A little panic

Mom is doing great.  She is meeting with the doctor today to get the radiation plan.  I guess if you have to get cancer it's nice to get one they know how to cure.  And for which the treatment is not too abusive.

On the other hand I am into some graft v. host issues that are beginning to scare me.  I somehow thought once you're through the transplant, you're good.  I vaguely remember warnings about long term GVHD problems but only vaguely.

In my face constantly are pain and restricted movement in my joints.  I can neither flatten my hand nor make a fist without a lot of grimacing.  The more I move the looser I get but every movement hurts.  Every step, every standup-sitdown, every bend over, every reach begets teeth gritting.  Some days seem to be worse than others, but it's becoming discouraging.  At the clinic Wednesday Julie explained it as a thickening of the tissue, in this case the skin.  She classified my situation as 1 on a 1-3 scale.  I can regain the flexibility but I will have to work at it.  Yoga or Pilates every day.  I have a one pound jar of cortizone cream to rub into my joints.  Regular massages.

I haven't decided if the good and bad days are real in terms of more or less pain, or if it's a change of attitude.  Seems like with K-State's fantastic win last night today would be a good day [in the case of attitude] but today is ultra painful.

Other things to worry about include elevated liver enzymes.  Julie ordered a CT-scan of my belly to have a look at my gall bladder.  oops!  no gall bladder anymore.  So McGuirk referred me to a liver specialist.  I need to look up that moniker, hepatologist or something.  I worry that my liver is thickening and wonder what can be done for that. 

The rubbing in my chest every time I draw a deep breath has just been a result of some really bad pneumonia and scarring.  But added to the joint pain and liver concerns I worry about that too.  Are my lungs afflicted with GVHD?  On the up side I don't have any trouble breathing or drawing a deep breath and it doesn't hurt.

Have I survived this incredible journey of the last 18 months to be eaten by GVHD?

I have resisted doing research on this or going back and rereading the warnings from before the transplant.  Most of the time I want to work through it in a logical fashion.  For example I had already scheduled daily Yoga sessions before Julie prescribed them this week.  I have changed around the vitamins I'm taking and added more.  I have pretty much stopped taking the Gabapentin for the tingling in my feet. 

That will be the first plus here, the tingling in my feet is much much better.  It's hardly painful anymore, just annoying.  The next plus will be that deep soaking, jetted, bathtub that Walt put in when my bathroom was redone.  And that's where I'm going to be for the next half hour.
~Cathi