February 28th, 2017
| Survivor: Breast Cancer
By now you've probably seen the articles and photos of the sixteen models who bore everything at New York Fashion Week’s first-ever "Exposed" event, a show by AnaOno for #Cancerland. But what you probably didn't realize was that they weren't models at all - they were survivors, fighters and previvors who risked it all to raise awareness for metastatic breast cancer. So we wanted to know, who were these non-models, and why does the world need to start caring about their stories?
"We live in a world of conformity," Mira Sorvino opened the show saying. Co-creator Champagne Joy expanded in a private interview with IHadCancer to say, "There is an arbiter of what people should look like and then we all follow suit, and what sets this apart is that we're going in the other direction. We're becoming the arbiters of what should be considered true beauty, which is your own individuality." (More from Champagne here).
AnaOno Intimates, the company behind the runway lingerie line, takes on the challenge of designing garments for more than just the traditional breast cancer patient we're used to associating with Pink October advertisements. Their clientele are people of all shapes and sizes, all varieties of treatment choices, for anyone who hasn't had breast cancer, for those who don't need a specific gender identity. Their line is about restoring identity and community through lingerie, full stop. This show was the perfect extension of that mission to show how breast cancer is ugly, beautiful, liberating, isolating, and unifying by using bodies that visually demonstrate that multifaceted reality.
We asked a few of those who walked in the show what their journey of self-love has been and how they would answer to why their bodies belonged on the runway now more than ever. Each one of them has a story that cannot be heard just by looking at a photo, no matter how viral it may go - and want to share, celebrate and honestly listen to those stories.
Aniela McGuinness | Co-Founder, Cancer Grad
Bilateral Reconstruction, diagnosed stage I days before a preventative mastectomy due to BRCA+ mutation
"Interestingly enough, I became more comfortable with my body during and after cancer than before. My career prior to cancer was as an actress/model, which valued my looks over anything else and people had NO problem telling me I wasn't "enough" in every way (not pretty enough, tall enough, young enough, old enough, good enough, etc.). I thought that if I ever truly felt that I was ENOUGH it meant I was narcissistic. Cancer helped free me from that. I was able to witness how valuable and beautiful I really was without all of the things society and the industry put value in: hair, nails, health, breasts. My body loved me and showed it by healing over and over again. But don't get me wrong, I still have moments where I catch my reflection and have to reassure myself that, "Yes, even with scars and no nipples, I am enough."
There is a huge difference with the performance of confidence on the runway and in real life. Normally, I am not covered in gold glitter strutting around in three-inch heels and topless with crowds of people cheering me on. As I write this, I am in baggy sweatpants, a yellow Cancer Grad t-shirt and Toms shoes. I love who I am, but I don't normally feel sexy. That night, I felt beyond sexy. I felt powerful."
Candice Smith | Competitive Fitness Athlete, HR Professional
Bilateral Reconstruction, diagnosed DCIS
"At first, breast cancer affected my confidence because I've always had low self esteem despite performing on stages since age five. After my mastectomy I tried to stay optimistic, but I was concerned that I wouldn't be able to do all the fitness modeling and competitions that made up my career. After seven surgeries with a top-notch surgeon I felt I looked as normal as I possibly could -- I mean, they looked as perfect as they once were when I had breast implants. Something more important happened through that surgery, though. I started to move past being defined by my breasts and started being grateful for simply being alive. Now I like to say that every morning I open up two gifts: my eyes.
On that runway, Dana made me feel like a Victoria's Secret model. I felt beautiful for the first time in a long time, and there was so much empowerment with so many amazing people... I felt happier than I had in a very long time. I still do competitions and fitness photo shoots-- in fact, I have a big one coming up next month. Am I nervous? Yes. Will I look the part? Will I be ready or feel confident? Who knows. I just know I'm blessed and try to always practice self love because God has me here for a reason. He helped me catch my cancer early, so I know I am here for a reason, and I believe it is to talk about early detection and to be a light and voice for others."
Chiara D'Agostino | Blogger, Model
Reconstruction to Explant - Bilateral Flat, stage IV metastatic triple negative breast cancer
"I felt very comfortable in my skin before I had a mastectomy; my hair was the length and color I longed for, I was eating healthy and I was working out five times a week – I loved my body and felt sexy. Then I got cancer and had a single mastectomy – when I looked at my reflection in the mirror I fell to the ground and cried for a while, devastated by my mangled body. Six months later my other breast was removed and I had reconstructive breast surgery. I was convinced I needed round mounds protruding from my chest to feel feminine, but I hated the look and feel of my implants. Those gummy bears caused several infections and further complications and only after I had them both removed do I finally feel comfortable in my body again. I miss my girls, but now that the silicone is off my chest, I feel less invaded and like my natural self again.
When diagnosed with stage III triple negative breast cancer in 2014 I became very depressed and anxious; antidepressants and anti-anxiety medication made a big difference. While NED, I was off the meds, but when the cancer spread, I immediately started taking them again. I still experience bouts of depression and when I do, I’ll journal, connect with friends, share in support groups, meditate, walk in nature, play with children, help someone, pray and/or treat myself to a pedicure/movie/meal. If I can afford it, I’ll spring for Reiki, energy healing or massage - good vibes and healing touch are therapeutic to me."
Maggie Kudirka | Advocate, Dancer
Bilateral Mastectomy Without Reconstruction, de novo stage IV metastatic breast cancer
"Before I was diagnosed, I was a large-breasted ballet dancer. It was hard to find ways to keep my breasts inside the costumes designed for small-breasted women, to keep them from bouncing and distracting the audience. I also had constant back pain and shoulder bruising from their weight. After my de novo stage IV terminal breast cancer diagnosis, I saw the mastectomy as my silver lining: I finally had an opportunity to get the body I always wanted.
I chose a bilateral mastectomy without reconstruction. Every time I saw my surgeon, he asked about reconstruction and pointed out that I was only 23 and that my decision could impact future relationships. I replied that I didn’t want to be with anyone who valued my breasts more than me. My surgeon said he wished all his patients had my maturity.
When the sunlight came through my hospital room window, I woke up and couldn’t stop smiling. When my surgeon came in he said I was the happiest patient he had ever seen after surgery. And why not? The source of my cancer and my back pain was gone! No more worries about costumes or leotards! Now I love my body even more than I ever had before.
As a ballet dancer, I am very much at home on stage and accustomed to dancing various roles and wearing all sorts of costumes. I am far more confident on-stage than off because everything is choreographed or scripted; there are no surprises (like cancer) lurking around the corner.
I walked in the AnaOno Exposed show in pointe shoes to show that cancer does not discriminate; that even a very fit 23-year-old ballerina with no risk factors or genetic involvement can get metastatic breast cancer. I walked for all very young metastatic women whose voices and concerns are too often ignored when research grants are awarded and innovative treatments are denied by insurance. Our needs are very different from the typical breast cancer patient. I believe it is important for every woman to have the right to choose a mastectomy with or without reconstruction and for the people in her life to respect her choice."
Vonn Jensen | Founder, Flattopper® Pride and Queer Cancer, Trans/Non-Binary Cancer Advocate
Bilateral Mastectomy without reconstruction, identifies as a trans/non-binary. Specific breast cancer diagnosis unknown
"In speaking about confidence, I must speak to my roots, both in the sense of where I come from, and in the sense of what grounds me. I come from the Pacific Northwest and because of that, there’s a certain attitude toward the world that is imbedded in me. We drink organic coffee. We talk to trees. We don’t have elective surgery.
Cancer gave me permission to alter my body surgically; it forced me to decide that I wanted to live more than I wanted to refuse Western medicine. However strange it may sound, cancer afforded me opportunities to grow into myself and to access a level of comfort and confidence that I never could have otherwise. With every bodily loss, I become more whole.
My flat chest suits me. Every cut, every shot, every slice taken out of me gave me more room to grow into myself. I had freedom to let go of the performance of femaleness because that outward marker of femininity was removed. I felt more at home than I ever had before. The suppression of my ovaries only intensified this sense. When I no longer produced ‘female’ hormones, I felt my body becoming mine. Only then did I begin to realize that it hadn’t been mine before. Although my mastectomy wasn’t intended as gender confirmation, it has become that.
After coming back from NYC and New York Fashion Week, I drove directly into the forest until I was lost. I sat by a river until the sun rose and until I had room only for the sensation of my passion, my heart and my values being aligned. I do this often - this calling to alignment - because in every way, cancer made me aware of how disjointed I had been.
My confidence is not a performance. Everything I emote is true to me because I have had to scrutinize the alignment of my body and my values until there was no question. Whether it’s on a runway, with my friends, or cradled in moss, I am within authenticity always already. My confidence is not a performance; my confidence grew where body parts were cut off. I am the summary of my loss in that loss enables me to grow larger than my physical borders ever could."
Shay Sharpe | Founder, Shay Sharpe’s Pink Wishes, Advocate
Bilateral Mastectomy with Reconstruction, Explant to Flat, two-time breast cancer survivor
"I was totally in love with my body prior to my mastectomy! However, everything changed during chemo before undergoing my mastectomy. I'm a hair girl, so losing my hair had to be one of the hardest obstacles to deal with during my cancer journey, followed by my very itchy skin turning really dark and my finger and toe nails darkening and falling off. I began to feel really unpretty after breast cancer. No nipples. Horrible breast and belly scars. Dental issues and missing teeth. Unflattering clothes and devastating hot flashes. Gaining over 60 pounds in six months. I didn't love any of these side effects.
I went on a diet prior to the fashion show and lost over 20 pounds, although it didn't matter because I still felt HUGE at the time of the show. At my heaviest I was 221 pounds, but on the day of the show, my 39th birthday, I was 190 pounds. Prior to my cancer returning, I was 160 pounds, so 190 still feels so heavy on me. But I was excited about my weight loss and tried to bring that confidence with me to the show.
I had ZERO confidence on the runway! As I walked, I kept telling myself to take off my wig and bra once I got to the end of the runway. But I didn't do any of those things. I just totally owned the moment of being in the spotlight as a young African American woman strutting this lupron/steroid weight down the runway like a champ. Everyone in the venue started screaming, lights were flashing -- it was an incredibly empowering moment for all facets of my identity.
However, that empowerment started to wilt once I saw the first pictures from the fashion show. I was blown away at how chunky I still looked. To be honest, it broke my heart a little. I felt as if all my exercising was in vain. On the flip side, I was talking to another survivor who walked the show who lost 25 pounds without trying, who thought she appeared way too skinny during the show and was unhappy with her appearance. Same issue. Different view. I guess we are all our own worst critics.
And yet, a couple days later as the runway show pictures went viral, I started receiving messages from other survivors stating how happy they were to see a woman who represented them on the runway. Especially for black American woman, who are 43 percent more likely to die from breast cancer than their white counterparts, increasing the visibility for women of color in the cancer space, being on that runway as an icon to redefining beauty for both myself and everyone participating has helped me restructure how I think about beauty and my body."
Kiku Collins | Musician
Unilateral Reconstruction, Infiltrative Ductal Carcinoma, current staging unknown
"One month after my wedding, I was diagnosed with Invasive Ductal Carcinoma. I was finally getting my life together-- or so I thought. I felt like a failure. I had lived a very clean and healthy life to make good on my vowed to prevent the disease that stole my mother, her sister, and others in our family at a very young age from taking me, too.
Oddly, what helped me get through that was being private about the cancer. It was important for me to be quiet until I knew I could and would go on. I’m not good with being the “poor thing.” I don’t need people to say their “thoughts and prayers” are with me. I needed to persist. And if I stopped to think about what my life had become, I would simply see my mother. She died from metastatic breast cancer when I was 18 years old. I wanted to continue working, traveling, playing and making others happy through music. My husband and I didn’t exit the “cancer closet” for about 6 months. I’m still struggling with my health, my body and body image, the realities of everything going on, inside and out.
Confidence on and off the runway - it’s interesting. As a performer, I take on an alter ego. She’s confident in every way. She never worries about her hair or makeup, her chops, her dance steps or backup vocals parts, her outfit, her body. She’s confident and flawless. She only exists when the lights are up and I’m “on.” The second the show is over and the eyelashes are peeled off, the dress is crumpled in a corner, what’s left is me: incredibly flawed, scars that hurt, lymphedema that throbs, bones that ache.
In everyday life, I’m definitely aware that my breast cancer affects how people perceive me. In the gym, I can see people look at my one jumping “breast” whenever I use my left pec. People look at my lymphedema sleeve and don’t seem to understand what it is, if it’s cool, or if I’m trying to get away with fake tattoos. That's all not to mention my “second” menopause - my hot flashes, my cravings, my crankiness, my loss of metabolism - contributes to who I am now. And she’s very different than the woman I was five years ago. I’m learning to embrace all that I have now, but sometimes I can see my mom in the mirror looking back at me and there isn’t much to do other than wonder where I went. Other times, I look in the mirror and I see myself and know exactly where my mom went."
Breast cancer is one of the most visible cancers in American society, but we hardly ever hear stories like the ones of those who walked the runway that night. Not everyone who walked was a breast cancer survivor; in fact, half are living with metastatic breast cancer, for which there is no cure and for which the mortality rate has stagnated for the last 40 years despite increased funds toward cancer research generally. Additionally, one walked as a "pre-vivor," meaning she tested positive for a mutation in the BRCA1 gene and was greatly predisposed to develop breast and ovarian cancer, and committed to a double-mastectomy as the single most effective means of cancer prevention.
While much of the work on the runway was about witnessing the breadth of human experience with breast cancer from a variety of body shapes, parts, and colors, the deeper ambitions of the show seek to lift the carpet on lame-duck policies that force anyone diagnosed with breast cancer to remain in limbo.
"With metastatic breast cancer, we are seeing a mirror of AIDS just before its tipping point," Champagne Joy says. "As we bury people every single day -- [people] that should have had a life ahead of them -- we're finally at a point where, if we can remove the impediments to further research and access to current cancer treatments, we can at least see this become a chronic disease and during that time, if research is put toward a cure, we could do it all."
Feeling inspired to take action on behalf of the 255,180 people who will develop breast cancer this year? Here's our guide on how to get started.
Model photos are credit to Carey Kirkella.
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