May 2011 - My Brain Cancer Diary

Day 0

When my wife saw the scan, she knew.

It was cancer.

The doctor asked her to come across the hall. As I sat in my bed I could see her, beyond the curtain, shrink with terror. She brought her hand to her face, closed her eyes and trembled.

The doctor returned to my bedside, sat down, leaned in close and said “We’ll take good care of you.”

The CT scan had saved me, and cursed me. I suddenly became a cancer patient and a subject of tender care. What before that? A dopey drug-seeker? Head case? Or a man on a run of bad luck who should try to sleep it off?

The scan was my wife’s idea. It became her mission, and it might not have happened without her.

She stayed behind with our son while I took a cab to the hospital at about 4:30 am, after a bout of headache with vomiting. The ER was quiet and lonely. A nurse fed my IV with medications to dull to the pain and settle the nausea. I sat for a few hours.

I heard a young ER doc discussing my case with another doctor. He said I had a “weird affect”. I suppose that was true. It might have been the first time I considered the full measure of my slow decline. I was ill, and showing it.

Still, they sent me home with my stepmother around 7:00 am. That’s when my wife sent me back. She called the ER and described Monday’s neuropathy finding. Were they not aware of it? I might not have mentioned it.

The doctor agreed I should return to the ER, so after resting in my bed at home for about 10 minutes I was summoned to rise. My wife and I left our son at a friend’s house and I returned to the same hospital room.

More sitting and waiting, then a wheelchair arrived to take me to the CT scanning room. Granted, the hospital is like a maze and it’s easier that way, but I was surprised to be treated like cargo. I would have to get used to it.

After a brief scan, the technician said causally she had “found something” and would scan me again after a contrast dye injection. It is hard to describe what I desired or expected at that moment. Not a malignant brain tumor, perhaps, but something real, an explanation. I was frightened and relieved at the same time.

At about 10:00 am, my wife saw the scan. I saw it for myself a few minutes later on the same computer monitor. The tumor appeared as a pale blob, about the size and shape of a chicken egg, in the center rear of my head. It pushed the left side of my brain off center in a grey pool of fluid.

“I’m fucked.” That’s what I said to myself.

The doctor called it a “mass”, but it was quickly promoted to a malignant tumor. Events accelerated. My wife met with a neurosurgeon, who said the tumor appeared inoperable. Even a needle biopsy was ruled out due to the prevalence of blood vessels in the tumor. I had a CT scan of my chest and abdomen. I assumed they were looking for metastasized tumors, and that if they found one, my prognosis would be “dead in a month”.

But none were found. An MRI brought better news: the brain tumor appeared to be operable. The neurosurgeon visited my room on the sixth floor to explain the surgery. It was scheduled for the next day.

Next, a pause. There were no pokes or pinches for a while, so I attended to some business by writing down from memory the master passwords for my server computers. I regretted that dozens of people relied on those servers.

My wife and I sat together in my hospital bed. I picked at my dinner. I said I had no regrets. I reminded her that I did not want to live in a vegetative state. I had said it several times before, and years earlier had completed and notarized an advance directive. It seemed pessimistic then but a good call now. One less thing to worry about.

Night fell, and I don’t remember much after that, except for trying and failing to sleep while my wife lay awake in the next bed.

Neuropathy

My wife contacted our primary care physician on Monday, May 2, 2011. But getting to the doctor was not my first concern. I had made a terrible blunder the previous evening trying to earn some extra money on a side project, and took Monday off from my regular job to fix it.

It’s a nightmare familiar to anyone whose job is to produce or process digital information: lost data. (Lost knowledge, really). In an attempt to connect to my file server I double-clicked the wrong target, which started an automated process that replaced my work of the previous weeks with uselessly old versions of the same files.

I was sunk in despair for a while, but renewed myself Monday morning and set to work. With painstaking effort I was able to recover most of the lost data from the raw disk file.

In late afternoon I pulled away from the stabilized project to go to the emergency room at Maine Medical Center. I probably rolled my eyes when my wife told me our doctor wanted “to rule out a stroke”, but I didn’t hesitate to go.

In explaining my symptoms to the nurses and doctors of the Maine Medical Center emergency room I focused on the tingling sensation in my right foot, which they termed a “neuropathy”. I was surprised to find myself demonstrating a limp and wondered if I somehow embellished it.

The headaches were not yet severe. My numb, stiff lower leg was a worry, but it felt good to be doing something about it. After a battery of basic neurological tests failed to dredge up further problems, they agreed to refer me to a neurologist and sent me home.

Plausible Explanation

A health problem and a plausible explanation make a fine pair. It seems remarkable now, considering my symptoms, that I did not seek medical attention earlier. But I was biased to believe that time heals. One episode, in particular, demonstrates this bias.

I began to study the martial art of aikido in 2006. With regular practice I was able to advance my rank several times, and for years had considered myself comfortable grappling and rolling on the canvas mat at Portland Aikido. In mid-April of 2011 I began to feel a tingling in my right foot. Because there is often impact to feet and legs in aikido, I expected the tingling was a temporary result of striking the mat awkwardly.

The tingling gradually worsened over the next two weeks, but I did not seek an alternate explanation, despite the fact that my wife is a doctor.

On April 30, 2011, Portland Aikido held rank advancement tests. I was not qualified to test for my next rank yet, but as is common I attended the tests to support my partners as an “uke” (pronounced OO-kay), the attacker on whom the self-defense technique is performed.

Early in the run of tests I assisted with a beginner’s 6th-kyu examination. I felt stiff and awkward, but was carried by the force of habit. Then I sat for a while in “seiza”, on my heels with knees forward and back straight, and watched. Again, I dismissed the tingling.

Later I was called to help my long-time practice partner Mike Pindell with his 2nd-kyu test. Our chief instructor called for a kaitennage technique, which has uke tumbling head-over-heels. I rolled well the first time he threw me, but with a few more I was dizzy. Usually I could roll out of a throw with ease and come to my feet, but I fell as I tried to stand. With a second effort I was able to stand on my left foot, but my right foot remained limp and dangling, and I could only stare at it.

“I think I’m feeling a little dizzy,” I said. Two of my partners carried me back to the edge of the mat, their shoulders in my armpits. I sat and rubbed and stretched my foot as the test continued with a new uke.

At that moment I understood I was ill. But I was more concerned about frightening the audience and embarrassing myself. After the tests, I stood and chatted. Many were curious about what happened. I told them, truthfully, that I had suddenly lost control of my right foot. Some had assumed I twisted my ankle. Another suggested an inner ear infection.

“You should see a neurologist”, black-belt Judith Brown told me.

“I think you’re right”, I replied.

As I was leaving the dojo I passed the bench of spectators. Some I knew. Others I had just met. All, I felt, now viewed me nervously.

The time for plausible explanations had ended.

Warning Signs

I thought I had the winter blues. I felt restless, unfocused, frustrated and worn out. I often felt vaguely sick for a few hours at a time. As winter turned to spring, I found it more and more difficult to concentrate on my work as a software developer. I worked more slowly and more cautiously, and was more often confused.

I was depressed. Rather, still clinically depressed after years of treatment with anti-depressants. Yet I had slipped into numbness from a place of stability, in the span of a few short months.

Below is a timeline of health events leading up to my diagnosis. They suggest a trend of worsening mental illness (and peculiarly bad timing for an elective surgery). It’s fascinating to consider the suddenness of improvement in my mood following surgery, and frightening to consider the nearly inevitable decline.

March 11: My prescription for the anti-depressant Budeprion was filled instead with Bupropion due to supply issues. They’re both generic versions of Wellbutrin, but I felt dark and suicidal for a few days after the switch.

March 28: My wisdom teeth were removed. Two of them were impacted. I took two days off work but then struggled for weeks to be productive in a haze of painkillers.

April 1: I wrote to a colleague “I’m operating on about 10 percent brain power.”

April 6: I met with a new psychiatrist. I told him I didn’t feel sharp. I started taking Paroxetine instead of Citalopram.

Mid-April: I began to suffer brief but painful headaches when standing up, and a tingling sensation in my right foot. I occasionally lost my balance and bumped into things.

April 28: My wife and I resumed talk therapy with a social worker.

April 30: I lost muscle control in my right foot after tumbling at my Aikido class, and decided to call my doctor.

May 1: I accidentally deleted days of work. I felt stunned and crushed.

May 2: I recovered most of the deleted files. On the advice of my doctor, I went to the emergency room to rule out a stroke.

May 3: I told my employer that my depression was interfering with my work, and that I might not be able to continue.

May 4: I met again with my psychiatrist. I told him that my depression had worsened. I felt desperate. I was nearly in tears. He prescribed a low dose of the anti-psychotic Abilify.

May 5: My tumor was discovered.

Headache and Vomiting

On Thursday, May 5, 2011, at about 4 a.m., I woke with a terrible headache, climbed out of bed, crouched before the toilet, and vomited. In a moment, my wife was beside me. She insisted I go to the emergency room. I took a cab to Maine Medical Center while she stayed home with our son.

A CT scan revealed a golf ball-sized tumor in my brain. It was removed the next day, Friday, and I went home Saturday.

Since then, my condition has been improving. I feel relieved of the suffocating depression that had plagued me for months. But it remains almost certain that my gliosarcoma, a malignant brain tumor, will recur.

This is the story of my new life.