The Cost of Hope (13 page)

As for money, Dr. Pierce is more aware than most of the strange conflicts that insurance and Medicare impose on doctors like him. The reason he is in a smaller office now is because of a 2005 change in the way Medicare reimburses doctors for chemotherapy drugs. Oncologists make much of their income essentially “selling” chemotherapy drugs to patients, with Medicare paying the doctors higher prices than what it costs the doctors to buy the drugs they are administering. Back in 2005, Medicare cut the amount it reimbursed. Many doctors switched to prescribing drugs that would earn them more money.

Did that affect the drugs he prescribed?

“The physician’s cash cow is chemotherapy,” he says. “You really have to be ethical.” It cut into his income and he downsized his office.

Dr. Pierce is also more aware than most of what insurance coverage—or the lack of it—means to patients.

His practice is in the relatively well-off university town of Lexington. Yet like all doctors and hospitals in Lexington and Louisville, his office is a magnet for patients from all over the region, including the desperately poor Appalachian eastern part of the state. He muses about a recent patient, a woman recovering from breast cancer surgery. There are two drugs she can take to reduce the risk of her cancer returning. One is an aromatase inhibitor, a relatively new kind of enzyme blocker that will cost three hundred dollars a month. The other is tamoxifen, an older
drug that Dr. Pierce says she can get at Wal-Mart for three dollars. The more expensive drug is, in Dr. Pierce’s estimation, about 20 percent more effective. Four thousand dollars a year. Twenty percent greater chance of keeping a cancer at bay. She doesn’t—can’t?—do it.

What makes me think curing Terence’s cancer is my responsibility?

What makes me think I can find things the doctors can’t? It’s not just hubris, I tell myself. I’m not completely crazy. I have seen other people—one a dear friend, the other a longtime colleague—both thread the needle of despair and almost certain death and emerge on the other side with a cure. My friend was snatched from dying of AIDS by a chance introduction to a doctor who prescribed an experimental antiviral cocktail. The colleague beat leukemia with a cutting-edge bone marrow transplant. Both were told they were at the end of their lives. Both arrived at their cures only through mighty research, bravery, and luck.

I’m smart, I’m strong, I’m brave, I tell myself. If I try hard enough, I can save Terence too.

But how?

In search of the answer, I become part of a cancer community.

Terence always maintained that Americans are joiners. For every imaginable human activity—and for some that defy imagination, he said—you will find a group with a president and a board of directors. They will have meetings and newsletters and agendas and jealousies and a certain amount of huffing that not all members are equally pulling their weight. Whatever these organizations
are, they will have T-shirts that say “WHATEVER—and proud of it!” And bumper stickers that say “I ♥ WHATEVER.”

One day in New York Terence set out to prove his theory. During the early 1990s, when Terry was a baby, and before Georgia entered our lives, we planned surprise excursions for each other—a day at a sculpture garden, a nighttime picnic at the Cloisters, chocolates and a bottle of champagne on the ice at Rockefeller Center.

“Dress up!” Terence commanded one Saturday morning. “Terry too.” He was already in a nice business suit. We were heading for the day’s surprise.

I put on a dress. Stockings. Heels. Even a little makeup. I shoe-horned three-year-old Terry into a nice polo shirt and slacks. We piled into the car. We headed east across Manhattan, over the Tri-borough Bridge, past LaGuardia Airport and off into Long Island. We drove for a long time. We can’t be heading for a theater, I thought. We wouldn’t be taking Terry to a theater. It must be some wonderful new restaurant Terence has discovered. Something ethnic. In a quaint neighborhood. We both like that. We exited the Long Island Expressway and began twisting through environs that had seen better days. We pulled into a parking lot behind a dingy VFW hall. Terence headed to a desk just inside the door and bought three ten-dollar tickets.

Inside the hall was a massive, three-state show of canaries.

Birds.

The hall was filled with rows of caged canaries. Bright yellow domestics. Fluffy white ones. Birds with amazing pointed crowns of feathers. Canaries that sat silent in their cages and ones that sang out across the room. There were Lancashires, Yorkshires, Spanish Timbrados. There were birds in onyx and brown, Venezuelan Black-Hooded Red Siskins, German Rollers, Persian Singers, Russian Singers. We roamed the hall, amazed at the variety.

Terence was smug. There, on the table just outside the main hall, was living proof of his theory: T-shirts. A newsletter. Bumper stickers. Canary Breeders Make Better Lovers.

Canary breeders. Kidney cancer. For everything there is a community. And, by the time Terence is diagnosed, there are not only bumper stickers and T-shirts. I find on my computer that there are listservs.

Kidney-Onc, the online gathering place for all things kidney cancer, was a pretty dreary place when I first briefly peeked into it back in Oregon in January 2001. Like all such forums, it is a kind of online conversation among dozens, sometimes hundreds, sometimes thousands of people. Yet even though people have been regularly gathering here to chat for nearly five years, few seem to have any more ideas, or options, than I do.

As I look back over the postings from the first two months of 2001, I see people asking questions about a German vaccine, about antiretroviral treatment, Shaklee vitamins, stem cell transplants, antioxidants, mushroom compounds, a tantalizing reference to “anti-VEGF” compounds, a man whose wife is about to be treated using the anti-AIDS drugs Viramune and Epivir, and one query about the acne drug Accutane as a possible cause of, or cure for, kidney cancer.

Fourteen months later, just after the dark lonely night when I pondered the cancer’s return, I am searching for what to do now. I log back into the community and find that something is different.

The group is still behaving as Terence said that any group will: There are leaders—RobinJoker, a knowledgeable and opinionated contributor, has posted information on the site 1,700 times since Terence’s operation. There are followers—“I’m new here” reads a common subject line. There is a group language: “Uncle
NED!” reads one post, which turns out to be excitement that the last scan has found “No Evidence of Disease.” There are hurt feelings. “Take me off this List NOW!” commands one person, upset that someone in the group has questioned her choice of treatment. There are even the T-shirts Terence predicts. They read “SCAN THIS” and are offered by one of the group’s members.

What is different about the Internet group in May 2002, from January 2001, is the range of treatments people are discussing—and subjecting themselves to. There are still lots of references to things that—even to my hopeful eyes—seem improbable. A post on the usefulness of cruciferous vegetables and a vegan diet. One on vitamin B
₁₂
. The report from someone whose disease has stabilized after a laetrile treatment at a clinic in Mexico.

Now, however, there is also chatter about clinical trials of a whole variety of oddly named compounds.

Some of these trials must have been going on all along. Suddenly the conversation is getting louder.

With the benefit of hindsight, it is easy to pick out the proper pathway from the clutter. Several patients talk about a trial of CCI-779 that they are beginning; that drug later will become Pfizer’s Torisel, used against difficult kidney cancers that respond to nothing else. There is chatter about bevacizumab, which will become Genentech’s Avastin, which Terence will eventually use on trial.

Yet in 2002 they are just part of the stew. They don’t stand out. Avastin bumps up against cryoablation—freezing the kidney cancer in place using radiation. Torisel is discussed right next to stem cell transplants. Patients on the listserv are being treated with radiation. Thalidomide. Interferon. Alone. In combination. In high doses, in low doses. In trials. In offices. In hospitals. People are taking drugs that work against one cancer—Iressa, Tarceva—and trying it against kidney cancer too. Patients swap doctors’
names like trading cards. We compare hospitals. Where should we go? Whom can we trust? We all pore over the list. Is this doctor for me? Does this drug show promise? Should I try it? Should I switch what I am doing? Can I thread the needle? Can I push the bell curve?

How much money are people spending on this chase? It’s hard to tell, although the topic is never far from people’s minds. There are endless online discussions of insurance coverage and Medicare rules. One man asks the group for help: Should he spend $350,000 to enroll his sister in a trial of stem cell transplants in Seattle? One talks about trying to talk his insurance company into covering $2,500 a week for the same kind of IL-2 treatments Terence is getting. One asks the list for help figuring out how to import Anzemet that his aunt is taking for nausea now that her insurance company has stopped covering the hundred-dollar-per-tablet cost.

A man in Pakistan reports on his dad’s treatment using a Texas doctor’s protocol: “If this may be of any interest to you guys I just wanted to report and ‘accurately’ that the four drug combination cost of interferon, thalidomide, capecitabine and Coumadin is coming to Rupees 73000 total per month ie in Dollars 1200. And this is the total cost.” He goes on. “These meds are all being imported to Pakistan and it is very interesting to note that obviously these meds are not as expensive to manufacture as they are being sold in the United States.” He asks: “I wonder what’s the profit margin???”

The group on the Internet is in general very friendly. I email one man and he writes back immediately with detailed information. I ask a couple about a program in Texas. They respond offering me their guest room. Amid all the noise, though, one name stands out for me, because the woman who calls herself lmodrngrrl—who turns out to be a modern furniture dealer named Laura Lear—is writing about her boyfriend, who has
collecting duct cancer! What’s more, as I scroll through the history of her postings I discover that they have settled on Gleevec as a treatment for him—the very Gleevec that I had been looking at back in Oregon. And it seems to be working! I find a message she posted in February 2002, after Robert had begun taking the drug:

Excited, I contact her, and on May 12, 2002, I post a message myself for the group.

Looking back at that post today, I am struck by two things. One is how quickly I adopt the coloration of the group, with the little abbreviation-studded biographical tag at the end. The second is how startling the date is in retrospect. The date of the posting—May 12, 2002—is only six days after our son’s frightened phone call to me. I’ve gone into hyperdrive.

Seven years later when I pore over Dr. Pierce’s medical records from those days, I can re-create my own frenetic path:

Over the next five months of notes, there are references to a request to look into angiogenesis inhibitors. Another request for a “battery of tests” at a specialized lab in Illinois, and then later the results of those tests. The tests show that Terence’s tumor is positive for the protein HER2/neu, which makes breast cancers more aggressive. That makes him a candidate for the breast cancer drug Herceptin. I seek, and get, approval from the insurance company to try that drug too.

• • •

Behind the scenes something is happening that I—and perhaps most of the people in the Internet group and even their doctors—won’t fully understand for years to come.

For decades all cancer was treated pretty much the same way: Cut it out. Bombard it with chemicals—chemotherapy—or try to burn it with radiation.

For kidney cancer, IL-2 was a new pathway, working off the idea that the body’s immune system could be harnessed to help fight the cancer. Now something new is happening, as a twenty-year-old concept begins to be tested in earnest. Tumors depend on angiogenesis, the process by which they build blood vessels to feed themselves and grow. Cut off their blood supply and the tumors will shrink and die.