The calendar says Spring arrived yesterday. The bulbs and flowering shrubs and trees say Spring arrived weeks ago, about a month ahead of schedule.
Meanwhile, inside, we're having a taste of winter. I'm having another round of swirling joe-flakes, as my latest bout of skin rash has progressed to the peeling/shedding/molting phase. The rash was worse, so the peeling is worse. My doctor has described the GVHD skin rash as similar to having a chemical burn, and it feels like I think that would feel this time.
It's especially bad on the palms of my hands. There's an entire layer of dead skin to get rid of, as if I had dipped my palm into molten wax, except I can't just peel it off. It can only come off when it's ready, or, more importantly, when the skin underneath it is ready, to avoid infection. My hands feel sunburnt.
The palm peeling process takes days. First fissures form at the lines that a palm reader would read. Then the skin turns yellow at the edges of the fissures and starts to peel away from the new skin underneath. It's tempting to pick at the jagged edges, even though I shouldn't, and I'm not good about resisting the temptation. After two days, my palms are about one fifth peeled.
I got a prescription for a stronger topical steroid yesterday. It is a creme that comes in minuscule tubes clearly intended for a small, localized rash and not a rash covering 60% of the patient's body. It takes a long time to apply the creme, several times a day.
Tomorrow I have a bunch of appointments in Chicago: dermatology and oncology to look at my rash, a pulmonary function test, and the famous 100-day bone marrow biopsy. After the first transplant, it was the 100-day biopsy that brought the first indication that all was not rosy, which started me down a rocky road to the second transplant. There is reason to hope for better news this time, in particular because of the GVHD that's tormenting me after this second transplant.
I have mixed feelings about the summerlike weather we have been having: sunny, highs in the 80s, evening temperatures in the 60s or even low 70s. The warmth and sunlight and early flowers lift my spirits, and my spirits can use the lift. The downside is that I want to but cannot get out into the yard to mulch and weed and prepare planting beds. Yardwork is prohibited — too many malicious molds out there.
I do get out for nightly walks with Jan, which are uncharacteristically sultry and floral for mid-March. On balance, the summer weather is a good thing.
Hoping for good news from your appt tomorrow and the test results that will follow!
ReplyDeleteA Joe-man in summer-ish weather -- who'da thought?
Off to prove I'm not a robot ...
Can't . . . keep . . . from picking. Even if it's life or death? Oh, that's hard, Joe, but you'll do the right thing.
ReplyDeleteEnjoy this freaky spring/summer while we all can. It kind of scares me for what's to come, but carpe diem for now.
Hey Joe, I hope all your test results are splendid and the various docs can find some better treatment options for your nasty skin. Should we be very gentle with you because you're getting so thin-skinned???
ReplyDeletePeace,
Peter
I recall you had the coolest mani pedi ever at one point. So is this your full body chemical peel?
ReplyDeleteHi Joe - I don't have anything funny or clever to add, but I did want to say that I hope things keep improving and that your skin peeling days are over soon. I can't even imagine how unpleasant this rash and its aftermath have been, but at least it has positive over tones. I hope your appointments in Chicago went well!
ReplyDeleteFor your sake, and mine, I just have to believe that this GVH reaction is going to be worth the high price of pain and discomfort that you're feeling.
ReplyDeleteI know you'd rather be doing it yourself, but Lauren and I can certainly help with some yard work when we visit for the marathon (especially since I'm going to the marathon weekend to not run anything!)