A Lucky Life Interrupted

by Tom Brokaw

  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.

  By then I had established a regular telephone relationship with Dr. Ken Anderson, of Dana-Farber at Harvard, a seminal figure in developing and applying the new drug treatments working so well in MM cases. He had been Geraldine Ferraro’s doctor throughout, his care no doubt helping her to live much longer than the usual MM life span at the time. He has devoted forty years of his career to what he calls “this nasty disease.” From patients and experts alike, any mention of his name would elicit strong encomiums: “He’s the best, and such a nice guy.”

  With daughter Jennifer on a conference call we reviewed my case
and I asked if Ken could join the team. By then I knew he was familiar with Dr. Landau and saw her as a bright young oncologist with a growing reputation in the treatment of MM. He said he would be honored.

  I was flattered but said once he got to know me he’d get over the “honored” part.

  When I shared the details of our conversation with Dr. Landau she was on board immediately. Anderson wanted to go to heavier artillery, adding a drug called Velcade. As he said, “Some hospitals save Velcade for the worst-case scenario. I believe if you have myeloma, it is the worst case.”

  Dr. Landau worried some about a side effect, neuropathy, in which the patient gets a burning sensation in the feet or tingling in the hands. I decided I could handle some of that if it would advance the larger goal of getting MM under control. Neuropathy did show up but it was a minor case of numbness on the soles of my feet, affecting my gait some but not enough to be a distraction. It was another of the instructive passages in this journey as a patient faced with big decisions in the treatment of a life-threatening disease.

  Whatever the disease, patients have to be their own advocates and, if possible, have access to a physician not on the primary team, someone who can translate medical language and ask the questions only another physician would know. This is a reality the medical profession is slowly beginning to recognize, but institutional pride and a long history of not interfering or commenting on another physician’s approach is deeply rooted.

  The role of the patient is equally freighted with traditional attitudes and changing expectations. Even with the advantages of a high personal profile, a family physician at my side, personal relationships with Sloan trustees, and a wide range of solicited and unsolicited opinions about whether to make changes, the decision to bring in another doctor is not just another button on speed dial. Adding Ken Anderson of Dana-Farber to the team did not go unnoticed at the highest echelons of Sloan, but no one questioned my judgment or right to make the call. I described him as my offensive coordinator, with Dr. Landau the play-calling quarterback, the physician who would move the ball down the field. I needed both and each had a critical role.

  Medicine is a science but it is not physics, in which so many of the laws are certain. Medical science has its own dynamic and the human body is constantly presenting new challenges to whatever attempts are made to take control of it on our terms. Three physicians at the top of their profession may look at a complicated problem through three different prisms. Which to trust?

  In dealing with the Soviet Union during the tense negotiations on reducing nuclear stockpiles, President Ronald Reagan liked to say, “Trust, but verify,” a mantra he quoted so often that Soviet leader Mikhail Gorbachev finally threw up his hands and said the Russian equivalent of “Enough already.”

  Patients with complicated life-altering or potentially life-ending conditions would do well to adopt the “trust, but verify” reminder.

  Once my condition became more widely known a number of people urged me to confer with Dr. Jerome Groopman, the Harvard Medical School professor who is also a gifted journalist, writing in The New Yorker with clarity and style about health and medical matters. I resisted, saying that he was a busy man and that our shared profession of journalism didn’t give me license to disrupt his life. Maureen Dowd, the New York Times columnist, was so persistent I thought she might have me kidnapped and delivered to him in the trunk of a car. Dr. Groopman had saved a member of her family with his treatment of a blood condition.

  So I called, and my earlier resistance suddenly seemed foolish. Even over the telephone he was avuncular. He was quick to praise Dr. Anderson and the treatment course under way. We talked as well about his guidebooks for patients, Your Medical Mind—How to Decide What Is Right for You and How Doctors Think.

  Together or separately they’re Baedekers for patients entering the realm of modern medicine and choices, often life and death choices. In Your Medical Mind Groopman and his coauthor, Pamela Hartzband, MD, who also happens to be his wife, cite contemporary research on the doctor-patient relationship, but the most telling stories are case studies.

  They recount the case of Julie, a smart, disciplined owner of an upscale art gallery who through self-examination and confirmation from oncologists discovered she had an aggressive form of breast cancer. She wanted the “best of the best” to treat her. A friend found the man and so she called to say, “I would really like to come in and talk to you about my situation and understand what the options are and what you recommend.”

  He was headed to a conference in Europe and wouldn’t be able to see her for a week but that did not diminish his self-confidence. “There’s really no need for a lot of discussion,” he said, “I know what is best for you. You’re going to get great care here.” He paused before adding, “I guarantee you’re going to love us.”

  Julie immediately thought, “I don’t know that I am going to love you.”

  The self-assured doctor, the Eros, if you will, went off to Europe and Julie looked for another specialist.

  When she shared her story with her gynecologist he was sympathetic, saying the original doctor did have a big reputation, but, as he put it, “There is no one best doctor. There are many in each field with deep experience, excellent clinical judgment, and strong communication skills.”

  Several of the gynecologist’s patients had great success with another oncologist and he arranged for Julie to see him. Julie did and liked him for his honesty and patience with her many questions. He was willing to talk about the risks and uncertainties. She decided he was the best choice and when THE BEST OF THE BEST returned from Europe she called to say she was going elsewhere. He cemented his reputation by responding, “Of course. He’s great. I’m great. Whatever.”

  As a case study in managing your own treatment choices there are several important elements on Julie’s side. As an art dealer she was accustomed to making tough decisions based on the merits of the subject, not just the reputation. Her gynecologist had in effect a clinical trial with the doctor she chose, having sent several patients to him with success. Most important, she didn’t blink. She didn’t love the first one. She made a decision on the merits, not on her emotions.

  How and why we pick a physician is getting more attention in the medical community from academic institutions and healthcare delivery systems, but the preferred method remains word of mouth. A relative, a friend, a family doctor, these personal connections remain the primary sources even with the vast universe of information now available in the digital age.

  In 2008 the Kaiser Family Foundation looked into this and discovered that only 14 percent of patients seeking a physician saw and used the plethora of material measuring the effectiveness of care, physician expertise, and hospital standards. The Kaiser study concluded that patients are far more likely to be much more aggressive about information when buying consumer goods, such as flat-screen TVs, a computer, refrigerator, or automobile.

  Younger healthcare consumers are beginning to change that. They don’t hesitate to check online for comparative studies, with one survey showing just over half of the young questioned relied on physician referral while 80 percent of those sixty-five and older still prefer the doctor-to-doctor method. Younger patients also tend to have a higher level of understanding of the complexities of modern medicine.

  Not surprisingly, in the vast new world of health insurance, the relationship of physicians to healthcare plans is important. The essential question: If it costs less, would you consider a narrower range of physician choices? A study of patients at four Minnesota clinics demonstrated that those buying their own insurance are overwhelmingly in favor of a smaller set of choices if it saves money. Workers with employer-provided plans were more concerned with the range of choices than the cost.

  Money has always played a significant role in determining the quality of healthcare and the health of individuals. As Jesse Jackson once said during a hospital workers’ strike in New York, “Rich got a plan for living. Poo
r got a plan for dying.” The educated class knows the value of good health to quality of life and is willing to pay for it. The poor are more likely to trap themselves in a culture of smoking, poor nutrition, obesity, drugs, and only sporadic attention from a physician. Now the question is, Will the Affordable Care Act or the other forms of healthcare financial plans not only pay for treatment but educate and inspire the previously uninsured to become more responsible for their personal habits?

  This cancer ordeal has reminded me again of the mental and physical dividends of good health. Every morning I awake longing for the days not so long ago when I would jump on my bike and go for a fast ride or jump in a cold mountain river for a bracing swim, walk rather than ride thirty blocks to the office. These were all habits I developed before I began making the big salaries.

  Now living with the daily reality of bone pain, fatigue, the easy onset of bronchial conditions to go with the war in my veins between the powerful drugs and the villain blood cells, I have to resist self-pity and also resist the temptation of going up and down the street, shouting at construction workers to stop smoking.

  I am tempted to tell them about my dad, Red, a hard-hat-wearing, lunch-bucket-carrying construction foreman who started smoking at age ten and didn’t stop until he was in his fifties. He died of a heart attack at age sixty-nine.

  —

  As I was beginning my Velcade regimen, trying to adjust to a longer recovery period I walked along a Sloan corridor in the bone-marrow section and saw coming toward me a gurney occupied by a frail, gray figure, bald and hooked up to a tangle of tubes, wires, and drip bags.