to spend this time with me. We talk about her story of lumpectomy AFTER mastectomy, her desire to run the NYC Marathon, and her insights into the spiritual side of healing from this disease. I'm so excited to share this interview, both here and on the official podcast youtube channel, @abreastcancerdiary - Links: Marina's fundraising page for YSC and the NYC Marathon: Marina's web site: https://marinablackford.com/ (No Transcript)
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Reflecting on Keytruda: Risks and Benefits
10/09/2024
Reflecting on Keytruda: Risks and Benefits
Watch on YouTube: Support my work by making a donation here: Links from today's episode: Meryl's Instagram Accounts: @merymeryl; @thestoryofcaptaincharlotte; and @rompandrollick Meryl's business email address for parent coaching: This episode doesn't have a transcript.
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When Triple Negative Feels Toxic
10/02/2024
When Triple Negative Feels Toxic
In earlier episodes with stories like Marquita's we've seen ways that Triple Negative Breast Cancer can be "not so bad" but in younger patients it's often the reverse. Meryl Opsal is my guest today, and she's got a harder story to tell about the effects of her immunotherapy. Meryl is a powerful woman, and if there ever was a cancer fighter she is my image of one. She and her family have been through so much, and they are still going through it, but they are managing well together. Stay tuned for a follow up episode in which we will talk more about the new immunotherapy drug called Keytruda that's showing a lot of promise for triple negative patients. Watch on YouTube: Support my work by making a donation here: Links from today's episode: Meryl's Instagram Accounts: @merymeryl; @thestoryofcaptaincharlotte; and @rompandrollick Meryl's business email address for parent coaching: Meryl's website: Transcript: Kathleen: Today's guest is Meryl Opsal. She's a mom of four and eight year old kids, an education consultant in early childhood education and a podcaster that I listen to every week as a bedtime story. Her podcast is a delightful children's adventure story that just started around the same time that my podcast started called The Story of Captain Charlotte, and I highly recommend it, whether you're an adult or a kid! Her story grabbed me on Instagram recently, and she's my first guest that is really. pretty much a stranger to me. I haven't gotten to know her very much. I trust her because she is an amazing storyteller and a very vulnerable person with regard to her cancer journey. And she has an important story to tell. I asked her on to talk about her experience as a triple negative survivor. She has endured triple negative breast cancer, ductal breast cancer and was diagnosed with stage 3C, which means that she had extensive lymph node involvement and she's been through the ringer with her treatment. And that's the main story that she has to share today. So Meryl, welcome. I wanted to ask you about your experience with the drug Keytruda, which is a new immunotherapy drug that has really been full of promise and hope for oncologists across the world. You have a little bit different story to tell about it and I wanted to allow you to do that here. So please tell us a little bit about your diagnosis and your treatment and, and how that went for you. Meryl: Okay. I can definitely do that. And first I just want to say thank you so much for having me. I really appreciate it. I'm on a mission of education, advocacy, and demystification of breast cancer. And so I just really appreciate the platform to spread the word a little bit more. So really my diagnosis starts with my sister's diagnosis because my sister was diagnosed with triple negative breast cancer in February of 2023, which was a huge shock to my family because we really had no history that we knew of, of any kind of breast or gynecological cancers. And I went to visit her and help support her through some of her treatment. She's on the East Coast. She said, Meryl, you really have to get a mammogram. And I said, “don't worry. I just turned 40. I am going to see my doctor next week. I'm definitely going to get a mammogram. It's happening.” I went to see my doctor and she did a full exam. I even remember that while she was feeling my left axilla, she was manually, you know, feeling, making sure everything was okay, and I was talking to her and I said, my sister was just diagnosed with breast cancer. She said, “oh my gosh, I'm so sorry. Definitely going to get you in for that mammogram.” I only mentioned that because she didn't feel anything and I wanted to just point that out because of how quick some cancers can progress. Some breast cancers, some breast cancers can be very slow and you have time and mine was not like that. Mine was not like that at all. It was like a bomb went off in my body because I had this mammogram and the mammagram was two weeks later, and there was already cancer in my left axilla, as well as in my breast, and I got a letter a couple days after my mammogram saying that I had dense breasts. Now, I know that there's a new law that's around the whole country that you'll be notified if you have dead breasts. In California, that law already existed at the time, and it said, “please call us for a follow up ultrasound.” So I called the ultrasound place, and I said, I'd like to make an appointment. I got this letter, and they said the next available appointment is six weeks from now. And I said, oh, I was really nervous because of my sister, and I said, “I know it just says dense breasts, but I really, is there anything you can do?” And the woman on the phone said, “don't worry, if it needs to be stat, your doctor has the mammogram report, she'll call us and it'll be stat if it needs to be stat” and she said, “but just make sure that your doctor sends the ultrasound order because we haven't gotten it yet.” So, I kind of forgot about it. I was very busy recording for The Story of Captain Charlotte and running my business and I kind of, you know, moved on with my life. And I mean, I did notice that my left breast was starting to get bigger than my right. I googled it, you know, it could be hormonal, whatever. I kind of wrote it off. I kept reassuring myself saying the doctor has the mammogram report—she would tell me if it needed to be stat and I just sort of wrote it off and just said it's in my head “There's no way. I also have breast cancer right now. That would be crazy.” So it comes to two days before my ultrasound I call and they say “oh no, we haven't gotten the report yet.” “Oh, that's surprising.” I called my doctor and they said, “Oh yeah, we'll send it right away.” So I go in for the ultrasound, and the most peculiar thing happened—they only took images of my armpit. It was really confusing, seeing as how I had dense breasts. And, uh, I've had two babies. I know what it looks like when they're measuring things on the ultrasound, you know, the tech can't say anything, but I'm seeing black spots, I'm seeing her measure them, so I just get this pit in my stomach. And on the way home I got a call and she said, come back, the ultra, the uh, radiologist wants images of your breast as well. And that's when I went and got my husband because I knew it was about to go down, went back, and got the ultrasound. quickly after that, got the biopsies and the staging and all of that. All of that moved quickly, but I actually really have no evidence that my doctor ever looked at the mammogram report. I don't know that she ever looked at it. It's really, really upsetting. I cannot, unfortunately, sue her for malpractice because the cancer at the point of the mammogram was already multifocal, meaning it was already stage 2, and so my treatment options wouldn't have changed. K: Wow. M: It's just this really unfortunate thing. I probably would have been staged. 2A, 2B, and instead I ended up being staged at 3C, which the law says, oh, well, your treatment options were the same, so there's no case. But just the lived experience of being staged 3C was so terrifying and so scary and I just really lost trust in medical providers at that point. And I think that's a good thing. Actually, I think people should have a very healthy skepticism that their providers are going to do anything for them that you expect them to do, even the bare minimum. And I think most people who have been through breast cancer have come to understand that—that we really need to be our own advocates. If there's a test, you need to make sure you get the results yourself. You look at the report yourself. You know, if a prescription needs to get called in. It's, you know, it might not happen. You need to follow up. You need to follow up always yourself. So that was the first time I really learned that lesson. Um, let me just have a sip of water—I need to constantly drink water in order to talk. So the gold standard of treatment for triple negative breast cancer is called Keynote 522, it includes 12, uh, 12 doses of carbotaxol and then four of adreomycin and taxotere, which is also known as the red devil. And then through all of that—that's about six months. And then continuing for six months after that, every three weeks, you're supposed to get an infusion of Keytruda, which is a very new drug. It's an immunotherapy drug. And so I started chemotherapy in July. I was able to continue running my business. I ran a very popular and successful parent and me business. So I taught classes to babies. Um, they came with their parents and toddlers came with their parents and it was my dream come true and it was beautiful and amazing and I loved every moment of it. It was very, very physical, very physically taxing. I was able to do it through the carbo taxol portion of the chemotherapy but then when it came to the red devil, the Adreomycin, I had to stop. So around November of 2023, I noticed, (I noticed!) I was getting extreme like 10 out of 10 pain in my parroted salivary glands every time I ate. And. When I say 10 out of 10, I do not say that lightly. I, I gave birth to my second child completely naturally, and this was beyond. Quite a bit beyond. The amount of pain—I was blacking out. I was going into cold sweats. It was really, really, really painful. So I brought it to my oncologist. “What's going on with my salivary glands? Every time I eat, this is so weird.” And anyone who's been through chemo knows the line. It's chemo. It's chemo. Everything is chemo. Everything is chemo. Oh, it's chemo. It's chemo. It's chemo. I've always shared my breast cancer story on my Instagram and I get a lot of really impressive helpful feedback from my followers and one of my followers has an autoimmune disorder called Sjogren's and she said it sounds like you might have Sjogren's. I had never heard of that before and so I asked my oncologist I said one of my friends said that it might be Sjogren's and she literally said to me “I don't know why we're talking about Sjogren's right now!” and we just moved on and she just swept it under the rug and then I finished my chemotherapy. December 26th was my last one and I had one infusion that was just Keytruda. And when you get just Keytruda, you don't get any of the premeds that you get with the chemotherapy including a steroid. Usually when you get chemotherapy you have a steroid as a pre-med I didn't know at the time that that steroid pre-med was protecting me from the Keytruda in a lot of ways even though it was still hurting me. When I had this one infusion, I think it was like January 16th—it’s funny how we remember all these dates because they're all so important. Honestly like getting hit by a truck. Related to Sjogren's, um, in my body just went completely off the rails. I, within a day, stopped making tears, stopped making snot, stopped making saliva. There's a mucus membrane lining up your, your Your bladder that protects you from your, the, um, the acid, the acidic nature of your urine from burning your bladder, that went away. And so, all of these things happened to me, and then a week later, I had my double mastectomy. So I was very, I did not know what was happening to my body, and then I had the surgery. I was recovering from the surgery at my parents house and my parents are both in the medical field. And so we had a lot of time to talk about what was happening to me, not just with my double mastectomy—they took great care of me for that, but also all these symptoms, like I wasn't able to eat all these foods, I couldn't breathe. You need, anyone who's taken biology knows, you need a wet mucous membrane to breathe. I was having trouble breathing. There were multiple nights where I thought, “I don't know if I'm going to wake up because I can't breathe through my nose and I cannot breathe through my mouth because my mouth is so dry” and my dad did some research and he was the one that pulled up a case report saying that there's evidence of people getting Sjogren's from a similar drug to Keytruda, another immunotherapy drug. And so, we printed out, we found more case reports, we printed it all out, and brought it to my oncologist. I brought my mom with me, and we, we brought it to my oncologist and I said, This is what's happening to me. This is what's happening. And she went, “Huh, how about that? Immunotherapy does the weirdest things.” So that was the second time I learned that you really cannot trust your providers to do even the most basic things. Even the drugs that they prescribe that they're supposed to be experts on, they may not know about. And it's not advisable to Google a lot of things around breast cancer, but there are some things where you really do have to—you have to Google, you have to be informed. And I really wish that I had when my, like in November when the symptoms first happened in my parotid salivary glands, that I had really started googling that and pushed her a little harder to send me to a rheumatologist. So luckily now I'm under the care of quite a few doctors. I have a special eye doctor, I have a few rheumatologists, and I'm on a whole bunch of drugs. But unfortunately it seems like a lot of the symptoms are permanent. So what happened to me is called an immune related adverse event and when you're talking about immune related adverse events, uh, permanent is described as symptoms that last over a year. So, my symptoms are going to be permanent in that respect, but also probably permanent in a more colloquial respect, like probably forever. It is possible that my body will heal, but it's such a new drug, and there's really no reports of this resolving. Very, very few people have gotten Sjogren's from Keytruda. I actually have never met anybody that's gotten Sjogren's from Keytruda. It's just these case reports that I've read. It's much more common for people to have issues with their thyroid, their kidney, their pituitary, um, other types of autoimmune issues. So, I really don't know what the future holds in that respect. Yeah, so that's, that's pretty much how I was diagnosed and kind of what was going on with the Keytruda. K: Did your Sjogren’s affect the way that you healed from your mastectomy? M: Yeah, oh yeah, I mean, ever since the first symptoms of the Sjogren's, I have not been allowed to have just breast cancer. I have breast cancer and a serious autoimmune disorder. And especially at that time when I didn't know what was happening to me, I didn't know how to eat. I've had to completely relearn how to eat because, not like literally how to eat, but the things that I can put into my body and successfully chew and swallow. Because I have such a small amount of saliva. All my favorite foods, all the things I was used to eating, uh, my ability to casually snack, you know, all of these things completely went out the window. And after surgery, it's very important to nourish yourself with healthy foods, to eat, to make sure you're eating enough in the day, even if you're not feeling good and that was a struggle. That was a real struggle because I also wasn't able to cook for myself. I was at my parents house. We already eat very different diets because my parents eat meat. I don't eat meat. And they're kind of like, “I don't know what to do. What do we cook for you?” already and then there was this also surprise thing, which is like all these things they were trying to make for me. And then I literally couldn't eat it. It was so frustrating. And the bladder pain was really off the charts because I did not know what was going on with me at all. And it was to the point where I was having trouble walking. That's how much it hurt. And really, I should have really just been focused on the intense pain and discomfort that I was going through from my double mastectomy, which was almost a side note to this mystery thing that was happening to my body. So, yeah, I mean, absolutely. Absolutely. K: Your actual wounds, um, and incisions did heal pretty well though. They didn't have trouble healing? M: Well, I actually did have some trouble healing because the treatment for this type of immune related adverse event is prednisone which can delay wound healing. And so when I went to see my oncologist with those case reports saying this is what's going on with me and what I need is what it says in there is prednisone, so you have to write prednisone a prescription for prednisone for me. And she said, okay. My plastic surgeon found out and he said, you have to go off the prednisone immediately. And it had already at that point caused some wound healing and I needed a couple extra stitches in one spot. It, it, yeah, it caused a little bit of a delay, but everything eventually did heal up fine. K: Did you get, um, implants or did you get a flat closure after a mastectomy? M: So I currently have tissue expanders. And, um, planning on having them exchanged for implants in January. K: And how's that gone? Has your body responded okay to the expanders? M: Yeah. Yeah, I would say so. I mean, expanders are notorious for being uncomfortable, and I can confirm that that is true. They are uncomfortable. However, most of my breasts are numb. So, the discomfort is probably mitigated by that a little bit, because I can't feel a lot in that area of my body. Um, but yeah, overall it's been, it's been okay. It's been okay. I am very much looking forward to the exchange surgery though because I've heard the implants are a lot softer and they'll be more comfortable. So I'm, I'm really looking forward to that. K: And when is that? Is that pretty soon? M: That's in January. So, um, after I finished chemotherapy and my surgery, I had 29 rounds of radiation and there's some sort of complicated math problem about how quickly the radiation leaves your body and they figure out exactly when you're able to have surgery and it's usually around nine months after radiation you can have surgery. So that's why I have to wait until January for that exchange surgery. K: And how was the experience of radiation for you? M: Um, radiation was hard. Radiation is kind of, kind of a mindfuck because unlike chemotherapy where it's very concrete, there's a medicine, you're seeing it go into your vein, you feel it. Radiation. It's like, it's invisible, you know, it's invisible, but in your mind, you're like, it's radiation. Like, know, you think of Hiroshima or something like it's, it freaks you out. And then there's also the aspect of it where you're on a table, exposed, alone, in a room. And something I did not know about radiation, that I know now, is that they need you to be in the exact same position every single time because of, they have it like all mapped out on computers and they need it all lined up perfectly. It's all very, very precise. Which is good, because we don't want our heart or our lungs radiated. But one of the ways in which they keep you in the same place is they lock, or at least I should say for me, because I know different places do it different ways, but for me, they created this mold of my mouth and my neck, and very, very tight to my mouth and my neck. And then that's clipped, locked onto the table. So it's literally this like mesh, hard plastic mask that locks your head onto the table. So you're exposed, alone, locked to the table, unable to move. It's extremely vulnerable. It's extremely vulnerable and you have to do it every single day. So it's just this unrelenting schedule. Your entire life is overtaken by this schedule of radiation. And for me, I didn't really see anything happening for a while. And then when it got to the last 10 days, I would say of radiation, the skin in my armpit started to give up, say, see ya, all fell off. I had third degree burns in my armpit and it...
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Reflecting on Breast Implant Illness and Going Flat after Explant
09/25/2024
Reflecting on Breast Implant Illness and Going Flat after Explant
Today I'm reflecting on last week's interview with Anna Hopkins, who spoke of Breast Implant Illness and the experience of going flat after 18 years with implants. Support my work by making a donation here: Watch this episode on YouTube here: Links from today's episode: Breast Implant Illness Articles and Resources: Anna's YouTube Channel: Anna's Instagram account: Transcript: Today, I want to reflect on last week's interview with Anna Hopkins, if you're watching this podcast on YouTube this week, you will notice that I have a lot of my stand tall materials behind me and on me. we just got our new banners for the new breast cancer awareness month and all the walks this year in October and, uh, had an early walk this year in Oregon. So I got the banner a little early and I've got it on the wall behind me cause we just had our kickoff rally for stand tall for the year. Stand tall is the main flat organization that I'm affiliated with and it's really just present at breast cancer walks and Advocating for flat awareness, flat visibility and flat pride in the community. That's not our official mission. That's just my words. But you can see that our slogan this year is "Two, One, or None,. Let's stand tall together" so we're not. Pitting ourselves against people who've had implants. We are standing United with them as people who've been through breast cancer and had mastectomies. And, that's really what Anna and I were talking about this week or last week on the podcast. So I thought I would include that in my YouTube presentation. My t shirt here is Wendy Sage, who has been the stand tall mascot, and she's holding a sign that says body positive with a pink ribbon on it. A lot of us flatties have resisted the pink ribbon because of all the controversy around it, but I think we're finally most of us are embracing it now as the sign of our community as a whole, even though it comes with a lot of baggage. So, check out Stand Tall AFC and their new website. They've got an amazing directory of flat resources, both flat walks and flat groups that you might want to find in your area if you're interested. But Anna's story was primarily around the incidence of breast implant illness. And this is something I am not an expert in. I don't have a lot of research background in, and so I'm going to point you to resources in the show notes for that one. This is something that has been very shrouded in our community of breast cancer survivors up until recently. With the advent of Facebook and Instagram and the sharing of resources there, we have been able to identify, in our community just so much more quickly. Those people who have gotten sick because of their breast implants. I'm not going to quote any statistics because they're ever changing, but a good amount of people who get breast implants are not able to live with them long term. They have, mostly autoimmune reactions as Anna did. And of course, not until Anna actually had her second set of implants taken out, did she learn about her breast implant illness and, identify that it was her first set of implants that started her down that cascade of what she thought was allergies ended up being autoimmune issues and her second set of implants. She had an even more strong reaction to, but she lived 10 years with them nonetheless, and lived with all of those symptoms for all those years. And then was kind of set free from them in the end when she. decided after 10 years that she wanted them out a lot of people in the flat community are what we call Explanters they are people who have had implants in the past and have gone flat after having implants I didn't realize that when I first joined the flat community. I thought most people were like me and Had gone There's a phrase for it, straight to flat. I don't ever use that phrase, but it is a phrase that is sometimes used to differentiate those who have had explants in or implants in the past and had them explanted. And those of us who just went directly to after mastectomy to flatness like myself. And so I would say out of everyone I've met in the flat community, Probably half have explanted after having implants for a significant amount of time and being very, very uncomfortable with them physically. Some women are also uncomfortable with them psychologically, kind of the way that I and Anna have described. Not feeling ourselves when we're wearing prosthetics. Some women also feel like they're not themselves wearing implants, but usually it's more of a physical symptom, physical sickness, and really it's largely autoimmune kinds of symptoms that people get when they're afflicted with. Breast implant illness, which is actually a thing. It's a medical term. And like I said, I'll link to some information in the show notes. Another part of Anna's story that I wanted to reflect on is the fact that her doctors, when she insisted on getting her implants out, her doctors then did the extremely bullying and psychologically abusive move of sending her to get a psychological evaluation. And I'm so grateful that Anna was willing to tell that part of her story. It is a very shameful and humiliating experience to be sent by any medical professional to have a psychological evaluation, especially after you've made it clear to them that you are uncomfortable with part of your body that's been causing sickness and yet it is pretty common even in these last few years, much more common, I think decades ago, but as Anna shared, not even that long ago, um, in, at least in her region, it was considered normative to send a woman for a psych eval after her expression of discomfort with her womanly shape is how I think the. medical professionals interpret it when really it was just the implants that she was having a problem with. If they could have heard her more distinctly and, um, clearly, I think that's what she was expressing. So, she didn't talk a lot about how that made her feel, but I just, I just wanted to honor the fact that a lot of women go through that very, very Painful and insulting process, and it really is medical battery, in my opinion, to do that to any person to pretend that their, their desire for change or for healing, implies that there's something wrong with their mind or their emotional health. I loved Anna's, very kind of visceral and physical description of her saying goodbye to her breasts and her realization that they were going to be changing and that she wouldn't have that relationship with her nipples. Um, and I just wanted to also kind of point out that just really poignant part of her story. And. And the loss that we all go through, especially when we just don't really know what it's going to feel like to not have our natural breasts. Um, there's a lot of fear of the unknown. I think that happens before mastectomy. And then I so related to the part of her story where she talked about being pleasantly surprised after mastectomy and being delighted with the childlike power that she had, um, her word was power and. Uh, the power of, a, free and joyful little girl and just being herself and not having to carry the baggage of all the, womanly associations and sexualized associations that we carry as grown women. I think that's worth pointing out. I certainly relate to that myself, and that's definitely a part of my joy in being flat myself. I think another part of the interview that was really important to me was connecting with Anna over my memory of being with her. I first met Anna in a yoga class that she was teaching as a part of a retreat for flatties in Palm Springs. And she was teaching us Kundalini yoga. And it was, I think my second time taking a Kundalini class and I was just so struck with her beauty and her grace and calm. And, the next day we went to a breast cancer walk together with stand tall AFC. And, Anna decided to take her shirt off and it was the first time. And she'd been to walks before where women had taken their shirts off as flatties, but that was the first time she was willing to do so herself. And I just happened to be walking next to her when she did it. And wow, I mean, it just bowls you over the emotion of that. Experience being surrounded by other women that have lost their breasts and them all also feeling the heavy and also the light implications of that experience of sharing one's body. I want to talk a little bit about what that's like because it's, it's easy to forget kind of the novelty of what it's like to be in a breast cancer walk and see another woman, especially a flatty without her shirt on. You tend to think as someone who's grown up in the Northwest where there are nudists. And, you know, nudity is not completely unheard of there are, um, mostly hot springs, I guess, around here that are allowing of nudity. And so I've been around some nudity and I'm sure there are nudist communities too, but I've never been a part of that. And then I just went to Burning Man, my last, episode, actually, before Anna's interview was. about my experience at Burning Man and Burning Man is a place where nudity is allowed. And I probably saw a dozen people over the week that were nude, not a lot. Um, some of them riding bikes and some of them walking, some of them partially nude if they're women and fully nude if they were men. And this is different when you're at a breast cancer walk. It is not the same feeling as seeing someone who is exhibitionally being nude, in public. It's a much more vulnerable, much more tender kind of experience by necessity. There is no exhibitionism of it. Um, in terms of like what I'm reading or what I'm feeling when I'm experiencing it, it is just pure vulnerability and sharing. And I personally, when I'm around someone, Nude in the context of Burning Man or Hot Springs, I tend to look away. I don't feel comfortable looking at their bodies, but in a flat Community context, I have learned that it is safe to not look away, and it is actually welcome to look at each other's bodies and appreciate the little differences in the outcomes that we received surgically and to comment on those. That's a welcome thing in our community. It's just a, it's been a really safe community for me and my friends. And that's a part of our stories that may not. Seem relatable to the average person listening to this podcast, but I just want to reiterate how important it's been to me for me to feel the freedom in our podcast to tell Anna how beautiful her flat closure was and to acknowledge the fact that I had looked closely at her body. It's not a common experience and it's not something. That someone like me and my culture and my social upbringing, would normally feel comfortable doing, but it's really important and I feel pretty strongly about it. Especially when someone has a really nice flat closure. It's. It seems really important to me to compliment them on it and to compliment their surgeon on it, because it is so rare in our community to have an aesthetic flat closure, which is what AFC stands for. And as is now a medical term that we can refer to when we're talking to surgeons, there's still an ongoing battle to get. Aesthetic flat closure in the surgical setting. A lot of surgeons are fearful that they will not be reimbursed adequately for it. And we're still working on legislation to correct that and to get that written into the women's rights, bill or act that is allowing for insurance to cover or demanding that insurance cover things like implants, and so, at Stand Tall AFC, we are advocating for the allowance of language to add, chest wall reconstruction to the verbiage in the women's, rights and reproductive act. I probably haven't said that correctly, so I will refer to the act below in the show notes in the correct form, but, that's one of the new platforms that Stand Tall is working on with an organization called Not Putting on a Shirt, which is actually their umbrella organization. So Anna's flat closure being a true, aesthetic flat closure with no extra skin, no lumps and bumps and ripples and dog ears, which is what we call this little, area that if you're watching on YouTube right now, you can see on my underarm. I've got a little lump, just a little one. Most have bigger ones. I can't really complain, but little lump of extra fatty skin that, would normally have. Sat right above my breast and under my underarm. That just kind of sticks out and that's really, really common. Most surgeons will tell you it's unavoidable and unfixable. Certainly all of my surgeons have told me that, but Anna having been a woman who was quite thin and yet had quite large breasts, she was able to, Actually achieve a true aesthetic flat closure with no extra lumps on the side or ripples, at least not any obvious ripples. I'm sure, like she said, she still sees a little bit of bumpiness and lumpiness when she looks in the mirror. We all see some kind of imperfection, I'm sure, but I just, I love that I am free as her friend in this community to comment on her body and commend her surgeon for the good work that he was able to do for her in that way. And I hope that we can all push our surgeons to strive for better work in that area. None of us want to go back under anesthesia and get revision after revision after revision. I certainly don't. Um, But it's really important to get it right the first time so that we don't have to go back under anesthesia and feel like we're being petty to go back and ask for part of our body to be taken off after surgery. So that's that's a really important platform that I will stay on and get back on that. soap box probably pretty frequently on the podcast. It's a big one for us. Flatties really important. Anna talked about how important the flat community has been to her online and how she started her career as an influencer, a fashion influencer on Instagram and YouTube because the other flatties really encouraged her to keep going with her fashion experiments and sharing her photos. And like she said, she was painfully shy. Going into this experience and she has now gained a real following and has a lot of fans that really thank her for their comfort in their clothes as flatties and their ability to play with fashion and experiment and share. Together with others, and so Anna has become a really pivotal part of the flat community online unexpectedly, and, she really gave a lot of credit to the folks that came before her in this community. And I just want to share how open this community is to other women that have lost their breasts. It's really a very accessible community. And like I said, Stand Tall has an amazing directory of different flat groups all across the country and across the world. It's growing all the time. And if you want to see some flatties in person, whether you're a flattie or not, you can find the places, where we are present at the Stand Tall website and places where we've gone and walked in breast cancer walks before together. If you're here in the Northwest, we have. A lot of presence in Seattle and Portland. There's a Medford walk this year that will be pretty well attended, I think, too. And, maybe Centralia. There's a new walk that's just surfacing in Centralia, which is halfway between Seattle and Portland. We might show up to that one as well, but the main one in Portland, if you're local, that's happening this year is at the University of Portland. It's the Making Strides American Cancer Society Walk. We'll have a table there for stand tall. I will be at that table if you'd like to come by and say hi. It's at University of Portland in North Portland. And rumor has it that most of our Flattie troop will be there. So we'll be there Representing with our shirts off. So if you'd like to see some flat bodies Watch for that in person or online. There'll be some pictures. I'm sure that'll come out online Sometime during the last week of October That walk will be October 20th, I believe so Anna will not be there, but I will be there and, my Portland Flattie group will be there. And Miriam, who I interviewed last on the podcast will be up at the same walk in Seattle, the Making Strides American Cancer Society walk in October . And she'll be at the table as well. So you can see Miriam as a half flat woman. She's still got one breast, but she'll be, I'm sure wearing a bikini or a half a bikini so that she's got one of her breasts covered and the flat side showing. So again, I just want to give Anna, lots of credit for being a big part of the flat community and more visible part of the flat community online and kind of holding that banner high for us in her fashion ways. She just has a really particular niche and a special gift and a real playfulness around it too. She's got so much humility. She doesn't claim to be an expert or to know anything about fashion, you know, in terms of, right or wrong, but she just experiments a lot and has fun with her clothes. So I definitely, encourage you to go and check out, Closet Lady Flattie Fashions on Instagram and YouTube. So hopefully you can find her there and you can interact with her there too. She's really responsive. If you comment or ask questions or if you have a question about fashion or a quandary or a dilemma or something she hasn't covered in any of her short tutorials in the past. Next week, I am interviewing. My friend, Meryl Opsal, she is a new friend. She's a fellow podcaster and pretty recently on Instagram, just telling her heart wrenching story of some of the side effects of her medication from , having triple negative breast cancer. Meryl is a truth teller and an amazing storyteller. And so I hope you'll tune in next Wednesday to hear her story. It is more of a typical story with chemo and radiation being an awful, gauntlet to get through and Meryl does it with so much grace. And she also talks a lot in our interview about her parenting journey and how she's learned to talk to her kids about her breast cancer experience as they see her suffering through it, and just being real with them, with the right language. So yeah, check out my next interview next week on Wednesday with Meryl and I'll talk to you then.
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Anna Hopkins, The Closet Lady
09/18/2024
Anna Hopkins, The Closet Lady
My friend Anna Hopkins tells her story on today's podcast episode--a story of Breast Implant Illness that ends in her fully embracing her new breastless and flat chest as a flat fashionista. Please see the links below to learn more about BII and its auto-immune disorders, common among women with breast implants. Links from today's episode: Anna's YouTube Channel: Anna's Instagram account: Read about Breast Implant Illness here: Fierce Flat Forward, Thrivers who Thrift, and Flat Out Love are the facebook Groups that Anna mentioned using herself. Transcript: My guest today is Anna Hopkins, my good friend from the flat community. Anna and I met a year ago in October at the Palm Springs flat retreat. And we've been connecting ever since both on the topic of flat and of lobular advocacy. Anna is a retired dental hygienist. She lives in Tucson, Arizona, and she was diagnosed in 2008 with ER positive, stage two, invasive lobular carcinoma, which we haven't talked about too much on the podcast yet. Her initial lumpectomy in 2008 was followed pretty quickly after by a double mastectomy in 2009 and then she went flat, a whole 10 years later in 2019. She goes by “the closet lady” in her videos on both YouTube and Instagram. And so we'll talk a little bit about her work as an advocate for flat fashion. And Anna, I just want to welcome you to the podcast. We've been planning this for so long. Thank you for coming on and telling your story today. A: Yes. Thank you so much for having me Kathleen. I so appreciate being able to be here and share a little bit of my journey. K: Yeah. So I want to talk about some of your initial diagnosis details and decisions. You happen to have a lumpectomy first, and then you had a real big change of heart quickly after that. And I wanted to hear about that first as you're telling your story today. A: I happened to be watching a show and, um, they were talking because it was breast cancer awareness month in October. I thought, Oh, I should, you know, do a self exam. And I did. I was quite surprised when I actually found what felt like a pretty good sized lump to me, and I was somebody that had already had implants in my body. So, um, it was not always easy to do self exams because of those, and they were saline implants at the time, and I had had them, I want to say, for probably about eight years at that time. So I found the lump and went in to have it looked at. They couldn't find it. Um, the radiologist technician could not find it on ultrasound and I kept telling them that there was indeed something there. they eventually brought in the actual radiologist who had to do the ultrasound themselves and they did verify, yes, that there was indeed something there. And I, from that point, opted instead of having like a needle biopsy, I had begun my research immediately and, and, you know, understood there was like false positives and negatives with needle biopsies and that either way the lump needed to come out. So I just went immediately to the surgical route and said, please remove the lump. So they removed the lump and that's when the diagnosis came back. Really, relatively within two days that it was indeed positive for breast cancer and you know, lobular breast cancer is what they told me when I went into the office, you know, and then things kind of become a whirlwind really quickly. I was assured when I found my team that it was okay to take some time to kind of do a little research because apparently they said that the lump probably had been there for about three to five years they also, I'll never forget this statement that one of the things they said, they said, Oh, it's, it's a great thing that you had implants in your body because it helped push the lump forward so you were able to palpate it and feel it. So I was kind of immediately like, cause I, I kind of felt benign about implants before like it was no big deal. I had nursed my children and my breast, I felt, you know, less than as a woman and I had wanted, you know, to make them look better again. So that's why I got the implants. So I was thinking, Oh, these things are wonderful. It even helped me discover my own breast cancer, you know. I also came into that at the same time having a long history of allergies that seemed to be continuously building and more problems. I did have a great oncologist, I will say, um, he did tell me because of my allergies and things that I had at the time that he wanted to kind of confer with, you know, he was on a board and he wanted to talk to the board. That was kind of, you know, doctors from all over the states, and he wanted to sit down with them because of my long history of allergies and rare kind of conditions already. He also told me at the time he said, you know, I'm kind of concerned that possibly the chemotherapy would be, you know, would be the thing to kill you before the cancer even. So that kind of stuck with me. There were just some, you know, some statements that stuck with me. I mean, social media groups were in their infancy and I didn't belong to any at the time and research online was not as perfected as it is now. And just not the amount of information available, not that it's always accurate, but it was harder to kind of weed through and find anything anyway. At the time it was pretty adamant that it usually will mirror image and the other breast, you know, if you have lobular, that kind of thing. So I was like, okay, which was a really strong point for me to, to advocate for a mastectomy on both sides. Even though I was being told by my team, you know, let's just do the lumpectomy, you know, and if anything, you could take the one breast off. And then my oncologist at the time, though, I will give him this credit again, said, you know, there's really only a 2 percent benefit if you're going to do this chemotherapy and you need to weigh if that's going to be beneficial enough for you. He was seemed to be a little more on the cutting edge kind of information about lobular where he told me that the benefits weren't great and also given my allergies. And he said, and he literally looked me in the face, which I still to this day feel so grateful for, and he said, you know, I have to tell you that the protocol is that you need to do chemotherapy. He said, but I want you to know that I'm not going to lose any sleep if you choose not to. And it was kind of like giving me permission to do what I felt was already the best thing. And it also kind of. Um, not only empowered me, but solidified the information I had found. K: And your tumor was, you said two centimeters. So it wasn't a tiny tumor. It was definitely palpable. So that's interesting. A: Yeah. It was 2. 5 centimeters. Yeah. K: And your, your impression is that it was because it was lobular and lobular doesn't respond as well to chemo. That is the reason why your oncologist said that? A: Yes. And there was very little information about that back then, but there was something, because I, I had really gone down some holes and, you know, finding, I just, it's just what I do. So, you know. found everything I possibly could and I'm grateful that I was able to find something on that. K: Sure. So you decided on a double mastectomy against their wishes. They were trying to encourage you to at most do a single mastectomy. How did you land on the double mastectomy decision? A: I did not want to approach, um, fearful of, um, a mammogram every year. And is it back? And then I've got to go through this whole procedure again. To me, it just made more sense to take them both off. I mean, it, it to me felt like a risk that I just wasn't willing to live with, you know, in a more, it didn't feel peaceful to my, uh, sense of what thriving would feel like. K: Yeah. And so did you get implants at that time when you had the double mastectomy? A: Yes. And I, and I really have to say, this is a part that I really felt a lot of shame in because, you know, feeling so, you know, interested in, you know, research and really wanting answers and knowing how important health is, you know, with the way we feed our body and all those other things. I felt really shameful that I somehow missed the component of implants and the toxicities that might've existed within them. You know, and then I also try to remember to be kind to myself that remember I was given these messages that, you know, hey, it saved my life. It helped me find the breast cancer. And so I, you know, had a friend who was actually a surge, a plastic surgeon of all things and his mother had gone through breast cancer and he himself assured me how safe these were now because they'd been so extensively researched and they'd just been re released and I should feel so good about having him in my body now. And he showed me, you know, how he could cut them in half and they no longer would ooze everywhere in your body. You know, he went through the whole thing and this was even a friend of mine and I was being told this. And so I really bought it hook, line, and sinker and didn't think further through it. Yeah. K: So you mentioned that you had some shame after that, after you had received the implants, how long did it take you to learn about breast cancer illness and the toxicity? A: My gosh. For years. So, you know, in my, my, to get the implants reconstruction, my body, you remember I had implants prior and I think I was accumulating issues. You know, my allergies were increasing all these things. And then they'd name, of course, put the silicone implants in my body. Cause they're like, you have just skin left, there's no fat, you know, these aren't going to be as ripply. It's going to be better overall. So they put, you know, the expanders in my body. My body rejected these expanders. Initially, they told me they would be in my body for maybe three months, you know, and they constantly were, you know, putting more fluid in, more fluid. Cause I had all this extra skin to fill up where, you know, my breast had been before. And the skin kept dying and blackening. I kept having infections. They kept, you know, swabbing them. They couldn't figure out what the infections were. I mean, I was miserable and yet they pumped it full of fluid all the time with all that going on. And then they would do surgery and cut out the dead tissue and continue on and sew me up. And it became so tight with the expanders. And they kept assuring me that, Oh, it'll be better when we get them out. And you know, we'll put the implants in and all will be well. I had that for nine months. They took the implant, you know, the expanders out, put in the implants and, you know, subsequently you can imagine I started the journey with of course, hearing from my oncologist, Oh, they look great. This is a wonderful result. You know, and I'm thinking, I look disfigured and horrendous, but they kept, you know, I looked great in clothes and that seemed to be all that mattered to everybody. And then I was, you know, looking like a normal woman. And, you know, also. newly married, you know, for a year, I felt the pressure of like I needed to make sure I had breasts for my husband. I continued for 10 years with incredible pain and I would always go in and say they're so tight. They're uncomfortable and they would always assure me. Oh, it's fine. You're gonna, you know, you're aging. You're gonna have other issues. You know, it's not the implants. They're safe. I kept, you know, at one point within the last couple years, I kept saying it doesn't feel right. Like I feel like something's wrong and you know, once I decided on the explant, finally, you know, at the 10 year mark, I was like, and I knew, you know, they're only supposed to be good for 10 years. They kept assuring me, Oh, they can stay forever, though the data said otherwise. And I said, I had to then, you know, of course go through the battle of, “I want these out of my body and I want them out at all costs.” You know, I didn't know anything about flat closure. There was no information that I had found about it other than that people that were dying and had no option to live were kind of, you know, flat because they were, you know, had given little time left on earth. And I said, you know, I don't care if I'm disfigured, please get these out of my body. I knew that I was ill and I was very ill and it did not match my lifestyle. Like there's no reason I should feel the way I did and have the issues I had when I lived the way I did. I mean, I'm such a, I mean, a lot of people might think it rigid, but I mean, I'm not someone who is waivers and cheats or, you know, my lifestyle was so clean and so healthy. So I knew that that was the last thing and I wanted them out, so I didn't know about breast implant illness still even at that point but I did find a surgeon that told me about it. K: So you were probably really shocked after the explant then after you took your implants out, how well you started to feel, I imagine. A: It was, it was immediate. I had no expectation. I did not know, you know, of course, I'm still thinking, well, this may be better. I don't know. Immediately my range of motion was incredibly improved and I was still recovering under anesthesia and you know, wounds and things. I could already feel the difference. People would see me and they would say, “What? I mean, your eyes,” like I didn't realize how the physical toll it had taken on my body. They would say, It looks, have you lost weight? I mean, it looked like I lost 30 pounds. I was swollen from the inflammation in my body from those implants. The surgeon at the time who ended up operating on me was wonderful microsurgeon. And he did tell me about breast implant illness and he said, I do believe that you have this. So yeah, it was miraculous how much better I felt. Yeah. It was miraculous. I felt like a whole new human being, even though I still had some chronic issues, I kind of felt like I was going back to the me before I ever had implants on my body. And it was, just so amazing. K: So I want to hear about your experience with flat closure, not just the surgery and the outcome and how it looked, but how you felt going into it and then how you felt later coming out of it. A: I was scared. I didn't know anybody else that was flat. I didn't have any pictures. Um, I didn't have any information. I just knew it was what I needed and I expected to come out disfigured and that I was just going to be okay with that. so I, you know, that was scary. Part of that journey that really stood out for me was I was referred to my general practitioner when I was trying to find a plastic surgeon that would remove them because my oncologist office. You know, didn't want me to do it. And nor the breast surgeon that had initially operated on me. so, they referred me, um, to my general practitioner, where I just went in for, I don't even know what I was going in for, just to check up. And they were, basically they gave me a psychological evaluation, which I was completely shocked and astounded, and did not even realize what was happening until They left the room and I just, I didn't even have, and I didn't have a voice to even ask them or question them. I just walked out of the office, stunned, honestly. Um, and then I found, you know, a space, a space of anger thinking what is going on, but it did not deter me from my determination to get them out of my body. Um, so it's kind of like that, you know, advocacy for myself kicked in again, where I knew what was better for me and I was really going to stick with it. like when I was first diagnosed, but I had missed this on it. So. the right surgeon through a couple referrals and talked to him at length about wanting them out of my body. He did kind of consider if I had enough fat, you know, to kind of do the DIEP flap and all that stuff. He said, you do not have enough fat to do that and it would only give you at best a size A. I said, listen, I don't want that. It's not worth it for me at all. I don't want that surgery. I'm willing, you know, whatever it takes to be disfigured. And so he just agreed he would do the best he could and we left it at that. When I awoke, you know, it was astounding to me, I was a different person already. Um, it was astounding to me when I saw, you know, my scars for the first time. I have pictures of when I first saw them and the drains coming out of my body. And it was hard. I mean, I had been so defined by my breasts as a woman, you know, not only was it something that, you know, people considered me so, you know, voluptuous and beautiful with, I also, for me, what was the most difficult thing for me and part of my journey was the crying of losing my breasts when I went through it initially, because I nursed my girls, my children with them. So to me, it was a really hard letting go of something that was so important to me that nurtured my children. I was driving into my convertible car of all things. And the rain started pouring down and it was like, you know, kind of like, you know, the universe speaking to me and allowing me to grieve it fully. My nipples hardened at the time because it was chilly and it was rainy. And I started bawling even harder because I thought I'll never know what this experience is. experiences like again to feel you know, something that's so natural we don't even think about it about our nipples hardening for whatever reason. It was just really a huge grief process, and I still feel teary when I talk about it, because it was powerful. You know how important breasts are to our, our, you know, definition of ourselves sometimes as women for many reasons. So yeah, that was a big experience. But leaving after having a flat closure and seeing my, my scars for the first time, I kind of remember feeling this surprising sense of acceptance that I didn't expect to have. And again, I hadn't found the flat communities or anything like that. And I remember feeling powerful because my daughter was seeing me as a powerful woman still with no breasts. And she's a young, young adult woman at this time. And she had lived with me through breast cancer and it was very traumatic for her. And now as a young woman to see me make this other decision and to feel powerful as a woman still. And I felt like this power of this little girl that I once was who was never defined by breasts or anything when you're a little girl. You're just a little girl. You're just Anna. And I felt like just Anna again. I can't really put words to it still. It was so powerful and it kind of is what carried me through the challenges of the healing, you know, the lumps and bumps, the redness, you know, the things that you deal with, the taking of the drains out, all the things that are hard, like how do I dress? All those things. So yeah, it was super powerful. And yeah, then I remember thinking, gosh, I should, maybe I should go in and see what it's like to have a prosthetic. And I remember spending a few hours, the women were lovely. They showed me all these different shapes and sizes and all these things. And I thought, When I remember putting them on, I remember thinking, gosh, these feel so weird and awkward. And I feel like they didn't feel heavy, but I was like, everybody's going to know these aren't real breasts. It's interesting how your mind does these things. I wanted nothing to do with them, but I still took them home thinking, how could I ever feel comfortable in these? What if they fall out? What if they move? Like it was such a weird thing for me. And I also didn't feel comfortable walking around flat at the time. So it was really kind of, you know at home and healing and trying to find my place in the world now. K: Yeah. So I first encountered your body four years after you went flat. And I remember my first thoughts. So I was there when you...
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Burning Man - Big Medicine for Big Loss
09/11/2024
Burning Man - Big Medicine for Big Loss
This is a solo episode where I'm reflecting on my week at Burning Man--a place I wouldn't normally be drawn to except that it offers an exceptional way to be with loss and say goodbye. I would have never ended up at Burning Man this year if it weren't for the podcast project--the opportunity came up during the debrief of my podcast interview with my writing partner, Avena, whose son is connected to the burning man organizers and had let her know that this was the year to go. My youtube video shows a lot of the photos I took there of my mom's tribute in the temple, my shibari piece, my wacky and wild outfits and lots of other photos of the temple. It can be found on either my estrogendiaries youtube account, or the podcast youtube account under the same name as the podcast. Thanks for listening to my adventures here! Thanks for leaving a review and rating! Here's this same podcast with photos from Burning Man shown on YouTube: https://youtu.be/a6Oq4OxQYPs Find out more about Burning Man here: https://burningman.org/
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A Reflection on Self Advocacy for Young Survivors
08/28/2024
A Reflection on Self Advocacy for Young Survivors
This is a very short recap of stirred thoughts and feelings after talking to Miriam last week about her amazing self advocacy as a young breast cancer survivor with complicated hormonal needs. Catch this podcast on YouTube here: Support my work by making a donation here: Links: The Facebook group for Flatties that I mentioned is here: Transcript: Welcome back. Today, I'm just going to be recapping some of the topics that came up in the last interview, last week's podcast episode with my friend, Miriam Janove. Miriam is a young breast cancer survivor, just three and a half years out from her diagnosis. And she had a lot to say about a lot of subjects that are common for young survivors. The first one that came up was the idea of over diagnosis and over treatment for young survivors. As she had stated, she got a second opinion, not because of the concern over whether she was being over treated, but because she needed a surgeon that really knew how to do her surgery, but she ended up with a new oncology team who ended up treating her very differently than what her first oncology team told her they would. And that was because of her age. She was in her 30s. And it was pretty clear that her first oncology team had a bias that said that young survivors need chemo regardless of whether they have an oncotype test that says that they are low risk or high risk. Her second team of oncology professionals had a very different take and they really relied on her oncotyping to determine whether she would have chemo. And like so many of my guests, unexpectedly, she did not have chemo. It's so funny to me that I keep having guests that I assume have had chemo because you always assume folks in the breast cancer community, if you know them from this place--you assume it's pretty likely that they've had chemo, but it turns out that only, I think one of my guests so far has ended up having chemo. Some of them turned down chemo and others were told they didn't have to have chemo. So Miriam was one that was told very clearly that she was not even being asked to take chemo. So pretty rare, I think classically for young survivors, but more and more we are seeing people who are, Healthcare professionals relying on the oncotyping test to see whether or not they really need it. And so she was not overtreated. She was not given chemo when she didn't need it. Of course, we don't know. She's only three and a half years out. As she said, she's still, you know, somewhat at risk as we all are for recurrence or metastasis, regardless. But really nice that she didn't have to go through that particular hellish part of the breast cancer experience. Thank you. The other part of her young survivor story that came out was her desire to be around, um, multi generational people. So she wanted to be back with her parents. She wanted to be around younger children. Kind of a revisiting of her values and really placing family and friends and children, the children of her friends, over her career as a big priority. So that was a theme that I think is really very common among young survivors. We, a lot of us, think differently after breast cancer about what our ambitions really are serving and where our ambitions really lie. And I think Miriam's a really good example of that. A big part of Miriam's story that we didn't talk about because we didn't have time is her history of gynecological problems of hormone imbalance and dysfunction around her menstrual cycles. And she did refer to the fact that she had lost her ovaries. And I wanted to clarify because I think people probably wondered after hearing the last interview that she Miriam was not asked to give up her ovaries because of being treated for breast cancer specifically. She was asked to give up her hormone treatment, which she had had, pretty much her whole adult life because of menstrual dysfunction and hormone imbalance. And so she was on estrogen and progesterone, or otherwise known as birth control, not for the sake of birth control, but for the sake of managing her very difficult menstrual symptoms and after breast cancer, folks who are dependent on hormone treatment, hormone therapy for those kinds of symptoms have no choice but to give up their ovaries if those symptoms are extreme as hers were. And so she was not put on ovarian suppression. She was not offered ovarian suppression drugs and she did need to give up her ovaries. Regardless, because she was so dependent on hormone therapy. And so, I think just to reassure those listeners who are very concerned that they might have symptoms as extreme as Miriam's, which were, you know, extreme energy loss, extreme brain fog, and some pain, um, some bodily pain also. While those are common side effects of estrogen deprivation and endocrine therapy that comes for many of us after breast cancer in the form of tamoxifen or aromatase inhibitors. Her symptoms were actually more extreme because she also lost her ovaries. And at that young age, it's very difficult to lose your ovaries and to lose that supply of hormones that we're used to having at that stage in our lives. So I want to reassure people that even though tamoxifen can have extreme effects and really alter our lives and our lifestyles, it is not quite that extreme for most of us. And I think that personally, I think that Miriam's ovary loss had something to do with that as well. I'm sure she would agree with me if she were here to comment. Really interesting set of characteristics. I wanted to talk a little bit about the fact that she had to search for a different surgeon. Again, it's just so common to hear stories of these kind of contrasting first and second opinions, whether it be for surgical procedure or for breast cancer treatment. In Miriam's case, it was both. She was looking for someone with experience with flat closure, and she didn't find that on her first go round, and she had to look elsewhere, and thankfully she found it in her second try, the second healthcare system that she tried in her city. I happen to have also gotten my second mastectomy in Seattle, in her city, and I was at a third healthcare system at that time. So if you're in Seattle, two out of three healthcare systems that I know of are really good at flat closure. But I think, especially in smaller cities or towns, it is really hard to find a surgeon that does it well. And then if, like me, you're looking for a Goldilocks procedure, it's even harder to find surgeons with experience in that area. So, really good to hear Miriam talk about how she was reassured that she didn't need to be in a rush and that she could afford to take that time and look for the right practitioners. I love that part of her story. I think it's so important to tell because so many of us feel rushed. Even when we are reassured that we have time, we want to act as soon as possible. We don't want to wait. I personally would never have gone up to Seattle to seek a surgeon or even looked on Facebook for pictures of surgeries of Goldilocks if I hadn't found out that my first choice of surgeons had broken her foot and she was putting me off a couple of months for my surgery only because I was afforded those couple of months to look around, did I get choosy. And I just really want to reiterate what Miriam said is you have time to get choosy unless you have an aggressive. are fast growing cancer. Those are the terms that your doctor will probably use to refer to it if it is, you know, the kind of cancer you need to act on quickly. That type of cancer is pretty rare in breast cancer. So most of us do have time to look around and get a second opinion. And as Miriam mentioned, she got her education in terms of what to do practically on Facebook. And so many of us do. There's a huge, um, uh, vis, visual kind of support system on Instagram as well in terms of like looking at each other's bodies and each other's outcomes. I've loved connecting with people on Instagram even more than Facebook because Facebook can be so dicey, but Facebook is really the place to go. If you're looking for quick answers in a forum full of women that have been through what you're looking at going through. And both Miriam and I found those answers. Thankfully, I found a photograph of a woman who lived up in Seattle who had an outcome that I realized I was capable of having, that I could actually still have a small breast after a mastectomy without having an implant. And that's how I learned about Goldilocks, and that's how I found my surgeon for my second surgery/mastectomy. So, really important to know about these Facebook groups. I know that Miriam is on a number of the ones I'm on for flat closure. The main one is . That's where I found that photograph and there are so many Facebook groups for so many different issues and topics around breast cancer and breast health. So if you don't know about those and you're kind of in an urgent situation where you really need to find the resources, just pose a question there. You can even do so anonymously if you'd like to. So that's, there's that option now, and the groups tend to be private, and they have some screening that restricts outsiders, people outside the breast cancer community from getting in. So it's a pretty safe community. Now, if you want to state your opinion about going out in public without your shirt on, you're going to get some pushback in that community, because there's a lot of debate about whether that's respectful and appropriate socially. And, uh, and you might notice that the cover art for last week's episode was indeed me and Miriam with our shirts off. So, uh, the flat community is kind of famous for, for doing that in the context of a breast cancer walk and breast cancer awareness events. And that's, those are the times that Miriam and I, and those are the times that Miriam and I have done that. Just in that context of other breast cancer survivors. So, uh, we have, we have fun doing that. We're both kind of uniboobers. And so we both have, um, tend to use a one sided bra in those contexts. And actually she and I are planning to meet up at a breast cancer walk this weekend. The first one of the season here in the Northwest. She and I are both going to be tabling at, um, events in Seattle this year. We'll for Stantol AFC. We're starting to have tabling this year for the first time. So she'll be one of the other tablers in the two big walks in Seattle. So you can look for her there if you live in Seattle. And I just wanted to wrap it up real quick and leave it at that for this week. I am between vacations right now. I have a very luxurious August. I, I had a wonderful restful vacation at the coast last week. I'm doing a quilting retreat this week and next week I'm going to be at Burning Man. So. I am putting out the podcast on Wednesdays this month because they're a little bit delayed and that just gives me a few days to catch up. But um, I expect that my next episode will not be a guest interview as is the pattern, but rather will be a conversation about my experience with radical self expression in Burning Man. Uh, Burning Man has a tradition of um, celebrating impermanence. And the things that are changeful in life, including loss and death. And I, I have a need because my mom died of metastatic breast cancer a few months ago. I have a need to grieve her and pay more attention to my own grief. And I'm planning to do that there. But I'm also planning to be around other women who have lost their breasts and who have learned how to ritualize that experience and grieve that experience. Um, so I'm really, really looking forward to meeting other women, especially who are in the same position as I am, having lost my mom, having lost my breasts, having breast cancer as my main adversary this year and last year, um, and just doing some appropriate grieving because I think our, our culture just doesn't allow us to grieve appropriately. And I think probably my Instagram account will be the first place you'll be able to see me at Burning Man. I'll be taking pictures of myself and having others take pictures of me. Mostly, I won't be taking pictures of others very often because they have a policy against that, that I really support and believe in. So, it'll mostly be pictures of me at Burning Man. But I hope to take a lot of them and share them on Instagram. And probably one will be the cover art of my next episode here, which will be out a couple of Wednesdays from now. Um, and I will talk to you then take care.
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Young Breast Cancer Survivor and "Unicorn Breastie," Miriam Janove
08/21/2024
Young Breast Cancer Survivor and "Unicorn Breastie," Miriam Janove
My dear friend Miriam has a lot to say in this interview about work and breast cancer. She also makes a really good argument for getting a second opinion. Thank you for rating and reviewing the podcast! You can now watch on YouTube: Support my work by making a donation here:
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Reflecting on TRAM Flap and Self Blame
08/11/2024
Reflecting on TRAM Flap and Self Blame
There are some terms to define from the last episode, but mainly I want to talk more about the idea of self blame and "I must have done something wrong" raised by Avena last week. This is a topic worth discussion. Support the podcast here: Watch the podcast on Youtube here: Transcript: Today I'm doing another diary entry that's reflecting on my last interview. My last interview was with Avena Ward, my friend and writing partner, who had her first mastectomy 30 years ago. So she had some really old terms that I'm going to talk about today. The theme of the interview was following your intuition and self affirmation rather than self blame. But we also talked about some older kinds of procedures that I just want to talk about that are not really in use anymore, but you might hear about from friends that have had mastectomies in the past, and you might wonder about them because of that. So thought I would just define some terms as I usually do on the week after I have an interview, and then also talk about some of the general themes that came up. Avena just had so much great insight and wisdom and her sense of intuition is so spectacular. I just wanted to talk and reflect a little bit on that as well. So the first term that came up in the interview last Sunday with Avena was the term “radical mastectomy” and you don't hear about this happening anymore—it doesn't really happen anymore. I don't think I've ever heard of anyone in the last 10 or 20 years that's had one. What this means is they used to take not only your entire amount of breast tissue out, but also every single underarm lymph node. There are lymph nodes all over our body, so obviously I'm not taking every single lymph node, but the ones that are located under your arm, which is a very invasive surgery that ends up having a lot of symptoms and that's why they no longer do this procedure. But also part of your pectoral muscle or chest wall muscle is taken in a radical mastectomy. These days that still can happen. You still can have some scraping or removal of the pectoral muscle. I did myself because my DCIS had grown into the outer layers of my pectoral muscle. So that's not unusual. But that is not a radical mastectomy in itself. It has to include all three things, all the breast tissue, all the lymph nodes under the arm and the part of the pectoral muscle that is located under the breast. It's only a little less than half of the pectoral muscle that is located under the breast, but that is also removed in every instance with a radical mastectomy. And for that reason, yeah, we, we just don't see that being done anymore. Mostly because lymph node removal is very costly. in terms of quality of life and, uh, side effects of surgery, which in most cases is lymphadema. More, and more, and more, you see the science pointing towards less lymph node removal, really lessening that as much as possible. I was in San Antonio for the big breast cancer conference, research conference, this last December, and that was actually the biggest takeaway that most of us got, I think, was really lymph node removal is not going to benefit us if we can replace it with radiation. Because radiation does not result in as many long term side effects or quality of life issues like lymphadema. And with most surgeons techniques these days, the removal of lymph nodes more than one or two really does. It is very likely that folks will get long term lymphadema, and lymphadema is a really big hassle. You have to wear a sleeve in the summer when it's hot, your arm is always Um, I have a lot of friends with lymphadema and it doesn't go away. It's not something you can address with drugs or therapy. And so folks are in the medical community and research community are listening to patients when they say “it has not been worth it for me. I would have rather had more radiation.” And so that's what's happening now. We're changing still in this trend toward moving away from lymph node removal. Again, I'm not an expert. I'm just an advocate. I'm a well informed advocate, but your doctor is the expert. So do not take my advice here as medical advice. I am only trained in nutrition in terms of medical advice. So, go back to your doctor with this information and seek out their expertise on this if you can. And if you have questions, cause I'm not the one to ask, but it is really interesting to me that we're moving away from those more invasive types of mastectomy procedures. So, we do have something called a modified radical mastectomy these days, and that is taking less lymph nodes, but my guess is that even a modified radical mastectomy is on its way out based on what I saw in San Antonio this last December. The next concept that came up in my interview with Avena is a favorite of mine. She is a survivor of lobular cancer and lobular breast cancer is something that most women don't know about, even if they were diagnosed with it. Sometimes doctors don't tell them that they're diagnosed with it, number one, and most doctors don't fully understand it themselves because it has been drastically understudied and very, very seldomly separated from the other type of breast cancer that is more common, which is Ductal. And the two names of Ductal and Lobular are even being revisited these days in the scientific community. And that's kind of hot off the press. Only the people that are on the inside of Lobular Research really know that, so you're not going to hear your doctor affirming that probably, but because I am an active volunteer with the Lobular Breast Cancer Alliance, and I go to staff meetings, and I hear the latest news, that is something that has just come up in the last couple of months that Lobular was called Lobular because we used to think that it was located, the cancer was located in the lobules or that it started in the lobules, and ductal was called ductal because you thought it started in the ducts, but you can have Lobular breast cancer in the ducts and you can have ductal breast cancer in the lobules. So those are misnomers. They are mislabeled names that really probably should be replaced with a little bit more accurate names. The thing that makes lobular cancer itself and distinct from ductal is that it grows invisibly in a spiderweb like formation and not a lump or a tumor. So it is very hard to detect. And that's why I was shocked when Avena said that they actually detected it in her biopsy with Dr. Thurman. And I'm all the more impressed with Dr. Thurman's techniques because of that, because generally, you don't get, much of lobular in a biopsy unless it's really extensive, and Avena's wasn't very extensive. So, kind of surprising that they did catch it in the biopsy. I will talk a lot more about lobular breast cancer in the future because it deserves a couple hours of dedication and this is just a light summary of terms, but suffice it to say, there is a characteristic called E-cadherin. It is a genetic characteristic, not always an inherited generic characteristic, so not always something that we get from our mother or father or grandparents. Sometimes it's a mutation that happens. during our lifetime, just in us, and it is called E-cadherin. E-cadherin is the glue that sticks cancer cells together and makes them into a lump or a tumor, which turns out is a real blessing because we wouldn't detect cancer if it didn't stick together with that E-cadherin component and form a tumor, um, as often. So, lobular breast cancer is not detected as often as is the case in my own story. I did not know that I had lobular breast cancer until it was already out of my breast. And many, many women find that to be the case. A lot of times you're going in after ductal or DCIS. And as kind of a, a side effect of surgery, you see that you also have invasive lobular breast cancer in there, and it was invisible to all the scans. I had a PET scan, I had many MRIs, I had many ultrasounds and many mammograms, none of them picked up my lobular breast cancer. Albeit, it was a very small amount of lobular, I should say. If it gets quite large, then the scans will tend to pick it up, especially on an MRI. But there is new technology, a new PET technology in particular that will show a lobular growth—it's not a tumor, but a lobular lesion—will show up, um, on these new PET scans really well. So there is a new technology that we've seen getting developed and being tested and used in the scientific community. And it is just starting to be used in the clinical community now. So that's pretty exciting. I'll talk a lot more about lobular as we have more guests on that have that diagnosis. And I'll probably take a whole episode at some point just to talk about what we've learned. Because we have a lot that we're learning about lobular now that there is research that's dedicated just to it and not to the greater breast cancer community. I will say though that there is an event this year that you should know about if you have lobular or if you've had lobular or if you're interested in lobular, this year will be the first year that we will have an international lobular awareness day or lobular breast cancer awareness day. It's going to be on October 15th. And different states in the U. S. are in the process of approving it as a National Awareness Day. And we're going to have events all over the U. S. Here in Portland, Oregon, there's one at Providence Cancer Center in Northeast Portland, there's going to be an event at Sloan Kettering and MD Anderson and a number of other places there's, they're going to ring the bell at the Stock Exchange in Toronto that morning and proclaim it International Lobular Breast Cancer Awareness Day. So if you're interested in events, be sure and reach out to me and I'll let you know where the closest place near you to gather, get together either virtually or in person would be. And you can reach out to me at my email address, which is Kathleen Moss @protonmail. com. But moving on past the Lobular, I want to talk about the procedure that Avena had that is also a little bit less known these days or heard of these days, which is the TRAM flap procedure. Tram flap was one of the first kind of flap procedures that we saw used in plastic surgery setting to reform a breast or a breast like mound without using an interior prosthetic or implant. It is using, like Avena said very well, is using both skin and muscle, and it is an outdated procedure at this point. You don't hear people offer it to patients anymore, and that's because the simple fact that it, It tended to show a lot of hernias because the muscle was misplaced or displaced and realigned, um, up north of the abdomen. A lot of folks had hernias down where that muscle was supposed to be holding things in. And so we have something called DIEP flap or DI-EP flap as they say in the UK and Australia which is, uh, a really good replacement for TRAM Flap. It is not involving that abdominal muscle. It is just using skin and fat from the abdomen instead. So it's a similar procedure in that it uses skin and fat from the abdomen. It just doesn't use the muscle. And, uh, the words that are being stood for in the term DIEP Flap are deep as in D E E P, inferior epigastric perforator flap, which is just a way of saying the flap is, is kind of named for the abdominal blood vessel in that area. So it's just named after the blood vessel that travels through that area. And we will have guests on that have had a DIEP flap. I will say that my impression is at this point, and I'm not very experienced in this area, but my impression from talking to friends that have had a DIEP flap is that it is just as involved as a TRAM flap—it is many hours long, um, and maybe a day or two recovery in the hospital afterwards. So it is not a light procedure by any means. It's not as easy as having an implant. or going flat. So that is kind of a light definition of TRAM versus DIEP. You'll hear the DIEP term these days where you would have heard the TRAM flap before DIEP came along. Another term that Avena talked about was myofacial massage, and I think Avena did this term justice and talked about It's just a light form of massage that you can learn to do on yourself or you can go to a professional to do it on you. This is something like many other things in the breast cancer therapy world. It's kind of an elite offering. So if you go into the average breast cancer clinic and you say, I want myofascial massage, it's kind of like saying I want a nutritionist to help me with my breast cancer recovery and resistance to recurrence. They'll look at you like, “um, sorry, we don't offer that. That's a little beyond what we do here. We're just keeping people alive.” And really, I think the alternative/integrative community of medical professionals does this kind of work a lot better. Because after all, the conventional medical system is really just there to keep people alive. That's what they do best. And that's what they're doing when they do your mastectomy refer you to get your special bras or prosthetics afterwards. They're doing the bare minimum to keep you alive. You really have to go to the kind of alternative, or integrative, which is the term that I prefer to use or the community that I prefer to associate with myself to get these special, really deeply healing therapies like myofascial massage. And most of us need those. Most of us need more than. You know, a wig for when we have chemo and the cold caps and things like that to reduce the, the nerve inflammation, most of us need recovery help and we don't get it. And I just want to acknowledge that's kind of an elite thing. That you have to have a lot of money or really good health insurance in order to be offered. And you kind of need to know how to seek it out too. So you might need to call around. I found out about my excellent massage and physical therapist by going to my local breast cancer support group. And that's kind of one of the best things I learned from that support group. So you'll learn from other patients and these days that's happening a lot on Facebook groups based on the kind of breast cancer that you had, whether it's lobular, ductal, or whether you went flat or had implants, you'll, you'll probably find a Facebook group that is matching the description of your experience and no matter what that is based on, you will find really good advice there, especially if it's a local group on where to go for things like myofascial massage and nutrition and acupuncture and physical therapy, even a lot of patients don't even know that they're eligible for physical therapy after mastectomy and that they might need it to keep their tissue loose and not get all bound up with scar tissue, but it's really essential. In my opinion, it's one of the most essential things. So, myofascial massage is another thing that is, I guess, kind of a luxury, but also semi essential just in terms of not having pain and not having irritation on into the later years after a mastectomy. Now, getting into some of the more esoteric topics of discussion in Avina's interview, I just love that she touched on the concept of: “What did I do wrong” and the solution to that, having a community of other loving women around you to affirm, “I did nothing wrong.” That is one of the most powerful things that we can talk about in the breast cancer community. During breast cancer recovery is how much do you blame yourself? What do you think you did wrong? We all think we did something wrong. I mean, it's just natural, right? You kind of have to admit that before you can move on. But having other women around you that love themselves and either have forgiven themselves for what they think they did wrong, Or have talked themselves out of the fact that they did anything wrong, based on their beliefs. That is the most healing thing psychologically that I've encountered myself. And I love that Avena brought it up in this way, that the first time she had a mastectomy, she was alone. She had no one to tell her, you did nothing wrong. She had no one to witness, you did nothing wrong. She went away with the impression, “I must have done something wrong. After all, I was in La Leche. I learned that if you breastfeed, you are safe from having breast cancer. It must have been something I did wrong because I did that right and that was a pretty major thing.” She was alone with those thoughts. And she points out that not being alone is a key way to get over those thoughts. And I just have to repeat that over and over, shout it from the mountaintops. Do not be alone in this journey of recovery. Find others who have gotten past that self blame stage. And I see this all the time being a nutritionist. People are either clinging to me for what they can do right from now on, because they believe that what they ate was what they did wrong, or they run from me because I'm such a trigger, reminding them of what they did wrong, which was put a certain kind of food in their mouth, which in my opinion is totally false. You don't get cancer from putting a certain food in your mouth and you don't grow cancer from putting a certain food in your mouth. It's much bigger than that. Now it can play a role. It can have some influence in your momentum toward health to have a healthy diet for sure. And there are toxins, there are carcinogens in our foods. But that is not the only factor and it's not the main factor as far as science knows right now. And science is pretty advanced right now. So if you feel like it was you eating certain things that caused your cancer to grow or caused it in the first place, please be around other women that don't believe that belief. Find other women that maybe have thought that in the past and have come away from that belief. Or make an appointment with me because I can tell you with scientific research, with solid, solid research, that that is just not true. Now, stress is a huge factor. That's a big one. Exercise is probably the most scientifically founded belief in terms of like if you were a couch potato for the 10 years or 20 years before you got cancer. You know, you might be able to forgive yourself for that because there is some research that that could move the needle. Chances are it's not anything that you did wrong. Cancer finds us total involuntary methods. It comes into our lives in ways that we cannot see or prevent in almost every case. And then the things that grow cancer are multifaceted. So many different things, so many different viral infections that can get involved in autoimmunity that you might not know that you have and might not be able to know that you have. Heavy metal poisoning, you know, the list is endless. Nutrition and exercise and sleep, stress reduction, those are all part of it, but they all go together. There's not one that stands out as the single factor. And we're all doing the best we can, right? Like, we know about stress, and we know how to reduce it. We're all doing the best we can to reduce it. And we learn new techniques. And that's all you can do. So forgiving yourself for what you have done that was a little lazy, maybe, but also being around other women who are perfectly imperfect, just like you, who still love themselves and have forgiven themselves for whatever little bits of things they could have controlled. It's huge, huge. I can't say it enough. And then at the end of my conversation with Avena, we talked about the difference between a private clinic and a hospital imaging center and the kind of treatment that you get there both physically and just in terms of the quality of the machines, maybe, and spiritually in terms of how much the staff is overworked and underpaid and distracted, burned out, really, I mean, it's very, very likely that most of our hospital staff these days, especially after COVID is a little...
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Claim your Power, With Guest Avena Ward
08/04/2024
Claim your Power, With Guest Avena Ward
My friend Avena had never told me her breast cancer story before this interview, so I'm hearing it fresh right along with you, and of course, her insights blew me away. Transcript: K: Today's guest is my friend, Avena Ward. She has been in my life just a short time, and she's been a writing partner to me, mostly online. We met each other through a local writers group called Willamette Writers here in Northwest Oregon. Avena lives in Portland, and she is a two time breast cancer survivor with a long history of dealing with thoughts about breast cancer and recovery from breast cancer. She had a long space in between her two diagnoses. Her second breast cancer occurrence was a second primary breast cancer occurrence in the contra-lateral breast. she has an interesting story to tell, and I'm so glad to have her here with me today. A: Thank you, Kathleen, for inviting me. I'm, uh, I'm anxious to share my story with, uh, other, others who are approaching this for the first time. K: So one of the questions that I wanted to ask you about your story is, is there anything that surprised you early on, especially around your first diagnosis? You were 42 years old, this was a few decades ago, so quite a while back, but what surprised you most at that time when you learned about your diagnosis? A: I think the fact that I had cancer at all surprised me the most. At 42, um, I had been debating whether to have a, a first mammogram, but I had breastfed both of my children for extended periods of time, uh, my daughter for two years and my son for 14 months. I had been a card carrying La Leche League member and we talked a lot about how breastfeeding confers some resistance to breast cancer. So I just was shocked when one day in the shower, I put my hand on my breast and felt a lump. Uh, and so it took me a very long time to even bring that to the attention of a doctor. K: How long? A: I think I found the lump in April and I didn't have imaging of it until July, and then I had a biopsy in August, so it was several months. K: How did you deal with the diagnosis itself? A: Again, just shock. And, um, my mother had recently died of lung cancer, not breast cancer, but nine months before my surgery, mom had passed away. And I had experienced a period of, a long period of deep grief after losing her at the age of 63. And so I was just coming out of the grief darkness when I found my lump. And, I found that my family didn't have a lot of capacity for handling the shock either. K: Hmm. Did you take your time deciding what to do and who to let guide you down this path or was it a quick process? A: I took my sweet time, yes, deciding what to do. And I guess it surprised me too, that I found in myself some really strong opinions about how I would proceed. And so part of that process was interviewing various surgeons. And at the time then the internet wasn't what it is now. You couldn't just go and type in breast cancer and get a whole bunch of information. But I went to the bookstore and I got Dr. Susan Love's breast book. And several other books on cancer, and read those, while I was interviewing these three surgeons. And then, I think, I was surprised about how I felt that I wanted to be led to the solution in a sort of spiritual way, rather than necessarily by data. So, I took a sail out on Lake Michigan at the time with the last book, and when I closed the page, I allowed myself to be in meditation. And that's when the treatment path that I wanted to choose came to me. So actually, when I was visiting those surgeons, I already knew what I wanted to have happen. K: And, can you describe what that was? A: Yes, I had decided that even though my cancer was stage one, that I did not want to have chemo or radiation. And so, the solution was a mastectomy—a radical mastectomy, and when I went to the surgeons with that solution, no one argued with me. I was surprised—my family argued with me, but my, but my surgeon said, “no, I think that's a good idea.” K: Yes, and radical mastectomy is not something we see very much anymore. That includes all of the lymph nodes? A: Exactly. K: Do you think that taking all the lymph nodes is what made them feel most comfortable with not doing chemo? A: I think so. I think so. Yes. And of the three surgeons I interviewed, the third one was the oldest and had been doing breast mastectomies for the longest time. And he did the lymph node dissection as well, and said to me, “you will live to be an old grandma.” So I took his prophecy to heart! K: Was that here in the Portland area? A: All of this was in Chicago. He was a surgeon at Rush Pres St. Luke's Hospital. K: So talk a little bit more about the stress that you were under from losing your mom and how you feel that's connected with, if it is connected with your diagnosis and the progression of your cancer. A: Yeah. There is something about grief that’s like being a drowning person and being taken under, I felt like I had been taken under by the grief of losing my mom at such a, a pivotal time in my mothering and in her life. She was 63. My parents had just retired. She loved life and she loved her grand-kids and I was looking forward to my children knowing my mother. And so there was this huge betrayal. A betrayal. You know, life is not fair. And my kids were six and ten when my mom died. And since, since that time and in my career as a pastor, I've met several women whose breast cancer diagnosis came on the heels of the death of their mothers. So there is something pretty significant to losing that primary connection of nurturing and then having something occur with the organs of our body that nurture. K: Yeah. So tell me about the second occurrence. How much later was that and what did that look like? A: After my surgery the first time, within a year or two, I was able to kind of put that in the background and live life fully. Uh, I mentioned ministry—the occurrence of the first cancer really also evoked in me a desire to change careers. So I chose ministry and went to seminary after the first occurrence, and I had a wonderful career of 20 years plus in ministry. And then I had retired in 2017 and moved to be near my daughter who had moved from Chicago to Portland. So, we relocated, and my daughter was a midwife in Portland, and so when I was establishing my care with doctors and, uh, other practitioners in the area, I relied on her to refer me to people. Before I left Chicago, I had had some interesting symptoms in that remaining breast. I had had some discharge from my nipple—clear, fluid, no pain, no blood. My primary care back then had cultured it. She had had me have the mammogram, the ultrasound, and eventually the MRI, none of which was conclusive for anything. So I arrived in Portland with this sort of lingering thing in the background, and my daughter, the midwife, said, mom, if I'm gonna refer you to anybody, I'm gonna send you to Amy Thurman. She's the most thorough imaging specialist in the Portland area. K: I know her too! That's, that's crazy because I was just thinking about her today. A: Yeah? And so I went to Amy's office and had my first mammogram and I expected to just skip away and they said, “um, we think you ought to come back and have an ultrasound.” So I said, "well, it's almost Thanksgiving. I think I'll go and do Thanksgiving things and come back." And I came back and the ultrasound was, “hmm, I think you better have a biopsy.” And every time I'm thinking to myself, okay, I can deal with this. And Dr. Thurman is incredibly thorough. So when she was doing the biopsy of the one spot that they had seen, With the ultrasound she said, “oh, there's another spot there and there's another spot there, so I'm gonna biopsy all of those,” and sure enough, there was a field of stage 1-B--both ductal and lobular. K: Oh! So lobular showed up that early—in the biopsy? A: Yes. Yes, K: Wow. A: Mm hmm. So, again I went into myself—I did consult with my Ob-GYN who said, “you know, we want you to get this taken care of and we'll give you as much support as you like.” And I said “I like to interview surgeons” and she said “fine, I'll give you the names of several” and so I was very supported by that. Dr. Thurman called me, my Ob-GYN kept calling me just to make sure I was okay, but I was doing my discernment process and I chose, again, to have a mastectomy. This time just with the sentinel node biopsy. And I interviewed a couple of surgeons, brought my daughter along, and my husband along to the appointments. And I chose the one who cried with us. Again, I think I let my heart lead. They both seemed like very competent surgeons. Lots of great experience. Wonderfully knowledgeable. But the one who cried with us is the one I went with. K: Beautiful. So I want to hear about the different procedures that you had—how did your body look after the first surgery, and then how does your body look now? A: The first surgery I went with I found, of course, the surgeon I wanted to work with. And he said to me, “Have you heard that you could have reconstruction?” And I said, “Of course I have, but I don't, I don't want anything foreign in my body.” And he said, “Oh, well, do you know about TRAM flap?” I'm like, “What's that?” And he said, “Oh, I have a plastic surgeon I work with who does wonderful work with TRAM flap. I'll introduce you to him and he can tell you more about it.” In the meantime, I, I did my reading on it. TRAM is short for transabdominal, abdominus recti-something. The M, I don't remember. And “FLAP” is that they take a piece of skin from your abdomen and graft it into the surgical site where they've removed the breast tissue. And so, it sounded perfect. They're using my body tissues. My abdominus recti which are the two long muscles that connect from your ribs down to your pubic bone. They are detached and moved under the skin up to a point in your pectoralis muscle. And they become the blood supply for then fat and skin that are grafted from your abdomen. And they explained to me, because they were removing the abdominus recti, which kind of hold in your belly stuff, that they would put a piece of mesh across my abdomen at the same time, that this would be major surgery. It would be done at the time of the mastectomy and then it would be about six hours of surgery, but they felt at my age and physical condition that I was a good candidate for that. And it so happened, the day they were performing the surgery on me, the mastectomy team came in and did their work, but the people who were supposed to do all the TRAM flap work were, residents and they were called away to a serious accident. And so they left me on the operating table, open, while they took care of what they needed to take care of. And then came and operated on me later. So I was under anesthesia for 10 hours and no one informed my husband. And so he was a basket case. And having understood that I'd be under for maybe five or six hours, uh, he just did not know what was happening. And that also required a five day hospital stay back then, so that they could assess how the grafts were doing and make sure I didn't develop any infections. Pretty heavy duty, uh, surgery. Not, not something to wink at. I don't think I had gotten the full impact of what that would be. The recovery was very painful because of the amount of movement of things in my abdomen and then about six months after the graft was firmly in place, I went back for a procedure to try and create a little nipple on the grafted skin that formed the breast platform. And then they tattooed an areola on that. It hasn't worked, that tattoo. It's faded on me twice. I've had it tattooed twice. It just fades. So, but I was very happy in spite of the long recovery from that—I was very happy with the result and lived a very comfortable life, comfortable in my body, able to wear bathing suits and I even developed the ability to do sit ups after they had taken my abdominus recti, for the 25 years that I lived with that. The second time around, I had the assessment again, but well, I had heard perhaps they could take tissue from my gluteus, my butt area and rebuild. But as the doctors described it, there was way too much uncertainty about whether they would be able to harvest enough tissue to match the previous reconstruction. And as I listened, I said, “you know what? I can live with a flat chest and a prosthesis, thank you.” So that is how I live now. I have the reconstructed breast, and I have a chest wall, and a nice silicone prosthesis that works most of the year. It's pretty hot in the summer, but most of the year it's great. K: How are the scars on your body after the TRAM flap procedure? Where are they? A: Thank you. Thank you for asking. Of course, because they're harvesting a lot of stuff from the abdomen, I have a big smile on my lower abdomen—actually had to have my belly button re-rerouted. So they, they took the tissue from where my belly button originally attaches in the abdominus area and punched a new hole for the belly button to come out. So there's the smile and the belly button. And then, on the breast itself, imagine an almond shape or an eye shaped incision with a graft of skin in there that came from my lower belly. Now, I had a lot of, uh, scarring from having babies on my lower belly. So now I have that tissue on my, on my breast. So it isn't perfect. It is by no means perfect. I don't think anyone looking at me naked would think that it's, that it's a real breast. But it has functioned as such under clothes for a long time. K: Were you pretty happy with it after you had the TRAM? A: Absolutely. Absolutely. Very happy with it. K: So the skin showing on the outside where they created the nipple, that is skin that was transplanted A: Yes. Yes. Um, after that surgery, about two, three months after the surgery, my doctor suggested, and I found a person who did myofacial massage. And they did a lot of work around the scar areas on the breast tissue, which was very helpful in getting back feeling. I actually can feel touch on the grafted skin. And she did a lot of work under my arm, where all the lymph nodes were removed as well. Because that can leave a lot of numbness, even painful, stretchy, stretchy fascia underneath there. So I would highly recommend to anyone to have some special massage after you have surgery cause I think it really helps restore feeling to the body. K: Was that a physical therapist? A: The person I saw was not a trained physical therapist. She was a myofacial massage specialist, but a physical therapist will do that. I know at Providence, where I had my surgery here, they have some people in their massage department, for cancer patients. I started to see someone after the second surgery, but then COVID locked everything down and I didn't have that opportunity. K: Do you have feeling in most of the tissue nowadays? Do you have your, your nerves grown back or is it still somewhat numb? A: And on the original. Yes, I still have feeling it's, it's quite functional. And on the new surgery side, there's still some, I have done my own kind of massage along the scar lines, to, to restore, to restore feeling, and it's been what, three years now? Almost four years. So, I feel pretty good in that area. K: And how do you feel the experience of being a young breast cancer survivor affected your vocation as a pastor and a mentor, spiritual mentor? A: Thank you… Huh, let's see. Lots of, there are lots of little areas I would point to where that was, where the experience of having cancer so young really was helpful to me. I, there were several members of my congregation, younger women, who were diagnosed and I think I was able to be with them very comfortably. During that process and to help them to claim their power, the power of choice about treatment and the power to choose life. I think a diagnosis at such a young age and where it came in my life after this period of depression could have really sent me back into, uh, into a dark place. But I think my spiritual life and my, also I had a woman pastor at the time and she was there with me, and a women's spiritual group. Uh, all of those things for support were really, really important, claiming parts of my spiritual tradition, to be able to lament and be angry and as well as hopeful and hopeful and happy. All those things were there and it was really important. K: Your kids were at the age where they're verbal but not as body-self-conscious as like a tween would be. Do you feel—I mean it's never a good thing for a child to have to experience their parent in a trauma state—but do you feel like it was something that taught them something about you and something about life and was there some good came out of it for them? A: That's a great question. My daughter is now 37 years old and she was six and seven during this ordeal with losing my mother and then with the breast cancer. It's very interesting, when I came home from the hospital after this major surgery I had several drain tubes still in my body tissues and I would dump them out in the sink and she wanted to watch that. She wanted to be part of that--help me with that. I think it helped to contribute to her vocational choice to be a medical practitioner. She is a midwife now. But there was another aspect of it that wasn't so great. And that was that she developed a fear at a very deep level, a nonverbal level, that she would lose her mother. Because here I had been through this grief over losing my mother, and then I had cancer and this major surgery. And, and it was, it was not verbal for her. And she only really uncovered it after I retired, moved out to Portland to be near her, and she was trying to get pregnant, and it wasn't happening. And she finally, through the help of some spiritual counselors, uncovered this deep fear that becoming a mother is connected to loss. And, after she was able to bring that to the surface, she was able to get pregnant and now has two children. Boy, that was a very deep and long process. K: Sure. And then she was able to help you identify the source of your disease in the end. That's amazing. She was able to lead you to that wise practitioner who could see more deeply and take more time, look more thoroughly. Do you feel like she gives herself a little credit for that in the end? A: I think she does. You know, she, she feels a little ambivalent because she would love not to have had to do that. But yes, I think she has been able to touch into the part of her that is a healer herself and to be with other women in ways that I think are much deeper than than just a midwife who catches a baby. K: I want to go back to a couple of the wise women that you've mentioned—Dr. Susan Love and her immense book on breast health—are there any memorable bits and pieces of that book that are still with you that you want to mention just to inspire others to go and get that book? A: I just think at the time, it was so helpful to have the possible treatments and survival statistics laid out in that book. That was so helpful to me because I think the first time you hear cancer, you hear, “Oh, I'm going to die.” And obviously we all are, at some point, but there can be lots and lots of life between a cancer diagnosis and death. And so I thought that was very helpful to see that breast cancer is not a death, a death notice. And to see lots of—lots of different options laid out in her book. Those were the things I remember most. K: The other wise woman that I'm thinking of, I don't want to skip over the opportunity to ask about the contrast in spirit--since...
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