The Practice of Hope

Hope, practiced one day at a time.

Day +20 and Day +23

I was hoping to avoid the two-hour drip of Benadryl, Zofran, and Pentamidine, plus the Filgrastim shot today, but here we are. My nurse, LaPortia, expertly accessed my port this morning while John relaxed on the window sill soaking up the Houston sunshine. This is the first time we’ve been in a room with a window…wish we could request one every time.

The infusion went smoothly—not too long—but I was feeling under the weather because of the sore throat I woke up with. During my Fast Track visit at the ATC, Cheryl, the nurse aide, swabbed my nose for the requisite Covid test (negative, thankfully). Still, out of an abundance of caution, APRN Michelly prescribed antibiotics. Aside from low energy and a hacky cough, I don't feel too bad.

One of the highlights of visiting the ATC is becoming acquainted with some of the other patients. One of my favorites, because of his positive outlook, is a young man named Greg Beaver—a resolute survivor. His cancer is a type of lymphoma myelofibrosis (MF), a rare combination of the two cancers. When it occurs, it is a serious complication because fibrous tissue buildup in MF can impair the bone marrow's ability to produce healthy blood cells. The treatments he’s undergone—chemotherapy, bone marrow transplant, radiation, and CAR T—are very similar to mine. His wife, Carrie, often drives with him about an hour into Houston from their home in East Texas for his treatments. He is currently on the same schedule as I am: two visits each week on Tuesdays and Fridays.

Greg always has a smile on his face and always greets John and me with the warmth of a fellow warrior. His inspiration gives me hope for both of us.

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Three days later, we were back in the ATC—new nurse, same routine, same quiet mix of weariness and resolve.

We met a different APRN today—Amelita, who told us to call her “Amy.” Her gregarious nature radiates positivity. John and I have both grown quite weary of this process, and I’m sure she sensed it immediately. She lifted our spirits without even trying. Like APRN Michelly, she was pleased overall with my lab results but decided, since I still have a cough, to order a portable chest X-ray in addition to my scheduled IVIG infusion.

For those who may need a refresher: an IVIG infusion is a treatment in which concentrated antibodies (immunoglobulins) are injected directly into my bloodstream through my port. It’s used to boost my immune system and help prevent immune effector cell-associated neurotoxicity syndrome (ICANS)—a condition that causes inflammation in the brain and neurological symptoms that can range from mild to severe but are usually reversible.

High rises of Houston, including the Doubletree and Intercontinental Hotels and the Latitude Med Center Apartments, reflected in the mirrored facade of the Texas A&M University Health Science Center. Photo by John Kuehlthau.

The downside to this one is it takes three hours beginning with a slow drip, which is increased every 30 minutes. For someone like John, who finds it impossible to sit still for long, it’s torture. If I’m reading, writing, or sleeping, he strolls through the corridors of this vast complex. Today he walked across the long sky walk to the Mays Clinic, then outside along the sidewalk back to the Main Building. He bypassed the elevator banks and opted instead to climb ten flights of stairs back up to the ATC. Suffice it to say, he knows his way around like a tour guide in a museum.

While John was getting his exercise, I was snoozing—but I started snoring so loudly I kept waking myself up with a sudden jerk. That was thanks to the IV of Benadryl I received before the IVIG.

Today's infusion gave me the chills and made me feel achy, like I had a mild flu. Once we were finally finished, all I wanted to do was curl up under a blanket back at the hotel. It probably didn’t help that I’d eaten nothing all day except a few Fig Newton cookies—and even then, I didn’t have much appetite for anything more.

I find as we get closer to our final week here, I feel antsy—a mix of anticipation and apprehension. What will next week's PET scan show? Will the bone marrow biopsy indicate the CAR T therapy was a success? If so, how long might it last this time?

The questions are inevitable, but for some, there are no answers. So I will focus on all that I have to be thankful for: John who has been so steadfast and caring, my two wonderful sons, my family and friends who have prayed for me, my cousins both here in Houston and at home that gave of themselves and offered constant support—especially my dear cousin Billy who, along with Melody, are the biggest fans of my blog. Thank you, Billy, for making sure my cats were well cared for in my absence; you know how much they mean to me. I can't wait to see all of you again soon.

As I think about what next week might bring, I remind myself that hope isn’t a promise—it’s a practice. And for now, that’s enough

God's artwork over Navarre Beach, Florida, October 2025