A semidispassionate search for ways to overcome disease by 'holistic' means.
THE ONLY ADVANTAGE of having cancer, my older sister reported back in the 1960s, was that no one dared tell her that illness was psychosomatic. She got the kind of scornless treatment, the sympathetic care, a real disease deserved.
But the 1970s brought holistic health, a different kind of thinking about the mind-body connection.Originating in the ancient East, renewed under the tolerant skies of sunny California, it has now exploded in the darker, more skeptical Northeast, telling us not just that psyche could affect soma, and vice versa, but that we human beings are psychobiological unities, integrated within ourselves and our environments. Illness in an alien invasion of the positive harmony between mind and body; treatment an effort to restore this harmony.
What's more, this treatment is accomplished not only through pills and their sister therapies, like surgery, but through a wild mix of bodily, psychological and social interventions -- meditation, acupuncture, yoga, biofeedback, vitamin therapy, you name it. Since mind and body work as one, there can be an internal cause and cure, if, only you take responsibility for finding them. Patient must minister to himself not only for ulcers and a sore throat, but for heart disease ("Beware, stressy type A"). And now, for cancer.
Cancer and holism! During my repeated bouts with the disease which began almost seven years ago, the idea seemed for the birds -- or at least for the young, prevention-minded, veggi-consuming, counterculturist, not for a middle-aged breast cancer patient like me. How could those weirdo new mind-body healings help someone whose grandmother had gotten cancer at just about the same age, and in the same pattern? Norman Cousins might laugh himself loose from a rare, degenerative disease called ankylosing spondylitis. But there was something impractical -- even judgmental -- about the idea that I could affect the course of a chronic illness, now so prevalent and so feared that its very onset caused a modern woman to commit suicide on public TV.
There was something anti-intellectual and unscientific, too, about letters and phone calls I received as a medical writer recommending (often in shrill voices) a mishmash of holistic remedies, from Laetrile to meditation for stress. After all, I had been exposed repeatedly to the slow progress of the academic medical scientists, and had reported their arduous grappling with the mysteries of the wild cancer cell. With poet-physician Dr. Lewis Thomas I could anguish that though we have come a long way indeed in undestanding ourselves, still, "We are dumb."
Lately, I have been more open to the idea. I have not tried faddist drug, nutrition and vaccine "cures." I have stayed away from the so-called cancer underground; I have not wandered south of the border to be purged by coffee enemas.
But I have been exploring a world where herbal teas sit on coffee tables, acupuncture charts adorn walls. First names -- there are few last names in the land of holism. Young people, mellifluous voices on tapes . . . tapes . . . and more tapes. An upbeat atmosphere of touching, yes even of love. A portion of professionalism. Some solid training, and some solid help, especially for the often depressing day-to-day problems with family, friends, work, or just feeling punk, which beset the vulnerable, long-term cancer patient. And most reassuring, a sometimes-held view that the help offered did not have to be an "alternative" to the conventional treatment that had helped, if not cured me. If I picked my helper carefully, I did not have to choose between the two.
How did it happen? Experts like Sloan-Kettering psychiatrist Dr. Jimmie Holland point out that cancer patients, egged on by well meaning, "turn every stone" friends and family, begin to try unconventional therapies as the convetional ones become more ineffective (and more painful and exhausting). This may be true of me, though the traditional "cutting, burning and poisoning" cancer therapies (surgery, radiation and chemotherapy) have enabled me to lead, if not what the doctors call a "normal," then a seminormal life.
I think it was the sheer volume and variety of holistic material. I received as a medical journalist that finally tickled my curiousity. A torrent of leaflets and brochures advertised their wares: "Guided Imagery as a Therapeutic Technique;" "Workshop on Therapeutic Tourh;" "Getting Well Again -- One Team's Approach to Healing Cancer and Improving Health."
If so many people, some of them seemingly respectable, were involved in all this, might there not be something at least to the psychological approaches?
I had flirted with the idea that my emotions might affect my cancer pain during a period of few years ago when I suffered especially nagging backache. I had discarded my clumsy back brace, which made me sweat and my clothes balloon. Doctors and a pain clinic had only give me more pills. Small doses of Elavil, the latest, had made my hands tremble.
I wanted competent, not shaky, hands. I consulted a psychologist, Lester Turner, who specializes in hypnosis and pain control. I was fearful, lest I somehow lose control over my mind. But with the hypnotic tapes he made for me to practic with, I could soon put my right hand to sleep by concentrating on the last time the dentist gave me Novocain. I could not transfer the numbness to my aching back, but I did discover that this was not so way-out, after all. Indeed, the tapes the psychologist made for me to practice with at home helped me relax.
Some months later, when my solemn Harvard, National Cancer Institute-trained oncologist at George Washington University Medical Center, Dr. Philip Cohen, suggested I try consulting a stress management center, I found myself agreeing. I had tried sitting in a swirling hot tub. I had tried positive thinking, even a prayer or two. Then I made an appointment with Lynn Brallier, a psychiatric nurse who had practiced biofeedback at the Psychiatric Institute of Washington.
Somewhat to my surprise, the relaxation tapes Lynn gave me to use two to six times a day turned out to be a smashing success. Hard driving I, who sometimes did not even want to stop for lunch, found myself listening twice, even three times a day. As I heard that calm, low voice instructing me how to relax my muscles, from the tiny ones on my scalp, down to those in every toe, tension ebbed. At night, when I turned on another Brallier tape, "Suggestions for Restful Sleep" ("Say to yourself, I am at peace. I am at peace. You are falling asleep now, you are falling asleep"), I fell asleep.
When Lynn sent me to an adjoining office, skillful massage therapist Joan Delaney seemed to understand just how the various parts of my creaking body fit together. After she had manipulated the right muscles and pressed the right joints, I elt energized instead of tired. And when Lynn discussed my difficulties with me, or talked (unlike a traditional psychotherapist) to my doctor or my husband about them, she helped me stay on an even keel. She seemed to emphasize wellness, instead of illness -- not what was bad with me, but what was good. I was even able to treat a third operation as though it were another bump on a bumpy road.
Intrigued, I began to look around a bit further. In a Guided Imagery Workshop with charismatic Marielle Fuller of the UCLA faculty, at the Washington School of Psychiatry, I imagined myself in a large, sunny meadow, smelling the pungent cornflowers and sweet grass. I met a guide (a wizard). I dug in the ground and found an object. What was the object? Who -- oh who -- did I choose to give it to at this point in my life?
In my old khaki pants, I lay on the rug in an empty living room in a big house off 16th Street, pushing various limbs against the floor, and trying -- through the Feldenkrais method -- to increase my ability to handle my body comfortably. I listened warily in a simple Bethesda church as former atomic scientist and spiritualist Jim Goure talked about "effective prayer" -- healing yourself through finding the light, and healing others through visualizing the light in a neighbor ("I release all of my past, negatives, human relationships, fears, inner self, future and death in the LIGHT . . . I am a LIGHT being.")
At a St. Francis Center Conference at Georgetown University Medical Center, I listened as controversial psychologist Lawrence LeShan describd his profile of a "typical" cancer patient: Someone who lacked closeness to one or both parents. Someone who has suffered a loss. Someone who feels hopeless, helpless, caught in the web of life, who says: "If the egg drops on the rock -- poor egg. If the rock drops on the egg -- poor egg." She is the egg.
I read, I talked to experts. Whatever I did, and whatever I asked, my question about the validity of applying holistic concepts to cancer kept coming back to the work being done by Carl and Stephanie-Matthews Simonton at the Cancer Counselling and Research Center in Fort Worth.
The Simmontons have become the gurus of the cancer-holism connection. Other holistic therapists working with cancer patients quote them, discuss them, some emulate them. They have trained some 500 therapists, though they assume little, if any, responsibility for those trainees' work. Psychologist Turner gave me a copy of one of their tapies, on which I heard Carl Simonton inviting me to picture my strong, white cells eating up the weak, confused cancer cells. (I had never thought of cancer cells as weak and confused before.) The National Cancer Institute's Dr. Bernard Fox, author of the most highly regarded survey of psychological factors and cancer, referred in an interview to "Simonton-type approaches." Fellow patients in clinic waiting rooms or hospital corridors repeatedly asked if I had tried the Simonton techniques -- they had, they would say, and found them helpful.
Luckily for me, the Simtons came to Washington in May. I would have found it difficult to travel to Texas to interview them and observe their treatment. And I would have found helpful.
Luckily for me, the Simontons came to Washington in May. I would have found it difficult to travel to Texas to interview them and observe their treatment. and I would have found it expensive to participate ($1,900 for a 10-day course, plus hotel costs for myself and spouse -- who would have to come too).
In the course of an interview with Dr. Carl Simonton, his guest appearance on a radio talk show, and a packed day-long seminar at the University of Maryland sponsored by an organization called Quest, I got the chance to see the Simontons in action.
He is a 38-year-old physician trained as a radiation oncologist, with brown curly hair and beard, wire-rimmed glasses, a penchant for four-letter expletives and a willingness to appear on a platform in his jogging shorts. A Southern Baptist preacher's son, he gave up practicing radiation oncology a year ago Christmas; now he describes himself as someone who works with cancer patients using lifestyle counseling. She is a hard-driving, brainy, articulate young brunette in a California-smart white suit; though she is in a doctoral program, she has yet to receive her PhD in clinical psychology.
At their research center, they are conducting what he emphasizes is a pilot study which grew out of work begun when he was a resident at the University of Oregon more than 10 years ago. There he noticed that some patients lacked hope; they did not seem to want to get well. The Simontons tried a new method to motivate a 61-year-old man with advanced throat center who was taking radiation therapy.
The man was very weak, his weight had dropped from 130 to 98 pounds, he could barely swallow. Carl outlined a program of relaxation and mental imagery for him (similar to those Stephanie had found used to motivate people in business). He was to set aside three blocks of time each day, first to compose himself by sitting quietly and telling each muscle group to relax, head to foot. Then in this more relaxed state, he was to picture himself in a pleasant, quiet place from nature -- by a creek or waterfall, on a beach.
Next, he was to picture his cancer vividly, and then his treatment -- millions of tiny bullets of energy hitting his cells, including his weaker, more confused cancer cells. Last, he was to picture his body's white blood cells coming in, swarming over the cancer cells, picking up the dead and dying ones and flushing them out of his body through his liver and kidneys. He was to visualize his cancer decreasing in size and his health returning.
The patient -- who continued radiation therapy -- responded dramatically; he gained weight and his cancer progressively disappeared. The relaxation-imagery technique the Simontons used with him is still the center-piece of their approach. It is combined with other activities and treatments designed to teach people to live in more healthy ways -- exercise, diet, regular (usually group) counseling sessions, and a goodly dose of play. Patients learn to use such tools "smart" -- too much exercise, for instance, can make you feel worse, the right amount can make you feel better. They must continue under the care of a primary oncologist, and can remain in treatment for many months. Importantly, they are encouraged to probe deep into their lives, identifying what unhealthy behavior might have weakened their bodies so they succumbed to cancer, and conversely, how they can change to more healthy ways -- gently, and at their own pace -- and get rid of the disease.
All this is based on the theory, held by the Simontons, and others, that cancer is not a disease which strikes out of the blue. It develops, they hold, out of a complex interaction between our personality traits and the stressful events we encounter. Our immune systems, nature's first line of defense, forms the link between the two. During the course of a lifetime, cancer cells develop in all of us; usually hey are surrounded and conquered by the cells of our immune system. If we are stressed by a demanding boss or a nagging spouse, our central nervous system can suppress this immune system. And hormonal balances can further suppress them.
This happens most often, according to the Simontons, to people with so-called "cancer-prone personalities." Like Lawrence LeShan, whom I had heard a few weeks before, they describe these people as those with poor self-images, who bottle up their resentments, have trouble forgiving and forming long-term relationships, and importantly, have lost a serious love object or life role six to 18 months before their diagnosis. (All of the 40-odd new patients who come to the Simontons each year must fill out a form identifying the major life events of this period.) So they feel hopeless and helpless. In a sense their despair is turned inward toward their body cells. These cells become vulnerable to stress, and to cancer.
The Simontons say their pilot study results thus far show their patients, all of whom suffer advanced malignancies, live twice as long as those reported currently in the literature (or "historical controls"). Carl Simonton told an Australian medical meeting this year that 71 of his breast cancer patients lived an average of 38.5 months as opposed to the some 19 months live by historical controls.
The NCI's Bernard Fox points out that Simonton patients are those who are well enough and can afford to travel to Fort Worth and sit through a program. Yet the Simontons compare these patients not with a specific set of controls -- that's hard to do -- but with all patients, including those on their deathbeds. What's more, only a fraction of the men and women invited into the program accept. Possibly they feel less depressed and are indeed weller than those who fear, as Fox puts it, they "could not take 10 days of that stuff."
Their patients, the Simontons contend, do more than live longer. They also live a more vibrant, better life and die in a better, less painful way. In Maryland, Stephanie told of a patient who worked all day, came home and died peacefully that night. Carl stressed the importance of their "quality of life" approach, comparing it to that of oncologists in major medical centers dependent on study funds who must keep patients on this combination of drugs or that until they die, regardless of the quality of their lives. Bernard Fox simply says he has yet to see any Simonton quality-of-life study results; their reports, he notes, are anecdotal. Others point out that perhaps the Simontons' patients have simply been helped by a switch from the often cold, scary ambience of high medicine to one of warmth and caring.
One thing is clear. The Simontons are not your usual medical team. When Stephanie Simonton told some 500 people -- the majority of them cancer patients and counselors -- at College Park that she hoped a cure for cancer would not be found, as a cure for polio had been, I was shocked. But most of the audience seemed to accept her (to my mind cruel) reasoning, that such a vaccine-like cure for our sufferings would mask the societal issues involved, such as the stressful ways we bring up children, or the manner in which we allocate medical funds. One rapt woman responded: "Thank you, Stephanie, for your excellent presentation and for your guts."
The layman-reader, especially the seriously ill cancer patient desperate for clues, can be baffled by reports of studies attempting to link psychological factors, stress and cancer. Common sense tells me that many people I knwo who are not depressed at all or who are innocent children develop ugly cancers; con versely many depressed, seemingly helpless, hopeless people go about their business, cancer-free. Common sense tells me I do not fit into the Simontons' description of the breast cancer pattern: a "nice" person who does not express her sadness and vulnerability (here I am even writing about it all) and is confused about her role in life.
Riffling through the voluminous literature, my doubts are heightened by studies like Robert J. Keehn's which found the great stress of captivity suffered by prisoners of war did not accelerate malignancies and other degenerative changes in them in later years. Still, my bone pains do increase when I am tensely trying to perform my best in a television show. And they do ebb after I laugh my way through a funny movie.
Similarly, UCLA's Drs. David Wellisch and Joel Yager in "Controversies in Cancer Treatment" (G.K.Hall, Boston) ask: "Is there a cancer prone personality?" and answer: "No." Available evidence does not support the concept of such a creature; it is at best inconclusive.
The knowledge that you have cancer can profoundly color a patient's emotional state, and the cancer itself can cause psychological changes; depression may be a consequence rather than a cause. Yet most studies are retrospective rather than prospective. They do not predict (even with statistical accuracy from groups) who will and who will not get cancer.
As if all this were not enough, studies of animals, where conditions are far more controllable than in human beings, are often contradictory.
The best psychodynamicists have been able to do thus far, the UCLA team concludes, is offer interpretations as to why people who have already developed cancer have done so, but not why they, rather than other people, have developed the disease. They psychologist who heads the National Cancer Institute's Behavioral Medicine Branch, Dr. Sandra Levy, agrees. There is a clear, complicated link, she says, between higher cortical functions and biological response, but scientists do not yet fully understand it. The Simontons and others like them are making a "quantum leap" in practicing therapies assuming a direction of influence from mind to body -- that imagining your cancer cure can actually bring it about.
But Levy agrees with Sloan-Kettering's Holland that no replicated findings have related altered emotional states to cancer in humans. Admitting to the rise of a self-help zeitgeist in the land and the popularity of the Simonton-type methods, she says there may be a need in the field now for a well designed, controlled, clinical trial, done by dispassionate professional researchers, comparing the Simonton approach with that of more traditional support therapies for cancer. Medical scientific standards of quantification and replicability must be met, as they have been met in the tests for Laetrile.
Until this is done, what about us, the cancer patients, hanging in there? The naturalistic approach of increasing our bodies' own fight against disease appeals to us. The awful thing about cancer is that it is so sly and nasty, creeping crazily around inside of us.
Some experts say that even if the Simonton-type methods do not cure cancer, patients who try them often emerge revitalized, renewed in spirit. Unlike toxic chemotherapy, for example, they offer something for nothing (except money). If they give hope and cannot harm, why not try them?
Other experts answer that they can harm you. Patients have been known to abandon conventional treatment to try them, only to collapse. Sloan-Kettering's Dr. Holland adds there can be more subtle harm done. Patients who already may feel severely punished can be made to feel guilty if they think their cancer is their own fault. They can feel guiltier still if their cancer progresses despite their self-help efforts.
What I have concluded after several months of investigation, is that we can tap into the holistic therapies as we wish -- not as alternatives, but as adjuncts to our treatment. At the very least, they can be palliative, helping us relax, deal better with our difficulties -- in sum, increasing our sense of wellness instead of illness. At the most, they could help improve our health, though we must wait for more solid proof before we raise our hopes too high.
But caveat emptor , friend patient. Be painstaking in checking the credentials of those who offer you their services, whether it is as leader of a group or an individual therapist. Be sure you are comfortable with their assumptions, be they medical or spiritual. Be wary of those who make you weep because you cannot get your act together. Who is to judge if your cancer is your "fault" or a phenomenon of nature?
Be wary, too, of therapists who would deprive you of what modern medicine has to offer us. If they are true holists, they will acknowledge the strong powers of the body as well as of the mind, and the uncertainties of the complex relation between the two. As astute oncologist Dr. Michael Van Skoy-Mosher puts it: "What goes on below the neck is just as important as what goes on above it. The function of the neck is to connect the two." CAPTION:
Illustration, no caption, By Steve Mendelson -- The Washington Post