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Test Those Breasts ™️
This podcast by Jamie Vaughn is a deep-dive discussion on a myriad of breast cancer topics, such as early detection, the initial shock of diagnosis, testing/scans, treatment, loss of hair, caregiving, surgery, emotional support, and advocacy.
These episodes will include breast cancer survivors, thrivers, caregivers, surgeons, oncologists, therapists, and other specialists who can speak to many different topics.
Disclaimer: I am not a doctor and not all information in this podcast comes from qualified health care providers, therefore does 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.
Test Those Breasts ™️
Episode 66: Transforming Adversity into Advocacy: Michelle & Kendall Sandlin's Courageous Cancer Journey
Ever wondered how a high-stress lifestyle could transform into a health-conscious journey after a life-changing diagnosis? Meet Michelle and Kendall Sandlin, the inspiring mother-daughter duo who share their powerful story on this episode of Test Those Breasts. Michelle, a breast cancer survivor & award-winning writer, opens up about her shift from the chaotic world of freelance writing to prioritizing her health after her diagnosis and the loss of her mother. Her daughter Kendall takes us through her courageous, proactive approach to managing her health by undergoing a double mastectomy and full hysterectomy upon discovering she carried the BRCA1 gene mutation.
The brutal realities of chemotherapy are laid bare as we navigate through its demanding cycles and debilitating side effects. We discuss strategies to manage the fatigue and nausea, and the importance of rebranding those grueling "red devil" treatments into "red warriors" to change patients' mindsets. Get practical tips for preparing for treatment, and understand that while chemotherapy itself might be temporary, its aftereffects are long-lasting. This conversation is designed to support and guide new patients through the overwhelming preparatory stages of their treatment journey.
Transitioning to MD Anderson for cancer care comes with its own set of emotional and logistical challenges, which Kendall courageously recounts, emphasizing the importance of self-advocacy. We delve into her experience of navigating insurance hurdles to receive preventative care and surgery, and the supportive role MD Anderson played. Hear about the vital role of being a "previvor" and the shared experiences that forge strong connections among those in similar situations. Michelle and Kendall's heartfelt advice underscores the significance of maintaining a positive outlook, being vigilant about health matters, and making impactful lifestyle choices. Their journey is a beacon of hope and practical wisdom for anyone facing a cancer diagnosis. Michelle's bestselling book "Cancer Don't Care" on Amazon is one you won't want to pass up!
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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 .
Hello friends, welcome back to the Test those Breasts podcast. I am your host, jamie Vaughn. I'm a retired teacher of 20 years and a breast cancer thriver turned staunch, unapologetic, loud supporter and advocate for others, bringing education and awareness through a myriad of medical experts, therapists, caregivers and other survivors. A breast cancer diagnosis is incredibly overwhelming, with the mounds of information out there, and other survivors A breast cancer diagnosis is incredibly overwhelming, with the mounds of information out there, especially on Dr Google. I get it. I'm not a doctor and I know how important it is to uncover accurate information, which is my ongoing mission through my nonprofit. The podcast includes personal stories and opinions from breast cancer survivors and professional physicians, providing the most up-to-date information. At the time of recording Evidence, research and practices are always changing, so please check the date of the recording and always refer to your medical professionals for the most up-to-date information. I hope you find this podcast a source of inspiration and support from my guests. Their contact information is in the show notes, so please feel free to reach out to them. We have an enormous breast cancer community ready to support you in so many ways. Now let's listen to the next episode of Test those Breasts. Hey friends, welcome back to this episode of Test those Breasts. I am your host, jamie Vaughn, and today I am so excited to have a mother-daughter duo I guess, if you will, michelle and Kendall Sandlin on the show. So Michelle is a breast cancer survivor and an award-winning writer, widely known for her generalistic accomplishments as well as for her compelling storytelling, poetry and creative musings.
Speaker 1:She spent over 10 years as a freelance writer and columnist. During that time, she penned a weekly column for the Houston Chronicle, which was published from 2013 through 2020. Her work was also featured in the Houston Business Journal, mobility Magazine and various other publications. Originally from Shreveport, louisiana, michelle studied communications at LSU and later earned her BA in journalism from the University of Houston. She currently lives in Houston with her husband Kenny and their beloved English Bulldogs Max and Stella, and then Kendall. Her daughter is a stay-at-home mom of three boys Jacob, robbie and Nico.
Speaker 1:Following her mom's breast cancer diagnosis and her subsequent discovery that she had the BRCA1 gene mutation, kendall opted for genetic testing of her own. That testing revealed that Kendall also had the BRCA1 gene mutation. This meant that her chances of developing breast cancer and other types of cancer, like ovarian cancer, were significantly higher than the average woman. As a way of mitigating her risk, kendall followed the advice and suggested protocol of her medical team and had a double mastectomy, followed a few months later by a full hysterectomy. Well, michelle and Kendall, how are you doing today? We've had some technical difficulties. That's a lot, but I'm glad that we're connected and we can hear each other. It's just. I've been really excited about this interview because I find that it is so full of really good information for us to get out there to the audience, and obviously you two are also advocates, and all of that for the breast cancer community or really anyone with boobs, right.
Speaker 1:So, and especially if they have that gene right. So welcome. How are you doing, michelle? Well?
Speaker 2:I'm doing great. I feel very blessed and happy and grateful. I have been cancer-free for almost three years, but it was not without a bumpy ride and lingering effects and all that good stuff. So, yeah, thanks for asking, but A-OK, right now.
Speaker 1:Good, I feel like you and I have popped out on the other end just kind of enhanced people. I guess you know a lot more knowledge and I'm feeling better. I'm, let's see. I'm about a year and a half out from being cancer free and tomorrow is my two year anniversary of my diagnosis, june 11.
Speaker 2:So I was like yeah, wow.
Speaker 1:It's really interesting that it was two years ago tomorrow that I found out, and we know what that does to our psyche when we get diagnosed with breast cancer and Kendall thank you so much for being here. I'm so glad that your mom told me about you, so I'm like we need to have Kendall on the show too, because you really took control over your own life because of that gene mutation. So how are you doing today?
Speaker 3:I'm good, I feel great. I'm recovered fully from both of my surgeries and now I have a very significant, significantly less of a risk to develop cancers in my breast and ovarian, all of that stuff. So that's great.
Speaker 1:That's fantastic. We're going to talk a little bit more about that in just a little bit, but I do want to know first of all, michelle, as you know, when we get a breast cancer diagnosis, we go through a lot of changes, and so we're different people, essentially, since before breast cancer. So who was Michelle Sandlin before breast cancer? What was going on with your life?
Speaker 2:Well, I mean, I think fundamentally I was the same person I am now, but professionally speaking, like you said, I was a freelance writer and so I had clients that I had to answer to and deadlines and things of that nature that kept everything pretty high octane all the time, and I think that my anxiety was always, you know, at a level 10 and my stress was at a level 10. And really what changed for me actually preceded my diagnosis, and that was two years before that. I had very unexpectedly lost my mother, not to breast cancer, but just middle of the night phone call and gone With that. It stops you dead in your tracks for everything that's going on in your life, and I made the decision, as part of my grief and the journey I was going through as a result of that loss, to almost be on a quest to get as healthy as I possibly could, whatever that looked like, and so I gave up alcohol. That was the first thing to go.
Speaker 2:I wasn't someone who smoked, I wasn't someone who did recreational drugs. I was, I would say, a few pounds overweight. So I got a Peloton bike, and it's interesting because the Peloton bike came through the door on the exact same date that my breast cancer diagnosis came through the door, only two years apart, which is just crazy when you think about how dates coincide like that. Just crazy when you think about how dates coincide like that. And so during that period in my life, we were then hit with the pandemic and there was all this isolation, and so I was working out, honestly, like a maniac. It started out three, four days a week, and before long it was six days a week. For an hour or two a day. I had two days. I would work out in the morning, work out in the afternoon, and in my mind and in my reflection in the mirror I thought I'm the healthiest I've ever been. And then boom, I found a lump in my right breast.
Speaker 1:Yeah, because cancer don't care right. It doesn't matter how healthy are we.
Speaker 2:Yeah, I mean, that's what I found out and my risk factors, as far as I knew, were very low. I mean, I know the statistics one in eight women. But I thought, yeah, yeah, yeah, but I'm not one, I'm not the one we didn't have cancer in our family close to me. My mother didn't have cancer, my grandmothers didn't have cancer. We had some distant cousins that had cancer and so, as far as I was concerned, I probably was going to get heart disease or Alzheimer's or something else. It was never, ever on my radar. Yeah, so before getting cancer, I always say I was in the best shape of my life. I was the most fit I'd ever been and feeling, maybe not wonderfully emotionally because I was still going through grief, but physically speaking I was feeling good.
Speaker 1:You and I have a lot of parallels and I know we talked about this. My mom died in October of 2019, october 6th to be exact, and October just happens to be my favorite month ever for a myriad of reasons. One, because it's my birthday month and also our fall here is just absolutely gorgeous and it was my mom's favorite month. And then she goes and dies in October, and then I got breast cancer.
Speaker 2:But I refuse to throw October out the window, having our mom's diet.
Speaker 1:I mean that really threw me for a loop as well, and she had heart disease, she had congestive heart failure actually. So when you say something like, yeah, I'm not going to be one of the ones right, so I always knew in my mind because I've always taken care of my breast health and I'm 56, I think you just had a birthday, right Recently- Right, I'm 60.
Speaker 1:60, just turned 60. So you and I were almost the same age, right, but cancer was always something that happened to someone else, right For sure. And it's interesting that we think that a little bit. But at the same time, like I always took care of myself, I was also in the best shape of my life when I was diagnosed. So people were pretty shocked, I'm sure, with you saying, oh my God, michelle, but you're so healthy. And it's very confusing to hear people say that, because it's almost like you feel shame, like what did I do to myself?
Speaker 2:That's how I felt, anyway, and I'm like but I'm in the best shape, it's interesting People didn't say that to me, but I was the one who kept repeating that to everybody, to anybody who would listen, from doctors, my husband, my daughter, I mean I was like, why did this happen? I'm, I could not be more healthy. And uh, that's the shock of it all, because you find out you're the most ill when you thought you were the healthiest, right.
Speaker 1:But there is a silver lining to being healthy, though. So now that we know that cancer don't care and we're going to talk about your book in just a little bit you know it does not discriminate If you have breasts. It does not discriminate, right. So at some point in your life there might be a cancer that happens in your body, but what we do know is that it is a good dang thing that you were healthy, because I feel like it gets you through that treatment so much better than if you were unhealthy. So there's that Right. Kendall, how did you take the news when your mom told you that she had breast cancer?
Speaker 3:I mean horribly. It was super sad for me. As she mentioned, my grandmother had just passed, so I was already feeling sad, trying to just get over that and try to deal with that. And then when my mom told me, I mean it's you don't think like that would ever happen to someone close to you or you know. So I took it very hard.
Speaker 1:And so how did you show up for your mom when she had breast cancer?
Speaker 3:Yeah, I tried to help any way that she would allow me to. I tried to be there and help her and just offer some laughter, bring my kids around. But it was really difficult during COVID just because the guidelines with as far as like, who can be in the hospital with her while she's getting treatment and just the vaccination issues if you are not, determines whether you can be around her. So that was a little hard for me, but I tried my hardest when I could to be there.
Speaker 1:Right Now. You made the decision to take matters in your own hands because when your mom found out she had the gene mutation, you went in and got genetically tested. And what did you decide to do? How did that all unfold for you?
Speaker 3:There was just the option of having the preventative surgery. So that was really the only option. I was considering whether to do that or not. And if I had been left with that just myself, I would have never, ever chosen to do it, at least not at this age. I have like severe medical anxiety. So it was very scary for me to think about all that. But my mom really just was the reason I did all of it. If she hadn't pushed me in the best way then, you know, I wouldn't have done my surgeries.
Speaker 1:Right, how old were you when you had that done?
Speaker 3:This was just this past October, so I was 32, when I had my double mastectomy and reconstruction. And then my full hysterectomy was just this past February and my birthday's in December, so I was 33.
Speaker 1:Okay, all right. Michelle, your treatments when you got breast cancer. What were your treatments like? Well, so.
Speaker 2:I had a very aggressive form of breast cancer. I was triple negative, which, by the way, when you don't know anything about cancer and you hear the words negative, you're like, ah, that's a good thing, I'm negative. They're like, no, not exactly. So I had to like understand the difference between what things were positive in a good way versus what things were positive and negative as just an affirming you know way. And so the tumor was aggressive, it was replicating very quickly, and so the course of action was for me to have 16 rounds of chemo followed by a double mastectomy, reconstruction surgery. I'd had my uterus removed when I was 39. So I still had ovaries and fallopian tubes, and so those came out the following May.
Speaker 2:But I had the first 12 rounds of chemo were every week, and so the chemo cycle was quick. You know, as soon as you felt good again, you were down again. Good again, down again. Lose five pounds, gain five pounds. It just was like a yo-yo.
Speaker 2:And then the last four rounds that I had were really grueling. It's what they call the red devil, which, if you've read my book Cancer, don't Care, we talk about red devil being the red warrior, because that's what one call the red devil, which, if you've read my book Cancer Don't Care, we talk about red devil being the red warrior, because that's what one of the oncology nurses kind of rebranded it for me, which really kind of helped. It's funny how you just change one word and just the connotation and your perception just changes entirely. But those last four rounds, if you consider like a person that's normally at about 100% and they were three weeks apart. So I spent those 12 weeks like about 30%, like laying in bed in agony, like not knowing how I could even get up and go to the bathroom. I've never, ever, felt debilitating fatigue like that. It was as awful as it gets.
Speaker 1:Yeah, I like the way your oncologist changed the name like that. I was pretty scared to get chemo because you have all of this stuff in your mind of what it's going to do and how it's going to make you feel. One of my friends who had had breast cancer several years prior. I told her that I was really scared to start and she said tell me what you're afraid of. And I said I picture this really crazy monster coming into my body and just wreaking havoc all over the place, because she wanted to know what the mindset was, you know, for me. And she said you know, I wish you have already done your first round so that you have an understanding of sort of what to expect and then that way you won't be as fearful, which she was right.
Speaker 1:I got it done and it was terrible, yeah. And then, of course, going from there, I knew what it was like, but every week that you had to go for me it was every three weeks, so I had at least a little reprieve for one week at least of feeling better and then I would go back in, but every week that's pretty harsh. Yeah, it was rough. It was rough. What kind of side effects did you have?
Speaker 2:Yeah, so really it was the fatigue and the nausea, but you know they gave me a lot of medication to try and stay ahead of the nausea. I never threw up, which that was my goal. Please don't let me just throw up. I just want to be able to, you know, not do that, because you know you have all these, like you said, preconceived ideas. You know you've seen cancer in the movies and on TV and maybe you've seen it with someone you knew up close or at a distance and the optics are really not pretty. What you know of someone going through chemo before you kind of experience it yourself.
Speaker 2:And I know that the night before my first round of chemo boy, I didn't sleep at all. I spent almost the entire night right here in my office trying to figure out what I was going to bring with me to chemo. I mean, I was trying out notebooks and pens and deciding on what books I was going to bring, what I was going to pack it in, how many pairs of socks, what kind of jacket. It was insane because I had to do something and just take my mind off of it and finally I just went to sleep and then the next morning we went to chemo and I found out I didn't need half of that crap that I brought with me. I didn't really do anything. I'd even brought all this food, you know, and as soon as I got there they're like can we take your lunch order? Like my lunch order? I brought all this food.
Speaker 2:I didn't know, and I know I'm getting off track a little bit, but I would wish that somebody who is about to go through chemo for the first time should get a phone call the day before the day, two days before, to say hey, we know you've never been through chemo before. Here's some things you might want to think about, bring with you to make yourself comfortable. Here's what you don't need, we have. You don't need to bring 42 blankets with you. We have blankets, you know, or whatever the case may be.
Speaker 2:So there was a lot of anxiety going into that first round of chemo and, similar to you, I kept thinking round of chemo and, similar to you, I kept thinking, once this chemo goes in, that's poison entering my body to kill the poison that's already in my body. And it's hard to wrap your head around all of that. And so I made it a practice from the very first day of my first chemo that before I go to chemo I get out of bed, I get on my Peloton bike and I ride. I mean that's going to be first thing, because in my mind and in my heart and everything that I believe in said, if toxic stuff has got to come into my body, I need to do something really, really healthy before that happens. And so that helped tremendously Right.
Speaker 1:And they do say that it helps with the efficacy of the chemo as well. And I didn't know this. I found out very early on that the chemo is only in your body for a very short period of time, so it's gone, and then the after effects of it is when all of the side effects happen, like a couple of days later. Yeah, yeah, and you would think that they would include all that information in chemo school, right?
Speaker 2:Did they not include those?
Speaker 1:things in chemo school. Nope, it is very, very overwhelming the information that you're given at chemo school anyway.
Speaker 2:So yeah.
Speaker 1:Yeah.
Speaker 2:Right. Well, you know not only that, but you don't know the questions that you should be asking and they're just bombarding you with information from the very first minute. You sit down with your breast surgeon and your oncologist and, for example, I didn't know that there were a bunch of different kinds of breast cancer. I thought breast cancer is breast cancer and same thing with chemo. I didn't know there were all these different cocktails and concoctions. I thought chemo was chemo. And so you don't ask a lot of questions because you're just sort of like taking in all this information. You're like a sponge, but there's never that moment to just kind of breathe and try to accept or whatever. It's just sort of coming at you nonstop from the beginning.
Speaker 1:Yeah, that is one of the reasons I started the podcast is I want to be able to shorten that learning curve for people that have just been diagnosed and even for people who want to learn about it before they ever get breast cancer. Knock on wood, they never do, but chances are. If you have boobs, then I mean at some point in your lifetime. One in eight women get breast cancer right, and same with men. You know it's a lower statistic. And it also, if you know it's a lower statistic, and it also, if you never get it great, you might have a friend or a family member who gets it right or, you know, you might be a caregiver at some point. So just learning about something that's so prevalent in our society right now is really important, absolutely.
Speaker 1:You said something like not knowing that there were different kinds of breast cancer. I didn't know that either and I thought chemo was chemo, and so I remember hearing about people who had breast cancer and then they would go into surgery and then do chemo and radiation and I couldn't figure out why it was that I was going into chemo first and then surgery, and I actually had friends who've never had cancer who'd said things like well, why can't they just go in there and cut that sucker out right now? And I thought what a legitimate question, right Like this, is something that we need to know. So I did ask my surgeon and my oncologist why. And they basically told me that mine was like a five centimeter tumor and they said, basically we want to see what the efficacy is of the chemo. Will it work on you? And if it does, that's good news, because if it ever does come back, we know that this chemo works right.
Speaker 1:But we want to shrink it before we do the surgery and it depends on the kind of breast cancer you have. So it's just some complex, complex stuff. So, okay, surgery.
Speaker 2:Yes. So from the beginning they told me it's either going to be a lumpectomy, a mastectomy or a double mastectomy. And so when I did the genetic testing, which they wanted me to do because of my triple negative breast cancer, it's often associated with BRCA1 gene mutation. So that's why we did the genetic testing, and once they did get the results back and say that you are testing positive for the BRCA1 gene mutation, that's when it becomes a done deal it's going to be a double mastectomy. I knew in my mind from the beginning that's probably where we were going to head, but that was confirmation. And the reason for that is simple I want to completely minimize any chance that I may have for reoccurrence, and so my best option is the double mastectomy. Okay, it makes total sense.
Speaker 2:And they did reconstruction at the same time, which is great because it meant for me I never had to wake up without breasts. And so what they did is a deep flap where they take your abdominal tissue and bring it up top and form new breasts out of that. And what's great about that? A lot of things. You get a tummy tuck, which, as a woman, I don't think any of us turn down a tummy tuck. But what it also does is it takes the nerves as well, which means that your likelihood or your chances for regaining some sensation back is a lot higher than if they didn't take the nerves too, and so, fingers crossed, that's going to pan out, yeah.
Speaker 1:So question how long ago was your surgery first?
Speaker 2:That was February 2022.
Speaker 1:Okay, and do you have sensation back in your breasts?
Speaker 2:I have tingling tingling. That's kind of the extent of it right now, but six months ago or maybe a year ago, I didn't have that. We're moving in the right direction, so I'll take that Okay.
Speaker 1:Well, that's good to know, because I just had my second phase in December, so a little bit less than six months and I have a tiny bit of sensation. So I was just interviewing somebody right before you. I've heard surgeons say be adamant about no, you know, like you're not going to be able to get your sensation back. And then there's some surgeons are like yeah, we can totally do that. Now it works differently on different people. So for some people they may get a lot of sensation back and for some people not. And I had made a comment on a Facebook group about the sensation sparing and I just had said there are some doctors who are adamant that you can't get it back and there's some that say absolutely all that. It's certainly not my opinion. That's what I've talked to surgeons about. And this gal commented back saying that is just absolutely not true. They can get sensation back, right. So it doesn't always work a hundred percent of the time for everyone.
Speaker 1:Anyway, I was just talking about how I'm always learning, because I never had met someone before who actually got their sensation back. So it's nice to know that you've got some tingling and I definitely I can feel sensation on the sides of my breasts. But my girlfriends and I you probably saw this posted just went to San Antonio. I had never met these breast cancer sisters of mine. They're all from different states and we all met for the first time in person. We'd known each other for a year and a half and we went and got our nipple and areola tattoos 3D. And somebody was asking me did that hurt? And I said no, because I can't feel it. Nope.
Speaker 2:Doesn't hurt at all.
Speaker 1:No, not at all, but they certainly do look really, really good. I have to say we are very happy with that.
Speaker 2:Yeah, I mean you can't tell, I mean honestly yeah.
Speaker 1:Yeah, I mean, you really can. It's a game changer. I came home and I flashed my husband and he's like, oh my God, like they look so real. Yeah, it's pretty cool. So where did you get your surgery done?
Speaker 2:So I live in Houston and so it was done through the Methodist Hospital here. But I have since moved everything to MD Anderson. And the reason I didn't go through MD Anderson from the beginning and I think it's important to say this is when everything started happening. I got my diagnosis, I had done my biopsy and a mammogram and an ultrasound through the Methodist Hospital because that's who my OBGYN uses. Once I got the diagnosis, which came from a radiologist at the Methodist Hospital, they were ready for me. They were like come on, we're ready to catch you, we're ready to go. And I did try and go through the chain of communication and the protocol and everything with MD Anderson. But when you first get a diagnosis, between getting referrals from one doctor to another and getting through the red tape of not just the hospital itself but the red tape of your insurance, which is a whole other conversation I mean don't even get me started that I had already had my port put in by the time my insurance had like even gotten in communication with MD Anderson, and so I did everything through the Methodist Hospital, which was absolutely wonderful. I have zero, zero complaints.
Speaker 2:The reason for me moving to MD Anderson now or I did a year ago is my oncologist left her practice and I felt like she saved my life. I was all in with this oncologist. But she went into another area of cancer and I think prostate, maybe I don't quite remember, but maybe pancreatic, and so I needed a new oncologist and my OBGYN got me straight in to MD Anderson along with Kendall, like we were almost a tag team. We got into MD Anderson together, which for her I mean I'll let her explain it it's a long process when you're undiagnosed. It's a crazy long process because it's preventative.
Speaker 1:Right, so that's what I was going to just ask, kendall. Is that? What was that experience like? Trying to get in there and take matters into your own hands and make your decisions of what you wanted to do? What was that like for you?
Speaker 3:It was really hard. I mean it was scary. It was unknown for me. I'd never had surgery before in my life or really had any testing besides, you know, when I was pregnant with my kids. So all of it was new to me. I had never been to MD Anderson or anything like that. But I knew that that's where this should take place. I knew that that's they're known for this. So it was just really difficult trying to get my insurance and my primary physician to kind of push me through MD Anderson, get me the referrals I needed. So it was hard and it was, like I said, scary. I didn't know really what to do. I was trying to have control but with insurance you have to let them take the reins and just kind of be patient. So it was hard.
Speaker 1:Yeah, did you get denied in any way at first, or did?
Speaker 3:I did Not by MD Anderson, but I did have to have initial scans. I had to have a mammogram, which, at 32 and even before that, I think, 31. Yeah, when I first started, you know, when I first got my genetic testing done, that was all something that's preventative. So I was denied multiple times to have these scans done because of my age, because I didn't have a proper diagnosis, which is a good thing, but of course it made it very difficult for me to get in where I needed to and it took, I want to say, almost more than six months to have some of my mammograms done and ultrasounds and things like that.
Speaker 1:So it was hard, very frustrating, yeah. So you got a really really good lesson in insurance and surgery, yeah.
Speaker 2:Well, one thing I'll add to this, and this is for anybody listening it would be real easy to give up, but you have to kick doors open. There's no way around that. And when you're told no over and over again, that just needs to give you the strength to just power through, because you cannot take no for an answer. And we decided together that, however many phone calls it took, whatever we needed to do, we were going to make this happen. And you have to exercise a little bit of patience, because these other entities have to talk to each other. They don't just talk to you, but there's a lot of red tape when you don't have a diagnosis but you're at high risk.
Speaker 1:So did MD Anderson advocate for you, kendall, I feel like they did in a big way.
Speaker 3:I feel like even up to right before my surgeries, I was getting denial letters from my insurance just based off the way that things were coded and I talk to my mom about this all the time just based off the way that things were coded, and I talk to my mom about this all the time. The fact that I am young and this isn't known I guess it's not widely known that you can do preventative care, you can get testing done, do scans to help you. I think it just makes it hard and the insurance is supposed to be looking out for you or kind of just like no, they're against you with this. So MD Anderson, I think, did a great job of making sure that this got done.
Speaker 3:Having everything be accepted by the insurance. It was really worry-free for me. When I told them you know, hey, I'm getting messages that it's being denied by my insurance they're like don't worry about it, we'll take care of it. So they helped out in the best way possible, even for someone that doesn't have a diagnosis. They treat you, you know, with the same care, you know, as everyone. I mean they really do such a great job of just really being like empathetic towards you.
Speaker 1:Right, and they're probably really good at sending a letter back and fighting the denial letter based on. So what I've learned about insurance is that when you get a denial letter, you write them back and you use the verbiage in the letter to be able to combat that. So and then usually it comes back. I mean, it is a relatively new term for a lot of people being a previvor, right? So that's what you are is you're a previvor, and I have several previvor friends that I've met throughout my journey and they've told me about the insurance and their whole experience. So did you do the same type of surgery that your mom did?
Speaker 3:Yes, I did. I did the double mastectomy, I did the deep flap, they did the reconstruction the same time and then my hysterectomy was different because I had a full hysterectomy. As to her, she had hers partially done years prior, hers partially done years prior.
Speaker 1:Okay, how is the sensation in your breasts?
Speaker 3:Well, I don't feel like I have much. I just had this done in October, so I think I have a little more time to recover. But when y'all were talking about doing the nipple tattoos, I'm getting that done tomorrow, so I'm super excited for that part. So at least I can be a little more whole, so I'm really excited.
Speaker 1:Where are you going? Is it in your hometown?
Speaker 3:I thought it was going to be a lot harder to begin with. They tell you that there's insurance that doesn't cover it. You have to pay out of pocket, you may have to travel. So I was like I don't really care about it, I don't need it. But then MD Anderson was like we do it here, it's done in office. So when I just went to the doctor last week they told me that they can do it here for me. They can send an appointment and insurance will cover it and everything. So I was like, oh well, I just won't do it. So yeah, it's all being done through my breast reconstruction.
Speaker 1:That's amazing. Have you seen pictures before and after, pictures of the person who does it? Do you know who you're going to?
Speaker 3:I don't, I don't Just one of the registered nurses. I don't know anything else about her except for that.
Speaker 2:to be honest, that has that specialty Right.
Speaker 1:I've interviewed a couple of nipple and areola tattoo artists One her name is Miroslava, she is in Houston. Then I also interviewed Perky the two nurses who have a medical spa called Perky, and they are in San Antonio. I had met them in person. I went to San Antonio for the first time in January it was January or February, I can't remember but I took an Uber and went there to meet them in person because I'd never met them in person. I just interviewed them and lovely, lovely ladies. I brought three of my friends, we stayed in an Airbnb there and got them done and it was a really neat girls trip experience.
Speaker 1:And so I'm excited for you, kendall, I'm excited to see you know, I'm so excited I don't need to see it. But I mean, if anybody ever asks me, hey, can I see them, I'm like hell, yeah, here you go. It is a game changer and it's really cool that they can do that and it's cool that insurance does pay for it. So, yeah, so, kendall, I want to wrap up a little bit with you first.
Speaker 1:So what is your role in bringing awareness to other women? Because, like you said, you know you're young and I've met so many women who were in their early 30s who actually did get breast cancer. Some of them were new moms, some of them were pregnant at the time, and so this is again one of the reasons I'm like, look, it's so important to learn about this stuff, even if you are young, because you're not too young, you're not too old, you're not too healthy, because cancer don't care right, and I'm going to come back to you, michelle, and talk about your book in a little bit. But what is your role in helping bring awareness to others about your situation?
Speaker 3:Yeah, well, I was just talking to my and I talked to her about this. All the time we talk about this all the time, me and my mom and I just think that I don't currently have a role I would love to. I will speak to anyone that wants to talk to me about it. I think it's so important to know what you can do at your age, what your insurance will cover, what kind of scans, what kind of testing genetic or otherwise that you can do to help yourself. I feel like they offer so many vaccines and testing at your age anyway, so why not add some of these into there, because I feel like they really could prevent a lot of women from my age from developing cancer or if they are. I mean, I didn't even know what BRCA was, to be honest, prior to this. So I feel like you know you give so much of your personal information to the doctors. They should use that to do some pre-screening to see like, okay, well, you might fall under this mutation or you can get this testing, and I think it would just be so important for women my age to know that that's out there, as opposed to just waiting until something happens to you or, in my case, my mom and then having to learn all this for myself. I mean, all my friends my age none of them know what any of this is.
Speaker 3:Your insurance doesn't cover at this age to do mammograms and things, and I think it's really important that if anyone else is going through this, I'd be happy to let them know my experience, because I really feel like half of it is the fact that you would have to have surgery and things like that, but the other half is the reconstruction and the healing and how your life can change for the better. I mean it put me on a health journey. Like my mom was saying, I have a tummy tuck now after having three kids. That's amazing, and I mean my boobs look better than they did, and so there are some positive things to it, the risk factor being the most prominent one. I feel like it's all very important, and now I'm working out and I'm eating better and it's just put me in a really great place than I was prior to finding out that I had this genetic mutation for sure.
Speaker 1:Right, and then being on that health journey obviously will help you down the road. If something does happen, you'll be in that good shape. I've heard things about not drinking alcohol, making sure you're exercising, so one of the things that I did. Well, I'd already cut back on a lot of alcohol two years prior to my cancer, which I think was very helpful, and then I didn't drink anything during cancer and I drink periodically, like very periodically, and not a lot or anything like that. So there's a lot of things that we come out on the other side with such a different mindset about things that we put in our body and how we move our bodies. So that's just really awesome, kendall. Thank you for sharing that.
Speaker 1:Michelle, I do want to talk about your book, because one of the things that people have said to me is like oh, jamie, you know your experience, you should write a book. And I'm like I don't want to write a book. That wasn't my wheelhouse and I am a good writer, but it's just not something I wanted to do. But I did know how to podcast and I love holding conversations with people about their experiences. You wrote a really amazing book. Tell us about that, thank you. Well, we know why you named it. I'm assuming and I actually have watched a video of yours about you were healthy and all that and cancer. Don't care, but tell us about the journey of that about you know you were healthy and all that and cancer.
Speaker 2:Don't care, but tell us about the journey of that. Yeah, so from really the moment I was diagnosed, I began to write about what was happening. Not just write about it, but photograph it, video it, share it with the world. Because I wanted to be able to, number one, share the information about what I was going through with my extended friends and family so they didn't have to say you didn't have to have the same conversations over and over again, but also so that they could see, day to day or week to week, what I was going through in a very candid, lifting the veil kind of way. But it is my natural inclination to just write about my life. It's what I've been doing my whole life. And so what happened in terms or I guess what the start of me writing the book was? After I'd had my surgeries, I'd had chance to heal and recover and I realized the thing I hadn't done at all was to process what happened. And I think that this is a very common thing that I hear from other women who have experienced breast cancer that everything's just moving so fast that there's not time to stop and think and understand, and I'm not saying we'll ever really understand why this happened or whatever. But writing about it allowed me the appropriate place, I think, to cathartically spill out everything that happened, and so I thought that number one it's the book that I wish someone had given me.
Speaker 2:When I was first diagnosed, I did receive lots of books, as I'm sure you did. Many of them were anatomical or clinical or just seemed very disconnected emotionally. I needed something more emotional, and so I wrote this from a very emotional place, but I think that it's filled with love, hope, positivity, inspiration. It's got a lot of humor to it. It's, like I said, very candid and raw. I wrote it close to the bone because everything that happened I mean it doesn't get any closer to the bone than that, and so I just wanted to be able to let other women know, through my story, that there is hope, there is positivity, there's life after cancer. That's a big part of it. We talk a lot about what we're going through in the trenches, but what happens after that? People forget you. Sometimes they were right there when you were going through cancer and going through treatment, but a year later sometimes you feel like, hey, I'm still here, come around, come see me, call me, whatever. And so there's still a lot of, I think, loneliness and isolation that comes with the territory, and there's also fear that comes with the territory we live every day with. Is this coming back? What do I need to be worried about? And we're so uber focused, I think, on our own bodies. We're checking and feeling everything all the time to make sure that everything is good, and so with the book, I wanted to be able to offer that hope to other women, offer it to their caregivers, their family members.
Speaker 2:But I think it also goes beyond cancer. I mean, while it's absolutely a book about my breast cancer journey, I think there's a lot of life lessons, because anyone who's gone through cancer or even any health crisis, there's a lot of life lessons you get from that. It's not just about the disease or the diagnosis or whatever, and I thought that a lot of those things that I experienced, that were teaching moments for me, would help other people, and so I rolled those into every chapter of the book because I think it's just so important and I think, ultimately, it's my way of trying to pay it forward to the many people who came out for me and supported me and encouraged me and motivated me and Kendall kept me laughing. You know, when you're going through the shit which is what this is you've got to have moments of laughter. I mean, that is so, so important.
Speaker 2:And I approached my cancer journey, I mean from the very beginning, with an attitude and setting the tone that this was going to be. Everything around me was going to be positive. We're going to bring everything up. There's not going to be tears, there's not going to be negativity, and I talk about that a lot in the book because I think that's as important as anything else that we're going through in terms of our treatment. It's our attitude and who we surround ourselves with and what we allow in, what we have to keep out all of that stuff.
Speaker 2:And I think it resonates with people, whether they're going through a health crisis or not, to kind of reevaluate what they have going on in their life, what their priorities are, who they're allowing in their orbit, the importance of family and love, and things that maybe are less important, like your career, or you're having a type A personality. I think I've spent most of my life, or most of my adult life, as a type A person, but I am comfortably type B. I let a lot more things just be, and I'm happier down here than I was at level 10. I like it right here. This is pretty cool.
Speaker 1:Yeah.
Speaker 1:Yeah, that's what I mean by you know. We kind of change in ways like we are, jamie and Michelle, at the core, right At what we were before. But there are a lot of things that happen because of the cancer and, again, who you allow in your life, and we do find out, too, what people are like. So there were some people that I thought, oh my God, I thought they would totally show up for me, but they didn't. And then you have these wonderful angels that some of you didn't even know, who are showing up for you, and I think that's just human nature and I think that sometimes people just don't know what to say or anything like that. So I love the fact that you wrote a book like that and I feel like it's been probably pretty healing for you.
Speaker 1:For me, I was in my first year of retirement Weird for you. For me, I was in my first year of retirement Weird. Like we all know that when people retire, it's an adjustment in itself, right. So my husband had just gone through his first year of retirement and he was trying to figure things out Like, what am I going to do every day? How is it, what's this going to look like. And then, literally one week after my retirement parties, when I found out about my breast cancer. So I spent that first six months in treatment and surgery and all that.
Speaker 1:And then February of 2023 came around and I was like I was still in my first year of retirement. I'm like I don't have any significance, I don't know what I'm going to do all of those things and it occurred to me that not only had I just become a cancer like that but I was like what is going on? And that is when the idea of the podcast came about, and it turns out that it has been incredibly healing to me. So some of those people who have gone back behind the curtain or doing their own stuff cause, you know, we're all in the business of busyness, right, and they're all busy with their lives and we're wondering where they are it's like, hey, I'm still here. So this has been very helpful because I've been able to connect with people like you and it's like we're friends, right, we haven't met each other in person, but we're interviewing we're telling our stories right.
Speaker 1:It's a huge sisterhood for sure? Yeah, well, I'm glad that you wrote that book.
Speaker 2:Well, thank you. It's interesting, though, too, because people will put you in communication with somebody. I mean, this happens all the time. I'll have a friend of mine say hey, you know, my next door neighbor just got diagnosed with cancer and she's got a whole bunch of questions. I know this sounds crazy, but would you mind calling her? I'm like yes, what's her phone number? Here's my phone number, and I talk to people.
Speaker 2:I hate to say all the time, but it is very frequent because, as we all know, right now cancer diagnosis are sky high, and I always encourage people hey, if you or someone you know God forbid gets a cancer diagnosis, or they want to talk, or whatever the case may be, please pass my phone number around, because I think it's so important.
Speaker 2:Like I said, there's a lot of people who came out for me, made themselves available for me, and a lot of those people much like in your experience, were people I hardly knew or didn't know at all, and so, now that I'm sitting here in the comfort of my cancer-free world, I want to give back in every way possible, and Kendall and I talk about this all the time. There's so many wonderful organizations locally and nationally and regionally, and I do want to get involved on a larger scale and volunteer and do these things, but there's so many of them that in itself is overwhelming, because I want to go where I'm needed the most. And so now I've kind of done it organically, through word of mouth, of speaking to friends of friends of friends or relatives of friends or whatever, to try and help them understand or help them to know that what they're feeling is absolutely normal.
Speaker 2:You know, because you think, am I the only one?
Speaker 1:Yeah, no, I get a lot of people communicating with me saying, yeah, my friend from high school just got diagnosed and would you mind? Or they the last questions, and it's astounding how many times it happens, right? So, like I hear from somebody, even once a week, it's like, oh, my God, so much, so much. So, as we wrap up, because we're coming up on the hour, how has this Kendall changed your relationship with your mom? Like, how does that look for you now?
Speaker 3:Well, I think a lot of the things that we used to struggle with in the past when I was a teenager is what really has brought us closer together now. Like a lot of the traits of us feeling like we didn't understand each other or you know, just arguing typical mother-daughter stuff I feel like we're just so similar and we just never really found our footing. And ever since going through this, like my mom has made it her mission to not only make sure that she's cancer free but that I'm going to be cancer free for my life, and that's super important. It sounds crazy, but like doctor's appointments have just kind of like been our thing and we just bond over this experience. Really, I mean, it brought us like very closer and we hang out all the time now and she's my friend now and we're close and it's been great. So there's definitely some positivity that came out of such a dark time for sure.
Speaker 1:Yeah, doctor's appointments. Wow, who knew, like whatever works, right?
Speaker 2:No, I love the fact that you guys are, oh yeah.
Speaker 1:I'm sure, I'm sure I love that. Well, is there anything else, michelle, that you would like to leave us with before we wrap this up?
Speaker 2:A piece of advice for people who are newly diagnosed and you've got all this stuff swirling around Kendall and I were talking about this earlier today too is that I learned from the first day that a lot of things are going to be out of your control and you have to just accept that and learn to control what you can control Whether it's, like I said, the positive attitude that you have and deciding who gets to be around you, how much you move your body, what you eat, that type of thing. But just understand that it won't always be like this, but for now you're going to give up a bit of control, but control what you can, and attitude is huge, positivity is huge, and I really think that it helped me get through what I got through.
Speaker 1:Great. And also I, like you, have a website here, michellesandlincom, that I'll have in the show notes and also all of your social media handles and where they can buy your book.
Speaker 2:Buy my book on Amazon.
Speaker 1:Cancer, don't care. It's an adorable picture on there and Kendall. What would you like to leave us with before we wrap up? On there and Kendall, what would you like to?
Speaker 3:leave us with before we wrap up, what kind of advice maybe do you have? I would just like maybe say to the women my age is just try to talk to your doctor, see what kind of screening if any that is covered that you can do, so you can know what you can do to prevent this, because it's very important. I didn't include when I was explaining about my decision to have surgery, but they actually found some precancerous cells after my surgery, my hysterectomy, I don't remember, I think of my fallopian tubes, right, my uterus lining. So this basically could have saved my life and I don't even know it yet, something that could have happened. So ask what you feel like you need to ask. I mean, try to see what all you can do to help anything happening, not just cancer, but just try to talk to your doctors. It's very important to be honest and open with your doctors.
Speaker 1:Right, yeah, and notice what's going on with your breasts. You know, I mean visually and physically. And if you notice any changes, don't give up. Keep talking to your doctors. Be that pain in their side, yeah Well, thank you. This has been such a nice conversation. You two are lovely. Who plays the drums? That's mom. That's me Rocking out there. Right, you're like a jack of all trades. Right? A writer, a drummer, I don't know. I love the picture on the drums too.
Speaker 2:It's all part of the creative I love it. Well, once upon a time I looked like that Now gray hair, you know.
Speaker 1:You're absolutely gorgeous. I think you're beautiful. Well, I really appreciate both of your being on here and telling your story.
Speaker 1:I think, it's very valuable. Yeah, I feel like it's very valuable for the audience, whether they've been diagnosed or not, and to my audience. Thank you again for joining us on Test those Breasts and, as always, it's incredibly helpful to go to your favorite platform, that you listen and rate and review Test those Breasts. It's so helpful to get it out there to more people, and so I would appreciate that. And until next time, we'll see you on the next episode of Test those Breasts. Bye for now, thank you, friends.
Speaker 1: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 to 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 and, as a reminder, rating, reviewing and sharing this podcast will truly help build a bigger audience all over the world. I thank you for your efforts. I look forward to sharing my next episode of Test those Breasts.
