guest post by Johanna.
I'm gonna call this day 2 of Steve feeling miserable. You all know he holds up pretty well but I know he's suffering when he uses the word "miserable". His throat hurts and the mucositis was bothering him so much last night that he coughed until he threw up. Then he was so sad that the food he worked so painfully hard to eat was lost. This also caused the small hemorrhage in his eyes to worsen so you can't see any more white (Steve's evil eyes). Though this can look scary it's harmless, doesn't affect his vision and should go away in a couple weeks.
The following pictures are linked for your viewing comfort- not for the faint of heart!
EVIL EYE LINK 1
EVIL EYE LINK 2
Steve's doctors rounded this morning and continued the discussion of his rash, which they are now starting to believe may really be graft vs host (GVHD). After some discussion they started him on a steroid for the rash and came to take a skin biopsy to see if they can identify it as GHVD.
Steve just relayed the skin biopsy story to me and it goes like this:
"They came in and I was lying in bed sleeping and they tried to find the most concentrated area of rash. They cleaned off my whole arm and drew a circle the size of a pencil eraser and numbed it with lidocaine. Then the took out this tool, and said I'd feel some pressure, which I did, and they kept pushing and took out this core sample of the skin on my arm. And I looked over and there was a little hole in my arm filled with blood." Now I'm laughing at this story, which is sick, but he insisted I tell the full version and that cracks me up. Steve wants me to add that he'll probably have more skin biopsies in the future.
To take care of his mouth pain they gave him a fentanyl pump that he can press to help with his mouth/throat pain. At first Steve wasn't sure if it was helping but then he realized he could swallow without pain. Also the steroids give Steve the munchies which helps him want to eat- so being able to swallow a milkshake (or 3!) is really nice. Steve asks "Is it wrong to be on narcotics?" I think this is something we can let everyone comment on.
Later on they told Steve about a phase 3 clinical trial for Prochymal that Steve could participate in and sent a nurse by to talk with us about it.
After adjusting to his pain pump and having the steroids kick in, Steve's mood improved considerably. Cindy, Brian and Bev visited and we watched Baby Mama on the tv in his room.
two extra carriage returns just for Steve's viewing pleasure!