AN INTERESTING DAY

Today was make up photopheresis day for missing Monday's treatment.  That means I got platelets a couple of times in the night.  As is often the case on such nights I slept well through the first part but by the time they hang the 3 or 4 AM bag and take vitals (blood pressure, O2 count and such) I am awake.  Sometimes to awake to go back to sleep.  This was such a morning so at 4:30 I was wide awake.  I did some early exercises and fooled around on the computer.  Kathi arrived about 7.  The rest of the morning was uneventful.  Dr. B made rounds about 11.  I was asleep when he came in.  He is adjusting the drug regimen a bit, the actual change was over my head but it seemed to make sense.  You have put your trust in these guys and I have.  I'm still on a full, if bland diet.  Still no caffeine but at least I get coffee.
The light treatment was scheduled for 1:00.  The girl from PT showed up about a quarter till and wanted to walk.  When she found that for the second time she would be overridden by the photopheresis she acted a bit pissed off.  She started bitching about how I wasn't walking and seemed even more put out when I told her that I had not been able to get out of bed by myself. I got a bit short with her and suggested that she coordinate her schedule better because there was nothing that I could do about it and that I was doing all the stuff I could with the rubber bands.  After all I'm the one that wants out of here and I want it a hell of a lot more that she wants me out.  She'll be back tomorrow.  I'll let you know how that goes.
The photopheresis went off without a hitch.  I had finished lunch just before it started and that turned out to be good for me but not so much for Nurse C who was running it.  Lunch went through and into the bag really fast, filling up four times in rapid succession.  Since I was tied to the relatively short lines of the machine she had to do all the work.  But she did well and there were no problems.  After she packed up and left I had a nice nap waking up just in time for supper; tilapia, one of dietary's better dishes.  Despite my best efforts I still could not stand to use the urinal or empty ostomy bag a few times and the evening proved no better.  I believe it due in large part due to the amount of steroids I'm on.
After supper I managed to stand up and dealt with bodily fluids and climbed back in bed.  That took a lot of effort in my part and  wound up flopping back in the bed and falling asleep leaning up against one side board for about an hour.  When I woke up Hand R were coming the door to visit.
I greeted them and sat up.  I mentioned that I must have slept wrong because mu left eye felt a little funny.  H looked at it and saw that it really red and R noted that it looked like a blood vessel had broken.  H went to get Nurse T who in turn got Nurse K , who is charge nurse for the evening, and they decided to talk to the Dr. about it during his scheduled 9PM call.  I took a photo to show you fine folks and when I did I got to see just how swollen the eye had become.  It was then about 8:30.  H went to get the Nurses who in turn went back to call Dr. B.  He ordered platelets and I ordered an eye patch.  It appears to be just a burst blood vessel, no pain, no impaired vision other than the swelling.  It just looks like this.

 



 It looks a lot worse than it feels but the eye patch doesn't give me any sort of cool pirate vibe.

 



So I've had a number of nurses come by to see what Mr. Gregory is doing now and I'm sure I'll be the talk of the floor again in the morning.  At least it is not something that is a setback or maybe even related to the GVHD.  Just one more thing to get over.  Maybe I'll tell the PT girl that I can't see well enough to walk.  That might be fun..
The night did end on an high note.  Nurse A is the one with whom I have been swapping music.  Last night she went to see Brown River Return at a small club downtown. The are one of the bands that she turned me on to that I really liked. The entire band autographed a copy of their new CD which see presented to me.  Very cool.  I've already listened to the CD and it is quite good.  It's called "Up, On and Over".  Give it a listen.
So on the whole a very interesting day.  I hope yours was as well.

Boone