Episode 28: From Diagnosis to Advocacy with Rory Zura

Ever found yourself standing on the precipice of a battle you never signed up for? Join me, Jamie Vaughn, as we traverse the battlefield of breast cancer with the fearless warrior and survivor, Rory Zura. Hear her tale of triumph over this aggressive disease and glean insights into how she turned adversity into advocacy with her venture, Foobs and Fitness. Be a part of this remarkable journey that underscores the importance of being proactive, seeking professional advice, and staking a claim on your health.

In an age where Dr. Google seems to have all the answers, our conversation steers towards the value of expert advice and the risks of self-diagnosis. Hear from Rory about the often-overlooked complications of breast cancer treatment, including dehydration and more. We put a spotlight on the little-known side effect of cording following mastectomy, and how Rory battled micromets found in her lymph nodes. Prepare to be swept up in her resolve to face her reality head-on and her relentless pursuit of the right to make informed decisions about her treatment.

We also dive into the world of support systems and how they form a lifeline during the cancer journey. Find out how businesses like Foobs and Fitness, online communities, and loved ones can play a pivotal role in your fight. Explore with us the significance of self-advocacy, especially when managing conditions like lymphedema, and how simple routines like lymphedema drainage exercise programs can shift the scales. This conversation is not just about surviving cancer; it's about thriving, finding your voice, and empowering yourself to ensure that every step you take is a stride toward victory.

Contact Rori:

rori@foobsandfitness.com
IG @foobsandfitness

Resources:
Lymphedema Drainage Exercises 

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I am not a doctor and not all information in this podcast comes from qualified healthcare providers, therefore may not constitute medical advice. For personalized medical advice, you should reach out to one of the qualified healthcare providers interviewed on this podcast and/or seek medical advice from your own providers .

Transcript

Speaker 1: 0:01

Welcome to Test those Breasts podcast. I'm your host, jamie Vaughan. I'm a retired teacher of 20 years and a recent breast cancer survivor. My life has been pretty nutso for over a year and many of you most likely know just how overwhelming this diagnosis is, and the more I can help empower women, the better. I launched my podcast on June 11, 2023, which was the one year anniversary of my diagnosis. It has a healing mechanism and have made it my mission to help shorten the learning curve for future diagnosed breast cancer patients and their caregivers. I want you to know that you are not alone. I was told from the very beginning that being diagnosed with breast cancer opens us up to the sisterhood of all sisterhoods, but some people need that extra help and encouragement and all of the confusing and many times, downright scary information they are being flooded with. I've been interviewing many survivors, caregivers, oncologists, surgeons, nurses, therapists, advocates and more in order to provide much needed holistic guidance for your journey. Breast cancer is such an epidemic, so the more empowered we are, the better. Now let's listen to this next episode of Test those Breasts. Well, hello, friends. Welcome back to this episode of Test those Breasts. I am your host, jamie Vaughan, and today. I am super stoked that I have my guest, rory Zura, on my show. So Rory has an interesting story.

Speaker 1: 1:32

In August of 2020, during the height of the global pandemic, rory not only had just been let go from her job, but she also became diagnosed with an aggressive form of breast cancer called triple negative. She knew this day would inevitably come through and she had a long line of people in her family with various cancers, especially breasts, and only a few years prior, she tried to get preventative mastectomy. Unfortunately, she was denied for not meeting the criteria set forth by her insurance company. Channeling her lifelong athleticism, she knew she would have to be at her strongest to take on this fight of her life. During fitness, during the duration of her treatment and beyond, rory founded her company Phubes and Fitness to help bridge the gap between the medical world and the fitness world. She's on a mission to educate and empower others in taking back control over their lives.

Speaker 1: 2:30

Well welcome, rory. I am so thrilled that you're here. I have to say that I always tell people I'm starstruck, because I know you think it's super funny. Obviously, when I got breast cancer in June of 2022, I finally got onto Instagram because I had started my podcast just last year. I started it thinking about it. Last February I got on Instagram test those breasts and I was making all kinds of connections and you were one of the first people that I actually made a connection with. I started watching your videos and just all of your posts and I was really really drawn to you for a myriad of different reasons. Then I found out more about your story. We had a lovely conversation and I just really am happy that I'm connected with you and we can be part of helping other breast cancer patients out there.

Speaker 2: 3:22

How are you doing today? I'm doing good. It's a great day today. We finally have some nice cool fall weather and I'm over the heat. I'm very happy right now.

Speaker 1: 3:34

Totally. I'm super happy without the heat too. Here in Reno Nevada we have a beautiful fall. Most years we have beautiful fall. Well, good, look, we really need to talk about the issue, the topic that you have for us today, because it's mind-blowing, it's baffling and it's maddening. I'm just glad that you're here to bring awareness. Can you share a little bit more about your breast cancer journey and your whole issue with not being able to get that mastectomy because of insurance? Yup.

Speaker 2: 4:07

And insurance. The thought of insurance is great to make sure we're insured to be healthy but I don't view insurance as a health requirement so much anymore. My view on that has changed because of breast cancer. My journey started when I was in my 20s. I'm young.

Speaker 2: 4:27

I don't know much about breast cancer besides seeing my family be sick, bald, getting amputations, and it's scary. So I found lumps as I was younger and I was always told you have dense breasts, you're going to have cysts that come every now and then. Do yourself exams, be aware, bring us any issues that you might find, and I was always very vigilant, even before feeling on the first was a thought in my mind. I was constantly feeling my boobs, I was always feeling myself and on that same topic, I also feel like it's important for your loved ones to understand this as well. My husband is a ticicular cancer survivor as well, so he knows the world of cancer just as much as I do now. But since he had gone through cancer before me, knowing that I was constantly hyper aware of all the cysts that would come and go helped him keep me in check. I'd find cysts and I'd make him feel it and I'd be like, oh, my God, is this? Do you remember this one? Because your memory is better than mine and it would come and go when he would remind me you're getting your period soon, see how things go, and up until 2020, he was always right. But when I got like over my job and I was going on all these job interviews, I was in the shower, found that lump and I freaked out because we're in the middle of a pandemic immediately went to him and he's like you're getting your period soon, don't worry, see if it goes away. And for the first time in my life it did not go away. So that's when I knew something was wrong. I kind of feel it in my core and all I could hear in my head was you knew this day was coming. You knew this day was coming. At that point, I wish I would have been more vigilant on protesting the insurance companies and being more advocate of myself, because I didn't know any better back then and I want people to understand it doesn't matter how old you are. Your doctors are working with you. They need to have open communication and, unfortunately, the world that we're in, in the United States, it does come down to insurance companies, but still, you can fight things, you can protest, you can do something if you want it, and I wish I would have known that back then.

Speaker 2: 6:45

But leading up to where we were in the pandemic the day before my second wedding anniversary is when I got the call from my gynecologist that I had been diagnosed officially with triple negative breast cancer. And I tell people my journey started them, but really it started in my 20s when all this was happening to me. I just started cackling like Joker style, creepy, laughing, like I'm pretty sure my doctor thought I had a psychotic break. But I just kept telling him like I told you, like this was going to happen. I knew this was going to happen. I knew this day was going to come. What do I need to do now? Because now I don't need to deal with this.

Speaker 1: 7:23

Yeah, those insurance companies and you're right, because I just got finished fighting with a bunch of other advocates about the deep flap surgery with CMS, and so I know the power of the people and the power of our voices do work. And so, even though you have to look back and think to yourself, gosh, I wish I would have been able to advocate for myself a lot more and better back during that time period. Normally in your 20s, you're not thinking about any of these things. You're thinking about the next good time you're going to have with your friends and the next boy or whatever it is. That's what you're thinking, and so bringing this awareness to younger women now is so important, and I have met quite a few ladies in the last year who were really young I just turned 56 yesterday so I was blown away with some of the women that I have run across that were in their 20s and 30s and all of the things they have another myriad of issues that they go through you all go through versus what we go through, but being able to advocate for yourself is not something we typically learn to do until you're older, like you're older and wiser and you're just like yeah, I can speak up and I will tell you exactly what I want with my body.

Speaker 1: 8:44

I will tell you what you are going to do for me, and sometimes we have to learn to get that voice. So thank you for being there on behalf of all of the other women that this may be happening to. So then, walk us through your treatments. Walk us through what came after that.

Speaker 2: 9:04

So after my doctor and I kind of calmed me down a little bit, we had to decide where I was going to get treated. This again is in the middle of the global pandemic no-transcript. How am I going to be treated during a pandemic with low blood count, white blood counts? My doctor was in Manhattan. I really don't want to be schlepping back and forth from Long Island into Manhattan on a train or in a car in global pandemic. That just didn't seem safe to me. So I had to go and interview all of these different medical teams. So I did end up interviewing a team in the city and then I found my treatment center, which was actually around the block for me. I didn't know that they had a satellite treatment center by me.

Speaker 2: 9:48

So I actually ended up falling in love with my oncologist and set up a plan of action and we brought to me you know we're going to go through neo-adjuvant chemotherapy, you're going to do four rounds of AC, four rounds of taxil, and my biggest thing was I wanted these off years ago. Can you please cut them off? And every doctor is different. Everybody is different. I agreed to go with the neo-adjuvant chemotherapy because of the fact that I wanted to know if I got a complete pathological response. I wanted to be able to say the chemo didn't work, these cut them off now. And now what else do I need to do? And I never wanted that. What if? Component? And that's just me. And that's a huge difference from when I was trying to advocate for getting my mastectomy as soon as possible to get them off. I kind of took a backseat on it and I was like, no, you know what I want to do treatment first, let's wait, see how things go, and then do the surgery after. So that was a great thing that me and my doctor both worked on. We explained to me both options doing surgery first, then chemotherapy, or chemotherapy first and then surgery. And I chose. I got to choose the path that I wanted. And that goes back to my point in saying these doctors work with you. They shouldn't be dictating how you're doing your treatment. You should be the end, all be all and making the decisions on what you do. That's best for you, because only you have to live the rest of your life in your body. These doctors, once you get to that six months or post treatment, they just see you for these checkups. They're not going to have to live the day to day. Only you are, so I'm a really big advocate of that.

Speaker 2: 11:23

Before, though, I had it started treatment because I was quote unquote so young and I don't have any kids. I had to go through fertility preservation, so I kind of delayed my treatment a little bit. I went and found a really renowned fertility specialist here in New York. I went through a really quick egg retrieval, embryo freezing, and then I was due to start chemotherapy, like the day after my egg retrieval, and again I took a backseat and I was like you just pumped me through all of these estrogen, progesterone, like all of these hormones, and now you're going to completely cut them off and put me a menopause. You need to give me a little bit so I can kind of like process everything that's going on, and he had urged me you know, don't wait too long. You know it is aggressive, we don't want to wait too long. I said I'm just asking for a couple of days. I just want to go through the retrieval, spend a weekend with my husband, my dogs away, calm myself and really prepare myself for this fight, and he agreed. So that's what we did, and I was so thankful for that and I went into my four rounds of AC. I did dose dense and then I found I went into taxel. Four rounds dose dense and by the third one my liver started to not like the taxel. So we had to push my last one a little bit and I finished in January of 2021.

Speaker 2: 12:47

I finally got my double mastectomy, which I was so happy for. But during my mastectomy they do the Sentinel no biopsy and then they send the no biopsy out for full pathology. So the no biopsy I guess like the rapid, if you want to kind of compare or whatever came back fine, I was totally fine. So they put my expanders in, so it made up through me to the recovery room, woke up and felt amazing and a week later is when my doctor called me and she's like the full pathology came back to show that you've got micro mats in one of your lymph nodes, so time to go back to the OR and I was like no, yeah, wow, that's like a another complete blow to your world, right?

Speaker 1: 13:32

Oh, gosh, gosh. What were some of the complications you had? So you found out that it had gone to one of your nodes. What did they do after that? What kind of complications, if any, did you have? Even with your mastectomy, you did get reconstructed. What kind of complications did you have?

Speaker 2: 13:50

I had a couple of complications. So throughout treatment we uncovered that I have a Chiari malformation. So I have a Chiari malformation want, which is basically my brain is too big for my skull. So what happens with the Chiari malformation is the base of my skull is very small, so when my brain swells, like from dehydration, being too hungover, those kinds of things, I get severe migraines because my brain stem is trying to push into my spinal cord. As many of the people who are listening may know, chemotherapy severely dehydrates you and that was the one thing that I kept constantly battling. You know, even before chemotherapy I have an absorption issue and I could never figure out kind of my balance and so it kind of really unbalanced myself when I went through chemotherapy. But luckily my team was all over it. We fixed my symptoms and monitored the Chiari malformation, so I've been stable with that, which is great. So that was one issue that wasn't really anything that I could do about. It was an underlying issue.

Speaker 2: 14:56

The second issue was during my mastectomy, when I was healing, I developed courting and many people don't know what courting is. It's not something that your surgeons tend to talk about all that much and I think that they need to start talking about that, Because everyone, when they get a mastectomy or even a lumpectomy, when they go through surgery, they're cutting through the nerves and there's always that chance that your muscles can seize out and the limited motion of our arms is generally warranted because we're not able to move our arms. But that significance of the courting is something that many people are not aware of and they just kind of assume that this is part of the, you know, recoup process and it's not supposed to be so. That was one bout that I had an issue with and that happened in between my finding out I needed to go for another surgery. So I'm like cool.

Speaker 2: 15:51

So now I'm dealing with courting. I got to go in for another surgery. I just broke my cords. What's going to happen with this Second surgery? They got to go into that same spot. Am I going to get courting again? So that was something that was on my mind. But the more important thing that was on my mind was the lymphedema, and if you go on Google and you Google lymphedema, you're going to see trunk limbs. You're going to see the worst of the absolute worst, and that's why we always don't go on Dr Google.

Speaker 2: 16:18

Please don't go on Dr Google. Good advice Immediately. You know, I'm an athlete, I've worked out all my life, pretty much all my adult life and seeing Dr Google and those images huge PTSD I was like, oh my God, this is what's going to happen to me if I take my lymph nodes out. No, I'm not taking my lymph nodes out, absolutely not. So I had approached my surgeons and I had said look, I'll do the surgery, but I want to talk to a lymphedema therapist before I go into the knife again. And I had to fight them to do that. So normally with lymphedema therapists because there's few and far between for lymphedema therapists they don't see patients prior to developing lymphedema. That doesn't sit okay with me.

Speaker 2: 17:06

I was already told no to my preventative mastectomy and I was being told no again to try and prevent lymphedema. And at that point I had learned from my mistakes and I said I'm not having the surgery until I talk to a lymphedema therapist. Balls in your court. This is my decision. So if you want me to have the surgery, if you think it's in my best interest, put me in touch with a therapist.

Speaker 2: 17:28

So I finally did and I'm so happy I did because they took my baseline measurements for my arm so I could compare the two arms, I could compare my pre surgery to my post surgery if any swelling were to occur. They showed me massage techniques. They showed me signs and symptoms to look out for and really made me understand that the Google was an extreme, like an unrealistic approach for me in my situation. So that really helped me to kind of then go okay, now I'm ready for part two, like I'm ready to get back into battle. So that's when I went in for the surgery and then I had to continue on to more active treatment.

Speaker 1: 18:06

So let me ask you something. You had the wherewithal to ask about a lymphedema therapist. So when I went to New Orleans to get my breast surgery, there is a lymphedema therapist there. I had no idea what lymphedema was. All of the information that was coming at me was, all in hindsight, really good information, and she was amazing and she even came to me after my surgery, did the massage and all that. But I really didn't understand any of it because I just never heard of it. And so you had the wherewithal to understand. How did you get to that point? Who told you? Like you didn't just all of a sudden think, oh well, something about your lymph nodes, you had somebody who must have been a good mentor to you or somebody who mentioned it to you for you to understand. That is that, yes, fair assessment.

Speaker 2: 18:57

There's a whole myriad of people and things. Really. You know my best friend at the time and still is, I should say at the time but my best friend is in the medical field. She's an MP, she deals with pediatrics, but A lot of the things that we talk about is medical. When it came to my treatment, you know she lived in California. I lived in New York while I was going through treatment. You know she Couldn't be here for me in one of the toughest times of my life, especially because we're in a pandemic. So we were constantly bouncing each other off. You know what are you working out today? Oh, I'm doing this and doing that. She was my workout buddy.

Speaker 2: 19:32

Hey, I was on Google. I found these images of like I googled breast cancer and lymphedema showed up and all this. And so we bounced off of things. There are pamphlets the doctors were giving me when I got my surgery, like a side effect could be lymphedema. So of course, I'm like what's the name? Google, google, google. I'm. I didn't want to read the pamphlets because we've got a lot of information that's just like thrown at us and then the last thing I want to do is read like a packet that's like six inches thick and I'm like I don't understand a word that's going on in here. But you know, I'm looking through things, my husband's looking through things.

Speaker 2: 20:02

I had a lot of people's eyes and ears and being in support groups to. You know the one good thing about I keep mentioning the pandemic, but in hindsight I don't think I would have been as knowledgeable if it weren't for the pandemic, because I would have been distracted with work. I would have been doing everything in anything to keep my mind off of treatment, whereas during the pandemic I'm forced to stay in my house. I'm forced to really deal with these emotions and have nothing but time on my hand. So I joined Facebook groups, I joined Instagram groups and the community really helped Me learn from what other people were dealing with and that's. You know. The great thing about this community is we're a club that no one wants to join, but we're the best people because we help each other and we want each other to learn from what we've learned and passed that On to that one day we don't need to learn anything because we all are on the same page.

Speaker 1: 20:56

Yes, I call it the sisterhood of all sisterhoods.

Speaker 2: 20:59

Yep priority that you never wanted to join.

Speaker 1: 21:02

I have been met with such amazing women who are so open to sharing and helping and trying to make sure that they are, you know, shortening the learning curve for other patients, and that's exactly what this podcast was all about. It kind of was a sort of a healing mechanism that I started because I was like I had nothing. I had just retired from my job and then one week later found out I had breast cancer. So everything was cut off that I was doing before and I had all these other plans that got completely put on hold. And at some point after my surgery I was like what the fuck am I going to do with my life? I don't even have any significance, I don't have any kind of anything. And that's when I was like you know what? I'm going to start a podcast, I'm going to interview as many people as I possibly can to help the next person who gets that breast cancer, because it is freaking, overwhelming. And you talk about packets.

Speaker 1: 22:00

So my situation was I got the breast cancer, I was given a surgeon and an oncologist. You know I didn't have the wherewithal or the understanding about oh, do I have chest cancer? Do I have choices? You know things like that. Now I am an advocate for myself. I listened to my body and I've learned how to be a better advocate for myself during this situation, and good for you for saying no, I'm not going to do this until you give me what I want. And one of the things that is really important for women to do is to find their voice. Usually, we find our voice when we've had the experience from before of being pushed around and told what we can and cannot do, and so my new thing is that don't tell me that I can't do it. Tell me how I can do it, and so it's so important for women out there to be able to find that voice. So thank you for that.

Speaker 1: 22:53

So your survivorship how has your family and you kind of talked a little bit about your best friend? Your best friend wouldn't? That's so amazing that she was there for you? I'm assuming it's a. She has, like I know. I know people who have best friends that are men and you know whatever, but your best friend was there for you and you got to bounce things off of her and Learn different things. And then, of course, you have your support system with your husband, who also has experience with cancer. So he gets it. He gets the. Oh my God, I got something in my body that's killing me, trying to kill me. So how has the rest of your family been involved in your journey through your survivorship?

Speaker 2: 23:32

Oh they're, they are very involved. My sister in particular you know her and my best friend to actually put them in a Facebook group chat and it's called all boobs matter. It's like my little thing with them because I'm like we'll have different boobs, boobs, whatever, but like we're all hyper aware of the three of us, of our bodies, and we advocate for ourselves. And you know, my sister is my little sister. So of course, once I got diagnosed and like can you please make sure that you are checking yourself, like we, I don't carry any genetic mutations. I don't know if you do, like our family and I don't really know what's going on with that, but just please, like make sure that we're talking to each other about stuff. So she has actually been a very critical part in my company as well.

Speaker 2: 24:16

The two of them are kind of my editors. They're both having a medical background. My sister is in more of like neurobiology. She does like samples and things like that. She's very analytical brain and then you have my best friend. So those are the two people who understand me in and out, have medical backgrounds, support me, want to help and really believe in foods and fitness. So they've been instrumental in my survivorship and my diagnosis and everything. My mother is even more so. So she is a lymphoma survivor. She became a two time lymphoma survivor around the same time I got diagnosed with breast cancer. So that was a hit in a half, because my mom was the only first diagnosed when I was like 16, I was in high school. So to hear it come back after all this time and then I'm battling breast cancer at the same time is like Fuck, somebody's setting you up with that.

Speaker 1: 25:15

Are you having Cation? What?

Speaker 2: 25:16

are you doing? But you know I'm all about minds and yes, it is the absolute shittiest feeling in the world. But at the same time she lived in Arizona, I lived in New York and we were each other support system. You know she started treatment after I did. She was on more of a wait and watch.

Speaker 2: 25:38

So when she did finally start treatment, you know she was bitching and moaning and I was like mom, listen to me, who better to battle cancer than your daughter? And she's like I could think of a thousand other people. And like mom, no, listen to me, listen to the words that are coming out of my mouth. Who better than to go through this journey with you, then your own daughter, your own flesh and blood, to come out the other side and say I can't cancer's ass with Because I can't think of anyone better? Maybe your other children, like your daughter, is going through this with you. So we have each other to push each other and be there and cry and really you and I share the same blood. We share the same everything. So we get to say that we survived cancer together and not any relationship can trump that. So that kind of helped her change her mindset too, and now she's actually one of my clients. Oh, very nice. How old is your mom? My mom is 63, 64.

Speaker 1: 26:39

You know, sometimes our young daughters are very wise and we get a lot of information from them. So thank you for talking to your mom about that, because that was probably the best thing for her. And sometimes, you know, even as adults, we need someone, even who is younger, to give us that jolt of positivity and just a different way of looking at it. Yeah, so that's awesome. And now she's one of your clients.

Speaker 2: 27:06

I love it.

Speaker 1: 27:07

What other kind of outside support did you find to be super helpful that maybe we can share with newly diagnosed people who are coming into the sisterhood?

Speaker 2: 27:19

The communities are going to be your best friends. Sometimes they're a little intimidating. I'm not going to lie. I was probably a fly on the wall for a bunch of them in the beginning. But for me my triple negative breast cancer you know, I had my TMBC thrivers. That was my group that understood me. We didn't know anyone through a hole in the wall. We're talking to people virtually, but they were my go-to as much as you know. My husband, who had cancer, understood what I was going through. He didn't really understand as much as my mom was going through treatment with me. She didn't really understand. Cancer is not just cancer, it's a specific type of cancer. So understanding that there was another 33-year-old woman out there who was also an athlete that was struggling with the same things that I was struggling with was comforting, and those groups really helped me in a lot of my darkest times that none of my friends or family could have helped me with.

Speaker 1: 28:19

Yeah, I couldn't agree more. I definitely found the communities that were most helpful to me. I was told at the beginning, like you can get into some of these Facebook private groups and things like that and you might find that some of them aren't as helpful as others. One of my friends told me that she got into a couple and decided to get right back out of there and kind of look into other things because it was so, so doom and gloom that it was just bringing her down big time. And there's a difference between being doom and gloom and asking for advice on how to deal with things that are going wrong and maybe even just saying I'm just having a real hard day today. How do you all get through this? And I did find that I did jump into a couple of support groups and jump right back out.

Speaker 1: 29:08

I will tell you that the community that I have found most helpful is just being on Instagram and reaching out and chit-chatting with folks like you. It's just been amazing. And then I was introduced to a couple one support group in particular here, and it's all about survivorship Anyone who has been touched by cancer and survivorship and you making those connections with people who might have something in common with you personally, and then, of course, the kind of surgery I had. There is a private Facebook group for the New Orleans crew. That's been very, very helpful to me as well. So, yeah, thanks for that. Can you talk a little bit more about your business, your foobs and fitness? Foobs and fitness.

Speaker 2: 29:50

Well, my baby, as I call her. She was born at the time of when I was told I needed that next surgery, because I was so tired of just being told that I can't do something, and I knew other people out there were dealing with the same thing. I just happened to be a bitch about it. I want what I want and I have a voice, and I particularly don't really care what other people think about me. So I wanted to teach people that they can find their voice. It may not be in the same tone as me, it may not be in the same way as me, but, like you were saying, you have a voice, you will find it. You may not find it in the same way that I found it, but you'll find it. So I started foobs and fitness as my goal to myself because I had already had the anticipation of wanting to go back to school, because I had worked out all through ACT and besides the Kiari, I never got sick, I never threw up, I never had those quintessential chemo side effects. I was tired, but I never lifted as heavy as I did during treatment than prior to. So the fact that I did that was mind blowing and I was like there's something there. And the fact that my oncologist told me that there were so many studies about how exercise reduces risk reoccurrence, reduces treatment side effects. I'm like this should be on a billboard. Why is this not like they're telling me that I have a chance to not experience those side effects by moving my body? Okay, give me, give me all of it.

Speaker 2: 31:23

So I had promised myself that after I healed from my mastectomy I would go back to school and I did not expect to have to go through more treatment. So I kept that promise to myself. I created foods and fitness to do social media while I went back to school. So I was going through 25 rounds of radiation, six months of oral chemo, studying to be a personal trainer, graduated from being a personal trainer, went back to school again to study oncology and exercise with the Cancer Exercise Training Institute, became a certified exercise specialist, then went back again to school to become a women's fitness specialist. So, all through treatment, I was still studying, doing all of these things and using myself as a guinea pig, because what I'm learning through all of these modalities I'm able to apply while I'm still in treatment.

Speaker 2: 32:10

So what can I do during radiation? What can I do with this oral chemo? I obviously couldn't do it through IV chemo, but I had already known what I had done previously. So what better way than to teach, than to use myself? And then I was using everything on social media to be like. This is what worked for me. I want you guys to understand this is where we're coming to.

Speaker 2: 32:31

And finally, when I graduated in November of 2022, 2021, 2021, from my oral chemo, I was done with treatment. I was discolored no evidence of disease, and that's when I officially formed my LCA and I started taking clients. When I got cleared from my exchange surgery, I was like, all right, I can start lifting weights, cool, who wants to join me? And I got my first client and it's been an uphill battle with everyone and seeing them go from surgery to treatment and this and that, and seeing my client who's been with me the longest that that first client that I've had is still with me to this day and I have seen her go through surgery, radiation, deep flat, all different forms of treatment, and now I see her being able to lift her arm above her head. Again. She's using weights, she's walking around with no problem. She's a little tired because she's on hormone stuff, but seeing how she started with me to where she is now is just absolutely priceless.

Speaker 1: 33:36

Yeah, you essentially reinvented yourself because of cancer. To remind my audience, you had lost your job during the pandemic and then you got this breast cancer. So your whole journey just sort of brought you to where you are today and a very powerful force in helping other patients. And if they're still with you today, that's a testimony to who you are and boy we're lucky to have you. What is one big piece of advice that you would give and I almost feel like I know what you're gonna say, but I don't think I'm gonna say. Maybe there's more. What is one big piece of advice you would give to someone who has just been diagnosed with breast cancer? What would you say to them?

Speaker 2: 34:23

You are the CEO of your body. End of story. What I'm all about advocacy. You know what is best for you. You run your own company. That company is your body, so listen to what your body is telling you. You need to understand that your body speaks a language and not all of us understand how to interpret that language. The way you speak to it matters. Your body is your company, so run it the way that you would want it to be ran.

Speaker 1: 34:51

I like it. I knew it was gonna have something to do with advocacy. You just said it so eloquently. I love it. I like that. You are the CEO of your body. You were talking about deciding on what route you're gonna go with your body, and that is one reoccurring theme I've been hearing quite a bit is this whole idea of shared decision making, and shared decision making is not a new concept. When I was talking to Dr Manos Crisopelo, I don't know, about a month and a half ago, he was talking about how this is not new. This is a term that is from the 80s, you know, and it's just that all of the people during the 80s and before are so used to this patriarchal type medical system and where the doctor says oh yeah, this is wrong with you.

Speaker 1: 35:38

We're gonna do this, this and this, and you're like, yes, doctor, okay, and that's just not how it is anymore. And I mean there are a lot of physicians out there who still do have that mentality. We just have to retrain them and we do have to take control over the decisions that are gonna be made for our bodies. And so when a doctor is able to say, hey, rory, these are the two things that can be options for you, and we don't really have that ability to do this one here, but here's where you can do that, and here are the pros and the cons, and here are the blah, blah, blah, when you have that kind of conversation with your patients, then the patient in turn becomes more compliant and I mean that in a positive way, that they are making the decision and they feel more at ease and less anxious about going into what they're gonna be doing. And I just feel that we, as patients, need to be able to use our voice to make sure that doctors are doing that. Like, how can tell me how I can do this, even though this is not an option in my own town. How can I do it? Where can I go? And you need to support me. I mean that you are the CEO of your own body, right? I want to say something.

Speaker 1: 36:58

You have a wonderful painting in your background. You have a. It's like this Phoenix, you know right, and it's got fire. So that was my theme throughout my whole cancer journey is Phoenix catching fire? Right when I was diagnosed, my husband and I were at this chalk art a little festival thing. I saw this beautiful artwork on all made in chalk, and it was Phoenix catching fire and that was really what my spirit whatever you would call it animal that was fighting the cancer inside my body, and I've just always held on to that and I actually got a tattoo commissioned. Now let me ask you about this, Rory Okay, did you have lymph nodes removed over there? Nope, okay, so, so I had three that were removed from my left arm and then one on the other one, and I'm told I can't get a tattoo at all.

Speaker 2: 37:54

Nope, Any of those aren't read, especially not read.

Speaker 1: 38:00

Well, I didn't even hear that part. My lymphidema therapist told me that if I'm going to do it, do it on the right arm, because it's only one lymph node and not the left one. But that's not true, right, you shouldn't do it at all.

Speaker 2: 38:16

Also for all the viewers. I always err on the side of caution when it comes to lymphidema because it is a lifelong diagnosis and it is a flare up. It will come and go, as long as you catch it at early stages. To me it was not worth it to do it on the side that I had the lymph nodes taken on and I Try and tell people it's, it's your body, you know, yeah, you could do whatever you want. As long as you understand the risks Versus the rewards, you make the decision that's best for you.

Speaker 2: 38:52

I know plenty of people who have had one lymph node taken out. They went to God tattoo and they were fine, totally fine for me, because it was a sleeve that I was doing. I was like that's a lot, I'm not gonna do it on that side, I'll do it on the side. So it also depends on the size you're looking to do like a little Phoenix on, like a small one, maybe it won't be as bad. But you don't know what's gonna trigger the lymphedema. Anything can trigger lymphedema, literally anything. So it's up to you.

Speaker 1: 39:20

Yeah, I could do it somewhere else on my body. I just can't do it in that quadrant, that area of my body. You could do it like on the back. I wanted to do it over here because the you know, on the left side, because this cancer Was in the left breast and it has really cute little breasts on it too. That the person put on there was really cool. I'll figure it out, but I love your sleeve. Yeah, I love the artwork in the background and mine. It just reminds me of my I'll have to send you.

Speaker 2: 39:46

Yeah, I want to see the artwork.

Speaker 1: 39:48

It's really cool. Okay, so you have some resources that you want to share with us that I will have in the show notes as well. I do have how to Email you. I will also put your Instagram handle on there as well. Cool, so people can follow you. And then, what other resources do you have in this Google document?

Speaker 2: 40:08

So the big one that we've touched on and this is a good segment with the tattoos is a lymphedema drainage exercise program. So this is something that the cancer exercise training Institute has bestowed upon Students. I've incorporated this into my own daily routine and it is something that I have my clients do Every day, especially before being active. I have been really good with my lymphedema. It's made me more body aware. I haven't had those trunk symptoms, which I'm very thankful for.

Speaker 2: 40:41

And even if you don't have cancer you know I have plenty of people who I give this lymphedema drainage exercise routine too, because the lymphatic system, to begin with, is just a very understudied portion of our bodies and that's sad because, yeah, it's a pretty important one. If you ask me, think of your lymphatic system as like the coffee filters of your body. It's their job to pick up the gunk and to notify your body of something going wrong. So you want to keep the lymphatic system running. You know it's like a well-oiled machine. So this exercise program helps do that. It teaches you deep breathing, there's some stretching exercises there, there's some strengthening little isometric presses, and it's a really great way that I've found to try and get people who have just had their surgeries moving again. They're all very gentle movements. You can do these throughout treatment too, even if you haven't had surgery. It's just a really good routine, and I do them every morning.

Speaker 1: 41:36

Okay, well, I'm gonna do them. I actually do massage my arm like I do take the advice of two different lymphedema Therapists that I have spoken to. I actually even interviewed one of them in our area at an earlier episode early on in the production of the podcast, and she's very, very knowledgeable, very sweet, and I know that it's really hard for her to tell people you can't get a tattoo, you can't sit in the hot tub too, you know, you know, and I just got in a hot tub so I'm real careful about where sitting in there and how often and how where I sit into it up to you know, and stuff like that and that's what they like.

Speaker 2: 42:17

In the future, things won't change because I know everybody listening to this like lymphedema is scary, af, it's scary. You know we've already been through this thing and the biggest thing that you need to know with lymphedema is that you can conquer Anything as long as you take your time. Your body tends to flare up with this reaction because it's something new. So, like Conditioning your body to certain circumstances slowly over time is what helps keep lymphedema at bay.

Speaker 1: 42:47

Okay very good advice. Well, this has been an incredibly enlightening conversation. You know, when we talked before, I'd learned so much more about you and now I feel like I know you even better and I thoroughly enjoy following your page. And I know you're helping our friend Luanne with the whole Brava art day and by the time this airs, bra day, which is breast reconstruction Awareness, which is tomorrow Yep, right, it's the 18th of October, but I know you're helping with that and you're just really out there in the community Helping. I see you everywhere. It's like I got to have this girl on my show man. Yeah, no kidding, because our minds are always going. It's like, oh my god, how can I help the next person? How can I? You know, I know I feel like you and I probably are a lot of like in that very and I always and I also told you at the beginning was like I love your haircut right before I lost my hair.

Speaker 1: 43:45

I actually cut my hair much like that because I thought it was so bad-ass and cool looking, and then I had it for like a week and then it fell out Well, it started falling out and then my husband shaved it and everything and I've seen such really cute pictures of you All through your treatment and you've also got a really cute head and everything, and so you're clearly a beautiful person and I just thoroughly appreciate your being on my show and I just hope that to my audience. You know, go check out Rory's Instagram page and you can reach out to her via email. She's got some wonderful resources. So if you are someone who has just been diagnosed or you know somebody who's just been diagnosed, please send him Rory's way. You know, have them listen to my podcast, have them look at all of Rory's stuff and Because that community is incredibly helpful. Again, you know, I just appreciate your being on here and is there anything else you'd like to add before we wrap up here?

Speaker 2: 44:42

No, I'm absolutely honored and I feel like we're breasties. But we've never met and I feel like I have my Breasty little click and I love them, so, so, so much.

Speaker 1: 44:53

Me too. I'm totally with you, sister. So thank you again, and to my audience, thank you for joining us and we will see you on the next episode of test those breasts. By for now, friends, thank you so much for listening to this episode of test those breasts. I hope you got some great much needed information that will help you with your journey. As always, I am open for guests to add value to my show, and I'm also open to being a guest on other podcasts where I can add value, so please reach out if you'd like to collaborate. My contact information is in the show notes. I rely on people like you to listen, raid, review and share this podcast with your loved ones, so please enjoy my trailer and any other episodes. I'd love to hear your thoughts. I'm on Apple, spotify and other platforms. I look forward to sharing my next episode of test those breasts.