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're getting so polarized and because of COVID and all the things. But, um, these young people, Ezra and Leah, they're just so inspiring to me because they are breaking down those walls and there is a, a new indivisible group popping up in the US or, or two or three every day, um, you know, or 10 or a dozen every single day. And, and every week I get on their Zoom calls and I hear them talk about all the new groups and. I hear, you know, one like this last week I heard one from my state and um, my little college town near me is, is tiny and, and yet it has a robust, very dedicated indivisible group. Uh, this morning I was at a, a, a little bit bigger suburb, uh, not too far away from me. And their indivisible group is just exploding. And all we do is work on electing new leaders, uh, long term and raising awareness of showing up in. In the public square and, and waving our signs and talking about what we're upset about and normalizing this kind of democracy because activism and sign waving is democracy. When things are going bad, this is how we work as a democracy. So I'm given so much hope in this time of, of great despair and heartache. As we see state senators being gunned down in their homes and, and national senators being thrown onto the floor by the FBI and their own states, there is something hopeful that we can do locally. We can gather with others that are concerned, that aren't burying their heads in the sand and get out there and start organizing and start raising awareness and visibility, showing people that they can be courageous. Um, they can face the fact that things are going really, really badly right now. And it's not all on Donald Trump, unfortunately, because I think he is, he is very likely to be impeached very soon based on what he's been doing, but it's not all him. There are a lot of people behind him that are doing most of the thinking, frankly, and so we have a lot of work to do to control them as well. So that's what I'll be doing over this summer and I'll be on substack updating you about things I'm learning both in breast cancer and in national affairs. I just wanted to let you know that I am, I'm taking the rest of the summer off from this podcast. 'cause I just can't pretend like this stuff isn't happening out in our streets, in our capitals. Um, that there isn't real human rights global implications to the human rights, um, ignorance that that is, is happening in our leadership as a country. So. I give you all of my love and all of my courage to go and run with. I am not in despair because I am united with others locally who are concerned and courageous. And so I encourage you to go and . Find those people in your local community who are working on this together and do what work you can too, and I will see you in the fall... or I will speak to you in the fall. If you don't watch me on YouTube. I'll speak to you here on the podcast probably in September sometime. Take care.

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 time. To get the Verzenio. And I was not too upset about that because side effects are rumored to be pretty bad, um, for some people with diarrhea. And I was just like, oh, I've got a yoga retreat. I've got all these things. Anyway, so it did finally come. Um, and I took it for two and a half days because, and I started the fluvestrant shots, um, because some of the results came in from the bi, from the biopsy. I don't know about mutations yet. Except the one thing, and this is so fascinating and weird in that my, the cancer has, um, evolved and it is no longer hormone positive. That happens. Yeah. Yeah there's a small expression of estrogen, no progesterone, and there's a small expression of HER2 now, um, and this is where I am right now. I'm in limbo because. There's a drug called enhertu, which maybe you've talked about in the past? So that's, I technically could qualify for that because of that small, HER2 low. However, there's another marker on this biopsy of all the many things that I've never heard of before. I think I have it written down, that we're still waiting to get in, it's called PDL one. I dunno what it means, but if it's over 10%, then I can be treated as triple negative. And so then that would dictate going on, taking Keytruda. So I don't, you know, like I'm still waiting. It's, so I immediately stopped Fluvestrant and, and Verzenio. So now I'm not on any treatment, which again, I'm weirdly peaceful about.  As long as you're peaceful, that's the main thing. Yeah. doesn't gimme anxiety. I'm just sort of, I, we could talk about this in depth if you want, but it just helps me double down on, on my emotional and spiritual, um, I. and, and, and peace and you know, like refocus on nutrition and, and just sort of overall health, you know, because you, weirdly, even with stage four cancer, having like good results, you can get really complacent in a lot of things... you would think it would be a constant reminder, but you just wanna, the body, I think human nature is just, um, builds wire to like, just get back to. Your old normal and it's easy to push huge trauma aside if you're feeling kind of normal.  And probably if you have good mentors that teach you that, it's not the end of the world like you Have you had good mentors in the metastatic community to tell you that? Life goes on, and actually my biggest mentor is the book Radical Remission. I'll have, you know, like I, I listened to it. We listen to it a lot, you know, like, that just reminds me that there's all sorts of different situations in the world and, and there's different ways to, to handle it. And there's an option for everybody to, to handle. I feel like healing my life in ways is more important than thinking about healing cancer can exist from a day-to-day basis in a beautiful way.  Mm. Well I wanna talk about yoga, but before we go into that, I wanted to hear a little bit about the CT scans. 'cause that was shocking to me when you said you get them every three months, that's a lot of radioactivity. Every three months. Do you get full body CT scans or is it more isolated? It's like neck area and then, um, like from here to hips And is that just since your progression or has that been since 2022? It's been since 2022. And I another thing I actually don't know. It's a good question to ask. I don't know if that protocol was trial protocol or Oh, okay. Okay. That makes sense that it would be the trail because they'd wanna see, although. Oh, maybe because it's blinded. Like if you're not taking the drug, the trial drug, then why do they need to look? But because it's blinded, you and the doctor are probably both blinded to the fact that you're, weren't on the drug, it's double blind. So then you would get the CT scans as if you were on the drug. Wow. Yes, and every three months was, you know. Blood, like my blood work was like, uh, the, the kit, you know, so it was like vials and vials and vials of blood that they sent off. So yeah, there was, there was their monitoring of that. That's like the, the side, the negative side effect of being in such a good quality trial. Uh, double-blinded is, is the best kind of trial to do. But then you get maybe over, over scanned or overtreated in some ways.  me. But then I'm also like, well then how we wouldn't have found the progression that time. You know, there's, there's pros and cons to being over scanned in a way, you know, like, because to think of like, what if it would've been six months? And I, and I was just thinking I had hip pain and I didn't go to the doctor 'cause that was the kind of person I was or something, you Yeah, you found it right away because you were having those scans. That's true. Wow. Well, that's mind blowing. It's mind blowing. It's like it's, there's, it's, that is why working on your, like mental health or your state of, of existing is the most important. Because if I let all of these confusing things derail me, then I would be frozen in everything and I would be upset about the scans, or I would be upset about not having the scans or, you know, and I'd be confused and, and I am still confused, but I, but I, um, I. know, work on letting the confusion just exist. And then I just keep going and I work on trust, you know, spiritual trust or, you know, my higher power. And that's like, that was hard to get back after the progression because it's uh, you know, it's kind of like a f you, but you know, it was just, you have to do whatever it takes in, in your own way, you know. So other than the book that you mentioned, what else has been. Guiding you or who else has been guiding you through in, in that sense, in, in terms of your, your mental game over these last few years? You know, I, I'm, yoga is definitely a big part of that. The text of yoga and the philosophies of yoga, you know, really with these things. And, you know, so I have a strong meditation practice. I follow a lot of spiritual teachers. Like I really, really love Gabby Bernstein. She's like, you know. Always really like gotten me through a lot of stuff. Listening to speakers and I went to like a Hay House conference and that was really, like one of the best experiences I ever had. You know, just seeing all these teachers that I had in real life talking and, you know, really lifting me up. That was good. And, then things like, like for example at that conference, it was in Phoenix and I just took myself to the botanical gardens one day. and I'm like, oh, this is something I love. You know, like I was just like walking around like, in wonder of beauty and nature, and I don't, you know, I live in a city, we have nature here, but like, I don't partake that much. And, and so like, you know, just discovering different, different things that are, that are healing. And, one of my prayers I guess, um, every day, or ever since this whole, since me Mets diagnosis is just being like open to receiving. Different forms of healing and knowing the discernment of whether they're for me or not. And that could mean walking in nature, or it could mean mean some weird herb, you know, like, , I'm not angry when people suggest weird stuff to me, like maybe I used to be, or like many people are because it's something going out into the world that was meant to be said to me. And I'll figure out whether it's like, thank you. And in my mind, like, I'll never touch that, or for some reason that sounds interesting, you know, I'll look into it. So I just, you know, yeah. Openness, receiving and discernment or the sort of filter of, of healing for me. I love that. I love your description of that. It's. It's not too woo woo. It's you're just talking about intuitive, uh, wisdom.  Yeah, like when you know something. And it's because, you know, the cancer world is an odd place to swirl in, you know, spiritual stuff. 'cause you're gonna come across all the different things, um, you know, alternative things and, so. I don't wanna be closed off to anything. I just wanna do what feels right. We have some really top-notch oncologists and, and I think mine is amazing. And, and he's, you know, like knows of all the trials and he's just a kind person and I love him. Did they have an integrative oncology department?  Like do they, no. And it's even getting worse. Like they just stopped their physical therapy, uh, program. Oh, no. Yeah, so that is, that, that is a big lack. And so that stuff has to be sought out yourself and paid for, you know. And a place here called, cancer rehab, and, integrative medicine, and they have acupuncture and physical therapy and exercise and various other things, you know, but it's, you know, they don't take insurance, so you have to, you have to figure that out. So how does your oncologist feel about you taking herbs and other things? It seems like it would be kind of way more intense in that setting--in the metastatic setting--for you to bring up those options to your oncologist. Yeah, while I was on the trial, I really couldn't do anything. Okay. Uh, you know, I, I'll look up something, you know, I, I, I know like on a CDK 4/6 inhibitor, I know that St. John's wart isn't, isn't. And grapefruit, you know, so like. Finding that out myself. I had a herbal coffee sort of elixir powder that had St. John's Wart. So I was like, oh, I can't take that anymore. You know, so I'm using, I'm, again, discernment and a little bit of research to just trust what's right myself, you know? I feel like too, in the metastatic setting, you almost have a little bit more authority over your life. You're, you're in that stage where you're like, Hey, my, my days are numbered and I'm going to, I'm going to claim the power over my life. Like I've seen a lot of patients act that way in the metastatic setting too. It's, it is, it's like, and, and you know, that actually is one of the factors in radical remission is, other, other people call it, it a different thing, like being the CEO of your, of your care and, um, you know, and so that either could mean standing up to your doctor and saying things or using that discernment and intuition and, some, and some self-education and knowledge and figuring out what's best. You know, it's just, but you do, you have to kind of forge your own path, I think, when you have metastatic. Definitely. Yeah. And some of the principles that you're talking about, mind body principles are really, you know, they go across the lines of, of cancer patients and your average everyday stressed out American. Like they're not something that's unique to us as cancer patients. So, but you did, in contrast to that, you did choose to start a program just for cancer patients. Tell us about that. Um, yoga, I teach yoga for cancer patients, and I actually am also certified as a, as a coach. I haven't been pursuing that, that angle as much. Because it just, you know, it's, I also am a realtor. Everything, everything's busy. Um, but also, I just need to point out, I haven't said this yet, but because of this progression, I can't actually practice yoga right now. Oh wow. I'm, I'm having a lot of grief about that. Oh, I'm sorry. Yeah. And so, I mean, I have faith that it'll come back, but it's been, but that's been really hard to not. And the, and the movement of so many yoga poses, which would be lunges and bending at the hip, um, are the exact movements that compromise the back of the pelvis. So, there's just, you know, I, yeah, there's just like, almost I can go to the gym and lift weights, know, so I'm, I'm moving and I'm like, you know, like I'm, I'm working through that. But, if I went to a class, I would be doing like probably an eighth of it or, or a 16th of it. Um, so that's been hard. But I can still teach my Yoga4cancer, so I took a, I took a yoga training in 2013 with the idea of doing this, but I never followed through of, of really, I taught a few classes, but it was difficult. when I had the metastatic diagnosis, I renewed that, that passion and vision, and I took a training that I'd always wanted to take, , called Y 4 C, yoga for Cancer, the number four. , and it's founded by this woman named And she wrote a book and she developed this training. , and it is very science backed and oncology based. Um. And all, you know, and then also community based because it's, you know, well, not every teacher actually is a yoga is a cancer survivor, but many are. And, and so I feel, so for me, that's one of the biggest aspects is creating a community in the, in the room, with me, you know, as part of a community so I did that training online and, yeah. And so now I'm teaching regularly once a month in Austin, a free class that I'm able to do thanks to a studio that donates it once a month. And a nonprofit called Moving Beyond Cancer Collaborative, who offer exercise and, and, and wellness, to cancer survivors. And so that means I get paid, which is lovely, and I get to offer it for free. So that's one of the ways where I do it. Um, and then I'm also, . Starting to teach and open to teaching at, uh, retreats and conferences like, , the Young Survival Coalition that I did in April or March. So, , and that, that I think is probably my biggest joy right now is being invited, and going to do things in big groups, sharing. ...I was, you know, dubious or. Didn't know really what a yoga training would be like online, but it was very, it's very, it's very well done. I loved it. It's very well thought out. It's, you know, the poses are all with, various side effects, and any compromises in mind. And it's also not gentle yoga. Like, it's not restorative yoga or like you, you're, you have cancer, you should just relax.... It's vinyasa yoga, it's movement. It just uses a lot of props to make the movement more accessible especially if you're in a class where you had a lot of people you really didn't know, everyone's , different things. It's nice when you do know and then you can kind of change stuff. So, there's a lot of like, I almost always have like a side effect that I'll address in a class. So you can talk about lymphedema and lymph health and we can talk about bone health and or stress and, you know, , there's just like, it's just. But everything kind of works on everything. But sometimes there'll be a class that's more focused on a particular side effect. And then there's some poses that we just don't even do, like, , most forward folds because in case someone's had like deep flap, you know, and they've got, or it doesn't have to be breast cancer, they could have another kind of cancer. They had a surgery down, you know, on their abdomen be compromised there. So many, so many factors. Yeah it's, I'm very conscious of all of the side effects and things that could, so you can actually do it when you're in treatment or right out of surgery? Okay. Okay. So you went to a separate training to do that? More accommodated kind... Okay. And how many of your, uh, yoga practitioners that are in your classes are breast cancer survivors, would you say, or do you even know? You probably don't even ask what their cancer is...? All of them, but two. Yeah, I know most of the people that, that come, uh, 'cause I, I've been in the breast cancer world for so long here in Austin, so I'm pretty active in the, in the , yeah, I think there, there's one woman that's a ovarian, two that are ovarian cancer, , survivors, but everyone else is breast cancer. It is open to others, but that's just how it is. You know, I guess folks see my posts about it, you know, it's hard to get the word, we try, but... I have a room upstairs that needs to be. Cleared out so I can make a beautiful space and teach online. I really, in my heart. Um, because then I could reach anybody, you know? And, um, I think that that would be amazing. So yeah, that's one of my goals. Yeah. I didn't even think about that until just now. Had you been to YSC before you went there as a yoga teacher? Um, I had been to one of the wellness conferences when it was here in Austin, um, actually right when I had the metastatic diagnosis, I think. Um, and maybe one before that, I can't remember. And YSC for the listeners is Young Survival... Young Survival Coalition. Is that correct? Okay, Mm-hmm. And it, so it's for folks under the age of 40, Oh, is it just women? You know. No, it's not. There was a man.  Um, uh, so I went to the wellness one and it was really, really lovely and, um. I have a lot of friends there and I, I have a friend that does the sound healing at almost all of their conferences and she lives here. Uh, and um, so she encouraged me to, apply and it was, I. It was. So yes, I got the, I, I was scheduled to teach two yoga classes, but I also got to speak about yoga to the metastatic tracks. There's a, they had, they, um, and I don't know if that's new or not, but they have, they had like a whole, like in the, you know, the choosing of your workshops or, breakouts during the day. There was a track for metastatic and that was just, you know, I think that's just so important because. You know, we are all the same. We've all had the same day of being diagnosed with breast cancer, then there's just this other level and a level of understanding that looks like that is, it makes me real emotional just to think that we're all just walking around with this diagnosis that's so heavy and so there is some conversations that really can only. Deeply be had with each other and really understood. And then there's also, we don't have to be as guarded, because I'll be honest, sometimes it, you know, I, I know that it's scary to think about me as you--I don't wanna be guarded. And I try not to be, because I think it's important to speak about everything, but it, it's in, it's in my mind sometimes a filtering, you know? And so you can just be completely unguarded about that when you're all metastatic, you know? And. Some of these women are so young, and so having that be also the sort of demographic of young people with metastatic being able to hang out together, in the different, and, and then having some of the older ones in there too, just because in it's years of living with it and, you know, so there's a lot of hope and inspiration and it is, it was special. Um, so I hope I get to, to go again and, and do it for all their things. . And teaching the yoga was really, it was probably my biggest class, so that was fun too. and it was very affirming for my, goals. You know, like you always feel insecure when you're doing something new-ish. And then to get such a great feedback from people. And so I felt good about myself afterwards. It was just lovely. So, yeah. What would you share with someone that is just slightly curious and, and being kind of led or called to, uh, a position like yours with, um, doing yoga that's accommodating for cancer patients? What would be the first step? To teach it. Yeah. I mean, I would, look up y4c.org, I think it's dot org. They're a nonprofit. You know, there's some free videos online and you can, so you can see how they use props for their classes and, you know, so see if that's something you'd wanna do. And I actually don't know if you need to be certified with 200 before getting that. I mean, if it's an actual, barrier to teaching yoga. Like the, the 200 hours is not a legal thing necessarily. There is an organization that monitors that, but like, I mean, honestly, original yoga teachers are just people that did yoga and then shared it. , You know, if it's important to the studio you might wanna work in then, then maybe, but think you can take Y4C. It's a, it's a 75 hour. I think you can take it without a 200. I'm not entirely sure. That's something to look into. but I would encourage any, you know, anyone to look into it because it should, it should be everywhere. You know, it would be lovely if it was offered everywhere, at every town and easily offered, at every studio it's, it's hard to get a class established. Um, you know, just 'cause it's hard to get the word out. I don't, I don't know. I don't know why it is.  Well, cancer has been kind of secretive. I feel like, you know, can't the cancer diagnosis up until our time, up until this generation, we've been really secretive about, especially breast cancer. I think just shame and, uh, privacy being the norm,  Yes, so, true because if you go to a class that's called that you're probably gonna talk about it. And so maybe some people feel reserved too. And that's kind of one of the things I also wanna change. You know, I want people to, I wanna talk about it. Like we, and that's another thing in Y4C training is we say cancer all the time. We'll say like, yeah, cancer sucks. And so like, I'm so glad we're here to like, you know. Do something for ourselves. And so it's not, it's not, we don't just sort of come in and like, ignore cancer and just do yoga. It's like, it's the conversation. It's open and I really like that. And, and yeah, maybe people feel shy, but on the other hand it's would be so. It's empowering because you, I understand feeling shy going into a regular yoga class and going up to the teacher and saying, I did this because there was no yoga for cancer. And saying, look, I just finished cancer treatment, so uh, I'm gonna be doing this in the back of the room. Or if, you know, you know, I can't do this. And I was really outspoken about myself, but that's. Not the norm. You know, many people would feel a lot of shame and embarrassment to like make a spectacle. It's not really a spectacle, but, you know, make something of themselves to go up and stand out like that so that they can have an accommodation in a regular class. So, um, you know, if they can come to a yoga for cancer class and they don't have that, and then maybe they'll learn some tricks and confidence and can just go into a regular class and take care of themselves in the, within that, that regular class. Which is what I had to teach myself to do. Mm-hmm. I can relate to that as someone that goes to Pilates who has lots of neck and arthritis kind of problems. I have to do half of the things differently when I show up and like, it just disobey the, the commands of the teacher. And that takes some balls! There's some yoga classes that, that feel like that you have to do that, you know, and, and, or people think that, you know. So to create a a, an environment where everyone feels comfortable to advocate for themselves, um, or to learn how to then advocate for themselves in the, in another type of class, I think is really great and important. Yeah. Yeah. So you, you spoke a little bit about some of the benefits, mind body benefits, um, but what would you say is like the crystallized both personal and maybe clinical benefit from your perspective of what you do in the yoga class? Yeah. So, um, there is a, I'm gonna not remember numbers, but there is a recommendation from the, I think American Cancer Society about amount of minutes of exercise that,, is helpful for preventing, Recurrence or cancer, you know, the, the cancer survivor should do. And it's vinyasa, a movement, yoga class counts towards that. So getting your movement in is one of the just main benefits of being there. And so, and so physically just moving, building strength and building bone density because it is a, , many of the poses are weightbearing. And so you're building bone density, which is a huge concern for, um, many breast cancer survivors. And, um, helping your lymphatic system with movement, , because the lymph system doesn't pump itself. And so movement is the only way to, to get it going. And yoga is incredible for that. And then, you know, emotionally it is, you know, the, the breathing and the being, the body awareness. You know, there's a meditation before and just the, the, the words that, that a teacher can use. So with bringing in some sort of, I don't know, philosophies or thought processes of like self-love and, and self-compassion and, and, you know. Uh, being steady through this chaos of cancer and all this stuff, all the, all those things can, can bring you calm and lower and, they actually lower your nervous system, you know, and, and simulate the vagus nerve, which is the calming, , and lower your cortisol and all that stuff. And so that can help with sleep, which then goes back to physical, you know, there's just, it's sort of, it's all intertwined--there's just like, unless you have like a big hole in your pelvis, like me, there's no non-benefits for it. Um, and even I could figure out something, you know, like maybe I need to spend some time on my mat and like make up a, a series of things that I can do that's comfortable right now. How did you find your first couple of, , . Uh, I, I don't know what to, I called them practitioners before, but that's not probably the students. Thank you. Okay. How did you find them? Did you advertise or put a Facebook group up? Yeah, I, um, I, I have a Facebook group and then I have my Instagram like glitter every day. Um, and the, the, so the, and the Moving Beyond Cancer Collaborative, I'm friends with all those people 'cause I've been like going to some of their classes and having acupuncture with them. And, and so they promote it too, and they put 'em in their newsletters. But it's been mostly, mostly just sort of like personal outreach. Um, you know, and I, I, I, to brainstorm like it, I tried, I had flyers up at Texas Oncology in my, at my office for a while, and people did, no one came from it, but people would say, I saw your picture. So, you know, like, I haven't done that. I need to, that would be a great thing, is to put more flyers up. I find more places to put flyers up. I mean, , that's somewhere where I probably could use a little bit of, uh, more brainstorming and more effort is finding the people. Uh, I just am like, I, I said, I'm so well connected in the, the survivorship world here with support groups. We also have a group called, uh, breast Cancer Resource Center of Austin. And, you know, I have shared in our Facebook groups there, , and. They might have me actually, we have a one day metastatic retreat every year, and I'm hoping that I'll teach yoga at that, this coming year and yeah, word, word of mouth spreading around to my people. That's so great. Yeah. It's, it's inspiring to see little sprouts of healing open and, and start and grow all over our country, you know, just to be turned onto these little movements that means so much to each individual patient that's a part of them. So thank you for what you're doing. Oh, you are welcome. Yeah, I wanna spread it. I've even thought about asking if I could teach something at San Antonio. Do you go to San Antonio I do. Yeah, yeah, of the patient advocates are survivors, so like I was thinking about, I don't know who to reach out to, but reaching out for one in one of those big rooms to teach yoga. Yeah, the, the Advocate lounge might be too crowded, but they might be able to get another room. I mean, the rooms are empty half the time. It's such a huge convention center. Yeah, that's such a great idea. And we need that. We need to be together even more than we already are when we're having lunch and networking. 'cause not all of us really love to be verbally networking all the time. Especially like, you know, introverts, you're there to learn and so you're saving all of your energy, you're physical energy just to soak up all the knowledge. And so for me it's like I have to limit my networking time, or I'll just like fall flat on the floor of exhaustion. Or if you're one of the people that has a booth... Which I am. Yeah. I have to limit that too. But yeah, yoga would be restorative. Yeah. Yeah. I'm gonna, I'll find an email of someone and, and see what I can do! I'll help you. I'll help you do that. Yeah, that would be good. Thank you. Adds a whole other element to like the in, you know, the integrative part, like bringing some awareness. I mean, you know, maybe a doctor would've come in and go as well?  Oh, I'd love that. We'd see which doctors are open to all things, you know, like you just wanna find those doctors so badly sometimes. Yeah. The allies. Yeah. Cool. Well, I always ask my interviewees if they have, uh, a little bit of advice around. What they would want to have known at the beginning of their journey, either for you, either at the very beginning or at the time of your recurrence with Mets. Uh, what would you like to tell your younger self now if you could? Oh God. That's really heavy because I wanna kind of go back to my first diagnosis, but I don't want it to be a bunch of regrets, you know? I would've gotten metastatic, if I'd done anything different. Like, you know, like I can't, I can't know that I do. I think. Both times I would just like, not like a negative warning, but just like a, like, um, bit more education or knowledge on the possibilities of cancer coming back or changing, you know, like I think it's good to be naive in some ways because otherwise you can't live in fear. But I think there's, there's just, I think the conversation around the possibility of. Of recurrence is, is, it could, could be done better with, I don't know how yet, because it is scary. But like, you know, talk about it, about the possibilities and reality of it. Not for everyone, I'm not scaring anyone, but that it is, you know, something that, that, that is, just be more talked about somehow. Well, and just your being here is that bridge right there. Like just you're telling your story, I think is such a powerful movement in that direction. Like for me, I never. I met anyone with Mets, and I was, I became scared of mets because I, it was such a, like foreign concept to me. I would hear people refer to it in podcasts and, you know, different things. Um. But then when meeting someone with Mets who has a life, who is not living in fear, who is confidently going forward and doing their work in the world like yourself, is what we need to see. You know? Okay. That's possible and that's possible. Like we, we could get that diagnosis, which is scary, but also we can live a really powerful life with it. because I would say ev I had some friends with Mets, and I'm a sh appalled, not appalled, shocked at how much, I wasn't even aware of what was going on with them. Like, the terminologies and things, you know, because probably I didn't want to, you know, and to, 'cause I would think, oh, if that happened to me, I would just be devastated. That would just be it. I'd be like, like, there's just no way I could exist. You know, like, so I didn't think about it because that's how I thought about it. And this is kind of sad, but one of my, one of my most beautiful, amazing, best friends passed away in 2021. And I recently did something kind of odd in that I looked at her name on Facebook in the Mets group that I'm in now and saw all of her old posts, you know, which I weren't privy to at the time 'cause I wasn't in that group then. So I saw her use these terms that I'm so, so familiar with now, and I saw her talk about like a drug and then asking maybe a side effect. And I'm like, I had no idea that this was going on with her. I didn't know she had these thoughts and these questions and these, you know, this knowledge. And I didn't even actually know where her mets were, for God's sakes. I call her my best friend, you know? Um. Because I just didn't wanna know, and I just was like, you know, I'd rather just be ladi da. Are we, are we still able to hang out? You know, like, like that's just my protect protector, which I think we all have. And, and, and I, I regret that I would've loved to have sat and talked with her about all that stuff and learned or listened and been there more for her, you know, not, but maybe she also protected me from it because I didn't have mets like I do with other, know. Early stage people, um, maybe she didn't want to scare me and you know, 'cause she, she would wanna say, this isn't gonna happen to you, Nannette, or something, you know, so it was just, it was really an interesting moment to like, go back and look back at all those posts from her and see what she was going through parallel to when I knew her. And now that I'm going through those things, you know, Yep, yep. It's amazing that you can access that. It's a gift that you can access that hopefully it's not too, negative. No, it was hard, but it was also a gift. It was beautiful. You Yeah. it was, and it's been this many years that I could've even done it. Like I, you know, I still don't like to look at our texts. You know, um, and that's the whole other is like dealing with grief of losing friends. 'cause that happens. Yeah. so, but yeah, I think that's it. I think it's the conversation about, about it. As a reality and to not be so afraid of it so that you can continue to live, not fearing getting stage four, but not ignoring it. Yeah, I think we need, and we'll probably find more language around these kinds of conversation. Um. Because even young people nowadays, some of them do like to re remain anonymous and private about their diagnosis details, but more and more of us in our forties and fifties and, and certainly folks who are younger, are completely unabashed and out in the open wanting all the help and support they can get. And so we need to know how to ask permission, to get that personal with folks and we, we probably haven't built those words or tools or language yet. That's, that is actually it. We just haven't built it yet, but it, it will come. And, um, you know, um, because I, I just wanna sort of touch back on something when I talk about like, people being aware of it and not being afraid of it, and it, this isn't to like teach any sort of like prevention methods. Like, oh, you should be aware of it so that you can live like this to not get it because that. People can do X and get it and not get it, and people can do Y and get it and not get it. You know? Not the reason to, to be aware of it is a reality to like, try and make sure you don't get it. I agree. Yeah. 'cause that, that, that's your own personal journey. You wanna, you wanna do the things to prevent it, that you think work, do them because that'll make you happy. You know, as long as you're not doing them within that fear, know? Oh, if I, if I have one piece of chocolate, you know, my life is ruined. You know, there's, there's, there's the balance, a really deep, but that's my whole that's my whole point for that. It's just to, to, to be able to live your life freely and to know how to handle things and wonder if they happen. Yep. And with the knowledge, I'll just say this too, like personally, I believe that science has not found any conclusive ways, you know, obviously science hasn't, but, um, also the alternative medicine industry or community hasn't found any viable ways to avoid getting recurrence or mets. So, there's no way to, there's no way to capture any truth because the truth hasn't been found. So there's no secret out there that's, that's hiding from the majority of us. Mets. People have said this. I don't think, I don't, I don't pretty sure I didn't make it up, but one of the things that. Definitely like is important to me or the wording I use and it, and it should, I would like this for everybody is that it's, and I might have said it earlier, but it's healing my life more than healing cancer. You know, it's like, so if you can. have to try to do that when you get a mets diagnosis. Mm-hmm. That would be great. Find your purpose and, you know, and, and, and live these things. Like, like, like the sort of example is like, you know, the dresses that still have tags on them. know, like, what if I died before I wore them? You know, like, like just, that's just a trivial--you know, it's like, like every day is fancy or every day is And it's, it's, it's. It's so cliche and it's so true. Um, so yeah. Well, thank you Nanette. I really value you coming and telling your story while you're in the middle of this difficult mystery. Uh, my friend Danyel also did this the same. She came on right after her Mets diagnosis and it was really, really emotional and we didn't get too deep into the emotion, but I know the emotion is there and I feel it with you and I admire you for swimming through it in, in public like this. Thank you. Yeah, I hadn't never envisioned that that's something that I would do. And especially in this current, yeah. Like I'm still in the confusion mystery. I don't, I don't know. I don't know what my treatment will be Yeah. Yeah. So, but I'm here. Yeah. I'm here to share my heart! Well, thank you and, and I look forward to. Uh, chatting with you this, this fall about how things go in Austin and you're gonna try to table at your local walks and we'll be in touch about that, which is always fun. Yeah, it's gonna be, it'll be powerful. Tabling has been so amazing. I just, I just can't get over how good it is to have conversations, not just to be seen by each other at a breast cancer walk, but to talk with those who really need to talk about their bodies  Yeah, because they do--at the walks they come up and talk to you, and it's a brief thing, like, oh, I, I'm flat too. I just don't, I could never walk like that, you know? Now they can actually come up to and stay for a minute, have a real conversation.  Yes, they have permission to have a conversation, and it's been so amazing the conversations that we've had, and I know that you're gonna be so great at that. So thank you for that. You are welcome. Talk to you then. Yeah. Sweet. All right.

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. Um, whatever it is, eating more vegetables, eating more fruits, eating more whole foods and less, um, dirty meats and dairy products maybe. I would just encourage you to choose some small thing that you can do that you've decided is warranted. Whether it's something you've read or a doctor's told you, um, do some small thing, not believing that it's gonna cure you or make everything get better, but that it will make a difference. And feeling empowered in that process, I think makes a huge difference for all of us. There is one other movie that just came out on Netflix that I was thinking about talking about 'cause I just saw it today. Um, having just lost my dad, I'm really interested in some of the choices that we make around the time of death. And one of the things I wanna do sometime in the next year is to take a course on end of life doula/end of life planning, because I have friends that have been diagnosed with stage four and I wanna help them--people like Danyel that I would like to help plan the last days and weeks and months of their life. Um, I'm, I feel equipped to do that. And so I'm always interested in movies that talk about death and explore and watch death and few movies do this very well. Like my friend Christine Handy was saying in, in my interview with her, most movies about cancer patients will show them getting sick and then dying immediately, and boom, that's the end of the movie or that's the end of that scene or that person's character role in, in whatever story it is. They don't really address it. They don't. Stretch it out and watch it because it's uncomfortable, it's painful to watch. And this movie that just came out on Netflix called The Room Next Door with Julianne Moore. And Tilda Swinton is a really good example of that. It's not a comfortable movie to watch. It is the least entertaining movie that you've probably ever seen. It's an awkward, drawn out movie with lots of silent parts and hesitations, which as Americans were pretty uncomfortable with, I think. But if you're interested in the subject of death and especially euthanasia, I think that it's a really interesting movie to watch. I didn't love the acting. I'm not a huge fan of Tilda Swinton. I just don't love her acting for some reason. So I don't recommend it as an art piece or something to admire, but just something to. Draw your thoughts out on death and as a cancer patient, I think we can be less afraid of recurrence or stage four diagnoses if we are willing to ask some of the harder questions about what we would do if we were diagnosed and if we were facing death. And I think this movie in particular really addresses it well. I think it gives death less of a sting. It makes it less of a threat or less scary. Of a topic to think about. If we can think about all of the options, all the ways that we can deal with the pain or not deal with the pain. Um, with my dad having passed away just a few days ago, I really faced this myself, um, in terms of just being really insistent that he not be given measures to prolong his life. He was already psychologically suffering from dementia. And it was really important to us as a family not to prolong that suffering. And yet in the moment you always feel a little bit strange telling a doctor that the doctor we were dealing with was really great at supporting us through that decision and not making it awkward, but it's really good to practice. I got to practice with my mom and now I've gotten to practice with my dad, and that makes me more ready to be able to make those kinds of decisions, awkward as they are, socially hard as they are, for myself at some point. If you're interested in those topics, if it's not too scary for you, if you're in a good space, not too stressed out by the political situation right now, then you might check out that movie on Netflix just as an educational opportunity. I just love Julianne Moore. She really takes on roles that explore these bold subjects a lot, so I appreciate her work in that respect. So I will probably be away for a couple of weeks dealing with my family business. And if you'd like to be in touch with me, I am on Substack. That's the best way to hear from me every week. And, my substack is called abreastcancerdiary.substack.com. You can either subscribe through email or if you get the app, you can subscribe on the app and then check it out on the app and not get an email, and I will talk to you soon. Take care friends.

My guest Heather has been thriving with metastatic breast cancer for nearly 27 years! How did she do it? She feels that it's a combination of things--not necessarily the trial on stem cell therapy combined with high-dose chemo. She feels that her long-term drug, Faslodex, as well as lifestyle choices around nutrition, exercise and mindset are key in her success. Heather's web site is: https://heatherjose.com/ and her podcast is on YouTube at: https://www.youtube.com/@ImStillHereCancer/videos Kathleen does zoom based peer navigation/mentoring sessions now. Schedule a session here for a sliding scale of $35 to $95 per hour long session: https://kathleenmoss.simplybook.me/ Transcript: Today's podcast guest is Heather Jose. She's from Mount Pleasant, Michigan, and she's an occupational therapist, and the most remarkable thing to know about her is that she's a 26 year post metastatic breast cancer survivor and thriver. And that's a main reason why I have her on the podcast today. I've never met anyone that has lived that long and thrived that long after a metastatic diagnosis. I'm so excited to have you, Heather. H: Thank you. It's great to be here. K: Thanks for coming on. So a huge part of your story is, well, you're, you're a podcaster too, and you tell your story in an informal YouTube and podcast setting. Uh, there in your home with your husband usually, and sometimes your kids are, are joining to tell their part of your story. Um, so people can learn about your entire journey just by looking at back episodes of your podcast. But. I wanna hear what you feel you did differently than maybe some of the people you meet who have had metastatic breast cancer and how your path was maybe a little bit different than the conventional path after being diagnosed. Oh. Start out by telling us if you had an early diagnosis before your metastatic diagnosis. H: No, I was diagnosed de novo, so stage four from the start. Um. I think, and I, looking back, I was 26 when it happened, and I think some of what worked for me was being a little bit naive about a lot of things, right? I look at, my daughter is now 27 and doing great at life, but you know, there's a lot that you learn over the course of time, right? So I think it helped me to be able to just kind of go into this going, well, okay, how do I, how do I stay here? How do I figure this out without knowing, I don't know, even the gravity of all of it. K: Sure. Absolutely. And did you, how many months or years did you stay with just conventional treatment before branching out into integrative treatment? H: Well, the, my first doctor told me to get my affairs in order, I stayed with him for about 20 minutes and we were done forever. The, the next oncologist that I talked to was the next day. She told me even on that phone call, "drink some green tea, eat some fruits and vegetables and we'll start killing cancer on Monday." And it was so empowering, like, SO empowering. Here's a oncologist from the University of Michigan who you know, is renowned in her field and, and, she's telling me like, go get some green tea and it was the best thing ever for me. And that of course kind of was like, okay, what can I do? so right from there we started to do some research. And when I say we, I should say my mom, because I knew early on that I could not handle all the information coming in. I knew that it, I just needed to kind of protect my mind and kinda keep myself in a bubble. So she started doing, some exploration of, you know, what else is available that could help kind of bring pieces, of knowledge to the table. Because even at that time, and I, I know nutrition's tricky anyway, and I know you've talked about some of this, right? But you'll, somebody will tell you "a calorie is a calorie" and somebody else will say, "no, you have to do this." And we wanted somebody who was like, no, what we would like you to do is this, and the reason why is because the research has shown the way to go. So we actually found, um, an integrative oncologist early on. I, I was seeing him, I was diagnosed in December and I went to see him in February. K: And this is Dr. Block. H: This is Dr. Keith Block. So, yeah, and he's, um, he's in Skokie, Illinois now. He was in Evanston at the time, but they're just neighboring towns. And, um, it was so, it felt so good to me to be there, to have them kind of say, yeah, we'll, we'll help you kind of put together a plan, but also the reason why we're doing this is we're gonna look at these labs, or we know what this study says. All of that kind of information was great. I felt like I could just, you know, really rely on them. K: So when you went to see Dr. Block, did you leave the green tea oncologist behind or did you continue to work with her? H: No. She's still my oncologist. I mean, and, and I went to Dr. Block saying, Hey, I've got this great oncologist and what do you think of this plan? And he said, I think that's a great plan. And here's what, you know, we can add to it. So it was kind of nice to have kind of a second opinion all the way through, um, the first, the early years, and then also have this nutritionist and, and different people on board. K: Okay, so Dr. Block worked in collaboration with your oncologist. Would you say that? H: I would say Dr. Block, um, helped me put together the other pieces of the puzzle that I was really interested in, in terms of nutrition, supplements, he was talking about visualization, encouraging exercise, which my regular oncologist was also doing. It felt really good to have this kind of, not that they were talking a whole lot, but to have both of these people that I really trusted telling me, yeah. "Do these things." K: And they actually agreed about what these "these things" were? Wow. That's great. H: Yeah. My oncologist has always been, um, I think ahead of her time you know, in terms of recognizing what our bodies can do with proper nutrition, exercise, all of those kind of things. K: Okay. I was gonna ask you if you ever went back to her now, you know, 20 some years later and said, why the heck did you tell me to go and eat green tea? But it sounds like she has continued to be consistent in her endorsement of things like green tea and fruits and vegetables. H: Absolutely, it's been a while, but we ran a 10 K together once. She's very supportive of being active and healthy and she will always. Um, check in on all of those kind of things. What am I doing to work out? How am I eating all of that? K: Okay. Now the $10 million question, do you feel like your lifestyle choices in terms of working out and eating right, have made, and does your intuition tell you that those things have made a difference in your longevity? H: I think absolutely. I think part of it is that you're trying to build what. least at the beginning, I was trying to build the healthiest body possible so the treatments could be as effective as possible, I wanted to kind of eliminate any of the extra work that my body was maybe having to do, you know, and, and give it really great fuel. That was my whole, know, process in that was how can I make my body as efficient and effective as possible? K: Okay, so you're saying you wanted your body to be in good shape so that the treatments could be effective, so you weren't replacing the treatments with lifestyle. I think that's a really important distinction. H: God, no. Absolutely not. Not at all. And there's this other big piece, which is mindset. So for me, I was kind of like, I need to believe in everything that I'm doing, and being able to believe in these things then helps me kind of put together this whole picture. The medicine's working and it's doing its job, and I am doing my job by, you know, keeping myself as healthy as I can be. I mean, it's, it's a whole picture. K: Yeah, so Dr. Block is a, a medical doctor and he's an integrative. He has an integrative center, I think. So let me just clear clarify for the listeners who don't understand the difference between integrative and alternative, I. Because there's this really crazy amazing, um, series on Netflix right now that just came out called Apple Cider Vinegar. That is, I think, not defining these things very well. And it really strikes terror into some patients when they don't have definitions. So alternative therapy, uh, natural therapies can be offered instead of conventional medical treatment. And that's, that's what we call alternative, but integrative means it's a natural approach or a lifestyle approach that works hand in hand with conventional medical therapies, and that's what, obviously that's what you've chosen and what Dr. Block has chosen. He's not saying "you don't need chemo radiation, you don't need those oncology drugs or the hormone, suppressors." He's saying, do all of that and let's do what we can to get your body into the best shape it's ever been in so that your body is resilient. Against the negative effects of those treatment, but also receptive to the positive effects of those treatments. Okay. H: Perfectly said. K: Okay, cool. 'cause I want Dr. Block to not fall into that camp that is being, you know, criminalized--rightfully so. I think! ...by, by this, this new wave of, of truth telling in cancer where, you know, the, the Hirsch therapies in the movie, apple cider vinegar down in Mexico is, is really the Gersen plan or the Gersen therapy. And that really is an alternative. They use enemas and juicing instead of chemo and radiation Typically, I don't know what they're doing now, but typically, um, that's what they've been seen to do. And a lot of other podcasts that I've listened to that are based on health and nutrition and lifestyle will actually give. Those therapies, some airtime and some credence, and that can be really confusing for patients. So I just want patients to know that. I would not be inviting a guest on my podcast that would endorse that kind of, um, miracle Cure kind of thinking. And, and Heather is the crystallized, you know, perfect guest to endorse the. What we call integrative, which most cancer centers across the country right now are embracing integrative therapies. Things like, you know, those complimentary therapies like acupuncture and massage and nutrition and activity, physical activity. So cool that you can tell that story well and tell such a successful story. Um, while, while telling that, but tell us about what kind of traditional or conventional treatments you did take part in. I know you did a clinical trial, uh, maybe you could tell us a little bit about that? H: Yeah, so again, I was diagnosed in 1998, so this is, and things have changed a lot during that time and I think it's important to state that because sometimes people come to me and they want, they latch onto one part of my treatment. Treatment as if it was the thing that was everything for me. And I don't really, I don't believe that that's the case, but I started with four rounds of chemotherapy. Um, I. had a five cm tumor. Um, by the end of that treatment, my tumor was undetectable, but we still had a lot of things going on. And the next thing was that I, um, I did a double stem cell transplant. So a double stem cell transplant was a clinical trial. this is something that people will sometimes say, how do I get that? How do I get that? my answer to that is that what was. Proven through the research is that there are better ways to address cancer than a stem cell transplant. Like this is high dose chemotherapy, that not everybody comes through . They take you down to kind of zero, and then hope that your trans, your stem cells will regenerate and give you back what you need. Um. It's just, it, it was found that it wasn't the most effective way to go. And right on the heels of all that was targeted therapy and all of these things, these drugs that are so much more effective and also, uh, less dangerous in terms of side effects. So. Um, after the stem cell, I did a double mastectomy, and after the double mastectomy I did radiation, which was kind of my, my year of treatment. And then from there, went on to start, drugs, like I started on tamoxifen, and it was also on a bone strengthener because of the bone mets. K: Sure. Now, just to clarify your clinical trial, it sounds to me like from what you're saying you were given stem cell therapy in cooperation with high dose chemotherapy and in the thought that the stem cell therapy would help your body to be more, um, your body would recover better from the trauma of high dose chemotherapy. H: They use them because. In traditional chemotherapy, they're, you know, they're constantly monitoring, you know, what those, those levels are. And with, without, um, the stem cell, they, the thought was they could bring all of the levels down even farther and maybe kill more or any lurking cancer cells K: And they did that through a more intensive chemo regimen or through some other, okay, gotcha. Okay. So you endured more chemotherapy than the average patient did at that time, and probably today as well. And the way that you recovered from that was the stem cell treatment. Gotcha. Okay. H: I mean, the stem cells are necessary for you to be able to then come back to life. Yeah. K: I think most people listening to your podcast and to your story will then say, gimme some stem cell treatment please. So how do you respond to that? H: I just, I enduring, it was really hard. I mean, I never, I, the closest I came to death was during that time. Also the cancer was undetectable before we started it. Right. And I've been stable on a medicine that is easy for me to endure since 2004 Is it that the one piece? I just don't believe that you know. K: Okay. What's the one medicine you've been on all this time? H: Faslodex, which is also called fulvestrant. Yep. K: Tell us about that one and, and how you feel while you're on it. H: Yeah, so I started on that in 2004. We kind of did Tamoxifen for a couple years, had a slight, you know, change in the bones. I've never had anything, big happen. But, , so Tamoxifen went to Arimidex for a couple of years, and then same type of situation. My doctor said, Hey, there's this new drug, it's called, you know Faslodex, I'd like to try it. And I was like, okay, it's. Um, at the time it was one injection, um, and just into your hips, and I tolerated it super well. Um. Because I started it so early, later, once it went through all of the testing became a, a double dose of that. And I've been on it so long, we're now back to a single dose. Kind of like, what, you know, we've talked about, because I've been stable for 21 years now, or 22 years now. It's been, it is the question of, you know, what. What do we, how do we continue this journey? the medicine necessary? Um, you know, what does that look like? So, um, the, the problem with the faslodex for me, after so many years of injections is, uh, some scar tissue in my hip or my lower back area, to be able to do one injection versus two just really helps me from a comfort level, um, you know, endure that. And I felt very comfortable with that because I was on one dose a long time ago. K: And what other side effects have there been any other immediate side effects? H: I am not a big side effect person. I'll be honest, I don't really, I even from the very start of things, I've always kind of said, "if there's side effects you need to, like, please tell my husband or my mom or something so I can kind of like bounce things off of them if I'm feeling something." But I know how my brain works and I don't wanna manifest things you know, I don't need to. K: Oh, okay. So you're saying you never looked into the side effects and therefore you never experienced them. Is that what you're saying? H: That's why I'm saying is, I mean I learn about side effects sometimes because they happen, talk about from a bone standpoint, the Biphosphonate I was on, there's also things that, like with a Faslodex, it's super easy for me to tolerate. I'm sure there are some side effects that. People talk about, but for me it's in and out. I actually got my treatment today. Um, there's no, just, easy and I appreciate that, K: Yeah. Yeah, it's a very different drug. So did you get onto Faslodex because of a clinical trial initially? H: It wasn't actually a clinical trial, but it, it just come out like, so they were still working on dosing at that. So, yeah. K: So it sounds like you, you're giving it five stars in terms of the treatment. H: I mean, anybody who can walk in and out of a cancer center you know, maximum 10 minutes, that's, I think that's five stars, so, I mean, you know, maybe I turn on my heated seats on the way home. Like, okay, that's, that's good. Drink some extra water. I mean, okay. K: Brilliant. No, I love it. So why did you stop taking Tamoxifen? H: Uh, because there was a little bit of a change, so we just moved from like a, a change in the bone--a little bit of progression. has always been like, we're moving to the next thing, K: Oh, you mean there was a cancer progression in your bones? Is that what you're saying? Okay. So it wasn't responding to Tamoxifen. Okay. H: Yeah. I mean, we can talk about all that too, because over the years I've now learned to do, to do bone biopsies. And I've had two bone biopsies that have come back clear. So it's hard with bone changes to definitely say this is, um, you know, the cancer. Right. So especially when it's in little things. Again, I'm not an expert on reading scans by any means... K: Yeah. No, that's good. I think that just an overview is good. I, I don't wanna get into too much medical stuff 'cause we're, I'm not a medical person, so I can't defend and define those things. Um, but I do wanna ask you about the double mastectomy because most, almost all patients who are diagnosed de novo, like were, do not get a double mastectomy, even if they want one. So what happened in your case that made that different? H: Well, that is, I would consider that a new way of thinking. So that was not the protocol in the late nineties. That has changed since then. And I, I think there's a lot of, um, I understand why women sometimes are scared because they don't have a double mastectomy, but I also feel like being able to keep your breast is really, um, invasive a great thing. K: Yeah, so you, it sounds like maybe miss your breasts and, and feel a little bit of regret about that. H: Yeah. I mean, I can't, I can't regret something that I didn't have the opportunity to make a decision on. Right. But I didn't realize the impact it would have on me, the loss of my breast in terms of, I. image, uh, sexual pleasure. All of these things were, there's a big piece of me that is missing. of course my first priority is to be here. But I think by just, you know, have, when we have these, double mastectomies and you know, do reconstruction, it's not like they're the same. They're different. K: Do you wanna talk a little bit more about that? How is, how is it different? I know you went a few years without breasts, so you were flat for three years. H: Yeah, and I'll talk about that too, like, so when we did my double mastectomy at the time. I was offered reconstruction and my whole thing was like, no, uh, I know it's, I mean, I thought, at least at that time, I was like, this is a procedure that can be quite painful. There's a lot of pieces to it. And so my only thing, I just wanted to be healthy as soon as possible. And I was like, I don't mind being flat. That's, that was fine with me, and honestly. was fine with it. One of the reasons that I chose to have, uh, reconstruction was because. It can, and it can be very painful to have just kind of your sternum exposed. I had young children at the time and like that head coming back into a couple times, sent me skyrocketing. And so I was like, I am willing to look into this. And I was also a couple of years out and feeling really good. I felt feeling strong enough to be able to take it on. 'cause I knew it was a big and it, it was a big procedure, so... K: So what were some of the ways that it was a big, a big deal? H: The LAT flap. So muscle from the back come, come around to the front on the left side and then just expansion on the right. Um. It just, it was painful and I think the results were okay. When you look down and I have a shirt on, it looks like I have breasts, but nothing more. I mean, I had said to my husband a long time ago, like, please just don't even, don't pretend to like them. Don't pretend like it just doesn't. That's that part of my body is gone. is a different or something. K: Were you more comfortable with the flatness being touched or? H: No, I didn't feel like I, again, I don't know if I gave that enough time over now that it'd be many, many, many years. I think it always felt very tender to me. Um, but um, yeah, I. I was just surprised by all of that. And also there's no talk about it, right? When we're, when those things are happening, it's all very much like, "oh, but we can do a reconstruction and you'll look just like this and you can choose what size you wanna be." K: And it's all like, a positive thing. H: And it, but it, there's no talk about the fact that, you know, it won't feel the same and your body won't interpret it the same. So. K: So you have 23 years. Did you get, so you got a lat flap you said on one side, and then did you get an implant on the other side? H: I have implants on both, on both sides--the LAT, the pocket on the left side with a LAT Flap. K: Oh, okay. So have you in all of your years, had a replacement of the implants? H: I did. I had 'em replaced a couple of years ago. K: Oh, good. Okay. And had they broken down at all in in that long time? No. They haven't. K: So you made it 20 years without them breaking down, it sounds like. H: Yeah. And the the side without the lat flap had kind of fallen a little bit. Like it was just a little bit lower. Um, but it was still fine. I do have saline implants also. I didn't do silicone, same as the new ones or the first time around. K: Oh, okay. Okay. So saline maybe are longer lasting than silicone. H: I don't know it so many things, you know, things come and go, but there was talk, a lot of talk about silicone implants at the time that I first did the surgery, and I want to be even having to consider whether or not it was safe or whatever. And so I did saline. K: All right. And then you said the younger children, I mean, sounds like you're still pretty protective of your, your breast, your chest area after getting reconstruction. But did it change your relationship with your kids or did that, did that have the desired effect? H: Um, I dunno if I've ever really thought about that. I think it's, I. The reconstruction had the desired effect of, I, yeah, I don't know in terms of, it made me able to do the things I wanted to do, I guess, and not have to consider necessarily. I. Clothing choices in the same way. There is some of that too, and again, I feel so old saying this, but like, you know, clothing changes and at times it's more fitted and at times it's not. And, it might've been all of those things, but... K: Well, and you were 26 when this first happened to you, and now you know, you and I are the same age, and I, I mean, looking at your story, from my perspective, I've just now given up my breasts after having them for, you know. 40 years or whatever, and you were just getting into the place where, as a woman, we become comfortable in our bodies for the first time. H: I didn't, and again, I just didn't even understand that, like the pleasure that I did get from them in a sexual encounter or any of that kinda stuff. I didn't, I, of that was talked about. You know, wouldn't have changed, uh, the protocol at the time. I, I do understand. Or I, I am, I guess in some ways glad that there is some preservation of breast. I just don't think that it's very easy for women to recognize why, you know what I mean? I also understand the, initial urge of get 'em, get it out, get it out, you know, kind of K: So it sounds like you're supportive of our current standard of care, which says women need to keep their breasts if they're de novo. H: Well, I think I recognize. Uh, probably where some of that came from. I also, in speaking for women who are stage four, do want them to feel like they have access to the highest level of care so hoping and assuming that the research has been done that really, by preserving breasts, it's not changing outcomes. K: Yeah. Yeah, it seems a little bit illogical. I was talking to Leslie, another podcast, uh, guest about this who's, who's lived quite a few years also past metastatic diagnosis, and it does make sense to me that you would think that the scans were less. Likely to catch something if you have all this breast tissue, especially if it's dense breast tissue. Um, but I guess the thinking is that you're gonna catch it if it's systemic, you're gonna catch it growing in multiple places on the scans, even if you didn't catch it in the breast. Um, there, there are other ways to catch it in other places, but yeah, it does seem like you're kind of living with the enemy still when you have the breasts still. H: that's a great way to put it. Yeah. K: And you were married when you were first diagnosed? Yeah. H: I mean, again, some of that is like, thank God for like getting married young and you know, we talk about, my daughter was 14 months old when we, when I was diagnosed and like, she's 27 now. So, and I just, you know, we kind of. Looked at each other one day and said, oh, I guess, I guess we could have kids and we got pregnant, and I wouldn't have her without that. You know what I mean? It's one of those things that you just go, I guess thank God for again, just kind of not really always thinking things completely through. K: So did, were you aware of when you became infertile? Like was it really clear to you because of the chemotherapy that you lost your fertility? H: Um, well I had a two sentence, maybe three sentence conversation with my oncologist, which was, um. My mom was in the room with me and my doctor asked were, um, you, you know, she's like, I know you have a daughter. Were you planning to have more kids? And I just kinda looked at her and my mom kind her finished and said, you were planning to have more kids? And I said, yeah. And she goes, that won't happen. K: Did she explain why? H: Because of the chemotherapy, they were doing. Yeah. And I never had another period after. I mean that, so I've been, that's now being 26 years out. I mean, it's really for me, I've been in menopause for 26 years. I'm 52 Yep. and there's so much talk. About menopause right now and HRT and all these things that are great and things that I'm fine with, but I'm like, what about for those of us who don't have access? Like I, the thing I'm wondering at this point is how do I preserve my body that has been in menopause for 26 years? That usually, you know, is how many years of a woman's life that they're in menopause. Like, I need to double that. So what are the, you know. Answers for me and what should I be focused on in terms of menopause? So. K: Have you come up with anything? H: No, I, not really. I mean, of course just general health and lifting and, you know know those basic things, but I would, I actually have been kind of thinking about, I need to some research about finding, maybe finding a doctor who will speak to menopause, um, in, you know, women you know, that have had cancer because, um, while I'm excited to. Find out and hear that the HRT trials were completely botched and whatever ago, and that HRT is something that is accessible for women and maybe a great thing, it's not accessible for me. Right. And for for many people. So like, what are the other answers? And you know, I think because we're, we can't replace estrogen and progesterone, we can't do that. So like. How do, how do we our body going? K: Yeah, I know a lot of breast cancer survivors are taking vaginal estrogen because there's a, a bunch of research that proves that it doesn't go into the whole system. It doesn't act system systemically. Um. But yeah, otherwise we're not allowed to take HRT. Hopefully we'll get more workarounds besides just the vaginal application. Yeah, and I've used some of those in the past too, and it's not been a struggle for me, um, recently, you know, but yeah, the access is just not same. K: Yeah. You're pretty open about your marriage and your family and your podcast, so I feel a little bit more free to ask you about that. So, um, when your, your husband learned about the infertility and chemo link, did you have a time of grieving? Did you, were you, were you able to process that together back then, or more recently? H: I think it, early on it was really just survival. Like we didn't have time to process it. I think it's, it's weird how it shows up for me. Um, definitely have grieved. Uh, not having, um, not being able to have more children biologically. And it comes out in weird ways. Um, in fact, even just probably less than a month ago, I was in a work situation with colleagues that I really liked, all women that were talking about how many children they had and they planned to have and da, da da, da da. And it was just that, that talk that. bothered me when I was in my twenties and even now, to hear people talk about pregnancy as if it's completely always gonna happen and go perfectly well, uh, is really hard for me. And I actually walked out of this conversation, I said, and these are the conversations I leave, and I left. they were like, oh, I'm so sorry. And I was like, no, you're, you are welcome to have those conversations. But that's just. Again, living took priority over everything. And there, there were losses, right? There's K: Yeah. Yeah. There's piles of losses right then in that beginning session. Right. Like too much to process, I imagine. Yeah. And you had an adoptive child before you were diagnosed. H: No, afterwards. K: Oh, after, so I thought you had said you had kids. Okay. So Right. Was it really soon after. Okay. Soon after. K: Okay. So when you were talking about your sternum and that being sensitive, it was because you had adopted him pretty quickly. H: He came home, he was 18 months old when he came home, but we did, he came home in 2002 and I was diagnosed the end of 1998, so yes. K: Okay, so did your adoption process go pretty smoothly? H: Um, I would say yes. Um, I don't know much about adoption and how it's changed over the years. Um, I, I had kind of, I found something that was, I was able to apply to a bunch of agencies and say, would you work with somebody in my situation? And I had an agency reach back out to me and say Yes. and from that. Side of things. It went great. Um, international adoption, I think there's always challenges and like our process literally took 18 months and nine 11 happened in the middle of it. You never know, know, what's gonna come about, you know, we're, it's been an amazing thing, the whole, the whole process. K: Right, of course. So you did an international adoption, it sounds like, and then what was the questioning like about the fact that you had a metastatic diagnosis? Like, did people really know what that meant, do you think? H: I don't think so. I mean, I'll be honest, I think, um, we got letters from a couple of doctors that said that I was stable at the time and, you know, um, definitely that my husband was very healthy and that type of situation. And I, I think I. It? Yes. People's. Um, I, it might be different now. I think metastatic breast cancer is a little more understood now than it was then. K: Yeah, I think it's pretty much assumed that a young woman who's gone through even non-metastatic cancer and has become infertile is a little bit of a risky bet you know, in terms of, of adoption. So it's remarkable that your story is here for us. Like, I think that it tells us that women should try, I mean, it's heartbreaking to try and fail, but it's, it's still possible perhaps, especially if you're married. other thing is like, you know, life is risky also. I get it. That, you know, the diagnosis. Is something that you can just brush off. when I think about, um, wanting to build homes, they're, you know, and, and have children. It's for a lot of reasons. And, and I always, like, I always fall back on the fact that without me, my husband is a really good dad. And that's, and that's important. K: Yeah. I love to see you and your husband on the screen, and it's like every single episode you have, it's like he's never not there. And I'm always blown away by that. There are a few instances where I've seen other breast cancer advocates in this community, and their husband is always with them, but it that is pretty rare. And he's not like an effeminate guy. He's a pretty guy's guy. Like he's a, he's a very masculine man. H: Well, it's funny too that you say that because like he is, he's so supportive of me, but we're also very supportive of each other's things, right? So like, yeah. It's not like we're together 24/7 by any means, and you know, he's, yeah, he's all of those things. A coach, a football official, a all, all of that. K: He's by your side while you're telling this horrendous to, to most men, it would be a heartbreaking story to be there next to, and listening to, and certainly to my husband, who is also a very, you know, masculine man. Um, they don't like to relive it a lot of times, and so I'm just so impressed with him, and yet I can see a little bit of, you know, the tender, tender side of him when he's talking to you about these things. He's a very gentle guy too, so. Yeah. So do, do you and he talk to people outside of your living room? Like I know you're, you're kind of in your little cloistered space when you're doing the podcast, but do you do speaking gigs together and does he travel with you when you speak? H: No, I usually speak on my own. Sometimes, we'll, I mean, we'll take any opportunity to speak together about our situation. That's not a, not that. We aren't willing to do that. It's just the most part when I'm speaking, it's generally on my own. Um, he can come with me, great. I actually have also gotten involved with Little Pink Houses of Hope, which is a organization that provides, vacations for women with breast cancer or people with breast cancer. Um, and when I go and I see the dads or the partners in these situations, I always think, oh, I wish he was here. And, and that's the goal too, is that he will at some point be able to kind of join me because I think the, you know, the partner support is, there's a whole nother, set of things you have to deal with there, right. It's, it is important to talk about. K: I wanted to ask you about your daughter as well. So you have a biological daughter, Sydney, and she is certainly, you know, at significant risk for breast cancer. And, um, I wanted to to have you tell a little bit of her story if you're willing to. H: I will say like. So Sydney has lived her almost her entire life with, with cancer, and we've, it's always been a part of who we are as a family. It's never been something that she's been, particularly scared about or, anything like that. It's, it's just been a part of our lives. she. and I, I should say too, I did, I have done genetic testing a couple of times. I don't carry any markers for any, which is a little reassuring as a parent, I guess. Right. You hope that, you know, a, it's a fluke of how I have it, but it doesn't necessarily mean that she will get it. That being said, she's been in a high risk clinic since she was 18, which is they, they do have them, um. There. I don't know how many places have them, but we live in Michigan. She's been a part of the University of Michigan's clinic. and it provides a whole lot of reassurance for both of us, just that she has been getting these baseline, not just mammograms, but breast MRIs, you know, since, so for nine years now. K: How often does she get MRIs? H: I believe once a year. Uh, you know, she's a typical 20-year-old where she's moved to Chicago and come back. So, um, I don't know that they've all happened in that amount of time. K: Okay. So because you were diagnosed so young and because you had such a severe case of breast cancer, she qualifies for intensive screening, is that something they would've given her a choice to opt out of or were they really pushing her to do that intense of a, of a plan? H: Well, I think they started out, they did do ultrasounds. She's always, there's always been like, no, we need to look at that another time. So kind of along, I've had a situation like that too, where it's the lower level and go to what we need to be at. K: Okay. So she also has some, has some characteristics that make it murky a little bit. So she does, it is justified to do the MRI every year then. Okay, that makes sense. I've just realized I've forgotten to ask you a really important part of your story with the Block Center. Um, personally, this last December, I had a scare and it was looking like I had a lymph node that was, it was highly suspicious and turned out to be nothing. But I was already making a plan for if I had, you know, lymph node involvement. My plan, after looking at every possible scenario was to go to the block center. Um, I was very impressed with what they were doing. And I also really love my medical oncologist here in Oregon, but, uh, I had a plan to make it work and I wasn't quite sure of the financial implications of that. So I wanted to ask you what were, and I know it's been 20 some years, but what were the financial implications for you? H: Yeah, I mean, I had pretty good insurance. My insurance covered almost everything. Um, there were some blood tests that we would do that are a little more, uh, things, you know, where we're looking at different levels of lycopene and different things like that we would pay for. And then my supplements, I, we also paid for, so like Vitamins that they, um, K: So not a lot of money. Not, not hundreds and hundreds or even thousands of dollars of investment. It was really insurance even 20 years ago, insurance paid for it. So all the more so now I would think. That's really encouraging to me. Um, Dr. Block, not only. He, he not only kind of stresses the importance of doing lifestyle modification during your active treatment, but he also follows up after and does a lot of follow up work, which no one in the world that I'm aware of does. Maybe somewhere in Europe they do, but I've never heard of a follow-up program to prevent recurrence the way that he offers his patients. Did you, I mean, obviously. Metastatic is very different than recurrence prevention, but did you have any, um, follow up long term like that, that you wanna talk about or describe that? Was it good for you? H: I just incorporated a lot of things from the beginning and I have kept with a lot of them. So, of course you kind of make tweaks along the way. Nutrition's changed a little bit, you know, but, um, some things have gotten easier. Some things are just the way we do them now. It's, you know, so, um, I, for me, it wasn't. When people would talk about, you know, kind of being done with my initial treatment and like, you can get back to life. And I was like, no, why would I go back to what led me to cancer. Like, I'm not going back. I, I'm creating from here. K: Yeah, it's tricky. It's so tricky. 'cause you know, we believe still that cancer starts with a carcinogen that comes from our environment. Something we can't help and that our weakness to cancer has something to do with our immune system, right. And levels of inflammation. But yeah, diet and lifestyle can really affect. The levels of inflammation and our resilience in terms of turning off the epigenetic switches. Like if, if we're genetically prone, which I think anyone that's had cancer, we, there's probably some gene somewhere that we haven't discovered yet that we are weakened by the, the mutation for. But yeah, the lifestyle stuff is not, it's not a sure thing, but it, the likelihood is we're turning off those weaknesses by strengthening our lifestyle. It's peace of mind, right? H: It's "I am doing something. That's a huge component of this to me, and that's what led me even in the very beginning was, okay, I go for treatment once every three weeks. What am I doing? The other, you know, 18 days? Like need to be involved, to be feeling like I doing something to, you know, make myself stronger mentally, physically, all of those things. K: Oh, that's such a good point. I was gonna say in the beginning when you described your oncologist saying to drink some green tea and eat fruits and vegetables, I was assuming when she said that to you that she was a believer in the placebo effect. Go and do something positive for yourself, whether or not those things are really making a difference. Because a lot of doctors are learning that psychology of cancer is such that you need to give someone a placebo. You need to give them. Something so that they feel empowered and it's, it's been shown in research that placebo works. You know, something that may not even be actually doing physical, biological good can do you good. Just because of the psychological nature of, and the power of it. H: Absolutely. And also not believing, like I was not somebody who was asking. I did get some statistics early on because they thought I'd be an earlier stage, and I remember as soon as I found out I was stage four, I was like, oh no, I was in those. Terrible statistics, you know?What turned things around for me with that was my brother, who's a doctor, who said, listen, nobody can determine what side of the statistics you'll end up on. Like, they're a probability. They are not a for sure. And that changed everything for me, you know, to be able to go, okay, even with this, there's nobody can decide. It was huge for me. K: Yeah. And I know that a lot of metastatic patients come to you desperately wanting to know the exact formula of supplements and foods, and I'm so glad that you hold that lightly, that you're not passing it to them with a stressed out kind of Yes. You need to do exactly this formula. No, it's not about that. So, and, and that's why I was willing to have you on because I, I really actually protect the, um, the podcast from folks who are. Nutritionism, you know, kind of patients because I don't want any of that to be over-stressed, um, as much as I do believe in it. H: I, I will say that to people often, like, you can, I can tell you some changes to make but if you don't believe or want to, if it's only gonna add more stress, you know, like that's not the point of this. The point is to build good habits that actually have good effects, not add more to your plate, and every woman needs that. K: Yeah, and I think that's kind of my definition of nutritionism is nutritionism is taking nutrition and adding fear. You don't want fear in that recipe because the fear will outdo all of the good that the nutrition does. So because of that, I am able to very joyfully endorse your offering. You have a free offering to your listeners that's called The Five to Thrive Program or guides. Tell us a little bit about that. H: Yeah, so I've created multiple "Five to Thrive" Guides and they are just meant to help people kind of create a plan to live with cancer, and they're just. little tips and tools based on mindset, fitness, nutrition, medical, and social components, kind of the areas that we really realized that I focused on the most and still continue to focus on. My hope is just always to give people hope and some tools that they can then build a plan that works for them. Right. The goal is always to live with cancer and, um, there's no one way to do it. I know that, but I firmly believe that helping people find some areas to focus on. It's kind of like, here's the green tea that my doctor gave me--areas that you can really impact, um, how you're living, um, in a, you know, big and small ways. K: Yeah. And I'm so glad that you, unlike other influencers, you're not outlawing meat or outlawing dairy, you know, you're saying, you know, it's, it's a real gray area. It's, you know, those things. And that's totally my philosophy too, is those things can be good or they can be really, really dirty depending on where you're getting them. Thank you for being clear about that. That's so important. So how do people find your, your website? H: Yeah, I'm, my website is heatherjose.com and, um, my products are on there. My eBooks are there. Um, and you can also find the podcast is called, "I'm Still Here... Life with Metastatic Breast Cancer." K: So you do like a weekly episode? H: We were doing two a week, and then I was like, this is crazy. K: Yeah. That is crazy. I agree. Okay. And Heather Jose is spelled the traditional way of Heather, and then Jose is like Jose, uh, JOSE. All right. And I will link to those resources below. Heather, I'm so grateful for your generosity with our community, just your openness and the time that you have spent to share your story week after week, and your husband too, and you know your whole family. I'm so grateful for that. It is such a bright and promising and hopeful story that I want everyone to hear, so thank you for coming and sharing it here. H: Thank you. I, I really appreciate, um, having the opportunity and I would love to, if you want to at some point come and join on our podcast as well and we can talk a little bit more about Nutritionism. K: Oh, awesome. I would love to. That would be great. H: Yeah, people often, they do want a guideline, but I want a guideline that that is, based in truth, K: It's tricky. It's real tricky cause we're continually learning always. We're always learning and perfecting in nutrition, so... H: Yes. K: So good to get to know you. Thank you. H: Thank you.  

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 Shitty: 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 the breast cancer research world, you kind of look into those too. So I highly recommend that if you're a serious. Someone who's serious about advocacy and you really wanna go the long haul and use your knowledge in, in breast cancer science long term, it is a big investment that they make. It is an expensive training and there are scholarships for it. Um, usually they'll just pay for part of it. Uh, but if you have a sponsoring organization like I did, then your sponsoring organization can also provide you with a scholarship in many cases. So that organization that sent me to the NBCC's project Lead is the Lobular Breast Cancer Alliance, and I am now an advocate for them. I am one of their official advocates. After going through NBCC's program, I. I, I started to work right away, uh, leading one of, or coordinating one of their programs, a local advocacy teams program. So the LBCA supports me in a lot of ways, but I also support them because I, I do a lot of volunteer work for them and kind of mentoring other. Newer advocates in an in-person local advocacy team setting. So you can join the Lobular Breast Cancer Alliance if you've had lobular breast cancer, or even if you haven't, if you're a caregiver or someone that cares a lot about lobular, usually it's the patients that come to us. And there's lots of ways to get involved as an advocate. With the Lobular Breast Cancer Alliance, it's one of the most open organizations, lots of ins, lots of opportunities, and those opportunities are made very clear on the website. There are committees that you can join. You can do more nationally based advocacy and education. You can do research advocacy, you can sign up to be a research advocate in lobular trials, and then the Lobular Breast Cancer Alliance will have your name on a list. When a scientist comes to them to say, Hey, I need a patient's perspective, then the Lobular Breast Cancer Alliance would call you and say, Hey, this lab needs a patient's perspective. Usually that lab's not gonna be in your backyard, but it might be probably not. Uh, and then you can sign up to be on the team of people that review that trial in an ongoing way from the beginning to the end. And that's what we call advocates in science or advocates in research. Or you can just do your own local advocacy in your own community to raise awareness for lobular breast cancer like I do and like I help other people do. And that means not just showing up to walks, which would be great, but also showing up. Uh, on October 15th, which is the global Lobular Breast Cancer Awareness Day, uh, it could mean that you're bringing flyers and literature to your local clinics and libraries of clinics or hospitals, or to your clinicians. It could mean all kinds of things. You could do fundraising for the LBCA. Doing all kinds of advocacy and they give you a whole big, long list of ways that you can do that. You can do interviews for national media or local media. You can set up a table at a health fair. Just all kinds of ways to do advocacy with that organization. They're an excellent organization that supports their advocates very well.  The next place on my list is around metastatic breast cancer, which in my experience and opinion, needs a lot of support and awareness raising. And the one of the organizations that has maybe a little bit less receptivity or paths of, , being able to join them is the MBCA, so not the LBCA, but the MBCA, which is Metastatic Breast Cancer Alliance, and they're at MBCalliance.org and you can join them if you're an organization like the LBCA is a member. That's a group member or you can join them if you're a patient who has been metastatic. I tried to join them as an individual member. Since my mom was metastatic as an advocate for metastatic breast cancer and I was not accepted. So I think probably if you're not a metastatic patient, you may not be accepted as an individual member, but if you are accepted as an individual member, they're very supportive. They have regular meetings. They will give you support in terms of like scholarships to training events of your own choosing. And it's a very, um. A great, a great network of resources. So they're gonna provide educational resources and travel grants to get to different conferences to learn about metastatic breast cancer. Another organization that I work with closely is Stand Tall, AFC. I've mentioned them a number of times in the podcast and so I won't say a whole lot about them, but they are about the type of closure that you get after a mastectomy and at stand tall we are really just focused on. Breast cancer walks, it's a very narrow path of advocacy. You can only be an advocate at stand tall if you are going to the breast cancer walks in your community and either leading a team of volunteer, flatties that can, are willing to be seen as flatties. So whether they're wearing a shirt that says flat, or whether they're taking their shirt off to be seen, um, it's just about visibility, support, and solidarity. And then if you've done that kind of leadership, if you led a team in the past, you can move up to the next. Responsibility level and do a table. And so I kind of mentor people around tabling and tabling at walks is very different than leading a team at walks. It is much more conversational, much more educational. There are, you know, brochures and literature and, and things you can hand out and use as kind of prompts when you're just getting rolling. So it shouldn't be something you're too intimidated to do, but it is very much of an educational role. And so Stand Tall AFC has that place in the breast cancer world of just showing up to breast cancer walks and breast cancer events and either showing visibility or educating folks that walk up to your table. Another flat. Oriented organization that's a little different is Stand Tall's umbrella organization, which is a, a nonprofit called not putting on a shirt.org. And um, they are doing a kind of a legislative project where they're seeking to amend the wording to the W-H-C-R-A act. Um, it's the Women's Health and Cancer Rights Act, and they are seeking to just. Put a couple of words in that would make it a little bit more likely that flat closure would be funded by insurance in all cases across the board. Just the way that implants are funded by insurance in all cases, which is what the W-H-C-R-A was created to ensure. So that's a very niche little path of advocacy. But I will put that link down below so that if you're passionate about the W-H-C-R-A and adding those two words, um, so it's not just paying for, reconstruction, but reconstruction or chest wall reconstruction. The chest wall is the two words that we're seeking to add. So that's a very, very, very niche, um, area of advocacy, but very legitimate for many of us, including myself. And so I'll put the link down below to let you look into that if you're interested. Uh, the Triple Negative Breast Cancer Foundation, this is one I don't know as much about. Um, this is one that is, I think they're the main contact for triple negative advocacy in the world. And the main thing they do is. They allow you to help them fundraise. So it is pretty simple. There's not a lot of paths into the actual work that they're doing. As far as I can tell. It's mostly about fundraising or you can receive support from them in terms of getting into a support group or something like that too. And then, um, some of the organizations that are oriented around women of color and their needs are Tigerlily at tigerlillyfoundation.org. They are mostly concerned about equity and um, they have a really beautiful program that they allow everyone, I think everyone can apply to be, to be an advocate for them. So they have their own advocacy program, it's called Angels, and I think it's mostly geared toward younger women who are breast cancer survivors. And it's mostly geared toward. Advocates pushing for equity in healthcare setting for people of color, women of color. So if you become an advocate for them, you're mostly gonna be advocating for women of color, even if you aren't a woman of color. Um, but most of their advocates are women of color, but they're very, very inclusive. I felt very much embraced by them when I met them at the San Antonio, breast Cancer Symposium. They were not. Only interested in partnering with women of color. I've, I'm very much not in that population, so I've, I'm just, you know, Northern European in my ancestry, so. But they were very interested in allowing me to fill out the Angel application to become an angel advocate. So I love that and I love them.   And the other one that I've interacted with a little bit in those same spaces at Project Lead and the San Antonio Symposium is "For the Breast of Us", and their website is breast of us.com. And. They are a little bit less, I think they have a very small staff. I can't tell that whether they're interacting with folks very much on the advocacy. In terms of like mentoring or supporting advocates in, in their space, but they are very much educating and giving lots of resources. So if you're wanting to be kind of a solo advocate and receive from them the resources that they have to give around advocating for women of color and breast cancer, I think they're amazing. They're really good at kind of redefining things in their own terms, so they don't say allies. Uh, they say accomplices and they have a little training for accomplices. Again, for people who aren't women of color who want to be allies, what we call allies in this space, um, they call them accomplices, so more like partners than just allies. And so their website is extensive. It's really, um, it's really full of resources, but you can't. I don't think they even have a newsletter. They don't have a lot of interaction, I guess is what I'm saying. They're supportive of advocacy, but they're not training or supporting advocates or communicating every, every month with advocates the way that the LBCA does, for example. Um, but they do have a great podcast and I think that if you got involved in reading their blog or listening to their podcast, you'd probably find some ways in. To connect with them because I know they do send advocates to Project Lead, so they must have some ambassadors in some respect. Um, so yeah, I encourage you to learn more about them. Uh, let's see. Young Survival Coalition, so their young survival.org is the website. They have mostly science and legislative advocacy programs, and they have in-person events. Their in-person events are more educational. They're not really. They're just educating you about, generally about the breast cancer as a young survivor and bringing people together. They're not really training you to be an advocate. Exactly. Although I think there's some crossover there. Um, but they do have a great, on their website, they have great resources, and if you want to be a science advocate or a legislative advocate, they have pathways for you to follow that are on their website. And then a really small niche, little marginal population in the breast cancer community, even smaller than lobular and triple negative is something called inflammatory breast cancer. The main place to go if you wanna advocate for that population is uh, it's called theibcnetwork.org, so the inflammatory breast cancer network, they are kind of the place to go for resources and for connection. And I've got a couple other, um, organizations that I know very little about. Project life MBC. So Project Life NBC is only for metastatic breast cancer patients. They have a lot of supportive resources in education to help people feel a little bit more prepared to be a metastatic breast cancer patient. But they also have a couple of advocacy avenues that they have for for people who wanna become advocates. Most of their advocates are folks that have been advocating for a while individually and then have decided to start volunteering for them as educators. And so that's the, the folks I know. Who are involved as advocates with Project Life are folks who have been pretty active in the advocacy space and they either teach a class or offer support group or do something give back to the community in that way, online mostly. So most, almost all of their offerings are online at Project Life, but Project Life. Al also has a very, very. Niched, um, area for metastatic breast cancer patients who are, queer or L-G-B-T-Q. So they have one little part of their website that is just this one little project for advocacy and awareness raising around folks who have metastatic breast cancer in that population. So I will link to that below as well.   And then there are a couple of organizations that don't do a whole lot of advocacy, but I just wanna mention because I feel like they also do a lot of good in, in the world and probably will be doing some sort of advocacy just by nature of the fact that they're growing, um, tremendously these days. So The Breasties is one of them, and the Breasty is a very general. Organization, it's, it's just supporting women who've had breast and gynecological cancers. And the main way that they support women is just by having fun. So they just have this camp every year that has incredible funding, incredible opportunities to like dance and swim and just be childish together like you do when you go to camp and, and then also hear from panels and experts and learn a little bit in education. And then the Breasties. They do their own advocacy. So if you wanted to like be on their board or take a leadership position with them, I think they do advocacy, but they don't really partner with patients a ton around advocacy. That's my impression, just looking at their website and trying to understand what they're offering. I may be wrong about that, but they do have some things they're boasting about doing in terms of the advocacy space, but I think it's just their leadership team that does it. And then there's an organization called Cancer Culture, and it is very event driven, and it is on the east coast. It's in Virginia. So for those of us on the west coast, we probably won't really interact much with cancer culture, but I just wanted to mention them. For those who are on the East Coast and you're interested in more of an artistic, um, kind of event based and aesthetic based organization, they, they started kind of. In the realm of art and fashion, I believe. And so they have a very flamboyant kind of, uh, affect. And like I said, that's, it's all in person event based--it's, not online at all. Another place that I've heard about through in different conferences that I've gone to that's very curious to me is an organization called Make Cancer Less shitty.com, and they are all about the side effects of cancer. Not just breast cancer, but all cancers. The drugs that we take, the chemo that we take, the long-term metastatic drugs, all have just horrendous side effects, usually including diarrhea. And so that's why they chose that title. And they're, as you can imagine, they're very edgy and their approach, and they do have specific ambassadors that they have partnered with that go out and talk about how difficult it is to live with cancer and how much we need drugs that are less harsh. And so you can apply to be a partner or an advocate ambassador with them specifically. And uh, then they will allow you to have some resources to go out and talk, maybe do some public speaking. And I think it's mostly awareness raising around just the symptoms and, and making sure that doctors know and don't minimize the intensity of the quality of life sacrifices that we make, as cancer patients. So it's kind of a political issue, I guess, in the medical space and it's a very, very niched focus and I think it's really cool. Okay. That's a lot. Now, I wanted to say too that a lot of advocates that I know will also do their own. Research into how to go and find people in their own places, their own cities and towns that are doing important work in breast cancer. And I would say that that happens on a very grassroots level just by looking and listening and learning. I have learned so many. Different labs that are doing cancer research. Well, a lot of 'em are gonna lose their funding in October because of all the crazy governmental cuts that have been happening. But right now there are a lot of universities and a lot of cancer centers that are doing very good research. And if you have a specific interest in a certain type of research, either a type of cancer, breast cancer that you are passionate about or. A certain type of approach, like a lot of us are more interested in the more holistic trials and what we can do with lifestyle and not as drug centered. So you might find a lab in your community that is doing the kind of research that you're most interested in, and you can as. A free agent as an individual human, you can partner with them as an advocate in various ways. Also, it would be best to go to a training like the Komen Advocates in Science or Project Lead first so that you can speak the language and kind of get the, the lay of the land. But even if you didn't there, there's a chance to learn from them. Get a tour of their lab, for example. Just let them know that you're available. If they ever want a patient's perspective, if they ever wanna bring in a patient advocate on their team in one of their research trials or studies, you could be available to them to do that. So I have an example of this that my friend Anna lives in Tucson and I was learning because I'm a a nutritionist, I'm involved in integrative oncology talks and seminars all the time. And one of the experts on, uh, exercise oncology that I was learning from in one of my seminars happened to be stationed at, I think it's the University of Arizona or something in Tucson. And my friend Anna, is interested in holistic. approaches to breast cancer, and so I emailed her and said, Hey, here's the name of this guy. He's just down the street from you. You may want to talk to him. Just email him and see what he's got going and if he has anything that you could help him with. She had already been trained a little bit to be an advocate to, to be confident in the advocate space. And so she reached out to him and I'm not sure how it went, but that is, is kind of some of the connections that don't happen really super easily until you start just kind of placing yourself in the breast cancer community and the scientific community in particular, which you can do by going to annual conferences. And the best one to go to is in San Antonio. So in San Antonio. The world comes to one place every year in December, early December, usually, and talks about what they've learned about breast cancer. So everyone who's studying breast cancer of all types comes and in all ways. So not just with drugs, but with lifestyle. Also, they come together and there's just thousands and thousands of people learning together about breast cancer. It's just the most amazing environment. I just love it. And it's pretty affordable for an advocate to go there. They get a reduced rate. I think I paid like $50 or something like that, maybe $60. But you do need a sponsoring organization, so you have to be advocating for, or with a nonprofit or an agency, an organization of some sort in order to get that reduced rate. And you do have to pay for your plane and you know, your, your hotel and everything too, of course. But if you're. Advocating with an organization, some of the, those organizations do have money to help you get there and for your hotel and everything too. And then there's ASCO, which is all of the cancers, which to me would be way too overwhelming. I don't have. Much desire to go and learn about all of the cancers myself, but somebody might, you might be interested in that conference. Um, but the, the new conference that I've heard about for the last couple of years that I really wanna go to, that kind of moves around the country, um, is the one for the Society for Integrative Oncology. They have a conference annually. And I think it's in Chicago this year. I think it's coming up soon in Chicago. And um, so I'm not going to that this year, but you may see me there next year 'cause I'm really interested in integrative oncology and I'd love to, to see the best of the best in that space. Now Lobular breast cancer also has, um, well it has been annual, but I think it's gonna turn to every other year. Starting this year, we're not gonna have one. But in the fall of every year, up until now, there has been, uh, the Lobular Breast Cancer Symposium, and it was in Philadelphia a couple years ago. And then last year I was overseas in Belgium. And next year in 2026, it's gonna be in San Francisco. And so I will definitely be there. That's close enough to home that I can make it very easily. Now you can find little. Tiny organizations in your own community to do good work. Also, like I do a monthly craft night, uh, in a satellite group for people who live near me with a local breast cancer support organization. And I guess that's, that's kind of advocacy. 'cause when people come together, we end up doing education and we, we converse about resources. So I'm educating folks just by nature of being with them in person . And you might have a local breast cancer organization that does a lot of good work, and maybe you can reach out to them and see where your talents match their needs and see if they need someone to lead a support group or if they need someone to lead a craft night or a walk. Um. Some kind of in-person activity that would support breast cancer patients that are feeling isolated. That would be a great opportunity to, uh, be an educational advocate as well, because like I said, if you're being around people just naturally you're gonna be sharing your experience with them and their, your experience means so much to them. Um, being new to this space and being a new patient and just not having a whole lot of information. So there are little ways to do educational advocacy as well that aren't as, um, I don't know, not as long-term commitment or reaching across the country and working with people from all over. So you can find little small ways to contribute as well. But that is kind of the summary of the more complex and intense ways to become an advocate. I started this series because someone reached out to me who had lobular breast cancer or a type of lobular breast cancer, and she didn't know that she could get involved. She was just like, you know, "what do you mean when you say advocacy? You really mean that there's a room, room for me as a new patient to come in and do some work and just, you know, team up and partner up with others that have been there and, and really know a lot more than I do?" And the answer is yes, absolutely. Almost all of the organizations that I mentioned today are very happy to receive one more person on their team and to support you in the ways that they do. So don't be shy. You know, introduce yourself to the executive director. Most of these organizations are quite small, and the executive director is, that's their job is to get to know new people in the community. Make connections. So they may not be the one that you work with long term, but you can introduce yourself to them and see where you might fit best in their organization. You can always ask, even if they don't have the infrastructure to support you long term as an advocate or as a representative of their organization. If you're a fan of what they're doing, they're gonna wanna hear from you. They need that. They need fans. They need people to take their message out into the world, and chances are at least they would give you a gig, you know, tabling for them or support you and educate you enough to be a representative in your community. I have a lot of interviews coming up, some really interesting folks. Uh, a long term survivor of metastatic breast cancer. Someone I'm really excited to talk to, Heather Jose is coming up soon and a couple of other new podcast creators from Australia will be guests of mine from Breast Case Scenario. I'm also going to be a guest of theirs and, um, have already recorded an interview with them for their podcast. So I will be following this one up with probably a couple interviews in a row since I've had a couple of non-interview episodes in a row. So look for that. And of course if you don't know about my new Substack, I always wanna plug that. Make sure you look for me at abreastcancerdiary.substack.com. So that's just the website to subscribe and you can get that newsletter. It's a weekly newsletter or maybe three times a month in your email inbox. And if you have the Substack app, you can follow me there without getting an email in your email inbox... and I will talk to you next week.

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 group that was here in my rural area in Oregon that was ready to catch me first off. That was the first place that I went for support personally and where I gave support personally by showing up to an in real life, in person coffee shop meetup, and talking to other brand new survivors and patients in treatment. And then the next place that I went after that was to a mentoring organization to receive a mentor. I went to the organization called After Breast Cancer Diagnosis, ABCD, and um, all of these organizations that I'm mentioning in today's episode. I will definitely list in the show notes with links. Um, and ABCD provided me with a mentor and my mentor, Lori, uh, was also a member of the LBCA, and she's actually the executive director of the LBCA. So that was the third organization that I received support when I started volunteering for them. Another place that I went for support, um, very early on was, uh, for physical needs. So I went and asked for a mastectomy pillow from one of the many organizations and individuals across the US that provide mastectomy pillows as a service to other patients through the mail. And the one that I received my. My mastectomy pillow from was called a blessing box, and, uh, I'll leave the, the link to that below. But I've since found out about other places all across the US that provide these kinds of supports. Uh, not only did I get a mastectomy pillow out of it, but I got a little mini seatbelt pillow, which was also very handy, and a bunch of other little goodies that they sent as just kind of a, a gift in the mail. Uh, a lot of women that I know need prosthetics and they don't have their prosthetics provided by their insurance, and so a lot of women that I know go to an organization called Knitted Knockers to get their first prosthetics, which are knitted as the name implies. Um, they're knitted prosthetics, and they have, they're stuffed with a fiber fill. So just a really lightweight. Polyester filling that makes a very lightweight breast form that's pretty gentle right after mastectomy. So those are ways of providing advocacy too. And those are ways that a person can sit in their home and not interface with people if they're shy or if they're introverts. They can do that kind of very physical service to others, um, through the mail. And there you probably, if you wanna do that kind of work, you probably would be best off with joining with all the others that are currently doing that work, um, and maybe being a regional representative of that work for them so that your package that goes through the mail and gets to people maybe goes a little bit quicker, uh, because they live in your general area. So I would say it's probably wise to not reinvent the wheel and do all of that kind of marketing work that gets the word out to patients, because they're gonna be going to places that they already know and that their support groups already know exist. So no need to develop your own kind of brand new program that does its own marketing, uh, unless you have a, a really strong connection to your local support groups and local breast. Cancer recovery, uh, organizations in which you could provide it to them directly and they could provide it to the people who come through their doors. So there's all kinds of ways. Um, you know, my mentor lives on the other side of the US from me, and I receive support from her, , all, all those miles away. And I've, I met her in person when I finally showed up to a breast cancer conference, a science-based breast cancer conference for the first time that she's involved with. Even mentoring can be very much online and over Zoom or over the phone rather than in person. So these kinds of ways of offering support and receiving support, um, they can be in any form that you need them to be in many cases. I think that. We kind of know where our calling is when we step into the advocacy space for the first time and we think about what we wanna do in terms of visibility and support for other people. We kind of find our niche, you know, just based on what we wish we had been provided sooner as a patient, I think most of us know what was missing for us, the other ways that I have been an advocate in the world is just through this magazine, wildfire Magazine, that receives essays from. Amateur writers that write about their breast cancer experience, that has actually been one of the most powerful ways that I have received support as a breast cancer survivor is listening to the podcast that Wildfire Magazine puts out called The Burn, which tells stories over and over every single week from the voice of the actual survivor who wrote their story in essay form for the magazine. It's powerful, powerful work to share that deeply. And again, you don't have to be an extrovert to write for Wildfire magazine. You just have to write something and submit it and be willing to take the risk of maybe not having your essay printed in that magazine that you've submitted it to. But there's very little risk in terms of being. Known in a public way or a personal face-to-face way. You can go really deep and be anonymous, and you can even write anonymously for places like wildfire. There are also breast cancer blogs, like the one that I write for. It's called Ask Ellyn. And , there are many breast cancer blogs that receive guest appearances and guest writers. And you can write anonymously in those cases as well. And Ellen was recently on the podcast with me and she encouraged folks to send her any form of content. Um, she said, even if you're not a good writer, you can send her an audio file of you telling your story or you overcoming the challenge that is most important to you. And she'll put it on her blog. So the barriers are very, very low, in terms of doing this. And again, even if you only write one essay. Let's say one essay a year for a blog or for a magazine like Wildfire, you can still call yourself a breast cancer advocate because you are stepping up and being public about your support and being public about your story. You're being known as a breast cancer patient. Which is really, it's hard, it's not a part of our tradition in terms of our breast cancer behavior. Um, and you know, in, in terms of the generations before mine, , certainly my mother's generation, but even. The one in between me and her. I think it is more common to be secretive, quiet and dismissive about your breast cancer experience in those generations. And it is becoming super common now in the younger generations to be more open, known and public and articulate about even the most embarrassing and somewhat shameful parts of our experience. And that's really the. The crux of what I'm getting at in this podcast is wanting to hear people's stories, the most painful parts of their stories, how they came through them, and how they have achieved success in that area of struggle. Um, so that other people can hear what it was like and how it happened for them and be encouraged. So, of course, being a podcast guest and on a podcast like mine would be a wonderful way of starting out being an advocate and raising visibility for whatever issue in the breast cancer space that you have struggled through, and I welcome that. If you're interested in telling your story with me, I'll just go ahead and tell you my email address right now. Since we're talking about it so that you can get in touch with me directly. My email address is [email protected], and when I reply to you at the bottom of my email in the signature part, there's a scheduling app that you can sign up right away. And talk to me about what story you wanna tell. So there's not a lot of barriers in that case either. I think a lot of people are really intimidated and think that being on a podcast requires expertise. But this podcast is not that kind of podcast at all. Uh, you don't have to have any kind of expertise except for the story --telling the story of your own body and your own experience going through breast cancer. That is the best kind of expertise that I can find. So I would love to talk more about what you all as listeners are thinking and experiencing and trying on as a new way to do advocacy in your own life. Um, I can tell you what I do right now in terms of visibility and support, um, what I'm doing right now. Uh, throughout the year is I show up to breast cancer events, so I go to as many walks as I can in my region. And I let it be known that I'm flat, flat chested after mastectomy. I do that either by taking my shirt off if it's appropriate in that space, um, which it usually is at a walk, or I wear a t-shirt that has a really large font in clear letters like, and it just says "flat" on my chest. And in a breast cancer event, everyone knows what I mean when I say flat. Um, there's no questioning that. So it's pretty clear that I'm identifying myself as a Flattie and I'm saying, come talk to me if you'd like to. So come talk to me if you'd like to as a step beyond visibility, but wearing the t-shirt is definitely a step toward visibility. Um, I also go to walks and handout literature now, so I, I stand at a table and I hand out brochures and stickers and other information about, especially lobular. And flat closure. So those are my two little niches of interest in minority groups. Um, actually flat closure is not so much of a minority. There are still about half of us that ask to go flat after mastectomy, but it's a perceived minority and it is a choice that is being squelched for whatever reason. For most surgeons these days, they don't mention it as a choice. So because it is under and misrepresented. In the medical space, we see it as a minority kind of cause. So I wear T-shirts also for the lobular community and say, ask me about lobular cancer or ILC. Um. I wear those in the conference settings , or just community settings where a breast cancer contingent is present. So today I just got a brochure from a another breast cancer survivor about a gathering around dragon boat racing, uh, where there'll be hundreds of breast cancer survivors there because they are dragon boat racers or their supporters or families. And so. In that case, I'm going to have to decide whether I'm going to wear my flat garb or my lobular cancer garb. And I'll definitely bring , both of those brochures because I always like to bring all of the brochures that I have and, uh, share them depending on who I'm talking to and what their need is. So for me, I have to kind of choose between those two groups. I'm very equally committed to both the lobular visibility, raising awareness raising, and the flat closure visibility and awareness raising. But I think for most advocates, they have one in particular that they are favoring and more passionate about. I still go to breast cancer support groups, and I have also a general cancer support group, so I show a lot of visibility in those groups beyond just sharing my personal struggle and my experience and my resources. I also almost always bring up my passion for flat closure awareness and lobular breast cancer awareness I went to a, a fitness retreat about a month ago, and of course brought all of the brochures and information there. And depending on the conversation that I would have with folks and their particular passion or bent or struggle, I would share a particular piece of literature with them, um, after getting to know them. So that's a very personalized way of. Showing visibility and it, it kind of goes a little bit into the area of education, which is, I'll save that for next week's. Little bit more complex discussion on how to be an advocate in the education and science spaces, but those are some of the contexts that I am visible as a, a particular kind of advocate, doing particular kind of visibility work when I go into my hospital system, I carry those brochures as well and I make an attempt to go into the library as well as sharing with my clinicians those brochures. And , again, that is a little bit, um, bordering on education, but sharing brochures is not. Being an educator, it's just handing, handing things off. So I would like to encourage you if you're interested in getting brochures and sharing them in those settings, like with the library at your hospital or with your clinicians, when you go in to see them. You don't have to call yourself an educating. Advocate or an educational advocate, um, you can still call yourself a visibility advocate in that case because you're just raising awareness and visibility by handing a piece of paper over whether they ever read that piece of paper or not. You're making it visible to them, and so that's kind of a borderline issue. Or a way of being an advocate, and you don't have to have anyone's permission to do that. I just wanna say, you can, you can get their brochures. You don't have to have a relationship with the organization that produces those brochures. You can, but you don't have to. You can ask for them or you can print them out yourself in many cases. And just give them out to the folks that you run into in your life. And you don't have to have knowledge to back it up or a schpiel or an elevator speech or anything. You can just carry literature around with you about the thing that you care about, getting visibility and, and just maybe place them out in places where, you know, breast cancer survivors or their clinicians are. So that's a pretty powerful way of, promoting visibility for your niche. So in the two organizations that I work with, Stand Tall, AFC, uh, which works for flat visibility, and the Lobular Breast Cancer Alliance, which works for lobular breast cancer visibility. Those organizations will give you brochures. Or we'll send you the PDF to print out your own brochures. And they're very happy to do so. Whether you are an official advocate of theirs that's been trained and is being ongoingly supported by them or not. So that is a way that they are very supportive of you just taking the first little step of sharing literature. And that is a. Like I said, a powerful way to promote visibility and awareness that is bordering on education because if the person does actually open it up and read it, they will be educated because of you and your action. So I would love, in the days between. Today and next Sunday when I do my follow up part two more Complex Ways of Being An Advocate episode, I would love to hear from you any questions or barriers or things that are intimidating to you about doing these kinds of things and just want to encourage you to try it out this week. Um, and think about making a goal however you make goals and track your goals in your life to become. A simple, quiet, um, somewhat lightweight advocate in some of these ways, in the areas which you are passionate about, and maybe like my friend Danyel, who's studio I was at this morning and who I interviewed a couple of weeks ago. Maybe you'll start your own thing. That is about breast cancer advocacy. Danielle was a photographer when she became a breast cancer patient, so it only makes sense that she would become then a photographer of breast cancer survivors in the way that made her feel the most powerful and resilient after breast cancer, which for her was. To dress them up as warriors and take pictures of folks that resonate with that. Not everyone resonates with that, but for those that do, um, she's able to able to be an advocate in her own unique way using her own vocation and her skills and gifts. So maybe you'll have a way to do that as well, and maybe it'll be a lightweight way that you do that. Um. Writing for someone else's blog or taking pictures and sharing them online in your Instagram, or maybe it'll be a more complex way, uh, like myself and some of the work that I do and Danyel and some of the work that she's doing. Um, really getting into the lives of other patients and opening yourself up to their emotions and needs. So next week I will talk about some of those more complex ways of being an advocate that is maybe trained in a more official way, working on things like science, changing the way we do science. And, uh, as I said in my last episode, I think there'll be more of a need for activism actually in the science community now that we're going to be lacking money and support for the research community because of what's going on in the federal government. So, um, maybe some advocacy and activism for the science community coming up, and that'll be. A good thing to see blooming and growing across the country. And um, and then the training that's involved in becoming an official advocate and some of the organizations that you might need to support you in doing that well. So next week's talk will be a little bit more on that level of, where do you go when you wanna really get busy and make this kind of your life's work in, you know, at least a part-time way as a vocation? And that's a different kind of advocacy than the lightweight ones that I've talked about today. So I hope you'll tune in for that if you're interested and if you're interested in these subjects of advocacy and these avenues of doing it, I know you'll really enjoy my future guests on this podcast because that's the kind of conversations that I wanna have in the future. So I will talk to you next week on the episode about Heavyweight advocacy! Talk to you then.

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, not certainly not used to taking their shirts off. Brenda and I were the only ones that did that in this case, and only for a short time. I was pretty cold, but also because I was tabling, I didn't wanna scare people away by being shirtless who might wanna otherwise come up and talk to me. With my shirt on that says flat across it, which is a nice more welcoming kind of greeting, I guess to say. Let, let's talk about being flat. And so I did talk to a lot of folks and it was much less of a party, but it was also very meaningful and productive and built a lot more bridges, I think in, in a different way, in a more conversational way, less of a kind of a spectacle making way. So I don't know, all that to say that Brenda and I have a, a very different memory between those two years and I have a different focus now. I'm tabling now for Stand Tall AFC instead of just being there as a spectacle maker. And I feel really good about that role. I. And I'm looking for other flats out there if you're interested to train under me as someone to table at various walks across the us, especially with Komen and the American Cancer Society, 'cause we've kind of partnered with them in a way that makes it more likely that we can get tables with them. So. There's a little call out for those of you who are interested in working with me. And then moving on to the next interview, which I had with, Danyel, who's a, a good friend here locally and is getting used to a metastatic diagnosis and also has a really powerful advocacy platform of her own locally, which is to take pictures of breast cancer survivors and other cancer survivors in her studio. I wanted to talk about my relationship with Danyel, um, kind of in as an effect of my relationship with my mother who passed away of metastatic breast cancer. My relationship with Danyel has only grown stronger because of her metastatic diagnosis. I think because of that tender spot in my heart, uh, recovering from the loss of my mom. I find myself, instead of being scared of, of being Danyel's friend, I'm actually drawn closer to her. And I think for most people, when you learn about someone who, who is dying, who you know, maybe as an acquaintance or as a lighter friendship, most of us will back away. Giving them space, giving ourselves space. It's only natural to do that. But I'm really glad personally that I am not doing that with Danyel. She also lives very close to me, um, two towns over, but also in a town where I am starting to do a lot of my errands and my shopping now. So I'll check in with her when I'm in town, and I've always helped Danyel in the studio. I've always been an eager volunteer to come and help her with other women that she's photographing. So I've played that role in, in her advocacy work, but it's been a scary season for Danyel. She has a scary diagnosis. Triple negative is not the kind of breast cancer that you want to enter into the metastatic phase with. Um, it's, it's a, a hard time and she doesn't know whether any of these treatments are gonna work very well, and she's already exhausted One. As far as we know, she only has this one last treatment that she's on now. Um, that's, that's not even an option you know, there's always the possibility that her metastatic cancer would stop growing, which is another hopeful option that does happen for some folks. So we we're kind of watching and waiting with Danielle. She's still pretty functional. She's not too disabled by her treatment, but she does have mets to the brain, which has been really scary just in the last couple of months. And just right before my interview with her, she found out that she had a brain tumor. So that, that has been scary 'cause it, it has affected her mobility a little bit. And so I will. Let folks know how Danyel's doing. Um, if you're interested in my Substack newsletter, which I'll talk about a little bit later in this podcast episode, but I wanted to talk about Danyel's advocacy work as a photographer and just how powerful that is and to encourage you wherever you are, whether you're a photographer or a breast cancer survivor, to do more of this work. Um. Get into a photography studio if you haven't yet, because it is so empowering to have someone else take pictures of you and your new body and come away from that, and then look at the pictures and to see. How you feel about your new body, um, whether it's playful, whether it's bashful, whether it's powerful, forgiving of your body for changing or for needing the changes. It's just a really transformative experience in, in my. Story and those of you who have the skills of being a photographer, um, even lightweight photography skills can be put to good use by entering this space as an advocate and taking pictures of other breast cancer survivors, um, at breast cancer walks or in a studio space or in a, just a private you maybe outdoor space. That's beautiful. So just wanna encourage folks to experiment with that in your lives. It's been a huge. Huge influence in my own recovery, um, and my own sense of body positivity. And then my next two guests were Lori and Ellyn. Lori, uh, a really powerful leader in the Dragon Boat community. And Ellyn, a really powerful leader in the flat community at large. Uh, someone who's on social media a lot and is well known for her book and her AI tool and her blog. Uh, I wanted to say about both of them actually. Similarly, their stories were both kind of similarly telling a tale of, um, wanting. The most powerful treatment possible, which is very unlike a lot of the gals that I interviewed in season one. I, I just happened to interview a lot of women in season one who did not want a lot of treatment. For whatever reason, they were reticent to sign up for lots of chemo or radiation, and some of them are regretting the amount of chemo, radiation, or, uh, immunotherapy that they were offered and given and. Some of the consequences of that. But in season two, here I am with a couple of gals that are just, they're telling their story and saying how desperately they wanted to be given the most powerful regime of chemo possible. And Lori, in Lori's case, this was like a dozen years ago or so, and, uh. I just wanted, the one thing I wanted to say, coming away from her interview was that you can't really do that anymore. You can't go to your doctor and say, give me all the chemo, gimme everything, load it up, the most powerful chemo drugs that you have and, and have your doctor say, okay, unless. That's what your oncotyping test prescribes for you. So nowadays we have this gift of having an oncotyping test, and it's pretty much practiced across the board. It's standard procedure now to give every breast cancer survivor after or even before. Their surgery, getting an onco typing test to say whether you need chemo or not. And so Lori's story is a little bit outdated in that respect. I don't want to have her story carried forward in a way that is teaching a false truth out there in the breast cancer community in terms of what is practiced these days. Um, she was not given an oncotyping test 'cause they didn't exist yet in her story. And so she was able to ask for a more potent package of chemo, and she compared her story to someone that was reticent and reluctant to have as strong of a package and that person did die. And, and that's unfortunate, but I don't want her story to be told in a way that is misunderstood here. So I wanna say that it is your doctor and your oncotyping test that need to inform whether you have chemo. If you're a new patient just facing all of these, uh, possible scenarios, you don't need to worry that be because of Lori's story. She survived because she argued for stronger chemo or more chemo. That's not the way it works. That's never been the way it works. And now we know why is is because we can see some of these mutations and the way that the cancer cells are acting and working and the Oncotype test is the key to figuring that out, that formula of what you specifically need. There will be more specific tests as we get further down the road in research. Um. And maybe this is a good time for me to talk about research. It's a heavy week for me. I have a heavy heart this week because just yesterday, breast cancer.org came out with a podcast. Updating us on what the federal government's situation and, and lack of funding for the NIH is going to look like for the breast cancer community. And I consider breastcancer.org a very strong authority on this. So I'm taking them seriously when they say that probably by October of this year, there won't be a lot of research dollars left in the breast cancer research world. And that is extremely heartbreaking for me as a breast cancer advocate and as a research advocate. And I don't take it lightly and I don't expect that it probably will change, but I think there is still some hope that the judiciary or the Department of Justice will step in and alter that. Um, I don't wanna talk about the wider world of politics here, um, but I do talk a little bit more about it in my new Substack newsletter. And so if you're interested in following that part of my heart and my concern, uh, you'll hear more about it if you do follow my, my newsletter on Substack, either through your email. Or you can also follow me through their app the substack app and even get access to a little bit more of my political side there. There's a little bit of a social media. Platform on Substack now that didn't exist before. And so you can make it what you need it to be. You can make it just a newsletter or you can make it into a kind of a, a Twitter like platform. And so I'm doing both. And the, the Twitter like platform, it's kind of a little bit like Instagram. Like you can write more words and add more pictures. Um, I've never been into Twitter myself, but I, I see it as being similar to Instagram and I loved Instagram and still, still love it on certain days, but trying to distance myself from it a little bit now. Anyway, you can find that on the Substack app and, uh, follow me there in a more daily way. My work as a, a lobbyist for the National Breast Cancer Coalition has been around getting more support for breast cancer research. And the Department of Defense in particular, and also getting more support from elected representatives around Medicaid and making Medicaid available sooner to people like Danyel who are ultimately dying of metastatic breast cancer and should be well, are eligible technically by the letter of the law for Medicaid, but they have to wait a mandatory waiting period of up to two years for. The Social Security Disability and Medicaid benefits. And so I've been really active lobbying for that, um, those changes to happen. And so it's, it's no surprise that I would be disappointed, of course, with this change in NIH and National Institutes of Health funding. That's, that's just happened in the last month or so. So kind of shocking, kind of disorienting, kind of heartbreaking. Very important to keep talking about in my opinion. And so let's keep talking about that. If you get onto the Substack app, you can actually chat with me directly in messages and in the chat. So, um, you can find me there at abreastcancerdiary.substack.com. There's no at sign in the beginning. It's just abreastcancerdiary.substack.com. That leads you to my main SUBSTACK webpage, and then if you get onto the app, you can follow me there too. And then finally, my last guest, Christine Handy, is a friend of mine and I had read her biographical story, her autobiography, uh, called Walk Beside Me a couple of years ago when I first met her, and was really just delighted to hear that. There has been a movie made, not just about that story, but about her continued story after that story ended and her "going flat" part of her story. Um, she's been a huge flat advocate and I really encourage you to listen to that interview if you haven't yet. Um, she's just such a champion for body positivity in a way that I really relate to. I think mainly what she wants now is to change Hollywood and make our breast cancer stories a little bit more honest in the way that they're portrayed in film, and that's kind of her passion at the moment. So that's kind of my reflection on the last few episodes. I wanna talk a little bit more about Substack and how I've kind of restructured my communications scheme. Personally, I used to be all about, well, way back, I was all about Facebook and Instagram both, and um. Had started some groups on Facebook, mostly for DCIS and Lobular, but I've really backed off of Facebook and I've taken it off my phone. I don't really interact that much there anymore except for in my work with Stand Tall. Sometimes I get sucked back into it and I'll comment or like something here and there, but I really try to stay off of it and I only go on my laptop, so I'm trying to work up the courage to take Instagram off my phone the way that I did Facebook a couple of years ago, and the way that I'm weaning myself from Instagram is that I have become very active on Substack. I learned from one of my favorite podcasters who is not in the breast cancer community, that Substack can be used as a newsletter platform. I had no idea. I thought it was only for authors and mostly authors of fiction. And so I didn't think it was a platform for me until about a month ago, and I learned very quickly and. immersed myself in all kinds of tutorials to figure out how to interact with my audience now, both my YouTube audience and my podcast audience on Substack instead of MailChimp, and I am loving it. It is so much more of an authentic. quality, community. I feel that most MailChimp newsletters are cheap and sleazy and just so icky. I just don't wanna emulate them. And so I've been really hesitant to put out newsletters very often, but because Substack is a quality platform that has quality content and no garbagey ads or strange algorithms. So I've been so, so disappointed with Instagram. Not to mention all the political stuff now lately, but I, I don't talk about this very often, but I'm a nutritionist, I'm a functional nutritionist, and functional medicine practitioners have been highly censored in every social media platform. And so I have heard that because of the lack of censoring, the whole censoring umbrella, being removed from. Facebook and Instagram that it has been a friendlier place for fellow functional medicine practitioners like myself, but it's not worth it for me to go back there. It's just not, it's not happening. I'm still on YouTube now and then not as often. Um, but I love Substack because it's a quality clean. Pure experience where you're just getting what you're asking for. There's no ads, there's no, you don't have to pay to be on it. Um, there is the option to pay the people that you're subscribing to, to offer you the content that they're offering you. And my A Breast Cancer Diary Substack newsletter will always be free to everyone, and you can always just. You know, pay if you'd like to. I do have a couple of other substacks that may become paid platforms. One is very new and I started it just because I was giving a talk to a local breast cancer organization about nutrition. And I decided recently that I was going to use Substack instead of YouTube for my nutrition content now. I have about a hundred videos on my nutrition channel on YouTube. It's never gotten very much traction there because of that censoring issue. Uh, because basically 'cause Big Pharma has a vested interest in, places that are doing the censoring. Um, and big Pharma does not like functional medicine because we. Tend to heal people without drugs and, uh, there's, there's no mystery about that. So instead of trying to resubmit all of my a hundred videos of about functional nutrition onto YouTube and put up with their ugly ads that I don't love, I've decided to take them down off of YouTube and resubmit them into substack on a new platform that is a paid platform. And so in the future, when I have paying clients that work with me one-on-one over a number of months, I will give them free subscriptions to that platform to look at all of my old videos. And for folks that can't afford to see me one-on-one, they can pay for a month or two or a year at a discounted rate on Substack and get access to all my videos and not have to watch YouTube's ugly ads. Which gives me some solace. 'cause I don't like offering healthcare tips and advice in the environment where there are ads being offered in the middle of my video that I completely disagree with and do not support because they're not healthy things that are being sold. So I feel really good about this restructuring of my, my first YouTube channel, which used to be called Seeking Deeper Health. It's no longer called that. I'm rebranding it and I probably will still use it I don't know exactly how I'm gonna use it, but the one video that went pretty crazy there was about spas and essential oils, so creating a spa-like environment in your home. And that was definitely not the focus of that channel. And um, so I might still do something about spas. I'm a big spa fan. I like to do reviews of spas. I've done that some on Instagram. So I might do a spa reviewing channel in the future. Using that platform. I still have my Estrogen Diaries YouTube channel, which is how most of you have found me. I think because that's been my most successful social media platform by far. Um, I still have people finding that channel all the time, even though I'm not posting videos very often. I'm gonna be putting much more energy into substack, including my writing, which is a new, a whole new offering for me. I have not shared my writing much. Um. I've been working on a couple of memoirs and a collection of essays for a couple of years. It's been a really fruitful time in my life as a writer since my breast cancer diagnosis, and I've known that I would share that writing somehow, somewhere, and I figured that I would probably self-publish a book or two or three. And I've shared my writing in Wildfire Magazine a little bit with essays, but Substack is a platform that was created for sharing, writing, and um, long form writing. And so I'm thinking about serializing some of my writing on Substack, and if I do that, I think it will be under a breast cancer diary. My, my substack newsletter there that is the same name as this podcast. So it'll be easy for you to find. Uh, the other couple of substack accounts that I have is one for my local flat group, which is called West West Valley Flatties. And it's just for us locals that get together in person. So it would not be of interest to you, but you might see it. When you see me on Substack. You might see that I have that other Substack uh, account, and that's what that is. It's just for locals only. And then my paid substack. Nutrition, offering is, uh, it's called cleanup after breast cancer, if you're interested in that. And it's basically just the price of one, one-on-one session with me as an intake, like a 90 minute session with me. You can get a whole year of content there and I'll be uploading my videos and I will be breasted in those videos because a lot of them were made before I had my mastectomies. And then I'll be making new videos to add to that as well. And then I'll have some challenges. If people want challenges, if they want accountability, and to be challenged around health, uh, nutrition and exercise especially. Oh, and then I do have, I have another substack. I've gone crazy on the Substack and I created one for my new pilot project, which may turn into a nonprofit organization called Walk Away From Breast Cancer. So that is just about walking, it's just about forming teams and accountability groups around walking. So very simple mission in, in that one, but that one is open to people. All over the world. I am encouraging folks to take my model and replicate it in their own communities, and I am nearly at 40 minutes. So I'm gonna try to wrap up here really quick. Um, I wanted to make a couple of announcements for the first time. I've been being interviewed on other people's podcasts and YouTube channels, so wanted to share my first couple of interviews with you. One is out now and one will be out in the next couple of days. Uh, the podcast interview that I did feel really good about it. It's a good representation of my story and it's with a gal that I know pretty well and I trust pretty well, and I love her podcast. It's called Breast Cancer Conversations. So if you look for that in your podcast players, uh, you'll find me there in her latest interview. Uh, Laura Carfang is the gal that interviews me. And then the one that's coming out on YouTube in the next couple of days is, uh, a very large YouTube channel called The Patient Story, and their mission is just to get more information out about cancer and different cancer patients. Very differing stories. Like everyone has a little bit different of a story and so they wanna tell as many of those stories as they can, and they have a website and they put out at least one video per day, every day, all year long on YouTube. So it's pretty big channel. They didn't want me to share my last name for some reason, so you can't search by last name, so you'll just have to watch for it as I do over the next couple of weeks and maybe subscribe to that channel if you're interested in hearing more cancer stories. And that will be, um, kind of short. I think it'll be like a half hour long interview. I don't know how they're gonna edit it, but it'll have a lot of pictures of me and my family and my life, which is new for me to share that kind of personal stuff online. So, um, and then I have a new video coming out on Estrogen Diaries about my new prosthetic. I've been wearing it a little bit more and I have some tips and tricks around, working the best ways to work with a custom prosthetic. So in my case, I have a prosthetic that was, a scan of my body that created the prosthetic. So it matches my, it's meant to make my left side match my right side, basically so again, if you wanna follow my Substack newsletter, if you wanna get it in your email inbox once a week, you can go and subscribe at abreastcancerdiary.substack.com. And if you don't want it in your email inbox, but you wanna follow it on the app, you can go to the app, download their app, and then just look for a breast cancer diary under the Substack app. And you can join me there in the chat and in what they call notes, which is kind of like the Twitter, Instagram option, and on my weekly email blast, which comes out on the app as well. I will not be having a guest next week either. I will be talking about my advocacy journey because I've had a couple of people asking me about this recently, and I realized that my YouTube video on it was not taking off and getting the exposure that it needs. So I'm gonna do it on the podcast instead. Just me talking about how I became an advocate and how you too can become a breast cancer advocate and the different ways of being one. So stay tuned for that next week, and I will talk to you then.

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 literally looked at it. It was like, I'm never filling this. I never once put a cup on. I never once put a bra on again. Never. K: Why do you think you didn't? C: Because I think I had such a solid foundation with my self esteem and such a solid foundation with my faith that I was like, Okay, well this is now my job to use this pain like I was so used to using my pain for purpose, like, "okay now I've got this job now." I have to use this to help other people. How can I do that? Well, I've been a more a model for 40 years Duh, how I have to do this. so it was so It it made so much sense I would go back into the modeling agency and also the modeling world. And it's funny because, and I have a post about this today—how there's so many doors that can be closed, but if you keep going, another one will open. And so often people quit in the middle. I first was concave and I went to my modeling agency that I'd worked with for years and said, I'm going to come back to work. They were like, okay, great. then I went in and they said, yeah, we don't think so. it was no, and it wasn't, I didn't take it personally. Like if we can remember that none of this is personal, they just didn't, didn't have my vision. And so I was like, okay. So I called my manager and I said, I need to get back into modeling. I'd like to start doing runway. And she was kind of like, okay, but she's a, she's a champion for me. And so she got me into some runway in just to see the shows, to go attend the shows, and then I would walk up to the designers and say, my name is Christine Handy. I'm a long time model. I had breast cancer. I have a concave chest. I'd like to work with you. I'd like to walk in your show. We can help a lot of women. And people said, yes. And then ironically, after I partnered with, well, I did various designers in New York fashion week. I did Miami swim week. And I did a partnership with Victoria's Secret. And then I got this modeling job that approached me and said, we want to sign you. And I thought, isn't that interesting that it's not the same one that I'd worked for, but how that door was shut because this modeling agency was coming in and a much bigger agency, a much bigger platform. So that's a good lesson of just wait, be patient, keep going. K: So I know in your like 20s and 30s you did like The Gap and J. Crew and a lot of like fashion magazine modeling. And it sounds like when you came back, you eased your way in more through runway, like live modeling. What do you like better? Do you enjoy one over the other? C: Um, you know, I felt, I feel very at home in front of a camera because I started when I was 11 years old that's just kind of what I did. And so when you have a job that, that spans decades, you're pretty, usually pretty comfortable in that space. so when I did runway, it was a little bit uneasy for me. Because it's, you're really, you're kind of in front of, you're meaning you're in front of cameras, but you're in front of a live audience. I'd never done runway before so it just took me about a month before New York fashion week, before the first time I did it, and I would practice every day cause I didn't know how to walk in a runway. And I wore really high heels because you never know what kind of heel they're going to put you in. And I needed my calves to be able to handle whatever slingback shoe they were going to put on and maybe not stable. I worked out in those heels. I went to the grocery store in those heels. I walked on the boardwalk in those heels. I wore those heels 12 hours a day. Because I wanted to make sure I was, know, going back into the modeling space, doing something completely different, but it was my job show up like I had been doing it for decades. And so I had to train my body how to do it. And once I did it once in New York fashion week, I was like, okay, I got this. I can do this. Then I went to Swim Week in a bathing suit with a concave chest and I was 51 years old. K: And no regrets? C: God, I loved it. I mean you could, if you read the messages that I got from people all over the world, you would be so glad that you had that moment. Next to my, where I got out of bed one day, I was like, I got to go back to modeling. And it was just that fleeting moment. And I could have just said to myself, "you know what? You don't have to do that. It's you've got other projects and why put that on you? You're not a runway model." There's so many reasons why I could have just said, nah, but I thought this came from somewhere. This, this spark came from somewhere I have to follow through. And, and by the way, if. If the doors, other doors didn't open. If I didn't get New York fashion week, I didn't get Miami swim week and I didn't get big brands. I would have been like, okay, I tried and it wasn't meant for me. So I'm going to go down a different path, but it was meant to happen. K: And now in your 50s, you've got regular modeling gigs still, or do you just do the fashion weeks now? C: No, no, I turn them down. I've turned jobs down all the time because I'm so busy with the film and I'm so busy with other things. And so I, will I go once the film is launched, will I go back to more modeling? Maybe I think that, you know, I've done a lot of speaking recently internationally, and I think that my heart. Is kind of going in the direction of being in front of a stage in front of people. And so I think once the movie is launched and settled, I think I'll go, I'll start more speaking. K: Okay. I want to talk about the film, but one more question about your modeling career. I'm really curious to hear now that we have these dove commercials that are setting new standards for body positivity. We have shapely models now all over the place, and we now have some breastless and Uni models, uni-boob models. Are you getting people knocking your door down? Like, is there more demand? Like if you didn't have the film would there be more demand that you then you could handle because now we have a new standard In the beauty industry. C: Yes, I think for sure. I, you know, looking back on my modeling career, when I was at the height of my career, maybe at 21, 22, there was nobody doing this and there was not, there wasn't different body types. There was one, but that was 30 years ago. And so the change has been significant, but it takes people a lot of courage to make those changes and they would have never, no, none of those big brands would have partnered with me had there not been a shift already. Nobody would have said yes to New York fashion week for somebody my age with my body type. If the change had not started a while ago. And the only thing that I could do is try to, you know, permeate more change within the industry. And I, I'm, I'm certain I have, you know, showing up with a lot of courage and, and I love talking about courage because so often I don't wake up with courage every day. None of us do. But if we can see somebody with great courage and we can borrow their courage, maybe that gets us to the next day when we have our own courage. So by me modeling flat, if that gives somebody courage, then I'm lending that courage. So that's that person can then use that until they get their own courage. And that's why I think women championing for each other and elevating each other. We all rise together. There is no competition. There's no ceiling to how much we can help people. when we do it collaboratively and collectively, we all rise together. K: Yeah that's the quote I was reaching for. "You can borrow my courage." Thank you. We've all borrowed your courage at this point, um, and I think on Instagram as much as in the public sphere. So thank you for that. Who do you give credit to for the beginning of this change that's happened for body acceptance and in the industry? Do you see where it started or can you give credit to someone before yourself? C: You know, I, I think it started with the... I don't know what the right, it's so hard these days to be politically correct on what language to use, but the plus size model was the first to change it. they were the renegades and I give a lot of credit to them. And then it was these other subgroups, um, that came after that. So I think they started it. Yeah. K: Okay, so the women themselves, not, not the industry starting it, but the women pushing for it? C: I think the plus size models did, had an enormous impact on the modeling industry and on the fashion industry and on marketing, the marketing industry. I, yeah, they did an amazing job and, and I think they, they paved the way for other people like myself to come in and go, okay, well, what about this subgroup? K: All right. Well, when I first met you, maybe a couple of years ago, year and a half, two years ago, you gave me your book, uh, you sent it to me in E format and I read it right away and I was so amazed. I loved it. It's called Hello Beautiful… And it's. Oh, Walk Beside Me, right. Sorry, the film is called Hello Beautiful. Walk Beside Me was your book, and Walk Beside Me was, I feel like it was part one of your story, and maybe Hello Beautiful is, is picking up where it left off, because it's, they're pretty different, I think, but what I remember about your book, and it's been a while since I've read it, but is your community of women friends that you didn't even realize the power of. They held you up in times of deep, desperate weakness. Um, you had a health, a major health struggle before you even had breast cancer, um, lots of pain, lots of physical pain. and working and fighting through that. And you tried to do it alone, and you insisted on doing it alone for a while. And then you realized you needed help. And the book and the story is such a beautiful example of relying on your friends, your women friends, and specifically for you, friends with a deep sense of faith in a Creator-God, you know, the God of the Western religions. You really transformed through that story, and you showed yourself to be a different person at the end of it, um, and of course, none of us knows what this new film is really going to tell us, because it hasn't come out yet, and we've only seen a couple minutes in the preview, but I'm gathering that this has a little bit more to do with your family relationships and maybe when you wrote the book, you weren't as comfortable writing about something so tender in that moment and addressing the family relationships. I'm excited to hear more about the family dynamics, but tell us like where, where do these two stories overlap? Is there some overlap between the book and the film and where does the film start? C: It's funny that you say that nobody's ever asked that question that way. And I've been interviewed hundreds and hundreds of times, and I love that you just said that the book is a total 180 transformation. I talk very openly about the things that aren't very flattering about my life. And I do that because I think it's so important we negate the social media, um, this perpetual, like, highlight reel that goes on in social media. I can't stand it. It's not fair. It's teaching our young women that they're not good enough. And if I wrote a book about my friends and how they showed up for me because there was some lack at home how oh great my life was because they brought me food every day and they showed up every day and they brought me gifts and they celebrated my birthday and they were there constantly and they taught me about God and that's a portion of my life. But there was this other portion where I was like getting rid of all the false idols that I had depended on for so long that weren't—they're not what I should have been focusing on. You know, I was more concerned about going to a workout class than a Bible study. I was more concerned about the Prada bag because of the label. Then I couldn't carry it because of my arm was fused. It was all these things that were being like my beautiful hair that I had coveted for so long that was kind of part of my identity in the modeling world. It was taken, it was gone. So it was surgery after surgery, after illness, after illness. I first had my colon. Third of my colon removed and then my arm and then breast cancer. And so it was like this, this pressure cooker that I was in and my friends, they were the ones that first taught me about courage. They were the ones that stepped up and said, we will be your guiding light. We'll be your courage. And so the book is about that transformation and it ends, the book ends with a chapter that you really don't know where she is. Like you don't know where she's going. It ends with a kid on the beach playing a guitar and she's in, it's kind of broken the guitar and she's like, "yeah, that was me. I was kind of broken, but my angels were nearby." And then the, then the book ends. Well, the book was published in 2017. After that in 2020 was when my chest was excavated with the implants. So that's doesn't even, that's not in the book cause it didn't happen. So we took a part of the book that was breast cancer related and didn't bring in the arm and didn't bring in the colon cause it was confusing on screen. So when they were writing the screenplay, they were like, we have to have one illness. And we can't have 30 friends, we can't, there's no capacity on a film to have that many. So let's pick a certain amount of friends and put the different characters within these friendships. so that's part of the shift in the film. And then you have to have, part of the reason why we show a family dynamic is because not just the patient that goes through the disease, the family goes through the disease. And how not fair would it be for me to show that there's this perfect life at home, me going through this disease and everybody showing up for me and my family, when that's typically not true. Like, I want to make sure everybody's included in this film. And then show that the concave chest, because that now existed in my life. I didn't want to show implants, for sure didn't want to show implants. I would, I was never going to promote that. And so we had this element of now we were, we're going to show that. And we, we couldn't, we made the decision in the end to really show it because I thought we can talk about it, but it's never been shown in film and what an impact that would have if we actually showed it. so I think that's going to make a big splash in the world. So we were trying to figure out all the elements that would help the most amount of people. That's really where we took bits and pieces of the, of the book and then added bits and pieces of my, my life. Now I will tell you that I did go through a divorce. We do not show that in film. The couple is a beautiful, you know, it's maybe it's a, maybe it's a, uh, a prayer of what I'd want—this isn't what I want my future to look like. I want this type of beautiful relationship. And by the way, in the film, It's very tumultuous. It's a roller coaster. Like a lot of people go through, you know, disease affects everybody in the family. And so I hope that that's a long way to answer your question. K: No, that's exactly what I was wondering. And I know you have two sons, right? So how, how are they dealing with this, this film? Is it making it, them nervous? Do they feel like they're gonna be represented in the wrong way? Or is it because you put a daughter in the film to kind of take it away? Maybe, I'm guessing it's taking the attention away from them. How does that work for them? C: For sure. The situations that the daughter goes through are, are the, they're very different than what my sons went through because she's a daughter and I can't, I'm not going to give away why, but when you see her situation, it'll be like, duh, that makes sense. She's a girl. They're boys. we made it very clearly. This is not what the issue was at home, but there in the book, it obviously hints that there was issues at home and, and so I, they've never seen the movie. I see it all the time. My parents have seen it. They haven't really been wanting to see, but they'll be at the premiere. You'll meet them. They're brave kids. And by the way, they had a sick mom for a very long time. they went through their own hell and changes because of their sick mom. I didn't have a sick mom, so I can never judge how they behaved. And by the way, fear translates into anger. When you're afraid, people typically get mad. And that's a reaction. My kids were afraid I was going to die. And so they didn't want to get close to me. And that's a normal psychological reaction. Although it was hard for me to have some distance within my own family. It wasn't out of the ordinary. That's so interesting for you to say that because I've just been getting closer to my daughter again for the first time after my Diagnosis. So, yeah. I think again, all of these things are so worthy of talking about and so often they're misunderstood or not talked about. So if we can put a film out there that talks about these tough issues, again, not flattering but truthful, that helps a family. K: Yeah. I know you can't see through to their hearts, but do you feel like your faith has translated into their lives, the boys? C: I do. And I think I, I think what I taught them early on in their life was wrong. I taught them to covet things like I did, and I'm trying to change that in their life. And I think by being a service in the world, they see that now versus self serving, which I used to do. You know, what can I get out of something versus how can I give? And I've done this for a long time now since 2012. So I think it's, I think it's shifting in their minds. I do it for them too. You know, I want to leave a different imprint on their life. K: Yeah. So what are you most proud of about this movie? C: You know, when I was going through breast cancer, I sought out film and TV because I had no idea what I was about to go through. I knew I was going through chemo, but I didn't know how to even wrap my brain around it. And as you know, when you're diagnosed with an illness, are inundated with medical information to ad nauseam. You can't even hear it. At least I couldn't, and when I sought out films, I sought out films about cancer because I wanted to see how they were displayed on, on, in media and also in, you know, with, in narratives and stories. And in 2012, there was no Instagram, there was no Facebook. And so I wasn't looking at Facebook groups to talk and chat that didn't exist. So a lot of people like myself, we looked at film. And I was disappointed in what I was seeing there's a diagnosis and there's a funeral and there's not much in between and I was like, "I'm going to die. I, I, I don't know why I feel so much hope. I don't know why my friends are saying that I'm going to live. I'm going to die." And that, that, that scared me that there was so much media film about that. That ending, that type of ending in 1970, 80 percent of breast cancer patients died and 20 percent survived. That's flip flopped. 80 percent survive and 20 percent don't. Why are we, why are these the same films we're watching? Why is this the same ending? I felt righteous anger about it. And I said to myself, if I can ever write this book, I'm not a writer, so who knew . If I can make this book into a film. That would be a dream of mine to change the narrative in film on cancer. And so it's been since literally 2013 where I've had this idea in my head like, What if I can change that? What if I can put a movie out there that ends in hope and ends in survival? Wouldn't that give people hope? And so that's the whole reason for me, for the film. And again, then there were these other additions that we put into like, Oh, what if we put in the concave chest? Or what if we put in the family relationship? What do we, so there was always these things that we could add to help, you know, people feel seen and heard. And, and also that you'll see in the film, we show like the depth of pain of chemo. I almost died during chemo. we don't mask that. We're not trying to put a fluffy Disney movie out there. We're trying to show so that people are like, I, I, that's how I felt. That's what, that's what happened to me. That's how sick I was. And nobody knows it because I was hiding in my bathroom I don't want people to feel that way. I don't want them to feel alone hiding in their bathroom. when my, my father saw this film, which he was really against it, he was like, you don't want to put your life that far out there, you just don't want to do this, trust me, and I was like, I'm doing this when he saw the film, he wept. And he said, I had no idea the pain you went through I'm sorry. I was like, that's the point because nobody sees this side of it. And so I'm not putting it out there as like, Oh, a poor pity party. I want people to see themselves and go, finally, somebody's saying it and showing it. This is what I went through. K: It sounds like you had a lot of creative input into the film. C: Um, I, I worked really well with a director. We've become very close and he bought the film from me. He bought the rights to the film in 2018, and we collaborated on doing it as a project together. But it was, I, I, when I tell you, there was a lot of closed doors. It completely shut down in 2020. People said it would never be resurrected again. They said the movies that were going to come out or are about to start will never get resurrected. And I was like, well, you don't know me very well. And ultimately we resurrected it and it, and then there was a writer's strike and then there was an actor's strike and all those things. Stopped the film completely and so many people were like aint gonna happen and I was like, I think it will yeah K: Did you get a new director then? C: No. He wasn't the one that was saying that It was just outside sources, but he it's funny because um, there were people in Hollywood that said to me We don't need another female led sick lit film I was like Yeah, I think we do. Yeah, I think we do and I'm gonna make it! Yeah, who knew? K: Yeah, we need different stories. I appreciated that Firefly Lane did at least show a marginal issue of inflammatory breast cancer brought to light a different type of breast cancer, like lobular is often, you know, ignored and, um, it's very different than ductal. Um, but yeah, it's, it's so sad when suddenly the main character is just gone and, uh, you don't want to You don't want to identify with that as a patient. I'm, I'm really curious to see what happens in Virgin River. It's one of my favorite TV shows my mom and I watch together. C: LOVE that episode, and you know what? I think she's gonna I think they're gonna have I just believe that they're gonna have her survive—especially that scene where she is with her friends. K: Yeah. Out on the beach and they say, yeah, we're going to fight this. Yeah. I love that. I love that. So we'll see where that goes. It's intriguing. C: Certainly this movie is gonna start a conversation and And it's funny because I had, there was an article that was written, I can't remember the name of it, but I've read it like a hundred times it came out of Hoag Hospital and that's in Newport Beach, California. And it talks about how Hollywood is, has a, has a say. And how people feel hope or don't feel hope and the guy that wrote the article, he did a study from 2010 to 2020 and he clearly writes how more films end in the funeral of cancer than, than survival and he writes my oncology patients come in and this is what they're talking about and we have to do, we owe you guys owe them better and I reached out to that doctor who wrote this Did this 10 year study and we're having a call this weekend. I invited him to the movie and I said, we have a lot to talk about. And he was like, I can't believe you're putting a movie out about survival and these are the reasons why. And he was like, so happy. Yeah. I'd love to see more stories about the different facets of metastatic breast cancer too, because it can be a very long and, you know, you can be very active and functional with metastatic breast cancer. And people don't realize that, you know, Angel Studios just came out with a, with a stage four documentary on and she dies. Again, I'm I like feel like beating my head against the wall like there's so many people that survive Why are we just showing one narrative? K: So besides Instagram, you and I have a common, um, activity of participating in walks with Stand Tall AFC. You led a walk in 2023 in Miami where women kind of came from all over the place to, to join you. And it, I wasn't there myself, but it looked like a really joyful celebration. Tell me a little bit about that memory and what that was like for you. C: Well, I don't usually do the walks and it's not because I don't walk every day I do but I'm usually traveling and so I they asked me to do this walk and I, and I was, I guess, part of the organization team. And I really didn't know what I was doing with the organization part. I usually don't do that part, but the actual walk, First of all, so many people from around the country and around the globe came because Miami is kind of a hot spot. And that was exciting. And then the stand tall group was mighty and there were, you know, a lot of people that showed up for it. So it was, it was exciting and fun for me. That was my first walk ever in the breast cancer space. And you hear about all these walks around the country and I just kind of always like, well, I should go to one. And so it was kind of, it was, it was empowering for me to be there and to meet other people. Of course, it's, you know, it's always fun and meaningful to meet other people in the community. K: Yeah. And you wore the Wendy Sage, for those who are watching on YouTube, I have Wendy Sage right behind me. And you had the t shirt on that had the new Simpsons character with a single breast. Yes. It was great. What a great day. K: And now I'm working with Stand Tall and we just met last week to talk about your premiere, the film premiere in Hollywood with the Beverly Hills Film Festival at the Mann's Chinese Theater on Hollywood Boulevard. Tell us about what that's going to be like. C: Well, it's going to be an exciting night. I'm so glad you're going to be there. It's going to be, um, I think a lot of people, I hope a lot of people in the breast cancer community because it's, it's one thing to fill it with Hollywood types and business people and not that that's not important too. It is important and there's going to be, you know, brands like Pfizer represented and, and those types of people as well. And it's also important and doctors, I really want doctors to be there and there's some some coming. It' a conversation for them as well. But this movie is for the survivors, is for the caretakers, is for the families. And so to have them there to experience it on the big screen. I've never seen it on a big screen. I've only seen it on a computer. And so to see it all together like that, I'm hoping that it's, it's very impactful for not just the people there, but for all the spreading out of through social media that people are going to share and. only then can we really make this difference in this film. It's not for one night, it's for, it's for the longevity of this film. So, and this is just the beginning, right? We're going to have openings in other places, but this is the world premiere, so it matters. And so I'm hoping, my biggest hope is that when we do show a concave chest towards the end of the film, there is a big roar K: Yeah, So talk a little bit more about how we can help get the film into other film festivals. Like we have one in Portland. Um, do you want advocates out there, breast cancer advocates to help you to advocate to get the film into local film festivals? C You know, it is, it's important and it's hard because most of the time, I mean, we've gotten turned down by film festivals, I mean, I, I'm not knocking any of the golden globe winners this year, what a difference in a film like this versus the one that won the Oscar Anora, right. And we're just telling such different stories. And people obviously want that kind of story. It won the Oscar, but it also won the Cannes Film Festival. We didn't apply to Cannes Film Festival, but we applied to Venice and Toronto. And we were turned down because you have these big, huge budget films that are portraying that type of show and they're being promoted. So it takes a community like ours to say, hey, no, we want something like this too. We're, why are we being left out? And so it, I don't know exactly how yet, other than, you know, to get a list of the festivals that we are applying to and to have people write in, say, you know what, we want this film. And I think that would make a big difference. I think it will impact it, but I think it's going to have to be a , grassroots level of people joining forces and saying, this matters. K: Yeah, okay, so now's the time to share your handle on Instagram so that you can enlist us to do that on a regular basis Because you're active on stories every day. C: I just do. I remember when stories came out, I was like, I don't think I'm going to spend a lot of time on stories. I love the stories. So @christinehandy1 is my Instagram name because there was already a Christine Handy. When I. Went on social media and so I am active on social media and I, I don't use it as a political cause. I don't use it as necessarily personal. I use it for to help people. I use it to inspire people. And that's it. I'm very clear about my, my mission on social media. K: Great. Okay, so we'll watch for you there and Want to make sure that folks know that it's not too late to get a ticket as of the release of this podcast Episode I think it will not be too late to get a ticket to your April 1st premiere on Hollywood Boulevard at the Mann's Chinese theater. C: And my rate is $23. A ticket is $160. But if you use my family rate, it's $23. K: Okay. So we'll have that link down below in the show notes on my website of breastcancerdiary. com. And if you'd like to subscribe to the stand tall newsletter, you can see it in our archives on sub stack. So that's https://standtallafc.substack.Com and we will see you. On Hollywood Boulevard! On the first! C: Can't wait. I'm so excited.

My guest today is a breast cancer advocate who uses her voice and her writing to walk alongside new patients in so many ways--she has a blog, a memoir, and now she's got an AI companion for those who haven't found a human connection yet, to process their breast cancer experience with. Her web site is called "AskEllyn.ai" and that's where you can find all of her offerings.  Ellyn wrote her story of going flat just a couple of years ago while sitting in the chemo chair. Today she's collaborating with functional practitioners as well as brand new breast cancer patients to put out a community blog full of collaborations. I love what Ellyn's doing in our community and I love her openness about all of the challenges she's overcome. Subscribe on: APPLE PODCASTS - SPOTIFY - AMAZON Or watch on YouTube: https://youtu.be/agbu6QjDiXs Support A Breast Cancer Diary Podcast by making a donation here: https://liberapay.com/abreastcancerdiary/ Join our Newsletter List here: https://abreastcancerdiary.substack.com Find Ellyn's blog and AI tool at https://AskEllyn.ai   Kathleen's AskEllyn blog entries are here: https://askellyn.ai/?s=recurrence and here: https://askellyn.ai/di-indol-methane-and-sulforaphane-and-breast-cancer/   The AI breast cancer bestie story is here: https://youtu.be/2euyqULTvFc?si=XR-C1lwl-yu_k68N   And Ellyn's other podcast interviews about breast cancer are here: https://youtu.be/1xiNRT_ODsI?si=lZUbk0jX9g3lJ41l https://youtu.be/iyMI5qAKKBA?si=CHzGd7g8VsBaoXCm   Transcript: My guest today is Ellyn Winters Robinson, my first international guest. She's from Waterloo, Ontario, originally from Ottawa up in Canada, and she's the creator of the AskEllyn.ai blog and AI tool or companion. We'll talk a little bit more about that later. She's the chief marketing officer at Ignition Communications, and she mentors tech startups, and she's been doing so for many years. She was stage 2b and she had ductal carcinoma. Welcome Ellyn! E Oh, well, thank you for having me, Kathleen. K Yeah! Yeah, so you and I have been partnering on the Ask Ellyn blog. I've been a guest blogger. This is my first time guest blogging for anyone and it's been such a nice experience. E I'm loving having your voice and your advice as part of this, this thing that we're building. So very K Aw, thanks. Thanks for being that safe place for me to enter the breast cancer world as a nutritionist. It's a scary thing having had breast cancer. You know, been in the breast cancer community for two and a half years now and kind of zipping my lip about nutrition because it is such a triggering topic for people. I feel like your blog has been a really welcoming venue for me to talk about that in a careful way. I am very aware that it is full of triggers and self blame and shame. So I'm trying to be very, very careful and sensitive and permissive in all of my nutrition advice. I know you started with writing your book, which the name of your book, I love flat, please hold the shame. So that was your first foray into the breast cancer kind of public life. Um, I, I was just reading your book this week and really enjoyed it. So that was your first step. And then how did it, how did everything else kind of follow after that? E I don't know if your, if your followers would know, or you know about something called the butterfly effect. It was actually sort of a concept that was developed for weather systems, like one little weather system can kind of trigger a massive storm somewhere else. it's also, it's a good way of describing what's happened to me, which is just this domino effect of all these sort of, you know, one thing happens, which then leads to another. And it's just been this really crazy journey over the last two, two years, almost three years now. So I'm coming on my three year diagnosis anniversary in March and I, you know, I think where it started was, as we all do, you kind of go through this and it changes you forever and you just want to start giving back. just want to help that next person not have to, you know, go through this alone. And that's really where the, the start of my book kind of came from was I actually wrote it while I was in chemotherapy because I'm a storyteller. That's what I do for a living. And so I was like thumb typing the book as I'm going through chemo, uh, my phone, and I just wanted to tell a really simple story of somebody that was going through it, uh, that was really relatable and not sad and fun and funny and kind of encouraging so that somebody at the end of it would go, okay, okay, you know, there were hills and valleys and bumps along the way, but she got through it. I can get through it. And that's the feedback I've had from the book, which is great. And then, you know, even before I put the book out there, I ended up having this sort of chance encounter with another tech startup founder that I work with. We weren't even talking about breast cancer, but it came up in the conversation and then he was asking me a ton of questions and I sent him my manuscript. And lo and behold, he used that as the basis to create Ask Ellyn. And so, suddenly I found myself with a digital version of me who, you know, this AI knows my story and. She is really smart and understands everything going on in the world, but she also, you know, has all of my personality and experience and emotional responses. And so we launched her, that was about a year ago. She's just had her first birthday in October and, uh, and she's out there now and now I just learned in the fall that she's been selected to be part of something called the City Cancer Challenge, which is organization out of Geneva that is delivering digital navigation solutions to countries in the world, low to middle income countries. And so she's now, too. So, yeah, it's just been this really crazy, you know, ride. So, you know, it's kind of one of those advice I always give to a person when I sit and mentor them is. You know, don't get so caught in your course that sometimes you miss these other opportunities that are kind of, you know, floating down the river toward you. And that's exactly what's happened. It's like, you know, okay, I say yes to this. And then all of a sudden it leads to something else. So, yeah, it's been a really crazy, crazy, crazy ride. K Wow. So, okay. So you did the book first and it was published. The manuscript was then used as kind of a full download to create Ask Ellyn the Robot or AI Companion. And then you started the blog after that? E Yeah. So, we launched Ask Ellyn in the fall and I don't have any marketing dollars to put behind this at this point. That's just all a very much a labor of love. So I thought, what if we looked at breast cancer sort of through a lifestyle lens? So fitness and nutrition and wellness and mental health and intimacy and relationships and family and fertility. so that's what's starting to come together and it's really cool. I've had women from Ireland. I've had, you know, I haven't had, um, uh, contributions yet from some of them, but people have reached out from South Africa. It's just really neat that I'm sort of getting these international voices that are starting to come together. And then there's folks like yourself that can be because you, you have this, you know, expertise that's really important. I'm a big health fan. I, you know, I believe in, you know, fitness and exercise and eating well. Those were all things that were really important to me before I even got diagnosed. And so, um, you know, having that expertise women can tap into, but in a, you know, empathetic, I really get you kind of way versus this. I'm a doctor and you're a patient and you know, it's just a different dynamic. Just women talking to women and very wisdom focused because that's where much of the good advice I was getting was coming from these other women as I was going through this, right? K I found you when you were just launching your book. I found you on Instagram. And so I always identified you primarily as a flattie and your, your identity around being a flattie, um, which you have a beautiful body by the way. I love the photos that you've put online and I thank you for, for sharing something so intimate, um, but yeah, getting to know your blog, I see that you are really trying to be a lot more of a generalist in terms of your, your outreach and the material that you're putting out on your blog. You're not exclusive in terms of your identity as a flattie, but just really trying to support women.   E You know, when it comes to, you know, breast mound reconstruction or any kind of reconstruction, because I consider, you know, being flat a chest wall reconstruction. I want, I've always said I want flat to be an option and I want it to be presented as an option because so many women are, I was completely unaware that that was even a third choice and it was a girlfriend of mine who told me about it. And so I would like to see that changed, but you know, at the end of the day, I want any woman going through this, it's hard enough to go through this, but I want them to feel really good and comfortable. about whatever decision they make. So I always say, you do you. If you want to have, know, implants and go that reconstruction route, I know lots of women who've gone in that route and are very happy, and then some that aren't. And then I also know, you know, women who've gone flat. Obviously, it's a big, happy community out there. And then there's also women who've had DIEP flap surgery as well, and are very, very happy with that. So I'm just like, no judgment here. I will support you. And so I definitely want to incorporate. those voices, those options into the into the narrative of the blog. Yeah, so it's not just about being flat. I'm really happy that I made the decision I, I made. I was watching, the home edit woman, Clea Shearer, who's now having her 8th surgery and is probably going to have a 9th, on her journey toward breast reconstruction. And I'm just like, I just wanted, that was my reason. I just wanted to get on with my life, you know, I don't try to be strident or anything else. I wasn't trying to make a statement. I just didn't want to sign up for tons of surgeries. So kind of, you know, found, and then I, the, the photos that I took, that was just me kind of trying to come to terms with. who I was at that moment, I, you know, my body looked different. I was bald and I just felt the need to kind of capture that place in my life, uh, so that I wouldn't forget it. And yeah, I, I love those images. I love them. K Yeah. There, there's a lot of joy. No. Yeah. So when you said in the title of your book, Hold the Shame, it is such a powerful, powerful statement. Is that in reference, when you think about your own story, is that in reference to your experience with your medical practitioners at all or the social community? Where, where did the shame come from in your story? E It was really an observation, I think more than anything. I was pretty comfortable with the idea of going flat. Um, I was pretty firm in my decision was pleased when my surgeon, like when I took my bandages off and I saw my scars. I was never really in love with my boobs quite honestly. I was a D cup before. Even if I had had reconstruction, I probably would have gone a lot smaller. I was probably more ashamed of myself and more hard on myself before I had breast cancer. Then, as I went through this, I started seeing women that were going through the breast cancer journey were encouraged to be ashamed of themselves. It's almost like the dialogue is, Oh, you've had a mastectomy? Well, don't talk about it, and hide it away. Or, you've decided to go flat? Well, that's like, you're now disfigured, so let's, you know, hide that. And I just, that bothered me to no end, and then I see so many women expressing shame, shamed for their decisions. I fight against my own sort of currents, which kind of might pull me back into sort of those feelings and say, no, no, no, I owe it to the world to kind of be a lot more, public and, you know, within my own sort of comfort zone. But, um, it's important to me that I'm not ashamed and that I not, um, you know, kind of encourage that behavior anymore. So that's really where it came from was, you know what, we should not be ashamed of any of the choices that we make. Um, as women, we should never be ashamed of ourselves in any form. K Yeah. Definitely. I remember reading that your surgeon was concerned about your husband's opinion of what you were deciding to do in surgery. E Yeah, he, he was, um, mean, my husband was present for all the conversations. Um, it was, it was a fairly light comment. Um, I think that's, that's even more so, I mean, there are surgeons that explicitly turn away from their, from the woman, the patient and ask the man's opinion. Um, that wouldn't have flown very well. Um, but, and I was pretty in no uncertain terms, made sure it was communicated to my husband that this was my body decision and that he didn't, you know, if he supported me, then he would support me sort of thing. So, um, but yeah, I mean, I think my surgeon was like, he was just a little taken aback. I think when I proposed the idea of going flat and I remember him sort of saying right at the outset, Cause I had like shed 10 pounds out of stress and, you know, was looking pretty lean and I remember him saying I would "look spectacular with implants." K (Mouth hangs open, silent)   E So it was just kind of, it was kind of a, it was just a guy thing, you know? but you know what, in the, in the long run he was actually really, really good to deal with and was very, very supportive and understanding of, of my decision and I think helped both my husband and I kind of navigate our way . You know, just, just, just through this, whole change. My husband's not a guy who, he's, he's not a guy who deals with change well. At any, in any form. Like, going on a holiday is, it freaks him out. Like, he doesn't like change. And so, having to deal with, uh, you know, the woman that he's lived with and slept alongside for, you for 30 years look different. That's been a really, it's been, it's been a really challenging thing for him. he's, you know, he's continues to work on it. So it's just, yeah, it's, it's a lot, it's a lot, you know, and then you add into that just the fear and the emotional response of, you know, I was never supposed to get sick. Like that's not supposed to happen in the family. I don't think there's nearly enough supports for the guys out there, which is also why I wrote the book. Like I love to hear when women who've read it go, I've just given it to my husband to read. That makes me feel really happy. because the guys are really lost and they, you know, we, we find each other, they won't talk to anybody. So, um, you know, I, I'm, that makes me so happy. Oh K I'm glad that you included your husband in your story. I've written my story down. I don't know yet if I'll publish it or if I'll just hand it down to my nieces and my own folk, but I was really reluctant to talk about my husband because it was such a tender time for him. It was a time of such emotional vulnerability. I really appreciated your including your husband's response, especially you talked about his response to your first photo shoot after you went flat. Um, and that he really struggled with the fact that there were some very physical, um, objects in the world, you know, out there that could be, could be spread around about you. And that was a very private thing to him for your body to be photographed in this intimate way without, you know, a top on, E He was, he knew I was, he knew I was doing the photo shoot. Um, if he quite knew that how, you know, raw it would be. Um, um, I think where, it got a little, where he got mad at me, was, uh, when he found out that the photos ended up in People Magazine. K Whoa, I didn't realize that. Yeah. Okay. So what was his response? E Uh, he got pretty mad. Anyways, he got over it. He got over it. I, I, I argue. I'm like, look, I, I'm so I'm topless in People Magazine. I'm like, I don't have a top. Anyways. I think it's been interesting as I've kind of gone through this and I've gotten out there and it's interesting when you know you'll be out somewhere and somebody will come up to you and they're just like I want to thank you so much or you made a real difference or whatever and if he's present for that it's like all of a sudden he kind of sees it from a different from the outside in and I think it's a little easier for him once he kind of and you know his initial reaction is just to kind of lose loses not a little bit about it but he He eventually kind of comes around and realizes where I'm coming from with this. It's just, it's just hard. It's just, it's just not his nature. He's an incredibly private person. Um, but again, it makes me so determined when I do get, you know, women saying, thank you so much for being open and or I made my decision to go flat because I saw you and you inspired me. Um, you know, that, I mean, as I say, I, you, you do you, but you know, if I can help somebody along on that journey, then that's really cool. Yeah. I just got really lucky. My surgeon did an extraordinary job, extraordinary job with, with, uh, with my incisions. I am so perfectly flat. There's not a dimple or a or anything. And so, you know, I really drew the lucky card. K Yeah. I was really impressed. So those photos in your first shoot when you were totally bald, how far out from surgery were you? E A month and a half. K Oh my gosh. Your even your incisions looked beautiful. Wow. E It was done on May 31st. those photos were done mid, mid August. K Yeah. That surgeon is an artist. That's amazing. E He's a general surgeon, too. And I think he studied under her. So you only had one surgeon, here in Canada, of course, you don't, it's not like in the U. S. where it's privatized and you can kind of shop your things around a little bit. You know, you kind of are just assigned, a surgeon. Here, in, in the Waterloo region where I live, it's a smaller community, just, uh, about 50 miles outside of Toronto. And so, um, you know, obviously our health care, our hospital system is much smaller, and I think there's maybe three, surgeons who do breast surgery here in town. And yeah, there's not that many. And one of them just recently went on maternity leave, so there's even less, you know, so. K Okay, and you said that you had chest wall reconstruction. So does that mean that your surgeon took some of your extra skin and used it for padding in your hollow spot? E No. I didn't even have hollow spots. I just, uh, you know, I, I've always worked out. So I've got some good, good, nicely K Pecs? E Yeah, he didn't have to do any fat grafting or anything like that. It was just, he used stitching, like the stitching he used was Oncoplastic. So plastic surgery type stitching. So it was all folded under. He didn't use any staples. Yeah, and you know, and the other neat thing is, I had surgery at 2 o'clock in the afternoon and I was home here in the house by 7. 30 in the evening. Yeah, so he did a nice job and he did it fast. Because I was home by 4:30. K Wow, that's great. Yeah, that's true of me too with my Goldilocks. People think that Goldilocks is more involved, but it's maybe an hour more total in, in the OR. It's not that much more involved. Oh, good for you, Ellen. I'm, for our viewers on YouTube, I will definitely get some photos of you to put up so that people can see just how beautiful your incisions were even just, oh my goodness, less than two months out of surgery. That's crazy. I can't believe that. E Yeah, yeah, yeah. Yeah, he did a really good job. I just did a flat fashion show with the flat out love folk, um, down in New York. And my daughter went with me and I ended up sort of pulling an outfit or I was assigned an outfit that was actually covered up. I wasn't topless. I would have been fine with going topless in the fashion show if that had happened, but it made my daughter a little more comfortable that I was covered up and so, you know, I just, I try not to be so extreme that I make my family upset about it. So it's kind of a fine line between being there K   Well, I feel like for me, it's a part of my healing. And so I have to get it out of my system or into my system. However you look at it. It's a season. I don't think I'll be healing forever from this trauma, but for now it's a part of my self expression, my new identity, my body love, my self acceptance. E It is really, it is a healing thing and, you know, I don't know about you, but I'm, you know, two, not quite two years out from my surgery and it's interesting now, like I look at myself in the mirror and maybe my husband looks at me and sees me differently, but don't even notice anymore. Like it's, it just, it is amazing how it just becomes sort of part of your physical being and you get to a place like, the body acceptance actually for me came quite quickly. Yeah, it was just more the trauma of going through this, you know, I think it's more, um, some of the other physical side effects that I've been struggling with, you know, just gut healing and emotional healing and that trying to compartmentalize you know, we've already had the shoe drop once and we just sort of are waiting for it to happen again and we get into this community and unfortunately, people do. Get sick and die, you know, uh, and that's anytime that happens and it's someone that you know, that's also hard. So unfair. K Yeah, definitely. You talked about your daughter. Tell me about how her response was initially to your diagnosis. E So yeah, so she was 23? 22, she's a 2000 baby, so she just turned 24. Uh, so she was 22 when I was diagnosed and, you know, I think, you know, um, she was living, she wasn't living at home at the time. She was in college and she was in Toronto. and she had just after I was diagnosed, she fell in love for the first time and she had a boyfriend. So she wasn't home a lot. Um, yeah. When I first told her, um, she shared with me afterward, she, went for a big walk with her roommate and just had a massive cry. Because I think that the first instinct was, well, this isn't happening, you know, my mom doesn't have cancer. Or, you know, she was so convinced that it was going to be fine when I told her I'd found the lump. And when I told her it was actually cancer, and I remember her asking me, she said, are you going to lose your hair? Because, you know, 22 year olds, it's all about the hair. And I said, yeah, I probably am. Um, and it wasn't until a year later and she had moved back home and she and I were sitting talking and she said, I was really angry with you. And I think my husband was too, um, and I said, that's interesting. I said, tell me more, like, why would you be angry at, you know, the lady that has breast cancer? Why am I the subject of anger? she just said, because you're not supposed to be the one that's weak here. Like you're not supposed to be the one that's sick. You're mom. what I do find in my family is, I said, we are, I said, we're like a teeter totter. So when I'm up, everybody's up. When I'm down, everybody's down. We don't balance each other out very well. So the whole mobile kind of went wonky when I fell apart. And, and, and, you know, and she just said like, pull it together, mom. Like she just couldn't understand why I couldn't kind of get it together. I just don't think really anybody that hasn't had cancer can really, appreciate the immensity of the emotions and the fear that you feel. So yeah, so I thought it was really courageous of her to share that with me. And she said she, you know, really thought a lot about it. And she said, you know what, I understand now that I was angry at the circumstance and angry at the fact you got cancer, not at you, but that wasn't how it computed at the time. K So had she not seen you in a position of weakness like that before? E Um, no. Yeah. I'm kind of the I'm the rudder of the ship around here, and uh, and she had a really hard time with me when I lost my hair. She had a really hard time. She couldn't, she couldn't see me bald. She just, I had five wigs, and so I used to wear the wigs around her, and I remember her boyfriend at the time was a very tall guy, he was like six foot five, and I remember being in the front hall one time and having, he wanted to see, and she didn't want to see, so he stood in front of me, so that he kind of shielded her, and then I took my or wing off at the time so he could see my bald head. But yeah, she didn't want to see it. K I remember that you shared the progression of your hair growing out on Instagram, and you were always just really candid and real about it. Just the awkwardness of the different stages, and I really appreciated that. E I think it's kind of, you know, I still do it. I still do, you know, who wore it better. I just, I just, I think I'm going through or I just had, I just had it trimmed. So it's, it's a little shorter now, but I was going through the 1970s rockstar phase. I mean, literally I could take a picture myself compared to like Robert plant and had the identical haircut. So, you know, I kind of, know, so those are the things that I search. When I was going to lose my hair, I was like, what does it look like? And what does it grow back like? And everybody's thinking these questions and the different stages of regrowth and how to style it at different stages and everything else. And of course, mine's come in very, very curly. So that's. kind of a different thing too. So I just, you know, if I can present that in a real way and a kind of a human way and yeah, yeah. So I'm always perpetually snapping pictures of myself just out of bed that's like standing up on end of crazy things. But yeah, I can make people smile. That's always a good thing. K Yeah, you do. You're good at that. Now, I wanted to ask you a little bit about your son. You said in the book that your son was really brave and kind of asked you to assess the severity of your situation and, and tell him. Just how bad it was. E Yeah. K Tell us that story E Again, you know, both the kids were kind of they're very different people. Um, and my son is a very introverted, very, uh, cerebral kind of guy. And so with him, you know, it was the same thing. He was like, I think it was, you know, kind of them working through this place of disbelief. I remember we went for this walk. There's a country inn not far from where we live. And it was early spring, so it was still kind of snowy. And he is a dog, and we took our, our two dogs. But for walk together and I remember him saying, you know, like, well, maybe it's not, you know, like that was kind of the sort of the bargaining thing, right? And then there were little milestones along the way. So, um, they have a little, well, he's now, he's now two. Um, so the little grandson who was born the night, the night before I finished chemo. I remember, you know, my last, my last, uh, trip to the chemo suite and being like super proud and showing these little, you know, brand new newborn pictures on and I have a photo of he and I at Christmas time that year and I'm holding him and we're both bald and it's at some point he's going to understand, you know, and he'll be able to, I'll be able to explain to him, you know, what was going on in that photo. So. Um, yeah, so it's been kind of a really interesting part of the journey, you know, like finding out that they were pregnant and I had just found my lump. And so that whole sort of journey, kind of, of having the grandbaby and, and then becoming parents is kind of really parallel K Well, I want to wrap up just by talking about the blog and some of your favorite entries and some of the authors that you've had come on and what they've had to say E So there's one, she's also a functional health practitioner, uh, also a flattie, and she reached out, and she wrote a piece on sex and intimacy, which is such a big thing, which no one, nobody talked to me about it. I don't know about you, but. It, it's really poorly discussed and communicated, what's going to happen to your body. And there's, you know, as women are diagnosed at a younger and younger age, it's just such a relevant topic. Um, and a woman that I know who was reading the blog reached out to me on Instagram and I shared this, this feedback with the lady who wrote it, but Tracy, but she said, want to thank you for that piece that I felt seen for the first time. And I thought, wow. Um, you know, and then I've had women want to share their stories. So we had one young lady out of the DC area who was pregnant when she was diagnosed with breast cancer and having to go through, I mean, just imagine, you know, being scared out of your mind let alone your unborn child and having to go through that experience. And then, uh, another young lady, uh, she had several losses of, you know, uh, in her, in her fertility journey, uh, has a child now and is awaiting the birth of a surrogate. Um, so, you know, just those are very real. Those are not my experiences because I'm, I'm almost 60. So, you know, having those, you know, stories and being able to, and I think it's cathartic for them. It's, it's just, it's really, I just love it. I just love. And I would, you know, I, I, I just invite anybody that wants to share, share their stories or is a gain their wisdom and sort of looking at it again through all these different lenses, the work you're doing around nutrition is so important, yeah, it's, it's kind of taking on a little bit and I love that I'm getting global response. It's really cool. One of my favorite things to do is I see on my, um, my analytics now I can see. So, where in the world people are accessing this website and it's all just organic at this point. But, yeah, I've got, like, people in Australia and Iceland and it's just, it's really cool. K Oh, that's great. I'm so glad that I can help get the word out that you are willing to partner with folks, even folks that are not professionals, but who just want to share their insight. E That's, you know, always an option that's available and I always am there as an editor for people. So I'm just, I just, just get your raw ideas down, me a voice memo. I'll, you know, turn it into a transcript and the important thing is that people shouldn't feel that, you know, their ability to write or not write, it shouldn't be a barrier to them participating. K Awesome. Yeah, you've got all the technical skills to make things work that way. So that's great. Well, yeah, I'm so glad to help you get the word out about that. And I know you have a lot of stories to share that you have shared on other podcasts about your AI tool. And I will definitely link to those podcast interviews in the show notes so that folks can learn that story. I know you've already talked about it a lot with other, other podcast hosts and other venues, but that's a fascinating story that just blows my mind. E I mean, you know, the big thing to know about Ask Ellen, who's, you know, she's sort of part of this blog and part of the website and everything else is, you know, really the, the thing is that people need to know is she's, she's non medical. So she's really there to be that friend to hold your hand at two o'clock in the morning. She's always going to be gracious and kind in her responses. She is me, like you could ask her a question to me a question and the answers are almost going to be identical because she really truly was recreated out of sort of my brain and she's private. So we don't ask for registration or collect any data at all. I have no idea who's, who's talking to her at any point unless somebody raises their hand and tells me that they're using her. Um, and the reason for that is that we wanted it to be something that was just a really safe space where I always say she's like the Catholic confessional, except there's a priest on the other side as well, to her, you can rage at her. You can ask her the most inappropriate things you want. She's not there for just the patient, but she's there for those family members. for the friends who are like, you know, what do I say? What do I do? How do I behave? co workers and, uh, and then she's always, she will always be free. So that was an agreement that I made with the team that built her for me. The technical team was that we would never, ever want to charge someone to use her. So it's not like for 9. 99 you're going to get to talk to my bot. That's just not going to happen. So I'll find other ways to, you know, Support what we're doing, whether it's through sponsorships or donations , K And for folks who are as far out of the AI realm as I am, just the basic question is, is she an audible spoken interaction? E No, not yet K Is it written?  E Written at this point. It's text based at this point. Um, could she be does the technology exist to be voice? Yes. We just haven't had. Anybody, you know, demand it yet. But yeah, the technology is there. So it would be strange because it could be my voice K It should be! E every language like dialects and Bulgarian and like, it's going to be and I remember telling my husband that and I said, you know what? I said, if I die, you can go talk to me. And he's like, I am unplugging that thing because he's had enough talking to me for 30 years. He was kidding. K Well, thanks, Ellen. Thanks for bringing your sense of humor and levity to our community. I really appreciate it. E Its my great pleasure. It's, you know, life's hard enough. I've always looked at things through the glass half, you know, the glass half full lens. And, so even with breast cancer, you know, I, I don't know about you, but. Like I, I mean, obviously it was like absolutely devastating the first four weeks that I was diagnosed. It was just like a mess, but now I actually look back on it with a great deal of gratitude. Like, I'm still processing stuff, but its brought the most incredible people into my world, incredible experiences. Like, you know, and so, you know, for that, I'm, I'm really grateful. It's too bad I muse about this, but it's too bad that sometimes we have to go through something really devastating. devastating and scary to kind of really start to appreciate how wonderful things are. K well, thanks for taking time to meet with me and my listeners today. We will put some shots up on on the YouTube version and on my Instagram at @a.breast.cancer.diary. What are your handles on Instagram and , the breast cancer version of me is, is also the same as my book. So it's called @flatplease. So you can follow me there. And, uh, it's a really active and engaged community. Uh, and then I'm @ellynjane1 is my, is my other handle and I'm also on LinkedIn if people want to connect with me professionally as well. K And where, what is the website for AskEllyn? E It's askellyn. So Ellen is spelled E L L Y N. Thanks to my parents. So it's, it's askELLYN.ai And there's tons of information up there and it's only going to continue to grow. K And that's the blog, too?   E That's the same web address for the blog. Like when you go to the website, the idea is to kind of bring it all together. Um, you know, I'm starting to do speaking engagements as well. And then the book, you can actually access the, you know, to purchase the book on Amazon, you can purchase it from the website as well. K Well, thanks for all of your contributions to our community. E Aww, likewise!  

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 element of my stroke for three seasons. every time I picked up my blade, every time I was in the water, I was working on a particular aspect and it took me three years to own that particular aspect. I know how difficult as a coach, I've learned how difficult it can be for some paddlers to pick up certain elements, but it just takes a lot of patience is what it takes.   K: Yeah, makes sense. I'm really invested in getting more women out to do this and so I want to ask, is this like a normal sport where the coach is going to pressure you to perform at your absolute, you know, top performance and be extremely competitive or is it more about the social aspect and just being together?   L: That's a great question. I think we get both in every, every time we're on the water. I get the social aspect, which is really not why I came to paddling. I came to paddling for the physical being. I wanted to do something and it really intrigued me that it was, had a breast cancer wrapper, but it was the sport at the gut of it. For me, that's really what it still remains is it's the sport first and then all this other stuff that comes with it. What comes with it is. It's simply the nice casual conversation I have with a woman that's going to be my bench mate that day, that may sit with me, that walks down the gangplank to get on the boat. We hug like crazy. We cry like crazy sometimes when somebody has difficult news. we share in the good news and we share in the bad news with each other. Um, the new trend that's happening across the globe now is a new trend which is the all cancer paddler. And so breast cancer paddlers have been able to be on the water for so long, for almost 30 years. Many times when I've come off the water successful as a breast cancer thriver paddler, others have asked me, spectators have asked me, ooh, I want, how'd you learn to do that? I want to be a paddler. How can I be on your team? And the news we share as a breast cancer paddler is, well, good news is you don't qualify to be on our team because it has to be all breast cancer survivors. But they'll say, well, yes, but I have lymphoma or skin cancer or, uh, you know, name the number of cancers that are out there. And what about me? It was the what about me, listening to people say what about me, that encouraged me to start another team that allows for all cancer as well as for men to participate. And that's really what I'm here to recruit to today is that we would love to have more women and more men for that matter, but more women in particular that would like to join the Rose City Rockets and just enjoy the camaraderie and then learn the sport. You feel so, um, empowered. It's incredible. I, that experience I would want for anybody, no matter breast cancer or not.   K: Yeah. So how does someone join? Do they just show up and start?   L: You can, you can. It's better to have a mentor like myself to help you get rolling. So if they contact me, I'm happy to get them all the information that they need. But basically for Rose City Rockets, we paddle on the Willamette. We begin March, which is coming up very soon. March 11th is a Tuesday. We wait until a daylight savings has happened and kind of brighten the sky up for us in the evenings. So we're there in the evening. We meet at 5:40 PM. We have 20 minutes of warm up then we get on the boats and I'm there with you as we have other coaches as well. So it's my self. I'm an advanced United StatesDragon Boat Federation Advanced Level Two Coach. Um, there's not very many of us, um, here in the West Coast in particular. My husband's also an advanced coach. And then we have other coaches that are on our squad as well that can help, especially the new paddler, get comfortable and teach them some of the very basics. You can't be wrong. You can only be right. We find a lot of wins. Uh, that's one of the things that I get complimented about specifically. is about how I'm able to help the paddler, find that value in what I'm teaching, be able and feel comfortable enough and confident enough in trying it, and failing. Cause you aren't always successful. Sometimes we fail at the things that we're trying, and that's okay. We can't expect, all of us cannot come to a new sport, or a new anything, and expect mastery. K: Absolutely, if a woman was looking at joining, let's say this coming March or, or next March, what muscle groups would she want to start working on? Would she do pull ups, push ups, tricep dips? L:   There's a great number of exercises that we have that are specific to paddling and you've hit on most of them. So what we try to do is keep our hip flexors. Moving and flexible. So we do some great squats. We might do some hip flexor work prior. You know, some stretch, some static stretching there. And then get into more dynamic moves. So static is you're holding a stretch. And dynamic is activity, right? For those that don't know the difference. And so if you were to start out with, exercise bands and work on simply stretching above your head, stretching behind your shoulders, getting your shoulder blades down into your, back pockets is what I call it. So basically working on that back, working on back muscles, working on your shoulder muscles, um, lats, core um, your, your core. That's probably where you're going to go. It is a full body workout. So we're going to go literally from toes. To the head of your top of your head is going to be working when you're in the dragon boat sport So we'll work on those things. A lot of people think I got to have strong biceps Or I have to have strong upper body, um, physical strength in order to be a good paddler. It's not true, but I will say this, over the years I have developed bigger shoulders and bigger, yeah. So I have bigger back muscles and bigger shoulders than, than the average woman probably does. And certainly from my body style when I started, I've changed. My body has changed. To, in a good way. In a positive way.   K: So it sounds like, more like a crew kind of setup where you're actually using your legs to push when you're paddling. Okay, I didn't realize that.   L: That's right. So we have contact. It looks like we're sitting there, but actually we have a specific way that we place our feet and we utilize pressure on the bottom of the boat to do to go forward and to go backwards. You know, so we basically are doing this rotation while we sit, we rotate out to the catch to put our blade in the water, and then we do you rotate what we put pressure in the water to pull the boat forward. And so it's basically that's what we're looking to do is how do we pull the boat forward to get to the finish line. There is a lot to do, to paddling. I would say, I would, for a new paddler, try not to get too excited about those details. let me talk about clothing. So, of the things that people like, need to be experienced in gathering together before they come down to the water. So they're going to get physically, you don't have to be a physical specimen, a fitness specimen, you don't have to come out of the gym and be on the water. You can come to us just as you are. And then you're going to, you'll learn quickly about where your deficits are. And we can work on building those up. but everybody's got them. So don't feel like, well, mine's worse than everybody else's. It's not the case. Um, so you come to the water, dressed in layers. We use a lot of dry fit. So that's anything that you can get wet, and that can dry. So we use, um, no cotton. No cotton on the boat. I come with leggings usually that are dry fit. Everybody's got yoga pants or yoga leggings that they can start out in, and then you layer from there. So I'm going to have waterproof shoes on, or at least shoes that I can get wet. I use a Keen. Keens are very popular here in Portland. It's a hiking shoe that has water cut outs in it. They are used by most paddlers in Portland. And you can wear anything you like. Uh, waterproof shoes have become more, uh, tennis shoes have become more, available So people are using those now, too. And then from there, we're using a layer, a system of coats. So it's one long sleeve shirt. That's dry fit. Then I'm going to put a light jacket on that and then something waterproof over the top. And that's going to take me through most, most weather, most weather conditions in a hat of your choice, right? basically what you need to come on the water. Uh, we use, come with water because we need to be hydrated while we're out. we start on the, uh, practice time for Rose City Rockets. We practice from six o'clock until seven. We get off the water at seven and go home and then we'll see you again on Thursday. And then we do it again on Saturday morning. 9 40 a. m. And then we're out from 10 o'clock to 11 o'clock. The nice thing there is a social aspect on Saturday mornings in particular. There's a little, restaurant called Little River Cafe that's very close to where we are, where we go out to the river center marina and it's part of one of those restaurants that's local they're very good about our paddling gear, you know, dripping all over the place and they have coffee available. Also serve a nice breakfast and it's filled with paddlers on Saturday morning. So we have a lot of people sharing stories talking about the water and getting, you know, we recognize all kinds of other paddlers that are down there. Because we're, I've been part of that community for so long, that I know paddlers on every team, I've paddled with every team, almost, I've raced with them, um, so there's a lot of, a lot of that camaraderie that's there. It's, it's super fun.   K: Do you think that most cities have room on a breast cancer paddleboat team at this moment in time? Like, is there room for people to join?   L: I think they're always recruiting. There, there's a challenge, uh, with breast cancer teams, in particular. And, and it would be, hopefully it's true for our all cancer team as well. Now, all cancer, I'm saying that's our, Rose City Rockets--there's probably 50% of us that are breast cancer survivors. Yeah. So there's only room for 20 paddlers, right. So, if I have 20 that come out that's great, but I usually have 24, right, 21. So I've got a boat, I'm always growing. So you might find a team in a particular city that's already at capacity, they're managing. They'll figure out a way to put you on a boat. The way we work it right now is that we only have, a boat sits 20 people, 20 paddlers, 2 by 2. Right, so they sit like pistons in an engine, and everybody works together as one, going down the water. Um, the Rose City Rockets are only about 14 of us that are really Rose City Rockets. Then we have supporters that are helping us from other teams. That are not, that are not all cancer survivors. They come to us and help us fill in. Because as we continue to grow our team, we need to get on the water. So we're just reliant on other people to help us. And sometimes I have to go help a team do the same thing. Right? So it's about helping our community members, all of our paddling members, get on the water.   K: Where would someone go? Is there like a national hub where you're looking for teams with openings? L: There's two of them. So the one for all cancer teams is the best resources to go out to the U. S. DBF. The United States Dragon Boat Federation has a great website out there that can show you all the breast cancer events that are taking place might be specific to breast cancer across the country. And then there's also one, a tab also for all cancer festivals that are happening. It also, there's another tab there that will show you where the teams are located across the country. I think for me, when I, as an example, if I wanted to travel to Denver, Colorado, and I want to see if there's a Dragaboat team there that I can paddle on. The first thing I might do is Breast Cancer Teams, Denver, Colorado. And I'll look for teams there, and if one shows up, I'll contact them and see if I can come and paddle with them. They're very accepting. We, again, it's a great big global community. And if somebody's traveling to a particular town, we're going to try, if they're visiting here, we're going to try to get them on a boat. Because it's, it's just fun to do. And it's part of our story, and it's how we build the community as well as our skills as paddlers. Being able to get on a crew with any team across the country or world. So that's another one way to look at it. Um, and then getting on Facebook is a great way to search. There's so many teams. I know that people are moving away from Facebook for a thousand reasons. And it happens to be where there's a lot of information regarding dragaboating. So, can't just throw it away. That's a great site to go into and just start looking. how I would find somebody a day if I wanted to paddle in any city in the country, I would look that way first.   K: So the keywords would be dragon boating and dragon boat team, probably? L: if I'm looking specifically for, that would be for any dragon boat team, and if I want to find something specific to breast cancer, I could look on the USDBF site. Or, I could look at another one, I'm going to give you another acronym, IBCPC, it's the International Breast Cancer Paddling Commission, International Breast Cancer Paddling Commission. It's the overarching organization for all breast cancer crews globally. So it's a way to see who's building teams, what's happening in your community, what's happening in a particular part of the world that you might be interested in. I've done some outreach helping, uh, paddlers start giving a great example, a super duper story that I love. I was in Argentina with a group of women, all breast cancer survivors that I've paddled with. And that group, there was a team of us of about 10. We traveled to Argentina, we went to Nahuel, and we met, we had to put on a festival. And we trained, I think about 48 to 50 paddlers. women that were living in this very remote area, basically it's Patagonia, had learned and were learning to paddle in their kitchen chairs by themselves with a, with a broomstick. And they had never seen a boat the day that we showed up there. And it was so much fun to see these women, breast cancer survivors all, some super young, beyond young. It's incredible when you travel to other countries and see how young The women that are being diagnosed are. It's a sad fact. sure it's true here for the U.S., but you see, they're out more publicly, I think, maybe in other countries. I don't know, but I'm running into them there. Anyway, um, so they're learning to paddle with this broomstick in a chair. so we started out that way when we started training them in Nahuel in Patagonia. This is two years ago. And then got them in a boat. It was mayhem, chaos, exciting. And by the end of that day, it was a lot of tears shed and just an emotional I've never experienced anything like it. The women were so grateful. We were so proud to be able to share this sport. And at the core of it was just female energy. Just women, loving women, for the sake of loving. It was incredible. I just ran into somebody from there just a week ago. Uh, that knew me from that experience, and we just bawled our eyes out when we saw each other. was just, you know, and unexpectedly, I didn't expect to see her, didn't expect to cry my eyes out when I saw her. It was just, I'm still carrying that around. So it's those kinds of little pockets. life that are happening through dragon boating that are incredible. That's why everybody needs to get on a boat.   K:   I have two more questions about Dragon Body before we move on. One is, for those who are in debt because of their breast cancer medical bills, how much of a cost requirement is there to join a team?   L: It's a great question. So it costs money to travel. No question. Right. And a lot of our teams do travel. There's some of that, but it shouldn't be what stops you from getting on a team. pink Phoenix is a great example. That's local. Same thing with, um, Rose city rockets. It's true for. I can think of a number of teams that it's true for, for here in Portland, that have scholarships available, for one. Um, it's not that expensive. Our fees for the year just to paddle, that's to get on the water three times a week, is 210 for the year. Uh, you can't get a gym membership for that. you can't get a, just a class, any one single class anywhere for that, for a year's worth of paddling three times a week. We have, we have gear, right? So you don't, we do wear a PFD, uh, paddling, uh, flotation device when we're on the water, so to make sure that we're all safe, and that's required here in our waterways. Uh, but we've got them to borrow down on the dock, so there's lots of ways you can kind of limp your way to, uh, paddling, and you wouldn't be alone. If somebody didn't have the money. wouldn't be alone coming in there with not having a lot of equipment or not really having a lot of cash. Um, we had a paddler last season that paddled with us. Um, well actually we've had many that are on scholarship. Um, there are ways. So if somebody lets me know that they want to be a paddler, I can find a way to get them on the water. It won't be a financial burden. To travel is another issue, but there's still lots of regional paddling that can be done. You know, where you carpool with somebody, that you share a room with somebody, you know, that you just do a lot of cost sharing and cost savings in that way. And you'll be surprised how, how inexpensive it can be to get to a venue. here in Portland would be Ridgefield, Washington, to Salem, Oregon, to Um, Vancouver Lake to, uh, where else can you go That's, there's several right there. You know, that people can attend. K: I was wondering, so I just started a local walkers team to do relays together year round, similar to what you're doing, a little bit less intensive, but one of the, so I named it walk away from breast cancer. I thought that was a clever name. And one of the gals that signed up said, um, She liked the name because she doesn't want to get together with other breast cancer survivors to talk about breast cancer. Is that kind of how your culture is? I kind of feel like it might be similar for you.   L Very similar. And it's funny because there's a lot of resistance for women to be in a support group, right? I mean, so it's like, I don't want to get in a support group and talk about my. 3B and my, you know, and get into all the details about how many lymph nodes I had removed. While it's important, while it's important information, it is times we share that personally, one on one, when some weird thing has happened for somebody. Hey, I've got to go in and have another scan done. Something popped up on the last scan I had, I'm going in. It might be conversations like that. But the core of what we're doing. It rarely rarely comes up. It certainly doesn't come up on the boat. Um, we paddle. That's what we do. We paddle, and our goal is to paddle like every, if you will, like bodied, you know, or fully capable body. So that's one of the things that does happen, is that, know, we have the restrictions. I have no pectoral muscle on my right side. All removed surgically. I have nothing. How am I paddling? Well, I'm paddling because my other muscles are compensating. But I have a lot of scar tissue, so I've got a lot of issues that happen for me as a paddler that I have to work through. But that's just what happens. I may need a seasoned paddler or a seasoned breast cancer dragon boat paddler to help me understand what I need to do to accomplish what I'm trying to accomplish, whatever that task is. And so it might be nice to be able to talk to somebody about my specific problem, but it is not the core reason we're together. So, talking about the walking away from and not walking into a support group. I think that's really it. I think that if we weren't able to say that, I don't think we'd have the women that we do on our team. I can only think, honestly, of about three or four women that I know that are there for support first and paddling second. And that's saying something. I know hundreds of women that paddle.   K:   Okay, so it is available if you want to talk about what's going on with your, your current situation, but people aren't dwelling on it. They're not dwelling in the past. They're walking through it and walking away from it kind of.   L: Yeah. And before we go off dragon boating, I wanted to say, you know, we were talking about recurrence was one of the things I wanted to bring up… So Dr. Don McKenzie, I'm going to circle back to him for a second. Right. So the science that he had about, yes, you don't get lymphedema when you paddle, went beyond that. He's continued to do research in these past 30 years, focused on breast cancer survivors specific to dragon boating. And he's found out all kinds of things, but one of the things that's happened with him is that he's determined, and there's science out, you can find these, I think these are published papers at this point, where you're, he's through a prescription is suggesting weightlifting while you're doing chemo. So actively getting very physical while you're doing chemo will keep, reduce your symptoms through chemo and also may reduce your chance of recurrence. This is where the science really becomes important is that it's not just, us talking about it and saying that, yes, this happened to me. we're really talking about scientific evidence where I paddle and I am limiting opportunity for recurrence. I had a stage 3B aggressive cancer diagnosis. I had a 20 percent chance of survivability. I had only one wish when I had my diagnosis, which was to see my granddaughter. Which I had none. My daughter wasn't even, you know, not in love, didn't have a relationship. And I had all these things that I wanted to see and dreamed about having. It was just a prayer. All those things have come true because I've been able to survive and thrive over these last decade and a half. I'm telling you, it's because of the nutrition, because of the "Walking away from cancer" that you're talking about. And dragon boating being on the water. So there's a lot of, a lot of data that's out there that show you that you can re reduce your recurrence. Can you do it with other sports? Maybe. I don't know but I can tell you that it's proven in dragon boating. So they've got showing that breast cancer survivors can have, you know, can reduce their recurrence. Blood cancers are also there as well as colon and prostate. They have data on all of those particular types of cancer as regarding dragon boating. It's pretty exciting.   K: Yeah. Absolutely. And I'm, and that's why I'm moving in that direction with the podcast. I wanna learn more and more about different ways to do this with this exercise oncology concept. It's proven with walking too. So that's why I'm doing the walking and the relay teams myself.   L: I think walking is such a key piece when new paddlers are with me or I'm getting ready to get back into full blown season, which starts again in March. I did my first half marathon and it was really wasn't so much about the half marathon It was about training for dragon boating. So I always had everything I do always seems to be geared towards being better physically so that I can do better as a dragon boater.   K: That's great. It's very inspiring. L: I'm aging, right? And so that's the other thing that I, I coach an older team, a master's team, and there are women and men that are , 60 to 90 that are paddling. And what I, what I see about myself and what I see about senior citizens is that they change their, their stride as they get older. And they're basically taking their strides like this and they start to widen it out because they're widening their stance so that they don't fall. Right? So it's all about. Stability and stability exercises and there's quite a bit of that that goes on in dragon boating exercise that's very helpful that can help me long term for my whole life. So, stability, functional exercise, all of that is part of this can be achieved through this dragon boat sport. K:   Okay. And you mentioned the full, full blown season. It starts in March. Does it end in the fall and take, take a break for the winter? L:   To the end of October. So, for here, it's tough to be on the water. Unless you've got light. And so we try to as soon as this daylight savings happens on either end of the spring or fall, we get off the water. Not to say that we don't paddle in the evening, late in the evening. 'cause we do, we still go out for all kinds of reasons in the dark. Um, we went out for Christmas ships this year and did we do some fun things like that? We were out for light up the night with the lymphoma organization, a dragon boat lit up on the water while the pa, the walkers went across the bridge. It was, it was quite something quite moving.   K: Beautiful. Oh, it sounds like such a great community. It's very attractive.   L: It has a lot to offer. All ages. All ages. We've got a new Dragon Boat member that's just joining. Uh, she's in her 30s. Just turning 30. Um, you talked to our friend Danyel that you mentioned. And so, Danyel's young as well. It's a big, wide group of women. interesting to have friends. I've got friends that are in their 80s. I have friends that are in their 30s. I don't know how else I would have such a broad variety of women if it wasn't for this.   K: Yeah. Well, I wanna talk a little bit about some lessons you've learned in your own personal story and what you would, the kinds of advice that you would give to a, a new breast cancer patient because of what you've been through. You've got 17 years of perspective and experience at this point. What do you tell folks when they're struggling?   L: At the beginning? Well, I think it is a struggle at the beginning. I remember very easily, and I can just, in a second, can get there. Remember Dr. Love's giant book that she wrote on breast cancer? Where I was working, there was a bookstore right across the street. And so on my lunch, I would go over right after my diagnosis. I didn't have my prognosis yet, but I knew I had breast cancer. I went over to the bookstore on my lunch, and I would open that book, and I started to read it. And I couldn't get all the way through it because I started to get into details that I couldn't fathom. Having a mastectomy, having, losing my hair, I mean some of those things. I couldn't fathom it. And so I'd have to close the book and I'd go the next day. I'd start again at that same spot and move forward. I mean it's just you can only get so much information into your soul time. So all of it just seems like drinking out of a fire hose initially. And then finally you kind of wake up to something you know you've probably heard before. But now it's important to you, right? You, you don't really know what it is. You dismiss it and now it's, now it's here and it's real for you. Um, our walk through breast cancer is different for every woman. You know, some women that have a stage one, when they talk to a woman that's got breast cancer, you know, they make aplogies and excuses, and I'm sorry's that, "I'm sorry to talk about my stage one cancer. When you've got stage three." That's kind of a silly thing. I mean, I understand when women say that, but it's really silly because you find out over time that our treatment, may be very similar in some ways between our stage 1 and stage 3B. You may still need a mastectomy, I did need a mastectomy. Um, you may not need chemo, but I needed chemo. So, I mean, our treatment plans may be somewhat different. The women that I tend to have the most to say to are the women that are, have a similar diagnosis that I had and prognosis, which I did meet women that were stage 3B that were, ER, PR positive, HER2 positive, like I was. There happened to be a drug that was relatively new, Herceptin, that had only been available just in a few short years prior to my diagnosis that I was able to take. So, you take all of these elements, modern medicine, all of what it had to offer me, so mastectomy, full radiation, you know, as many radiation treatments as I had, so I had the full spectrum of 34 treatments, it's the max you can have of those, I had a double mastectomy, I had chemo for a year because I had Herceptin infusions for a year after my primary care or my primary, um, chemo. Then I took oral medication for the next 10 years after that to, um, several different ones that I took that finally were for tumor suppression. One of the things that I think was unique for me is I did everything that was offered to me and I did all the Eastern medicine as well. So I did Reiki. I did acupuncture. I Had a prayer circle that take, you know took care of me worldwide I had a prayer blanket that had been created for me during my treatment that I wore as I slept So, I mean I did everything Um, and probably would have picked up a rabbit's foot had there been one available. I mean, you're just doing everything you can to survive. And that's what I did all of those things and I kind of inched my way out of treatment, you know, did all the things. Is it fun to go through treatment? It isn't. But I did meet women in that time of my life that had the same prognosis that chose not to do treatment. Chose not to do Herceptin. Chose not to do treatment. Chose not to do Herceptin because they were afraid of a side effect. And they ended up dying within a few months after we met. And so super sad. It. was a fear about something happening with her heart that stopped this one particular woman. My same age, my same prognosis, everything. And literally, in my, the way I look at it, kind of willed herself to death. She said, I'm out. I don't want this. I don't want to be in this treatment. It was too much for her. So, I think that. And she had a good, you know, she had family support. I don't know why her walk was so different than mine, um, but it was. And so I say to women, do the treatment that's suggested. Do all of it. In my 10 years of treatment? the times that I was dragon boating and super sore from all the work I was doing. My joints ached, my bones ached, from the treatment, you know, from the oral medications that I was taking. But I did it anyway. But I took it anyway. I soak in Epsom salts, I take aspirin or I take Tylenol or some other thing before I get on the water. After I get on the water. Amino acids before and after I work out because it reduces my muscle pain. You know, there's ways that you manage through this. Um, it does take some gurus, you know, to help you figure out how to do it. It's nice, but it's available online too. You know, breastcancer.org, I don't know if you're familiar with that organization. K: Yep. They have a podcast too.   L: Yeah, and, and so I listened to that, especially late at night when everybody was in bed. And I had nobody to talk to and I would wake up with that fear or that new, that kind of question that I had. Um, You know, all kinds of questions that come up about treatment. Um, how are you gonna feel? Nausea, can I work all, you know? What about, uh, short-term disability? Those kinds of questions can be asked answered. looking at breastcancer.org, is this a great site for that? So in the middle of the night, I would get out there and search for something and get an answer. It was a great forum for that reason, you know, if women hadn't got out there before me and been willing to put their life stories out on. That location or be in a podcast like this. How are we going to get this information?   K: Yeah. Did you ever finish Dr. Love's book?   L: I did.   K: It's a big one.   L   It's a big one. It's a big one. I finally bought my own copy and had it. You know, it's, uh, it's one of those things. A hard copy is something that's interesting because all of it's available to us online today. So you don't really need a hard copy of anything, really. Uh, but I did have a hard copy and I had that with me and visible for a while. And then I got rid of it because it was some kind of a reminder that I didn't love. But I'll tell you, want to know how I, what really saved my life? I believe this Well, so when I had chemo, I had been reading and studying about, I don't know if you're familiar with this science, this Japanese writer that did the science about what happens to water... K: Yeah. Negative ions.   L: Yeah, negative or positive. So I've been doing a lot of reading about that and I thought to myself, okay, I've got all these chemicals that are in this chemo bag that I'm going to be infused with. And a lot of women are saying, I don't, you know, that's a chemical. That's, uh, that's death. That's the devil. It's called all kinds of things. And, you know, it's going to get into my body and they have all these negatives about that chemo. So what I did is I changed the structure of what was there by writing on the outside of the bag. And I wrote love on the outside of that chemo bag every time I had an infusion. So instead of having an infusion of something that could kill me, even though that was the point where I was to kill the cancer cells, I was being infused with love. And. I think my mindset around that infusion really mattered. I had a friend that was in treatment, in recurrence, desperate and she was in her late stage and it was funny, great girl, 34 years old, very young, not going to survive, right? But there she is, struggling to do it. And she was still doing treatments and could do her, even do, take her chemo bag off site and do it. She was something else. But anyway, I told her about that. I said, you need to put love on there. So whatever's important, you put it on there. Whatever's important. She goes, well, what kind of stuff are you talking about? I said, important shit. I'm talking about the important stuff. Whatever's important to you. So that's what she had written on her bag was "important shit."   K: Yeah. Oh, the beliefs are so important. I believe that with all my heart. Yeah. And so are the positive wishes and thoughts and prayers.   L: Oh, my gosh, all of that. I never discount it. You know, um, I had cards that would show up at my, in my inbox, you know, from home, from third graders, from some elementary school that I didn't, never met, didn't know them, and they had written me a card. So there was a lot that goes on, being open to it. Open to any kind of treatment, open to any kind of positive feedback that you can take it. K: it reminds me of a story I always tell about my acupuncturist when I first started having the symptom of bloody nipple discharge, which is a common symptom for breast cancer. And they couldn't find any breast cancer when they went in to do the biopsy. I had no diagnosis, but I had still this bloody nipple discharge. And of course, The conventional medicine oncologists were freaking out and like, what do we do? We have to do a big excisional biopsy, blah, blah, blah. But my acupuncturist wasn't freaking out at all. He said, you know what that discharge means is that your body is cleaning out those dead cancer cells that you are killing because you're so powerful. You're so effective at getting rid of this cancer. And he was saying this with a smile on his face. He was relaxed. He wasn't in a panic. And it's such a contrast. Both are true, right? They're. They're both true, because you do need to be worried. You do need to be vigilant and keep doing the biopsies until you find it. But you also need to be proud of yourself and the fact that your body is a cancer killing machine. L: Yes. Yes. And then you also stay vigilant. You know, that's such a key piece of that. I had to chase my cancer down too. Um, didn't, wasn't, didn't show up, didn't show up in my breast. I went in for a regular breast cancer, um, mammogram and they saw something, it was interesting, saw something reactive. It was sent off to an expert. He says, no, just, it's just a lymph node. So it discounted what it was that I had, right, well, what they had seen. So said it was reactive. Set it, set it aside. Six months later, I was at my physician again, my gynecologist at that time, and said, said it to her. Hey, what about this? She goes, we need to go back. Let's go back and have it done again. Second time, still nothing. I found it myself on my ribcage, on my ribcage. There was a lump that I had about three ribs down that I happened to find in the middle of the night one night, and it And that's where it ended up sitting down and I, cause I knew that something was up and found it there and that's what ended up being, um, biopsied way down here, down my ribs. And then they, they were able to then find it because they couldn't find it. It was actually sat in the middle of my chest on my sternum, which is how it got attached to my pectoral muscle. um, and which is why I had to have the whole thing removed. And then others that, find it themselves or that mammogram that really does work. So absolutely need to have the mammograms even though our two stories were always quite a chase.   K: Yep. Absolutely. Yep. They're both true. Anything else that you had wanted to come to share?   L: I think that I'm excited about, um, women and men, um, that might come join us with Rose City Rockets. We need you, right? We need your enthusiasm and your, your good vibes and bring them on down there. We can take care of you no matter if you're an athlete, a retired athlete, want to be an athlete. we've got a place for you.   K: Oh, that's great. I love the openness of it. I think part of what intimidates me about athletics is that it's like stepping into that competitive space can be really intimidating. So thank you for making it a welcoming place for people.   L: You're welcome. You're so welcome. That's what it takes. K: I will hope to see you on the river soon or on the lake, maybe when I'm paddling by in my kayak. L: Yeah. I'd love to see you out there and tell, we'd love to hear more about your walking group too. Sounds like a great time.   K: Okay. Yeah. All right.   L: Great. Thank you. Thanks for your listeners too.