The Cost of Hope

by Amanda Bennett

  “These specialists see things theoretically,” says the hospital doctor. “Sometimes they can’t see the patient in context, what he looks like when he’s in the hospital.”

  Says Dr. Flaherty: The folks in the hospital—interns, residents, and fellows—don’t see that many cancer patients OUTSIDE of the hospital. And they don’t see that many with metastatic kidney cancer—maybe 0.1 percent of their cases. They don’t understand that the course of kidney cancer in the lungs is different from that of actual lung cancer.

  So Dr. Flaherty is not fazed by the growth. In any case, he and I want to move on to the next link in the daisy chain of newly available drugs. Sutent, another targeted therapy, has been approved for a year. It works as Avastin does, by stopping cancer’s ability to build extra blood vessels to feed its growth, but in a different way. One two-hundred-dollar pill a day. A shot at more life. Sutent might have more serious side effects—rashes, fatigue, stomach distress, strokes—but Terence is game. He begins taking it on November 15.

  Dr. Flaherty is optimistic about Terence’s chances. He’s seen Sutent do remarkable things with even sicker patients. He expects it will do the same for Terence.

  “Tell Terence that happier days are just ahead,” says Dr. Flaherty.

  24

  Terence believes Dr. Flaherty, I am sure.

  In retrospect, I realize that he is starting to believe something else as well. Just home from the hospital, he draws a line down the middle of a sheet of paper. On one side, he orders me to list things to throw away. On the other, things to keep. I won’t hear it.

  “Stop it!” I snap. “You’re not going to die.”

  “Just do it,” he says.

  We begin holding two contradictory thoughts in our minds at once. The latest copy of our will has been languishing in a pile of paperwork for more than a year. On November 15, we head downtown to sign it. I drop him at the door then head to park the car. When I return he is so tired, he can barely make it up to the lawyer’s lobby. Still proud, he won’t use the walker outside of the house. He leans on his cane.

  The attorney in charge is my friend Abbe. Three years later, over dinner, I ask her: When you saw him that day, did you know what I wouldn’t admit? Did you see that he was going to die?

  She doesn’t hesitate for a second.

  “Absolutely!” she says.

  And then she stops. She is remembering something.

  Abbe is a taut, professional, politically connected Philadelphia lawyer. Yet I remember seeing her dissolve in tears several years earlier at a social gathering of women as she talked about her mother’s then-recent death. Now she is remembering her mother.

  “We knew my mother was dying,” she says, slowly. “Yet somehow I talked myself into thinking it would be okay to go on the vacation we had planned.” No sooner did her family arrive in Hawaii than she got the call. She barely made it back in time, and only one of her two children made the flight.

  “How did I think it was okay to leave?” she now asks herself. “What was I thinking?”

  As we talk, we realize together that she was thinking what I was thinking: I see this. I understand this. I can’t believe this.

  She knew her mother was dying. She simply couldn’t believe it. “I was just unable to imagine the earth without her in it.”

  I know the feeling.

  Thanksgiving comes. Cousins Margo and Glenn arrive with Miles and Jane, their children, who are just a few years older than Terry and Georgia. Later, after Terence’s death, I ask Margo: Did you make the eleven-hour drive from Cincinnati to Philadelphia because you suspected he was dying? No, she says. We knew he was very sick. We didn’t know he was dying.

  We turn the Thanksgiving kitchen into a war zone of pies. Pumpkin pies. Apple pies. Cherry pies. Margo, Jane, Georgia, and I roll and knead and chop and slice. Lemon meringue. Key lime. Pecan. Hardly traditional Thanksgiving fare. No matter. Whatever anyone wants, we bake. In the living room, Glenn sits at the grand piano. “Ain’t Misbehavin’.” “On the Sunny Side of the Street.” “Take the A Train.” Terry lugs a snare drum up from the basement. The only clue that something is different this year is that it is Cousin Miles, not Terence, on the bass fiddle. Terence sits and watches.

  Later that evening, we play charades as usual. Terence plays only one round, from his chair, then settles back to watch.

  Margo takes one last picture of Terence, sitting on our sofa in the family room. It is easy to see how we can all fool ourselves into feeling … if not normal, then almost. Terence looks tired, sitting there in his familiar red plaid shirt. His glasses are off. His face is a bit flushed, and a tad thinner than usual. But mostly he just looks like Terence.

  As Margo, Jane, Georgia, and I clean up, and Terry and Miles mess around with their music in the living room, Terence talks intently with Glenn. After I help him up the stairs to bed, he recounts the conversation.

  “Glenn and I agreed on one thing. We have had terrific lives. Whenever we go it will be okay,” he says. Yet he adds: “And whenever we go we’ll feel ripped off that we didn’t get more.”

  That feels right to me.

  He continues. “We also agreed that we are incredibly lucky in our wives. Neither of us can believe how lucky we are. Margo is such a dear,” Terence says. And, he adds, Glenn returned the compliment: “ ‘Who wouldn’t want to be married to Amanda?’ ” Terence reports that Glenn says.

  Terence tells me this with pride.

  It is only much later that I realize what a gift Glenn has given Terence, and Terence, in turn, has given me.

  Sitting on that same sofa a few days later, after Margo and Glenn have gone home, I suddenly panic. We’ve been tempting fate. All along we’ve been focusing on Terence. What if he winds up fine and I do not? What if I suddenly die and he lives on? Who will care for him and the children? I realize we haven’t planned for that chance at all.

  “If I’m hit by a truck, I want you to marry Alix,” I say. “She will take care of you and the kids.”

  My sister has a huge heart. She is divorced. She has two daughters Georgia and Terry’s age. She is smart and witty.

  “You want me to MARRY Auntie Alix?” he asks. He does his annoying dropped-jaw you’re-a-moron astonishment face.

  I stop to consider. I think about the things Terence and I fight about, still. The piles of projects. The cabinets stuffed till they cannot close. I think about our basement. Boxes of twenty-five-year-old videos splitting open and spilling over the basement floor. Darkroom equipment. Punching bags. The stacks and masses of mingled things that I am only able to inventory slowly in the years after his death: Six jars of mustard. Fourteen Phillips head screwdrivers. A band saw, twenty-one extension cords. Cases of emergency food dating back to 1993. Books on building bird-houses. Boxes labeled “Medieval music.” “Passion plays.”

  I pause and think. Auntie Alix, my generous, funny, red-headed sister, is an obsessive tidier. Closets organized with related items in little baskets. Towels stacked by color, all folds facing the same direction. Her two-car garage actually has room for two cars. Tools aren’t in mountains; each is precisely hung. There is no clutter in her house. I stop giving her gifts. It’s more efficient to send them straight to Goodwill, I tell her, after spotting a present in the giveaway pile barely a month later. The family jokes that it isn’t safe to put our purses down when we visit her house, lest she toss them out while we are eating.

  “Okay,” I say. “Bad idea.”

  In the meantime, Terence’s face has gone white. “Don’t ever talk about that again,” he says.

  “About what?”

  “You are the center of my life,” he says. “If anything happened to you, the light would go out in my world. Don’t ever talk to me about it again.”

  So he knew, I think later, what it would be like once he was gone and I was alone. He knew what it would feel like. We never speak about the end—of either of us—again.

  • • •

  I cont
inue my preparations for what I expect will be this new, tougher phase of our life. I find the protein drinks online. I order a case. There is a bodybuilding shop near my office. I buy protein bars in all flavors, dozens of them. From the Philadelphia Parking Authority, I get forms for a handicapped license plate and download the application to get a parking spot right in front of our house.

  Each day it is harder and harder to get him up and down the stairs. He has lost weight, but he is still a big man. I begin to research installing a stair lift. Yes, there will be room for one, even in the curving staircase of our Philadelphia rowhouse. Meantime, he lives upstairs. I bring food up to him.

  He is no longer able to get in and out of bed alone so I hire a health aide. The woman the agency sends is as close to perfect as I could ask—a quiet, cheerful, religious older island woman with a soft and delicate accent.

  I try to make Terence eat. He hates the taste of the protein shakes. I add vanilla. I add ice cream. He hates the protein bars too. I slice them into tiny pieces and try to get him to eat a sliver at a time. Whatever he craves, I buy. Cold grapefruit slices. Chicken noodle soup. Clam chowder. Eat, Terence. Eat. Just try. You’ve got to stay healthy so you can get better. I count the calories he consumes in one day: 210.

  Every day he swallows a Sutent pill. Every day I look for signs that it is starting to work. Every day he seems a little weaker, a little more confused.

  “Roll to the left,” I say one morning.

  He rolls to the right.

  “No, sweetie. The LEFT,” I say, trying to hold back my irritation. I’m in a hurry for something. For what? I no longer have any idea.

  He looks puzzled. I nudge him in the right direction. Something seems odd.

  Terry notices it too.

  “Mom? Is Dad okay in the head?” he asks me one afternoon.

  “I’m not sure,” I say.

  With his question, I think about what I’ve been pushing to the back of my brain, that what I have considered Terence’s exhaustion may have suddenly changed into something else. This is the first time I’ve thought of it directly. I am still ignorant of what it means. And odd as it seems, I stay ignorant. So why can’t my mind go there?

  Why can’t I say the word “die”? Why can’t I even think it?

  Several years later, I consider my thoughts about my father, who died two years before Terence.

  I think about how for years, without being really aware of it, I carried an imaginary picture of what my father’s last days would be like. In my mind we sit on a rise in the sunny backyard of the Victorian house where he and my mother have lived for forty-seven years. Deep purple clematis twine around the trellis nearby. The sun is warm, but the air is chilly. His legs are covered with a plaid cashmere blanket. In my imagination, he is in a rattan wheelchair, very FDR. In this picture, Daddy doesn’t talk much. He has never talked much. But from time to time he tells me something about what it was like in the Azores, where he was stationed during the war.

  What really happened was nothing like that. Instead, on April 20, 2005, my mother left the house to run an errand. Daddy went upstairs to nap. When Mum returned, one look at the bare foot poking out from under the covers and she realized he was gone.

  After Terence dies I come to understand that I have also carried a fantasy about how he and I would end our days together. My mental picture is of a hospital bed—we have spent so much time in hospitals the image is burned in my brain. My imaginary dying Terence lies slightly raised. Beside the bed, a tape recorder plays Dixieland, the volume turned down low. We have a tape for each of the children’s arrival into our lives—Vivaldi for Terry, Holst’s The Planets for Georgia—so my imagination supplies a tape for Terence’s leaving. Sitting beside the imaginary hospital bed, I read him poetry—Ginsberg, his favorite. Cavafy, mine. Finally we settle on Wordsworth, which we both like. We talk softly about the things we remember.

  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.

  25

  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.