August 30, 2010
Finding Your Way Through Cancer - Introduction
Andrew Kneier, PhD
A woman with cancer once told me she found herself in a new world--a world where the sun, with its warmth and light, was eclipsed by something called cancer. The sky was gray like an overcast winter evening. She felt disoriented and lost. It was a world of cancer treatments, cancer anxiety, cancer dilemmas, and cancer challenges. Her former life was slipping away. She had embarked on a perilous new journey, she said, with no road map to guide her, no sure footing, and no confidence that she could make it through. Seeing her from the outside, you wouldn't know that she was in a new world. The sun was still in the sky, shining above her. But inside her mind and heart, a troubling preoccupation had set in. There was an in-your-face aspect to all the questions and anxieties that came with the news that she had cancer. Each morning her first thought was about cancer, about what to do and what would happen. Her dreadful thoughts would come and go like the tide of a dark ocean. This was her new journey, one defined with unrelenting uncertainty about her future existence.
The essays in this book are addressed to people in her situation. Like:: many people touched by cancer, perhaps you find yourself in a world like hers, launched against your will on a similar journey of unknown destination. Perhaps your suffering is similar as well: the suffering of anxiety, uncertainty, and the pressure to make the right moves on confusing terrain. You probably have taken the first steps and are now continuing to make your way as best you can as you confront one challenge after another. My aim in these essays is to help you along and help you through. We'll see if I can.
I will address you personally, assuming that either you are currently dealing with cancer or were treated for cancer some time ago and are now suffering from lingering side effects or the uncertainty of whether the cancer is gone for good. Whatever your situation may be, I believe you are suffering in your own personal ways and that the reality of your suffering is what led you to this book. The suffering that cancer causes is our starting point. Underneath this suffering is your basic humanness. That is what makes you vulnerable to suffering in your body and mind, and what gives you a tenacity of spirit to bounce back and create meaning. Suffering has power, but you have power too. Your suffering happens to you, but, in some sense, you happen to it. You do not have to endure it passively or sheepishly.
Cancer causes people to suffer physically, emotionally, and spiritually. Your body can become a kind of battleground, with cancer on one side and medical treatments on the other. You are in the middle, and cancer and the fight against it can take a heavy toll. Often this physical suffering can overshadow everything else. But cancer also causes you to suffer emotionally. At its worst, it can feel like a tidal wave of fear and sorrow, of daunting challenges and impossible dilemmas, a tidal wave that drowns assumptions about the future--assumptions and plans that you used to make without a second thought. Cancer also throws a wrench in the works, in the precious patterns of your daily life and in the execution of plans and projects. We might call this the suffering of life disruption. And there can be spiritual suffering as well. You may try to make sense of your illness or search for a hidden reason or higher purpose behind it. The God of your faith and devotion may now seem silent, distant, and indifferent.
Much of the suffering that cancer causes is just plain pressure--the pressure or burden to get the right treatments, have the right attitude, and do the right things to maximize your chances. If your cancer progresses, you may blame yourself for not doing enough of the right things, and you may have the nagging, troubling feeling of letting others down. Your cherished relationships can suffer with strain and misunderstanding, and of course your loved ones have their own suffering to contend with (caused by your illness, creating guilt in you). You hate how your illness affects them, and you want to spare them. For their part, they want to be positive for your sake. Thus you may end up protecting each other from how you really feel. The closeness between you can suffer because of that. All of this and more is part of the package, part of the suffering caused by cancer.
For many people, there is a jolting demarcation--of their life before cancer (BC) and after diagnosis (AD). It changes you forever. I have heard that countless times.
Too often the suffering cancer causes is minimized or trivialized as patients are told to keep a positive mental attitude. A positive attitude can help tremendously, but by itself it cannot cancel out your suffering. You need more than that to comfort and sustain you and to see you through. In these essays, I hope to offer more than just the encouragement to stay positive. I hope to help you find ways to honor and embrace your suffering as worthy of honest acknowledgment, attention, and respect.
As you probably know already, people who care about you tend to emphasize the positive or encouraging aspects of your diagnosis, treatment plan, test results, and so on. This is well intended, of course. But in the process, it can gloss over or downplay the worrisome or upsetting aspects, causing you to feel that you should not be too upset--perhaps not as upset as you really are. For example, if your scans are clear, someone may say that your cancer is behind you now, and that it's time to get your life back. You may know that the other shoe could drop at any moment, and if that happened, you'd be staring death in the face. This is the reality that you are living with, day in and day out, and it may seem that others don't get it.
I think we should call a spade a spade when it comes to the inherent suffering that cancer causes. It is good, I believe, to face up to things the way they are. It is good for others to see, and for you to know, that you have valid reasons for how you feel.
When I discuss your emotional distress in the pages to follow, I want to do so in a way that validates it and helps you to understand it more fully and deeply, in all its dimensions and nuances. You may wonder what benefit can come from that. When you were a child and skinned your knee, for example, did it help if there was a caring adult around who knew that it hurt, who let you cry as much as you needed, and who just held you until you were ready to be on your way? And what kind of help was that, if not the help of feeling that your injury was real, your tears were valid, and comfort was at hand for as long as you needed? You were helped to feel these things about your injury because someone else was there to validate the reality of your experience. Perhaps this person also knew the context of this injury, how it came on top of some other recent hurt. When that was acknowledged, you may have cried even more, but felt even more understood and better after this harder cry.
Although we start with suffering, we need not end there. I mentioned earlier your tenacity of spirit. You have immense resources inside yourself, and hopefully all around you, to respond with compassion toward yourself and with power toward your suffering. Perhaps you have heard of Viktor Frankl's book Man's Search for Meaning. Many of his fellow inmates in a Nazi concentration camp were able to turn their suffering into a personal triumph through a strength of will to endure unimaginable brutality and to refuse to give in or give up. Think for a minute about whether this idea might help you--the idea that you can turn your suffering into a personal triumph by virtue of how you relate to it and what you do with it. Your suffering is physical, and in that sense it is what it is. But the emotional impact is not a given, independent of your thoughts and attitudes about it. I am thinking of a woman who suffered horribly by losing a breast, being burned, being poisoned, and losing her hair. But she felt proud (rather than ashamed) of her bald head and scarred body because it showed the price she was willing to pay in order to live. Her suffering did not define her as a pitiful creature. It did not have that power over her. She was the one who dictated the meaning of her suffering, not the other way around. The same is true for you. You are in charge of what things mean.
Cancer can do hideous things to your body, but you can be in charge of what it does to your soul or inner self. You can be scared but not intimidated, singled out, or victimized. It is time for your best self to come forth and to sustain you through all the physical horrors that cancer can dish out.
It may be presumptuous to say I want to help. After all, you are the one dealing with cancer. I am just a psychologist--but one who has years of experience listening to thousands of people with cancer describe their suffering and the dimensions of it that are private, subtle, and often insidious. I have been moved, inspired, and educated. I have learned about common dilemmas, common fears, and common psychological struggles. I have discovered ways of thinking about and working through these issues. I am grateful for all I have learned. If there is wisdom in these pages, it comes from ordinary people like yourself who have made this journey before you. My goal now is to share this wisdom, passed from them to you. People with cancer have also shown me the phenomenal internal resources that reside in our nature for coping, resilience, and finding meaning. I read about this in college, but until I had the privilege of working with people who had cancer, listening to them, and observing their personal power in the face of suffering, I had no clue really, no real understanding or appreciation of what we are made of. The fairy tale about turning straw into gold speaks to a capacity in the human spirit that I have witnessed firsthand.
I have also learned firsthand about the unshakable fear that can grip you when you first hear you might have cancer. This happened to me in my late twenties. Fortunately, I had a therapist to help me through this horrible time as I went from one test to another. It turned out to be a false alarm. I then became a therapist myself with the hope of helping others as I had been helped.
In these essays I will also draw on what I have learned in my studies in psychology, philosophy, and religion. Before I became a psychologist, I was on the road to becoming a professor of religion, and I was especially interested in the philosophy of religion. Although that doesn't make me an expert, my experiences as a therapist have taught me how these disciplines can be relevant to people who are dealing with cancer. From philosophy, I know the importance of perspective, of taking stock of the bigger picture, as we also take stock of our own plight and the nuances of meaning it contains. From theology, I have learned about the importance of one's religious beliefs or spirituality in dealing with human suffering and adversity.
Each essay in this collection stands on its own. You can read them in any order you wish. You might just read those of particular interest to you. That would be fine. My aim is to help, not to burden you with more reading than you feel ready to tackle at this time. To help you decide which essays are most relevant to your personal situation, I offer the following synopses of what the essays are about.
Cancer and Your Life Story
In our minds, we all construct the story of our lives based on our life experiences, both good and bad. When we think about the meaning of our lives, we are thinking about the meaning of this story. When cancer enters, this story is changed. A new chapter begins, and its meaning will stem partly from your life story up to that point and partly from how you respond to your illness. Whatever meaning your illness carries, it will have an effect on your emotions and behavior. Your perception of a negative meaning behind your cancer (such as punishment for things you felt guilty about) can make you pessimistic and depressed. I give two case examples to illustrate this point. In each case, once the person saw how his or her life story was creating a negative meaning, they were able to respond in more positive ways and thus create a more positive meaning. How do you see your illness? Is it consistent with a negative theme in your life story or does it offer an opportunity to change your story in positive ways? That's what this essay is about.
Cancer is a family illness in the sense that it disrupts family life and causes emotional upset in each family member. Many families seem to conspire, in a way, to keep the lid on, protect each other emotionally, and carry on as before. Although well intended, this approach can get in the way of a deeper emotional closeness within a family. This essay takes up the fear, sorrow, and guilt that can occur for all family members, and how these emotions are often handled in families. I also discuss the difficult issue of what children should be told (or not told) about a grown-up's illness and some principles that apply to the content and timing of these disclosures.
Learning from Your Emotions
Cancer has an emotional impact on everyone. Although it may seem that one person's emotions are pretty much the same as another's, emotional responses are actually unique to each individual. They are based on very personal thoughts and carry personal meanings that stem from each person's past experience. There is much to be learned from your emotions--about yourself, what is important to you, your personal emotional history, and your appraisal of your situation and the significant people involved. In this essay I give three case examples to illustrate these points. This essay is about self-exploration and self-discovery, using your emotions as a starting point.
Mastering Anxiety Everyone who has cancer has anxiety too, to varying degrees at various times. If you think about how you are dealing with anxiety, you'll probably recognize certain approaches or strategies that have worked for you in the past and that are consistent with your personality. I know many people with cancer who have made a concerted effort to master their anxiety. They have developed many effective approaches and techniques, and I share those in this essay in hopes that these approaches can also help you.
Giving Attitude to Cancer
Right now, as you read this, you have a certain attitude or approach to your illness. It is probably not an attitude you deliberately chose after weighing the pros and cons of other options. It might be more accurate to say that you find yourself with an attitude or approach that seems right for you. But where did this attitude come from? What gave rise to it in this situation? What does it say about you, your strengths and weaknesses, your personal history, and how you relate to suffering? In this essay, I hope to help you reflect on these questions with an aim toward embracing all the ways your attitude serves you well while also considering possible pitfalls and whether another approach could actually be better for you. I do this by discussing five attitudes that commonly arise in people who have cancer.
Five Existential Dilemmas
This essay discusses five dilemmas that most people with cancer confront, in various ways and at various times. How do you balance, for example, being optimistic but also realistic? How do you give your illness the attention it deserves while not letting it take over your life? How do you allow yourself to be justifiably upset over your illness while also keeping in mind that many others are worse off? And finally, how do you allow yourself to feel rotten when you are hurting while not giving in to sickness too readily? Most people with cancer want to have the right emotional reaction, but it is not readily apparent what that reaction should be. I hope this essay will help you resolve these dilemmas in a way that is right for you.
God and Suffering
This essay is relevant to those of you who are searching for comfort and guidance from your religious faith or spirituality. This search invariably runs up against some troubling questions. Why, for example, does God allow innocent people to suffer? How does your illness fit into God's plan or purpose? Why does God seem so distant, silent, and even indifferent as you suffer from cancer? If God can't or won't intervene, then what does it make sense to pray for? In the philosophy of religion, the deistic tradition provides a view of God's relation to the world that can help with these questions. It points to the spirit of God in each person, a spirit that can be called upon to help when dealing with cancer. In this context, I discuss five things worth praying for.
On Coming to Terms with the Possibility of Death
One way to have a peaceful death is to come to terms with it before your illness advances to a terminal stage. Many people with cancer do that, especially if their prognosis is poor. In this essay I discuss how patients I know have come to feel a sense of acceptance about their eventual death. Most of this discussion is based on interviews I conducted, as part of a study, with patients who were relatively young and had a poor prognosis. Many thoughts and emotions helped them in this process. If you are struggling with this issue--wanting somehow to feel reconciled to dying, when the time comes, but not knowing how to get there--it may help to learn how other people with cancer have done that.
Cancer as a Gift?
Cancer, of course, is not a gift. But for many people, having cancer has actually enriched their lives in certain respects, and these patients often refer to it as a gift. In this essay I discuss five ways that cancer can be (in part) a positive experience, and I give many examples from people I know. Cancer can be a wake-up call to pay attention to what really matters and to live with greater appreciation and gratitude. It can help you to live more fully in the present moment. It can make you more aware of how much you are loved and valued. Often, in response to cancer, a person's best self comes to the fore. Cancer can also lead to a deepening of a person's faith or spirituality. If you have not yet encountered these positive aspects, perhaps my discussion and examples will help bring them to life in your own experience.
My Interrupted Life: Jenny's Story
Each person's experience with cancer is completely unique, and there is no one right way to go through it. This is one unique story: the story of Jenny, a remarkable forty-two-year-old woman with colon cancer. Her story is told in the first person, constructed from transcripts of our therapy sessions, her journal entries, and my notes from our sessions and the support group meetings she attended. If you read her story, you will see that she is remarkable in her ability to face hard realities head-on. I think you will be impressed by her ability to articulate the conflicts and dilemmas that bounced around in her mind and may be bouncing around in yours. Her story brings to life many of the themes addressed in these essays, and it also reflects the individual and personal nature of each person's experience. (My wife said everyone should read this story first!)
I use patients' names in the essays in this collection, but these names are fictitious and I have changed other identifying information to protect the privacy of those who have shared their experience with me. In all cases, this sharing has been deeply personal, and I have been honored to be on the receiving end of it. I have tried to honor these patients in turn by sharing with you what I have learned from them.
Reprinted with permission from Finding Your Way Through Cancer: An Expert Cancer Psychologist Helps Patients and Survivors Face the Challenges of Illness. Copyright © 2010 by Andrew Kneier, PhD, Celestial Arts, an imprint of Ten Speed Press, a division of the Crown Publishing Group, Berkeley, CA.