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: APPLE PODCASTS - SPOTIFY - AMAZON

Or watch on YouTube: https://youtu.be/agbu6QjDiXs

Support A Breast Cancer Diary Podcast by making a donation here:

https://liberapay.com/abreastcancerdiary/

Join our Newsletter List here:

https://abreastcancerdiary.substack.com

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 8^th surgery and is probably going to have a 9^th, 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 topless. I would have been fine with going topless in the fashion show if that had happened, but it made my daughter a little more comfortable that I was covered up and so, you know, I just, I try not to be so extreme that I make my family upset about it. So it's kind of a fine line between being there

K

 

Well, I feel like for me, it's a part of my healing. And so I have to get it out of my system or into my system. However you look at it. It's a season. I don't think I'll be healing forever from this trauma, but for now it's a part of my self expression, my new identity, my body love, my self acceptance.

E

It is really, it is a healing thing and, you know, I don't know about you, but I'm, you know, two, not quite two years out from my surgery and it's interesting now, like I look at myself in the mirror and maybe my husband looks at me and sees me differently, but don't even notice anymore.

Like it's, it just, it is amazing how it just becomes sort of part of your physical being and you get to a place like, the body acceptance actually for me came quite quickly. Yeah, it was just more the trauma of going through this, you know, I think it's more, um, some of the other physical side effects that I've been struggling with, you know, just gut healing and emotional healing and that trying to compartmentalize you know, we've already had the shoe drop once and we just sort of are waiting for it to happen again and we get into this community and unfortunately, people do. Get sick and die, you know, uh, and that's anytime that happens and it's someone that you know, that's also hard. So unfair.

K

Yeah, definitely. You talked about your daughter. Tell me about how her response was initially to your diagnosis.

E

So yeah, so she was 23? 22, she's a 2000 baby, so she just turned 24. Uh, so she was 22 when I was diagnosed and, you know, I think, you know, um, she was living, she wasn't living at home at the time. She was in college and she was in Toronto. and she had just after I was diagnosed, she fell in love for the first time and she had a boyfriend. So she wasn't home a lot. Um, yeah. When I first told her, um, she shared with me afterward, she, went for a big walk with her roommate and just had a massive cry. Because I think that the first instinct was, well, this isn't happening, you know, my mom doesn't have cancer. Or, you know, she was so convinced that it was going to be fine when I told her I'd found the lump.

And when I told her it was actually cancer, and I remember her asking me, she said, are you going to lose your hair? Because, you know, 22 year olds, it's all about the hair. And I said, yeah, I probably am. Um, and it wasn't until a year later and she had moved back home and she and I were sitting talking and she said, I was really angry with you. And I think my husband was too, um, and I said, that's interesting. I said, tell me more, like, why would you be angry at, you know, the lady that has breast cancer? Why am I the subject of anger? she just said, because you're not supposed to be the one that's weak here. Like you're not supposed to be the one that's sick. You're mom. what I do find in my family is, I said, we are, I said, we're like a teeter totter. So when I'm up, everybody's up. When I'm down, everybody's down. We don't balance each other out very well. So the whole mobile kind of went wonky when I fell apart. And, and, and, you know, and she just said like, pull it together, mom. Like she just couldn't understand why I couldn't kind of get it together. I just don't think really anybody that hasn't had cancer can really, appreciate the immensity of the emotions and the fear that you feel. So yeah, so I thought it was really courageous of her to share that with me. And she said she, you know, really thought a lot about it. And she said, you know what, I understand now that I was angry at the circumstance and angry at the fact you got cancer, not at you, but that wasn't how it computed at the time.

K

So had she not seen you in a position of weakness like that before?

E

Um, no.

Yeah. I'm kind of the I'm the rudder of the ship around here, and uh, and she had a really hard time with me when I lost my hair. She had a really hard time. She couldn't, she couldn't see me bald. She just, I had five wigs, and so I used to wear the wigs around her, and I remember her boyfriend at the time was a very tall guy, he was like six foot five, and I remember being in the front hall one time and having, he wanted to see, and she didn't want to see, so he stood in front of me, so that he kind of shielded her, and then I took my or wing off at the time so he could see my bald head. But yeah, she didn't want to see it.

K

I remember that you shared the progression of your hair growing out on Instagram, and you were always just really candid and real about it. Just the awkwardness of the different stages, and I really appreciated that.

E

I think it's kind of, you know, I still do it. I still do, you know, who wore it better. I just, I just, I think I'm going through or I just had, I just had it trimmed. So it's, it's a little shorter now, but I was going through the 1970s rockstar phase. I mean, literally I could take a picture myself compared to like Robert plant and had the identical haircut.

So, you know, I kind of, know, so those are the things that I search. When I was going to lose my hair, I was like, what does it look like? And what does it grow back like? And everybody's thinking these questions and the different stages of regrowth and how to style it at different stages and everything else.

And of course, mine's come in very, very curly. So that's. kind of a different thing too. So I just, you know, if I can present that in a real way and a kind of a human way and yeah, yeah. So I'm always perpetually snapping pictures of myself just out of bed that's like standing up on end of crazy things.

But yeah, I can make people smile. That's always a good thing.

K

Yeah, you do. You're good at that. Now, I wanted to ask you a little bit about your son. You said in the book that your son was really brave and kind of asked you to assess the severity of your situation and, and tell him. Just how bad it was.

E

Yeah.

K

Tell us that story

E

Again, you know, both the kids were kind of they're very different people. Um, and my son is a very introverted, very, uh, cerebral kind of guy. And so with him, you know, it was the same thing. He was like, I think it was, you know, kind of them working through this place of disbelief.

I remember we went for this walk. There's a country inn not far from where we live. And it was early spring, so it was still kind of snowy. And he is a dog, and we took our, our two dogs. But for walk together and I remember him saying, you know, like, well, maybe it's not, you know, like that was kind of the sort of the bargaining thing, right?

And then there were little milestones along the way. So, um, they have a little, well, he's now, he's now two. Um, so the little grandson who was born the night, the night before I finished chemo. I remember, you know, my last, my last, uh, trip to the chemo suite and being like super proud and showing these little, you know, brand new newborn pictures on and I have a photo of he and I at Christmas time that year and I'm holding him and we're both bald and it's at some point he's going to understand, you know, and he'll be able to, I'll be able to explain to him, you know, what was going on in that photo.

So. Um, yeah, so it's been kind of a really interesting part of the journey, you know, like finding out that they were pregnant and I had just found my lump. And so that whole sort of journey, kind of, of having the grandbaby and, and then becoming parents is kind of really parallel

K

Well, I want to wrap up just by talking about the blog and some of your favorite entries and some of the authors that you've had come on and what they've had to say

E

So there's one, she's also a functional health practitioner, uh, also a flattie, and she reached out, and she wrote a piece on sex and intimacy, which is such a big thing, which no one, nobody talked to me about it. I don't know about you, but. It, it's really poorly discussed and communicated, what's going to happen to your body. And there's, you know, as women are diagnosed at a younger and younger age, it's just such a relevant topic. Um, and a woman that I know who was reading the blog reached out to me on Instagram and I shared this, this feedback with the lady who wrote it, but Tracy, but she said, want to thank you for that piece that I felt seen for the first time.

And I thought, wow. Um, you know, and then I've had women want to share their stories. So we had one young lady out of the DC area who was pregnant when she was diagnosed with breast cancer and having to go through, I mean, just imagine, you know, being scared out of your mind let alone your unborn child and having to go through that experience. And then, uh, another young lady, uh, she had several losses of, you know, uh, in her, in her fertility journey, uh, has a child now and is awaiting the birth of a surrogate. Um, so, you know, just those are very real. Those are not my experiences because I'm, I'm almost 60.

So, you know, having those, you know, stories and being able to, and I think it's cathartic for them. It's, it's just, it's really, I just love it. I just love. And I would, you know, I, I, I just invite anybody that wants to share, share their stories or is a gain their wisdom and sort of looking at it again through all these different lenses, the work you're doing around nutrition is so important, yeah, it's, it's kind of taking on a little bit and I love that I'm getting global response. It's really cool. One of my favorite things to do is I see on my, um, my analytics now I can see. So, where in the world people are accessing this website and it's all just organic at this point. But, yeah, I've got, like, people in Australia and Iceland and it's just, it's really cool.

K

Oh, that's great. I'm so glad that I can help get the word out that you are willing to partner with folks, even folks that are not professionals, but who just want to share their insight.

E

That's, you know, always an option that's available and I always am there as an editor for people. So I'm just, I just, just get your raw ideas down, me a voice memo. I'll, you know, turn it into a transcript and the important thing is that people shouldn't feel that, you know, their ability to write or not write, it shouldn't be a barrier to them participating.

K

Awesome. Yeah, you've got all the technical skills to make things work that way. So that's great. Well, yeah, I'm so glad to help you get the word out about that. And I know you have a lot of stories to share that you have shared on other podcasts about your AI tool. And I will definitely link to those podcast interviews in the show notes so that folks can learn that story. I know you've already talked about it a lot with other, other podcast hosts and other venues, but that's a fascinating story that just blows my mind.

E

I mean, you know, the big thing to know about Ask Ellen, who's, you know, she's sort of part of this blog and part of the website and everything else is, you know, really the, the thing is that people need to know is she's, she's non medical. So she's really there to be that friend to hold your hand at two o'clock in the morning. She's always going to be gracious and kind in her responses. She is me, like you could ask her a question to me a question and the answers are almost going to be identical because she really truly was recreated out of sort of my brain and she's private. So we don't ask for registration or collect any data at all.

I have no idea who's, who's talking to her at any point unless somebody raises their hand and tells me that they're using her. Um, and the reason for that is that we wanted it to be something that was just a really safe space where I always say she's like the Catholic confessional, except there's a priest on the other side as well, to her, you can rage at her. You can ask her the most inappropriate things you want. She's not there for just the patient, but she's there for those family members. for the friends who are like, you know, what do I say? What do I do? How do I behave? co workers and, uh, and then she's always, she will always be free. So that was an agreement that I made with the team that built her for me. The technical team was that we would never, ever want to charge someone to use her. So it's not like for 9. 99 you're going to get to talk to my bot. That's just not going to happen. So I'll find other ways to, you know, Support what we're doing, whether it's through sponsorships or donations ,

K

And for folks who are as far out of the AI realm as I am, just the basic question is, is she an audible spoken interaction?

E

No, not yet

K

Is it written? 

E

Written at this point. It's text based at this point. Um, could she be does the technology exist to be voice? Yes. We just haven't had. Anybody, you know, demand it yet. But yeah, the technology is there. So it would be strange because it could be my voice

K

It should be!

E

every language like dialects and Bulgarian and like, it's going to be and I remember telling my husband that and I said, you know what? I said, if I die, you can go talk to me. And he's like, I am unplugging that thing because he's had enough talking to me for 30 years. He was kidding.

K

Well, thanks, Ellen. Thanks for bringing your sense of humor and levity to our community. I really appreciate it.

E

Its my great pleasure. It's, you know, life's hard enough. I've always looked at things through the glass half, you know, the glass half full lens. And, so even with breast cancer, you know, I, I don't know about you, but. Like I, I mean, obviously it was like absolutely devastating the first four weeks that I was diagnosed. It was just like a mess, but now I actually look back on it with a great deal of gratitude. Like, I'm still processing stuff, but its brought the most incredible people into my world, incredible experiences. Like, you know, and so, you know, for that, I'm, I'm really grateful. It's too bad I muse about this, but it's too bad that sometimes we have to go through something really devastating. devastating and scary to kind of really start to appreciate how wonderful things are.

K

well, thanks for taking time to meet with me and my listeners today. We will put some shots up on on the YouTube version and on my Instagram at @a.breast.cancer.diary. What are your handles on Instagram and ,

the breast cancer version of me is, is also the same as my book. So it's called @flatplease. So you can follow me there. And, uh, it's a really active and engaged community. Uh, and then I'm @ellynjane1 is my, is my other handle and I'm also on LinkedIn if people want to connect with me professionally as well.

K

And where, what is the website for AskEllyn?

E

It's askellyn. So Ellen is spelled E L L Y N. Thanks to my parents. So it's, it's askELLYN.ai
And there's tons of information up there and it's only going to continue to grow.

K

And that's the blog, too?

 

E

That's the same web address for the blog. Like when you go to the website, the idea is to kind of bring it all together. Um, you know, I'm starting to do speaking engagements as well. And then the book, you can actually access the, you know, to purchase the book on Amazon, you can purchase it from the website as well.

K

Well, thanks for all of your contributions to our community.

E

Aww, likewise!