Sunday June 9, 2013
DAY 100

Wow.  Day 100.  It seems like it should have come long ago.  It is the theoretical  and somewhat arbitrary time since the transplant that the patient needs 24/7 caregiving.  Tomorrow I get a new bone marrow biopsy and maybe some other lab tests so they physicians can put together a sort of picture of where everything stands.  So more details to come but I'll tell you what I know.  At least what I think I know.
As Pauline and I understand it the Leukemia is cleared up.  That is great but it's a frying pan to fire thing.  Now I have the GVHD. They have done a Nuclear Medicine test on the gall bladder and while it has a lot of sludge in it that is not really uncommon in any population and they say not a concern for now.  Liver tests are OK so far but they continue to watch along with all the rest of the lab tests.  Lots of blood draws around here.  My blood sugar fluctuates as lot and I often get insulin shots. I think that is mostly related to the steroids.  My right arm became swollen last night so about 11 I got an ultrasound to look for a clot. The report came back pretty quick, no clot.  Good news but I still needed something to get to sleep. The nurse thinks I need to talk to a counselor and she's probably right.  To be honest I'd rather just get drugged but that is not likely the best of plans.  My arm is still swollen but some other parts are too from the steroids. Those are really making me weak.  Today it was all I could do to stand up from my bedside chair to try to go on a walk.  Finally I was able to get up and do a 1/10 mile lap but that was it.  The plan is to go for another this afternoon and I will do it but being so weak is kinda scary.  I can do the rubber band exercises in bed so hopefully with a little reduction is steroids the weakness will subside.
And basically that is the game plan to fight the GVHD, reduce the intestinal output so you can reduce the steroids.  The GI output is down a lot, of course never enough, so I'm hoping that they can lower the steroids soon  There has been at least mention of get back on clear food next week and that's a start.  After three weeks of nothing chicken broth sounds like heaven.  It's not really but at popsicle and some Jello come with it.
Visitors have been regular but not intense so that have been good.  It's funny but it seems the days that I want to see no one are the days it really helps.
II guess that's it for now.  I want to see what tomorrow brings.  Dr. S has been out of pocket for a while but is supposed to be here tomorrow and I'm looking forward to seeing him.  He's a straight shooter,
Tune in tomorrow and we'll see what we have learned.

Boone