A Bit Weary...

We have had a stretch of busy days, and I am ready to relax and catch up on some things the next 3 days. I am a home-body anyway, so this will be enjoyable for me. We traveled to Ann Arbor Monday and Tuesday of this week. Ron had appointments with his transplant doc and also the doc who is the BMT head doc. After Ron had a flare up of his graft versus host disease a month ago, Dr. Mag wanted him to see Dr.Couriel. He felt Ron needs to be checked for lung issues and also another MRI to see if there are any changes in his brain lesions. We will travel to U of M Canton, MI for chest and sinus CT scans on Monday. That will be a day trip. Dr. Couriel believes that he had a flare as a result of starting ECP light treatments only once a month in September, so Ron will resume biweekly trips to Ann Arbor this month.
Another change will be with his preventative anti-fungal medication. He is having this medication in IV infusion, so we have the IV pole out of the closet again. He had his first IV at the clinic on Tuesday, and a visiting nurse came yesterday to watch me give the first at home infusion. This is a daily infusion that takes about an hour. The liquid antifungal aggravates his cognition and coordination issues. He will also receive physical therapy at home for awhile and then perhaps transition to PT back at the facility that we used last winter.
Yes, winter looms, so we have had our flu shots and are hoping for no hospitalizations this winter. Next week we will spend 3 days in Ann Arbor for ECP treatments and the MRI of his head. I am assuming that he will then be able to take less steroids. It is such a balancing act, and less ECP tipped the scale which caused the GVHD flare up. Probably.
It is a relief that gardening is coming to year's end. I have indoor projects planned, and we have already had a killing frost and snow flurries, and I even put on my long underwear today! Ha!
Love to all friends and family as our journey is now a saga!
Ron and Jan