Day +16: Signs of Healing

Friday's visit brought encouraging news — and a renewed sense of gratitude for small mercies along the way.

We again met with APRN Michelly who covered my labs from earlier that morning and answered all our questions. Through MyChart, the online patient portal, I can see my lab results as soon as they’re available. Over the past few weeks, I’ve learned what to look for — especially my white blood cell count. If it’s too low, I know I’ll get a Filgrastim shot. They’re not really painful, but a needle in the belly isn’t exactly pleasant. Friday's number was a little higher, but still slightly lower than normal. I was anticipating Michelly to tell me she would be ordering a shot for me, but she was satisfied with the trend. Phew! That was a relief!

With that bit of good news behind us, Michelly moved on to the rest of my lab results — and she seemed genuinely excited. She showed me a line on my chart that tracked my hemoglobin level. The date of my CAR T infusion (Day 0) was 9/17/25. Friday was D+16. All of my previous hemoglobin results were low, but today's was 12.6. Michelly remarked that those results were "unprecedented." She had never seen anyone's hemoglobin levels recover so quickly — a very good sign.

"Did you see the extra appointment we scheduled for you next Tuesday?" she asked.

In fact, I had, and it was one of the questions I intended to ask her about. She reminded me of the pentamidine I was given via IV on Day 0 when I had my infusion of modified T-cells. Pentamidine is often used in patients undergoing CAR T therapy to prevent pneumocystis jirovecii pneumonia (PCP).

"We may need to administer another dose of pentamidine via IV depending on how your labs look Tuesday morning," she said. "If your numbers continue to look as good as they have, we may be able to convert you to the pill form. In that case, we would probably go ahead with IVIG treatment on your visit on Friday. Do you remember what that is?"

I admitted that I didn't. She explained that IVIG stood for intravenous immunoglobulin therapy that provides antibodies to help boost the immune system.

The modified T-cells infused on Day 0 have been expanding in my bone marrow, destroying myeloma cells — and, unfortunately, some healthy plasma cells as well. This has left me susceptible to symptoms like cytokine release syndrome — the side effect that sent me to the hospital on September 24 — or immune effector cell-associated neurotoxicity syndrome (ICANS) that can result in life-threatening cerebral edema. Sometimes these side effects can occur weeks or months following CAR T therapy.

There’s another, less common side effect I’ve mentioned before — Bell’s Palsy. It can occur anytime in the months following CAR T. Unlike in my dad's case, however, it would be temporary — or so the medical professionals tell me. It also occurs infrequently, but the fact that it's medically notable is concerning. I'll cross that bridge if I must.

There are so many reasons for me to feel positive, to trust that I've undergone a treatment that might yield several more cancer-free years for me. It's a little overwhelming to think about the research, testing, trial and error, and finally, achievement of remission for so many with multiple myeloma...to dare to hope that I will be one of them.

None of us knows what lies ahead or when our last day on this earth will be. It shouldn’t take a potentially lethal disease to shake us awake — to remind us how precious life is and how fully it’s meant to be lived. After all, that's why Christ came to earth, so that we might have life, and that we might have it more abundantly.