The Cost of Hope (25 page)

In this fantasy, as with the one about my dad, one thing is very clear: Everyone in the picture recognizes that the end is near. Something has announced to us that death is approaching and, in my fantasy, we are living out a movie-set version of what should happen.

So when the end actually comes, I can’t recognize it as the end of his life. As potent as the signs seem now in retrospect, it just doesn’t announce itself as the end of his life. Somehow I manage to see it as just one more crisis to get past. I don’t see death because it doesn’t look like what I imagine death to look like.

Yet months after it actually happens, I realize that it all unfolded just exactly as I had imagined it.

Except for the part that doesn’t.

On Friday, December 7, 2007, just as the aide is packing to leave, Terence looks up, startled. The corners of his mouth foam bright red with blood.

“Get him to the emergency room,” Dr. Flaherty’s nurse, Gloria, says when I call.

I fumble through the telephone book. I know—from our previous experience—that if I call 911, the rescue team will take me only to the closest hospital. I want to get Terence across town to our own hospital, the one at the University of Pennsylvania. The one where Dr. Flaherty works. I pick an emergency service at random from the phone book. The ambulance that arrives is battered and old, the emergency workers scruffy, barely shaven. They struggle with the seated stretcher. I can hear them swallow curses at our narrow stairs. I climb into the ambulance beside Terence. The floor is rusted. There is grime in the corners.

In the emergency room it is clear something is seriously wrong.

“What’s your name?” asks the ER doctor. Terence responds correctly.

“What’s the date?”

Terence gives the doctor his habitual “Just how dumb are you?” look. But he can’t answer.

“Who’s the president of the United States?” That triggers something.

“That moron Bush,” he says.

I see the numbers on the oxygen monitor above his head drop. Ninety-nine. Ninety-five. Eighty-six. Seventy-eight. The oxygen begins to flow through a tube, and his numbers rise again. That’s better. This can be fixed. We have to keep him well. We’ve got to keep him well long enough for the Sutent to kick in, I tell the emergency room doctor.

I can read the inner dialogue on the physician’s face.

One of
those
.

He has never heard of Sutent. I might as well say “unobtanium.” I can hear the doctor’s thoughts: I have a very sick man here, one who doesn’t know the date and whose oxygen levels are dropping precipitously, he is thinking.

And
she’s
waiting for a magic pill.

Hours pass. Terence grows querulous.

“I want a Coke,” he says. “I want a Coke.”

Is surgery ahead? Is a crisis looming? The doctor won’t risk filling Terence with liquid. We dip a sponge in Coke and wet his lips with it. Terence gets angrier.

“I want a Coke,” he demands. “I want a Coke.”

At 10:04 p.m. Terence is admitted to the intensive care ward, where Dr. Eric Goren is doing his last intensive care overnight shift of a three-year residency.

It is here in a break room on the intensive care floor of the University of Pennsylvania hospital in the hours between midnight and dawn that this twenty-nine-year-old not-quite-doctor and I stand beside vending machines selling soft drinks and chips and square off for the battle that is at the core of end-of-life decisions all over the world: Is this, in fact, the end of Terence’s life? Neither Dr. Goren nor I yet know the real outcome: that this will be a relatively short skirmish. Later, looking back, I will realize once again that the way I feel at this moment is one of the keys to the end-of-life debate: I still honestly don’t believe that it’s the final
battle. Despite the overwhelming evidence, I believe only that we are facing long odds. Not hopeless odds.

The picture in my head is not of an increasingly gruesome fight over the empty shell of a person. My picture ends with Terence rising from his hospital bed, fragile and frayed perhaps, but back to his old self. In my mind, this is still a temporary crisis that ends with his getting back to something like normal. I am not pushing Sutent on him thinking of how many days it will buy him.

I am thinking weeks. Months. Years.

Even here. Even now.
I still do not see this as an end-of-life battle because I still do not see it as the end of Terence’s life
.

On one side of that small break room, Dr. Goren sees a man who is dying. Perhaps tonight. In the other corner, I still see hope ahead.

We negotiate.

Dr. Goren is gentle but blunt. The tiny bubbles of blood are a warning: A “sentinel bleed” he calls it. At any moment this bleeding can, without warning, become uncontrollable. Without my permission to desist, if this happens he will be forced to trigger a full-scale rescue effort.

“It is horrific,” he says. “It is ugly and painful. It is not something we want families to see. It is not something you want to see. It is not something even we want to see.”

Do you want us to do it? he asks.

Our Sutent experiment is only twenty-two days old, I say. It took Avastin four months to work. Perhaps the new drug still needs more time to kick in. I want to talk to Dr. Flaherty. I can’t find him. It is a weekend. He’s not around. Dr. Goren and I leave messages. At Dr. Flaherty’s office. At his answering service. With the oncologist on call at his office. He’s not answering. Where is he? I want to give Sutent a chance. Until I talk to Dr. Flaherty, I don’t want to give up.

We settle on what the hospital calls Code-A: Do everything possible to prevent a major bleed or anything life threatening. Don’t take heroic measures if death seems inevitable.

Two years later, I track Dr. Goren down. He is still at the University of Pennsylvania, now as an assistant professor of clinical medicine. As I look back on that evening, I now see myself as stubborn and unreasonable, I tell him. Today, I see my refusal to see death in Terence’s face as a kind of temporary insanity. Was I insane? Was I outrageous?

Not at all, he answers. You were typical. Absolutely typical, he says. Maybe even a little more reasonable than many. He is now a full-fledged doctor, with two more years of experience. Just in the previous month, he tells me, he presided over the seventh intensive care admission of an elderly woman with Alzheimer’s. Over and over she dies, and the family keeps bringing her back to life. The family cannot bear to let her go. The family will not let her go. When death wins it will be only once it breaks through the human shield they form before their mother, their sister, their wife, their grandmother.

Back in the intensive care ward sometime after midnight I call the children in. Georgia is spending the night at a friend’s house. My sister picks her up. Terry is at a party. His friends Suzie, Ben, and Will drive him over. Things have changed, I tell Georgia and Terry. We are doing everything we can to save him. But things have changed.

Dad may die tonight.

I say the words because I have to. But they are still just words to me.

• • •

For the next two days, Terence alternates between darkness and light. He is polite but vague when he sees the children.

“Is there something you’d like to say to them?” I ask at one point.

He looks puzzled.

“… No …?”

“Mom, stop leading the witness,” Terry chides.

Terence still wants a Coke.

The night nurse is firm. “Mr. Foley, we can’t let you drink anything right now. Maybe later …”

Terence smiles sweetly and nods. The charming Professor Foley has entered the room. I can see the bow tie bloom atop his hospital gown. He thanks her. She exits. Instantly, his face contorts in fury. He whips around toward me.

“GO GET IT!” he hisses. “NOW.” The Terence I know is still in there. Somewhere.

As morning comes I sleep a bit in a chair, covering myself with my navy raincoat. I awake and Terence is saying strange things.

“That was a swell banquet!” he exclaims at one point. “The cats are here,” he says at another moment.

Yet when his friend Dick Epstein arrives, Terence brightens. Dick Epstein, his cable-car-driving, political-fight antagonist, Russia-traveling buddy. Something deep in Terence’s mind stirs.

“Clarence …,” says Dick. The forty-year-old nickname.

“Dickele!” Terence shouts, using his old Yiddish endearment. Little Dickie!

It’s the last thing I hear him say.

When morning comes on Monday, the scans are showing signs of cancer in Terence’s brain, along with a cascade of hundreds of tiny strokes. I have Terence’s signed living will, but I don’t need it.

I know what this man who lives for books, music, and ideas would want.

Dr. Flaherty arrives at last. He looks pale.

“I didn’t expect this,” he says. “I’m sorry.”

Together we agree that whatever promise Sutent once held, it holds it no longer. I accept that this is the end, I tell him. He nods. He leaves.

The discussion now shifts to hospice. Hospice is intended for those whose lives will likely last six months or less. Intellectually I grasp that fact. Emotionally, I still do not. Even now, I am planning on a future for us together. A sad future, but a future nonetheless.

The hospital has a hospice program that is administered in the same room where Terence is now lying. The services will change, but he will not need to be moved. Yet the hospital is all the way across the city from our home.

“Are there options for us closer to home?” I ask. “And what about after the six months end?” I am being practical, considering the weeks and months of daily visits that I expect the children and I will be making.

The hospice staff must be used to these discussions. They give
me names of places nearer to our neighborhood, and of long-term-care facilities. I am still mentally pushing “the end” out into a distant future. I do not want to see that the end is upon us. Even now, my mind and my gut are at war.

My mind wins. Terence is comfortable in his hospital bed. I leave him there. We can move him later, I reason. On Tuesday, December 11, 2007, at 1:18 p.m., I sign the papers that turn the bed in which he lies from hospital to hospice. The hospital staff takes away the machines and the monitors. They remove the oxygen tubes. They silence the steady click of the heart monitor. The green wiggly lines above his head go dark. The oncologists and radiologists and lab technicians disappear. Another group of people—hospice nurses, social workers, chaplains, and counselors—appear, to help Terence, me, and the children. The focus shifts from treating Terence to easing his transition. And ours.

A chaplain stops by to pray with us. She and I chat. She confesses that she does not much like her work. It leaves her exhausted and hopeless. I can see your point, I say. Another woman, a registered nurse named Jennifer, comes by twice a day. Jennifer is the death specialist. She explains to me what is going on, what each of the medications is, and what Terence may be experiencing.

For the next three days, Terence lies still in the same hospital bed. Over those three days, we spend $14,022, less than a third of the previous four days’ $43,711. What costs $14,000? Our last car? It is a dowdy two-year-old gold Sable. A year at a state college? Here it buys a bed, the pain and anxiety medications Ativan and Dilaudid, monitoring for him, and counseling, a different kind of pain management for the children and me.

I accept that Terence is dying. Even now, I still can’t fathom it. When he drifts into a coma, I beg the nurse to reduce the medications so he will wake up again.

It isn’t the medicine, she explains. “He has begun the dying process,” she says.

Still, to humor me, she reduces the dose. Terence begins to fidget, to pick at the bedclothes. His face, previously peaceful, contorts in some unseen discomfort. Yet he does not awaken. Okay, I say, put it back. Jennifer’s records show that I “verbalized understanding.”

Verbalized, yes.

Understanding?

Still not quite.

And so here it is at last, just as I now realize I had imagined it all along.

Sun streams through the window. His old black cassette recorder is by the bed. The South Frisco band is playing. The jaunty two-beat music that once filled our house is now filling the hospital room.

And here I am beside the bed, reading to him just as I imagined. What is missing from this scene as I once fantasized it?

Terence.

It’s not Wordsworth I am reading. Not “The Ruined Abbey.” Not “Howl.” No. It is his friends’ good-byes that I am reading. And mine. Together, Terence and I have pushed the bell curve as far as we are able. We have skated so close to the thin ice of probabilities that, in the end, we have crashed through. I am still here to say good-bye to him. He is no longer able to say good-bye to me.

Still, I press on. Surely the Terence I know is big enough, and fierce enough and robust enough—surely there is some of that Terence somewhere inside this sleeping man. I email his friends around the world and read their responses to him. Layers of his life unfold before me as I fill the room with their voices. Cousin
Margo says good-bye, I say. My mind calls up the 1950s snapshot of Margo, her two brothers, and Terence on the cement steps of her parents’ bungalow. She is like a little sister to him. Good-bye, says Margo. Good-bye from all of us, from Cousin Glenn and from Miles and Jane. Uncle Fred, the eldest of Terence’s half brothers, floats in the room speaking for the other three boys, the family lost and found. Good-bye Terence, good-bye from your brothers. Aunt Rita, the half sister so nearly his own age, speaks through me: I wish we had known you better, Terence, she says. Good-bye. Good-bye. The hours roll on. The sun moves past and shadows fill the room. One by one his friends check in. One by one, I use words to welcome in images of the friends of his lifetime.

“It’s Spider,” I say to Terence, Steve Stryder, his high school buddy. Spider is saying good-bye. Good-bye to high school. And trumpet. And long beer-filled evenings. Good-bye Woody Boyd, Pat Blackwell, and the Philippines. Pat sends snapshots of their long-ago sailor selves. Once again in the shadows I spin in this hospital room, Terence and Woody and Patrick goof around. They pick up girls. They fight the last war—and the next—in their heads as they sit on a curb by the sea.