“Looks like your body rejected the T-cells”
My oncologist knew this because a few B-cells had come back. The “miraculous” CAR T-cells eat the body’s normal essential B-cells as well as leukemic cells. If B-cells are coming back, that means the educated T-cells are no longer present in my body. Which leaves me open to relapse. It is possible that they did their all the work of destroying leukemic cells and then disappeared. But no one knows.
“And my hunch is we need to assume the cancer could come back.” My typically unsmiling doctor delivered this news in his typical way. Two state of the art treatments and they both failed, I thought. Two treatments where I was surrounded by “the team” of doctors and treatments and nurses. This is not to speak badly about my hard-working oncologist, the one here in Friday Harbor, and the one at SCCA. But plainly speaking, the “team” approach sucks. I feel like a student who flunked out of school. You get the report, delivered by your oncologist, that the Tcells or transplant failed, but the team that was so much a part of your life simply vanishes without a word.
There will be no second transplant (too hard on the bone marrow and body in general). And no second infusion of CAR Tcells (wouldn’t work). More treatments are coming into the realm through immunotherapy. But not until late fall. The SCCA doctor (an ALL specialist) was worried enough to ask me to take ponatinib again.
Um yeah, you probably don’t remember my post about that drug, before CAR Tcells. Ponatinib’s (trade name Iclusig) a “tyrosine kinase inhibitor”. The latest generation of “nibs” that were a breakthrough for Acute Lymphatic Leukemia. Full of side effects so strong that people have died or had lasting major effects. One of them is to suppress the bone marrow. My bone marrow that was so injured that it took months for it to be able to produce platelets and red and white blood cells again. I am just now mostly normal.
So, even though my August BCR-ABL test (tests for presence of leukemia) was negative (deep relieved breath), he still wants me to go on Ponatinib as a prophylactic or preventive medication. Deal with the dangerous side effects or open the door for cancer to come back? I chewed on this for a long time, haunted by the choice. The bottle sat with my supplements as I searched for the courage to take it.
The Turn Around
In fiction, and in song, you need a “turn around”, especially when the story is leading in a difficult direction. I was worried about what I was telling my body. So I talked with my therapist who is a cancer survivor from stage 4-breast cancer. She is also taking a tough drug and will be on it indefinitely. And I was right to be worried about how I talked to my body, she told me. Together, we worked out a strategy to call Ponatinib a “healing medicine” instead of a “dangerous drug”.
She also reminded me about “individuation”; That Jungian concept that distinguishes you from everybody else. My first oncologist always called me “sturdy”, and I did see how I was different from other people in my response to everything from chemo to the transplant. In some ways, I was more fragile. But in many ways, I was stronger. My body has had the benefit of so much Salish Sea oxygen, wilderness, exercise, wild animals and landscapes— and always, the transcendence of trees. I am not sure where or how I learned to look and listen so intently at the beautiful world, but I always have.
I draw great strength from the simplest of things: roadside weeds, the sound of leaves falling, water of any kind. Because they are simple, I always have them in abundance. And I have this powerful family thing, this love and devotion to each other. I see this as a gift from Steve’s side of the marriage, and I am forever grateful for it. Both of us are natural community builders, and are surrounded by friends. We also connect to strangers, and that has been a pure blessing when we needed it. I am appreciative of my ability to connect through the internet, as well and through my imagination to stories of all kinds, so that I have not been as isolated as I should have been. Individuation. The unique me. A wonderful word. This now speaks to me strongly because it liberates me from fearing what happened to “most or everyone”.
The Beauty of Life
Maybe I just want to heal PTSD before cancer knocks at the door again. I just want the hours to watch the granddaughter shout at the CD Player while making dancing movements until I turn it on for her. When she danced, she made hand motions like I do when we are dancing in the kitchen. I want her to remember me. While “Forest Bathing” I stand in awe of trees I have never seen before, though I passed them for years, walking and talking with friends. The quality of light has already shifted to autumn. The tastes of summer are phenomenal. I want more time like that, please. I am already in that place where people think “why did I spend so much time working or worrying?”
You Got to Walk That Lonesome Valley
A friend of mine who recently returned from an Old Timey Song Festival spontaneously sang this as we explored an awesome low tide. She was appreciative of the wisdom in these old songs. “And sometimes, she said, “you DO have to walk that lonesome valley.” This struck me as one of the truest things I ever heard. We all do walk there, in between the extraordinary flashes of beauty and connectedness. I have just been lucky, in this world, to have had so much radiance all around the winding path.