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.
26
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.
From Vermont, Charly Dickerson says good-bye. A week from now he will say at the funeral how he and Terence became friends—in prison, where they both worked, believing they could transform even the worst. Good-bye from Charly. Good-bye from Mardean. Good-bye from the whole crowd up there who still bel
ieve that bad can become good and justice and redemption are right around the corner. Good-bye from Vermont. Good-bye from Sean Delgrosso, the Beijing friend who stood up for Terence at our wedding, crisp in his Marine dress blues. Good-bye from Sean, I whisper. I fill the tiny room with the ghostly layers of his life. Dan Metraux. Joel Gross. Linda Kamal. Good-bye, Terence. They all say good-bye.
The good-byes he would have said had he been able I now say for him, to all his friends, his family, his children. Every day for three days I speak to him of the kids and for the kids. And of me. And us. I tell him private things, things I want him to hear. Things I know he knows. I sleep in a chair by his side.
At about 2:30 a.m. Friday, a noise in the hall startles me. I awake just in time to hold his hand as he dies.
A doctor enters. It is 2:44 a.m. Terence is now pronounced officially dead. She departs and everything becomes still. His friends’ images leave the room. One by one the voices I conjured recede. The doctors are gone. The nurses are gone. Now Terence too is gone. I sit quietly for a moment. Can I feel him anywhere? Is there anything left of him in this room? There is nothing. The room is silent. There is only me left. I gather up my things and take an elevator downstairs.
I walk through the deserted lobby, hail a cab in the dark, and head home alone.
Afterward
Ten days later, the kids hang Daddy’s Christmas stocking alongside our three. I mail the cards he had addressed months earlier, slipping in a black-bordered note. I throw away the protein bars, give the energy drinks to a shelter, and wash an opened bottle of Sutent down the drain.
For years, Terence used to tell a story, almost certainly apocryphal, about his uncle Bob. Climbing aboard a landing craft before the invasion of Normandy, so the story went, Bob’s sergeant told the men that by the end of the day, nine out of ten would be dead. Said Bob, on hearing that news: “Each one of us looked around and felt so sorry for those other nine poor sonsabitches.”
Did Terence know that we would be in that same boat?
For months after Terence dies, the kids and I struggle with the sense of unreality. I keep his cellphone in my purse until I frighten the children by accidentally pocket-calling them from his number. We all do double-takes at the sight of a familiar hat or jacket, the sight of his grin in a crowd.
“Sometimes I feel that Dad is just really hard to reach right now,” Terry says.
I frighten myself by developing an inexplicable compulsion: All day, every day, I frantically refresh my email. The habit is getting in the way of my work—until a therapist helps me realize what I am doing: I am looking for the email that never comes. I am looking for the message from Terence saying he is coming back home. In a strange echo of my inability to believe he was dying, I can’t quite believe he is dead.
We bury Terence at St. Peter’s Church, in a sunny spot right outside the church door. Once a week I walk the six blocks from our house, sit on the stone, and tell him the news. Georgia made the honor roll. Terry’s band has a new CD. That shortcut to the highway? You were right. It’s faster. Georgia went to Brazil. Terry changed schools. The kids took me out for Mother’s Day. That lunatic neighbor? He moved.
Slowly, slowly we all emerge from the black hole. Our friends and family step in to ease the void. Georgia draws and writes and confides in her friends. Terry becomes the musician that his dad dreamed of. More Christmases go by. Terence’s old friends stay my friends; our cousins become our extended family.
And eventually, I fall in love again.
In love with a man as kind and loving, as smart and funny, and as generous and quirky as any who has ever walked this earth.
Not a day goes by that I don’t wish back the days and years that Terence lost with me and his family. Nor, paradoxically, does a day go by when I am not amazed and grateful for this new love, and this new life. A partner for me. A friend for my children, just as I am a friend to his. I think about that long-ago day in Kentucky when, facing what he thought was his imminent death, Terence’s first thought was of how best to protect and comfort me. Another gift, I think. The gift of being able to love again.
As I look back, I wonder: Is there anything I would have done differently? I am sad that Terence and I worked so hard to save him that we never gave ourselves time to say good-bye. But when should we have conceded he was dying? From the very first, when we learned he had a rare and aggressive disease? When the metastases gave him, statistically, only months to live? When the cancer began its renewed march? At which one of these moments—each of which presented itself to us as possibly the end—would it have been better for us to concede defeat?
No, sad as I am at our silent farewell, I would not trade away any of those years of fighting for life.
I set out to find out the cost of Terence’s care and of the drugs that may or may not have prolonged his life. I secretly hoped to find out something else. Did I do the right thing?
I’m not sure I found the answer to that question, or that I ever will.
What I found instead was the cost of our hope. Was that hope good for us? Without question. For us the fight for life, with all its frustration, confusion, and failure, changed what should have been the seven most dismal years of our lives into the seven most wonderful.
Yet our quest cost so much more than I believe it should have, and that expense put that hope far beyond the reach of too many others.
Perhaps, I think, I have found at least part of the answer in a place I at first didn’t realize I was looking. Perhaps the answer—or a piece of it—lies in the most mundane details of our journey. What if Terence and I were able to see more clearly some of the costs of the procedure? Would we have been able to make wiser choices? Less expensive choices? Even choices that might have made better sense for us?
I believe we would have forgone the painful and ineffective IL-2 treatment because we would have had to think harder about it. As long as it was free—which it was, to us—Terence almost had to seize on even the tiniest possibility that it could help.
And what if there were a system in which we could see the prices for the scans—would Terence have had seventy-six of them? Was each and every one of them equally necessary to his care? Were some of them even harmful? Could we perhaps have even been better off for having had slightly less treatment, for having spent slightly less money?
And yet without bigger changes in the way health care is paid for and delivered, how would even that lead to a fairer way of sharing the access to medical care—so that I with my good health insurance don’t take everything, leaving you with nothing? Right now, if we choose to skip some expensive treatment that has only a minuscule chance of success, what effect will that have on you? None. It may save some money for my employer—a reasonable goal, of course—but it won’t help you get some kind of treatment that you might need.
What can we do about a system in which neither the people who pay—our employers—nor the people who use the services—Terence and I and everyone like us—can really see or influence the cost?
A system in which prices are set as in a giant Chinese bazaar? A system in which $600,000 in bills becomes $200,000 in payments, and as much as possible of the cost of care for people who can’t or won’t pay their bills is tucked into the negotiating space between those numbers?
And what can we do about a system that is so maddeningly complex to navigate? One that took days, weeks, months, even whole years of our lives to figure out? One that leaves me, even today, four years after Terence’s death, not entirely sure we did the right thing? Why was this system designed for the doctors, hospitals, laboratories, and technicians and not for Terence and me? What if the doctors in the hospital and the oncologist who treated Terence had been on the same team? What if they had been talking to one another rather than having their debate about Terence’s prospects only through me?
Would we all have been better off?
Would we all have made better and more rational choices? I think so.
And what about the choices themselves?
I discovered that death does not always arrive in an easily recognizable form. To call it “denial”—this inability of ours to see, and acknowledge, death stalking our loved ones—is to almost laughably understate its force. Clearly knowing in advance the wishes of our loved ones is key. Yet it is almost certainly not enough. Terence and I had both signed legal documents clearly stating our preferences. We knew that neither of us would want to push on past the inevitable. Yet neither of us could clearly see the inevitable until it was absolutely unavoidable.
Since more than a quarter of all medical care is provided in the last two years of life, surely we must come up with a better way of helping ease families to gentler—and less costly—transitions.
But where would this help come from? I also learned that there are no true bystanders. The system masks all kinds of agendas—personal, professional, financial. Everyone in the process—doctors, nurses, hospitals, pathologists, me, Terence—has some stake in the outcome. Hospitals are paid only for what they do, not for what they don’t do. The doctors want to cure, to succeed, to practice their craft, to make a good living, to save a patient. Many are consultants to the drug companies, which in turn want their drugs to succeed.
Surely we all could be helped by someone standing outside this process who could ease us through our decision-making, who could help us understand and be more dispassionate about what we are facing.
For all the system’s flaws, there is so much about it that is amazing—that as many people as possible should be able to enjoy. Two years after Terence’s death, I wade through a snowstorm to Keith Flaherty’s office in Boston, where he has moved to a new job that lets him intensify his work on the kind of targeted therapy he used with Terence.
The Cost of Hope Page 20
