[Maybe you saw the above SCAR Project image when it went viral on FB in October of 2012. The post accompanying the picture asked: “How Many Likes? For this courageous breast cancer survivor?” Maybe you even liked it? Maybe you didn’t know it was one of David Jay’s SCAR Project Portraits? (The post didn’t mention him, The SCAR Project, or the woman’s name.) Maybe you wondered if the girl in that picture knew she got millions of Likes? (She did know, btw.) But maybe mostly, you wondered about the young woman in the photo—the 1000 words behind her picture. Today’s special guest post is by the courageous breast cancer survivor in that picture, which has been Liked and Shared and Commented on, around the world and back. If you happen to be catch one of the upcoming SCAR Project Exhibitions in Toronto or Los Angeles, maybe you’ll catch the girl in the picture, standing next to hers.]
Guest Post by SCAR girl Candice M.
Dog food, dog food… which should I get? Too many choices… Ring tone called Island Breeze sounds off in my pocket. I can’t even hear it, but because it’s called Island Breeze, I should have been transported to an Island. This is just my opinion; though my opinions never seems to take hold in ways I want them to. Technology. Hearing people always ask me if I set my phone on vibrate. I’m surprised they don’t know the answer to that so I say, “Yes of course then I put it right… down… “. At least I make them laugh. I see it’s a local number so I know it’s not a telemarketing call. Shoot, I hope it’s not the doctor. It’s too soon, he’s supposed to call, like… never. I fiddle with my hearing aid, am I gonna hear him? Oh I hear him alright. Well not the first time but I didn’t have to. He wasn’t going to call if there was nothing wrong. Silly me I thought he was going to make an appointment and meet me in the office like on T.V. Instead, he tells me over the phone, point-blank. Was that a 9 millimeter? Nope, AK-47. And there’s no dramatic fade in or fade out or music, not the whole town running in to see what was the matter, nothing just a big fat row of dog food at the pet store. Oh, Kirstie Alley if we could just go to a place where Nobody Knows My Name…
I scream. I can’t even remember what day that was. It was my daughter’s birthday, I think, or the day before. Oh fun. I also got pulled over, screaming all the way home, illegally calling my mother at the same time. Big black cop doesn’t know what to do with a screaming white girl in the middle of the ghetto but he does manage to let me know I ran a stop sign. I’m sure he loved my response, “I have CANCER what am I going to do??!?” Dumb look on his face…
“well… m’am you still can’t run a stop sign.”
He fiddles, he’s nervous, he doesn’t know what to do. Awkwardly, he slowly backs away from my crazy screaming and crying, and decided a ticket wasn’t what I needed at that time. Good for him, two people survived that day, not just one. I got what I call two chemo tickets in the following two months anyways. My head wasn’t on the road. How could I? My head was… am I going to be alive, will my child have a mother? Its amazing that I survived not just cancer but also my own driving. Yes, unfortunately for you, I still have my license. Yes it’s safe to get in the car with me, just not on days I’m diagnosed with cancer or in a chemo fog, ha!
I have angels watching over the car so don’t worry, come join me for a ride because this is one helluva rollercoaster ride. Stage III. Really?! Ok, I acted surprised, I tried not to be surprised, but I really was surprised anyways. Damned thing was supposed to be a CYST, not cancer!
The part of me that wasn’t suprised that it was so late-staged was because I had been trying to find out what was wrong with Ms. Leftyboobie since I was a kid.
Yes, I said that right, a kid… I told a doctor when I was 17 my breast didn’t feel right. Age 21, I told a different doctor that I was “leaking” fluids. Age 26, I went for a fibrocystic breast study, and no one saw a problem with Ms. Leftyboobie, really?! Then Ms. Lefty B decided to let herself loose at age 29, which led to a 6cm cancer retrieval at age 30 because I guess I was “old enough”. I don’t think I finished blowing out the candles.
Young ladies, you can and you are old enough for breast cancer, no matter what anyone tells you. I found a doctor who saved my life. He said, “I know you aren’t due for a check-up but I’m gonna check ya anyways.” I roll my eyes, oh puhleeeeze. He gets to second base, faster than anyone I have ever met… well, mostly everyone. *wink* I let him find it, I think, go, have at it, thinking he won’t do anything anways, I don’t say a word… instead, he freaks out and says, “You gotta get that checked!” I just glance at him, and with an air of boredom, I drawl almost a whine and ask for the millionth time, “Please, I want a biopsyyyyy.” He says, “Ok.” I say, “Did you just say ok?!” Doth mine hearing aid and lip reading fail me?” (I didn’t actually say that last part). He hands me the slip, I run off to a whirlwind of appointments. It’s just in the nick of time…
Because, here I am five years later celebrating my life and watching my daughter blossom into this gorgeous young lady (and no I’m not one of those parents that just says my kid is the cutest because my kid actually IS the cutest. I have evidence to back that up AND testimonials*.) I have to say going through all that and losing my breasts was devastating. But it taught me how to love myself better, to see that I’m still beautiful. I can prove it via The Scar Project. The photo you see is the very first time I showed ANYONE my scars. I had a little birdie, my breastie bestie, Jolene, who whispered to me that I could do it, and she stood by my side.
I miss her, and losing her still hurts me something good, but I would never trade meeting, loving, and knowing my Pink sisters, for anything.
I prefer to think that Jolene was reborn into this really amazing place with tons of loving people, cheese and crackers galore. I’ve met some really incredible people on this journey. It made my little deaf-brokenboobie life fuller, and worth surviving for. It opened up my eyes to a whole world that many people don’t understand or choose to see. I actually had people say to me, “I wish I had cancer then everyone would pay attention to me” and equally as shocking comments/statments. Also, I didn’t really get attention, instead, I was told by people, to get over it. Regardless, I would never want to feel so sick or so scared again, for any kind of attention.
Breast cancer isn’t a pink ribbon. It’s losing yourself, becoming so sick that your family gets shattered to pieces with you, rediscovering yourself, finding your words, discovering that hair does grow back even if curly and unruly, it does grow back. I ask myself every day could I do that again? I watch my friends doing it. I don’t know. It’s really that hard, so while you are waving a pink ribbon, instead go and really get involved. I had little to no support. Real pink ribbon support should mean help with cleaning, making meals, taking the dogs out, or helping me get out of bed on the days I was too weak to pull myself up, not just a piece of fabric or a specific color or logo. Donating money is nice, make sure you know where it’s going and what they are doing with it. But know what’s really fantastic? Food for my kid, and clean clothes too. Even more wonderful?? Someone to sit next to me for a little while so I’m not so scared.
I look over at my daughter who is sitting and reading quietly, yeah I definitely could do it again. She’s my reason for everything. I shove soy and vegatables at her. Thankfully, she welcomes the healthy food jumble that I foist upon her. She’s a beautiful soul, and a fighter too, but this is one fight I do not want her to face, and through The Scar Project, I am hoping to make that difference for her, not just to be my own voice, but to be hers too. I’m not who I was before, but I am still me (just waaaay better and sexier), and this is my new normal. I am not breast cancer and breast cancer doesn’t define me. Oh and one more thing, reconstruction is a choice. This whole “I love boobies” campaign isn’t the right path. Can’t we all say, “I love women”? That’s what we are trying to save here, right? I will end this with one of my favorite quotes from one of my scar project sisters, Keiko:
“I used to be sad about the scars that run across my chest; now I feel they are a roadmap on my journey of survival.”
*For the record, Candice is in no way exaggerating the ridiculous cuteness of her daughter. I met Sky at a SCAR LA fundraiser and fell immediately head over heels over this enchanting child. Holy crap, we all did. It couldn’t. be helped. She’s that stinking cute.
Guest Post by Lauren Culpepper
[Lauren is the production manager for The SCAR Project, David Jay’s right hand, my SCAR Project sidekick, not to mention, the most lovely soul to work with.]
Since The SCAR Project began six years ago, David Jay created a Facebook page for the project. What began as a small page of a few supporters has now become a thriving group supported by over 33,000. David has used Facebook as an immediate way of communicating directly and effectively as he continues his work with The SCAR Project. For years Facebook has randomly and periodically taken down images and banned David’s personal account which prevents him from posting.
It has been an unbelievably frustrating challenge. Every time this has occurred, there is no one at Facebook to contact in order to gain clarity on the image removal or ban. This has turned Facebook into a looming “big brother” for The SCAR Project, not knowing when it will strike again.
This time, however, a woman reached out via Twitter. Scorchy Barrington, currently stage IV and undergoing treatment, created a petition at Change.org on behalf of David and The SCAR Project that created a massive ripple effect with over 20,000 signatures. Two days after the petition was posted, Change.org got behind the petition, Facebook’s VP of global policy requested to speak to Susan and David, and a conference call was set up with Susan, David, Facebook, and Change.org. It was an extremely beneficial opportunity to listen to one another and have a chance to communicate directly. The following week, Change.org, Susan, Facebook and David exchanged emails editing what would become the new policy that you now
see on Facebook’s policy page.
While in many ways the new policy is a huge victory for breast cancer survivors, whether or not Facebook will continue to allow certain images to be posted on The SCAR Project’s page remains to be seen. The new policy is certainly improved, but also leaves plenty of room for Facebook to decide what images are allowed and what images are considered a violation. And, according to the new policy, The SCAR Project images previously taken down remain to be a violation. We continue to await the decision by Facebook as to whether or not they will re-post the images (including the hundreds of comments that accompany them) that were previously removed. It has now been over a month and we have yet to see those images restored to the Facebook page.
But the truth is that nothing has really changed at Facebook. In fact, the issue has nothing to do with breast cancer at all. Facebook never had any issues with mastectomies from the beginning. Mastectomies are not the problem. Nipples are. But not men’s nipples. Only women’s. Somewhere buried within the history of America’s societal evolution (or lack thereof), the female nipple became a body part to be hidden and ashamed of. The female nipple has and continues to violate every media policy in our country, but no one will admit to that fact. David Jay brought up the issue repeatedly while in discussions with Facebook, asking them to at least clarify that it was the female nipple that was in violation. Silence. No one wants to talk about it, yet everyone wants to abide by the unspoken “rule”: The female nipple is illegal in America.
And now, as we enter the world of breast cancer treatment (where we have everything from no breasts, breasts but no nipples, one breast with one nipple, breasts with reconstructed or tattooed nipples) we enter into a gray area that perpetuates the nipple conundrum. And the recent issue with Facebook’s policies has once again shined the limelight on the elephant in the room, only for the issue to be skirted around and avoided. How many more generations will continue to accept this view of the female body? With everyone’s recent finger-pointing at Facebook’s lack of clear policies regarding discriminatory, hateful, sexist, bigoted and misogynistic posts, the problem lies much deeper. And it is buried underneath decades of a misconstrued view of what a woman and her body represents.
You can read more of the press coverage at the following links:
ABCnews.com: Facebook Launches New Policy to Allow Mastectomy Photos
(Also posted on GMA/Yahoo)
ABC News Radio: Facebook Launches Policy to Allow Mastectomy Photos
NY Daily News: After backlash, Facebook says mastectomy photos are OK
Chicago Tribune: Facebook says yes to post-mastectomy photos
Huffington Post: Facebook Revises Wording of Policy on Post-MastectomyPhotos
Boston Globe: Facebook changes policy to allow post-mastectomy photos
Shape Magazine: Facebook Allows Post-Mastectomy Photos
The Inquisitr: Mastectomy Photos Allowed By New Facebook Policy
[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.