Live Like You Were Dying
The Land Correspondent Liz Morrison Two years ago at Christmas, Marilyn Smith awaited her husband Leon's death from a rare illness. Learn how the Stevens County couple not only survived the terrible ordeal, but thrived because of it. Two years ago at Christmas, Leon Smith, a dairy farmer from Stevens County, awaited his death. Nine months earlier, just before Easter of 2003, Leon learned that he had mesothelioma, a rare lung cancer caused by exposure to asbestos. His oncologist told him to "go home and figure out how I wanted to die." Leon turned the farm over to his son, celebrated his 55th birthday, did some traveling and planned his funeral. By Christmas, the end seemed near. His days were fogged by narcotic pain relievers and a constant fight to breathe; his nights were filled with dreams of family members who had died and were waiting for him. But Leon didn't die then, as everyone expected, and in February 2004, his oncologist shook his hand and told him he was apparently a miracle. In the two years since then, he and his wife, Marilyn, have done a lot of thinking and public speaking about their experience with cancer. What they offer people is not the story of a miracle cure for a fatal illness — "I don't say I'm cured," Leon said — but a message of hope and an example of how to live well, in the fullness of each day, without fear of death. A nagging cough Leon grew up on a dairy farm north of Morris, in the house he still lives in. He graduated from Morris High School in 1966 and joined the Marine Corps, serving two tours in Vietnam. He returned to Stevens County in late 1970, weary and homesick for the peace and quiet of the dairy barn. He married a girl from Starbuck and settled down to milk cows, following his father, grandfather and great-grandfather into farming. He and Marilyn, a banker, expanded the dairy operation and raised three children. When their son Chris joined the business in 1998, they increased the herd to 70 cows and ran 1,200 acres of grain and alfalfa. A tall, robust man who loved hunting and the outdoors, Leon was seldom sick. But he had come home from Vietnam with a tickly, dry cough, which persisted, even though he didn't smoke. It was "one of those nagging, go nowhere type coughs, which I worried about in the back of my mind," Marilyn said. "But living on a farm, working with cattle all the time, it was easy to use that as an explanation for the cough." In late 2002, Leon's cough got much worse. He was treated for pneumonia at Christmas, but when he didn't respond, his family doctor ordered a CAT scan and discovered fluid on his right lung. "They drained the lung and sent the fluid in for a biopsy, " Marilyn recalled. But the biopsy showed nothing abnormal. Diagnosis In February, 2003, the Smiths were referred to a lung specialist, who suspected that Leon had cancer of the mesothelium, the protective sac that covers the lungs and other internal organs. To confirm the diagnosis, it would be necessary to remove tissue samples for examination under a microscope. Before Leon's biopsy surgery the next month, Marilyn had looked up mesothelioma on the internet. "I was devastated at what I learned," she remembered. "It is, according to research, 100 percent fatal." The biopsy revealed tumors of the mesothelium on Leon's chest wall, diaphragm and right lung. After the surgery, Leon "started crying when he saw me," said Marilyn, "and I grabbed his hand and told him that we would walk through this valley together." A few days later, Leon asked his surgeon how long he had to live. Maybe a year, the surgeon replied. It felt, Leon said, like being "hit in the head with a sledgehammer." Treatment? Mesothelioma is a disease in which cells of the mesothelium become abnormal and divide uncontrollably. Usually caused by inhaling or swallowing tiny asbestos fibers, it takes decades to develop, according to the National Cancer Institute. Leon isn't aware of having worked directly with asbestos. But asbestos has been widely used in many industrial products, including cement, brake linings, shingles, flooring, textiles and insulation. For example, the aircraft Leon repaired in Vietnam and the tractors he fixed on the farm probably had asbestos in them, he said. Standard treatments for mesothelioma include surgery, radiation and chemotherapy. Leon's surgeon encouraged the Smiths to visit the Mayo Clinic in Rochester for a second opinion, and to learn about the newest treatments for mesothelioma, which is still a rare cancer. According to the National Cancer Institute there are an estimated 2,000 new cases a year in this country, although that number is expected to balloon in the next two decades. In April, Leon's oncologist at the Mayo Clinic suggested an arduous experimental treatment that included four months of chemotherapy, followed by surgery to remove Leon's right lung, diaphragm and chest wall lining. After that, two or three months of radiation. Altogether, it would be about nine months of treatment, during which time he would be very sick. Chances of surviving the treatment? Thirty to 40 percent, the Smiths were told. Chances of a recurrence within two years? Ninety-five percent. "We told them we wanted to go home and think about it," Marilyn said. On Good Friday, Leon made his choice: No treatment. "I figured it was going to take me one way or another," he said. "I didn't want to be sick. I wanted to live every day to the fullest." A good summer Throughout the spring and summer of 2003, Leon felt good. He worked some on the farm. He and son Chris decided to sell their beloved cows because the dairy operation was too large for one man, and they knew Leon would soon be unable to work. Leon and Marilyn took several trips. The whole family got together for a week at Otter Tail Lake. In June, they threw a big bash for Leon's 55th birthday. Liz Morrison Marilyn and Leon Smith are making the most of the time they have left together. They now have more time left than what they thought only a few years ago when Leon was on his death bed. "We decided to celebrate life," Marilyn said, and more than 700 people came to the party. The Smiths also met with their attorney and their accountant to settle their affairs. Leon planned his funeral, ordering his grave marker, choosing his pallbearers, arranging for the services and music. One of his friends, a local minister, even promised to sing "Ninety-Nine Bottles of Beer on the Wall," Leon said, "but not at the church." In September, Leon began to have pain in his back. "I just couldn't get comfortable." Fluid from the tumors accumulated in his chest cavity and had to be drawn off every three weeks. Although he was growing steadily weaker, he managed to go bear, antelope and deer hunting that fall. In November, Marilyn took a leave of absence from her job and Leon started receiving hospice care at home. He needed oxygen to breathe and morphine for the pain. December passed in a haze. "I was in a lot of pain," Leon said. "I really don't remember it very well." An X-ray in early December showed a solid wall of tumors filling the right side of his chest and pushing on his esophagus, he said. His caregivers estimated that he had a month or two left. An unexplained recovery Unaccountably, in January 2004, Leon started feeling better. The pain receded, his breathing eased, and he no longer needed oxygen or morphine. On Jan. 10, Marilyn recalled, he was out on the tractor spreading manure. In late January, Leon caught a cold and went to see his family doctor, who listened to his chest and sent him immediately for X-rays. The results were unbelievable. In fact, Leon said, his doctor at first thought he had the wrong X-rays. Leon's chest and lungs looked normal. The tumors were gone," Marilyn said, "and the astounded doctors "were almost dancing in the halls." In February, the Smiths saw Leon's oncologist, who told them, "I'm sure we must have misdiagnosed your disease, because this just never happens with mesothelioma." But later, Marilyn said, the oncologist "shook Leon's hand and said, 'Congratulations, you are apparently a miracle.'" Strength, peace, contentment Two years later, Leon, 57, remains guarded about his prognosis. "I have it in the back of my mind that the asbestos is still there. Where did the cancer go? It might recur." When he got bronchitis this fall, for example, he thought the "meso" might be back. "You get a pain, you wonder." Still, Leon said, "When you are born, your destiny is to die." Having faced his mortality, he has discovered that "I'm not afraid to die." That has been liberating, Marilyn said. "I wish I could tell people that death is nothing to be afraid of. You lose something when you live in fear. You don't live as well." During Leon's illness and in the two years since, prayer has sustained them both, she said. Yet, "I never asked God to heal Leon, nor did he." Instead, she said, they both prayed for "strength every day, and also for peace and contentment." Sharing story to help others Marilyn is now retired, and she and Leon, married 34 years, are enjoying lots of travel. Leon — accustomed to decades of a solo dairy farmer's seven-day-a-week work schedule — got some more cattle on the place. He feeds out about 50 head a year and helps Chris with fieldwork. Last spring, he helped a friend lamb 900 ewes, and this fall, he combined most of his son's beans and corn. "I enjoy it. If I can work, it's a pleasure. When I was sick, all I could do was look out the window." Over the past two years, the Smiths have given many talks to church groups and others. "We speak when we're asked," Marilyn said. "We share our journey, what it was like, what we went through. And we talk about our faith and how it helps us." After every presentation, she said, they are invariably surrounded by people eager to tell their own stories, "so we know we are reaching people, one at a time." Every day is a beautiful day This Christmas, as usual, the Smith family will gather at Leon and Marilyn's farmhouse — the three kids and their spouses, their five grandchildren, both their mothers, maybe some other relatives and friends. They'll probably get to reminiscing about past holidays, about the Christmas Eve worship services they hosted in their barn, everybody sitting on clean straw bales, the animals all around — one time, a cow giving birth during the service. They'll remember the Christmas of two years ago, when Leon was so sick. And they'll savor again the words their 5-year-old grandson spoke last Thanksgiving: I'm thankful that my grandpa is still here. For Leon, reprieved, unexpectedly, from imminent death, the sweetness of life has not faded. "I'm more emotional now," he said. "Every morning I get up and thank the Lord for letting me have another day. Every day is a beautiful day."Illness teaches farmer to live without fear of death
