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.

'cause I knew it was a big and it, it was a big procedure, so...

K:

So what were some of the ways that it was a big, a big deal?

H:

The LAT flap. So muscle from the back come, come around to the front on the left side and then just expansion on the right.

Um. It just, it was painful and I think the results were okay. When you look down and I have a shirt on, it looks like I have breasts, but nothing more. I mean, I had said to my husband a long time ago, like, please just don't even, don't pretend to like them. Don't pretend like it just doesn't. That's that part of my body is gone. is a different or something.

K:

Were you more comfortable with the flatness being touched or?

H:

No, I didn't feel like I, again, I don't know if I gave that enough time over now that it'd be many, many, many years. I think it always felt very tender to me. Um, but um, yeah, I. I was just surprised by all of that. And also there's no talk about it, right? When we're, when those things are happening, it's all very much like, "oh, but we can do a reconstruction and you'll look just like this and you can choose what size you wanna be."

K:

And it's all like, a positive thing.

H:

And it, but it, there's no talk about the fact that, you know, it won't feel the same and your body won't interpret it the same. So.

K:

So you have 23 years. Did you get, so you got a lat flap you said on one side, and then did you get an implant on the other side?

H:

I have implants on both, on both sides--the LAT, the pocket on the left side with a LAT Flap.

K:

Oh, okay. So have you in all of your years, had a replacement of the implants?

H:

I did. I had 'em replaced a couple of years ago.

K:

Oh, good. Okay. And had they broken down at all in in that long time? No. They haven't.

K:

So you made it 20 years without them breaking down, it sounds like.

H:

Yeah. And the the side without the lat flap had kind of fallen a little bit. Like it was just a little bit lower. Um, but it was still fine. I do have saline implants also. I didn't do silicone, same as the new ones or the first time around.

K:

Oh, okay. Okay. So saline maybe are longer lasting than silicone.

H:

I don't know it so many things, you know, things come and go, but there was talk, a lot of talk about silicone implants at the time that I first did the surgery, and I want to be even having to consider whether or not it was safe or whatever. And so I did saline.

K:

All right. And then you said the younger children, I mean, sounds like you're still pretty protective of your, your breast, your chest area after getting reconstruction. But did it change your relationship with your kids or did that, did that have the desired effect?

H:

Um, I dunno if I've ever really thought about that. I think it's, I. The reconstruction had the desired effect of, I, yeah, I don't know in terms of, it made me able to do the things I wanted to do, I guess, and not have to consider necessarily. I. Clothing choices in the same way. There is some of that too, and again, I feel so old saying this, but like, you know, clothing changes and at times it's more fitted and at times it's not. And, it might've been all of those things, but...

K:

Well, and you were 26 when this first happened to you, and now you know, you and I are the same age, and I, I mean, looking at your story, from my perspective, I've just now given up my breasts after having them for, you know. 40 years or whatever, and you were just getting into the place where, as a woman, we become comfortable in our bodies for the first time.

H:

I didn't, and again, I just didn't even understand that, like the pleasure that I did get from them in a sexual encounter or any of that kinda stuff. I didn't, I, of that was talked about. You know, wouldn't have changed, uh, the protocol at the time. I, I do understand. Or I, I am, I guess in some ways glad that there is some preservation of breast. I just don't think that it's very easy for women to recognize why, you know what I mean? I also understand the, initial urge of get 'em, get it out, get it out, you know, kind of

K:

So it sounds like you're supportive of our current standard of care, which says women need to keep their breasts if they're de novo.

H:

Well, I think I recognize. Uh, probably where some of that came from. I also, in speaking for women who are stage four, do want them to feel like they have access to the highest level of care so hoping and assuming that the research has been done that really, by preserving breasts, it's not changing outcomes.

K:

Yeah. Yeah, it seems a little bit illogical. I was talking to Leslie, another podcast, uh, guest about this who's, who's lived quite a few years also past metastatic diagnosis, and it does make sense to me that you would think that the scans were less. Likely to catch something if you have all this breast tissue, especially if it's dense breast tissue.

Um, but I guess the thinking is that you're gonna catch it if it's systemic, you're gonna catch it growing in multiple places on the scans, even if you didn't catch it in the breast. Um, there, there are other ways to catch it in other places, but yeah, it does seem like you're kind of living with the enemy still when you have the breasts still.

H:

that's a great way to put it. Yeah.

K:

And you were married when you were first diagnosed? Yeah.

H:

I mean, again, some of that is like, thank God for like getting married young and you know, we talk about, my daughter was 14 months old when we, when I was diagnosed and like, she's 27 now. So, and I just, you know, we kind of. Looked at each other one day and said, oh, I guess, I guess we could have kids and we got pregnant, and I wouldn't have her without that.

You know what I mean? It's one of those things that you just go, I guess thank God for again, just kind of not really always thinking things completely through.

K:

So did, were you aware of when you became infertile? Like was it really clear to you because of the chemotherapy that you lost your fertility?

H:

Um, well I had a two sentence, maybe three sentence conversation with my oncologist, which was, um. My mom was in the room with me and my doctor asked were, um, you, you know, she's like, I know you have a daughter. Were you planning to have more kids? And I just kinda looked at her and my mom kind her finished and said, you were planning to have more kids?

And I said, yeah. And she goes, that won't happen.

K:

Did she explain why?

H:

Because of the chemotherapy, they were doing. Yeah. And I never had another period after. I mean that, so I've been, that's now being 26 years out. I mean, it's really for me, I've been in menopause for 26 years. I'm 52

Yep.

and there's so much talk. About menopause right now and HRT and all these things that are great and things that I'm fine with, but I'm like, what about for those of us who don't have access? Like I, the thing I'm wondering at this point is how do I preserve my body that has been in menopause for 26 years? That usually, you know, is how many years of a woman's life that they're in menopause. Like, I need to double that. So what are the, you know. Answers for me and what should I be focused on in terms of menopause? So.

K:

Have you come up with anything?

H:

No, I, not really. I mean, of course just general health and lifting and, you know know those basic things, but I would, I actually have been kind of thinking about, I need to some research about finding, maybe finding a doctor who will speak to menopause, um, in, you know, women you know, that have had cancer because, um, while I'm excited to. Find out and hear that the HRT trials were completely botched and whatever ago, and that HRT is something that is accessible for women and maybe a great thing, it's not accessible for me. Right. And for for many people. So like, what are the other answers?

And you know, I think because we're, we can't replace estrogen and progesterone, we can't do that. So like. How do, how do we our body going?

K:

Yeah, I know a lot of breast cancer survivors are taking vaginal estrogen because there's a, a bunch of research that proves that it doesn't go into the whole system. It doesn't act system systemically. Um. But yeah, otherwise we're not allowed to take HRT.

Hopefully we'll get more workarounds besides just the vaginal application.

Yeah, and I've used some of those in the past too, and it's not been a struggle for me, um, recently, you know, but yeah, the access is just not same.

K:

Yeah. You're pretty open about your marriage and your family and your podcast, so I feel a little bit more free to ask you about that. So, um, when your, your husband learned about the infertility and chemo link, did you have a time of grieving? Did you, were you, were you able to process that together back then, or more recently?

H:

I think it, early on it was really just survival. Like we didn't have time to process it. I think it's, it's weird how it shows up for me. Um, definitely have grieved. Uh, not having, um, not being able to have more children biologically. And it comes out in weird ways. Um, in fact, even just probably less than a month ago, I was in a work situation with colleagues that I really liked, all women that were talking about how many children they had and they planned to have and da, da da, da da. And it was just that, that talk that. bothered me when I was in my twenties and even now, to hear people talk about pregnancy as if it's completely always gonna happen and go perfectly well, uh, is really hard for me. And I actually walked out of this conversation, I said, and these are the conversations I leave, and I left. they were like, oh, I'm so sorry. And I was like, no, you're, you are welcome to have those conversations. But that's just. Again, living took priority over everything. And there, there were losses, right? There's

K:

Yeah. Yeah. There's piles of losses right then in that beginning session. Right. Like too much to process, I imagine.

Yeah. And you had an adoptive child before you were diagnosed.

H:

No, afterwards.

K:

Oh, after, so I thought you had said you had kids. Okay. So Right. Was it really soon after. Okay. Soon after.

K:

Okay. So when you were talking about your sternum and that being sensitive, it was because you had adopted him pretty quickly.

H:

He came home, he was 18 months old when he came home, but we did, he came home in 2002 and I was diagnosed the end of 1998, so yes.

K:

Okay, so did your adoption process go pretty smoothly?

H:

Um, I would say yes. Um, I don't know much about adoption and how it's changed over the years. Um, I, I had kind of, I found something that was, I was able to apply to a bunch of agencies and say, would you work with somebody in my situation? And I had an agency reach back out to me and say Yes. and from that. Side of things. It went great. Um, international adoption, I think there's always challenges and like our process literally took 18 months and nine 11 happened in the middle of it. You never know, know, what's gonna come about, you know, we're, it's been an amazing thing, the whole, the whole process.

K:

Right, of course. So you did an international adoption, it sounds like, and then what was the questioning like about the fact that you had a metastatic diagnosis? Like, did people really know what that meant, do you think?

H:

I don't think so. I mean, I'll be honest, I think, um, we got letters from a couple of doctors that said that I was stable at the time and, you know, um, definitely that my husband was very healthy and that type of situation. And I, I think I. It? Yes. People's. Um, I, it might be different now. I think metastatic breast cancer is a little more understood now than it was then.

K:

Yeah, I think it's pretty much assumed that a young woman who's gone through even non-metastatic cancer and has become infertile is a little bit of a risky bet you know, in terms of, of adoption. So it's remarkable that your story is here for us. Like, I think that it tells us that women should try, I mean, it's heartbreaking to try and fail, but it's, it's still possible perhaps, especially if you're married.

other thing is like, you know, life is risky also. I get it. That, you know, the diagnosis. Is something that you can just brush off. when I think about, um, wanting to build homes, they're, you know, and, and have children. It's for a lot of reasons. And, and I always, like, I always fall back on the fact that without me, my husband is a really good dad. And that's, and that's important.

K:

Yeah. I love to see you and your husband on the screen, and it's like every single episode you have, it's like he's never not there. And I'm always blown away by that. There are a few instances where I've seen other breast cancer advocates in this community, and their husband is always with them, but it that is pretty rare.

And he's not like an effeminate guy. He's a pretty guy's guy. Like he's a, he's a very masculine man.

H:

Well, it's funny too that you say that because like he is, he's so supportive of me, but we're also very supportive of each other's things, right? So like, yeah. It's not like we're together 24/7 by any means, and you know, he's, yeah, he's all of those things. A coach, a football official, a all, all of that.

K:

He's by your side while you're telling this horrendous to, to most men, it would be a heartbreaking story to be there next to, and listening to, and certainly to my husband, who is also a very, you know, masculine man. Um, they don't like to relive it a lot of times, and so I'm just so impressed with him, and yet I can see a little bit of, you know, the tender, tender side of him when he's talking to you about these things.

He's a very gentle guy too, so. Yeah. So do, do you and he talk to people outside of your living room? Like I know you're, you're kind of in your little cloistered space when you're doing the podcast, but do you do speaking gigs together and does he travel with you when you speak?

H:

No, I usually speak on my own. Sometimes, we'll, I mean, we'll take any opportunity to speak together about our situation. That's not a, not that. We aren't willing to do that. It's just the most part when I'm speaking, it's generally on my own. Um, he can come with me, great. I actually have also gotten involved with Little Pink Houses of Hope, which is a organization that provides, vacations for women with breast cancer or people with breast cancer. Um, and when I go and I see the dads or the partners in these situations, I always think, oh, I wish he was here. And, and that's the goal too, is that he will at some point be able to kind of join me because I think the, you know, the partner support is, there's a whole nother, set of things you have to deal with there, right. It's, it is important to talk about.

K:

I wanted to ask you about your daughter as well. So you have a biological daughter, Sydney, and she is certainly, you know, at significant risk for breast cancer. And, um, I wanted to to have you tell a little bit of her story if you're willing to.

H:

I will say like. So Sydney has lived her almost her entire life with, with cancer, and we've, it's always been a part of who we are as a family. It's never been something that she's been, particularly scared about or, anything like that. It's, it's just been a part of our lives. she. and I, I should say too, I did, I have done genetic testing a couple of times.

I don't carry any markers for any, which is a little reassuring as a parent, I guess. Right. You hope that, you know, a, it's a fluke of how I have it, but it doesn't necessarily mean that she will get it. That being said, she's been in a high risk clinic since she was 18, which is they, they do have them, um. There. I don't know how many places have them, but we live in Michigan. She's been a part of the University of Michigan's clinic. and it provides a whole lot of reassurance for both of us, just that she has been getting these baseline, not just mammograms, but breast MRIs, you know, since, so for nine years now.

K:

How often does she get MRIs?

H:

I believe once a year. Uh, you know, she's a typical 20-year-old where she's moved to Chicago and come back. So, um, I don't know that they've all happened in that amount of time.

K:

Okay. So because you were diagnosed so young and because you had such a severe case of breast cancer, she qualifies for intensive screening, is that something they would've given her a choice to opt out of or were they really pushing her to do that intense of a, of a plan?

H:

Well, I think they started out, they did do ultrasounds. She's always, there's always been like, no, we need to look at that another time. So kind of along, I've had a situation like that too, where it's the lower level and go to what we need to be at.

K:

Okay. So she also has some, has some characteristics that make it murky a little bit. So she does, it is justified to do the MRI every year then. Okay, that makes sense.

I've just realized I've forgotten to ask you a really important part of your story with the Block Center. Um, personally, this last December, I had a scare and it was looking like I had a lymph node that was, it was highly suspicious and turned out to be nothing.

But I was already making a plan for if I had, you know, lymph node involvement. My plan, after looking at every possible scenario was to go to the block center. Um, I was very impressed with what they were doing. And I also really love my medical oncologist here in Oregon, but, uh, I had a plan to make it work and I wasn't quite sure of the financial implications of that.

So I wanted to ask you what were, and I know it's been 20 some years, but what were the financial implications for you?

H:

Yeah, I mean, I had pretty good insurance. My insurance covered almost everything. Um, there were some blood tests that we would do that are a little more, uh, things, you know, where we're looking at different levels of lycopene and different things like that we would pay for. And then my supplements, I, we also paid for, so like Vitamins that they, um,

K:

So not a lot of money. Not, not hundreds and hundreds or even thousands of dollars of investment. It was really insurance even 20 years ago, insurance paid for it. So all the more so now I would think.

That's really encouraging to me. Um, Dr. Block, not only. He, he not only kind of stresses the importance of doing lifestyle modification during your active treatment, but he also follows up after and does a lot of follow up work, which no one in the world that I'm aware of does.

Maybe somewhere in Europe they do, but I've never heard of a follow-up program to prevent recurrence the way that he offers his patients. Did you, I mean, obviously. Metastatic is very different than recurrence prevention, but did you have any, um, follow up long term like that, that you wanna talk about or describe that? Was it good for you?

H:

I just incorporated a lot of things from the beginning and I have kept with a lot of them. So, of course you kind of make tweaks along the way. Nutrition's changed a little bit, you know, but, um, some things have gotten easier. Some things are just the way we do them now. It's, you know, so, um, I, for me, it wasn't. When people would talk about, you know, kind of being done with my initial treatment and like, you can get back to life. And I was like, no, why would I go back to what led me to cancer. Like, I'm not going back. I, I'm creating from here.

K:

Yeah, it's tricky. It's so tricky. 'cause you know, we believe still that cancer starts with a carcinogen that comes from our environment. Something we can't help and that our weakness to cancer has something to do with our immune system, right. And levels of inflammation. But yeah, diet and lifestyle can really affect.

The levels of inflammation and our resilience in terms of turning off the epigenetic switches. Like if, if we're genetically prone, which I think anyone that's had cancer, we, there's probably some gene somewhere that we haven't discovered yet that we are weakened by the, the mutation for. But yeah, the lifestyle stuff is not, it's not a sure thing, but it, the likelihood is we're turning off those weaknesses by strengthening our lifestyle. It's peace of mind, right?

H:

It's "I am doing something. That's a huge component of this to me, and that's what led me even in the very beginning was, okay, I go for treatment once every three weeks. What am I doing? The other, you know, 18 days? Like need to be involved, to be feeling like I doing something to, you know, make myself stronger mentally, physically, all of those things.

K:

Oh, that's such a good point. I was gonna say in the beginning when you described your oncologist saying to drink some green tea and eat fruits and vegetables, I was assuming when she said that to you that she was a believer in the placebo effect. Go and do something positive for yourself, whether or not those things are really making a difference.

Because a lot of doctors are learning that psychology of cancer is such that you need to give someone a placebo. You need to give them. Something so that they feel empowered and it's, it's been shown in research that placebo works. You know, something that may not even be actually doing physical, biological good can do you good. Just because of the psychological nature of, and the power of it.

H:

Absolutely. And also not believing, like I was not somebody who was asking. I did get some statistics early on because they thought I'd be an earlier stage, and I remember as soon as I found out I was stage four, I was like, oh no, I was in those. Terrible statistics, you know?What turned things around for me with that was my brother, who's a doctor, who said, listen, nobody can determine what side of the statistics you'll end up on. Like, they're a probability. They are not a for sure. And that changed everything for me, you know, to be able to go, okay, even with this, there's nobody can decide. It was huge for me.

K:

Yeah. And I know that a lot of metastatic patients come to you desperately wanting to know the exact formula of supplements and foods, and I'm so glad that you hold that lightly, that you're not passing it to them with a stressed out kind of Yes. You need to do exactly this formula. No, it's not about that.

So, and, and that's why I was willing to have you on because I, I really actually protect the, um, the podcast from folks who are. Nutritionism, you know, kind of patients because I don't want any of that to be over-stressed, um, as much as I do believe in it.

H:

I, I will say that to people often, like, you can, I can tell you some changes to make but if you don't believe or want to, if it's only gonna add more stress, you know, like that's not the point of this. The point is to build good habits that actually have good effects, not add more to your plate, and every woman needs that.

K:

Yeah, and I think that's kind of my definition of nutritionism is nutritionism is taking nutrition and adding fear. You don't want fear in that recipe because the fear will outdo all of the good that the nutrition does. So because of that, I am able to very joyfully endorse your offering. You have a free offering to your listeners that's called The Five to Thrive Program or guides. Tell us a little bit about that.

H:

Yeah, so I've created multiple "Five to Thrive" Guides and they are just meant to help people kind of create a plan to live with cancer, and they're just. little tips and tools based on mindset, fitness, nutrition, medical, and social components, kind of the areas that we really realized that I focused on the most and still continue to focus on. My hope is just always to give people hope and some tools that they can then build a plan that works for them. Right. The goal is always to live with cancer and, um, there's no one way to do it. I know that, but I firmly believe that helping people find some areas to focus on. It's kind of like, here's the green tea that my doctor gave me--areas that you can really impact, um, how you're living, um, in a, you know, big and small ways.

K:

Yeah. And I'm so glad that you, unlike other influencers, you're not outlawing meat or outlawing dairy, you know, you're saying, you know, it's, it's a real gray area. It's, you know, those things. And that's totally my philosophy too, is those things can be good or they can be really, really dirty depending on where you're getting them. Thank you for being clear about that. That's so important. So how do people find your, your website?

H:

Yeah, I'm, my website is heatherjose.com and, um, my products are on there. My eBooks are there. Um, and you can also find the podcast is called, "I'm Still Here... Life with Metastatic Breast Cancer."

K:

So you do like a weekly episode?

H:

We were doing two a week, and then I was like, this is crazy.

K:

Yeah. That is crazy. I agree. Okay. And Heather Jose is spelled the traditional way of Heather, and then Jose is like Jose, uh, JOSE. All right. And I will link to those resources below. Heather, I'm so grateful for your generosity with our community, just your openness and the time that you have spent to share your story week after week, and your husband too, and you know your whole family.

I'm so grateful for that. It is such a bright and promising and hopeful story that I want everyone to hear, so thank you for coming and sharing it here.

H:

Thank you. I, I really appreciate, um, having the opportunity and I would love to, if you want to at some point come and join on our podcast as well and we can talk a little bit more about Nutritionism.

K:

Oh, awesome. I would love to. That would be great.

H:

Yeah, people often, they do want a guideline, but I want a guideline that that is, based in truth,

K:

It's tricky. It's real tricky cause we're continually learning always. We're always learning and perfecting in nutrition, so...

H:

Yes.

K:

So good to get to know you. Thank you.

H:

Thank you.