Sunday post pt.2

We went to the BMT clinic (bone marrow transplant) last week. We sort of enjoy going these days since the visits are now three months apart. It's nice to see the staff - the receptionists, the nurses, doctors, coordinators, pharmacists, etc. It's a bit disturbing though to sit in the waiting room among patients who have no clue what they are in for down the road - what a hellacious journey awaits them. These patients (not all, obviously) sit quietly, with looks of concern, some with little skin color or hair, wondering what phase the others are in and their prognoses. I wonder what they are thinking when Tom enters the door with his frazzled hair and his cane, walking like a drunken sailor and addressing the receptionists with a big familiar greeting as if they were old friends. 'Wow, this man must having been coming here for a looooong time. Man, what happened to this guys legs! Is that chemo-related?'

The BMT doctor told us that the biopsy that was recently done showed no signs of cancer cells! He asked Tom to get an MRI done and visit the neurologist though. He wants to see the status of the white lesions in Tom's brain (April 25th blog post), and to make sure nothing has changed. Although he gave Tom clearance to return to work at the end of August, he told him that he would need clearance from the neurologist (appt with him on 7/24). He will have to make regular visits to the neurologist to address his ongoing nerve damage and periods of numbness.

His memory and concentration are back to normal. The only ongoing problem remains a physical one - chronic peripheral neuropathy which affects his ability to walk a strait line. He can walk straight forward but he teeters from side-to-side, and can lose his balance if he doesn't literally watch where he's going. He has to be very deliberate. He fell in the parking lot on a recent trip to the grocery store and fortunately there were two people close by who helped him up. Although we remain frustrated by the nerve damage to his legs, we are becoming more curious than anything: What exactly caused this? Was it a drug overdose? Was it caused by a lack of communication? An oversight? Is it "normal"? Will it go away? When?!!!

Tom, has extended his medical leave of absense from his job for a few more weeks (as always, grateful to IHG). He's waiting until he has finished his physical therapy, and for his body to get used to the decrease in the amount of steroids - he has just finished a taper and is now taking 20 mg of steroids (prednisone) every other day, indefinitely. The doctor said he could take 10 mg daily but his adrenal glands would get used to not having to do anything which could cause trouble in the long run.

I think that Tom's returning to work will be more of an adjustment for his colleagues than for Tom. I think they will be uncomfortable seeing Tom get around. Tom has trouble walking but I think he will perform his tasks just fine. It's just going to take some adjusting for everyone.

All we can do is stay positive, celebrate every day that we wake up side-by-side, and not give in to this lurking demon.