Jeff cleaned off the nozzle of the spray paint can I’d managed to clog. He handed it back to me and said, “I can fix anything.”
“Except yourself,” I teased.
“I’m working on it!”
When Jeff visits a specialist for the first time the new doc is likely to comment on Jeff’s willingness to do what it takes to be well. His medical record is marked “Compliant”. We can’t imagine saying “no, thank you” to efforts to improve health although Nurse Heather says that happens a lot.
The report from a recent skin biopsy gave welcome news - not cancer - but left questions. Jeff’s case was reviewed by the Dermatopathology Consensus Conference which sounds mighty important for a group who could only narrow it down to about three unpronounceable possible diagnoses. There was a referral to an Oral Specialist (a totally different part of the anatomy but somehow, weirdly related). Jeff scheduled an appointment in November - the best they could do, he was told. Dr. Porter’s office intervened and voila! Jeff got the message, “Come next week.”
In a flood. Jeff’s symptoms are concerning and it seemed important to keep the appointment. We texted Daughter Kim and asked for suggestions for an alternative route since major roads, including the Vine Street Expressway, were closed due to flooding. The ride was round-about but Jeff got there in reasonable time, an hour and a half.
After a couple of young docs interviewed and examined Jeff, Dr. Stoopler arrived in the exam room. One look inside the mouth and Dr. Stoopler confirmed GVHD. We suspected this because all the symptoms on the head (skin, eyes, mouth, throat) had been getting worse as the steroid taper continued.
“Do you have trouble swallowing?” Dr. Stoopler asked.
So far, the lesions and swelling have not impacted Jeff’s ability to eat enough although he sometimes has to take it slowly. He thought he was imagining feeling obstructions in his esophagus but Dr. Stoopler believes he has sores all the way down and referred him to an ENT specialist at Penn.
Dr. Stoopler’s diagnoses included “stomatitis” and “mucositis”, thus increasing our vocabulary once again. He said GVHD of the mouth is hard to maintain and prescribed a different formulation of the Dexamethasone mouthwash and added an anti-fungal mouthwash. He gave Jeff a list of foods to avoid including cinnamon, garlic, vanilla and mint (including mint toothpaste), as well as the more obvious ones – tomato sauce, citrus, red wine. For fun, Jeff added broccoli and brussels sprouts (he likes both of those).
Upcoming visits include follow-ups with dermatology, the oral specialist, hematology/oncology, ophthalmologist (tear ducts were plugged), oral surgeon (check on skin graft). Also, dentist, a physical with his primary, initial visit with the ENT specialist and weekly visits with the home nurse. This is part of what it takes and, as we know, Jeff is compliant! He calls himself a “professional patient”.
This summer has been an odd one: COVID scares, tornadoes, hardly any days at Judy and Mark’s pool, maintaining vigilance to minimize COVID risks, and spending an inordinate amount of time just the two of us. We are happy we see our children and grandchildren regularly. They add color to our social calendar, for sure!
Good news:
- Liver and kidney numbers are fairly good and fairly stable despite
a bout of acute kidney failure a couple of weeks ago.
- The steroid taper is down to 2.5mg and, unless instructed
otherwise, will be zero by Thursday.
- We completed our goal of walking the entire Delaware Canal Towpath. Last weekend we walked a couple of miles on the Delaware and Raritan Canal on the New Jersey side of the river. We might set a new goal to hike the NJ side. Stay tuned.
- Almost all of the things damaged or lost in a power surge on July 1st (including central vac, garage door opener, hot tub, dehumidifier, lights, routers, TV…) have been replaced or ordered.
- Jeff started a project at Friend Dan and Jennifer’s house
which is challenging for him but he is determined to do the work. We are thankful for Dan and Jennifer’s
patience and willingness to help the contractor haul heavy things.
We hope you are all well and happy! Take care of yourselves and be thankful for something every day.
