Oct/Nov 2004 Salon

What If I Don't Die?

by Paul Sampson

When you get cancer, you have to ask yourself the ugly question: What if I die?

After you've had cancer for a while, you have to ask another question: What if I don't die?

Lately, the second question has been the one that keeps coming up. I've been through a lot of stages of this disease since my throat cancer was first diagnosed about five years ago. First came devastating surgery (total laryngectomy, leaving me with a ruined voice and a permanent hole in my neck to breathe through). Next I had to move to another city to endure several weeks of radiation that took months to recover from. Then came a second cancer, this time in a lung, and a second surgery. Most recently, the doctors found a third cancer, again in the same lung, and I had weeks of unpleasant chemotherapy. The current stage: getting over the last treatment, and more tests to see how much damage the chemotherapy did to the tumor. (I know how much damage it did to the rest of me.) It now appears that I will need further lung surgery to remove whatever the chemicals couldn't erase.

At each point on this journey, I naturally asked myself what lay ahead. I also asked my doctors. One of the first doctors we encountered (my wife is the other person in "we" throughout this narrative; she has been spared very few of the pains of this illness) was very willing to tell me that "In five years the odds are very good that you'll be dead, no matter what you do." Then he tried to recruit me into a study he was running; apparently I could at least contribute some data to his next paper while I was waiting to die. (We fired him without a second thought.)

When the second cancer was diagnosed, another "healer," a radiation oncologist, told me I had at best six months to live, and offered a course of radiation that would make those months as miserable as possible. We fired him, too. That was a couple of years ago. I have refrained from dropping into his office. Mere evidence doesn't change that kind of mind.

The other physicians, from the surgeon who did the first operation to the medical oncologists who have supervised the recent chemotherapy, have all sidestepped making prognoses, either gloomy or optimistic. The surgeons resolutely say that they "got" all the tumor tissue (and it appears they did; but new ones arose), and the oncologists simply say they don't make predictions. Yet they have given me plenty of lines to read between, and I have been a diligent reader.

The closest I came to getting a prediction out of anyone came when I first discussed chemotherapy with one of the oncologists. She gave me a frank rundown on the side effects I could expect. Some people say, "No, thank you" at that point. I asked, "What does all this unpleasantness buy me?"

"Time," she said. "How much time?" "Several months, at least." "On top of what?"

Here she hedged. She was not going to be pinned down, but neither would she lie. Without making any predictions, she told me that the usual course of lung cancer took a couple of years. "But your case is not typical," she added. "The tumor is small, it's only one lesion, not disseminated, and it's changing very slowly."

So of course I consented to the treatment, which turned out to be neither as bad as I feared nor as mild as I hoped. It was bad enough, though. I should point out that I have never had a day of feeling sick from cancer, or a day of feeling well while being treated for it. But I could not help thinking, as I endured the therapy, that the extra months I was buying were not the best of bargains. Let's see: many weeks of feeling really rotten on the front end of the process, and one assumes a fair length of time feeling pretty miserable at the other end. The middle had better be good.


At some point during all this, my wife asked me directly: "Have you considered that you might be dead in two years?" I said yes, I had. "Have you also considered that you might be alive and well in two years?" I said yes, I had thought about that too, and neither one would surprise me. That shut us both up for a while. But really, either way, you ought to have at least the outline of a plan. Ideally, you should have the same plan for both cases, since the Sages tell us that we should live each day as if it might be our last. Practically, though, I will save the more detailed plans until it's clear I'd better get started on the program.

I used to joke that if I ever got rabies, I had a short list of people I wanted to bite. Now I have a disease that may in fact allow me to indulge in the same sort of fantasy. If you know you'll be dead in a few months anyway, the supposed "deterrent effect" of capital punishment is meaningless. It takes a long time to catch, try, and sentence an assassin, and then come the appeals...

Speaking of appeals, there is an undeniable appeal to making up a little list of "...society offenders who might well be underground," as the Gilbert & Sullivan song puts it. Yes, I've got a little list, but I won't be checking off the names. I will continue to speak out against the unspeakable scoundrels of the political Right in this nation, and I hope it does some good. (Though I doubt that any essay I have written or will write will change many minds or votes. Maybe I should switch to writing bumper stickers and T-shirt slogans. Those seem to be the rhetorical art-forms of our time.)


Anyway, dropping any fantasies of secret vengeance will free up my remaining time for other pleasures. What shall they be?

Well, for openers, no more healthy eating. Bring on the grease. And if it doesn't have a lot of fat, it had better be made out of chocolate. Carbs? Hey, carbohydrates are in bread, and that's the Staff of Life, right?

Not that I care. If it tastes good, in it goes. If it makes your arteries clang shut, so be it. And if it brings on a heart attack, so what? Recently I found among my notes an unattributed quote from a former colleague, back in the days when I was a medical writer, working for a prestigious medical journal. I think this was from a man named Dave Cleary, who covered medicine and science for (I think) the Philadelphia Inquirer, and if I am wrong I apologize, but whoever it was said this, on an Internet site read by science writers:

"I don't know how many of you cover lots of medical meetings, but I've made an interesting observation over the years. The worst food, from a health standpoint, is at the cancer meetings. At the heart meetings or the women's health meetings or whatever, they serve bagels for breakfast and poached fish and yogurt dressing and stir-fried broccoli and sherbet for lunch. At the cancer meetings, it's danish for breakfast and cheese cake and roast beef and blue cheese dressing for lunch. At a recent cancer meeting, I asked an oncology administrator if he knew what this was. "Sure," he said, "the cancer docs know the truth." What truth? I asked. "They know that you want to die of a heart attack," he said.

Amen, Brother. Pass the butter. And the salt. And some more bacon with those fried eggs and hash brown potatoes. And no, it's not too early for ice cream. Life is short: eat dessert first.

All cancer doctors, by the way, don't get it. Here's a snippet from the news, an interview in the medical press with an oncologist who published a study in the journal Cancer showing that cancer patients often have other, undiagnosed ailments. "I think it's important to raise awareness of this issue so that we, as oncologists, discuss with our patients the need for follow-up with a primary care physician after their cancer treatment is completed," said Dr. Craig C. Earle. "We don't want to cure their cancer and then have them die from other things."

The hell we don't, Dr. Earle. Mind your own damn business.


In fact, there's one bonus to being told you don't have long to live. Self-denial in the name of health becomes contemptibly silly. I remember some miserable days during my stay in Korea, as a private in the Army. (Not every day was miserable, but some were downright wretched.) One of my buddies, even unhappier than most of us, started planning some elaborate mischief. Somebody warned him that he'd get in trouble. "Shit!" he said. "What are they gonna do, send me to Korea?" The same principle applies here, with more force. What are they gonna do, give me cancer?

Not that I plan to run off the rails altogether. Long ago I gave up such dangerous blood sports as bullfighting and adultery. I even quit drinking, and doubt I'll relapse. I don't like the person I was when I was drinking.

And I doubt I'll go back to smoking cigarettes. Not only did they give me cancer, I had stopped liking them by the time I quit some 30 years ago, and I don't miss them.

But cigars... ah, yes. When the doctors start talking about "comfort care" and discussing hospice options, I will buy a box of the most expensive cigars I can find the money for. If one of my sneaky friends can get hold of The Real Thing from Cuba, then that's what I'll get. I know I'll have to go outside and downwind—and maybe out of town—to smoke them, and my wife will probably burn any clothes she smells cigar smoke on, but these are prices I will pay without complaint.

I have no hope of explaining the attraction of cigars to people who don't like them. Part of the story is taste, and taste is notoriously individual. Some people like the way they taste, some don't. I do. Case closed.

There is also the snob appeal of consuming anything hand-made, and all good cigars are individually made by craftsmen who take pride in their work. Hey, if the damn Yuppies can get all excited over their "artisanal" cheeses and their free-range pedigreed chickens, then I can take pleasure in smoking a hand-rolled beauty from Jamaica. So there.


All the Authorities agree that the essence of adulthood is the ability to defer gratification. Well, fine. But there is a time and a place for everything, and the end of life is not the time for putting off pleasure. No. Print my T-shirt right now: "It's never too late to have a happy childhood." That means never saying "maybe someday." That means ice cream NOW, dammit, not in some indefinite "later."

In this formulation, ice cream is a stand-in for all the pleasures I have postponed. Let's assume my conscience remains intact. I will still refrain from murdering all the people who deserve it. (Not only do I disapprove of murder, but it's so frustrating. There are just too many of the bastards for me to make a dent in their ranks, and the last thing I need in my waning days is a futile and exhausting task.)

But not all pleasures have such drawbacks. In fact, most of them have no downside at all, save expense; and as we have all been told since childhood, you can't take it with you. A coin for Charon, sure, but even that is collected before you finish the journey. Wherever we end up, we'll hit town broke.

Most of the items on my last-spree shopping list involve travel. I've always had an itchy foot. There are so many places to go back to, so many to see for the first time, and (no matter how long I may contrive to live) so little time.

So many ways to get there, too, and therein lies a problem. Two of my favorite vehicles are small boats and small airplanes, and I have some new and unwelcome restrictions on using them.

Having a permanent tracheostomy means you'd better not fall overboard. It's a wide-open hole in the front of your neck, a window to the windpipe. Go under water and the water pours right into your lungs. "Holding your breath" doesn't stop it. So if you get an unexpected dunking, the best you can hope for is some spectacular coughing, and if you can't get clear of the water, it won't be long before it doesn't matter any more.

Awkwardly, nobody makes a life jacket that does much good, except to make your body easier to retrieve. None of them get your neck high enough out of the water. Rats.

Now, I have not fallen out of a boat since I was 12 years old, and there is no reason to assume I would now, but All The Authorities seem to agree that tracheostomy patients should avoid small watercraft. (All but a few; some of the folks I correspond with on the laryngectomy chat list still float around in everything from bass boats to those rubber donuts you sit in. Some even swim in a small way, with or without a special snorkel that fits into the stoma.)

I may very well get into some boats before this is over, but I have more or less given up on making another canoe trip, and I guess the Colorado River raft trip is out of the question. I really feel bad about both of these. The canoe country of the North Woods is one of my homes, and I have never seen the great canyons of the West from water level. Now it seems I won't.

I'm still working on the small-airplane problem. The story is too long and technical to insert here, but somewhere during this cancer adventure I lost my FAA pilot's medical certificate. Until and unless I get it back, I can't fly most of the planes I am otherwise licensed to pilot. I can still fly gliders, and I do; and I am allowed to fly ultralight aircraft, which don't attract me all that much. They look like flying lawn chairs to me.

And neither gliders nor ultralights are any good at what I really like to do: fly long cross-country trips, chasing the horizon all day. Until last year, when my medical certificate was yanked, I was part-owner in a wonderful airplane, a Piper Cherokee. We flew that sweet machine all over the middle of the country, from our home in Texas to Kansas City, Chicago, the Big Bend country of West Texas, and lots of big and little spots on the map that just seemed like good places to go. My wife learned enough navigation to enjoy sitting with map in lap and telling me where to turn. I also did some volunteer flying for Angel Flight, the nice folks who carry people from little towns to the big medical centers. (A nice bit of symmetry there; most of the patients I hauled had cancer. I may need a ride from Angel Flight myself before this is over.)

When the next surgery is finished, I will start the gears grinding once more to get my medical certificate back. If nothing else, having a Federal agency to argue with should keep my heart rate at aerobic levels, and that is widely believed to be good for you. If I get the ticket back, I'll probably try to find another airplane to buy into.

Of course I can't afford it, but airplane ownership allows a person to delude himself in a wonderfully plausible way. An airplane, very much unlike a car, increases in value over time (unless someone intersects the ground at too severe an angle with it, of course). So theoretically I could buy a plane and count on selling it for more than I paid. Even allowing for inflation, I'd just be parking my money, not spending it.

This is, of course, a lie, because it doesn't account for the cost of flying and maintaining an airplane. But nothing is free, and few dreams are as inexpensive as this. And few things are as expensive as deferring all your dreams.


But I will probably have to delegate a lot of my air travel to airline captains. Ah well, they fly pretty decently and no doubt they need the work. And truthfully, they have access to aircraft that can take me places I can't reach with a single piston engine. Europe, for instance. I have friends and unfinished business there.

Part of this obsession with travel may stem from the fact that I don't expect to go anywhere after I'm dead. I once saw a cute bit of graffiti on a university washroom wall: "Anything is possible, even God." But I don't think so. Theoretically, I suppose it could be, but I'll bet all my money the other way.

Now, I know you can't take it with you, and that goes for experience as well as possessions. So why do I—why do almost all of us—want so poignantly to see and do so many things before we die?

Tennyson's Ulysses wasn't sure what was waiting, either, but he felt the same way. I hope you will go read all of that truly noble poem, but here is the end of it, which fits my subject:

The long day wanes: the slow moon climbs: the deep
Moans round with many voices. Come, my friends,
'Tis not too late to seek a newer world.
Push off, and sitting well in order smite
The sounding furrows; for my purpose holds
To sail beyond the sunset, and the baths
Of all the western stars, until I die.
It may be that the gulfs will wash us down:
It may be we shall touch the Happy Isles,
And see the great Achilles, whom we knew.
Tho' much is taken, much abides; and tho'
We are not now that strength which in old days
Moved earth and heaven; that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.

I don't know where I'm going, but I'm not going empty-handed. I think of those Amazon Indians who float their dead down the river in a canoe with all their trophies. Well, I plan to fill my little boat. Load 'er to the gunnels. She may sink but she won't rock.


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