The doctor`s words hit hard, even though they weren`t aimed at me:
”The most simple and correct thing to say is that he will die of this cancer. That`s guaranteed. There may be a remission period. There is no cure.”
Dr. John M. Merrill, one of Chicago`s leading cancer specialists, was talking about my friend and college roommate Leonard Borden, whose kidney cancer has advanced to his lungs. The doctor`s tone was every bit as matter-of-fact as Leonard had led me to expect.
”Of the 300 types of cancers, he has arguably the first or second most unpredictable cancer,” Merrill said. ”With kidney cancer, all the rules are out.” The cancer may regress for no apparent reason and lie dormant for years. The average age of men getting this rare disease is 64, 25 years older than Leonard, who is 39.
Since September, Leonard has led me, more or less reluctantly, on a medical odyssey. Along the way, I`ve witnessed a man going to extraordinary lengths to mobilize himself to fight a deadly, little known adversary. And I`ve realized why he believes ”the most simple and correct thing” doesn`t necessarily equal the truth.
According to his doctors, Leonard has reached a leading-edge understanding of research on renal cell carcinoma, the most common kidney cancer.
”He`s the most involved of any patient I`ve ever had in 12 years of doing cancer,” said Merrill, 40, whose activist patients have included the late Jory Graham, author of newspaper columns and a book about her eight-year fight with cancer. ”I`ve never had anybody develop this level of sophistication, the way he reads between the lines. You don`t see that in most doctors.”
He sought this awareness not out of mistrust of his doctors or to indulge a morbid curiosity. Rather, Leonard has armed himself to fight his disease in ways his doctors cannot prescribe. His mind has become the crucible for preparing an inner assault on this mysterious invader.
”Natural events for which the causes are unknown don`t carry inherent meaning, and we can pick our own meaning,” he says of the natural event that afflicts him. ”Within reason, hopefully you can pick one that helps you. Our state of mind influences our immune system.
”My doctor can predict that this disease is a killer, but he cannot predict with certainty that it will kill me.”
They don`t give Nobel Prizes in medicine to cancer patients. But some doctors believe that cancer patients, through their own immune systems and positive attitudes, may make significant inroads against their specific diseases.
”At least you can try to avoid turning the immune system off,” Leonard said.
Leonard doesn`t prescribe his approach to others. But then no one else has his cancer.
—
Leonard Borden, a lawyer for the U.S. Department of Labor in Chicago, is not the easiest friend to have. His wit is so sharp that casual conversation can be tough. His critical skills can belittle as well as enlarge. He has never abandoned the intellectual search for personal meaning and purpose, a search most other liberal arts students set aside with their philosophy textbooks.
Leonard lives alone above a pizza shop in the Halsted Street and Armitage Avenue neighborhood. He is no recluse, however. After 14 years in his neighborhood, he is a well-known character there. ”He`s my No. 2 comedy writer outside the City Council,” says Chicago comedian Aaron Freeman. ”I`ve been stealing his jokes for years.”
Sometimes these days, Leonard quips about his ”midlife crisis.”
”It doesn`t take much to know what the academics know,” Leonard says of his kidney cancer expertise, ”when there isn`t much known.”
Leonard`s scholastic records at Knox College in Galesburg and Chicago-Kent College of Law probably overqualify him for a labor law prosecutor`s job that under the Reagan administration holds little glamor but much opportunity for public service that is a tradition in his family.
Leonard`s quest for understanding and expression extend to physical fitness, including training in judo and karate. At times, this quest struck me as a bit self-indulgent and pretentious. In hindsight, that was a poor choice of words.
Today, nine months after his first symptoms, Leonard`s physicians are calling his response to his disease a unique example of self-awareness and determination against long odds. All it took for Leonard to find his purpose and energize toward achieving it was a plum-size malignant tumor growing in his right kidney.
”Leonard is now one of the preeminent experts on renal cell cancer at the academic level,” said his internist, Dr. Mark Stolar, 33, a member of the Northwestern Medical Faculty Foundation.
”I didn`t chose this struggle, but I chose to see defeating this cancer as a struggle for which my whole life has prepared me,” Leonard says. Today, that doesn`t sound grandiose.
—
On June 10, Leonard found himself driving from the northern suburbs home to his apartment in Chicago.
”It was rush hour,” he remembers, ”and I don`t know how I made that trip. I remember thinking on the way back that I had to make it home. I remember wondering how many people in other cars driving on the highway had problems that were just as difficult to deal with. But I had never thought about them. Now, here I was.”
Leonard was returning from a radiology clinic where a search for the cause of his symptoms, first noticed last February, had just ended. Rather, Leonard had just put an end to it.
In February, Leonard had resumed health club workouts after suffering a chest injury six months earlier on a leg press weight training device. But his stamina wasn`t improving with the workouts.
”As you work out, your body becomes a barometer for you,” he said,
”just like people with a strong interest in automobiles can listen to their engine and know if it`s off by the sound of it.”
Around the end of April, he began waking up with his T-shirt soaked from sweat.
Since mid-May, Stolar and Merrill had run Leonard through a battery of tests to find out what was wrong, a rigorous process of elimination, with no answer. His blood tests showed anemia, and he was running a low fever.
Meanwhile, Leonard had begun reading about his symptoms, a process that would become nearly as intense as his medical care. By June 10, Leonard had become a discerning health care consumer. The CAT (computerized axial tomography) scan he had just received at the radiology clinic cost more than $1,000, and he wanted an answer.
”The radiologist didn`t want to talk to me,” he recalled. ”The earlier tests I`d had were negative, and I wanted to know what was going on.
”He said, well, you`ve got a tumor in your kidney.
”Having spent four years litigating black lung cases, I was very familiar with competing, conflicting interpretations of X-rays given by radiologists. So I wanted to know if it was a matter of opinion, if there was some wiggle room in the interpretation. He said no. He said it was cancer. He said fever is one of the symptoms of hypernephroma.”
Hypernephroma is a malignant tumor of kidney cells.
”Well, I didn`t know what `hypernephroma` meant. Had I known what it meant, I would have known the significance of it when I was looking up `fever` in the Merck medical manual two weeks before, because hypernephroma was referred to. But since I didn`t know what it meant, I couldn`t suggest it to my doctors as a possibility to look at.”
—
That was an error Leonard was not likely to repeat. For years, Leonard has been a walking Consumer Reports. Friends frequently consult him on the best buys in stereo equipment, clothes and other items. Leonard certainly doesn`t manage his money better than others, but he devours information on subjects that interest him.
Leonard quickly graduated from the Merck Manual, available at his pharmacy, to the libraries of the American Cancer Society and the University of Illinois at Chicago Library of Health Sciences.
During the summer, he photocopied and read numerous scholarly articles. He later distributed copies of articles to bemused, anxious friends like a professor handing out readings to a freshman class.
On June 17, his kidney was removed, the only recognized cure for his condition, at Northwestern University Medical Center. There were no signs that the cancer had spread. His research indicated that 38 percent of patients like him die within three years and 68 percent die within 15 years.
He focused on the percentages who lived. Yet after his operation, ”I had some hints about the difficulty that I was going to face when in my conversations with my doctors I would talk about finding an early warning sign of a recurrence. My doctors would try to gently remind me that early detection might only cut into the quality of my life.”
That`s because there isn`t any recognized treatment for kidney cancer that spreads to other parts of the body.
In early September, fever returned. A chest X-ray and biopsy showed tumors on Leonard`s lungs, the place where kidney cancer is most likely to reappear.
”I knew that the survival rate from advanced renal cell carcinoma was very low, less than 10 percent making it more than two years in some studies. I knew then I was in the realm of experimental medicine.”
Fifteen years and $13 billion after President Richard Nixon declared a national war on cancer, the victims of intractable cancers like melanoma and kidney cancer find themselves in a perverse marketplace. Many of these victims offer their bodies and often their wealth to research experiments, which often are highly toxic, in return for a chance of remission. Usually, it`s not a fair exchange.
”Most of the time,” says Merrill, ”the major beneficiary of a patient`s involvement in cancer research is the research. I don`t think the public is aware of the tension between research and the patient.”
”Two conflicting interests,” Leonard explains, ”are the need to acquire data which will allow a researcher to conclude whether a particular medicine is effective for treatment of large numbers of individuals, versus attempts to cure the individual patient.
”I want to make it clear that the words treatment and experimental should not be used together.”
—
Shunichi Nambawas Leonard`s judo instructor. Namba talks about balance:
”If you are tense, your center of gravity is high and you are off balance. If you relax, your center of gravity comes down. It`s a technique executed by the subconscious.
”Some people think about it from the beginning of training,” Namba said. ”I think the way Leonard started judo as a boy, he never thought about it. Later, he discovered it.”
Today, Leonard is balancing some conflicts that for him correctly may be termed ultimate.
”My youth and lack of responsibilities argue for an aggressive approach,” he says. ”If my attitude were less aggressive, what would that say about my attitude toward myself?”
At the same time, ”There is an argument to be made for not taking any experimental medicine until such time as I have further symptoms. Right now, I don`t feel sick. I don`t necessarily want to be someone`s toxicity meter. Also, depending on which drug you take, it may block you from other experiments.
”I owe a great deal of gratitude to people who have suffered and died to prove that many of these experimental programs don`t work.”
There is an alternative to volunteering for group medical experiments. In May, 1985, Dr. Robert K. Oldham, author of one of the scholarly articles Leonard studied, opened a clinic near Nashville. Oldham`s for-profit operation offers what he calls ”individualized research” for cancer patients who can afford his fees.
Oldham, an internationally respected cancer specialist and former top official of the National Cancer Institute, believes his company,
Biotherapeutics Inc., can transfer leading-edge developments in cancer research to patients more expeditiously than government-sponsored group experiments that don`t charge fees.
But Leonard doesn`t have the up to $35,000 Biotherapeutics requires, despite a considerable amount of hustling since September. A trust fund established in September by his friends is far short of that.
Leonard is balancing the distress of not being able to afford the customized Biotherapeutics program, which, of course, may not work, against the distress of agonzing over money.
”It`s a pressure I feel when I let myself believe one of these experimental programs is better than others,” he said. ”Money isn`t keeping me from health. Cancer is going to try to keep me from health. Lack of money has kept me from research that`s designed around me.”
—
Balance.
Medical researchers quarrel over the value of positive mental attitude in fighting disease and the reality of mind over matter. Leonard has reached an equilibrium, which is neither simple optimism nor blind faith.
”Most people treat their bodies as baggage their brain has to carry around. I have a brown belt in judo; the mental aspects of the martial arts appeal to me. This disease is an insult to my bodily integrity, and I`m determined to fight it.
”I believe knowledge will help me fight the cancer. If I look at a picture of the cells themselves, I feel it makes cancer cells less
threatening. It makes it easier to visualize beating it. It puts it on the level of being a teeny thing that maybe I can generate enough white blood cells to eat.
Texas cancer specialist Dr. O. Carl Simonton has tried a similar approach, which has sparked considerable controversy among medical
researchers.
”I`m in complete agreement with what Norman Cousins says about the patient`s responsibility to return himself to health,” Leonard says.
”Doing research for me is an opportunity to exert control or give myself the feeling that I`m exerting control. Research is an opportunity to use a facet of my life that has always been important to me and has always held me up. That`s my analytical ability. This is the liberal arts major`s final reward.
”Research also gives me an opportunity to increase my confidence in my doctors, because it buttresses their opinions. It therefore increases my confidence in their opinions in areas that I can`t do research on, areas that require clinical experience,” Leonard says.
”The role of the patient should be creating a therapeutic relationship with a doctor, a healing relationship. I`m sophisticated enough to avoid TV lawyer pugnacity. I am searching with my doctors, as opposed to trying to be partisan.”
”It makes it easier for me,” said Merrill. ”I`m less frustrated in dealing with a man who feels he`s accomplishing something. People do have more control over their fate than they may think.”
In experimental medicine, no one has answers. ”My doctors are saddled with that as well as I am,” Leonard said. ”I want to participate in the selection of what is to be done. I want to see if I can cut myself a little bit of leverage and spare myself certain types of suffering.
”Once you`ve done the research, you can flow with it.”
—
Merrill says Leonard is remarkably fit for someone with advanced kidney cancer.
”I`ve seen people who by weight have much less cancer than Len waste away,” he says. His patient has resumed working out and has taken a leave from his job to continue his fight.
”I have time that I put into the disease and the research,” Leonard says, ”and I have time that I put into just enjoying life. I have a network of friends here whose companionship I find energizing.
”There is time when you`re just down, when you are lazy or slow or you want to be by yourself or you just want to fantasize or be nostalgic or think about questions in philosophy.
”Or there are times when you just want to watch people and watch them in a new way.”
