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Elizabeth Rosner: Why You'll Never Hear Me Call Myself A Cancer 'Survivor'

Posted: 10/01/11 08:03 AM ET

By Elizabeth Rosner

Growing up in America as a daughter of Jewish parents who had managed to live all the way through World War II in Nazi-occupied Europe, I learned that certain words carried disorienting and sometimes utterly disturbing associations. "Camp," for example, innocent enough to most of my peers, wasn't modified by standard accompaniments such as "summer" or "sleepover," but by the impossible-to-explain "concentration." It took me most of a lifetime to understand why the term "survivor" could have no resonance without its partnership with "Holocaust." Now that I am a so-called breast cancer survivor, I'm beginning to comprehend the reasons that each of my parents avoided the "S"-word, even when referring to the fate they had amazingly escaped.

Sadly, my mother is no longer alive to confirm or deny my interpretations. Diagnosed with breast cancer at age 65 and succumbing to the disease a mere 5 years later, she couldn't know that her second daughter -- me, that is -- would be following in her BRCA-linked footsteps. (For those of you fortunate enough not to recognize the acronym, BRCA is the name for the genetic mutation found too commonly on too many Eastern European Jewish X-chromosomes, promising a higher than average risk of developing breast and/or ovarian cancer.) Since my mother didn't "survive" breast cancer, I find myself profoundly uncomfortable with the designation now, and it's my father who helps me see why.

About his wartime years, he chooses to say: "I was in concentration camp." (Note the absence of the article "a"? This is one of the only instances in which my father's native and mostly inaudible German accent seems suddenly obvious and unmistakable.) When I ask about his preferences for phrasing, he carefully explains, "I don't feel right about sounding as though I did something smarter or better than any of the other millions who died. I was just lucky."

I may have heard this before, but in the new light of my near-death experience with breast cancer -- the disease that claimed not only my mother but also some very dear friends, the disease I seem to have successfully treated with surgery, chemotherapy and radiation -- I am discovering my own ambivalence about language, too. "I went through treatment for breast cancer," I find myself saying, deliberately leaving out the "S"-word. "I had breast cancer."

The fact is, I almost didn't make it through treatment at all. My initial pathology report was badly mishandled, and an area of invasive cancer was "overlooked" by the pathologist. A second opinion, one I insisted upon despite the casual confidence of my surgeon, revealed two weeks later that the original diagnosis of "in situ" cancer was a mistake. When a second surgery, in which lymph nodes were examined, did indeed prove that the second opinion was accurate, I decided to proceed with chemotherapy and radiation -- treatments that I would have otherwise gone without. Quite probably the spreading cancer would have killed me.

Sometimes I think, "Is this what happened to my mother?" A misdiagnosis? A failure to pursue that second opinion, to go for more aggressive treatments? It's too late, of course. And there is simply no way to know.

Somehow, here I am, alive and well -- and like my father, who admits that it's often hard for him to fully enjoy his life because of his grief for the millions who died -- I remain aware of the tragic (and perhaps even preventable) death of my mother. She isn't here, nor are friends whose cancers weren't detected early enough, or couldn't be treated effectively. Sometimes, that awareness makes it hard to celebrate my recovery without feeling the random accident of it all.

I think of the way my mother didn't like to call herself a Holocaust survivor because she'd never been deported to a concentration camp like my father had been. She and her parents had been able to escape from the Vilna ghetto and hide themselves in the Polish countryside, waiting there until the Russians liberated the area in 1944. Sometimes she and my father marveled at the strange irony that my father was entering "camp" just as she was being freed from her hiding place. They met a couple of years later as refugees in Sweden, eventually making their way to a new life in America.

My parents were married for nearly 50 years, and as far as I can remember, the word "survivor" always made them both uncomfortable. Now, it's my turn. I lived through something that almost killed me, enduring indescribable layers of pain and fear and loss. I watched my mother die and I've seen friends die too. I'm here in spite of mistakes. I'm here thanks to the help and love of friends and family, doctors and nurses, drugs and herbs. I'm here by the grace of strangers online with whom I shared worries and victories, strategies and prayers. We were in it together, and we were in it alone. Some of us got out alive, and some of us didn't. I am simply one of the lucky ones.

Award-winning novelist, poet and essayist Elizabeth Rosner is the author of "Blue Nude" and "The Speed of Light." She lives in Berkeley, California. To buy her books and to read her blog, visit her on Red Room.

 

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