DOI: 10.1097/01.COT.0000313054.56216.6f
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Issn Print: 0276-2234
Publication Date: 2008/02/25
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Excerpt
What you call me—and what I call myself—matters. That's why I feel lucky to have been diagnosed with lymphoma in 1990. Not lucky to face cancer, but grateful the timing kept me from feeling like a victim.
Days after my diagnosis, a newsletter from the National Coalition for Cancer Survivorship (NCCS) made its way to my nightstand. How they got my home address, I'll never know. And I don't care. All that matters is I learned “From the moment of discovery and for the balance of life, an individual diagnosed with cancer is a survivor.”
I remember turning to page two. Head shots of “Newsmakers” invited me to read about ordinary-looking people with identifiers such as “two-year breast cancer survivor” or “seven-year leukemia survivor.” My stomach dropped, as the softening cushion of shock deflated like a popped balloon.
“I'm one of them.”
Queasiness was replaced by a flicker of hope as I scanned their brief stories. Those folks called “survivors” looked and sounded proud and happy after cancer. Because of cancer.
“I'm a survivor,” I whispered to nobody.
The syllables felt strange on my tongue like the first time I said, “I'm a doctor.” Yet I embraced the term, hoping it could guide me.
Despite having cared for many patients with cancer, I'd never before heard the phrase “cancer survivor.” That's no surprise, since the NCCS had been around only four years, fighting an uphill battle to change the parlance from “victim” to “survivor.”
Pockets of patients around the country were still objecting, demanding they be called “thrivers” and “patients active,” to name just two. This word-wrangling seemed like silliness; I had bigger battles to fight.
But as I rode the ups-and-downs of my treatment and then recovery, it bothered me that “survivor” said nothing about my role in my care or my quality of life. I was a survivor whether I was receiving optimal therapy from highly qualified physicians or swigging snake oil bought online from charlatans. I was a survivor whether I was reveling with gratitude for each and every day or paralyzed by uncontrolled pain or fear of recurrence.
The irrepressible internist in me nudged the writer in me to find a medically appropriate adjective to clarify what kind of survivor I was trying to be. One word popped out: “healthy.”
“Healthy Survivor.” The new phrase felt comfortable. Familiar. People talked about healthy parenting and healthy financial investing. Why couldn't I talk about Healthy Survivorship?
For me, it was critical that my new label combine the strength of science-based therapies and respect for my unique needs and desires. So I coined a two-pronged definition: “A survivor who gets good care and lives as fully as possible is a Healthy Survivor.”
As I've shared my notion of a Healthy Survivor in keynotes and writings, the label has resonated with others. With cancer-free survivors and survivors whose treatment options are running out. With survivors running marathons and survivors who can no longer climb a single flight of stairs. For all our differences—faith, lifestyle, job, aspirations—we've shared a sense of hope about both our diseases and our lives, because just surviving isn't enough.
My health care team has played an essential role in helping me become a Healthy Survivor. I've needed them for my medical care, of course. But, at times, I've also needed the guidance of a social worker and the support of a group to help me understand and deal with the psychosocial fallout of surviving.
