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Wednesday, December 21, 2011

Visit with Retinal Specialist

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

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

Diagnosis: scar.

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

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

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

Early Blog #7 (The One with the Llamas)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

"Sounds great."

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

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

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

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

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

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

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

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

Tuesday, December 20, 2011

Early Blog #6

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

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

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

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

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

"Tobacco user?"



"Oh, yes," I said.

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

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

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

"Two, three glasses of wine with dinner."

"Okay. Any more than that sometimes?"

"Usually," I said.

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

"Any thoughts of suicide?"

"No, not for a while."

He studied me closely again.

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

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

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

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

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

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

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

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

"Oh, God," I remember saying.

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

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

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

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

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

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

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

Monday, December 19, 2011

Early Blog #5

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

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

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

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

It made me dizzy.

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

The world turned upside down.

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

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

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

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

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

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

"Sure," I said, groggily.

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, December 18, 2011

Early Blogs #3 & #4

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


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

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

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

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

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

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

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

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

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

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

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

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

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

"Is the surgery over?" I asked.


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

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

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

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

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

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

Saturday, December 17, 2011

Early Blog #2

Saturday, October 3, 2009, 6:06am

Saturday morning. Two days until surgery.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, December 16, 2011

My First Blog

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

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

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

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

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

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


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

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

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

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

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

“Okay,” I reply. “Brain tumor. You?"

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

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

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

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

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

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

Peace, Ale

Monday, December 12, 2011

The Puppy That Wouldn't Wake Up

Before my medical update, here is a short memory:

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

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

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

“He's not sleeping?”

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

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

Got it.

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

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

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

“Can we assassinate people?” one student asked.

“Yes,” Mr. Price said.

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

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

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


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

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

“Okay,” we said.

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

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

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

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

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

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

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

“No,” he said.

“Lemme see it!” I pressed.



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


I walked over to Nation Three.

“Can we have foreign aid?”


“Foreign aid. Give us money.”

“What for?”

“You know. Stuff.”



I walked back to our colony.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

Friday, December 9, 2011

R Is for Pirate

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

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

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

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

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

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

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

Thursday, December 1, 2011

My Mother's Kiss

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

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

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

Until I remembered something this week.

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

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

"Take one each, children!"

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

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


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

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

I raised my hand.

"Alexander? Come to the front, please."

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

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

I conducted the whole piece with my triangle beater.

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


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

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

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

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

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

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

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

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

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

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

"What did you think?" I asked her.

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

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

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

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

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

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

Friday, November 25, 2011

The Yellow Turkey

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

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

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

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

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

Sunday, November 20, 2011

Of Perfection, Roller-Coasters and Punching Kittens

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

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

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

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

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

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

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

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


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

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

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

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

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

Thursday, November 17, 2011

Welcome Back, Dot

The red dot is back. Just like that.

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

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

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

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

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

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

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

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

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

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

Saturday, October 29, 2011

Not 90% the Man I Used To Be

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

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

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

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

... And this reply by "hubbyforher":

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

... And sexymom replies:

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

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

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

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

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

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

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

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

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

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

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

Wednesday, October 19, 2011

Low Numbers Again

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

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

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

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

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

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

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

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

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

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

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

Friday, September 16, 2011

In the Clear

Good news, everyone.

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

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

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

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

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

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