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I'm back for a short season interviewing my personal favorite oncologist friends... the first of which has published a wonderful book that goes on sale today! I'm sure you've heard of Dr. Teplinsky if you've been on the breast cancer end of Instagram. She's an amazing collaborator with some really wise doctors who are trying to broaden lifestyle limits that most of us breast cancer patients and survivors encounter every day--things like dry skin, brittle bones, stiff joints, and incontinance. Most oncologists don't even speak to these post menopausal and hormone blocker symptoms, but Dr. T has an amazing toolbox full of suggestions and her book is a great summary of them all. I hope you'll enjoy learning from her here.  We talk about: the Wisdom Study for those at higher risk, the safe use of estrogen and other supplemental hormone precursers like DHEA and Testosterone, the dangers of alcohol use before and after cancer, and the new ways that AI, in its current basic form, has shown to be promising for breast cancer science.  Even though Elenora is an oncoloist--she's not YOUR oncologist, so don't take her or my words as medical advice please! - Related Videos: The youtube playlist of both of my first two podcast seasons: https://www.youtube.com/playlist?list=PL6UwzXU_5wZHEnUiAVtorqEsWpcYTBDpC - Links: Find the new book here:  https://interludecancerstories.com/book/   Did you know that I'm on substack? My publications there are at https://abreastcancerdiary.substack.com    The land where I recorded this video was once Kalapooia Tribal land. Join me by contributing to and learning from your own local indigenous farms here: https://www.soulfirefarm.org/get-involved/reparations/

I'd hoped to make season two an even 20 episodes again, but there's more important work to be done right now....   Transcript:  Well, I had hoped to have three more episodes before closing for the summer, but I had a long month and a half off after my dad's passing, and I didn't get back on until last, uh, two weeks ago. And in the meantime, our country seems to be in quite a bit of turmoil. Our world seems to be in quite a bit of turmoil and I don't feel comfortable kind of moving merrily along on my path, just ignoring that at this point in time. I've always been an activist, at least at heart. I have only been an activist actively since I was about 30, when I adopted my daughter, but. I think I was meant to be an activist 'cause I picked it up and ran with it. And, uh, so I feel like that's where I need to pour my efforts right now. A lot of heartbreaking things going on in our country. A lot of shock and awe, which is just part of the plan with this administration, but also just legitimate, heartbreaking. Things happening. A US center senator in California was thrown to the ground by the FBI in his own federal building in his own state after having been invited there by the feds. And, it just seems particularly interesting that they invited him there and provoked him to speak and, um, speak the truth and then threw him to the ground and handcuffed him. That I just can't get over that, that is like so rattling to me that I can't talk about anything else right now. And today I'm recording on Saturday, the day before this is going live. And today is No King's Day, otherwise known as Trump's birthday and, Flag Day and the 250th anniversary of the military or the army. A lot of things today. It's a, it's a very momentous day and I've already been to one demonstration and I'm headed out in an hour to go to another one. And that's what's giving me life right now. I can't even talk about breast cancer advocacy because I've gotta get out in the streets and do the thing that brings me hope. Um, but I wanted to share, for those of you who are intentionally ignoring the news the way that I did up until a few months ago, I wanted to share some of the things I've been learning. That do affect us in all of this as breast cancer survivors and patients. And I think the most upsetting thing to me is this, um, what they're calling the big beautiful bill in Congress and, um, all of the damage it will do to Medicare and Medicaid patients. We've already seen a lot of our breast cancer research funds go away. They're gonna be going away permanently in the fall, but they're starting to dwindle already now. And I, I would encourage you to not give up on breast cancer research and do what you can to contribute to research through organizations like the Breast Cancer Research Foundation and Komen and other local research, uh, providers so that we can keep as many scientists in our country as possible because a lot of them are already leaving for Europe, where they'll be paid to do what they're good at. But I also wanna talk about the VA. Uh, the fact that VA is slated to lose 83,000 employees and the VA already serves breast cancer patients really poorly right now, they are stretched thin on the budget that they have right now. And so just imagine 83,000 employees going away Our veterans who, largely because of their service in the military, are being exposed to the toxins that cause breast cancer are going to be left out in the rain, out in the cold and not served sufficiently at all. And that is really tragic to me. I did wanna say one thing that I was hoping to say in this episode, the episode that followed my interview with Nanette. Uh, before I go for the summer, I wanna say, uh, there was a reference in my interview with Nanette where I kind of was shocked and showed my shock very candidly. And, um, that was because I had just read, a review of, of trial, of studies, making it clear that CT scans are extremely dangerous for us cancer patients and for people in general, especially when they're performed over and over again in close proximity, like within a year of each other. So I was really shocked to hear that she got regular CT scans as a part of her trial, and I think that's pretty common. Trials are there to see if drugs are working, and the way to see if drugs are working is scans. Um, and CT scans are among the best. And so of course trials are gonna be set up and designed to require a lot of scans. I think. It's really hopeful to me that, um, we still have some research money here in the US for breast cancer and the research money that we do have still here in the US is the kind that, requires things like patient involvement in studies. And I just became a patient advocate on a, on a study myself that hasn't been funded yet. Hopefully it will be funded, but it's, it's in the application process for funding. Going to a different source than the national, the federal funding that's been stripped away. But, um, I think it's really important that, that we as patients are advocating for things like less toxic scanning because based on. Results of studies like this, which I will reference. I have, actually, I'll just point you to my, my Substack. I have a, a paid substack that is for my clients only and it's just, a subscription service. But I do every once in a while have posts on it that are free. And so I'll just point you to that where I posted, uh, a free reference to this. Um. Review a systematic review of studies that shows how dangerous CT scans are for cancer. And that is at cleanupafterbreastcancer.substack.com. And it's not the last post that I made, but it's the second to last post that I made, and that's why I responded to Nanette with such shock at, at hearing that she had CT scans every six months. I think as patient advocates who sit on trials on the boards of trials, we need to advocate for less of that kind of toxicity now that we know just how toxic it is. So that's my one little breast cancer plug for today. Um, but I also wanna tell you about some other things that I've been thinking about in the last week or so as I'm trying to. Discover what my involvement in on the national situation will be. I really liked, I, I always love Heather Cox Ri Richardson, which she is, is kind of the most famous person on Substack. So since, since I moved all my socials over to Substack and all of my videos and, and audio over here to podcast, um. She's been someone that I've really been enjoying listening to, and she's a political historian. Um, her main job is as a history professor, and she's been a really good general public lay educator lately on both substack YouTube, so I hope you'll check her out, but she had a. A discussion a couple days ago with Pete Buttigieg, who was just remarkably hopeful. He has this ability to get up out of the current circumstances and see the big picture, the long term picture, like Heather Cox Richardson is looking into the past long term learning from all the lessons of the past, and Pete Buttigieg seems to be a, like a future historian kind of a "Futur-orian," where he's able to look at the big picture and see where we might end up. That's hopeful as a result of what we're going through now and. Both of them were saying that yeah, it's gonna get worse before it gets better. Um, Heather was saying that the next three months are pivotal, and that's why I really wanna take the next three months off and do everything I can to restore our democracy. It's already backslidden massively in the last couple of months, but I wanna pour myself into that as an activist. But, but Pete was saying that yeah, it'll get. Worse before it gets better, but when it gets better, it might get way better. Like it could also just get way better. 'cause we've had a lot of really icky stuff in Washington. I mean, people are pretty disoriented with both sides of the political spectrum for good reason because our leaders have been bought out. Like they've, they've been. Pretty much just thinking about themselves in a lot of ways. Not all of them, but a lot of them. And so if we can kind of have a, a fresh start and kind of a renewed spirit, um, and cut down some of the traditions of callousness in, in politics, um, and, and money grubbing in politics, once we get past this like. Oligarchy problem and the billionaires being the only ones that seem to have a voice right now. Um, I think, you know, we can have a lot of really grassroots leaders coming up from the states that are much more effective at caring about the little guy than the current folks are. So that was really helpful and I encourage you to go and, and listen to that on Heather Cox Richardson's Substack channel. Uh, I think that's helpful for everyone. And the other thing that's really hopeful for me on a daily basis is that I am associating myself with not a party, not the Dems or the Republicans. I grew up in a Republican household, um, staunchly Republican and around pretty much all Republican people. And you know, for the last 20 years I've been a, a staunch progressive, sometimes third party, sometimes democrat, but. I am so in love with this organization that I am leading with that I'm on a steering committee for locally called Indivisible. If you haven't heard of it, go and look it up. It's two young people, husband and wife who worked in the Obama administration and, um, learned not just from Obama how to do things, but learn from. The icky, ugly tea party folks how to organize, and they have been organizing since 2016. Not just Dems, but Republicans too. People who are fed up with the way that things are going on both sides. And, uh, they wanna bring us together, and that's the word, indivisible. We, we need to stand together as a country and not be so divided, which we are because of Facebook, you know, because of social media. We

My colleague and friend Nanette has been leading yoga for breast cancer survivors for the past few years in her community of Austin Texas, even as she's navigated the tough journey of recurrent metastatic disease in her bones. I think you'll love her spirit as she shares her story... Link to yoga4cancer: https://yoga4cancer.com/ Transcript: Today's guest is Nanette Labastida. She's in Austin, Texas, and she and I have been ambassadors together for Stand Tall AFC over the years. She is a realtor by trade, and her passion is yoga, which we'll talk about at the end of the interview. But I want to start out by asking Nanette about her background, diagnosis, and current, uh, treatment plans. Welcome Nanette. Hi, I am so excited to be here and chat with you. So yeah my history, my background diagnosis, I was originally diagnosed in 2010. I was 42, um, with breast cancer and it, it was--back then I didn't really pay that much attention to the words-- but I do know that it was ER/PR positive and HER2 negative. And I had chemo, like four rounds of chemo, no radiation. Um, and I had a mastectomy with implants, you know, with, uh, expanders and then implants. And I did tamoxifen for four years. and then in 2019 I explanted to flat. And so that's when I joined that community. It wasn't necessarily through any. um, implant illness Um, it was more like discomfort and never feeling like myself and knowing that at some point they'd need to be changed out and I'd rather not. I had the ability to do it timing wise and insurance wise--zero regrets. And then in 2022, um, I was diagnosed with, uh, stage four metastatic breast cancer. Um, so it was a recurrence, with mets to few spots in my bones, rib pelvis, and a couple on my spine. I think, um, a collarbone lymph node here, which is really the thing that got me into the oncologist. Thank goodness. And pleural effusion around my lungs. Uh oh. And then I started, uh, treatment at that time I was actually qualified for a, a clinical trial. My doctors did some research immediately and just based on like all the factors of my previous treatment and the type of cancer, all the stuff I, I entered this trial called the Serena--I might not remember the exact name of the trial, but the trial was a blind trial in which I was taking (a CDK4/6) Ibrance, taking two other pills. One was. Anastrozole. The other pill was a new drug called "SERD," or a placebo. So I would take both of them not knowing if I was getting which med I was getting. So I was getting treatment, I just didn't know which one. Okay. And it turned out in the end. Now, you just recently found out, uh, that you were on the blind arm of the trial, which means you were only taking a CDK4/6 inhibitor. It turns out I was not taking the SERD, the new trial drug, which was the blinded. So I was taking anastrozole, so I was on what I'd have been on if I wasn't on the trial, like the standard is like almost everybody or you know, a lot of people, they just do the, the CDK4/6 inhibitor and the AI and that's what I ended up being on for three years, almost three years. I didn't get the trial drug, which I've heard that it might be out later this year--a SERD on the market--an oral SERD. It's, it's, I think you had someone recently talking about fluvestrant and that's a SERD. Um, so it's kind of less, less quality of life and, and they all work a little differently anyway... For the sake of listeners who don't know what a SERD is, um, I personally got it mixed up with SERM, which is very similar. So there's selective estrogen receptor modulator. Or a SERD is the newer drug, which is a selective estrogen receptor disruptor. I believe those are the words.  Degrader.  Degrader, okay. Thank you. So it's, it's actually degrading the receptor site so that the receptor can't receive estrogen, right? Is that the mechanism?  That's the mechanism, and so it's similar to an AI's to an aromatase inhibitor, but from a different like angle is what I understand. Well, it's similar to Tamoxifen, I think. Tamoxifen is a SERM where it's a, um, modulator, so it'll, it'll block the receptor so a SERM sits in the receptor and blocks it from receiving any oth other estrogens where a degrader, I think destroys the actual receptor. I love talking about the science. I, uh, I, I'm learning more and more, you know, especially 'cause I'm sort of such in the depths of it. And I also, like last year, attended the San Antonio Breast Cancer Symposium, um, as a patient advocate. And it, I, I'm so glad I did in this progression because I am so aware now you know, and I can bring them up to my doctor. It was. It I thought it was like too much information, but there's definitely some that like settled. Awesome. Yeah, me too. I'm, I'm hooked. Yeah. Okay. So tell us about what happened. So you had Mets in 22. Okay. That's when you started the trial right away, when you started with your diagnosis of Mets. So that's three years ago. And then just this year in 2025, you had another. Incident or, um, you know, change in your diagnosis. So tell us what that was like and, and how you understand that now. Yeah. Um, yeah, this was, um, you know, for people that don't totally know some of the terms, progression is when you've had metastatic cancer, You have it and it's been stable or even no evidence of active activity, cancer activity from your treatment, and then some scan or some results of something shows that it's active again and maybe grown in that area or there's a new area. I had a scan that showed it. Yeah, I had a, um, I had a CT scan, which I was having every three months, and an area in my left pelvis that looked larger, but they, it's where I had mets originally. So they were sort of like hesitant to say, or they couldn't tell, like the CT scan doesn't necessarily show that. It just showed that they were like, they were like, maybe it's just bone degeneration from been affected although, and I had had some like hip pain and I was doing this sort of typical cancer survivor sort of thing of like, "Is this bad? Is it just 'cause I'm working out? Is it 'cause I'm 57???" Is it, you know, you know, or, or is it like alarming? I need to bring it up. And you, you always wanna not bring it up even though you probably should. And I had gotten to this sort of like. Feeling like, Hmm. It's kind of gotten constant. So, then I got this result then, and that was right before going to YSC, which we'll talk about later. I had to like go anyway and, um. You know, sort of shelf any worry. And then when I came back, I had my sort of actual doctor's appointment and my tumor marker result, like numbers were up a little bit. Okay. I immediately, you know, like you sort of put puzzle pieces together. So I was pretty certain, um, that it, there was progression, but I also had to have a, PET scan scheduled and an MRI of the pelvis. And then I had to delay this appointment, but I also have an appoint, had an appointment with a orthopedic oncologist for X-Ray conversation. I love seeing him. This is my second time and he just gets a little nerdier deeper into the bone structure. Um, I. But he's not my primary oncologist. So yeah, it showed activity in my pelvis, um, in the, uh, I can't remember the scientific term, but it's the back of my pelvis. Um, and there's a hole there. Um, and that's why it hurts. Oh, wow. And the rest of the bone is like an eggshell. So I'm a fracture risk. Um, and. I also had to have a biopsy of that, which was it, it was not as bad as I thought, but you know, like that really scared me to go get something from my bone. It's so different than a soft tissue, you know? Right. A marrow biopsy then? I think it was, yeah. Yeah. I mean, I, I was, you know, semi like twilight sedated, so it really was like, it was like, oh, you're done? Ok. That's not so bad. Um. And that is to, I, I know there's a lot of tangents on this topic, but there are a lot of tangents in this world, and so it just goes this way. So the reason for the biopsy because of mutations that exist in, um, cancer treatments in cancer. . I think largely as a result of being on treatment, but, you know, can, there's these mutations that can come onto your cancer type that completely change the course of treatment, um, if you have them. Um, and so it's, and that's one thing I truly learned like deeply at San Antonio Breast Cancer Symposium--the, the need for this knowledge to figure out your next treatment and not just go, oh, you have progression. We'll just try another version of the same drugs... Which is what we used to do.  Um, so, the, while waiting for the results of that, because they're actually still not all the way in, he, my doctor did put me on versions of the other drugs. So I started treatment, I started with, um, another. , CDK four inhibitor, verzenio and then flu tran shots, which is the third that we were talking about--it's a different, different manufacturer and it's in a shot. So it's a different version of this, and different manufacturer. Um, and you know, he's just like, we just wanna get some, you know, some treatment Started. And it was interesting because I had a very difficult time getting Verzenio delivered because of insurance. And this is actually another tangent, but like my insurance is actually quite good and I have, when I meet my deductible, I have a hundred percent medical coverage the rest of the year. So I learned I learned from Ibranz that I can get these drugs classified as a medical benefit. And then they'll be a hundred percent covered instead of a benefit. However, getting everybody to understand that on the same plane is really challenging. For some reason, the insurance actually was the first one to like, approve it for that. But the pharmacy needed lots of information and my doctor's office was like still submitting it as a pharmacy because that's all they know, you know, and, and so I had to keep explaining. So it took a really long

Just a quick episode reflecting on Heather's story and the difference between "functional" or "integrative medicine" and "alternative" medicine. Subscribe on: APPLE PODCASTS - SPOTIFY Join my Newsletter List here: https://abreastcancerdiary.substack.com 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. U

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,

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:  APPLE PODCASTS - SPOTIFY - AMAZON Join my Newsletter Mailing List: https://abreastcancerdiary.substack.com   Links:  NBCC: https://stopbreastcancer.org  LBCA: https://lobularbreastcancer.org Tigerlily Foundation (WOC, young ambassadors locally): https://angel.tigerlilyfoundation.org/ Inflammatory Breast Cancer Network: https://theibcnetwork.org/ Project Life MBC (metastatic): https://www.projectlifembc.com/ Project Life MBC/LGBTQ: https://www.projectlifembc.com/project-outreach MBC Alliance (metastatic): https://www.mbcalliance.org/members/ Triple Negative Foundation: https://tnbcfoundation.org/ Stand Tall AFC: https://standtallafc.org Not Putting on a Shirt: https://notputtingonashirt.org/whcra/ Make Cancer Less S****y: https://www.makecancerlessshitty.com/our-ambassadors Young Survival Coalition (science and legislation): https://youngsurvival.org The Breasties: https://thebreasties.org/ For the Breast of Us (women of color, national): https://www.breastofus.com/on-podcast/ Cancer Culture (for metastatic patients, event driven, in Virginia): https://www.cancerculture.org/   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 th

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: https://abcdbreastcancersupport.org/ Stand Tall AFC is the flat visibility organization that I work for: https://standtallafc.org Lobular Breast Cancer Alliance welcomes advocates of all types: https://lobularbreastcancer.org Wildfire Magazine is here: https://www.wildfirecommunity.org/ AskEllyn's blog is here: https://askellyn.ai/lifestyle-blog-sharing-breast-cancer-wisdom-stories/ Blessing Box, out of Texas, is here: https://blessingboxproject.com/ Knitted Knockers is here: https://www.knittedknockers.org/   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 gr

Subscribe on: APPLE PODCASTS - SPOTIFY - AMAZON Join my Newsletter List here: https://abreastcancerdiary.substack.com 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, n

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. [email protected] Listen Here ...and Subscribe on: APPLE PODCASTS - SPOTIFY -  AMAZON Join my Newsletter List here: https://abreastcancerdiary.substack.com Resources: We spoke about Christine's new film premiering on April first. Here's the Preview! You can buy tickets to join us here, 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 Stand Tall AFC 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 li

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 wo

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 [email protected] Subscribe on: APPLE PODCASTS - SPOTIFY - AMAZON Or watch on YouTube: https://youtu.be/agbu6QjDiXs Support my work by making a donation here: https://liberapay.com/abreastcancerdiary/ Join my Newsletter List here: https://abreastcancerdiary.substack.com 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

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 [email protected] Subscribe on: APPLE PODCASTS - SPOTIFY - AMAZON Or watch on YouTube: https://youtu.be/agbu6QjDiXs Support my work by making a donation here: https://liberapay.com/abreastcancerdiary/ Join my Newsletter List here: https://abreastcancerdiary.substack.com Resources: The facebook group that Danyel and I connect on is called Oregon Flatties The Photo experience that we referred to is Warrior Women Portraits, 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 me

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 pr

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 here. The checklist I mentioned is here: https://www.center4research.org/wp-content/uploads/2019/07/Black-Box-and-Checklist-Consent-Form-PDF.pdf A report on Breast Implant Illness is here: https://www.center4research.org/wp-content/uploads/2021/01/Breast-Implant-Illnesses-Whats-the-Evidence.pdf The website I mentioned for implant-associated lymphoma is here: https://justcallmeray.org/ And a short interview about Squamous Cell Cancer and implants: https://podcasts.apple.com/us/podcast/breastcancer-org-podcast/id781242172?i=1000584263441 A great advocacy group that will help you to advocate for better research: https://ourbodiesourselves.org/ 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

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 [email protected] Subscribe on:  APPLE PODCASTS - SPOTIFY - AMAZON Or watch on YouTube: https://youtu.be/agbu6QjDiXs Support my work by making a donation here: https://liberapay.com/abreastcancerdiary/ Join my Newsletter here: https://abreastcancerdiary.substack.com  Resources from this Episode: Christina's interview with Women's Health is here 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 b