The Cost of Hope

by Amanda Bennett

  The newsroom is particularly daunting for me. The paper is teetering on the edge of the disaster that will engulf all newspapers all too soon as readers and advertisers flee to the Internet. I know I am the first woman editor in the paper’s 174-year history. It’s in all the news stories. Yet I don’t fully realize what that means until I take stock of the newsroom on my first day at work. The entire place is a hearty, overexaggerated paean to maleness, from the brooding nineteenth-century-style editor’s office that looks straight out of Dickens—oversized mahogany credenza, dark walnut paneling, and stand-up desk—to the trophies of past editors’ athletic pursuits. The crossed oars of one—a rower—dominates one end of the newsroom, flanked by the hockey jerseys of another. Framed overwrought tributes from one past male editor to another dot the room.

  Others apparently have noticed too. When I arrive that morning, I find a gigantic pink girdle suspended across the front of my office. It is a reference to a wiseguy remark I make in my opening speech about relaxing and taking it easy in our jobs. There is a sign attached: Welcome Amanda Bennett, First Woman Editor. It is an affectionate and hopeful sign.

  I think.

  We throw ourselves into the city. We force the grousing children—by now at ages fourteen and nine just a touch too old for this—into field trips. Independence Hall. Carpenters’ Hall. Valley Forge. We walk on streets still covered in cobblestones. “Benjamin Franklin probably walked here,” we tell them. “George Washington probably sat here.” Philadelphia has become a mecca for chic and edgy food. Le Bec-Fin is called America’s finest French restaurant. All around it, new restaurants sprout up. Stephen Starr opens the sexy Striped Bass. El Vez. Buddakan. The futuristic Pod. The city also spews trendy BYOs that you need to reserve three months in advance.

  That’s not where we go. Instead Terence prowls the narrow streets of South Philly, with their white-sided rowhouses, narrow front porches, green aluminum awnings, and front windows that flaunt decorations for every holiday. He finds the old Philly red gravy joints and we drag the kids out every Friday night for spaghetti and meatballs or ziti with big, fat sausages in thick red sauce. Criniti’s. Dante & Luigi’s. Tre Scalini. Ralph’s. Vesuvio. Before a month is out we have sampled every cheesesteak. Pat’s. Geno’s. Jim’s on South Street. John’s Roast Pork on Snyder. Terence finds the bakeries (Termini Brothers, Isgro) and the best cheese shop in the Italian market (Di Bruno Brothers). He learns to make pasta e fagioli and Italian wedding soup. We find a Quaker school for the children—ninth grade for Terry, fourth grade for Georgia—just a few blocks from my new office.

  And so we settle in to what will be our last home together.

  This is Philly, so we buy a Philly house, a tall, narrow brick rowhouse with red shutters and a basement door that slants from the house to the sidewalk. It was built in 1850. It is being used as an apartment building. We rip out the insides and turn it back into a home. I would be happy living with the chairs I bought from Goodwill when I was in college; with the coffee table made from a giant discarded wooden spool used for electrical cables; with the old church pew I bought when a Methodist church in Toronto was hollowed out to make room for a Hare Krishna enclave.

  It is only because of Terence that we live like grown-ups. Over the years he makes us buy proper wing chairs. Antique rugs: two from China, one from India, one from Pakistan. A mahogany china cabinet. A grandfather clock. Floor-to-ceiling white bookshelves filled with novels and plays and poetry, with vases and family photos. He hangs oil paintings and sketches he has bought all over Asia. A still-faced Vietnamese girl, her hands folded quietly in her lap, looks hauntingly down on our dining table.

  Time has softened us both.

  Yet we still lock horns in angry arguments, usually when he refuses to do something exactly the way I want, or I refuse to do something exactly the way he wants. I explode at the sight of him sitting in the living room chair, hat and coat on and car keys in his hand as I try to get a teen, a preteen, and me out the door in the morning. There is lunch money to dole out, shoes to be found, lost homework papers, breakfast to be levered in. Why won’t he help? There is so much to do!

  He won’t budge.

  “You think you can leave at eight and get there by seven thirty,” he says, not stirring from the chair. “You always have.”

  I crab and rant. Why do you always …? Why don’t you ever …? Why are you so …? We trade mindless barbs. After we drop the kids off, I fling the car door shut and stomp off to work. A half hour later, I see his cell number pop up.

  I snarl at the ringing office phone: “I’m not answering. I’m still mad. You can just forget it. I’m not speaking to you.”

  I pick up the receiver.

  I hear him say: “I’m sorry …”

  Then there is a long pause.

  “… that you are such an asshole.”

  I laugh. I can’t help myself.

  Then comes another day, and another meaningless fight. What is it about? I no longer have any idea. Afterward, I drive myself to work, talking to myself all the way, replaying the argument, winning this time. Thinking of the words that will once and for all prove me right and him wrong. Chewing out the phone for daring to ring, even as I bring the receiver to my ear.

  “All right! All right!” he growls. “I accept your damned apology.”

  My assistant pokes her head in the door to see why I am laughing so hard.

  Over dinner one night, I tell the children about how, years earlier, Terence and I watched a dramatic helicopter rescue of an injured skier in Glacier National Park. “That was the day Daddy locked the keys in the car,” I say.

  “Mommy,” Terence says.

  “Mommy what?” I ask.

  “The day Mommy locked the keys in the car.”

  “Daddy,” I say.

  “Mommy,” he repeats.

  Terry slaps his hand on the table.

  “WHO locked the keys in the car?”

  “Daddy.”

  “Mommy.”

  Georgia kicks the table.

  “WHO locked the keys in the car?”

  “Daddy.”

  “Mommy.”

  Each time we revisit the story it is the same. Each time the children demand to know the truth. They stamp their feet. Who did it? Who locked the keys in the car?

  Daddy.

  Mommy.

  Terence is long gone, and Terry is well past drinking age when something dawns on him.

  “I was so mad at both of you. I thought you were messing with us because we were kids,” he says. “I just realized now that you both actually BELIEVED it.”

  “It was Daddy,” I say.

  Meanwhile, just because we aren’t doing anything to treat the cancer doesn’t mean we aren’t doing anything at all. Every three or four months we return to the Cleveland Clinic to see Dr. Bukowski and to make sure that the cancer is keeping quiet. While we live in Lexington we drive there. When we move to Philly, he flies. The medical records that I collect after his death give a stark, professional account of these punctuation marks in our lives.

  July 21, 2003: Stable. November 10, 2003: Stable. March 11, 2004: Stable. August 30, 2004: Stable; see him in three months. January 31, 2005: Stable. March 21, 2005: Stable.

  At each visit, Dr. Bukowski orders tests that will let us see what the cancer is up to. Sometimes there are whole body scans. Sometimes there are scans of his abdomen, or his lungs. There are blood tests and X-rays. Every three or four months we hold our breath while we wait for the news. Every three or four months we exhale when the news is good.

  As I look back over the medical records from that time, I see that we are billed at least $4,500 for each trip to the Cleveland Clinic, including separate bills for scans, for Dr. Bukowski, and for the doctors who, behind the scenes, read the scans. The bills for our November 10 visit, copied from our UnitedHealthcare insurance statement, go like this:

  $2,819 Cleveland Clinic

  $1,449 CAT scans

  $118
Dr. Bukowski

  $318 Dr. Barbara Risius

  $280 Dr. Brian Herts

  $329 Dr. Brian Herts

  Three years, eight visits, from $4,500 to more than $5,300 each. That’s more than $36,000 during a time when we are simply watching and waiting. I do not realize this until I look over the records, and I am sure Terence never does know. How do we spend $36,000 without thinking about it?

  I am flustered and disorganized with bills, but I am a pretty good shopper. So is Terence. He grew up with lace tablecloths and fresh flowers and his mother’s twelve-place silver set that I use today and will someday give to Georgia. I grew up with secondhand furniture, buying groceries on credit at the neighborhood store, and going with my mother twice a week to the Laundromat on the hill with the family’s washing. Yet we both arrive at the same place: Both of us buy sensible things at good prices after serious consideration. Yet we rack up $36,000 in charges without a thought.

  When I shop for groceries I check my receipt to see if the two-for-one ShopRite special on yogurt has registered. Terence buys huge boxes of cereal at Sam’s Club. We shop carefully for shoes, for tires, for lightbulbs, lawn mowers, and toothpaste. It never occurs to us to shop for CAT scans.

  Month in and month out, despite the reassuring news, it remains hard to do nothing when I have promised myself to do everything I can. So I do my best to keep the other half of the promise I made on that dark night in Lexington.

  Every night as we sit down to dinner—the proper dinner he insists on with place mats and napkins and serving dishes, forks on the left, knives and spoons on the right—we hold hands and thank God that we are all together again. Every day, at least once a day—by cellphone, by email, in person, at breakfast, or just before bed—I tell Terence how much he means to me. How much he means to our family. How much I see and appreciate everything he does for us. I tell him how funny he is, and how smart. I tell him what a good dad he is, and what a good friend.

  And every single day, I tell him just how much I love him.

  And so we continue until December 19, 2005. Six days before Christmas, Terence returns from his visit with Dr. Bukowski with the news that his cancer has begun to grow again, and our long wait is over.

  16

  On December 19, 2005, everything changes.

  From this moment on, the rhythms of our weeks will be punctuated by the pace of a clinical trial of an experimental cancer drug. We join forces with a doctor who is staking his whole life on believing that everything in the cancer world is about to be transformed, and that this drug is only the beginning.

  After that, the days of our lives together are guided by Dr. Keith Flaherty—a doctor we have just met—and girded by sorafenib, a drug whose name neither Terence nor I can spell, and bevacizumab, a drug whose name neither of us can pronounce. Our calendar is linked with the calendar of the trial and our emotional ease rises and falls with the timing of the monthly scans that accompany the treatment.

  Yet in many ways, nothing changes at all.

  Today, as I review the records and the research, the stark reality of even the most optimistic outcome leaps out at me. Even the best chances were slim, I can see in retrospect. Yet back then, hard as I looked, I saw none of that. Terence and I believe in these drugs with a belief that is beyond belief. Partly as a result of our belief, for the next year and a half, these drugs buy us a normal life.

  They buy us hope.

  Our life is so normal, in fact, that I have trouble recalling much of what happened during this time. Yet today, to jog my memory of the sheer ordinariness of our days, I have only to pop into the VCR one of the dozens of home videos Terence created. On March 26, 2010, two years, three months, and twelve days after his death, I summon the courage to pull a few home videos from the family room shelf, searching for the clues to help me remember.

  On the tapes, hours and hours and hours of images unfold, scenes from our lives here in Philadelphia. Girls sit at the kitchen counter on high-backed chairs—Georgia, and her friends Alex, Taylor, Kaitlyn, all smiles and giggles. Our flower boxes fill and empty and then fill again. The flag goes up and the flag comes down. In Halloween costumes, Terry, Isaac, Ben, Maddy, Nico, and Suzie mug for the camera. Georgia shows off a school project. Terry steals a hug with Suzie. “Go away!” he shouts over his shoulder at the camera.

  Georgia has a birthday party—perhaps my single proudest “good mom” moment. At our local discount store, I buy cases of chocolate syrup and whipped cream, and I stay up late making vats of Jell-O. Then I put the girls into bathing suits and turn them loose on one another. I hear Terence behind the camera warning the shrieking and sticky would-be attackers away from him as ropes of chocolate and chunks of Jell-O fly through the air.

  Our house fills with friends. They make coffee in our kitchen. They twirl pasta. They drink wine and talk. Everywhere, there is food. Crumb cakes. Upside-down cakes. Party treats cover the tables. Pots simmer on the stove. Terence and I both wear aprons.

  In one Christmas shot, we torment the children as they loop silver strands through the branches of the tree.

  “Christmas in our new house!” I cry. “Where will we be next year?”

  “Not next year,” Terence replies. “TWO more Christmases in this house. THEN we move.”

  The children ignore us. I cover them with Christmas kisses. Then I vanish off the screen. “And here’s a kiss for the cameraman,” I hear myself saying. In the background, I hear a brass quintet play “Joy to the World,” the minor chords and major chords interchanging seamlessly, the darkness and the light weaving in and out.

  The dailiness of our lives.

  That is what hope buys us.

  17

  The last report we get from the Cleveland Clinic on December 19, 2005, doesn’t sound all that ominous to us.

  Terence has gone there as usual for his quarterly checkup and scan. All the report says is that the scan shows “further progression of a right upper lobe mass, but stability in numerous small lung lesions.” It sounds okay to me and to Terence, different certainly, but not that much different from any of the other reports we have received over the past four years.

  But Dr. Bukowski sees something else. The cancer, indolent, sluggish, and lazy up till now, has begun to grow again. That is enough for Dr. Bukowski. With the same certainty with which he told us in 2002 to wait and do nothing, he now galvanizes us to action. Perhaps it is now time to investigate something more aggressive—some clinical trials and treatments closer to home. He tells us about Dr. Flaherty, who is beginning a promising study in Philadelphia. Our next stop, Dr. Bukowski tells us, should be Presbyterian Hospital, where Dr. Flaherty will explain to us what he hopes the clinical trial he is conducting will achieve.

  Joining a clinical trial has been a focus of our obsession right from the beginning of Terence’s illness. For a cancer like his—with no really effective known treatment—it’s the only hope for most people. You can enter the lottery using the known treatments, as Terence and Dr. Pierce secretly did, and take the chance that you will be one of the lucky ones mysteriously helped. Or—if that fails—you can enter a clinical trial. That’s a lottery with even longer odds. Yet this is perhaps part of the reason lotteries and horse racing and Internet gambling have such appeal. The promise of the big payoff overwhelms our judgment about our slim chances. Why shouldn’t we be the smart ones? Why shouldn’t we be the lucky ones? Why shouldn’t we push the bell curve? Why shouldn’t we escape fate?

  To dive into the world of trials, though, is to dive into a pool writhing with serpents looking for diamonds. On Monday, April 25, 2011, ClinicalTrials.gov, the National Institutes of Health database of all such trials, lists 106,373 trials in 174 countries. There are 1,641 of them involving kidney cancer—and 678 of those are recruiting new subjects. That’s the same order of magnitude I remember from the years Terence and I were looking. There were—and still are—hundreds and hundreds and hundreds of trials, and no clear way of deciding which one t
o choose.

  Long before we even found Dr. Bukowski, we began our search for clinical trials that might help Terence. Much of the chatter on the kidney cancer listserv back in 2001, 2002, and 2003 involved finding, evaluating, and handicapping the various clinical trials and trading information about the doctors running them. It was information about clinical trials that I clutched when I met Dr. Pierce, and he politely considered and followed up. It was sheets on clinical trials that I thrust at Dr. Bukowski at our first meeting and that he resolutely ignored.

  So what did we consider over the years? On a white lined pad I recorded notes of the trials we were investigating. I scribbled place names: Memorial Sloan-Kettering. MD Anderson.

  Roswell Park Cancer Institute. Where is that? Buffalo. Buffalo?

  Fox Chase in Pennsylvania, from long before we have any idea where Fox Chase—a suburb of Philadelphia—even is. The University of Alabama and University of California, San Francisco. Even one in Nebraska. Nebraska??

  My notes show that the range of options we considered is staggering. Nonmyeloablative bone marrow transplant. I can’t even remember what that means anymore. I have to Google it: It’s a method of transplanting donor bone marrow cells that isn’t as toxic or dangerous to the patient as traditional ways. That part sounded good. But whose cells? His only blood relatives are his cousins and his newfound half siblings. We imagined the conversation: Hi there! We haven’t spoken for the past fifty years. Welcome to our lives. Can we have some stem cells? We did some more research. It didn’t sound promising enough to cross that bridge.

  On the pad is a note to myself: “Chemo and irradiation. It improves the graft vs. tumor effect (check this) and the immune response to the tumor.” From the listserv we learned that Janice Dutcher—at Our Lady of Mercy Medical Center in the Bronx—was doing a trial of ABX-Epigenics. What’s that? Does the listserv even have that right? There was one trial of Iressa at Vanderbilt and another trial of thalidomide, the antinausea drug that created babies with flippers instead of arms and legs, being tested in combination with interferon. Fox Chase is doing CCI-779. Virginia Mason is doing Gleevec. Cleveland Clinic has a trial of Neovastat, made from shark’s cartilage. There’s one vaccine trial, and at MD Anderson a trial of SU5416, which inhibits the VEGF receptor. The names, places, drugs, concepts are dizzying. How do we choose? Whom do we trust?