The Cost of Hope

by Amanda Bennett

  Terence becomes director of a new Asia Center at the University of Kentucky. His shirt pockets bulge with index cards covered with thoughts—musings on cars, politics, history; vocabulary words in Spanish, Russian, Chinese, Japanese, German, French; funny things the children have said; recipes for chili and lasagna. Nearly three years after his death I will be moving something and see an index card covered in his handwriting drop to the ground. The card is covered with ideas for the new center.

  Life is good.

  On Monday, May 6, 2002, I am at my desk at the Herald-Leader preparing for the news meeting to lay out the front page of the next day’s paper. It is a slow day. Fans are camping out waiting for Star Wars II: Attack of the Clones. Storms are rolling in. The phone rings. It is Terry, with panic in his voice.

  “Mom, come home. Dad is sick.”

  I find Terence in bed, his face flaming with fever, shaking with chills under a pile of blankets. He can barely speak.

  “Terence—what’s wrong?” I’m frightened.

  He looks away. “It’s a reaction to some medicine.”

  “Medicine? What medicine?”

  He won’t meet my eyes. “I wasn’t feeling well so I got some medicine …” He is shaking some more.

  My voice rises a notch. “What’s going on? TELL me! You have to tell me.”

  His teeth chatter. His face is red. Sweat is pouring off him, yet he is shaking as if it is winter. He tries one more time. “I had a cold … so I …”

  Now I panic. “Terence, this is bullshit. Tell me. NOW.”

  He gives in.

  “The cancer is in my lungs. I have six to nine months left.”

  His lungs!

  What?

  My fingers and toes leap with electricity, the electricity of fear.

  I have felt a shock like this only once before in my life, at nineteen years old when I rode my motorbike around a blind curve straight into an oncoming car. The car hit me, the motorbike fell under the wheels, I rolled over the hood and my shock said the same thing then as it is saying now: This cannot be happening. On that winding road in France thirty years earlier, however, the shock instantly resolved into bemused acceptance: “Oh, shit. I’m going to die. What a pain.”

  This time, lying on the bed beside my shaking husband, the shock does not resolve. I have been holding the fear at bay for more than a year now. With this one instant, it explodes inside me and I can barely breathe or think.

  Over the next hour he pants in bed beside me. Sweat soaks the bedclothes. Little by little the story comes out.

  Dr. Turner had advised scans every six months, to monitor any possible spread. I remember the first one, the previous April, and our relief when it came back clean. Without telling me, Terence had the second one here in Lexington. Alone in a radiologist’s office at St. Joseph Hospital on February 12, 2002, Terence saw the faint dusting of flecks in his lungs. Two weeks later, again alone, he had a second scan. The records from this visit call them “nodules, highly suspicious for metastasis.”

  More than two months went by as he kept his secret. He went to work. He came home. We read, played games with the kids, drank wine, had dinner with friends. He found an oncologist, met with him, planned a course of action. He said nothing to me. I suspected nothing.

  Yet, with this revelation, some odd behavior becomes clear. He has been packing up things and sending them off to friends. Cameras. Books. Paintings.

  “I have too much stuff,” he told me. In retrospect, the sentiment is so bizarrely improbable I wonder how it escaped me. What betrays his secret is not the illness, however. It is the medicine.

  Without telling anyone, the oncologist and he together decided on a treatment. The side effects of the injection that Terence took in the morning are already kicking in.

  What was he thinking?

  He wanted to spare us, he explains. If the treatment succeeds, and he is cured, then we never have to know how close he has come. If—as he expects—the treatment fails, he will at least have spared us months of anguish. He even has been plotting to prepare us for the inevitable. He planned to stay at work a little later every night—without mentioning anything to us, of course—so that we would gradually get used to life going on without him.

  What was he thinking?

  I am exasperated, shocked, annoyed, horrified, amused, pained, incredulous.

  And very, very, very touched.

  Even in this, he is acting so much like himself. How could he carry this burden alone for so long?

  “Did you think I would just not notice if you didn’t come home one day?” I ask him. I lie with him until, exhausted, he finally falls asleep.

  In the bedroom next door, Terry is sitting quietly. Now he calls me. In an older-than-thirteen voice he asks me, “Mom, is there something you should tell me?” I make a quick assessment. He needs to know what I know. He doesn’t deserve to hear what I fear.

  “Dad’s cancer has come back. He’s got a good doctor, and we are going to do everything we can to keep him well,” I say. He is troubled but asks no more questions.

  9

  Throughout that night, I sit alone in our dark living room.

  Everything has depended on Dr. Turner’s “we got it all.” I also remember him saying that if we made it a year past the surgery, chances were good we would be home free. We made it through sixteen months. Bad as the cancer is, rare and unknown as it is, everyone seemed to agree that if it was cleanly excised, we would be safe. If some particles escaped, no matter how tiny, we would be doomed.

  They have escaped.

  Everything is different now.

  Just as in an old movie, the lightning bolt of that recognition lights up the landscape of my life. Sitting alone that night, I suddenly see everything as a negative of itself, the reverse image of the way it appeared before.

  In my mind, we had tamed this cancer into an annoyance. All at once I see it for what it is—a killer. After the shock of Terence’s surgery, the future again seemed endless and any reckoning far away. Even with the cancer in our past, when I thought about our days ahead, if I thought of them at all, they still seemed like tissues, popping up to use as I pleased and discard at will. The lightning bolt reminds me of what we know but have ignored till now, that these days have a number. Now, I suddenly realize, tomorrow may be today.

  Fear freezes me. For with this reverse-image picture comes a stabbing sense of anticipated loss.

  In the nearly nineteen years since we collided in China, we have settled into a feisty but loving accommodation. Our fights have ends now, and our disagreements resolve. We find more to like than dislike in each other. Still, in the press of ordinary days, we spend much of the time grappling with the things that annoy, things that need fixing, things that trouble or disturb. Why can’t you pick that up? Why did you say that? Can’t you stop doing that? It is no longer the angry and aggressive battering of two strong-willed people. It is instead the mindless daily scrabbling of two harried parents.

  Yet in one second, that lightning bolt shows me the things I have ignored.

  It shows me what I will lose if I lose him.

  All through that dark Kentucky night, as Terence lies upstairs asleep, I am awake downstairs. The future grows foggy with my fear, the past reshapes itself. As I reprise memories, I see things I have forgotten, or have never seen before.

  In the middle of my memories of conflict and strife in China, I suddenly discover the memory of another dark night, when, almost paralyzed with anxiety over some recrimination from my harsh boss, I am similarly unable to sleep. Terence rises from our warm bed and, bundled in a People’s Liberation Army greatcoat, walks me around and around nearby Ritan Park until dawn when I can finally collapse, exhausted.

  I remember him screaming at his boss; I had forgotten his invective at mine. “She can’t talk to you like that!” he rages. “You’re twice as smart as she is!” His anger makes me believe, for a moment, in my own strength.

  I remember day
s in New York when, indignant at his strong views and his refusal to yield, I slam doors. Yet tonight my memory retrieves a different, long-buried moment: It is afternoon in the city and we are walking down Broadway when, without warning, he hip-checks me into an open doorway and I fall. I look up in fury just in time to see three figures, guns drawn, charge past. Terence is standing between me and them. He is bossy. He is pushy. Without a second thought, he puts himself between me and danger.

  As night turns to morning, I realize more clearly than ever before how much over the years I have come to see myself through his eyes. The moves I would not have made. The chances I would not have taken. I leave a job that has been my home since college. I pack up our house not once but three times. Sometimes he infuriates me with his insistence that I can do the things I fear doing. He never backs down.

  Tonight as he lies upstairs, the memory of our early trip to Florida resurfaces. Only this time, in the light of the electric shock of my fear, I see something I have long forgotten about the alarming, crazed would-be helicopter pilot I married. My memory refocuses, this time not on him but on me.

  There I am. I am sitting in the open door of a Cessna. I am wearing a yellow helmet and red sweatshirt. A smile freezes on my face. Behind the smile is pure terror. While Terence is pursuing his quixotic quest to get a pilot’s license in four days, I head off for my own adventure.

  As soon as I sign up at a nearby skydiving school, I regret my impulsive choice. I am afraid of flying, so the whole endeavor is weirdly masochistic. I want to quit but I am too proud to back down. After a half day of training, the instructor straps me into the chute. I am almost sick with fear. We prepare to taxi. I think I may faint.

  As I look out the door of the plane, suddenly he is there. I don’t know when he arrived, or how he has found me, but there he is, in his burgundy windbreaker and newsboy cap. He looks at me in a way that I have never seen before, from anyone. I see pride. Deep, unadulterated, unabashed pride. He knows I am terrified. He knows I am going to go through with it anyway. And he is proud of me. He snaps a photo. He waves.

  As we climb over the same blue and green landscape he navigated the day before, I think: I am doing something new. Something brave. Something fun.

  I am flying.

  I step out the door of the plane into the wind. I hold on to the wing above my head and brace my feet on a tiny ledge. I throw myself backward into the air. Suddenly, everything is still and quiet, and I am hanging from the sky. He is there when I land.

  Alone in the dark sixteen years later, I realize for the first time that this crazy man doesn’t just believe he can fly.

  He believes that I can too.

  I resolve two things that night.

  The first is that I will never let another day go by without telling him how much I love him, and how much he means to me and the children.

  The second is that I cannot let this happen.

  I cannot just let him die.

  10

  Two days later, on May 8, 2002, I accompany Terence to his next visit with Dr. Scott Pierce, the oncologist who has been secretly treating him.

  Dr. Pierce is a general oncologist, the kind you find all over the country on the front line of everyone’s everyday cancers. He sees breast cancer and colon cancer and skin cancer and leukemia. He administers chemotherapy and radiation and advice and comfort. I flinch at the sight of the sick people in the waiting room, the turbaned women and men with canes and walkers.

  A nurse calls us to an examining room. After a few minutes, Dr. Pierce opens the door. He spots us both sitting there.

  He raises his eyebrows. “So you told her?”

  Terence nods.

  I have a fistful of printouts. Names of doctors. Names of hospitals. Names of drugs and descriptions of clinical trials. I thrust them at Dr. Pierce.

  He looks over at Terence.

  “This is who you were protecting?” he asks.

  Terence looks sheepish. He shrugs.

  “Guy’s a head case,” I say.

  Dr. Pierce looks at Terence again.

  Terence shrugs again.

  “She may save your life,” Dr. Pierce says.

  • • •

  For the next six weeks, Terence continues his treatments. As he and Dr. Pierce have agreed, he gets daily injections of interleukin-2, a type of hormone that stimulates the body’s immune response to fight off invaders like cancer. For reasons no one seems to understand, the chemotherapy used to blast many other kinds of cancers has little effect on kidney cancer. Interleukin is naturally found in the body and helps fight infections; sometimes it even has to be suppressed—for example, when a patient is undergoing a transplant. About a decade before Terence met Dr. Pierce, the FDA approved the synthetic form of IL-2 to treat kidney cancer and melanoma. In some cases, for reasons no one completely understands, the injections can cause the body to rise up and beat back the tumors.

  There are two ways to administer IL-2. Patients choosing the high-dose method are confined to intensive care wards and given intravenous drips every eight hours. This method has some real promise: In one study, 7 percent of those undergoing this treatment had their cancer disappear, at least for a while. I read further, though, and realize that this is a game of Russian roulette. Four percent of the patients in the same study died from the side effects of the treatment. One hundred chambers in the gun. In seven chambers, something resembling a cure. In four, live ammo. No one knows who will get which. Point the gun at your temple, and fire.

  The low-dose version—the kind Terence is doing—involves a shot every day. Same drug, lower intensity. The side effects, although less dangerous, are the same. Fever. Chills. Shaking. Diarrhea. Nausea. Vomiting. It’s like suffering a violent flu and malaria at the same time. But even low-dose IL-2 apparently offers some promise: 15 percent of those taking it will respond, the brochure says.

  Terence begins going to the office at Bob-O-Link Drive first thing in the morning, to get the shot over with before he goes to work. But we quickly realize that the terrible symptoms begin about six hours after the injection. If he gets the shot at 9:00 a.m., then by midafternoon he needs to be helped home from the office. We switch the appointment from first thing in the morning to last thing in the afternoon. If he gets the shot at 3:00 p.m., he can make it through dinner before the shaking begins.

  It is not enough. The Asia Center is in frenetic start-up mode. Terence struggles to get himself to work as often as he can. But on some days at 3:00 p.m., he is felled by the shaking. On other days, he must leave the office early for the shots. On many days, even the best days, he falls asleep sitting up, the victim of sleep lost to chills, fever, and vomiting. Reluctantly, he resigns. His job at the Asia Center thus becomes the first casualty of his illness, and of our quest for a cure. He never works full time again. He is sixty-one years old.

  Later that week, I visit a therapist.

  “I can’t survive without him,” I say.

  “What does he say when you feel this way?” she asks.

  “He says I can handle anything.”

  “You’ll need to say that to yourself from now on.”

  Alone with Dr. Pierce, Terence had just learned he was going to die. Perhaps soon.

  What was that moment like?

  Seven and a half years after he and Terence met I fly back to Lexington to visit Dr. Pierce. He has moved from his office on Bob-O-Link and now has a much smaller practice, his office looking out over a parking lot. He sees me in his office after 6:00 p.m., when all his patients have left. He still has a couple of hours of dictation left to go. He will return to his wife and children after eight, as he does on most days.

  Dr. Pierce remembers Terence well.

  “I can still see him,” he says. He wore a trench coat. He wore a fedora. “He was a very interesting man.”

  During the clandestine meetings back then, before Terence let me in on the secret, they discussed Terence’s options. Dr. Pierce explained the odds—that th
e average length of survival after a kidney cancer metastasis is six to nine months. Terence’s reaction surprised him.

  “The first thing he said was: ‘Doc, do you have any female patients who have recently died? I need to find a widower so my wife can meet her next husband,’ ” Dr. Pierce recalls. “I’ve never had anybody say anything like that before.”

  It doesn’t surprise me that Dr. Pierce has never before had a patient ask a question like that. Nor does it surprise me now that Terence asked it. Having looked after him for all those years, I now know for certain why the first thing he would think about would be to look after me.

  11

  Throughout the summer of 2002, after Terence and I leave Dr. Pierce’s office, I research interleukin-2 as thoroughly as I know how. I discover the Cytokine Research Group. I look up papers in obscure journals. Scientific papers compare high-dose interleukin to low-dose. They compare interleukin to interferon, a similar protein. They compare interleukin to nothing. They are nerdy publications—important to the progress of science, I am sure, but maddeningly useless to me. They compare drug pathways, molecular structures. There are papers that I think of as the “Lourdes reports” that describe unexplained cases of spontaneous remission following some unlikely treatment.

  There are papers whose titles I can’t even fathom, like one from the International Journal of Clinical Oncology, published five years before Terence’s diagnosis:

  Clinical efficacy of adoptive immunotherapy by IL-4 activated tumor-infiltrating lymphocytes in patients with advanced cancer