Survivorship: From the Loneliest Starting Point to the Greatest Silver Lining

[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.

[00:00:17] When active treatment ends and the last appointment is over, you are feeling many emotions. Normal is nowhere on the list. This is a point upon which most everyone can agree – there has been a great deal written about the harsh reality patients face when treatment ends, and even that word – patient. You really are no longer a patient, and that in and of itself requires a mindset shift. For all these weeks and months of treatment, a patient is all you have been. And now you’re back to your Before Life. But nothing feels like Before. Today’s guest felt ill-prepared for the abrupt end of treatment and the challenge of jumping back into the rhythm of what her life looked like before breast cancer. She thought about what she wanted her survivorship to look like and found a way to take something painful and turn into something purposeful. Rebecca Walden is here to share her story with us and how she now writes about her experience to help, inspire and heal others.  Rebecca, welcome to the show!

[00:01:16] Rebecca Walden: Thank you for having me. I’m so honored to be with you.

[00:01:19] Adam Walker: I’m really excited to talk about this and I gotta be honest, I’ve never really thought of it from this perspective before about, you know, like you kind of go back to that before life, but it’s not the same before life. And how do you adjust to that? And so I’m really glad we’re having this discussion.

[00:01:33] But let’s start with you let’s set the stage and hear about your breast cancer story. So can you give us kind of an overview about your experience from diagnosis leading all the way up to today?

[00:01:42] Rebecca Walden: I can. So I had a screening mammogram in May of 202 I was 42 years old. Just I’m a little embarrassed to say, I’m the daughter of an OBGYN, so I’ve grown up knowing about proper self care.

[00:02:01] And I had not had a mammogram since my baseline when I was 37. There was just a nagging feeling, and I think it was the God wink like, girl, you’re being irresponsible. Just make the appointment. And I did, and I figured I’d sail through it and jump back into life and, you know, see you in a year. And they called me back for a diagnostic, and my mom was like, no sweat, I’ve gotten plenty of these, it’s never been anything.

[00:02:30] So I went, feeling the same thing, like, okay, cool, like, let’s do it. It’s kind of an inconvenience, whatever. And the radiologist came in to talk to me before I left and said, this looks suspicious, so you’re going to need a biopsy. Then I didn’t feel quite as cavalier, we’ll say. So, the biopsy showed ductal carcinoma in-situ DCIS which is considered stage zero. Even at that point, my husband and I kind of thought, lumpectomy, like we got this little bit of an inconvenience, whatever. The pathology came back and showed it’s actually stage one, it’s invasive, the margins aren’t clean, you’re going to need more surgery.

[00:03:13] So, I had a second lumptectomy, I think, within like a 10, 12 day period. And then that pathology came back with more bad news. September 16th here coming up will be 3 years to the day from my… I had a single mastectomy and a deep flap breast reconstruction all in one surgery. And I consider since that’s the day that all known traces of the tumor were removed to be my cancer-versary.

[00:03:41] So, it’s actually a pretty cool and hopeful day that’s coming up. Beyond the surgeries, I did have what’s called the Oncotype. It’s a genomic test on the actual tumor. And those results were not what we had hoped for them to be, so I ended up proceeding with 16 rounds of really aggressive chemo and then a final reconstruction in June of 2021. So it was a pretty long 13 month period.

[00:04:11] Adam Walker: That’s a long journey with, it sounds like a lot of… a lot of ups and downs, or I guess a lot of struggles, you know. So, so talk to me about how you felt once your active treatment ended? Like, what was that like? What were some of the emotions you were feeling?

[00:04:30] Rebecca Walden: Relief, exhaustion, uncertainty. Part of my care regimen. So my… one thing that I learned not having any close experience with breast cancer is how individualized it is. How many subtypes there are, and in my particular case you know, no, no BRCA history and the oncotype indicating that my risk of recurrence is significant. Mine is hormone positive, which does at least afford me the opportunity to be on Tamoxifen. And that is a medical intervention that, you know, your triple negative folks, they don’t have.

[00:05:14] Along with all of those initial emotions was, I have to take an oral pill for five years, and then at five years, we’ll do a test. I have to be prepared. The recommendation would be to take it for ten years. And it’s going to come with its own side effects. There was also a reckoning of, what my friend Nicky who is also a survivor, calls chemo leftovers. And I kind of giggle at that, but it’s such an appropriate phrase. So that’s just in a nutshell, kind of the headspace I was in those first few days, weeks, even that first month or two after treatment.

[00:05:52] Adam Walker: Okay, and I understand you also have a lot of questions about, like, what do you expect next? Like, what’s going to happen. Which is certainly something that I think will resonate with a lot of our listeners. What were some of those questions that were top of mind for you? And what kind of answers did you get?

[00:06:06] Rebecca Walden: Well, chemo leftovers was probably top of the list. You have had poisons, you’ve had a high level of toxicity that has been accumulating in your system for a good reason. But, you know, let’s not pull any punches. It is a barbaric treatment. And I wanted to know… I wanted a baseline.. I’m just intellectually curious by nature.

[00:06:31] I’m not going to make decisions or feed emotions based on the internet’s opinions, right? There is not, even if you look at the peer reviewed scientific papers, there’s not a lot of relatable, accurate information about… it may take you 6 to 12 months to feel normal. And this is the range of what you can feel while your body is trying to right itself.

[00:07:05] So really, that was the heart, you know, of my questions. And there were some personal appearance things, which sounds shallow, but it isn’t. It’s an integral part of what you give up and then part of your healing. So I wanted to know practically, Hey, right now I don’t have any eyebrows and nobody told me they fall out at the end of treatment.

[00:07:29] So that was rude. Like totally not cool. And I don’t have eyelashes. And I kind of look like Pig-Pen.,That’s what I felt like from Charlie Brown, because you kind of have a stray baby hair here and there, and your scalp is breaking out because the hair follicles are trying to recover. And you still smell chemicals just when you breathe, you smell chemicals when you use the restroom. Everybody else in your life that hasn’t had an intimate experience with that is, is sort of in that mindset of, “Praise God. You’re done. Like you’re back. You are back.”

[00:08:07] Yeah. And then you feel that responsibility to show up that way, but that is not your reality. So all of my… to answer your question in summary all of my questions were really in that lane. Just give me a baseline so that I can level set and recalibrate what the next 3, 6, 9, 12 months of my life is going to look like.

[00:08:31] Adam Walker: Yeah. You know, it never really, I mean, again, like it, it never really occurred to me. And in all of these years of conversations, like how long it must take to get back to that, that normal or that, you know, just level feeling, you know, kind of like yourself again. And every, and also now I really appreciate you sharing how when people, you know, it’s all, you’re done, you’re good, you know, you’re set like they want to celebrate with you and then you almost have to like almost perform for them and I hate that. But I, but I can, I understand where you’re coming from with that. I appreciate you sharing that.

[00:09:05] All right. So, so then as you started trying to figure out your new normal you’re doing research, what did you find? What kind of support did you find? What were you looking for?

[00:09:17] Rebecca Walden: I wanted community and I was precise about my community, I had zero interest in showing up to anything that was described as a support group. And if I’ve misjudged that, then shame on me. But in my mind, that would have been, you know, metal folding chairs, forgettable coffee, people crying, and kind of a group facilitator and that, that was going to do me more harm than good. So for me, when I say community I wanted fellowship with people who are also survivors because there’s something that is so intangible and beautiful about being in fellowship with people who get it.

[00:10:09] And I wanted whatever that fellowship was to offer more than just, “Isn’t breast cancer awful?” So, several really serendipitous things happened. One being I don’t know if you’re familiar with the non profit Casting for Recovery. They’re based out of Bozeman, Montana. I can see a poster, actually, in my oncologist’s office for, they do retreats for men, and then they do retreats for women.

[00:10:41] They also have recently introduced retreats for metastatic patients because there’s a whole different set of needs for that population. And their retreat is centered around fly fishing. I’m a girly girl. Like the last time I went fishing and a minnow touched my hand, I screamed and I threw that thing 50 feet in the air.

[00:11:03] But I thought, you know what? This is cool. They choose it by lottery. They cap… so it’s a weekend retreat. It is fully funded. If you are chosen, you get yourself there and you’re treated like royalty and you don’t pay a dime. You’re just blessed. So, Miracle of Miracles, I was chosen the first year I applied.

[00:11:25] I mean, I had survivor friends that have applied for years and have not got in. And they do these, I believe it’s in all 50 states. So, at that retreat and I think I mentioned they cap it at 14 people. And then plus there is medical and support staff. So, you have a real intimate population.

[00:11:45] I made several friends. We actually, three of us still get to, four of us still get together. I call them my silver lining sisters. And, you know, just as this is the magic of relationships you kind of have this serendipitous encounter with someone and there are some people, they just something about their energy. Like, you just dig each other. So there was fellowship within that retreat, but then from that core group from the silver lining sisters. I learned that here in the Dallas area, there is something called dragon boating. I didn’t know what dragon… do you know what dragon boating is?

[00:12:22] Adam Walker: I’m familiar. I’m familiar. I’ve never done it, but I’ve talked to people that have done it.

[00:12:26] Rebecca Walden: Well, it is rad. And I say that again, as a girly girl that I was not a sports girl. Like I played soccer my freshman year and pretty well sat on the bench, right? So I… sports is not God’s gift for Rebecca, but there is a dragon boat team in Dallas. I’ve nothing but breast cancer survivors.

[00:12:47] Adam Walker: Oh my gosh. That’s amazing!

[00:12:49] Rebecca Walden: There is an entire international organization of breast cancer survivor dragon boat teams.

[00:12:57] Adam Walker: That’s awesome. I love that.

[00:12:59] Rebecca Walden: So from that Casting for Recovery retreat to fusing this really strong friendship with this core group of ladies I’ve mentioned. They said, you know what? One of them was on the team. We call ourselves Pinks. It’s Dallas United crew pink or DUC pink, and you should come. And I was like, okay. So, this is my second season. And I mean, we just went to Vancouver. We competed in an international festival there. We’re going to France, I think, in 2026.

[00:13:38] So, in contrast to what, in my mind, a support group looked like, those are two avenues I chose. I’m actually having dinner with a bunch of the Pinks tonight. Those are two avenues where I have become really close to women that otherwise I just, I can’t imagine how we would have met. And they are cool, dude. They are cool people.

[00:14:04] Adam Walker: That’s amazing. I mean, it’s amazing when you find your people, you know, it’s just such a magical thing. And it’s very, it’s inspiring to me that you’ve been able to do that. And I also understand that this inspired you to do something that’s important to you. So what did it inspire you to do and tell us all about that?

[00:14:20] Rebecca Walden: It sure did. So I needed to take a beat after active treatment. So I finished chemo actually Holy Week of 2021, which was pretty cool in and of itself. And then I had my final reconstruction surgery in June. Going back to the beginning of our conversation, I had a lot physically and emotionally that I needed time and space to allow myself to process. I knew that I wanted to write about my experience and I wanted to write about it in blog form on Instagram, on Facebook, where it would be easily accessible.

[00:14:58] And this was hard for me. As gregarious as I am with you now in this conversation, I’m an introvert. That’s how I test. That’s how I rest and restore my soul. So to create I already had public social media accounts, but to get to the point where I was willing to speak. To put myself out there in such a vulnerable way.

[00:15:23] It was not something I was ready to do until I was about six months out of active treatment. It was just too triggering and too raw. But time heals, right? Cliche or not, it’s true. And I just felt very God-led. I thought all of the details down to how I felt when I had my bracketing procedure before the second lumpectomy.

[00:15:45] Those details are going to fade with time and people need this information now. And who am I to hide behind introversion? If I can put content out there and just a girlfriend talking to girlfriend way. That’s what I wanted so badly. And I’m telling you, I feel like I reached the end of the internet when I was in the thick of it, that kind of information just wasn’t out there.

[00:16:12] Yeah, sure. Like you’ve got chat rooms that can scare you half to death. You’ve got again, it’s very individualized. So I won’t discredit people that have put their stories out there. That’s their reality. I just didn’t find the information that would have made me feel, in addition to prayer, in addition to having the best darn medical team anywhere, I didn’t have the information kind of that girlfriend, like, this is what nobody’s going to tell you. But what I want you to know, that’s going to make it easier for you. And I decided I needed to try to fill that gap.

[00:16:52] Adam Walker: So what, like, tell us about that. Like what’s the gap? What are some of the things you didn’t find that you’re now talking about?

[00:16:59] Rebecca Walden: Nobody told me it would take two years for me to regrow shoulder length hair. And again, I hope that listeners, you know, don’t think you’re focusing on appearance. Make no mistake with everything else, like, am I going to die from this? Like, is this terminal? Is my treatment curative or just life prolonging? You know, you go to the darkest place. You think of the worst case scenarios and all the heavy stuff. But it is a reckoning every time you look in the mirror, even if you’re not particularly into that, because I mean, you have sunken eyes. I read I don’t remember her name, but it’s such an apropos description. Someone that was diagnosed before me said, I feel like I look like Gollum from Lord of the Rings. And that is spot freaking on. So, you know, you asked like, what were the things that, that I wanted to talk about?

[00:17:55] Hair growth was one. Brain fog, you know, I’m a marketing executive. There is risk in admitting, for medical reasons, I am really having a hard time organizing my thoughts. People don’t talk about that. And that is so isolating. People also don’t talk about the mental health aspect. You know, there was, from many years before cancer, I would listen to women talk about anxiety and depression, and I would nod, and I would keep my mouth shut. They could say all day long they were on antidepressants. I wasn’t going to admit that for anything. But going through cancer, getting on Tamoxifen and anxiety and depression are some of the reported side effects, again, who am I to hide behind pride and ego and not put content out there to normalize.

[00:19:05] Hey, depression may creep in and this is this is what I want you to know. So, you know, those are some of the things that, that were just so heavy on my heart and I put it out there really with no expectation. It was cathartic for me. But I mean, yesterday alone and I won’t disclose anyone’s medical information.

[00:19:26] That’s not appropriate. But I am, it’s finding its audience and people are finding their way to me and some that I know through friends, some that I’ve met through Instagram and I’m getting pictures of how they’re doing and I’m, you know, praying for them by name and sending them encouraging videos and texts the night before their surgeries. If you, I mean, doing these things doesn’t pay the bills. But how we earn a living isn’t really what life is about. Like, if you are not using your God given gifts to help shoulder the burdens of other people, what are you even doing with your life?

[00:20:11] Adam Walker: That’s good. That’s good advice. And I love that you’re taking the time to write about these things that, you know, that matter to you and then obviously clearly matter to other people and that they’re finding. That’s so, so amazing. So then, so last question then. What final advice do you have for our listeners about how to navigate survivorship and how to find the kind of support, the kind of community that you found yourself?

[00:20:37] Rebecca Walden: Spend time soul searching. You need to be really honest with yourself. Don’t put a timetable on any steps you need to take. For some people, they’re done and they don’t want to have anything to do with any part of that. It’s too painful. And for them to move forward, they just have to leave it all in the past. For others, like me, there is something that is very healing and restorative and I just, I’m just a pay it forward person by nature.

[00:21:12] And if that’s you send me a, you know, DM I’ll connect you with people that I know. I meet incredible humans that are part of this community every day. And, you know, back to the knowing yourself and being honest from a financial resources standpoint, if you can afford to go to a retreat, there, there are events like that.

[00:21:38] I mean, that’s where the Internet can be used for good. And if you can’t afford retreats, there are… there are things like Casting for Recovery and others where it’s more accessible. It’s not a lottery. Where everything is paid for you. So just think about what are my circumstances? What would bless me? You know, something that, that I can’t do it because of scheduling, but just to show how vast the opportunities for healing and community are.

[00:22:10] There is, I think she does TV segments for one of the main networks. I can’t recall which, but there’s a woman by the name of Samantha Fox. I think her handle on Insta is SamanthaFoxTV, Breast Cancer Survivor. She’s having a retreat in a few weeks in like, Park City, and it is… You know, spa and wellness and meditation and yoga.

[00:22:34] Not everybody wants that. Not everyone can afford to do that. But if you can you imagine how cool that would be? If I didn’t have a conflict, I’d be there. And if you can’t, please don’t just go home and drift into survivorship. Just challenge yourself to reach out to somebody like me or maybe somebody that you know, and just say what’s out there?

[00:23:02] Because this sucks and I don’t have that regular cadence of medical appointments and I feel weird, but I don’t want to admit that I feel weird and I don’t want to stay in this particular head space. Help! And people will show up in ways that you just cannot imagine.

[00:23:22] Adam Walker: Yeah and I think, you know, my takeaway is that there are probably way more communities of support out there than we ever, like, I would have never imagined that there’s a one, even one dragon boat team of cancer, breast cancer survivors, much less an entire like community of dragon boat teams that you can travel to what, like, that’s amazing.

[00:23:42] And if that’s true for that, I think it’s got to also be true in so many areas of our lives and what we need to, you know, if you need that support, look for it and you can probably find some groups that will fit your needs and your own personality. So, Rebecca, man, what a great conversation. I love what you’re doing for the world through what you’re writing, what you’re sharing. Thank you for that. And thank you for joining us on the show today.

[00:24:07] Rebecca Walden: Thank you for having me. And if anybody would like to connect you can reach me @rebeccawaldenwrites on Instagram. On Facebook, my, my maiden name is a doozy, but it is Rebecca Sibulski Walden, writer.

[00:24:24] My blog is RebeccaCWalden.com. And nothing makes me happier than just connecting with this community and wherever you are, newly diagnosed, in active treatment, trying to figure out what next. Let’s have that conversation. We were put on this earth to help each other.

[00:24:49] Adam Walker: 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 at Susan G Komen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog, adamjwalker.com.