A Lucky Life Interrupted (4 page)

My South Dakota friends were mostly Republicans but they were eager to meet Kerrey, a Democrat, not because of his politics but because of his Vietnam heroism. As a Navy SEAL he earned the Medal of Honor and was gravely wounded, eventually losing a leg below the knee to amputation. He was an enthusiastic hunter on the tough terrain, not at all handicapped by his right-leg prosthesis, but he wasn't much of a shot. No one commented on the misses and we all cheered when, on the final day, at the final hour, he knocked down one of the big birds.

As it happened, the following week I was scheduled to visit Walter Reed, and the chief of orthopedic surgery called to say he had a tough one. He would be amputating the leg of a young soldier early on the morning of my visit, and the young man insisted on meeting me. The doctor warned me that his patient would be heavily sedated and normally he would allow no visitors, but the young man was angrily insistent. So I went to his bedside, squeezed his hand, introduced myself, and said, “I've just spent a weekend hunting with a Navy SEAL who lost a leg in Vietnam and I couldn't keep up with him across the fields and over the fences, so there's a life out there for you. Thank you for this sacrifice and for serving our country.” He gave me a small smile through his sedated haze and squeezed my hand back.

Struggling not to choke up, I left his room and the doctor said, “That was perfect. I have some other patients for you to see.” So I made the rounds and then called Kerrey to thank him for getting me through the morning with the story of his life.

There was a pause and then Kerrey, lowering his voice, said, “You didn't tell them I couldn't hit my ass hunting, did you?”

There were other reminders from the new war zones. Leaving Baghdad for a flight home a few years ago, I
caught a hop on a medivac plane to Germany. The attendant in the cargo hold, which was filled with wounded vets in various stages of difficulty, asked if I would pose for some pictures.

Of course. We chatted awhile and I asked if she had a family.

Yes, back home in North Carolina. Your husband taking care of the kids? No, he's up in the cockpit flying this plane. The kids are with their grandparents.

No whining, no “this is not fair.” She and her husband had volunteered for the reserves and knew this day might come. They were part of the just 1 percent of our population to put on uniforms and fight our wars. Nothing is asked of the rest of us.

It is manifestly not right, and for all of the attention returning veterans are now getting, the fundamental issue remains: When we go to war, spending what politicians like to call “our precious blood and treasure,” most of us stay home and are not required to change our lives, spending our treasure on ourselves.

As I discovered during my Mayo stay, there is more than some similarity between those who wear military uniforms and those who staff our big healthcare centers. Healthcare workers are not being shot at, obviously, but they are exposed to dangerous diseases; they lead unconventional, all-hours lives; they are mission-oriented
and they work in a hierarchical environment, with the physicians on top and orderlies doing the grunt work at the bottom.

Twice a day I met with the medical team for a briefing on what came next: chemotherapy in a pill called Revlimid, developed from thalidomide, the drug banned in the sixties when it was found to cause birth defects in women being treated for morning sickness. For someone who had been taking only a baby aspirin and a cholesterol drug, my life was about to be divided by two pillboxes, one morning and one night. Within a few weeks I was taking seventeen pills a day.

Drug therapy for MM is advancing rapidly. There are two primary chemo treatments, and I was told that they were being constantly reengineered to make them even more effective. They have their work cut out: MM is a complex cancer, as all are, but this one has a daunting entry in any medical reference book. Myeloma as a description has its origins with the Greek medical genius Hippocrates, who did the earliest known work on cancer, which he called
karkinoma
(carcinoma) because the tumors often resembled a crab,
karkinos
in ancient Greek.

In modern descriptions, the condition is complex and treacherous: Plasma cells in the bone marrow become
malignant and produce tumors, causing destruction of the bone and resulting in pathologic fracture and pain. A secretory form of the disease is characterized by the presence of Bence-Jones protein, a monoclonal immunoglobulin, which can cause anemia and kidney disease (and which explains why I am spending so much time peeing in a bottle for testing).

Somehow, and for reasons no one knows, my plasma cells went nuts and decided to attack my system, probably starting in the right pelvis area. I did immediately experience the bone destruction with the two compression fractures and more to come, but acute anemia and kidney issues were not on the screen. It was not a light pass, however. Jennifer later said, “Dad, your blood was sixty percent involved with myeloma.”

Meredith was at my side throughout, emotionally attentive to me, all business with the medical staff and in the cockpit of the Brokaw command center, making arrangements for what was next.

At a dinner on our fiftieth wedding anniversary I said of Meredith, “I can have a terrible day and a restless night but when I awake in the morning and turn to her, she gives off that beatific smile and I know everything is going to be okay.” I've been in awe of her organizational skills and cool efficiency since we first met, as sophomores in high school. Now here she was, more than half
a century later, clicking off the names of the drugs and the dosages from memory by the second day, double-checking the refill compartments to be sure I was getting what I needed when I needed it.

Jennifer arrived from San Francisco and immediately joined the Mayo team as daughter, physician, and interpreter of medical terminology. As she leaned over Dr. Gertz's shoulder, reading my charts off the computer screen, I thought of how proud Meredith's father would have been.

When Jennifer was twelve or so and visiting her grandparents in South Dakota her grandfather, Merritt Auld, known to all as “Doc,” said to her one morning, “C'mon, you're going to do rounds with me.” At the end of their hospital visit he said, “Jennifer, you're our next doctor,” one of eight in the family. He read her perfectly. Insatiably curious about the human body, with a built-in compassion gene and a take-charge personality, she is wired for medicine. She was just the team member I would need going forward.

Here in Rochester she fit right in, and I was learning a lesson in cancer care. It is important to have someone you trust to help manage the case. Jennifer knew what questions to ask, how to interpret the lingo, where to go for the latest reliable information on this cancer. I now use her as a model for others who develop cancer. “Get
a Jennifer,” I say, “a physician who is not on the clinical staff, a friend, who can be your ombudsman.”

By the end of my Rochester stay Dr. Gertz had seen enough of Meredith and Jennifer to know he wasn't just handing me off to experts in New York. He was plainly impressed with Team Brokaw, telling me, “You're in better shape than most patients; you've got these two and they'll be very helpful.”

These are the trials that test a family and define the character of the individual members. Having lived with four women—Meredith, Jennifer, Sarah, and our middle daughter, Andrea—for more than forty years now, I am endlessly intrigued by their distinctive strengths, interests, and instincts. In the weeks ahead I would need the combine they represented as each played a distinctive role.

First, however, the Brokaw pharmacy had to be opened and managed. Two daily doses of Revlimid, the chemotherapy pill, for four weeks, a break and then a resumption for two more cycles. Stool softeners for the expected constipation, an antifungus drug for my stomach, another for mouth sores, an aspirin, the cholesterol drug, vitamin supplements, dexamethasone (a steroid), and testosterone patches. OxyContin, the well-known pain reliever, at my discretion.

It is all very expensive. One Revlimid pill alone is
more than $500 and they're not easy to acquire. Only seven pharmacies in the country ship the powerful drug, and to become a customer requires a detailed background check and hospital authorization. Thanks to my General Electric healthcare plan for senior employees, my co-pay was just $15 per pill. What, I thought, does a farmer in Kansas do, or a small business owner in Kentucky, or any other multiple myeloma patient, to get on the list and pay for what appears to be, if not a breakthrough, at least a big step in the right direction?

With the Mayo team, we had decided my case would be transferred to Memorial Sloan Kettering, the world-famous cancer treatment center in New York. Dr. Gertz was very high on a young Sloan specialist who was compiling an impressive record in treating myeloma. Her name is Heather Landau, and she is a stylish, intense New Yorker. MM is her specialty. For the initial meeting she brought in a Sloan physician who concentrates on pain management. Dr. Roma Tickoo wears a white smock with the phrase “Pain and Palliative Care” in bold letters.

Given her unusual name I decided to just call her “Dr. Pain” but she laughingly rejected that, saying, “No, I want to be Dr. Palliative,” making it clear that relief from the pain in my deteriorating bones was a high priority.

Dr. Landau agreed. “We think of pain pills as vitamin
P,” she said. “We've had no cases of addiction and you'll want to be comfortable.”

Other Sloan physicians and executives dropped by during the initial consultation, just to say hello and offer their assurance I was in good hands and would be doing much better by spring. That was comforting but in fact I didn't yet know all the steps to spring.

One of the visitors was a Dartmouth medical school classmate and very close friend of our daughter Jennifer and her MD husband, radiologist Allen Fry. Pete Allen, a former U.S. Army surgeon in Iraq and former Harvard football player, is now a top cancer surgeon at Sloan. It gave me an emotional jolt just seeing Pete, an offensive lineman for the Crimson, fill out his operating room scrubs. What he faces every day, the skills he's developed while retaining his droll sense of humor and his affection for Jen and Allen, add up to the qualities you want in every extended family member. These are people you'd like to keep around forever.

In shifting from Mayo in Minnesota to Sloan in New York, it helped to know the cultural geography of both places. In Rochester many of the accents have a faint hint of the dialogue from the film
Fargo
, and the Mayo drivers are often big, beefy guys who grew up on nearby dairy farms until that business became too difficult. One of my Mayo overnight nurses was a high-energy, athletic
young woman who commuted an hour each way from a small town in Iowa to work weekends. When I asked why, she explained that her husband was the girls' basketball coach back home, the Iowa equivalent of being in the Main Street spotlight night and day. She wanted to be there for him during the week, when, in addition to all his other pressures, he taught fourth grade, and this year the class included their son and all his pals.

We talked about the prospects for the Green Devils and life in Osage, their hometown. She was surprised that I knew it was a county seat—from my days of working in nearby rock quarries during the summer of 1957. It was hard work, I explained, but I made the same commute to Rochester on weekends to court a nurse who wisely was more interested in her career than in my attention.

I think of my new Osage friend often—her nursing skills and, more important, the commitment she and her husband have to their marriage, their family, and their community. Those same core values are on display at Sloan, but they come with different accents and in a different setting. Sloan Kettering is a cancer treatment center exclusively, so I always wonder as I pass patients, What's going on in
their
bodies?

Is that cancer curable or just treatable?

Memorial Sloan Kettering is on the Upper East Side
of New York, a few blocks from the East River, and it is an urban intersection of modern medicine and technology, all directed at the treatment of cancer in its many forms. Walking the corridors of MSK, as Sloan is known to regulars, from one test to another, can be an emotional experience. A young mother, leaning over a gurney, whispering to a bald child, while Dad sits stoically nearby. I thought of our grandchildren and how devastating it would be to have one of them, bald and frightened, on that gurney. The emotional and financial turmoil, the complete immersion of the family in the struggle to find relief, the utter unfairness of it all, adds up to a price no one should have to pay.

The MSK staff reflects the immigrant roots of New York. A Haitian technician takes my blood. My pain specialist is from India. A native of the Dominican Republic checks my blood pressure and other vital signs. An Argentine MD and her South Korean—American associate survey my veins for a possible stem cell harvest, the extraction of healthy blood to replace the bad cells. An Iranian American physician, trained originally in Tehran, removes some stitches. As the Argentina-born physician put it, “New York is a melting pot; Sloan Kettering is a puree.”

Quickly I was into the attack on those renegade plasma cells with the daily drug cocktail.

It is a complex procedure, what to take when, and Meredith instantly became my accountant, enforcer, and quick-study expert, taking detailed notes as the physicians worked their way through the daily routine of a multiple myeloma patient. Dr. Landau outlined her game plan: a twice-daily diet of Revlimid as the primary chemo drug, bone strengtheners, testosterone supplements, calcium, vitamins, and, she said, “We'll be looking at a stem cell transplant sometime around December. You'll lose your hair. Is that a problem?” No, but others had warned me that stem cell transplants can be arduous because they require a protracted hospital and home stay in germ-free conditions.