Read an Excerpt

A Note from the Author

One of the goals of Cancer Talk is to help people not see themselves as "victims," because being a victim implies that you are powerless. Today, people dealing with cancer are not powerless. Please note that we subscribe to the National Coalition for Cancer Survivorship (NCCS) definition of a cancer survivor as "anyone with a diagnosis of cancer, whether newly diagnosed or in remission or with recurrence or terminal cancer." This means that from the moment of diagnosis on, you're a survivor. There are millions of people dealing with the same issues and struggles that come with the cancer experience. Within these pages are many voices that will resonate with yours.

Cancer Talk is a collection of voices of cancer survivors, family members, friends, physicians, nurses, researchers, and other health care providers from throughout the United States and Canada who have shared their insights and knowledge with us on "The Group Room," a nationally syndicated call-in radio cancer talk show and support group. Except for experts and known personalities, whose names and affiliations are fully identified, names, cities, and identifying characteristics of cancer survivors and their families and friends have been changed, but not the essence of what they had to say. Their voices of hope and endurance give you the vital basics you need to get through cancer.

"The Group Room" has been on the air since February 1996. And every Sunday since then, we've been meeting as the world's largest cancer support group in a live call-in format to explore all the aspects of cancer—physical, emotional, clinical, social, political, and spiritual. The program can also be heard in real time on the World Wide Web at vitaloptions.org.

"The Group Room" cast members, who'll be identified by their first names throughout the book, include our medical oncologist, Michael B. Van Scoy-Mosher, M.D.; our radiation oncologist, Leslie Botnick, M.D.; and our therapist, Halina Irving, M.F.C.C., who is also a breast cancer survivor. Calls to "The Group Room" are screened by our oncology social workers, Carolyn Russell, L.C.S.W.; Diana Crispi, L.C.S.W.; and Perry Lisker, M.S.W. I moderate the dialogue in Cancer Talk, much as I do on the air, and my remarks appear in standard paragraph form.

Welcome to Cancer Talk, your source for support, information, and inspiration.


Fear and Anger, Hope and Humor

I had to make friends with fear.
—Olivia

One of the most common elements of the cancer experience is dealing with the spectrum of emotions that accompanies a diagnosis. Fear can be so overpowering that it can keep you from recognizing hope. And misdirected anger can push those you love away at a time when you really want them close. In this chapter, people share how they handle feelings of fear and anger, as well as find humor and nourish hope.

Cancer survivors deal with many different fears. Initially, it's the fear that accompanies a diagnosis: fear of the unknown, fear of dying, fear associated with receiving treatment, or ending treatment, fear of not being in control, plus fear of developing side effects or pain. For those involved in clinical trials or experimental therapies, the very nature of their uncertainty and unknown results may produce anxiety. Oftentimes, fears flare before routine follow-up exams. After cancer, there may be the lingering fear of recurrence, or the uncertainty of any late effects of treatment.

With certain cancers, such as low-grade lymphomas, the treatment of choice is no treatment at all. Treatment may not be initiated until the disease becomes symptomatic, leaving patients in a wait-and-watch mode that could last years. Living in this emotional limbo, with the stress and fear of uncertainty, makes patients feel as if they can never put the cancer behind them and regain a sense of control over their lives.

Fear can also masquerade as anger, which may keep you from directing your energies toward healing. It's no wonder that a person feels angry when cancer interrupts his or her life. Everything is changed in a split second, leaving you feeling, at least initially, powerless. You may face surgery, radiation, and/or chemotherapy. There can be side effects and risks to deal with. Relationships and your ability to work may be challenged, your sense of security is threatened. The future feels unsure, and questions of mortality are raised. The key is to be able to express the array of powerful emotions that go hand in hand with cancer. Having the courage to talk about your fears helps you diffuse anger and gain the clarity that's needed to make important decisions. It may feel very scary to even think about letting your feelings and worst fears out. I remember a man once told me that it was the intensity of his feelings that was so disturbing; the very idea of crying and facing the depth of his feelings made him fear that he would become out of control. So he withheld from expressing anything that would show his vulnerability. And his anger grew in proportion to the state of isolation he had created for himself.

If fear and anger are unavoidable aspects of the cancer experience, hope is central. I've learned from my own experience, and that of many others, that hope is a fluid thing, changing in response to people's needs. When you're just diagnosed, you hope for a treatable disease and recovery. When you face treatment, you may hope that potential side effects are minimal and that you get through treatment easily and successfully. Those dealing with advanced disease may hope to be pain free, to have time to spend in meaningful ways, for the chance to say "I love you" to someone special, or to resolve outstanding issues. By talking, reaching out, letting others know what you're feeling, and asking for the information and support you need, you build your own feelings of hope, helping others feel hopeful as well.

Perhaps the most surprising feeling associated with cancer is humor. Humor can be a very powerful release of our darkest and most hidden fears. Laughter in the face of tragedy, nervous giggles, laughing with tears in our eyes; these are ways to express the vital force that exists in all of us, no matter how difficult things get. Sometimes you cry until you laugh, or you laugh until you cry. I celebrated the end of treatment with a "Chemo-finito" party, inviting friends to "cell-ebrate my new infusion of life." Though there were  some who felt uncomfortable with my black humor, it was a life-affirming celebration for me.

Handling Fear and Anger

Feelings of fear and anger are intertwined in the cancer experience. Most people want to feel a sense of control in their lives, but cancer challenges that, and you go through a flurry of powerful feelings. Since there's no way to avoid the intensity of emotion that patients and families feel, the best thing you can do for yourself and for one another is to express yourself. No two people deal with cancer in an identical way, but what is universally true for anyone effected by cancer is the relief that comes from talking about it. Even people most resistant to the idea of support groups or counseling admit that they are a source of valuable information and bring focus to an overwhelming time of life.

Many fears and stresses accompany cancer. Fear of not being in control, fear of uncertainty and the unknown, fear of pain and change, fear of not being able to meet your obligations to family and job. Fears can mask themselves in anger and hostility, which is often directed at those you're closest to, as well as doctors, nurses, and technicians.

HALINA (therapist): People need a little time to let themselves feel the normal fear and pain that come with the diagnosis and treatment of cancer. It takes a very emotionally healthy and normal person, a person with ego strength, to have that fear and to grieve. Human beings have to grieve the catastrophes and losses that happen in life. Suppressing fear and sorrow interferes with the normal grieving process.

DR. MICHAEL (medical oncologist): I sometimes see people who put enormous amounts of energy into trying to repress negative thoughts, trying to keep them away. I encourage patients to grapple with these thoughts, to allow them to roll over them, to wrestle these feelings to the ground rather than suppress them, because they're going to be there.

JANET: It's not just for yourself that you worry. I'm a single mother. When I got the news that I had breast cancer, I felt like someone was sitting on me, there was so much pressure. How am I going to get through this terrible trauma? How am I going to support my children financially? Emotionally? All I could do was say to myself, "Let's make today as good as possible, because we don't know what tomorrow holds."

MITCH: You worry, but you have to move on. The first thing I felt when I got the diagnosis for Hodgkin's disease was fear, then depression. I asked myself, "Why me? I'm an athlete, I'm active, why did I get this?" Then I asked myself, "Now that I have it, what do I do to beat it?" I had chemotherapy for quite a while and I had a bone marrow transplant. I'm a fighter. I went straight forward. I said, "Let's do this, let's get it done." I was scared, but I knew there was nothing to do but do it.

FRANK: My prostate was surgically removed four weeks ago. I'm doing well physically. However, the doctors are going to do a test next week to see if the cancer's still there. On one level I think I'm handling it well, but subconsciously I'm not. My wife tells me that I'm irritable and edgy. I don't think I'm worried, but maybe I am. I'm living with the concern, wondering what the test will show. Did they get all the cancer?

ROSEANNE: I know this isn't rational. Maybe it's because it's still so early into my diagnosis of breast cancer. I'm only twenty-eight and sometimes I'm afraid to close my eyes and go to sleep at night because I worry that I won't wake up.

GLEN: I'm a childhood cancer survivor. Sometimes I wonder if I'll develop a secondary problem from my treatment for leukemia. That's a fear I'm learning to live with.

MARIO: I'm afraid of everything. I'm fifty-seven and newly diagnosed with prostate cancer—I'm having the surgery in a few days. I'm afraid I'm going to die before the surgery, I'm afraid I'm going to die during surgery, I'm afraid they won't get all the cancer, I'm afraid I'll be impotent and incontinent forever, I'm afraid I'll be "cured," then get it again. I'm even afraid that it won't come back, but I'll live the next twenty years afraid that it will come back.

HALINA (therapist): It's OK to be scared. If you can acknowledge your fear to yourself, and those close to you, if you feel entitled to that emotion, and if you expect everybody else to allow you to have it, you will, paradoxically, feel less scared. Courage isn't not being afraid. It's being afraid but coping with that fear, bearing it, living with it. It's normal to feel scared when your health, physical integrity, or life is threatened. And it's OK. Instead of worrying about your fears, whether conscious, subconscious, or unconscious, remember that if you were running from a tiger in the middle of the jungle, you'd be scared. And dealing with cancer is a little bit like running from the tiger.

ELLEN COHEN (cancer activist, survivor): One of the hardest things for many lymphoma patients is the psychological impact of years of waiting and watching. I think it's a huge challenge. Once you get used to the fact that you're not going to die in the next two months, or six months, or year, it becomes a little easier to live with. But it does take time. All that we can really say is that you just have to wait.

JOE: I've got lymphoma, but the doctors say it isn't "ready" to be treated yet. I have to wait for it to get bad enough, which may be five minutes or five years from now. The waiting is driving me crazy. I wish it would just happen, then I could be horrified, have the treatment, throw up, lose my hair, then get on with life. I'd rather just deal with it than be in this constant state of continual, low-grade fear. It never ends. It won't end until I get the full-blown lymphoma. And then I may end.

PAULA: I also have lymphoma. The doctors say everything is under control, but I feel like there's a ticking time bomb in me. I wonder when I'm going to blow up.

HALINA (therapist): Having to wait and watch is so emotionally difficult. We know that uncertainty is the most painful, the most stressful, the most difficult thing of all. Those who have to watch and wait live with tremendous uncertainty. This deprives us of the one thing that helps with uncertainty: action, doing something.

MALCOLM: I'm too angry to be afraid. I've been mad at everyone and everything since my diagnosis. I'm only in my early thirties. I eat perfectly, I work out every day, and gear my life toward staying healthy, but I still got "ball" cancer! That pisses me off.

JEFF: I can't believe how irritable I feel. As soon as I walk into the doctor's office I become incredibly angry and hostile to the nurse and staff. I don't get it, because I know they're only trying to help me.

HALINA (therapist): Just a few days ago, I got a call from a woman diagnosed with breast cancer. She had already had surgery, but her doctors were now advising her to have chemotherapy. She was very angry with her doctors because of this. This is an example of displaced anger. She's angry at the experience of cancer. She's angry because her body and her life have come under terrible assault. Fear and anger connect, play into each other. Suppressed fear can come out as anger, and suppressed anger can create a tremendous amount of anxiety. We live in a culture that teaches us anger is a purely negative emotion. We are not supposed to feel angry, because it's bad energy. But it isn't bad. Anger, like sadness, despair, or fear, is a normal reaction to the experience of cancer.