Oh what fun it is to just “wait and see”.  That’s the game plan as of right now.  Just wait and see.  Seriously not that fun.  However I am on the least amount of meds than I have been in four years so that is a very positive thing.  I am feeling better for the most part.  The graph vs host in my mouth is minimal.  My counts are getting back to normal.  All good things so really I can’t complain all that much.  So I guess we will just wait and see.

I am back in remission for now.  No signs of disease in my bone marrow or my spinal fluid.  Bad news is I am getting small signs of graph vs host in my mouth of all places.  Yes, mouth sores type behavior in my mouth.  Not fun at all.  It’s been hard to eat, talk and move my mouth in general.  The sores aren’t that bad, at least compared to when I had them in the hospital, and my docs did give me meds to help the swelling go down and hopefully relieve some of the pain.  It isn’t at this point getting any worse so that’s a good sign.  I didn’t start immunotherapy last week because of my mouth along with some low liver counts.  They decided to take the week off, which I am not going to lie was nice.

Now if I could just sleep through the night that would be extremely helpful.  I don’t think I have slept through the night in over a month.  Sleep, where did you go?  Come back to me.  It’s mostly just stressed induced, but it’s starting to take it’s toll.  I am just tired.  Physically and emotionally just worn out.  Plain old worn out.  I feel a 100 years old.

This upcoming week we may start immunotherapy again for a 3 week cycle and go from there.  I am completely in uncharted territory.  There are no more guidelines or protocols to follow.  I don’t honestly know what is going to happen from one week to the next.  This is all I know.  What could possibly happen and that’s it.  It’s all am educated guess from here.