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Cancer - Coping and Hope
Diane Behar, Isadora R. Rosenbaum, MA, and Ernest H. Rosenbaum, MD

One Patient's Way of Coping

An Essay on Hope

One Patient's Way of Coping
Diane Behar
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I have been treated with chemotherapy for over six years and am now on my fifty-fifth course.

My current treatment is an experimental infusion that lasts 15 days each month. Almost immediately, I experience a nearly imperceptible ebbing of my physical stamina and soon I prefer to walk rather than run, take an escalator instead of the stairs, sit down rather than stand. My life moves into slow motion. I gradually witness a change in my personality and the way I react to people and situations. What makes this experience so difficult and frightening is the loss of control that takes place--a transformation from a fully active and vital person into someone who can barely sit up and function effectively, which is overwhelming and disheartening.

Somewhere inside the deepest part of me, my truest self hides out under cover, and tells me that all of this is temporary and that I must just wait out these drug-induced episodes. This kind voice, along with my unwavering faith in God, enables me to conquer and think somehow I will be able to see my way into the clearing. And so I go on.

1. I try to live day to day. I focus my thoughts in the present tense and try to deal with matters close at hand.

2. I make myself stupid and I try not to think too much about the implications of what it means to have advanced cancer. Instead, I concentrate on concrete and practical things.

3. I try as best I can to compartmentalize the illness and not give it free rein over my existence. I perceive it as unwelcome and boring.

4. I live in a constant state of denial and keep my mind off the disease as much as possible.

5. I surround myself mostly with people and situations that bear no relationship to the illness.

6. I avoid reading or listening to too much about cancer or involving myself with people who are also fighting the disease. Although I am aware they can be beneficial and therapeutic, I avoid support groups in order to prevent myself from allowing any new fears and anxieties about the illness to enter my consciousness.

7. I internalize a belief system that everything I am going through is temporary and will come to an end: I say to myself that in spite of everything, everything will be all right.

8. I stand up to death with a courage I myself do not comprehend, and I do not permit myself to give in to a fear of dying.

9. I acknowledge that it is impossible for anyone to feel like a normal person after living with this illness for so many years, and accept the fact that it's okay to feel crazy and alienated some of the time--or even much of the time.

10. I remind myself that no one knows when their last day will be and that, so far, I have lived longer than many people predicted. I then think that maybe I'm doing something right after all and decide to continue to follow my prescription for coping.

An Essay on Hope
Ernest H. Rosenbaum, MD and Isadora R. Rosenbaum, MA
Reprinted from Inner Fire, Your Will to Live
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If you or someone close to you is living with an illness or the debilitating results of an accident, you will undoubtedly empathize with the thoughts and emotions expressed by others who have similar experiences. Their depression, anxiety about the future, and fear of suffering and dying are familiar to all of us, but so are their efforts to seek knowledge about their condition and to regain control over their lives.

In the process of reestablishing personal autonomy, these individuals accepted responsibility for their physical and emotional well-being. They recognized that their attitude toward their illness and, by extension, the way in which they portrayed it to others would determine how friends, family, and colleagues would react to them. But they chose to consider this reminder of their mortality as a wake-up call that led them to reassess their values and to either confirm or change their way of life. Each of them nurtured old relationships and developed new ones; each lived life more fully while learning to live with illness. Each of them found hope.

The same opportunity to acknowledge our mortality and examine our priorities is available to all of us the temporarily healthy and those with illness. David Spiegel, MD questions--What is important to us? How do we want to live the rest of our lives? If we discover behaviors or habits we wish to change, we are free to begin experimenting in that direction. We too may start to take risks, open our minds to other modes of thought, take a trip or a class, and make new friends. Anyone who goes through this process will undergo permanent, positive change and will have begun to nurture the will to live.

Although we cannot precisely define the will to live, we have identified the following attitudes and behaviors common to those in this book as well as to other patients observed over many years of practice:

- They live in the present. They know the past cannot be changed, but they also know they have the capacity to influence the quality of today and tomorrow.

- They accept their new problems and attempt to solve them through introspection, understanding, and sharing.

- They set reasonable, achievable goals.

- They consciously try to downplay negative emotions and to focus on feelings of love and hope.

- They surround themselves with supportive friends and family members.

- They actively search for ways to help others.

We, as care givers, consider the first five attitudes and behaviors to be essential. Those who practice them are taking responsibility for their illness and ensuring that their needs are met. The sixth represents a principle we have long recognized as vital to a fulfilling life: Try every day to help someone else! When our own needs are met, we are emotionally free to give to others. For (one patient), what was important was smiling at passersby; for Z it was giving an unhappy child a hug; for M , it was sharing the joys and sorrows of a friend. As a result of their suffering, these people had something special to give. You, the reader, also have something special to give to others as a result of the sensitivities you've developed through your own suffering. You too can reach out, relieve loneliness, give hope.

Of all the ingredients of the will to live, none is more essential than hope. But hope is relative: One person may hope for the fullest possible remaining life; another may hope to live until a special holiday or a family reunion; still another may simply hope to avoid suffering.

Doctors can contribute substantially to a patient's feelings of hope not false hope, but realistic hope. When a patient asks, "How long have I got?" some physicians will respond, six months, a year, two years, and quote clinical statistics for that person's disease. What these physicians often forget to mention is that statistics are averages, compiled from survival data on a great number of individuals, some of whom obviously lived much longer than the average, and others a much shorter time. As many of the individuals in this book demonstrate, it is impossible to predict any person's longevity. Even after a patient has begun a particular therapy, it takes time to determine whether it will have the desired effect. But even if it fails, another one may be highly successful.

Hope may indeed be one of the elements that enables a person to live longer than medically anticipated. However, the opposite is also true. An extreme lack of hope can have the same effect as the phenomenon called self-willed death or bone pointing, observed among Australian Aborigines and in other South Pacific cultures. In such cases, a tribal witch doctor casts a spell similar to that observed in Voodoo (in certain African or South American tribes), causing the victim to suffer paralyzing fear, withdraw from society, and die within a short time. Of course, the witch doctor can only be effective if the potential victim believes in the power of the curse. In the same way, a person with an illness can be adversely affected when doctors and nurses project a sense of hopelessness, or when family and friends are unable to hide their fears. (Paradoxically, such people are often projecting concern over their own mortality, not that of the patient!)

Clearly, realistic hope is a life force in and of itself. If you are dealing with a serious illness, you may often feel exhausted, overwhelmed by never-ending problems, ready to give up. Yet, a little hope, a remote chance for survival, or a small improvement in your condition can give you the strength to carry on.

In conclusion, the will to live both defies definition and has many definitions, as demonstrated by our contributors. We can only describe common behaviors and attitudes among those who have it, and acknowledge its wondrous power. People who exhibit a strong will to live appear to have strong bonds of friendship and love. They also show a determination to meet misfortune head on to accept what has happened and find a way to cope. Part of this process involves finding out everything they can about their condition and treatment alternatives and discussing these facts with their doctors and those close to them. They certainly reexamine their priorities. Most important, perhaps as a result of the foregoing, people with the will to live are determined to live life to the fullest, regardless of the actual timespan.

Finally, most of us do not discover the great, untapped force of the will to live until we are faced with an illness or other crisis. Yet we all have the ability to unearth its potential. We hope that the stories of the courageous people in this book will inspire you to delve into your innermost being and live every succeeding moment from your mind and heart.

You climb a mountain, edging slowly upwards. Rock by Rock
Step by Step one at a time.
From one point to another up the mountain.
From one height achieved to another.
To live with hope is a reflection on our attitude and perspective of life. To rebuild our foundation of hope we need the courage to live. How we live and what we do with our lives is our choice and can be within our control subject to fate and good fortune.

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