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Wednesday, December 8, 2010

Arms Control

Hello, everyone. This update will be short because I am typing it one-handed. My right arm collapsed on stage a few weeks ago. This is the arm that supports the weight of the oboe. I don't know how else to put this, but my arm just completely lost all muscle control and I had to balance my oboe on my knee for the rest of the performance. My fingers worked but my right thumb was totally useless.

I haven't been that slowed down by this. I am doggedly determined to make every day work one way or another and not miss any performances. As a result of my stubbornness I have needed to string together a number of MacGyver-like solutions. The day after the initial collapse I dragged a camera tripod on stage on which I could rest my elbow at a precise height for playing. Since then I have been rehabbing my thumb, hand, and arm with immobilizing braces, a brass rod support for performances, physical therapy and rest. My orchestra's management responded to my situation within hours with a special black armchair in which the right armrest had a block of wood secured to it with concert black duct tape.

But why did it happen so suddenly?

My first guess—that this is just tendonitis—is making me wonder. Doing my own research in advance of upcoming neurologist and endocrinologist appointments, I am turning up plenty of hits online relating to my thyroid hormone replacement therapy and especially side effects of my diabetes insipidus. Regarding the latter—in which my body loses too much liquid which I counteract with a nasal spray—there is a danger of low potassium in my body which can lead to muscle collapse. With diabetes insipidus corrected by a nasal spray the common side effect is to never feel hungry. I always feel "full" these days and everything tastes salty. I hate to eat most of the time and therefore I tend to forget that a 6'4", 230-pound person can be malnourished.

I'm fixing all this. I am taking supplements carefully now and my arm is gaining strength again. I am hard at work on a new composition set to be premiered early next year, so I am learning how to compose with only one hand. It takes twice as long!

Saturday, October 2, 2010

Good Test Numbers

The news keeps getting better. I had a "numbers check" with my endocrinologist yesterday. The craziness of finding a balance for all my hormone levels is sorting itself out. Endocrinology is a tricky subject within medicine because you can't micromanage too much. The body responds slowly to hormone replacement therapies and if you increase or decrease dosages too quickly you can make a mess of yourself in no time.

My testosterone, once scoring a measly single-digit seven (when normal is 300 to 800) now registers off the charts at 1130, an increase of over fifteen thousand percent from my initial recovery period. Burning within my soul now is a secret desire to crush things. Soda cans, tree branches, small farm animals. I must learn self-control once again.

My return to full-time work also has gone more smoothly than I had anticipated. Coming home from our summer of seclusion in the quiet woods, I was worried about how the workload would affect me. I had turned resting and healing into an art form and it concerned me that I might be run into the ground after the first week, the summer behind me a complete waste. But it looks like our plan worked. Whatever healing or reordering inside my head that had to take place seems to have settled in. I feel stronger now, and also for the first time I get those much-needed second winds when I play a three-hour rehearsal or concert. Before, it always felt like starting at the top of a hill and then rolling straight into a ditch by the middle of the concert. No energy in reserve to get me to the finish line. But now I feel fine with that.

I have had a few, fleeting moments where the "auditory aura" phenomenon has hinted at coming back. A few seconds here or there, happening every few days. But this is nothing close to the half-hour-long episodes I experienced previously. I don't know why they started or why they went away. My best guess is that my surroundings in Grand Rapids are filled with more audio cues to keep my brain tuned in to the here and now. Cars whizzing by, phones ringing, or a regular work schedule are all "cues" that segue your thoughts from one point to the next. Nestled deep in the woods, on the other hand, things feel more open-ended and there are not as many audio cues to encourage your thoughts to follow a straight line. It is wonderful for creativity and composition because there are no interruptions to dilute your imagination. But the quiet and solitude of the woods also allows for something as complicated as an auditory aura to bloom fully.

Monday, September 13, 2010

Acorn Music

Good morning again, everyone. This morning I woke up again before 4am. But this time, no sirens. I let Noah out. No screaming. And no low brass music either. Right now it is so quiet I can hear Noah's toenails click on the floor in the next room. (Although perhaps I am imagining that.)

Yesterday continued to be a strange day. Though the worst of it was in the morning hours, I continued to experience what I assume are "complex auditory auras" all day. Best I can figure it, my brain does one of two things: 1) "Tape loop" a sound I have already been hearing (like my wife's guitar playing) or 2) "Musicize" (I just invented a word) sounds like wind or trees rustling. For the latter, I can understand why this phenomenon is more common amongst trained musicians. It is in our nature to "find the music" in every sound.

"Go home and listen to your dishwasher!" declared my first year ear training teacher at Juilliard. "What pitch is it humming at? Listen to taxicabs honking, people's voices, subways. Find the pitches!"

Forever after that, a new world opened to me. I not only turned my ears "on" while playing but while doing everything. Doorbells, ambulances, birdsongs, Mozart. It was all equally challenging to "find the music."

Yesterday, acorns were falling from the big oak tree in our yard. When some hit the window I "heard" actual music playing when the pattern of the acorn clicks spawned a good idea in my head. In the past, I would do this all the time: create phrases in my head that were derived from sounds I picked up. This time, though, the music was actually "out there," literally playing as real as if a group of violinists were playing accented harmonics in the other room (this is what the acorns on the window triggered). The difference is I did not have to "think it up" for it to exist. The music was already composed for me, parts printed, musicians rehearsed, now performing in the next room. Live. Yet all of it happened instantaneously, before the acorn went from the window to the ground. Someone else composed the music because I did not recognize it, yet that person had to be me.

We were outside a lot yesterday, putting away things and getting the house ready for colder weather. I heard music and miscellaneous sounds all afternoon. In the morning it was worse, with extended periods—20, 30, 40 minutes at a time—where it would not stop, but by the afternoon it was reduced to fleeting episodes, just a sound here of there that was not "actually there."

For example, I carried something to the outside of the garage and when the wind picked up I heard an unnatural trilling sound in the big oak tree. The tree sounded like a telephone ringing. Not "like" a phone ringing but an actual phone ringing. It was a tree-lephone.

"Are you going to get it?" MJ asked, her arms full of small items.

"What, wait. You hear it too?" I asked.

"The PHONE'S ringing!"


I dashed inside and snatched the extra phone in the garage. It then occurred to me I could be heading down a path where I might "hear" something for "real" and THEN I will have to decide ... is it real—like, for real real?—or is it just real in my head? Which one is it? Is is live or is it Memorex?

Such dilemmas have yet to present themselves this morning. As I mentioned, it is as quiet as Kansas in my head right now and nothing is different between yesterday morning and this morning (in terms of medication changes, anything I ate or drank, or anything I did yesterday). I did receive a lot of feedback yesterday in the form of comments, emails, etc. I will be sorting through them today (I was just too overwhelmed to read anything yesterday), so thank you so much for all the information and leads! Let me just say this: I promise everyone if I ever feel "untreated" by my medical team I will demand to see someone more specialized who can help me. But keep in mind that what I have described so far is not really a chronic condition. Yet. (Cross fingers.) At this moment it is more like a curiosity, and it has happened only twice now. I will report it. It seems—just like with my recent "brain shocks," which were horribly painful for a while but are now not occurring at all—that I go through patterns of strange events in my head for a while ... and then they pass. These auditory auras are probably the next thing on the list, and I hope these will pass too.

Maybe next I will start seeing things that are not actually there, like the referee at the end of the Lions-Bears game.

Sunday, September 12, 2010

The Siren

Good morning, everyone. It is just past 5am and I have already had quite a day. At 3:15am I was woken by the siren. I rose from bed and walked around the house, swatting at light switches and trying to find the source of it. We are deep in the woods. There are no sirens. But I could hear it outside somewhere, off in the distance, just over the tops of the trees.

Yesterday I noticed some strange things happening again. With the sun in my eyes the high pitch in my ears blared again. When I closed and opened my eyes, the pitch changed. Light relating to pitch change has been an issue before with my ear ringing. It hasn't been that way for a while, but here it was again.

By 4am the siren fell mute and I returned to bed. At 4:27am, it returned (a little louder) and I rose again. I was now fully awake. And now our dog Noah had to go out. When I let him outside I followed him so I could look up at the stars.

The screaming startled me. It was off in the distance. Make no mistake, it was a stadium full of people screaming, just beyond the treetops. This was not screaming I was imagining in my head. This was actual terrified screams I was hearing.

I slapped myself -- hard -- to make the screaming stop. Like switching channels on a radio, the noise changed to music, a loud chorus of low brass instruments alternating between two chords, just beyond the treetops. I was completely awake, not groggy.

MJ greeted me at the door when I returned inside with Noah. She saw how I was visibly shaken, almost in tears.

I am not going to allow myself become a victim of this. As I write these very words those two brass chords are sounding outside, right now. They are real, and yet they are only real because I am choosing to hear them. I can see how people can be driven insane by this phenomenon, and I must find a way to stop it right from the start. I cannot let this spiral out of control because it really will [end of sentence deleted by me on the second reading.]

In two more days I have an MRI (that has been scheduled for a while) so I don't see much point in running to a doctor. As soon as I post this I am going to lie down and try to relax, or distract myself with reading or a crossword. Sirens, screaming, brass music. It has been a loud morning.

I will make this stop. I have to.

Sunday, August 29, 2010

Complex Auditory Aura

Thank you to my online friends for enlightening me on what I likely experienced more than a week ago. I have done a lot of reading about what is called a COMPLEX AUDITORY AURA and—though every case is different—I would guess this is what I experienced. Apparently it happens more frequently with trained musicians. So far it has only happened that one time with me.

I have had several days to digest the experience and I guess what really bothers me is my brain perceived something that was not there. We like to think the world is out there and what we pick up with seeing, hearing, touching, tasting and smelling pretty much sums it up for us. The brain is like Grand Central Station: all the senses are accounted for, computed and a clear mental image emerges of what is actually OUT THERE.

But what about the times when you are clearly sensing something—for an extended period of time—and yet you know this cannot be? As I wrote in my last blog, this was not like a tune stuck in my head nor was it music I was imagining. This was music I could hear, music that was playing live in the other room. It played on for over an hour. Thankfully, it was the sound of my wife's classical guitar and not a brass band.

I casually mentioned this to my ENT surgeon the other day (who performed half of both my brain surgeries). My surgeon also happens to be my next-door neighbor so there are plenty of opportunities to run into one another. He thought my experience was interesting and he mentioned cases where people have come to him hearing voices, wondering if they have a computer chip in their head.

"A computer chip IN their head?" I asked. "The voices are INside their head?"

"Yes, like a voice inside their head telling them things."

"My experience was a sound OUTside of me. It was in the other room and I had to go find it."

"That's less common," my surgeon said.

I've heard that before.

There have been a few other symptoms to report, mostly a continuation of what I have written before: ear ringing, occasional brain shocks (mostly under control with medication), bouts of disorientation relating to overstimulation with sounds and colors (grocery store = evil), and strange moments when one or both of my legs simply do not respond when I am walking. For the last symptom, it is like I have to say, "Hey, leg. Move it!" And then my leg responds, "Huh? Oh, sorry."

I have another two weeks until I will return to playing at least some oboe again. This summer—due to my wavering condition—I had to sit out what is usually the highlight of my musical year: The Cabrillo Festival of Contemporary Music in Santa Cruz, California. Last summer I experienced a few moments of dimmed vision and headaches during concerts that I dismissed as either jet lag or too many bear claws from the breakfast crew. The espresso in Santa Cruz is also lethal, so I assumed whatever was going on in my head was not anything to worry about. Let's face it: just like Monty Python's "Spanish Inquisition," no one expects a brain tumor.

To all my colleagues at Cabrillo, thank you for the sweet card! I was following all of you through Facebook and I was reading all the articles and reviews. You rock! And I'll be back. It killed me to miss the best year ever, but then again every year at Cabrillo seems that way, doesn't it?

Tuesday, August 17, 2010

Can't You Hear It?

George Carlin once skewered the subtle differences between "sick" and "don't feel well." When you are "sick" people leap to action and surgeons come in on their day off to operate. When you "don't feel well" you are simply a pain to everyone around you.

What I have been experiencing these past few months is the latter.

Between my occasional vision changes, pinpricks of light, brain shocks, light sensitivity, disorientation episodes and aversion to avian annoyances I am the walking poster boy of "don't feel well." I exude a general malaise but no one really knows what to do with me. By the time I see a doctor my symptoms have gone away and I am advised to keep resting, to keep healing and to try to stay the course.

Now there is something new. Again. Another strange occurrence to add to the list. I am hoping for comments because—for once—Google turns up nothing. Here's what happened:

MJ practices her classical guitar every afternoon. I like this instrument and often I will plant myself on the couch in the next room on purpose, writing while she plays. It is a lovely sound. Yesterday, when she was done, we sat together so we could talk about the rest of the day.

"Do you hear that?" I asked her suddenly.

"Hear what?" she replied.

"Someone is still playing guitar. Come on, can't you hear that?"

"Ale, I'm RIGHT HERE. How can you hear guitar music? We're deep in the woods."

I stood and walked to the doorway where I heard the music. "Can't you hear it?"


I was frustrated. I stood in slightly different spots, seeing if it was the wind or something else. "No, it's definitely a guitar," I said. "It's you playing, but softly. You're not playing guitar right now?"

She gave me a confused look, turing her palms up slightly and looking into her empty lap.

I asked, "There's not a recording going? Did you record yourself and it's still playing?"


"I can't believe you can't hear this. Are you sure you're not playing right now?"

"Ale . . ."

The guitar music played on, softly and peacefully. It was not the same thing as when a tune gets stuck in your head. This was different. The sound was outside of me, playing somewhere. I wanted to find it.

MJ said, "Why don't we sit on the porch for a bit? You can relax."

We went out on the porch. It was windy and loud but the temperature was nice. I sat and closed my eyes. The guitar music resumed.

"You don't hear that?"


"Oh come on. It's just off in the distance. A guitar."

She looked up from her book. "I promise you I don't hear it."


I sat up and examined the sky. A ray of sunlight caught my eye. Instinctively, I shut my eyes because lately I have been more sensitive to light.

Ping! A plucked guitar chord rang very loudly as I closed my eyes. This surprised me, so I blinked my eyes three times in a row as I tried to clear my head. Ping! Ping! Ping! Three more guitar chords, all the same.

I sat back again and looked at my wife. "That was weird."


"I think it's the light. Or some of my facial muscles. When I blink, I hear a chord."

I tried it some more. Blink, blink, blink, blink. ("Ping! Ping! Ping! Ping!") Interesting.

For the next hour I tried to fill my head with something else so I worked through the Wall Street Journal acrostic puzzle. The music stopped at some point but I still shake my head at how the whole incident was so strange. I was not using abstract thought to conjure music I had once heard. I do that all the time. This music was actually sounding somewhere and I was hearing it, although I know this is impossible.

Add this to the laundry list of other strange symptoms that come and go. Maybe somewhere out there George Carlin is strumming a guitar, laughing at yet another person who isn't quite "sick" but just "doesn't feel well."

Thursday, August 5, 2010

New Tests

Yesterday was quite a day. It was my first complete round of tests in two months. The very, very good news is there is no sign of tumor regrowth along my optic nerves. This is the most likely place for it to come back so most of the time they were studying my eyes.

I still have some serious symptoms—and the neurologist recorded all of them in great detail—but I am told they are more likely related to an ongoing recovery from the two brain surgeries last fall and not another regrowth of the craniopharyngioma tumor.

"But I read something on the Internet," I told my neuro-ophthalmologist.

"Oh?" he asked, staring into me like the little RCA dog.

"Yes," I said. "In some cases a craniopharyngioma can metasta ... metisasso ... uh."


"Yeah. In some cases the tumor can ... what you said ... to other parts of the brain and regrow and expand there. Could my symptoms of brain shocks, disorientation and tingly scalp be symptoms of that?"

"I suppose it's possible, but very unlikely," he said. "You would be having other symptoms too. And don't forget craniopharyngiomas tend to regrow very slowly anyway. An MRI in a few more weeks will spot any signs of a metastatic tumor."

I proceeded to tell him about my last experience in an MRI machine: complete torture.

He offered, "I can prescribe Atavan."


"It's a calming drug that will relax you for the experience. But only if you need it."


He asked me some questions about my life and my career.

"How's your composing going?"

"A review last month compared me to Andy Warhol. I think that's good."

"Oboe playing? Still feel like you're healing every day or have you reached a plateau?"

I moved my hand between us like a flatline. "Plateau." For some reason I spoke the word with a French accent.

He checked a box. I hate it when they do that. It doesn't capture nuance. Did he check "French?"

I added, "There's only so much I can give every day. If I perform in the morning, I'm useless for the remainder of the day. If I have a performance at night, I have to convalesce all day to prepare. It's been this way for months and I worry this is as good as I'm going to get."

"It will get better," he said. "Keep resting."

"Oh, I'm resting. I watched all of 'The Bachelorette.' That's how 'resting' I am."

Just then a fire alarm went off. "Code red! Code red!" a voice spoke over the intercom. He poked his head outside and I saw lights flashing up and down the hallway from the emergency units.

He came back inside and sat.

"Don't worry, that's nothing," he said.

Monday, August 2, 2010

The Thousand Points of Light

This morning I arose at my usual time, 5:27am. I don't set an alarm but I always wake within three or four minutes of this time. I stared at the ceiling and watched the pinpricks of light blink on and off. They were like stationary fireflies, single points of light blinking here and there. It was peaceful. Stargazing. I drifted off for a moment dreaming of how much I like the ceiling of the bedroom at our cottage, how we had especially put the blinking lights in the ceiling which sparkle during the wee hours of the morning . . .

I bolted awake. What lights? In the ceiling? There are no blinking lights up there.

I opened my eyes wide and stared into the dark ceiling.

Blink. Blip. Sparkle. Blip. Blink.

I closed one eye, then the other (something I do several times per day). Both eyes could "see" different pinpricks of light which moved when I switched from one eye to the next. This confirmed the lights were not actually up there and were not a reflection of something outside.

When my brain shocks were at their worst I experienced a visual disturbance I dubbed my "electric butterflies." They sparkled inside my eyes as I was sucked into the vortices that detonated the electric impulses in my head. This (in part) led a neurologist to prescribe a medication used in the treatment of Epilepsy. The brain shocks have mostly gone away (perhaps due to the medication) but from time to time I still get my electric butterflies.

This is the first time I have seen pinpoints of light in the distance. My neuro-ophthalmologist (who I am seeing on Wednesday for extensive tests) wants me to take note of every vision change. The craniopharyngioma tumor had been wedged between my optic nerves, so any little change could mean the tumor is making a move again.

The complicated part is I am now on the wrong side of forty, when every person on the planet begins to experience . . . vision changes. Hence, every little thing that panics me could simply be what every adult over forty experiences.

"Oh yeah, I remember when that happened," is a common refrain from friends when I explain my most recent vision changes, usually in a cold sweat.

But I must be diligent about taking notes as I continue to crash-land into middle age. With this morning's blinking lights on the ceiling, I could hear a comedian's voice in my head describing them. Much like the Stay Puft Marshmallow Man from "Ghostbusters," once I have made the mental association, it is irrevocable. As I sat up to rise from bed, all I could hear was Dana Carvey doing his memorable SNL impression of the first George Bush: "The thousand points of light, the thousand points of light, the thousand points of light . . ."

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.

Monday, June 28, 2010

Vision Changes

It has been a while since I have posted an update because there has not been much to report. I did have yet another brain shock yesterday of medium intensity but my condition in that regard is nothing like the 20 per day I had been experiencing.

My eyesight, however, is changing. I will not be tested until we get back to Grand Rapids in another week but up here in the woods I have found myself squinting a lot to make things out. My new Walgreen's dorky reading glasses—a fun curiosity I wasn't sure I needed just a few weeks ago—are now a necessity. And the vision loss in my right eye (blurry in the distance) is even worse.

This is not necessarily bad news. Light or color loss (not blurriness) is what the doctors are really concerned about and my vision is okay in that regard. My eyes are just getting older. I'm over 40 now (but only thiiiiiis much) and everybody starts losing some vision around that time. It's probably just a strange coincidence.

The other thing I have been dealing with is harder to measure. My sense of disorientation (and perhaps dizziness) is back. Following the first tumor resection I experienced a significant amount of dizziness and disorientation for several months. Even when I made it back on stage I had to grasp the music stand when standing for bows. Sudden changes in direction—both physical and mental—bothered me. For a while it went away as I healed but now it seems to have returned. It could be many things including allergies or the unfamiliarity of my brain processing images not pristinely in focus anymore. Still, it is unnerving to feel like a pilot flying in the clouds trying to keep the wings level by staring out the window. Even if a lot of me feels like it is healing there are other parts that are out of sync.

In another bit of news, I read with interest that Scott Hamilton underwent brain surgery recently to remove a craniopharyngioma tumor just like mine. One thing I have discovered about adult craniopharyngioma patients is—because of their extreme rarity—we all find one another on the Internet to read each other's blogs, compare notes and discuss symptoms. Assuming my theory is correct, let me say this to a new reader of mine:

Hello, Scott Hamilton! Welcome to my blog, God bless you, and—from one craniopharyngioma patient to another—I wish you a speedy recovery!

Monday, June 7, 2010

The Songbird from Hell

The symphony season ended in late May and does not resume until July. I have cleaned everything off my plate and I am focusing on one thing: HEAL. Tumor, tumor, go away and don’t ever come back! We are doing everything possible to keep stress down and we have been spending all our time in the peace and quiet of the woods surrounding our cottage.

But how does one live in peace? Anytime my brain has free space I fill it with something. Sometimes I can’t even sleep because my head is full. MJ told me to fall asleep by counting sheep. I have never done this so I tried it. Before I got to ten, one of my sheep tripped and did a YouTube-worthy face plant in the mud. I burst out laughing.

“Stop it!” MJ said. “It should be peaceful. One sheep hops over the fence, then another, then another. Just one sheep after the other, all the same. Peaceful.”

Hmm, peace. I tried again. One sheep cleared the fence. Yay for the sheep. The second one turned to look at me before jumping. It had Groucho Marx glasses on its face and it smoked a cigar. I held back the laughing but MJ knew something was up.

“Last warning,” she said.

I shook it off. I exhaled and stilled myself.

“Do I have to start counting back at one?” I asked.

“It doesn’t matter,” she said.

I closed my eyes to count more sheep. But when I looked at the fence all the sheep were gone. In my imagination I turned 180 degrees to look behind me. All the sheep had stacked themselves into the kind of cheerleading pyramid that wins competitions and is shown on local newscasts. The one on top wore dark sunglasses and spoke: “I’ll be baa-ack.”

Welcome to my mind. It never rests even when I want it to. I try to live in peace but the hamster wheel up there is always spinning. I’ve never been diagnosed but I am certain I have some kind of obsessive or compulsive streak. If my mind is normal the human race really is screwed.

Yet compulsive streaks can be a good thing. I have known all my life the central struggle within my own mind revolves around figuring out how to set myself loose in the right direction. More than anything this is why I have a love-hate relationship with composing. Once I begin writing a piece it is a maddening and tortuous process I cannot stop.

So how do I live in peace and take a month off to heal? How is there peace if I live in the woods and dream of music that won’t stop once I start it? As Bukowski writes, “Hey, Tully baby, nobody who could write worth a damn could ever write in peace.”

My best ideas come as I wake up. I lie in bed, thinking of musical phrases, repeating them until they are right and then turning them upside down and backwards as a fun mental exercise.

“Go back to sleep,” MJ says when I realize I am not just dreaming but outwardly conducting five beats in one hand against four in the other. I have been shaking the bed without knowing it. This can suggest all sorts of things to a partner half asleep on the other side of a king mattress. But MJ knows me well enough to know when the bed shakes it is because of a polyrhythm.

I put my arms down, lie still and think through the phrase several more times. If I don’t firmly seal the idea in my head it won’t be there after I let Noah out, let Noah in, give Noah his Kong toy smeared with peanut butter, give Noah his morning pills, take my own pills, nasal sprays and gels, start the coffee, feed Noah, print out the morning New York Times crossword puzzle for me and the New York Times 6x6 KenKen puzzle for MJ . . . where was I? If I don’t seal the idea with my eyes closed in bed it is gone by the time I am fully awake.

It is quiet in the woods before the sun rises. A few mornings ago I thought through more musical ideas until they were set. Genius? Of course! I was ready to rise from bed.

Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE.

“What the . . .” I thought. I opened my eyes and looked out the window. I couldn’t see anything but obviously a small bird was chirping its morning call.

Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE.

It wouldn’t shut up. I finally saw the outline of a tiny bird perched on the branch of an old oak. It was smaller than the palm of my hand yet it sang with the willpower and fortitude of a heldentenor.

Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE.

I scrambled to find a sheet of manuscript paper because my computer would take too long to boot up. I scribbled a few notes with one hand while plugging one ear with the other.

Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE.

It was no use.

“Shit,” I thought. I looked at what I had written: Do-Mi-Sol-Fa. That was it. “Great job, Ludwig,” I thought. “Four more notes and I’m on my way to a piano etude.” I had also scratched out, “Str fast scales / tbns muted < > / ww’s syncopat.” Wow. Genius indeed. Not.

Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE.

The little bird chirped the same four notes all morning. I tried composing with earplugs but it was no use. One little bird was killing an idea that would win me a Pulitzer someday. Not.

By noon the chirpenator had stopped all of a sudden and once again I could appreciate the balance of sounds in the woods. The wind rustled the leaves in the trees. The seagulls and loons called in the distance.


“Hey, want to have lunch on the porch?” MJ asked. “It’s nice out.”


I laid two placemats on the slatted table and found some napkins and silverware. MJ reheated and sliced a roasted lemon-rosemary chicken breast from the previous night’s supper. She mixed together arugula and other spring greens from a local grower and mixed these with sherry vinegar and olive oil. She plated the salads, arranged the chicken slices along the side and shaved Parmigiano-Reggiano cheese on top. She ground fresh pepper over the plates and sprinkled crystals of fleur de sel over it all. As if adding an exclamation point to her creation she leaned two slices of triangular homemade sourdough toasts against one another to form a kind of teepee rising up from the plate. During this time I had done my one job of filling two glasses with ice water. We carried everything outside and Noah followed us.

“Cheers!” we said and clinked water glasses. “To healing in peace!”

I stabbed my fork into the salad and took a bite. It was delicious. I sat back and watched the sun glisten over the lake. Beautiful. Peace. I felt at peace, my brain and my body healing again, in peace.

The little bird flitted across my line of sight and landed on a branch nearby.

Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE.

“I’m gonna KILL THAT THING!” I blurted as I leapt from my seat. My knee hit the table’s leg and water spilled into the salad plates.

“Hey, easy!” MJ countered.

“It’s driving me insane!”

“It’s just a bird.”

I pointed up to the tree. “No, he KNOWS he’s doing this to me. He WANTS to torture me.” I looked into the tree with fiery eyes. “And a little bird’s gonna PAY! That’s right you seed-ass mutha-FEATHER! I’m gonna kick you off this property if it’s the last thing I do!”

Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE.


I sat back down and ate the rest of the salad, fuming while MJ rubbed my shoulder.

Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE.

“He’s gonna pay,” I growled.

After lunch I booted up my laptop and went to a website that featured audio samples of birdcalls.

“What are you doing?” MJ asked.

“Trying to identify him,” I said. “I’ve narrowed the search to just birds of the Great Lakes.”

“How many is that?”

“Three hundred and forty-five.”

“And how long does it take to download each birdcall at dial-up speed?”

“Three minutes.”

She paused. “What are you going to do once you identify him?”

I tapped my index finger to my temple. “I’m going to THINK like him. Find out his natural predators. Then I’ll download sounds of his natural predators, transfer that to the iPod and play that through the outdoor speakers day and night until he flies away.”

“Why don’t you just play loud music to shoo him off?”

“Because I want to mess with his head and”—I rubbed my hands together—“make him question some of the choices he has made.”

The bird returned.

Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE.

“There he is again!” I said.

The little bird flew up to a branch, landed and a moment later flew around the back of the cottage.

“Get the binoculars!” I shouted. “I want to see what he looks like up close.” I ran around the corner.

“Up there,” MJ pointed.

I could see the outline of what looked like a chihuahua turd perched on a low branch. He flitted his wings suddenly and flew quickly under the side deck.

UNDER the deck. Hmm.

“Is he under there?” MJ asked.

“That’s where he went,” I replied.

We walked back through the cottage, went out the front door and walked around the outside where we could see under the deck.

“I’ll be darned,” MJ said.

It was a nest.

Game, set, match to the bird. I have no problem with setting boundaries between humans and wildlife—putting up fences to keep deer out, humanely trapping and relocating raccoons and rabbits, etc.—but a baby bird killer I am not. I don’t touch nests.

The bird flew back onto the nearby branch to sing a victory song.

Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE. Ree-raa. Ree-REE.

We went back in the house.

MJ said, “Why don’t you take a break? Run to the post office for a minute?”

“All right.”

I hopped in the car and drove to the little post office that sits upon one corner of our peaceful little town. After retrieving the mail, the girl behind the counter asked me, “You’re new here?”

“Yup. The little antique box right there. How do you get the mail in there, by the way. Are you a jeweler?”

She laughed.

“Anyway,” I said, turning to leave, “have a nice day.”

“My first boyfriend is moving back here,” she said.


“I’m divorced, see. So I saw my first boyfriend on FaceBook and I was like, ‘No way, is that totally you?’ and he was like, ‘Way.’”

“Wow, that’s so interesting,” I said, side-shuffling to the door.

“So anyway, I called him? And we, like, talked for HOURS! And the next day he calls and I tell him, ‘You are totally moving back here,’ and he was like, ‘I am?’ and I was like, ‘Way.’ Isn’t that awesome? He just has to wait for his unemployment to kick in and then he can come. He travels light and all he needs to take is his bike and his aquarium.”


“What do you do?”

It was the same as it was with the little bird. I gave up. I set the mail on the counter and talked. “I play in an orchestra. I compose music too.”

“No . . . WAY!”


She blurted, “I’m totally a poet!”

“Published?” I asked.

“No, you have to know people for that.”

“Do you have some of your poems with you?”

“No, but I’ll bring them next week. I’m only here filling in ‘cause I’m kind of low on the totem pole.” She mimed slipping her hand under a pile of dirty laundry. “Hey, maybe you can set my poems to music!”


I returned home, explaining to MJ about my new friend and why it took fifty minutes to retrieve the mail. I took out a sheet of manuscript paper and began writing a new piece. Though I haven’t read one word of our local poet’s work yet, my direction is clear.

Living in peace so deep in the woods, in harmony with nature, I know the music will begin:

Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE! Ree-raa. Ree-REE!

Friday, May 28, 2010

Health Update

It has been a while since I have posted an update, so I thought I would make a brief progress report regarding my rehab. I finished the season with the symphony without collapsing on stage and MJ, Noah and I are up north trying to focus on one thing for me: heal. Noah just passed his tenth birthday and -- for a doggie just hours away from death two years ago with failing kidneys -- he remains a model for me in how your spirit and your will to live must form the basis for any recovery. He inspires me every day and that is not an understatement.

For the most part, I can only say things are pretty good with my health. My brain shocks, for example, have nearly vanished during the past two weeks. They have disappeared as mysteriously as they had arrived. Maybe the medication is finally helping. Or maybe the shocks went away for another reason. In another month I may stop the medication to see if there is any change for the worse. There is plenty of uncertainty, but in general I would have to say things are getting better each day. I am learning what my limits are as well as where I can push it. MJ follows my progress closely and, along with Noah, I would not be where I am today without her. She also inspires me every day and that also is not an understatement.

Just the other day, for example, she declared me fit for an errand into town where I would pick up two more outdoor cushions from one of the bargain home improvement stores.

"Sure," I said when she asked.

We had bought two on clearance a few days before that but now my mission was to drive back and get two more so we had a matching set of four.

The store had only one left.

I wandered through the store and finally flagged someone in a uniform who looked like he wanted to help.

"Hi," I said. "There was only one of these left. Is there another somewhere else in the store or is this it for the clearance items?"

"Let me go check," he replied.

I followed him.

He walked back to the original bin.

"Nope!" he said. "It looks like they're all gone."

"Well, I knew that," I said. "This is where I got the last one. Do you have any cushions like this in the back, or in another store?"

"Ah," he replied. "Follow me. We'll have to look it up on the computer."

I followed him.

We arrived at a desk in the middle of the store with a computer.

He clicked, tapped the keyboard and scanned with his eyes. I waited.

"Yup!" he said. "There are five more in the central warehouse. We might get one."

I said, "Or . . . or they might go to another store?"


"Is there any way to make sure one of the cushions comes to this store?"


"How? How?"

"Hmm. Tell you what. When you check out at the cashier, tell them you want one more. Then the cashier will fill out a form that goes into the system, see? Once it's in thesystem it will generate a message -- called a 'do' command -- which comes to . . . well, actually that message will come right back to me. Then I'll make a request on the computer here to make sure one of those cushions comes to this store."

I took all of that in. Then I asked, "Why can't you do that right now? I'm telling you I want that cushion!"

"No, no. First it has to go into the system or I won't be able to do it."

I wandered around the store picking up a few more things we needed.

When I checked out I forgot to tell the cashier.

In the parking lot I realized my error and went back inside with my receipt.

"Hi," I said. "I just bought your last cushion on the clearance bin and I need one more to match it. The gentleman over there said to tell you so you can request another."

"You need to do that during the purchase," she said. "This is after."

I ignored that and said, "You have five cushions in your central warehouse. They are there right now. May I please have one of them?" I was miming karate chops with my hand to accentuate various words.

"Yes, I guess. I guess we could do that. But I'd have to make a special call."



I mention this funny vignette (which happened almost word for word) because, while driving home, it reminded me of some of the convoluted experiences I have had dealing with the grand beast that is a modern medical establishment. Though many of the roadblocks in medicine are organizational necessities, from a patient's perspective it can be frustrating from time to time to feel as if you need something that is right there and yet out of your grasp with just a little bit of red tape separating you from your proper care. Yet results are what count and I seem to have fared pretty well so far.

And I did drive back yesterday to get that other cushion.

Sunday, May 16, 2010

Tests Tomorrow

After speaking with me on the phone in person, the neuro-ophthalmologist has now decided four weeks is "way too long" to wait until my next appointment. Tomorrow morning at 7:30am I will be squeezed in for another round of tests.

The sudden vision blur is the main cause of concern. The good news is the vision changes do not involve light or color loss which would be a major red flag. Blurriness can be caused by many things including simple fatigue. It could be my own hard-headed attitude about returning to a normal schedule while my body is still catching up and adjusting to the hormone replacement therapy. The vision change is sudden, though, and this is the cause of (at least mild) concern.

I don't think anyone is too worried right now but I am once again grateful for my team of doctors who are watching over every little nuance of my recovery. There are about three hundred cases of my tumor in the United States annually—literally one in a million—and most of them are children. I am certain the rarity of my case plays into the medical team's extra care. If I have a sudden blurriness, no doctor can say, "Eh, don't worry about that. Most adult papillary craniopharyngioma patients in their early 40s get that six months after surgery." There aren't enough patients like me, I suspect, to casually throw away caution when little red flags present themselves.

In any event, we shall see what happens tomorrow morning and I will let everyone know. Thank you so much for reading!

Friday, May 14, 2010

Both Eyes Blurry

The determination from the neurologist is that there is nothing critical "to do" right now regarding the change in my eyesight. I had an MRI just days ago which was -- for the most part -- pretty clean and my EEG was inconclusive. The next battery of tests is only a month away and it's not like I am in any pain. Short of an operation, radiation, chemotherapy or a change in medication, there is little else "to do" besides make a note of it. The change in my eyesight has been duly noted in bold on my chart followed by an exclamation point.

On the other hand, I have another brief observation this morning that raises more questions. My right eye continues to be fuzzy in the distance, but now my LEFT (good) eye is fuzzy close up. Maybe if I stand at a 45 degree angle everything will be in focus?

Last night during the break backstage, I was explaining my current symptoms to colleagues.

"Look at that clock over there," I said while pointing across the room. "When I close my left eye the numbers split in two and the lines are fuzzy."

Mary Jane shook her head and said, "Are you kidding? I can't even see it's a clock. It looks like a snowball that far away. Be grateful you know it's a clock."

She was half-joking of course, but it might have been the first time I really considered what "needing glasses" means. All my life I have had P.E.R.F.E.C.T. vision, like everything is in high definition from every distance. I may be colorblind, but clarity has never been an issue before. Maybe I shouldn't confuse the issue of getting older and seeing the first signs of eyesight deterioration with the fact that a few months ago a recurring tumor was attached to my optic nerves. The issues could be related, but they could also be separate.

I have a direct dial to my neuro-ophthalmologist's assistant. She is the one who usually administers my tests anyway and she does the bulk of the interaction with me. She knows me and my file cold. She has welcomed me to call anytime. She has never rushed me off the phone and she always consults directly with the doctor if there is a question about anything. My instructions for now are to continue making observations about any tiny variations in my vision. If there is any sudden concern or pain I am to go directly to Emergency.

This weekend I am still able to play my oboe, but if my right eye gets any worse I may have to resort to an eyepatch again. It is the last Pops concert of the season and I appreciate the irony that last September—on our first Pops of the season—I resorted to an eyepatch on my other eye before it got so bad Mary Jane had me make an appointment with her eye doctor to see what was causing the problem.

Here's a new image I found of the original craniopharyngioma, taken 10/1/09. At this angle, I wonder if it was my horrible golf game that caused this in the first place. (Apologies for the strange humor. I'm in a weird mood today):

Wednesday, May 12, 2010

Sudden Blur (Right Eye)

A small update - I had a sudden vision change today and these are always supposed to be reported. I was at a meeting which included a power point presentation. My vision is usually excellent but I was having trouble reading the words and numbers on the screen. I tracked down the problem by performing the most basic test I do all the time: close one eye and then close the other eye.

When I closed my left eye the vision in my right eye was completely blurry. This is a sudden change because there is never any difference of clarity between my eyes. I confirmed it over and over, looking in different directions.

I sneaked (snuck?) out of the meeting and drove straight to the neuroscience wing which was just a few blocks away. I didn't even have a chance to call, and within five minutes of reporting my sudden symptoms to the receptionist I was inside being interviewed by my neuro-ophthalmologist's nurse.

I am not in any pain and I can't think of anything that precludes me from doing anything normal. Unless I want to become a professional eye chart reader I'll be okay, and my career as a pilot has been over since I started taking medication for seizures, extreme hypertension and exploding head syndrome. I am on the couch right now reading and waiting for a phone call (perhaps with instructions) from the neuro-ophthalmologist. Thank you for your thoughts and prayers!

Saturday, May 1, 2010

MRI Comparison

The most recent MRI certainly looks good on the tumor front. Excellent, as a matter of fact. Check out this "before" image:

And now here's the image from a few days ago:

No answers yet on why these electric brain shocks persist, but it's nice to see a clean scan in the area the craniopharyngioma tumor originally presented itself.  Yay!

Friday, April 30, 2010

MRI + EEG - 4/29/10

What a day.

I could not have dreamed up two more different experiences under the same roof. I have had many MRIs, but this time (with the same technician in the same machine) I was—let's just say it—traumatized.

"Wait, let me out!!" I screamed. I had only been in the machine five seconds. The technician rushed back inside and slid me out. My face was covered in tears. "This isn't me," I thought. She put her hand on mine to calm me down. "Can you do this?" she asked. I looked back at the machine, at her, at the room. Same place. How many times is this? What just came over me?

I said, "It's my arms touching the inside of the machine. I feel like I'm being cremated. It's too confined and I want to get OUT."

"Try holding your arms tight to your body so you don't feel the inside of the machine. Then just close your eyes."


I went back in. A voice came over the speaker, "Test starting. Please hold your head completely still for the next thirty minutes."

MRIs are loud, as in LOUD, as in L.O.U.D. I could take this audiological assault on previous MRIs, but this time it was pure torture. To make matters worse, the buzzing in my ears and the top of my head went haywire. "Any moment now, I'm going to have a brain shock," I thought.

I did.

My head detonated and I forced myself to remain steady. My toes twisted violently, but I kept my head still. This happened one more time. What can I say? I felt a deep, searing pain in my head and I had to force myself to remain stoic. If not, the test would have to be repeated (which is bad) or cancelled (which is worse). It was brutal. Nasty, nasty.

The technician slid me out of the MRI machine.

"That was horrible," I said. "Totally different from the other times. I can't wait to sit up."

"Stay still," she said. "We're only half done."

She injected dye into my veins and slid me back into the machine for another go. The entire test was repeated. I felt the same sense of being torn apart, tortured. I forced myself to remain completely still and to absorb any painful shocks. If I know the parameters I can take a lot of pain. I had two more shocks before the test was done. Also—and perhaps most notably—an enormous white circle of light exploded in front of my left eye. It didn't actually happen, obviously, but the visual effect was stunning.

Walking me back to the dressing room, the technician stopped. She always recognizes me from the symphony and I like her. Today, she had real tears in her eyes.

She hugged me and said, "I really hope I don't see you in this place again."

I staggered to the neuroscience wing for my EEG. This is in the new part of the hospital. Compared to the the stark, utilitarian corridors of the main building, the new neuroscience wing has a fancy tiled floor, fountains, stylish light fixtures and a large reception area for checking in not unlike that of a resort hotel. Noticing the lit waterfall trickling down one wall I half expected a waitress in a straw skirt to offer me a complimentary drink in a coconut.

The neurological testing suite exuded a quiet, peaceful energy. A Zen hum, if you will. A young technician greeted me and escorted me into a silent room.

"Have a seat on the bed," she said.

I replied, "This looks comfortable. I just had a traumatic experience in the MRI machine. I just want to lie down and sleep."

"Good," she replied softly. "That's all we want you to do."

Her tone of voice suggested immense empathy. I considered that the MRI and EEG could be part of a bad-cop-good-cop routine for interrogation. The MRI was waterboarding. The EEG was wine tasting with the head of the CIA.

I relaxed deeply into the soft bed while she attached twenty-three electrodes to my head.

"What do you do?" she asked. "Symphony," I said. She jumped: "WHAT? Oh ... MY GOD! Wait here!!!"

I wasn't planning on wandering off, but I waited nonetheless.

She came back yanking the arm of another technician. She pointed at me. "Guess who he is? Give up? He plays with the symphony and you always buy tickets to the symphony!"

"Hi," the new lady said.


The new lady left and my technician went back to attaching electrodes. It was tedious work. God bless her.

"Now I'm going to place this strobe light in front of you," she said. "Keep your eyes closed for the duration of the test."


I tried to make myself vulnerable, hoping for a brain shock. Flashing lights have been a serious issue recently.


—No problem—


—Bring it—


—Cool effect. Do that again—


—I felt as if I were rising off the bed, traveling into the light. I walked into a shower of photons, into another dimension. My brain felt peaceful, vulnerable, waiting, waiting—


"That's the end of the strobe," she said.


"For the next thirty minutes we want to measure your resting brain waves. Everything calm and quiet. Try to sleep."

I had one tiny blip that could have registered as a brain shock right then, but it was nothing like the huge jolts I had to endure in the MRI room. Not even close. I was so tired. I relaxed into the bed and slept. The technician told me I had a few "interesting dives" during the test.

The neurologist will be reading my test results tomorrow.

Thursday, April 29, 2010

Sleep Deprivation

I am sleep-deprived. This may come out funny.

My MRI and EEG are this morning. The MRI is routine by now, but I have never had an EEG before. I am supposed to make one of my brain shocks happen during the EEG, but the brain shocks are random. Try fasting for two days and then hope for an accidental burp. Most likely it won't happen.

Maybe this is what an adult actor feels like going into a first audition. "Sorry," he says. "This doesn't usually happen." "It's okay, it happens to everyone from time to time," someone says off-camera. "I just feel too much pressure," he says again.

I am sleep deprived. Have I said that?

A call came in yesterday from the EEG people. "ONE: no caffeine or chocolate twelve hours prior. TWO: be sleep-deprived, and THREE: don't have a lot of products in your hair." I have the third one covered no problem. I can't remember the first two because I am sleep-deprived, but I see the kitchen cabinets are covered in sticky notes ("No!" in my own handwriting) and the coffee machine is wrapped in duct tape.

My Epilepsy friend gave me simpler advice: "Just drink more than usual the night before the EEG." This presented a challenge. Nigel Tufnel, the guitarist for the band Spinal Tap tries to solve the same dilemma when pondering the cover of the group's new "Black Album." He asks, "It's like, how much more black could this be? And the answer is none. None more black."

I jest of course. I am sleep-deprived. Have I mentioned that?

Last night during my two hours of sleep I had a dream. I was driving through the desert with a kitten in my lap. The kitten was lost and I had to find the owner somewhere in the desert. Police cars wailed and I stopped my car. I looked in the rearview mirror and saw Benicio del Toro approaching. He had really nice-fitting jeans.

I rolled down the window and he spoke slowly: "Nooooooo. You may not be driving ('dry-wing') con eso gato de Tijuanaaaaa . . ."

I was intimidated. Benicio del Toro exudes a manliness I cannot match even when I shower.

Finally a friend showed up and told me, "No, Ale! Have paw prints taken! All cats have their paw prints recorded when they are born. Match the prints to the owner and you can deliver the kitten home!"

I don't know what any of this means. I am sleep-deprived. (Did I mention that?)

And, yes, I do have someone driving me today.

Tuesday, April 27, 2010

Enjoy Your Trip?

Two more days until the ?st MRI (I've lost count) and my first EEG.

"What should I expect?" I asked my friend with Epilepsy.

"Whatever you do," she said, "try to make your brain shocks happen during the thirty minute EEG. If you don't, they'll keep scheduling longer and longer EEG sessions until they can measure what you're talking about."

"What, like thirty minutes, an hour, two hours?" I asked.

She said, "I had to do a week-long EEG before they caught one of my seizures. A week. You're wandering around, apologizing to the nurses. 'Sorry it hasn't happened yet.' Just try to make it happen on the first EEG."

[Idea for television show: "Seizures! Caught on tape!" (If they can make an awesome show about crab fishing this should be no problem.)

My left leg issue has come back a few times, briefly. It doesn't respond, but then it does a second later. Weird.

Perhaps I have been losing some of my coordination, too. I have had the past two days off and—of course—I have blown all my free time looking for morel mushrooms in the woods. On Sunday I was lost deep in the woods (as usual) and, going down a ravine to case a strain of ash trees, I didn't see a root protruding through the dead leaves. My left leg caught it and my right leg could not prevent a fall. My body swung to the ground faster than I could react and my head hit the dirt in a way that scared me. I was probably more shocked than anything but it felt like my brain sloshed around inside my skull during the impact. I limped back to the car and drove straight home. I remember stories about skiers hitting their heads and getting symptoms hours later. I wanted to be home where MJ could drive me, not stuck in the woods trying to describe my location to her. ("Honey? I'm feeling woozy. There are trees around me. Know where that is? Wait, there's a squirrel too!")

I felt better later on. Yesterday, I went mushroom hunting again, checking a different spot. Everything is too dry, not enough rain. I found one morel, though. I cut it open but discovered it was a so-called "false" morel, meaning it was poisonous. Bad luck. Some time later I tripped AGAIN but saved my head from another serious impact. This time I arranged myself by a tree and caught my breath. It was quiet being so deep in the woods like that. I love solitude. Probably miles from the nearest person. I lay back and looked up at the foliage. Spring. The air was moist, flowers burst open, animals skittered along the bark of trees. Everything felt so thick with life. No wonder birds sing.

The gunshots in the distance told me it was time to drive home. That I was wearing camouflage didn't help my predicament. Back at home I walked down the steps outside and somehow lost my footing AGAIN. I braced myself properly but scraped a big chunk of skin off my right knee. My right shin is bruised, my right ankle is sprained, my right thumb feels sprained and my left hand has a small gash out of it.

Sometimes it feels like my body is part of a movie, but individual frames are dropped from this movie. When I play the oboe, there have been moments where my right arm just "drops" for a split-second. I recover quickly, but I know something strange has just happened. Perhaps this is happening more now, where I lose control of fingers, arms or legs for just a moment.

When I was a child, my father would always say, "Whoops! Did you enjoy your trip?" I thought that was pretty funny, and it's good to laugh about anything you are able to.

Wednesday, April 21, 2010

Color Me Stupid

The neuro-ophthalmologist instructed me to cover one eye as he opened a book filled with colored dots.

“Tell me what you see,” he said.

“A horse,” I replied.

He sighed. “It’s a number. Try harder.”

I squinted at the page that looked like a squished-up Damien Hirst dot painting. I could see the individual dots were different colors, but while zooming out nothing distinct emerged.

“Unicorn?” I asked.

“No, it’s the number twenty-nine. See? There’s a two here and a nine next to it.”

I couldn’t see it at all. We flipped through the rest of the pages and all I could see were bunches of colored dots and the occasional farm animal.

It’s official: I am color-blind.

I have known this all my life but never thought of it as a disability. Briefly, when I trained for my pilot license, it became a problem. Colors are important during night flying so I was prohibited from flying in the dark. Also, most airports use colored lights at runway thresholds to help pilots make a proper approach. At certain times of day the colors all looked the same to me which prompted my exasperated instructor to say, “Well can you at least see the runway? The paved strip thingy? Just land on that.” I did. The runway at Grand Rapids is two miles long. Landing a small plane on it is like throwing a wet towel down a hallway and hoping you hit the floor.

Besides my doomed affair with flying, the “problem” with color-blindness is two-fold. 1) It is an aesthetic disadvantage. Autumn does not look as pretty to me as it does to everyone else. To me, pretty is spring. Large trees with flowers all the same color. I love big expanses of solid colors. An artist like Barnett Newman is very comforting to me.  Mixed colors confuse me and make me think. 2) Every time I tell someone I am color-blind they grab their shirt and ask, “What color is this?” They think “color-blind” means I see random colors. “Your shirt is electric pink,” I say. “Really?” they respond. “That would be so cool to be color-blind. You’d never have to adjust your TV.”

I can see traffic lights just fine, but even that has put me in trouble. Once, during another doomed affair, I was urged to “Make this light!” I gunned it and sped through as the light turned red. Police sirens wailed a moment later and I pulled over. “License and registration,” the officer said. As he studied my papers I heard the voice next to me say, “It’s okay, officer. He’s color-blind.” “What?” A flashlight was in my face. “I can see!” I said. “I am color-blind. But I can see the traffic light!” She added, “That’s right, officer, he can tell by the position of the light: up, middle, or down.  Other than that he's blind as a bat.” I said, “No! I can see fine!  I can see individual colors!!” The officer said, “But you’re color-blind.” “Yes, I know! But traffic lights are fine!” He handed back my license and registration. “Don’t do it again,” he said.

I haven’t.

Saturday, April 17, 2010

Mister Atomic

The past week has been good. My mysterious left leg phenomenon vanished almost as soon as I posted the previous blog. I noticed it in the car once or twice more, but other than that it’s been fine. I walked like Igor for a while. Not the Stravinsky one but the Frankenstein one.

The pitch change relating to light coming in my left eye I have confirmed over and over. At a certain time of day when the ringing is incessant I can manipulate the pitch by controlling light. I have a timely appointment Monday morning with my neuro-ophthalmologist and I will have plenty of questions.

The electric detonations in my head continue, though they are less intense due to the new medication. This week our orchestra is playing the "Doctor Atomic Symphony" by American composer John Adams. During performances I can't help but imagine miniature Los Alamos experiments inside my head every time one of my jolts occur.

The new prescription (Trileptal) instructs me to take the pills “twice a day” and I have worked out a way to take one pill before my brain shocks begin and another pill right after. This means taking the two pills as close as thirty minutes apart, but it is still technically “twice a day.” In any event, it does something to help during the worst part of my day. The shocks are better. But only a little.

Yesterday I ran into a friend and updated her on my condition.

“Wait,” she said. “In addition to the tumor you’re developing Epilepsy?”

I replied, “Maybe yes, maybe no. At least the medication is for that. A disproportionate percentage of craniopharyngioma patients develop Epilepsy.”

“I have Epilepsy,” she said.

“What?” (Why am I not notified of these things? I have known this person for years.) “You?” I asked.

“Yes. Since I was nineteen. Doctors didn’t know what it was.”

“Aren’t there, like, sixty different kinds? What kind do you have? I have light flashes in my left eye. I call them my electric butterflies. Do you have light flickers?”

“No,” she replied. “Mine are like auras rising up from inside me that occasionally lead to seizures.” She gave me the technical name. “Until I was diagnosed I didn’t know where to turn. I even tried exorcism.”

“Can you spin your head around? You could make a living just collecting bar bets.”

She was not amused, so I continued, “Anyway, it’s still early and there are so many different kinds. That’s if I have it at all.”

I thought of another little thing I have noticed recently and added, “I also have these slight arm or finger twitches.” I mimed a jerky motion with my left arm.

She nodded knowingly and donned a Welcome-To-The-Club look on her face. “Aha. So you're a lefty."

Monday, April 12, 2010

The Light

I discovered something odd about me yesterday. (What else is new?) The ear ringing, now a constant issue, is affected by the light coming in my left eye. Let me explain.

Yesterday MJ and I were trying to enjoy our last day off. My brain shocks were detonating as usual. My head buzzed with ringing ears. I checked my vision by closing one eye, then the other (something I do regularly). The vision is holding up fine, but I noticed something else: the pitch of the ear ringing did an upward half-step glissando every time I closed my left eye. I did this many times to confirm.

"Maybe the facial muscles alter something in your inner ear and this causes the pitch to change," MJ said.

We had paused the TV—The Masters, mind you—and this meant there was something serious to discuss.

I replied, "Maybe, but let me try something." I kept my face completely still. Using the most minimum energy I could, I closed my left eye and then opened it.

The same pitch change happened with the ear ringing. I tried several more times and it was always the same.

"It still could be just a tiny facial muscle," MJ said.

"I'll try something else," I said. Now, I did not move my face at all. Keeping completely still, I moved my hand over my left eye, blocking the light. SAME PITCH CHANGE. The same half-step glissando, up when the light was blocked, down when the light came back in. I moved my hand on and off my eye quickly. DO-RE-DO-RE-DO-RE-DO.

It was the light.

Later, during the sunset, the light flashing into my left eye disrupted something deep in my head. I simply could not take the light and I wished I had my eyepatch with me. I sat with my hand over my left eye.

This morning, there is now something funky with my left knee. Something in the joint, as if I can't make it do what I want. Stairs are difficult but not impossible. Just slow.

"Move, leg!" I implore. A second later, my left leg obeys. It's just a strange delay where my body won't quite do what I want it to. Something is starting to happen, but I don't know what it is.

Thursday, April 8, 2010


In a week I will have my next appointment in the neuroscience wing. In the meantime (this is a vacation week with the orchestra) we are keeping the stress level down by catching up on episodes of the TV show “24”. We just saw one where Jack Bauer (the protagonist) hung from the ceiling with bound wrists while the Russian mafia attached live jumper cables to his wounds.

“There,” I said to MJ. “That’s what it feels like, only on my brain.”

Noah noticed my voice and tipped his head to see if I had a treat. I didn’t, so he slumped back, groaned and watched the screen as Jack Bauer took more juice.

I was exaggerating, but only a bit. The new medication (Trileptal) doesn’t help (at least at the current dosage), but I am supposed to continue it until the next appointment. I don't know yet whether this is some form of epilepsy, but I have recently read that over 5% of craniopharyngioma patients (in one study) are later diagnosed with epilepsy. This is much higher than the national average.

I still experience the brain shocks—I now call them "shockras"—but I try to avoid situations where they occur. This means I never rest during the day, not even for a moment. And by “rest” I mean the moment I relax my thoughts, stopping to consider something beautiful, stopping to “smell the roses” if you will, stopping to think how something reminds me of the time when … KZZAAAAAPPP!

Like that.

As a result, I am sleep-deprived, probably more susceptible to interrogation than if I were drugged with Sodium Pentothal. I would reveal everything. Bank account numbers. Phone numbers. Safe combinations. The location of the rebel base. I’ll talk, but just STOP THE SHOCKS!

Again, I exaggerate, but only a bit. I do not suffer 24 hours a day. I suffer for one second, anywhere from three to fifteen times a day. And then I’m not suffering.

Imagine someone holding a sharp object over your hand. There is no pain yet, but you know at some point during the day that person will stab you with the sharp object quickly. Then—just as quickly—the pain will disappear.

So what do you do in this predicament? Yes, you see the right doctors and try different medications. But, besides that, what do you do? You go about your day.

Wake up. Nothing.
MJ makes breakfast. Mmm, good coffee. Good eggs. Good toast. Nothing.
Go for a walk outside. Cool spring air. Beautiful. Nothing.
Compose a little, write a little, check your email. Nothing.
Lunch? Sounds good. Good soup, mmm. Nothing.
Phone call. Nothing.
Errand. Nothing.
Dog walk. Nothing.
Fold laundry. Nothing.
Book. Nothing.

Like that.

I can’t wait to see what the EEG will show. If it records one of these shocks it might break the machine. 

Tuesday, March 30, 2010

Neurologist Appointment #1

“Undress down to your undies and put the gown on,” the nurse instructed me. I was in the neuroscience wing, about to see a general neurologist who works a few doors down from my neuro-ophthalmologist. She left the room. I undressed as instructed but chose to leave my socks on. I was cold. I also left on my “hospital socks”, which are the length of my entire leg. I wear them frequently to prevent swelling when I am on my feet a lot. They are made of white material and MJ refers to them as my “Little Lord Fauntleroy socks.” This is funny because I weigh 230 pounds.

I slipped into the gown. I reached in back but could not tie it because a few days ago I separated my right shoulder. When it rains, it pours. Later it popped back into place, but there is still a searing pain if I reach with my arm. I can hold my oboe but I can’t lift higher than my chest. Despite the pain I am literally leaving it for another day because there are just too many things on my plate right now. The problem for this day is the electric jolts in my head.

I had everything prepared – two pages of typed notes detailing my entire history, current medications, and two paragraphs detailing every aspect of my current symptoms, explaining exactly how the shocks seem to occur, how I feel I can minimize their severity by reverting to active rather than abstract thoughts, how bright lights and flashing lights seem to trigger them, and how the worst shocks occur just as I drift into a moment of repose during the middle of the day.

“Fill out the form and describe your symptoms,” the nurse also had told me. She handed me a clipboard with eight pages of questions. As best as I could, I transcribed everything by hand onto the form as she took my blood pressure. I filled in my name, address, date of birth, sex, primary care physician, address and phone number of my primary care physician, current medications (seven different ones, listing all dosages and frequencies), previous surgeries, etc.. It also asked for the addresses of the surgeons who performed not only my brain surgeries but also both my hernia repair surgeries in 2000 and 2005 and my left knee arthroscopic surgery in 1999. I fumbled for my iPhone, searching for this information to transcribe onto the form. I found most of it and scribbled it in as rapidly as I could.

As I turned over the fourth of seven pages (and with my hand cramping up) a question now asked why I was here today. I began writing “brain shocks” when the nurse took the clipboard back from me and said the doctor would finish writing the form with me during the appointment. I never saw the form again.

As I sat on the padded table (having improvised a one-handed knot on the hospital gown) the door swung open and the neurologist walked in. Finally, just me and a neurologist. He looked young, possibly a little cocky, but he exuded intelligence. We exchanged pleasantries, and when he found out I played in the symphony he proceeded to give me a run-down of the best and worst concerts of the past season.

He asked me questions about my medications, about my life, and about how well I can focus.

I found myself talking about my thinking patterns in ways I have never discussed before. I said, “Well, things repeat in my head a lot. It can be the sound of someone’s voice, a musical phrase, a taste, a moment on film. It keeps repeating and repeating until something else takes its place.”

“Do you have OCD?” he asked. “Obsessive Compulsive Disorder? Been diagnosed with that? Anything like that?”

“Never thought of it that way, because I don’t think of it as a problem,” I said. “From an early age I knew I had a compulsive streak. And I knew it would never go away. So I learned how to channel it so I can focus. You can let a compulsive streak ruin you, or you can use it as a tool for something like intense concentration for writing or composing. I think it ties into my memory. I can play an entire symphony from memory the week we are rehearsing because it plays endlessly in my head, over and over, day and night, until the performances happen. And then the next thing takes its place. I always tell people I have a ‘tape loop’ in my head. As long as I keep channeling good things onto the tape—great music, beautiful words, an interesting image, a Chateauneuf-du-Pape, a morel mushroom fried in butter—I’m fine.”

He scratched “OCD?” into his notes.

“So what about your current symptoms?” he asked.

I replied at length. I talked for at least five minutes, going into every detail about the shocks in my brain. I finished with, “I realize the Internet is filled with faulty information, but—in desperation—I’ve been searching for answers. The only thing I have found relates to people going through withdrawal from drugs like Ecstasy, and that’s definitely not me.”

He sat back and studied me for a minute. “I’ll be honest with you. I don’t know what you have. Do you experience the shocks as little clusters? Five or six at a time?”

“No. It’s always a singular event. One massive shock, assuming I couldn’t see it coming. The next one happens anywhere from ninety seconds to fourteen minutes later. I time them.”

“Are they happening now?”

“No.” I looked at the clock. “But this is prime time for them. They might start soon.”

He said, “There’s a very rare disorder called ‘Exploding Head Syndrome.’”

“Like in ‘Scanners’?”

I think I got a smile. He continued, “But that is during the first phase of sleep, and it’s a loud noise that wakes you up.”

“I don’t hear a loud noise. It’s an electric jolt, very painful, as I transition to more of a dreamy state.”

“I want to look at your MRI again,” he said. He went out of the room.

Almost as soon as the door closed, I felt it. The ear ringing increased and a high pitch vibrated along the top of my scalp. I thought, ‘If I close my eyes and drift off for a moment, thinking of how tiiiiiiiirrrrrrred I am.’ Nothing. I thought of the Wicked Witch telling me: “Sleep, sleep.” I thought of the poppy fields. I was drifting away . . .


I jolted up. It happened. Just as I knew it would.

He came back in the room.

I told him, “It’s happening right now. I just let one happen.” And, again, I explained the phenomenon.

He thought for a moment. “I want to try something.” He dimmed the lights. He pulled a light from his pocket and pointed the light at the door behind him. “Look over there,” he instructed.

I did. I heard the buzzing along the top of my head intensify.

He shone the light directly into my left eye, holding it there for several seconds. Doctors do this all the time and nothing ever happens.

Yet this time it was different. I felt as if suddenly I was falling into the light, my head shrinking until it fit inside the lit tip of his pen. Inside, it was like traveling through a wormhole faster and faster, screaming through outer space at light speed. The electrical impulse detonated in my head. I sucked the air out of the room and threw myself back onto the table.

I shook it off and looked at the neurologist. He gave me a knowing nod of his head in return. Without a word he ran through the rest of a basic neurological exam, checking reflexes and responses. When he was done he sat and wrote.

He said, “I want you to try something first. I have to be careful about saying what I think you are experiencing, because once I say the word it sets off alarms.”

“Does it rhyme with ‘leisure?’”

He ignored that and said, “First I want you to try a small dose of a new medication and see if it helps at all.”

I had never heard of the medication before.

He continued, “I also want you to get an EEG and another MRI.”

“I just had an MRI. Less than a month ago right here.”

He shook his head. “I know, I know. The MRI they did scanned only for your tumor. They usually do everything, but for some reason they skipped the “T2 Flair." That’s the part I really need to see.

I exhaled. “Okay.”

"So get started on the medicine and in a few days you will be contacted about setting up another MRI and an EEG.  In a few weeks you'll be back here seeing the neuro-ophthalmologist, and he will build on what we've begun today.  We won't jump to conclusions, but do take the medicine to see if it helps in any way."

A nurse took a blood sample from me and escorted me out.  In the parking garage, I checked my messages and then typed the name of the drug into the Google search engine on my iPhone.  As the page loaded on the screen, I saw the same word repeated across all the entries: EPILEPSY.