A Lucky Life Interrupted (7 page)

All of this attention reminded me of a conversation with a friend who had an aggressive form of breast cancer. I flashed back more than thirty years to a Sunday when I drove my new, fast car to the home of Marc and Maria Kusnetz in the Catskills. Marc and I were a team at NBC News, correspondent and producer, traveling the world to document the collapse of the Soviet Union, the release of Nelson Mandela in South Africa, and the contra wars in Central America. We had a professional and personal association as close and important as family, the white-bread boy from South Dakota and the wiry, kinetic hippie carryover from Queens and Columbia University. His wife had been battling breast cancer, and Marc and I had been involved in a frontal attack on all there was to know about the best treatment. Unfortunately, her cancer was advanced and she came from a family with a history of unhappy outcomes from breast cancer.

Following graduation from Columbia's esteemed journalism school Marc spent a year on the hippie trail of love, drugs, and adventure in India and the subcontinent before coming home and meeting Maria, a serene Italian American beauty, yin to his yang.

After giving their sons a spin through the mountain roads in my new car I invited just Maria to join me. We laughed hard and hung on as I accelerated through hairpin turns and tried to put her condition behind us. She
was in remission so I asked how it was going. I'll never forget how she stared out the window and said in a low, even voice. “Okay, I guess, but I know it's still there, the cancer. I can
feel
it.”

It was a time when cancer counselors were in a fuzzy, feel-good mode, urging patients to “imagine a little elf with a stiff brush, just scrubbing away those cancer cells.” Maria knew better. She didn't feel a brush. She felt cancer. We sat silently for a while and then drove on. She was right. Within a few months, she was gone.

I can still hear Maria's voice. Now I think more about the years I've had that Maria and other cancer victims were denied. With my diagnosis I quickly adopted a new attitude about age and years.

Seventy-three turned to seventy-four and neither seems like just another number to me any longer. As the birthday years climb, so does the cancer risk graph. George Johnson, a former reporter at
The New York Times
, wrote a widely praised book called
The Cancer Chronicles
, and followed it in the Sunday
Times
with an article entitled “Why Everyone Seems to Have Cancer.” It appeared five months into my case, a time during which I learned of three other friends with cancer, one of them a surrogate son in his midforties.

Johnson got to the heart of the matter quickly. While
cancer death rates are going down modestly, the death rates for the two other prominent killers—heart disease and stroke—have declined dramatically. From 1958 to 2011 death from heart disease dropped by 69 percent. Stroke death rates, down 79 percent. Cancer in the same period?

Off just 12 percent.

Why? In heart disease cases, Johnson points out, changes in diet, exercise, and drugs to control cholesterol have been enormously beneficial, and if they fail, there are the mechanical fixes: new valves or pacemakers, bypass surgery and stents.

Cancer death rates benefited from the crusade against smoking (a particularly lethal form for my generation; I've lost eleven friends or acquaintances to lung cancer), but after that, very few preventative measures to significantly reduce cancer have been successful.

Johnson describes cancer as “not so much a disease as a phenomenon, the result of a basic evolutionary compromise. As a body lives and grows, its cells are constantly dividing, copying their DNA—this vast genetic library—and bequeathing it to the daughter cells. They in turn pass it to their own progeny: copies of copies of copies. Along the way, errors inevitably occur. Some are caused by carcinogens but most are random misprints.”

Cell mutation is a biological wonder but it is not perfect.
Johnson describes how “every so often a certain combination will give an individual cell too much power. It begins to evolve independently of the rest of the body….It grows into a cancerous tumor.” He reminds us that age becomes the catalyst for cancer. “As people age their cells amass more potentially cancerous mutations. Given a long enough life, cancer will eventually kill you—unless you die first of something else.”

The statistics have a kind of cold, abstract place in our lives until they land in our bodies or affect someone close to us. In the months following my diagnosis I learned of a young friend, practically a son, with stomach cancer. Another young man close to one of our daughters with multiple myeloma. An NBC colleague, same condition. I heard that a former NBC colleague, almost exactly my age, was quietly battling an aggressive form of prostate cancer.

The strong connection between cancer and aging is evident every day in the obituary section of any newspaper. Well before MM became my constant companion I was a regular patron of those pages for the lessons learned from the celebrated and ordinary lives they chronicled.

Reading the obituaries took on a new dimension. Previously I had looked first to see what kind of life the deceased had led, especially if they were in what I called
the Greatest Generation, the men and women of World War II. Now I was more interested in age. Here's a guy who made it to eighty-five and died of prostate cancer. That's a full life. Whoops, here's another who died at seventy-two, his family said, of cancer-related causes.

In our family, that is too familiar, for we had begun to struggle with my middle brother's onset of dementia at the same time I was going through the multiple myeloma stages. Bill was seventy-one when something began to seem amiss. He had retired after mixed success in the restaurant and residential real estate business, and was living alone after three marriages and only episodically connected to our youngest brother, Mike, and me.

When my mother began to fail in California he made more trips from Denver to be with us, but there were unsettling signs. He'd miss a flight by three hours, tell the same stories from his U.S. Army days in Germany, and keep from us exactly where he was living and how. By the time of Mother's funeral back in South Dakota his conversations, memory, and elusiveness were noticeably more erratic. Dr. Jennifer said, “Bill needs help now. I'll fly to Denver, contrive some story, and get him to a gerontologist.”

I contacted some financial advisers to evaluate his net worth and budget for housing. Through her careful stewardship Mother left a tidy estate of almost $400,000,
and we elected to divide that between Bill and Mike, who had a comfortable retirement program from his long, satisfying career as a telephone systems installer and supervisor.

Bill had good reason to keep us from his apartment. He'd become a hoarder. The living space was impenetrable, stacked with unopened boxes of polo shirts, cross-country skis, books, DVDs, and family photos dating back to the early twentieth century. As an avid and skilled cook, he also had a restaurant's worth supply of cooking pots and other utensils.

One more American enterprise emerging from the reality of the population growing old: de-hoarders. A small band of retired schoolteachers, social workers, and moving van employees moved in and sweet-talked their way through Bill's resistance, all the while clearing out the floor-to-ceiling stuff he'd accumulated.

They helped him decide what was necessary for his new digs, a middle-income apartment in a gentrified early-twentieth-century neighborhood near downtown Denver. With the help of some friends and Mary, the smart, compassionate advocate we hired to look after Bill, he quickly made the place, which had two bedrooms, two baths, and an outside deck, into a homey nest.

During my visits he was eager to show off the living room, framed by an oaken dining table restored by our
father, an old-fashioned oaken dry sink that served as a bookcase, and a flat-screen television that had been sitting in its original box for six years. It all added up to a new life but it was one that Bill would never know, for his condition deteriorated rapidly. Several months before my MM diagnosis I flew to Denver to join Jennifer on a second round of geriatrician visits.

I let Bill drive a short distance to a favorite diner and it was unsettling. He stayed in his lane and drove slowly but went around the same block twice. We went shopping for an iPad but it was clear he could never master it. It was heartbreaking to watch him panic when the clerk asked for his birthdate as the beginning of a password.

He didn't have a clue.

Similarly, he didn't seem to fully understand why we were at the office of the doctor, Donald Murphy, a genial Notre Dame graduate and native of Casper, Wyoming. He chatted with Bill about the Denver restaurant business, all the while scanning his psychiatric and dementia screening results.

“Bill,” he asked, “what about some meds, some pills to help you with memory and stuff?”

“Nah, I don't believe in them,” Bill, always the family contrarian, answered quickly. “Besides, I didn't like that psychiatrist [who had examined Bill earlier].”

“Hey, I get it,” Dr. Murphy answered. “No pills.”

Dr. Murphy pulled me into another office and said, “We know what's going on here. It's a steep decline.”

I broke into tears. Bill was just two years younger than me but his life was light-years different. Broken marriages, failed business, a stubborn resistance to anyone who volunteered to help. Yet he was natively smart, a voracious reader and a public policy wonk. Earlier in his Denver stay I had introduced him to former governor Dick Lamm, and Lamm had said, “Bill actually knows about and cares about municipal transportation. And a lot of other issues under the radar.”

In the family he was famously stubborn and outspoken after a childhood of painful shyness. As one of his stepsons put it, “There is the way everyone agrees on and then there is Bill's way.”

We all worried that this stubbornness would make another move difficult, this one to an assisted living facility. Mary, the advocate, found a new facility in Lakewood, a well-organized three-floor home for seniors with the onset of dementia, the middle stage, and those who are deep, deep into the dreaded disease. It had all the perks of modern living: a coffee and snack bar, a well-appointed dining room, a small theater with a giant television screen, and small but comfortable apartments. The surrounding grounds were parklike, with recently planted trees and a lawn sloping down to a new development of suburban homes.

These facilities are a growth industry, with the number of deaths from Alzheimer's having increased 68 percent between the years 2000 and 2012. By 2025 the number of people age sixty-five and older with Alzheimer's is expected to climb another 40 percent, to more than seven million nationwide.

The stark numbers don't stop there. It is the sixth leading cause of death in the United States, the fifth leading cause of death for those sixty-five and older.

If a cure is not found, the cost of Alzheimer's is expected to soar to $1.2 trillion by 2050 from $203 billion in 2013. It will drive up the cost of the already overburdened Medicare and Medicaid by 500 percent in the same period.

When I visited Bill's prospective new home the lobby was filled with residents planning day excursions or summer bus trips to Mt. Rushmore, in South Dakota. One perky woman, about my age, gray-haired with a new permanent, said, “Say, you look familiar. Who are you?” I told her and she said, “Well, you have to come to my birthday party tomorrow. We're going to have fun.” I said, “Oh, I am so sorry, I have to leave today.” And then, plumbing for more information, I added, “You look so young. How old are you?” She shot me a stern look and said, “You think if I knew that I'd be in here?!?” And burst into laughter.

Bill could be happy here, I thought.

He moved without much complaining and it was another opportunity to clear out more of his accumulated stuff, including wine, cookware, and sporting goods equipment, most of which had not been used in a long time.

Dealing with dementia patients is a delicate dance for family members, caregivers, and the afflicted. It is one step compassion, two steps patience, three steps deception. After initial protests about discarding some personal belongings Bill quickly forgot he owned them, and by then they were out the door and on their way to the Salvation Army.

Earlier he gave up his car when Mary persuaded him it needed a complete inspection and then conspired with the dealer to load up the estimate of costs so it would be impractical for him to pay them. He reluctantly agreed to sell the car and relied instead on a livery service.

Bill's new home was part of a boom in assisted living facilities around the country, one more manifestation of our aging demographics. The staff was well trained and responsive to our inquiries and requests. He had a sunny one-bedroom apartment with a small kitchen. It was a good fit. It was also expensive. His housing, medical care, and association with the highly efficient Mary ran about $90,000 a year. We worked out a formula for Bill to pay his primary expenses from his inheritance and I
picked up some incidentals, relieved I was in a position to help immediately and when Bill's nest egg ran out.

What about those families with modest resources or none at all? Grandma goes in the back bedroom or in a warehouselike facility. It's now estimated that five million people are living with dementia in America, and unless there is medical relief soon that number will grow steadily. The Alzheimer's Association estimates that more than fifteen million family members and friends give more than seventeen and a half billion hours of unpaid care to Alzheimer's patients annually. Medicare and Medicaid help but the financial and emotional price lands on the immediate family, most of them working or middle class and already struggling with their own daily cost of living.

By Thanksgiving Bill's condition had deteriorated and he had reached a stage at which he was irascible. He argued with everyone. Nothing made him happy, especially the meal service, an area where he claimed expertise, having been in the restaurant business for so long.