[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] Women with a very high risk of breast cancer due to genetic mutations, such as BRCA, may consider risk reducing bilateral mastectomies to lower their risk of breast cancer. While these prophylactic mastectomies do not completely protect a woman from breast cancer, they lower the risk in women At high risk by up to at least 90%.
[00:00:37] When today’s guest learned that she was a carrier of the BRCA one mutation at only the age of 31, she began preparing for her surgery and found both an escape and a sense of confidence through romance novels where women were embracing self-confidence, self-love, and their bodies reading romance novels carried her through her recovery.
[00:00:57] And this year she published her own romance novel, four Weekends and a Funeral with a Lead character. who has also just undergone a double mastectomy. Ellie Palmer is here today to share her story and how a genre of books helped not only bring her joy, but also gave her a language to help discuss her body and what she feared losing.
[00:01:19] Ellie, welcome to the show. Thank you for having me. I’m really excited to talk to you. This is such a, such an interesting and important perspective and, uh, I can’t wait to hear about it from you. So, but let, let’s start with you and your story first. Um, you were diagnosed with the brca, I think we said the BRCA one mutation.
[00:01:37] Uh, what led up to getting the genetic testing? And do you have a history
[00:01:43] Ellie Palmer: Yes. So my mom had breast cancer when I was about nine years old. Um that’s always been in my aware of. Um, at the time Um, it was the late nineties If there was an understanding of genetic mutations, it was pretty early and it was still pretty expensive and hard to get that testing done.
[00:02:06] And it wasn’t until my aunt was diagnosed at the age of 36 that our family, the adult women in my family, um, got that testing and we identified that it was the BRCA1 genetic mutation that ran through our family and seemed
to be related to the cancer that was happening with the women in my family in particular.
[00:02:27] Um, and but at the time I was 16 and so it still was something that we were aware that I needed to stay aware of, but it wasn’t something that I could really act out at the time, which is sort of this, like, kind of source of anxiety in the back of my head. Um, and then it wasn’t until I was 18 that I saw a specialist for the first time.
[00:02:49] And we created a plan as to how I would kind of take those preventative measures. Um, so I’ve been getting preventative, um, I’ve been getting, um, preventative testing since I was 26, um, MRIs every year, um, ultrasounds or mammograms every year. and it wasn’t until I was 31 that I went through the process of actually getting tested.
[00:03:14] I just had sort of proceeded as if I had it
[00:03:17] starting
[00:03:17] at 26.
[00:03:18] Adam Walker: Gotcha.
[00:03:18] Ellie Palmer: Um, and then at 31, I found out that I did in fact have the genetic mutation and immediately started the process. to getting a mastectomy, but um, it was actually 2020 when I tested positive. Like I tested, I had like scheduled the appointment and it was like April of 2020.
[00:03:36] And so it was, um, we kind of delayed the process a little bit more. Um, and I didn’t end up getting the surgery until in 2021.
[00:03:45] Adam Walker: So, so tell me a little bit about that, you know, that decision. So you sort of, I think, I assume you sort of already knew, A decision might be coming right in the back of your mind, but it’s confirmed at age 31.
[00:03:57] And you realize, Oh, I probably need a double steak meat. Was that recommended at the time or did you have to advocate for that?
[00:04:03] Ellie Palmer: It was recommended at the time. I think when I first saw a specialist at 18, it was a little bit more, you know, we’ll see what happens later on. Let’s just keep an eye on it. And there really wasn’t any pressure to get testing right away, just because at the time, I don’t know if that was the primary
recommendation, but by the time I was tested, um, at 31, it seemed like that was.
[00:04:28] That was the standard, um, just based on. The risk in my family, um, how aggressive the cancer was in my family, how early my aunt had gotten cancer, that everyone was on board for that. And, and, you know, and I had to go through my insurance company, which is of course a joy, but, uh, but it’s, but it was recommended.
[00:04:48] Adam Walker: Okay. And so, so look, you know, you’re, you were very young, uh, making this decision. You’re very young now, but you’re very young making this decision. Um, and you know, as a young woman, I mean, talk to me about the emotional weight of that. What was that like?
[00:05:01] Ellie Palmer: Um, the decision itself at the time didn’t, it, it was strange because it didn’t feel like I really had a decision to make.
[00:05:08] It was, this is what I’m being told I should do. Um, I had a, I had it, I think my son was about two at the time. So it seemed like if I want to be here for his life and like, Be around as long as I can. It seemed like it was a choice that I needed to make.
[00:05:23] Adam Walker: Right.
[00:05:23] Ellie Palmer: Um, and I think what ended up emotionally coming out of that was I was, of course, feeling all those feelings of sadness, grief, frustration, um, and of course, gratitude as well, but I really felt like I wasn’t allowed to feel anything aside from gratitude and that was, and I was feeling guilty for any time I would feel sad or angry that I had to face this decision.
[00:05:52] That didn’t really feel like a decision at the time. I was really judgmental of myself for feeling those feelings. And my mom, who had had a mastectomy when she, when I was 10, um, because she had had cancer, she was the person who probably would understand what I was going through the most. And she was someone I had a really hard time talking about it with for, for at least the very beginning of the process, because she was feeling a lot of guilt for passing this on to me.
[00:06:18] I was feeling a lot of guilt for feeling anything other than incredibly grateful that I had this information as I was preparing for the surgery. Um, and it wasn’t until, honestly, when I was recovering from the surgery that we were able to have some really good conversations about how we were both feeling
mixed feelings about this and how it wasn’t just this, um, this kind of very simple emotional, uh, process for us.
[00:06:46] Adam Walker: Gotcha. Wow. That is very complex. Um, and so, uh, let’s segue and let’s talk about romance novels. So, uh, so, uh, my understanding is that you found a lot of help in reading Romance novels and emotional, you know, support. Um, tell me like, what was that like? What got you into that? What were they able to provide for you?
[00:07:11] Ellie Palmer: Well, I’ve always been a big reader. Um, and at the time when I was preparing for my, uh, mastectomy, when I was kind of researching the process and meeting with doctors, getting second opinions, um, I just found that I was not enjoying reading any books. that I, that were going to end happily. I need, I needed to go into a book knowing that everything that was happening with these characters, which could be emotionally complex, it was going to be, it was going to be resolved at the end.
[00:07:41] I was going to be made whole on this emotional journey. Romance is the only genre that promises that. I mean mysteries, you know, you’re gonna find the killer at the end.
[00:07:49] Adam Walker: Yeah, but they might not be the one you want, right? Yeah, that’s right.
[00:07:52] Ellie Palmer: Yeah, but in a romance, you know at the end no matter what’s going on with these people emotionally They are going to find each other at the end and they are going to, it’s going to end in some way.
[00:08:05] And so,
[00:08:06] Adam Walker: yeah, it’s the happy ending.
[00:08:08] Ellie Palmer: It’s a happy ending. And at the time I really needed that. I needed that sense of optimism. I needed that escapism. Um, and as I was reading them, I also discovered that it’s one of the only genres that really centers women and their experience of being in their bodies.
[00:08:23] Um, and the way that they think about themselves physically. And it was a time when. I was feeling a lot of anxiety about how I was going to see my own body after this. There were so many unknowns and hearing these women talk about themselves and talk about how they wanted to be viewed as beautiful and sexual to them, to their own selves.
[00:08:47] It was just about their own self confidence. It validated those fears that I had that at the time I was being really judgmental about. I was like, only vain people care about things like this. You should only care about the prevention. You shouldn’t, you shouldn’t have any feelings about anything else. And seeing these women who were also viewed as, you know, strong, confident women with goals that were not just romantic.
[00:09:11] They have career goals. They have family things going on as well. Um, seeing them have these feelings that they’re grappling with, with self confidence and self acceptance, it validated those feelings I was having. And it gave me more of a language to talk about the things that I was afraid of.
[00:09:27] Adam Walker: That’s really beautiful.
[00:09:28] Like I, I, I never would have thought of it that way. Um, that’s really beautiful. I’m really, I’m really happy that you found that. So that’s, that sounds kind of amazing. Um, and, and I mean, sorry, and I’m distracted and, uh, you published, you published a romance novel, which is so exciting. Congratulations.
[00:09:47] That’s such a huge, I don’t know that people realize how big of an accomplishment it is to publish something It’s so hard to do. I really very much admire that you’ve done that. And so in that, uh, your lead character has undergone a double mastectomy. I assume, uh, that’s inspired by your own journey. And can you talk a little bit about that and why that was important to you?
[00:10:07] Ellie Palmer: Yeah. Cause when I was reading these books, I, I mean, there were so many characters that were experiencing So many things emotionally, physically, but I had, I had yet to run across a woman who had had a double mastectomy and, um, it, and just in media in general, I feel like it’s often viewed as the ending of the story.
[00:10:28] It’s the thing we’re heading towards, and it’s not a thing that really kicks off a story of joy or happiness or love. And so I, at the time when I was preparing for my mastectomy, I think it would have been really useful. To see someone who had had one in the rearview mirror, who was now embarking on a journey of love and joy and optimism.
[00:10:51] Um, and I, I think that would have been really helpful to me at the time. And so I, I was curious as to why there weren’t more books like that. And I thought, well, I’m a reader, I’m a writer. Let me, let me see if I can create a
story like this on my own. So that was part of that, that kind of journey of self acceptance for me was being able to you.
[00:11:10] Process some of these feelings through another character.
[00:11:13] Adam Walker: And, and, I mean, I, it sounds like it would be very cathartic to just sort of write Dialogue, write the emotion, sort of express that on the paper. ’cause you, you’ve been through it. Is that, is that kinda how it was for you?
[00:11:25] Ellie Palmer: Yeah, I mean, there were some conversations that were, or just like in, you know, internal thoughts that were based on some things that I had written in a journal at the time that I just thought were.
[00:11:34] just kind of like curious observations that were a little bit kind of funny sometimes I mean it’s it’s a huge change for our bodies and sometimes that can lead to like comedic moments or strange moments and and but I also had conversations between the characters where they were telling the main character things that Maybe I need to tell myself a little bit more and see that was also really helpful.
[00:11:57] Yeah. Yeah.
[00:11:59] Adam Walker: I mean, I looked you up on Amazon. You’ve got a bunch of, uh, of high star reviews there. So congrats. You seem to be doing really well. It’s very exciting.
[00:12:07] Ellie Palmer: Yeah. It’s been exciting to see people find the book and enjoy. Yeah.
[00:12:09] Adam Walker: Well, speaking of like, what’s the name of the book? I want just in case we can mention it at the end too, but let’s make sure we mentioned it now.
[00:12:14] What’s the name of the book?
[00:12:15] Ellie Palmer: Yeah, so the book is Four Weekends and a Funeral, um, and it features a, a, um, a post mastectomy woman who shows up to her ex boyfriend’s funeral only to discover that he never told anyone that he dumped her, um, and she has to go along with it for the sake of the family, and that would be totally fine if she wasn’t on it.
[00:12:33] Also falling for his uh, very off limits best friend So I took a lot of inspiration from some of my favorite 90s rom coms like while you were sleeping Four weddings and a funeral when harry met sally and kind of wrapped that all up together in this kind of zany plot
[00:12:50] Adam Walker: That’s such a good plot. I love that.
[00:12:52] Okay, that’s great. All right. So, all right, so so back to your story for a minute Um, so a lot of our listeners I wonder what it’s like in the months and years, you know, post treatment, um, what’s the process of self acceptance been like since your surgery and have you been able to find more self confidence or new self confidence with your, with your new body?
[00:13:10] Ellie Palmer: Yeah, I think the thing that I was, I was not prepared for was, um, the kind of feeling the alien ness. Where it, I, I experienced a lot of numbness for a long period of time. I’m still experiencing numbness. Um, and it’s something that I think I found really jarring at first. Um, just kind of having parts of your body that you can’t.
[00:13:37] feel that your brain can’t really access. There’s something that kind of like phantom limb of it all is very, was very strange for me at first. Um, and then I was, you know, my, my mom had also had a mastectomy and she promised, she said, you’ll get used to it. You’ll get used to it. And, and it’s true. I did like, it was, it took about, you know, a year.
[00:13:56] Of, of me kind of having those moments where I’d walk outside and I’d be confused that parts of my body were cold and parts of my body weren’t sensing cold. I live in Minnesota, so that’s a big sensation is wind. And that was a little strange, but, um, it’s, I’ve, I did adapt. And as far as my self confidence, um, I, I definitely kind of went on a journey with that where at first I felt.
[00:14:27] I wore a lot of turtlenecks. I wore a lot of high, high collar tops just because it was something that I wasn’t used to how I looked in my own clothes. I found that to be a little bit jarring. Just, I had gone through body changes. I had had a child. But it was something where it just I wasn’t used to the way I was supposed to look in my own clothes that I found so strange.
[00:14:48] But, um, I ended up kind of, you know, adapting to that as well and learning to accept my new body and starting to love my new body in the way that it looked. I got a, um, A, uh, um, a, a tattoo, um, of flowers over my scars and where I did not do a nipple sparing, so where my nipples used to be as well. And I found that that was really affirming and kind of helped me take back the way that my, the way that my breasts looked now.
[00:15:20] I wasn’t going to have my old breasts back. And so I liked the idea of making something new and beautiful and different that I never would have had before.
[00:15:29] Adam Walker: Oh, that’s beautiful. That’s fantastic. So, you know, as you move forward in your health journey, you know, you’re continually aware of the risk. because you have the bro what that means for your mean for him in the futu those feelings?
[00:15:47] Ellie Palmer: I do think about that. I do feel some guilt about that and concern and I worry about how whether he has it he’ll respond to it. Um, and it’s not only associated with breast cancer it’s associated with, um, Other cancers as well that, that are, are more, they’re more prevalent in men and breast cancer, men can get breast cancer as well. So that’s something that concerns me.
[00:16:15] But at this point, I, I just try and, and I just try and be an advocate for breast cancer research, breast cancer awareness, BRCA, BRCA research. So that by the time that he is at the age where he can do something, he has more options. Um, I mean, I had so many more options than my mom did, than even my aunt did, who had, was diagnosed, um, about 15 years before I was able to do anything about this.
[00:16:41] And it’s, it’s just been really incredible to see the changes in, I mean, my surgical options are completely different than what my mom had. And so it’s, it’s something that I try and think about it optimistically that by the time my son is the age when he would have to, you know, make choices, take action.
[00:17:01] If I am doing my part to make sure that he is having as many options as possible.
[00:17:06] Adam Walker: I love that. That’s such a great perspective. I mean in doing this interview is a part of that So I really I really appreciate what you’re contributing. So, um ellie you are An amazing positive voice in the space. I think even just a voice for for uh, I don’t know positivity in general Um, do you have any final advice for our listeners on how to find acceptance and peace in a situation?
[00:17:28] That’s full of difficult physical and emotional challenge.
[00:17:33] Ellie Palmer: I am someone who’s always looking for the kind of little bits of optimism of joy, those like tiny moments where I can just like, okay, well, I’m excited about this one thing. I mean, for me, when I was going
in to get my mastectomy, it was like, I have downloaded so many audio books, and I’m gonna have so much time to listen to them.
[00:17:54] And that was the thing I kept thinking about. Um, but I think there’s also, um, it’s so important to. Allow yourself to feel all of the spectrum of feelings you’re feeling and not judge those feelings. Um, I think I spent, I wasted a lot of time, um, judging myself for feeling any feelings other than those moments of optimism opens moments of gratitude.
[00:18:18] Um, and I think that the more that you’re able to allow yourself to feel your feelings, the faster you’ll be able to actually process them, which I’ve learned is incredibly helpful is processing your emotions as they happen. Um, but also, um, It creates a sense of community with other people in my family who have experienced this.
[00:18:39] When we’ve been able to talk about kind of the uglier side of the things we’ve felt about it, that’s when I’ve really connected with my other family members who have gone through this. I have a cousin that also has the mutation. And we definitely had that first phone call where we were like, well, we’re just so grateful that we can do things.
[00:18:55] And isn’t this so good? And aren’t we so happy? And then, you know, a couple of conversations later, we were like, gosh, the recovery, I have to do this. And I’m worried about picking up my kids and this, you know, I’m scared of what’s going to happen and how I’m going to change and how things are going to change in my life and being able to discuss that openly.
[00:19:15] With other people in my family has really connected us in a way. I didn’t expect.
[00:19:20] Adam Walker: Yeah. Wow. That’s great I mean, it’s so good that you have family that you can talk to about this and and I love your perspective on just You know being so optimistic. I’m looking for the positive. It’s a it’s a great gift.
[00:19:33] Um, and I love uh, Again that you’ve they’ve written a book Uh, let’s just share one more time for our listeners the name of your book just in case they want to look it up here And I would recommend it
[00:19:41] Ellie Palmer: Yeah, so the book is Four Weekends and a Funeral by Ellie Palmer, and it’s available wherever books are sold.
[00:19:46] Adam Walker: All right. Well, Ellie, thank you so much for joining us on the show today.
[00:19:50] Ellie Palmer: Thank you for having me.
[00:19:56] 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 at AJ Walker or on my blog adamjwalker.
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