When my grandfather died of lung cancer in 1961, he never knew he had it. In those days, the thinking went, if patients knew they had cancer, they lost the will to live. In 1961, cancer was basically a death sentence; there were so few survivors of any kind of cancer, and lung cancer was the worst of the worst. The agreed upon philosophy was that if the mind does not know, the body can go on a while longer. A linguistic placebo effect. So when my grandmother was told my grandfather had cancer, the doctor’s advice was not to tell my grandfather unless he asked. She was to carry on as if she didn’t know and only talk about his illness if he asked. And he never asked.
My grandfather lived nine months longer than any of the doctors predicted, so maybe he didn’t know. I learned from that family story that what we label ourselves—or what we don’t label ourselves—greatly affects outcome. I think that both my grandparents knew intuitively that words have great power, and their lesson has helped me.
I was diagnosed with breast cancer in 2001 and shortly afterwards with chronic lymphocetic leukemia—yes, lightening does strike twice in the same spot. At my initial visit to the oncologist, I came loaded with questions. However, the first question I blurted out, one not even on my list, was “When can I call myself a survivor?” I have no idea why I asked that question except that I wanted that label survivor and I wanted to know how to qualify. My linguistic placebo effect. Contrary to my grandfather’s time when no one talked of cancer, now cancer patients want to be known as survivors.
My oncologist’s answer was a disappointment. “You can call yourself a survivor anytime you want.” I didn’t want something so open-ended. Where’s the achievement in that? And so after the chemo, the radiation, and drug therapy, I found that that phrase survivor became more and more inappropriate for me. Survivor means you’ve gotten off the island; you’ve been rescued and gone back to your normal life. But with my diagnosis of breast cancer and CLL, there is no going back. Only forward.
Which is why I prefer to think of myself as someone who “lives with cancer”, emphasis on the word “lives”. Lance Armstrong’s “Live Strong” campaign of a few years back has been my inspiration. With the fear of reoccurrence or the worry of my white count increasing to unmanageable levels in my CLL, I can’t pretend that cancer is in my past. But I can put it in the back of my mind and go on. And I intend to go on and live as long as I can.
In my grandfather’s day, it was not speaking of cancer that enabled both my grandfather and grandmother able to go on. Today, it is finding the right way to speak of it that is so important to living.
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