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Wednesday, December 30, 2009

NPR Interview

BEGIN TRANSCRIPT (Edited for length)


Terry Gross (Host of NPR’s “Fresh Air”): My guest is Alexander Miller, blogger behind “Husband Amused” where he writes about surviving the resection of a brain tumor. He is a professional oboist with the Grand Rapids Symphony and the Cabrillo Music Festival Orchestra. He is also a composer of works such as “Remix in D,” premiered this year which applies hip-hop techniques to the Pachelbel Canon, “Fireworks,” performed in Carnegie Hall in 2005 and “Let Freedom Ring” for orchestra and narrator which has been performed by Danny Glover, James Earl Jones and President Bill Clinton. Welcome to Fresh Air.

Ale Miller: Thank you for inviting me on the program. It’s great to see my tax dollars at work.

TG: Eh —

AM: Kidding. I’m kidding.

TG: Okay. So you had a brain surgery earlier this year —

AM: — two —

TG: Two surgeries to remove a brain tumor. I’m curious, how did you first suspect you might have a brain tumor? How does that come about and when did you first think there was a problem?

AM: When I was writhing in pain. That was my first clue.

TG: So you —

AM: And my ears were ringing. I kept thinking it was dinnertime.

TG: Let’s hope it was someone good at the stove. So you went to the doctor. Your doctor ordered an MRI to rule out anything serious, but the MRI found a tumor. How did that hit you? That must have been hard to hear the news.

AM: It was. I mean, it’s one thing to hear about it, but it’s something else to SEE it, you know? There was this large mass right between my eyeballs. It was there plain as day on the screen. It was all, “HELLO! I’M A GOLF BALL STUCK IN THIS HERE BRAIN!” You know, like that. You didn’t need to go to medical school to spot that one.

TG: And you wrote in your blog this mass was—[sound of shuffling papers]— quote “squeezing apart your optic nerves like Zampano breaking the chain across his chest in ‘La Strada.’” That’s quite . . . is it getting hot in here? . . . [laughing] Why did you decide to begin blogging?

AM: It kind of evolved. At first, there was this website called Caring Bridge where my wife would write medical updates so loved ones could be notified simultaneously of changes to my condition while I was recovering in the hospital. “Alexander is not drooling as much today.” [Laughing.] You know. After a while, I began writing the blog myself as a way to pass the time. Then I registered my own domain name “Husband Amused” and it kind of went from there.

TG: You received feedback that encouraged you to keep writing.

AM: Yes. At first it was a few hundred friends and family egging me on. But then it went viral and now you are interviewing me. I must say, it's very surreal. After today’s program, I hope to increase my readership by at least five percent.

TG: Heh, I uh . . . [sound of coughing] why do you . . . you reveal some very personal things in your writing. You discuss personal failures as an adult, thoughts of suicide as an adolescent and childhood traumas such as the death of your nanny and seeing a dog shot to death when you were three years old. What made you take this approach as a writer?

AM: Drugs.

TG: What?

AM: I mean, being totally honest it was the drugs. I wanted to hug everyone and share myself with everyone on the planet. Drugs are great for creativity, you know, just terrific. Especially the ones nurses inject in your IV.

TG: But surely you don’t want to send the message drugs are good?

AM: Oh no, of course not. Alcohol is equally important. “Just say yes!” I guess.

TG: [Inaudible].

AM: Hello?

TG: [Inaudible.] Sorry, I was just summoning the intern whose idea it was to book you when the Tiger Woods people canceled at the last minute.

AM: Hey, it’s cool. I am who I am who I am. That’s me quoting some poetry there.

TG: Okay. You also write about your dog. Tell us about your dog Noah.

AM: Well, he’s a big black dog —

TG: — a Newfoundland, right? —

AM: Indeed. Wow, you did your homework. Did you actually read my blog before doing this interview or was that a lucky guess?


Of course (and before I go too much farther) none of the above actually happened. As I while away the long hours of my convalescence, my imagination runs wild all the time the way it did when I was a child. There is no other way to cope. In the last few months I have made inauguration speeches, accepted Pulitzer Prizes and thanked the Academy more times than I can count.

But my favorite fantasy is when I am interviewed by Terry Gross on NPR’s “Fresh Air.” Every time I turn on NPR on the drives up north I hear her intelligent voice, and all I want is to be on the receiving end of those interviews. By now, I know the formula. Here it is:

Terry Gross: My guest is Famous Celebrity. Hello, Famous Celebrity.

Famous Celebrity: Hello, I feel all cozy with you.

TG: Aww, snuggle snuggle.

FC: Snuggle back.

TG: I’m your mommy all of a sudden and I’m going to throw softball questions at you.

FC: I’m catching the softballs!

TG: Question about your childhood?

FC: Regular this, regular that. But inside I knew I was different.

TG: [Head tilted]: Really?

FC: You understand me!

TG: Now I’m going to pick at the scabs.

FC: Ooooh, that tickles!

TG: Thank you for being on the show.

FC: Is it time already?


As my convalescence nears an end, I must ask myself the same question I hear in my imaginary conversations:

Is it time already?
Is it time to return to normal life?
Just when we were starting to have fun?

Tuesday, December 22, 2009

Tumor Board

On Friday I met with my neurosurgeon, and (finally) here is the report –

My neurosurgeon had just returned from his presentation at “Tumor Board”, and yours truly was (as usual) the subject of much debate. Papillary craniopharyngiomas don’t just happen every day, and the brainiest of the brain surgeons all clamored to have a look at my head scans. My surgeon pulled up the MRIs from just before and just after the second surgery and placed them on side-by-side monitors. The “before” image showed a big mass behind my eyeballs squeezing apart my optic nerves like Zampanòbreaking the chain across his chest in “La Strada.” The “after” image looked pretty clean with the entire tumor gone.

Except for one tiny speck.

Behind a curl of bone in the skull the surgeon could not get to, there is a little white mass on the “after” MRI scan. The speck is not necessarily tumor. It could, for example, be my pituitary gland pushed way out of place. Or it could be nothing. Or it could be tumor after all. Or it could be a fly on the lens. Regardless of any argument from an academic point of view, nothing is definitive. There is just no way to know.

All I know is I have a teensy little speck still in my head and the smartest guys in the room couldn’t agree what to do. Here are my options:

Option #1: DO NOTHING. There is not much to suggest I have much to lose by this approach. The tumor was not malignant. Even if this benign speck grows back over time, craniopharyngiomas are notoriously slow-growing masses and it might not be a problem for 5-10 years down the road. With regular brain MRIs now a certainty for the rest of my life, this little speck’s every move will at least be tracked, tagged and monitored. Nothing will sneak up on me.

Option #2: RADIATION THERAPY. This was the biggest point of contention at Tumor Board. From a neuroradiologist’s point of view, my tumor has just been whittled down and forced into a corner. What is needed is a good few zaps to deliver a knock-out punch and kill it for good. Sound reasonable. However, the argument against is the potential side-effects. Less than 1% of patients receiving radiation between the optic nerves will suffer permanent vision loss of some sort. For those who have seen me go through this before, every time I have a major medical procedure, I find myself in that 1% category. I just can’t risk partial blindness. I happen to like the conductors in my life, and I’d like to be able to see them so I can know when to play.

Option #3: SURGERY. The worst option, and everyone at least seems to agree on that. There is little to be gained by opening up one mo’ time trying to find a tiny speck when the last surgery was over four hours of meticulous scrape, scrape, scrape. Another hospital stay is not worth it at this point, even for the awesome drugs. [ <-- Joke ]

Option # 4: CHEMO. Uh, no.

ANALYSIS: It seems like a no-brainer (pun!). I’m going to do nothing. My next MRI will be in two months, and we’ll be able to compare that with the post-op scan. There is a small argument to be made for radiation therapy right now and pulverizing the remaining tumor in its most vulnerable state. However, what if the targeted mass is not tumor but in fact my pituitary gland out of place? That would make things worse. Also, the slight chance my eyesight could be damaged is not worth it, no matter how remote the odds. Surgery just seems stupid. I liked the nurses fluffing my pillows, but besides that it was one of the worst experiences of my life.

It is human nature to want to DO something, to proactively add something to a set of variables in order to make things better. It goes against our natural instincts to sit back and do nothing at all, yet sometimes this is the right course of action, to remain passive as things reconfigure around you. This is such a crossroads for me. I have a tiny speck in my head, and it bugs me that probably it is up to no good. I want to reach inside my skull, yank it out, and be done with it. But it’s not often in life we get to make everything just so and we need to work around little specks from time to time.

Saturday, December 19, 2009

The Giggles

I saw my brain surgeon this morning, and I will write a full report on that tomorrow or Sunday. For some reason, I am very nostalgic tonight and I just feel like writing about a few old memories of mine, something I have been compelled to do several times during my weeks of healing following both surgeries. Anyone's key memories are usually formed when something is done for the first time . . . or when something goes horribly wrong.

When the two are combined, watch out.

Right now I am home with Noah, convalescing for yet another long evening of hot and cold flashes. MJ is out performing “The Nutcracker,” one arm of the triple-hell professional musicians go through every December comprised of “The Messiah,” Christmas Pops, and “The Nutcracker.” Now don’t get me wrong—all of the above is beautiful music. This is why it is played year in and year out. But with repetition anything beautiful can lose its sparkle. So as I re-evaluate every part of my life and continue to put myself back together, my mind wanders to the first time I ever played The Messiah, when everything was fresh and new.

I was a junior in high school. The year before I had changed to my first serious oboe teacher and I was now playing “gigs.” When December rolled around, I was called to play second oboe in The Messiah with a pick-up orchestra. When I arrived for rehearsal, I stopped dead in my tracks. There, in the first oboe chair, was the best free-lance oboist in town, a recent graduate of arguably the top oboe school in the country.

He looked me up and down and returned to his warm-ups consisting of arpeggios in every key. (I wet my reeds and tooted a few notes.) When he was done, he extended his left arm and said, “Okay, let me try your set-up.” I handed my oboe to him along with a reed I had made. He blew into my instrument and sounded good. Real good. He played everything with authority.

“Good,” he said, and handed it back to me. He guided me through the rehearsal, giving me tips. (“In this spot, wait for the celli and don’t come in early,” etc..) I took notes and tried to keep up, but it was the longest piece I had ever played. Endless pages of music. Gorgeous stuff, but I was too frazzled to appreciate it.

The conductor had one odd request: when the chorus was to sing the line from Psalm 22:8, “Let him deliver him,” he wanted the voices to have a nasal, witch-like quality. He did not “conduct” these bars in the traditional manner of beating time but instead rubbed his hands together in sinister fashion.

At the end of rehearsal, the first oboist patted me on the back. “Good,” he said, and left.

At the concert everything fell apart.

It began with a wrong entrance by a cellist. She jumped in a beat early, something musicians refer to as—for better or for worse—a brain fart. The sound of her cello during the silence was so wrong it was funny. In the pure silence it indeed sounded just like a fart.

The seed of destruction was planted. This was my first experience outside of school where a case of the giggles spread like a rogue virus. I expected professionals to be immune to the giggles (and, truth be told, they are for the most part) so it was jarring to see role models doubled over.

I did not want to succumb to it, lest I appear like a giggly kid on his first job. The others had paid their dues and had chits to cash in. I put my mind elsewhere. Anywhere.

My music stand. It was crooked and leaned back too much. If I tilted it forward I could read the music at a better angle. I set my oboe on my lap and tweaked the top of the stand.


The stand needed oil. Everyone heard it and it was louder than the music. But now the stand stood straight up and down and my music was in danger of falling forward. I had no choice but to push it back. I did so with great care.


A bark of laughter popped in the brass section. What previously had been private snickering was now unabashedly audible, and it only devolved from there. What was worse, I had caused this turn of events. What really set things off was that the choral section with “Let him deliver him” was up next. The conductor’s special request for the witch-like timbre could not have been more ill-timed. When it happened, the chorus members contorted their sound so much they might as well have been singing, “I’ll get you, my pretty . . . and your little dog too!” That was all the musicians needed to lose it.

The very first time I played in public I battled the giggles too. It was in the third grade in Australia for a Nativity play. I was the only one in the class who played an instrument that was not the recorder, so I was assigned to be an angel that would play a hymn on the flute right after Jesus was born.

My costume was mostly a smock from art class that was bleached white. On my back I had a pair of wings fashioned from coat hangers and newspaper spray painted gold and attached to the smock with black electrical tape. I didn’t get to see the play unfold, but I knew that when a teacher pointed at me I was to walk in front of everyone in my angel costume, play the hymn from memory, then walk off.

The whole time I was terrified I was going to laugh, but I didn’t. I got through it, and that gave me a supreme boost of confidence. Perhaps even then—my first time as a soloist in the third grade—I felt a little bit of the high I get every night I’m on stage, the guilty feeling that I know I can do something a lot of others cannot.

Friday, December 11, 2009

T-shirt Must Remain On

I write today with a shred of good news: a doctor examined me and did not declare my situation completely hopeless.

More specifically, I had a follow-up appointment with the Ear Nose & Throat (ENT) surgeon—a terrific man—who also happens to be my next door neighbor. I had a host of questions for him about my ears ringing, my tingly scalp, my bloody nasal discharges, etc., but all I was able to walk away with was the confirmation that none of my current issues ORIGINATE from problems in the ears, nose, or throat. I suspected this, but it was necessary to have this intermediate step before the big appointment next week with the brain surgeon.

If my head were a giant nut, the ENT surgeon is like the nutcracker and the neurosurgeon is like that metal stick near a bowl of holiday nuts for poking and prying the meat out of walnuts and pecans. So today I ruled out problems with the "shell" and next week the brain surgeon will get to the "meat," probably with another MRI.

The other key thing I heard today was my extremely unusual PAPILLARY CRANIOPHARYNGIOMA (and its recurrence) was nothing more than "bad luck." Nothing in my lifestyle, eating / drinking habits, allergies, oboe playing, fondness for the Detroit Lions, fondness for the Stockhausen Klavierstücke, or anything I can possibly control led to the tumor. A few unlucky ones get it. Most don't.

In the meantime, I have begun to manually replace hormones my pituitary, hypothalamus and thyroid glands will not provide for me anymore. When I wake up first thing, I take a thyroid pill with plenty of water. Then for my diabetes insipidus I do one squirt of a nasal spray which keeps me from urinating up to 24,000 ml per day (and drinking water frantically to keep up with the dehydration). One little squirt stops all that. Amazing.

Then I shower and—literally—it is time to "man up."

As I dry myself—the water droplets on my tanned pectoral muscles glistening in the morning sunlight—I open the top drawer and retrieve a foil packet of AndroGel. Pure testosterone.

I put on gamma-shielding sunglasses and rip the packet open. A burst of laser light blazes from the open foil, bouncing off the mirrors, and a chorus of angels sings high above me. I smear the gel evenly over my shoulders and upper arms, then wipe the excess over my abdominal muscles which protrude like a six-pack of steel. I wash my hands thoroughly and wait for the gel to dry before sliding into a loose T-shirt. I must keep the T-shirt on always—A.L.W.A.Y.S.—and suffice it to say the instructions leave no stone unturned when spelling out circumstances that arise between spouses where the T-shirt MUST REMAIN ON.

My endocrinologist—the straight talker—was clear about this too. He said, "Apply it to your shoulders and stomach. Keep a T-shirt on and make sure you don't . . . uh . . . get it all over your wife."

Got it.

This encouraged me to read more of the printed instructions for AndroGel because they were starting out so darned good. I was not disappointed. I also read, for example, it is not a good idea to apply AndroGel "directly to the scrotum." I was not going to do this, and I must say the thought never occurred to me. But I assume the determination of some patients to get back on track knows no bounds.

Also (I read with increasing interest) AndroGel is flammable. Staying away from open flames is "recommended." Reading back to the earlier paragraph about where NOT to apply the gel, I wonder if some unfortunate soul did the unthinkable once and—in a bedroom full of romantically lit candles—he ironically made Jerry Lee Lewis's biggest hit ("G. B. of F.!") very relevant all of a sudden.

I have been though enough rehabs (knee surgery, two hernia repairs and now two brain surgeries) to know the value of a slow, measured approach to putting oneself back together, both physically and emotionally -- Do it slowly, do it once, do it right, do it carefully, don't rush it . . . and don't do something stupid like self-immolate.

Tuesday, December 8, 2009

Update - MEDICAL

In two days I follow up with the Ear, Nose & Throat surgeon, and next week I follow up with the neurosurgeon, who will likely order another MRI. My hormone levels will be re-tested in six weeks and my dosages will be adjusted accordingly.

In a nutshell, here is where I stand today:

THE GOOD—No signs of “major” setbacks following brain surgery. No infection, no fever, no blood clots, no spinal fluid pouring out my nose. My hormonal shortages can be replaced. My vision is about 90% back and all my limbs are still attached. Also, I’m not a professional golfer with P.R. trouble and a lot of splainin’ to do to my wife.

-Headaches persist (in some ways getting worse), and they are not supposed to have gone on this long.

-The top of my scalp is once again “tingly” as it was before each of the positive MRIs.

-The ringing in my ears is once again constant as it was before each of the positive MRIs

-My vision—though greatly improved—is now quirky and unreliable: paragraphs pop unexpectedly when I read. I worry that my optic nerves have been damaged permanently.

-I’ve had strange bloody discharges from my right nostril, the point of entry for the surgery.

-I’m not good enough at golf to do it professionally. If I could, that would be awesome.

MY PREDICTION—The follow-up with the ENT won’t tell me much, but I might get an answer about the strange bloody noses. Next week the neurosurgeon will order an MRI to see why some of these symptoms are returning. I know what to look for in the scans, and by now I know BIG WHITE SPOT = BAD. But perhaps it is nothing. With the rarity of my tumor, there is little to compare it to.

I have done plenty of reading, and it is unthinkable the tumor—a benign one at that—could return a third time so quickly. Then again when it returned the second time no one predicted that either. Let it be known I can feel inside my head something is not right. My intuition is that simple. Yet from a medical point of view, the excision of the tumor walls (not done the first time) would preclude so quick a return. Yet my feeling persists, and when I get one of these sensations I am rarely wrong.

The liberating thing is there is not anything I can do in the meantime, so I enjoy every day as it comes. I have had plenty of time to be philosophical the past two months, and in a lot of ways life seems simpler than it did before. I didn’t choose my brain tumor, so I’m not depressed. I count my blessings, and I have many. In life, we either have circumstances thrust upon us (which we cannot control) or we have choices (which we can control). I have beaten myself up and learned from bad choices—and I have made a few notable ones—but I won’t expend energy worrying about things I can’t control. Life is too beautiful to waste time crying about circumstances you didn’t create.

Monday, December 7, 2009


I have not made any updates to this blog recently because there hasn’t been anything to report. My extremely low energy, my headaches, and my hot/cold flashes have kept me sidelined. Last week my hormone levels were checked, as I reported. On Friday I started a replacement therapy for an underperforming thyroid gland.

This morning my phone rang. It was the endocrinologist calling me personally.

He said, “We finally got the numbers back on your testosterone level. Uh . . . we need to treat it.”

I had been waiting for this. Prior to the first surgery, my number was 114. (Normal, healthy males my age score somewhere between 300 and 800.)

“Great, “ I said. “I assumed we’d have to treat it. Two brain surgeries is not going to make a low number go up. So what’s the new number?”

“Seven,” the endocrinologist said.

“Wait . . . seven? As in the number seven? SEVEN?? On a scale up to 800?”


(Jaw drop + profanity.) So there you have it, and that explains my overwhelming sense of ennui, not to mention why I can’t open jars anymore. My pituitary gland is officially kaput. Squished. Stick a fork in it, because that turkey is done. It would take fifty of me to equal one Woody Allen. Er, maybe that’s a bad example. Still, I am at 1/100 the level of your typical British MI6 agent.

So today MJ—also not doing well, by the way, battling major pain with an infected wisdom tooth—will bundle up and go fetch my treatment. From now on I will have a daily packet of gel to smear all over my shoulders and chest. This is something I will need to do “for about the next twenty years,” according to the endocrinologist.

I appreciate doctors who speak plainly, but this was maybe one of those times I would have preferred a little white lie.

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 Périgord 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.

Saturday, October 31, 2009


I hate needles.

When my mother would take me to the doctor and I needed to be poked, I would recoil from needles in such a way she would say, "Alexander! Thank goodness you will never go into the military. If you were captured you would reveal all the secrets to the enemy if they tortured you."

Feeling shame in front of the nurse holding the syringe, I would bite my lower lip, stare at the anatomy chart taped to the wall, suffer through the needle prick and ride home in silence.

Once, in Australia (I was six or seven), my whole family needed to get yellow fever shots in advance of our trip to Africa. I threw such a fit the doctor could not get close to me. My father picked me up and walked me around outside for a while, speaking in soothing tones.

He said, "Everyone needs to get these shots to protect us from a deadly disease. If we want to go on this family trip we all need to get the shot. If you decide you don't want the shot—and this is your choice—we'll just cancel the big trip to Africa and stay home instead, missing out on all the fun safaris, missing out on the zebras, the lions, the cheetahs, the hyenas and the impalas."

"Sounds reasonable," I said. "We'll stay home then."

I'm not sure how, but I found myself back in the injection chamber. My mother was next up, and I remember everyone in the room laughing, pretending that getting a shot was this fun, exciting new experience. The doctor laughed ("I poke you now! Pokey, pokey!") and my mother laughed when the needle went into her flesh. The doctor took his hands away and let the syringe flap up and down as it hung out of my mother's arm. She laughed at it and jiggled her arm to make the needle move in funny directions. I was not amused.

The doctor said to me, "You want to push the plunger in?"

I did not.

My mother said, "See? This doesn't hurt!" She laughed and jigged her arm again. "You can push the plunger in if you want. It will be funny!"

I failed to see the humor.

I don't remember past that point.  I only have a vague memory of a flash of bright lights, a flood of tears, leather straps (I could be imagining that part) and an unspeakable, searing pain so unbearable I'm sure I let half the city of Melbourne know just what I was feeling.

As I have grown up, nothing has changed.

But I have noticed that nurses at least appreciate the honesty of a grown man admitting displeasure with injections. I say the same thing every time: "Aaargh. I HATE needles." Then I take a deep breath and close my eyes. I think male nurses in particular admire that I don't act macho in front of them, that I don't pretend to "take it like a man" or whatever male bonding ("Yo!") thing you are supposed to do. (To this day, I have never understood that.) The nurses, I figure, have given thousands of injections or blood draws and have seen every reaction. If they see my honesty and my vulnerability, they try harder to make mine perfect.

For my most recent MRI, I was so tired of the recent parade of needles the tech knew this intuitively. Before I could even utter my first words, he calmed me with, "Don't worry, don't worry. I'm good." And—true to his word—he was. I could barely feel the needle going into my vein. It was so subtle I wasn't even sure he had done it. The only way I knew for sure was when he untied the rubber tubing cutting off the circulation to my arm.

"Wait, is that IT?" I asked.

"That's it," he said. "Easy, huh?"

"Wow. You are good."

"Men are easy," he said. "Little old ladies are hard. If you miss a vein they whack you."

When I was in the critical care unit following my first neurosurgery, the doctors needed a fresh blood sample every day for tests. One morning, a young nurse staggered into my room at the end of her shift. I woke up to the sound of her peeling the sterile paper away from the syringe. I was groggy and it startled me when she jabbed the needle deep into my hand.  ("AAArrrrrgggghh!")  She pulled the stopper back quickly, jerked the needle out, and walked away without a word. My automatic blood pressure cuff inflated shortly thereafter and my blood pressure was so high an alarm went off.

On another morning, a trim young man approached me. He didn't look like the other nurses. All I can say is he looked quite focussed, as if he were on an important secret mission.

"How are you?" he asked softly.

"I'm okay," I replied. "Are you here to draw blood?"


"I hate needles," I said.

"Everyone hates needles."

"I guess so. I never thought of it that way."

"Don't worry. I'm good," he said. He paused, as if considering whether he should say the next sentence, then simply said, "I just got back from Iraq."

"Wow," I said. I didn't know how else to respond, so I added, "God bless you."  (I think that's the correct response.)

He gave me a neutral look, a simple acknowledgement that I had spoken without any clue of what he felt about it. He stood and gathered his things.

"Wait, are we done?" I asked.

"That's it," he said.

I had not felt a thing, not even the tiniest prick. As he turned to leave I wanted to speak to him some more, but I didn't know what to say.  I just asked, "Army?"

He replied softly, "Yes," then opened the door.  My room had been dark, and the hard light from the corridor burst in, turning him at once into a dark outline with a fiery aura.

Friday, October 30, 2009

How to Fly an Airplane (Part I)

The notion that someday I could fly an airplane was something I ranked behind my chances of mastering trapeze or dancing a good disco. I just wasn’t the type. But three years ago MJ gave me a gift certificate for one pilot lesson, worth forty-nine dollars. I called the number on the card and made an appointment with someone named Nick.

The morning of my first flight, MJ brought down her old aviation textbooks. She had earned a pilot license herself several years ago (actually called a private pilot certificate), but her first husband crashed their plane into a cornfield and she hasn’t flown since. She hopes I will have better luck.

Looking over the books, I could tell there were a lot of new things: charts, graphs and terms like angle of attack, dihedral and longitudinal axis.  All of this was foreign to me. I was an excellent math and science student in high school, but that was twenty years ago. By the time I was a senior it was clear I was going to pursue a career in music and I turned my focus to humanities and literature. I remember walking out of the final pre-calculus exam the end of my junior year thinking, “I’ll never have to know this stuff again. Woo-hoo!” Yet now I warily eyed my wife’s E6B flight computer, a slide rule which calculated things like fuel burn, density altitude and wind correction angle.  I knew I was back in that hell again.

I drove to the airport, but instead of going to the main terminal I turned right and parked at Northern Air, which services everything from personal airplanes to private jets. I found the suite number, knocked on the door, and met Nick, who surprised me with his youthful appearance. I guess I assumed that—like in other fields—the role of “instructor” would be reserved for older, distinguished people coming from storied careers who were ready to impart their wisdom. Honestly, I thought Nick would look like Chuck Yeager. But I soon learned flight instructors make thirteen dollars an hour with no benefits.  It is an entry-level job.

I walked out on the tarmac with Nick, and he showed me our training airplane, a Diamond Star DA-40, which resembles a wasp. After a preliminary explanation of the flight instruments Nick told me to hop in the cockpit. I did. He got in the other seat, closed the Plexiglas bubble around us and started the engine. The propeller noise stunned me. As a professional musician I have developed sensitive ears and the noise was intrusive and constant. We put on some headsets, and that helped things a little. Nick made a few calls on the radio—one to check the weather, one to get clearance, one to ground control—and before I knew it we were taxiing to runway 26 Left.

Nick said the number of the runway told you the direction you were pointed. All you had to do was add a zero and that was your compass heading. Easy. Hence, runway 26 pointed us to 260 degrees on the compass, which was ten degrees shy of west. So far, things made sense. Then Nick said the headings were actually to magnetic north—not true north—so when planning a trip you had to adjust the numbers for "isogonic lines of magnetic variation." I told Nick that was enough information for now.

Once we arrived at the end of the runway, Nick changed radio frequencies and informed the control tower we were ready to go. They told us we were clear for take-off. Nick taxied onto the runway, added full power, and the airplane rolled straight down the centerline, gaining speed. In such a tiny plane, this was a rush. I noticed the airspeed indicator needle quiver and come alive. It steadily climbed past forty, then fifty. Once it hit sixty, Nick said, “And now we pull back just a bit on the stick.” In one gentle motion, the airplane seemed to lose all its weight and the wheels no longer touched the ground.

We were flying.

Up until this day I had been having a tough time dealing with the death of my mother. She was sixty-eight when she began mixing up words and the doctors found an incurable brain tumor. Shortly after that I watched her casket go into the cremation chamber where I personally activated the button that turned the flames on. At that moment all I could think was someday I was going to be in there. Right then I began making a list of the things I had yet to do with my life.

Professionally, I couldn’t complain. I had set out to have a career as an orchestral oboist and I was doing just that, holding a tenured spot in one of the best regional orchestras in the country. I had also set a goal to be a composer that people cared about. I was sort of doing that too. The year before my mother died, she watched me walk to center stage at Carnegie Hall and take a bow after a performance of my composition “Fireworks.” That was a really good moment for me. It’s hard to top that.

My personal life was even better. I was blessed with a fantastic partner in MJ.  We also had Noah, the best dog in the world. My first marriage, where I dived in young and stupid, had been a mistake, but I had things right now. And MJ had made a mistake the first time around, too. Her first husband survived the cornfield crash without a scratch but they later divorced. My marriage with MJ feels like two people who have seen the worst and are so grateful to have each other they would simply die before they let anything get between them.

So I was happy at work and happy at home. Yet the finality of turning the flames on your own mother reached deep inside me as nothing had before. When I pressed the red button, I could feel what I was missing in life. And the plain truth was despite all the goodness and security I had around me, I had fallen into a pattern of playing it safe. I had a cozy job with a union to protect me, a marriage with a wife to protect me, and a family with resources to protect me.

But I hadn’t proved myself to a room full of strangers in a long time.

As the Diamond Star lifted off runway 26 Left, I was surprised how quickly my thoughts turned to my mother like that. Even though I think she lived a full life, it still bothered me that she had been cheated out of her golden years, that she would now miss experiences she had earned the right to enjoy. It was like living in part of a television series that had no final episode to tie everything up. One day, the episodes just stopped. This weighed heavily on me, and for the months leading up to this I literally felt the sensation of being pressed into the ground, like a big thumb from the sky was stuffing me into the dirt and I didn’t know how to escape it.

Until now.

Once we were 500 feet above the ground, Nick retracted the take-off flaps, adjusted the propeller and power settings, and climbed to 3,000 feet. “Your airplane,” he said.

I had known this was coming, and I replied, “My airplane.”

“The controls are yours,” he confirmed.

Flying an airplane is different from driving a car, and the basics of flying straight and level require some getting used to. In a car you steer, and the car goes where you point the wheel. In an airplane, you are balancing three things, not one. Pitch is where you point the nose, either up or down. Roll is the angle the wings are tilted one way or the other. And yaw is the third axis, whether the nose is pointed left or right as you fly straight ahead (controlled via a rudder on the tail). So you have to constantly balance pitch, roll, and yaw just to fly in a straight line, and these also need to be balanced with the power setting. I thought I had things under control until Nick pointed out I had lost 500 feet of altitude. I climbed back up to 3,000 feet only to find myself more than two miles to the left of my desired course. I rolled the wings right to correct this, but I yawed the airplane too far into a skidding turn. And I also didn’t notice that I had continued climbing all the way to 3,500 feet. This was above the altitude the control tower had cleared us, and we were now in danger of colliding with commercial air traffic. This all happened in a few minutes.

After I stabilized, I asked Nick, “You said to keep my speed around 100 miles an hour?”

“100 knots, actually,” Nick corrected me. “In aviation we do things in knots.”

“What’s a knot?” I asked.

He paused, then said, “It’s . . . like a mile.”

By now I have logged over 50 hours of flight time, and I have learned that one knot equals 1.15 miles. But that exchange with Nick was my first clue he was not the best pilot. For example, he would demonstrate a steep turn, where you roll the airplane to 45 degrees of bank and fly in a circle while maintaining a constant altitude. Nick would say, “And then you add a little power here. Wait, no you add it here, oops.” The plane would plummet a quick 300 feet and he would say, “Okay, that was a terrible example. Now you try it.”

Shortly after that Nick got a job with a regional airline and I moved on to my next instructor. (I have had five different ones by now.) Brad, the next in line, was even younger than Nick but was an excellent pilot, very precise with the numbers. He had freckles and was awkward and geeky, but once he got the headset on he was in control. He is the type that will fly private jets someday.

After Brad there was Ryan. He was the oldest instructor I have had, 28, and he had some kind of military background. During my private ground school with him he drilled me on knowledge questions.

“What class of airspace begins at 18,000 feet?” he barked.

“Sir, Class A, SIR!”

“How high does that go?”

“Sir, 60,000 feet, SIR!”

“And above that?”

“Sir, it becomes Class E, SIR!”

He would study me for a moment and coolly say, “Excellent.”

I grew to like Ryan, and over time he softened. We became friends, and on his last day I gave him a bottle of rare olive oil along with one of my CDs. He was heading off for two weeks of training so he could fly for a freight company.

Alex was my most recent instructor, youthful, motivated and full of surprises. Many a lesson with Alex began with one goal, then suddenly he would idle the propeller and shout, “Engine failure! Engine failure!” leaving you scrambling. Once, he popped the circuit breaker for the alternator, which powers the electrical equipment in the cockpit. I consulted the emergency checklist and switched off all non-essential electrical elements, which buys you time with the backup battery. The radio—an important tool for emergency landings—stopped working, though. After the drill was over, Alex flicked the radio with his finger, and said, “Hmm, it’s supposed to work in a real emergency.”

Before Alex, Angie was an instructor I had for only one, memorable lesson. Angie had piercings in her face and she wore black make-up. Up in the air, she asked me to do a stall, where you intentionally force the airplane into a position where it will not fly anymore. You would never do this with passengers, but as a pilot it is important to practice stalling so you can recognize the signs leading up to it.

I slowed the Diamond Star down, pulled back on the stick, and pushed the power all the way in. The nose tipped up, the airspeed needle quivered down, and the plane shook. This is called a buffet, and it happens right before a stall. The controls get mushy and it is hard to keep the tail level.

But the airplane would not stall. I kept pulling back on the stick as we buffeted and the airspeed dropped to zero. At this point the twisting motion of the propeller torqued the airplane violently in the opposite direction so the right wing flipped down and the rest of the airplane went with it like a rag doll.

We stalled with the nose pointing straight at the ground. I had done stalls before, but I had never seen or even heard of a nose-down stall. One false move and we would go into a spin, which is commonly (and incorrectly) called a tailspin. In other words, we were about to be a statistic.

During symphony rehearsals, I get scolded by my colleague Ellen, who thinks I am insane for learning to fly. She is certain I am going to die. She always yells at me, “If you die in that airplane I’m going to kill you!”

I reassure Ellen by emailing her links to news stories about small planes crashing. But I always hide their content, typing the message, “Hey Ellen, check out this article about Tosca at the Met Opera.” When she clicks on the link, a web page opens and a headline reads, “Cessna 182 Crashes in Ozarks, Killing 2,” along with a picture of crumpled metal hanging from a tree. I know these jokes are in horrible taste. But my hope is that by eliciting an outrageous reaction it will force her to laugh, and then she will stop worrying.

But now in a nose-down stall, suddenly all those emails to Ellen don’t seem so funny. Those news items were about real people who died. Now I can see that in sending the emails to Ellen I wasn’t trying to calm her worries. I was calming my own. But it was a little late to realize this.

In this unusual attitude for the first time I panicked and did exactly the wrong thing by pulling the power all the way out. The airplane’s turn coordinator rolled to one side, signifying the beginning of a spin. I froze up. Had Angie not been in the copilot seat, I am certain this would have been the end of me.

“No, no, full power,” Angie said plainly. Her calm tone was lost on me, and as moments go this was terror beyond anything I had ever known. We were making a beeline for the ground. I was truly frozen, unable to think or do anything.

“FULL POWER!” she shouted.

I snapped out of it. I opened the throttle frantically and slammed on the rudder pedal opposite the spin. In an instant the airplane realigned itself, the propeller gave thrust, I leveled the wings, and the plane climbed. The whole episode took no more than a few seconds.

I was soaked in sweat and my face must have lost all its color because Angie asked me, “Are you okay to continue?”

“I’m fine,” I lied. I glanced at her. She looked like the Angel of Death. I had just relied on a stranger with Goth makeup to save my life.

“Okay, let’s do that again,” she said.

And we repeated the whole thing. But this time I was ready for it when the right wing whipped down after the plane refused to stall. I pushed the power in, leveled the wings, stabilized the rudder, and we recovered. What was a terrifying experience the first time became a predictable, almost boring lesson in aerodynamics. Engineers had designed the airplane so stall or spin recovery was just another event, like stepping on the brakes in your car. The airplane was fine. Pilots that panicked were the problem.

I cut the lesson short and asked to land. On the ground, I called MJ, something I do after every flight. I tried to tell her what happened, but no words came out. I cried openly for only the second time since my mother’s death.

After my mother died I cried only once, a few days after her cremation.  But since then it had felt like my tear ducts were stopped with beeswax. A terrible pain festered behind my eyes. “I feel like there’s an ocean of tears inside me,” I would tell MJ from time to time. Considering how many tears I have shed so freely since my neurosurgery, I wonder how much my tumor was acting as a stopper, and how much sadness was really trapped inside me the past three years. That is something science or medicine will never be able to quantify.