Chapter Twenty-Four

PART SIX

Living with Cancer

Chapter Twenty-four

Living with Cancer

From the earliest human times, wise men and women have concluded that living life skillfully is a high art, perhaps the highest art there is. Like all arts, the art of living is a creative act requiring the development of disciplined skills. And one of the greatest challenges of the art of living is to discover ways to face pain and misfortune. Learning to live with cancer skillfully, therefore, can become a challenge, often bringing with it a valuable new perspective on life.

A young woman named Avis, who attended a Commonweal Cancer Help Program retreat, had been living with recurrent thyroid cancer for many years. When she was first diagnosed with thyroid cancer as a 19-year-old college student, she had been told there was nothing to worry about–treatment was curative. But she suffered a series of increasingly severe recurrences, and her cancer was now at a life-threatening stage. She had undergone a series of increasingly painful medical procedures requiring medications that literally dissolved her sense of who she was for long periods of time.

Avis was a first-class athlete with a wide variety of athletic skills. One of the things that the cancer had taken from her was the capacity to participate in competitive athletics. At the same time, the prospect of more pain and more medical procedures was more than she thought she could bear. During the course of the weeklong program, she came to realize that there was a deep relationship between the courage and stamina that had made her a first-class athlete and the courage and stamina she needed in the struggle that faced her now. She realized that, just as her life as an athlete had been a supremely creative personal act, so her life with cancer called upon her deepest resources.

At some point in an encounter with cancer, many people recognize that what they face involves much more than dealing with choice of treatments and undergoing treatments. For most people who have had a serious cancer diagnosis, even if the treatment has been successful and the likelihood of recurrence is low, life will never be the same again. The art of life under these circumstances involves finding a way to live with the pain and losses that cannot be avoided, finding a way to cope with or even transform the fears and stresses that inevitably come, and finding out whether in the midst of the pain, loss, fear, and stress, anything of value–anything that enriches life–may also come out of all this hardship. The teaching of the perennial philosophy is that out of pain and hardship some of the greatest gains in life can come.

Problems of Living with Cancer

In what follows, I will try to chart a territory that is actually without boundaries or fixed landmarks–the territory of the problems that people encounter in living with cancer. Since every life is unique, a list of common problems is hard to design and harder still to discuss.

Nevertheless, I will try. Below is a list of the most common issues that people have described to me over the past 10 years. I have divided the list into two categories–problems directly associated with cancer and problems in living that may or may not be associated in the patient’s mind with cancer or with its prognosis. This division is similar to, but somewhat different from, the distinction of the biological process of cancer as a disease and the human experience of cancer as an illness, which we discussed in chapter 2. The difference is that here both categories include problems related both to disease and illness, but the second category enlarges the frame of reference so that it involves the human experience of illness in interaction with the experience of other aspects of living.

Problems of living that relate to the cancer itself and treatment for it include:

1. How does one respond to the cancer diagnosis?

2. How does one face the difficulties of choosing between treatments?

3. How does one cope with the trauma of facing and undergoing treatment?

4. What is your relationship to your doctor and how do you deal with problems in communicating with him?

5. How does one live with the possibility of recurrence, or face a diagnosis of recurrence?

6. How does one live with the progression of cancer, either as shown on diagnostic tests or as physically experienced?

Problems of living that may or may not be linked by you to your cancer include:

1. Current relationships: with children, with spouse or partner, with parents, with friends, with co-workers; problems with sexuality and intimacy.

2. Past relationships: childhood unhappiness, trauma or abuse; past problems with parents, spouse, or partner; grieving the death of someone close; and grieving separation or divorce.

3. Work: attitudes of co-workers, attitudes of management, your satisfaction with work, keeping your job to keep insurance, job stress perceived as part of what contributed to cancer, and loss of cherished work.

4. Finances: loss of job, loss of income, loss of insurance, and dealing with insurance.

5. Daily patterns: restrictions in the ability to care for yourself or family; restrictions in exercise or other health habits; restrictions in daily pleasures–food, drink, smoking; and restrictions in mobility and energy.

6. Environment and housing: disruptive change of residence, separation from friends, living in a stressful or disliked home, and feeling one should live in a different home.

7. Community: sense of isolation from friends and interactive community, loss of community due to relocation, living in a disliked or stressful community, and feeling one should live in a different community.

8. Creative life: restriction or loss of capacities in areas in which you feel most creative or truly yourself.

9. Psychological: morale, self-esteem, capacity to think clearly, control of emotions, changes in values and perceptions, and living with a life-threatening illness.

Cancer Is Not Always the Greatest Problem

It took me some time after I started counseling people with cancer to realize that cancer is not always experienced as the greatest problem facing a person with cancer. Someone may be carrying a greater pain than the cancer, such as the death of a spouse, a divorce, a childhood trauma, the loss of a job, or some other issue that takes more time and energy to deal with than what might appear from the outside to be the central life issue–cancer.

I spoke earlier about the physician who came to Commonweal with a life-threatening recurrent bladder cancer that was not at all his major concern. What preoccupied him was grieving for a wife he had lost to a degenerative nervous disease. In order to nurse her he had deliberately chosen to forgo curative surgery, which would have kept him away from her during her last months, and chose a course of treatment that made it probable he would die of his cancer. When he came to Commonweal he had no fear of death and was, for the first time in his life, considering the possibility that he might be able to rejoin his wife after death. The loss of a mate or the loss of a child can leave a person with a permanently altered perspective on his own death. For some people, like this physician, death can in fact be experienced internally as the opening of a gate to a release from this life–and possibly the gate to another world–which they are ready to walk through.

The fact that other problems in living may be more important than having cancer is of great importance to patients and those who care about them in considering ways of healing. The first implication for any health professional, family member, or friend who wants to help a person with cancer–or indeed for the cancer patient himself–is that the most effective help one can provide may be addressing a problem that has little, if anything, to do with cancer.

Even in the more common situation where other problems are less important than cancer, help with the other problems of living may be more feasible. Focusing attention on the soluble problems of living can reduce the stress on the cancer patient, giving him more energy to cope with his cancer. Since stress may, as we have seen, actually be a factor in the development and progress of some cancers, addressing problems contributing to stress may have an effect on the course of the disease.

Cancer as a Turning Point

In addition to the benefits of helping heal specific problems, there is an even greater benefit in identifying “metastrategies” that help a cancer patient shift his relationship to whole classes of problems of living. These metastrategies often involve the recognition by the patient that cancer can represent what Larry LeShan calls a “turning point.” The cancer patient can discover his own ways to use the shock of the turning point as a signal that he now has permission to undertake a very fundamental reevaluation of what is important to him in life and what has become less important.

For many patients, this reevaluation happens spontaneously; they will say that many problems that used to preoccupy them no longer seem important; that many relationships that were difficult for them have healed; and that reassessment of their life priorities has in many respects improved their lives, giving them more strength to deal with the realities of the disease and treatment.

Most frequently, a change in life priorities following a cancer diagnosis is accompanied by what patients describe as a shift in consciousness. The cancer patient characteristically describes the change as one that brings a broader, higher, or more inclusive consciousness. We discussed this shift in chapter 9 on spiritual approaches to cancer. Whether or not one identifies this shift as spiritual is unimportant; the important thing is to recognize that the shift in consciousness is the essence of what makes the old problems in living accessible to resolution.

This shift in consciousness is different from a simple reevaluation of what matters in life. Often, the shift takes place shortly after the cancer diagnosis–or after diagnosis of a recurrence–and literally makes the world look different. As many people have described the experience, it is as though scales had fallen from their eyes and they were seeing the world absolutely fresh for the first time. They experience nature as radiant, family and friends as precious, life itself as sacred. This state of nonordinary consciousness encourages the reevaluation of one’s life priorities. Then, when treatment achieves a possible cure or lasting remission, often the experience of nonordinary consciousness fades and the person moves back toward an ordinary experience of life. While the new orientation toward life priorities may survive the end of the crisis period, many patients mourn the loss of that nonordinary consciousness that came during their time of crisis when life seemed sacred.

In cases where the cancer recurs and the patient is told that there is no known cure, then the heightened sense of consciousness frequently returns. It may stay as long as life seems to hang in the balance, but if another lasting remission is achieved, the heightened sense of consciousness often subsides again.

Although some people are able to sustain the heightened state of consciousness, it usually goes up and down in waves on a continuing basis for the rest of their lives. To keep it steady usually requires developing a deep practice of meditation or participation in some psychophysiological discipline that continually renews the sense of life as sacred.

The fundamental point here is that, in this state of nonordinary consciousness, not only do priorities shift but the experience of problems in living can be transformed. The transformation does not always mean that problems weigh less heavily. When a loss or series of losses related to the illness is depressing in ordinary consciousness, it may even be experienced as tragic in nonordinary consciousness. The tragedy may be deeply experienced and expressed in tears and prolonged grieving. But it is more likely to be worked through precisely because it is experienced more profoundly.

As I have indicated, such changes often happen spontaneously. But for others who feel “stuck” in misery, anxiety, and depression with cancer, the skill of a friend, family member, or therapist may help them in finding ways to explore what a shift in consciousness might bring. This is a delicate issue, and often best left to a skilled psychotherapist experienced in work with people with cancer, through imagery, meditation, hypnosis, or other approaches to altered states. The important fact for the cancer patient is to recognize that deep and life-changing insights may lie just below the surface of anxiety, fear, and depression. If one is able to identify a process for accessing these insights, the experience of the illness and the capacity to resolve many major life problems can shift fundamentally.

Even when the shift in consciousness has taken place spontaneously, it is important to recognize that it can often be deepened by the use of some of these same approaches–such as meditation, imagery, or hypnosis–that can initiate access to nonordinary consciousness when people are stuck in fear, anxiety, or depression.

Problems in Relationships and Community

Probably the most common problems that cancer patients describe are those in relationships and community, past or present, with parents, children, spouses or partners, other family members, co-workers, and friends. The recurrent themes are not unique to people with cancer–rather, they are the themes of relational problems in modern life. But they have a special quality for the cancer patient because he often wonders whether there is some connection between the relational problem and the development of the cancer.

Childhood

Let us start with the issue of having experienced abuse, physical or psychological, as a child. It is well documented that a large proportion of American women have experienced some significant sexual abuse as children. This experience often has profound and lasting effects on psychological development and relationships for the rest of their lives. While the issue of whether tumors occasionally develop in some organ systems as a result of psychological or physical trauma to those systems remains highly controversial scientifically, I have seen too many women who have developed reproductive system cancers following childhood abuse to have any personal doubts that the correlation is sometimes real. I have met a considerable number of women who developed cancer in their reproductive systems who also personally attributed part of the development of these cancers to their experience of having been sexually abused as a child. That history of traumatic sexual abuse, in turn, made the experience of invasive and painful treatments for cervical or ovarian cancer even more traumatic.

Janis came on a Cancer Help Program retreat with ovarian cancer. She had experienced repeated sexual abuse during childhood with her father. She had not been able to tell anyone about the experience. She had made several efforts to tell her mother who denied that it was possible and threatened to punish her if she repeated the story. There are no scientific studies that can tell us whether the abuse was related to her cancer, but the important point for healing work was that she attributed her ovarian cancer in part to the experience with her father. During the course of the week, as she entered states of nonordinary consciousness through the repeated daily sessions of meditation and yoga, she experienced more deeply than she had before the memories of the abuse and her sense of how the ovarian cancer was a kind of repetition of the abuse. As she explored this great tragedy in her life, the experience of living with cancer began to shift. Precisely because she was able to put together memories and feelings and words, and to link these experiences deeply, an emotional healing took place in the face of the tragedy.

Sometimes the abuse is not sexual but psychological. The child received from one or both parents what Rachel Naomi Remen calls “don’t live” messages. The child was told by the parent that the pregnancy was a mistake, that she was an unwanted child, that the parents had hoped for a boy, or that she was somehow wrong or disappointing in who she was in the world. Often, the child learned to suppress who or how she naturally was in order to please the parent, and developed a whole life pattern based on pleasing others and paying no attention to her own development or needs. Often a cancer diagnosis is the turning point that gives permission for the first time to explore being herself and what that would mean.

Sarah came on a Cancer Help Program with a recurrent cancer of the tongue. In the course of the week she remembered that when she was a boisterous and exuberant child, her mother used to pay her to be quiet for a while. She was told to hold her tongue. Again, no scientific studies can tell us whether this experience is related to the development of the tongue cancer. But Sarah experienced a connection. In the course of the workshop, she concluded that the recovery of her voice–in the sense of learning to say what she was feeling in present relationships instead of staying silent as she had been taught as a child–was an essential part of her healing.

Intimate Relationships

There are an infinite variety of ways in which marriage or intimate partnerships can interact both physically and symbolically with a cancer diagnosis. The stress of a bad marriage can be suspected of playing a part in the development of cancer, and the patient often faces a difficult decision over whether or not to stay in the marriage. A stressful divorce or separation, too, is frequently suspected by patients of playing a role in the development of their cancer.

Then come the issues of what the cancer diagnosis does to the marriage or relationship. In some cases it weakens or destroys it: the spouse cannot accept the cancer, the spouse (or patient) cannot rebuild intimacy and sexuality, or the marriage ends. In other cases, it strengthens the relationship, and problems that plagued both partners become resolved.

The end of a relationship following a cancer diagnosis is not necessarily negative. Sometimes a cancer patient recognizes that the cancer diagnosis has prompted a process of rapid internal growth and change within herself and that a relationship which had previously been tolerable–though rarely fulfilling–simply no longer provides an environment for the intensive healing work she has to do.

Cynthia was an artist from Florida who had raised three children to adulthood and emotionally supported her businessman husband throughout his career. After she developed metastatic breast cancer and had a mastectomy, their intimate life ended and her husband was uninterested in therapy or in any sustained effort to re-create a sexual life together. With great courage and determination, Cynthia undertook a process of exploration of complementary as well as mainstream therapies, changed her diet, entered psychotherapy, came on a series of Cancer Help Program retreats, and fundamentally reinvented her life. She then discovered that her husband had been having an affair for a number of years. They divorced, a development that Cynthia found deeply painful but also liberating. Cynthia has now lived with her cancer for many years, leading a rich and fulfilling life.

Children

Problems involving children and cancer are often deeply poignant. Frequently, a young mother with a history of breast cancer in the family, herself now diagnosed with breast cancer, faces both the possibility that she may not live to raise her daughter and that her daughter may be at high risk for the same extraordinary suffering that she is undergoing. The mother often feels the pain of the child watching her go through this experience, and the pain of recognizing that the daughter is at risk of this same incredible assault on her self and her femininity that the mother is facing. If the prognosis is serious, the parent is often as concerned with the effect that her death will have on her children as she is with facing death herself.

Jennifer was a computer programmer with metastatic breast cancer who came on a Cancer Help Program retreat. She had two children, a daughter age 5 and a son age 7 years. She was deeply involved in raising them. She had a good marriage, but her husband had lost a job shortly after the birth of their second child and she had had to return to work to support the family while he went through school to retrain himself for another position. He stayed home often, studying and caring for the children, and she felt bereft at having to work during these precious years. After 3 years at work supporting the family and agonizing over the time she was missing with her children, she developed breast cancer. Her husband had just finished school and was hired for a new job. He took over supporting the family and she returned to be with her children. A year later the cancer had metastasized. She came on the Cancer Help Program deeply grieving the possibility that she might not live to be with her children for the rest of their childhood, and that she had missed precious years already. She also faced the latest version of the exquisite dilemmas with which modern cancer treatments confront patients: she was being told that a bone marrow transplant was her “only hope.” The procedure would not be reimbursed by her insurance, would cost $125,000, which she and her husband simply did not have, would be many times more difficult than the chemotherapy and radiation she had gone through already, and had not yet provided any significant evidence that it represented a cure for metastatic breast cancer. Nonetheless, she saw it as representing the best that scientific medicine had to offer in her situation.

Friends

Friends frequently pose a different set of problems. The most common dilemma is the difficulty the patient has with how friends react when they learn she has cancer. Many cancer patients describe how some friends simply cannot deal with the cancer and distance themselves; how others want to help, but act or speak in ways that are not helpful; and still other friends come forward and are of true assistance and support. The ability to educate friends concerning how they can actually be of most help is an important survival skill for people with cancer. There are many approaches to defining what helps and what does not help and communicating those facts to friends.

Sally was an older physician active in social circles in her southern community. She remembers being invited to a dinner party and discovering that all the other guests were offered drinks in elegant glassware while she was served her drink in a plastic cup–apparently on instructions from her hostess who had a phobic fear of contamination by “cancer germs.”

Nancy was an interior decorator whose clients came from her wide circle of socially active friends. Her career, begun in middle life, was a very rewarding part of her life and she looked to it for support in the face of her cancer. Then she found that a number of friends who had discussed work with her had turned to other interior decorators out of concerns about whether or not she would be able to complete their projects or in distress at having to meet face to face with a friend with a serious cancer.

Another common problem in our highly mobile society–a problem that again particularly affects women–is when a woman has moved (often with her husband for career reasons) and develops cancer after several years in a community that she does not like as much as her old community and where she does not have a strong support network. Here the problem is not friends doing or saying the wrong things but the lack of friends close by who can really provide support.

The other side of these common problems is the frequency with which people with cancer report positive changes in many relationships. Their marriages may be better, their families closer, and they often experience extraordinary support from friends.

George was a carpenter, creative and athletic by nature, who noticed while running an increasing fatigue and shortness of breath. He was diagnosed with lung cancer and found that mainstream medicine had nothing to offer him. He undertook a very vigorous program of diet and complementary therapies, and found his already spiritually inclined life further transformed. But he also described himself as discovering that he was living in a circle of love created by a community of deeply supportive friends. He lived a deeply fulfilling life for several years and died in what he and his family considered a state of grace.

An experience like cancer tends to mobilize both the supportive and the negative potential in the social networks that surround each of us. The skill is in recognizing how critical relationship questions, positive or negative, can be in the face of cancer. Often help can be brought to bear by friends in ways that can transform the quality of life. Some clinicians and researchers would hypothesize, for reasons we have discussed, that the healing power of community may affect the course of the illness as well. Recall the studies reported in chapter 10, that people who have supportive networks have less mortality from all causes than those who do not, and specifically that women with metastatic breast cancer and strong social support tend to live longer than women with less support.

Problems in Work and Creative Life

Freud said that the essence of life was “love and work.” Family and friends represent love, but what of work? For many Americans, work is profoundly central to our identities–our sense of ourselves. While true for both men and women, this is particularly true for men, who often have few meaningful relationships outside of work.

So work has many complex relationships to cancer. Often a cancer diagnosis follows a devastating disappointment in work life, and many people who have experienced this attribute the cancer in part to the stress of that disappointment. Cancer diagnoses also often follow retirement from a job that was central to a person’s identity and life purpose.

When cancer is diagnosed, a new set of work-related problems may enter the picture. Some people are unfairly dismissed from jobs because of cancer and cannot find new positions or medical insurance because of the disease. Some are kept in their jobs but denied promotions or new opportunities in the organization. Still others find the primary problem is the reaction of co-workers to their illness–a reaction that they cannot escape in the work context. Some, who were never satisfied with their jobs, who believe the stress or disappointment of the job contributed to the development of the cancer, and who further believe that it is bad for their health to stay in the position, nevertheless feel they cannot leave because they need both the income and the insurance. This is a particularly painful dilemma.

Celia was a librarian from New York who loved her work in libraries that directly served the general public. On her return from a year abroad, she took a job with a specialized scientific library because it was the only position available at her advanced level of management skill and training. Following a painful divorce, she developed breast cancer. The diagnosis sharpened her awareness of how wrong her current position was for her, but her medical insurance and income seemed critical to her survival. She was caught in a job she believed was contributing to her illness.

Then there are work-related problems that result from physical or psychological changes that make it difficult for the cancer patient to continue to do the work that he enjoys–and sometimes the work on which his livelihood depends. Even if the financial situation is workable, the loss of capacity to function in a satisfying way–to be needed and useful–can be a great loss.

On the other side of the coin, a cancer diagnosis often gives people the courage to make work changes that they would not have risked before. With a sense that finding a satisfying work and creative life might really matter both in terms of quality of life and potentially in the course of the disease, some people transform existing work situations, find new meaning in what they are already doing, or leave work that does not fit in their lives, sometimes striking out in search of work that affirms them.

Sarah was a graphic designer from Washington who came on a Cancer Help Program. When I asked one of my favorite questions, what would you do if you did not have cancer and could do anything you wanted?, she responded: “I would leave my job, buy a van, travel across the country seeing friends, and then return to Virginia and found an artists’ colony.” I asked her what was keeping her from doing that. She considered the question for several days and concluded that she would leave her job and travel. She proceeded to do so, buying a van and traveling across the country as she had planned. She has not returned to Virginia yet to start an artists’ colony, having stopped in California to attend art school, but I am waiting to hear the next chapter.

Living with Cancer

We could go through each of the areas described above in which problems in living with cancer come up and describe some of the huge variety of experiences that different people with cancer have. In the areas of love and work, the preceding two sections give at least a sense of what such a comprehensive review would reveal.

If living is an art, living with cancer often represents a challenge, whether it is accepted or not, to refine that art so that one can cope with difficulties scarcely imagined in the everyday world in which most people live.

To describe life with cancer as a high art does not mean that the challenge is necessarily to accept cancer with grace, or to achieve a level of consciousness where one is not touched by the vicissitudes of the illness, or any similar superficial ideas of what represents the art of life.

Some people are led, by their natures, to a beautiful grace and courage in the face of cancer. Others are led to an equally beautiful and honest expression of their fear, their grieving, their anger, their pain, and every other experience that comes to them.

One of the greatest lessons of the Cancer Help Program is that if you spend a week with a small group of people with cancer, you come to see and appreciate the beauty of each individual way of encountering cancer. Cancer directly encountered tends to strip one down to honesty and truth about one’s life. Truth about a life, no matter how gnarled and twisted the life may be, makes that life intrinsically beautiful. The old Hasidic Jewish masters had a tradition that the light that came into the vessel of a human being who had sunk to the furthest reaches from God was of a power and quality that in some ways could not be matched by the great spiritual masters. God created sin, they reasoned, so that the return to God through repentance from this fallen state was possible, and so that this special light could be present in the creation.

That is a poetic way of saying what I have just said about how cancer directly encountered in any life can bring out the light in that life, and so transform lives that many cancer patients may have believed were hopelessly far from any creative or redeeming potential.