Monday June 10, 2013
100 STONES DONE ONE TIME

OK, weird title I know but it fits for me.  One of my favorite post-apocalyptic movies is "Blood of Hero's".  It revolves around a gladiator type game where time is kept by throwing stones at a metal board.  One hundred stones per period.  I've just finished my first period.
It's been and interesting day.  I got the bone marrow biopsy around 11 this morning after giving up about a dozen vials of blood at 4 AM.  Results won't be in for a couple of days.  The dietitian came in about 12 and had great news.  I get to go on the clear food diet and gloriously they think the GVHD is down to Grade One.  Best words I have heard in a log time.  Lunch came and the beef broth, tea and jello were delicious.  Soon afterward my stomach was gurgling.  Just checked my ostomy bag and I was pretty much full.  More output than in days.  That is very much not a god thing.  That output has to go down so that they can reduce the steroids that I'm getting (80mg day).  The nurse practitioner says to just watch it over the never couple of meals.  This was the first meal in almost three weeks so it may settle down.  Oh man do I ever hope that is the case.  So I'm staying upbeat about it.  We'll see what the next few days tell.
On that note let me pass on the one thing of which I am certain, especially for those of you on a journey similar to mine..  Worrying does not make anything better.  Often it can't be stopped but you have to try. I have cried more in front of people that I would never let me see like that that I can count.  Steroids have a lot to do with it so you can't stop it but don't let it take over.  This disease is a tough thing to deal with and honestly there are days when you just can't but those days pass.  The best I have done in several days is that one lap around the unit, but it was a full lap.  Two days ago I barely got out of my chair, but with a little help from Pauline I made it up and did a lap. It's not much but it is something.
So hang in there with me guys and we'll get thru this.
And to the lady whose boyfriend was just diagnosed, please keep in touch.  That is a big reason for this little effort is to help give some idea of what you may have to go thru.

More news to come.  Lets hope it stays on the upbeat side.

Boone

UPDATE..It seems I misspoke about the Grade One.  I am trying a Grade One diet but the GVHD is still Stage Four.  It seems that they never downgrade the level of the disease. It may be cured but then it becomes cured GVHD. Seems odd but apparently that's the convention.  If they can cure it then I couldn't care less what you call it.