Seven-Month Status Report

As we hoped, the six-month mark has proven to be a major turning point in this adventure. I’ve had more energy, fewer symptoms, and a better quality of life since the six-month mark than before it. The symptoms that remain all have livable workarounds, so long as I remember to take precautions and pace myself. Of course, we are still learning what proper pacing is, but we’re getting better at it and have fewer collapses or total breaks in activity. Overall, I can do most of what I want/need to do, as long as it’s planned, includes breaks, and as much as possible happens from home where I don’t get overstimulated, or whatever it is that causes the array of reactive symptoms. Michael pointed out today that the wildflowers we planted just before the meningioma/brain tumor was diagnosed are all coming up in our front yard--it’s a nice metaphor for my own re-emergence into a fuller life. Plus, the front yard (very shady these days) will look better than it has in years (we hope) with appropriate woodland plantings.

Here’s a status report from the top down:

-- the incision is almost completely healed: it’s difficult to find over most of its length. The same patch that has been a problem since the beginning is the only place that still has any strangeness. Yesterday, a new bump appeared on my head, which if it were larger we would have called a goose egg; it’s small enough that it’s more like an easter egg. Maybe it’s season-specific? It’s quite sore and Michael keeps quizzing me about whether I’ve banged my head on something. All I can say is: not that I remember.

-- scalp: the sensations in the area of the scalp that was peeled back and then re-attached, said to be the last symptoms that go away, are dramatically reduced both in size and sensitivity. The area that is "not right" is considerably smaller than the palm of my hand and not nearly as odd as it was at first. Areas that used to be weird are now fine, and the sensation of touching them is just like touching any other un-operated-upon spot. The remaining area doesn’t hurt, exactly, it’s just a strange combination of hypersensitive and numb. As I discovered last week, airplane seats hit that area precisely in the sorest spot. Exercises that involve lying with my head on the ground aren’t possible unless I can turn my head to the right to rest on another part of the scalp; the nerve endings (or whatever) are just too unhappy to experience direct pressure.

-- dents: I have a number of dents in my skull. One evening after the memorial service for my dad, some of the family were feeling the biggest and one expostulated “that’s not a dent, it’s more like a ravine!” Dent or ravine, whatever word you use, my skull these days has significant topological variation.

-- brain reoccupation of the tumor void: we have copies of the most recent MRI and Michael will try to read them and extract one we can post. The news on this front was very good--95% reoccupation, which is better than we’d been led to believe would occur. Evidently, the news here is all good. We celebrate!

-- right shoulder and arm: More than at any point since they stopped working at 3 a.m. the night after the surgery, these are back in service. There is still a discrepancy between the range of motion on the left and right sides, but I can reliably write on a blackboard and erase it, shift the gears in the car, lift light weights and control them in my right hand, etc. If you’re not watching too closely, it’s a very good imitation of complete use of the arm. Sheila, the wonderful Occupational Therapist, believes that the symptoms we see are more indicative of central nervous system issues than muscular/skeletal ones: some signals in my brain are still not reaching the intended destinations properly. My shoulder still takes odd “detours” in certain motions, the range of motion is limited, and when I get fatigued, my arm pretty much stops working.

-- still completely medication free! (This may change, see below.)

-- other extremities: no symptoms! No tingling, no loss of feeling, etc.

-- overall energy: mixed. What I believe to be visual overstimulation still does odd things, and strange mixtures of places and people trigger the effect. We don’t know for sure that it’s visual overstimulation that does it, that’s just my best effort to pin it down. I still take more naps than ever remembered in my previous life, but so long as I draw out the length of the day, almost everything that needs to get done can get done.

-- cognitive deficits: many remain, though relatively small in the overall scheme. It’s hard sometimes to figure out what are ordinary aging and what are brain tumor/surgery effects. Now and then, there’s a gap that’s pretty clearly (at least to me) brain surgery caused: writing a different word than I’m saying, losing track of conversations, etc. I still cannot follow a sustained written narrative, so reading for pleasure continues to be completely absent from my life. This is a loss and pretty clearly tumor/surgery-related. Since I have had sporadic events where this ability returns, we remain hopeful that it will come back eventually. I’m agnostic as to the cause of how often I lose things nowadays, and what causes not being able to come up with words: those could be either. On Friday, we got email from the new doctor. He has ordered another round of tests based on anomalous blood results. Apparently, my cortisol levels are very low, which could be related to the course of steroids and my pituitary and/or hypothalamus not restarting after the course of steroids. I’m scheduled for a stimulation test to move this diagnosis along. According to him and consulting endocrinologists, that could explain some of the mysterious symptoms still seen.

--balance: mostly restored. I can walk stairs without a second thought these days (that’s a gift) and rarely if ever actually fall down when experiencing the vertigo from the overstimulation.

--miscellaneous stuff: the hormone surges continue, but are reduced from their very unpleasant peak. This, of course, may be related to the cortisol issue. Or not. Headaches now fall into the miscellaneous category (yeah!) though they’re at a higher incidence and severity level than one or two months ago: that may be due to stress and my very poor management of April’s schedule.

What does it mean to have had a big brain tumor? I have no clue. I had a medical problem, there was a way to deal with it, we chose it, it happened, and now we’re dealing with the aftereffects. I don’t feel like a brain tumor survivor: it’s true that I had a large (though benign) brain tumor and five hours of open brain surgery to remove it. On the other hand, there’s nothing about the tumor or the surgery that defines who I am or how I think about myself. I have a better body awareness than I’ve ever had and, still, I don’t really trust my sensations or my ability to interpret them reasonably. My first response is to ignore the signals and to minimize them; guess this explains why the tumor got so big before being diagnosed. Even having learned this lesson over and over, I still don’t trust my perceptions and believe that working through sensations is the way to go. It would be good if I could manage to reconcile my instincts and my sensations. That’s going to take more work.

This got long, longer than probably is worth reading. Overall summary: we have been so incredibly lucky, and in so many ways. In access to quality medical care close to home, in diagnosis, in having a benign tumor that was fully removable, in recovery, in the state of medical science, you name it, lucky. Most of all, though, we know an extraordinary and wonderful group of people who have supported and carried us through every single step of this very odd adventure. We are lucky to know you. Thanks.