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Tuesday, March 30, 2010

Neurologist Appointment #1

“Undress down to your undies and put the gown on,” the nurse instructed me. I was in the neuroscience wing, about to see a general neurologist who works a few doors down from my neuro-ophthalmologist. She left the room. I undressed as instructed but chose to leave my socks on. I was cold. I also left on my “hospital socks”, which are the length of my entire leg. I wear them frequently to prevent swelling when I am on my feet a lot. They are made of white material and MJ refers to them as my “Little Lord Fauntleroy socks.” This is funny because I weigh 230 pounds.

I slipped into the gown. I reached in back but could not tie it because a few days ago I separated my right shoulder. When it rains, it pours. Later it popped back into place, but there is still a searing pain if I reach with my arm. I can hold my oboe but I can’t lift higher than my chest. Despite the pain I am literally leaving it for another day because there are just too many things on my plate right now. The problem for this day is the electric jolts in my head.

I had everything prepared – two pages of typed notes detailing my entire history, current medications, and two paragraphs detailing every aspect of my current symptoms, explaining exactly how the shocks seem to occur, how I feel I can minimize their severity by reverting to active rather than abstract thoughts, how bright lights and flashing lights seem to trigger them, and how the worst shocks occur just as I drift into a moment of repose during the middle of the day.

“Fill out the form and describe your symptoms,” the nurse also had told me. She handed me a clipboard with eight pages of questions. As best as I could, I transcribed everything by hand onto the form as she took my blood pressure. I filled in my name, address, date of birth, sex, primary care physician, address and phone number of my primary care physician, current medications (seven different ones, listing all dosages and frequencies), previous surgeries, etc.. It also asked for the addresses of the surgeons who performed not only my brain surgeries but also both my hernia repair surgeries in 2000 and 2005 and my left knee arthroscopic surgery in 1999. I fumbled for my iPhone, searching for this information to transcribe onto the form. I found most of it and scribbled it in as rapidly as I could.

As I turned over the fourth of seven pages (and with my hand cramping up) a question now asked why I was here today. I began writing “brain shocks” when the nurse took the clipboard back from me and said the doctor would finish writing the form with me during the appointment. I never saw the form again.

As I sat on the padded table (having improvised a one-handed knot on the hospital gown) the door swung open and the neurologist walked in. Finally, just me and a neurologist. He looked young, possibly a little cocky, but he exuded intelligence. We exchanged pleasantries, and when he found out I played in the symphony he proceeded to give me a run-down of the best and worst concerts of the past season.

He asked me questions about my medications, about my life, and about how well I can focus.

I found myself talking about my thinking patterns in ways I have never discussed before. I said, “Well, things repeat in my head a lot. It can be the sound of someone’s voice, a musical phrase, a taste, a moment on film. It keeps repeating and repeating until something else takes its place.”

“Do you have OCD?” he asked. “Obsessive Compulsive Disorder? Been diagnosed with that? Anything like that?”

“Never thought of it that way, because I don’t think of it as a problem,” I said. “From an early age I knew I had a compulsive streak. And I knew it would never go away. So I learned how to channel it so I can focus. You can let a compulsive streak ruin you, or you can use it as a tool for something like intense concentration for writing or composing. I think it ties into my memory. I can play an entire symphony from memory the week we are rehearsing because it plays endlessly in my head, over and over, day and night, until the performances happen. And then the next thing takes its place. I always tell people I have a ‘tape loop’ in my head. As long as I keep channeling good things onto the tape—great music, beautiful words, an interesting image, a Chateauneuf-du-Pape, a morel mushroom fried in butter—I’m fine.”

He scratched “OCD?” into his notes.

“So what about your current symptoms?” he asked.

I replied at length. I talked for at least five minutes, going into every detail about the shocks in my brain. I finished with, “I realize the Internet is filled with faulty information, but—in desperation—I’ve been searching for answers. The only thing I have found relates to people going through withdrawal from drugs like Ecstasy, and that’s definitely not me.”

He sat back and studied me for a minute. “I’ll be honest with you. I don’t know what you have. Do you experience the shocks as little clusters? Five or six at a time?”

“No. It’s always a singular event. One massive shock, assuming I couldn’t see it coming. The next one happens anywhere from ninety seconds to fourteen minutes later. I time them.”

“Are they happening now?”

“No.” I looked at the clock. “But this is prime time for them. They might start soon.”

He said, “There’s a very rare disorder called ‘Exploding Head Syndrome.’”

“Like in ‘Scanners’?”

I think I got a smile. He continued, “But that is during the first phase of sleep, and it’s a loud noise that wakes you up.”

“I don’t hear a loud noise. It’s an electric jolt, very painful, as I transition to more of a dreamy state.”

“I want to look at your MRI again,” he said. He went out of the room.

Almost as soon as the door closed, I felt it. The ear ringing increased and a high pitch vibrated along the top of my scalp. I thought, ‘If I close my eyes and drift off for a moment, thinking of how tiiiiiiiirrrrrrred I am.’ Nothing. I thought of the Wicked Witch telling me: “Sleep, sleep.” I thought of the poppy fields. I was drifting away . . .


I jolted up. It happened. Just as I knew it would.

He came back in the room.

I told him, “It’s happening right now. I just let one happen.” And, again, I explained the phenomenon.

He thought for a moment. “I want to try something.” He dimmed the lights. He pulled a light from his pocket and pointed the light at the door behind him. “Look over there,” he instructed.

I did. I heard the buzzing along the top of my head intensify.

He shone the light directly into my left eye, holding it there for several seconds. Doctors do this all the time and nothing ever happens.

Yet this time it was different. I felt as if suddenly I was falling into the light, my head shrinking until it fit inside the lit tip of his pen. Inside, it was like traveling through a wormhole faster and faster, screaming through outer space at light speed. The electrical impulse detonated in my head. I sucked the air out of the room and threw myself back onto the table.

I shook it off and looked at the neurologist. He gave me a knowing nod of his head in return. Without a word he ran through the rest of a basic neurological exam, checking reflexes and responses. When he was done he sat and wrote.

He said, “I want you to try something first. I have to be careful about saying what I think you are experiencing, because once I say the word it sets off alarms.”

“Does it rhyme with ‘leisure?’”

He ignored that and said, “First I want you to try a small dose of a new medication and see if it helps at all.”

I had never heard of the medication before.

He continued, “I also want you to get an EEG and another MRI.”

“I just had an MRI. Less than a month ago right here.”

He shook his head. “I know, I know. The MRI they did scanned only for your tumor. They usually do everything, but for some reason they skipped the “T2 Flair." That’s the part I really need to see.

I exhaled. “Okay.”

"So get started on the medicine and in a few days you will be contacted about setting up another MRI and an EEG.  In a few weeks you'll be back here seeing the neuro-ophthalmologist, and he will build on what we've begun today.  We won't jump to conclusions, but do take the medicine to see if it helps in any way."

A nurse took a blood sample from me and escorted me out.  In the parking garage, I checked my messages and then typed the name of the drug into the Google search engine on my iPhone.  As the page loaded on the screen, I saw the same word repeated across all the entries: EPILEPSY.

Monday, March 29, 2010

Going to see Neurologist

I'm leaving in about an hour to see the neurologist who works closely with my neuro-ophthalmologist. I am definitely going into this appointment PREPARED. Despite everything I have already been through, this will be my first appointment with a general neurologist, so I don't know quite what to expect. But I'm ready to be very articulate regarding my current symptoms.

As a funny side note, the phone rang recently. It was someone from the office of the original neurologist (the "best in town" according to my surgeon) trying to set up an appointment. Ten days ago, this person offered me an appointment on July 19 for the electric shocks I experience in my brain every afternoon. We didn't schedule anything and she said she would do some checking to find a way to work me in "much sooner."

Now ten days later, she is finally calling back to inform me she found an available time slot! The date? July 26.

I'll see what the other neurologist says today.

Friday, March 26, 2010


It’s nice to know I have people cheering me on as I navigate the frustrating red tape of getting face time with the right doctor. Last year my main concern was taming my cough-variant asthma (still a concern). I remember the same frustrations. Now that the stakes are higher and the specialists drive better cars I thought the path would get smoother. It didn’t. It feels the same.

I received a lot of comments yesterday about how to get what I want from the juggernaut of organized medicine. In a nutshell, I need to be more assertive, to reach through the phone, shake the gatekeepers and scream, “I demand compassionate care now!” Maybe my soft approaches come from repeated viewings of National Lampoon’s “Christmas Vacation” where my favorite character – Eddie Johnson, played by Randy Quaid – has a line that sticks to me like Noah’s hair when he sheds: “I don’t want to impose . . .”

But it worries me that if all patients consciously assert themselves more when navigating the phone maze, then this heightened dynamic becomes the norm. At this point a “normal” approach would appear less urgent to the call-taker and therefore not as important. Heaven forbid, a subtly worded request spoken in a calm voice would receive no attention at all.

We all need to chill.

Just think what it would be like if everybody chills. Imagine lots of Miles Davis look-alikes walking through the halls of hospitals, gowns open in the back, tooting pianissimo notes. If everybody chills, just a slight affect in one of those Miles voices would command attention. Think of it!

“May I help you?”
“You need to see a neurologist for serious symptoms?”
“Would you like an appointment scheduled?”
“How about July?”
“. . . mm . . .”
“No? July isn’t good?”
“. . . ehh . . .”
“Goodness! HOLD ON! Let me fix that!! How about tomorrow?”
“Yeah. That’s cool.” 

Just think what that would be like. But I know I am dreaming, and everyone who knows me knows I am a realist who doesn’t waste time fretting about the way things SHOULD be. I deal with the way things ARE. I try to act the way I wish everyone else would act. (I think the Bible has a quote to that effect.)

More accurately, I would say my even-tempered approach is due to the fact that the medical behemoth I have been patronizing recently has also demonstrated surprising nimbleness. For example, when I first experienced vision trouble (I had to wear an eye patch for a concert of James Bond music) the results of my first visit to an ophthalmologist put me on the fast track to see a “hard-to-get-into” neuro-ophthalmologist the next day. This yielded an MRI that night, which got me an 8am phone call the next morning, which led to a face-to-face visit with the best neurosurgeon two hours after that, and a few days later an anesthesiologist was asking me to breathe into a mask so they could perform brain surgery. It was a well-oiled machine, and without the medical juggernaut I would have been permanently blind in another two weeks. The medical community here demonstrated incredible virtuosity during my most critical moments.

Yet all of the above happened in as much time as it has taken me – with great frustration – to book any kind of appointment with a good neurologist. So – perhaps – there is mass incompetence out there or – perhaps – my brain jolts rank less urgently than the scores of other neurological disorders scattered amongst the millions of people in West Michigan or – perhaps – it is a combination of the two, a side-effect of a blooming industry that still needs tweaking in customer service as it expands one block at a time through our old downtown where a hundred years ago a small apothecary stood in its place.

This morning my primary care physician squeezed me in for an urgent visit. He took note of my symptoms and, right away, he went to bat for me. His assistant followed suit with some heroics on the phone, and early this afternoon they called to inform me I have a time slot with the recommended neurologist who works closely with my neuro-ophthalmologist.

The appointment is not in July. It is Monday afternoon.

Thursday, March 25, 2010

Phone Tag

I still do not have an answer to – or even an appointment regarding – my continuing “brain shocks” that have plagued me for the past twelve days. The shocks vary in intensity and, to be fair, some days are not bad. The nice part (if there is one) is the absence of pain leading up to or following the shocks. The worst part is not the jolt itself but the location of the jolt. The brain is the part that senses pain and figures out how to compensate. If the brain itself is in pain, perspective is lost. (Note to self: is there a song in there? “My brain in pain ex-plains why I’m in-sane.”)

I dealt with serious hernia pain for six years and – though much worse and chronic – it was just that: pain. You can hit the rest of my body with blunt objects and I can take the pain. But something going wrong inside head, where I produce thoughts and dream up music, is unnerving.

The worst part is – though random – the shocks seem to occur when I am in more of a dream-state, when I am imagining things, when I am relaxing or when I am thinking abstractly. Last week, when MJ and I were off the grid, I had plenty of opportunities to relax and heal. Yet I was afraid to let go into complete mental rest (and justly so, if you read on). If I did this, I was more likely to take a major shock.

I can sense the big ones coming. My left ear rings loudly and the pitch makes an eerie downward glissando with an exponential crescendo until it explodes with a sudden electric jolt. It feels like a sadistic guard monitors me and uses a cattle prod to punish me for relaxing. Nights are okay, but during the day I must really keep on my toes. When I hugged MJ once, pausing for a moment to feel that simple sensation of oneness between people who love each other, my brain took a major zap. How bad is it when you fear putting your mind into that vulnerable state which allows you to feel love? For me, it is that bad.

Ten days ago I explained this to my neurosurgeon. He understood and referred me right away to whom he thought was the best neurologist in town.

I waited for my file to arrive at the neurologist’s office. They called my answering machine and I called theirs back. After more phone tag, I finally spoke to a person.

“How soon can I see the neurologist?” I asked.


“That doesn’t work for me. How about tomorrow? Is tomorrow good?”


“I’m not feeling the love here,” I said. (Maybe I didn’t say that?) I think I said, “I had a brain tumor taken out a few months ago and I’m suffering from some strange neurological attacks. You know, like, ‘ka-POW! I’s gonna blow ya head off. Ka-POW!’ Like that. The note from my neurosurgeon explains how serious this is. Are you certain the neurologist has seen my file and does not want to see me until July?”

“Let me get back to you,” the woman said. “I’ll do some checking and will find a time much sooner.”

“Great!” I said.

I never got called back.

In the meantime, friends in the medical field suggested other names for excellent neurologists. But I first need a referral, so I called my primary care physician. I explained everything to the woman answering the phone.

She was very understanding and said, “Your doctor is not in today but he can call you first thing in the morning. You can discuss this with him over the phone and he can make the referral right then.”

“Great!” I said. I added, “I can also be there in person first thing in the morning. Does he have an opening then?”

“Yes, if you want.”

I said, “It’s probably easier for me to be there in person to make sure he understands what is going on. I live close by. It’s very easy for me to be there.”

She said, “We could do it that way, but it’s just as easy if the doctor simply calls you first thing in morning about this. I’m making a detailed note for him. You’ll be called just before 8am and right after that we’ll have you in touch with the neurologist.”


I hung up the phone. It was 3pm, and I left the house to rehearse the Walton violin concerto with Midori.  During the rehearsal my brain was shocked two or three times.

At 6:30pm MJ and I returned home in between the two rehearsals to feed Noah. My answering machine was blinking.


I pressed the play button.

A strange woman’s voice spoke into the machine. “Hello? I have a note here someone has left me saying . . . I think? . . . you want your doctor to . . . call you? We don’t usually do things this way and I would need to ask you some questions to clarify something before I can leave this note for him . . . Please call me back.”

I dialed the number.

A message played: “Thank you for calling. The office is closed. If this call is of a routine nature please call back during regular business hours. If this call is regarding a life-threatening emergency, please hang up and dial 911.”

I hung up the phone.

We left again to rehearse more of the Walton violin concerto with Midori.  Four more shocks.

We came home at 10:30pm. No more messages.

This morning I woke up at 7:30am. At 7:45am the phone did not ring. At 8:00am the phone did not ring.

At 8:15am I dialed my primary care physician.

“Hello?” a new woman’s voice answered cheerily.

I began to explain and quickly deduced there was no note of any kind left anywhere. The person working yesterday was “filling in.” Yesterday was yesterday. Let’s start fresh today, shall we?

“So what is this concerning?” the new person asked.

I Explained. At. Length.

“Oh, then let me put you through to the voice mail.”

“DON’T!” I asked nicely. (Voice mail informs you to “please allow three days” for someone to get back to you.)

“Okay,” she said.

“Does my doctor have any openings today?”


“Can he call me? This is just for a referral. He specifically told me referrals can be done with a quick phone call between us.”

“Okay,” she said.

“So can he call me?”

“I’ll leave a note for his medical assistant to give to him to call you.”

This sounded eerily familiar, but it was as far as I was going to get.

And as of this writing, I have not received a call.

Wednesday, March 17, 2010

New Symptoms

Monday morning I visited with my neurosurgeon and had a thorough discussion about my recent MRI. I spent more than an hour with him going over every detail. He is a terrific doctor. When you are with him you are the only thing that matters in his world.

During the appointment I found my own MRI-reading skills called into question. It seems doctors are better at interpreting scans than patients. Imagine that. For example, I pointed to a suspicious white smear where my tumor had been.

I said, “But what about this spot under the optic chiasm?”

He responded, “The optic chiasm is farther back.” He pointed. “Where you’re pointing is actually the rear of your sinus cavity. The white is excess fluid.”

“Wait. You mean snot?”


With my tail between my legs, we continued.

The bad news was the tiny speck from before is still there. I thought it looked bigger, but the surgeon (as well as a neuroradiologist from Tumor Board) think it's about the same or possibly smaller. The long and short of it means the speck hasn’t done much in four months, and this is great news. The neurosurgeon’s job is to take care of the craniopharyngioma. He did that.

But I still have other troubling symptoms: intense ringing in my ears (mostly left), dull pain behind my left eye, tingly scalp and these very painful shocks in the left side of my head. The shocks were at their worst on Saturday, but they happened again Sunday and Monday. Yesterday (Tuesday) I experienced them very mildly and so far there has been just one tiny one today. The left side of my face feels numb, but I can move my facial muscles just fine.

The new MRI—while providing good news about my tumor—also opened a can of worms in another area. There is a suspicious spot in my left frontal lobe, a very distinct bright white slithery eel shape that is consistent across all my scans.

“Plaque,” he said. “Or a lesion that could be related to something like migraines or multiple sclerosis (MS).”

I said, “I had my first MRI in October because they suspected MS. They thought my eye trouble was optic neuritis, which can precede MS. The tumor showing up on the scan was a big surprise.”

“Well,” he said, “This still wouldn’t be of immediate concern unless you have symptoms like dizziness.”

“I’m dizzy or disoriented all the time,” I said. “When I rise out of my seat for applause after performances, I need to grab the music stand sometimes. Occasional dizziness is a big problem for me.”

He said, “Others have trouble with arm numbness.”

“I have that too. Right now, I can’t feel two of my fingers. That’s been an on-and-off problem for three years.”

He wrote for a long time.

I added, “And these sudden electric jolts are a recent thing. They’re extremely painful. They don’t last for more than a second, but they keep happening out of the blue and I don’t want them to get worse.”

He said, “Then you need to see a neurologist for a broader assessment. Your tumor is under control, and I don’t think a tiny speck of a benign tumor would be causing these other issues.”

My case file and all my scans have been passed on to the best neurologist in town (according to my surgeon) and I will be seeing him in the coming weeks. But if things suddenly get worse I am sure I will be seeing him in the coming minutes.

In the meantime, MJ, Noah and I are enjoying a week off with nothing but rest, which of course is the best medicine.

Sunday, March 14, 2010

Shock It To Me

I have my appointment tomorrow with the neurosurgeon, and I will write an update soon after that.

But in the meantime, a new thing cropped up: electric shocks in my brain, and I am not overstating that. Yesterday, for about a three hour period, I experienced sudden (and fairly severe) electric shocking sensations inside my head on the left side. I timed them anywhere from 90 seconds to 14 minutes apart. The shocks lasted less than one second and nothing seemed to trigger them. If anything, it was the act of drifting off into a nap that preceded the jolts. One was so severe and so painful I leapt up from the sofa and yelped which almost gave MJ a heart attack. But they faded away and by last night I was feeling well enough (cautiously) to don my tux and play a pops concert.

I slept well and this morning I have not noticed any more of them. However, there is a noticeable pain behind my left eye and my left ear rings endlessly. Again I feel well enough to play a light concert this afternoon, but I will go into my appointment tomorrow morning with all these questions in hand.

It was quite a scene yesterday: Noah (our dog) lying on the floor yelping from some kind of joint or muscle pain, and me lying on the couch waiting for the next sensation that my brain was being zapped. ("Don't tase me, bro!") MJ had her hands full with both of us!

Thank you for reading, everyone. Hopefully I will have some answers by tomorrow afternoon.

Wednesday, March 10, 2010

Diabetes Insipidus

The next big date for me is March 15 when I meet with my neurosurgeon to go over my MRI and discuss strategy. I haven't seen him yet because 1) there is probably nothing to do at this juncture and 2) we are waiting for Tumor Board so everyone can disagree about my case again.

In the meantime, I have settled into a routine with the new medications and hormones. There is something artificial about all of it, though. I have dreams that I am dead but — like in H.P. Lovecraft's "Reanimator" — I take a serum to animate my body and pretend to be living. It sounds creepy, but it's my way of coming to terms with the new relationship between my brain and the rest of me. There is a "delay" now where things don't work seamlessly. But I am getting used to it.

Also, in a few weeks I will meet with the endocrinologist to measure hormone levels and discuss strategy. I have a feeling something will need to be done about adjusting for "stress level" hormones before performing. So far I have not been able to play full-length classical concerts. Something in me gives out. It's not the same as exhaustion or over-stress. Rather, I have used up everything and have no choice but to lie down with ice. I’m spent like a wind-up toy that won’t move anymore. This is where endocrinology gets tricky, but I have hope we can tinker with my case so I can feel normal on stage for a whole Brahms symphony. After that, I’ll find a way to do Bruckner.

My diabetes insipidus is the most prominent of my new conditions and also the most entertaining. Previously, I lived with a mild version of it and did not even know. I found out when I was in the surgeon's office before the second surgery.

He said, "People with pituitary area tumors often have diabetes insipidus. Do you?"

"I don't have diabetes," I said.

"No," the surgeon said. "Diabetes insipidus is different. For example, do wake up a lot during the night to use the bathroom?"

"Not really," I replied. "Five or six times, but no more than that."

Not only did I find out this is not normal, but after the tumor's removal my case went from mild to severe. Before, I was popping in and out of restrooms every hour, but now (untreated) I need to drink twenty-four liters of water every day just to keep ahead of the fluid loss. My condition is so severe I must constantly be near a water source or my mouth will become dry and caked within ten minutes. It can be frightening.

Yet I see the good in everything, and there is good in this too. As all my friends know, my main hobby is gastronomy. I will cross continents to seek out unusual delights. On my honeymoon I drove a very patient Mary Jane 280 kilometers one afternoon just to taste a famous liver fried with rosemary. At home, I hunt morels endlessly in the spring. I love wine. I eat live fish at Japanese restaurants. My favorite meat is squab. I love gastronomy and I am always seeking the ultimate experience.

And through my diabetes insipidus I have found it. It has been in front of me the whole time. Simple, plentiful, and free. Here it is:

Extreme thirst + massive amounts of freezing water = the ultimate bliss.

The greatest gustatory sensation I have ever experienced was in the hospital when I would wake up with a mouth so dry I could not speak. I would call for a nurse and she would bring a large Styrofoam cup filled with ice and water so cold it could have come straight from a polar floe. I would latch onto the straw and inhale an enormous quantity of water before gasping for air and then drinking again as quickly as I could. The faster the intake equaled the greater the relief, and the return was exponential.

It. Was. So. Satisfying.

Now that my condition is treated with a nasal spray once a day, I miss that extreme thirst and extreme blast of ice water. But I do get a little taste of it as I wait through daily “breakthrough urination.” I have an hour every afternoon with sudden fluid loss and I eat a grapefruit and sip sparkling water to balance things before I hit the nasal spray. It’s a moment of imbalance, but nothing close to the immense satisfaction I felt in the hospital.

I used to wonder if (as a wine lover) I would ever have the occasion to drink something like the 1947 Cheval-Blanc or the 1945 Mouton. Probably not, I would guess, but at least now I have tasted something just as good.

Tuesday, March 2, 2010

I Will Survive

Ever since my unusual diagnosis of a craniopharyngioma brain tumor, I have used the Internet and Google endlessly to find scraps of information. It is not a common condition (especially for an adult) and more than anything I want to share my experience with similar patients and hear their stories too.

At one point I found a site where adult craniopharyngioma patients described themselves as "survivors". With all due respect, I have never attached this label to myself. Patients of benign brain tumors with survival rates above 98% are not in the same category as what I consider real survivors: those who have beaten a deadly disease or cancer. I've had friends die of cancer, some very young. My mother died of an aggressive brain cancer four years ago. I saw that up close, and that was very hard to watch. My benign lump of tissue is just not the same as her glioblastoma.

If I am a craniopharyngioma survivor, then I am also a hernia survivor (twice) and an arthroscopic knee surgery survivor. Maybe I am also a trans fat survivor from my days in New York scarfing down hot dogs off the street. Quite seriously, survivors are the people facing long odds who find a way to live and beam love despite what has happened to their bodies. They have my utmost respect.

I continued my search online a few weeks ago, looking for people with whom I could connect on the Internet to share stories about craniopharyngiomas and their recurrence. Most often I found websites created by parents for their child. (Craniopharyngiomas are most commonly found in young children or in adults older than sixty.)

But I finally found a patient like me: Male, thirty-eight years of age (three years younger than me).

I called out excitedly to my wife, and I heard her come down the stairs as I began reading his blog. A few moments later my face changed.

MJ came into the room and asked, "You found someone your age with your tumor?"


"Send him an email."

"I can't," I said.

"Why not?"

"He died."

After that day I started thinking about things differently. Before, the thought of a "safe" brain tumor such as mine was an easy way to maintain my sense of humor and not deal with immediate concerns about mortality. But a 98% survival rate (in one study) still means 2% of the cases did not survive. I began worrying that I would be in the minority just like the man whose blog I stumbled upon.

Many times I have been in the 1%. When I had my hernia repair, I became one of the 1% of patients who are saddled with chronic pain for years afterward. I had a second surgery to fix that, but then I was one of the 1% of patients who have internal bleeding and all the complications associated with that. I always seemed to find myself in that 1%; I am always the one patient who is the exception. Or so it seems.

Yet once when I lived in Melbourne as a six- or seven-year-old, the cold water tap in our shower somehow became dangerously electrified. When I turned the water on it shocked me so greatly I remember being thrown back. A repairman came later, and he determined the electrical current was so strong that had there been water running or had my foot been on the drain I would have been electrocuted. My odds were not good that day, yet I survived. Even younger, when I was three years old in Mexico, I was hit by a car. One of my legs was broken and my skull was fractured. My odds were not good for surviving that either, yet I did.

There are so many people I have known -- and I mean people my own age -- who are no longer alive. Several from my own high school graduating class did not even make it to forty. I have known many people younger than me who have died of cancer, died of AIDS, died in car accidents, or died because they were unlucky enough to have booked a seat on Pan Am flight 103 (which crashed over Lockerbie, Scotland when a terrorist bomb exploded). I have taken some bullets in my own life, but I have dodged plenty of them too.

As I have thought my way through this, it is obvious that it is pointless to consider your own odds. What good does that do? Seriously, how can that help you at all? Once you become consumed with things on that level, you are using up time you could be living, loving, holding someone's hand, dreaming up music in your head, playing frisbee with your dog or photographing the buds on the trees. Would you rather do any of those things or would you rather be doing math and worrying?

Recently I received some great advice from a high school classmate who is a cancer survivor. She wrote to me:

"As a fellow survivor, PLEASE don't ever look at or consider timelines or studies. They are averages based on years of research. You and I are on the recent side of those years of studies and we make up the positive change. Live on brotha!"

Hear, hear! Here's to the survivors. Myself included, but modestly.