Day 28

Post Matched Unrelated Donor Transplant (MUD)

I'm almost a month old. The clouds are breaking and I feel the warmth of the sun. Yesterday I noticed the morning sun and shadows over our dinning room table and thought, it's nice to be alive, to be in this mysterious wondrous world. It's like being in a coma and waking up. And it makes me afraid of having to go back, this is my year of living dangerously. It will take one year with many milestones for the transplant to make peace with my body. A friend asked me if the cure was worse than the disease and my answer was, I'm very glad the cure doesn't have an on/off switch. My other reasuring thought is, they've given me the lifetime max of everything so at least I won't have to through this again.

My doctor (who I realllllly like) gives me what I characterize as a "Don't be a wimp, eat and exercise, you'll feel better" motivational. Which for me is hard but good to hear. And Beatrice takes me on forced marches every day. And you know, I feel better!

On the technical side. I'm taking 26 pills, epogen (sp?) shots, and IV antibiotics at home. Just got the word to look forward to my skin pealing off (like a sunburn) and loosing my fingernails (new ones grow behind them). Have little or no taste buds, everything tastes like cardboard (at best). Beatrice has been incredible trying different foods. She's done, Italian, Indian, Polynesian, and Thai meals. I can smell a little and some tastes poke through. Blood counts are doing well. I was getting platelets every two or three days but this week it seems to be holding steady. The myeloma marker still shows, but they tell me it takes a while for it to go down, and when (if) it starts going up is when they'll give me donor T cells (another bullet in the gun to kill the beast).

Looking up,

Ty