A Breast Cancer Diary

Kathleen Moss

A Breast Cancer Diary is a deeply personal podcast where women tell the stories of breakthroughs, connections and paths to overcoming the challenges of Breast Cancer. It's for women who are facing decisions in the near future, as well as those who remain in this world years after diagnosis. It explores themes of body positivity, reframing of family, relationships, lifestyle, work, and it also explores recurrence, metastasis and the sacrifices that we don't normally talk about.

  1. 6月14日

    Season Two Finale on ACTIVISM

    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

    15 分钟
  2. 6月1日

    Yoga for Breast Cancer with Nanette Labastida

    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

    51 分钟
  3. 4月20日

    Reflecting on Integrative Oncology

    Just a quick episode reflecting on Heather's story and the difference between "functional" or "integrative medicine" and "alternative" medicine. Subscribe on: 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

    15 分钟
  4. 4月13日

    26 Year Metastatic Thriver, Heather Jose

    My guest Heather has been thriving with metastatic breast cancer for nearly 27 years! How did she do it? She feels that it's a combination of things--not necessarily the trial on stem cell therapy combined with high-dose chemo. She feels that her long-term drug, Faslodex, as well as lifestyle choices around nutrition, exercise and mindset are key in her success. Heather's web site is: https://heatherjose.com/ and her podcast is on YouTube at: https://www.youtube.com/@ImStillHereCancer/videos Kathleen does zoom based peer navigation/mentoring sessions now. Schedule a session here for a sliding scale of $35 to $95 per hour long session: https://kathleenmoss.simplybook.me/ Transcript: Today's podcast guest is Heather Jose. She's from Mount Pleasant, Michigan, and she's an occupational therapist, and the most remarkable thing to know about her is that she's a 26 year post metastatic breast cancer survivor and thriver. And that's a main reason why I have her on the podcast today. I've never met anyone that has lived that long and thrived that long after a metastatic diagnosis. I'm so excited to have you, Heather. H: Thank you. It's great to be here. K: Thanks for coming on. So a huge part of your story is, well, you're, you're a podcaster too, and you tell your story in an informal YouTube and podcast setting. Uh, there in your home with your husband usually, and sometimes your kids are, are joining to tell their part of your story. Um, so people can learn about your entire journey just by looking at back episodes of your podcast. But. I wanna hear what you feel you did differently than maybe some of the people you meet who have had metastatic breast cancer and how your path was maybe a little bit different than the conventional path after being diagnosed. Oh. Start out by telling us if you had an early diagnosis before your metastatic diagnosis. H: No, I was diagnosed de novo, so stage four from the start. Um. I think, and I, looking back, I was 26 when it happened, and I think some of what worked for me was being a little bit naive about a lot of things, right? I look at, my daughter is now 27 and doing great at life, but you know, there's a lot that you learn over the course of time, right? So I think it helped me to be able to just kind of go into this going, well, okay, how do I, how do I stay here? How do I figure this out without knowing, I don't know, even the gravity of all of it. K: Sure. Absolutely. And did you, how many months or years did you stay with just conventional treatment before branching out into integrative treatment? H: Well, the, my first doctor told me to get my affairs in order, I stayed with him for about 20 minutes and we were done forever. The, the next oncologist that I talked to was the next day. She told me even on that phone call, "drink some green tea, eat some fruits and vegetables and we'll start killing cancer on Monday." And it was so empowering, like, SO empowering. Here's a oncologist from the University of Michigan who you know, is renowned in her field and, and, she's telling me like, go get some green tea and it was the best thing ever for me. And that of course kind of was like, okay, what can I do? so right from there we started to do some research. And when I say we, I should say my mom, because I knew early on that I could not handle all the information coming in. I knew that it, I just needed to kind of protect my mind and kinda keep myself in a bubble. So she started doing, some exploration of, you know, what else is available that could help kind of bring pieces, of knowledge to the table. Because even at that time, and I, I know nutrition's tricky anyway, and I know you've talked about some of this, right? But you'll, somebody will tell you "a calorie is a calorie" and somebody else will say, "no, you have to do this." And we wanted somebody who was like, no, what we would like you to do is this, and the reason why is because the research has shown the way to go. So we actually found, um, an integrative oncologist early on. I, I was seeing him, I was diagnosed in December and I went to see him in February. K: And this is Dr. Block. H: This is Dr. Keith Block. So, yeah, and he's, um, he's in Skokie, Illinois now. He was in Evanston at the time, but they're just neighboring towns. And, um, it was so, it felt so good to me to be there, to have them kind of say, yeah, we'll, we'll help you kind of put together a plan, but also the reason why we're doing this is we're gonna look at these labs, or we know what this study says. All of that kind of information was great. I felt like I could just, you know, really rely on them. K: So when you went to see Dr. Block, did you leave the green tea oncologist behind or did you continue to work with her? H: No. She's still my oncologist. I mean, and, and I went to Dr. Block saying, Hey, I've got this great oncologist and what do you think of this plan? And he said, I think that's a great plan. And here's what, you know, we can add to it. So it was kind of nice to have kind of a second opinion all the way through, um, the first, the early years, and then also have this nutritionist and, and different people on board. K: Okay, so Dr. Block worked in collaboration with your oncologist. Would you say that? H: I would say Dr. Block, um, helped me put together the other pieces of the puzzle that I was really interested in, in terms of nutrition, supplements, he was talking about visualization, encouraging exercise, which my regular oncologist was also doing. It felt really good to have this kind of, not that they were talking a whole lot, but to have both of these people that I really trusted telling me, yeah. "Do these things." K: And they actually agreed about what these "these things" were? Wow. That's great. H: Yeah. My oncologist has always been, um, I think ahead of her time you know, in terms of recognizing what our bodies can do with proper nutrition, exercise, all of those kind of things. K: Okay. I was gonna ask you if you ever went back to her now, you know, 20 some years later and said, why the heck did you tell me to go and eat green tea? But it sounds like she has continued to be consistent in her endorsement of things like green tea and fruits and vegetables. H: Absolutely, it's been a while, but we ran a 10 K together once. She's very supportive of being active and healthy and she will always. Um, check in on all of those kind of things. What am I doing to work out? How am I eating all of that? K: Okay. Now the $10 million question, do you feel like your lifestyle choices in terms of working out and eating right, have made, and does your intuition tell you that those things have made a difference in your longevity? H: I think absolutely. I think part of it is that you're trying to build what. least at the beginning, I was trying to build the healthiest body possible so the treatments could be as effective as possible, I wanted to kind of eliminate any of the extra work that my body was maybe having to do, you know, and, and give it really great fuel. That was my whole, know, process in that was how can I make my body as efficient and effective as possible? K: Okay, so you're saying you wanted your body to be in good shape so that the treatments could be effective, so you weren't replacing the treatments with lifestyle. I think that's a really important distinction. H: God, no. Absolutely not. Not at all. And there's this other big piece, which is mindset. So for me, I was kind of like, I need to believe in everything that I'm doing, and being able to believe in these things then helps me kind of put together this whole picture. The medicine's working and it's doing its job, and I am doing my job by, you know, keeping myself as healthy as I can be. I mean, it's, it's a whole picture. K: Yeah, so Dr. Block is a, a medical doctor and he's an integrative. He has an integrative center, I think. So let me just clear clarify for the listeners who don't understand the difference between integrative and alternative, I. Because there's this really crazy amazing, um, series on Netflix right now that just came out called Apple Cider Vinegar. That is, I think, not defining these things very well. And it really strikes terror into some patients when they don't have definitions. So alternative therapy, uh, natural therapies can be offered instead of conventional medical treatment. And that's, that's what we call alternative, but integrative means it's a natural approach or a lifestyle approach that works hand in hand with conventional medical therapies, and that's what, obviously that's what you've chosen and what Dr. Block has chosen. He's not saying "you don't need chemo radiation, you don't need those oncology drugs or the hormone, suppressors." He's saying, do all of that and let's do what we can to get your body into the best shape it's ever been in so that your body is resilient. Against the negative effects of those treatment, but also receptive to the positive effects of those treatments. Okay. H: Perfectly said. K: Okay, cool. 'cause I want Dr. Block to not fall into that camp that is being, you know, criminalized--rightfully so. I think! ...by, by this, this new wave of, of truth telling in cancer where, you know, the, the Hirsch therapies in the movie, apple cider vinegar down in Mexico is, is really the Gersen plan or the Gersen therapy. And that really is an alternative. They use enemas and juicing instead of chemo and radiation Typically, I don't know what they're doing now, but typically, um, that's what they've been seen to do. And a lot of other podcasts that I've listened to that are based on health and nutrition and lifestyle will actually give. Those therapies, some airtime and some credence, and that can be really confusing for patients. So I just want patients to know that. I would not be inviting a guest on my podcast that would endorse that kind of,

    54 分钟
  5. 4月6日

    Giving Back Through Breast Cancer Advocacy

    Today's episode is part two of my advocacy series. I hope it's helpful, but if volunteerism and advocacy isn't your thing, I'll have more stories from guests coming up in the next two weeks! Subscribe on:  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

    37 分钟
  6. 3月31日

    The ABC's of Breast Cancer Advocacy

    Today I'm just talking from my own experience about some of the simpler ways to "stay in" the breast cancer community as an active advocate.    Here are some of the organizations that came up:   After Breast Cancer Diagnosis gives and trains mentors here: 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

    33 分钟
  7. 3月23日

    Good News--No Recurrence! and a New Substack

    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

    38 分钟
  8. 3月15日

    Fashion Model Gone Flat: Christine Handy

    My friend Christine joins me on this week's podcast to tell her story of explant and continued success as a model after her second "mastectomy," going flat and embracing her concave chest publicly on the runway. Her new biopic is coming out on April first in LA and she's invited us breast cancer survivors to come. Shoot me an email to find out how. kathleenmoss@protonmail.com 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

    45 分钟

评分及评论

4.8
共 5 分
9 个评分

关于

A Breast Cancer Diary is a deeply personal podcast where women tell the stories of breakthroughs, connections and paths to overcoming the challenges of Breast Cancer. It's for women who are facing decisions in the near future, as well as those who remain in this world years after diagnosis. It explores themes of body positivity, reframing of family, relationships, lifestyle, work, and it also explores recurrence, metastasis and the sacrifices that we don't normally talk about.

你可能还喜欢