The Cost of Hope

The foreign correspondent’s apartment not far from mine in Peking is warm with music and laughter. It is Saturday, September 3, 1983, and I have been working here as the lone
Wall Street Journal
reporter for more than seven months. Tonight, a story I am trying to write will not be tamed. Frustration has chained me to my typewriter late into the night, and now I am looking for some diversion.

There is so little to do in China at night that any party is a magnet, not just for newspeople, but for the diplomats and businesspeople who are every bit as isolated and lonely as we are. At any party you are as likely to find wildcatters as bankers, and diplomats from Bali, Paris, and Manila mixing with journalists from Bombay and Madrid. The Africans mainly socialize among themselves, as do most of the Japanese. But every other nationality and profession mixes indiscriminately on any occasion.

I step in from the darkness.

Everyone is dressed to relax, in jeans, shirts, and ratty sweaters. I am wearing my usual work outfit of sweatpants and a shirt two sizes too big. Over on the sofa, though, the guy with a drink in one hand and a cigarette in the other is wearing a gray three-piece suit. And a bow tie. A bow tie! The person sitting next to him gets up to leave. Before I can look away, Mr. Bow Tie beckons me to the empty seat.

By way of conversation with a stranger, I explain what I am doing there, and about the story that is stumping me, the one that
has kept me at my desk so late on a Saturday night. Terence Foley turns out to be an expert on the very subject I am working on. Not just an expert, but a witty one. Erudite. Almost dazzlingly articulate. Who is this man? And what marvelous stroke of luck has landed me next to him at the moment I need him?

We talk so intently that we barely notice the party is winding down and the other guests are drifting off into the near dawn.

Twenty-four years later, in the intensive care ward at the University of Pennsylvania hospital, Dr. Eric Goren tells me Terence, my husband of twenty years, may not live till morning.

It is sometime after midnight on December 8, 2007. Terence Bryan Foley, sixty-seven years old, Mr. Bow Tie, father of our two teenagers, a Chinese historian who earned his Ph.D. in his sixties, a man who plays more than fifteen musical instruments and speaks six languages, a San Francisco cable car conductor and sports photographer, an expert on dairy cattle and swine nutrition, film noir and Dixieland jazz, is confused. He knows his name but not the year. He wants a Coke.

Should Terence begin to hemorrhage, the doctor asks, what should he do?

It’s the kind of question medical professionals like Dr. Goren and families like ours face every day. Can we—should we—prolong this beloved person’s life? For a few days? A few weeks? If we are lucky, for longer?

This is Terence’s and my third end-of-life warning. We’ve won seven years. Can we get more?

Dr. Keith Flaherty and I both believe—hope—that a new medicine Terence has just begun to take will buy him more time.

Keep him alive if you can, I say. Let’s see what this new drug can do.

What I couldn’t know then was that the thinking behind my
request—keep him alive if you can—along with hundreds of decisions we made over seven years, would illustrate the impossible calculus at the core of life, of love of family, and of the U.S. health care debate.

Backed by medical insurance provided by my corporate employers, we were able to fight for Terence’s life with a series of expensive last chances like the one I asked for that night.

How expensive?

When I finally knew, the bills totaled $618,616, almost two-thirds of it for the final twenty-four months. Most of the money was for treatments that no one can say for sure helped extend his life.

This is not the tragic story of a family denied care for lack of resources, or of the struggles of the more than 46 million uninsured Americans. Quite the contrary. Our insurance coverage gave us access to the best medical care all across the country. It isn’t our children’s story either. Terry, now twenty-two, and Georgia, now seventeen, were at the center of everything throughout. It is for them especially that Terence wanted to live on. In this book, though, they play only cameo roles. I have their permission to tell their dad’s story, and mine. I do not have their permission to tell theirs. They were children when most of this story took place and teens when their dad died. They are protective of their thoughts and feelings and their relationship with him; I am protective of their privacy. Perhaps someday they will want to tell their own stories. This, however, is not that story.

Instead, this is about Terence and me. About the choices we made. It is about a marriage and love. About a man and his life. It’s about family and everything we did to try to save the husband and father at the core of it. It is also the story of how I set about to understand, after Terence died, why I did what I did, why the doctors did what they did, and why Terence did what he did—and to try to find out the cost of hope.

It almost always begins in darkness, my memory’s trip back to the China where Terence and I meet.

In the first week of February 1983, I fly in to Peking to take up my post as the correspondent for
The Wall Street Journal
. I am looking out the window of a Pan Am flight as it circles, preparing to land. Below is the country’s capital, one of the world’s biggest cities. This is not the China of the Olympics, the futuristic seventy-story towers and magnetic trains, of stylish wealthy entrepreneurs and world-devouring currency reserves. In 1983, eleven years after President Nixon’s 1972 walk along the Great Wall, the country is still enmeshed in the shock and trauma of the Cultural Revolution and of the turbulent three decades since the People’s Republic of China was formed in 1949. It’s still easy to see the gashing wounds from years of isolation, poverty, and the political instability of the Cultural Revolution that has barely ended.

Peking—it is still Peking in those days—is the home of 9.3 million people, yet there is none of the exuberant burst of light that normally greets travelers flying into a big city. There are no ocher ribbons of highway spiraling out from the city’s center, nor do snakes of white headlights flow in one direction, red taillights in another. No massive office buildings flaunt shining squares into the night long after the workers have left for home. There are no cheerfully lighted houses either, no boxlike warrens of high-rise apartments fanning out to lighted loops of suburban cul-de-sacs.
Instead, here in China’s capital in the early 1980s, most people still live in dark one-story brick or stone courtyard houses with public street latrines. Even in the center of the city, some families still raise chickens and small pigs. Many homes still have no electricity at all.

It is a dark and silent city. In 1983 the country still hasn’t recovered from the decadelong nightmare of the Cultural Revolution that pitted colleague against colleague, neighbor against neighbor, child against parent. The bleakness disturbs me. There are only a handful of cars—some owned by a tiny city-owned taxi fleet, a few driven by diplomats or journalists, as well as the hulking Russian-style Hongqi limousines favored by high-ranking Party officials. Someone sometime told someone that headlights burn gasoline, so only parking lights are used at night. The cars are ghostly shadows with tiny yellow cats’ eyes.

Almost all the necessities of life—food, clothing, shelter—are supplied by the factory or office. Stores have only recently begun to reemerge, but most shop windows are still boarded up or plastered over. For many weeks I don’t even realize that these darkened doorways are stores. It is a dingy, featureless wasteland.

For the first several months I live alone in an apartment that is also my office. While the telex clatters behind me, every night I stand on the twelfth-floor balcony looking down into the dark night toward the southeast of the city. I live herded together with the other journalists and diplomats in this walled compound of cinder-block buildings, guarded—and watched—by soldiers.

The winter air is bitter with the smoke of the soft coal briquettes that people use to heat their houses. Off in the distance I hear the wail of a train whistle. Directly below me, metal clops against asphalt as the horse-drawn delivery carts still allowed into the center city after sundown make their nightly rounds. Even late at night the streets pulse with bikers heading to work or back home or who knows where. Only the barest hint of color—a
sleeve, a scarf, a ribbon—has begun to appear here and there to brighten the Communist-era Mao-style dress. Otherwise the bikers, both men and women, are all dark. Dark jackets. Dark trousers. Dark shoes. Dark hats. Dark bikes.

I stand on my balcony and think how lucky I am to be here at this historic moment—how excited, and at the same time how frightened, alone, and confused I am in this bleak, strange, unwelcoming place.

On Saturday, September 3, 1983, as midnight approaches I am still working. I work pretty much all the time. Just as I am starting to fade with exhaustion, New York wakes up with its barrage of questions and comments and demands. Working all day and then answering the phone through the night adds a kind of surreal, never-quite-awake/never-quite-asleep quality to my life in China.

Tonight I struggle with the story that just won’t fall into shape. Mikhail Kapitsa, a Soviet deputy foreign minister, is set to arrive in the capital. He is the highest-ranking Soviet to visit since China and the Soviet Union broke off relations in 1960. Because the two countries had split, few Soviet experts are left in China, at least ones willing to talk. I can find almost no one who understands the politics of both countries well enough to explain the significance of the visit. There is no Internet; I check the indexes of all the reference books I have brought and find nothing. My interviews have been next to useless.