Update 2023-1105

Post Transplant Cha-Cha

Mom continues to make progress, and some days the dance is more like a cha-cha than a boogie as she takes one step forward and another step back.

As she says, “Recovery isn’t a nothing burger.”

She’s been navigating difficulty eating and drinking, stomach cramps, nausea, and a more-than-expected amount of fatigue, which has been determined to likely be autologous Graft versus Host Disease (autoGvHD). It’s a known, but rare, complication of ASCT (autologous stem cell transplant) in which the transplanted stem cells (“graft”) don’t recognize the healthy cells already in the body (“host”) –even though they are her own – and seek to destroy them. I am reassured in knowing that her stem cells are strong and that they are ‘fighters.’ They just need to look around and see that the other cells are, in fact, healthy cells that belong — not cancer. The treatment for autoGvHD is steroids, which are immunosuppressants.

Did you just cock your head to the side and re-read that last statement? That’s the reaction I had when my mom explained it to me, and almost immediately set aside all skepticism to trust in the process and the care team.

When Mike and I were in WA last week, we observed positive changes in the few days we were there. From the first moment, Mom was walking without a walker, which was a surprise for me. In the beginning, she was hunched over due to the abdominal pain and shuffled her way from point to point, but she was moving. A few days later, she was upright, and moving with a shuffle-free mosey. On the first day of our visit, conversations happened in short bursts because talking can be fatiguing, by the end of our visit, conversations were full and lively. Her appetite was steadily increasing, and foods were tasting, in some cases, wonderfully good. (Cancer meds are known for making the things we love taste horribly wrong.) The steroids were doing what they were supposed to do.

One of the risks to taking any immunosuppressants is infection – bacterial, fungal, and viral. And before we left, one infection had been identified which meant adding in antibiotics, antivirals, and antifungals. At last count, I think my mom was taking 30 pills a day to help moderate many things we take for granted, like electrolyte balance and an immune system that can stave off acceptable amounts of fungus in even highly filtered water. The steroid dosage is being tapered, the amount of supplemental potassium has been reduced, but the anti-fungal, -biotic, and -bacterial pills have been added in. The 30 pills from last week are different than the ones this week.

Thank goodness Jackie is a master at tracking the pills and keeping up with the changes that are made.

When we talked yesterday, I could hear the fatigue in my mom’s voice. She was out of the house running an errand with Jackie, but it was taking a lot out of her. Some of those 30 pills a day, like the potassium, help boost her energy. Antibiotics, on the other hand, make her feel wiped out. Maintaining the flexibility of an accomplished dancer, the dance continues. Forward… backward… forward…