Archive | April 2012

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

[When I produced The SCAR Project Cincinnati exhibition, so many people came up to me in tears, telling me how much the SCAR portrait of “the girl with the red hair and a tear” moved them. Getting to know Sarah and many of the SCAR girls (as many of them call themselves) this past year as I’ve begun coordinating exhibitions and consulting with those trying to bring The SCAR Project to their cities/countries, has been one of the most beautiful things in my life. It is my great honor and pleasure to introduce you to “the girl with the red hair and a tear.” Obviously her portrait wrote the book on the whole picture being worth a 1000 words. But here are a few of the words behind her SCAR portrait. Her own words: my friend, survivor sister, SCAR girl, and guest blogger, Sarah.]

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“It looked . . . ” my surgeon twisted her face and looked towards the ceiling, searching for words to describe it. “Well . . . it looked like a flower.”

I don’t know if that made the news more, or less, disturbing.

The growth, blossoming in the ducts of my right breast, could be compared to something beautiful.

I don’t know why this was first question that fell out of my mouth when my doctor told me I had cancer but – before my brain could wrap itself around that word – I needed to know what this thing looked like. What was I battling? Getting a vision of something usually provides some context. Instead, I only got an image of clubbing some innocent peonies. This really wasn’t going to be much good, in terms of gearing up for a fight.

This was the beginning of nine months where cancer consumed my life. I know that I am lucky that it didn’t take more. Though I was diagnosed DCIS (ductile carcinoma in situ) and staged at zero, the cancer was all over the place like weeds in an untended garden plot.

Not one doctor could tell me what causes breast cancer in a fit, otherwise healthy 28-year-old, or what causes it to be so aggressive in younger women – in my case filling up the ducts and heading for my chest wall. After three excisions, and an argument between my radiologist and her MRI technicians, they continued to find more cancer, through three quadrants of my right breast.

Each new discovery gave me less time to make decisions, but I knew a mastectomy made the most sense.

All of my doctors were women and each one felt like some strange mother figure that was going to take action to make everything better. My reflex to this maternal agitation was to beg for more time. I also wanted to see more than one plastic surgeon about handling my reconstruction to figure out what my options were.

The first doctor I saw entered my exam room with a small cadre of un-introduced interns. I had a list of questions, all related to different reconstruction methods. He gathered some of my fleshy stomach between his fingers, examined my exposed breasts, and simply stated that there wasn’t enough there to reconstruct even one breast to it’s current size. But maybe with the addition of an implant?

The waiting room of another doctor contained a bowl of chocolates bearing the office logo. I snuck a few into my pocket before my partner and I were ushered into an exam room that looked more like an upscale hotel room. We were met shortly by a youngish looking doctor. Slick, attractive, but warm and kind. He didn’t take my insurance. We weighed options and ate chocolates as we rode the elevator back down to the ground floor.

The reconstruction surgeon I chose came recommended by a friend. She only did medically necessary breast surgery and she also worked on hands. She had a southern drawl. She spoke to me, not at me. She included my partner in the discussion since I had seen fit to bring her there. I told her that I didn’t necessarily need to have the whole breast removed, but I was afraid not to. When I eventually decided to remove my healthy breast as well, she said that she would do the same thing. I knew I was in the right hands.

Frightened, for my health, longevity, and lack of symmetry, my left breast was removed prophylactically less than six months after the cancerous right one. To get rid of the cancer, even between the discovery of DCIS in locations that weren’t originally identified, and a scare that resulted in a PET scan and a bone scan, it only took nine months. The reconstruction took far longer to be finalized, well over a year, and this is without the addition of the best approximation of nipples that money can buy.

I did it because wanted to look like myself. I wanted to fit into my clothes. I wanted cleavage. Why not? I had it before. I’ve had breasts since I was twelve years old, and it was my body, damn it. It had taken me 28 years to get comfortable in this skin. And now? Now I was angry that the most rational decision I could make led me to want as little change as possible.

Later, after the cancer was gone, after I looked normal in clothing, I went into a six-month funk. I would never truly look normal. Changing at the gym sent me into a cold sweat. Buying bras was a nightmare. Forget about looking sexy when I had lost all feeling at the surgery site.

I know those are superficial concerns, but still they are very real. I don’t have children yet. Can I have them? And without the cancer returning despite my best efforts? And surely if I was so blessed to give birth the first person to tell me “breast was best” would be met with a fist to the jaw, I’m certain, before I even realized what was happening. And my partner, should she choose it, would be stuck with this body, these alien protrusions from my chest for the rest of her life. It was not life or death, but it was a kind of suffering that made me, and on a bad day still makes me, burst into tears on a whim.

The SCAR Project shows this less than pretty pink-ribboned side of breast cancer. It reveals the new reality young women face, having confronted breast cancer. They look at you from their portraits as is . . . reconstructed or not . . . alive, giving the big “fuck you” to cancer, but scarred. Some have even used the word “butchered” to describe me and the other women in the photos.

The SCAR Project photos give voice to the suffering that is done in silence. Every cancer patient is applauded for staying positive, but sometimes that is too big a burden to bear. There is a real-ness in these photos, as the camera captures milliseconds of a long, multi-round fight. There is room to breathe, to expand the excised chest – because for a few moments it is only you, and that camera, and the memory of where you’ve been and what lies ahead.