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Sunday, April 17, 2011

Quixotic Update

Quick update - My regularly scheduled appointment with the endocrinologist (who is quarterbacking my hormone replacement therapies) went very well. It turns out my suspicion about low potassium levels last December was correct. I have been taking a supplement since then (which has partially helped my right arm collapse issue) but my level still measured at the very bottom of the "normal" range. He gave me the green light to double my dose to get the level in my blood to rise some more.

My thyroid level is still too low, so he made a slight adjustment on that medication too. He said I won't notice any change for a month, and we'll re-test everything in two months. Endocrinology is tricky. In my estimation, good endocrinologists are not cowboys but rather people who tinker and stand back for a while. It takes lots of patience, from both the doctor and the person being treated. Hurry up and wait.

I have been patient throughout this long process, doing exactly what the doctors have ordered, and -- all in all -- things are working. At times it was downright scary or even hopeless, but I never wavered from what I was instructed to do in terms of convalescing, healing and returning to a normal life. In my own life I do have the ability to put myself in the hands of others at key times, and I don't think everyone has this in them. Find someone with more knowledge and experience, then LISTEN and TRUST and FOLLOW. A lot of people don't know when it is the right time to do this.

The other short update relates to my brain shocks (the painful electrical detonations inside my head which may or may not be related to Epilepsy). At their worst, about a year ago now, I was having as many as 20 or 30 a day. Several months ago they completely vanished or were so reduced in their intensity I didn't even notice them. Well ... recently they have returned. For the past month I had one shock every week or so.

Yesterday I had five.

In the space of three hours, I counted five medium to very large shocks. The first one was like a wave, three or four big ripples that felt like the left half of my brain was melting. (I imagined an alien ray gun pointed at my head; that's the image I got.) The next few were all about the same: sudden bursts of searing pain behind my left eye, about as far back as where my left ear is. They are so nasty partly because they disappear as quickly as they show up. It feels like you are being sucker-punched. Zap!

Two things come to mind right away: I was tired. I did not get the nap I really wanted. Also, this week has included perhaps the heaviest performing schedule yet since the surgery. I was playing principal all week on big, heavy reeds. With the spring weather helping my sound I was playing great, but in doing so I was using more air pressure.

In the past I have been wary of pushing it this much. This is mostly because I'm afraid of the hole in my head springing a spinal cord fluid leak. I wonder about this from time to time: How many professional oboists have had my kind of brain surgery (twice) and then gone back to the stage? Anyway, in all honesty the music was so good this week I couldn't hold myself back from throwing myself into it. I loved what came out of my instrument, but by the time last night's concert was over I had paid for it with those five enormous shocks of pain.

I always tell myself that each day is a step in the right direction, to keep plowing forward and someday I'll get there. My gut tells me the brain shocks will die back down again now that I got a good night's sleep and I have a few days off to recuperate. I'll live, and compared to a year ago or even six months ago I am so much better than I was before.


  1. I think you know yourself better than anyone else, and I think you're absolutely right... when you push TOO hard, you pay. Lyndsay is the same way. That said, pushing ones self is necessary, as long as it can be balanced with rest. From everything I read, you're doing absolutely fantastic. You are an inspiration for others going through the same things. Plus, it's kind of cool to be able to say, "MY friend in Michigan... the musician-slash-composer who also has craniopharyngioma..." Keep up the good work my friend!

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