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Sunday, July 25, 2010


Approximately one year ago I began complaining to my doctor about morning headaches and other signs that could signify the presence of a brain tumor. My doctor took all of this very seriously and—as much as I can tell from a patient's perspective—he did all the right things. He studied my optic nerves carefully (which looked perfect) and told me the next logical step would be to order an MRI, a big and expensive procedure which both of us thought was too severe an assumption to make at the time. I mean, I wasn't having grand mal seizures or anything. I was just having annoying morning headaches. They could have been hangovers. [Editor's remark: the last sentence is a joke.]

"There's another symptom too," I told my doctor at the end of that visit a year ago.

He kept writing in his notes and asked, "Yes? What else?"




"Uh . . . what, uh . . . can you spell that?"


"Is that a French word?"

"Originally. But it's part of the English language now. And it's handy to remember for Scrabble. Ennui."

He wrote it down. "Well, I learn something from you every appointment."

"Thanks," I said.

He finished writing the word in his notes, studied it and shook his head in disbelief. Suddenly, he blurted, "Wait, what does it mean?"

"Oh," I said. "A feeling of listlessness is probably the best definition. It's more like I have lost my drive or desire even though I have many things in my life I find interesting."

"You're depressed?" he asked.

"No, no. Definitely not depressed. I've been there, and this isn't that. But I feel squished in some way. My spirit is crushed even though I know it shouldn't be. I get exhausted thinking through things and I don't see the point. But I know there IS a point. You see?"

My doctor waved his pen in a circling motion and said, "So . . . you feel your life has become . . ."

I interrupted and spoke with finger quotes, "Like I feel more 'Kafka' than 'Kierkegaard.' Comprende?"

He did not comprende.

I thought some more. "How about this: It's like the 'oomph' is gone from my life."

"Aha!" he said, and began scribbling.

In retrospect, I was suffering from all sorts of things as the tumor began expanding: my testosterone was dropping to nothing, my diabetes insipidus was draining nutrients from my body, my asthma was draining my will to speak, my optic nerves were being twisted out of focus and my hypertension was keeping me paranoid about everything.

As I await my next major round of tests on August 4 (the first since May), I can't say everything feels perfect. In fact, there is a lot that doesn't feel right. In the past few weeks I have dealt with morning headaches again, several strange bouts of disorientation and moments when my eyes go in and out of focus. For the past several days I have woken up to the "tingling scalp" that was all too familiar before and after both surgeries. I described it to MJ this morning as the feeling of bubbly cola fizzing along the inside of my skull, along the top and behind my eyes. It's very annoying.

Most of all, an overwhelming sensation has pressed into my spirit recently, and MJ can see it too. It feels like it has a color this time, an aura of pale rosy pink mixed with bits of dull brown and a sickly green. I felt this way before, one year ago, and despite my desire to fight it and make it go away it hangs around all the time now, just about every moment. And this time my doctor will know the word and its meaning when I tell him during a regular appointment next week: E-N-N-U-I.

Tuesday, July 6, 2010

Bedside Manner

I had a "visual field" test this morning with the optometrist whom I had sought originally when my eyesight was dimming last September. Long story short, the test was fairly normal but there are a few darker blotches, possibly of some concern. I can't compare the results to anything the neuro-ophthalmologist has been tracking, but the tests were faxed over to the neuro in case he wants me to come in to double-check something on his equipment.

More interestingly, not only did my optometrist remember me but she was visibly pleased to see me again.

"I was so excited when I saw you were coming in," she said. Then she pointed, "I keep your file on my desk every day!"

"Really?" I asked. (In Internet lingo, I might have typed, 'wtf?').

"Sure," she continued. "I'm going to make you my 'case' for a presentation. It's next November."

"Great," I said. "Then you have a lot of time to prepare."

"Well, applications are due at the end of the month, so maybe it won't be until the next November."

I thought about that and said, "Maybe if you wait I'll have some more interesting things happen to me. Craniopharyngioma patients are like an open-ended storyline."

"You bet," she said. "And I don't think I'll see another visual field like THIS for a while." She dangled my original scan in front of me which looked like map of a lake with various depths shaded grey and black.

Now that I know what regular visual field tests tend to look like on paper, I honestly can't believe how doctors can keep a straight face when they have a talk with patients about terrible test results.

"Let me ask you something," I said while pointing to my original test scan from last September. "When you saw this last year, you had to know it was a tumor. But we talked about how I should probably see someone to get a few more tests, get an MRI, to be certain before we jumped to any conclusions."

"Right," she said.

"Didn't you just want to shake me and say, 'Oh I'm soooo sorry! I think you have a . . . a BRAIN TUMOR! I think you are now in for a world of pain and constant monitoring and surgeries for the REST OF YOUR LIFE . . . [sob]."

We both laughed, because in retrospect (for me, at least, with my very weird sense of humor) it was quite funny.

"Yes," she said. "It's hard for us too, you know. But it is critical to do things a certain way, very carefully with sensitive situations like this."

Of course, she was right. I wouldn't have wanted it to have transpired any differently last fall. And that is probably the reason she is a doctor and I am a composer. One follows the rule book and the other burns it.