Jeff now takes steroids three ways – eye drops, mouth gel and oral Prednisone. The Prednisone has been tapered twice and he is now taking 60 mg per day. The ability to sleep no matter what – a strength of Jeff’s – is greatly impaired. Four hours of sleep a night for someone used to getting 8+ is not pretty. Add steroid-induced irritability and, well, mild-mannered Jeff sometimes hides. Jeff tried to describe to me what it feels like to be both grumpy and grateful but couldn’t seem to describe it to his satisfaction. I suggested that he increase his Melatonin dosage. Nurse Heather started him at 10 mg when he began Prednisone. Jeff decided to try 15 mg which yielded his first decent night’s sleep in weeks. The next morning he woke up expressing gratitude and joy, not just for a good night’s sleep but for a good and joyful life! How lucky are we?!
Unfortunately, the second night at that dosage was not so successful. Try, try again.
I heard “Dexamethasone” while listening to a Webinar on COVID and blood cancer. Dexamethasone is given to COVID patients in serious condition. Why did I know that drug? I opened the kitchen cabinet where Jeff’s pharmacy is kept and saw that, yes, Dexamethasone is what he swished around his mouth for GVHD of the mouth and throat. Dr. Porter said to swish it as long as possible. Jeff got quite good at communicating with hand signals and grunts during his sustained swishing. The stuff worked very nicely. He is left with only one persistent sore which is now treated with gel mixed with that gritty stuff we used to put in our babies’ mouths for teething. When I couldn’t find it in the baby aisle the pharmacist directed me to the oral hygiene aisle. Evidently, the pain reliever in it makes some babies stop breathing. Geez!
Dr. Porter is pleased that Jeff’s liver counts are better but wishes they were good. Besides sleep issues, other side effects that Dr. Porter attributed to Prednisone include weak voice, dizzy spells, dehydration and nocturia, also “reactive” kidney and CO2 numbers and dropping platelets. Another bone marrow biopsy is scheduled for May 24th after which time we’ll learn whether the steroids can be tapered again. Dr. Porter plans on getting Jeff on Tacrolimus as soon as possible because he can’t stay on high doses of Prednisone for too long.
Whenever I hear “Tacrolimus” I remember asking a nurse at Penn why Jeff’s Tacrolimus was the only IV drug brought in a glass bottle. The answer was, “Because it would eat through a plastic bag.” Naturally, I have mixed feelings about oral Tacrolimus. I still think of it as pretty nasty stuff.
Last month I hosted a writing workshop with BMTInfonet.org as part of their annual symposium. I was touched by the expressive writing done, particularly by two women who described what it was like to live with chronic GVHD of the eyes. One of the writers described her vision exactly as Jeff had, “like looking through water”. When the other writer said she had three eye doctors in four states I became concerned that chronic GVHD of the eyes could become Jeff’s plight. Jeff visited his eye doctor last week and scheduled a follow-up in a month. BMT survival takes a lot of specialists. (Jeff hasn’t complained about this for some time.) What’s one more?
The adventure continues.
