I'VE HAD BETTER DYS

The best thing that I say about today is that tomorrow has to be better.  I slept well last night after midnight but was still quite tired this morning.  Kathi was here and so was breakfast by the time I woke up.   J from PT arrived fairly early, which I hate and don’t hide well (the early part not the PT part, well mostly not the PT part) and after my usual whining about it we did manage to do two half laps.  Nothing earth shattering but much better than I have been doing.

Dr. B and entourage showed up about 10:00.  He’s putting me back on the TPN.  Without it and with my system just passing the food that I do eat straight through I’m back down to 114#.  I am as skinny as a rail, it’s really pathetic looking.  He is also still holding off on the photopheresis until the damage to the eye clears up.  That may be another week or so. The major news is that he is changing the steroid regimen.  He explained the details but as usual I basically understood them at the time but could explain them to you now.  It is a different steroid, apparently a newer one because the nurse was not very familiar with it.  My take-away from the visit was “what we are doing isn’t working so we are going to try this”.

It was right after Dr. B left that PT showed up.  When I turned the corner to come back toward my room I thought I saw Kathi talking with Dr. B in the hallway.  After getting back in bed I asked and yes she had gone out and talked to him.  My take away was correct.  They have four typical methods for treating GVHD and this new method is the fourth.  If it doesn’t work then, well there is no fifth.  The next couple of hours involved a lot of crying and holding each other.  The nurse came in at one point and found us lying together.  She had come to check my blood sugar but decided that it could wait. Finally Kathi had to go so she could deal with the critters at home, that I miss dearly, and other assorted duties.  I ordered a dose of pain meds.  The nurse didn’t even ask about the level of pain.  She knew it was at least 10 and why.

So while nothing is imminent the time has come to ponder the possibilities and plans for things we don’t want to ponder or plan for.  Dr. B, it seems to me, tends to be more pessimistic so we will wait to talk to Dr. S next Monday when he returns from vacation to see what he thinks.  In many ways I am still just like any of you.  I could drop dead tomorrow of a heart attack unrelated to the disease.  In some ways I am safer, i.e.  I cannot die in a car crash unless the car is flying and can make a sharp turn in midair at a high speed.  For the other side of the coin we just don’t have enough information and even then it is just for possibilities.  I could still get rid of the GVHD.  Dr. S told me about a patient he had here for more than a year who recently kick the good Dr.’s ass at some sport.

Boone