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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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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 diso...
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 diso...
 
 
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12:22 AM on 10/07/2011
The article makes you stop and think. BUT I will say it now and said it already, there are many other killer diseases there that deserve wide media attention, not just Breast Cancer. God bless the ones fighting this disease each day, through.
photo
HUFFPOST SUPER USER
PaulaMV
Tea parties are for little girls.
11:43 PM on 10/06/2011
A very beautifully written article. I understand the author's feelings, but I have to say that I do not mind calling myself a breast cancer survivor. The term survivor makes me feel empowered and more in control of a terrifying illness that I really have very little control over. To me, being a survivor means that I lived.
10:53 PM on 10/06/2011
Where were all the HuffPost stories last month (Prostate Cancer Awareness Month) about prostate cancer survivors? I don't recall seeing any.
10:38 PM on 10/06/2011
Each person feels differently about their journey through cancer and treatment, but I am a survivor of leukemia and a bone marrow transplant. While I realize that it was a team effort - doctors, nurses, family and friends - I worked hard every day for 2 years to get better and be cured. Did luck play a part? Of course, but the fear, the pain, the total disruption of life made each day a challenge to which I measured up. I am proud to be a survivor.
09:48 PM on 10/06/2011
Most of us do not define the term or implications of "survivor" as this woman does, and I deeply appreciate and understand that. However, some of us, refusing to be defined by an illness, taking charge, being our own self-advocate, and doing the best we can with failing bodies, informed decisions, and an imperfect health care system, do believe that "survivorship" is a good and decent goal, looking forward and never backward. I call myself a "wannabe survivor" and have moved on in my journey....
09:47 PM on 10/06/2011
Thank you for putting into words exactly the way I've been feeling as "someone whose been treated for Non Hodgkins Lymphoma."
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dbrockskk
09:06 PM on 10/06/2011
what do you do if you have no heath insurance?
03:30 AM on 10/07/2011
I was diagnosed in April with lung cancer. I did not have health insurance, since I am/was a self-employed software contractor and was repeatedly denied due to a pre-existing condition (COPD.)

I was surprised when each doctor I went to totally ignored my lack of insurance and offered to get me into treatment immediately, saying we'd work out the financial issues later. While I realized this could be potentially financially devastating, I was nonetheless surprised that not the first doctor dismissed me.

The GOOD news is that I found a plan sponsored by the US Government (Google "PCI Plan") and they covered me immediately even though I had already been diagnosed with cancer. My premiums are $307 per month, and there is a $2000 deductible plus 20% co-pay to a max of $5950, yet they covered me IMMEDIATELY, and to date, have paid out over $100,000 for my treatment.

Even though I am a libertarian and mostly opposed Obamacare, this insurance (provided through the same legislation covering Obamacare) has been a Godsend.
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dbrockskk
09:03 PM on 10/06/2011
God bless
08:52 PM on 10/06/2011
Thank you for this incredibly thoughtful article. While I have respect and compassion for those I have known who have had cancer, I resist calling them "survivors" - I feel that it defines them in terms of their illness, minimizing all the other things that they have done in their lives. But, if they choose to use that word for themselves, I respect that as well.
08:48 PM on 10/06/2011
Finally, someone who feels like I do about being a breast cancer survivor!! I have always felt funny calling myself a survivor too. I was treated for breast cancer and was one of the lucky ones. Period.
08:45 PM on 10/06/2011
HOPE FOR A CURE !
EDUCATE , ADVOCATE , AND ERADICATE !
This is a breast cancer statement for the VBCA .
I know you screen the comments then
Why won't you put this on the board?
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bmitche
08:38 PM on 10/06/2011
I wish you well.
08:37 PM on 10/06/2011
HOPE FOR A CURE !
EDUCATE, ADVOCATE, AND ERADICATE !
08:35 PM on 10/06/2011
if you survive anything traumatic in your life, you are a survivor. period!
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