Husband Amused

More Brain Shocks

2012-02-17T08:55:00.000-05:00

My brain shocks are back. Last night I had about three small ones, and the night before I had two medium jolts (about a 6 on a scale of 1 to 10, representing the range I know). They are more unsettling than they are painful. It feels like something terrible is about to happen but it stops just short of that. It's like AAARRGH ... don't ... move ... don't ... move ... and then it goes away.

My dizziness is about the same, and it comes and goes. This week my orchestra is playing the live soundtrack to showings of the final "Lord of the Rings" movie, so I continue to sort out my headaches, brain shocks and dizziness to the sound effects of orc slaughter on the enormous screen overhead.

In my craniopharyngioma support group I have now met others who have these symptoms, along with my "tingly" scalp. With much interest, I have met an adult who experiences not only brain shocks but a variation of the "complex auditory auras" that plagued me in the summer of 2010. For those who have not read this before, here it is. I used to "hear" music playing right in the room with me when there was no music playing. This other "cranio" (as we call one another) "hears" her cell phone ring many minutes later, again, after it rings the first time, like a delayed echo.

To be clear, when I write "hear" it is not the same as when you get a song stuck in your head. I mean "hear" in a literal sense. You hear things exactly as you would if it were real. You don't answer the phone the first time, and when it rings again you reach for it only to discover it has not rung the second time at all. You were only "hearing" it the second time. An auditory aura.

I bet in 100 years these symptoms will be explained (or cured) but for now we are an odd bunch, experiencing strange side effects and trying to put them into words.

A First Time for Everything

2012-02-06T09:06:00.000-05:00

I must have slept at least fourteen out of the past eighteen hours. I am still dizzy as I wake up, now for the fifth day in a row. I will be on the phone today with my endocrinologist, maybe going in for tests. In the meantime, here is an old memory I have been working on for a while about another dizzy time in my life, almost thirty years ago:

After I finished eighth grade in 1982, I spent the next three summers in northern Michigan studying oboe at the National Music Camp, Interlochen. I had yet to know music was my true calling and I thought of Interlochen as a fun diversion. It was my first time away from my parents. There is a first time for everything.

I did not have a girlfriend but I knew what one was. During the regular school year I attended Cranbrook, a private all-boys school. Girl sightings were rare. The campus of Kingswood, our sister school, was adjacent to us, but the only times we saw actual females were band practice and school dances.

During the first week at Interlochen a violinist my age brushed past me. She was so close I could smell her. I was seated, polishing my oboe clean. As she passed, she dragged her index finger across my knee. She whispered, "I think you're the most talented one here." She turned her head, batted her eyelashes twice more and swiveled the rest of the way to her chair.

I thought she liked me.

Her name was Darlene. She was willowy, freckled, strawberry blonde with a boyish cut, and her smile radiated a natural happiness. She was pretty. She was from Texas and she spoke with a comfortable drawl. She was the kind of girl I imagined spent free time amongst sunny haystacks, chewing sweet ends of long grasses and tying her plaid shirt into knots.

At the end of that rehearsal, I watched her pack up and wander to the corner of the stage. She pointed at me and curled her finger in a beckoning fashion.

I decided to follow her.

She took my hand and led me to the back of the building, shaded by fir trees. She positioned me with my back to the concrete wall. Suddenly, I remembered the girl I had held hands with back home the day before leaving—the girl to whom I had, like a valiant knight, sworn to “wait for her” during the long, hot summer—but that would have to stay in a corner of my mind for now. There is a first time for everything, I thought, and this would be my first kiss. Darlene looked both directions. All clear. She lowered her eyelids to half-staff. Prrrrrooooowww! The air thickened while colors around me dimmed to a warm pink. As she closed in her face went fuzzy. I remember one thing.

Garlic.

Not her. Me. I had eaten a stack of garlic toast at the cafeteria and I had not brushed my teeth. I fought to keep my mouth closed but it didn't matter because she was a light kisser.

As quickly as we had started, Darlene stopped. She looked at her watch.

"Want to do something together?" she asked.

"Sure!" I said, still stung by the novelty I had a girlfriend. "The music library is open. We could listen to a whole symphony."

"We could also go to the Melody Freeze for ice cream." Prrrrrooooooww!

I decided I wanted to go to the Melody Freeze for ice cream.

Back at my cabin I lay on my cot, hands contentedly behind my head, daydreaming of Darlene and how she was perfect. I tipped my head off the top bunk to eavesdrop about another boy in my cabin. He was getting lucky with a girl, too. She also played the violin. She was also from Texas.

What a coincidence, I thought.

Every time I saw Darlene for the next week, she pulled me into side corridors, pulled me to the sides of buildings, pulled me behind trees so we could kiss for a few minutes. The other boy in my cabin played in a different orchestra. When his orchestra rehearsed, Darlene's hand slipped easily into mine and we walked in the open with her head leaning into my arm.

A week later our counselors scheduled a "co-rec" between my cabin and Darlene's cabin. I was excited but Darlene was nervous. When our cabins met by a fire to roast s'mores, Darlene barely moved or said anything. My cabin-mate with the girlfriend from Texas stayed close to me for some reason. Darlene never changed her expression all night from stiff and wide-eyed, like a frozen goat.

Later in the summer, when this doomed love triangle collapsed into its own web of lies, my cabin-mate and I compared stories, timelines and alibis from the previous weeks. "That co-rec," my friend said, digging into a bag of potato chips and offering me one, "was what Darlene called"—he did an impression of her drawly voice—"'Like, the most intense moment of my life so far.'"

Before things soured, Darlene and I attended a live concert featuring Ella Fitzgerald. Interlochen was (and still is) a goldmine for young music students to see famous guest artists up close. In the summers I attended, I heard Count Basie, Benny Goodman, Wynton Marsalis, the Cleveland Orchestra, Al Hirt, Pete Fountain and Dave Brubeck perform on the same stage we used every day.

Before we entered the open-air structure that was Kresge Auditorium, Darlene panicked for a moment when she saw someone behind me and—instead of going in—she pulled me behind a tree. "Let's stay outside and listen," she said. "Then we didn't need tickets," I said. "Don't worry about that," she replied. Prrrroooooww!

I decided we would stay outside.

On the lawn we held hands, kissed, danced and twirled about as only a couple of awkward adolescents could while Ella Fitzgerald's voice slipped out the sides of the auditorium and mixed with the leaves in the trees before disappearing into the night sky. In its own innocent way it was—and always will be—one of the most romantic nights of my life.

"Go get us some ice cream," she said when the concert was over.

"Okay."

I went to the Melody Freeze, ordered one vanilla cone with sprinkles for her and one vanilla-chocolate twist for me. I wended my way through the crowd back to the auditorium with ice cream dripping through my fingers in the warm night. She was not where I left her so I went looking.

Around a corner not far away I found her pinning my cabin-mate against the concrete wall.

They were kissing.

There have been a handful of moments in my life where I have felt my heart literally crush apart. This was the first, and there is a first time for everything. A moment later I felt no pain—no feeling at all, actually—and I walked to the nearest trashcan. I dropped both ice creams in, marched back to my cabin, climbed up to my cot, pulled the covers over my head and willed myself to sleep, the melted ice cream turning hard and sticky between my fingers.

The next day Darlene came. She said, "You didn't find me after the concert."

I had no reply.

"Come with me," she said. "Come on!"

I didn't feel anything, but I followed. She fell in step and slipped her hand into mine. I stiffened. I didn't want her touching me. I thought she was dirty.

She ducked into to a building rarely monitored by the counselors that was long and straight.

"Let's go downstairs," she said.

“We’re not allowed down there!”

“Just follow me.”

"What are we going to do?"

"Come quickly!"

I followed.

The downstairs was a long, empty cavern with numerous practice rooms running up and down either side. She took my hand and led me to the empty room in the far corner. She closed the door and faced me with a wicked grin that continued to widen with each passing moment.

Prrooooowwww!

I felt nothing.

Prrrroooooooowwwwwwww, rrrrrooooowwwowwwwwww!

Nothing.

"Oh come on," she said, coming to me. She kissed my cheek. Then she kissed me on the lips, slowly. I felt better and kissed her back.

"Eeeeuww!" she blurted and pushed me back. "Why would you do that to me?"

"What?"

"I know you saw us together last night! I know you saw us!"

"Saw what?" I asked.

"You saw us kissing!" she hissed.

"Who kissing?"

"Us!"

"Oh …"

"Oh that's right!" she blurted. "Why would you come on to me when you saw me kiss someone else?"

"I … I … I …"

"What kind of girl do you think I am? Some kind of slut? You jerk me around for your amusement?" She burst into a fountain of tears.

I couldn't believe I had caused this. I approached her.

"GET AWAY FROM ME!"

I backed off.

During the next hour, I endured what I could only have described back then as psychological torture. I slumped in a corner, eyes wet, while Darlene paced back and forth, turning the last word of my every sentence into a question. If I said, "I'm sorry, I thought—", Darlene would study me, glower and ask coolly, "Thought? Why would you think like that? Thought?" I would respond, "I don't know! I'm just trying to make … to understand …" Darlene: "Understand? Understand what?" She screwed up her face, turned her palms inward and stared at the ceiling. "What are you trying to understand?" Me: "This whole situation." Darlene, screaming: "What do you mean by this 'situation'? What kind of ‘situation’ are you talking about?"

When there was nothing else to say, the silence was thick and the room exuded a rotten, dead air. We both felt like when you pull the plug and let all the water drain from the bathtub.

"Well," she rasped, "I guess that's all there is to say." She was in the opposite corner, arms crossed and eyes wet with real tears.

She left.

At the end of camp, when I was interested in another girl (still keeping the girl at home in mind also, valiant knight e’er was I) there was one final evening where all students gathered in the plaza between the Melody Freeze and Kresge Auditorium. Time to say goodbye.

I sat on a bench with my new girlfriend—a brunette, I think—talking to her about football while she stared off somewhere. We hadn't done anything yet, but my plan was to hug her goodbye and to really milk that hug. Then I would get through the school year writing letters to her about football, stoking the embers of our mutual attraction until we could resume our relationship the next summer where my goal would be to hold her hand.

While we talked, I spotted Darlene a short way away chatting with a group of eager boys. She was the center of attention as always, looking so pretty, laughing and flashing her smile that never failed to radiate natural happiness.

I studied her techniques from afar. There was the "Moi?" look, where she dipped her chin, moved her head aft and pointed at her chest. This was followed by the "Oh-you're-joking" laugh and a playful slap on a boy's shoulder. There was the wide-eyed "No … WAY!" exclamation followed by the "you-just-blew-my-mind" moment of stasis with her mouth agape. During the summer she demonstrated an impressive array of powers as if she were a novice wizard honing newfound abilities.

I asked my new girlfriend, "Would you mind terribly if I asked you to wait for a moment?" (More accurately, I probably mumbled, "Hang on a sec.")

I walked to Darlene and caught her attention as she finished hugging one boy. She surprised me with an expression I had never seen before: Her face melted compassionately. She tilted her head and put her hand sweetly on my face. This seemed at once genuine and contrived. I imagined her Texas drawl to be something rather European and Nineteenth Century: "Oh dear, dearest one. How did we drift apart?" She hugged me, touched her hand to my face again, and went on to the next boy.

I returned to the bench and noticed my new girlfriend gripping the seat, almost crushing the wooden slats with her bare hands. She softly hissed one word, "Darlene,” before the first tentative touch of my own hand atop hers melted the sting from her grip.

Dizzy, Dizzy

2012-02-05T08:45:00.000-05:00

Hello, everyone. I wanted to write a quick update about the past few days because I am getting a lot of questions from those who have witnessed me. I don't have the fortitude to write one of my normal entries, so I'll list the facts.

The past three days I have been very dizzy. I feel fine if I am lying down or sitting still, but moving around or tilting side-to-side makes me lose all sense of orientation. I can hear fine, but I know I should get my ears checked for obvious reasons.

A likely culprit (hoping it has nothing to do with the tumor) is my diabetes insipidus. For the past week, I have had both morning concerts and evening rehearsals or concerts. This means I have needed to dovetail my desmopressin nasal spray (that prevents massive fluid loss). So I have missed out on the daily cleansing of "breakthrough urination."

In addition, when I could finally have breakthroughs on Friday and Saturday, I couldn't go. I had the overwhelming urge to urinate but nothing would come out, just a few agonizing drips at a time. I am sure my body's sodium and potassium levels are all mixed up as a result. I am thirsty, but then water repulses me a moment later. Grapefruit juice works best. I go as best as I can, then return to the couch and cover myself with an electric blanket because I am chilled. All day Friday and Saturday I was so tired, sleeping most of the day, resting for the concerts.

The other weird thing is my left leg which aches. Normally I feel my legs buzz when I have reached a full breakthrough (which is the cue to take my nasal spray) but I haven't felt that. There is a shooting pain (mild) that starts inside my left leg and runs up my left side to the middle of my back on my left side. I have tried the stretches, but that whole side of me is throbbing.

Most of all, it is the extreme dizziness. Despite this, though, I have been able to play concerts. (We were in the pit this week for Mozart's Magic Flute, and I suppose I came to work because I had less to worry about regarding appearances. If we were up on the stage I might have called in sick.) After last night's opera, MJ and I came home and, while walking in to see Noah, I thought, "I feel drunk." I had the coordination of a drunk, but with mental focus and alertness. It was so strange. My feet moved like sandbags and I bumped into doorways.

This morning, as I wake up, my ears ring as always, my left side still aches, but my dizziness has subsided a little after a good night's sleep, but it is still there. If I feel worse throughout the day I will call a doctor, and on Monday I will call my endocrinologist to report all this. My eyesight, best as I can tell, is fine.

Early Bog #11 (The Dream)

2012-02-02T06:04:00.000-05:00

One of my last blogs from two years ago before I switched to my own website here at Husband Amused. I have a feeling this may be correlated to the days my tumor began expanding again, but that is just a guess. This is kind of trippy:

FRIDAY, OCTOBER 16, 2009 9:25 AM, EDT

I woke at 4:30am, knew it was too early, then proceeded to have a very unusual morning unfold. I lay awake, trying to put more than one thought together at a time. This has been hard: multi-thinking. Since the surgery I can do one thing and then do another. But I can’t comprehend two things at once unless I write it on a list and do them sequentially: one, two, three, four, etc..

Why I like mornings, I guess. The clean slate. Every action is an unadorned etching you can take time with by itself until you do the next one. I used to enjoy this as a luxury, but right now it is a necessity. Noah pills. Noah outside. Noah inside. Paper.

This morning, trying to mull over several things at the same time, I fell into a deep dream. I was walking in a garden with flowering plants and trees. Vegetables grew too, everywhere. But the vegetables, when I approached them, were in fact words hanging off the plants. I picked them, pulled them apart, rearranged the letters, made sentences. I could hold them in front of me and they would stay in mid-air as I reached for another word to go with it.

In the distance, I heard the blip of musical notes, quick arpeggios. D minor, staccato, higher pitches. I went to hear where the notes came from and the sound emanated from another plant, a giant hot pepper plant larger than I had ever seen before. I jangled the peppers and they made the sound again, those beautiful arpeggios as they touched one another. I tried jangling others of a different size and they added new notes, new colors (G-sharp alternating with A) to the already twinkling sonorities of D minor.

Then I felt a bass note. A benevolent D-natural in the grass that vibrated the skin underneath my feet, one note held out forever, sustained by the vibrating blades of grass as the air passed gently between them.

Things turned dark. All color faded away. The sky dimmed and I looked up to the clouds. The sky turned into a movie screen and someone said, “This is a film reel with scenes of rockets exploding.” I watched the blurry gray images of the clouds, but I saw nothing in them. I was holding my oboe now, and my oboe, on its own, rose into the air. My arms were fully outstretched. My own grasp of it and bodily weight prevented the oboe from flying away. But by continuing to hang on, it pulled me into the sky. My oboe was the rocket, and I felt myself tear apart from my physical body with a violent SNAP! as I followed it upward.

I was in my bedroom now, having floated up to the ceiling, curled in the top far corner of the room, my arms clutching my oboe to keep me flying. It was an unusual sensation I have experienced a few times in my life, this out-of-body feeling that is so real. I was fully awake, looking down at my bed and I could see myself lying there. MJ was gently shaking me because I was shrieking with some kind of nightmare. It looked like frames of a movie were stuck for a second, then they jolted forward to the next second, then the next. Very angular and raw. Film jamming and tearing in the projector, spitting through violently. Something terrible was happening down there. MJ was horrified, screaming, and I wanted to get back. With an audible SNAP! I flew myself back inside my body.

I saw a flash of my surgery. Metal instruments. Knives. Metal probing deep inside my head. Male voices: “In?” “Yeah, good.” By God, it was real. A memory. I saw it. It was real.

I felt MJ’s hand rocking my shoulder, soothing me out of my nightmare. I stirred briefly but stayed asleep. I woke a few minutes later, still feeling MJ’s hand holding me. I breathed in and out.

I said, “Love you.”

I slept some more, dreaming of musical notes. Harmonies. Polyrhythms. I was composing.

When I woke, MJ was out of bed. I leaned up to see the time. In my glance at the digital clock I caught the exact moment it flicked from 7:59am to 8:00am.

Early Blogs #10 & #11 (You Gotta Go When You Gotta Go)

2012-01-30T06:08:00.000-05:00

Here are two more of my earliest blogs from two years ago, ten days after my first brain surgery:

THURSDAY, OCTOBER 15, 2009 7:09 AM, EDT

7:30am, Thursday morning. I’ve gone on a few tangents and it’s time for another funny hospital story. In a minute.

I woke up around 6am, and came downstairs. Even Noah, who usually skitters up to go outside the moment I wake, lay motionless in the front hall. He tipped his head briefly as I passed, as if to say, “Are you kidding me? Why so early?” He dropped his head back, groaned, but was up following me in a few minutes.

I opened the front door, retrieved the papers (NYT, WSJ) and there was also a package on the doorstep, a medium cardboard box chilled by the night air. It was a gift box from family, filled with favorite jams, grilling sauces and dried cherries from my favorite purveyor up north. (If you are family and reading this, this does NOT mean you have to send me something now. Seriously. Put away the credit card.) I got things SET for the morning, what I love about first things in the morning, so orderly. This morning I felt normal, not dizzy once.

Kettle on. Noah pills. Noah Kong. Noah outside. Noah inside. Noah banana. Noah rests. Open papers. WSJ to MJ’s spot, topped with NYT “Thursday Styles” section. Open NYT to Arts section. Cut out KenKen puzzle for MJ. Crossword folded precisely for me. Papers down, laptop open. Water boiling. Tea. Sit. Begin crossword. MJ’s footsteps upstairs. Perfect.

This morning my stitches come out from my spinal tap, so I’ll be leaving to see the surgeon in a few minutes. It makes me think about hospital life and things we take for granted at home. Simple things you can do yourself. I have a funny story to share about this, and I’ll finish and post it when I get back from my visit with the surgeon this morning.

THURSDAY, OCTOBER 15, 2009 6:49 PM, EDT

Back from getting my stitches out. (MJ drove me.) This includes my funny hospital story, but first this. It was nice going through town, seeing the leaves beginning to change colors. Since the tumor came out, my senses are heightened. I am color-blind (red-green) but I still “see” colors, especially when they are not too mixed up. Colors pop now, my eyesight sharp as ever. Ten days ago I was strapped to an operating table and pieces of metal were going inside my head. The turnaround is amazing.

My sense of smell is heightened too. It is so magnified I wonder if I ever had olfactory senses as good as this. Everything smells sweet. I’ll never know how long I had that golf ball of tissue hogging up space behind my sinus cavity. For years, perhaps, something had stood in the way between a nice aroma and my brain. I love a small glass of Vintage Port now after dinner, just smelling the nuances endlessly, hardly needing to sip it. When I was building my wine cellar I would on occasion buy a few bottles of good Ports as they became available in so-called “vintage” years. It seemed prudent; Port was out of favor, dirt-cheap, took forever to age (no danger of them going bad), and the experts raved about the quality. It was a no-brainer even though I wasn’t sure I liked them that much. But I accumulated a small collection over time, shrewdly, just in case, buying the very best bottles at just the right prices. Though in the past I have tasted great Ports with my wine friends, I have never until now appreciated them so much. In a way, like the peppers I grow, a great bottle of Vintage Port is yours; it will contain all the sensations of things you remember while the wine was aging along with you in the bottle.

My hearing is good too. No ringing anymore. As I write this, I can hear the strains of the “God Music” movement from George Crumb’s “Black Angels” string quartet MJ is rehearsing upstairs with colleagues. In this part of the piece, an ethereal cello solo floats quietly over bowed crystal glasses providing a celestial hum. I now realize this is the otherworldly sound I was unconsciously thinking of when I wrote the piece in memory of my mother for her memorial service. In my piece, “Memory Box,” MJ and I were stationed on opposite sides of the stage, each of us running our wet fingers atop crystal glasses as percussionists on stage played groups of sounds representing fleeting moments I remembered about her, the most I could come up with at the time.

I promised a funny hospital story, so here it is:

In the critical care unit, I was in bed. The entire time I was attached to wires and tubes, blood pressure cuffs, catheters. In the critical care unit, make no mistake: you are ATTACHED. It seemed a machine beeped every time I moved. They wanted me lying there like a corpse, best I could figure.

My constant urination, thankfully, was no problem. In fact, it was liberating to have a catheter. My tumor removal led to a lot of bodily fluid upheaval and they needed to keep precise track. Every hour a nurse came in, emptied my bag of urine and noted the amount as well as my spinal fluid level and how many glasses of liquid I had consumed. They made constant adjustments to the bags, my bed level, and a column manometer.

But the thing about a catheter is, while freeing, it takes away your sense of control. Urine simply drains away. You hear this whooshing sound every once in a while, but you never experience the variation of the (probably male) Cartesian moment where you declare, “I go, therefore I am.”

After a few days of this odd freedom, you remember there’s also a number two. Seriously, I had forgotten all about that part. In the beginning I ate sparingly, and it wasn’t until Thursday that I wondered what I might do about a bowel movement. Thursday morning (the third day) a lot of things changed: my sinus packing was removed. I could BREATHE. I was alive again. After a mid-afternoon Dilaudid nap I woke up famished. Ravenous, actually. I grabbed the phone and ordered cheese tortellini with Alfredo sauce and a cherry cheesecake. Friends were coming to see me in a few minutes and I needed energy. Still needing to lie horizontal, MJ fed me one small piece of the tortellini at a time. But halfway through the plate, I didn’t want anymore. Things were moving and shifting inside me. I asked for a bite of the cheesecake, thinking it might help. Nope.

I had to go right to the bathroom. But I was tethered up the wazoo to my bed. The nurse looked over my directions and said I was not allowed out of bed yet. She could bring a bedpan, and maybe I could squat? My friends were halfway up the elevator. She gave me the bedpan and I just vomited in it.

A little while later they unhooked me while my friends were still there. I tried for a while, but the moment was gone. They put me back in bed, shot me up with more drugs and I slept until I woke in time for shift change.

Shift change at the new hospital wing (where I was lucky to be) was always a model of professionalism. The outgoing nurse stands face-to-face with the incoming nurse, both with laptops sitting atop lecterns, as if ready to debate one another. Like co-pilots going over a pre-flight checklist, they methodically go over my case bit by bit. It was always a perfect handoff as far as I could tell. Notes were scribbled and erased on my bulletin board. Then I noticed a new space near the bottom, previously unfilled:

Goal: [Arrow up symbol]

When the shift change was complete, I spoke to my new nurses for the night (you always have two in critical care, I think). Primarily I would be dealing with Heather, a sweet ingénue. She reminded me of the character Pam from “The Office,” especially her voice, and she nodded her head understandingly at everything I said, sometimes before I had said anything.

And then I met my other nurse, Sylvester. He was a strong black man. He seemed—and pardon me for saying this—just like the kind of stock character inserted into a movie who served the sole purpose in the script of helping a white person get over self-esteem issues. Before any introductions, he spied the up-arrow written in the “Goal” line on my wall chart. He made his eyes into perfect circles and pointed straight at me.

“We gonna get you UP. First you SIT up for a while. Then we walk to the DOOR and back. Later we’ll walk INTO the hall. Later still we’ll walk all the way to the END of the hall and back. Okay?”

“Okay,” I said.

He disappeared and I resumed my chat with Heather. It came up that my job was to play oboe with the Grand Rapids Symphony.

“Oh my GOD!” she said. “I LOVED going to the symphony when I was a student.”

“The Student Passport Program?” I asked her.

“YES!” she said. “It was so GREAT! All my friends too.” She rattled off the selling points for me: “Student ID. Best available seat before curtain. Only five bucks!”

“And just who do you think came up with that brilliant idea?” I pointed at myself and cleared my throat triumphantly.

“No WAY!”

“Absolutely,” I said.

In fact, I was lying. I am a zealous believer in this program—I speak of it often—but I didn’t invent it. I lied because she was going to make judgment calls on my drugs all night and I wanted her under my control.

She also saw I had a crossword next to my bed.

“You can DO those?”

“I’ve done every New York Times and Wall Street Journal crossword since 2005,” I said. (This was true.)

“I’ve tried, but I have never finished even one. You can do the New York Times? Those are the hardest!”

“I can, but you can too,” I said. “Start with a Monday. Spend all week on it. Use Google. You’ll finish. But only do the Monday ones for a while. I know you’ll be able to do it.”

“Really? Me?”

“Of course,” I said.

“Wow.”

“Say, how am I doing on drugs right now?”

She looked at her screen. “Oh, uh ... you can have a Norco now. Two if you want. And”—her eyes scrolled down a bit more—“I guess as much Dilaudid injections as you want to fill in the cracks." She sort of shrugged. "That’s what it says. Need anything?”

“Mmm, I’ll start with a Norco. Then let's add little squirts of Dilaudid here and there to keep the rabbit holes open.”

“Okay.” She opened the safe, took a pill out of the foil casing and brought it to me with a new cup of water.

“Thanks.”

Sylvester came back, saw I was lying down, and left.

I thought for a while about the rapid changes in my body today and said to Heather, “You know, if I’m allowed out of bed, I’d really love to be in the bathroom by myself for 30 minutes. No pressure.”

I arranged myself on the side of the bed, ready for help standing up. Heather did all the clamping off of tubes and wires. Sylvester came into the room to escort me to the toilet. Heather's only job, apparently, was to trail behind me. Mind you, after three nights in bed, my gown was totally open in back, but I’m sure it was nothing new to anyone in that profession.

As Sylvester sat me over the porcelain, he arranged a mini table in front of me on which he placed a newspaper, a hand towel, and a puke bucket. He also hooked my hand to the emergency pull string.

"I'm all set," I said. "Thanks!"

"Water!" he said. "You'll need a COOL glass of ICE water at the right moment!" He disappeared, leaving the light on and the door to my bathroom wide open, out of my reach.

He didn't come back. I didn't know what to do. Five or ten minutes later, still trapped over the bowl, I spoke a soft, "Hello?" Then I said, "Hel-loooo?" more loudly.

I heard Heather's timid voice reply, "Yes?" (Was she sitting in the room the whole %@#!$%* time?)

"Uh, Sylvester went off to get me some ice water and I don't know where he went. Can you just pour me a glass of water from the tap, then CLOSE THE DOOR so I know I'll have total privacy for a while? For like a long, long while?"

"Oh, sure," she said. I heard the tap running in my room. Her hand reached inside. I grabbed the styrofoam cup. She clicked the door closed.

Peace. I began reading the New York Times. Anything would have sufficed, even the phone book. I relaxed. My own private space.

The door swung open. It was Sylvester. "I almost forgot your water, man! Here's your . . . hey! You got a water!"

"Yes," I said.

"You want me to take that one away and leave this one?"

"No, that's fine. Just leave them both. Everything is perfect. Perfect, perfect. Thank you."

He took a step back and seemed to assess my vulnerability for the first time. "Ohhhh, I see. Awright. I got you.” He leaned in conspiratorially. “Don't you worry. I got you covered. I'll be right OUT-SIDE. No intruders now, heh HEH! You have yourself some PRIVATE time here, heh HEH!"

I said, "Just a closed door. Just silence. Thank you so much." I smiled and closed my eyes in peace. I was so ready to go number two so naturally right then. I was almost ready.

Sylvester added, "You know, and don’t you worry about that catheter, about that tube hangin' all over the place. It may go this way and that, but don't you go feelin’ like you peein' all over the place. Heh HEH! It could wrap around your leg like some barbershop pole and make no difference!” He snickered once more—“Heh HEH!” and closed the door.

Now I had that to think about. The barbershop pole around my leg dripping urine. My strategy for number two has always been consciously to release number one first, then number two. In order, by my command. With the catheter, I had no way to will anything to be so.

I heard a whisper. "Hey Al . . . Al . . . AL!!" It was Sylvester from the other side of the door.

“Yes?”

“All clear. Just you and me. Do your thing. Nothin’ but time.”

It was never going to end. I finished the article in the New York Times, and, true to his word, there was nothing but a long, respectful silence from then on. But I never knew if I was alone. The only way to confirm this would be to whisper out the door, but that might strike up another conversation with Bagger Vance out there. I tried drinking the water. Nothing.

I was out of options. I stood up, tied my gown, took my newspaper, flushed the toilet, and pulled the emergency call string.

No response.

I used the handrail to guide me in my dizziness to the door. I opened it. It was dark and no one was on the other side. It was four feet of open floor space to my hospital bed. I steadied my hand on the wheeled IV pole, pressed it into the ground for stability, and took the few steps to get me to bed. I made it. A moment later, Heather came into the room.

“You made it back to bed!”

“Yes,” I said.

She rubbed one index finger over the other. “I’ll give you a symbolic bad, bad, mister!” she scolded. “You shouldn’t do that by yourself.”

“Okay.”

“Any luck?”

“No, not this time. But thanks for helping.”

She hooked up all my tubes again. “Ready for sleep?”

“Sure.”

She walked to the cabinet and opened the safe. She withdrew another Norco pill and a syringe filled with Dilaudid. The room was dark and I could see her glistening eyes pierce into me as she approached. She was no ingénue anymore, I can tell you. This was an adult woman, a professional, trained nurse with intent. As she traversed the darkness of the room I imagined hearing only the click-click-click of her heels as she approached. High heels. I drank down the pill. She injected my IV and soon I felt the cool liquid spread up my right arm. In a moment, the drug was in my brain and the walls melted while electric hydrangeas bloomed. I could have gone to the bathroom right then, perhaps, but I fell asleep.

Early Blog #9 (Spirit Animals)

2012-01-26T10:14:00.000-05:00

This is one more blog from two years ago, in the weeks after my first brain surgery:

WEDNESDAY, OCTOBER 14, 2009 9:50 AM, EDT

Wednesday morning, nine days after brain surgery. I woke up this morning around my usual time, just after 5am. I felt the need to get up, go downstairs, see to Noah, putter around, get a few things done. MJ was reading in bed and sensed me stirring.

“Stay,” she said. She clicked off her reading light and curled up next to me.

“Okay.”

She was right. As I lay flat on my back, awake, I felt new equilibriums shifting in my head, getting bearings as my mind floated thoughts in the eddies of the new spinal fluid in my head. I thought about things. She fell asleep under my arm and I lay awake for another hour, just thinking. It was nice. I needed time like this before jumping out of bed.

MJ is the guardian of my solitude, something I consider the most important thing in a marriage. Honesty and trust come before true love, actually, and these are all built on the foundation that one spouse will basically work to protect the other. It’s such a simple thing, but so many people get it wrong: the notion that you have the responsibility to watch over your spouse and that you can accept being watched over as well.

I have felt this kind of kinship with spirit animals too and WAIT! . . . if you are going to stop reading because I wrote that, please give me a chance.

At key times in my life I have experienced unbelievable moments with animals that appear to watch over me, completely out of a normal context. Something in the natural order of things puts unusual wild animals in my path at turning points in my life.

Growing up, we had a wood statue of Francis of Assisi, known as the patron saint of animals, inside our house. My mother talked to me about St. Francis often, about how much animals meant. The statue must have been about my height as a boy, maybe three or four feet tall. The wood was old, cracked, and much of the paint had chipped off. He stood indoors, palms facing up, and various wooden animals were attached to him. We were moving to different countries all the time, packing him up and unpacking him, and while living in Caracas I think one of the birds on his hand broke off so just a nail protruded up from his palm, making me think of stories I heard in school about Christ and crucifixion.

Living in Melbourne once when I was about seven or eight, my father took us on a day trip to Kangaroo Island. I sat on a log there, eating a piece of bread, thinking about an instrument I had just taken up a few days ago — the oboe. I liked playing it but thought it might have been a mistake because it sounded so terrible. I only knew three notes (G, A, and B, the left hand notes) and the low G squawked every time I tried it. I knew special arrangements had been made with the school to get this oboe for me and, even at that young age, I felt shouldered with a responsibility not to give up right away and see things through for a while.

Wild kangaroos approached me. They wanted the bread in my hand. I waved it in front of them. Several more gathered around, including a young mother with a joey poking his head out of her pouch. I moved my hands back and forth the way I imagined a conductor would and all the kangaroo’s heads followed the bread. I thought it could be fun to be one of those kangaroos, to sway in unison, just following a piece of bread perfectly. I tore the bread into pieces and fed the kangaroos. Before leaving, one stopped, looked straight into me, and went away.

Unbeknownst to me, my father had been snapping photos of this. This picture of me conducting kangaroos at the moment I decided to become a musician has been published in newspapers, and I have it framed in my house. I don’t recognize the boy in the photo anymore, but I know it is me.

Other times, animals appear just as I make a change in the direction of my life. They arrive out of the blue, like punctuation marks, a reminder from the natural world that a certain decision has been made. When my first marriage was breaking up, I knew it was over when a fox curled up and spent the night on my front porch. It was Christmas morning, and I went outside to fetch the paper when the fox was just there. It startled me. The fox woke up, looked straight into me, then trotted away into the woods across the street.

I thought maybe the fox was sick, so I dialed the number for the local ASPCA.

“You saw a fox?” they asked.

“Yes.”

“You live next to woods?”

“Yeah.”

“Okay . . .”

I said, “It was curled up, sleeping on my doorstep. Maybe it needs something. Tuna fish?”

“The fox is not there anymore?”

“No.”

The person answering the phone was not happy. She said, “I’ll make a note you saw a fox.”

“Okay,” I said, then hung up. It was another sign. The way the fox looked straight into me before leaving was the same as the kangaroo. It said (to me), “You’ve thought about this long enough. You know what you’ve got to do.”

Another time more recently, a few months after my mother died, I was driving home from the airport after my first solo flight in an airplane. Aviation was a fantastic new passion of mine, a way to believe in myself again, and I was on such a high. I flew a plane by myself! As I turned the corner to come the final mile to my house, a fox ran across the road in front of the car, and I had to hit the brakes. The fox stopped in the middle of the road, looked straight into me, and continued on. I had not seen a fox anywhere since that time ten years earlier.

Even more recently than that, this past Christmas MJ and I spent a quiet few days at our cottage on the lake. It is so cold and desolate up there in the winter, such a wonderful place to be alone with your thoughts. This might have been the first few normal mornings where we were alone, taking in the serenity around us. I thought about things, about turning points in my life, and what things would be like going forward now.

Running across the ice out the window I spied a pair of coyotes, so common in the area you hear them howl at night. I heard them all the time but had yet to see one. I checked the cottage security webcams for an instant replay, but the image was grainy. A few more times, this pair of coyotes ran by, about every half-hour or so, but they were too far away to get a good look. Finally, I sat in a chair looking out the window with a pair of binoculars. On their next pass, I focused on a face. At this moment it stopped running and looked straight into my lens. Now I could see vividly: the red fur and pointed ears standing out against the bright white of the ice. This was no coyote.

It was a fox. Actually, it was two foxes now. They stopped, looked directly at me, and left. I have not seen any since.

It hasn’t always been foxes. After my recent series of eight MRIs, which took almost four hours in the middle of the night, I drove home, my body sore from lying motionless that long. Driving through the suburbs of East Grand Rapids in the still of the night, my headlights shone upon a white flicker bobbing in the road in front of me. A tail? I came up to it fast and I had to hit the brakes.

It was a doe, a beautiful one. In East Grand Rapids, no less. As my car came to a complete halt, the doe stopped, looked straight at me, and walked casually into someone’s yard, miles and miles from any woods it could call home. It looked into me again, with kindness I felt. Before the MRI results came back a few hours later, I already knew I had a brain tumor. I just knew it right then.

Finally, at the beginning of this past summer, I had decided to stop writing a piece of music I could not finish. It was my first major commission outside of my home orchestra, and (perhaps already suffering from this tumor squishing my pituitary gland down to nothing) I could not go on with it anymore. I wasn’t a composer, and maybe I never was one.

I was at our cottage with MJ, sitting on the porch with a glass of wine. I said, “I’m going to write that email. I’m done. I don’t know what’s wrong with me, but I can’t put the big pieces together. My head just doesn’t work like that anymore.”

She knew this had been torturing me for months, and she was more relieved than me to finally hear these words.

“Okay,” she said sweetly. She patted my knee and went inside. As the screen door swung shut, I sat alone outside with the finality of not being a composer ever again. I stared at the sky.

A bald eagle flew over my head, one with full adult plumage. Bright white head, long white tail feathers. Beautiful. It flew so close I felt I could touch it if I reached high enough. There is a family of bald eagles that live nearby, and the adults and the three juveniles often patrol the area. So I had seen them before, but never an adult so close like this, just for me.

It did not look at me the way my other spirit animals have done. I thought it might be somewhat pissed off, actually, the way it flew so close without taking the slightest notice of me. When I get that special look—from foxes, kangaroos, or does—I know my intuition is right. But this eagle simply soared straight over me. It was protecting me in my space, telling me to stay in a holding pattern for just one more day. So I didn’t send the email I had already composed in my head.

The next evening, MJ and I sat on our deck again with a glass of wine. I still hadn’t composed anything new, but I was thinking about things in a different light.

Out of the blue, I said, “You know, I have hundreds of pages of notes. So many ideas I simply can’t throw away. I still have time. Maybe it won’t be the best piece ever written, but I’m going man up and get it done.” I didn’t know exactly how this was going to happen, but I felt a seed inside me that never lets me down. Even, in retrospect, if I already had a large tumor causing trouble in there by this point, I knew this piece was as good as finished, with only a few months of scribbling in front of me.

“I like that,” MJ said. “I like that answer a lot. Good for you!”

She patted my knee and went inside to check on dinner.

I waited for the eagle to come by again, this time looking into me, telling me something like, “Told you so,” but it never did come back.

Early Blog #8 (Peppers)

2012-01-17T06:48:00.000-05:00

Here's another early blog of mine from over two years ago:

TUESDAY, OCTOBER 13, 2009 7:00 PM, EDT

Tuesday afternoon. Until this moment, I have been supervised since my surgery. I feel fine as long as I stay horizontal, and even though I should probably be with someone around the clock for the next few weeks I had no problem sending MJ off to rehearse downtown. My post-op instructions actually encourage me to make reasonable attempts to try a few normal things from time to time, as long as I can easily get back to a couch.

Plus, I know how to dial 911.

She kissed me goodbye a few hours ago and said, “Stay put, right?”

“Right. I’m on the couch. Got my book, and thank you notes to send.”

“All right.”

When I heard the garage door close, Noah began whimpering. His dinnertime was still an hour away, but I wondered if he needed to go outside. He didn’t. Maybe I needed to go outside.

I went out the back door into the cold air. A few feet away, our raised bed of pepper plants looked completely withered and pathetic, hit with a few nights of freezing temperatures so all the leaves now drooped lifelessly with a sickly dark green. The peppers underneath, however, were more robust and could withstand a few nights of cold before they too begin would begin to rot. Peppers are my favorite vegetable to grow (you plant them once and leave them unattended for months) and I did not want to let a year’s crop get away from us because of some dumb brain surgery.

Before my operation, I planned on harvesting all of them — maybe the day before as a kind of new-age spirit-building experience — but my stamina weakened so much I put it off indefinitely. As I inspected the dead plants now, I saw I still had a chance. A few peppers were gone, but so many were still good.

The raised bed is 4 feet wide by 8 feet long, with one large plant every square foot. 32 total plants, 8 different varieties. The benefit of growing them yourself (especially hot varieties) is you never need to buy them at the store, and you will be stocked all winter with as much as you need. Frozen hot peppers are so easy to pull out of the freezer, chop up, and throw into a pan with onions, garlic, or ginger, and that creates a base for most of the great, zippy recipes MJ uses to form the staple of our late dinners.

The hard part is keeping track of the hot ones versus the sweet ones. Every year I begin with a system marking the plants, knowing which long peppers are mild, better for salads, which do better adding zip to soups, which fry up better, which go better on my pizzas. It seems easy in the beginning, but by the time harvest rolls around they always end up in the same bin, looking so similar to one another. They are sorted instead by size and shape, mixed in together, put in Ziploc freezer bags, and then the rest of the winter MJ and I enjoy what is basically a pepper heat lottery.

A recipe of Mexican scallops she makes often with lime, cilantro, and peppers is sometimes pleasantly mild, and sometimes so bracingly hot it can be hard to swallow.

“I only put two of those little ones in!” she would say. “Last time I used six bigger ones and it still wasn’t enough.”

“It’s fine, it’s fine, I love it,” I always reply. And I mean it. I do love it both ways. I have a high tolerance for heat, and it is good for my blood pressure anyway. It’s fun. Food you grow for your own consumption is food for your soul.

As I inspected the 2009 crop, which had perhaps another few days before complete annihilation, I decided to harvest. I felt completely fine. I was rested and strong. In ten seconds I could be inside on the couch if I needed to be. To completely safeguard, I took the phone outside with me, made sure I saw the numerals 9-1-1 clearly, then took the shearers out of my pocket and clipped the first pepper plant at the base and turned it upside down. One by one, using this method, the peppers revealed themselves by popping away from the dead leaves draping around them. So many good peppers get lost in the shuffle if you don’t do it this way. In no time, I had filled two baskets and I brought them inside. I felt okay, then went out and filled another two baskets. A little dizzy this time coming in.

Now Noah was standing by the door, so I put him outside. I took the shearers out with me, clipped and harvested all but the last four plants, which were Thai pepper. Noah roamed the yard on his tether, not doing anything in particular, just wanting to enjoy the cool air. I was quite dizzy now, I realized. Time to stop.

I brought the peppers in, steadied myself, and went back out to see Noah. He was sitting, surveying his territory peacefully. The four Thai plants at the end of the raised bed still beckoned to me. They were large plants but yielded tiny peppers which are the most labor-intensive to separate, so I simply clipped them at the bases and brought them inside to deal with later.

It was now time for Noah’s dinner, so he came in and I fed him. As he chewed his rawhide dessert, I relaxed and lay down horizontally in my safe position. I dangled the Thai plants over my head, admiring the red and green slivers revealing themselves to me like lit ornaments on a dwarf holiday tree. I clipped the tiny peppers away one by one with scissors so they fell on my chest. It was not strenuous, just peaceful feeling those hot drops against my heart. Before long, everything was done: dead plants in one pile, and a few generous handfuls of tiny Thai peppers in another pile. I sat up, picked out the remaining dead leaves and put these potent little heat bombs in with the rest of the pepper harvest, sorting everything by size.

The hot ones and sweet ones are once again mixed together, so this winter will be another fun adventure with unpredictable pepper heat. I’ll make the same mistake in sorting them next year too. It’s one of the ways I enjoy my life.

Brief Candle

2012-01-13T14:36:00.000-05:00

Some things have been weighing heavily on me lately. I haven’t written because (for once) I don’t know quite how to address this topic. But it is growing inside me, taking me over, so in the spirit of my blog I must write it down.

Ever since my diagnosis, I have approached healing as a kind of extended improvisation, a lone player on a stage stringing phrases together as new challenges crop up. I have never met or spoken to another adult patient like me because we are so rare, a few hundred cases per year. Every once in a while I search the web for craniopharyngiomas, but mostly I am led to dry medical studies, not actual patients.

A few weeks ago, this changed. I joined a support group.

In the privacy of a closed group I can read about and communicate with others who have my same condition. As a “one-of-a-kind” patient before, I felt the freedom to make fun of myself as a way of coping. This allowed me to dive back into normal life. But when the tables are turned—when I read about someone else with the same condition—my heart crushes.

A thornier issue is that my support group gives me further insight into our bumpy lives ahead. I can peer into my future. I’ve been getting used to everything for just two years, but now I can talk with people who have lived with it much longer, saying things like, “Oh, I’m on my seventh brain surgery,” as if amassing surgeries were the same as collecting baseball cards. After a while, I suppose it gets to that point. You grow a tough outer shell. You get used to hospital stays every few years, all the needles and beeping machines. You make another notch on your belt and then wait for the next one. I’m not ready to go there with my thoughts yet, but now I see it around the corner.

When I saw the tributes for the children in my group who had “earned their wings” in the past month, I lost it. As I scrolled through the pictures—images I would never show MJ or anyone else—my first reaction was to want to trade places with them. I would, in that instant, have given my life so one of the other patients could have lived. But when I really think it through, I have to wonder if trading one patient for another makes much difference, or any sense. It’s apples for apples, and we all live through the same things, going at it our own ways, finding our own highs and lows along the timeline. I guess what I felt was a primal drive for brotherhood or sisterhood. I wanted to show compassion and solidarity. Then I wanted to feel it right back.

I know how serious things are with me, but I also know my condition is anything but hopeless. If anything, I’m the lucky one in my group wrestling with survivor’s guilt when so many others are saddled with obesity, blindness, heart conditions or adrenal crises. So far I have kept these side effects at bay while I improvise my part upon the healing stage, strutting and fretting with all my sound and fury, surely signifying something.

In Sickness and ...

2012-01-03T04:47:00.000-05:00

Oh my God. I am enduring one of those horrible nights again. Writing at 3:52am is my last resort because I can't do anything else. I can't lie down and stay still. I have no energy to wake up. My body is chilled and sweating at the same time. The light of my laptop soothes me.

I made a pot of green tea at 3:52am because it sounded good. Hot liquid going down my throat feels nice. I don't know why I want green tea. Every once in a while a loose strand gets in my teeth. I chew on it and swallow. It feels like a blade of grass in the springtime. The green bitterness gives me life somehow.

I continue to bat 1.000 for getting majorly sick upon returning home from any trip away from home since my brain surgeries. I have not gotten sick during trips, only when I get back. It's like I am in survival mode on the road, tapping my reserves (and looking normal), but when I walk in my front door everything releases. My body turns on me and punishes me for putting it through those tests. A year ago I had pneumonia after coming home from a few days on the road. After Cabrillo last August my body completely shut down for several days.

Two days ago, after returning home from the Christmas and New Year's break, I felt the slight hint I could be getting sick. The trick with hormone replacement therapy is to switch to a "stress dose" when you sense this happening. I did this, but yet here I am. On the plane ride home, everyone coughed. The seats felt dirty, I was tired. The terminal at Newark had pigeons wandering about. Pigeons.

I know how this happened. It's the Diabetes Insipidus (DI). Managing a correct "breakthrough" every day is taxing, both mentally and physically, but it is critical to my health. To do it right I need several hours where I manage the breakthrough on my own. My DI is extreme, and when I sense it coming on I keep drinking water to stay hydrated while I make repeated trips to the bathroom, about every ten minutes. My thirst catches up with me and then I can only drink ice water. After that, water itself repulses me and I switch to icy club soda with either a splash of citrus or cranberry juice. The acid and the bubbles are the only thing to simulate thirst quenching for me as I continue to make trips to the bathroom.

Finally, after a few hours, I know the breakthrough has reached its peak. I know this because my legs buzz. There is a tingling sensation in my legs, a whooshing upwards just as I urinate one more time in the bathroom. A doctor has suggested this is me sensing my lymph nodes draining. That sounds weird to me. Anyway, my legs buzz, and when they do I hit the nasal spray which stops everything at once. But if I hit the nasal spray too soon ... it's 18-24 hours until I the next breakthrough. Anything I wanted to flush from my body will be stuck in there for another day.

That final draining—waiting for the legs to buzz—is something I just sense as the right thing to do, to stretch out the breakthrough that long. When I don't get to that point for a few days in a row I start to gain weight, feeling bloated and sick. When I string together many days of a complete breakthrough I feel spry and healthy.

When traveling, it has been virtually impossible to manage a DI breakthrough correctly. Plane delays and long layovers make it impractical to run in and out of the bathroom for those hours. I had one complete breakthrough during my vacation. I know this because I remember pawing through the fridge looking for club soda or Pellegrino, then raiding the bar for cranberry juice. It was one day out of five. And on the way home we encountered travel delays in an enclosed space with everyone coughing on me. I tried to stave it off, but my immune system—unless it is in pristine condition—can't win matches like that.

Well, it's 4:36am. I hate that, when you look at the clock and you think more time had elapsed. I wish it were two hours later, the sun coming up. I started writing this at 3:52am, so ... are you #@%&!* kidding me? Only 44 minutes have gone by? I'm making another pot of green tea, the hot liquid on my throat the only thing that can soothe me now.

Visit with Retinal Specialist

2011-12-21T10:26:00.000-05:00

I just returned from my appointment with the retinal specialist. I can barely see the screen because my pupils are dilated. So this will be short.

There is no more fluid behind my right eye causing the retina to partially detach. Last time the chorioretinopathy bloomed (about six weeks ago) the red dot splashed across my vision, then faded for the next few weeks. There is no more fluid, yet I still see the (smaller) red dot.

Diagnosis: scar.

I hope the scar (or tear mark, or whatever) will heal over time. Until it does, the optical illusion of the red dot will be there. [Rats.] This might be a while.

As for my eyepatch and flashing lights, the fact that I only need it later in the day should have been a clue. I talked for a long time with the doctor about this. Fatigue is the culprit. My right eye has minor damage now, so it will show signs of fatigue (the throbbing and then shocking pain) before my left eye. The right eye just gives up now as if it were the loser of a nightly Survivor challenge. It slips and falls, allowing the left eye to claim the immunity idol.

So my orders are to decrease stress and get plenty of rest. Taking two aspirin and calling him in the morning was probably implied too.

Early Blog #7 (The One with the Llamas)

2011-12-21T07:20:00.000-05:00

Almost done posting my old blogs. This is easily one of my favorites. This was written over two years ago:

TUESDAY, OCTOBER 13, 2009 8:03 AM, EDT

This morning (Tuesday) I still woke up first, but I was smart. Last night, MJ helped set out my morning comfortable outfit right next to the bed. Noah's pills were sorted and ready to go in a dish. I had located his Kong toy and had that set out already too, filled with peanut butter. So when I arose at 7am, I walked carefully downstairs, retrieved the paper from the front porch, took care of Noah without needing to look for anything, and went straight to the couch to lie down, do the crossword, and begin typing this without getting dizzy.

I am starting to love this journal, finding it is a way to put myself back together after such a scary journey. Nothing but down-time, nothing to do, and nothing you are SUPPOSED to do is a new experience for me. Again, it is the little things I must let go of for the time being, and it gives me a new clarity about my big picture. I don't fret about the second-by-second unfolding of my life right now.

The few days leading up to the surgery are still fresher in my mind than the days after the surgery. From midnight to 3:30am on Thursday, October 1, I had eight different MRI tests. A few hours later, at 8am, I got the call with the news about the "mass" under my brain, and surgery was quickly scheduled for the following Monday due to the tumor's size and how quickly things were changing with my vision.

With nothing but a few facts to chew on and an Internet connection, I naturally spent the following days secretly googling everything I could find. Googling things you barely understand is bad for your health, and it is also how bad political blogs get started, by patching together bits of truth that don't quite match.

My biggest fear was there was some kind of conspiracy about the simple nature of the operation. The removal was supposed to come out through the nose (which it did) but I worried incessantly that something would go wrong. The tumor was already unusually large for the area. It wouldn't fit out my nose. They would have to do an emergency craniotomy and cut the front of my forehead off, push my brain to the side and retrieve the tumor that way (the way it used to be done). I had nightmares about this.

When I arrived on Monday for pre-op, the first thing I was given at check-in was a standard sheet to sign where the top had been filled out in handwriting with the procedure I was agreeing to. The sentence read, "Transphenoidal approach and craniotomy for tumor removal."

Being a stickler for spelling, I did not appreciate (right off the bat) that "transsphenoidal" was spelled with only one "s." On top of that, why was a craniotomy mentioned? My nightmare was unfolding before me. As I glared at the sheet, someone approached me and asked for me to come out of the waiting room and into pre-op.

I said, "I have a question, and this is a big one. It says 'craniotomy' on this form I'm supposed to sign. That's where they cut your head completely open. They didn't tell me that."

The raucous waiting room fell silent around me like in those old E.F. Hutton commercials. MJ, who hadn't seen this yet, looked up from her book.

"Don't sign it yet. You can talk to the nurse about everything and have ALL your questions answered."

"Okay," I said. I was completely ready to bolt, go home and start over again with another opinion, but I saw no harm in walking to pre-op and talking further with someone more knowledgeable.

I was escorted to a private cubicle surrounded by curtains and sat upon a comfortable hospital bed with pillows. I took my clothes off, put on a hospital gown and waited, the unsigned form clutched in my hand.

A friendly middle-aged nurse entered, bearing a wide smile and nurturing eyes. She said, "I understand you have some questions, and we can talk about anything you want, for as long as you need."

I explained my concern for the word "craniotomy." I was not ready to have my head sawed open. No way.

"Well," she began, "a 'craniotomy' is actually a broad term for anytime they go inside your head. You are having a transsphenoidal approach, going in your nose. They have to make a tiny puncture to a small eggshell-thin skull bone in the back of your sinus cavity. Because of that little puncture needed to go inside to get the tumor, it falls technically under the BROAD term"—she held her hands far apart—"for 'craniotomy.' It's just a term."

She spoke so carefully, smiling all the time, looking so deep in my eyes.

I flapped the paper in front of her. "This doesn't mean they're going to cut my forehead off?"

"No."

I trusted her. We talked about other things. She asked me questions about medicines I took, whether I smoked, drank, used recreational drugs, feared for my safety at home, and general questions about what kind of life I led. I felt better. I signed the form. She brought my wife in to sit with me and began setting up an IV.

The anesthesiologist made an appearance and asked me questions. A lot of questions about what would make me comfortable during the wait.

I cut him off with, "Look, anything you want to give me is FINE with me."

He made his hand into the shape of a toy gun, playfully pointed it at me, and squeezed his thumb trigger while smiling. The nurse left with him and in a few minutes she was back holding a syringe.

"Fentanyl," she said, and put some into my IV.

I didn't know what this was, but it sounded good. I was still nervous, even if the conversation had calmed me down. In a minute, I was flush with euphoria. I wanted to hug everyone in the world. I was so happy! Love was everywhere, big red hearts popping out of the walls.

A friend had also joined us by now, and the four of us rejoiced, laughing about things, about the mysteries of life, how little we were when you compared that to the size of the universe. It was the best time of my life.

"We should totally buy a boat!" I exclaimed. "We could all live in a boat from now on. All four of us from now until forever. Why not?"

"Sounds great."

"With llamas," I added. "No one ever thinks about a boat with llamas."

MJ said, "You could scrape them in the winter to get wool to make sweaters if it got cold."

"Yes!" I exclaimed. "It's so OBVIOUS! We could all live on the boat with the llamas and make sweaters!" I eyed the syringe now sitting atop my blanket the nurse had only half-dispensed into me.

"Damn, woman!" I added. "You holdin' out? You an' me gonna get hooked up after this, you dig? You gonna be my CONNECK, ya hear?" I pointed between MJ and the nurse. "You two get hooked up, okay? That right there!" I pointed again at the syringe.

The nurse picked it up and slipped it safely in her blouse pocket.

"Oh, man," I said and leaned back, dreaming of our life on a boat.

I wondered again about the word 'craniotomy' on the form. I thought it might be cool after all if they sawed my forehead off. They could put a hinge on top and I could flip it open and shut at will. At parties, I could say, "I want to give you a piece of my mind," then flip my head open to get a reaction. Fun, fun, fun!

In another short while the anesthesiologist came in again and gave me something else. The nurse also put in the rest of the Fentanyl. I laid back again, looking into the sweet female faces surrounding me. I closed my eyes in utter bliss. If I didn't make it out of surgery alive, I had already lived a blessed and wonderful life.

Early Blog #6

2011-12-20T08:06:00.000-05:00

This blog from two years ago generated plenty of interesting comments at the time. The days following my first surgery I was compelled to write about some heavy stuff. Here it is:

TUESDAY, OCTOBER 13, 2009 12:06 AM, EDT

Monday night, late. Having trouble sleeping. I am doing my part by staying horizontal most of the time. My pain is still very present in the form of headaches and body aches, but it is more predictable and manageable than before. The pills they sent me home with do the trick for the meantime. I know when the pain is coming and I can stay ahead of it. The dizzyness is getting better and my vision is (miraculously) almost back to the pristine state it had been in when I aced the vision test for my pilot license. I can see colors again now, vividly.

Laying flat with nothing to do all day gives you plenty of time to reflect. On the Friday before my head surgery I needed to be cleared with a general physical to see if I could make it through such an invasive procedure. It was basic stuff like blood and urine tests, an EKG, blood pressure (high, as usual) and going over all the prescription medications I currently took to help with hypertension and asthma.

The most interesting part of the physical was the check-box questions you had to fill out. I had one sheet I worked on and the doctor had his own sheet. He asked a lot of the same questions.

"Tobacco user?"

"No."

"Alcohol?"

"Oh, yes," I said.

The doc looked up from his paper to study my response more closely.

I pointed to myself. "Musician," I said.

The doc checked the box and asked, "How much?"

"Two, three glasses of wine with dinner."

"Okay. Any more than that sometimes?"

"Usually," I said.

I imagine he put a star by that one. Then he moved on to a series of questions about my home life. Did I feel in danger at home? Physical or emotional abuse a constant worry, perhaps? There were several questions which came at this subject from different angles. I could have had a field day with this line of questioning about fifteen years ago, but things are great now so I answered, "No."

"Any thoughts of suicide?"

"No, not for a while."

He studied me closely again.

I said, "It's a no. Just check the 'no' box."

I must have been in some kind of a mood to play with that one. But, in reality, as I drove away from the doctor's office to do my final duty at a nearby lab—peeing in a cup—I thought the answers to these 'yes' and 'no' questions were so over-simplified.

No more than a few years ago, when my chronic pain issues from a botched hernia repair surgery overcame my body so completely, I found myself on our porch, an ice bag over the surgical incision and a pain pill in my system doing no good. I had my laptop with me and, more out of curiosity than anything else, I typed "suicide" into the Google search engine. I just wanted to see, nothing more. I felt trapped in a world of pain.

I had spent years already pursuing every way out of this and could not imagine the rest of my life being the way it felt on that very day. I wasn't even close to snapping; I was just curious what people did when they eventually reached a point where they could not go on. I just wanted to know what the protocol was, how you were supposed to go about things if such and such never turned around for you.

The web sites which came up right away were, of course, not instructional but interventional. "Visiting this website is a BRAVE and POSITIVE step. You are ACKNOWLEDGING you need help, and here are all the ways you can get it, etc.."

MJ came out to sit on the porch with me that afternoon. She knew it was a bad day for me pain-wise and she had been making me a bowl of freshly cooked chickpeas drizzled with olive oil and sprinkled with fleur de sel and cracked pepper, one of my favorite surprise snacks. I erased my browser's history, closed the laptop, and we sat and talked while I ate the chickpeas and felt ice melt over the tangled nerves at the spot of my hernia repair.

Another time, in eighth grade, I brought home a report card with a C-minus in Human Development. (I think the course was called, "Discovering Me," actually. It was basically sex-ed.) Worst of all, this C-minus dropped me into the second quintile in my class, an unheard-of shame in my household. When my mother would see this at dinnertime I knew a) she would probably kill me, and b) my father would not stop her.

I had nowhere to turn. After arriving home, I took a glass of tap water into our utility room in the basement where tools and miscellaneous cans and jars were kept. I found something with a poisonous skull and crossbones on the side. I opened the drip spout on this container and watched a small, solitary drop fall into the glass of water. I swirled the glass.

"Oh, God," I remember saying.

My hand trembled so hard I could barely get the glass to my lips. I took a tiny sip, then doubled over, crying and spilling the rest of the water on the floor. I knew I had just done it.

My brother came downstairs and we proceeded to watch the one hour of television we were allowed on school nights before homework: a half hour of Gomer Pyle, USMC (my favorite) followed by a half hour of Get Smart (his favorite). As the shows aired, I wondered how it would happen, how I would die. I imagined something sudden, like the birthing scene in "Alien" where my chest would break apart with guts spilling into the room. But of course nothing happened.

Dinner, even, was quite tame. After the salad, my mother picked up the report cards, surveyed the grades, looked me over sternly when she saw the C-minus, then put it down without comment.

The next day in class, I asked one of the most popular boys how he had done in "Discovering Me."

"D-plus!" he said triumphantly. "Fifth quintile." He clenched his fists and pulled them repeatedly towards him as he pumped his hips. The rest of the class took notice and egged him on.

The truth is, as good a student as I was at the time, I more than deserved the C-minus. Not yet aware of my own dyslexic tendencies and how to overcome them, I had run out of time on a paper and resorted to plagiarizing a whole paragraph, something I had never done before nor since. The teacher surely knew this but did not call me on it. The C-minus should have been an F, and I knew it. A deep shame about the sanctity and sacred quality of one's own work crept into me that day and has never left.

So it is, indeed, silly to check boxes, defining your life as a series of 'yes' and 'no' answers to questions that are rather blunt. It is so much more complicated than that.

Early Blog #5

2011-12-19T07:19:00.000-05:00

I have a few more early blogs to bring over after this. This is me writing two years ago:

MONDAY, OCTOBER 12, 2009 7:18 AM, EDT

It is Monday, only three days out of the hospital, and I have already done something stupid. I'm still a patient recovering, and I should be staying horizontal as much as I can, doing nothing but resting, especially for the next two weeks. MJ is helping with everything.

I woke up at 6:15am and decided to go downstairs while MJ slept. I scratched Noah's ears, one of those simple pleasures I love in the morning, and he followed me around as I tried to do a normal morning routine. He got his pills, but I could not find his rubber Kong toy which I put peanut butter in for him to play with every morning. Sometimes it rolls under a chair on the porch, so I did a lot of standing up and leaning over, looking for it.

It made me dizzy.

I found it in the living room eventually. I smeared peanut butter in there and gave it to him. I tidied up a few things in the kitchen and noticed an overhead lightbulb needed changing (one on the ceiling only I can reach). I retrieved a new bulb from the pantry, stretched up, changed it and took the spent bulb and the cardboard box out to the garage. I threw away the bulb, put the box in the recycling bin, then started to walk inside.

The world turned upside down.

I don't know how I saved myself, but in a split second my head made a beeline for the concrete. I somehow regained control and carefully made my way back to the couch where I am now lying, feeling extremely dizzy. My spinal fluid is probably still leaking, wounds still healing, and my brain is still trying to figure out what to do with the extra space in my head now that the tumor is gone. MJ came downstairs soon after, made me tea, and I am once again committed to being a patient patient for the rest of the day.

It is strange how much of the little things I cannot resist getting involved in around the house—changing lightbulbs, etc.—when I see they need to be done. The major decisions of rehabilitation (like taking time off from work or not driving) are easy. But the tiny things are hard.

Last night, MJ and I had a quiet evening where she grilled some perfect steaks (usually my job), and they came out better than if I had cooked them myself. Also, MJ made the fire in the living room which is always my job.

I wanted to do this while she cooked, but lifting logs and stoking the fire are strenuous things I simply cannot do for now. I watched as she tilted one log straight up and added another. I knew this was the wrong way to do it, that the fire would die. I didn't say anything, thinking she would find out the hard way and learn. It was the way I learned to make fires: by trial and error on my own.

A few minutes later, to my amazement, the fire caught on again. It was not the kind of fire I ever made, but the vertical log began to burn with this sinuous flame that rose up from somewhere beneath it and swirled around the log sensuously before the flame disappeared on top. It didn't ever die. It kept burning and burning in this odd arrangement and it looked so alluring. I couldn't take my eyes off this simple, beautiful thing she had made using only her instincts.

I do spend a lot of time micromanaging and analyzing things, I suppose, and when I was in the hospital it is a wake-up call to have the tables turned on you. Maybe this happened the second day after the surgery, but a female doctor popped her friendly head inside my room and asked if a group of med students who wanted to study my case could come in.

"Sure," I said, groggily.

In a few seconds, the room was filled with a half-dozen young people in white coats, each wheeling in portable lecterns supporting their laptop computers. They surrounded me in a semi-circle around my hospital bed.

The doctor rattled off a number of things very quickly: "Male, 41 years old, 6'3", 230 pounds, history of hypertension, cough-variant asthma, allergic to caviar, dogs, cats, dust mites, trees, no known drug allergies, transsphenoidal approach for removal of pituitary tumor, pathology not back." The students tapped away on their keyboards.

It all seemed so deeply personal, how quickly this information was landing with strangers. I imagined her continuing in the same breath: "Childhood in foreign countries, caught playing with himself at thirteen, never gotten over it, adolescence of sheltered suburban paranoia and guilt coupled with a curious and intelligent disposition led him to break away from everything expected of him, pursued a career in music and embraced relationships with progressively destructive women until it all blew up in his face ten years ago."

I imagined the students tapping away some more, totally serious and intellectual. No one asked me anything. A few looked up from their computers to get a mental image, but mostly they stood and typed.

"Thank you," the doctor said. She waved and the students wheeled their portable lecterns out of the room efficiently.

Yesterday afternoon I looked in the mirror and noticed I will have a battle scar to show for last week. The bottom of my right nostril has a notch. A few days ago the surgeon removed the packing from my nostrils and sinus cavities. Dried blood was everywhere inside my nose. I am not allowed to blow my nose or clean it because things are still healing, but the outermost scab has fallen off. Sure enough, there it is in the mirror: a wedge of flesh missing from my face. A notch.

About 25 years ago, the time when my father first knew he was succeeding in business for real, he built a new home for our family by a lake. My mother's dream of planting and gardening went into full swing and they built a gazebo out in the yard so they could sit in the evenings amidst her creations, talking about things. His most notable animal friends out there were the two chipmunks Notch and Ragtail, nicknamed for their respective appearances. Ragtail had a tail almost devoid of fur, and Notch, his favorite, had a chunk of his ear missing. I always wondered what had happened when Notch lost the tip of his ear. My father would bring some peanuts in his pocket on the evenings they sat out there.

"Notch! Notch! I have your peanut!" he would say.

I was gone at Juilliard by this time, but when I was home for school breaks I could see this firsthand. A chipmunk would appear in the distance and see my father holding up a peanut between his thumb and forefinger. He would tap the peanut with another finger. The sound of the rattling nut cutting through the still air would prick Notch's ears to full attention. Notch would run quickly across the yard, crossing half the distance in no time. My father then placed the peanut inside his shirt pocket. Notch would slow down, climb up onto the gazebo, up the back of his chair, over my father's shoulder, go into his shirt pocket, emerge a moment later with the peanut in his mouth, then scurry back to his nest. This repeated a few more times every night until the peanuts ran out.

Ragtail sometimes got in on the action, but Ragtail was always more reserved, watching over things as they unfolded. I sensed my mother took a liking to Ragtail's caution while my father enjoyed Notch's initiative and ingenuity. For all I suspect now, Notch and Ragtail were a couple.

As I study the new notch outside my right nostril, I know I might be asked about it in the years to come. I don't have other visible scars, and since I never excelled in sports or got into bar fights I've never had to deal with a battle scar. I suppose it's the sort of thing other men do—telling stories of how they got this one or that one—and on some level I always wished I could join in with that, telling an inaccurate, elaborated story about a fistfight, an attack by a wild animal or a cheap swipe from an opponent's hockey stick.

But if I am asked about my notch, I can say I got it when they took a golf-ball-sized tumor out of my head. That will surely shut anyone up.

Early Blogs #3 & #4

2011-12-18T10:52:00.000-05:00

More from over two years ago. These are the first two blogs I wrote after coming home from the first brain surgery (October 10 & 11, 2009):

SATURDAY, OCTOBER 10, 2009 2:47 PM, EDT

It has been a day since I decided to come home to continue my healing. One thing clear to me is that I am still a PATIENT. The familiarity of my surroundings at home encourages me to get back on my horse, doing normal things like filling Noah's water dish or answering the door. In reality, even simple tasks like this are difficult.

Last night I went straight to the couch, ate a plate of roast chicken MJ made for me, watched "The Office", then went to bed with a a pain pill. I woke up at 4am, disoriented, and needed another pill for my splitting headache. At 5am (my usual waking time where I use the morning hours for seeing after Noah's morning routine, composing, and relaxing with a crossword puzzle) I was encouraged to keep dozing in bed while MJ took care of Noah.

I got up at 7:30am and used all my power to get down the stairs and lay flat on the couch. Having switched to oral medications (which are weaker and less responsive than intravenous) I feel achy and also like I have received one heck of a punch in the nose (the entry site for getting to the tumor). I feel like Mike Tyson, only without the tax issues. Actually, scratch that; I feel like Mike Tyson.

As I lay on the couch, MJ brought me hot ginger tea and a cold glass of authentic apple cider. After five days of sickly sweet hospital apple juice, this was more welcome than you can know.

I have spent a quiet morning and afternoon reading and catching up, but other things will have to wait. A pile of mail sits unopened on the stairway going down to my desk. I won't worry about leaving it that way for a few more days.

I did the entire Wall Street Journal crossword puzzle in one sitting, and it was while doing this that I noticed my eyesight was better. Even though I still have dimness and color loss in my left (dominant) eye, I was able to read the print clearly. Most importantly, the "depth of field" was coming back. I held the paper at various distances from my eyes and I could focus on the words. Previously, I could only find one fixed distance from my left eye where things were in focus.

The pathology came back on my tumor but it is even more confusing now. We do know it was a tumor, but it was not a traditional pituitary tumor. It grew right next to the pituitary gland and crushed it (making it look like a regular pituitary tumor) but it did not originate from it. Comprised instead of "dead ghost cells" around which a cyst or cysts were forming, I know my case is now being sent around the country to people who study atypical tumors like mine. Complicating this, the spinal cord leakage was adding another veil to the case. Once again, my medical issues place me in the 1% of cases that don't fall conveniently into a single category. The good news is in all likelihood my pituitary gland will be able to spring back without a lifetime of hormone replacement therapy. This is very appealing, but I still want to know just what the heck it was in the first place.

So, things are getting better. But I still feel awfully dizzy every time I stand up, and I am still supposed to spend the majority of my time in a horizontal position. I'll probably watch a movie this afternoon and sleep some more. There is no replacement for solid stress-free rest.

SUNDAY, OCTOBER 11, 2009 9:54 AM, EDT

Sunday morning. One way I can judge the past week is how fast Sunday has rolled around again. All Sundays have special pacing. For me, it's the extra time in the morning with the paper, a larger breakfast, and (in the Fall) the Detroit Lions games. It seems way too soon for another Sunday to be here already.

Last Sunday was my final day before surgery. I was nervous and also in denial about what I might be up against. I tried to make it as normal a day as I could. MJ and I watched the Lions lose another game and she made me a special old favorite: bone-in pork chops and macaroni and cheese, her father's recipe. I was not feeling very well all day. I had terrible headaches, deafening ringing in my ears, and my vision was so disorienting I could barely read or use my eating utensils without dropping food.

What followed the next six days was a blur I am still sifting through. It is all just images now, popping back in my head randomly yet with clarity. I am trying to remember when certain things happened. My memory has always been good, and as I continue to rehabilitate at home I'll have a lot of time to reflect on what happened last week.

Monday night, after the surgery, is coming back. This was one of the worst nights of my life. I remember being wheeled into a bright room filled with advanced equipment. Already feeling the effects of drugs designed to calm me down, I carefully hopped across onto an operating table. The anesthesiologist handed me a breathing mask and told me it was just oxygen and to breath deeply. I did, and continued to look at the computer monitors and bright lights overhead. Soon, my lower jaw would not move. After another breath I felt extreme pain. I opened my eyes and found myself in a different room. I screamed and someone injected something in my IV.

"Is the surgery over?" I asked.

"Yes."

"I'm so thirsty. Can I have a sip of water?" A straw was put at my lips and I sucked. The pain seared back through my head and I screamed again. Another syringe flashed in front of me and I felt better. I asked again if the surgery was over. I could not believe it.

For the next bit of time (I have no idea how long any of this took) I kept asking for more water, more water, and the pain never ended. They wheeled me to a critical care room in the neurological wing then brought in my wife and a friend who had sat with her the whole time through my surgery.

I needed more water and kept asking for it. Pain relief and water was all I wanted. I never knew who the people were around me because it hurt to open my eyes. Soon enough I could hear MJ's voice. Another straw was put to my lips and I sucked down a full glass of water and then gasped for air. I felt my wife's hand, clenched it, then felt for her friend's hand and clenched that too. I held both so tightly and cried out.

Not much else is clear, but later that night MJ had gone home and I knew I was alone with a nurse. Every time I woke my mouth was dry and baked. An oxygen tube dangled in my mouth because my nasal passages were sealed shut with surgical packing. I lay flat on my back and often my tongue would fall to the back of my dry throat and stick there, cutting off my air supply. I would jolt awake, gasping for air, begging for water, sometimes chewing on the oxygen tube in desperation. Then a sear of pain would hit. Then a syringe would flash by again. Then the whole process would repeat and repeat.

One point during that first night, I opened my eyes to see the nurse studying me closely, standing up and taking notes on her laptop which sat atop a lectern. I was so disoriented. All I remember asking over and over again was whether my dog was at the foot of my bed, whether he was okay, and whether she had given him his evening pills. I asked her this over and over, and she typed notes about this on her laptop.

One thing I never would have predicted last Sunday was that I would be walking outside on my own today—this Sunday morning—retrieving the paper from the driveway and sitting down with it in my Lions sweatshirt, sorting through the various sections. I continue to be dizzy taking even short walks to different parts of the house, but the thought that in one single week a tumor has been extracted from my head and I am thinking normally and doing normal things in my own house just amazes me.

Early Blog #2

2011-12-17T12:23:00.000-05:00

Saturday, October 3, 2009, 6:06am

Saturday morning. Two days until surgery.

It was only two days ago that I received the phone call from my neuro-ophthalmologist informing me of the findings of my MRI the night before. Up until the call, a tumor was as far away a diagnosis as I could think of. For the week before that, all signs pointed to multiple sclerosis (MS) as the likely culprit, something I was keeping secret from most everyone.

The phone call began like the old SNL sketch where a slide whistle played to indicate the actors' sense of hope: "Hi, Mr. Miller. I have studied the MRI." [Whistle up a third.] "You do not have MS." [Whistle up another third.] "You have a mass in your brain." [Whistle drops all the way down.]

The neuro-ophthalmologist told me someone would be contacting me shortly to make arrangements for MJ and me to meet with a neurosurgeon to discuss options. The meeting was in a few hours. I broke down after hanging up the phone. MJ held me and said we would get through this together, the same way we always got through things together.

We drove to St. Mary's Hospital's new Hauenstein Center, a major step up in luxury from the main building Grand Rapidians have gotten used to over the years. I noticed it had the calming ambience of a nice resort hotel—not a hospital—as we waited for the consultation. I half expected someone in a white coat to walk by with a tray bearing two coconuts with straws coming out the tops.

From the start, I liked my neurosurgeon. Of course, in this day and age I had googled him prior to the meeting, reading about his background and his rating from past patients. No red flags. He had a cool, detached, and intelligent presence. He wasn't pretending to be my best friend. I like my surgeons (and I've had a few) to be that way. Other doctors I want to have more of a connection with, but I want surgeons to think of me as a cellular structure. While he went through the motions of asking standard questions about allergies to medications, I caught him studying different spots around my eyes and nose, pondering how he might get his sharp little instruments in there.

He ordered a panel of diagnostic tests, the most important being one to rule out a prolactinoma, rarer in men because it makes you produce breast milk. Prolactinomas are treated with drugs and ESPN, not surgery. Once we knew it was not this, surgery was the only option left to get the tumor out. Even though it was probably benign, it was growing. It already made me half blind in one eye, and it would only continue to grow. One way or another, it had to come out. Since it rested just behind my sinus cavity, it could be extracted by going in my nose, tapping through a thin egg-shell-like bone, and carving it out.

Since I play the oboe for a living, it concerned me that any surgery dealing with my mouth or my sinuses (if it went wrong) could destroy my career. My neurosurgeon offered up the one alternative method—more rarely used—where you saw off the front of the forehead, push the brain to the side and reach down between the eyeballs to pop the sucker out. As he described this, MJ became intensely interested in her newspaper. I thought about it for a moment and told him we would prefer the first method.

At the end of our meeting, I asked if we could see the MRI.

"Sure," he said. "Follow me."

We went in the next room where large computer monitors flickered with black and white images of human anatomy. The screen he went to displayed a close-up of obviously someone else's neck. Most notably, I could see a metal plate and two screws holding this person's vertebrae together. It looked gothic, out of a horror movie, though certainly that patient is grateful for the things modern medicine can do for people. He closed the image and searched for my file.

"Here it is," he said, and stepped back.

The MRI showed my tumor, larger than I ever thought would be. It sat there, bulging and taking up all the free space behind my nose and eyes. About the size of a golf ball, I thought. As I looked more closely, I could imagine little blood vessels spelling, "Titleist." So there it was: at once part of me but also my foe, the enemy within.

"How long has this been there?" I asked, incredulous that something like that could be inside my head, unnoticed.

"There's no way to know," he said.

My First Blog

2011-12-16T08:37:00.000-05:00

Some readers don't know this, but there were a few blogs I wrote prior to creating my own website here at Husband Amused.

In the next few days I will copy those blogs over here so all my writing is in one place.
I am still waiting for the results of my latest blood test (measuring testosterone) and my appointment with a retinal specialist is next week.

In the meantime, this is my very first blog, the words I wrote three days before my first brain surgery. From my perspective now—with everything I have learned—I can't believe the light-hearted tone of it, but I have always used humor as a coping mechanism when I am afraid of the unknown. For what it's worth, enjoy!

FRIDAY, OCTOBER 2, 2009 8:43 PM, EDT

Hello, friends and family, and welcome to my brain tumor surgery journal! Today is Friday, October 2, 2009 and my surgery is scheduled for Monday. This means I have the whole weekend in front of me to party. Actually, make that par-TAY. A nurse called me a little while ago to give me instructions for my big day: "Nothing to eat or drink after midnight Sunday night," she said.

I asked, "But before midnight everything is okay?"

"Right."

"I can eat or drink ANYTHING right up 'til midnight?" I pressed.

She paused, then said, "Yeah, I guess."

Bingo. Jello shots @ my place. 11:59pm. Bring togas.

Eh, rewind. This is serious. But the only way I can deal with serious situations concerning myself is to treat them with self-deprecating humor. It helps me but it is hell for my acquaintances.

The past two days, unsuspecting friends have asked, "So how are things?"

“Okay,” I reply. “Brain tumor. You?"

I hear a sudden choking sound when I say that. It’s the sound of being punched in the gut, a deep inhale and a jammed garbage disposal all rolled into one. I love that sound.

After all, what is one supposed to say when a friend reports to you with a brain tumor? “Sorry” doesn’t cut it. “Sorry” is appropriate for minor inconveniences like Internet interruptions or air conditioner malfunctions on hot summer days. “So sorry” is what friends say about your sick relatives. For immediate family, the standard nowadays is, “Oh my God, I’m sooooo sooooorrry,” and to couple that with a meek gesture of the forearm where you helplessly reach for (and miss) the elbow of the griever.

But what is one supposed to say about a brain tumor? Like the guitar amplifier turned to 11 in "Spinal Tap," there is only so much longer you can stretch out, “Soooooo soooooorrrry” before it crosses the line dividing sincerity and mockery. No one wants to make that faux pas, so they don’t go near the line. What is left (besides the aforementioned choking) is nothing. “I don’t know what to say,” “Oh, man…” “Whoa,” or “H-o-l-y…” are the most common.

For me, rest assured this part before the surgery is easy. The nice thing about my brain tumor is it is everything you could ever want in one. Benign. Round. No bigger than a ping-pong ball. Accessible through the nose, so no nightmares about nasty drills or saws. And this tumor is not IN my brain; it is UNDERNEATH it, pressing upwards on my optical nerves and causing my vision problems. The location of the tumor behind my eyes makes extraction a little dicey, but the tumor itself is awfully boring. If something this ordinary grew on your leg you could get rid of it with a box-cutter and Windex.

If you are still reading, you are someone who understands me. You know how I cherish paradox.

My plan is to use this journal as much or as little as I feel, in a way that will help me through this so others who care about me will be helped too. I have always taken joy in writing irreverently about my life experiences. I have no intention of doing otherwise at a time like this.

Peace, Ale

The Puppy That Wouldn't Wake Up

2011-12-12T17:55:00.000-05:00

Before my medical update, here is a short memory:

The worst day of my life was the first Christmas I can remember. My mother and father bought me a little puppy, the one I saw in the window of the pet store. They woke me on Christmas morning and told me to look under the tree. I was so elated to see the puppy sleeping there. I ran over to him.

“It’s your new puppy!” my parents chimed, but after a minute they saw tears in my eyes.

“He won’t wake up!” I cried. “Why won’t he wake up?”

“He's not sleeping?”

“No, he’s not!” I cried. “My puppy’s dead!”

Just kidding. That was me making fun of my tendency to tug at the heartstrings with old memories. This past Saturday, at a Nutcracker performance, a friend told me, “Your blogs are great, but I always cry at the end of them! Write something happy, will you?” She punched my arm and pointed a stern finger. “Something funny for the next blog. Got it?”

Got it.

I have an appointment with a retinal specialist in one week. My neuro-ophthalmologist wants the back of my right eye to be examined more closely to make sure my current symptoms requiring an eyepatch are not anything more than the mouthful that is central serous chorioretinopathy. That will be next week. On Wednesday of this week, my testosterone level will be measured again. If it's still unacceptably low (as it was two months ago) my endocrinologist may switch me from AndroGel to needles in my stomach.

Well, that's not funny at all, so I'll do what I have been doing best recently: writing old memories as a way to reduce stress. I hope this is funny enough:

In the eighth grade, I was back in Michigan after a childhood in Mexico, Australia and Venezuela. Classes were canceled one week for an annual event my school called, “The Game of Nations.” All eighth graders convened in one large room and divided into five fictitious nations. Basic parameters defined our nations, but for the most part we were set free to do what we wanted, learning in real time about the complexities of diplomacy and how to make the world a better place.

“Can we assassinate people?” one student asked.

“Yes,” Mr. Price said.

Mr. Price was my favorite teacher in the eighth grade. He taught history, and under his tutelage I grew interested in the subject for the first time. He was sturdy and he wore blue blood on his sleeve, the pipe in his hand adding to the look. He walked in at 8am every morning in his tweed blazer and stepped over the tangle of students wrestling on the floor. He tipped his chin up before addressing us bookishly: "Good morning, gentlemen. Let's get started, please.”

At the Game of Nations, the teachers listed off specifics about our countries: GDP, agriculture, governmental systems and population. Mr. Price handed five sealed envelopes to each nation’s appointed Secretary of Defense.

“Arsenals,” he said tonelessly and chewed on the tip of his pipe for dramatic effect. “Top. Secret.”

“Wow.”

I was part of Nation One, and we soon found out Nation One had an added wrinkle. A teacher sectioned off a quarter of us—myself included—and she drew a sixth landmass on the giant map in the room.

“Colony,” she said. “You’re part of Nation One, but you’re settlers.”

“Okay,” we said.

The game started. The teachers left us alone for a week. We didn’t quite enter “Lord of the Flies” territory, but we flirted with it.

“Nuke ‘em! Nuke ‘em! Nuke ‘em! Nuke ‘em!” chanted one of the students. He shouted this war cry all day, every day, for the entire week. His bellowing baritone voice bounced off the concrete walls and echoed while he inhaled another tank of air.

Our first task was to give our nation a name. One student cleverly composed: “Federal United Communist Kingdom.” The name eluded the teachers for a few days until he designed an elaborate poster calling attention to the first letters of each of the four words. (Please don’t look back.) The teachers intervened.

The other time a teacher intervened was when I brokered a deal between our colony and the mainland of Nation One. The way I saw it, we had everything to gain by moving back there. They had cities and we had bananas.

“You can’t go back!” the teacher told me sternly. Then she whispered conspiratorially, “We set it up so you would rebel against the mainland. Declare independence or I’ll fail you!”

Both my brothers were good with strategic war boardgames (in the days before video games) and as their little brother I picked up a few things.

“Let me see the arsenal,” I demanded of our Secretary of Defense.

“No,” he said.

“Lemme see it!” I pressed.

“NO!”

“Alright…”

He said, “You’re not doing much. Get us foreign aid.”

“Okay.”

I walked over to Nation Three.

“Can we have foreign aid?”

“What?”

“Foreign aid. Give us money.”

“What for?”

“You know. Stuff.”

“No.”

“Alright…”

I walked back to our colony.

I devised my own two-tiered plan. Deception, then chaos. Deceive another nation into thinking we had a low arsenal, tempting them to attack us, then assassinate their leaders while unloading our real arsenal. Then I would figure out what to do next.

I typed a fake arsenal report and sealed it in an envelope like the one Mr. Price handed out. It read: “No ICBMs. Don’t let other nations know you don’t have nuclear capabilities or they will be stupid not to attack you.”

I went to the cafeteria at lunch. I wrote, “ARSENAL: MOST TOP SECRET” on the forged envelope and got in line for meatloaf. Upon sitting at the community table, I slipped the envelope under my tray and passed the lunch hour chatting with nemeses from other nations.

When lunch was over, I lifted my tray and pretended to forget about the arsenal report under there. Behind me I heard a skirmish followed by animated debate. As I walked out the cafeteria, a student rushed up to me.

“You left this by mistake and they wanted to open it!” he stammered. “I don’t want us to get in trouble.”

Foiled. My plan—whatever it was—foiled by a lone citizen with a conscience.

At the end of the game, we presented reports to the panel of teachers. One student easily stood out above the rest of us. All week he had been a case study of diplomatic industry, traveling between different nations, brokering deals, saving the planet and kissing babies. He even had a briefcase. When called to give his presentation, everyone applauded wildly.

“Thank you for that warm welcome,” he mused. Then he gave an elaborate report on the state of the world.

I was up next. Two or three students clapped lamely.

“Thank you for that warm welcome,” I mimicked. All the teachers—straight faces until now—cracked up in unison. That had always been my gift: charm the teachers even though I was a misfit amongst friends. They gave me a passing grade even though I obviously faked my way through the presentation.

Later in the school year Mr. Price dove into details about World War II. He played tapes of Winston Churchill’s voice on the radio.

"Listen to the tone quality," he instructed us. "Listen how the sound of a voice could rally a nation!"

The sound. As a budding musician, this interested me very much.

Then we were on to Vietnam and a parade of sobering photographs. Mr. Price brought in a television one day and showed us “Apocalypse Now." As our bodies grew and changed, the seriousness of the world out there evolved with us.

But eighth grade still was the year of wrestling matches, fist fights and a sport we invented called "Killer Ball." No rules, just fight anyone to score at any cost. We fought because we loved to. We punched one another so hard our arms turned red. And we loved receiving punches, seeing how much our stronger bodies could take. But at every turn Mr. Price was there showing us what war really looked like. It was our world; we had the power to do anything but there were consequences, bad and good. Perhaps influenced by this, some in my class have already gone on to shape the national debate on certain issues. Aim high, Cranes and Aardvarks! (Our school motto and mascots.)

At my high school’s 25th reunion last summer, I met Mr. Price once again. I would not have recognized him had someone not directed me to the man bent over in a wheelchair. But once I kneeled by him the teacher I knew appeared. I jogged his memory by telling him I played the oboe.

“Oh yes,” he remembered. “You spent a lot of time on that back then.”

“Still do,” I replied. “Professional now.”

He nodded. If the pipe had been in his hand he would have bit on the end of it to mark the moment. Another one of his students, he thought, somewhere in the world now.

I added, “You were an important teacher to me.”

“Really?”

“In seventh grade I was coasting, too erratic. You showed me the value of honest research and how to construct a compelling argument. Thank you for that."

“Well, you just made my day,” Mr. Price said.

I hugged him goodbye. As I walked away I kicked myself for forgetting to mention the most interesting thing I took from his classes, the passion he had for the sound of Winston Churchill’s voice and how it shaped the texture of a world at war. My history teacher may have been my first great music teacher, actually. Musicianship begins with a passion for sound, identifying and curating iconic sounds.

As it turns out, this memory wasn't as funny as I had originally envisioned. I guess I'm just a sentimental kind of guy.

R Is for Pirate

2011-12-09T09:00:00.000-05:00

I remember our house in Melbourne in the 1970s. It was bigger than we needed. Funky, with old and new clashing together. Our pet cockatoo roamed freely, chewing chairs apart and adding to the chaos. A few years ago I had a dream a dark part of myself was still hidden in this house. I dreamt I went back there and looked behind the walls, trying to find this darkness. I never found it.

One of the extra rooms we didn't need in Melbourne was turned into our dreaming room. It was just off the bedroom shared by my brother and me. Toy shelves lined one wall and a work table spanned the width of the room. My father made everything in there; he loved constructing things with saws and plywood. My mother painted the long, flat work table red. She insisted this table be clear. Never cluttered.

"Open work spaces!" she trumpeted. "Open spaces to dream."

We had drawing tablets, colored paper, pencils and crayons. I practiced my letters in there, but I had trouble with "P" and "R." Every time I drew a capital "P" my crayon didn't stop and I drew an extra diagonal line to make the "P" into "R." It frustrated me; even when I drew a new one to correct my mistake I would still do it wrong again. I drew a second deliberate "P" and then I finished the motion and made it into a capital "R" again. A compulsion within me would not let my hand stop with "P." I needed that final line to bisect the open space. Then I crossed out the line. Then I would do it again. Failure. I hated myself. I was six.

Now forty-three, I suffer from central serous chorioretinopathy—my retina detaches and reattaches based on my anxiety level—and I have been wearing an eyepatch on and off for a few weeks. I look like a pirate with a capital "P." "Arrr," is my common response when people study me quizzically. I look like a pirate, so why not? With spotlights whizzing past my eyes on stage, I have little choice. The throbbing starts, the brain shocks hint, and I have to block out the flashing lights or I'm in for a world of hurt. It looks weird but I don't know what else to do when it starts. In the words of Jerry Seinfeld, I "don't wanna be a pirate."

My favorite letter is "Q." You draw a perfect circle then add a flourish at the end, that little diagonal line. "O" is half a letter to me. Like "P," it doesn't have the finishing stroke. I think about things like this now, these tiny compulsions within me, tracing their lineage back as early as I can, because I need to if I want my normal vision back someday. I dodged blindness when they found my craniopharyngioma tumor in time, but now I am threatened by another rarity. So I examine every moment of every day, looking for clues. Sure enough, to this day when I handwrite "P" or "O" I still feel that momentary drive of inklust. My brain has to take over and instruct myself: "Pull. The. Pen. Back. Do not draw the diagonal line." I have learned to live with these moments, to let the "P" and the "O" just be themselves even though they look incomplete.

I wonder if this is why I start every day with the New York Times crossword. It's the first thing I do after giving Noah his pills and his Kong toy. I see the blank grid and after a short while it is filled with my handwritten letters, all capitals, neat as can be. When I study the completed puzzle every morning, scanning for mistakes, I feel something release in me; it is the satisfaction I can communicate for one more day, that I have my letters in order. For one more day I can face the world and speak everyone's language, the one with those silly half-letters.

My Mother's Kiss

2011-12-01T09:42:00.001-05:00

Searching for clues, always. The red dot in my vision persists. The two other times chorioretinopathy afflicted me the red dot faded away in about a month, a relatively short amount of time. Often, six months is the rule of thumb. But it has been a few weeks already with no sign of diminishing.

I have thought a lot the past week, and I apologize for being behind on my emails to many of you. It is helpful to me to soak in a lot of your private comments and write some more "out in the open," so to speak. Sometimes, I wonder if I miss out on some universal truths if don't do it this way. The very nature of a public blog encourages me to be very honest.

The most interesting thing from my past week is another early memory that surfaced, one from my time in Australia in the 1970s when I attended a private all-boys' school in the first through third grades. The third grade was when I started on the oboe, and (the way I have remembered it so far) my interest in music began around that time. Before that I was into coloring, but after starting the oboe I was hooked. That was the way I assumed it happened.

Until I remembered something this week.

In the first grade we sang. Every morning we began in an assembly, all of us in school uniforms, coats, ties, caps, and we sang hymns while looking up to the podium lorded over by the Snape-like presence of our headmaster. He wore flowing black robes and when we didn't sing well he stepped aside the podium, halted the pianist, and criticized the lot of us. I hated singing.

But one day I remember clearly now. In the afternoon, our teacher took us to a different part of the school and opened a box full of jangling metal items. It was close to the Christmas holidays, and I took an instant liking to the twinkling sounds. I wandered over to the box and looked in at the shining items.

"Take one each, children!"

I picked a triangle made of chrome. A string dangled from it.

"Hold it by the string, Alexander, and hit it with this piece of metal."

"Okay!"

The teacher organized us on risers and taught us a simple song where we didn't have to sing, only hit our instruments on cue. I loved it.

When we finished rehearsing our portion of the school's program, the teacher asked, "Which one of you would like to conduct this?"

I raised my hand.

"Alexander? Come to the front, please."

I walked to the front and faced the rest of my class.

"Now take them through the piece we learned," she said.

I conducted the whole piece with my triangle beater.

"Good!" my teacher said. "Do that on the concert, will you?"

"Okay!"

At the performance, my mother sat in the audience. A few months prior, she had dropped me off for my first day of school here in Melbourne. She rolled down the car window and wanted me to kiss her but I would have none of it. As I reddened, she took note right away and rolled up the window so as not to embarrass me further. She drove off. On the day of the concert, I saw her in the audience but barely recognized her. Fancy scarf, styled hair and makeup. Not the mother I saw at home, the one who often yelled at me.

When our number came up we formed into rows on the risers and sang a hymn. Then we picked up our percussion instruments and I walked to the front. I conducted the song where we didn't have to sing, the one with just sparkles of sound. Then I went back in line and sang another hymn. Then the concert ended.

I wandered up to my mother, expecting to be led by the hand, wordlessly, back to our car. Instead, she astounded me by hugging me deeply and kissing me repeatedly on my cheek.

She bubbled, "You didn't tell me you had a special part! You were so good and I was so proud of you!"

I didn't think I had done anything special, but I took notice. Whatever I had been doing until this moment to impress my mother hadn't been working, but this one day where I happened to raise my hand and volunteer to conduct had blown the roof off her expectations of me.

Getting such a glowing response from her was never easy after that. I can't think of a time between then and the day I received my acceptance letter into Juilliard where she showed the same degree of careless glee. Not even the day I played my first oboe concerto in high school after winning a competition; she wouldn't even sit in the audience for that. She hovered in the doorway of the performance hall, reserving the right to wander off on a moment's notice.

Six years later I passed my first preliminary round of a professional audition. It was second oboe in the Metropolitan Opera, a top job. In the first group of seven oboists playing behind a blind screen I was the only one chosen to pass to the semifinals. (I didn't get farther than that.) But when I called her to tell her how I had finally made it past a first round, I was so excited, almost crying. She cried too, telling me on the spot it was the best phone call she had ever received.

The day I actually won a real oboe job, I called her too. She was more reserved about this call, saying things like, "Okay. Good. Okay. Okay."

The day one of my orchestral compositions had its New York premiere in Carnegie Hall, I bought all the tickets in the front box, closest to the stage. The box filled with family members who had flown in, everyone eager to watch this rite of passage for me. My mother was there, too. After the final notes (my piece was last on the program) the conductor called me to the front of the stage for my bow. It was a full-house standing ovation in Carnegie Hall. Not bad. As I walked off the stage I looked straight up at my family. Enthusiastic applause. My mother was clapping, too, but I knew how to read her eyes which squinted just a bit. I kissed my fingers and blew a kiss up to my family's box as it disappeared under my head.

Back at the hotel, I went to my parent's room to visit before changing for the after-party. My father beamed with pride, but I saw my mother with crossed arms standing quietly behind him.

"What did you think?" I asked her.

"I liked the violin soloist," she said. "Now she was good."

Well, I asked for it. And I knew the kind of response I would get.

A year after this, an MRI found she had glioblastoma, a deadly brain cancer, and a few months after that she was gone. Even on this trip to New York I wondered if something was wrong. I couldn't figure it out because she seemed too young to be going senile, yet straight lines of logic often eluded her. She would say we should walk to Lincoln Center, then right after that ask what Lincoln Center was. I should have known. In fact, I did know something was wrong but I didn't know what to say about it.

The morning after she died my father and I stood next to her open casket. He asked if I wanted a moment alone with her. I did. When it was just my mother and me alone, a sensation overwhelmed me. I felt she would rise up. But she did not. I didn't touch her hands, but I leaned over her face and kissed her forehead softly. The coldness on my lips told me she really was gone. I said only these words: "I promise to be a good son."

At her memorial service I composed a piece for four percussionists in memory of her, just sparkles of sound, bells and triangles twinkling for ten minutes. I can't believe I never saw the connection until now, the reason why I had to write for only percussion. Even the piece's title, "Memory Box," evokes in my mind not her own memory box but the box my teacher brought out with all the chiming metal instruments in it, the first time I knew such things existed. Also, it was the first time my mother showered me with affection.

We performed "Memory Box" in Detroit's Orchestra Hall, and right after that my father and a close friend endowed an oboe chair in her name. During the performance, MJ and I also flanked the stage, holding crystal goblets, running our fingers across the tops of them to produce a celestial hum. Towards the end of the piece, three triangles chime at different pitches while a log drum beats slower and slower like a heartbeat peacefully fading away. When the instruments all fade out there is only MJ and me, at opposite ends of the stage, running our fingers over the crystal, holding onto our notes. MJ lets go of her note, then it is just me running my finger over the crystal. Then I let go too.

The Yellow Turkey

2011-11-25T21:17:00.000-05:00

I will always remember two Thanksgivings ago as the day I hit bottom. I suffered those extreme hot and cold flashes (burn and freeze flashes, more accurately). I experience “flashes” of hot and cold now, but it’s not the same thing. The debilitating severity of the ones following my second surgery made it impossible to do (or even think of) anything else. If I read a book, a moment lost in thought would send me into swings where—in the span of a few minutes—I would feel my bones freeze, then my body burn in an oven, then my bones freeze again, then my body burn in an oven again. For many days I did little else besides perch on the edge of the sofa and pray the combination of clothing I wore would keep my temperature stabilized. It felt like balancing on a basketball while wearing roller skates.

Back then I was alone with MJ and Noah as Thanksgiving came and went. MJ cooked up a large feast, filling the house with aromas from our childhoods, hoping it would spark some kind of healing in me. My kind of woman, I have to tell you, using food to motivate me like that. I get a brain tumor and MJ goes to the grocery store. It worked. But it took a long time to work. On that day, with the table full of glorious creations, I eased myself into a chair at our dining table and I couldn’t eat. It was that bad. It occurred to me then if I didn’t get any better I wouldn’t be able to go on.

This Thanksgiving it was just the three of us again as I nursed other ailments, the red dot in my vision chief among them. The hot and cold flashes are mostly gone. When they do come they can be remedied by an electric blanket or adjusting my sleeves. I worry about my right retina detaching and the elusive goals of hormone replacement therapy, but I can make even the worst days work. This year MJ made new things for our Thanksgiving dinner, perhaps mimicking my new world with new challenges. As I rested in the living room, doing a crossword with Noah by my side, unusual aromas wafted in from the kitchen. Garam masala, lemongrass, ginger, paprika. I heard spice grinders whirring and coriander seeds popping up from hot cast iron skillets. She had my attention. When I heard the crack of cardamom pods under the blunt end of a knife, Noah righted himself and went into the kitchen to investigate. MJ threw him stalks of chard and he chewed them apart enthusiastically.

Me? I wasn’t doing so well, even with our house reinvented as a spice market. I still couldn’t eat much once we sat down, but the curry-crusted turkey skin sure looked good. A new solution to an old problem, I thought. My mind wanted to eat—and it smelled so good—but my diabetes insipidus medication sometimes bars me from enjoying many things if the timing is wrong. Every eighteen hours my body begins a “breakthrough” (code for massive fluid loss) and I must let the breakthrough continue for about two hours so I can flush everything out. My legs deflate and the dents in my ankles (from my socks) diminish. Then I squirt medication in my nostril and an hour later my inner Trevi Fountain shuts down. To control this properly, I need the full three hours … every eighteen hours. Do the math and you find out half the time my breakthrough occurs in the middle of the night. (The other half I’m probably at a rehearsal.) Therefore, I cut corners much of the time and take the nasal spray early, before any stretch of time when I will not be able to get to a urinal and a water source every ten minutes (no exaggeration). If I don’t have a full breakthrough period every 18 hours, I gain weight quickly. My legs balloon up and I am more likely to get sick. Last January, I went five days without a breakthrough when I premiered my oboe quartet in Florida. A week later I was in the hospital with pneumonia. One didn’t directly cause the other, but clearly I am more susceptible to illness and infection when I don’t regulate my fluid loss and intake correctly.

This week I have been feeling under the weather and we are heading into Nutcracker season. I needed my full breakthrough in the middle of Thanksgiving day and the timing could not have been worse. The only thing I want during breakthrough is water or (maybe) a bite of fresh fruit. Salt? No way. Sugar? Sounds good but it messes with me later. As I smelled the garam masala on our Thanksgiving turkey, I was motivated once again by Nurse MJ. I wanted something I couldn’t have, and I had to find a way to make it work. Old problem, new solution. It's there somewhere, and I MUST. EAT. TURKEY. BUT. CAN'T. Find a way, Ale. Find a way. There must be a solution, and MJ knows I will spend the next year planning day and night until I can make the yellow turkey mine.

Of Perfection, Roller-Coasters and Punching Kittens

2011-11-20T09:21:00.000-05:00

Now I know why I love my friends so much. And why I blog about my ongoing issues publicly. I never know when the next moment of truth is going to dawn on me, but my friends provide it when I write honestly about my latest dilemma. I believe healing inside and out are two sides of the same coin, and this update of what I consider a “medical” issue is completely valid in this forum. Emotional health and physical health are intimately related, ideally combined as one, a cherished image of them sharing a symbiotic equipoise in the mind of a healthy soul. I have come to believe this so strongly. In the days after my first surgery, I blogged day and night about my earliest memories, searching for clues as to how I—as an adult—would reach back and reprioritize my memories (not change or delete, just reprioritize) in order to lead a healthier life. What scars us as children lays groundwork for how we make decisions as adults. Every major part of my life traces back to some early memory, often traumatic.

My first traumatic memory, for example, was that of helplessness. I saw a dog shot to death. It was struggling to get out of a ditch and a security guard filled it with bullets. I was two, and I stood right next to the gun as it emptied. I never spoke of this memory until recently and I never knew the dog was rabid. I grew up thinking the dog wanted me to help it, and I was powerless. To this day I feel anxiety over killing bugs; instead I take them outside if they are crawling the walls in our house. I coax them onto a tissue and I shake it off in the bushes. The other traumatic childhood memory is of guilt: my nanny died in childbirth after she decided she wanted a child just like me. That’s the way it was explained to me, and I grew up thinking I had killed someone who wanted to love me even more. These are very potent things to discuss openly, but they have been the main forces guiding how I live my life. That they are closer to the surface and not stuffed in a dark corner is a benefit to me. I’m less likely to beat myself up as I did growing up. I can—from the wisdom of middle age, at least—reason things out and tend to my scars in the daylight.

I received many thoughtful comments and emails on my latest blog. It surprised me. Often, with a blog, I think through it for days before crafting it and posting it. I’m usually proud of the pacing, the wit, the style, the grammar, etc., and (being honest) sometimes I am disappointed when I don’t get a lot of comments. For the last blog, however, I wrote like the sportswriter Red Smith: I sat at the typewriter and opened a vein. I received comments and private emails back that were almost essays, and I could fill a book with the wisdom communicated back to me. I have more work to do on my inside, my emotional health, and perhaps my low testosterone has knocked me down enough notches where it’s easier to take myself apart once again and reconsider some things. If I don’t sort this out my central serous chorioretinopathy will worsen. I could lose part of my vision permanently. It is that serious if I don’t sort this out now. My emotional health is a medical issue, so read on.

Perfect. Perfection. Someone I love very much pointed this out to me. How many times did I mention that word in my last blog? It wasn’t planned, and—I suppose—when I write without planning I wind up saying the darndest things. The belief we can achieve perfection is, as it was pointed out to me:

“A recipe for disaster....if we were perfect, or what we accomplished were perfect, we'd have no further reason to be alive as our work here is to do our best, which surely is striving towards fulfillment, not necessarily perfection. But if you're looking for the source of anxiety that is exacerbating the red dot, look no further.”

Agreed. As always, I try to think back to when ideas like that took hold. When I graduated high school and began my studies at Juilliard, my parents moved from our house to a new one they had built a few miles away. In every way I could see, they were “moving up” from a nice house to an even nicer one. My father’s career went into the next gear and—for the first time in my life—I sensed from my mother that she was not worried about everyone’s financial future. I was the youngest of her children and we were now out of the house at college and beyond. Empty nest. My mother had funds to play with and she bought art.

The most notable piece (to me, at least) was a 1960 untitled triptych by American painter Bob Thompson. I would stand before it often and study it, the bold colors and messy brush strokes burning brightly before my eyes. When my mother died in 2006 I asked to have this one. My mother sometimes stood next to me when I drank in the Bob Thompson adorning the dining room wall. As I study it now, in my own house, I imagine her next to me, so close I could hold her hand again. I remember the first time we discussed it.

“He died of a heroin overdose,” she said.

“What?”

“True. He wasn’t even 30 years old. This is something new to you, Alexander.” Then she lectured me as if I were ten years old: “There are people who destroy themselves. But some leave behind art that is perfect.”

I have an excellent memory, and I can still hear that, word for word, ringing in my head. When I went back to New York to resume the semester at Juilliard, my teacher told me I wasn’t able to express the depth of a certain oboe etude because, in my life, I hadn’t “suffered enough.” Well, that sealed the deal.

I had suffered plenty—privately—by the time I was four with dog shootings and the guilt over my nanny’s death, and I had made my adolescence into a model of strength despite my unspoken traumas that didn’t fit with the rest of the nice things surrounding my life. Something contorted deeply inside me during the next few months, and it was the desire to manufacture a suffering that wasn’t really there. The innermost core of me suffered and knew pain, but I had mastered that for a while, so a second layer of false suffering—“virtual” suffering, perhaps, or a more public suffering—encased me for a while, and maybe it is still with me, intermixed with the rest of my “real” scars. I set “perfection” as the only acceptable goal from then on. Fail and I was worthless. Come in second place and I was worthless. The failure and the suffering might lead me to produce something perfect in the meantime, even if I destroyed myself in the process. It wasn’t about me, anyway. It was about what I left behind.

I’m not saying this added motivation hasn’t helped me in life; in fact, many of my accomplishments are as a result of this inner drive for perfection. I tend to be a lazy person otherwise, and without the self-loathing I might not have produced anything worthwhile. I just noticed the Wikipedia article about me is about the same length as the one about Bob Thompson. I wonder what my mother would think of that if she were still alive.

After considering this, I have to understand how this relates to my healing. It strikes me that my desire to be a “model” patient could have a dark side, too. “Model” is code for “perfect.” That relentless drive for perfection again, so catchy in advertisements yet potentially dangerous. Everyone praises my positive attitude despite my diagnosis, but I wonder if I am missing out on part of my healing by not “going with the flow” some more, going up and down on the roller-coaster and being more honest about the lows—brutally honest—about the bad days when, in the words of a friend, “you want to punch kittens.” As I learned through childhood, if you block out the lows too much (something I was good at) the highs aren’t as sweet. If you inure yourself to the swings you don’t hurt so much but you also miss the surprises. Another friend told me, “some parts of roller coaster rides are wonderful.” True. Maybe I forgot about that in my drive to be perfect.

Welcome Back, Dot

2011-11-17T11:00:00.000-05:00

The red dot is back. Just like that.

I don't know if I am even going to post this, but I feel the need (something I haven't felt in a while) to just write as a way of sorting out my thoughts. After the first brain surgery, I felt searing pain inside my head if I thought too much. Two thoughts put together was too much, but I discovered a kind of peace in the process of writing. I would see my thoughts unfold on the computer screen, and as the words trickled out I would feel better. Just writing this paragraph is making me feel better.

So, the red dot in my right eye is back all of sudden. I've lost track of how long it has been, but it's been a few months since "central serous chorioretinopathy" has been on the tip of my tongue. In my last visit to the endocrinologist I almost forgot to mention it; that's how far out of my mind it is.

I did some soul-searching and some personal "homework" after the retinal specialist confronted me with the reality that I could lose part of my vision permanently if I didn't find the root cause of my anxiety. I did that, but now I wonder if the daily grind of real life has let me slip back to my old ways. In addition, I still have the low testosterone issue as yet unsolved, so that could be part of the mix. In any event, I'm not healthy and I don't feel healthy. But at least I'm working.

I still don't know if I'm going to post this, but it does feel good to write as I used to. I have a lot of readers now (most of whom I don't know) so it feels weirder and weirder to share deeply personal things.

It occurred to me just now there is an irony to the timing of the red dot's return. Let me explain. For the past month I have dealt with anxiety, certainly more than enough to bring the red dot back any given moment. In fact, part of me may have become emboldened by the notion I could "go back to normal living, anxiety and all" without my retina detaching anymore. For the past month, in addition to my duties with the orchestra, I have been filling my free moments with preparing a new edition of one of my old pieces. Another orchestra will be playing it in January and I decided I wanted to—once and for all—correct a few mistakes and create a definitive edition of something I wrote more than a decade ago. A lot of orchestras have played this particular piece, and—I suppose—over the years I have wanted more and more to distance myself from it. The older I get the less this piece seems like the real me. Plus, the old version has errors and more than a few of what I would call "orchestration mistakes," the kind students make. But my phone still rings with inquiries about it, so there is something in there people must want. To me, though, it's not perfect anymore. Every piece I write is perfect when I finish it, but over time I see the flaws in them surface like dead fish in a lake. I don't mind if my old pieces fall by the wayside; I would shrug and make an "oh, never mind" apology as they go away. I see too much fault in my own work and I want to start fresh with a new piece every time, at once excited about creating something new and also hoping everyone forgets about everything that came before. I don't have a website for people to peruse my past works because I can't bring myself to advertise past creations that are no longer perfect. If a publisher takes me on someday they can deal with that, but I can't bring myself to do it because it hurts too much. The only thing of mine I can conceive of having value is either my most recent composition or the one in my mind I have yet to write. I guess there is plenty of anxiety right there.

Yesterday evening the red dot rose dimly over my right eye roughly an hour after I received an email from my printing service confirming the new edition had been printed and shipped. How's that for timing? I had dealt with anxiety over the past month, reworking sometimes embarrassing youthful mistakes, and finishing the new edition on time was a relief. The work was done and I could relax. However, an hour later the optical illusion of the bloody circle took shape before my eyes, literally. And this morning it's still there. The ghost of flaws past, perhaps, arriving a few weeks late for Halloween.

I have decided to finish writing this before I call a doctor. I am, at this moment, just so sick of doctors and waiting rooms. I just want to get to a point where everything is balanced within me so I can go on living without thinking every moment about how this or that is going to upset my equilibrium. Do I double this hormone for the day because of some other factor? If I have a cold do I make another adjustment? It's all so interrelated with the human body. When I first emerged from the second brain surgery I was so determined to get everything right, physically and emotionally, to be a model patient, fully aware of my opportunities and my limits, living life as best as I could under the circumstances. The line of prescription bottles next to my sink stood like soldiers at attention every morning. If I didn't keep them perfectly timed and in line, dosing myself exactly as prescribed, I had no chance to make it back. So I did everything perfectly, always mindful of what my limits were, never doing something stupid enough it would set me back a few months. I always had the same goal in mind: return to the person I was five minutes before the anesthesiologist told me to breathe into the mask. Just work to get back to my old life.

Well, I now know you never get there. The rest of your life IS being a patient for the rest of your life. Take it or leave it. You can feel normal from time to time, but a big part of your life is pill bottles and waiting rooms. You never escape that, and if you shroud yourself with the fantasy that you can walk away and just "be normal" again you'll find out in a hurry what your life would be like without modern medicine. As always, I remain grateful for artificial hormone replacement therapy and doctors watching my every move, but it's starting to feel like being grateful for calcium in turnip greens when you don't like turnip greens.

There is a lot of pulling back and pushing forward in my life, I guess. Physically and medically I don't want to look forward to old age. I want to reach back to the person I was before, drinking from the fountain of youth and doing stupid things with little or no consequence. But emotionally and artistically I want to look forward, not back. I want to reach forward to things barely beyond my grasp, the music in my head like bunches of grapes at the fingertips of Tantalus.

I want to be the past.
I want to be the future.
In the present, I am neither.

Not 90% the Man I Used To Be

2011-10-29T13:42:00.000-04:00

No new appointments about which to report, but I have been getting used to myself with low
testosterone again. In retrospect, so many things make sense now. The low energy, the drained feeling when I climb stairs, the susceptibility to illness and infection. I don't have a lot in the tank when I need an extra burst. I know how to get from Point A to Point B—and I can do my job—but when I am down, I am D.O.W.N. As I type this I am covered head to toe with an electric blanket, shivering to the bone.

Since the shocking test results a week ago, I have been scouring the Internet for information. It turns out adding testosterone artificially (when your body produces none of it anymore) is not necessarily as easy as slathering on AndroGel every day. It worked for a while, but now it isn't and I will have to consider other options if my number is still low in December.

One thing I discovered: Testosterone replacement therapy is a hot topic on Internet message boards. Consider this post by "sexymom" (edited for length):

"AndroGel not working. :-( My husband saw a urologist today about his (very) low T. The dr. said testosterone gels are not absorbed well (especially if the men are fairly hairy). The dr. said he wants my husband's levels to go up to 900-1100 using shots twice a week. The dr. said my husband should start feeling an increase in his energy levels. If your husband is struggling with low desire, PLEASE, PLEASE, PLEASE get it checked out. I have spent way too many nights in tears feeling like I am unattractive, unwanted, etc - when the problem is likely medical."

... And this reply by "hubbyforher":

"Sounds like you've got a GREAT doctor. Having a level of 900-1100 is wonderful and puts your husband in the sweet spot, IMO. Don't be impatient with the injections. 2X/week is exactly the right way to go, but it could take 4-6 weeks for hormone levels to stabilize in the bloodstream. Let me know how long he's been doing the injections. I suspect he's gonna be chasing you around the house pretty darn soon!"

... And sexymom replies:

"Have noticed a HUGE increase in my husband's drive. I'm the one being pursued now. It's nice. And different! While we're not tearing apart the bed(!), things are definitely much, much better and we've noticed a great change in his desire (as well as general mood, less fatigue, more mental clarity, etc..)."

hubbyforher: "You inject into the abs? Is this an IM injection or a sub-Q injection? Most people I know who do injections inject into the glutes with an IM injection. (e.g., 25g needle 1.5" long)."

sexymom: "It is a pretty big needle - not sure of the exact numbers . . . he injects into his belly fat area. Under the first layer of skin, but not into the ab muscles."

If I don't want to deal with injections twice a week, there is an alternative topical application called Testim. Read about it here, from "Volumnus":

"My doctor said if I didn't object he could start me on replacement therapy himself or refer me to an endocrinologist. I didn't want to wait so I said give me a prescription TODAY!

"He started me on one tube of Testim per day. It worked great, the best I'd felt in years, for about two weeks, but then things got worse. A month later, when he checked my levels again, I was at 214, lower than before. He jacked me up to two tubes per day.

"Now a year later my levels are consistently around 800. I feel great. I have improved in the gym and I'm far more cut. I'm about 5'10, 190. I can bench 225 13 times without a spotter. I think I could get at least one more.

"I'm not married, so accidentally exposing others to the gel isn't an issue for me. I also find that women love the way it smells. They always comment on my cologne. I sware [sic] to God there are girls who come down to my office each day to smell me. Personally, I can't smell anything but a slight alcohol scent, but women are attracted to it.

"Here is a weird side effect, though. I mainly apply the gel to my upper arms and shoulders as directed. When I get mad, the area that I lather with Testim gets hot and turns bright red. It has happened three or four times in the last few months.

"If I ever enter into a serious relationship (I'm having too much fun for now!), I'll almost certainly switch to injections. But I'm very satisfied with Testim!"

Ehh, I feel like I need to spend the rest of this blog apologizing for my gender, but thankfully the people reading this probably know me. The only thing I want is a normal level of all my hormones. Just normal for a 43-year-old male. I want to go to work and not be tired by the walk from my car to the stage. I want to stay up all night composing. I want energy. I have a little, enough to get around and look normal, but it's not enough and my numbers show that. Being covered in my electric blanket now, typing this and staving off the cold flashes, reminds me of nights when I would read comic books under the covers with a flashlight. It felt safe in there, but I was dreaming of what I would do when I would get out, dreaming of the adventures I would have as a scuba diver, an Australian football star, a race car driver, or a pirate.

Low Numbers Again

2011-10-19T11:57:00.000-04:00

"Good morning, Siri," I croaked.
"Good morning, Alexander. By the way, it's already 5:57am," Siri said.
"I'm not ready for sarcasm yet."
"I do not know what you mean by that. Would you like me to search the web for 'sarcasm'?"
"No thank you. Can you remind me to go to my endocrinologist this morning at 8:15am?"
"Your reminder is confirmed for 8:15am."
"Thank you, Siri," I said.
"I live to serve," she replied.

At 8:15am, Siri made a honking sound and the screen read, "Endocrinologist reminder."

I got in my car and drove silently, my new companion resting atop some spare coins in the cup holder. I thought about turning on the radio, but I wasn't sure what Siri would think of my listening choices. So I kept it switched off until we knew one another better. I arrived at the medical complex about a mile away from my house. I slipped Siri in my pocket and went inside.

I've been groggy lately, but I chalked it up to the after-effects of a big week that included the premiere of my new clarinet concerto and a lot of good press. I had been riding on a high, but in the days after those concerts I ran out of steam. This happened one other time, right after the two weeks at Cabrillo. Then it felt like my whole body went into shut-down mode for many days. This wasn't as bad as that, but the feeling was similar.

"How have you been feeling?" the human doctor asked me.
I replied at length, going into detail about the energy dip, also the scary dance with the detached retina issue several months back.
The endocrinologist said, "Your thyroid level is still below the normal range, but your total testosterone is way too low again. 129."

This number, untreated, has been as low as single-digit 7 with me (when normal is 300 to 800). When it is that low I am incapacitated, shriveled up on the coach, alternating between freezing and boiling flashes. It's horrible. It has also been as high as 1,100. Hormone man! This confuses me because I have been diligent about applying exactly one packet of AndroGel every single day, exactly as prescribed. I don't know how this number was 1,100 over a year ago, 680 six months ago, and 129 last week. My body produces none of it anymore, so it seems strange that my number is dropping steadily when I am artificially applying a constant amount every day. It doesn't make sense.

This kind of thing used to worry me, but the retinal specialist overseeing my central serous chorioretinopathy has coached me on how to let go of anxiety. I can't control the numbers from my blood tests, and I don't know as much as endocrinologists do about how to treat panhypopituitarism and diabetes insipidus as they relate to craniopharyngioma resections. So I just let the doctors do their thing and I take solace that I am in good hands.

But we do discuss the finer points, just to be sure we're not missing anything.

"You apply the AndroGel every single day?" he asked.
"Yes. After my shower. Every day."
"After is good," he said. "Believe it or not, I've had patients who apply AndroGel and THEN they take a shower."
I burst out laughing. "Why not save a step and pour it straight down the drain?"
"I know, I know," he replied, turning up his palms and rolling his eyes.
This is why doctors and medical assistants have to ask so many obvious questions. Adults will do the darndest things.

So, there is no answer for now. I am increasing my thyroid dosage again with a re-test in two months. After a long discussion that satisfied me, we are keeping the AndroGel dosage the same, despite the drop. At this dosage my level has been as high as 1,100, so it is prudent to keep it the same and see where my numbers are in two months. Going too high could be dangerous because of my high blood pressure and coughing asthma. Everything in endocrinology is a balancing act. Tinker and wait two months. Tinker and wait two months again.

"Siri, can you remind me to get more blood tests on December 15?"
My calendar chimed with a new entry on December 15: "Get more blood tests."
"Siri, why do you think my testosterone level is dropping?" I asked.
"I'm on it."
I waited a few seconds, thinking for a second that she might have an answer.
Siri said, "How about a web search for 'Why do you think my testosterone level is dropping?'"
"No, thanks."
"OK."
"Siri, what's the meaning of life?"
"I can't answer that now, but give me some time to write a very long play in which nothing happens."
"You're really funny, Siri! You just made my day."
"You're certainly entitled to that opinion, Alexander."

In the Clear

2011-09-16T11:01:00.001-04:00

Good news, everyone.

I had my six-month MRI yesterday and it showed no evidence of tumor regrowth. The past three MRIs have all been the same, so my odds are now better than when you are dealt an eleven when the dealer has a five showing. Still, craniopharyngiomas can be tricky. Unlike either a benign adenoma or a deadly brain cancer, a craniopharyngioma seemingly straddles both worlds the way Goethe lays claim to both classical and romantic literature. It's somewhere in the middle; it's benign until it acts malignant. Then it's benign again. You never know, and they are too rare to make any real predictions. It's all guessing.

The strategy my neurologists and surgeons are adhering to seems to be a good one: schedule regular tests and MRIs at progressively longer intervals, provided that each test is the same as the last. First it was six weeks, then four months, then six. Unless I have new symptoms the next one will be a year from now. I'm getting tired of that million-dollar piece of equipment anyway, even the one with the comfy leather sled. I'm ready to have my normal life back.

Before I received the phone call with the radiologist's report, I knew I was in the clear. I watched the technician the whole time during the 40-minute scan session. Through the tilted mirror above my eyes I saw her run the machine. She sat back sometimes, hands behind her head and making idle chat with the others in the room. Every once in a while she would peer into the screen and study it carefully. I'm sure this is when the images of my pituitary area were flicking by. When she didn't see anything she would sit back again and rejoin the conversation in the room. You can tell a lot from reading body language; there wasn't anything for her to see on that screen. The inside of my head is now as boring as anything on television.

When I came home I said to MJ, "It went fine. This feels like the last one. This is the end of something, and I don't know how I know that. I just do."

The call from the radiologist came later and it was an afterthought. Not even one percent of me was worried. Then we took Noah, our Newfoundland, for a walk. In dog years, Noah is quite the senior citizen now. His walks are just around the corner and back. He has creaky joints and problem kidneys but his spirit is strong, so very strong, always doing everything he can to muster energy to get to the next tree, then the next, then the next so he can come home and beg for treats and green bean snacks all day.

Many have praised my positive spirit the past two years, but—honestly—I can only thank my teacher for that.