The elation I felt for 24 hours after 1st infusion has definitely become an evolving routine of sleep, up and active 3 or 4 hours in the morning and 3 or 4 active hours in the evening. My 3 - 5 hour afternoon period of being down and "hinky" has now stretched to 5 - 7 hours. Adding a second drug to treat cancer and two drugs to treat the high blood pressure side effect has doscumbibulated my body. (I twisted that word around, but I LIKE IT!) I have read myself to sleep almost everyday since boyhood, but now the light goes off as I knee into bed. Readily fatigued now accompanies most of my day and driving is pretty much out.
Hopefully this part of my picture is mostly my body adjusting to powerful drugs and it will get better. My attitude remains mostly of gratitude and hope.
I went back to Maryland for the second infusion - left on Tuesday and returned on Thursday. To me that was in and out: fly early Tue, arrive there 3ish, shuttle to NIH by 4pm and then to nearby hotel. On wed, I get blood drawn, pee in a cup, and early Thu with results I go in for consultation with research team followed by hour long infusion. The last shuttle to the airport was at 2:30 and I got there at 2:29.
So now, the travel people want me to do this in Wed and out Thu. It is nigh on impossible to catch flights that could allow that to happen. Maybe red-eye flights could give them a one night turn around, but even the two night wiped me out. Guess where these bright ideas begin: bean counters upstairs.
The third infusion in two more weeks will be there and then I will do one one with my oncologist here. My daughter Kate insists on going with me for number 3 so we bought her ticket with intention of staying a couple extra days to hang father-daughter as tourists in our nation's capitol. However, NIH pays for my trip only for days of service and staying longer does not fit regulations. Whatever, I, Bill G will figure out how to make this happen my way! Uh ohhhhhhhhh, troublesome words. Okay, I will ask for help from HP in navigating bureaucratic regs.
I'm tired now so I'm gonna stop.
Bill
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Doscumbibulation: (v)Specifically, the feeling in one's body resulting 'from' the taking of experimental cancer drugs, but, more importantly, resulting 'in' the brutal slaughtering of cancer cells. All in all, normally thought to be a fair trade (at least to the human).
ReplyDeleteLet's get that added into Funk & Wagnalls
ReplyDelete