The Cost of Hope (19 page)

We begin the trial at the end of February 2006.

We pick the Nexavar up at the pharmacy inside our Superfresh grocery store. Gino, the pharmacist, has to special order it. It’s not something he keeps on hand. Terence takes one tablet every day,
400 milligrams of the drug. Once a week, Terence drives across town from our rowhouse on the east side of Philadelphia and across the Schuylkill River to Presbyterian Hospital, a part of the University of Pennsylvania, on the west side of the city, where he sits and reads for an hour while he gets his Avastin drip. On March 28, 2006, he finishes his first four-week cycle and has his first CAT scans to see the results. Nothing much has changed.

Another month. Another cycle. Another CAT scan. Same results. At least the tumors aren’t growing anymore, we think. But by June 2006, the fourth month of the trial, the scans have a new story to tell. Not only are there no new lesions in his lungs, the biggest of the original ones have begun to shrink. They are so much smaller, in fact, that Dr. Flaherty’s notes pronounce Terence a confirmed “partial response”—meaning that the metastases are now at least a third smaller than they were when we began.

The Avastin/Nexavar combination is working. We have dodged the bullet once again. It never occurs to me to think: Just how long will this work? It is working. That is enough for me.

And so our life resumes a normal rhythm. I drive the kids to school. Terence picks them up. Terry goes to rock school, where he learns to play Radiohead. The Grateful Dead. Queen. Frank Zappa. Georgia turns twelve and heads off to summer camp. Together we sew a blue flowered dress for the end-of-camp dance. Terry is seventeen and heading into his senior year in high school. Terence continues teaching journalism classes at Temple University and Drexel University.

In between teaching and Avastin drips, he packs boxes for the troops in battle, loading them in our kitchen with deodorant, wet wipes, Mars bars, Kool-Aid, beef jerky, batteries, and magazines. This veteran of naval intelligence and the air force reserves walks almost every day the four blocks to the post office on Fourth
Street with a box addressed to “Any Soldier.” Behind the counter, Deborah, the smiling lady with the long red hair extensions, becomes his friend. Every so often a soldier in Iraq or Afghanistan drops him a thank-you note.

Meanwhile, our cache of cats has increased to four. Finally, after many tries, we find a cat who loves Terence as much as Terence loves him. The tiny male tiger I rescued from drowning at a Lexington horse farm has grown into a majestic beast. Terence names him Hank. Yet the children and I still recall him as a ferocious six-week-old kitten with the genes of his barn-cat parents. He terrorized the older cats, whacking them across the nose with his tiny paws and roaring across the room straight up the drapes, where he had to be rescued from the top. Georgia and Terry and I call him LT—short for “Little Terror.”

Even after the kitty grows up, the children and I refuse to call him Hank. He is LT to us. Terence refuses to call him LT and will only refer to him as Hank. The four of us cannot agree even on his nametag, which, as a result, reads: “LT Hank.” So to the vet he becomes Lieutenant Hank.

In the dark days just after Terence’s death, it is clear that LT is mourning as well. He prowls the house. I grow sentimental.

“Maybe we should start calling him Hank now?” I suggest to Terry.

Terry’s head snaps up.

“No way!” he says. “Dad and I were both very stubborn about that. I’m not going to let him win just because he died.”

Looking back I ask myself, over and over again: How much of what I did for Terence wasn’t really for Terence at all, but for me?

How much of my belief in this clinical trial came from my need to believe? How much did I work to save him because I couldn’t imagine life without him? How much was for me? How much was for him?

For during this time of the clinical trials, I needed him more than ever. He was the only thing, I believed, standing between me and madness.

From the moment we had arrived in Philadelphia in the summer of 2003, life promised to be difficult enough even under the best of circumstances. The
Inky
was a feisty, proud paper, well aware of its storied past as an eighteen-time Pulitzer Prize winner and covetous of more. For years before I arrived, the
Inquirer
and its owner, Knight Ridder, had been locked in mortal combat over the proper role of the paper. Was it to cover wars and Washington; to have correspondents in Jerusalem and Johannesburg, in Paris and London, in Tokyo and Beijing? The staff believed its stage was the globe and its audience the world. Knight Ridder—the paper’s owner—was alarmed at the hemorrhage of readers at all metro-area papers and was fighting for more coverage at home: libraries, schools, bond issues, Little League, garden clubs. The newsroom was indignant at what it saw as a demeaningly reduced vision of its role. Knight Ridder was scornful of what it saw as the newsroom’s self-indulgent self-image.

The result? An odd—but ferocious—civil war. Knight Ridder was constantly furious with its biggest paper, once its biggest moneymaker. The newspaper was in permanent revolt against its owner, rebelling in ways both overt and silent.

When I arrived, the scars of the last decade of this fight were still evident, made worse by recent deep staff cuts. At least, everyone assured me, all that was behind us now. We could make a fresh start, they said. The worst, they said, was over.

The worst, it turns out, was just beginning. Within just a few months, the
Inquirer
took the sad lead in the decline and fall of the American newspaper.

Over the next three years we did manage to eke out some fantastic journalism—the kind that makes me happy to do the work that I do, the kind that Terence was pushing me to do all along. We unearthed illegal activities by a powerful state senator—he eventually went to jail. We so infuriated the Bush/Cheney campaign that they posted my email address on their website, and for weeks I drowned in thousands of hostile emails.

We even brought the world to our doorstep. On Saturday, February 4, 2006, just as Terence and I are about to join the clinical trial, he helped me work through another scary situation. I am the only editor of a major newspaper in the United States to decide to run the Danish cartoon of Mohammed wearing a bomb on his head instead of a turban—the cartoon that causes riots in Europe. By the following Monday, protesters are in front of our building carrying signs with my face and the face of Hitler. Joe Natoli, my publisher, and I plunge into the crowd, shaking hands, talking to families, listening to their stories. The crowd turns friendly. I emerge with several new copies of the Koran. The pride I see on Terence’s face—the same pride I saw that long-ago day on the airstrip in Florida—keeps me going, even when I am scared.

Meanwhile at work, I am pulled in impossible directions. It feels, I tell Terence, like being stuck in a bog with a dying, thrashing
rhinoceros. Move two-thirds of the staff to the suburbs, comes the order. Cut cellphone bills. Cut out comics. Cut 10 percent of the budget. Cut another 10 percent. Cut another. Make the budget work. Make the paper great again. Reach out to the world. Be the voice of the community. Cut costs. Do great journalism.

All through it there is only one safe spot. One place where I know I am okay. One place where at the end of a day when I feel like I can do nothing right, I feel again as if I can do no wrong. Is it this safe spot that I am protecting? How much do I need Terence to stay alive for me?

Finally the paper—and all of Knight Ridder—dies, and a whole new nightmare begins. By March 2006, just as Terence is beginning his first cycle of Avastin and Nexavar, Knight Ridder is sold, and the
Inquirer
in turn is itself put up for sale.

For the next three months, until June, Terence does another cycle of Avastin and Nexavar. And another. And another. Every month we hold our breath waiting for the scans. Every day at work, slender young investment bankers in black suits with slicked-back hair—these representatives of potential buyers are all men, and all in their thirties, it seems—stride through the newsroom en route to view our PowerPoints in the seventeenth-floor boardroom.

The men scribble furiously during the presentations on money. They pull out their BlackBerries and leave the room to refresh their coffee and Diet Coke when I begin my speech about journalism and its importance to the community. I know why I bore them. They want to strip costs from the paper, make it profitable, and resell it. Great journalism? My life’s work? Meaningless to them.

Every night I leave exhausted, frantic, and frightened. Every night Terence walks me till I am calm. Just as he did in Beijing.

I worry about the paper. Worry about who will buy it. Worry about how many they will lay off when they do. Worry about the
news, the community, the people, the kind of journalism I have spent my life practicing.

What I don’t tell Terence is the other thing that worries me.

I worry about my health insurance.

For it is my health insurance, from my succession of newspaper employers, that has paid for Terence’s surgery with Dr. Turner. It is my health insurance that paid for his interleukin. For Dr. Pierce. For all those years with Dr. Bukowski. For Providence Portland. The Cleveland Clinic. Presbyterian Hospital.

I am under no illusion about my future with the paper after it is sold. Chances are 99 percent that I will be gone. Rationally, I know I will find a new job. And, rationally, I know about COBRA, the federal law that means that I will be able to buy insurance for eighteen months if my job-related policy suddenly goes away. Terence, at sixty-five, is eligible for Medicare. Rationally, I know all this.

Nonetheless, I am totally, irrationally, completely, and almost paralyzingly fearful. What if something goes wrong? One nanosecond of break in our insurance coverage and Terence becomes practically uninsurable. Then the medicine that is keeping him alive is suddenly out of our reach.

What would happen to him then? What would happen to us? What would happen to me?

Is this how all those people across the country are feeling who face diseases like ours without the kind of help we’ve had all along? For how many people like me and Terence does the loss of a job feel like a death sentence? How many people wind up with no health care to fall back on when something big changes in their lives—as it is about to in ours?

On May 23, 2006—our nineteenth wedding anniversary and the last day of Terence’s third cycle on Avastin—the paper is sold. My new boss is a brash, mouthy, blindingly and abrasively self-confident local PR man who has persuaded a group of banks,
unions, and local millionaires to put up more than $500 million for what, in a column five days later, I will call “the great experiment.”

Cycle after cycle, the drugs appear to be advancing against the cancer. Increasingly, we grow confident. Increasingly, the treatment just becomes part of the background of our lives. Every day Terence takes his Nexavar tablet. Every two weeks he goes for his Avastin drip. Every month we hold our breaths before the CAT scan and exhale in relief when we get the good news.

None of this is without a price. There is nothing of the debilitating wasting, hair loss, and nausea of traditional chemotherapy. Terence is far from debilitated. But the side effects of the drugs, the treatment, and the enervating new routine do get him down.

Terence has small veins. The constant blood draws and needle insertions for the drip are agony.

“They are turning me into a pincushion!” he grouses over dinner one night.

Only one nurse seems to have a gentle touch. She is chubby and cheery. Terence is happy when he sees her and complains loudly to anyone who will listen when she is not available. “Where is my roly-poly friend?” he demands. “I want my roly-poly friend!”

Although nothing like the horror of the IL-2 or traditional chemo, the side effects are nonetheless persistent, vexing, and uncomfortable. There are rashes that embarrass him when they spread to his face. Itching that torments him, especially on his feet. The worst, though, is the constant stomach ailments. Day after day, week after week, month after month Terence struggles with symptoms that are very much like a bad stomach flu.

He is not a good patient.

He breaks the rules of the clinical trials. He shows up when he wants to show up. He cancels when he wants to cancel. Dr. Flaherty and the oncology nurse running the trial, Kathy Harlacker,
find out what I have known all along: My headstrong husband expects the world to adapt to him.

Usually it does.

“He showed on numerous occasions how important it was to him to maintain his rules on how to go about life on a day-to-day basis,” says Dr. Flaherty. “Kathy would note him as being the most free-willed among our patients in that clinical trial,” he says discreetly.

In 2011, I reach Ms. Harlacker at the University of Pennsylvania hospital, where she is still running clinical trials. She is considerably more direct: “I remember your husband well,” she writes to me. “He was a very fine gentleman. He pretty much tried to dictate to us how his treatment would go.”

Terence loves what the medicine is doing for his cancer, hates what it is doing to his life. Over and over he demands that Dr. Flaherty fix his problems for him. At Terence’s command, in an attempt to reduce the side effects, Dr. Flaherty reduces the dose of Avastin in May. In July, he discontinues the Nexavar for two days, hoping that a break will reduce the stomach turmoil. By August they give up on the Nexavar altogether. The side effects abate a bit. The metastases continue to shrink.

It isn’t until I have read the records from this period several times that I can confront the question that I have been pushing to the back of my mind: How much did Terence go through this only because he knew I wanted him to?

Did he suffer through this treatment only to protect me and the children? My head knows that wives and husbands and children and parents can cling desperately to their loved ones long after the loved ones themselves are ready to go. Was I so blind that I could not see this in myself? Did my irrational hopes for treatment and more life for him far outweigh his own? I have to
wait till my third visit with Dr. Flaherty after Terence has died before I can summon the courage to ask the question.