[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 full—previous 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 belly—any 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.
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.
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.
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 needed—stress-free, warm, and loving.
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.
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.
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.
[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.]
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.
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.
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.
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.
[Maybe you saw the above SCAR Project image when it went viral on FB in October of 2012. The post accompanying the picture asked: “How Many Likes? For this courageous breast cancer survivor?” Maybe you even liked it? Maybe you didn’t know it was one of David Jay’s SCAR Project Portraits? (The post didn’t mention him, The SCAR Project, or the woman’s name.) Maybe you wondered if the girl in that picture knew she got millions of Likes? (She did know, btw.) But maybe mostly, you wondered about the young woman in the photo—the 1000 words behind her picture. Today’s special guest post is by the courageous breast cancer survivor in that picture, which has been Liked and Shared and Commented on, around the world and back. If you happen to be catch one of the upcoming SCAR Project Exhibitions in Toronto or Los Angeles, maybe you’ll catch the girl in the picture, standing next to hers.]
Guest Post by SCAR girl Candice M.
Dog food, dog food… which should I get? Too many choices… Ring tone called Island Breeze sounds off in my pocket. I can’t even hear it, but because it’s called Island Breeze, I should have been transported to an Island. This is just my opinion; though my opinions never seems to take hold in ways I want them to. Technology. Hearing people always ask me if I set my phone on vibrate. I’m surprised they don’t know the answer to that so I say, “Yes of course then I put it right… down… “. At least I make them laugh. I see it’s a local number so I know it’s not a telemarketing call. Shoot, I hope it’s not the doctor. It’s too soon, he’s supposed to call, like… never. I fiddle with my hearing aid, am I gonna hear him? Oh I hear him alright. Well not the first time but I didn’t have to. He wasn’t going to call if there was nothing wrong. Silly me I thought he was going to make an appointment and meet me in the office like on T.V. Instead, he tells me over the phone, point-blank. Was that a 9 millimeter? Nope, AK-47. And there’s no dramatic fade in or fade out or music, not the whole town running in to see what was the matter, nothing just a big fat row of dog food at the pet store. Oh, Kirstie Alley if we could just go to a place where Nobody Knows My Name…
I scream. I can’t even remember what day that was. It was my daughter’s birthday, I think, or the day before. Oh fun. I also got pulled over, screaming all the way home, illegally calling my mother at the same time. Big black cop doesn’t know what to do with a screaming white girl in the middle of the ghetto but he does manage to let me know I ran a stop sign. I’m sure he loved my response, “I have CANCER what am I going to do??!?” Dumb look on his face…
“well… m’am you still can’t run a stop sign.”
He fiddles, he’s nervous, he doesn’t know what to do. Awkwardly, he slowly backs away from my crazy screaming and crying, and decided a ticket wasn’t what I needed at that time. Good for him, two people survived that day, not just one. I got what I call two chemo tickets in the following two months anyways. My head wasn’t on the road. How could I? My head was… am I going to be alive, will my child have a mother? Its amazing that I survived not just cancer but also my own driving. Yes, unfortunately for you, I still have my license. Yes it’s safe to get in the car with me, just not on days I’m diagnosed with cancer or in a chemo fog, ha!
I have angels watching over the car so don’t worry, come join me for a ride because this is one helluva rollercoaster ride. Stage III. Really?! Ok, I acted surprised, I tried not to be surprised, but I really was surprised anyways. Damned thing was supposed to be a CYST, not cancer!
The part of me that wasn’t suprised that it was so late-staged was because I had been trying to find out what was wrong with Ms. Leftyboobie since I was a kid.
Yes, I said that right, a kid… I told a doctor when I was 17 my breast didn’t feel right. Age 21, I told a different doctor that I was “leaking” fluids. Age 26, I went for a fibrocystic breast study, and no one saw a problem with Ms. Leftyboobie, really?! Then Ms. Lefty B decided to let herself loose at age 29, which led to a 6cm cancer retrieval at age 30 because I guess I was “old enough”. I don’t think I finished blowing out the candles.
Young ladies, you can and you are old enough for breast cancer, no matter what anyone tells you. I found a doctor who saved my life. He said, “I know you aren’t due for a check-up but I’m gonna check ya anyways.” I roll my eyes, oh puhleeeeze. He gets to second base, faster than anyone I have ever met… well, mostly everyone. *wink* I let him find it, I think, go, have at it, thinking he won’t do anything anways, I don’t say a word… instead, he freaks out and says, “You gotta get that checked!” I just glance at him, and with an air of boredom, I drawl almost a whine and ask for the millionth time, “Please, I want a biopsyyyyy.” He says, “Ok.” I say, “Did you just say ok?!” Doth mine hearing aid and lip reading fail me?” (I didn’t actually say that last part). He hands me the slip, I run off to a whirlwind of appointments. It’s just in the nick of time…
Because, here I am five years later celebrating my life and watching my daughter blossom into this gorgeous young lady (and no I’m not one of those parents that just says my kid is the cutest because my kid actually IS the cutest. I have evidence to back that up AND testimonials*.) I have to say going through all that and losing my breasts was devastating. But it taught me how to love myself better, to see that I’m still beautiful. I can prove it via The Scar Project. The photo you see is the very first time I showed ANYONE my scars. I had a little birdie, my breastie bestie, Jolene, who whispered to me that I could do it, and she stood by my side.
I miss her, and losing her still hurts me something good, but I would never trade meeting, loving, and knowing my Pink sisters, for anything.
I prefer to think that Jolene was reborn into this really amazing place with tons of loving people, cheese and crackers galore. I’ve met some really incredible people on this journey. It made my little deaf-brokenboobie life fuller, and worth surviving for. It opened up my eyes to a whole world that many people don’t understand or choose to see. I actually had people say to me, “I wish I had cancer then everyone would pay attention to me” and equally as shocking comments/statments. Also, I didn’t really get attention, instead, I was told by people, to get over it. Regardless, I would never want to feel so sick or so scared again, for any kind of attention.
Breast cancer isn’t a pink ribbon. It’s losing yourself, becoming so sick that your family gets shattered to pieces with you, rediscovering yourself, finding your words, discovering that hair does grow back even if curly and unruly, it does grow back. I ask myself every day could I do that again? I watch my friends doing it. I don’t know. It’s really that hard, so while you are waving a pink ribbon, instead go and really get involved. I had little to no support. Real pink ribbon support should mean help with cleaning, making meals, taking the dogs out, or helping me get out of bed on the days I was too weak to pull myself up, not just a piece of fabric or a specific color or logo. Donating money is nice, make sure you know where it’s going and what they are doing with it. But know what’s really fantastic? Food for my kid, and clean clothes too. Even more wonderful?? Someone to sit next to me for a little while so I’m not so scared.
I look over at my daughter who is sitting and reading quietly, yeah I definitely could do it again. She’s my reason for everything. I shove soy and vegatables at her. Thankfully, she welcomes the healthy food jumble that I foist upon her. She’s a beautiful soul, and a fighter too, but this is one fight I do not want her to face, and through The Scar Project, I am hoping to make that difference for her, not just to be my own voice, but to be hers too. I’m not who I was before, but I am still me (just waaaay better and sexier), and this is my new normal. I am not breast cancer and breast cancer doesn’t define me. Oh and one more thing, reconstruction is a choice. This whole “I love boobies” campaign isn’t the right path. Can’t we all say, “I love women”? That’s what we are trying to save here, right? I will end this with one of my favorite quotes from one of my scar project sisters, Keiko:
“I used to be sad about the scars that run across my chest; now I feel they are a roadmap on my journey of survival.”
*For the record, Candice is in no way exaggerating the ridiculous cuteness of her daughter. I met Sky at a SCAR LA fundraiser and fell immediately head over heels over this enchanting child. Holy crap, we all did. It couldn’t. be helped. She’s that stinking cute.
THE SCAR PROJECT ANNOUNCES TORONTO PREMIERE OF THE INTERNATIONAL EXHIBITION—MARCH 28-APRIL 6, 2014
March 3, 2014—The SCAR Project, the groundbreaking photographic exhibition created by fashion photographer David Jay is set to premiere March 28 at Edward Day Gallery, 952 Queen St West, Toronto Ontario.
The SCAR Project is a series of large-scale portraits of young breast cancer survivors. On the surface an awareness raising campaign for young women, The SCAR Project’s deeper message is one of humanity. Ultimately, The SCAR Project is not about breast cancer, but the human condition itself; the images transcend the disease, illuminating the scars that unite us all.
Sponsored by Rethink Breast Cancer, the world-renowned exhibition will open this year’s Breast Fest on March 28, 2014. This marks the first time the exhibition will be shown to Canadian audiences. The gallery will be open for public viewing March 28-April 6 (closed Monday). Gallery hours are Tuesday-Saturday, 10:00 am – 6:00 pm, Sunday by appointment. Admission is free.
A screening of the EMMY Award winning documentary about The SCAR Project: Baring It All will be shown at the Bloor Hotdocs Cinema at 3:30pm on Sunday, March 30. Tickets are $10. A Q&A session with David Jay will follow the screening. www.breastfest.ca.
For more information please contact :
Jennifer Rashwan, Touchwood PR 416.593.0777 x 205, firstname.lastname@example.org
Alma Parvizian, Touchwood PR 416.593.0777 x 202, email@example.com
For more information on Rethink Breast Cancer visit www.rethinkbreastcancer.com
[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.]
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”.
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.
FOR IMMEDIATE RELEASE:
THE SCAR PROJECT: BREAST CANCER IS NOT A PINK RIBBON
THE ALABAMA PROJECT: THE CIVIL RIGHTS OF HEALTH CARE
TO PREMIERE IN BIRMINGHAM, ALABAMA JANUARY 7-31, 2013
Birmingham, Alabama—December 6, 2012—Two groundbreaking photographic exhibitions shot by fashion photographer David Jay are set to premiere at University of Alabama at Birmingham’s Visual Arts Gallery: The SCAR Project: Breast Cancer Is Not A Pink Ribbon and The Alabama Project: The Civil Rights of Health Care.
The dual exhibition opens January 7 and runs through January 31, 2013. There will be a ticketed opening night gala on January 11, 5-9pm. General admission to the exhibitions, is free. Private gallery tours with photographer David Jay will be available. Regular screenings of Baring It All, the EMMY Award winning documentary about The SCAR Project will be shown throughout the exhibition.
The SCAR Project is a series of large-scale portraits of young women confronting breast cancer shot by fashion photographer David Jay. The SCAR Project puts a raw, unflinching face on young women and breast cancer while paying tribute to the courage and spirit of the many brave, young women fighting this disease. The SCAR Project subjects range in age from 18-35 and represent the often overlooked, group of young women living with breast cancer in our country today. They’ve journeyed from across America and the world to be photographed for The SCAR Project. More than 100 women have been photographed thus far.
The Alabama Project: The Civil Rights of Health Care is a subset of The SCAR Project. In this project Jay documents a group of young women in Alabama, all in their twenties, battling not only breast cancer but the healthcare system itself. From hospital room to the living room, Jay’s poignant images capture each woman’s faith, perseverance, and beauty.
Producers: Cynthia Ryan, Ph.D., Associate Professor of English, UAB Birmingham & John Thomas Fields, Interim Director, UAB Visual Arts Gallery.
Sponsored by: University of Alabama at Birmingham, Susan G Komen North Central Alabama & Susan Mott Webb Charitable Trust
Contact: Cynthia Ryan email: firstname.lastname@example.org phone: 205.934.8600
[If you’ve seen the EMMY award winning SCAR Project documentary Baring It All by EMMY award winning filmmaker Patricia Zagarella, then you’ve already met the fabulous Sylvia Soo. She’s one of the fab four SCAR girls featured in the film. If you haven’t seen it… well… let’s just end that madness with the word “YET” —Ahem, if you haven’t seen it YET then it’s not to late! Just head over to your local Amazon by clicking HERE, then add it to your cart, press Proceed to Checkout, and voilà! Baring it All follows David Jay on an excursion from his life as fashion photographer into a world of young women scarred by breast cancer. Sylvia’s story, her absolute reality of surviving cancer as a young, beautiful, not to mention, fabulous, single woman, is not one most people would even think of when they think of breast cancer. For instance, Sylvia looks straight into the camera and says quite candidly, “How are you supposed to bring that up? Somebody asks you out on a date. Oh, by the way, I don’t have any hair and I have one breast.” Unfortunately, these days more and more young women are facing what they, we, even many doctor’s, all “thought” was “our grandmother’s disease”. That’s why The SCAR Project exists, that’s why David Jay takes their SCAR portraits, and that’s why these young women bare their scars. Sylvia and her sister SCAR girls face the camera the same way they faced breast cancer: with beauty, courage, style, grace, and fabulousness. Yes, it’s shocking to see breast cancer exposed like this, but… deeper than the shock… it’s inspiring to see what lies beneath the pink ribbons: S.C.A.R.s—not scarlet letters but badges of honor—these young women wear proudly and bravely bare in their SCAR Project Portraits. If that’s not cancer fabulous I don’t know what is. With that, I’d like to hand the microphone over to my fab friend Sylvia. Besides being fabulous herself, she manages the Cancer Fabulous web site where she encourages others to be cancer fabulous themselves, she’s working on a book called Cancer Fabulous Diaries, AND she has a short film called Dear Sister which is up for a prize for Rethink Breast Cancer’s Breast Fest coming up this November. All in a fab days work, yeah?! Anyway, please check out Dear Sister and vote for her fab flick HERE for the win! Voting ends September 14. So there’s still a few days left to stuff the ballot box for our Cancer Fabulous SCAR Sister Sylvia!]
Guest Post by the cancer FAB Sylvia Soo
I’d invited spoken word artist, Titilope Sonuga to perform at a charity event that I organized in 2010. She didn’t know me at that time, but by reading through my website’s (www.cancerfabulous.com) online diaries she was able to capture the essence of my motto “cancer fabulous.”
(written for Sylvia Soo)
By Titilope Sonuga
Be cancer fabulous
Be bruised battered
but never broken
carve a space
in this world
to love yourself in
even as they carve
through your chest
pump through your veins
wrap you in gauze
hold it up
like a shield
against your heart
nothing to you
when the odds were
one in ten
one in a hundred
one in a thousand
you were that
that one who
clung to life
when it was easier
off bathroom floors
wiped the tears from
last nights food
from your mouth
and did the impossible
refused to lay down
and give up
surrender or retreat
this is what beautiful
it is raw and uncovered
it is bald and stunning
it is twisted and tangled
It is a crocked line of scars
towards a heart
big enough to
love a nation
this is what beautiful
it is what exists
when we are broken
down past ego
when we are faced
with a body that sends
in the form of
a painless lump
when we are forced then
to cling to a soul
that refuses to
this is what beautiful
So you bare your scars
for us to look upon
so that we can trace them
towards our own understanding
remind us that
there are no
for your smile
there is no
there is no cure
you remind us
really looks like
After reading the poem, one blogger wrote: “I honestly see nothing beautiful about cancer nor having to deal with it.” That blogger didn’t get it.
Yes, there is nothing fabulous about cancer. There is nothing fabulous about having your body scarred, having to take chemotherapy or puking in toilets. There is nothing fabulous about watching a loved one die. However, there is something amazingly beautiful and amazingly fabulous when someone goes through such hardship and turmoil with grace and strength. This is what cancer fabulous is about.
Perhaps it is media that has us thinking that cancer patients are weak, frail baldheaded aliens who are just waiting to die. These past three years I have met many inspiring people with such incredible spirit. These women are not ready to throw in the towel, but they fight for their lives. They have something to say. They are not willing to remain silent. Many of these women are subjects of the SCAR Project.
I chanced upon The SCAR Project during a 2009 Google search. I was 25 years old, and had just returned to Canada upon completion of an overseas contract. One week after I returned home, I was diagnosed with breast cancer. My surgeon gave me an option to choose a lumpectomy or mastectomy. Nights before my scheduled surgery I found the startling SCAR images, and I decided to have the mastectomy.
With one breast, I forged ahead with my summer. I stepped out into the chemo ward with my stilettos and I held my baldhead high. Time continued and the drugs began to take their toll on my body. I stubbornly mascara-ed the very few eyelashes that were left, and painfully slipped into my dignity. Those were challenging times.
While I was on-set of an independent movie, David Jay and I finalized my plans to fly to New York City and participate in The SCAR Project. Upon leaving set, I flew out to NYC. The photo that was chosen was a candid one (at the top of the page). I remember we were laughing at what someone said. I’m overjoyed that my picture does not depict sadness. My journey was much more than sadness.
These days you’ll find me working on my book, Cancer Fabulous Diaries, a collaboration with Rethink Breast Cancer; planning to become an entrepreneur in 2013, and always planning my next travel destination. Looking back on my life, I am amazed at all that I have been through, and excited for all that is to come.
[I met today’s guest blogger at the first planning committee meeting for The SCAR Project DC exhibition. I was instantly drawn to Lauren, not just because of her striking though gentle beauty (as you can see in her SCAR portrait below) but also (as you will see when you read her story) because she is a kindred writing spirit. Since getting to know her something else that really puts the L in Lauren, methinks, is best summed up in some lyrics she posted recently on Facebook: “Until the referee rings the bell/Until both your eyes start to swell/Until the crowd goes home/What we gonna do y’all?/Give em hell, turn their heads/Gonna live life ’til we’re dead./Give me scars, give me pain/Then they’ll say to me, say to me, say to me/There goes the fighter, there goes the fighter/Here comes the fighter/That’s what they’ll say to me, say to me, say to me/This one’s a fighter.”* Which is summed up perfectly, methinks in the slideshow I’ve added at the end of her guest post.]
Guest Post by SCAR Girl Lauren
As a healthy and active young woman, I was under the impression or, in hindsight the delusion, that I was impervious to life-threatening illnesses or events. I simply believed that if I worked hard and was a good person that life would reciprocate in kind. So when I was diagnosed with breast cancer in September 2009 at age twenty-eight, while my husband was on his second tour in Iraq, you could imagine that my naive “vie en rose” attitude quickly shattered. I was left asking the question “why?” Why had this happened to me given that breast cancer is considered an affliction of the post-menopausal woman? Had I done something wrong during my early years (an occasional drink too-many in college) or did I have some genetic component lurking in the family pool that I didn’t know about? But like so many women slapped in the face by cancer, I didn’t have much time to dwell on these feelings. A bilateral mastectomy on October 16th quickly made me realize that shitty things can happen to good people and that there was simply no rationale for it.
Looking into the mirror for the first time after my surgery was a truly humbling experience and visually captured, for me, what “surviving” cancer really meant. That whoever I once was, I would never physically be again, that my new corporeality was an altered one that I would have to get used to. Removing the gauze pads revealed swollen water-filled pseudo breasts and bruises around my incisions. I no longer had nipples, but in their place I had angry looking scars. The one on the right ran the length of my breast and curved up toward my armpit in a smirk, a fitting visage for the “diseased” betrayer of my body. The left breast had a small straight line, like a mute partner guilty by proxy. I also had drains protruding from under my arms, the bulbous grenade portion of which was cradled in a little fabric belt that was slung around my waist. I felt alien, ugly and more like some macabre B-movie octopus than a woman. As I inspected myself in the mirror, my husband drew warm water in the pink plastic basin they sent me home with from the hospital. He gingerly took the washcloth, soaped it up and helped to bathe me and wash my hair. I didn’t have the energy to do it myself.
I couldn’t believe the spectacle I saw reflected back at me and I began to cry. I never had to depend on anyone for this kind of daily activity and yet here we were. I get that in our marriage vows we agreed to be there for one another in sickness and in health, but I never imagined that we would test the theory when we were so young. Extremely self-conscious, I wondered how Mark felt to see my body reduced to something unfamiliar and bizarrely reconstructed. How could he find me attractive anymore when I was so changed, having lost those attributes which society deems so intrinsically feminine and esthetic? While such thoughts may seem superficial, addressing the feelings surrounding the physical alterations of my treatment really forced me to reexamine who I was aside from societal standards of beauty and worth. And though it has been a long and particularly emotional struggle to come to terms with my post-cancer body, what I’ve learned on my expedition through illness has been liberating and transformative – especially when it comes to David Jay’s The Scar Project.
I randomly navigated to the website one afternoon, curious as to what breast reconstruction looked like for other women my age. The first portrait I came to was this stunning image of a pregnant woman with a deep scar in place of her right breast, her fair skin radiantly contrasted against a dark backdrop. I remember how strong and unapologetic she looked. “This is who I am” she seemed to say to me from the screen of my laptop. At that moment, hope blossomed. I, who have yet to have children or to learn if that’s even feasible at this point, could now imagine the possibility that cancer had not usurped the opportunity of motherhood from me because there was Emily, as bold and brave as an Amazon, defying cancer and not only living life but creating it too! Her strength and courage, along with the photos and stories of other SCAR models (a shout out to Vanessa, the two Saras, Eliza, and Barbie) have inspired me to participate in the Project so that I too can do my part to increase awareness of young women’s vulnerability to breast cancer.
I consider it an honor to be a SCAR model; that photo shoot with David meant so much to me. For the first time in a long time, I felt beautiful and actually portrayed as who I truly am. I’ve since realized that my scars are not damaging scarlet letters of disease and imperfection so much as they are physical testimonials of my journey upon this earth. My experience with The SCAR Project has not only facilitated the acceptance of my wounds (physical and emotional) to find the beauty, grace and peace from within, it has also allowed me to transform my breast cancer into something powerful that will impact others. Whether that means showing young women with breast cancer that they are not alone in their experience or illustrating what reconstruction can look like – it definitely affirms that the reality of breast cancer has nothing to do with pink ribbons, commercialism, or walking until doomsday. All you have to do is look into a SCAR model’s eyes to grasp what reality is for the women photographed and to sense the collective frustration that we need to find a damn cure already. While I love my fellow SCAR sisters, there are already too many of us (including women in their teens, early twenties and thirties we’ve lost to this disease) for society to maintain the status quo of what they call breast cancer “awareness.”