Saturday, May 9, 2009

Light Shining; The End of the Tunnel? Eight Month Status Report

My brother Glen worked for decades with a top-notch endocrinologist with whom he put us in contact, and who who has been advising us as a favor to Glen. In a telephone conversation this week, we learned more about the interactions of brain surgery, cortisol, prednisone and the adrenal system. In response to his questions, it became clear that both my energy and clarity have turned a corner since starting the low-dose prednisone every morning almost two weeks ago. In short, people with low cortisol levels usually feel sluggish and have low energy; that would sum up where I’ve been for months--and also explain why things have been so much better recently, despite the stress of too much travel and the usual, nutso end-of-semester workload. Prednisone is a synthetic steroid being used to supplement my self-produced cortisol, and the low dose I’ve been taking helps my system think it’s getting what it needs.

Cortisol is produced in the adrenal glands when signaled by the hypothalamus and pituitary. My levels were lower at their highest point than the minimum expected normally. A recent ACTH stimulation test has shown that my adrenals produce more cortisol when stimulated, so we know this is not a primary adrenal failure (very good news), but instead a secondary or tertiary one. The plan is to stop the prednisone after a month and see if my body’s pituitary to adrenal signaling has bounced back enough to keep me supplied. Thank goodness for the doctor willing to take the time to explore a variety of options and formulate the hypothesis leading to this chemistry experiment with my brain. Unfortunately, cortisol has nothing to do with the memory holes I’ve been experiencing; the endocrinologist told us that if cortisol helped short-term memory, he’d be taking it himself. (Who wouldn't be?)

One of the great things about this fine and generous gentleman is that in addition to his expertise in endocrinology, he’s also experienced with the interactions of brain surgery with these systems. While I might have heard all this information before from the neurosurgeon (or maybe not), this was the first time it really sank in. In short, the cognitive deficits I’ve been experiencing are standard effects of brain surgery, both from prolonged exposure to air and the general trauma to the brain. While it’s not common, it’s also not unheard of for a surgical site even as far away as mine from the pituitary gland to affect its functioning, in addition to the general addling effects I’ve demonstrated with such determination. He also explained more clearly--or perhaps we’re just at a place in the process where it was more meaningful to us and thus we absorbed it better--that a year is a fairly standard period of time for these cognitive symptoms to improve. Apparently, around the year mark, even people who haven’t shown much, if any, recovery in cognitive function sometimes make a marked gain. As I’ve clearly been improving all along, though much too slowly for my taste (I can hear you thinking thoughts about my impatience), the prospect of continuing improvement in the near future is heartening. The surgeon had told us “a year to eighteen months,” but I don’t think we ever fully understood how or what that meant.

Tomorrow marks eight months since my surgery, and really, in the big picture, things are going very well. This recent improvement to us marks another corner turned, so much so that we’ve decided that we’ve moved on a phase, and are today inaugurating Part Eight of the adventure. We’re calling it “Light at the End of the Tunnel?”

In the big picture, my children have a mother, and I’m mostly who I was, most of the time. Regaining energy on the scale of the last week or so is a vast improvement--hard to overstate--and one for which I am incredibly thankful. My recurring balance problems, cognitive deficits, scalp sensitivity and limitations in my shoulder/arm mobility are all small potatoes seen in this light. There are effective compensatory mechanisms for all that need them. (I just don’t brush that part of my hair with much vigor, for example. Big deal. Or try to put my arm behind my back.)

Over the past few weeks, even the problems with field-of-vision complexities have abated. I still have odd responses to turning my head, especially to the left, while moving, and have even stranger, usually unpredictable, responses to movement in my peripheral field while I’m also in motion. That combination is the most likely to lead to severe balance problems, up to and including falling down. On the other hand, now that I’ve become more aware of the triggers, I can both limit the circumstances in which they occur and manage them better when they do. I’m quite a spectacle in some of the balance exercises we do in our weight training, though. It’s a good thing the people at the gym are both kind and understanding. The trainer we’re working with is particularly observant and thoughtful in designing exercises that keep pushing the boundaries of my abilities, so there’s one more blessing for which to be thankful.

Have I achieved my goal of meeting this adventure with patience and grace? Yes and no. The marks for grace are much higher than the ones for patience, and neither of them are really in the top rank. However, overall, I’m grading them as acceptable and focusing on the part where more growth seems possible.

This adventure has been a remarkable one, the more so for all the friendship, love and support we’ve received from so many of you. Our tighter connections to the people we love have been a special bonus. We send you our profound gratitude,caring and love.

1 comment:

  1. Can't resist a waggish moment: "As I’ve clearly been improving all along, though much too slowly for my taste (I can hear you thinking thoughts about my impatience), the prospect of continuing improvement in the near future is heartening."

    Wow--becoming a mind reader (with at least a 6 mile range) seems a pretty good brain tumor side-effect. :-D

    Much affection, sister-in-arms.