Hey everybody -
Tom is doing well. He is becoming more and more stable on his feet every day. We have a physical therapist who comes to our house once per week to teach him helpful methods in walking heel first, taking larger steps (this is all using a cane), doing stretching exercises, walking around the house, etc. He's usually worn out when I get home on those days.
He requests his favorite meals but can't seem to eat much of it. He says it smells so good and looks delicious but after a few bites he can't eat any more. Everything has a funny taste - sort of metallic. He's eating enough to sustain himself though.
He's been very depressed lately. He can't stand it any longer. He is on a mission to discontinue his antibiotics, with the doctor's approval. He wants to remain on the medicine that all stem cell transplant patients take (it's called Cellcept) but wants to do away with the remainder. There are four antibiotics: one antiviral, two antibacterials, and one antifungal. He feels like it's too much and most likely the cause of his ongoing ill health. He's to that desperate point of taking the risk of discontinuing the antibiotics - making him more suceptible to germs - in exchange for feeling good and possibly putting him on a different path to "normalcy". He didn't take his medicine for two days and felt so much better than usual. It has to be hard to take pills knowing how much better he feels without them. It's doesn't make any sense.
This whole situation is like the last piece in a puzzle, that won't seem to fit no matter how we turn it and push it. Are we doing something wrong? We can't see the end result until we find the piece that fits.