Summary: Slow and steady is gonna win this race. Very slow. Very steady. White count is hovering. Bowels are a battle ground. I’m getting photopheresis now, a sun tan machine for blood. They pull out a volume and use light to kill specific troublesome cells.
Calendar: Over one month since my admission on May 2nd. Day Transplant+67, post infusion. Whereas once the goal was to become an out-patient at the village, now the goal is to get me completely ready to move home. From pill taking to self care. I’m not even close right now. They call the diarrhea ‘Severe’. I have a spreadsheet of the days here.
The Key: No more diarrhea.
Bowels: Angry, angry, angry. Diarrhea day 50. It doesn’t need saying but, this is getting really old. Cramps are nasty. Brutish. At least I still have the The Shiny Candy-Like Button that delivers dilaudid/hydropmorphoned on demand. Doesn’t solve anything but it saves me a much pain.
Outlook: The doctors are cautious and no dates are being offered for getting out of the hospital. But they say ‘good’ most days. Steroids at 50 mg twice a day.
Skin: I have a slight and harmless rash, no itching, which is a good sign that the new immune system is waking up. I am bloated like soggy breakfast cereal and need to drop a couple of liters. My weight is 84d kilos which is quite about what I am in good shape.
Weariness: The fatigue is serious. A shower is a lot of effort and I rest afterward. Talking wears me out in about ninety minutes. Physical therapy is just some steps, walking in place and sit/stands, about 20. I did not get a bike. I must be monitored anytime I use a bike. So I choose group therapy over bike most days. I sit to shower and brush my teeth and save energy.
Sleep and Steroids: I’ve been getting broken up but sufficient sleep and that’s despite a medium dose of steroids twice a day. If the bowel thing turns out to be double trouble, c.diff plus graft vs host disease (GVHD), they will go to the high level dose. Steroids help mitigate the symptoms of GVHD but are the source of other troubles like killing a lot of platelets.
Entertainment: If there’s one thing I know how to do, it’s keep busy. I get cards by surface mail and send em. Learning the Uke. Strategy game with friends over the net. Tons of music listening time. Meditatation/Visualization after phone calls, shower or just to ward off irritability. Quite a pile of pretty folded paper here now. Wrote a ropey math program for the browser, just for fun. I literally could use more hours in a day and I never watch television. I do put on groovy screen savers on the PS3 or Ms. Melton’s superb disk of visuals and of course Planet Earth by the BBC. Accept no substitutes. My mythology: I’m on the extreme monk path, rattan sticks and all that.
Vistors: Mom and Dad most every day. Judy once a week. Drop an email if you’d like to visit. The timing needs to be good.
Ok, I don’t know who’d read all that but it’s a full status.