A Lucky Life Interrupted (12 page)

Selectively I reentered the public arena, interviewing my old friend Jane Pauley on her new book about the choices baby boomers can make for the back third of their lives. We first met when she was the
Today Show
ingénue in the midseventies. Now here she is, a kind of youthful grande dame of boomers, still slyly witty.

Jane told the audience, “Baby boomers are often misunderstood. We didn't invent sex, drugs, and rock and roll, but we took it to scale.”

My schedule was carefully calibrated so I could be home by 8:00
P.M.
or so. Some evenings were harder to leave than others.

The National Board of Review is a New York organization of film critics, academicians, publicists, and others in the entertainment business who know how to attract attention: put on an award show leading up to the Academy Awards. This year my longtime friend George Stevens, Jr., son of the late legendary director, was being honored for establishing the American Film Institute, producing and directing his own films, and presiding over the Kennedy Center Honors. I was privileged to pay tribute to George but I knew I'd have to leave shortly after. It was not easy. The room was in a giddy mood, with Meryl Streep and Emma Thompson
lighting up the festivities with wicked takes on Walt Disney and women in high heels.

Bruce Dern stopped by to ask Meredith if she was still running marathons. Leonardo DiCaprio and Martin Scorsese did a comic riff. Steve McQueen, the director of
12 Years a Slave
, was honored and gave a heartfelt speech.

Or so I read the next day. I was home in bed by 8:45, a long way from my early days in New York, when Jane Pauley would joke I stayed out half the night because I was afraid of the dark.

Just as I was beginning to plot a return to almost normal, during the summer months back pain made a return visit. Persistent and more aggravating than debilitating, it again became a constant companion, a reminder that maybe my track to recovery had more detours than I had expected.

An MRI was scheduled while I was negotiating an interview with Greg Mortenson, his first since
60 Minutes
raised serious questions about his phenomenal bestseller,
Three Cups of Tea
, an inspirational account of building schools for girls in Afghanistan. There were also allegations of financial abuses and exaggerated claims of success. Mortenson was forced to resign from his foundation, pay back a million dollars, and rethink his life.

Since I knew Greg, his family, his work, and his accusers, I was in a unique position to conduct the first interview with him since the scandal broke. I warned him and his friends it would not be softball. It was not, and he rose to the occasion, admitting that he made mistakes, that he apologized to staff members who early on raised flags about the abuses. He also thanked Steve Kroft of
60 Minutes
and author-mountaineer Jon Krakauer, who first raised the issues, saying they probably saved his life because he was forced to concentrate on his health, including a serious cardiac condition.

Greg, the son of Lutheran missionaries, was the classic victim of that ancient Greek disease hubris. He now recognizes that and wants only to return to building schools and educating young Afghan women, leaving the foundation and fund-raising in the hands of others. He was grateful for the direct questions and the opportunity to begin anew. I reminded him America is a land of redemption if you admit your mistakes. He is a young man with a big heart and a determination to change the lives of young women in one of the most gender-hostile places on earth, northern Afghanistan. He's now back at it.

Once the Mortenson interview was out of the way I appeared for my MRI, which lasted about an hour. I had no sense of foreboding, which was a routine Brokaw approach. “Everything will be just fine.”

Wrong.

I had several compression factures along my spine, including an ugly one at a location called T12, in the midback area. Strung together, they were like an alarm system, but what were they signaling? Had the myeloma flared up? Were my bones more fragile than we thought? Did I imprudently lift objects that were too heavy?

Most important, why hadn't the physician in charge of my physical rehabilitation picked up on the developing fractures earlier? Perhaps my threshold for pain was misleading. When I said my pain level was a two-three on a scale of ten, would others have identified the same pain as a five-six?

On every visit from September through December I acknowledged pain, but never at an acute level. Nonetheless, its persistence should have prompted a hands-on physical run down my spine to determine if there were sensitive areas. That did not happen, for whatever reason.

The Sloan specialist in charge of structural issues was a forty-three-year-old with a big résumé, a brusque style, and apparently not much interest in face-to-face consultation, for I saw him only twice from September to January. He was another reminder of the importance of becoming proactive in your treatment.

At the same time I was losing height. Through my
fifties I was an even six feet and then dropped down to five eleven. Now I was aware of standing next to old friends and feeling much shorter than in earlier encounters. In fact, I was. I measured five feet nine, just barely. That was alarming. Was I becoming a man shrunken by disease and an unstable spine? Good god, what next?

What next was a procedure called kyphoplasty, in which the patient is under general anesthesia while neurosurgeons or specially trained radiologists shore up the fractures with cement injected through a needle. I felt like a pothole on the highway of life.

There was some discussion of bracing the T12 fracture with a rod and screws but in a quick survey of other specialists arranged by Jennifer, the consensus was “stay away from that kind of invasion.”

In the pre-op discussion I was startled to hear the radiologist say that if they had detected these fractures in November, say, he could have cemented them in their infancy, which would have been preferable.

I had grown up with a father for whom pain was a personal burden, not to be shared with others. During his severe back injuries he'd come home at the end of a long workday, strip off his shirt, make some iced tea, and sit in a straight-back chair, staring blankly at the far wall, never whining. I was never that stoic but I did inherit some of his attitude.

Two memories: I severely wrenched my left ankle when it was caught on a sagebrush stem as we rushed by in an ATV during Montana hunting season. On the advice of a hunting companion, a brother-in-law who is an ob-gyn, I iced it that night, laced up my boot extra-tight the next day, and hunted again. By the day after that the swelling was alarming and Dr. Jennifer insisted I go to the emergency room, which I did, reluctantly. X rays showed I had snapped my distal left fibula, the slender bone leading to the heel.

As Jennifer tartly reminded me, if I were going to have a baby, listen to the beloved ob-gyn brother-in-law, but severe ankle pain required a different kind of attention.

In our physician-intense clan, that is now part of the family lore.

The other memory is of a ring finger jammed during a Sunday softball game. It hurt but I thought I could play on, especially after two teammates, one a veterinarian and the other a psychiatrist, examined it and tried to pop it back in place. After the game, in rural Connecticut, a local physician looked at it and said, “Get to the Hospital for Special Surgery in New York right away. It is all but destroyed.” And so it was. After a long microsurgery and an overnight stay in the hospital I had a new, much more expensive finger, with or without a ring.

The veterinarian and the psychiatrist decided not to open a digital repair practice.

“Tom Brokaw, two six four oh.” On the morning of the kyphoplasty I had another of my Sloan immigrant nation moments. An attendant in the operating theater had a distinctive accent and so I asked about her origins. “Russia,” she said, smiling. “I lived all over Russia, went to medical school there, and then came here and went to medical school again.” With that I went under, awakening two hours later to the radiologist reporting it had all gone well. He was pleased he had managed to make repairs on that ugly T12 fracture.

I walked out under my own power and with Meredith at my side we headed for home for twenty-four hours of downtime and then a tempered physical routine.

The pain did not disappear. Three days after the kyphoplasty I was in more pain than expected, especially in the longitudinal muscles on either side of the spine. My spirits sagged and I gave in to some unexpected weeping brought on, I think, by drugs, the uncertainty of my recovery, and the absence of ANY relief from the omnipresence of cancer.

Some of the emotional spillover came from positive personal experiences, such as conversations with Jennifer in which she offered a spot-on analysis of what
should be done next in my case or a touching and yet hilarious description of brother Bill's latest eruption at his assisted living facility. I'd hang up, still laughing but also weepy with pride in all that she'd become.

Her nickname among friends at medical school was “Bombs-Away Brokaw” for her take-no-prisoners style when it came to ethical issues, tough medical decisions, or personal behavior. Yet what she loved most about medicine was her ability to help people. She spent a year before medical school in the dangerous Pakistani border town of Peshawar, working with Afghan women refugees fleeing the Russian occupation of their country.

She went into the rudimentary camps, dressed in the wardrobe of a Muslim woman, and counseled women on fundamental issues of female health. Their instant response was so gratifying she decided she wanted to be a hands-on, help-right-now kind of doctor, so she began to think emergency room medicine instead of infectious diseases, which had been her first choice.

Jennifer's assistance in my case was one of the many unanticipated benefits. Shortly after my diagnosis I had a heightened awareness of what the diagnostic team did not tell me. During my first visit to Sloan a number of physicians and administrators stopped by to cheerily assure me I was in good hands and several said something to the effect of “You'll be back to your old form by spring.”

That was reassuring but overly optimistic. Jennifer was more realistic, counseling me that my old life would have to be shelved and that I would need to concentrate full-time on being a cancer patient. Even with her warning I was not prepared for the precipitous weight loss, the effect of compression fractures in my back, and the diminished muscle tone.

Meredith, who sat in on all of the meetings, correctly thinks the projection of what lies ahead in a cancer case is a combination of physicians enlisting the patient in a best-case scenario and the patients not fully comprehending the pernicious effect of cancer on their physical, mental, and emotional makeup.

I quickly learned multiple myeloma would dictate the terms of my life, from physical fitness to summer schedules to appetite to energy to appreciation of my surroundings.

Two years ago we moved from our large, two-story apartment into a pied-à-terre, a much smaller place but all we need to nest in our neighborhood. Meredith pulled it all together in a fashion reflecting our life divided between New York and the West. Evocative western landscapes, rare Bodmer prints, and a collection of equine art showing off horses on the run and at rest, all framing elongated windows looking over Central Park and the Upper East Side.

Until MM struck I loved to sit in front of a fire in the living room, a drink in hand and a history book off the shelves, absorbed by the comfort of the surroundings. Now when I moved into that room the art, books, and fireplace became minor characters on the stage of a life dominated by the pain or anxiety of myeloma. Cancer becomes the scrim through which all of life is viewed.

I hoped that as time passed I would be able to raise the cancer shade and allow more light into my daily life. Until then it is CANCER EVERY WAKING MOMENT and the realization that it will be with me until the end, by whatever means.

It is this uncompromising reality that should motivate every cancer patient, and patients afflicted with any kind of complicated condition, to constantly ask, “Is this the right approach? Am I making the progress expected?” Most important, are all the parts of my treatment team working together? On big decisions of consequence, are they figuratively or literally at the table at the same time or on the same computer screen?

There came a moment when I decided that beginning with Dr. Landau I was in the hands of gifted individual physicians. All the same, communication between them was spotty or absent altogether at some critical moments.

Were we being sufficiently aggressive? Why weren't
all members of the team present for big decisions, either online or on the telephone or in the room? I was especially unhappy with that physician supposedly in charge of my structural issues. Following kyphoplasty he remained missing in action. Without seeing me in person he sent to a Sloan physical therapist a chart showing the devices I would need for everyday activity, including a walker, an elaborate plastic sleeve for pulling on socks, and detailed instructions on how to exit a car. I was prepared for changes in my life but this seemed over the top, and the radiologist who performed the procedure agreed. “Just use your head,” he said. “Don't do anything radical and you should be fine.”

He did warn me against any activity that would torque the spine, such as golf, horseback riding, shooting, or muscular fly casting. As a Jersey boy he had no appreciation of the difference between casting for a 3-pound bonefish and going to sea for a 150-pound marlin, so I sent videos of bonefishing.

I laughed when he told me he tried to duplicate the motions with a cheap spinning rod in his backyard.

What was not a laughing matter was my growing discomfort with the lack of shared dialogue in my treatment. With the exception of the MIA physical rehab physician, all the doctors were individually attentive, but rarely did I feel they were wearing the same team colors.
Immodestly, I knew I was a high-profile patient, but I was determined to have a low-profile demeanor. Through living in a family of physicians, my experience on the Mayo board, and reporting three healthcare documentaries, I knew the daily pressure on doctors. In complicated cases, it seems to me that the patient-team relationship should be seamless and all-inclusive.