THEY ARE cancer patients, they insist, not cancer victims. They meet weekly for between two and three hours of attitude therapy. For them, cancer is not a Death Row disease that you automatically die from but an illness you can live with: live fully, and perhaps live longer than originally thought.
Each in the group has undergone surgery in hope of stopping his cancer's spread. All have decided that whatever treatments they had placed faith in before--from daily drug therapy for one patient with ovarian cancer to three surgical operations for another--they now want to fight or control their cancer other ways than only medically. They are calling on the powers of the mind, on emotions and group support as helps in strengthening the body's immune system to defeat cancer cells. They nod approvingly when one member of the group says with passionate conviction about the weekly meetings, "This is the best medicine I've got."
Cancer attitude therapy has been an established part of American psychiatry for a number of years. It has been bolstered, on the popular level at least, by the death-and-dying movement that stresses the quality of life as the quantity of life itself ebbs away. Its best practitioners are neither pain-control quacks preying on the desperate nor are they debunkers of the traditional cancer treatments--surgery, radiation and chemotherapy--who offer the psychological approach as a laetrile of the mind.
The leader of the group that meets at the Washington School of Psychiatry is Dr. Robert Kvarnes, a 66-year-old psychoanalyst who for 29 years has been director of the school, at 1910 New Hampshire Ave. in northwest Washington. The other four members include Dr. Morris Chalick, 45, a psychiatrist who underwent surgery for melanoma, a skin cancer, a year and a half ago; Gail Polsby, 43, a clinical social worker who practices privately as a psychotherapist and who had a rare cancer that required the removal of her bladder in 1975; Monsignor Geno Baroni, 51, who has peritoneal mesothelioma, a rare abdominal cancer; and Dorothy Joyce, 57, administrator of the treatment clinic at the Washington School of Psychiatry, who has ovarian cancer.
This group differs from conventional attitude therapy programs. The guide for the group, Kvarnes, is a psychoanalyst who has cancer himself. His approach to cancer attitude therapy is no exercise in wellness chic. His own health--and life--is on the line, a thin line, he is the first to admit.
From mid-April to early June, I was an observer at six therapy sessions, all on Thursday mornings between 9 and noon. In addition, individual interviews were conducted with Kvarnes and Baroni. Initially, it was undecided whether pseudonyms or actual names would be used. But as time passed, "going public," as one member put it, was a difficulty for no one. In fact, because all five of the patients were in caring professions--four in medicine and one in religion--the giving of permission to use names was seen by them as an extension of the positive attitude they were trying to affirm in themselves and spread to others who have or may get cancer.
It is a group that has freed itself of the cancer pall. In none of the sessions, not even for a moment, did anyone give in to gloom or despair. Most Americans have been conditioned to equate cancer with slow, agonizing, unstoppable death. Cancer is the handy metaphor for inevitable destruction. In the Watergate hearings, high drama was reached when John Dean told of going to Richard Nixon to say that a cancer was eating away at the presidency. He was telling Nixon the rap wasn't to be beaten. But we operate on a double standard. A Henry Kissinger can suffer heart disease and hie off to the hospital and the public is regaled with the details, before and after. But a Hubert Humphrey or a Steve McQueen can contract cancer and a great effort is made to hide it.
The get-cancer-and-you're-a-goner syndrome came up in several of the sessions. Everyone had stories about what it felt like to be on the receiving end of people wondering why they were not yet dead and buried. In one session, a member, breaking in bittersweetly, said, "In the last few weeks, I've had several people confronting me. I don't know whether I--related or unrelated to my cancer--have provoked them. Or whether it's coincidental that it's happening now. Or whether people confronted me because they felt, 'Oh well, he has cancer, we don't know how much time we have to tell him this so we'll tell him now.' Or that they see me still okay a year and a half later and have a certain feeling of resentment--after they have felt sorry for someone, pitied them, done something for them--and everything's fine."
Baroni, a cheerful spirit who has a gift for extracting the wry, laughed and shook his head knowingly. He said that had happened to him, too: " 'You look well,' they'll say, 'What's wrong with you? You're not supposed to be this well. You're supposed to be pretty sick.' " Baroni, a former assistant secretary of HUD during the Carter administration and currently an aide to Archbishop James Hickey, suffers from the same type of cancer Steve McQueen had.
Another, agreeing with Baroni, said that with cancer "you're supposed to have sunken eyes and really look terrible."
No one in the group had The Terrible Look. Nor did anyone look at his cancer-interrupted life with fear. Much of this seemed due to positive feelings generated by Kvarnes. He is reflective, fatherly, well-read, a man given to drollery and held in affection by many of the more than 100 mental health professionals who teach at the school. His third-floor office is roomy, green-carpeted, brightened by house plants and four abstract paintings but otherwise undisturbed by a decorator's touch. Kvarnes, whose mother died of cancer at 66, underwent radiation treatment in late 1979 for prostatic cancer. A year later it was learned that it had spread extensively to the bones. An orchiectomy--the removal of the male hormone glands--followed, on the medical theory that this type of cancer, when it spreads to the bone marrow, often depends on the male hormone. A recent bone scan revealed what Kvarnes calls, with guarded delight, "a marked reduction" of the cancer.
Kvarnes organized the group in late 1980 at the urging of his colleague, Gail Polsby. Married with two adopted children, she saw the need for the therapy program because "I had had a hard and lonely time that year (1975) when I thought I was going to die, and where most people who had my kind of tumor died quickly. I couldn't find people to talk with me about my illness."
In the sessions, Morris Chalick sat between Polsby and Kvarnes. Chalick, a bicyclist, amateur actor and who came to Washington in 1968 to work for the Peace Corps as a staff psychiatrist, sees a surgeon and oncologist every six weeks. "I'm at a stage where there is nothing. But something can always pop up." Chalick, introspective, well-groomed and respectful of his elder, Kvarnes,was, as much as anyone, keenly sensitive to the group's mood.
Dorothy Joyce often arrived a few minutes late. But gladness would lighten the faces of those already present when she came in the door. They knew she had just driven into town from her daily drug treatments at NIH. It was as if her being physically able to come to the therapy session symbolized a victory celebration for life.
Baroni was the natural storyteller who ranged from jovial tales about his early days as a priest in the coalfields of western Pennsylvania to accounts of people being dumbstruck when they casually ask "how are you" and him replying, "not so hot, I have cancer."
As the leader of the group, Kvarnes is cautious against overselling the benefits that might result from the weekly meetings. But neither does he see the process as an exercise in aimless faith healing. The middle ground, he explains, is that the group is organized "on an experimental basis."
"We're going on the hunch that what we're doing makes a lot of sense," said Kvarnes. "But it will be a while before we compile a record that would sway any skeptical physician. There's an absence of a caseload. Say you have 100 cases that you've worked on. You can report that 78 percent of the time you get this, in 21 percent you get this and one percent that. We don't have those kind of data at all. The hunch that we're going on is that the person's attitude affects the way that the body works against the cancer cells. The mediating agent seems to be the immune system. We're going on the pretty strong hunch that we can, by our efforts, influence the way the immune system works. I say hunch because it's not something that's verified by our or anyone else's statistics."
Between the poles of hunches and scientific verification is Dr. Nicholas Hall, an assistant research professor in psychoneuroimmunology in the department of biochemistry at George Washington Univeristy Medical Center. He is working with Kvarnes on this project and is enthusiastic about it.
"Physicians have known for a long time that emotions affect disease," Hall said. "But what is the mechanism? I'm optimistic that Dr. Kvarnes' group will provide for us a model for which there is no lab animal counterpart. The results of his investigation, coupled with the results of ongoing animal studies, will help us to better understand the complex interrelationship that appears to exist between the central nervous system and the immune system."
Although Kvarnes and Hall have arranged to conduct outside tests to determine if the ability of the patients' white cells to fight off the cancer cells is changed during the course of the therapy, the talk within the sessions is predominantly on the human, not the scientific, level.
"We Got it All!"
On April 15th, the session began conversationally. Kvarnes, as he was to do every session, loosened his collar and tie and unwrapped a morning munchie, a thick slab of peanut butter between two wheat crackers. Baroni, on a green leather lounge chair with his legs slung over a footrest, recalled the earlier bouts he had with cancer, in 1973 and 1980. Both times he told almost no one of his illness. The group was curious about this, and questions came:
Chalick: "Wasn't it tough on you to have a secret?"
Baroni: "A secret? Yeah, I had a scar on the neck from a lymph node operation so I wore turtlenecks a lot. I really didn't want to talk about it. I even avoided doctors."
Joyce: "Why didn't you want to talk about it--because you were afraid you would have to identify it?"
Baroni: "I was afraid. I just didn't want to talk about it. I would keep my appointments. I went to get my regular checkups. Those times it was surgery. This time, though, I had all those treatments for eight weeks, every day. I went through various degrees of feeling good and feeling bad and wondering what's happening. No predictions. The prognosis was different, too. When you talk to a surgeon, he always says, 'We got it all!' "
Joyce: "That's the great line." Group laughter . "I heard that, too. That's the first thing I heard when I came out of anesthesia: 'I think I got it all.' "
Baroni: "Yeah, and you want to believe that, too."
Kvarnes, enjoying the dialogue as well as the last bite of his peanut butter, broke in: "Did I tell you about my mother's cancer? It was in 1959--I would have been 43 at the time and with no experience with cancer after medical school. She developed a carcinoma of the bile duct. It was about September when the diagnosis was made. We got the news that it was inoperable. We all broke down as a family. No one said anything to anyone else. She was in the hospital from September to December. No nurse, no doctor, no son, no daughter who is a nurse--nobody said to her that she had cancer. My mother knew it. She never brought it up. I waited for her to bring it up because I didn't think I could. I think I was afraid of some kind of emotional reaction that would be beyond my control. Which was absolutely nuts. My mother was fully capable of talking about it. She didn't think I was. She knew she was dying. And here we had this conspiracy that included the whole damn hospital. No one came to talk with this intelligent woman. And a very gutsy woman who, if she were in a group like this, would be working like crazy to conquer her cancer."
Joyce leaned forward in the chair: "Bob, the surgeon who did the hysterectomy on me came in and talked to me and said, 'I think I got it all.' He never used the word cancer. This is last year."
At this session, as at all of them, references to other people's attitudes about cancer were not an occasion to put down friends or the medical establishment for their inadequacies as much as they were a means for the group to try to make an intellectual advance. They were seeking to push away the inert blob of fear that represents the common attitude about cancer and replace it with the activism of the therapy sessions. Passivity was being singled out for defeat.
Included in each session are from 30 to 45 minutes of guided imagery therapy, with Kvarnes or Chalick as leaders. These are therapeutic techniques designed to evoke the patients' thoughts and feelings about their cancer. In guided imagery, the leader might direct the members (whose eyes are closed and bodies relaxed) to imagine that they are in a pastoral scene--garden, meadow, hillside--and that they meet a wizard (mentor). The "imaging" that follows--what the wizard says, how the individual reacts, what the individual finds as he moves through the scene--is meant to provide usable information to help shape the person's attitude toward his cancer.
On May 13, with every member present and the group in chairs arranged in a circle in front of the office couch, Kvarnes began by asking the patients to limber themselves into a relaxed position. Eyes closed, feet and legs spread forward and bodies sunk softly into chairs. Kvarnes spoke quietly and slowly, spacing his sentences:
"This is called 'The Thread.' And the thread is going to lead you to a sight where you either have some cancer activity or where you want to be sure you don't have any . . . You're going down some long, long stairs . . . A very long descent . . . When you reach the bottom--take your time to reach it--you find a thread line there . . . You pick up the thread and start to follow it through many corridors and rooms before you come to the room where you're going to do your work; that is, where there's some cancer presence or some monitoring that you want to do . . . Don't forget that you have a crystal, and the crystal not only can ward off something fearful but it can be pointed at something and shine some light on it so you can see it better. And if you need to, you can call on a guide, like a wizard, to help explain things to you . . . When you get to the place where there is cancer activity, then you plan some attack on the cancer. You figure out some way to do something about it, either using the crystal or imagining something that calls out to be done . . ."
Kvarnes stopped, and many minutes of silence passed. No one stirred. Eyes remained closed, bodies relaxed.
Then, in a low voice, Kvarnes asked the patients to open their eyes and come out of the imagery.
Baroni spoke. "First I thought I was going down the Dupont Circle Metro, that long stairway. There's one over at HUD, a steep one, too. Then I thought I was going down a coal mine. Eventually I got to this lab or clinic. I found the thread, a green thread, and I followed it. In the clinic, my oncologist was with me. He put the CAT scan X-ray on the wall, looking at it. He said, 'We're not sure if some of the cells look like they're dead. Some look as if they're dormant. We don't want to stir them up because they could become reactivated.' I thought about nuclear waste. What do you do with it? He said, 'If you stir up the cells , they might go somewhere else. Just try to contain them.' I said, 'What about flushing them out?' He said, 'No, just contain them. Some look like they're dead, some inactive. Just wait and see.' "
Baroni finished and Chalick told of his imaging. "I went down the stairs. I was in the basement of the house where I was raised. I kept going into another room that was darker and then finally crawled through some carbony black hole in the wall to a small cave-like room. I was looking around with the crystal. Something's got to be written on the wall. There were hieroglyphics that I couldn't understand. I went to a fourth wall and focused on the words 'stay where you are.' And I kept peeling away layers . . . There was something stuck in the wall, a little piece of marble or ivory, and I had to look under a microscope. There was the image of a tulip leaf on it. I didn't know what to make of that. A little worm came. And I said, 'That may be what's left of my cancer.' I burned it. I don't know how I lit a fire. I just burned it."
Kvarnes took his turn. "I went into a long curved tunnel. It was fairly dark in there, so I was using the crystal to guide myself. Suddenly I came across a great big hulking mass of poorly defined something or other. So I turned the crystal on it. I could see it was just a kind of an amorphous mass. I used the crystal to outline it very clearly. And the whole point of that was to aid the immune system and recognize it's cancer and that one spot on my rib still shows up on the last bone scan. I wasn't burning it with a crystal but was lighting it up so it could no longer be missed."
Gail Polsby confessed that she had trouble getting started. "I couldn't get into it. I got down there but it was all empty. Nothing was there--no cancer, not anything . . . Just an empty cavernous mass. I've got to get out of here . . . My mind just spun around and went nowhere. The problem is more what to do with the mutilation of the surgery rather than the cancer."
Kvarnes broke in. "Maybe that's what we should use as the equation for you in these things. Most of the guided imagery doesn't exactly fit you. You're pointing out what the problem is--somehow accepting yourself as you are now, with all the mutilation that's gone on. Maybe that's what you could be working on. The thread could lead you to something that makes things better."
A Clash of the Minds
The idea of using the sessions--the sharing of information, experiences and feelings, exercises in guided imagery--as a strengthening of the mind, which in turn could strengthen the body in its fight against cancer cells, was important to Kvarnes. But as the sessions progressed, it became clear that the importance was greater for him than for the others.
On May 20, a philosophical clash erupted between Kvarnes and Chalick. The two psychiatrists differed on how the immune system could be affected by information gathered by the brain. The discussion had moments of both clarity and cloudiness.
Kvarnes: "It's not enough to go from the idea that believing--or religious faith or faith-healing--makes an illness go away. There's a gap there. I've got to know how that happens."
Chalick: "There's still a gap anyway. There's no connection that anybody has between this thing that we call thinking and whatever this stuff an illness of the body is.
Kvarnes: "That's a very important part of it. But there is the left brain, right brain organization."
Chalick: "That's a thought."
Kvarnes: "No, it's not a thought. Goddam it, it's definite.
Chalick: "But that still doesn't reach how it goes about . . . You do have thoughts, and whether they may be left brain or right brain, but how they then affect some other part of the body , no matter what you say about chemicals or electrical currents, there is still a gap.
Kvarnes: "The right brain is a pattern forming . . .
Chalick: "Look, I know that stuff. You're going over old stuff . . .
Kvarnes: "That's pattern recognition. I think what we're doing here is pattern formation. We talk to the right brain and the right brain makes a pattern that can somehow be conveyed to the endocrine and the neural system, and that it isn't just wild or that terrible gaps are there. We have all kinds of evidence of that in other areas. You take a basketball player. You go through the steps with him until he gets a sequence for a very tricky shot. At the point where his right brain has taken over and organized that activity, he no longer thinks about it. He goes through the motions step by step. And that's organized by something. That pattern is created by the player, with the left brain coaching. And then it gets converted into a right-brain directed activity."
Chalick: "I think you're on dangerous ground when you just leave it in terms of left brain, right brain . . . All of that's a guess about how it's working."
Kvarnes: "Well, sure."
Chalick: "It's a hypothesis."
Kvarnes: "You have to have a hypothesis."
Chalick: "You have to. That's what I'm getting at. I think there's something Western and culture-bound about the idea that we have to do something about it, and that we have to understand what we're doing."
Kvarnes: "I'm not a Buddhist."
Imagery and Its Influence
The exchange between the two psychiatrists--gentlemanly but pointed--reflected not only a philosophical disagreement but a tension of expectations. More than the four others, Kvarnes is watchful: first of the fluctuations in the cancer's progress, or lack of progress, in the most vulnerable members of the group--Baroni, Joyce and himself--and second of what beneficial role the therapy sessions might be having in those fluctuations.
Kvarnes obviously believes the exercises in guided imagery are beneficial. But as the sessions progressed, he began to wonder whether he was being unduly cautious about the positive news coming from his and Baroni's doctors. Both men had been improving and the improvements were unexpected. "Geno and I," Kvarnes said with warm feeling at the sixth session, "have had rather spectacular reports and I'm a little bit worried about how we handle them."
Kvarnes had learned from blood tests and bone scans that his cancer was no longer the threat to his life that he thought it was two years ago. "We're trying to adjust to this information, individually and as a group," he said. "I don't think any of us would want to stand up and say, 'This is an enormously successful program. Kvarnes has gotten rid of his bone metastasis and Geno has cured his mesothelioma.' But something's going on. And we're at such an early stage in this that I'm both excited and terribly cautious about it. There's no question in my mind that if the change in me is genuine--and there seems to be no question about that--the imagery process has had a big part in it. And the fact that I've taken an active role in my illness has been a big part. I'm no longer victim, no longer helpless. I don't have any uneasiness about calling the doctors with my questions . . ."
This bouyancy was a feeling shared by Baroni, though he is less concerned than Kvarnes about the provability aspect. He told of talking to his doctor about the latest good news. "I called him this week late May and said, 'Let's start all over.' . . . He told me that the other doctors on the tumor board he showed the new results to are pleased, delighted and, quote, surprised. Because there's no known cure for mesothelioma , nothing works and it goes fast--six months, nine months. He said, We're delighted, happy and surprised.' That's the first time he's used these words. I asked him, 'What do I do know? Am I in remission?' 'No,' he said, 'there are still tumors there. But they're not going anywhere. They haven't gone to your kidneys, they haven't gone to your liver, they haven't gone to your lungs, they haven't run through your system like they're supposed to. So you're on hold.' "
The Monsignor's Belief
Baroni is the only one in the group who speaks in religious metaphors about his cancer. The others have an appreciation of his spiritual life, and they listened raptly when he told of going before his old congregation at St. Paul and Augustine. It was during mass, and, instead of a sermon, he led "a healing service" based on guided imagery.
"I asked them to follow me or just listen," Baroni said. "I asked them to relax and close their eyes. Most were older people. There's a great tension between the will to live and the will to die. You've got to have both. You can't say 'to hell with it, I'm going to die,' or 'the hell with it, I'm going to live.' You have to work them both. A lot of these people said, '27 years ago, the doctor said I wasn't supposed to live, and here I am.' Here's a spunky little lady--blind, 94 years old--and she says, 'I'm ready to go any time. Every day I say, 'Lord I'm ready.' So she's dealing with both sides. And other anecdotes: 'The doctor's dead who took care of me . . .'
"I told the people that this was the first time in nine months that I've stood in a pulpit. What's interesting is that I came to this church in 1960. And I said you took me in. It's a black church. I was a stranger. You welcomed me. You healed me. Nine months ago I was in the hospital and didn't expect ever to get out. But nine months later, here I am. I believe in healing, I believe in believing. I want to share smething with you. Close your eyes and relax. Concentrate on your head. Try to feel the blood. Let the blood come down through your hands. Let your hands get warm. Put your hands to your face. Then I took the garden. I went to the house. I went inside. That's the body. And inside the house was the master--the guide, the teacher--and the teacher had a light and said, 'You are the light.' This aching body is still a light. We are created by Divine light and are becoming part of a Divine light. God is within us. And this little light of mine is struggling to survive. We don't have to go anywhere. We have to look into ourselves."
In the group, Baroni was the most expressive about the uplift he received every week, and never mind if his immune system was or wasn't being manipulated into a new toughness. For him, it was plenty merely to have this intimate gathering of friends who had looked cancer in the eye and not blinked.
At the sixth meeting, Gail Polsby, moved by Baroni's accounts of his improvement and his guided imagery sermon at mass the Sunday before, smiled and said to him, "You seem to be a little more full of yourself today." Baroni agreed: "I've been annointed five times. But that's passive. They used to call it last rites. They've changed it to annointing of the sick . . . That's not enough. I need more. What I've learned here is to do these meditations--guided imagery meditations--and to do a combination of the physical and the spiritual. I add the spiritual part to the technique I've learned here. In religious terms, it's a new way of praying, a new way of meditating--of dealing with your health, your healing and your believing. It's something I never learned in the seminary. I've learned from all of you a legitimacy and credibility in terms of guided imagery and the mind and the emotions.
"And if stress and distress and my father's death and a lot of other things may have set me up for my cancer, then you can choose how you deal with yourself when you're sick: You can panic, be fearful, wary, distressed or you go on. You can say, 'I have to learn how to live,' and not let something die within you while you're supposed to be waiting for the end. So you fight against that. I've learned a lesson: The legitimization of the secular knowledge of guided imagery and the religious. My attitude is healthy and perhaps that's helped my body to be healthy. I don't say I know that yet. Later on I might know. They keep telling me that with mesothelmia there are no winners, no survivors."
Facing the Fear
The "they" was never long out of any therapy session. Oncologists, radiologists and surgeons were the experts whose soundings couldn't be muffled. If the attitude therapy sessions were exercises in self-help, they were not, therefore, rejections of the help that standard medicine might offer. The group knew that often enough nothing could be done with cancer patients.
A colleague who had come to the group before I joined--he had been to four sessions--died of lung cancer in early May. His death was discussed. The Thursday newspaper carried his obituary, which Baroni read aloud to the group. Reactions to the death varied. Kvarnes felt frustrated because he wished the man had had more time with the group. Baroni confessed that he often had looked at his dying friend--losing weight, slowing visibly--and saw himself as he might be as his end approached: "Is that how I will look?"
But the death did not alter the agreement that held the group together: that managing one's own cancer ought not to be handed over to the experts when a vast amount of expertise--in one's own mind, emotions and spirit--was available. It mattered to some more than others exactly how that interior expertise was acting on the body. But attitudinal changes were separate from medical changes. No one in the group remotely believes that he has moved closer to the magical "cure of cancer." But they are saying, tentatively, that they are moving closer to discovering a cure for the fear of cancer.