[00:00:00] Adam Walker: From Susan G Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room. Welcome to the Komen Health Equity Revolution podcast series. Each month we invite in patients, community organizations, healthcare partners, researchers, and policy advocates to discuss strategies and solutions that drive the health equity revolution forward for multiple populations experiencing breast health inequities.
Once breast cancer treatment ends, you can hardly wait to get back to normal life again, but your body may not respond as fast as you expected to. Your relationships may feel different, and you may soon learn that you will need to adjust to a whole new normal in your life. Things don’t necessarily go back to the way they were before. These realizations can be all challenging from an emotional and mental perspective and may take some time to accept. Lauren Tarpley is here today to discuss the reality of what survivorship can really look like after treatment and how she was able to move past the disappointment of trying to get her old self back and to create a plan for her future. Lauren, welcome to the show.
[00:01:07] Lauren Tarpley: Thank you. Thank you for having me. What an intro.
[00:01:11] Adam Walker: I really appreciate you taking the time, this is an important conversation and I really want to hear more about it, but let’s start with your story. So tell us about your diagnosis because I understand it was a little atypical. And can you just kind of walk us through that?
[00:01:26] Lauren Tarpley: Sure. Diagnosis. Let’s take a trip back in time, no. So I was 34. I had been getting annual mammograms since I was 30. My maternal grandmother had breast cancer and so, like I said, 30 just seemed like a really good benchmark to get my life together and get a lot of baselines out of the way. I was on my way to getting married and I wanted to have kids. And so I just wanted to get checked out. So 30, 31, 32, everything was great. At 33 I had a baby, so had a different kind of imaging, all that stuff. So we’re in the middle of the pandemic. It’s, July of 2020 and I had missed my one year mark because, a lot of doctor’s offices were closed, things like that. And I had gone to the OBGYN to check on a pregnancy that I was in turn losing. So that is unfortunate, but a lot of the interviews I’ve done and a lot of the time I talk about my diagnosis, I kind of leave that part out just because I never want to overshadow the diagnosis. And then also that’s just compounded, bad news. And so I leave that out sometimes. But, yeah, we were there to confirm that we were losing a pregnancy and you have to go every day for the blood work. And on my last day, I had a list of concerns. I was like, I might not be able to get back in here. It’s the pandemic. I had a list of concerns to go over my doctor with, but it just so happened that my doctor was out with COVID and it was just the on call doctor that was going over my blood work. And I read in my list of questions and the last one was, “Hey, you know, I’ve got this nagging pain in my armpit. It’s been happening for a few months now.” And, I texted myself when I remembered. And so I went over that with him and he said, “Oh, okay,” he examined me. He said “It looks like an ingrown hair. And if it gave me any trouble, you know, moving forward to come back.” So I was not ignored, I wasn’t dismissed, but I genuinely didn’t feel heard because we all know what an ingrown hair looks and feels and it didn’t feel that way.
It was a dull, nagging pain. It wasn’t a sharp pain. It wasn’t shocking when it happened. It was just annoying. And so from there, that answer didn’t sit well with me. I had my order for my annual mammogram and I called the imaging center. And I just said, “You know, things might look like they’re lightening up-” you know, perspective from July, 2020, things were opening back up. And so I called and they said, “We had a cancellation. Why don’t you come on down here and get your mammogram?” It was a guardian angel. It was a blessing. I went in there, I had my mammogram and a couple of days later I got a call that said, “You had some asymmetry, you have some calcifications on your mammogram. We’re not really, worried. We just want to get a different picture. We want a different, with a, a different kind of monitoring.” And I said, “Okay,” and they didn’t really seem like they were too concerned. So I wasn’t very concerned. And also another guardian angel right then and there, my doctor called me. So my doctor who had been out with COVID called me. Because she had received those results from the mammogram, but also she was calling to check on me from the miscarriage. So, I went over those results with her and she was like, “You’re definitely going to go and get the follow up imaging. That’s very important. I don’t care for the wording that from this report and the findings, and I would like a different view as well. “So because of that call from my doctor, I went back. And I went back, they did the different imaging. They requested a biopsy and then from there I was diagnosed.
[00:05:17] Adam Walker: So, I mean, you know, you’re 34 years old. That’s extremely young to get a diagnosis. what was that experience like getting that diagnosis at such a young age? I mean, you’ve been going in for mammograms, so were you genuinely surprised or not?
[00:05:31] Lauren Tarpley: I was genuinely surprised because I didn’t have any of the other symptoms, all of the symptoms that you commonly hear a lot or puckering or discharge or blood from your nipple or anything like that. All of these extremely unfortunate things point to breast cancer, but I didn’t have a lump, I was irregular to be completely transparent. I was irregularly doing my self exams. But I didn’t have any of those common symptoms. So I was completely knocked sideways. And I want to say this with a caveat; when I got that news, which I feel like a lot of people do unless they have been around cancer a lot, I immediately thought I was going to die.
[00:06:14] Adam Walker: Now, I mean, so did you start treatment right away? I know you said there was supposed to be a delay for the referral. I mean, how did all that work out?
[00:06:21] Lauren Tarpley: So I am, I call myself professionally persistent. I ended up being seen three days later. I ended up being seen that Wednesday, not two to three weeks later by the referral that my GP had given me. And I do not blame him at all. All GPs know is people on their network and who they’ve been told to refer people to.
But that first referral did way more damage than someone calling me and telling me I, she was going through all of the scenarios. “If you are stage four, if this has spread, if it has done this, we need to get you into a PET scan. We need a biopsy, your lymph nodes. We need to do this. If this has happened, this will happen. If this hasn’t happened-” I’m like, “I need you to start over at breast cancer, right?”
[00:07:03] Adam Walker: Yeah, right. Let’s start at stage 1 here.
[00:07:04] Lauren Tarpley: It was a three hour- yeah, it was a three hour appointment. I’m doing genetic testing. I had my lymph nodes biopsied on both sides, like all the things my mom is there. She’s telling family history. I didn’t even know about, but it was a lot.
And I did have to change surgeons after that appointment. I never saw that doctor again. The surgeon I have now is a literal angel walking among us. She is the antithesis of that other doctor. So again, that’s why second opinions are so important. But I ended up being permitted to do IVF because we were in the midst of trying to expand our family. So in the next month I had PET scans, CTs, biopsies. I mean, I had, M.R.I.s, I had brain M.R.I.s. To make sure I hadn’t scratched my brain, I had bone scans, I went to the court place, I did a round of I.V.F and then I started chemo the day after my egg retrieval, I started on October 8th, which is my husband and I’s anniversary. So later, I started chemo after I was diagnosed.
[00:08:11] Adam Walker: I mean, that’s a lot. How did you hold it all together?
[00:08:16] Lauren Tarpley: While working full time with a baby.
[00:08:17] Adam Walker: Yeah. Yeah. So, how did you keep it together?
[00:08:21] Lauren Tarpley: I didn’t handle it. Well, I had no idea what to do. I thankfully no one in my nuclear family had gone through this personally. They’ve all been caretakers, it was a shock for all of us. It was a learning curve for all of us. I mean, genuinely when it happens, you have no idea what’s happening. You go to each, they tell you what they expect to happen. They tell you what’s happened to people before, but I had questions like, “What happens to African American women? Our hair is different. So is it going to fall out as quickly or will it fall out later? Does it all fall out at the same time?” No one told me about my nose hair falling out. Nose hair is extremely important. People, I had nose bleeds for five months. There’s symptoms they just don’t tell you about. I didn’t throw up. But I definitely had some stomach issues. So, in chemo teach, they talk to you about your hair falling out, growing up, they don’t tell you about losing taste, they don’t tell you about losing smell. They don’t tell you how the steroids are going to keep you up for days. They don’t tell you how everybody thinks you’re going to get chemo and just be super thin.
Like those are different cancers. I Shrek out. Like I thought I would, I turned into Fiona, I gained 40 pounds in a blink of an eye and I lost all my hair. It’s just, the treatment is going to treat everyone differently. And so it’s important to tell you what could happen, but you never know what’s going to happen.
[00:09:44] Adam Walker: So I’m curious, what did your support system look like and what did you need from them during that time?
[00:09:49] Lauren Tarpley: So, the support system for me was just, it was who was around because it was covid. I lost the majority of my friends. That’s just a fact of the matter. I haven’t spoken to them since.
I told people on Zooms or FaceTimes and I said, I’m telling you this so you can get checked. I never thought it would genuinely, I never thought it would happen to me until I was 70 or what have you. As much as you can fathom that being diagnosed, “Oh my God, Lauren, I’m so sorry. Please let me know if there’s anything you can do.” Never heard from them. There are a couple of people who this brought us closer to. We reunited, we became closer, and we are good. My family has been a rock throughout. My in laws have been instrumental. My parents, my sister have been instrumental, and my husband has been the most supportive person.
[00:10:34] Adam Walker: So now that you did finish treatment on time and you rang the bell, how have you been able to take power back and focus on what your plan for the future is going to be?
[00:10:45] Lauren Tarpley: So I wrote everything down and then after I felt like I was kind of in the clear I started looking for people that were like me that were young and or mothers and or African american it didn’t have to be all of the above but I wanted to find people that I could commiserate with and share information and I found a huge community online.
I mean Susan G Komen was very helpful in that, because it’s like someone tag someone tag someone and I mean now I’ve got thousands of people that I interact with at least weekly and now, I’m super busy. We just had a baby and I’ll definitely get to that but I just wrote everything down and then I was super transparent everything I would talk about my stomach issues or how hard it was to like potty train someone when I’ve got all this, I’m trying to potty train a boy, which is hard in and of itself, but while going through treatment, while being stuck at home, while having to lice all our groceries, because we were still doing that. All of that stuff, and so that’s that, and that’s how I got through it. And that’s how I just realized like how much of a monumental impact everything had been.
[00:11:53] Adam Walker: Wow. All right. So, so Lauren, last question. Do you have any final advice you’d like to share with listeners about how to navigate survivorship and in particular those who are younger?
[00:12:03] Lauren Tarpley: So the one thing, and I’m really glad, I’m really appreciative of you guys having me on today, especially about the topic of survivorship. Survivorship is, I think it’s almost more taboo than talking about cancer. Because there’s treatment for cancer, right? everyone, is against cancer. There’s no one that’s for cancer, right? But we know what we’re, we know what to do.
“Are you on AC? Are you on Taxol? Are you on TH? Are you doing 6, 18, 21 rounds? Are you doing surgery before or after chemo? Do you have to do radiation? Are you doing proton?” There’s these questions. Then you get into rehab. Then we got the surgery. “What surgery are you going to get? Which recon are you going to go?”
And I know this is more applicable to breast cancer. Instead of just all cancers. But so then that’s where the line is, right? You’ve got treatment, you’re finished. You ring the bell, you’re in remission. And then everyone expects for everything to pop back when everything is literally shattered. Your life, your relationships, your sense of self, your like, what do I look like? Who even am I? And meanwhile, we’ve been living this time in a seat for arrested development. So sometimes I still feel like I’m 34 and I’m not. I’m 38. 40 is right around the corner. My kid is starting kindergarten, but I still look at him sometimes like he’s 18 because it’s like hot tub time machine And I got hit in the head in the 80s and I just wear pastel windsuits all day, right? That’s kind of what it is. And so I think again I think survivorship is just this taboo because no one wants to get into the weeds or in the nitty gritty of how mental, how much of a mental fight survivorship is. You are against your greatest fear, right? So you’ve already had your greatest fear shoved in your face, your premature mortality. So then somehow, you compartmentalize or just disassociate and you get through treatment and you get through that and you smile at social events and whatever, and you do what you have to do. And you do whatever you have to do, right? But then when you get to survivorship, there’s no one telling- there’s no survivorship teach. There’s no chemo teach. It’s not like you’re going to- progress is not linear. You know, there’s no one unless you seek out a trauma therapist, which I have. That was, which was a referral for me from my oncologist. But per my request, that wasn’t something where they were like, “You’re a survivor now, so here are your tools.” And so that’s why I felt like I had to write a book about it because again, even when you’re in treatment, there are countless brands. There are people lining up to help you.
Since I’ve been a survivor, I have qualified for two grants in two years. When I was in treatment, I easily got 20. The bills still come. The monitoring still happens. The appointments are still happening, the money is still going out. The money is still being requested from me. But there’s, no support, right? I have to seek out my mental health support. I have to seek out my own community of survivors. You have to tap in and out when you can and with whatever bandwidth you have. But, that’s the hardest part to me, I would say. Because there’s just, it’s these open ended, there are no expectations, and there’s no one leading you, and everyone around you is saying, “Well, you’re healthy now, so act like it. Look like it. Feel like it. You should be grateful. You should be happy.” And we can’t tell people how quickly to heal from their personal traumatic event.
We can’t. There are some days I totally forget I went through it. And then there are some days I can think about nothing else. This is to people who are in treatment. This is to people who are out of treatment. This is to anyone who’s just diagnosed. I’m going to say this very eloquently. Do whatever you want.
Talk to your oncologist. But I will tell you, I don’t drink anymore. I never thought I would say those words. I never ever, I love- I loved drinking. It’s social, it tastes good to me. It made me feel light and airy and all these other things. I never thought, almost three years after diagnosis, I would say I don’t even drink anymore. I genuinely don’t want it, I don’t go out, so I don’t need social lubrication. But when I was in treatment, I talked to my doctor and I said, “I really enjoy wine.” And he’s like, “Then keep drinking wine.” And I was like, “Well, sushi is my favorite food.” And he’s like, “Well, then you should eat sushi as often as you can stomach to eat.”
And I think that there are these preconceived notions about what causes cancer and what doesn’t. And there are very few things that are bonafide causing, this is where your cancer came from. I think you need to talk to your doctor about what your specific illness is, what your subtype is, and what is going to be detrimental to treatment. And if it’s not, then live your best life because you are still alive.
[00:16:50] Adam Walker: All right. All right. That’s Good advice. That’s good advice. So Lauren, thanks so much for joining us on the show today. Really appreciate you sharing your story with us.
[00:16:57] Lauren Tarpley: Thank you so much for having me.
[00:16:58] Adam Walker: And thank you for joining another episode of the Komen Health Equity Revolution podcast series. We will continue to galvanize the breast cancer community to support multiple populations experiencing breast health inequities to advance and achieve breast health equity for all. To learn more about health equity at Komen, please visit komen.org/health.
Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.komen.org and for more on breast cancer, visit komen.org. Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog, adamjwalker.com.