My brother called me today and mentioned I hadn't blogged in a while. His assumption was that everything must be going well because it's my habit to be quiet unless I have something to whine about.
He's right.
First things first. My brother's an actor along the same lines as I was a motorcycle racer. Loyal, convicted, dedicated, but not professional. In the pyramid of pass times, Rick and I are on the lower levels. We stand far from the peak.
But things seem to be changing recently. Seems he has to be in Austin, TX tomorrow morning. His driver will pick him up and deliver him to make-up and costuming. For two days he'll be shooting an HBO movie with Claire Danes.
I'm proud of him. Years of hard work and dedication are starting to pay off. Bravo!
But back to the subject at hand: How am I doing? I'm still losing a kilo every week. I get full easily. I don't like the taste of anything I put in my mouth. I don't like the GI discomfort brought on by food in my system, and I certainly don't enjoy the end result of digestion when it's all said and done.
In the real world, I'm getting worse every day, one millimeter at a time.
See, I'm being weened of the drugs that make me feel good. The intention is to allow my body to produce normal adrenaline and endorphines so I feel genuinely normal. The trouble is that the GVHD (Graft vs Host Disease) is creeping forward daily, so every centimeter I move forward and away from the drugs, the GVHD takes away.
Side effects of the changes come mainly in the form of nocturnal muscle cramps in my feet and shins. My hands cramp too.
On the other hand, I look good. I look healthy. Most people tell me I don't look like a cancer patient. I take that to mean I'm progressing as well as can be expected.
Side Note: Ed had a seminar in Seattle most of last week. He spent 6 days with me, went to Vancouver for two days and is now back in Seattle. Monday is Canadian Thanksgiving. We've been together 10 out of 12 days.
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2 comments:
Andre: When you get a chance, could you speak about how GVHD is controlled/managed and whether or not you are ever free of it? I have a relative who may be going forward with the auto-transplant soon and would appreciate more knowledge.
I am glad for you that you are making progress... would bananas help in the cramping?
Thanks, Annie
I read this and the following post together. Thanks so much for explaining! Glad Ed has been able to be around. Keep up the good fight! (And well done to your brother!)
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