[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.]
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!
[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.]