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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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Under-the-Radar-Girl

[As The SCAR Project Exhibition is en route to Rio de Janeiro, Brazil, where it will premiere this Thursday, today’s special guest post by Aussie SCAR girl Heidi Walker, seems an apropos send-off from Sydney, where The SCAR Project just wrapped up its recent exhibit.  Heidi attended the Australian premiere. It was a beautiful moment in SCAR history for the exhibit to come back to where it all began, when SCAR Photographer David Jay’s dear friend Paulina was diagnosed with breast cancer. As good friends, he had taken her picture hundreds of times, but the picture he took of her after she had her mastectomy and then showed up in yoga class in her leotard and her new reality of having only one breast, changed things. For David, for Paulina, for all the women who would than contact David to have their portraits taken…for Heidi.]

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Guest Post by SCAR Girl Heidi Walker

I am a dreamer. I love to sit with my thoughts, and plan and play, and let my mind wander into nothingness. The future, I just love dreaming about the future. Don’t get me wrong I think I can live in the now and I understand the importance of that “power of now” mind control, but daydreaming is what I do best. I’m happy there. Tuesday 7th November 2006 dreaming ceased. My world stood still and everything kept spinning around me. Reality was my only mind wander. Dark, cruel, harsh, messy, day-by-day, chemo-to-chemo, reality.

I’d noticed a lump, like a pea under my right arm on my honeymoon in the April. I really didn’t think anything of it. A couple of months past until I made my 1st Doctors appointment. I mean I was only just 24, no family history, and healthy.

Cancer just doesn’t happen to this under-the-radar girl.

The doctor agreed, “Just a swollen lymph node,” she said. “Cancer feels grisly; yours doesn’t,” she said. “You’re too young,” she said. Hmmph. By October I started noticing my right arm felt strange, tingly, and the lump had increased. I also felt another lump within my breast. Lump at ten o’clock, lump at eleven o’clock; the clock was ticking on this killer boob.

Those words “your results have been remarkable” make me giggle now. I don’t know what I thought the doctor was going to announce *Cue trumpet “amazing, remarkable golden nugget found within”. Those words confused me. Huh? ”Cancer cells have been detected.” Hold on, a little clearer for the blonde in the room, so, what you are saying is I. Have. Cancer?? *Cue river of tears.

So began this rollercoaster of life with far more twists and turns than I had imagined it would. The previous month, I’d trekked 42kms with my husband and in-laws. I’d just received my wedding album. And I’d resigned one job, to start a new one that would allow me to begin my dream make-up artistry course: *dream-life. But the month in front of me, I’d be having my right breast cut from my body. I’d begin In Vitro Fertilization, in case I became infertile from the six courses of chemo I’d begin.

And I’d throw out all my low cut t-shirts *Booo, add wig shopping to the to-do list, and wonder if I will live, or die.

I was so scared for the girl who would wake up from the anaesthetic, my first anesthetic. Would she be mad at me for taking her breast? Would she forget and not know what I had done to her until she looked down and saw . . . well, nothing but a scar? It was like another person would be waking up. Would I loose myself, along with my breast? I wasn’t sure.

For a while I think I disappeared, became a shadow of myself. I had to control my mind. No future dreams or plans. It felt like a tease to dream of what I felt I wouldn’t reach. Day by day, I just got by, holding on to a glimmer of hope that that dark shadow lurking over my shoulder would dissipate and the sun would shine again.

I stumbled across The SCAR Project accidentally. I hadn’t seen the images, only a small piece from David Jay about his project online. Four years post cancer, I wanted to do something meaningful. Something that might give other young women some hope that cancer isn’t always the end. Sometimes it is.

But I knew that all I wanted when I was first diagnosed was to see other young women growing older . . . having families . . . living . . . thriving . . .

Even though that isn’t always the reality. I never imagined that as I left David’s Bondi studio, a huge wave of empowerment, freedom, and acceptance would come over me. I felt as though I was truly honest for the first time.

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This is me. I’m imperfect, but I am alive. Immortalized in print, naked from the waist up.

These images I now know well, my friends, my SCAR sisters. They often stare back at me from my laptop; they give me strength and inspire me when I need it. They are raw and deep; transparent. They are take-your-breath-away-beautiful & shocking. Young women like me. Like you.

These portraits recently graced the walls of the David Jones Elizabeth Street store, Sydney, my home soil. The space was beautiful Circa 1920’s, high ceilings and a soft golden glow pours through the tall arched windows. My breath was literally taken away. I stood staring into the eyes of Darling Jolene, with a lump in my throat and my eyes tingling. So beautiful, painful and honest. I saw Paulina the first of David’s portraits, starring down the camera fiercely; I saw her standing in front of her image, her past. She looks beautiful, fit, and healthy.

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Paulina standing by her SCAR Portrait at David Jones Gallery in Sydney, Australia. 2014

My husband and I attended the opening night, and I have been back a second time with my mum and sister. To share such a meaningful part of my life, my healing process with them was a feeling I can’t describe. As they walked around with me I shared these women’s stories, past and present, they were in awe of their courage. Some woman are smiling, even laughing, others are starring into your soul, another crying. Some are living on this earth, some have moved to the next world. I have seen these images before and been touched.

Heidi standing by Barbie's SCAR portrait.

Heidi standing by Barbie’s SCAR portrait

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“I am one of these women; yet, standing face to face with them, I ached joy and sadness with every cell of my being.”

I look back on 2006 with mixed emotions. I was married, *smiley face. Breast Cancer happened, *sad-angry-confused face. But I feel lucky that I’m starring down the 8 year barrel looking back to what was, having faced the struggles that come with illness, disfigurement, life hurdles, and being a young woman. I never want to meet that C witch again, but l try to take away anything positive I can from this experience—or any tough experience—to learn what I can about myself, and about others. Breast cancer, well, it just was. I feel lucky that I can say that today. I hope I can continue to say that. It just was. It changed much in my life, altered a cruisey path. I am scarred, mostly scars that run flesh deep. But I am here now, living and dreaming.

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Heidi and her husband Ryan. Trekking down dreams.

How Many Likes?

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[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.

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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.

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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.

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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.”

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*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.

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Cutest photo bomber EVER!

The “N” Word

[Today’s guest post is written by Debi Memmolo, breast cancer survivor and friend of David Jay, in response to the most recent removal of SCAR images from Facebook.]

Just after my 38th birthday, I had the life-changing pleasure of attending an exhibit of The SCAR Project, a series of large-scale portraits of young women confronting breast cancer, shot by fashion photographer David Jay. I saw myself in each of these women. I saw, in real life, the ravages of this disease. I saw beauty. I walked away with an invaluable gift: I do not need breasts to be beautiful.

A few months later, I too had my breasts removed to fight the cancer that was growing inside me. Yes, I had them “reconstructed,” but what remains on my chest are two, uneven mounds covered in taut skin and some scars. As it turns out, this now gives me the legal right to walk down the streets of New York City bare chested. (Nudity, it turns out, is defined as exposure of a woman’s nipple.) Well, aren’t I lucky?

This week Facebook removed the SCAR Project’s photographs, posted to honor one of the SCAR girls in light of her recent passing, February 23. Hundreds of followers of The SCAR Project wrote beautiful messages upon seeing these photographs (while they were still up) and hearing the news of her death. And then, without warning (or apparently a deep thought), Facebook took them all down and locked David Jay out of his own page. Why? Because nipples are improper nudity on Facebook and a hint of one of Vanessa’s nipples was in one of the images.

With some protest, some (not all) of the images were replaced. David was still denied access. I may have left this alone, but then I learned this was not the first time Facebook acted this way. In fact, it has happened several times. In mid-2013, there was a media frenzy regarding Facebook’s policies and its impact on The SCAR Project and young women with breast cancer. Facebook reversed itself then too. Nothing really changed though.

It is, perhaps, not fair to hold Facebook accountable for this action. I do not think that its policies are aimed at maligning the goodwill served by such things as The SCAR Project. This is clearly a response to something larger in our society – the female nipple and its tie to sexuality.

Innumerable people have asked me why I have not decided to have nipple reconstruction. (The “reconstruction” is performed either by twisting and stitching skin or getting a tattoo of a nipple). I am truly dumbfounded by this question. My nipples served their purpose: I had the immense fortune of nursing two children with them. Now, this disease has taken my fertility and the utility of a nipple.

And I do not need nipples anymore. While nursing, my real nipples were exposed in some of the finest restaurants, from coast to coast. They also were out on airplanes, on the side of the road and, in moving vehicles. No one seemed aroused or stimulated by the sight of a woman using her breast for its intended purpose, feeding her young.

The right to breast feed in public has seen its day in the media, but those battles, too, did not really get to the point. Why are we so fixated on the female nipple? And why is it so different from that of the male?

We are living in modern times, with modern sensibilities. This is not the Victorian Era. Why are we still struggling to acknowledge that exposure of a female nipple can, perhaps, be no less pornographic than the exposure of a man’s? Why are we still objectifying body parts?

A prosthetic nipple will make me no more or less a woman than I already am. Despite my SCARs [Surviving Cancer.] [Absolute Reality.] I am, after all, still a woman.

[Debi Memmolo lives in NYC and spends her days raising her two young children. Prior to battling cancer and being a full-time mom, Debi was an elementary school teacher, technology marketer and certified public accountant. She thinks a lot about writing but rarely writes.]

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Where There Are Scars…There is Healing

[Today’s guest post is from my beautiful friend/SCAR sister Jocelyn. I met Jocelyn while producing and promoting The SCAR Project Cincinnati Exhibition. Jocelyn’s stunningly beautiful SCAR portrait, taken with her stunningly beautiful daughter, Nayilah. The cool thing about this portrait, is that it was actually taken during the Cincinnati exhibition, in one of the gallery, which we walled off and turned into a photo shoot area.]

Guest Post by Jocelyn Whitfield Banks

This blog is in tribute to The Scar Project and to that frightening, but awe-inspiring moment when I took off my clothes for fashion photographer David Jay, allowing him to photograph my scars from mulitple battles with breast cancer. In 2002 a diagnosis of an aggressive breast cancer prompted the decision for a bilateral mastectomy just 30 days after my 25th birthday had come and gone.

After a second diagnosis, seven reconstruction surgeries later, and hundreds of thousands of dollars in hospital stays I am in awe of the nearly 70 inches of scars running across my trunk, my abdomen, my hips, and my new breasts. The process at times has been exhausting, overwhelming and just plain tough. At other times it has been exhilarating, and encouraging to see the inner-strength that I have as I “dig deep” for the determination to beat cancer and not let it beat me.

Some would believe that all of those post-mastectomy scars might make me “damaged goods” but I’m a firm believer that those scars are an outward and physical sign from my body that says “I may be injured, but look at me. I am healing”… Where there are scars and cuts and stitching, there is inevitably healing going on in the body. The initial trauma is over, the wounds have scabbed over, and the production of collagen to repair all of these incisions is hard at work making the parts of the body that have been cut, moved, and stitched back together heal and find their new norm in both form and function. Yes, that dark railroad of lines running across me say to me that my body is healing and we’re going to be OK…

Baring my Scars for all of the world to see was the single greatest indicator for me that I was healing on the inside too. In the pictures of all of these beautiful women, their scars show the physical trauma they each have endured, but it is The Scar Project that captures and displays to the world, the emotional trauma inflicted by breast cancer. The courage, the strength and the determination required to fight this disease are one thing, but the courage to go forth and expose both your vulnerabilities and your triumphs to complete strangers are what makes The Scar Project images so moving, so riveting, and so awe-inspiring. That moment when I proudly shared my scars to show the world that “Breast Cancer is Not a Pink Ribbon”… Well that was the moment I realized that Where There Are Scars… There is also Incredible Healing happening not only on the outside, but all over the inside too.

Our children and our loved ones need an outlet for healing too. That’s why I’m so proud to be part of a nationwide effort to support families fighting breast cancer too. Visit Mommy Has Breast Cancer for more information regarding this great 501c3 charity and for ways that you can get involved in the fight too.

Houston: We Are Set For The SCAR Project Exhibition

[With all systems GO for The SCAR Project Exhibition to premiere in Houston this week, I am happy, honored, humbled to hand over the SCAR blog mic to CEO and Creative Director of American Art Resources, Kathy Hathorn. An innovator and pioneer in developing patient-focused art programs for healthcare facilities, Hathorn is an authority in art and its impact on patients in healthcare settings. Other signature projects, besides her work with MD Anderson Cancer Center, includes: Celebration Health, Northwestern Memorial Hospital and Prentice Women’s Hospital, Phoenix Children’s Hospital, Duke University Cancer Center and the new Parkland Hospital. She sits on various boards and councils related to healthcare research and design, and lectures both in the US and abroad as an expert in evidence-based art programs. In 2001 Hathorn co-authored the Evidence-Based Guidelines for Selecting Healthcare Art with Roger Ulrich. She founded the RED Center whose original research has been published in peer-reviewed journals and in Joint Commission’s Environment of Care. Hathorn has been featured in Business Week and The Coolest Entrepreneurs in America, and was named one of the 25 Most Influential People in Healthcare Design in 2009. She was the 2011 recipient of the Symposium Distinction Award. She was commissioned in 2012 by the National Academy of Sciences in Washington, DC. to write a white paper on the effects of art on the aging, due for publication in 2013. Besides all that, Kathy Hathorn was instrumental in bringing The SCAR Project to Houston.]

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Guest Post by Kathy Hathorn

An authority on art and its impact on patients in healthcare settings, I am frequently asked by my healthcare clients, if a particular work of art is appropriate to display or include in a hospital’s art collection.

I had a unique experience a few months back, when MD Anderson Cancer Center’s Dr. Oliver Bogler asked me to review the work of New York photographer David Jay.

I replied that MD Anderson doesn’t have a rotating gallery space but that the work HAD to be brought to Houston. Hands down, The SCAR Project was the most incredible work I had ever seen!

I have always been drawn to figurative black and white photography—it draws me in in a way that no other genre ever does. David’s work has the raw brutality of Diane Arbus’ work but it envelops the viewer in a passion of love, respect, and admiration. Instead of detachment and alienation that viewers can feel about Arbus’ work, these pieces bring out every shred of humanity in the viewer who wants to reach out to each of the subjects and say, “You are beautiful….”

Bringing the work to Houston became a personal mission. My first thought was that Gremillion Gallery had the perfect exhibition space for the large format works. I also knew that the gallery has been incredibly generous in lending its space to various charitable events over the years. It was a quick and emphatic yes when I asked Ron Gremillion and Chris Skidmore if they were interested.

It must have been serendipity but as soon as there was a fabulous exhibition space, there was also funding to bring the show to Houston! Pink Ribbons Project, a breast cancer survivor non-profit organization, generously agreed to underwrite the hard costs of the exhibit. The show premieres at a private gala event this Thursday, October 17, and runs through October 28th. There are numerous public-service events planned around the exhibit including lectures by both the artist and various breast health experts. Click HERE for the exhibit schedule and ticket information.

The message of the work is undeniable: David Jay has captured the harrowing beauty, dignity, courage and strength of young women dealing, living, and thriving after breast cancer surgery. Both his passion and compassion are piercingly apparent to the viewer.

Blue is the New Pink

Guest Post by Oliver Bogler

“When I grow up I’m going to be a photographer.” That’s what I used to tell my kids, when they were at the age when saying it seemed to be enough to get you there. Now I’d add: “… a photographer like David Jay.” And by that I mean successfull, visionary and socially engaged.

I’m not kidding anyone of course, least of all my children. First of all, I’m never growing up! And secondly, I’m in my late 40s, enjoy my career in cancer research enormously and frankly lack the talent required for art. But photography is a passion of mine, mostly as someone who loves the art form and a little as someone who takes pictures. When I go to art museums I head straight for the photography section, and when I travel the world I often seek out photography above all other sites to see.

So following my diagnosis with breast cancer in September of 2012 I began to become interested in the intersection between this disease and photography. To say that there are a lot of breast cancer images out there, is an understatement in the age of digital photography, and much of it is in the vein of pink. In this landscape the SCAR Project stands out as a beacon of frank art. The first time you see it, it hits you. And that is saying something in an age when visual impact has become significantly blunted by the sheer volume and ever increasing shock value of the media that saturates our culture.

The SCAR Project portraits have an honesty and simplicity that create a connection between the viewer and the subject. The images of young women, bearing scars, are compelling, and draw you in to try and understand their loss and what it means to them. They are also beautifully made photographs, by an artist with a sure eye. The Project has evident integrity. And its goal, to raise awareness that young women do get breast cancer, that the disease does not respect age, is important. Wherever the images appear they accomplish their goal.

In the Fall of 2012, from my freshly diagnosed perspective, the one thing I thought that was missing in the SCAR Project was men. Just as David says “breast cancer is not a pink ribbon”, I say “breast cancer is not a women’s cancer”.

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Oliver’s SCAR Portrait

One in every hundred people with breast cancer is a man. Sure that is a pretty small number, but it is not zero. And men are another segment of the breast cancer world where raising awareness is still urgently needed. Men routinely ignore their symptoms, and are diagnosed later with poorer outcomes because of denial and ignorance.

I am still a little stunned that David agreed to consider men as subjects for his work, and has started a connected body of work, the SCAR Project: male breast cancer. Stunned and deeply grateful. This new work focuses on men of all ages, and they are mostly older than the women in the SCAR Project. That’s because men with this disease are older, and because the goal is to raise awareness for all men. Amongst women, the focus is on younger women, where awareness also lags behind. This male breast cancer work is still in its early stages and I am excited about its future.

As a result of our discussions around men with breast cancer, I was lucky to become acquainted with David and the SCAR Project team, and the idea of bringing the work to Houston was born. Susan Rafte of the Pink Ribbons Project came aboard early, and her foundation which works at the interface of art and breast cancer is the sponsor that is making it happen. Gremillion & Co. Fine Arts generously offered their gallery space for the exhibit. And Kathy Hathorn and American Art Resources are supporting the project too, both by connecting us all and by providing resources to get the pieces hung in the gallery. Now a large team of volunteers is helping make 10 days of viewing and events a reality. In October the SCAR Project will be in Houston for 10 days of exhibits, expert talks from doctors and survivors, chances to meet some of the women photgraphed in the Project, and to hear David talk about the work. There is also a showing of the award winning documentary about the SCAR Project, called Baring it All, at the Museum of Fine Arts Houston.

Please join us. Details of the activities are HERE.

[About Oliver: Dr. Bogler studied Natural Sciences at Cambridge University graduating in 1988, and then completed his PhD at the Ludwig Institute for Cancer Research, University College Branch in London, in 1991. Following a post-doc at the Salk Institute in Developmental Neurobiology, he rejoined the Ludwig Institute, at its San Diego Branch. His first faculty appointment in 1997 was in the Departments of Anatomy and Neurosurgery at Virginia Commonwealth University in Richmond. In 2000 he moved to the Hermelin Brain Tumor Center, Henry Ford Hospital, Detroit and was promoted to Associate Professor in 2002. In 2005 Dr. Bogler joined the Department of Neurosurgery and the Brain Tumor Center at the UT MD Anderson Cancer Center as Director of Basic Research, and was promoted to Professor in 2009. His research was focused on EGFR signaling in glioma and novel platinum compounds. In July 2010 Dr. Bogler accepted the position of Vice President for Global Academic Programs where he manages academic relationships spanning over 30 Sister Institutions in 20 countries on behalf of MD Anderson. In September 2011 he was also appointed Senior Vice President for Academic Affairs, and now focuses on overseeing the 300 people organized into 16 departments in this division, who deliver support for the more than 5,000 academic personnel at MD Anderson and are the stewards of our education mission. He is married to Irene Newsham, PhD, a cancer biologist also working at MD Anderson, and they have two children, aged 10 and 11.]

Follow Oliver’s blog HERE.

Force

[When I stood before my guest blogger ‘s SCAR portrait at the first SCAR Project Exhibition in NYC in 2010, it was the first time I really faced another  woman whose [Surviving Cancer.] [Absolute Reality.]  looked like mine. I knew so little about breast cancer when I was diagnosed in 2008, that I didn’t  know that no reconstruction was even an option any woman ever opted for. The one woman I knew who’d had a double mastectomy, did it prophylactically with immediate reconstruction. In my case there weren’t really options. The best course of action was to wait until after surgery and chemo, to evaluate the reconstruction question: 2B or not 2B?   When I  met Toni at the Cincinnati Exhibition I produced in 2011,  she was still the only other woman I knew who had been there, done that, had to buy a flat new t-shirt like me. I was eager to learn her story, and to share it here.  Now, especially in light of the recent Facebook controversy over SCAR images, and of upcoming exhibition news, I’ve asked my flat and fabulous SCAR sister Toni G. to share her SCAR story. As The SCAR Project exhibition will be premiering in Texas this fall, it seemed fitting to lead up to that with the story of the Lone Star SCAR girl. As she is a science teacher, Part I dealt with the Gravity of cancer. Part II is likewise aptly titled Force.]

Guest Post by SCAR girl Toni G.

After being diagnosed with stage 4 breast cancer at 28 years old, I found my life moving down a new path, even as the geography of my body was being redefined. My dream of being a scientist and having my own lab was no longer a priority like it was in my before cancer days. Being alive, and enjoying life, was. Being a positive force despite the cancer, was too.

In the days and weeks that followed my diagnosis I felt lost. There was an abundance of breast cancer information out there but only a fraction of it was relevant to my situation. I tried to find information from other twenty-somethings fighting cancer while still finishing their degrees. And still dating. And without children. Cancer was forcing me to make some of the most difficult decisions of my life. Sifting through the mountains of information to find the right answers for me felt isolating, was time consuming and emotionally exhausting: Erosion.

One decision was what to do with the breasts that were trying to kill me. I knew without a doubt they had to go, but what would I put in their place? After meeting with a plastic surgeon I knew my reconstruction options on paper, but one size doesnʼt fit all. At the time, I knew I wanted breasts, but I couldnʼt picture what my new breasts would, or could, look like. Expanders? Implants? With or without transplanted belly/back/butt tissue? Another twelve inches of scars on my body? Tattooed nipples? I tried to find pictures online to help make this decision, but there were surprisingly few resources available showing real post-mastectomy pictures. Especially in younger women.

One day on the Komen message board a photographer named David Jay posted that he was looking for young breast cancer survivors to participate in “The S.C.A.R. Project: Surviving Cancer, Absolute Reality”. After an inquiry he told me he wanted to portray through photography the cancer experience by showing the visible scars that are symbolic for so many women. He wanted to show the world exactly what I had been looking for. I immediately knew I had to be a part of this unique awareness project. To help other young women who are feeling lost, facing the same reality. To be a positive force.

David and I decided to do a series of portraits….before and after my bilateral mastectomy as well as after reconstruction. In 2007 I flew to New York City with my sister just months before my surgery to do the “before” shot. A year later, after my double mastectomy I flew back to NYC with my father and took the “after surgery” shot. This picture shows my reality: burned from radiation, scars where my breasts used to be and those million dollar chemo curls. These are a few of the symbols in my SCAR portrait. And my sheer determination.

Toni G

Part of my cancer battle plan involved a clinical trial where I had high dose chemotherapy and a stem cell transplant. With my immune system wiped out I was told reconstruction was going to have to wait a year due to a high risk of infection. A year of contemplating (and stressing over) reconstruction options passed. Then, in the short window of opportunity I had to have the reconstruction surgery, I was offered a chance to visit Peace Corps friends in Mozambique. Reconstruction was going to have to wait some more; I chose Mozambique.

Another year went by and I was still breastless. But by then I knew of other survivors, struggling with pain, necrosis, rejection, infection and many other complications that go along with trying to rebuild a part of your body from unnatural parts. The idea that reconstruction was the only way to go was starting to fade.

The SCAR Project evolved and in October 2010 I returned to NYC with all four of my siblings to attend the SCAR Project exhibition.

Toni G. and sibs NYC

I remember walking up to the gallery and seeing the portraits that had become so familiar to me; I’d only looked at them a million times before that night. I felt an instant bond with my SCAR sisters. We shared our stories. We all had similar questions about life after cancer and it was comforting to put bits and pieces of the puzzle together. Especially since we were assembling it without knowing what the final picture looked like.

I didn’t know at the time the impact The SCAR Project would have on me, let alone the cancer community and beyond. I hoped it would change the way people viewed the reality of breast cancer. I hoped it would give women strength to know there is life after cancer, even if it is filled with jagged scars and a valley of doubt. I wanted to be one of those pictures that women could look at and relate. I wanted to be an answer that someone else was looking for.

My hopes for the SCAR Project continue to come true as the exhibit travels, and more and more people find out about it and are inspired by it. It is the powerful force I hoped it would be. And I am so proud to be a part of it.

In addition to NYC I’ve also attended the Cincinnati and Birmingham exhibitions. I’m thrilled it’s coming to Houston this October. Even more thrilled that MD Anderson, the place that played an instrumental role in saving my life, is hosting the opening night.

As far as that “after reconstruction” shot David and I were going to do? Well, I canʼt pinpoint the moment I made the decision not to have reconstruction, but it happened sometime in those years of waiting to have it. It’s such a paradigm shift to have been so gradual. I don’t think I ever really thought of no reconstruction as an option. Our society is infatuated with breasts. “Every man’s a breast man” and 1 woman = 2 breasts…not one or none.

My SCAR sisters have shown me, both directly and indirectly, that I donʼt have to have reconstruction. They encourage me to embrace the new me and to live flat and fabulous like countless other women. And two of my lovely SCAR sisters, Sara and Barbie, have started a Flat & Fabulous Facebook support group for women who’ve chosen against having reconstruction. I continue to find comfort in communicating with women who have walked in my shoes. That finding other women who have walked in similar shoes was so very difficult is the very reason the world needs The SCAR Project. I needed the SCAR Project. And I know I’m not alone.

Gravity

[When I stood before my guest blogger ‘s SCAR portrait at the first SCAR Project Exhibition in NYC in 2010, it was the first time I really faced another  woman whose [Surviving Cancer.] [Absolute Reality.]  looked like mine. I knew so little about breast cancer when I was diagnosed in 2008, that I didn’t  know that no  reconstruction was even an option any woman ever opted for. The one woman I knew who’d had a double mastectomy, did it prophylactically with immediate reconstruction. In my case there weren’t really options. The best course of action was to wait until after surgery and chemo, to evaluate the reconstruction question: 2B or not 2B?   When I  met Toni at the Cincinnati Exhibition I produced in 2011,  she was still the only other woman I knew who had been there, done that, had to buy a flat new t-shirt like me. I was eager to learn her story and to share it here.  Now, especially in light of the recent Facebook controversy over SCAR images, and of upcoming exhibition news, I’ve asked my flat and fabulous SCAR sister Toni G. to share her SCAR story. Here is the first of two parts.]

Toni G

Guest Post by SCAR girl Toni G.

I was sitting in a tent at Zion National Park when I got the news. The voice of the surgeon who had biopsied a mass in my breast the week before came through my cell phone: “We need to talk”. My heart sank.

I had breast cancer. I was 28 years old.

I’d already planned out my vacation to Utah for the spring of 2007 to celebrate passing the doctoral candidacy exam—a feat that would allow me to continue pursuing my Ph.D. in Molecular Biology and Biochemistry. But  experiments didn’t cooperate, and I’d had to postpone the exam and take my “celebratory” vacation before I even answered one question.

And now this woman was on the phone saying words horribly foreign to me. ER+/PR-/Her2-. Grade 2. BRCA1/2-. Two IDC tumors measuring 3 and 5 cm.

More unfamiliar terms followed as she proceeded to tell me the course of treatment. I sat in silence while she described, in what seemed like one breath, oncologists, mastectomy, chemotherapy. When she spoke the word radiation I finally lost it.

My space-time continuum had just been warped by the gravity of cancer.

She wanted me to see an oncologist that day, but I was 1500 miles from home and a week away from my return flight. I told her I couldn’t that day. Or the next few. I had rented canyoneering equipment for the day and had miles of hiking to look forward to. I would be home in a week. I didn’t call my family. I couldn’t bear to tell them the heaviest news of my life over the phone.

The one phone call I did make was to the chair of my committee. My candidacy exam would have to be further postponed. It turns out, indefinitely—but that’s another blog.

The months following diagnosis were surreal. I’d become so used to people telling me that 20-somethings don’t get breast cancer that I found it hard to believe I actually did.

When I was 20, I found a lump in my breast. My surgeon insisted it was a cyst. No tests? No biopsies? Nope. When the pathology came back benign, I sensed an “I told you so.” He told me that even if I discovered more cysts in the future, I wouldn’t have to have them removed. “They’re normal,” he said.

“They’re normal,” I thought eight years later as I stood naked in front of the mirror slowly tilting my head and squinting. My left nipple looked odd and had gone flat. My gynecologist thought the scar tissue from my cyst removal was causing it. She never mentioned the words breast cancer.

Over the next few months I began to feel a mass in the same breast. I called my gynecologist’s office again and was told to call back in six months to follow up. I convinced myself it was just another one of those normal cysts. So I didn’t worry—for seven long months.
By then, the two masses in my breast were causing sharp shooting pains across my chest. The (finally) worried gynecologist ordered a biopsy.

And then I was in Utah, sitting in a tent…

When I did finally go home and called a family meeting, Dad was giddy. “You’re getting married!?” No, Dad. “You’re having a baby!?” No, that’s not it either. It made the truth more crushing.

My oncologist started me on chemotherapy immediately because the tumors were so large. He ordered a CT scan that came back with abnormal spots in my femur and four places in my spine. After a follow up PET-CT scan, I received a second blow. The spots were metastasized breast cancer.

I was now stage four.

I wasn’t concerned at first. My ignorance of metastatic breast cancer shielded me. But after a week of reading through scientific literature, I found myself shutting my laptop every night in tears, unable to handle any more statistics. Based on my research, I knew I only had a 25 percent chance of being alive in five years.

My oncologist said nothing had changed—not our treatment strategy or my life expectancy. I knew then I had to change oncologists. My life depended on it.

I found my second oncologist at MD Anderson. She cited current literature and was willing to be as aggressive as I wanted with my treatments. She understood my drive to do absolutely everything I could to get rid of the beast that was trying to pull me down.

“Absolutely everything” turned out to be the hardest experiment of my life. Seven months of chemotherapy, a bilateral mastectomy, a clinical trial with high dose chemotherapy and stem cell transplant, and six weeks of skin-scorching radiation to top it off.

It worked. I was declared to have “no evidence of disease”!

Just one week after I finished my treatment, I hiked to the top of the Continental Divide in Colorado. After hours of plodding through the snow and a chance encounter with a majestic mountain goat, I found myself sitting at the top of the mountain. Bald and burned and brave. I had defied gravity. I had defied cancer!

Toni Hiking

[All this defying of cancer and, most likely, more gravity as well, will be continued in Part 2 of Toni’s SCAR story, in which she considers the geography of cancer.]

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