Medical Musings: References and Links

Major Organizations:

International Myeloma Foundation
Multiple Myeloma Research Foundation
PubMed
Mayo Clinic
IMF Honor Roll

Blogs and Forums I Recommend:

Being Cancer is a list of all known blogs
Good Blood, Bad Blood John writes lyrically.
Multiple Myeloma Forums
Margaret's Corner
Myeloma Planet is a blog of blogs, so to speak

About Me

I have multiple myeloma, a rare, incurable, universally-fatal blood cancer. The average survival in 1998 for the newly-diagnosed 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 nearly fourteen years later.

I've had just about every treatment medicine has to offer: chemotherapy, autologous transplant, allogeneic transplant from a matched but unrelated donor (a MUD), and a donor lymphocyte infusion (DLI).

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

So I gambled on the rare and dangerous allogeneic transplant from 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 nearly three months; nearly died three times; and I continue in recovery more than a year later. My wife was once told to make "final arrangements" for me.

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 too soon, or to treatment too long delayed. I hope to explain the tools I've developed to neutralize it. 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. Also, I can't resist the occasional digression.

Pages

References and Links