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Monday, December 16, 2013

Early Blog Post - October 2009

(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.

Thursday, August 15, 2013

Dog Is Love (1 year anniversary re-post)


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 √©lan 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.


Tuesday, June 4, 2013

A River Runs Through Me


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.

Saturday, December 15, 2012

The Foxy Nurse Will See You Now


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.



Thursday, September 20, 2012

Annual MRI Results


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.

Saturday, July 28, 2012

Cabrillo 2012

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.

Wednesday, May 30, 2012

If a Tree Falls


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.