A lot has happened the last month. The CMV infection was resolved, and then 2 weeks later reappeared, so I'm back on the anti-viral medicine. The rash on my face has grown to be a non-fungal "dandruff", which isn't pretty, but manageable. When I complained to SCCA, I was given a link that showed some pictures of some real graft vs. host disease rashes. Suddenly I'm not complaining so much.
Thankfully, the cancer blood test again came out "not detectable" which is very good. That means one less battle to fight, at least for the moment. The other 2 battles are GVHD and infection. Fortunately, the only infection has been the CMV reactivation, and there no sign of real GVHD. And I only have one more week of tapering off of the last anti-rejection drugs. This week I take only 250 mg once per day, instead of 1000 mg twice a day when I started.
I was finally able to take a vacation with the family, 2 nights at Mt. Rainier at the Longmire Lodge. We couldn't go tent camping as usual because I might have trouble with the fungal spores in the dirt. We left Thursday, just in time to be out of reach when they called me back for the anti-viral medicine on Friday. Fortunately, I got the messages when we got back in cell phone range, and picked up the medicine on Saturday and managed to get 2 doses in that day.
A note arrived from my donor, with just a little bit censored for privacy concerns. It seems it was the biology teacher that got the whole class signed up for the marrow donor program. I can't tell a lot about the donor, but he writes well, especially if English is not his first language. A lot of donors actually are from Europe. I'm definitely going to send him a note as I approach the 6 month mark.
Six months! Now that's a cause for celebration!
We're pleased that Gene has decided to play hockey after all. He definitely was not going to play on the team, but help out the goalies at a lower age level instead. We made him at least go to the second and last day of the tryouts to tell the team he wasn't playing, and said he didn't have to go on the ice, but the cheers from his team when he went in the locker room to tell them changed his mind. My hope is to actively work to prevent burn-out this year, something that was difficult to do while we were away on two different transplant procedures last year.
Right now I'm looking forward to spending more time with my family and friends. That has been the most enjoyable part of the summer, as short as it seems to have been.
Revlimid, Darzalex and Dex
5 days ago