[I met today’s guest blogger at her SCAR photo shoot in DC this past spring when the cherry blossoms were all abloom and decking out DC for its annual festival. How. Very. Apropos. Methought as I watched this beautiful, courageous, WAY TOO FREAKING YOUNG woman bare her S.C.A.R.s for the camera. At first glance, Eliza’s bright blue-eyes distracted me from the fresh red “angry scars”—as she calls them. Her absolute reality of surviving cancer is as different from mine as my scars are from hers. Mine have faded a bit, as I’m a wee bit (ok, OK… she’s exactly HALF my age but TWICE me in wisdom and stature) older than my younger survivor sister. Mine look more like Japanese symbols for WTF? and are therefore not nearly as angry—though I definitely see red when I see hers. I’ve read before that “the fragility of the cherry blossom is the fragility of human existence.” This was just poetry before I met Eliza. She is currently the youngest of the SCAR girls. Eliza just finished grad school in May and turned 23 in June. Oh, and is planning a wedding. While fighting cancer in her spare time, after being diagnosed earlier this year at twenty-freaking-two. She calls herself an anomaly. I just call her awesome. As I’ve gotten to know Eliza I’ve come to see that beneath that beautiful pale skin is fierce hope unfading, which the sunlight dancing upon it only highlights.]
Guest Post by Eliza Hewitt
First of all, I should probably state that I’m only 23, a fact that I hope will shock anyone who feels that they are too young for breast cancer. Before my diagnosis, I was your average grad student working four or five jobs to avoid going further into student loan debt and working out the plans for the wedding of my dreams.
The discovery of my cancer has a tragically humorous story behind it. July of 2011, I decided I was fed up with my breasts. They hadn’t grown since middle school so I resolved I would subject them to a breast augmentation surgery. With a coupon for a free consultation in hand, I dragged my fiancé to the plastic surgeon’s office. I remember seeing a placard addressing the office’s policy on insurance covering the surgery if it was for reconstruction. So, as I’m sitting there waiting to meet with the doctor about a boob job, I remark to my fiancé, “Man, wouldn’t it would be great if I got breast cancer because then I wouldn’t have to raise the money for this boob job?” BOOM. There. There’s the awful punchline. I was a baby then and had no idea that the idea I said in jest was really a terribly callous joke that would come back full swing five months later.
Sitting on the exam table, the doctor found a pin prick of a lump on my right breast. He raised his eyebrows and asked if I knew about this. A part of me was embarrassed that my body could have something that could prevent surgery, especially since my regular doctor had not found anything during my annual visit two months prior. So I lied. “Of course, I know what that lump is,” I said. He told me to get it checked before the surgery plans could progress. I said that I would but already my mind was thinking that I would have to get back to work. Besides, I was 22. The world was at my feet and it was probably some dinky little cyst that would fade back into my body eventually.
So I sat on my knowledge of the lump for five months.
I filled my schedule with work and classes to avoid having to think about what the lump could be. In December of 2011, I had an unrelated surgery on my tailbone and a few days later, I started finding blood in my bra. Then, my skin felt hot and I noticed that the lump felt bigger. Oh no. Now, I’m going to have to call my doctor and admit the truth and growing evidence in my boob case.
Five months. It didn’t seem like a big deal.
In the end I couldn’t face telling my doctor’s office that I had avoided getting my lump checked out and now my boob was being weird, so I turned into a five year old and asked my mother to call. As she was describing my symptoms, it began to sink in how idiotic it was to think if I avoided something that it would go away. I call it the Ostrich Solution to life’s problems.
Five months. Is. A big. Deal.
The urgency in planning an ultrasound and then an ultrasound guided biopsy on the same day told a story that sent chills up my spine. When the technician slid her magic wand over my right breast, I thought someone had dropped a river pebble in my screen. There was a big black blob smack dab in the middle of my screen and I knew then that it was cancer. It had to be because nothing else can look as sinister. A week later, we got the official news. At 22 years old with classes to pass and weddings to plan, I had breast cancer. It was triple positive, meaning that it loved estrogen and progesterone and for dessert, it was partial to HER 2.
A week after my diagnosis, I had a bilateral mastectomy. I was my breast surgeon’s youngest patient. The night before my surgery, I wanted to see mastectomy scars. If I was going to have to wear the scars for the rest of my life, I wanted to know what I would see in the mirror. What I found was The SCAR Project. With each picture, I found stoic, resolved women who dared me to think them weak or pitiful because of their scars. These women were above their diagnosis and I took heart seeing their strength, even as my soul cried for all the beauty affected by breast cancer. It helped me through the night, the surgery, and the breast surgeon’s finding: because of lymph node involvement, I was upgraded to Stage 2B.
A few months later, I fell into a deep recess of my former life and couldn’t bear looking at myself without the mirror being entirely fogged up. I emailed David Jay, never daring to hope that he would respond back. I had just gotten involved with the movement to bring the SCAR Project to DC and felt that my contribution would be in the background. I was satisfied knowing that I would help in this way. But David did email me back and the world opened to me again. He asked if I wanted to be photographed. I cried when I thought that anyone would want to take a picture of my scars that I despised even if they meant I was surviving. Here, my poor body was doing all it could to surmount the effects of chemotherapy and I could only see them for what wasn’t there.
When I met David in DC, I could barely breathe from the expectation that he would change his mind because as a 22 year old, I felt I should have had a youthful, unabashed spirit that wasn’t facing a life threatening disease. Had I never been diagnosed, I might have felt like a model off to a photo shoot.
David told me my scars were beautiful. At first, I rejected this thought thinking maybe he couldn’t see how harsh they looked in the light. But as he took picture after picture, I started to realize that my scars were nothing to be ashamed of. Yes, they made me different from other women my age, but they also made me more resolute and strong like all the women who had photographed before me and given me strength the night before my surgery. It is still hard to look at myself sometimes. I would be lying if I said the opposite. But through my picture and my involvement with the DC exhibit, I have made peace with myself and my scars. Because our scars are there to remind us of the times in our lives that are important to remember and they paint a story of not just survival, but living.
Follow Eliza’s Adventures With Cancer aka her blog HERE.
Check out the story the NV Daily did on Eliza HERE.
[When I first saw my friend Sara’s SCAR portrait it immediately rendered me at a loss for words, which is not an easy thing to do. I mean, I may be crazy shy, but I typically have at least 23,587 words on the tip of my tongue at any given moment, all raising their hands like Horshack, screaming out: “Ooh ooh choose me!” However… they all stood still like they were playing the quiet game or something when I saw Sara’s SCAR portrait. I. Love. the Beauty. And the Bold. Which bursts forth from her picture like it’s rolling on the floor laughing out loud, and maybe even peeing a little, IN THE FACE OF CANCER—and—Cerebral Palsy, to boot. That’s how badass Sara B. is. And that’s why I couldn’t wait to finally meet her in person at the recent SCAR Project DC kickoff cocktail party. And that’s why I can’t wait till you get to meet her here as well. And that’s why I’ll just sit down, maybe grab a cup of espresso with a shot of Baileys, and let her hijack the blog today and tell you her SCAR story in her own words. With Sara’s permission, this is a repost from her blog, “Ready, Pink, and Able” which you can check out and follow HERE.]
Guest post by SCAR girl Sara B.
Exhausted. Actually, I’m in the spacebeyond exhausted.
That’s what I feel. I have been worried about this shoot and its implications for 3 weeks. I want to share the experience, and at the same time, keep special moments for my heart alone. I don’t really want to talk about the experience, and have been telling my friends that they have to wait until I’m ready to talk. The only reason that I’m blogging so soon is that I’m afraid that if put off, it’ll never be done.
What can I say about this day? I had a nightmare the night before about breast cancer and mastectomy scars, and then I shook for the longest time, I didn’t think that I would see the end of this day. I kept hoping that David Jaywould call me and cancel. I’m not that strong. Didn’t feel brave –just annoyed, fearful, and worried. I also knew that I wouldn’t back out of it; I see things through to the end. When I make a commitment, I believe in keeping it. It’s just the way I was made…When I’m in, I’m all in.
When David got here I announced, “It’s ME!!” He replied, “I know!!” as he kissed me on my cheek. OK. All ice melted at that point. David did his thing as he looked around, and I just tried not to faint or vomit.
Congratulate me. No fainting or vomiting!! AND you’ll be amazed. Taking off my top was pretty easy. I am NOT kidding. When it was time to take that part of this journey, I was ready. Who knew? Well, David did! He told me repeatedly over the last weeks that it would be fine. He was right. However, it was much more than fine. I was brave and David was patient. He knew how to wait for honesty. He waited for me and fearlessly took the shots. It was a privilege to be part of those moments. That shawl slipped down so many times; I didn’t worry about it. I was completely at ease. I accepted myself.
Breast Cancer is a serious subject. It’s a beast. It stole my breast. I didn’t convey any of those things during the journey that David and I took together. I laughed. Yes, I know. I’m just different. I laughed…and laughed…and laughed some more. I thought about it, and started to panic every so often during the shoot. I thought, “I shouldn’t be laughing. Breast cancer is a monster. Sara, don’t laugh.” Then, I would try to swallow the laughing and look to the camera. It was so unnatural! You can’t be yourself while you’re trying to swallow who you really are. The truth is that while breast cancer is horrible, and I have grieved the loss of my right breast, I don’t live in that place in my heart. The truth, if I’m really honest with myself, is that Sara laughs…she enjoys the freedom of laughter. I really do embrace my faith which tells me that I have been made in the image and likeness of God (Gen 1:26). David, in his wisdom, just said, “It’s OK to laugh, go ahead.” Those moments, when David gave me permission to be happy…honestly joyful, those were my favorite.
If you’ve read my blog before, you remember that I’ve said that I never thought I would reveal myself in an intimate way to any man outside my spouse (if I ever marry). I just know instinctively that I can only be vulnerable like that if I’m in the presence of love. That is still true. The shoot didn’t change that at all. You see, when I looked at David’s face, I saw love reflected back to me. Now, make no mistake here. There are many different shades of love. I’m not in love with David nor he with me. (Although, I can certainly understand why women would fall for him.) The love that I saw in his face was his humanity truly connecting with mine. I know I didn’t imagine it. It’s probably one of the most wonderful times of my life. It brought tears to my eyes later. I had been loved, and not in any way that I expected. I never thought that I would meet a fashion photographer, let alone that I would find love in his face. Yet, it really happened. In fact, the love in that room helped me survive the moments in between the shots, when I needed to wait for my muscles to relax. I couldn’t stay in the same position for very long, and I just begged to be allowed to move. Cerebral Palsy is betrayal of the highest order. My body’s movements and spasms are often not voluntary, and pain is a frequent albeit unwanted guest.
The only troubling part of the afternoon happened when we finished. I sighed and exclaimed,”We’re done, and I’m never doing that again!” I was wholly unprepared for David’s response. He explained that if he didn’t get what he wanted in the shots we had, then we would shoot again. Umm…David…I never said that I would agree to do this again. My heart sank through the spokes of my wheels. I was convinced that he must not have gotten what he needed. I had let him down. I had let all people with disabilities down–never mind myself and the two friends who were present. Talk about pressure. Let’s be real. We had an incredibly talented photographer and we had me. If one of us had ruined the shoot, who would you bet did it?
OK. so it’s all moot now. Just look at his photo. Look at the abandon with which I threw back my head. Breast cancer took my breast, and it very well may take my life someday. It will never own me. I am free. Thank you, David, for being my witness.
In the last few years of Jolene’s life, she was awed by the gratitude of these flowers not realizing it was they whose soil was most enriched by all she taught them with her honesty and appreciation for even the minutiae of life.
Her wit and charm endeared even the weeds to her, but she would not succumb to their negative forces. She continued reaching for the sky and striving to make something beautiful out of the storm that became a hurricane; sometimes subsiding, but never completely diminishing. She opened wide her leaves and petals to share the remnants of the storms’ damages with the world as part of The Scar Project. She wanted the spotlight of the world to shine down on this garden and see that not one ribbon grew in the garden. It was a garden where only flowers grew who had been changed by the blades of the gardening sheers and sometimes even pesticides that would cause petals to shed from the stamen. In this section of the garden, every flower was merely a seedling and Jolene was one of the youngest to sprout here. In her own words, she felt it was the place where her voice would still be heard after she was gone.
Thank you to everyone who turned out for The SCAR Project LA Cocktail Party Fundraiser kick-off event on May 5. It was a beautiful evening and a fantastic kick-off event toward bringing The SCAR Project to Los Angeles in January. We believe it will be one of the most beautiful meaningful art exhibits to grace the City of Angels.
“I was thrilled with the SPLA kick off party,” said SCAR LA Producer Diana Haye, heading up the committee to bring the exhibition to LA “to honor the 12 women I have lost to breast cancer and ALL women who have been affected. I can think of no better way to honor the women we’ve lost and the women who are on the battlefield with cancer. I have never been so profoundly moved by anything as I have by The SCAR Project.
“We are well on our way to getting the word out in LA, said Haye. “We had a very diverse crowd at the kick-off, all extremely supportive and profoundly touched by The SCAR Project documentary: Baring It All and the SCAR girls who attended the event and shared about their SCAR Project experiences. I would have to say that the event went better than anticipated. No glitches! Fabulous people and fabulous food.”
Special thanks go out to our gracious host Tom Zahlten, caterer Michael Curry for the amazing spread, Lucy Svimonoff for providing sign language interpreting, Style Network’s Taylor Hennessy for gracing us with her presence and introducing the Emmy nominated SCAR Project documentary which she was instrumental in the shaping of for Style Network, the SCAR girls who came and shared their stories, and Jacquie McColgan for being such a ridiculous generous hostess of the SCAR girls (and me) while in town. Also SCAR girl Jolene’s beautiful mama (Denise, pictured above) made a very special guest appearance and said a few words.
A very special moment of the evening as she honored her beautiful Jolene, who recently passed away in October. Jolene was one of the youngest SCAR girls. She was only 17 when she was diagnosed. She was only 25 when she passed away. That is the absolute reality of why we do this. This bitch of a disease must end.
(Rest in peace, beautiful Jolene… although, I rather picture you flying or cloud surfing.)
Besides raising seed a little money for the expenses involved in bringing the international exhibition to LA in January, of which the proceeds will benefit Breast Cancer Angels of Southern California, both shipping costs to LA and catering (skills not food supplies) for the Gala opening were donated. Also, in case you missed this first cocktail party/screening of “Baring It All” a few more were booked at the kick-off event and are coming soon… so stay tuned at The SCAR Project LA group page on Facebook.
In other news and on other cocktail napkins, the cocktail party kick-off for The SCAR Project DC is just a few weeks away. David Jay and some of the SCAR girls will be speaking at the event, with DC news anchor/survivor Kristen Berset as mistress of ceremonies. Guests at the kick-off event will have the first opportunity to purchase tickets for The SCAR Project DC exhibition, before they are released to the general public. There will be SCAR Project books and “Baring It All” dvds for sale.
There are only a few tickets left for The SCAR Project DC cocktail party kick-off on June 20th at The Dunes art gallery in Columbia Heights. For tickets, or more info about the DC exhibition, check out The SCAR Project DC group page on Facebook.
The SCAR Project DC exhibition will kick-off breast cancer awareness month 2012 from our Nation’s Capitol. “Our goal is to make a strong statement by showing our country what breast cancer really is all about,” said The SCAR Project DC producer Donna Guinn Kaufman, who is also a breast cancer survivor, and founder of Kill the Cancer Beast Foundation, the organization spearheading production of The SCAR Project DC exhibition. “We hope to change the way that people look at this disease, and as such get people to take the action that is needed to end it!”
Cheers to that. And here’s to the DC cocktail party kick-off, and the upcoming exhibitions from DC to LA.
[When I produced The SCAR Project Cincinnati exhibition, so many people came up to me in tears, telling me how much the SCAR portrait of “the girl with the red hair and a tear” moved them. Getting to know Sarah and many of the SCAR girls (as many of them call themselves) this past year as I’ve begun coordinating exhibitions and consulting with those trying to bring The SCAR Project to their cities/countries, has been one of the most beautiful things in my life. It is my great honor and pleasure to introduce you to “the girl with the red hair and a tear.” Obviously her portrait wrote the book on the whole picture being worth a 1000 words. But here are a few of the words behind her SCAR portrait. Her own words: my friend, survivor sister, SCAR girl, and guest blogger, Sarah.]
“It looked . . . ” my surgeon twisted her face and looked towards the ceiling, searching for words to describe it. “Well . . . it looked like a flower.”
I don’t know if that made the news more, or less, disturbing.
The growth, blossoming in the ducts of my right breast, could be compared to something beautiful.
I don’t know why this was first question that fell out of my mouth when my doctor told me I had cancer but – before my brain could wrap itself around that word – I needed to know what this thing looked like. What was I battling? Getting a vision of something usually provides some context. Instead, I only got an image of clubbing some innocent peonies. This really wasn’t going to be much good, in terms of gearing up for a fight.
This was the beginning of nine months where cancer consumed my life. I know that I am lucky that it didn’t take more. Though I was diagnosed DCIS (ductile carcinoma in situ) and staged at zero, the cancer was all over the place like weeds in an untended garden plot.
Not one doctor could tell me what causes breast cancer in a fit, otherwise healthy 28-year-old, or what causes it to be so aggressive in younger women – in my case filling up the ducts and heading for my chest wall. After three excisions, and an argument between my radiologist and her MRI technicians, they continued to find more cancer, through three quadrants of my right breast.
Each new discovery gave me less time to make decisions, but I knew a mastectomy made the most sense.
All of my doctors were women and each one felt like some strange mother figure that was going to take action to make everything better. My reflex to this maternal agitation was to beg for more time. I also wanted to see more than one plastic surgeon about handling my reconstruction to figure out what my options were.
The first doctor I saw entered my exam room with a small cadre of un-introduced interns. I had a list of questions, all related to different reconstruction methods. He gathered some of my fleshy stomach between his fingers, examined my exposed breasts, and simply stated that there wasn’t enough there to reconstruct even one breast to it’s current size. But maybe with the addition of an implant?
The waiting room of another doctor contained a bowl of chocolates bearing the office logo. I snuck a few into my pocket before my partner and I were ushered into an exam room that looked more like an upscale hotel room. We were met shortly by a youngish looking doctor. Slick, attractive, but warm and kind. He didn’t take my insurance. We weighed options and ate chocolates as we rode the elevator back down to the ground floor.
The reconstruction surgeon I chose came recommended by a friend. She only did medically necessary breast surgery and she also worked on hands. She had a southern drawl. She spoke to me, not at me. She included my partner in the discussion since I had seen fit to bring her there. I told her that I didn’t necessarily need to have the whole breast removed, but I was afraid not to. When I eventually decided to remove my healthy breast as well, she said that she would do the same thing. I knew I was in the right hands.
Frightened, for my health, longevity, and lack of symmetry, my left breast was removed prophylactically less than six months after the cancerous right one. To get rid of the cancer, even between the discovery of DCIS in locations that weren’t originally identified, and a scare that resulted in a PET scan and a bone scan, it only took nine months. The reconstruction took far longer to be finalized, well over a year, and this is without the addition of the best approximation of nipples that money can buy.
I did it because wanted to look like myself. I wanted to fit into my clothes. I wanted cleavage. Why not? I had it before. I’ve had breasts since I was twelve years old, and it was my body, damn it. It had taken me 28 years to get comfortable in this skin. And now? Now I was angry that the most rational decision I could make led me to want as little change as possible.
Later, after the cancer was gone, after I looked normal in clothing, I went into a six-month funk. I would never truly look normal. Changing at the gym sent me into a cold sweat. Buying bras was a nightmare. Forget about looking sexy when I had lost all feeling at the surgery site.
I know those are superficial concerns, but still they are very real. I don’t have children yet. Can I have them? And without the cancer returning despite my best efforts? And surely if I was so blessed to give birth the first person to tell me “breast was best” would be met with a fist to the jaw, I’m certain, before I even realized what was happening. And my partner, should she choose it, would be stuck with this body, these alien protrusions from my chest for the rest of her life. It was not life or death, but it was a kind of suffering that made me, and on a bad day still makes me, burst into tears on a whim.
The SCAR Project shows this less than pretty pink-ribboned side of breast cancer. It reveals the new reality young women face, having confronted breast cancer. They look at you from their portraits as is . . . reconstructed or not . . . alive, giving the big “fuck you” to cancer, but scarred. Some have even used the word “butchered” to describe me and the other women in the photos.
The SCAR Project photos give voice to the suffering that is done in silence. Every cancer patient is applauded for staying positive, but sometimes that is too big a burden to bear. There is a real-ness in these photos, as the camera captures milliseconds of a long, multi-round fight. There is room to breathe, to expand the excised chest – because for a few moments it is only you, and that camera, and the memory of where you’ve been and what lies ahead.
[As Facebook has deemed some images of The SCAR Project to be inappropriate, and as such, has consequently removed them from the The SCAR Project FB page, one of The SCAR Project girls has written an open letter to Mark Zuckerberg on her blog. With her permission, I’m cross-posting it here, featuring Sara as my first guest blogger on The SCAR Project Blog.]
An open letter to Mark Zuckerberg
Never in my wildest dreams did I imagine the SCAR Project would reach so many women. Never in my wildest dreams did I imagine it would become a GLOBAL influence. There have been a plethora of articles written – all over the world. This project is changing lives…it is empowering other breast cancer survivors…other people who have had their lives changed by breast cancer…it is allowing the generations who had to suffer in silence stand-up and say, that is me…that was my mother…that was my grandmother. I often have tears welling up when I read the comments of the women who are appreciative to FINALLY see someone else like them…who say the photographs gave them the strength, peace, comfort… I am overwhelmed because my hope has been realized tenfold.
How did this project gain momentum? I have to believe it is in large part because of Facebook. The first exhibition was in NYC in 2010 – at that time, I remember the Facebook page followers numbered in the four figures. Today, as I am typing, the SCAR Project’s page has over 22K followers.
I am writing to ask you to please step in – the SCAR Project has received multiple warnings about content. At this point, the photographer, David Jay, has decided to remove the photographs rather than risk the page being shut down. I truly believe, Mark, you must know someone who has been affected by breast cancer. I believe the days of anyone not knowing someone changed by breast cancer are long gone. Think of the person you know, maybe it is a relative, maybe a friend – consider how it must feel – having to cut off a body part, a body part society tells us is the most important part of being a woman. Imagine the isolation, the fear, the grief, the anger…all of these emotions and feeling as if you are all alone. The SCAR Project has changed this – the SCAR Project has allowed these women to see their strength, to find their beauty in this strength. In order for the SCAR Project to continue helping these women, the photographs need to be available.
Facebook has the opportunity to help change the world in a positive way – by allowing the SCAR Project to have an open forum to continue reaching men and women around the world. Please, take a moment to look the SCAR Project’s Facebook page – read the comments. There is no denying the power and impact it is having on the many who view the photographs. Take a look at the SCAR Project’s website to see the actual photographs – there is nothing sexual. It is simply showing the world that breast cancer is, and always has been, so much more than a pink ribbon.
Thank you for your time and consideration~