Mar 16, Day +46 Weak for a week

"Just the Facts"-- Moving very slow, very weak,  able to eat a little, rash finally receding, infusion center every day.

Since the halting of the "bad medicine" the replacement medicine is currently being provided by an IV.  This IV need, causes B to have to go to the infusion center every day to get infused.  All that would be fine if we had the appointment information correct, but twice now they have had him coming at different times than was scheduled.  Normally not a problem for most people, but this just wares B out.  He sat for 2 hours waiting today until they called him in.  Then his IV only takes an hour. He just doesn't have the stamina to be sitting around a waiting room to be called in.  Tomorrow we have a big doctor visit and I plan to be there to get the 411 on this past weeks events and a good plan for this next week, meds and all.  My hope is that we can drop a few pills, as that seems to be causing B to have problems with eating and motivation.  Just 2 pills alone total 24 pills daily!   He takes about 10 different kinds of pills, some singular, some multiple, a couple times a day. ugh.  I have problems just taking 1 pill.    The good news is he gained 3 pounds, so we hope he can hold them.  Blood is still holding and platelets are hanging just over 30, which is his new low threshold.

So now, since the rash is moving out of our neighborhood, we need to rebuild our skin, which has taken a pretty good beating in the process.  B is a peeling mess and feels very grungy, but hey, it was a gnarly rash and we are super happy it is moving on.  The bladder has been doing quite well and we are hoping to come off those meds very soon.  There certainly seems to be hills and valleys in this recovery process.  No sooner do we get to the summit of one hill, we slide down deep into a valley.  All I can say is it has been quite a ride.  B will be happy to regain some of his energy as that seems to be dragging him down.  My recipe is food, sleep and less meds to help get the energy back.  Also it would be nice to find a drink he likes, we have tried so many.  Just today our daughter tried 4 different drinks before he was sorta OK with one.  This is due to his taste buds being so tortured from chemo.  It will come back but until it does, we continue to find the magical elixir for him.  Perseverance is one of my gifts and I have faith we will win this challenge!
Until next time,
Hopeful Believer.