The Serenity Project

Jamie DePolo: Hello, everyone. I'm Jamie DePolo, the senior editor at Breastcancer.org. Welcome to this edition of our podcast. Our guest is Beth Fairchild. She was diagnosed with de novo metastatic breast cancer in 2004 at age 34. The diagnosis was a surprise to her because her mammogram results from the month before were negative, and she had never had a lump in her breast. Beth was familiar with breast cancer, though. Her mother was diagnosed with breast cancer at age 44, and her paternal grandmother died from breast cancer at age 33. An artist and tattoo professional, Beth and her husband own five tattoo studios. Her focus is on permanent cosmetics, scar camouflage, and areola restoration for people diagnosed with breast cancer.

Beth is the current president of METAvivor, a nonprofit organization dedicated to increasing awareness of metastatic breast cancer and funding research on metastatic disease. Beth also is one of the creators of the Serenity Project, a metastatic breast cancer support campaign that gives patients an opportunity to tell their personal metastatic breast cancer stories through a series of photos and videos. In this first of two podcasts with Beth, we're going to talk about how the Serenity Project came to be and its goals. In the second podcast, we'll talk about nipple tattooing.

So, Beth, we're delighted that you could join us today. I'm very excited to have you as a guest because I feel like the Serenity Project is one of coolest things I've ever seen.

Beth Fairchild: Thank you, Jamie. It was definitely a labor of love, and we are very proud of the way the project turned out.

Jamie DePolo: Tell me a little bit about it. I know you were one of the driving forces behind it. So, if you could talk about, you know, what it is and how the inspiration, how you had the inspiration for the idea, and how it finally came to be a reality.

Beth Fairchild: So, I've always been kind of a water bug, drawn to water. Whether it's the ocean or a lake, a stream, it's just something very healing to me, very calming, relaxing. And just by happenstance, I met a photographer, Keith Dixon, and he had lost his wife to metastatic breast cancer. And he had this idea that he wanted to go and photograph patients in cancer centers and kind of document their journey because he had felt like he hadn't taken enough photos of his wife through the process. And they had a daughter together and, you know, she was 10 years old when his wife, Serenity, for whom the project is named, passed away. And so all Trinity, their daughter, has now are photos. And so Keith expressed to me regret for not having photographed her more often.

Keith was trying to get into underwater photography, which really intrigued me. So, I drove out to Tennessee one Saturday and hopped in a swimming pool and allowed him to photograph me underwater. And it was such a freeing experience. There are certain movements that I could do underwater that I could not do on land because of limitations from my mastectomy and my abdominal surgery. And seeing the images later that night were just — I really can't find a word for it. I just was so blown away by the fluidity in my movements, the gracefulness. And it was almost as if the water represented metastatic breast cancer and that I was immersed in this new life, this cancer culture, surrounded by it – however, was still graceful and sexy and feminine and free. And so I thought that I would like to offer that opportunity to other patients, and that's when the idea for the project was born.

Jamie DePolo: I've seen some of the photographs, and in the final project, people are wearing body paint. Were you wearing body paint the first time you did this? Or how did that layer get added into the project?

Beth Fairchild: I was not wearing paint because, of course, I'm heavily tattooed anyway so it just wasn't on our radar at the time. But Keith remarried an artist name Ren Allen, and Ren's mother had died from metastatic breast cancer. And so I kind of wanted to just include everyone because they had been so personally affected by it, and I thought that when I sat the patients down for their interviews that Ren could listen in and then interpret their experiences into a piece of art that they could wear underwater. And so that's how the body paint came into play. Because we wanted not just a beautiful experience and photograph, but we wanted the photograph to kind of represent what that person's life was like before cancer.

Jamie DePolo: How did you select the participants for the program? Because I know I've talked to one, Kelly Shanahan. And she was funny, when she described it, she said, “Yeah, I thought I'd go this thing and it didn't really stick in my head about the naked body paint.” How did you decide on the people?

Beth Fairchild: So, there was an application process. We circulated an application online, in our support groups, and on the METAvivor Facebook page. And I think the first year we had about 63 applications. And so we dug through those, and we wanted to have a diverse group of people. So, it was important for us to have a man included. It was important to show diversity within disease types, so hormone-positive folks, HER2 folks, triple-negative folks, endocrine folks, and also, you know, socioeconomic backgrounds, cultural backgrounds.

So, we have one patient, Susanne Kraus-Dahlgren, who was deaf from childhood after an illness. So not only did she live with a handicap, she was then diagnosed with metastatic breast cancer. We had an internist, a medical internist, Jaleh, who was in her 70s. She was living with mets to her pericardium for 7 years, but she was from Iran. And in her culture, they don't talk about cancer, they call it “that problem that you have.” And so it was empowering for her to represent women of that culture and say, you know, “Look at me, I have this disease, I'm still living.” And what's so inspiring about Jaleh is that she's still treating patients in clinic in her 70s with metastatic disease. I mean, she just blows me away.

We had two African American women who participated. We had an Asian American woman, a Hispanic American woman. So, it was just really important for us that when people looked at the final project, any patient could say, “That person's just like me.”

Jamie DePolo: How many years has this been going on now?

Beth Fairchild: So, we are just kicking off our second year. The Serenity Project for the last year, as I said, was named for Keith's wife, and we kind of want to just honor that, and that project is complete. And so this year we're continuing the same principle, but we're changing things up a little bit. And it's just called This Is MBC with a hashtag in front of it [#ThisIsMBC]. So, METAvivor has had a longstanding partnership with Eisai, who funds, they were actually our first corporate sponsor, and we've had a great relationship with them. And they created the This Is MBC campaign, and we are making this year’s photo project as part of This Is MBC.

Jamie DePolo: I see. I see. Have you selected the participants for this year's project yet, or where are you in that?

Beth Fairchild: The application just closed on the 17th of January. We had 124 applicants this year.

Jamie DePolo: Wow.

Beth Fairchild: Yeah, we have our work cut out for us. You know, it's difficult because we want to maintain the diversity, and we can only do 10 or 12 people, so narrowing that down is going to be a challenge. But we hope that the people who are selected have a wonderful experience, and of course, anyone who's not selected, we hope that they will support the campaign and apply next year.

Jamie DePolo: I'd like to talk a little bit about the participants and their reactions. Now, you were also a participant in the first year of the project. What have people said to you about it? Did it change anything for them? Did it make them feel different things?

Beth Fairchild: I definitely think that it was emotional for a lot of them. The one that stands out the most is Sheila McGlown — and she might fuss at me if she hears this podcast because she's since gotten married and I still call her by her pre-married name — but she didn't know how to swim and was terrified of the water. And I promised her that we would be right there the entire time. And so her photo, she's very near to the surface, the photo's beautiful, but she always had someone holding her hand. And she said that the experience just made her realize that despite what she was going through with metastatic breast cancer that there was always someone there for her and that she always had support and that we would always hold her up. And that just really, it just really touched my heart that she got that experience from that and that we were able to, you know, help her overcome this fear that she had and give her a beautiful memory and a beautiful photograph.

Jamie DePolo: Oh, that is lovely. Now, I know there was a large display of some of the photographs at the 2017 San Antonio Breast Cancer Symposium. If somebody wasn't there and wanted to see some of the photos, I think you have a calendar, is that right? Is there a way for people to see the photos for the project?

Beth Fairchild: Yeah. So, METAvivor has a calendar that we produced. It's a 16-month calendar. It's available on our website for a $35 donation, and that includes the shipping, but we haven't released all of the photos yet. Each model had a month, so we roll out their content over each month. So, not all of them are available online. If you want to see them in their entirety, you have to get the calendar or just watch our Facebook page for the content to roll out. And then you can also go to METAvivor.org and find a link to the story. So, it's more than just photographs. There's also videos and interviews and some behind-the-scenes stuff that you can find on the website.

Jamie DePolo: Oh, okay. Very cool. Very cool. Now, what kind of reactions have you gotten from nonparticipants, like people who come across it or see the calendar or get told about it? What have other people said to you?

Beth Fairchild: So, it was really amazing being at San Antonio. I wasn't sure what to expect. But Eisai did a beautiful job producing the booth, and I was able to be there for a couple of hours on site. And some of the people that came through, I mean, you know San Antonio Breast Cancer has patients, advocates, oncologists, researchers, and there were — I mean there were people that walked through that were just in tears, that were so moved. Because it was not only the photograph, but it was a little bit of the patient's story underneath their picture. And so to be able to kind of get to know the person that was looking back at them and see how these doctors and researchers were just moved to such great emotion, it let us know that we were really on the right track with the work that we were doing.

Jamie DePolo: That's incredible, and just so people can get an idea, the display at the San Antonio booth was pretty incredible because, if I'm remembering right, all the photos were extremely large, I think like 3 feet by 4 feet or some even larger. And they're full color, and they're just so very striking because they are amazingly colorful with the paint. I think Ren did an amazing job. I know some of the people I talked to said she, as you said, got their story or asked them what some of their favorite things were. And so some people look like animals, some people look like superheroes, and it's just really incredible. So, it was a very striking display. You did kind of have to stand there and take it in for a few minutes as you processing what you were actually looking at.

Beth Fairchild: Right, and you know, that was another goal of the project. You know, when I was diagnosed with metastatic disease, it was a very isolating feeling because I didn't fit in with a lot of the early-stage patients, and a lot of the early-stage patients didn't want to connect with me because, let's face it, at the end of the day, I'm their worst nightmare. No one wants to become metastatic. And I just felt so alone and overlooked, because every source that I reached out to had very little to offer the metastatic patient. There was information there, but it was so small and insignificant. And so I wanted people to pay attention to these folks living with metastatic disease.

You know, early-stage cancer patients — and not just in breast, but any early-stage cancer — they're celebrated in their survivorship, and as they should be. And those who go on to metastasize and die are often overlooked until the time that they pass away, and then we celebrate the lives that they had lived. But we need to be celebrating people living with this terminal illness always. We should be lifting them up while they're still here, honoring them while they're still here, appreciating them while they're still here. I mean, to get up every day and look in the mirror and know that you are facing your own mortality day after day is a huge deal. And I think these photos make people stop and recognize that they're not just number, they're not just a patient, but they are a person with a story and a life that's worth living and fighting for.

Jamie DePolo: Yes. That's absolutely accurate. I have one more question for you. I'm curious for you personally, as somebody who has sort helped conceived this idea, who was a part of the idea, has watched the reaction to the idea and the project, what do you feel you've gotten out of the project, or what has changed for you because of the project?

Beth Fairchild: Well, so rewind a little bit. When I was diagnosed, my mets were pretty extensive. It was in my pelvis, my entire pelvis was fused together, and every single bone in my body and in my liver. And I was told that even with aggressive therapy I'd probably live about 2 years. And I, you know, I went past that 2-year mark and I realized that, you know, that today is for the living, today is for life, not for self-pity or sorrow or sadness. And while that's there, you know, I'm constantly losing friends, I do think about my own mortality, but I want to use the time that I have left to do good for other people and to make other people feel well. And that's my purpose with this.

I mean, there are so many different arms of the project, but my goal, especially now as I'm thinking about what our 2018 campaign is going to look like, I want to bring patients on set. I want to offer them, you know, a luxury experience, a relaxing environment, good healthy food, beautiful photographs that they can take back to the friends and family, a story to tell. I want to bring patients together on set, not just one at a time, but several patients at a time so that they really are immersed.

One of the things that is difficult is that you may connect with someone in a support group for an hour and then you go home and cook dinner and play with the kids or whatever. Or maybe you chat online with someone and then you have to close your laptop and do chores. I think that it's so important to offer just an immersion where patients can have that peer-to-peer support for 3 or 4 entire days of togetherness because it's very difficult to compartmentalize this disease. And so for me, what I get out of it is doing good for other people and offering other people just a fantastic experience. It's turning something really crappy into at least a couple of days of fun. And hopefully, they forget about having mets for, you know, however long that they're enjoying themselves or in the pool or being photographed.

Jamie DePolo: Wow. That's beautiful. That's beautiful. I don't really have anything else to say because that's amazing. And I want to thank you for joining us. I'm so looking forward to our next podcast when we're going to talk about nipple tattooing and also, I think, touch on some of the scar camouflage and the permanent makeup because I know eyebrow loss and things like that are a big problem for women when they're undergoing chemotherapy. So I'm looking forward to that podcast as well.

Beth Fairchild: Right. I'm looking forward to it. I realize that there are so many people that don't understand that areola complex tattooing is an option or that tattooing their eyebrows back on after chemotherapy. That was one of the things that, you know, made me feel like me, was I had my eyebrows tattooed before chemo. And so when my hair came out, I still had a face shape! It made me feel like me, and I love that I'm able to give back, and so I'm excited to talk further with you about it.

Jamie DePolo: That's so great. Thank you so much, Beth.