04/05/2012 11:55 am ET

Desperately Seeking Survival

When I was 13, my parents drove us 45 minutes from our home on a rural wooded peninsula to a suburban-mall movie theater to see "Desperately Seeking Susan."

I wasn't eating popcorn: One year after a surgery that removed a portion of my jaw, I could barely chew. This was just one of the small humiliations that had accumulated after I had been diagnosed with terminal thyroid cancer, undergone extensive surgery and testing, survived a recurrence of the cancer, and traded a death sentence for the murkier and far less glamorous reality of a rare genetic disorder. My neck was sliced halfway round, my jaw riddled with holes, and I had been diagnosed with a second, separate and distinct, type of cancer. The treatments had just started to remove the skin cancer ravaging my torso. Over the next three years I would have nearly four hundred biopsies.

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