Nineteen Month Status Report: Taking Stock

Nineteen months ago, I had a craniotomy to remove a baseball-sized tumor from my left parietal lobe. It turned out to be, as predicted and hoped, a benign meningioma. The medical process, starting not quite a week before with diagnosis, has been an interesting journey. Today, as I write, I’m essentially fully recovered from the surgery, though I’m a different person both physically and mentally than I was before.

The physical part of this adventure was relatively straightforward: major surgery is a physical assault from which it takes time to recover. The hospital experience and the convalescence have commonalities across different organ systems, and the creeping nature of returning energy and confidence are not unique to me. The craters on my skull are standard and boring even though they hold such an unhappy fascination for me and are invisible because of all that curly hair. The strange scalp sensations haven’t completely receded, but they are expected to, eventually. Probably, little of what we’ve all gone through is unique from the physical perspective.

The particular symptoms I had, stemming from the size and placement of the tumor produced combinations of known effects, but usually only in hindsight: little enough is truly known about the brain that there was no good way to predict what would happen, only explain it afterward. For example, when the whole process seemed to re-start and send me through menopause all over again, no one predicted that, but the surgeon said, as happily as he said everything else once it became clear that I was functionally intact, “that happens sometimes!” He was similarly cheerful about each of the other side effects as they emerged, and did a lot of smiling and bobbing his head with each successive report: “Yup, that happens sometimes!” The problems I had with use of my shoulder and arm fell within the realm of the explainable, because the tumor pressed on the part of my brain controlling my shoulder. No one knew in advance of the effect it would all have, but it made perfect sense with some thought. The vertigo and balance problems haven’t been specifically explained physiologically except, you guessed it, that happens sometimes.

For a long time, I struggled with the existential question of “who gets a brain tumor anyway?” and the scary part, nicely captured by West Coast, of what it means to get a brain tumor when being able to think crisply and deeply has always been what distinguished me and let me accomplish what I have in my life.

Today, the predominant leftover effect of this experience is the disruption caused by having this experience at a time when I was just becoming comfortable in my own skin. I knew and lived according to a set of values I’d been working on for a long time, finally mostly understood when to trust (and not) my taste and instincts and generally knew how to play to my strengths and compensate for my weaknesses.

In the middle of that, everything changed. Things I’d known about myself, many acquired through uncomfortable introspection and examination, didn’t necessarily hold true any more. Techniques I’d used for self-soothing--like reading and making things with my hands--weren’t possible any more. Certain kinds of mental processes, from making connections to synthesis to word games, vanished or were severely curtailed. My independence and I-can-do-it-my-own-selfness (one of my favorite phrases from parenting and watching babies evolve into self-propelled beings) were compromised beyond recognition.

Emerging from that phase, there’s a lot that still needs thinking about. There are activities for which I still must ask for assistance on a daily basis. I’ve gotten better at that, as well as at accepting the help that is always offered so generously and graciously.

Parts of who I thought I was are probably irrevocably changed: at nineteen months, the power of neuroplasticity or not, there are capacities and interests that are not likely ever to come back. In some ways, it’s a gift, at midlife, to be able to reshape who I am and want to be. There are parts of it, though, that are mostly finding ways to come to terms with loss amidst the incredible gift of almost-total recovery and the many blessings of this experience: a supportive and loving family and friends, a gifted surgeon, a benign tumor that didn’t invade my brain, perfect hair for brain surgery, an intact sense of humor, flexible work that could be adapted to my new reality, and as confirmed this week, no tumor recurrence so far… the list is long.

It seems fitting to mark today as the close of Part Nine, and the opening of Part Ten of this adventure. Part Ten seems to be about my integrating this experience into my me-ness and re-imagining my life going forward. I’m different than I was before, diminished in some ways, more grown-up and enhanced in others. I’m still trying to get a handle on all of that.