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Monday, June 6, 2011

Medical Update

Okay, enough people have been bugging me for an update. There have been some interesting developments, but in all honesty I have been cutting myself off from everything until I finish my latest composition (a clarinet concerto) due in less than a month. Blogging eats up time, you know!

Anyway, and most importantly, the Eastern Phoebe—the irritating songbird who singlehandedly (singleclawedly?) derailed any hope I had for composing music last summer—has not returned. In the endless turf wars of the avian community it looks as though Chipping Sparrows, Woodpeckers and Scarlet Tanagers have forced my dear Eastern Phoebe out of the high rent district. Don’t let the branch hit you on the way out. If you come back, please learn more than three notes.

In a few sentences, this is my current situation. Next round of tests is in July with the neuro-ophthalmologist. With regards to the tumor re-growing along the optic chiasm, these tests are the most telling. Two months ago my numbers were good with the endocrinologist who is overseeing my hormone replacement therapies. One level was slightly low and it is being re-checked next week. The tiny speck on my MRI may or may not have grown, depending on how you interpret the cross-sections of the latest imaging. It looks about the same to me, for what it’s worth.

Probably as a side effect of the hormone replacement therapy, I find myself more susceptible to allergies, asthma and infection. Over the past few months I have fluctuated several times between healthy and bedridden. Dust, pollen and Noah’s slobbery kisses can be downright lethal for my asthma. If I get the wrong stuff in my lungs I can be out of commission, hacking endlessly, for days. After my bout with pneumonia this past winter I have learned to keep my hands clean at all times and to recuse myself from dusty yard work or dog brushing. I just can’t do those things anymore. The thought of extreme exposure without my rescue inhaler scares me.

During the last weeks of the symphony season I had a recurrence of the “brain shock” phenomenon. But now they are gone again. The painful electric shocking sensation I get when transitioning from active to passive mindsets is deeply unsettling when it is happening frequently. I still don’t know why they happen. Or why they go away. I am not taking any medication for them (for a while I was on Trileptal). This is one of those cases where, if I had been given a new prescription this time, I might have thought the shocks went away because of the medication. But I decided to “ride them out” this time and—lo and behold—they went away on their own.

I don’t know what else to do if the shocks come back again. (I assume they will.) They are so terrible, yet they are over in less than a second. Once the shock has passed, there is no telling if the next one is going to be in five minutes, five weeks, or five months. I don’t know what any doctor could do about this. Certainly, I don’t want to add another medication just in case I have an unpleasant nanosecond in the next few months. At a certain point, you have to weigh the pros and cons of trying to fight something. Trying to make plans for the next brain shock is like knowing you are going to die someday. You know the date is out there, but what can you do about it? Go on with life as normal. Live happily. It’s never perfect, but so what? The ability to live any life happily comes from inside you and it’s not related to things you can’t control.

1 comment:

  1. I truly do hope you write a book about all of this one day. Reading your posts puts me there, and gives me food for thought. I'll add a chapter of everything Lyndsay goes through as well. You'll make gazillions.