Well as Monte Python would say, "I’M STILL ALIVE, YES, I FEEL LIKE DANCING"

Day 300

Post Matched Unrelated Donor Transplant (MUD)

Well as Monte Python would say, "I'm still alive, yes really, I feel like dancing". It's been a bit over 300 days since the transplant. What a ride. Looks like I'm the only survivor out of 18, mind blowing, but someone has to get through, maybe me. I'm attaching a section of my doctors notes about the last 10 months for anyone interested in the gory details. It seems easier than it sounds, but then I only wait to forget so maybe my memory is fading (I hope). Today is good, it's so wonderful to be alive, here.

My taste buds and appetite are fully functional. Beatrice is spoiling me silly. Had some mysterious maladies that came and went (hives, numbness) without the docs figuring them out. Right now I'm just along for the ride, everything comes and goes, this cancer, feeling good, feeling bad. I got my first haircut a few weeks ago and immediately went out and bought about $400 in new cloths, very spiffy, including felt clogs and linen slacks. These are the phases of treatment: Very Miserable, sweat pants/old T-shirt, Feeling OK but not trusting it, blue jeans/new T-shirts, On Top Of The World, linen slacks/collar-less shirts (that match!!). So I'm feeling pretty well.

I still have the cancer and it's starting to wake up. The genetically modified donor T-cells didn't do the trick, so it looks like I'm into some treatment soon. Surviving the matched unrelated donor transplant gives me some good options, and is the only known way of going after the cancer directly. I'm so glad to have survived and loading the gun to fight this beast. And if I die, well that's ok too, I listened to my heart and had my journey. A slippery thought sometimes, but one worth trying to hold on to.

Looks like that journey includes a few more months in Little Rock. Hope to be home by October, maybe. I seem to be occupying myself pretty well. The townhouse is great and the computer opens up a world community of support and friendship.

Lets see have I missed anything? My projects are to learn how to sail (through books), keep up to date on organization development and process design (my work), learn French (for when I retire in Switzerland), fighting off the urge to buy an electric guitar (listening to too much Billy Bragg) and my latest project, learning to write with my right hand.

Learning to write with the other (for me right) hand is a real lesson in life. I have a tremor in my left hand. I've had it all my life but this treatment stuff just makes it worse. My right hand is rock solid, so it was time to go back to the first grade. First I started with writing my name. Just repetition, I do it over and over, and almost magically it gets better. Beatrice says its like little kids writing, I take that as a compliment. Who knows I might learn to spell next. Apparently I was a handful in elementary school, so I have a lot of room for improvement. (If only I knew then, what I know now)

My daughter Emily is in the process of moving out on her own and I'm helping her find an apartment and going through the logistics of moving into her own place (all from my Little Rock bubble).

And last but not least I've started roasting my coffee again (thank you Pat Roach). This has improved my temperament greatly. We really couldn't find a decent espresso roast in all of Little Rock.

Hope everyone's life is rolling along, hope to see you all in a few months, eons, maybe another spiritual plane, but somewhere out there in the mystery.

Best wishes,

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Now, as promised, my doctors notes (you may want to close your eyes now):

Diagnosis: Multiple Myeloma, stage Ill-B IgG kappa, diagnosed in January 1995 Received first autotransplant in January 1996, after melphalan 200 mg/meter squared. Poor response to first transplant. matched unrelated donor transplant performed on 9/12/96. Transplant was T-cell depleted after conditioning with fractionated total body irradiation, cyclophosphamide and thiotepa.

Post-transplant complications: Poeudomonas maltophilia in the throat. Line infection with Staphylococcus epidermidis on 9/30/96. Subsequently line infections with Staph epi and Diphtheroids on 10/30/96, 11/27/96 and 12/11/96. AvaBcular necrosis of the hips shown on MRI on 1/7/97. Infection on 1/13/97, with Staph spi and on 4/7/97, with Staph epi again. He had zoster virus of the right chest on 5/15/97. He received

local installation of anesthetic and steroids for post-zoster neuralgia on 6/13/97. Line infection with Staph epi on 6/11/97.

I told my doctor that he left out the part that says "Mr. Chaney is a lovely patient".

Best Wishes,