The Cost of Hope (26 page)

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 believe 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.

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.

Together, Dr. Flaherty and I look at the numbers—the result of the Avastin/Nexavar clinical trial. The average patient in his trial got fourteen months of extra life. Dr. Flaherty estimates that, without any treatment, someone at Terence’s stage of the disease would live three months. Terence got seventeen months—still within the realm of chance but way, way up on the bell curve.

There’s another bell curve that starts about where Terence’s left off. It charts the survival times for patients treated not just with Sutent, Avastin, and Nexavar but also with Afinitor and Votrient—drugs made available within the past three years. Doctors and patients now are doing what we dreamed of, staggering one drug after another and buying years more of life.

At the 2008 meeting of the American Society of Clinical Oncology, Dr. Flaherty presented the results of the clinical trial that Terence was part of. The slides and charts showed the other cancer doctors that Avastin and Nexavar work well on a wide variety of patients.

Yet of all the people who saw those slides, only Dr. Flaherty and I know that the solitary tick mark at seventeen months was Terence.

Only I know that those seventeen months include an afternoon looking down at the Mediterranean with Georgia from a sunny balcony in southern Spain. Moving Terry into his college dorm. Celebrating our twentieth anniversary with a carriage ride through Philadelphia’s cobbled streets. That final Thanksgiving game of charades with cousins Margo and Glenn. And one last chance for Terence to pave the way for someone else—or, as he might have said, for all those other poor sonsabitches.

This book grew out of an article published by Bloomberg News and
Bloomberg Businessweek
on March 4, 2010. I would like to express my appreciation to everyone at Bloomberg for the opportunity to expand the work into this book, and most especially to editor in chief Matt Winkler.

I benefited enormously from the editorial skills of my Bloomberg colleagues, who edited, reported, nudged, critiqued, and suggested. These include Bob Blau, Reg Gale, Bob Ivry, Norm Pearlstine, Shannon Pettypiece, Ellen Pollock, Anne Reifenberg, Marybeth Sandell, Bob Simison, Josh Tyrangiel, Mike Waldholz, and Ken Wells. I owe special thanks to my colleague Chuck Babcock, whose investigative skills I leaned on so heavily in sorting through the piles of complex documents. And to Reto Gregori, who makes everything happen, everywhere, all the time.

Thanks to all my wonderful friends, family, and colleagues who read, commented on, and corrected my manuscript: Sandra Mims Rowe, John Carroll, Nikhil Deogun, Doug Blackmon, Chuck Camp, Rebecca Blumenstein, Sharon Luckerman, Sidney Rittenberg, Joan Maxwell, Abbe Fletman, Jane Hinkle, Dick and Barbara Epstein, Woody and Sandra Boyd, Charly Dickerson and Mardean Moglein, Fred and Gail Laudeman, Bill Laudeman, Dick Laudeman, Charles Laudeman, Rita Brown, Margo and Glenn Lindahl, and Miles Lindahl. Special thanks to Jane Lindahl, whose editorial assistance got me through; to my sister Alix Bennett, who always gets me through, and her daughters, Aly and Greylin; and to my mother, my brother Peter, and my sister Kathryn.

All of the doctors involved in Terence’s care were amazingly thoughtful and generous with their time and insights as I reconstructed their roles
in the journey. Thanks to Ronald Bukowski, Keith Flaherty, P. Holbrook Howard, Eric Goren, Allen Gown, Scott Pierce, and Craig Turner.

This wouldn’t have been a book at all without Amanda Urban, my wonderful agent; Kate Medina at Random House, who is the kind of editor that hardly exists anymore; and Lindsey Schwoeri, who is becoming that kind of editor too.

Then there’s Don, and our improbably wonderful next chapter. And of course Terry and Georgia, who have always been the reason for everything, for both me and their dad.

Much of the medical and cost material first appeared in articles in Bloomberg News and in
Businessweek
on March 4, 2010. These articles can be found here: