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Saturday, September 16, 2017

Leukemia update 9-16-2017

I need to tell all my friends and family how the treatment is going but it's far more than a mouthful so I'm posting the update here and sending everyone the blog address.

Howdy.

On August 4th I started a week of killer chemo. On August 10th I received donor stem cells. I lost weight, my appetite and all my hair but I never felt truly horrible. And I gradually started feeling better, which continues to this day. My blood recovery was so rapid that I was released from the hospital before the end of the month, to everyone's surprise.

Since coming home I developed a weird looking skin rash that the stem cell doc thought was probably mild graft-host disease. An additional immuno-suppressant and prednisone effectively controlled the rash, supporting this theory. Doc says that an early mild case of graft-host disease is the best sign that the graft is working and that rejection will not become a major issue. It's far too early to pronounce me "cured" but so far every sign has been optimum.

If, over the next year, the graft thrives and they can ease me off of immuno-suppressants without major tissue rejection, I'll be considered cured and I should not have a recurrence of leukemia, indefinitely.

Also, if I have any other kinds of cancer cells in my body, the new white blood cells will probably eat them. This is a strange and wonderful benefit of stem cell marrow replacement. The new immune system's DNA is more distant from my mutated cells than my own DNA is, so the new white cells are more likely to recognize the mutations as foreign.

I'm strong enough to walk a block to the bike trail but not strong enough to walk to the nature area and back (1 mile round trip) without overdoing it. But if I keep recovering at this rate, I'll be there next month. I miss seeing the beavers. And the ever-changing wildflowers between home and the pond are magnificent.


Any day now I'll hear an "oodle oodle" sound and step outside to see a few thousand gigantic Sandhill Cranes overhead. My house sits directly in the center of a bottleneck in their annual migratory path. It's a truly breathtaking sight.

Just yesterday, after being home for two weeks, I finally smell enough like I used to that my best friend Henry the cat completely recognized and accepted me. He was all over me purring and rubbing and grabbing and nibbling. A couple of times he stopped, looked at the top of my head and patted it with one paw as if to say, "Dude, what the @#$% happened to your hair?"

The weather has been beautiful. The reeds are fully plumed and the sumac are turning red. I want so badly to ride my motorcycle down to Cedar Lake and the closest real hills to where I live. But it's too soon. I haven't even driven my car yet but I could for a short trip. I've started playing with my synthesizers again and that's a real pleasure.

Chemo made my vision too blurry to enjoy reading, but my vision has mostly recovered now. I still squint a lot and just from writing these few paragraphs my eyes are starting to ache.

I don't think there's anything else to report except that Mary has really shone through all this. It has all been truly too much but she took care of everything anyway.