Fragile

Last night I had a tornado dream…the first one in a long, long time. Tornadoes are one of two recurring themes for me. The other involves airplanes, usually trips in them, but as far as I can recall I haven't had one of those in years. Neither is actually scary; rather, they are intense and exhilarating. Most of the time the tornadoes drop out of the sky in multiple numbers, often all around me. Goose bumps make the hair on my arms stand on end, and I watch, enthralled at the power and ferocity of this phenomenon of nature.

As for interpretation, I think growing up in Tornado Alley has a lot to do with it. The tornadoes represent the violence of nature and their destructiveness, but I don’t think that’s what they represent in my dreams. The ethereal nature of them descending one after another and sometimes all at the same time, always in numbers, is more representative of chaos. That would seem to fit the pattern of my life right now when I consider this relapse.

Once again, I am traveling to M.D. Anderson (MDA) to prepare for and undergo the leukapheresis of my white blood cells, or leukocytes, which will then be "trained" to attack the cancer cells in my body. My bone marrow biopsy showed 5-10% of my cells are myeloma, a percentage too high for a stem cell transplant but apparently not for this new treatment, called CAR T-Cell Therapy, and I am thankful for that.

The leukapheresis is identical in procedure to the apheresis I underwent in 2021 to remove stem cells from my blood. It will start on Tuesday morning, 1 July 2025, when I have a central veinous catheter (CVC) implanted in my chest opposite the power port already in

the left side of my chest. They can’t use the power port because the pressure of the machine as it draws out my blood and then pumps it back in is too great and would damage the port. The CVC is both an internal and external device, and it’s not particularly comfortable. The internal part of the device is connected to a vein in my chest or neck. The external part protrudes and hangs from my chest with three lumens or “pigtails.” The infusion nurse will attach IV lines to these pigtails, one going into the special centrifuge machine that will spin and somehow siphon off the leukocytes from my blood and deposit them into a bag, and another going back into my vein carrying what’s left of my blood back into my body. The process can take between 3 and 6 hours to complete.

Tomorrow (Monday), John and I will be traversing the corridors of MDA as well as visiting another building in the vast campus called the Mays Clinic. There I will have a series of chest X-rays, which will be used to “verify” my power port so they can use it for blood draws and less forceful infusions, like chemotherapy, and to evaluate a good spot for the CVC. I will also undergo an electrocardiogram, one of two heart tests my CAR T team recommends providing baselines for comparison as I go through treatment. The other test is an echocardiogram, which I did on 26 June at one of my oncologist’s offices in Pensacola.

I will consult with Dr. Richard Champlin, Professor of Medicine, Department of Stem Cell Transplantation and Cellular Therapy, Division of Cancer Medicine, who will explain more about the leukapheresis and CAR T-cell therapy. On the drive to Houston, I plan to read some material the CAR T nurse gave me and make a list of questions for him to answer.

Next, I will have a follow-up appointment with Dr. Pasvolsky. A phone consultation with a nutritionist will close out the medical portion of my day.

John and I will then retreat to my cousin’s beautiful home in Houston not far from the hospital. We are so fortunate to have family there who have graciously opened their home to us not only for this short visit, but later this summer when I will convalesce following the reinfusion of the modified leukocytes, which can take four weeks or more.

The frenzied pace is set to continue when John and I return from Houston on Wednesday. I am scheduled to see Dr. Joudeh, my oncologist in Pensacola, on Thursday, and my new chemotherapy and radiation routines will begin on Monday following Independence Day.

I haven’t had a chance yet to read about the new chemo regimen. I only know the names of the drugs. They are in triplet, just like the original regimen when I was first diagnosed. This treatment is called KPd and consists of Kyprolis (carfilzomib), via transfusion; Pomalyst (pomalidomide), a pill; and dexamethasone, a corticosteroid that can be injected, infused, or oral. I am not certain in my case which method we will use, but I suspect it will be given along with the Kyprolis.

The chemotherapy infusions will follow a funky schedule that I can’t remember right now, but I will tell you more about it in a future post. I know it’s given two days in a row the first week, and then only once the next week, or maybe it’s twice but on two separate days. Sherry LeRoy, the APRN in Dr. Joudeh’s office, assured me that it would be confusing for only the first week or two, and then I would get a rhythm going with it. No doubt she’s right.

Unlike when I was first diagnosed, I can feel this relapse. My back hurts all the time. The ribs I’ve recently broken have left my compensating muscles protesting with constant aching and sudden spasms that frequently take my breath away. The pain is exhausting. After I learned the results of the PET scan, it was difficult to keep my mind from wondering how fragile my spine might be. Could I break it if I bent or twisted a certain way? Would it snap if I picked up something too heavy? I asked Dr. Pasvolsky, and his response was, “You need to be careful. No lifting more than ten pounds.”

I feel helpless and brittle, and it scares me, especially at night when it’s a struggle to ease myself out of bed to go to the bathroom without passing out from the pain. This is a hugely different ball game for me, and I wish it were not my turn to play again.