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April Stearns - Telling Your Breast Cancer Story

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Kandungan disediakan oleh Kathleen Moss, LLC and Kathleen Moss. Semua kandungan podcast termasuk episod, grafik dan perihalan podcast dimuat naik dan disediakan terus oleh Kathleen Moss, LLC and Kathleen Moss atau rakan kongsi platform podcast mereka. Jika anda percaya seseorang menggunakan karya berhak cipta anda tanpa kebenaran anda, anda boleh mengikuti proses yang digariskan di sini https://ms.player.fm/legal.

The work that April does at Wildfire Magazine has been one of my biggest comforts in breast cancer recovery, because the stories told by her writers provide comfort and solidarity. I see April as an activist on many levels but mostly for the themes that she chooses for her magazine. Themes like "Body: A Changing Landscape" and "Fertility" and "Identity and Aftermath". She is a wonderful curator of story. I'm so thrilled to be sharing a little more of hers on the podcast.

Wildfire Magazine is at: www.wildfirecommunity.org

April's other podcast interviews are here:

https://podcasts.apple.com/us/podcast/107-april-stearns-breast-cancer-survivor-and-founder/id1451816690?i=1000567583964

https://podcasts.apple.com/us/podcast/well-this-sucks/id1258071561

Transcript:

K:

Today's guest is April Stearns, founder and editor of Wildfire Magazine. April has been a hero of mine for over a year now, and she was one of the first people in the breast cancer community that I discovered who really brought a lot of solace and healing in my own life when I was feeling super alone and isolated, and just not sure if I could access people that would relate to my story. So, April has a tradition of inviting breast cancer survivors to tell their stories in short essay form and she publishes them in a magazine that's a print and a digital magazine. It's called Wildfire Magazine. And she also has a podcast where the writers of those essays are reading their essays aloud on The Burn, which is the name of her podcast. April has 12 years, no evidence of disease at this point. And she's been in the breast cancer community from the beginning. So she's a veteran and super connected. She's done a number of other podcast interviews and I will mention them down in the show notes for you to look at and listen to because she has an amazing story. And today I want to ask her some questions that haven't been covered by other interviews. And I'm hoping to dig a little bit deeper. So I'll just tell you at the offset that April's diagnosis was hormone receptor negative and HER2 positive and she was stage three and she did take Herceptin, which is that HER2 growth factor receptor drug for 13 months, right, April?

A:

I did.

K:

The first thing that I want to ask you about is what happened less than a year after you were done with treatment. Um, you had a family member that was also diagnosed with cancer and it sounds like that changed your story quite a bit and kind of had a big decision to make. Can you tell us, start out by telling us a little bit about that story?

A: Yeah, absolutely. So my dad was diagnosed with cancer, and for my whole family, that was a real big surprise. It was obviously surprising that I was diagnosed when I was, but even though my dad was—I think he was 61 when he was diagnosed. So even though he was more maybe in the age that we come to think of people being diagnosed with cancer, our family didn't have a history of cancer in that way. And so to first have me be diagnosed and then shortly thereafter him was a huge shock to our family. I think that the, the big thing was that once his diagnosis came, I knew immediately that I was going to be his caregiver. I didn't have any question about that, number one, because of my proximity to him compared to my brothers. I was just much closer to him. My mom had already passed away. It was obvious he was going to need care. And I had just been through it. You know, it felt like an opportunity to maybe give back to him some of the stuff that I had learned through my own experience. I was like a cancer baby. I had no idea what I didn't know yet, but I felt like I knew a lot and could help him with things like chemo side effects. The insurance stuff, you know, logistics around cooking, cleaning, just getting him where he needed to be and comfortable. And it felt really, really good. It suddenly felt like there was a reason why I had been diagnosed and I had a purpose to fulfill. And that was, I think, really helpful to my mental state at that time when I was just wondering, okay, what now?

K:

I've heard you tell part of this story and it sounded like you had a big crossroads at that point when you make the decision to care for your dad.

A: Yeah, I think I was really grappling with the “should I stay in cancer land or not” question. And prior to my diagnosis, you know, I didn't have any connection to cancer and I had a completely different career. I was a conference producer. So when I got to be his caregiver and I got to give back in that way and come face to face with how much I didn't know in my own survivorship and how much support I still needed, even though I was, you know, NED and supposedly released to the wild by my care team, being able to care for him in that way, like I said, it gave me so much purpose. It made me feel like, okay, I really do want to stay in cancer land and try to help others. It feels good to me. And, um, I wanted to do that anyway I could. I remember my therapist really kind of feeling like, Hmm, is this the right choice for you? Are you sure? And I just felt like I have never been more sure of anything. Like I really need to find a way to, to try to give back. K:

What was it like quitting your job at that point?

A: You know, it ended up being easy. Um, my employer ended up not being as supportive the second time around when my dad's diagnosis came and really felt like, you know, we already did cancer with you. We already supported you through these 13 months, you know, from diagnosis to end of active treatment. He really wanted me to get back to quote unquote “normal.” And I also felt really guilty for the fact that I was at diminished capacity. I didn't know that going in. I don't think anyone really knows the exhaustion and, you know, chemo brain and all of that stuff that kind of comes with going through treatment. And so I was that person, um, in the chemo lounge on my computer, you know, trying so hard to meet deadlines and just keep working, working, working, working at nights, like all of it. And then when my dad's diagnosis came, I actually didn't ask to quit right away. I asked to go part time and that's when, you know, he threw up those, these big roadblocks for me and said, "you know, I don't think we can support you doing that. Isn't there anyone else?" And I was really turned off by that. It was offensive to me that he would ask that I had been working there for years and years. And so I just remember I worked from home. He was, you know, many States away and he kept me on the phone for over an hour. I was crying, I was pleading my case. And I remember my husband just coming and quietly opening my office door and mouthing to me, just hang up. You don't have to do this, just hang up. And so that's what I ended up doing. And, um, it ended up being the best thing. It's funny. I just recently in the last couple of years discovered a message from him on LinkedIn that I didn't even know was there from a year later asking me to come back and try it again. I'm actually kind of glad I didn't see it. Cause I probably. Would have, you know, I was a year into, you know, grieving my dad's passing, trying to figure out how to move forward. And I might've gone back at that point. And so I don't know, the universe saved me from that. And I didn't even know it was—it was waiting there. Something else was calling to me. And so I did something else instead.

K:

It sounds like your dad passed away pretty quickly. A: He did. He, it's interesting. He was, um, I think about five and a half months from diagnosis to passing. He had a few symptoms prior. So I would say, you know, he started being sick maybe in January of that year. That was 2014. And then he passed in September and was kind of eerie when I looked back and counted up how many days I literally got from him from diagnosis to his passing. And I literally spent a hundred days with him in that time. He wanted his weekends cancer free. So I didn't, I didn't go to his house on the weekends. He saved those for hiking and riding his Harley motorcycle and things like that. But Monday through Friday, eight to five, I was there with him and we got a hundred days and I think it was a, it was a real gift. I'm really glad I got to do that with him.

K:

Yeah. Yeah. I can relate. I had the same choice with my mom and it was absolutely no, no contest. I was, I was there for her as much as I needed (she needed) and I'm so glad that I had that opportunity. So while you were caring for your dad, what were your thoughts about future employment or vocation? Were you already dreaming up the magazine or did that come later?

A: You know, I don't think I really had the mental space in that time that I was caring for him, and my story was complicated a little bit by the fact that my mom, as I said, had passed away and she died seven years before my dad and my dad had not moved her things out or done any kind of work after she died to kind of settle that part of, of our childhood home. And so after my dad passed, I had a real big job on my hands to kind of settle the estate, clean out the house. It was a big house and my parents had lived there for the 31 years that they were married. And so I think I just dove into that as a way of kind of dealing with my grief. I just needed to keep busy. And so it wasn't until the, it was about 18 months, I would say, until I was able to sell his house and have everything kind of buttoned up and put away. And it was in the last six months of that, that I think I started to really wonder what was next. And coincidentally, I ended up enrolling in a writing program, um, an expressive writing program in my town. It was an in-person thing, and I started going to it to deal with the grief of my dad passing, and also kind of coming face to face with my own survivorship and the survivor's guilt that I had around it, and the pain I was feeling that I didn't know was specific to not knowing anyone else diagnosed young. I didn't have any connection to the younger breast cancer community at that point. I think they were starting to form Facebook groups and maybe on Instagram, but social media was different, you know, 12 years ago, and I wasn't hooked into that. Perhaps I could have tried searching on something like Craigslist, but I just, it wasn't occurring to me that there might be a whole community out there because all through my experience of treatment, I saw no one else in my doctor's office or in the chemo lounge who was younger. So I think on some level, I literally thought I was the only one. And it was so painful to have questions around, you know, career, fertility, sex and intimacy, like all this stuff that was cropping up from like medical menopause and really feel like I had no one my age to turn to. I ended up in this writing class. Most of the other people in there were older women, like retirees who were now like wanting to write their memoirs. But there was one other young person I found out later she was about eight years younger than me. And she was dealing with breast cancer diagnosis. Hers was actually a recurrence, a metastatic recurrence. She had been originally diagnosed one year before me, also stage three. And then we both landed in this writing workshop. And it was so serendipitous, you know, I was going through this like grief and what next and I need community and there she was—we just became friends right away and it was through discussion with her that I realized: Number one, there's others out there. There has to be, if I just found one, you know, in my town. And number two, we could not stop comparing notes, texting questions. We were talking constantly. And so that was kind of where the magazine started to develop because I just thought she is a wealth of information to me. I could see that I was to her. And then I just pictured that, you know, blowing up across and I knew it wasn't going to be a book because I didn't have the answers. I didn't have anything to share. I just wanted to make a place where we could bring that collective information and help others feel less alone. And so that's kind of where it started to percolate. And also the fact that I have a journalism background and have been a writer and used writing as that healing tool. That’s also kind of why the magazine was the resource I wanted to create versus, you know, other resources that others have created.

K: It's such a beautiful piece of art like I'll show it for those that are watching on YouTube I'll show some of the covers in a minute, but I wanted to ask: It sounds like, just hearing your story, it sounds like your dad's vocation of being a firefighter was a big thing part of the name, at least, of Wildfire Magazine and, uh, the imagery that you kind of present at the beginning of each podcast episode is that the cycle of nature and the tendency for a forest to catch fire, um, naturally can be a healing, even though it's a devastating process. Um, how did that, can you tell the story of how that kind of, happened and, and how your dad's spirit is, is alive maybe in the work that you're doing now?

A: Yeah, absolutely. I love talking about this. Um, So I grew up with my dad being a volunteer fire, um, fighter in our area. I grew up in the Santa Cruz Mountains. Which was an area that was kind of unincorporated. And so in order to have fire protection, it was a volunteer led company. And it was something that my dad got involved with when he and my mom first bought their property up there, I think in 1975, maybe. And really soon after that, he became the chief of the volunteers. I think a little bit by default, cause you know, there wasn't a lot of hands on deck and he was passionate and he kind of grew with the role and learned it. So by day he was working at IBM down in Silicon Valley and by night and weekend, he was a volunteer fire fighter. And so I grew up in this culture of volunteerism and this culture of fire and there was a couple of big fire, um, you know, forest fires, wildfires as I was growing up. And so I saw the devastation. I saw how the community came together. And then I saw that process of regrowth afterward. And most recently in 2020, we had another forest fire here in the Santa Cruz area and so I'm constantly reminded of it again Just yesterday, in fact, my daughter and I were driving through what they call the burn scar, you know, which is like where the path of the fire is, and we live in an area where there's a diversity of trees, but the primary tree here is the redwood—the California redwood. And I learned as a young person, and now I'm seeing it, you know, literally happening that the redwoods are very resilient to fire and in fact need fire to unlock their seeds. And so driving through the burn scar, you can see all these brand new baby redwoods sprouting up and also the redwoods themselves—the mature ones—looked like they were devastated are completely fuzzed out with all this new growth that feels like they're going maybe through a new puberty which feels very like I can relate to that as you know in medical menopause, And so growing up in this culture of fire I just knew that there was two sides to that coin, you know, something very devastating happens, maybe loss of homes, loss of life potentially, what it can do for the forest can be really reinvigorating and can clear out all that brush and just make way for new life. And so after my dad passed away and I was starting to think about doing this magazine. I was really coming face to face with two sides of that coin. You know, he had passed and I was still living and I was getting clarity on what mattered to me and the life that I wanted to live and how I wanted to get back. And it felt like that forest floor, you know, I was both sad and seeing myself reemerge as something new with space to kind of see that grow. And so that's the message of the magazine I wanted to give is this honoring of the destruction, the trauma, the pain. Asking that question, you know, what, what comes next after that? And what will you, what will you create? What will you hone in on? I think.

I guess I want to say to it's a little bit different than the silver lining message. I think we get in cancer. I've been really resistant to that. Um, it feels a little like toxic positivity, which to me doesn't mean that we don't need positive images. We just also need the real and we need the honesty and the space to be honest. And I think that's also what that kind of two sides of the of the forest fire also can, or it brings to mind for me as part of that metaphor.

K: Yeah. I love that the magazine is a tribute to your dad in that way too.

A: Me too. I'm, I'm honored to keep him alive in as many ways as I can. And he taught me so much about, you know, giving back and being part of community and taking leadership roles where possible. And, um, yeah, I, I know you'd be really proud of it and proud of me.

K: You talked a little bit about the need to compare notes, um, being in the younger generation. So Wildfire is featuring writers that have been diagnosed prior to age 50, um, even if they are currently over age 50. And I made it just under the line, but I do identify with that generation that you're talking about who needs to not sweep things under the rug, not to just kind of go about their own lives as if cancer didn't happen. And, so I wanted to ask you a personal question about your journey that, um, is particularly of interest to me because I have found very few women to talk to in my recovery process who chose to be asymmetrical or to have, um, a single breast to go forward in life as a single breasted woman. Um, and so I really value your insight and your experience of 12 years being single breasted. I know I've heard you say in other interviews that you, there are elements to this that you did not expect and you didn't plan for and didn't even factor in. Uh, but I do want to hear kind of what your decision making process was. How did you know it was even an option? And how did you come to this as a way to go forward permanently?

A: Yeah, I, so it's interesting, you know, when I'm, um, doing writing workshops with people, I am always bringing this idea of, you know, what is your unique story? And what was the lens through which you saw your cancer experience? Versus, you know, leaning on the diagnosis details or the treatment course. And so the example that I use in my workshops is the fact that everything that came after my diagnosis was through this idea/lens of how to get back to parenting my daughter as quickly as possible. So my story starts with a lump found one night while breastfeeding my daughter. I had to wean very quickly, almost overnight. I was in chemo within two weeks of my diagnosis. Like things moved incredibly fast partially because of the pathology, you know, the HER2, it was growing very fast. It was already in my lymph nodes at that point. Um, and the tumor was already seven centimeters also. And so I had a course of treatment that had me having chemo first. Some people have a mastectomy first. I had chemo first as a way of seeing, you know, if the chemo would even be effective on it was a good way for us to test, but also to shrink it so that I might have surgery choices. But for me, you know, living for six months, seven months in chemo with that tumor in my breast where I could feel it every day made me feel pretty certain that right off the bat I knew I wanted to have a mastectomy. It just felt like it was so big, so aggressive. It just for me personally didn't feel like a lumpectomy was going to be the right choice. Had it stayed as large, also, there wouldn't have been much breast material to work with. Um, you know, if they’d have had to cut around that, I got lucky and had a complete pathological response to my chemo, which was lucky. I don't know why or how, you know, sometimes there's just stories like that in the cancer space. And I got to be one of those. Um, but even still, I decided to have a mastectomy. And the reason I decided to have a single mastectomy was kind of twofold. Number one, I wanted to preserve another or a breast in case I might breastfeed again, and I had hopes of having another child and number two, I wanted to preserve sensation. And that was something that I kind of came to over those six months as I kind of learned more about, I guess, my body and thinking about sex and intimacy after mastectomy. That wasn't the main thing, but it was there kind of in the back of my mind. And then in terms of my decision not to reconstruct, um, with breast mount surgery, but rather to do aesthetic flat closure, that was purely: “How fast can I get back to my child? How can I minimize surgeries?” And so somewhere in that, I saw a poster that was a beautiful image of a woman who was one-breasted. She was flat on one side and had a breast on the other. She had her arms outstretched. She, I think was standing on top of a mountain. Like she, it looked like she was a tree herself. It was such a powerful image. And my husband and I both saw it in our local cancer center. And it was just like, Oh, I want that. Like, whatever that is, I'll do that. Um, and so then when I went and met with my surgeon and, and said that that's what I wanted, he just said, okay. He didn't ask my husband if it was okay with him—you know, some of the stories I've heard since, of people having to fight for flat closure. I had none of that. He just said, okay, no problem. And I came out of surgery completely flat, no skin sparing or anything against my wishes. And, um, and, I have no regrets about it. I did wear a prosthetic breast form for about five years and it was really big. As you mentioned, I'm double D on one side now and flat on the other side. So I had this, um, they called it an equalizer and I think it was about a pound and a half, two pounds. And I stuffed my bra with it every single day, on hot days, even camping. Um, and I didn't know I was going to do that. I thought actually I didn't need it. And then it seemed that my daughter needed something to help her with that transition to cancer treatment and after cancer. She by then was a little bit older, you know, talking and it turned out she thought I still had cancer because my breast hadn't grown back. so I felt like I needed something to kind of bridge that for her. She loved my breast form so much. She used to carry it around. She named it pork. No idea. Why? Um, but she would like slap it and pat it and sometimes I couldn't find it and she's like, Oh, it's cooking. Like, I don't know. It became this whole other entity in our relationship, but it really, I think, helped both of us. And I ended up developing a dependency on it. And then after five years of faithful service, it kind of exploded one day in my breast, or in my bra rather. And I tried to tape it together with duct tape. I did everything I could to preserve that thing. Um, and finally it was gone and I had to throw it out and go half flat while I waited to get another prescription for another breast form. And in that time I realized I was okay with being out in the world half flat and I kind of liked my body better and it was a really interesting thing to realize I felt sexier with one breast than I ever had with two and I think I was just ready by that point and so now it's been six, seven years that I've been living half flat. And occasionally I'll wonder, you know, how I'm coming across in the world. And if people are noticing, but number one, I don't think I really care that much anymore. Number two, if I do care, I kind of like that my body is, you know, advocating for what, what a breast cancer experience can look like and leave, you know, a body looking like. And number three, I actually don't think people really notice that much. I think we think they're noticing things and they probably aren't. So I'm I'm fine with it. I know for some people, my body represents a worst case scenario, you know, having such a large breast and then the flat side. But, um, I think the cool thing is there's so many different surgery types and different people and we can find the right one for us. And I'm just really glad there's options.

K: Yeah, I am so amazed that you had that photo up in your cancer center. That is so amazing to me because you just don't see that kind of imagery presented very often in the breast cancer community at large. So it just, it makes me so happy to hear that that was there, and that you responded, yes please,

A:

Right? I know. Well, you know, what was also really interesting is, um, so even though we didn't have a family history of cancer, my grandmother did have metastatic breast cancer when I was young. It was after I had my flat closure surgery that I realized that she had a flat chest. But it was not something our family talked about, that was not part of, I think, her generation to be so open, you know, about either cancer or bodies and things like that. But it was funny, I realized, when I put the pieces together after the fact that her shirt fell the way my shirt fell. I remember kind of getting a little glimpse, you know, maybe inside her shirt when she would hug me or something and things looked a little different and suddenly I could piece together what I was seeing. I remember, um, kind of what it felt like to hug her too. And I didn't know as a young person that it was very different, but it was, you know, it was stored somewhere. And so I had that kind of recognition after my own. And that also kind of felt like a nice connection to her in that way.

K: Yeah. I bet it's somehow, sub-consciously affects your confidence level too, to have had an elder in your family, someone that you trusted and valued that didn't have any shame about going around one breasted. She had, obviously she wasn't using a prosthetic—at least part of the time.

A: I mean, I wish that, you know, knowing what I know now, I've got a million questions for her. I don't know, you know, what, how she made her decisions or anything like that, or if she had a breast form, but it's also influenced me to be more open. My daughter knows obviously everything, but it's kind of, I think, why I'm comfortable being out in the world when breasted too, because maybe someone will have that recognition at some point, you know, when they need it too.

K: Yes, yeah, I definitely have those moments myself, like when I go to the gym, that's when my clothes are the tightest and I am always somewhat self conscious. I have a much smaller Goldilocks breast now on my right side instead of a double D like I had before. Um, so, much less self conscious, but I go back and forth between pride and loving my body just for how it is and being kind of an ambassador of truth: “This is breast cancer and it's okay. I'm not, you know, I’m not self loathing after breast cancer.” And then, you know, that kind of awkwardness, just like, am I appearing to be attention seeking here? Or, you know, do you have those moments? Like, do you ever have those doubts or feelings?

A: You know, it's interesting because my relationship with my body has gone so many different directions since, you know, being young. And I remember dressing for cleavage and I remember, you know, that I liked how that looked and I liked that attention. I haven't felt that same feeling since being, you know, Asymmetrical, but I do have a swimsuit that has a little, like, cutout in the front, kind of where cleavage would be, and it's my most, like, obvious, you know, that I'm one breasted, I feel like and I feel really sexy when I wear it. Maybe that attention seeking still in there, you know?

K: Mm hmm. Yeah, I'm just starting to get to where I can admit that I like to wear asymmetric clothing because it accentuates my asymmetry. Like I would have never even thought to admit that before, but yeah, it's true. It's kind of an adventure learning about your new body.

A: I know, and I really appreciate that, you know, we're starting to see bras and different things that are designed for asymmetry that don't necessarily—it's, it's hard to like describe, but it's almost like it accentuates it or it celebrates that this is the difference in the body instead of what I used to do which was just take the padding out of one side and it was like, okay, it's obviously a bra for two breasts, but it works ok, versus this is a bra that's specifically made for someone like me. And that feels really good to celebrate, you know, it's not just a body that's working. It's great. It's beautiful. Just that way.

K: Yeah, I felt so honored when, I think it was Eno Eco is the name of the brand that just sent me a one breasted bathing suit top/bra and I didn't get it until It arrived and I saw it in physical form and I just felt so honored honored, like, Oh, yeah, this is for me. And I matter too. And my body is a part of the collective of acceptable bodies in the world. And they made this for me. So yeah, there's something really affirming. And, and the most strong urge for me is, has been just to be honest, like the first time I took that big prosthetic out of my bra and went out in public, I felt so much more myself and authentic and I wanted to keep being that way. So that's been such an amazing process and to be able to live in a time when it's, it's safe to try that out is, is really a blessing.

A: I think so, too. It's interesting what you said about feeling more yourself, because I had that experience, but kind of in a reverse kind of way, with, um—so sex and intimacy have been a big part of my survivorship challenges, I guess, you know, things I've needed to overcome and I realized at some point that the fact that I was wearing my breast form out in the world meant I was kind of passing as having like a normal body, you know, “normal” body out in the world and then in my home in my bedroom, I would feel kind of different, other, strange... and I wanted to flip the script on that. I didn't want to feel way at home, I wanted to feel either… I don't know that I wanted to feel abnormal out in the world, but I at least wanted to feel normal at home and go and, you know, removing that breast form really helped me to do that.

K: Yeah, it sounds like it was kind of a surprising, fortunate happenstance that you, your breast form exploded and you couldn't get another one right away. And you learned this thing about yourself. And now it's been like, what, seven years that you've been going without?

A: It's so funny. I mean, I think that there's probably a lot of examples of that, that we can find acceptance when we're kind of pushed out of our comfort zone a little bit and then realize it's not even just acceptance. It's, oh, this is—this is better than, than it was before. I'm not just making do.

K: Yeah. So you talked earlier about the idea of cancer and silver linings. And I wanted to ask you, because I know you've heard a lot of people tell their—the gifts that they've gotten from cancer as well as the things that make them really angry. And I know you're not shy about publishing the angry pieces and I really appreciate that. So I've been wanting to ask you those two things about your story. Like what is the best gift and then what is the thing that makes you the most frustrated or angry, yourself?

A: Yeah. I really like this question. I do think there's both sides to the whole thing. I think for me, kind of the best thing that has come out of my diagnosis is the entrepreneurship and the opportunity to create a resource that I needed. I didn't know I had it in me, you know, to found a business, to lead a team of others who've also been diagnosed with breast cancer and to form a community around something. It's funny because in my previous life as a conference producer, the place I was working when my dad was diagnosed, I was really good at that job too. And I had a coworker, we were the two who worked mostly together and she was nudging me for a couple of years. Like we could do this, like we could go out on our own and do this. And I remember at the time feeling like, I don't want that risk. Like, I, I don't know. That just sounds like a lot of sleepless nights, you know, making sure that the numbers meet and blah, blah, blah. And then fast forward and all of a sudden here I am being like, I'm ready to take on that risk. It feels worth it to me, it feels important to me. I think I can do it. And I knew so little if, in fact, if someone had told me all the work that went into publishing a magazine in the cost, I probably would have been terrified and not done it. So I'm thank you, whoever didn't tell me that, like I needed to not know. I just had to go blindly into it. I think that that's been such a gift to learn that about myself, that I had it in me to, to do this. I get so much joy out of the work and the community. And, um, getting to teach people how to use expressive writing as a healing tool is such an honor. And so, yeah, I don't know. Maybe I would have had another illness at some point and somehow this would have come out. Maybe it wasn't meant to, but I'm really grateful for the opportunity to learn new things about myself and have this, this be a part of my life.

And then in terms of like the, the bad side, I think it's kind of connected because I have now lost so many people over the years. I founded the magazine and the writing community in end of 2015 launched the first magazine, 2016. In those years, I recently counted up, I believe I've lost close to 65 people to metastatic breast cancer. And I feel every single one, you know, because these are whole people that are now missing from our, our world, our universe, and the solace that I get is that if they came through wildfire, then I have their words. You know, I, either I've published a story of theirs in the magazine, or I've heard them read their story and share their story in the, in the workshops and love. That I've had the privilege of amplifying their voice, amplifying their story, maybe helping them find a story they didn't know they had that legacy lives on. Those echoes just continue to live. And so I hate, hate, hate, hate that people are still dying of this disease. And I I love science. I love that science has progressed and I also am angry that it hasn't progressed further and that we're still dealing with this, and so, yeah, it's, it's both those things.

K: Thank you. I really see you as an activist, um, in your work and I know it's kind of behind the scenes, but you are choosing to publish themed, you know, magazine themes, every other month that are very daring, like on metastatic breast cancer. That is very daring in my view. Personally, when I started listening to The Burn, I couldn't listen to the episodes about metastatic breast cancer because I was so fearful of recurrence and I didn't want to add to my anxiety. But then when my mom was diagnosed with metastatic breast cancer, I clung to those episodes and they've been the most precious to me. And I realized that's not going to be the case for every breast cancer survivor. They, people can't always handle hearing about the worst case scenario. Um, and some people don't benefit from that, but I so appreciate your willingness to go there in spite of the pain and the awkwardness, that people associate with hearing these very, very sad and tragic stories. There's also the bright side of seeing that people are resilient enough to deal with the sadness and the lack of control over their life and their death. I just, I really want to thank you for your being bold and courageous and publishing those stories, even though they really scare people like me early on. And then also other topics like fertility that just need more airtime. Um, like I know yourself 12 years ago, nobody mentioned to you that you could maybe save some eggs and now that's more normative, but probably not as normative as it should be still.

A: Yeah. Yeah. Yeah. I just want to circle back for a second on the metastatic stories. You know, I think that one of the things that really helped me, in my own fear around, you know, developing metastatic disease. And, you know, I still, I don't consider myself by any chance, um, scott-free or anything, even though I've been living 12 years NED, I just know that we don't know, you know, what will happen until we pass away from something else perhaps. But I found that it was almost, it was almost helping to just read and face something that was scary to me because partially because, you know, the, my breast cancer bestie who I met in that writing group so long ago, um, when I met her, she had metastatic disease, she is still here and living. She has been living with us for 10 years now. And I found that she's so much more than her diagnosis, so much more than metastatic breast cancer. And so part of my inspiration for publishing metastatic stories is also to educate the rest of the breast cancer community that, you know, life isn't over upon the day of a diagnosis. There is so much living that happens between the lines. And I love drawing that out, you know, and helping people to both experience that realization themselves, you know, as a person living with metastatic disease or just living with, you know, in the aftermath of a cancer diagnosis to realize, “Oh, I'm still here. I'm still living. I still, you know, I'm learning things about myself and changing.” and then I do hear from people with metastatic disease who read the metastatic stories and get so much hope out of them. And I think one of the things the world doesn't know about cancer stories is that they are so hopeful even when, you know, quote unquote, it's the, the worst case scenario or something so scary. I think our media, our society tends to not want to face those stories, but in that they're not seeing how much living is really happening in there and how beautiful. You know, even my own dad and his metastatic, diagnosis. He, he did so much living in those six months and learned so much about himself. He really, really embraced this idea of legacy and passed things down to me and my brothers. And I was so glad that he didn't give up the day, you know, the day of that diagnosis.

K: Yeah. Yeah. That's a story that I wanna tell on the podcast so badly. I wanna tell the diversity of situations in which someone can be living with metastatic breast cancer. Cause I think we're so shy when we meet someone with Mets, like you just don't want to ask about all the ins and outs, but there are a few people out there that are willing to tell you and it takes away so much of the fear and the stories that you've published have taken away the fear for so many, I think. So thank you for that.

A:

Yeah. Absolutely, and to your point too, you know, I think there's so much to survivorship, know, whether you're early stage or stage four diagnosed, there’s so much nuance in there that we really have to cut and dice and slice, you know, all these different things. And one of my favorite questions to ask people as a counter to that classic, like, “You're okay now, though, right? Like, you look so good. You're great now, right?” Instead, I feel like we need to be asking, “What is your biggest challenge in survivorship? You know, what is survivorship like for you?”

Because, again, it goes back to that idea of like, What is my life like, and what is that lens through which I'm looking at my whole experience, you know, and is it a parenting with cancer experience? Is it parenting with metastatic cancer or maybe something else, you know, that's a working, um, career lens, or maybe it's a financial lens, or maybe it's, you know, very body focused. Like there's so many different variations on this experience. So, yeah, I love having different themes for the magazine to really dig into all those different types of stories and all around the world too, you know, it's very different if you're diagnosed in an area that has a lot more stigma maybe around the experience and maybe you don't have as much community versus someone, um, you know, here in California, Santa Cruz, I'm, I feel very open and free with my cancer story.

K: Yeah, so you touched on some of the themes of Welfare Magazine. I have, for those watching on YouTube, I have, um, the latest issue. This is the body issue, which comes out every year, annually. Um, so six additions every year, and body is one that you stick with annually and the others, a lot of them change quite a bit. You also have a metastatic one every year, is that right?

A: I do. Those are the two issues that I do every year. Um, they each kind of have a little sub theme, so we can really like dig into some different, um, aspects of them. But yes, in June, I always publish the body issue. And in October, I always publish the metastatic issue.

K: Okay. Thank you. And then my entry level, um, introduction to Wildfire Magazine in print was this compilation that you put out about, I think, a year ago, Igniting the Fire Within, Stories of Healing, Hope and Humor. This is a little bit less art heavy than your typical wildfire magazine. It's really just mostly words, but it's broken down instead of topically, like the magazines are, it's broken down by age group. So you have Is it starting with twenties or thirties? I can't remember.

A: Starting with 20s. Yep. So 20s, 30s, 40s.

K: Okay. So for those who want to get kind of a highlight and, um, maybe the every other month subscription is a little bit too indulgent for you. This is a really good way to start with this compilation, um, which you can get on welfare community.org. You can also find April's free pop up writing workshops. She does a lot of free workshops. I've done a couple of those and really enjoyed it. And then this October she's starting a couple of more intensive writing experiences. One is kind of an in person retreat experience, which is kind of a new thing. And I’m super bummed I can't make it. I'm actually going to be in the Bay Area, but for other things and won't be able to go to it. But maybe the next one. Um, and then she's also doing her “Fire Starters”. It's a 6 months project, um, kind of a mentoring and continual feedback in honing a larger body of work or a larger memoir. And that goes from this October to next March. And of course, you can get The Burn for free. You can listen to all of the essays that have been read aloud by the authors themselves as a really good first taste. And like I said, that was just so healing and so timely for me. I highly recommend if you're a podcast listener to go to The Burn. Then I want to mention too, that April has been interviewed on a few other podcasts. I think I first learned about you on the Breast Friends, which is a local Oregon podcast that's no longer being recorded, but there's still lots of episodes being aired. And let's see. The other one was Dr. Teplinsky's That was a little bit more recent and a really good interview with you about the magazine itself and some of your Your other stories. So I think that's called interlude with Dr. Eleanora Teplinsky. And I'll, I'll link to these, um, in the show notes for today.

Thank you, April, for joining me. I'm so honored to have you as one of my first guests. You were at the top of my list of people to invite on. And I hope that I can have you again, because I know there are so many stories that you have to tell.

A: Thank you. It's an honor. I'm so thrilled that you decided to do this podcast. I think it's going to help lots and lots of people. So, thank you for letting me be a part of it.

K: Yeah, yeah, and someday we'll meet in person, but thanks so much for all that you're doing for our community in the meantime.

A: Absolutely. Thank you so much.

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The work that April does at Wildfire Magazine has been one of my biggest comforts in breast cancer recovery, because the stories told by her writers provide comfort and solidarity. I see April as an activist on many levels but mostly for the themes that she chooses for her magazine. Themes like "Body: A Changing Landscape" and "Fertility" and "Identity and Aftermath". She is a wonderful curator of story. I'm so thrilled to be sharing a little more of hers on the podcast.

Wildfire Magazine is at: www.wildfirecommunity.org

April's other podcast interviews are here:

https://podcasts.apple.com/us/podcast/107-april-stearns-breast-cancer-survivor-and-founder/id1451816690?i=1000567583964

https://podcasts.apple.com/us/podcast/well-this-sucks/id1258071561

Transcript:

K:

Today's guest is April Stearns, founder and editor of Wildfire Magazine. April has been a hero of mine for over a year now, and she was one of the first people in the breast cancer community that I discovered who really brought a lot of solace and healing in my own life when I was feeling super alone and isolated, and just not sure if I could access people that would relate to my story. So, April has a tradition of inviting breast cancer survivors to tell their stories in short essay form and she publishes them in a magazine that's a print and a digital magazine. It's called Wildfire Magazine. And she also has a podcast where the writers of those essays are reading their essays aloud on The Burn, which is the name of her podcast. April has 12 years, no evidence of disease at this point. And she's been in the breast cancer community from the beginning. So she's a veteran and super connected. She's done a number of other podcast interviews and I will mention them down in the show notes for you to look at and listen to because she has an amazing story. And today I want to ask her some questions that haven't been covered by other interviews. And I'm hoping to dig a little bit deeper. So I'll just tell you at the offset that April's diagnosis was hormone receptor negative and HER2 positive and she was stage three and she did take Herceptin, which is that HER2 growth factor receptor drug for 13 months, right, April?

A:

I did.

K:

The first thing that I want to ask you about is what happened less than a year after you were done with treatment. Um, you had a family member that was also diagnosed with cancer and it sounds like that changed your story quite a bit and kind of had a big decision to make. Can you tell us, start out by telling us a little bit about that story?

A: Yeah, absolutely. So my dad was diagnosed with cancer, and for my whole family, that was a real big surprise. It was obviously surprising that I was diagnosed when I was, but even though my dad was—I think he was 61 when he was diagnosed. So even though he was more maybe in the age that we come to think of people being diagnosed with cancer, our family didn't have a history of cancer in that way. And so to first have me be diagnosed and then shortly thereafter him was a huge shock to our family. I think that the, the big thing was that once his diagnosis came, I knew immediately that I was going to be his caregiver. I didn't have any question about that, number one, because of my proximity to him compared to my brothers. I was just much closer to him. My mom had already passed away. It was obvious he was going to need care. And I had just been through it. You know, it felt like an opportunity to maybe give back to him some of the stuff that I had learned through my own experience. I was like a cancer baby. I had no idea what I didn't know yet, but I felt like I knew a lot and could help him with things like chemo side effects. The insurance stuff, you know, logistics around cooking, cleaning, just getting him where he needed to be and comfortable. And it felt really, really good. It suddenly felt like there was a reason why I had been diagnosed and I had a purpose to fulfill. And that was, I think, really helpful to my mental state at that time when I was just wondering, okay, what now?

K:

I've heard you tell part of this story and it sounded like you had a big crossroads at that point when you make the decision to care for your dad.

A: Yeah, I think I was really grappling with the “should I stay in cancer land or not” question. And prior to my diagnosis, you know, I didn't have any connection to cancer and I had a completely different career. I was a conference producer. So when I got to be his caregiver and I got to give back in that way and come face to face with how much I didn't know in my own survivorship and how much support I still needed, even though I was, you know, NED and supposedly released to the wild by my care team, being able to care for him in that way, like I said, it gave me so much purpose. It made me feel like, okay, I really do want to stay in cancer land and try to help others. It feels good to me. And, um, I wanted to do that anyway I could. I remember my therapist really kind of feeling like, Hmm, is this the right choice for you? Are you sure? And I just felt like I have never been more sure of anything. Like I really need to find a way to, to try to give back. K:

What was it like quitting your job at that point?

A: You know, it ended up being easy. Um, my employer ended up not being as supportive the second time around when my dad's diagnosis came and really felt like, you know, we already did cancer with you. We already supported you through these 13 months, you know, from diagnosis to end of active treatment. He really wanted me to get back to quote unquote “normal.” And I also felt really guilty for the fact that I was at diminished capacity. I didn't know that going in. I don't think anyone really knows the exhaustion and, you know, chemo brain and all of that stuff that kind of comes with going through treatment. And so I was that person, um, in the chemo lounge on my computer, you know, trying so hard to meet deadlines and just keep working, working, working, working at nights, like all of it. And then when my dad's diagnosis came, I actually didn't ask to quit right away. I asked to go part time and that's when, you know, he threw up those, these big roadblocks for me and said, "you know, I don't think we can support you doing that. Isn't there anyone else?" And I was really turned off by that. It was offensive to me that he would ask that I had been working there for years and years. And so I just remember I worked from home. He was, you know, many States away and he kept me on the phone for over an hour. I was crying, I was pleading my case. And I remember my husband just coming and quietly opening my office door and mouthing to me, just hang up. You don't have to do this, just hang up. And so that's what I ended up doing. And, um, it ended up being the best thing. It's funny. I just recently in the last couple of years discovered a message from him on LinkedIn that I didn't even know was there from a year later asking me to come back and try it again. I'm actually kind of glad I didn't see it. Cause I probably. Would have, you know, I was a year into, you know, grieving my dad's passing, trying to figure out how to move forward. And I might've gone back at that point. And so I don't know, the universe saved me from that. And I didn't even know it was—it was waiting there. Something else was calling to me. And so I did something else instead.

K:

It sounds like your dad passed away pretty quickly. A: He did. He, it's interesting. He was, um, I think about five and a half months from diagnosis to passing. He had a few symptoms prior. So I would say, you know, he started being sick maybe in January of that year. That was 2014. And then he passed in September and was kind of eerie when I looked back and counted up how many days I literally got from him from diagnosis to his passing. And I literally spent a hundred days with him in that time. He wanted his weekends cancer free. So I didn't, I didn't go to his house on the weekends. He saved those for hiking and riding his Harley motorcycle and things like that. But Monday through Friday, eight to five, I was there with him and we got a hundred days and I think it was a, it was a real gift. I'm really glad I got to do that with him.

K:

Yeah. Yeah. I can relate. I had the same choice with my mom and it was absolutely no, no contest. I was, I was there for her as much as I needed (she needed) and I'm so glad that I had that opportunity. So while you were caring for your dad, what were your thoughts about future employment or vocation? Were you already dreaming up the magazine or did that come later?

A: You know, I don't think I really had the mental space in that time that I was caring for him, and my story was complicated a little bit by the fact that my mom, as I said, had passed away and she died seven years before my dad and my dad had not moved her things out or done any kind of work after she died to kind of settle that part of, of our childhood home. And so after my dad passed, I had a real big job on my hands to kind of settle the estate, clean out the house. It was a big house and my parents had lived there for the 31 years that they were married. And so I think I just dove into that as a way of kind of dealing with my grief. I just needed to keep busy. And so it wasn't until the, it was about 18 months, I would say, until I was able to sell his house and have everything kind of buttoned up and put away. And it was in the last six months of that, that I think I started to really wonder what was next. And coincidentally, I ended up enrolling in a writing program, um, an expressive writing program in my town. It was an in-person thing, and I started going to it to deal with the grief of my dad passing, and also kind of coming face to face with my own survivorship and the survivor's guilt that I had around it, and the pain I was feeling that I didn't know was specific to not knowing anyone else diagnosed young. I didn't have any connection to the younger breast cancer community at that point. I think they were starting to form Facebook groups and maybe on Instagram, but social media was different, you know, 12 years ago, and I wasn't hooked into that. Perhaps I could have tried searching on something like Craigslist, but I just, it wasn't occurring to me that there might be a whole community out there because all through my experience of treatment, I saw no one else in my doctor's office or in the chemo lounge who was younger. So I think on some level, I literally thought I was the only one. And it was so painful to have questions around, you know, career, fertility, sex and intimacy, like all this stuff that was cropping up from like medical menopause and really feel like I had no one my age to turn to. I ended up in this writing class. Most of the other people in there were older women, like retirees who were now like wanting to write their memoirs. But there was one other young person I found out later she was about eight years younger than me. And she was dealing with breast cancer diagnosis. Hers was actually a recurrence, a metastatic recurrence. She had been originally diagnosed one year before me, also stage three. And then we both landed in this writing workshop. And it was so serendipitous, you know, I was going through this like grief and what next and I need community and there she was—we just became friends right away and it was through discussion with her that I realized: Number one, there's others out there. There has to be, if I just found one, you know, in my town. And number two, we could not stop comparing notes, texting questions. We were talking constantly. And so that was kind of where the magazine started to develop because I just thought she is a wealth of information to me. I could see that I was to her. And then I just pictured that, you know, blowing up across and I knew it wasn't going to be a book because I didn't have the answers. I didn't have anything to share. I just wanted to make a place where we could bring that collective information and help others feel less alone. And so that's kind of where it started to percolate. And also the fact that I have a journalism background and have been a writer and used writing as that healing tool. That’s also kind of why the magazine was the resource I wanted to create versus, you know, other resources that others have created.

K: It's such a beautiful piece of art like I'll show it for those that are watching on YouTube I'll show some of the covers in a minute, but I wanted to ask: It sounds like, just hearing your story, it sounds like your dad's vocation of being a firefighter was a big thing part of the name, at least, of Wildfire Magazine and, uh, the imagery that you kind of present at the beginning of each podcast episode is that the cycle of nature and the tendency for a forest to catch fire, um, naturally can be a healing, even though it's a devastating process. Um, how did that, can you tell the story of how that kind of, happened and, and how your dad's spirit is, is alive maybe in the work that you're doing now?

A: Yeah, absolutely. I love talking about this. Um, So I grew up with my dad being a volunteer fire, um, fighter in our area. I grew up in the Santa Cruz Mountains. Which was an area that was kind of unincorporated. And so in order to have fire protection, it was a volunteer led company. And it was something that my dad got involved with when he and my mom first bought their property up there, I think in 1975, maybe. And really soon after that, he became the chief of the volunteers. I think a little bit by default, cause you know, there wasn't a lot of hands on deck and he was passionate and he kind of grew with the role and learned it. So by day he was working at IBM down in Silicon Valley and by night and weekend, he was a volunteer fire fighter. And so I grew up in this culture of volunteerism and this culture of fire and there was a couple of big fire, um, you know, forest fires, wildfires as I was growing up. And so I saw the devastation. I saw how the community came together. And then I saw that process of regrowth afterward. And most recently in 2020, we had another forest fire here in the Santa Cruz area and so I'm constantly reminded of it again Just yesterday, in fact, my daughter and I were driving through what they call the burn scar, you know, which is like where the path of the fire is, and we live in an area where there's a diversity of trees, but the primary tree here is the redwood—the California redwood. And I learned as a young person, and now I'm seeing it, you know, literally happening that the redwoods are very resilient to fire and in fact need fire to unlock their seeds. And so driving through the burn scar, you can see all these brand new baby redwoods sprouting up and also the redwoods themselves—the mature ones—looked like they were devastated are completely fuzzed out with all this new growth that feels like they're going maybe through a new puberty which feels very like I can relate to that as you know in medical menopause, And so growing up in this culture of fire I just knew that there was two sides to that coin, you know, something very devastating happens, maybe loss of homes, loss of life potentially, what it can do for the forest can be really reinvigorating and can clear out all that brush and just make way for new life. And so after my dad passed away and I was starting to think about doing this magazine. I was really coming face to face with two sides of that coin. You know, he had passed and I was still living and I was getting clarity on what mattered to me and the life that I wanted to live and how I wanted to get back. And it felt like that forest floor, you know, I was both sad and seeing myself reemerge as something new with space to kind of see that grow. And so that's the message of the magazine I wanted to give is this honoring of the destruction, the trauma, the pain. Asking that question, you know, what, what comes next after that? And what will you, what will you create? What will you hone in on? I think.

I guess I want to say to it's a little bit different than the silver lining message. I think we get in cancer. I've been really resistant to that. Um, it feels a little like toxic positivity, which to me doesn't mean that we don't need positive images. We just also need the real and we need the honesty and the space to be honest. And I think that's also what that kind of two sides of the of the forest fire also can, or it brings to mind for me as part of that metaphor.

K: Yeah. I love that the magazine is a tribute to your dad in that way too.

A: Me too. I'm, I'm honored to keep him alive in as many ways as I can. And he taught me so much about, you know, giving back and being part of community and taking leadership roles where possible. And, um, yeah, I, I know you'd be really proud of it and proud of me.

K: You talked a little bit about the need to compare notes, um, being in the younger generation. So Wildfire is featuring writers that have been diagnosed prior to age 50, um, even if they are currently over age 50. And I made it just under the line, but I do identify with that generation that you're talking about who needs to not sweep things under the rug, not to just kind of go about their own lives as if cancer didn't happen. And, so I wanted to ask you a personal question about your journey that, um, is particularly of interest to me because I have found very few women to talk to in my recovery process who chose to be asymmetrical or to have, um, a single breast to go forward in life as a single breasted woman. Um, and so I really value your insight and your experience of 12 years being single breasted. I know I've heard you say in other interviews that you, there are elements to this that you did not expect and you didn't plan for and didn't even factor in. Uh, but I do want to hear kind of what your decision making process was. How did you know it was even an option? And how did you come to this as a way to go forward permanently?

A: Yeah, I, so it's interesting, you know, when I'm, um, doing writing workshops with people, I am always bringing this idea of, you know, what is your unique story? And what was the lens through which you saw your cancer experience? Versus, you know, leaning on the diagnosis details or the treatment course. And so the example that I use in my workshops is the fact that everything that came after my diagnosis was through this idea/lens of how to get back to parenting my daughter as quickly as possible. So my story starts with a lump found one night while breastfeeding my daughter. I had to wean very quickly, almost overnight. I was in chemo within two weeks of my diagnosis. Like things moved incredibly fast partially because of the pathology, you know, the HER2, it was growing very fast. It was already in my lymph nodes at that point. Um, and the tumor was already seven centimeters also. And so I had a course of treatment that had me having chemo first. Some people have a mastectomy first. I had chemo first as a way of seeing, you know, if the chemo would even be effective on it was a good way for us to test, but also to shrink it so that I might have surgery choices. But for me, you know, living for six months, seven months in chemo with that tumor in my breast where I could feel it every day made me feel pretty certain that right off the bat I knew I wanted to have a mastectomy. It just felt like it was so big, so aggressive. It just for me personally didn't feel like a lumpectomy was going to be the right choice. Had it stayed as large, also, there wouldn't have been much breast material to work with. Um, you know, if they’d have had to cut around that, I got lucky and had a complete pathological response to my chemo, which was lucky. I don't know why or how, you know, sometimes there's just stories like that in the cancer space. And I got to be one of those. Um, but even still, I decided to have a mastectomy. And the reason I decided to have a single mastectomy was kind of twofold. Number one, I wanted to preserve another or a breast in case I might breastfeed again, and I had hopes of having another child and number two, I wanted to preserve sensation. And that was something that I kind of came to over those six months as I kind of learned more about, I guess, my body and thinking about sex and intimacy after mastectomy. That wasn't the main thing, but it was there kind of in the back of my mind. And then in terms of my decision not to reconstruct, um, with breast mount surgery, but rather to do aesthetic flat closure, that was purely: “How fast can I get back to my child? How can I minimize surgeries?” And so somewhere in that, I saw a poster that was a beautiful image of a woman who was one-breasted. She was flat on one side and had a breast on the other. She had her arms outstretched. She, I think was standing on top of a mountain. Like she, it looked like she was a tree herself. It was such a powerful image. And my husband and I both saw it in our local cancer center. And it was just like, Oh, I want that. Like, whatever that is, I'll do that. Um, and so then when I went and met with my surgeon and, and said that that's what I wanted, he just said, okay. He didn't ask my husband if it was okay with him—you know, some of the stories I've heard since, of people having to fight for flat closure. I had none of that. He just said, okay, no problem. And I came out of surgery completely flat, no skin sparing or anything against my wishes. And, um, and, I have no regrets about it. I did wear a prosthetic breast form for about five years and it was really big. As you mentioned, I'm double D on one side now and flat on the other side. So I had this, um, they called it an equalizer and I think it was about a pound and a half, two pounds. And I stuffed my bra with it every single day, on hot days, even camping. Um, and I didn't know I was going to do that. I thought actually I didn't need it. And then it seemed that my daughter needed something to help her with that transition to cancer treatment and after cancer. She by then was a little bit older, you know, talking and it turned out she thought I still had cancer because my breast hadn't grown back. so I felt like I needed something to kind of bridge that for her. She loved my breast form so much. She used to carry it around. She named it pork. No idea. Why? Um, but she would like slap it and pat it and sometimes I couldn't find it and she's like, Oh, it's cooking. Like, I don't know. It became this whole other entity in our relationship, but it really, I think, helped both of us. And I ended up developing a dependency on it. And then after five years of faithful service, it kind of exploded one day in my breast, or in my bra rather. And I tried to tape it together with duct tape. I did everything I could to preserve that thing. Um, and finally it was gone and I had to throw it out and go half flat while I waited to get another prescription for another breast form. And in that time I realized I was okay with being out in the world half flat and I kind of liked my body better and it was a really interesting thing to realize I felt sexier with one breast than I ever had with two and I think I was just ready by that point and so now it's been six, seven years that I've been living half flat. And occasionally I'll wonder, you know, how I'm coming across in the world. And if people are noticing, but number one, I don't think I really care that much anymore. Number two, if I do care, I kind of like that my body is, you know, advocating for what, what a breast cancer experience can look like and leave, you know, a body looking like. And number three, I actually don't think people really notice that much. I think we think they're noticing things and they probably aren't. So I'm I'm fine with it. I know for some people, my body represents a worst case scenario, you know, having such a large breast and then the flat side. But, um, I think the cool thing is there's so many different surgery types and different people and we can find the right one for us. And I'm just really glad there's options.

K: Yeah, I am so amazed that you had that photo up in your cancer center. That is so amazing to me because you just don't see that kind of imagery presented very often in the breast cancer community at large. So it just, it makes me so happy to hear that that was there, and that you responded, yes please,

A:

Right? I know. Well, you know, what was also really interesting is, um, so even though we didn't have a family history of cancer, my grandmother did have metastatic breast cancer when I was young. It was after I had my flat closure surgery that I realized that she had a flat chest. But it was not something our family talked about, that was not part of, I think, her generation to be so open, you know, about either cancer or bodies and things like that. But it was funny, I realized, when I put the pieces together after the fact that her shirt fell the way my shirt fell. I remember kind of getting a little glimpse, you know, maybe inside her shirt when she would hug me or something and things looked a little different and suddenly I could piece together what I was seeing. I remember, um, kind of what it felt like to hug her too. And I didn't know as a young person that it was very different, but it was, you know, it was stored somewhere. And so I had that kind of recognition after my own. And that also kind of felt like a nice connection to her in that way.

K: Yeah. I bet it's somehow, sub-consciously affects your confidence level too, to have had an elder in your family, someone that you trusted and valued that didn't have any shame about going around one breasted. She had, obviously she wasn't using a prosthetic—at least part of the time.

A: I mean, I wish that, you know, knowing what I know now, I've got a million questions for her. I don't know, you know, what, how she made her decisions or anything like that, or if she had a breast form, but it's also influenced me to be more open. My daughter knows obviously everything, but it's kind of, I think, why I'm comfortable being out in the world when breasted too, because maybe someone will have that recognition at some point, you know, when they need it too.

K: Yes, yeah, I definitely have those moments myself, like when I go to the gym, that's when my clothes are the tightest and I am always somewhat self conscious. I have a much smaller Goldilocks breast now on my right side instead of a double D like I had before. Um, so, much less self conscious, but I go back and forth between pride and loving my body just for how it is and being kind of an ambassador of truth: “This is breast cancer and it's okay. I'm not, you know, I’m not self loathing after breast cancer.” And then, you know, that kind of awkwardness, just like, am I appearing to be attention seeking here? Or, you know, do you have those moments? Like, do you ever have those doubts or feelings?

A: You know, it's interesting because my relationship with my body has gone so many different directions since, you know, being young. And I remember dressing for cleavage and I remember, you know, that I liked how that looked and I liked that attention. I haven't felt that same feeling since being, you know, Asymmetrical, but I do have a swimsuit that has a little, like, cutout in the front, kind of where cleavage would be, and it's my most, like, obvious, you know, that I'm one breasted, I feel like and I feel really sexy when I wear it. Maybe that attention seeking still in there, you know?

K: Mm hmm. Yeah, I'm just starting to get to where I can admit that I like to wear asymmetric clothing because it accentuates my asymmetry. Like I would have never even thought to admit that before, but yeah, it's true. It's kind of an adventure learning about your new body.

A: I know, and I really appreciate that, you know, we're starting to see bras and different things that are designed for asymmetry that don't necessarily—it's, it's hard to like describe, but it's almost like it accentuates it or it celebrates that this is the difference in the body instead of what I used to do which was just take the padding out of one side and it was like, okay, it's obviously a bra for two breasts, but it works ok, versus this is a bra that's specifically made for someone like me. And that feels really good to celebrate, you know, it's not just a body that's working. It's great. It's beautiful. Just that way.

K: Yeah, I felt so honored when, I think it was Eno Eco is the name of the brand that just sent me a one breasted bathing suit top/bra and I didn't get it until It arrived and I saw it in physical form and I just felt so honored honored, like, Oh, yeah, this is for me. And I matter too. And my body is a part of the collective of acceptable bodies in the world. And they made this for me. So yeah, there's something really affirming. And, and the most strong urge for me is, has been just to be honest, like the first time I took that big prosthetic out of my bra and went out in public, I felt so much more myself and authentic and I wanted to keep being that way. So that's been such an amazing process and to be able to live in a time when it's, it's safe to try that out is, is really a blessing.

A: I think so, too. It's interesting what you said about feeling more yourself, because I had that experience, but kind of in a reverse kind of way, with, um—so sex and intimacy have been a big part of my survivorship challenges, I guess, you know, things I've needed to overcome and I realized at some point that the fact that I was wearing my breast form out in the world meant I was kind of passing as having like a normal body, you know, “normal” body out in the world and then in my home in my bedroom, I would feel kind of different, other, strange... and I wanted to flip the script on that. I didn't want to feel way at home, I wanted to feel either… I don't know that I wanted to feel abnormal out in the world, but I at least wanted to feel normal at home and go and, you know, removing that breast form really helped me to do that.

K: Yeah, it sounds like it was kind of a surprising, fortunate happenstance that you, your breast form exploded and you couldn't get another one right away. And you learned this thing about yourself. And now it's been like, what, seven years that you've been going without?

A: It's so funny. I mean, I think that there's probably a lot of examples of that, that we can find acceptance when we're kind of pushed out of our comfort zone a little bit and then realize it's not even just acceptance. It's, oh, this is—this is better than, than it was before. I'm not just making do.

K: Yeah. So you talked earlier about the idea of cancer and silver linings. And I wanted to ask you, because I know you've heard a lot of people tell their—the gifts that they've gotten from cancer as well as the things that make them really angry. And I know you're not shy about publishing the angry pieces and I really appreciate that. So I've been wanting to ask you those two things about your story. Like what is the best gift and then what is the thing that makes you the most frustrated or angry, yourself?

A: Yeah. I really like this question. I do think there's both sides to the whole thing. I think for me, kind of the best thing that has come out of my diagnosis is the entrepreneurship and the opportunity to create a resource that I needed. I didn't know I had it in me, you know, to found a business, to lead a team of others who've also been diagnosed with breast cancer and to form a community around something. It's funny because in my previous life as a conference producer, the place I was working when my dad was diagnosed, I was really good at that job too. And I had a coworker, we were the two who worked mostly together and she was nudging me for a couple of years. Like we could do this, like we could go out on our own and do this. And I remember at the time feeling like, I don't want that risk. Like, I, I don't know. That just sounds like a lot of sleepless nights, you know, making sure that the numbers meet and blah, blah, blah. And then fast forward and all of a sudden here I am being like, I'm ready to take on that risk. It feels worth it to me, it feels important to me. I think I can do it. And I knew so little if, in fact, if someone had told me all the work that went into publishing a magazine in the cost, I probably would have been terrified and not done it. So I'm thank you, whoever didn't tell me that, like I needed to not know. I just had to go blindly into it. I think that that's been such a gift to learn that about myself, that I had it in me to, to do this. I get so much joy out of the work and the community. And, um, getting to teach people how to use expressive writing as a healing tool is such an honor. And so, yeah, I don't know. Maybe I would have had another illness at some point and somehow this would have come out. Maybe it wasn't meant to, but I'm really grateful for the opportunity to learn new things about myself and have this, this be a part of my life.

And then in terms of like the, the bad side, I think it's kind of connected because I have now lost so many people over the years. I founded the magazine and the writing community in end of 2015 launched the first magazine, 2016. In those years, I recently counted up, I believe I've lost close to 65 people to metastatic breast cancer. And I feel every single one, you know, because these are whole people that are now missing from our, our world, our universe, and the solace that I get is that if they came through wildfire, then I have their words. You know, I, either I've published a story of theirs in the magazine, or I've heard them read their story and share their story in the, in the workshops and love. That I've had the privilege of amplifying their voice, amplifying their story, maybe helping them find a story they didn't know they had that legacy lives on. Those echoes just continue to live. And so I hate, hate, hate, hate that people are still dying of this disease. And I I love science. I love that science has progressed and I also am angry that it hasn't progressed further and that we're still dealing with this, and so, yeah, it's, it's both those things.

K: Thank you. I really see you as an activist, um, in your work and I know it's kind of behind the scenes, but you are choosing to publish themed, you know, magazine themes, every other month that are very daring, like on metastatic breast cancer. That is very daring in my view. Personally, when I started listening to The Burn, I couldn't listen to the episodes about metastatic breast cancer because I was so fearful of recurrence and I didn't want to add to my anxiety. But then when my mom was diagnosed with metastatic breast cancer, I clung to those episodes and they've been the most precious to me. And I realized that's not going to be the case for every breast cancer survivor. They, people can't always handle hearing about the worst case scenario. Um, and some people don't benefit from that, but I so appreciate your willingness to go there in spite of the pain and the awkwardness, that people associate with hearing these very, very sad and tragic stories. There's also the bright side of seeing that people are resilient enough to deal with the sadness and the lack of control over their life and their death. I just, I really want to thank you for your being bold and courageous and publishing those stories, even though they really scare people like me early on. And then also other topics like fertility that just need more airtime. Um, like I know yourself 12 years ago, nobody mentioned to you that you could maybe save some eggs and now that's more normative, but probably not as normative as it should be still.

A: Yeah. Yeah. Yeah. I just want to circle back for a second on the metastatic stories. You know, I think that one of the things that really helped me, in my own fear around, you know, developing metastatic disease. And, you know, I still, I don't consider myself by any chance, um, scott-free or anything, even though I've been living 12 years NED, I just know that we don't know, you know, what will happen until we pass away from something else perhaps. But I found that it was almost, it was almost helping to just read and face something that was scary to me because partially because, you know, the, my breast cancer bestie who I met in that writing group so long ago, um, when I met her, she had metastatic disease, she is still here and living. She has been living with us for 10 years now. And I found that she's so much more than her diagnosis, so much more than metastatic breast cancer. And so part of my inspiration for publishing metastatic stories is also to educate the rest of the breast cancer community that, you know, life isn't over upon the day of a diagnosis. There is so much living that happens between the lines. And I love drawing that out, you know, and helping people to both experience that realization themselves, you know, as a person living with metastatic disease or just living with, you know, in the aftermath of a cancer diagnosis to realize, “Oh, I'm still here. I'm still living. I still, you know, I'm learning things about myself and changing.” and then I do hear from people with metastatic disease who read the metastatic stories and get so much hope out of them. And I think one of the things the world doesn't know about cancer stories is that they are so hopeful even when, you know, quote unquote, it's the, the worst case scenario or something so scary. I think our media, our society tends to not want to face those stories, but in that they're not seeing how much living is really happening in there and how beautiful. You know, even my own dad and his metastatic, diagnosis. He, he did so much living in those six months and learned so much about himself. He really, really embraced this idea of legacy and passed things down to me and my brothers. And I was so glad that he didn't give up the day, you know, the day of that diagnosis.

K: Yeah. Yeah. That's a story that I wanna tell on the podcast so badly. I wanna tell the diversity of situations in which someone can be living with metastatic breast cancer. Cause I think we're so shy when we meet someone with Mets, like you just don't want to ask about all the ins and outs, but there are a few people out there that are willing to tell you and it takes away so much of the fear and the stories that you've published have taken away the fear for so many, I think. So thank you for that.

A:

Yeah. Absolutely, and to your point too, you know, I think there's so much to survivorship, know, whether you're early stage or stage four diagnosed, there’s so much nuance in there that we really have to cut and dice and slice, you know, all these different things. And one of my favorite questions to ask people as a counter to that classic, like, “You're okay now, though, right? Like, you look so good. You're great now, right?” Instead, I feel like we need to be asking, “What is your biggest challenge in survivorship? You know, what is survivorship like for you?”

Because, again, it goes back to that idea of like, What is my life like, and what is that lens through which I'm looking at my whole experience, you know, and is it a parenting with cancer experience? Is it parenting with metastatic cancer or maybe something else, you know, that's a working, um, career lens, or maybe it's a financial lens, or maybe it's, you know, very body focused. Like there's so many different variations on this experience. So, yeah, I love having different themes for the magazine to really dig into all those different types of stories and all around the world too, you know, it's very different if you're diagnosed in an area that has a lot more stigma maybe around the experience and maybe you don't have as much community versus someone, um, you know, here in California, Santa Cruz, I'm, I feel very open and free with my cancer story.

K: Yeah, so you touched on some of the themes of Welfare Magazine. I have, for those watching on YouTube, I have, um, the latest issue. This is the body issue, which comes out every year, annually. Um, so six additions every year, and body is one that you stick with annually and the others, a lot of them change quite a bit. You also have a metastatic one every year, is that right?

A: I do. Those are the two issues that I do every year. Um, they each kind of have a little sub theme, so we can really like dig into some different, um, aspects of them. But yes, in June, I always publish the body issue. And in October, I always publish the metastatic issue.

K: Okay. Thank you. And then my entry level, um, introduction to Wildfire Magazine in print was this compilation that you put out about, I think, a year ago, Igniting the Fire Within, Stories of Healing, Hope and Humor. This is a little bit less art heavy than your typical wildfire magazine. It's really just mostly words, but it's broken down instead of topically, like the magazines are, it's broken down by age group. So you have Is it starting with twenties or thirties? I can't remember.

A: Starting with 20s. Yep. So 20s, 30s, 40s.

K: Okay. So for those who want to get kind of a highlight and, um, maybe the every other month subscription is a little bit too indulgent for you. This is a really good way to start with this compilation, um, which you can get on welfare community.org. You can also find April's free pop up writing workshops. She does a lot of free workshops. I've done a couple of those and really enjoyed it. And then this October she's starting a couple of more intensive writing experiences. One is kind of an in person retreat experience, which is kind of a new thing. And I’m super bummed I can't make it. I'm actually going to be in the Bay Area, but for other things and won't be able to go to it. But maybe the next one. Um, and then she's also doing her “Fire Starters”. It's a 6 months project, um, kind of a mentoring and continual feedback in honing a larger body of work or a larger memoir. And that goes from this October to next March. And of course, you can get The Burn for free. You can listen to all of the essays that have been read aloud by the authors themselves as a really good first taste. And like I said, that was just so healing and so timely for me. I highly recommend if you're a podcast listener to go to The Burn. Then I want to mention too, that April has been interviewed on a few other podcasts. I think I first learned about you on the Breast Friends, which is a local Oregon podcast that's no longer being recorded, but there's still lots of episodes being aired. And let's see. The other one was Dr. Teplinsky's That was a little bit more recent and a really good interview with you about the magazine itself and some of your Your other stories. So I think that's called interlude with Dr. Eleanora Teplinsky. And I'll, I'll link to these, um, in the show notes for today.

Thank you, April, for joining me. I'm so honored to have you as one of my first guests. You were at the top of my list of people to invite on. And I hope that I can have you again, because I know there are so many stories that you have to tell.

A: Thank you. It's an honor. I'm so thrilled that you decided to do this podcast. I think it's going to help lots and lots of people. So, thank you for letting me be a part of it.

K: Yeah, yeah, and someday we'll meet in person, but thanks so much for all that you're doing for our community in the meantime.

A: Absolutely. Thank you so much.

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