The journey continues!

Thursday’s appointment with Dr. Tuncer has left me with an interesting predicament: how to maintain the body I have. To keep muscle mass without function. Halt degeneration.

I am supposed to be doing core muscle exercises, squats and Lili ordered a Velcro weight strap for my left wrist: I still can raise my left elbow even if the hand just flops.

Reading at the Sprung Formal Magazine Release Party on May 9, I felt a lot of tension in my left arm, as if it were going off in its own direction (though this isn’t in hindsight a visible distraction) so yesterday evening I wore a sling at Marcus Myers’ Informal Back Yard reading. Which eased tension, I think, by removing the arm from play. This sling thing I’m still wondering about for September 16:

But the brain scans show no difference since April. Certainly no progression, or growth. I asked why am I on Temodar if there has not been a tumor recurrence and Dr. Tuncer replied that tumors have tentacles that don’t show up on MRIs, implying that one of these invisible threads must have impacted the motor strip, as far away as it is from the tumor …. And Temodar “is killing” tumor cells. Not just interfering with their signals and ability to reproduce.

Eventually only Temodar-resistant cells will remain and populate.

Dr. Tuncer also lifted the two-year limit for this current regimen of Temodar, explaining that we’d play it by ear. Keep an eye on the blood counts. People have gone off chemo, taken “vacations” that allow bone marrow to bounce back, then restarted, but there’s no data to guide our decisions beyond a year back on Temodar.

When I asked about treatment fields–which I was surprised to hear him say “work” at our last appointment–because he hadn’t mentioned them in our discussion of future treatment options Thursday last, Dr. Tuncer went to grab his mannequin head bust. Which turned out to be missing.

I remembered him saying it would have to be either Optune (treatment fields) or Temodar, but he denied that and said they’re almost always used together, and would I like him to put me in touch with the Optune rep?

I said I don’t see why I wouldn’t say yes. You have to shave your head, I’m already bald. Biggest side effect is skin irritation, a piddly thing in the face of death. So here’s what I’m looking at:

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