Month: March 2013

CONTENTS

1. Nothing, Something
2. What’s Wrong With Me?
3. The Bargain
4. Plausible Explanation
5. My Old Life and My New Life
6. Got Cancer
7. Ups and Downs
8. He Has
9. Home

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Nothing, Something

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What’s wrong with me?

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The Bargain

Sometimes I believe, superstitiously, with self-disgust, that I deserved my cancer; that I wanted it; that I invited it into my life.

Sometimes I believe that I traded my old life for my new life, that I prefer to die young and to enjoy some months of carefree play, than earn a real retirement in old age.

Sometimes I believe that I wanted to relieve myself of adult responsibilities, as much as to relieve my pain; that I wanted a second chance to see the world with a child’s eyes.

Sometimes I believe that, while I did all of these things, I knew the price was no less than the total loss of mind and body; and wanted it anyway.

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Plausible Explanation

A plausible explanation is…

• what you give, to yourself, so you can live your life.
• what you give, to yourself, because it’s nothing to worry about.
• what you give, to others, because you can’t be sick.

• what dismisses unlikely explanations such as terminal illness.

• what doctors want, because it’s most likely.
• what doctors want, because it’s fast and easy.
• what doctors want, even if they don’t know.

A plausible explanation is, when it proves misleading,…

• a hollow promise.
• a lie you’ve told yourself.
• frustrating.

A plausible explanation is, when it is transformed into an explanation of what is happening,…

• a relief.
• proves I’m not crazy.
• terrifying.

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My Old Life and My New Life

My old life was a life of disinterest. It seemed there was no joy in it, that I didn’t deserve joy, and perhaps that I didn’t need it.

My old life was a life of depression. I was not successful, working independently. I found a well-paying job, but I felt trapped and worn out. I had a sense of unworthiness and unmanliness, a sense that I could not submit myself to the normal work-a-day world. And I hated myself for it.

My new life is a life of interest. I yearn to exercise, to find adventure, to meet new people, to write.

My new life is a life of disability. I am “disabled.” The government puts money into my bank account. I don’t work. (Am I broken?)

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Got Cancer

Some guy got cancer.
He was given X months to live.
He died.
He failed to heal.
He let himself die.
He did it to himself.
He was negative.

You got cancer
You were given X months to live.
You live.
You beat cancer.
How? Why?
You can do it!
No one knows.

I have cancer.
I was given X months to live.
I lived them, and seven more.
I let myself live.
I will die.
It’s a miracle.
No one knows.

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Ups and Downs

DOWN: I feel sick.

UP: Now we know why!

DOWN: You have an inoperable brain tumor.

UP: But wait, we can operate!

DOWN: Your brain could be damaged in surgery.

UP: But it wasn’t!

DOWN: But you still have cancer.

UP: But it’s treatable!

DOWN: But it will probably kill you anyway.

UP: But you could live five or ten years!

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He Has

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Home

I’m ill. I’m ill, but it’s not a cold, it’s something strange. My foot has been numb for weeks, and then at my Aikido class it stopped working and hung from my leg like a dead fish. I am off-balance. I walk into walls. My head is in a thickening fog and it pounds painfully when I stand up.

Nobody knows why.

Until now. I wake up with a terrible headache and promptly throw up. My wife sends me to the hospital. They don’t know what to do, except dull the pain. She begs for a CT scan and finally I get one.

It changes my life.

I have malignant brain cancer. The neurosurgeon doesn’t expect he’ll be able to operate on my tumor, but then changes his mind. Brain surgery is scheduled for the next day. I wonder if I’ll ever wake up. The tumor is “highly vascular” and prone to bleeding.

But I do wake up.

The surgeon says he removed “all of it”, all of the tumor, but there’s a catch. Some cancer cells inevitably remain, though they can’t be seen. They will inevitably grow into a new tumor, and inevitably kill me, he says. My prognosis is 15 months.

At first, I am overwhelmed by grief. I wander in the cold spring rain, among budding trees, and sob for my short life. With radiation and chemotherapy treatments, I settle into a routine. I recover quickly, gain strength, and in a few months I’m almost back to normal, though still out of work.

But normal, for me, means depressed. I feel anxious and anti-social. One day in August, while visiting friends at their lake house, I can only curse myself for yearning to be alone. Then I surprise myself by walking into the water and swimming away. I think of swimming until I drown, but I come back, cold and tired and sore and hungry, and changed.

The water is my desire, my oblivion. I want only to be in the water, or on the water, swimming, kayaking, windsurfing… I want to exhaust myself, to be dragged down into sleep and rise again stronger.

Winter does not lessen my desire, but it does delay its fulfillment. I struggle with a nagging cough, and the soul-quenching nausea of an increased chemotherapy dose. I think about killing myself, fantasize about drowning myself.

I return to my work as a software developer, part time, two days per week. I regain much of the proficiency I had lost in my absence, but not all of it. More to the point, it doesn’t interest me any more. Once I imagined I would cruise into retirement as a software developer, but those plans mock me now, and I’ve let them fall away.

Slowly, spring comes around, and with summer, a plan: a last grand adventure and folly. I will windsurf from Portland to Bar Harbor over the course of a week. For months, I train and scheme. When I set off in August, I’m excited. It’s around the date my prognosis expires.

Despite enjoying the sights and relishing the exploration of new waters, I fail to cover much ground. After four days, beaten and exhausted, I meet up with Ava in South Bristol and she takes me home. I sleep without regret, knowing I’ll be back.

In September, I resume the trip by kayak. From Bristol to Port Clyde one day, to Stonington the next, I paddle all day and into the night, through all manner of fog and sun.

I’ll reach Bar Harbor with a final sprint, I say. But I’m warned of the worsening weather. The morning is calm. Winds come in the afternoon, but I make Bass Harbor and will cling to the shore from there.

I’ve only reached Northeast Harbor at sundown. I didn’t think it through. I’m in trouble. The winds and seas are high, the shore is steep and rocky, and the sky is dark and moonless.

A wave turns the kayak over, and I fail to roll it up. I manage to get back in, after several failed attempts, but it’s full of water by then.

Part of me wants to press on, however slowly, in sheer contempt of my failure and my life. The choice, I feel, is no less than “life or death”. I decide to live.

Of course, that doesn’t change the weather. I have to get to shore, but I can’t see what’s happening. Finally, I spy a protected pocket of water and paddle up to it, then ditch the kayak and swim. I need to climb up a slope of rock, but it’s slick and slimy. I’m running out of time.

Finally, I scramble up the shore. I’m alive. Still, it takes me an hour or two to find my way to a road, where I am only grudgingly offered a ride into town.

So I live. If ever the choice was clear, between dying on my own terms and wasting away in a haze of painkillers, I made it, consciously, in that very moment.

A part of me believes that I might live. And I am living, of course, on the day that matters today, today. I may yet live for years, or decades, or perhaps only months or weeks. Early in the process of writing about my cancer I noted my habit of making space for a miracle. Gliosarcoma is “nearly always fatal,” for example.

From that seed of hope a new inner peace has grown. I still believe there is a chance that I might survive, but I can accept the stated near-impossibility of that happening, and still live happily in the time that I have.

Though I have no job, though my wife and I are splitting up, I retain within myself an anvil of fate. Whatever comes will be hewn by my own hands, however roughly, with no less skill for being cursed, for being mortal, for being blessed, and with no more regret for being alive.

Something’s wrong, I feel it. I walk into walls. My foot is numb.

I wake up one morning with a terrible headache, and throw up. My wife sends me to the hospital, but they have no answer. She lobbies for a CT scan, and when I get it, it changes my life.

I have a brain tumor.

I wanted an answer to the mystery of my decline. Perhaps I’ve got what I deserve: malignant brain cancer; almost invariably fatal.

The tumor appears inoperable at first. But the neurosurgeon changes his mind. I go into surgery wondering if I’ll ever wake up. I do.

The tumor is gone. My balance improves and my strength returns. But the surgeon takes care to explain that a seed of cancer remains in unseen cells.

I cry. I’ve been condemned to die in a year or two. But with radiation and chemotherapy treatments, doubt cedes to routine.

I remain, as always, a loner. One day, at the lake, I submit to my desire for solitude and swim away. I’m desperate to exhaust myself.

I return changed. My struggle with cancer is recast as a struggle to endure the hardships of adventure and the bottomless solitude of the ocean: swimming, kayaking, and windsurfing. I am dragged down into sleep, but rise again stronger.

I’m trapped in the long winter. Chemotherapy begins to sicken me, and sometimes I feel I’d rather die than feel this way. Technically, I’m disabled. I don’t know what I want to do with my life.

With summer comes a plan for a last grand adventure: a trip from Portland to Bar Harbor, by sea. I start in August, by windsurfing, but progress is slow. I return in September with my kayak.

The last leg is from Stonington to Bar Harbor. I’m warned of the weather but my mind is made up. I can only make it to Northeast Harbor by nightfall, and face high seas and brutal cliffs in near total darkness.

It’s too much. Eventually I’m turned over and almost can’t get back in. The kayak is swamped. If I go on, I will probably die. I might anyway.

I choose to live, though it doesn’t change the weather. I paddle toward the shore, then ditch the kayak and swim. I claw at the slick sloping rock, trying but failing to climb out of the gushing water.

Finally I pull myself up. My feet have been cut by barnacles. My shoes are gone. Flashlight, too. Eventually, I stumble out of the black woods and hitch a ride to town.

Still I wonder if I’ll regret surviving. I face a debilitating decline that would strip me of my very humanity.

My wife and I split up. I failed, for years, to give her the affection she desired. I see that dating may be difficult. What woman would invest her love in a dying man?

I don’t prefer to see it that way. Yes, I could die this year. But every day’s a miracle.

On May 5, 2011, my old life ended. I was diagnosed with a malignant brain cancer called gliosarcoma.

A neurosurgeon removed my tumor the next day. I woke up free of the mysterious neurological symptoms which had plagued me for weeks.

But the prognosis was damning: 15 months. It’s a brutal and nearly always fatal cancer.

Have I no cause for hope?

This is a story of facing death and savoring life. I’ll need a miracle to reach old age, but with time to reflect I have realized the fullness of the life I’ve already lived. And that, by itself, is miraculous.

I have become a better person: more tolerant of life’s many trials, most of them inconsequential. I released my regrets of the past, abandoned grand schemes of the future, and now live in the present. Every day is a gift that I’m lucky to have.

Sometimes I struggle with what to make of this life. Chemotherapy crushed my will to live. I have no job. My wife and I split up. But I find meaning in what “work” I have: writing and exploring, particularly of (and on) the sea.

Soon after completing radiation treatments, I found in swimming, kayaking, and windsurfing a reason to live. They became a consuming passion, and have almost consumed me, more than once.

In fact it is only through facing death, on a kayak trip, that I’ve made the choice to live. Even if it means dying the slow and debilitating death of a brain cancer sufferer.