Husband Amused

The Sound of Two Eggs Cracking

2015-01-10T11:43:00.001-05:00

Aside from what was probably an acute Addisonian crisis last October and also a patch of skin cancer, my health has been fairly stable for a while now. My tests have been good and I have my routine down with meds and hormones. However, an old symptom returned two days ago and continued through yesterday: complex auditory auras.

In a nutshell, here is what happens:

1) You hear a sound.

2) Hours, days, or months later you "hear" it again, even though it didn't sound the second time.

Say you are cracking eggs over a bowl. That's a distinctive sound. Later in the day you hear someone else cracking eggs in the kitchen. You go to investigate. You still hear the eggs cracking, but no one is in the room. The kitchen is clean and the eggs are in the fridge. You still hear the eggs cracking. Is it in the walls? Is someone playing a joke on you, setting up speakers in the cabinets which play the sound of eggs cracking? You hear the sound exactly the same as when it happened for real. You are not "remembering" how it sounded. No, you are "hearing" it, in your ears, and the sound is coming from somewhere outside your body.

That's an auditory aura. You know it isn't, and yet it is.

A complex auditory aura is just that: more complex and complete, often musical, and they tend to occur with trained musicians. I have heard whole strands of music playing before, outside my body, mostly pieces I didn't recognize. This means they were original pieces my brain was inventing on the spot. Oh, for software that can transcribe freely from thoughts!

Anyway, this is what happened two days ago:

MJ went to the store to buy groceries (we needed eggs). I took a shower. When I was drying myself off, I heard the the garage door opening, then the rumble of MJ's car pulling in, then then the familiar sweeping sound of the back door swinging open. I heard MJ stepping inside, surely with bags of groceries in both arms and in need of my assistance unloading the car.

"Hey, Doll!" she called up the stairs.

"Be right down!" I shouted.

I finished toweling off, threw on some clean sweatpants and a shirt, and ran down the stairs.

The back door was closed. Nothing was on the kitchen counter.

I opened the back door and looked into the garage.

Empty.

I picked up my phone and checked MJ's location on our "Find My iPhone" app. She was still at the store, ten miles away.

I find these little episodes amusing, and so far they haven't driven me crazy. Sometimes it feels like a movie where a scene plays out one way, then another. In one scenario, MJ comes home with the eggs. In another, she doesn't. When the auras happen, I have to keep reminding myself of what is real -- like, for real, not faux real -- and what are just auditory auras, those perfect imposters created by my own brain. This is karmic payback, I just know, for all the practical jokes I have played on others.

The silver lining for me is that, unlike someone who hears voices IN their head, these sounds seem to be thankfully OUTside of me. I never get to the point where I'm in the corner of a room, curled in fetal position and stuttering about CIA people planting a chip in my head.

No, it's just amusing, my take on most of (my own) life, anyway.

Auditory auras. How odd.

Finally Some Bad News!

2014-10-15T10:37:00.000-04:00

I'm joking, of course, but that's what I wanted to call this new blog post. It has been a while since I have had anything newsworthy to report. I stopped blogging regularly two years ago when health-related issues settled into a regular rhythm. It felt wrong to post cliffhangers when I knew things would get better. I have had so many ups and downs the past five years I know the parameters by now. Minor issues play out as if from old movie screenplays, the pages all dogeared and frayed. Even awful days are not that bad because I know what to do: bedrest and/or adjust my meds. If I write about the same issues every time, my blog would be both boring and indulgent. I promised at the start to be neither.

However—news!—I experienced a unique, acute event on Sunday afternoon. I should write about it.

Around 2pm I knew something was not right in my body. I was driving home from CVS (where else?) and it felt like a cactus was growing inside me, everywhere, growing thicker and taking over my body, pushing needles out from under my skin. Very odd. I wasn't far from home and I pulled into our driveway safely. MJ happened to be in the garage defrosting the freezer as I stumbled out the vehicle. I didn't want to alarm her, so I said I was fine. The thing is, MJ can see through any type of horseshit, especially when it comes from me. Nurse MJ was on the scent.

Upstairs, we folded laundry without saying much. She watched my body language as I tried to act normal. I hung towels on the line outside, then we sat to watch the Lions play the Vikings. I watched the game. MJ watched the game and me.

The prickly sensation persisted, and I became jittery. My hands shook in such a manner that it was hard to put a water bottle to my lips. I broke into a hot sweat and—moments later—felt an icy freeze run through me. My voice cracked when I spoke. Almost anything I said made me break into tears. No idea why. Somewhere within me a water main was broken and tears just cascaded down my face if I said anything. I wasn't sad or upset, but I was scared. My body was in full flush-out mode; a siphon had started that could not be stopped.

After a while I looked as if I were freezing to death yet I felt only felt mildly cold on the inside, numb. I covered my legs with a throw but immediately felt fire. Hot flash! So I took it off. Freeze flash! This see-sawing of my body temperature played out several times. The last time I felt this way was five years ago, after the surgeries. The swings were far worse back then, but this was similar.

I watched more of the Lions. MJ watched me.

After the first missed field goal attempt I paused the game and admitted, "I feel horrible. Something is wrong."

She rubbed my shoulder and said, "I know you miss Jason Hanson."

A joke, of course. In fact, she was seriously concerned.

"Do you need to go to the doctor?" she asked.

"No."

"Then let me get you something."

I have discovered a talent for getting myself out of holes, using simple intuition: eyes closed, think of food or beverage. The first thing in my head is what my body needs.

Nuts.

I don't know how, but it helped. I can't remember a nut craving before. We had some shelled walnuts in the freezer, and MJ also brought me a plate of dried apricots, a source of potassium. I unpaused the game. As I ate handfuls of nuts and apricots my hand shakes were so bad I couldn't aim at my mouth correctly. Nuts fell to the floor. They felt good in my stomach, but I continued to cry for no apparent reason.

Also of note is how other foods repulsed me. Foods I wouldn't touch were a protein shake, a banana, beef jerky, toast, an omelet, or anything with refined sugar. I was just nuts for nuts and a wave of warmth passed through me. My yoyo system stabilized for a while, and I put my feet up to finish the game.

Gradually, I worsened again, this time with nausea. My hot flash / cold flash cycle restarted—worse than before—and now I made regular trips to the restroom, signaling the onset of the daily "breakthrough" urination related to my diabetes insipidus. During one of those trips I caught a glimpse of myself in the mirror. I took a close look at my face and thought, "Man, you look awful."

My skin was pasty and gray, my pupils were dilated, stuck in a too-open position that didn't look right. As I sat back down and talked (cried) this over with MJ, I noticed all the strange symptoms again: the cactus pushing under my skin, the temperature swings, the nausea, the anemia. I thought through an emergency room visit on a Sunday night. I didn't want to go. No energy. I wanted to go to bed. It was 5pm.

Nurse MJ was visibly scared at my growing indifference. She pressed me on whether it would be wise to go to the ER. In retrospect, my lack of concern for seeing a doctor was pure exhaustion. It sounded like a hassle and I wanted to lie down. I don't think there is much an ER could have done anyway besides keep me there for observation, run blood tests and take notes until I felt better. Maybe they would have started an I.V.. Maybe I was dehydrated.

Aha.

Backing up a bit, the past week I had been fighting a chest cold and running a fever. I was playing rehearsals and concerts, but I was spending the days in bed. Sunday morning, the fever broke and I made a hot foot bath. Then I took a long steam, trying to sweat out as much as I could stand, flushing all the toxins and yucky stuff from a week of illness. I had a bottle of water, but I only sipped it. Keep in mind that my omnipresent diabetes insipidus keeps me thirsty much of the time and have learned to resist gorging on liquids. So, fluid regulation is tricky. I probably threw a lot of things out of balance by purging so much fluid without replacing it.

My other side condition—panhypopituitarism—could have played a role too. "Panhypopit" is treated by replacing most of the body's natural hormone production artificially using sprays, pills and gels. Most people have glands that produce healthy hormones and—most importantly—respond to stressful situations by producing more of what is needed, on an as-needed basis. My body can't do this. If I am sick, I need to manually simulate what a normal gland will do and take more of one hormone to avoid getting even sicker. Actually, my glands would work fine if they could be told what to do. With panhypopit, the pituitary gland (which was right next to my excised brain tumor) stops doing its job. The pituitary is supposed to tell other glands what to produce. It's the CEO of HormoneCorp, and mine just sits there like a dead tadpole.

As a result, the other half of my theory about Sunday's acute event relates to hormones. As the hot-cold flashes persisted all night, I wondered if my too-aggresive approach to "spa day" did more than dehydrate me. I wonder if I somehow purged testosterone stored in my fat (absorbed via a gel smeared on the skin). Five years ago, my hot-cold flashes were at their most intense when I had zero testosterone, before my life of replacement therapy began.

And with cortisol, the steroid hormone, I have read enough accounts of adrenal crises in my craniopharyngioma support group to at least consider this too. I didn't experience a full, life-threatening adrenal crisis because I didn't have enough of the real symptoms like vomiting, high fever, disorientation, etc.. However, I did feel much better Sunday night after I swallowed an extra 10mg of hydrocortisone, something I am supposed to do when I am sick. Hydrocortisone (in larger doses) is the first thing used to treat an acute adrenal crisis.

It was an ordeal that remains a mystery, one worth writing down. It was seriously intense for a few hours, and it scared both of us. The symptoms have since faded. If Sunday was a 9 on a scale of 1 to 10, Monday was 4, and Tuesday was 1. Today it's a 3 again and I'm back in bed this morning. I just need to rest.

The Lions won, by the way. Sunday was a good day.

Early Blog Post - October 2009

2013-12-16T07:48:00.000-05:00

(Written Oct 14, 2009 8:41pm)

6:30pm on Wednesday night. I realize I may be straying in this journal, straying from what it is supposed to be – simply updates on my recovery – but I am also using it as an extension of my consciousness. There is no other way to explain this, but things are harder now since the surgery, keeping everything tucked inside my head. My thoughts look good to me on a computer screen, though. Much easier to decipher. Crammed in my head it’s still too much. And unless you have also gone through brain surgery you might just take my word for it. Too many dark corners I have created in my head where things slip away.

In the Harry Potter books, Dumbledore—the wisest character, mind you—uses a “pensieve” where he extracts thoughts from his head with his wand, places them in a bowl, and lets the thoughts sort themselves out while he watches from the outside. This feels the same.

I thought about watching an epic movie perhaps, to pass the time. My finger glanced over the linen DVD jacket of the special edition of “Lawrence of Arabia” we own. This was the first epic I ever saw, in Venezuela in the 1970s in the form of a Betamax tape my father brought home from one of his frequent trips to the United States. My mother cooed about how special it was all going to be, how wonderful. We watched it all night and I did love it. I was nine. It was as magical as my mother said it would be. I didn’t understand the plot, but I thought Peter O’Toole was good. Most notably, I recognized Alec Guinness as a younger man, the same man from Star Wars I had seen about fifty times that summer on another pirated and grainy Betamax tape.

“That’s ALEC GUINNESS!” I shouted at the TV.

“Yes,” my mother replied.

I was confused. He had been in another movie already. I didn’t know actors were allowed in more than one movie. One part for your life and you were done.

“People can do lots of movies, playing different parts,” she said. “The best actors do it over and over again.”

I was nine, and the thought had never had occurred to me until then.

I began to think. Even if you weren’t an actor, this meant you could play yourself one way and have everyone believe you, then you could turn around and play it another way to a different group, and they would believe you too. I made a mental note to work on this idea, because it seemed to have a lot of possibilities.

A decade or more later, I was an oboe student at Juilliard and “Lawrence of Arabia” had a grand re-release in the theaters. In New York, it was shown at the big Ziegfeld Theater on 54th street and it was an event ticket to get in. Sold out shows, lines around the block, that kind of thing. I went with a close friend from high school (also an oboist at Juilliard), a friend of his, and my girlfriend. The four of us squeezed into some tight seats and the movie began. I was so excited I was going to feel the magic once again. The first time the main theme blasted out of the speakers in surround sound we all took our eyes off the screen and looked at one another. Epic! There it was! However, I was older now and it bugged me that I still didn’t understand the plot or how it fit in with the rest of history.

I did leave the theater thinking it was great, but I also went INTO it thinking it HAD to be great. My mother still gushed about the movie all the time. She was going to buy us the laser disc version so we could watch it on holidays. All the papers talked about the significance of the re-release, and it felt like everyone in New York was cramming in to see it. Case closed.

After the show was over and the four of us walked out, my girlfriend said to me, “There weren’t any women in that movie.”

I hadn’t noticed. So I had that to mull over.

When DVD players came out another decade or more after that, I was divorced, rebuilding a new life from the ground up. I started dating MJ. I got a copy of the special edition DVD of “Lawrence of Arabia” for Christmas. I made an evening for us to watch it together. This was before home surround sound or flat screen TVs were affordable, and the movie seemed to consist mostly of a bright, sandy strip across the middle of my TV while the top and bottom of the screen was totally black.

At one point MJ said, “They keep shouting, ‘Or-ence! Or-ence!’ all the time.”

They were, actually, and it was kind of funny. We both laughed together every time it happened from then on. We held hands. It was great. I think the picture on my TV was also off and I could hardly tell the characters apart. Then the movie dragged on and got boring. We watched it to the end. I waited anywhere for an amazing cinematic feeling to wash over me again, but it wasn’t there.

I’m not ready to see it again quite yet (now another decade hence), but based on these experiences I am reminded about how much we pre-judge what we are determined to like, how we invest ourselves in feeling a certain way because someone else tells us it is going to be so. I was TOLD how great the movie was before I had ever seen it. Or maybe for me it was my first conscious thoughts of deceiving people with “acting” on purpose—playing different roles in different movies—not spontaneously but with premeditation and spotless artistry, completely legitimate and acceptable. Or maybe I was enamored with the movie simply because I liked to see my mother in love with Peter O’Toole, the way she swooned over his blue eyes standing out against the sand, bluer than the sky above him. One never really knows why these things get planted so deeply within you.

Peter O’Toole went on to star in a number of movies after that, of course, but every time I saw him on screen I still thought of him as Lawrence. Recently, he starred in one more movie and MJ and I watched this small film called “Venus” together. We loved every minute of it, both of us seeing the power of this old man’s nuances, unadorned and vulnerable. He played an aging actor looking for mischief on borrowed time. You could finally see the sadness in his blue eyes, the true sadness that is at the heart of so much that means anything. There was truth and beauty in his performance that was so real to us, something that trumped anything grandiose he tried to conjure in a dashing white outfit in the middle of the desert.

Dog Is Love (1 year anniversary re-post)

2013-08-15T16:44:00.000-04:00

Love comes in many flavors. Drool is one of them. Noah, a Newfoundland we adopted from my wife’s parents, was the antithesis of anything we thought we wanted. We wore cleanly pressed white pants and vacuumed every corner of the house. Noah was a mass of black fur who pooped on our carpet the moment his sensitive stomach couldn’t handle something. Sometimes—I am convinced of this—he did it to be funny, standing next to his scatolopus, tail wagging in utter delight even if we failed to see the humor. At his other end he was a “dry-mouth,” but fantastic strands of saliva still cast to the ceiling every time he shook.

Noah was a rescue dog from the start. He might have been put down as a puppy but MJ’s mother fell in love with him and paid full price. He was born with a deformity—a badly crooked tail, like an accordion—and its zigzag bone structure wandered up somewhere into his hindquarters. The one time he was X-rayed the vets could not believe it.

He was supposed to be a replacement for their previous dog, “Sam,” who had some Newfie in him but was of medium size. By the time Noah reached his first birthday he had to have been 150 pounds. They called him “Baby” and they meant it with genuine fondness and nary a whit of satire. In no time he ballooned to over 200 pounds, mostly staying inside because they risked injuring themselves if he went on a walk.

He was three when MJ’s father died and four when MJ’s mother was diagnosed with terminal cancer. For many nights Noah lay faithfully by her bed, sometimes barking at her in a vain attempt to restore her health. He loved her dearly and he didn’t want her to go.

After the funerals we had to find a home for Noah. We called around, asking breeders if they would take him. We received leads but for some reason we waited. Days passed, then weeks.

It was one night, watching TV, when we decided. We were on the loveseat and Noah rolled upside down, his legs flailing in the air and his back writhing against the carpet, grinding dander deep into the fibers. His back leg came to rest upon MJ’s lap. She grabbed the enormous hairy limb by the paw and shook the horrid thing before me.

“Look,” she said.

A bear. A live bear in our house. I could not resist that giant paw. He had to be ours.

We renewed his dog license and got to know his vet. In no time our house was blanketed in black fur. MJ set boundaries, putting up gates that limited Noah to just the front hall and family room. The daily fur and dander persisted and after a while I developed a dry cough. I saw pulmonologists and allergists who prescribed rescue inhalers, but as a professional oboist it was of little use. I was fighting a brigade with a slingshot. Anytime I returned home from a rehearsal or concert, Noah ran to me and covered me with slobber. After a while only a prescription cough syrup made my life livable.

Soon after adopting him we flew to New York to perform in Carnegie Hall. Noah was too big for a kennel and finding a sitter was a challenge. In a stroke of luck, a friend recommended a young man who stayed at our house while we were gone. In no time he locked himself out. Noah was trapped inside, hungry and thirsty, while we coached a virtual stranger how to break into our home.

Every part of our lives changed. Noah could not be alone for long, so we scheduled around his needs. Sitters were expensive, so we canceled trips. When our new music group did an experimental concert including John Cage’s “Theater Piece,” we incorporated him into the performance. As violins, flutes and clarinets roamed the stage, tooting randomly and reciting nonsensical words, Noah watched everything from his unique vantage point chained to the grand piano. For one part of the piece we threw biscuits to him and made him “sit.” When it was over the bewildered audience nonetheless applauded the new dog star of the underground avant-garde.

At home, Noah had a special way of saying, “I love you.” As you entered the room he rolled to one side and lifted his front paw, inviting you to scratch his chest. We always did, and that meant, “We love you, too.” When he was mad at you, he would not lift the paw; instead he exhaled in utter disappointment. To win back his affection, quality time with him was the only way. And if you gave him your time, he expected treats. Bits of chopped vegetables did the trick. Fennel was his favorite, but most of the time we had green beans and carrots at the ready. He couldn’t eat meat or bones. If he did, it was diarrhea for days. Other treats he loved were his Kong toy smeared with peanut butter and frozen bananas.

We took him on walks and in no time he was the star of the neighborhood. Cars pulled up and windows rolled down. Always the same question: “What kind of dog is that? He’s so big!” When Noah rode in the car and put his head out the window, cell phone cameras flashed at stoplights.

Noah’s archnemeses were rabbits. Some primal neuron fired and, no matter what you shouted at him, he bee-lined for those rodents wherever they popped. But Noah weighed 205 pounds and his élan was no match for his heft. The rabbits got away.

Except for one time.

A mother rabbit made the mistake of building her nest in our tomato garden. We didn’t know; it was spring and we had yet to turn the soil. Noah sniffed the air and acted oddly. He went to the bushes and pulled strands of ivy over his body as camouflage. Strange, we thought. When I checked on him later, Noah was burrowing furiously in the tomato bed. When he saw me he ran to his water dish—totally empty—and mimicked drinking. He kept his nose in there, pretending to drink as long as I stared him down. Canis ad cuniculus homicidium. A premeditated hit, and when I caught him in the act he improvised an alibi. Clever, very clever.

Our neighbors with three little children invited us over. We brought Noah into their yard and he fell in love with the kids. They ran in circles around him, amused by the novelty of such a large, friendly beast. Noah tackled the little boy, mounted him, and began humping. Horrified, I pulled him off. Then Noah took turns with the other two girls while MJ distracted the parents. He had been neutered since he was a pup, but—as with the rabbits—he had a primal drive buried deep. He thought the children were little dogs.

Newfies are water dogs, with webbed feet. They are trained to rescue drowning victims and they can jump from helicopters to get to them. But when Noah came into our lives, the closest experience he had with water was drinking from the hose. The first time we took him into a lake he trod deeper and deeper until his paws could barely touch the bottom. He held his neck high in desperation as water lapped against his mouth.

“Come on, Noah!” we urged. “One more step!”

He took that step and swallowed water. In a panic he thrashed his paws violently. The webbing between his toes bloomed, causing his head to gain buoyancy above the water. He was stunned—as if he had discovered a superpower—and thus was born my pet name for him: “Noah the Superdog.” Through the clear water we saw his aquapaws settle into a regular rhythm. His head surveyed left, then right, and in no time he mastered how to turn his body with sideways strokes. Later that day, as I led him by a rope through more swimming drills, he surprised me by biting the slack and towing me to dry land. All instinct.

We had to do something about Noah’s weight. He was sixty pounds heavier than an average adult Newfoundland. Walks weren’t enough, and adjusting his food didn’t help. We joined Shaggy Pines, a kind of Disneyland for dogs. Every day I drove him to the outskirts of town, buzzed him through a security gate and took off his leash. He ran wild. With twenty or more dogs at a time, the party never stopped. Whippets, Great Pyrenees, Bernese Mountain Dogs, Terriers, Beagles, Weimaraners, Irish Setters, Akitas, Mastiffs, Great Danes, St. Bernards, Huskies, Greyhounds and Labradors made their own rules and ran free. Noah rushed to every kerfuffle, often arriving just as they broke up. He gained a reputation as the Shaggy Pines “police dog,” untangling any melee by using his size. He never wanted to leave Shaggy Pines; it was there that he met the one Platonic love of his life, a stunning Kuvasz named Enya. Anytime she was there, he put on airs for her and never wanted to leave. If we had to go, he protested by slumping down next to the open car door in a full sulk. In a few months he dropped sixty pounds and never felt better.

But shortly after that, Noah’s kidneys failed. He looked green one day, threw up everything in his stomach and refused to eat. Our local vet tested his toxic blood and sent us straight to the animal hospital at Michigan State University. If he was to have any chance of surviving, that was it. The doctors tried everything. For days they flushed him with saline, hoping to clean his blood and give his kidneys a chance. In addition, they found an irregular heartbeat: atrial fibrillation. They tried a lot of experimental procedures that were of little help.

After five days, his team decided to stop all treatments and send him home. He was not going to make it and at least he could die with dignity in comfort, surrounded by those he loved. His doctor, whom we came to like very much, pleaded with us to try anything to make him eat.

For our benefit, Noah took symbolic nibbles off the smorgasbord we prepared for him. But he had given up. He sat with us for lunch and came into the living room for our pre-rehearsal nap. He showed us his rawhide even though he wouldn’t touch it. With a motion of his head he pretended to chew.

He slept on the porch that night. It was cold. I kissed him goodnight and covered him with a blanket. I told him, “Okay, buddy. We love you. You can have your privacy if you want it.” I came downstairs early the next morning expecting to find him lifeless and at peace. He still breathed, though it was with a stuttered exhale, a kind of wailing cry. I sank to my knees and could not control myself. I embraced Noah and cried an ocean of tears into his thick fur coat, asking why he had to go, why he couldn’t stay with us.

Noah sat up and—I am sure of this—looked at me quizzically. He studied my emotional state and drank it in, as if he had made some serious miscalculation. Then he licked my face. That morning, MJ made me breakfast that included scrambled eggs. Noah watched me eat, following the fork from my plate to my mouth and back. We never fed Noah from the table but I decided to try something.

“Mmmm. Scrambled eggs. Sooooo good,” I said.

Casually, I set my plate on the coffee table, within his reach if he craned his neck. Noah’s eyes turned to saucers. I picked up the newspaper and feigned interest. As a corner of the page curled down I espied Noah’s first voracious bite on his road back to health.

He made a full recovery, but with adjustments. Instead of regular dog food, he required a low-protein blend for dogs with renal failure. A 40 lb. bag cost eighty dollars. And there were pills. Lots of them. With a smear of peanut butter in my hand at breakfast and dinner, Noah consumed more than twenty pills per day for his various conditions and ailments. The medication for his cardiac arrhythmia cost a dollar per pill. Noah needed eight every day. We had already cut back certain lifestyle choices to accommodate Noah, but this pushed us past the limit for years to follow. But we did this with absolute joy, never a question in our minds.

From then on, we assumed every year would be his last. It was his last summer at the lake, then his last football season watching the Lions, then his last snowfall, his last Christmas, his last spring sitting in his favorite spot under the white and pink dogwoods, trampling the yellow sedum flowers. He loved the shaded tranquility there, and when he didn’t want to come inside he rolled on his side and lifted his front paw: “I love you.” He was nine, at the far end of life expectancy for Newfies. But after that it was another last summer at the lake again. Then Lions games started and it was his last time watching football.

Out of the blue, the discovery of my brain tumor sent me on a detour. I chuckled at the possibility of Noah outliving me, an irony I never would have predicted the day we rushed him to MSU. I hugged Noah before neurosurgery, and he licked me enthusiastically the day I came home from the hospital, returning all the love and power I had given him a year before. When I went in for a second neurosurgery—now more serious—he brought his favorite squeeze toy and offered it as a gift upon my return.

But the more I healed, the more Noah slowed. He turned ten and had another last summer at the lake again, then more last Lions games, a last snowfall, a last Christmas, and another last spring under the dogwoods trampling the sedum, rolling on his side and lifting his front paw: “I love you.”

His legs weakened and stairs were difficult, then impossible. Many Newfies suffer from hip dysplasia, often at half of Noah’s age. I wondered if his deformed tail had helped him last so long. Perhaps the bone structure buried in his hips had more angles of crosswise support, giving him extra years. It’s an interesting thought, that ugliness in youth can be an asset in old age.

We tended to him like a patient. We visited the vet frequently and tinkered with his meds. Noah turned eleven. He had one more last summer on the lake, one more last Lions season, one more last snowfall and last Christmas, and one final spring under the dogwoods trampling the sedum and lifting his front paw: “I love you.”

Noah turned twelve.

His bones creaked so badly we started him on pain medicine. It is a slippery slope with those pills, and the key was the art of striking a balance between managing his discomfort and allowing him to be himself. If he showed the spirit—the spark in his eyes—we would go to the ends of the earth for him, because that is what loved ones do. By the time his truly last summer at the lake started, he walked like a newborn colt. Every single day we were grateful he made it to the next. As long as he gave the effort, we were there for him. The last few months we had to lift him into a standing position because he could not do it on his own.

As his needs multiplied he turned grumpier. He bit me in the face when I tried to massage his sore joints. It was not a sudden, regretful reaction on his part; it was calculated. He meant to send a message: Never do that again. I had to go to the ER for that bite and I will have a scar on my cheek forever.

He refused to go outside some nights, and when we fell for that he relieved himself inside. Buckets, scrub brushes, steam cleaners, Resolve: we had our routine down by the end. We always thought it would never happen again.

Noah stayed with MJ’s sister when we flew to California for the Cabrillo Music Festival. We were gone three weeks. Through daily phone calls we heard details about his steady decline. He refused to come inside, instead choosing to sleep in the bushes. He still ate and took his pills, so we had hope.

One night it rained hard and Noah stubbornly stayed out. MJ’s sister left the garage door open in case he wanted shelter. In the middle of the night he went in there, but in the dark he stumbled. A bike fell on him and took a gash from his snout. She found him sleeping under a van the next morning, frightened.

When we came home from California, MJ drove to pick him up while I checked in with my “tumor team” for an important round of tests. I did well, but my neurologist ordered an MRI. But my own health was a far second on my list of concerns.

“How’s Noah?” I asked MJ after telling her my test results.

“Be prepared,” she said.

Noah was still lying in the van as I pulled into our driveway. When he saw me, his tail moved once, enough to show me. His eyes exuded defeat.

He needed the two of us to lift him into the driveway. He could not stand without us holding up his back legs. We cleaned him off with the hose and dried him with towels. He had the itch to shake, but he couldn’t. He stood awkwardly, dripping, so we toweled him again. We attached a back-leg harness and hoisted him up the front steps. Just inside the front door he collapsed into a heap, biting his lip on the way down and leaving blood on the rug. His body blocked the door from closing, so we pulled the other end of the rug, dragging him inside a few more inches so the door could swing shut. He was home.

I stayed up with him all night. He would have to go outside and he would need me. As a precaution, I slid old towels underneath his back end. I put my pillow next to his head and lay there, my body alongside his giant furry frame. I ran my hand down his body gently. He ached everywhere so I gave him another pain pill.

In the middle of the night I heard an explosion. A moment later I knew what had happened. I wiped him down, bundled up the towels and dropped them in the yard. I sterilized my hands and slid clean towels underneath his back and lay down next to him again. An hour later he did it again, and again I reset everything. I lay awake for the rest of the night, thinking about how to make diapers for large dogs. I wondered about burying a metal pole for ballast by the front steps and building a mechanism that could hoist Noah inside and outside the house. Then I mentally designed an adjustable cart with sturdy wheels—strapped underneath his ribcage—to let him walk around. If we can send a person to the moon, we could get this right.

Noah groaned, as if reading my mind. He was so very tired. He had been holding on so we could bring him home but it had not registered with me yet. I am a problem solver, but Noah did not want to be solved. When dawn came, he attempted to stand. His front paws clenched the rug fibers desperately while his back legs pushed. I put my arms around his stomach and pulled up gently. He strained and yelped as he shifted to another position and crumpled back to the ground.

MJ came downstairs, took one look at the two of us, and said, “Noah doesn’t want this anymore. We need to take him in.”

We didn’t need to take him anywhere. MJ called our vet who said she would drive to our house with a technician. Before they arrived, Noah used his energy for breathing. He rested comfortably. We offered him tiny bits of his favorite food, but he would not even sniff. We petted him gently and kissed his ears.

Noah knew what was happening. MJ and I cried, holding one another. We had an hour until the vet arrived. We petted Noah and told him we loved him.

Using all the rest of his energy, Noah rolled to one side and lifted his front paw: “I love you.” He did this three times over the next hour: once when I was alone with him, once when MJ was alone with him, and once when we were together with him. Dog is love, Dog is love, Dog is love. I love you, I love you, I love you.

The doorbell rang.

I answered it and our vet entered with a technician. I had never been more grateful for science.

“Where is he?” she asked.

“In there.”

We spoke in hushed tones. We had dimmed the lights and the air felt thick.

We gathered by Noah. He recognized his doctor, and I think he liked seeing her in his own house for once. We all ran our hands over his fur, respectfully, as we spoke.

She summarized everything to expect. She would need to shave a small part of his leg to be certain they would hit the vein. As the injection happened, it would be a few seconds before Noah would be gone. But it could take slightly longer with him because of his size. There might be involuntary movements or aftershocks, but that did not mean he would still be alive.

“We can begin, but if you need more time alone we can wait until you are ready,” she said.

“He needs one thing,” MJ said.

We gently eased off his harness and removed the special support around his back legs. Now he was pure dog, just Noah as he came into this world. He would not need a leash where he was going.

We looked into Noah’s eyes. He rested peacefully, his breathing relaxed. He looked comfortable. We looked at one another.

“Noah is ready,” we said.

We did not look back and kept our heads next to Noah. We talked to him, kissed him, and stroked his fur. I completely broke down in tears, but MJ stopped me: “This is Noah’s moment, not ours.” She was right, and I regained my composure. We heard the buzz of an electric razor.

“I love you,” MJ said. Then she whispered in his ear, “Love you, Baby.”

MJ’s parents—Noah’s original mom and dad—called him that. Noah knew he would be seeing them soon.

“You’re a good boy, Noah,” I said, then I called him by my own pet name: “Noah the Superdog.” I held his front paw and MJ put her hand over mine.

It was only a few seconds. I saw the syringe from the corner of my eye and looked away. I studied Noah’s eyes, looking right into him and cooed, “Good boy, Noah. We love you. We love you so much.” Noah breathed comfortably. I watched his eyes with every ounce of compassion I had while MJ kissed his head and ran her fingers through his fur. “Love you, Noah. Love you, Baby.”

Noah continued to breath comfortably and then—like a beautiful piece of music that ends in the middle—he did not take his next breath.

It was not a sudden ending. It was just an ending. There was no trauma, no pain, no final twitch, no death rattle, no hint from Noah that anything bad had happened. On, off. A seamless transition. Just another casual barefoot step along an endless, winding stone path. Step, step, step, step, step, eternal peace. That was all there was to it. Noah experienced what most humans will not: a dignified end when the time is right. People can go to the moon but they can’t get this right.

The moment after he died, a weight lifted from the room. Finally, Noah rested in peace. We had cried all morning, and the whole process was a release for everyone. After Noah was gone, his vet cried, and so did the technician. We all hugged, and it felt so good. I am 43, and this was the first time I had ever been there at the moment of a death. What stunned me was the beauty mixed in with the sadness. All my life I had been afraid of death, and now because of Noah I am no longer afraid. It was his last gift to me.

We continued stroking the fur on his lifeless body as we mused about the mischief Noah was surely up to in his new life; he was already greeting MJ’s parents full of a new puppy energy, darting about the sky free of aches and pains, forever chasing winged rabbits and rescuing angels caught in the rainclouds.

MJ and I stepped into the living room while they brought in the stretcher. It was the largest one they had, and Noah almost didn’t fit on it. As they carried him away we could see all four of his paws peeking out from under the cloth that covered him. With each one of their steps his paws danced, and in a glimpse I thought his front paw might have lifted up for us one last time: “I love you.”

While I watched the sunset last night, now a week later, I felt Noah’s presence. Out of habit I put down his water dish and filled it with the hose. For a moment I really did think he would wander up to it and drink. But he didn’t, and as the sun went down I had to imagine him next to me, panting and looking off in the distance. Oh, we loved Noah so much, so very, very much, and the hole left by his departure is crushing to our spirits, though that may pass in time. He had a real soul and his love was pure. It never wavered. With people, love can grow complicated over time, but with dogs it never changes.

A River Runs Through Me

2013-06-04T06:12:00.000-04:00

It has been a while since my last update. I miss writing. All my attention has been on finishing my latest (and largest) musical composition. I haven't had time to write about small issues as they come and go. It also has been a sad time in general recently, losing friends, or friends losing family members, or people in my support group online who lose their battles with all the complications I so far have been able to dodge. There is a lot of sadness to go around recently and I’m feeling it.

I have a bit of news. My blood tests were mixed. Most were fine (free T4, CBC, etc.), but my testosterone is once again so low that another med change is in order. A pattern is emerging: I test low, then they bump up my dosage. Then I test fine. Six months after that I am low again and they bump up my dosage some more. Then I test fine again. Then I don’t. It's like chasing Alice's rabbit through the woods. I am now taking 2.5 times more than I did in 2009, yet my tests are lower. I don’t know how that is possible. It should be like physics: put something in your body and it should stay in there. I do everything as prescribed in order to reduce the variables, but my tests still graph out like a zig-zag.

But I am hardly a unique case. Replacing testosterone is not easy. And unlike the dudes in the “low T” commercials, I am instead “no T,” meaning I naturally produce zero of this essential hormone. I’m not trying out for the olympics here; I just want enough energy to reach for a book. So it is frustrating, but better than nothing. The few weeks I endured after the second brain surgery with zero T are a constant reminder of what my life would be reduced to without modern endocrinology. I am grateful they are trying.

The other thing I wanted to touch on with this entry relates to the most prominent of my side-conditions: Diabetes Insipidus. This is not the same as "diabetes" and it has nothing to do with blood sugar. It is a rare condition and for some reason people with craniopharyngiomas tend to have it. Diabetes Insipidus (DI) is uncontrollable fluid loss (i.e. bladder filling up with diluted urine) followed by uncontrollable thirst. When untreated, mine is debilitating. In the hospital I drank 24 liters per day just trying to stay hydrated. My mouth was like sandpaper. After a while water made me sick, so I drank lemonade, then apple juice, then a berry juice. I alternated between them, trying to stay ahead of my thirst without being repulsed by the fluids, and all the while nurses continually emptied the bucket at the other end of my catheter.

The hormone I am missing is called Vasopressin. When I take a hit on my nasal spray (Desmopressin Acetate) the problem goes away. But it's important to wait once a day for the "breakthrough" when I feel my body shift back into DI mode. I run to the restroom. I drink big glasses of ice water. And I hate salt. I don't want to be in the same room as a salt shaker. Just water, water, ice, ice. And bathroom stops every ten minutes, then every five minutes. This body flush is important because it is my biggest chance to flush out toxins and feel the swelling in my legs go down. After the breakthrough peaks I take a hit on the spray and in five minutes everything dries up.

Don't lose the little nasal spray bottle, folks. It is the difference between being normal and parking yourself between a water source and a toilet for the rest of your life. 24 liters per day. Always have the nasal spray with you, right?

You can't. It needs to be refrigerated.

So the big rule is don't forget to ask yourself if you need the spray before leaving the house. Don't get caught in a breakthrough away from home. As a symphony musician who plays about 130 concerts per year, I am always asking myself about the spray. Breakthroughs do not happen at the same time every day. The nasal spray is good for 18-20 hours, so I experience breakthroughs anytime. If it's the middle of the night I have to be awake for a few hours while I feel it run its course. That's just the way it is.

A few weeks ago I rushed to get ready for a concert. I had hit breakthrough but the spray was in the fridge downstairs. I finished washing my face, then put on my tuxedo. I checked my watch and rushed downstairs. I grabbed my coat and my oboe bag and got into the car. Halfway to the concert I realized my error: the spray was in the fridge. I needed a bathroom. And I was thirsty. And the concert had no intermission. Just 90 minutes thru Beethoven’s Missa Solemnis. I needed a bathroom every ten minutes. I was forked. (I think my autocorrect kicked in there.)

At 7:30 p.m. I considered my options. All symphony musicians know you can never just “bail on a gig,” especially not this late. Every part is too important. I would need to be on the stage from 8 p.m. to 9:30 p.m., fully able to play. I had a carton of coconut water in my oboe bag, high in potassium, plus as much water as I needed to drink from the cooler backstage. I checked the clock one more time and drank the whole container of coconut water. Regular water hydrates (and then it is out of you) but coconut water has nutrients.

At 7:45 p.m. I went into the men’s room and lost all the fluid from the coconut water. Then I was thirsty, so I drank a big cup of water. At 7:55 p.m. I went back into the men’s room and lost all of that. I was thirsty again but went straight out on stage. One thing I have learned from Diabetes Insipidus is it is easier to be thirsty than to need a restroom.

By the end of the Missa Solemnis I was very, very thirsty and the inside of my mouth was caked. During the 90 minutes I took sips from a water bottle only to keep my reed wet. If I caved into my thirst and took a large gulp I knew that would be in my bladder in five minutes, so I resisted the urge.

After the concert I got in the car, thirsty as ever. Ten minutes to get home. I waited exactly five minutes before downing the most refreshing bottle of water ever. As soon as we walked in the door I went to the restroom and got rid of the bottle of water. Then I opened the fridge and took a hit on the nasal spray, returning the essential hormone into my body. Five minutes after that I felt normal, a new man, a feeling that would comfort me for the next 18-20 hours.

The Foxy Nurse Will See You Now

2012-12-15T10:05:00.001-05:00

Knowing just when to put up a new blog these days is hard. The most immediate dangers I faced are behind me unless the tumor starts to grow back. Medical updates are more general; I have good days and bad days, dizzy days, hot flash days, freeze flash days and sick days that occur more frequently because of my overall condition.

It feels wrong to write a blog every time I have a bad day because there are so many of them. Good days always follow. The other reason I haven't blogged recently relates to how fruitful the past few months have been for composing. I am writing an ambitious 35-minute cello concerto and it takes up all my spare time. Composing music requires a certain abstract mindset that is hard (for me) to nurture to a point where I can produce something good. Composing words is a jealous mistress to the other half of my creative self. Once I get going with words the music usually dries up. With a deadline and a lot left, I don't want to risk it.

But sometimes things happen that are too personal not to share.

I have had two hernia repair surgeries, in 1999 and 2005. I have barely thought about them recently but over the weekend I felt a rip, then a numb pain in my left inguinal area, which is just above the hip. In the shower on Monday I felt a bump down there. If the area had just given way again, I was done playing the oboe for a while.

"Call the doctor," MJ said.

I did. They squeezed me in.

"Drop your pants. Your underwear too," my doctor said.

I did. He performed a fairly thorough examination but could not find a new hernia.

Likely what happened was the surgical mesh I have implanted in me—holding my lower intestine in place—tore away slightly from the tissue to which it was attached. There are no sutures. This has happened a few times, and it always reattaches to the surrounding tissue again. The mesh is a free-floating foreign object under my skin and it shifts around.

My doctor then ordered an ultrasound, which he has never done before.

"Why?" I asked.

"To rule out some things."

I had heard that line of malarky before.

The next day I had the ultrasound. I assumed they were looking for internal hernia tears, but it wasn't until I got to the imaging lab that I read the written order: "Ultrasound: (L) and (R) scrotum."

Yup.

In the waiting room I had a few minutes to think through what was about to happen. Wait ... how are they going to ...

"Alexander Miller?"

A pert technician poked her head around the corner. She asked me to follow her. I did. She was somewhere between 24 and 25 years old, if I had to guess. Attractive. Virgo, maybe. Her wavy auburn hair cascaded just below shoulder length and it danced as she walked. This was very interesting because I am married and baseball square of the hypotenuse.

She led me into the exam room and dimmed the lights.

"I will exit the room now. Take off your pants. Underwear too. Lie on the bed, covering yourself with the sheet."

I did. It had been a week since my last confession. Crikey.

She came back inside with a towel. She closed the door.

"Pull your penis onto your stomach and cover only your penis with the towel. Leave your scrotum exposed."

I did this, then said, "Okay."

She pulled the sheet down and, before I knew what was happening, she slathered a warm, slippery gel all over my scrotum. Then she slid the ultrasound camera slowly up and down, trying to find the correct angle, up and down. It felt good but a moment later my instinct was to be more aware and proper about things. Still, the initial moment was permanently etched into my history as a married man now. The sheer luxuriousness of it had caught me off-guard.

She didn't speak and I tried to put my mind elsewhere. I picked up the reading material I had brought to the waiting room: Carlos Salzedo's "L'Etude Moderne de la Harpe" ("Modern Study of the Harp") where I had been studying details about the complicated harp notation in my cello concerto.

The open page discussed advanced finger techniques for the harp. The first was:

"Aeolian Flux, obtained by gliding in the center of the strings, upward with the 2nd or the 3rd finger, downward with the thumb, the hand wide open without any stiffness."

The next one:

"Aeolian Rustling: The hands, pressing the strings, are drawn slowly across them, fingers close together in the horizontal position."

I clawed to the next page—any page—and read:

"Falling-Hail Effect: by gliding in the center of the strings, with the back of the fingernails; in descending, the palm of the hand inward; in ascending, the palm of the hand turned outward. This sonority is finest when played softly and rather slowly."

The technician finally spoke. The machine was having technical difficulties. We needed to start over.

So far, outwardly, I was doing okay. I set down my reading material and thought about all the men who had gone through this, specifically the men this particular technician had given an ultrasound to. I am sure she had seen everything, every reaction. Knowing men as I do, I am sure more than a few had made jokes—about if they needed to tip her, about if they needed to buy her breakfast—each of them thinking they were being so very original, the first man ever to think of a joke like that. If men have a signature fault it is probably the inclination to mistake crassness for cleverness, or to use these two opposites interchangeably.

As is me, I wanted to be the most evolved of them all, the nicest, the one man who got through this better than all the rest, the one she would remember as the most decent. She didn't speak much, probably for the best, and I didn't either. I did ask a few things about the machine, about anything technical I could think of, but when my questions ran out I just lay there, thinking of as little as possible.

A short while later the ultrasound was over. She left the room. I was happy I had made it through with my dignity in tact. I am sure that the technician, after administering hundreds of these tests, had seen most men develop erections, and I am sure she is then supposed to say something about involuntary reactions if the man starts apologizing. But I say men can control that. I have always been able to. It is only 99% involuntary.

Afterwards, she came back in the room with my checkout papers. She could have led me right out, but instead she made small talk. She asked questions about my brain surgeries and we talked for a while about that. She smiled. The waiting room wasn't busy. We talked about life in the symphony, then I asked her about her job and asked more questions about the equipment. She talked some more, and—probably in my own mind, male that I am—I thought her demeanor suggested a certain amount of respect for me regarding the subtlety of how I had gone through this. Wordlessly, I had passed with flying colors.

She knew during the test that I was trying to treat her like a lady, trying not to take advantage—mentally—of the unusual situation when it would have been so easy to do so. I imagine some men lie back, sigh and develop a stupid grin on their face during a testicular ultrasound, in full view of the attractive technician, not understanding the depth of the faux pas, thinking only of what they were going to brag about at work the next day. My goal was to be decent, to be one of the few who didn't, for her benefit, out of respect for her professionalism, and I know she picked up on this. Technicians are hard workers. We all work hard, of course, and finding small ways to pay simple respect back and forth goes a long way to smoothing over all the other fleeting moments of indignity that leave a sour taste.

Three days later my doctor called. The ultrasound was negative. Negative for hernia, and negative for testicular cancer.

Annual MRI Results

2012-09-20T11:45:00.000-04:00

My annual MRI was this morning. Even though I have not seen the technician's report, I think my Magic 8-Ball says: "ALL SIGNS POINT TO YES" (Yes is good.)

To the ongoing chagrin of my doctor friends, I studied my brain images this morning and they look the same as last year's. The pituitary area still has that darned spot that was the subject of debate at Tumor Board, but it has not changed or moved in almost three years. It shouldn't be there, but at least it is dormant. The sleeper cell in my own brain, perhaps.

Also, the plaque from my "T2 Flair" series of images looks exactly the same.

Long story short, my ongoing issues with dizziness, ennui, yo-yo testosterone and pandiatonicism all likely stem from the medications and hormone replacement therapies, not the tumor itself.

This is both good and bad news. If the tumor had started to make a move, we would have an explanation and a course of action. With a boring MRI result, I have to decide whether to tinker with my meds or just accept things as they are. As I wrote before, it's not so bad, but I know what "healthy" feels like and I'm not there.

Still, I'm not dead—which is a plus—and I have good vision in both eyes which is even better during football season. For now, I'll take it.

Cabrillo 2012

2012-07-28T10:20:00.000-04:00

We are now at the Cabrillo Music Festival in Santa Cruz, and everyone who has not seen me in a year has been asking for an update. In a nutshell, these are the facts:

Next MRI is in a few more weeks. (The last one was 11 months ago.)

The partial retina detach from chorioretinopathy is holding. A few weeks ago a retina specialist checked me out. There is still a scar at the back of my right eye, and along with it a little visual defect. It won't heal, but it is much smaller that the original red dot.

No "brain shocks" at all for many months now. Those may be gone for good.

Managing the diabetes insipidus (DI) is really the hardest part of all this. Every day I go through the cycle of aversion to salt, extreme thirst, "breakthrough" (where my kidneys flush everything out uncontrollably), then the nasal spray with the hormone that shuts the kidneys back down again. If I don't do it right my body retains too much and I bloat up or get sick. It's important to let the breakthrough happen thoroughly. But in flushing myself out I can also become deficient in vital things like potassium or sodium if I am not careful about what I eat. Last night at the rehearsal something was not right. Medium headaches, a "frosty" feeling in my bones, and weak hands.

At Cabrillo Festival 2011, I was determined to make it through the whole thing, strong from start to finish. I did that, but I also had a severe crash (or "body shut down") when I came home. I have certain allowances for managing my hormone replacements, and last year I—um—kind of abused the privilege, turning myself into an indestructible hormone man. I felt great for the festival, but of course I crashed later.

For the past year I have been more sensible about my limits, staying in the center. I pace myself to peak at concerts, sometimes at the expense of rehearsals, but that is just where I am right now, so grateful for a work environment where my colleagues trust me to figure it out. My goal for Cabrillo this year is to play great at the concerts and then not experience any post-Cabrillo crash when we return home. I think I can do it.

If a Tree Falls

2012-05-30T20:49:00.001-04:00

I have opened my heart once again, and to this I say “thank you” to everyone who loves me. I was morel hunting this morning—one of my private passions I don’t need to talk about—and suddenly it hit me how wrong I have been approaching the last few months. My biggest fault is to clench my fists after breaking new emotional ground when in fact these are extremes, intimately combined and yet irreconcilably unrelated.

I have been steeling myself because I had a dogged determination to make it to the finish line of the fall-winter-spring season of my orchestra. Unless I have forgotten something, I have played every single rehearsal or concert required of me since last year’s Cabrillo Music Festival thru the entire main season of my home orchestra in Grand Rapids. That’s a whole year. I have cells of a craniopharyngioma floating in my brain and yet I did my job the same as everyone else, tumor or not. Yay, Ale!

The first few times I passed this test, there were parades. Ticker-tapes! Then, after a while, it got old. I’m jumping through the same hoops. The crowd thins out and I have to find the strength to do this on my own. With dedicated fans watching the same heroic act getting lamer, I get bored too. There is nothing innately fantastic about watching an anemic person get hormone replacement therapy so he can do normal things. Ale washes the dishes and the crowd goes wild! No, it’s not really that good. And yet it is.

People in my same position, diagnosed the very same month as me in 2009, have now notched as many as seven brain surgeries. I had two quick surgeries, one after the other, and since them I have been fine. This is luck, or destiny, or whatever you want to make of it. I get to go morel hunting as recently as this morning, slipping on my long boots, happily stumbling up and down steep slopes of trillium. It is gorgeous, God-given beauty, smelling the apple blossoms and wild ferns multiplying in the deep woods. Not a voice is heard for miles and miles, not a car, just the distant call of birds and the comic chatter of squirrels. I need to be here, so deep in the woods, so close to nothing in particular. I don’t need to be alone, but I need to feel close to the natural order of things for some reason.

I found only one morel today, an old one. I suspected the short morel season was already over and this confirmed it. As I unfolded my knife and cut the mushroom from the ground, I wondered if there were anything of significance farther down, any reason to dig hundreds or thousands of feet beneath that point. Then I looked up and saw only the sky, the clouds, and the glare of the sun that made me look away. Maybe there wasn’t anything up there either. Maybe it was just me kneeling on the damp earth, parting the wet, dead leaves with my bare hands and wiping them on my pants because I didn’t want to get my sweatshirt dirty because it was the one washed the day before. Maybe that was it. The solitude around me thickened like the moisture on the back of my neck. If a tree fell in the forest that day, I would have heard it.

Endocrinologist Visit

2012-05-04T08:20:00.000-04:00

The endocrinologist made the decision to increase my testosterone replacement therapy. We are still going to use the same gel as before, but now the dosage will be doubled. It is strange how it worked so well at first, then steadily tapered off in effectiveness over the past two years. All hormones are critical in their own way, and being without them has given me a real appreciation for what they mean to our normal lives.

I thought I was at the maximum already with the AndroGel and I feared I would need to be transitioned to injections. But I guess—in the words of a Ghostbuster—there is more sliming to be done.

I would love nothing more than a normal amount of energy going forward. I'm so tired of being tired, and I hope this will finally do the trick. There are some big projects on my plate all summer, and lots of work ahead. I can't wait to tackle all of them once I have my levels back in the normal range.

Scoring Low Again

2012-05-01T17:29:00.003-04:00

I have an endocrinology appointment on Thursday but I already know my test results. Last week I popped into a lab for my regular blood work, and since I created an online account with the hospital I can view all the results as soon as they come in. My basic metabolic panel was in the normal range, also the Free T4 test, but once again I flunked testosterone. For almost a year now this number has been low, often way too low.

Testosterone is the primary male hormone, and without it I have no energy, no natural drive or zeal. You cannot "will" yourself to do things (even mental things) when you are depleted of this hormone. The past few weeks have been very taxing, so maybe this explains why a test at this juncture measured so small. But I don't care about the reason, really. I just need to have a certain amount in my system at all times, like a normal man my age, in reserve, so I can tap into it when a concert requires more energy or when I want to stay up all night composing.

Oh, this is so frustrating. I know what some alternatives are, because I read about them last fall, the last time I failed this test. Daily shots in my stomach are one solution. Not crazy about that possibility, but maybe my endocrinologist will instead have me increase the dosage of the gel I smear on for now, or change brands.

It might be more difficult with me because this particular hormone is replaced completely. Some of my other hormones are like supplements; what I take "tops up" what my body doesn't make in sufficient quantities anymore. But with testosterone the artificial replacement starts from zero, because that's where my number would go in about a week without access to the treatment.

What's that song again? "What a man, what a man, what a man ..."

(Shrugs.) Oh well, I'll keep trying.

Two More

2012-03-27T09:26:00.000-04:00

At least it’s always different with me. As a patient, I don’t feel stuck in a rut. I am, more accurately, an evolving set of problems. Like the last few buttery peas on your dinner plate, you want to spear them with your fork and be done with meal. But they slip to the side, scattering into different patterns. Every time you think you have things calculated correctly, something else happens. Life as a patient, every day a little different.

In the last day I have had two more of my “brain melts,” but they were, alas, different than before. Previously (this was over a week ago) they were episodes lasting about ten seconds where the left side of my brain would go numb and I could not hear out of my left ear. They came and went over the course of a few days, and they were basically gone by the time I saw my doctor on a Monday morning. No medications were added, and the explanation of migraines still makes the most sense to me.

But yesterday afternoon I had a single “brain melt” that lasted ten minutes. I can’t be sure of the length because I didn’t time it, but around noon my left ear began ringing loudly, then it went totally deaf, as if I were just smacked hard on that side. I felt dizzy, disoriented. MJ was out on a walk, and—for whatever reason—I turned to Noah and said, “Ruh-roh,” even though humor was far from anything on my mind.

I thought the event would be over a few seconds later (as before) but it kept going. I went onto the couch and put my feet up, waiting for it to pass. When it didn’t pass in the first minute, I seized the opportunity and ran through a mid-brain-melt checklist so I wouldn’t have to think backwards after it was over.

For at least five minutes and probably more, I asked myself, “Okay, wait. Is this really happening? Is half my brain and head numb? Yes, this is really happening. Can I hear out my left ear? No.” I snapped my fingers next to my left ear, then my right. No hearing on my left side. I wiggled my fingers, touching each one in both hands to my thumbs. I closed my eyes, stretched my arms out (while still lying down) and then touched my nose with my eyes closed. I missed and hit my eye, but I always miss. I opened my eyes and stared out the window into the bright sky. One eye closed, then the other. Both fine. I smiled, moved my tongue back and forth. Fine. I couldn’t think of much else to do (and I didn’t want to stand up) so I made up tongue-twisters, like “Rikki-Tikki ate a starchy quince schmaltz tart.” Everything was fine, yet the episode was definitely occurring. About ten minutes after it started, I felt my hearing come back and it was over. I stayed horizontal for another ten minutes, and by then MJ came back from her walk. I sat up carefully and felt fine after that.

The next few hours, my tingly scalp returned. It wasn’t as bad as before, however this morning (about eighteen hours later) it is closer to how it was two weeks ago: very sensitive and painful to the touch. Last night, at some point, I had another one of these brain melts. I was awake, staring at the stars out the window, thinking about words and music, music and words, and I heard the ring in my left ear, then the deafness once again, then the numbness. I was too tired to do much about it, so I just let it pass. If I had to guess, it was about the same length. Ten minutes or so.

Is there anything to do about this? I can’t think of a single thing. I live with a very rare condition (where most are a lot worse off than me) and all I can do is try to minimize stress, take notes, and get on with the non-patient side of my life. What else is there to do?

Doctor Visit Update

2012-03-19T17:20:00.000-04:00

Feeling very sleepy, but everyone wants to know what happened with me at the doctor. (And this is how I write when I don't revise or edit.) Anyway...

There have been no more brain melts today. My scalp now has the slightest tingle left, but it is almost gone. This is the very tail end of the storm. My doctor visit was lengthy, maybe an hour face-to-face, and we talked through everything from a number of different angles: every one of my medications, the history of my brain "shocks" and how they might have morphed into brain "melts," the possibility of this being my first migraine, my diabetes insipidus, my intermittent problems urinating, the variations of my eating and my sensitivity to salt and sugar at certain times ... we covered it all.

Since I am mostly feeling better and am probably on my way out of this particular episode, we decided against adding yet another medication. So I am not going back on the Trileptal, at least not for now. My neurologist may have another opinion on the matter, but for right now it is "wait and see" regarding what to do next. A lot of my issues wind up like this. Something weird happens, then it goes away and we wait to see if it happens again. If it DOES, then it becomes something for us to treat with medication. Right now it is feeling more and more like an extended—but isolated—event.

Looking back at all of last week, the storm metaphor is a good one. A week ago I had the worst problems with my diabetes insipidus: my nasal spray dosing was messed up and (at the worst of it) I experienced massive thirst while my body tanked past capacity with too much water. It was so bad. On top of this, I could not urinate even though I desperately wanted to. For a few hours, crying was the only way to rid my body of fluid. That was last Monday.

As that worked itself out over the following days, these brain melts showed up until they, too, faded yesterday and today. It was all a big storm. An uneducated guess tells me too much "stuff" [<-- technical terminology] was stuck in my body, in my blood, circulating and bloating me, the wrong salty food in my stomach, nothing getting properly eliminated, maybe not enough protein or potassium or nutrients or whatever. I was just too full of the wrong stuff and everything went haywire. I have to be so careful with what I do, straining, eating, drinking, timing doses of hormones ... and all craniopharyngioma patients know what I mean by this. When I get it wrong for too many days in a row my body just becomes a calamity. I can never forget my body is not like a regular person's anymore. I am artificially replacing my hormones now and my body does not react to situations and compensate for them. Ask my body to do too much without micromanaging my dosages properly and I WILL pay for it.

Anyway, it seems to be passing, finally. It was a week of hell, but this morning I rose from an extremely satisfying night of solid sleep, went into the bathroom and—before I was awake enough to realize the significance—I felt the strongest "breakthrough" I had felt in many weeks or months. My body let go of whatever it had been harboring and I could feel the change for the better starting right then.

Last week has been well-documented and, unless my neurologist insists on another MRI right now or a change in my medications, that will be that. I have written down everything I can remember about it (and about what I did and ate in the days leading up to it.) But if this happens again, that will be another story.

So that is a long way of saying nothing is going on, I don't really know what happened, and nothing is being done about it. But, somehow, I am satisfied with the result.

Thank you, everyone! <3

Storm Almost Over

2012-03-19T09:18:00.000-04:00

After my last blog post went up, I had no idea of the outpouring of responses I would get. I have read and re-read my blog several times, and all I can say is it was very accurate, written "in the moment," trying to articulate exactly what was going on. I didn't stop to wonder what anyone else would think about it; my only goal was to document.

To update everyone since then, yesterday was a little better. I had anywhere from one to three small "brain melts" (which I now think is a perfect term for this) but the top of my head remained very sensitive and painful. This morning (after about eleven hours of sleep) I have had none of the brain melts, and the top of my head still has some tingle, but I wouldn't call it painful anymore. It sparkles like a foot waking up after you have slept on it wrong. A big storm has passed through my head and my intuition tells me this is close to the end of it.

I am seeing my primary care doctor this morning, and I may read him key portions of my blog entry because it details everything better than I could say otherwise. Based on how things go, I'm sure my neurologist and everyone else will get letters, and probably it will be time for a new MRI. My last one was six months ago. It was unchanged, and the plan then was to have the next one in a year unless anything strange happened. This passing storm may or may not mean I'm having a new MRI.

Some things to consider: my vision is fine. When my brain melts occur, I do not experience a dimness in my vision, and I don't see flashes of light. Also, I have spoken at length with a doctor friend, casually, and much of what I have gone through—especially the painful scalp—is consistent with the onset of migraines. Any of the signs of stroke or tumor regrowth along my optic nerves are just not there. My tongue moves fine and I can speak with clarity. I can see colors very well in both eyes. The brain melting for ten seconds is exceedingly weird, but besides this there are no red flags.

I have never had migraines before. I know a lot of craniopharyngioma patients develop them (and just about every other condition, har har) so an educated guess is that I will now be going down the path of managing migraines and figuring out what triggers them in my life.
When my more painful "brain shocks" were a problem (they started in 2010) I was put on Trileptal, an Epilepsy medication used to treat seizures. The brain shocks went away (mostly) and I stopped the Trileptal. Maybe now I will be going back on something like that, a medication that will dull the spiky nerve endings misfiring all over my messed-up brain. It makes sense.

I will write a short update after I see my doctor later this morning. Thank you to everyone who is following me down this bumpy road. You mean the world to me, seriously.

Current Symptoms

2012-03-17T10:49:00.000-04:00

I'm not doing very well. This is going to be a short update because it gives me a headache if I concentrate. Part of the purpose of this blog is to write down substantial changes in my symptoms for future reference, so here it is.

Thursday night, at a concert, I felt a sizable event inside my head. It's hard to describe, but it was like one of my "brain shocks" from before, but without any pain. Rather, half my head went completely numb, melting away, as if the left side of my brain vanished for a few seconds. My left ear could not hear anything and I felt the left side of my head just melt. It was so unnerving I froze, waiting for it to pass. It went away after ten seconds or so. It wasn't my imagination; my colleague next to me asked if everything was okay (even though I thought I had been disguising any problem.)

Friday (yesterday) started out okay, but by the time the afternoon rolled around my head pounded. The deaf-ear-left-brain-melting sensation occurred at least ten or fifteen more times. I don't know what caused them. I did nothing but rest all afternoon and evening. By the time I went to bed, another old symptom showed up: my scalp turned very sensitive to the touch. It tingled like a box of Pop Rocks sprinkled under the skin. I wanted to touch or scratch the top of my head, but it hurt to do so. It was like touching an open wound. The last time my scalp felt this way was the fall of 2009, right before they discovered my tumor. I'm not trying to sound the alarms here; I'm just trying to write down what I feel right now with as much accuracy as I can.

I fell fast asleep yesterday evening and slept straight through the night, which is uncommon for me. This morning—Saturday—my scalp is again extremely sensitive. I have a wool cap on because my head gets cold, but the occasional scratch of the wool against the crown of my head hurts. When getting Noah's morning pills, I had the worst "brain melt" yet (that's probably the term I will use). I had to steady myself for a few seconds because I thought I was about to pass out. No pain, just ... OhhhhhNooooooooooooooStoppppppPleasssssse ... and then it passed.

No, I am not going to drive a car today.

As I sit here and collect my thoughts, it just feels like a ton of pressure in my head. Too much pressure, and it hurts to stare at this screen anymore. Sorry for the typos or whatever. I'm going to put on an ice pack to see if it helps. I'm seeing my primary care doctor on Monday. My last MRI was six months ago. Peace out, friends and loved ones. I try to put on a good face when I can, but parts of this journey scare me.

Half Moon

2012-03-14T06:05:00.000-04:00

Most nights I wake and rarely return to sleep. When I do, I rise staring first at the clock, so pleased to have made it past seven or half past, scratching my head first and then perking to the crack of coffee beans downstairs while I run my hand over the still-warm impression on the other side of the bed. This is the exception. Half the time I am up sometime around two, the incongruities of "breakthrough" another reminder what my kidneys would be without sour droplets of medicine sniffed to counteract the side condition I so tire of battling, Diabetes Insipidus.

[Editor's note: Yes, the patient Alexander Miller has been reading Flaubert. Please bear with us.]

This night, now half past three, I let Noah outside when he stirs, as confused as I regarding my lack of sleep despite my tiredness. As I wait for him to roam about the yard, tentatively stepping about the dewy blades of green, I cast my gaze upward to the half moon, noting the dim outline of the darkened semicircle while squinting at its brighter counterpart. My life, I mused. One day as such, then the next as the other. A dove with a shattered wing one sunrise, the first robin of spring the next. Weak, then hale.

The past two days underscored this juxtaposition. Monday I succumbed to tears, weeping openly by the kitchen sink. The water ran into the pots and flowed over the sides as Madame MJ came to me and held me in her arms. I thirsted not for water but for iced water, for ice, and then something bitter and cold, lemons, ice cold citrus fruit, anything to sate the sand on my tongue and the cake around my lips. Yet I could not drink for my body could not take one more drop in it! My insides slapped this way and that with enough fluid to hear it so. Yet the thirst never ceased.

The next morning—Tuesday—I was doctor to the previous day's patient. I rose a new man, eagerly pursuing chores, rid of imbalances that had previously set my mast atilt. I drank when thirsty, attended to private matters without incident, drank water again, attended to private matters again, and on the day went until Madame MJ commented I was in fine fettle, as sturdy as a Picardy farmhand!

One more sleepless morning, now Wednesday, my eyes ascend to the half moon again, looking to one side and then the other—dark, light, dark, light—my eyes resting back on the dark without fail. Another morning at the tipping point, my flesh a touch plump with fluid not yet spent yet my lips already salty, craving the glass of water I must consider carefully before swallowing. I ask myself every morning, "Which half of the moon today?"

Words and Music

2012-03-12T09:21:00.000-04:00

It is strange how my passion for writing slips so easily between words and notes. I don't plan it, but when I feel like I am getting somewhere with either I walk away from one and pursue the other.

For the past month, I have spent most of my spare time composing. I have started in earnest on a new work but I can't talk about it yet. The concept of this large project has lit a fire under me, though. I have no time to write words.

It is the same when it is the other way around, too. Words excite me so much I wonder if I will ever compose another note.

I wonder if it is because my brain can't handle it. I don't mean how this relates to my tumor, but rather how I have felt my entire life. The card catalog of a memory I have, earmarking every day in a way I can zoom back and access just about any point in my life. When I compose or write, the notes or phrases get etched inside me so deeply I lose perspective. I feel physical pain—headaches—when it gets to be too much with the endless patterns of notes in my head never stopping.

I believe I use written words to stop the music's repetition, and I savor the refreshing quality of prose when I come back to it. Likewise (and to a lesser extent) I go back to composing music when sentences I have written reach the stage where they repeat and repeat thousands of times in my head.

Honestly, this is what it feels like. I delve deeply into something until I am almost crazy, then I take an escape hatch to a parallel world. It is the only way I can cope.

More Brain Shocks

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

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

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

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

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

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

A First Time for Everything

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

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

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

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

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

I thought she liked me.

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

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

I decided to follow her.

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

Garlic.

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

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

"Want to do something together?" she asked.

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

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

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

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

What a coincidence, I thought.

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

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

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

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

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

I decided we would stay outside.

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

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

"Okay."

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

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

They were kissing.

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

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

I had no reply.

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

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

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

"Let's go downstairs," she said.

“We’re not allowed down there!”

“Just follow me.”

"What are we going to do?"

"Come quickly!"

I followed.

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

Prrooooowwww!

I felt nothing.

Prrrroooooooowwwwwwww, rrrrrooooowwwowwwwwww!

Nothing.

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

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

"What?"

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

"Saw what?" I asked.

"You saw us kissing!" she hissed.

"Who kissing?"

"Us!"

"Oh …"

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

"I … I … I …"

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

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

"GET AWAY FROM ME!"

I backed off.

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

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

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

She left.

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

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

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

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

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

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

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

Dizzy, Dizzy

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

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

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

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

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

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

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

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

Early Bog #11 (The Dream)

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

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

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

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

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

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

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

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

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

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

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

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

I said, “Love you.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Goal: [Arrow up symbol]

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

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

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

“Okay,” I said.

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

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

“The Student Passport Program?” I asked her.

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

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

“No WAY!”

“Absolutely,” I said.

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

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

“You can DO those?”

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

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

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

“Really? Me?”

“Of course,” I said.

“Wow.”

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

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

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

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

“Thanks.”

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

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

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

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

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

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

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

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

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

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

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

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

"Yes," I said.

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

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

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

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

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

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

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

“Yes?”

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

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

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

No response.

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

“You made it back to bed!”

“Yes,” I said.

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

“Okay.”

“Any luck?”

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

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

“Sure.”

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

Early Blog #9 (Spirit Animals)

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

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

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

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

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

“Okay.”

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

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

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

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

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

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

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

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

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

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

“You saw a fox?” they asked.

“Yes.”

“You live next to woods?”

“Yeah.”

“Okay . . .”

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

“The fox is not there anymore?”

“No.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Early Blog #8 (Peppers)

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

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

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

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

Plus, I know how to dial 911.

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

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

“All right.”

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

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

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

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

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

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

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

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

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

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

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

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

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

Brief Candle

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

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

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

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

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

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

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

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