Wednesday, March 10, 2010

18-Month Cranioversary; Status Report

Eighteen months ago today at this time, I was in surgery and all of you were standing by with healing thoughts and prayers. Our family owes so much to all of you for the support, caring and love that got us through a scary time.

In today’s here and now, things are almost normal, though not quite and still a little “off” in some dimensions--and so much better than we ever imagined. I can work with adaptations for still-limited energy. I’ve learned a whole slew of new compensatory mechanisms for the limitations that remain, and some of those are still slowly receding. Last week, for example, when the elevator was out in the building with the huge open stairway that has been a serious challenge for me, I managed both up and down without falling down and without help. I might have looked a little silly holding onto the railing with both hands on the way down, but if so, the people around were too nice to comment in any obvious way while I was around.

My scalp is mostly better (still a small strange spot) and the major head issue (at least on the outside) is where my skull clicks. The check-for-tumor-recurrence MRI has been scheduled for next month and I’ve got an appointment with the neurosurgeon then to talk about the scan and my skull; at my physical last week, the family practice guy shunted us there. He likened it to the situation with kids’ heads where the plates grow together over time. It seems odd to me that the click would develop this late in the game, but maybe it was there and I just didn’t notice before? The other possibility is that one of the spacers holding the replaced skull section in place has worked its way out of place. We’ll know more after the scan next month. (Note: Michael thinks it’s my scalp that clicks, and he’s usually right about stuff like this, but it sure feels like my skull to me.)

Otherwise, I don’t do my exercises often enough for my shoulder, which is the good news because it’s not an obvious enough problem that I remember all the time. Still, to get full mobility, I should, so I’m trying to build in reminder triggers in daily life, by leaving the exercise bands out in full view so I see and remember to do the exercises.

My balance is still wonky but improving, I think and hope. My stamina is always a challenge, but if you compare now to a year ago, or six months ago, it’s clear that there’s forward progress. I still almost never have the urge or ability to read fiction, though I read a short book last night when I needed some serious escapism, so that was progress, too. Several friends have suggested that a waning interest in fiction is partially a matter of aging (maturing??), and urged me not to chalk this all up to tumor/surgery. It’s such a big hole in my life, it’s hard not to focus on it, and yet I’m mostly managing, given the overall positives. Decoding the comics seems gone for good, which also seems pretty minor in the big picture here. The jury is still out on whether I’ll be able to write an entire book manuscript again, and also whether that’s brain injury or just natural lack of capacity. Time will tell...

There’s a ton to do today and while there’s more detail that would complete the status report, it is going to have to wait for another day. Thank you, from the bottom of my heart, for the friendship, love, advice, cheering section and general goodness all of you have offered through this adventure. I cannot imagine what it would have been without you. I feel incredibly lucky and blessed to know such great people.

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