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Friday, July 22, 2011

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I have multiple myeloma, a rare, incurable, universally-fatal blood cancer. The average survival when I was diagnosed in 1998 was three years with conventional chemo, five years with a autologous bone-marrow transplant. Through a combination of diligent study and miraculous luck, I'm in good shape more than thirteen years later.

I started blogging just before I was scheduled to have a second transplant in early 2009, but there was too much cancer to proceed: I was devastated. By November, my tumor burden was astronomically high: I had run out of time.

So I gambled on a rare and dangerous allogeneic transplant form a matched but unrelated donor, which is when I began this blog in earnest, but after a month I couldn't blog because I had become so weak I couldn't lift my hands to the keyboard. I was hospitalized for four months; nearly died three times; and I continue in recovery more than a year later. But I'm still here and I have my life back.

I wanted especially to describe my struggle with fear. Fear often leads to bad medical decisions: its acid eats away ones quality of life. Fear leads to too much treatment, treatment too soon, or to treatment too long delayed. I hope to explain the tools I use to fight fear to a standstill. I am writing a book on the subject which I hope to finish before I'm financially destitute: who plans to retire at age 53?

Along the way I'll try to provide the context of my life inside of which these tools work.

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