A Lucky Life Interrupted (13 page)

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. Poor 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.

We were closing fast and I wanted to say something cheerful, but as we passed I realized I couldn't tell whether the shrunken figure was a man or a woman. I tried to make eye contact but he or she was staring blankly at the passing wall, and then was gone.

I am seldom at a loss for words, but no comments in passing would be worthy.

Cancer is such a vicious disease that it can rob us of even small moments of humanity. Whatever self-pity was within me drained away. I swallowed hard, teared up, and leaned against the wall for a moment as I made my way to the Velcade start, grateful that my prognosis seemed to be better than my ghostly corridor companion's.

These cancer-patient-to-cancer-patient encounters are not unusual. A contemporary, Bill Theodore, was in treatment for lung cancer, getting his chemo through a port in his chest that allowed him to wander the hospital
corridors, pushing his IV stand along. He paused to peer into a room where a much younger patient was working at a computer. The young man was gaunt, pale as an albino, and hairless. Bill heard his inner voice say, “Bill, at least you've had a life.”

With the addition of Velcade to my drug diet I was scheduled to get four subcutaneous injections, one a week for a month along with my twice-a-day Revlimid dosage. It is the pharmaceutical equivalent of chemotherapy carpet bombing. Here, we hope, they are life-giving, not -taking.

The weekly Velcade injection put me back in the hands of the real worker bees of the healthcare system, the nurses. They swept into my cubicle in pairs—the Jesuit-educated daughter of a New York fireman and the young Iowan who was supporting her husband's hope of making it as a stand-up comic in New York; the expectant mother and the Long Island commuter; the willowy blonde training for the New York City Marathon.

We chatted about movies, kids, and nurse's training while they moved swiftly through the steps.

“Name and birthdate?”

“Tom Brokaw, two six four oh.”

One nurse would read the code off the prescription while the other checked the match on an electronic monitor.

“Where this time, Mr. Brokaw? Abdomen?”

Yes, that seems to be working. Earlier in the day I would silently offer the veins on my left forearm for the blood extraction and testing that would determine if the Velcade could go forward.

Following kyphoplasty I felt the need for a more vigorous rehabilitation regimen, so I transferred to the Hospital for Special Surgery Sports Rehabilitation and Performance Center, internationally known for its work with world-class athletes and wannabes like me.

Polly de Mille and Rob DiGiacomo soon had me walking in a pool against an activated current, balancing on an electronic plate to determine my equilibrium, standing on a single leg to strengthen balance and muscle mass. They sent me home with instructions on how to advance my fitness on yoga mats and balance boards. I welcomed their systematic, sports-oriented approach and soon began to feel there was a chance of returning to old form.

Gratefully, Velcade seemed to work quickly. Back pain was reduced dramatically, no side effects appeared after two doses, and Meredith and I were able to join friends on Virgin Gorda, in the sunny Caribbean.

No one deserved that more than Meredith, who loves the sunshine of tropical climes. While she swam daily in the surf I waded in the pool, frustrated that my kyphoplasty prohibited one of my favorite activities, saltwater
swimming. All the specialists agreed the healing had to advance before I could expose the spine to the twists required for effective stroking.