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Sunday, November 29, 2009

Hot Flash / Cold Flash

I have figured it out.

My hot flash problem, that is. For anyone facing massive hormonal imbalance following two brain surgeries, here is the cocktail:

Both socks on, pushed down to the ankles.
Very light sweatpants, both legs pulled up to the knees.
Zippered, hooded sweatshirt open and draped over back (no arms).
Wool cap with Detroit Lions logo.

That’s the perfect mix that will keep hot flashes in check. The bad news is you will feel the same as a good Chassagne-Montrachet, meaning you will be lightly chilled. You will want to warm up just a tad more but DO NOT! If you “give in” to the chill and add a blanket, set your stopwatch and in three minutes you will feel your legs melt, then an eruption shoot up your torso and out the top of your head. Your hands will get hot and your head and back will be drenched in perspiration. You will have no choice but to throw the blanket off, throw the sweatshirt off and pull your socks off. Four tortuous minutes later, the perspiration will evaporate and you will feel a sudden icy breeze blow through your body wildly. You are now close to freezing to death. You will be tempted to seek relief by covering yourself up again BUT WAIT! If you do this, you will have another heat eruption in three minutes. INSTEAD, cover just one leg. Do this carefully. Do this slowly. You will still be freezing, your hands will be shaking, your teeth will be chattering, but do NOT overcompensate for the freeze. Be patient and wait one minute with just the one leg covered. You will feel slightly better. Now, as your temperature begins to rise, S.L.O.W.L.Y. move the blanket off so only half of one leg is covered. You will continue to warm for the next minute. Now take the blanket off completely. If you are lucky your body temperature will rise a little more and (pray, pray, pray) stay there. You are not freezing anymore. But you still will be lightly chilled. Don’t move. This feeling right now is as good as it will be all day.

I did call my surgeon this morning because my condition in this regard is worsening, bordering on the totally ridiculous. I decided to call him because I was researching online and found (to my surprise) that my symptoms could be not just for my hormone zoo but also for a brain and central nervous system infection. This—I read with increasing interest—is extremely dangerous and often deadly. So I decided to dial my surgeon’s number. After all, he is taking my rare papillary craniopharyngioma to “tumor board” next month, and he’d probably feel bad if he had to end his presentation with the news that his patient—er—kind of died on him. So for his sake I decided to call him.

The good news is I (very likely) do not have a brain infection. There are simply too many symptoms I do not have (nausea, vomiting, spinal cord fluid leakage out of my nose, etc.) for it to be a real possibility. The surgeon on call decided to consult with my own surgeon, just to be very sure. He called me back and concluded, “You also don’t SOUND like someone with a brain infection. People with infections—and I’ve seen many—just have a way they SOUND.” As a musician, I appreciated this bit of intuition and candid confession from someone who is supposed to do everything ‘by the book’ with clinical data. If I wanted to be absolutely certain, for example, I would need to have a blood test and a spinal fluid test. Blood tests are easy enough, but the only way to test spinal fluid is to get a sample of it by inserting a big needle deep into my spinal cord, drawing fluid out and waiting several days for the test results. My symptoms are instead completely consistent with hypothalamus gland issues. This gland regulates body temperature and this is a common problem following my particular surgery.

Much of the day, it appeared to MJ I was “sitting still” but I felt just the opposite. I was in fact very active mentally, involved in the second-by-second unfolding of an internal drama starring “Hot” and “Cold” as competing Oscar contenders inside my body. Which one is about to sneak up on me? If I waited a second too long before ripping off my cap or my socks, God help me for the next fifteen minutes while I rebalanced because I was already way past exhausted. I resorted to sitting upright on the couch most of the day, eyes wide open on alert, sensing for the tiniest clue that something might go wrong. Try to picture Don Knotts guarding a haunted graveyard and this is about the right image.

I learned to recognize the signs of when I was about to explode and when I was about to freeze. Then I “taught” my hypothalamus gland how to react. I’m not a doctor, but it feels like my hypothalamus gland (about the size of an almond) was nicked or knocked silly during the tumor removal like a boxer hit too many times before the ref stopped the fight. The gland is speaking gibberish. Now it is my job to be the trainer. I need to slap this boxer a few times, splash cold water on him, give him an inspiring speech and get him ready for the next fight. (Cue Rocky theme.) Maybe someone else would throw their hands up, go to a doctor and say, “Fix me” (I'll be seeing an endocrinologist soon anyway) but my gut tells me this is just like my other brain functions that have been reset after surgery. I simply need to get a grip, find something to hold onto and lay down basic building blocks using survival instincts. Sometimes you need doctors to do the fixing and sometimes you need to look deep inside. As the surgeon told me today, “You know, this is no different from hot flashes women go through during menopause. Get used to it. Now you can tell them you have been there.” He cackled, which relieved me. I knew this was just a normal part of life.

Well, a little unusual for a 41-year-old male, but—then again—when is anything usual for me? Bring it. (Cue Rocky theme again.)

Thursday, November 26, 2009

Thanksgiving Rambling

As MJ, Noah and I enjoy a quiet Thanksgiving alone (I am too unstable for anything else this year) I take solace in the healing power of writing, knowing that my loved ones will be reading my intimate thoughts (as random as they come). It just feels good to write.

I am noticing my rehab from the second brain surgery is different from the first. The first rehab—and now I am sure of this—gave me an almost clarvoyant ability to see into my past. I had an uncontrollable urge to write very old memories down. I feared if my fleeting thoughts were not captured in words I would never know certain things again. Memories were escaping my head and I had to snatch them out of the air like fireflies.

This time I feel more measured about things. Having been through the second (more painful) surgery followed by a step down in hospital care, I am pacing myself, conserving energy. I think more within my own head but I still have the desire to write and communicate to others. My cautious intuition tells me a third surgery could be around the corner, possibly very soon. My tumor is as rare as they come, and there is little explanation for anything that has happened so far. I can’t believe I am preparing for the possibility of going under the knife again, but somehow my body “knows” this is going to happen despite the complete removal of the tumor. I can just feel things happening in my head and something is not right.

My vision did return following the second surgery. (For those of you new to this blog, the tumor was expanding between my two optical nerves, beginning to blind me and causing massive headaches.) But yesterday I tried some basic vision tests, judging light and color saturation. My left eye (the problem eye both times) is now underperforming again by 10-15%, as best as I can tell. Two days ago, it was underperforming 5-10%. Things are getting worse. There could be an explanation, though. I have been somewhat active and maybe that is the reason. But all I can do is spend time on the couch and rest. I hope this small setback is simply a blip.

The other frustrating thing is my pituitary gland. It had been squished (and then re-squished) by the tumor. In layman’s terms, my gland is now going beserk. I have already consulted an endocrinologist (with more tests to come), but for now I am battling diabetes insipidus. I have massive fluid losses and fluid gains as my body seeks the correct balance of sodium and potassium. I have a hormone-replacement nasal spray that corrects this, but I am still tinkering with the dosage.

My pituitary gland also controls testosterone production, and prior to my first surgery my testosterone measured at one-eighth the level of a normal male. Currently, as my gland figures out what to do, my body is changing in a way I have not felt since puberty. I am forty-one but nothing feels stable. It drives me C.R.A.Z.Y. I have severe hot flashes (intense sweating) followed by bouts of bitter freezing. I am constantly adjusting to keep myself at a medium temperature, like I am balancing on the middle of a see-saw. I try taking off one sock, unzipping my sweatshirt halfway or pulling up one sleeve to my elbow. Tweaking, tweaking and tweaking. If I get it wrong the hot flashes stay for minutes that feel eternal. These are followed by deep, teeth-chattering freezes a moment later. You can find lots of information online about hot flashes in women, but the information about men is thin. I read this morning that hot flashes occur if men have extremely low testosterone or have recently been castrated.

The headaches come and go with similar intensity. Sometimes lifting my eyebrows causes a searing pain deep behind my eyes and then a shooting sensation down the back of my neck. I have a few days left of standard pain pills that help a little, but after that I don’t know what my options will be. I cry openly. Sometimes tears stream out of me for no reason at all. I am a mess, but I have MJ and Noah with me to clean up the mess. Yesterday in particular was unbearable, and at one point MJ just held me to warm me up during a cold flash. Noah wanted to help too, so he nudged his giant head between us and licked me over and over.

All my life I have seen humor in things, and this is no exception. Quite seriously, I find my predicament hilarious. I can envision an HBO sitcom about my ups and downs following brain surgery. (But who would play me? Daniel Craig would be the obvious choice, but he would have to buff up for the role.)

The first time I felt different things in my body we were living in Caracas in the late 1970s. I was eleven. Our house—like most houses in our neighborhood—was a virtual fortress. Iron grates were bolted to every window. Exterior doors were solid steel with double locks. The one time my mother forgot to lock her car in our driveway someone tried to steal it. We were allowed to ride our bikes outside and we had a small backyard with mango and banana trees, but for the most part we stayed indoors. For long stretches, especially in the summers, we had nothing but books and our imaginations.

To back up a bit, there was a vibrant community of ex-pats in Venezuela, and we were able to construct a social life with a familiar ring. We had many American friends and we visited other houses regularly. On certain days we spent afternoons at a country club where many of the people were American. We went to a school where the majority of the children (and the teachers) were American. But the standard entertainment we take for granted today was limited. We had a television set, but the only live TV I remember watching for two years was “Space: 1999” dubbed in Spanish.

Then one day my father brought home a Betamax and everything changed.

One enterprising young man came up with a system where he would tape TV shows and movies in America and circulate them amongst famlies with Betamaxes, charging us a small fee. Every week he would deliver four new tapes and collect the four tapes from the previous week. It was, in essence, a crude Netflix for ex-pats. You never knew what you were going to get. Episodes of “Laverne & Shirley,” the mini-series “Roots” or a pirated movie. It was not perfect, but it simulated American family entertainment inside our iron fortress.

All this time I knew I was growing up, too. My body was changing in ways I can relate to today. I began assessing the girls in my class. One day we climbed the mountain outside Caracas called the Avila with another American family, and I felt strange bursts of energy. At the top of the mountain the exhausted adults took naps and I continued to explore with the other kids. The family we were with was in the rotation of Betamax tapes, and we received tapes they had watched the week before. Once we were a safe distance from the adults, the oldest of their sons informed me about a movie we would be getting next called “Marathon Man” starring Dustin Hoffman.

“Be sure to watch that one,” he informed me. “It has a nude scene.”

I had heard about nude scenes from other kids at school, but I had never seen one. In this day and age a growing child has endless options for placating his or her curiosity about salacious subjects. But before the Internet, before DVDs, before VHS, before Betamax (and if you father and none of your friend’s fathers had certain magazine subscriptions stashed) you were officially out of options.

When my family sat down in front of the TV after dinner the next week, we looked over the four new tapes that had just been delivered to our house.

“What should we watch?” my mother asked.

I made an impassioned plea for “Marathon Man.” My family agreed and I snagged the chair closest to the TV, explaining that I needed it because my eyes hurt. The tape went into the machine. My father pressed PLAY. The movie started.

I watched intently. There was a car crash at the beginning, something about an old Nazi. Then Dustin Hoffman was jogging. Then Roy Scheider was in it. Finally, Dustin Hoffman met a woman. After some scenes with an older actor (Laurence Olivier, I later found out), there was a part where the camera followed trails of clothes strewn across the floor until it came to Dustin Hoffman kissing the woman on a bed. He stopped kissing her and rolled to his side.

There she was.

I froze. No one in my family said anything. I didn’t breathe. I watched the screen while Dustin Hoffman and the woman talked. I pretended like it was just anything else. Then the scene was over. I watched the rest of the movie, hoping there would be something similar, but that was it besides the infamous later scene that scared a generation away from dentists. I secretly returned to our Betamax many more times that week, soundlessly watching the scene and discreetly putting the tape back on the shelf. I wasn’t sure why I was doing this, but something inside me compelled. I was eleven and—just like myself today—the inside of my body was a war zone as my hormones rebalanced, trying to figure out what I was to become.

Wednesday, November 18, 2009

Pre-op experience (2nd surgery)

I will make a quick update on my status, then also recount a little of my pre-op, drawing some interesting contrasts between the two big downtown Grand Rapids hospitals. I have the unusual perspective of going through two similar brain surgeries on two consecutive months.

First, my status. I'm bored. There is still a lot of rehab in front of me. I underestimated (or simply forgot) how long the hours are I must confine myself to the couch. It was only a month ago I was recovering for the first time, and already I have forgotten what these long stretches are like. (It's amazing how the mind can block out things like this.) But fear not: I am doing my part staying horizontal. No scolding please!

I am entertaining myself with John Hailman's "Thomas Jefferson on Wine." Very well researched, but also accessible for the lay reader. Also in my stack is Dan Brown's "The Lost Symbol" (half-read), C. S. Lewis's "The Great Divorce" and Pierre M. du Bourguet's "The Art of the Copts," all of which I will finish in the next week in between sessions of composing "The Couch of Eros." I have plenty to do. I just need to remain in one place.

I had my first "outing" since the surgery as well. Same as with the first neurosurgery, MJ took me to a bookstore. The first time, I bought thank you cards and a Blu-ray disc of "Casino Royale." This time, I went straight to the DVD section. I bought a Blu-ray disc of "Quantum of Solace." I told MJ that despite times being tight I am allowed to purchase one James Bond DVD every time I have brain surgery. She couldn't argue with that even though the special edition of "QoS" was a whopping $39.99. I will watch it several times to help the healing of my pituitary gland.

One final status update before the hospital story: my Diabetes Insipidus is indeed real, and when I forget to take the hormone nasal spray it upsets my body's equilibrium. This morning I felt fine until I suddenly found myself going to the restroom 4 or 5 times in one hour, draining off massive amounts of liquid. This led to an intense thirst to offset the relative rise in sodium in my body, and—to MJ, she tells me—it looked "scary" how quickly I was glugging down large glasses of apple cider and ice water to quench this sudden uncontrollable thirst. An hour later (and after taking the nasal spray) I am stable again for the next 18-24 hours. But this is likely how the rest of my life will be if I don't stay on top of the hormone replacement therapy. But I'll still take this over a brain tumor. Believe me, I'm as happy as a razor clam.

Some readers may remember the story about my pre-op moments at St. Mary's hospital in downtown Grand Rapids a month ago. I was nervous about the remote possibility of an emergency craniotomy and waking up with Frankenstein stitches across my forehead. The kindness of the pre-op nurse and the pleasure-dealing anesthesiologist doling out fentanyl put all that to rest, and I experienced a joyous time, laughing it up with the nurse, MJ, and a friend. Under the influence of this serious drug, we dreamed of buying a boat and raising llamas. My first pre-op session was great. Just delightful.

This time, at the other main hospital downtown, everything was off. We arrived on time for the pre-op CT scan, but were told (incorrectly) we were in the wrong place. So we were escorted to a different part of the hospital, checked in, waited, waited, then were scolded for not being where we had originally shown up (despite our repeated explanations to the staff of this looming error). My IV was started sloppily and painfully. Early lab tests were done out of order, and I sensed some in-fighting between the different departments of the hospital. (This could also have been my imagination.)

When they wheeled me into the pre-op area, I had to use the bathroom but was told to wait. Just as I was allowed to get up and use the facilities, the anesthesiologist arrived. I told him I had been dying to go and could he wait just one minute until I got back. He was an older gentleman, unlike the young and passionate whippersnapper from the first surgery, and this second anesthesiologist did not like the idea of waiting. But he did.

As I returned, he sighed with his displeasure and rushed through a series of questions about possible allergies to medicines.

"No allergies," I said. Then—as sort of a joke—I added excitedly, "Especially not fentanyl!"

As a "good" kid all my life, I never dabbled in street drugs or even alcohol. Once, in high school, our class had one of those guest lecturers at an assembly warning us about "peer pressure" and drugs. He was speaking of parties, how they got out of hand, and how good kids like us found ourselves staring down the wrong ends of crack pipes. The lecturer opened the floor and asked us to speak freely about the pressures we felt. The first boy to speak—someone across the room whom I barely knew—said, "We could all go to the kinds of parties Ale goes to. Then there'd be no problems!" The assembly erupted in laughter. It was the first time I detected there might have been some serious lurid fun I had been missing.

Serious fun I had now earned the right to enjoy.

I had been focusing on this moment before surgery for the past week. It was to be a guilty pleasure just like my annual purchase of PĂ©rigord truffles every Christmas after the barrage of Nutcracker performances.

Hard work, stress . . . reward.

Honestly, I was looking forward to another experience with a powerful painkiller like fentanyl in a protected environment of a hospital. Anytime I found myself filled with panic leading to this second surgery (and this was often) I took solace in the private satisfaction that I'd be getting more of this great stuff, if only for a few fleeting minutes. It kept me going, and the mere thought of it kept me calm. It sounds terrible to think of anything that way, but if anyone questions me on this, give me a call after your second brain surgery is scheduled in as many months.

"Well, you're not getting fentanyl," the anesthesiologist told me flatly (and somewhat sternly) after he had waited five minutes for me to get back from the restroom.


"I'll give you—" and then he mentioned something I didn't recognize. The way he described its effect, I think he settled on something like over-the-counter Tylenol, only milder. He injected this into my IV (which was already haphazardly inserted in my right hand), so the drug burned as it entered my vein. I felt nothing, then some nurses wheeled me into surgery.

In the surgical room, the familiar bright lights flashed and the intricate equipment bleeped and whirred. An impressive array of high definition video screens showed my brain from various angles. For a moment, I was embarrassed all this was set up for little old me. I hopped across onto the operating table, not wanting to hold things up.

"Are you cold?" a nurse asked.

I was.

"Here's a blanket that will help," the nurse said, kindly.

I warmed, and my mind drifted to MJ in the waiting room. I do love her so much, and for some reason in that moment I wanted to hold her hand so deeply. I didn't care a whit about any stupid drugs. That was such a silly thing to begin with. I wanted to hold my wife's hand. I wanted her to know how much I loved her, right at that moment.

Someone put a breathing mask over my mouth. He said, "Breathe deeply into this. Don't worry. It's just oxygen."

This, I knew from the first surgery, was a lie. It was not "just oxygen." Perhaps—technically—this was true for the first ten seconds. You breath oxygen deeply, and then suddenly a lethal gas is cranked that knocks you out. I was not about to be fooled again, because I had unfinished business before I wanted to go to La-La-Land.

Maybe because I had flashed on my wife's hand like that, I flashed on one other image, from the extraordinary 1982 film "Koyaanisqatsi," directed by Godfrey Reggio with music by Philip Glass. As famous as the film is amongst fans of (musical) minimalism, I have always been most taken with the great cinematography by Ron Fricke. The choice of shots—most notably the framing—always gets to me. In particular, one brief shot stands out for me every time: a hospital bed with a patient's vulnerable hand grasping the rail. There is all this sophisticated equipment and tubing around, but there is another hand in the shot too: it rests upon the patient's hand. From one way of looking at it, things seem cold and impersonal, as if asking how a flesh-and-blood creature could survive (or would want to live) amongst all the inhuman technology. But I always see that shot as just the opposite: in our moments of deepest dependence upon technology, a hand, a simple hand holding another hand has more power than anything else.

I needed human contact before being sent off for four hours of complex neurosurgery. I needed something personal. A moment. A connection with someone. A person. The desire was overwhelming.

"Breathe into the mask," the voice urged me. "It's easy."

"Here's the fentanyl you wanted," the anesthesiologist said from the other side.

"Wait, WAIT!" I cried. "Just wait. No fentanyl. No mask. One second, PLEASE." I looked desperately around the stark white room. There had to be at least ten people in there with various jobs to do. I was looking for one person.

My type of neurosurgery is shared between a team of two surgeons. A brain surgeon removes the tumor and an otolaryngology (ear, nose and throat) surgeon makes the initial approach as well as the closing up. It just so happens the ENT is my neighbor. We're not close, but we do know one another on some personal level. I wanted to see his face before going under. I asked for him and was pointed to a corner of the room.

He was sitting in a chair, studying the screens. He had done this particular surgery over a thousand times, and in fact had pioneered much of its use in my city. He looked confident and focussed. I waved to catch his attention.

The voice above me said again, "Breathe into the mask now."

"Wait!" I said again.

This time my neighbor saw me. I waved at him. I gave him the "thumbs up" sign. I said, "Are we going to make this a good one?"

"The best," he said across the room and pointed his thumb up back at me.

It was the human connection I craved, and something inside me relaxed. I laid back on the table, closed my eyes, took a few deep breaths into the clear mask and opened my eyes a moment later in the recovery room.

Sunday, November 15, 2009

Roommate's Departure

My alcoholic roommate (introduced in the previous blog) checked out of the hospital the day before me on his own accord. His female companion had vanished for a few days, but now she was back.

The nurse, a charming Caribbean woman, said to him, "A new life for you now? No more drinking?"

He replied, "Well, I feel better. I need to get home."

The nurse said, "Your condition is very serious. No drinking!"

"I'll try. Completely stopping could be hard. But I'll try."

A doctor came in with a number of forms and pamphlets. The doctor, who had a thick Indian accent, said, "You have cirrhosis of the liver, and also hepatitis C. These treatment programs are extremely important if you are to survive. You can be in-patient. Very important. You will do it?"

"Uh . . ."

"We sign you up for in-patient now? Very easy. No cost."

"Out-patient. I'll call the number once I get out."

"Okay," they said, then stuffed the pamphlets in his bags. I had been witnessing a four-day intervention and stand-off up until now. The doctors had lost, and this was good-bye.

As for myself, I had been waiting for this moment. I knew I could make a difference in my roommate's life and my moment was growing near. I knew what my roommate looked like from the few times he passed by on the way to the bathroom—tough, tattoos, scars, beard, leather, long hair, mid-forties—but aside from incidental contact we knew nothing of one another.

His name was Larry. I knew that.

As he would pass my bed for the last time, I would say, "You going for good, Larry?"

He would be surprised at my interest, or that I had bothered to pick up on his name.

"Yes?" he would stop and say.

"Larry, I know this is none of my business, but these curtains are thin," I would continue. "I try to mind my own business, but I can hear things. You can tell me to shut up, but you've been a respectful roommate and I'd like to share one thing, take it or leave it. I don't care. But only if you don't mind me saying."


"Larry, no one can make you do anything. Only Larry can decide what Larry is going to do. I just wanted to stress that now you know the facts. You don't know me from anyone, but I swear to you these people aren't exaggerating. Even if you hate their guts and resent them coming at you from their high horses, acting all superior and telling you how you should live your life. They are being truthful about your future, even if you think they don't care."

At this point, I imagine him sizing me up.

I would continue, "If you want to live, you know what you have to do. There's no other way. Stop drinking. Don't do it for anyone but Larry. Just you and Larry, on your own. I imagine you have felt alone your whole life, deciding how you want to do things, making a protected space around you where no one else gets a say. But just make sure Larry gets what he wants out of life. Live, die. It's your choice, Larry."

But as this moment actually unfolded—and after the scores of times I had rehearsed it in my head—he rushed by me so quickly I didn't have a chance to open my mouth. Until now, he had always made a passing gesture to me, a kind of, "Hey, how's it going?" as he went by in various vulnerable states of undress on his way to and from the bathroom. But now he was fully clad in layers of leather, belts, a hat and dark sunglasses. He was a modern-day gladiator, stoic and unresponsive to any nuance from the outside world.

He didn't look once in my direction and shot right past me.

That was that.

The night before, things had come to a head between Larry and the staff. By then he was cleaned up, and the writing on the wall was for him to leave the hospital and check himself into an alcohol rehab program. He didn't want to go and the Indian doctor came in for yet another examination.

The doctor said, "You are stabilizing. Good. So, scale of one to ten, how is your pain?"


"Ten? On the first night, you were vomiting, writhing in pain, almost dead, and you said that was an eight or nine. Where does it hurt?"

"My stomach. My head. My back."

"You never mentioned your back before. Your back is a ten?"

"Yeah, back's been a problem for a while. I'm in extreme pain," Larry said as he stood and paced.

The doctor said, "Your case is confusing. Perhaps we need another procedure to drain more fluid, but your stomach is not distended anymore. Another procedure will be painful . . ."

"I'm in pain now! Look, dammit! I can be here for tonight, if it's just for tonight. Normally, to deal with pain I drink, drink, drink and drink, okay? But you don't want me to. So I'm not drinking, okay? I'm sober. But I need relief now, just for this one night." He added, "Please." After another pause he finished with, "I'll go tomorrow."

I heard a long silence on the other side of the curtain, then the doctor left.

After that, everything changed. Every two hours, nurses came in with a parade of pain medicines for Larry. He decided to take a long hot shower, his first in almost a week. He ordered coffee from the nurses, and they brought him fresh cups steaming with lots of cream and sugar. He left his dirty clothes in a pile and put on crisp hospital scrubs. He lay on the fresh bed linens, switched on the TV, watched cartoons, laughing, hands behind his head. He did this all night. He dozed off sometimes with the volume on high, not allowing me to sleep. But all night, like clockwork, the nurses kept bringing him coffees, pills, and syringes. There was an unspoken agreement amongst everyone, even me—it seemed—regarding what was really going on.

We were all here to give Larry what he thought he always wanted in life. This was Larry's chance to live it up like the other side. Finally. No haggling. No scraping together money to blow on booze. No begging for places to sleep. This was Larry's night. Despite my own splitting headaches, I put in earplugs, covered my face with a pillow, didn't call the nurses and slept for twenty minutes at a time. When I would be jolted awake by a laugh or an a bed alarm, I would gingerly turn over, reset the tubing from the needles of my spinal tap and cover my head again to try for a few more minutes of sleep.

On some level, this felt very wrong, but on some level it also felt very right.

By the time morning came, Larry was hallucinating about spiders under his skin, and he screamed every time the nurses woke to give him more drugs to alleviate his "pain." Larry decided he didn't need another procedure after all. He packed to go.

Larry's body was attached to an alarm that bleeped raucously anytime he left his bed during the night. This was frequent and erratic. I had slept very little because of this, and at one point—completely frazzled—I opened my laptop and began composing. I picked the most serene combination I could imagine, the same instruments from Debussy's famous Sonata (flute, viola, harp) but used the rhythms of Larry's annoying beeping alarm as a jumping off point for creative energy. For some reason, I instinctively titled my piece, "The Couch of Eros," after a fictitious work of literature referred to in a Tom Stoppard play I love.

For the rest of Larry's final day, he acted more and more odd, a bomb about to blow.

"These drugs don't work anymore!" he shouted. "They make my skin crawl."

"The nurse said, "Yes, after a while that happens with painkillers. But your pain is very intense so we must treat it."


He had been a respectful roommate until now, but the seams were coming apart. I must say it scared me. I was attached to my bed via spinal needles only a few feet away, protected by nothing more than a thin veil of fabric dangling from the ceiling. Being from the "good" side of the tracks all my life, I wondered if Larry might snap, reach through the curtains and take me hostage, but these are things only my imagination can conjure with no experience to back it up.

Larry's big night of excess was over. He knew it, we knew it, and now he had to pay the piper and get on with his half of the deal for the sake of the rest of us. I suppose like a Biker-Man-Madame-Bovary he wanted everything in life to be an explosion of wonder coming his way. When it didn't happen, he blamed everyone around him. He never learned that the greatest things in life—in fact, the only things of any value—are not the fancy things others appear to covet but rather the simple, meaningful experiences you create from your own heart you share with the people whose love you have earned. That's the best part of life, and it is as extraordinary as it is simple.

I feel genuine empathy for Larry, that he is probably half-way inside a bottle of Jack Daniel's by now, drowning out the shakes created by his painkiller and coffee binge. I feel a deep remorse for his likely circumstances as a child. He certainly never got to attend a private, uniformed grade school in Melbourne like me, have a pet cockatoo, have a set of concerned parents trying to show him how wonderful and varied the world is and how to reach his ultimate potential. But then again, I have known a lot of privileged kids who have "blown it" big time, wasting opportunities handed to them on silver platters. Likewise, I've known people like Larry who have, despite all odds, pulled success out of their hats, finding some seed inside themselves which would not let them fail. There is no certainty for success or failure in life.

But the Larry I got to know through the voice on the other side of the curtain lying to the doctors was not, I am certain, a man on the verge of changing. His patterns had been engrained long ago, and whether I had been able to stop him for a moment to say good-bye would not have make a whit of difference. This was, as best as I could deduce from the serious tones coming from the doctors, the real end of the line for Larry. He had one final chance to decide whether he wanted to be here among us. He made his own decision, the same one he made for himself at some juncture a long, long time ago.

Thursday, November 12, 2009

Roommate #1

Though my hospital roommates will not be written about in the order I have encountered them, I know in one way or another I want to share things about what I have learned in a general way without divulging anything personal in order to have energy and time to write during my long recovery.

I have minimal energy here; mostly napping in extreme pain or discomfort, and I have little in the way of mental fortitude to even form thoughts. I simply want to survive each night. It is hell; there is not another way to describe it. I want to be home with my wife and my dog. Most of the the nurses are godsends. Some are airheads and forget basic things. Some are downright mean or vindictive. It's just like anywhere else in the world. I am grateful for the good nurses—and they come in all different, unexpected ways—but everyone has their strengths and weaknesses.

But for now, as I have to lie awake with one arm totally straight, letting an anti-meningitis medicine seep into my blood for the next hour, I feel lucid for the first time in days and am going to write random thoughts about my current roommate.

He is an alcoholic, admitted from the street into my room because he is about to die. I can't see his face, but his voice is only a few feet away from my cot, just behind a privacy curtain. I hear everything he does, and in the past two days he has done everything with an air of respect for our surroundings. He keeps his voice down. He whispers to me politely if his nurse button doesn't work. He keeps the TV volume on the minimum. When he vomits he apologizes and gets it cleaned up as quickly as he can. He is—quite seriously—a considerate roommate whom I appreciate and care deeply about.

Within an hour of his admission, a doctor specialist visited him.

"How much do you drink a day?" the doctor asked.

"A twelve-pack, plus a fifth of Jack."

"How long?"

"Since I was a teenager."

"Have anything this morning as an eye-opener?"

"A rum and coke."

"Do you worry about what others think of you?"


"Have you tried to stop before?"

"A few times."

"Do you want to stop?"

"If I'm gonna die, I guess I should."

"Look," the doctor said. "This is pretty much it. Your liver has taken all it can. If you don't stop and change many things—and soon—you will die. No joke this time. This is it. I'm not here to judge you or tell you what you should do, just make sure you have the right information, plain and simple, right in front of you so you know what is going to happen if you continue drinking. I advise most of my patients in this situation to stop drinking. Most don't. Most die, and no liver-drinking-disease-death is a pleasant way to go. It is ALWAYS a horrible death."


"Now, as a miracle of life, it just so happens we don't need our entire liver to survive the rest of our lives, even after a lifetime of drinking. It can be done, but not always, and this is a miracle of the human body. If you stop, get help and eat right, you can live—and live quite well—but this will be your choice going forward—your choice—about how your life or death will proceed."

"What about getting me a fresh liver, like a transplant to start all over?"

"In your condition that would not happen. Actually, there is no way you should count on any fresh, healthy liver standing a chance of being transplanted into you. You need to be totally dry for six months at least, and you don't have six months. There are too many people who have been waiting for months or even years, playing by the rules exactly, waiting for a liver transplant. Don't think of that as a way out of this now."


The man's wife or girlfriend—who had been with him this whole time—now spoke up. (I couldn't see her, and she had been quiet.) She said, "You know honey, I can do this with you. I'll quit."

"Naw, you don't have to."

"I mean, if you think it will help."

"I can do this on my own."

"But you haven't been able to do it before."

"I know. But it's my deal, not yours. You can drink in front of me if you want. But if I want to live I guess I have to do this; find a way to quit once and for all."

The doctor, with many other patients to see on his rounds, stood up to leave. He said, "I'll see you tomorrow and a few days after that. We can talk about different options and ways to pursue this. But I want you to be sure you know the hard facts going forward, and what is truly at stake this time. Giving up a daily habit you've had for decades—being it picking your nose or drinking yourself to death—is still a habit, and it will require real changes that can only come from within you. In the end, no one can save you from death except yourself, and you need to decide if you want to live and want to be here."


The doctor left.

I had been pretending to be watching television or downloading apps on my iPhone as the doctor passed by my sectioned-off area, but he didn't look in anyway.

I waited for the inevitable moment of clarity between my two roommates where they would embrace each other in tears, saying, "Oh God, my love, this is it, isn't it? I'm going to change for you now. My life has been a waste. I'm going to be a better man now. It will be the hardest thing I've ever done, but I'll do it for me first and I'll also do it for you."

But he didn't say any of that.

She didn't say anything either.

I suppose I appreciated their honesty. The whole conversation with the doctor, I guess, was not new information to them.

I heard the TV click on wordlessly, the remote beeping as it scanned through channels, settling on some familiar crime scene investigation show re-run.

After a full thirty minutes of the TV show, he finally spoke: "Well, now we've been told for sure it'll definitely be this or that. We can't say we ain't been told there's some in between still left we can try for. And we know this ain't no joke anymore."


Friday, November 6, 2009

Caring Bridge Website

For the next few days, MJ will be posting updates on my progress concerning the second attempt to remove my brain tumor at this following website:

(You can check a box there to receive an email every time an update is posted.)

I will be back here soon, posting more blogs on my thoughts about healing outside and inside when I get home and some of my energy returns.

One final note for the Cabrillo people just finding out about my tumor and my blog: thank you Ellen for that beautiful email informing everyone of my condition.  I promise my prognosis is excellent at this point.  The tumor is definitely benign, and surgery was quite possibly successful enough that I will not need radiation.  However, I do have an official excuse now for missing so many of those Kernis sixteenth notes!

My love to all of you,

Wednesday, November 4, 2009

Thoughts One Day Before Surgery

I should be resting, but I woke up with a drive to write about two things. One is a happy memory and one is sad. Yet I have the energy to write about one thing only, and (if you have been following this blog) you can guess which I will choose.

Sadness is the foundation of who we are. It is the pillar we cling to in times of need. Sadness tells us who we miss and for what we are grateful. Sadness is at the core of humanity. I mean this not this in a depressing way—not at all, and quite the opposite—but rather in a profound way. Happiness is the froth of life, the bubbles on the champagne. Happiness is wonderful to have, but after a lot of soul-searching I don't feel it constitutes a foundation. If life were a sailboat happiness would be the sail and sadness would be the hull.

In this time of my life—where I am about to have a second brain surgery in as many months—I am focussing on stability and not speed. My sails are down.

At least twenty-five years ago I attended the summer camp at Interlochen in northern Michigan three summers in a row. For those who don't know, Interlochen is one of the most renowned arts education destinations in the world, drawing students from every corner of the globe. I had been well-traveled my entire life, but nothing prepared me for the endless variety of students I encountered there. I could write for the rest of my life about Interlochen and never run out of things to say.

Today, I wanted to share my limited encounters with a certain violinist, a boy who played in my orchestra (Interlochen had several for different levels and age groups). I never heard him play by himself, but he sat in the middle of the section which—at Interlochen, with its weekly "challenges"—meant he was not the best but also not the worst. He competed.

The boy was blind.

He had short, straight black hair and did not wear sunglasses to conceal his eyes which had a dull gray color. I didn't know his name, but it amazed me that he learned to play every note from memory each week for two straight months. Occasionally, I would hear a lament from whomever was his "stand partner" that week. (In violin sections, two players share one music stand, making them musical "partners".) The stand partner sometimes didn't like being stuck helping him learn his part for the week, but I suppose that is the kind of thing a fifteen-year-old might not understand.

One time, the conductor asked the orchestra, "Here we have an interesting chord: C, E-flat, G-flat, B-flat. Can anyone tell me what this chord is?"

I was a music theory geek by then and knew it was a half-dimished seventh chord. But I saw the boy's hand shoot up, so I kept mine down.

"Yes?" the conductor asked.

"Diminished," the boy said.

"Very good! Well, actually, it is a half-dimished seventh, but very, very good!" The conductor paused, then said, "Sometimes I see a few of you arriving late. Rushing in after taking too long at breakfast. You have no excuse to be late for rehearsal. But there is one boy in this orchestra who ALWAYS has an excuse to be late, and I will never question if he is late."

The conductor gestured to the boy. It was an awkward moment. (Were we supposed to clap?) The moment passed, and rehearsal continued.

Later in the summer, I stopped to watch the boy attempting ping-pong. (The options for unsupervised recreation were ping-pong, tennis or basketball.) The boy was trying to hit the ping-pong ball based on the sound, and I must say he was doing well. He lost, but he put up a fight. I stood and watched all of this but did not say anything.

When the game was over, his competition asked, "Can I see your eyes?"

"Okay," the boy said.

"Wow, they're all milky. So you can't see at all?"

"I can see light and dark, and some outlines of shadows. They say my eyes are 'non-functioning.'"


Towards the end of the summer, we were taken on a field trip to Point Betsie, about an hour away by bus. Point Betsie was on the Lake Michigan shore and was notable both for its picturesque lighthouse (which we ignored) and its sand dunes. For several hours we ran to the tops of the dunes, jumped off and tumbled down, cushioned along the way by the soft sand. Then we would run back up, stand in line with the other eager boys and jump off again.

At the bottom, I munched on a freshly grilled hot dog, looking down as I splashed my feet in the water. The summer had been a failure for me, I thought. I had set a goal to win enough "challenges" to put me, as a tenth-grader, in the top high school orchestra, aptly named WYSO (World Youth Symphony Orchestra). I never made it, and—to me—the badge of honor that came with being able to say, "Oh yes, [sigh] I play in WYSO," was something I desired more than anything. Suddenly I lifted my head and looked up to the top of the tallest sand dune because I heard a commotion.

The boy was standing on the jump-off point.

The other boys stood around him, helping to get the angle right. Clearly, no one was goading him. He wanted to do this, just the same as anyone else. Once the angle had been agreed upon and without any further prodding, the boy took a fantastically strong leap—as pure a leap of faith as I have ever seen in my life—and he landed about thirty feet below in a thorny bush, having missed his sandy target by a few degrees to the right. The boy was unfazed. He stood, brushed himself off and found his way to the bottom of the dune.

That was the last time I saw him, that incredible jump. Nowadays, every once in a while when I see Olympic diving or ski-jumping I get that feeling deep down I have seen even better.

Tuesday, November 3, 2009

Surgery Update - MEDICAL

The past few days I have regressed so much I feel just as I did before the first surgery one month ago. As much as I hate to admit it, and in spite of my personal success yesterday "Skyping" my way to a first hearing of my new orchestral composition 2,000 miles away, all the good things I have felt blossoming inside me are replaced with this: I have splitting headaches, ringing ears, and a left eye so dimmed out I'm almost blind. The amazing breath of new life I felt in the first two weeks after the surgery is all but gone. To be clear, this is not a mental or emotional state; this is simply my tumor ballooning up again, squishing my pituitary gland down to a flattened pea, spreading my optic nerves apart lie two viola strings and pushing up on my brain, causing the massive headaches.

My heightened sense of smell is gone. I don't feel like I'm floating in an ocean anymore. I'm back in the familiar corridors and doorways. As much as I have tried to deny this sudden reversal of fortune, I'm back to feeling "not real" anymore. I am once again a fax copy of a person. I have tasted real living for a few wonderful days, and I want that sensation back. But the therapy for my mind will have to wait. My head and my body are physically in disarray.

Once again, I have a golf ball-sized tumor behind my sinus cavity that has puffed back up in a matter of weeks. I have no choice but to go back to square one.

In many ways, this will be a repeat of the past month. I'm having the same surgery but with a different neurosurgeon who specializes in craniopharyngiomas (now that we know the pathology). The recovery in the hospital will be the same. I'll have a spinal tap again (ouch). I'll have sinus packing again for three days (uggghhh!). I'll have access to the good drugs (oooo yeah . . .). I'll have to stay completely horizontal for weeks (bo-ring). I'll have the blood pressure cuff going off every ten minutes, waking me just as I fall asleep (annoying).

And, I'll be reminded how much I am loved by seeing everyone rally around me again (yes, you all have to do it again).

I am afraid.

The first time, everything was new. I was able to shake off the pain and discomfort perhaps due to the novelty of it all. How many people get to be a patient of neurosurgery—with all the sympathy that comes with it—without the looming question of whether your life would hang in the balance? As I have made clear, my tumor is indeed quite serious but it is not life-threatening. I thought I could make it through in one piece if I simply followed the post-op instructions very seriously. I did, and I let MJ take care of me.

Yet now that I have to go through the whole thing again it makes me focus on all the things I hated the first time (and there is plenty to hate about recovering from neurosurgery). I have blocked out the unpleasantness because I imagined the whole ordeal like driving through a tunnel without a rear-view mirror. All my attention was on the pinpoint of light flickering in the distance in front of me. The more I concentrated on my rehab, the larger the light became. The light beckoned a little more every day, getting larger, and I imagined the light as "The New Me." Stronger, healthier, happier, more genuine, more loved, more loving.

But last week the light started getting smaller. Even though I was doing everything correctly, going forward methodically and not looking back, the end of the tunnel suddenly lengthened so much the light is back to being a tiny pinpoint. And now I am trapped in the middle of a very long tunnel. I can't go back, and must keep going forward. I have all this work to do over again, and like in Kurt Vonnegut's under-appreciated "Timequake" I simply have to find that dense resolve and just go through every single thing again.

Only this time I won't have to harvest the peppers. Those are safely inside for the winter, so that is one less thing I need to do. Now I have a happy thought for the day.

Sunday, November 1, 2009

Limousine Story 1

I never know what I am going to write. That is the one promise I made to myself and to my readers when I started this blog. I don't have a plan, and I will never write out of a sense of duty. I only write what comes to me naturally with the belief that my internal healing from my tumor is somehow guiding all of this.

This morning I woke up thinking about limousines. Don't ask me why because I have no clue. I asked myself, "Are you seriously going to get out of bed, open your laptop, and write about limousines? What for?"

I didn't.

Instead, I printed out the Sunday New York Times crossword, poured myself a cup of coffee MJ had made for me, and sharpened my pencil.

1-across: Tops (4 letters). Hmm, not sure. 1-down: Limo, e.g. (3 letters).

If that is not a sign, then I don't know what a sign is. So here are a few of my thoughts about limousines and WAIT! . . . this is going to be good; keep reading. But don't get your hopes up for certain things, either. I don't have any saucy stories to share.  No indiscretions, no sordid tales of standing up through the sunroof, waving undergarments. That's not me. Still, I would bet almost anyone can come up with a good limousine story, even if you have never been inside one. It might make a good book—a compilation of random memories about that one time in our life we got to ride in a limo.

A good storyline—for any story about anything—is basically this: A wants B, but C gets in the way. We are "A." The limousine is "B" and represents something we (supposedly) want in life: the high life, success, stature, the chance to be someone else for a few hours. "C" is the realization that, in the end, you cannot make yourself into something you are not simply because you can step in and out of a limo. Who you are begins and ends with how large your heart is, not how long your car is.

When I was at Juilliard, my parents lived in Michigan and I would fly home on holidays. A taxi ride from the Upper West Side of Manhattan to La Guardia Airport in the mid-1980s was around $20, if I remember correctly. One day, a flyer was slipped under my apartment door for a car service to the airport. There were three choices: private car ($17), luxury car ($19), and limousine ($24). I happened to be traveling home the next day, so I called the number.

"What's the difference between all three cars?" I asked the person with the thick Brooklyn accent.

"One's a car, one's a longer car, one's a limo."

"The middle one -- how much longer is it?"

"It's like a car. But it's a more luxurious car. A longer car. But not a limo."


I didn't want a limo, which would feel and look ridiculous. But for some reason I felt like treating myself the extra two dollars to upgrade from a private car to a luxury car. Somehow, the notion of a "longer car" made me feel good. It would make me feel slightly more important, yet not snooty. I had worked hard all semester and the price was still less than a taxi. I reserved it.

The next day, sure enough, a black car waited for me in front of my apartment building. It was just as advertised: It was like a car, only longer, but not a limo. I climbed in.

The back seat was like a regular back seat of a car, but there was more legroom. Because my feet had nothing to rest on, I put my bag on the floor and pushed them against it. The driver began speaking to me.

"Has numerology touched you?" he asked. I don't remember what he looked like, only that his teeth were crooked. The entire ride I watched a rear view mirror outlining a slanted mouth with crooked teeth speaking to me.

"Touched me? I guess not," I replied.

He proceeded to tell me about his passionate study of numerology. Basically, disaster comes when the numbers 3, 4 and 7 are in play, either by themselves or in combination. The space shuttle Challenger, which had exploded the previous year, had 44,000 parts (according to him). It blew up 73 seconds into its flight. Case closed.

My driver then told me he had special powers to "see" things others cannot. In his apartment, he painted one window green, to "summon the power of nature," one window black, because "Satan is our realm's largest negative entity, and he deserves recognition for that," (exact quote) and the third window he left clear, to "signify the power I have to see through things."

"But does it make you worry that you have THREE windows?" I asked.

"You are perceptive," he replied. "I could tell this when you got in the car. But because I painted them I do not have three windows. I now have three separate entities. One can change one's own fate by altering the appearance of one's surroundings."

One could, could one? I decided to let him talk. He told me how a pigeon sacrificed itself for him once, willfully walking in front of his car and inviting him to drive over it. He said he wept as he felt the wheel crunch down on the bird. Then he felt the life force of the pigeon "enter" him. When his landlord evicted him from his previous apartment (he was squatting in the current one with the painted windows) it had rained for three days after that.  This—to him—symbolized the world mourning the injustice of his eviction. He told me he was the one remaining descendant of an "ancient, secret power" that allowed him to see things like love or hate within people because of their "color aura." He told me he could see only love inside me, and he shed real tears as he said this. He told me his life was all about suffering, and that by willfully suffering himself he would be making things better for others because the "balance of equilibrium across the time spectrum can never be distorted" (another exact quote).

When we reached the passenger drop-off at La Guardia, I paid him $19 plus a nice tip. As I gathered my bags on the curb, he rolled down the passenger window and spoke one more time. I'll never forget his last words to me, which were: "Do not think because of this you shouldn't have fun in life. I have fun all the time. For example, I have been with 47 women." Then he rolled up the window and drove away.

Inside the airport, I checked my luggage and walked to the gate. I looked out the (unpainted) window to view the plane I was about to board.  The tail number was comprised of nothing but the numbers 3, 4, and 7.

If you have a short, interesting story about a limousine, please leave it in the comments below, and maybe we can come up with enough of them to make a book.