Update. 8-30-26
I just wanted to thank again all the very generous and thoughtful donors who have contributed over the week. I had heard about other patients who gasp aloud, awed by the responses to their fundraisers. Our tears spill quickly seeing the figures. I’m sharing with family, friends, and strangers these following intimate thoughts, because: you make our days, and keep our moments, invigorating. And we thank you deeply:
The GFM fundraiser was launched Sunday 8-23-26.
The month-long-awaited zoom with the Mayo Clinic oncology was Thursday. The doctor, Tony, and I had discussed what alternative drug would now replace the 400mg daily dosage of imatinib aka Gleevec. Last June I had a meeting for two hours discussing the 10 pages of side effects. By the 8th page, all of them sounded so horrific that I exclaimed, “You could’ve LED with this page!” I had not been sold on the drug nor any of the substitutions also ending in –inib. On Thursday I still was not thoroughly sold on the lowered dosage of the same drug. However, these are the areas that keep us hesitant patients in a quandary: insurance had already approved the drug, and another would mean the local pharmacy would need another authorization and revised prescription of 100mg. And then there’s the wait. I already had been without any substitute drug for 36 days after having tried the same drug at the higher dosage for 39 days. Over that time, six side effects had appeared within a week, then a few days, to accumulate In my body every day for the remaining time. The worst was—beginning with weepy, sticky eyes—full closure of my left eye with my swollen left side of my face. On July 24 I had sent doctors consecutive jpgs of my face with my alarming texts about what to do. Finally, both oncologists, local and at the Mayo, sent me emails minutes apart that I should probably “go to E.R.” Within the 7 hours I was there, I had an emergency MRI of my head area: I was diagnosed with preorbital edema and was told to stop the drug. I’m still waiting for the signed prescription and lowered drug shipment.
That same Thursday afternoon, Tony returned from his overdue dermatology visit. Some scabs and flaking skin were on his temple forehead area for years. The largest half-inch circular depression was diagnosed as cancer, a squamous sarcoma. It was biopsied; a future visit may, or may not, include deeper biopsies and/or a procedure called MOHS, reputed to catch all possible “roots” spreading not only into but also around the circle and not leave scars. So we are both in a waiting period, one of so many since February.
These constant upheavals of whatever phase we had moved into—at least three, each changing the treatment plan and causing worry and anxiety, at times affecting sleep, appetite, moods, crying jags. I can admit this after so many weeks and months of that kind of routine. Comparatively, Tony’s cancer is smaller, considered common, and more easily ending in remission. Mine is so completely opposite, termed among the largest sizes, malignant, rare, and incurable. Even writing that description now seems calm, candid, and not anything that feels like. . .me. But I face facts; it is, and I am, those adjectives.
We babysat recently for E--, GoFundMe promoters S-- and D--’s child; her sister, C-- was in school. S-- had a zoom meeting, at the house. Tony and I would keep E-- occupied. That went well, though at times, her clear, high voice, nearing a baby-panic, would question: “Mommy?” She would then hold my forefinger and lead me to the front door yet would only lean out, call softly, search, but not exit the house. I said I was hungry and asked for cereal. She quickly forgot her fear and led me to the kitchen and pointed to a cereal box. I filled a bowl with berries. This happened about four times, each ending with distracting her or starting a repetitive game or having her entranced by “Hilda”, an animated TV character, resourceful with solutions.
I wish I could be so distracted to forget my own fears. I wish I could linger on the very lucky moments when a donation increases the fundraiser. I wish I stopped thinking that I may be disappointing family and friends by having no avenue of my own to decrease the tumor inside me, so I could have an earlier, drug-less, less expensive journey to the inevitable invasive surgery. These are some of my daily thoughts. I want to feel more positive; I want to wake to my usual two cups of tea and cup of cereal and sit outside and watch geckos and listen to birds—a simpler life, less strewn with calculations of another revision in the budget, less hesitation deciding on a local hospital instead of air travel to get the same procedure elsewhere, because of The Budget. I wish we both would not be focused on our respective cancers. Somehow this doesn’t seem fair; but we are not the only ones. Each day we hear of another friend, or friend of a friend, afflicted with cancer; I still feel no specialty having the rarest type of all the ones we continue to hear about. We all identify.
I just want to thank you all again. I will aim more to live with joy and appreciation. You have supported us in so many different ways: 2 SF October benefits, one with music, the other, readings of my plays; October 9, a Brooklyn, NY reading; a local interview for Wednesday’s online news; and tbd, possible SF South Bay and a Hilo event. Watch for details here.
I believe helping us, helps you, too, recognizing your own simple moments of gratitude for good neighbors, cohorts, comfort, successes, and especially, for health. Bless you all.