Tag Archive | mastectomy

The Girl Who Put The V In Living Sincerely

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[Most friends/fans of The SCAR Project are familiar with this beautiful face. Many of you followed Vanessa Tiemeier’s journey via The Live Sincerely Project. This week marks the second anniversary of her passing. It has been a rough week for her family, the SCAR family/community, and all of us who loved the girl who put the V in living sincerely and left a V-shaped hole behind, in our hearts. For me, Facebook has been reminding me of all the lasts I got to have with her. #everydamnday. Like I’d forget or something. I haven’t forgotten, nor have I gotten over losing her presence in this world and in my life. And I hope I never do cuz how shallow would that be of me? Recently I was asked to write an article about Vanessa for SoHza magazine, honoring her memory. I thought I’d share an extended version of it here, along with a few extra pictures, because even though Facebook posted the last last on Feb. 23 when she took her last breath and went to her rest, I’m not done. Remembering V. I can’t write Vanessa’s SCAR story from her perspective. I hope someday to share her SCAR story from her husband Billy’s and her sisters’ Jess and Christina’s perspectives on this space. But in the meantime, in memory of Vanessa and in the spirit of living sincerely, here’s my story about my beautiful friend V.]

by Joules Evans

You know how a yes or no decision can sometimes feel like a coin toss…but then that yes or no somehow sends out some kind of a ripple effect that alters your course? Or how randomly bumping into a beautiful stranger at an art gallery in NYC can sincerely change your life? That’s what happened to me on a Saturday afternoon in October of 2010 when I got invited on a roadtrip to the Big Apple to see the world premiere of The SCAR Project and met Vanessa Tiemeier.

It was a Saturday afternoon on my first day in the city that never sleeps, and I was feeling the energy as I stepped into the holy hush of the exhibit, to take a private gallery tour with SCAR Project photographer David Jay and a few of the models who were on hand. I really didn’t know what I was walking into. It seemed like such a simple left turn into the gallery off Soho, but it ended up being more of that proverbial left that I shoulda taken in Albuquerque. And am so glad I did.

When my friend Shelly invited me to go to the opening with her during chemo one day, I remember thinking that I was already pretty breast cancer aware. I didn’t even Google The SCAR Project because really all I heard when she asked me to go with her was ROADTRIP TO NYC. Which meant, 10 hours in the car not the chemo lounge, and a weekend in the Big Apple that would take girls night out to a whole new level.

When I walked into the gallery and face to face with SCAR Emily’s portrait, I realized I was not as breast cancer aware as I thought I was. She was baring her scars AND a pregnant belly.

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Her absolute reality, surviving cancer, was a completely different story than mine. Since I was 41 when I was diagnosed, I had already had my children, nursed my babies; they were all teenagers at that point in my journey. Emily had faced cancer, and was facing me, with child, without breasts.

And then I met Vanessa.

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She and her husband Billy were standing beside her SCAR portrait. When she shared her SCAR story, I learned more about her absolute reality of surviving cancer. SCAR stands for Surviving Cancer. Absolute Reality. It’s an awareness campaign that young women can and do get breast cancer.

Vanessa’s absolute reality of surviving cancer was completely different from both mine, and Emily’s. The truth is, everybody’s is. But I had never thought about it like that because I only knew my own reality. Bumping into Vanessa that day 5 years ago cracked me and mine wide open.

Vanessa was only 25, newly married, and she and Billy were ready to begin filling the quiver…when she was diagnosed with breast cancer. Vanessa had always dreamed of a really full quiver. She and her sisters, Jessica and Christina, were always very close, both growing up, and as grown-ups. They’d even started a graphic design business called Blustery Day Design together. Vanessa wanted all that and more, for the children she dreamed of having.

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Christina, Vanessa, Jessica

Prior to that opening of the exhibit, Vanessa had already fought a second battle with the disease, bared her (new and old) scars again by posing for a second SCAR photograph, and shared her SCAR story in the EMMY award-winning SCAR documentary, Baring It All, by Patricia Zagarella.

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The SCAR Project meant so much to Vanessa, because, as she told me many times, being a graphic designer, she was way more visual than verbal, and this was the best way she could articulate her new reality. It was her way of showing the world what a young woman’s absolute reality of surviving cancer really looked like.

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A broken pinky finger, slammed in a drawer, and one precautionary Pet Scan later—which “lit up like a Christmas tree”—ended up as a Stage 4 metastatic breast cancer diagnosis. I don’t know what that feels like and I hope I never do, but she told me what it felt like to her. “I used to be super upbeat and positive like you after getting knocked around by breast cancer the first time. But the ultimate blow of hearing it’s back is a whole another story. Not so pink and fuzzy. Or hopeful. There is no cure. There is no finish line. There is only fight for your life for the rest of your life.”

The thing about Vanessa was that even though she knew she was living on “borrowed time” she was not going down without one helluva fight, nor having wasted that precious gift of time. Her mantra was LIVE SINCERELY, which she had tattooed on her left calf, with a pink peony, her favorite flower. That was her pink ribbon. Her message was basically, “don’t wait till you find out you are dying to really live.” This is how she lived and loved and fought. Fierce. Both for herself, and for other young women like her.

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And there she was, standing beside her SCAR portrait, sharing her SCAR story.

When she mentioned she was from Cincinnati, something sparked in me. As much as she was standing there, literally, beside herself, next to her portrait, I was feeling quite beside myself, to tell her that I was also a survivor from Cincinnati. I told her how moved I was by the exhibit, her SCAR portrait and story, not to mention the crazy beautiful serendipity of our meeting…and would she like to work together to try and bring the exhibit to Cincinnati? “Yes,” she said, simply. “Let’s bring it.”

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Somehow we did. Neither of us had ever done anything like producing a breast cancer event, let alone a major art exhibit before. We really didn’t know what we were doing. We fumbled around trying to find a proper venue for quite awhile. But then we met Litsa Spanos, owner of Art Design Consultants. When she heard about The SCAR Project, she offered to host the exhibit at her gorgeous “Gallery in the Sky” downtown.

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But it almost didn’t. After 6 months of intense planning. Two weeks before the opening of our Cincinnati SCAR exhibit, Vanessa, who’d been dealing with severe headaches, got a bad report from the scans. The disease had spread to the lining of her brain, requiring immediate radiation. We talked about canceling the exhibit but Vanessa’s response to that was basically “the show must go on.”

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Vanessa’s sister Christina Blust at the Cincinnati opening.

Somehow it did. All I know is that we were an awesome team. We ended up raising $13,500 for our chosen local beneficiary: The Pink Ribbon Girls, and $7,500 for The SCAR Project. All I know is it had everything to do with Vanessa putting herself out there as the face of young breast cancer in Cincinnati. All I know was getting to work with Vanessa on something so beautiful and so much bigger that us all, changed my life. And I know Litsa feels the same way.

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All I know is when the cancer wouldn’t back down, went to her brain, and kept progressing, Vanessa didn’t back down one bit either. She and her sisters created The Live Sincerely Project, to be her legacy, based on her motto. She spent the rest of her days sharing the project and encouraging people to take the pledge. A few of my last memories of my beautiful friend Vanessa, were of her hoping her movement would keep spreading, of her checking to see where in the world people had taken the pledge to Live Sincerely, and of her making 100’s of Live Sincerely signs with different fonts and borders. All I know is: Take that cancer. Vanessa won; you lost. She is free of you now but lives on in the hearts of everyone who was lucky like me to know her, or who will hear about Vanessa through The SCAR Project or her Live Sincerely Project. All I know is that despite everything you tried to throw at her, she still left a beauty mark that she was here.

When I think of Vanessa, I think she answered the poet Mary Oliver’s most poignant question so beautifully: “What are you going to do with your one wild and precious life?” Live Sincerely.

RIP V

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Chemo Kardashian

[So. Many. People. ask me about the girl in this breathtakingly beautiful Indian woman SCAR portrait. My girl Sona. I met Sona at The SCAR Project Cincinnati Exhibit in 2011. This was a pretty epic exhibit, with about 20 of the SCAR girls coming to my town. First of all, it was the first time SCAR exhibited outside NYC. Secondly, it was when some kind of superglue bond between the SCAR girls happened. When Sona arrived in Cincy in 2011, we rented a motorized wheelchair for her, as not being able to walk was one of the side effects she was dealing with, from chemo. In 2013, Sona came back to Cincy, this time for our Cincinnati SCAR sister Vanessa Tiemeier’s celebration of life. But this time, she walked off the plane. That’s how they roll, showing up for one another like that. It’s been one of the blessings of my life to witness. Just like my sweet Sona Sunflower.]

Guest Post by SCAR Girl Sona

Cancer 1.0 (Sona ~ 19 years old.)

The first time I had cancer, I never knew. I had not been told those words that I’ve gotten numb to hearing all these years later. I was 19 years old and a freshman at NYU. I had a double major and double minor, which didn’t leave me time for a double mastectomy. I was touching every area of interest in my studies and my lifestyle. MY whole life was ahead of me. Pain in my breasts had led the doctor to find lumps. Three to be exact. I spent Valentine’s Day that year lamenting that I was having three lumpectomies done. Two on the left side, one on the right. “Fibroadenomas,” they said, which begged relief. After all, it “wasn’t” cancer.  In those days, they didn’t drop their jaws at things that would be a concern today. What no one told me about was the DCIS (Ductal Carcinoma In Situ) that I found in my operation report 17 years later when I was diagnosed with stage 3 cancer at the age of 36. That’s when I heard the words that stopped me in my tracks. It was as though I had just heard that the field I was running through was filled with landmines. Which it was.

Cancer 2.0 (Sona ~ 36 years old. Sai ~ 2 years old.)

I was married, the mother of a two-year-old son, and smack in the middle of graduate school when I was finally diagnosed with cancer. 17 years. I had already been through enough (or so I had thought), by then. My plate was fullprevious breast surgeries, PTSD from being at Ground Zero on 9/11, congenital Ehlers-Danlos Syndrome that had cost me over a dozen various surgeries and procedures, divorcing my soulmate. For dessert, my left breast got 14 cm of cancer that had spread all the way to the axillary lymph nodes. They called it Stage 3 Luminal B (ER+, PR+, HER2-, Kl67 70%). I had DCIS in the right breast.

I was outraged that it hadn’t been caught sooner. Let me backtrack a bit. I had been having trouble for years and it had seemed as though no one was listening to whatever red flags I’d had the courage to wave. Actively nursing, my milk ducts had been getting clogged to the point of having to have them surgically extracted. This is very difficult to do since the nipples don’t have skin over them and therefore cannot be stitched up. It requires pumping and dumping bloody milk for a week as the nipples heal. I had sounded the alarm to my OBGYN and a oncological GYN. No one had said cancer when I was 19, but I had been told to be careful and concerned going forth. My complaints were all brushed aside. Since I had been nursing my son, something I planned to do for 2 years (recommended by WHO),  I had been told that once I weaned him, they’d look at it with a mammogram to see what was going on. I didn’t last the two years.

Cancer came in kicking and screaming, knocking my door of self-awareness flat off the hinges. I knew something was wrong. I was in excruciating pain for months. Breasts would fill quickly and get engorged and I’d pump a whopping 10 ounces out of each between feedings! My son was a barracuda and nursed strongly. I thought this might be why I hurt so much. I complained of pain all the time but didn’t have anyone take the complaints seriously. I couldn’t so much as lie on my bellyany pressure on the breasts sent sharp pains like needles through the entirety of my double Ds.

At this point, I moved from Florida to New Jersey to stay with my mom so I could have help with my child while I tried to find out what was going on. My son was two, non-verbal, not potty trained, and would not feed from anything but my breasts. We would later find out that he had classic autism. My husband was not dealing with stress well. I needed reliable help.

It took me six months to be able to see the gynecologist in New Jersey, who then told me not to worry about it. “It’s just connective tissue,” she said. She felt the breasts and was positive it was not cancer and that I did not need a mammogram. On this, my first and last visit to this doctor, I demanded from her a script for a mammogram because NOT ONLY was I in so much pain I could barely handle it, but I was also covered for a baseline at age 35 by my crappy University insurance plan and it would be bad practice for her to deny me a freaking baseline at 36. She consented hesitantly and let it be known that she didn’t care for me getting huffy with her.

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Thank God for intuition and the pain that cancer brought because I would never have caught it if I had not been assertive. I was adamantly told it was NOT cancer just by the doctor feeling my breasts confidently, even after hearing about the history I had from age 19. This is what still infuriates me. It could have and should have been caught earlier because even young people get cancer. (Which is what The SCAR Project is all about.) An MRI or Ultrasound could have diagnosed it if the doctors had bothered to give me one in Florida.

Finally, after scans, biopsies, and much worrying, I heard those words on June 13, 2007: “You have cancer.” I opted for the double mastectomy and the TRAM flap reconstruction. I thought it was a natural choice. I had a radial tire going on and who would say no to having that nipped and tucked for the sake of the cancer and reconstruction? You see, a pedicle TRAM flap is where they carve out your breasts from the skin and then move your abdominal muscle into the flap. You end up with 4 of your 6-pack in your boobs, basically. This is a procedure most doctors will not agree to do bilaterally anymore. You will see why.

The surgery took 11.5 hours and involved my surgical oncologist and a plastic surgeon. When it was over, I had blood clots in both my lungs and cancer cells still in the chest wall (which I would find out seven and a half years down the road). The blood clots didn’t kill me but they royally fucked up my reconstruction and I had to have the whole thing redone a year later. I had ten months of open wounds due to the Ehlers Danlos Syndrome the first time around and six months of open wounds after the revision. I spent about 30 months unable to walk without assistance. Immediately after the initial surgery, I had begun six months of chemo and watched my husband relapse into a heroin addiction he had kicked before we had met. I sent him to rehab twice, but when he slit his wrists in our living room while I was out at one of my doctor’s appointments, we parted ways, for all of our sakes and personal battles, and for my son’s safety.

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The chemo was difficult. I had allergies to two of the three drugs (Adriamycin, Taxol, and Cytoxan) and had to keep stopping treatments here and there due to my counts going off-the-charts  low. It took me six months and I didn’t even finish the Taxol. The neuropathy had reached my face and my lips and I was left speaking as though I had been injected with Novocaine. The Neulasta shots were mind numbingly painful. It made my bone marrow swell, creating pressure from within my bones. All of them. Each injection would be followed by three days of not being able to shower due to the pain of mere water on my skin. During this time, I could not be touched by anyone. I had to take medication to facilitate long bouts of sleep. Simply existing, during that phase of the chemo cycle was the hardest thing I have ever had to do. I would sit and cry, unable to move. My mother would watch, wanting to hug me but knowing it would only make the pain worse. Nothing brought relief except sleep. I was grateful for my education in Psychology, for it was the miracle of a clever cognitive reframe that got me through this time.

I told myself repeatedly (like a mantra) that God was giving me a choice: either I could go through the chemo, or my son would have to. It wasn’t true, of course. It was merely a device that, when used repeatedly, gave me the courage to go get my treatment. Whenever I thought I couldn’t take it anymore, all I had to do was repeat this to myself over and over, and the strength came. There is nothing greater than a Mother’s love. Not even the pain of Neulasta. It’s tools like this that have kept me strong and resilient through the years.

I took Coumadin for two years for the pulmonary emboli. It was a constant reminder of that OTHER brush against death. I was already on borrowed time and lucky to be alive. Once dose-dense chemo was done, I started Arimidex hormone therapy, Lupron monthly chemo, and bi-annual infusions of Aredia. I stayed on this regimen for five years. Turns out I should have never stopped it. That regimen was keeping the cancer that was left in me from growing. Chemo saved my life just as much as it messed it up. I still struggle with neuropathy, pain, issues with the mesh implant from the TRAM flap reconstruction, chemobrain and migraines. I still often need assistance to walk. I own a motorized wheelchair and people who know me and are very used to seeing me in it during my roughest times.

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One of the complications from the TRAM flap procedure was requiring a plastic mesh to be placed in my torso. This proved to be a major annoyance to the point of placing me in a wheelchair or walking with assistance at best. I was like that for five years until the chemo all stopped. It took a year after that to build my strength and I did start walking again. I thought the nightmare was over and I could resume life. It had been a horrible five years. I had tried to reconcile with my husband for the sake of our child, which proved to be a bad decision, for he had never truly kicked his drug habit. I was also to find out later he had inflicted unspeakable physical and mental abuse upon our autistic child. I filed for divorce, got a permanent restraining order and bought a condo on the serene and beautiful Florida Intracoastal waterway. I took the time to focus on my child and give him the life we both neededstress-free, warm, and loving.

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I had desperately needed to rebuild my life. I was watching it being done all around me. I had come to know a small sisterhood of other young survivors through my involvement in David Jay’s SCAR Project. This was a healing experience that catapulted me into a network of others just like me who had to survive cancer whilst juggling kids or dating or divorce or grad school or all of the above (as I was). Young adult cancer is not the same thing as your grandmother’s cancer. You’re often the center of the family when you’re young and things fall apart when the center does not hold. Lives are shattered in the wake of cancer. My SCAR sisters were walking this minefield with me and we leaned on each other, sharing all of it: the good and the bad, the lessons, and the funerals. I was doing Reiki, drumming and chanting, and utilizing diet, crystals, oils, herbs, teas, roots, mushrooms, meditations, tarot, massage, and music. I had a whole program of wellness. I was a phoenix rising out of the ashes. I was tickled to have several media folks write articles about my outlook or shoot videos to discuss different things I was doing in recovery (drum circles, dragonboating, etc.). I had become a poster girl for young adults living with cancer.

I did get strong enough to walk on my own, become active with cub scouts, start to let my ministry and spiritual aspirations unfold, and even develop a social life in South Florida. I finished my degree,  I sang karaoke, I hung out at the kava bar, I camped with scouts, and I had acquired a nanny which freed me up for lots of “me time” for the first time. I even started dating again.

The Ehlers-Danlos proved to be a nightmare itself whilst I thought I was NED (no evidence of disease), and I at one point ended up in the wheelchair again a year after I had begun walking on my own. I had torn five different ligaments and tendons the first time I attempted water slides since recovery. This was a hard blow. I had fought to get out of the house and have a social life and it seemed like just months into me finally getting my groove back. BAM! Back to being sedentary at home. I fought to get out and forge a social life for myself, despite the wheels. I’d go sing karaoke since music always made me feel better. I’d go have some kava. Being social and falling in love saved me mentally from falling into a depression over my health.

Love went out the door literally however when cancer came back into the picture. To his credit, my boyfriend did try to come back a few days later and repair the relationship, but the decision had already been made. I was moving to New Jersey in the morning to be with my mother. Once again I found myself with someone I could not rely upon. Men who are equipped and willing to embark on a healing journey with their soulmates will forever hold a very special place in my heart because I have spent my life looking for that man. And I end up at my mother’s house every time, dependent upon her to care for my son whilst I buckle up and brace for the fight.  

Cancer 3.0 (Sona ~ 44. Sai ~ 9)

So, just as love walked out the door, cancer came in, took his shoes off, and made himself at home.

I was perplexed and angry at first when I heard there was cancer found in a breast that had already been removed. This wasn’t supposed to happen. We get mastectomies SO THAT this doesn’t happen. My oncologist told me with actual tears in his eyes how sorry he was and that there was a less than 1% chance of this happening. It was not common. I was learning that I was pretty much a candidate for all medical weirdness, anomalies, rare adverse effects, and flat out flukes of medical science.

This time around (what I call Cancer 3.0), I had my ovaries removed along with the cancer. It was clear that the hormones were fuel to my tumor. Recovery from this went far better than the previous surgeries. Protocols have also evolved over the last eight years. I have even received the radiation I should have gotten seven  years ago. They are learning that in young people, cancer is more aggressive. We are more at risk for recurrence and metastasis. I’ve seen it firsthand. I’ve buried a few of my SCAR Sisters.

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I have been living sincerely. I have been using diet, energy work, crystals, oils, natural medicine, meditation, and comedy, adjunctively with surgery and radiation. Cancer has brought many interesting practices into my life: drum circles, Reiki, crystal singing bowls, dragonboating, Jin Shin Jyutsu, Tai Chi, crystals, mantras, Ayahuasca, labyrinths, somatron chairs, play therapy and sand trays, and much more. I even play video games for Cancer 3.0 with storylines involving battling cancer cells. But I am NOT the happy poster child this time. I repressed my anger during Cancer 2.0 and this time I am going to express the full gamut of emotions. None of that “oh, just think positive” shit. Positive thinking and visualizations are awesome and I use them regularly as tools. But growling, releasing anger, and being honest about my experience (no matter what YOU may think of my outbursts) is what needs to be done so that I DON’T suppress it and let it fester below the surface planting seeds for another outbreak. Most importantly is  humor. I have learned how to incorporate my twisted humor and have been known to walk around in shirts that say things like: “Cancer only the pretty people have it.” My handle is “Chemo Kardashian.” I laugh at everything I can think of to laugh at, including myself. People so often comment on how good I look despite what I’ve endured. I’ve used the pop culture reference to the Kardashians to poke fun at the emphasis people put on looks over health.

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I’m STILL in the middle of a brutal divorce. Seven years post-separation and I am still mid-litigation! My soon-to-be-ex-husband even petitioned the court to prohibit me from treating my cancer out of state (going so far as to ask for my son to be remanded into foster care until I am better, which thankfully was recognized by the judge as a shitty idea). I deal with this and focus on rest and treatments.

Upon my return to Florida, I was slapped with litigation involving custody issues due to going out of state for treatment. Because of the costs of attorneys, and only having disability income to survive on, I have yet to have follow up scans done. My funds have gone to fighting the litigation and defending my son’s safety. I never thought I’d come across something that cancer had to take a back seat to. Hopefully soon this litigation will end and I can focus on my health. Plus with all I’ve gone through, I want to spend some time enjoying and relishing life. I’m waiting to exhale though, and hoping that rest and true convalescence is just around the corner.

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A Response to Facebook’s Reversal of its Ban on SCAR Images

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

ThinkProgress: Facebook Promises to Stop Treating Photos of Breast Cancer Scars Like Pornography

CNET: Breast cancer activists win battle with Facebook over mastectomy photos

Huffington Post: Facebook Revises Wording of Policy on Post-MastectomyPhotos

The Daily Dot: 20,000 people convince Facebook to officially embracemastectomy photos

Medical Daily: Facebook Mastectomy Photos: Social Network ‘Clarifies’ Policy, Allows Breast Cancer Survivor Photos After Viral Backlash

TIME: Facebook Is Officially OK With (Some) Mastectomy Photos

Boston Globe: Facebook changes policy to allow post-mastectomy photos

Shape Magazine: Facebook Allows Post-Mastectomy Photos

Telegraph: Facebook allows mastectomy photos after breast cancer patient’s petition

The Inquisitr: Mastectomy Photos Allowed By New Facebook Policy

Daily Mail: Facebook launches new policy allowing mastectomy photos after breast cancer patient’s 20,000-strong petition

Herald Sun: Facebook allows post-mastectomy photos following petition

 

The Girl With the Red Hair and a Tear – a guest post

[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.]

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“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.