Belated 14-Month Status Report

Another encouraging sign of progress is that the 14-month cranioversary slid right by us last week on the 10th.

Imagine for a moment that if, at the beginning of this process, the surgeon had warned that brain surgery has inevitable side effects, and then provided a menu to order from, requiring us to sign up for a stipulated minimum number. At 14 months out, the remaining symptoms are, every single one, in the category one would choose over all other options. As Don Bitzer would say, these are the good problems to have, and most of the time, I remember that. I’m not dead, paralyzed, visibly brain-damaged, my personality is intact and I’m not disabled to the point I cannot work or enjoy life. It’s all good.

The specific current inventory:

Scalp: “the last thing to heal” (neurosurgeon, pre-surgery) still has a small area that is both numb and hypersensitive. That area is probably the center of the peeled area.

Skull: probably completely healed. Full of new contours, including several pretty deep ravines. Completely invisible except to touch.

Right shoulder/neck/arm: almost-total range of movement, though still quite weak. Shoulder still does odd detours when arm is raised or lowered and joint still clicks pretty regularly. Continuing physical therapy to strengthen and increase control. Fingers go numb with certain movements.

Balance problems/vertigo: triggered when tired, in new places, from visual overload. Otherwise, pretty steady on my feet most of the time. Recently discovered in strength training that I cannot balance when my feet are in-line with each other. To try this, put one foot directly in front of the other, touching heel to toe. I cannot maintain balance when my feet are touching, or when there is distance between them. We’re practicing this.

Fatigue: some hysteresis is returning, so most of the time, fatigue is signaled and sets in gradually. Still occasionally just hit the “done” spot and must lie down immediately, but happens much less frequently than before; one of the biggest improvements in the quality of every day life. Still get overloaded by novel experiences, still do catch-up sleep after big exertion. Friday’s presentation in Chicago (and travel back and forth) led to extra sleep Friday night and a three-hour nap on Saturday. It’s frustrating not to have the energy to do whatever I want to do, and since that’s not a choice I get to make any more, I’m learning to live with this more gracefully. It just is, so…

Adrenal system: we hope this is coming back on line. The last morning cortisol measurement was very encouraging (17, when a “good” range is 18-20 at minimum, higher being still more desirable). Steroid tapering a rocky process with multiple side effects from either the adrenal stuff or the steroids, or both. The reprise of menopause, complete with hot flashes and insomnia is particularly tedious. Those and other symptoms wax and wane and they’re bearable. It will be good when they finally recede. They will, won’t they?

Cognitive functions: improving! Clarity of thinking feels sharper and less muddy more of the time. It’s wonderful. The interest/ability to read fiction still comes and goes. Right now, it’s “off.” Still cannot decode the comics. I can understand the pictures and read the words, but cannot collide them to make sense of the meaning. This is most peculiar.

So: overall, the tumor is gone, at last brain scan there was no sign of recurrence and recovery continues. Tally ho.