“Grandpop you need lotion for your face.”
Granddaughter Rosie had noticed the flare of GVHD all over Jeff’s face. The same spots remain always but are alternately quiet or active. It was particularly bumpy and red and Rosie was certain she could offer advice that would help.
“Rosie, if you knew had many lotions and potions I have for my face, you wouldn’t believe it can still look like this,” Jeff lamented.
Steroid creams, moisturizers and dermatological creams cannot tame this beast. Weirdly, Jeff enjoyed a few days of calm on his face after he started swishing his mouth with the new formulation of Dexamethasone the oral specialist prescribed for GVHD of the mouth.
“Whoa!” I said one morning at breakfast. “Why do you think your face looks normal?”
“I was wondering the same thing,” Jeff said.
We joked that maybe changing the treatment for the inside of the mouth somehow helped the outside (his face) as well. “Normal” didn’t last long so our silly theory was debunked. Jeff “swishes and sloshes” his two oral rinses three or four times a day and that seems to manage the GVHD mouth sores. He hasn’t had too many problems with sores down his esophagus so maybe these rinses are working better for him. Jeff alerts me when he is about to “swish and slosh” because he has to keep the stuff in his mouth as long as he can before spitting it out and he will, for the duration, communicate with grunts and hand motions. He has to time the two rinses apart from each other and from meals or snacks. (Getting these magic elixirs refilled required three trips to our pharmacy which was, sadly, short-staffed due to COVID and, therefore, three days behind in filling prescriptions!)
Jeff calls me at work when Dr. Porter enters the exam room at his regular hem-onc visits. Last week Dr. Porter discussed the kidney biopsy (no GVHD there, nor cancer), a COVID booster (get one as soon as you can) and a slow steroid taper (a month at a time, currently at 5 mg). My questions answered, new instructions noted, I left the call. Then Jeff remembered the question that was most on his mind, “When can this PICC line come out? It’s been in there for a year.”
For a year he has had to tend it, covering it in a silicone sleeve to take a shower and flushing it with heparin every day. Dr. Porter said, “Oh!” as if he didn’t realize how long ago the PICC line was inserted. PICC lines often don’t last this long and its longevity may be due to the good care Jeff and our granddaughters give it. When the girls are with Jeff, they fight over who gets to press the syringe for the flush. Fortunately, there are two tubes so at least two of the three girls can have a turn on any given day.
If Jeff’s numbers (blood counts, liver and kidney numbers) remain steady and pretty good, the PICC line can come out in a month, Dr. Porter thinks. Then the Home Infusion nurse would no longer need to come weekly to change the bandage and draw blood. Then Jeff’s blood would be tested monthly. That will be liberating for him!
Jeff seems to be getting stronger although he still needs naps sometimes. Unfortunately, our four-year-old granddaughter, who spends two days a week with Grandpop, seldom needs a nap. The two of them are working it out. Sometimes he wins, sometimes she does.
Our family is undergoing some changes. Our youngest son moved out (again) and we are empty-nesters (again). It suits us. We will miss our Jeopardy whiz/lawn-service/hardware deliveryman/technical consultant/pizza-picker-upper but we will manage.
Another family member entered hospice care – beautifully, gracefully and with the love and support of her family. She and Jeff have commiserated over their cancer experiences and though she is strong, it is difficult to know that her journey will very likely be a painful one. Still, she intends to “go out laughing” and here’s hoping that isn’t for awhile yet and that she gets to have many, many more laughs. Prayers for her, if you will, for all those dealing with the ravages of cancer and cancer treatment, and also for their caregivers.
If you are so inclined, please support our friends, Michael and Monique, in their fundraising effort for the Leukemia and Lymphoma Society, Light the Night: https://pages.lls.org/ltn/epa/BucksCo21/mriottovkk.
