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HOW THIS BOOK
CAME TO BE
Carol Matzkin Orsborn
When I was first diagnosed with breast cancer, well-meaning friends gave me a number of books that alternately encouraged me to "run the race for my life," "wage war against the enemy," and achieve the ultimate goal: to be a "survivor." Not only did I have to deal with all the emotions anyone would feel when facing her mortality, but I was asked to assume a competitive, warlike value system that was opposite to my own innate sense of how life was meant to be lived. Of course I wanted to live—but not as a "survivor," not as someone who would let a reactive relationship to a disease define her entire existence.
Happily, I was blessed with inspirational role models: three remarkable women who were on the journey through breast cancer a few steps ahead of me and who had independently arrived at similar conclusions. Miraculously, all of them came to me at a critical moment, bringing with them their own wisdom and experience. As I went through the stages of diagnosis, treatment, and recovery, I often called on their friendship as well as their expertise.
The first woman was Dr. Susan Kuner, who was already my best friend in Nashville. In fact, it was the diagnosis of Susan's breast cancer that alerted me to my own developing situation—quite possibly saving my life. As I sat at the foot of her bed on and off during the early months of her illness—and before I knew I, too, had a problem—I watched in awe as Susan entered her newterritory with all the aplomb of a spiritual pioneer. Her remarkable journey was a major influence on the upbeat philosophy underlying the book I was writing at the time: The Art of Resilience: One Hundred Paths to Wisdom and Strength in an Uncertain World. Ironically, by the time that book was published, it was Susan's turn to sit with me. Not only did I have a mastectomy, but my more serious diagnosis called for months of chemotherapy treatment she had not needed.
In the midst of treatment, doing what I could to promote my book while dealing with the physical effects of chemo, including the loss of my hair, Linda Quigley, a feature writer for the Tennessean, came to the house to interview me for the paper. I must have been the only person in Nashville who didn't know that Linda had also had breast cancer and undergone chemotherapy. In fact, she had written about her experiences the previous year in the daily paper, receiving a top award for her writing. As the interview proceeded, it soon became obvious that we not only had breast cancer in common, but an excitement about the spiritual dimensions the disease was opening up for us.
At the time I was promoting my book, I was also in the midst of completing the two final courses of my Master of Theological Studies degree at Vanderbilt University's Divinity School. Everyone who heard about my situation at school had the same response: You've got to talk to Karen Stroup. Karen had been diagnosed with breast cancer while pursuing her doctorate in religion several years before me. But somehow I didn't get around to it—and then during an unplanned moment in the chemotherapy treatment room, I finally met the Reverend Doctor Karen Leigh Stroup—yet another serendipitously life-changing encounter. Karen, who I am proud to say is now my friend, reached out to me at a particularly scary moment to teach me how to hope against the odds. Not only do we now have a serious theological education from Vanderbilt University in common, but an unbounded belief in miracles, as well.
When I finally finished chemotherapy, just one year ago, I gave myself permission to put my experiences behind me and return to the book topics that I had begun before diagnosis, one about my experiences at divinity school and another about spirituality at work. Frankly, I didn't want to dwell on the details of my illness—not even the inspirational ones. Unfortunately, my own return to everyday life was too often interrupted by phone calls from women newly entering the world of breast cancer and other serious illnesses. Could I offer them any advice? I did what I could. But one thought kept coming back to me: They needed not only to hear from me, but from my friends, as well. The urgency of my mission picked up tempo as I increasingly encountered the "cancer culture": a world in which people who die are "losers," and the "winners" are those who emerge from illness unchanged. I knew that this unhealthy attitude was useful in that it heightened emotions around our illness in order to raise funds for research more effectively, but it came at the expense of our spirits. As a seasoned author of spiritual books, I had long ago given up the idea of being a master of the universe. I'd learned to stop thinking of my inner world and outer challenges as enemies to be conquered, and learned to recognize the potential for true greatness in acceptance and compassion for myself and for others, regardless of the obstacles I faced. To create the optimum environment for my healing—body, mind, and spirit—what I most needed was not a mighty sword but rather a mighty heart: a heart that could hope, love, and remain faithful in the shadow of mysteries that were beyond my comprehension. This was my prayer: to grow my connection to God through my deepening humility.
One day, after leaving a fund-raiser exhorting us to lead the charge in the war against cancer, I decided to make four phone calls, one to each of my friends, and a fourth to agent Linda Roghaar. How about writing a book about cancer that challenged the war mentality and that supported readers to create a new kind of relationship to their disease—a spiritual relationship that would truly create the environment in which the deepest healing possible could take place? This healing, I knew, could take place regardless of the outcome. Because these three women were my teachers as well as friends, I knew they would understand.
Joyously, there were four "Yes's" to the idea for this book. Soon thereafter, there was a fifth "Yes," from Conari Press, who recognized and supported the radical nature of what we were trying to do. Together, we agreed on nine key questions we wanted to address. We realized that the questions followed an order. We recognized common and identifiable issues and stages. We grouped our questions into five broad topics or stages, the psychological and spiritual landmarks those who face life-threatening disease routinely encounter.
Working independently after that first meeting, each of us answered the questions from our individual spiritual perspective, derived from personal experience. Ensuring our own fresh voices and perspectives—while continuing to grow our friendships on a personal level—we eagerly anticipated the time in the not-too-distant future when we would come together again to share our answers. You'll see that while we arrive at similar places, we often get there via very different routes. We hope that by showing you our most intimate relationships to cancer, we can help you find your own path through illness as spiritual initiation rather than war.
When I invited my three fellow writers to join this project, I knew that this mission—the desire to chart a new pathway through illness—was something we had in common. What I hadn't stopped to realize is that we had as many differences between us as we had similarities. Among the four of us, we represented four (or more) different spiritual traditions and four different stages of breast cancer: Stages I, II, III, and IV. Susan, with Stage I cancer, studied for more than twenty-five years with a Sufi teacher, Pir Vilayat Khan. Linda, with Stage III, grew her spirituality within the twelve-step programs. Karen, Stage IV, is Christian and a minister of a church. I am Jewish, a theologian, and a student of Eastern philosophy. My cancer is Stage II.
We also represent a diversity of living arrangements and choices, with and without children, husbands, or partners.
What we share, however, is the discovery that even something as frightening as breast cancer can be incorporated into a full and joyful life. As you read this book, I believe you will become attuned to hearing not only in our voices but, in many voices, the growing grassroots awareness of the spiritual dimensions of serious illness. Wherever you are in your journey through life, I invite you to join our quiet revolution.
HOW TO HAVE CANCER
WITHOUT GOING TO WAR
The women of the Baby Boom generation have changed every institution we've touched. We've changed the way women work, parent, relate to men and to each other, how we dress—even down to our undergarments. We are, after all, the same generation that burned our bras in the 1960s. We have come to understand hot flashes as power surges and view aging as the new frontier in which we redefine midlife and beyond.
Now, sadly, we have a new task: transforming the world of breast cancer and other serious illnesses, with their rampant macho terminology of warfare and survival, winning and losing. This quiet revolution is largely a spiritual movement, already well underway, as individual women experience their own brushes with mortality not as tests of survivorship but as initiations into the deeper mysteries of life. For a growing number of us, life-threatening illness carries with it spiritual dimensions and meanings that the current crop of advice books in the field does not even come close to touching.
Women are giving voice to a new way of viewing disease. We want to describe the experience of cancer in a different language. There is a spiritual pathway through cancer, a new language to express ourselves and to speak with others.
Of course we want the scientific facts, the medical research, the latest technology—not to mention the inspirational stories of women who beat the odds. But we want something more. Regardless of the outcome of our illness, we want a quality of life that reflects our deepest values.
The feminine values of coexistence instead of separation, integration instead of banishment, and relationship instead of opposition clash with our experiences of the health care system. The landscape is jarring. With full memories of our generation's marches for peace, we find that our culture is waging a "war" on cancer. People with cancer are either "victims" or "survivors." When a women dies, her obituary says, "She lost her battle with cancer." Our doctors and friends encourage us to be upbeat and to maintain a "fighting spirit." Get a cancer diagnosis, and you will find yourself at war.
Imagine that our nation is at war. The war drags on for years, and the years turn into decades. The government announces that, in the last year alone, the war cost over half a million American lives—hundreds of thousands more deaths than World War II. That's actually what has happened in the war on cancer, declared 25 years ago by President Nixon.
This quote is from publicity for "The March," a grassroots movement that demonstrated against the enemy—cancer—hoping government would increase funding for research. That's a noble cause, but listen further to the language:
It will be the biggest Hallelujah Chorus in history. A grand and glorious noise. The echo of a million voices, speaking as one. It is called The March. The last mile in the journey that will conquer cancer. The final proof that the irresistible force of human spirit can defeat the immoveable object of disease.
The honorary chairperson of The March was General Norman Schwarzkopf, the military leader of Desert Storm. When we heard him talk on television about The March, he sounded much like he did when he was planning an attack on the Persian Gulf.
The world of life-threatening disease is frequently described as a battle. Our language comes from our culture, and the choices are few. Battle language offers strength and encouragement when navigating the strange and frightening process of life-threatening disease. The battle language is not wrong. No way of coping with cancer is wrong. Some research even indicates that a fighting spirit may prolong survival.
Each person must find her own way, digging for footholds in a steep, craggy terrain. But what about those of us who do not see life as a battle? Winning words and battle language do not describe our experiences or attitudes. Carol tells how she found herself on the battlefield at a cancer fund-raiser.
As I approached the end of chemotherapy, I received an invitation to attend my first cancer fund-raiser. I was excited by the promise of being in a room with so many other women who had gone through the cancer experience. I thought it would be healing for me. I invited Susan to come along. When she hesitated, I was astonished.
Then I found out why. A step ahead of me, Susan had already dipped her toe in the cancer culture. She tried to warn me, but I plunged right in.
The women at my table were great—everything I had hoped for. I would have loved to have had more time to talk with them. But too soon our attention was called to the front of the room. Over a box lunch, the talk from the podium was not about healing, but about warfare. The keynote address was delivered by an energetic TV actress, who bounded about the stage, demonstrating how she had used the strength of her will to kick cancer's butt. A self-avowed superwoman, cancer was no match for her. Through positive thinking, she had accomplished what lesser mortals sometimes failed to do: rid herself of all signs of the disease.
She was followed by a tough-as-nails public official, a woman in her sixties who was receiving an honor for her legislative work in support of the fight against cancer. She used the occasion to brag about her victory over cancer: making it to work every single day of her treatment. She had emerged from the battle virtually unchanged. With reconstructive surgery, she had the breasts of a twenty-year-old.
Although none of us viewed breast cancer as war, it was all too easy to find ourselves drafted.
Sports have many similarities with war, one being that we are either winners or losers. Susan tells this story:
The event was a cancer fund-raiser, one of thousands like it in cities and towns around the country. So many people had lost loved ones. This was their way of giving back, of raising needed dollars for research, treatment, prevention, and for a cure.
The theme was a race. At the track of a suburban school, people arrived with tents, coolers, and lawn chairs. The walkers and runners were to circle the track night and day. Participants had solicited donations for their journeys.
This was my first outing at a public cancer event. Emerging from the almost full-time job of being a cancer patient, I wanted to join the movement.
The track looked like a carnival. At the tent with a sign for our hospital, I spotted Carol and her family.
The crowd was upbeat. But for Carol and me, this gaiety was weird and confusing. We clung to each other. Carol was still in chemotherapy. Her port, the tube allowing easy entry for the chemotherapy concoctions, was sutured into her chest, hidden beneath her blouse. She wore a floppy hat on her bald head. My treatment had ended months earlier.
At the sponsor's tent, "survivors" signed in. The survivors, bearing balloons and sashes, were invited to walk the initial lap.
We lined up on the track and began to walk. A friend from graduate school was beside me. He has cancer? I hadn't known. He had been diagnosed with Stage IV lymphoma, a cancer of the lymphatic system. I recalled my cancer statistics, which since my diagnosis I had studied as if for catechism. The tables say he has a small chance of survival. In cancer terms, survival means living for five years. There on the track, we made a date for lunch.
We had no time to talk further because a roar erupted from the crowd. People were shouting and applauding madly. "Why on earth are they clapping for us?" I thought. "Because we have cancer and are still alive? In the past, when people applauded, it was because of something we had accomplished. This was not our choice." I didn't get it. But we had completed one lap. We crossed the finish line. The applause was for our metaphoric accomplishment.
Carol and I had an important talk that evening. Her surgery was behind her. Well, almost. In addition to the port, a second plastic tube with a bulb on the end snaked out of her mastectomy incision to drain the wound of liquids. The plumbing aspect of cancer is hidden from the public. The ones who are treated know it well. It is bizarre and uncomfortable, but quite tolerable and even welcome on the scale of dreadful possibilities. The surgical drain speeds healing. The port replaces needle sticks.
Carol was despondent. She was ready to get back into the activities of her life. Her experimental chemotherapy treatments would last for several more months, but had become manageable. Two days of feeling dead, a few days of transition, and by the end of the week, feeling more or less like herself. A determined, energetic woman of many accomplishments, why did she feel so exhausted and unsure? "What's wrong with me?" she had been asking. At this stage she had pictured herself well on the road to recovery.
Healing takes time. Time to recover physically from the treatment, the shock of surgery, and the sheer toxicity of the chemotherapy agents. It takes time for the body to find its equilibrium again. It takes time to learn to live with cancer as a chronic disease. It takes time to get used to the uncertainty of a disease where great advances have been made, but the cause remains unknown. It takes time to reorient the body, mind, and spirit to a life profoundly changed.
I told her about the rule of thumb I had developed. Physically, with my excellent prognosis and nearly a year out from my treatment, I should have been back to my old self. Instead, I was dealing with sudden waves of sadness and loss. My rule of thumb was this:
If I cry at the office, I stay. If I sob, I go home.
Carol was surprised. She was ready for this to be over. Determined, savvy, spiritual, supported by family and friends, insured, receiving excellent medical treatment, she seemed to have everything going for her. Like the race, why couldn't she just use her will to cross the finish line? She was relieved to hear that even with the acute treatment over, it was not clear sailing. She saw that uncertainty could be just as much a part of healing as a positive attitude.
The four of us wrote this book to suggest that there are ways one can have cancer without going to war. As you will see in our stories, we are women for whom the war metaphor just didn't work. Yet, when we told the medical establishment that "winning the battle" in no way described our experiences, many assumed we had a death wish. Wrong. We had a life wish, a wish to integrate our experiences with cancer. Cancer was not an enemy to be vanquished, but a part of ourselves. Thank goodness we found each other. We know there are many more like us.
We see why the battle metaphor for cancer persists. The tumor is the enemy. With our doctors, we make a battle plan. Surgery. Chemotherapy. Radiation. The tumor recedes. With diagnostic tests and physical exams, we scan the horizon. A new tumor may appear. Another treatment. Another skirmish. And so it goes. The good news is that because of research, treatments are improving and a person can live this way for a long time.
But the danger of this battle metaphor is that the spread of disease may become the measure of the fight. We cry for the harm it does to those who feel they did not fight hard enough, who fear that death means, "I lose." Many people suffer unnecessary anguish because of this belief.
More sensitivity is being developed about the harm of the battle image. For example, the cancer support organization Gilda's Club asks all presenters to refrain from dwelling on the fighting spirit, eliminating words like struggle and battle. The path of spirit is not the path of competition and war. The path of spirit finds a way to unify jagged fragments, to make a patchwork quilt out of what might have been discarded or despised.
This is the feminine way of being in the world. In the Odyssey, while Odysseus was at war, Penelope stayed home weaving. For many centuries, it has been Odysseus who has been the more highly regarded, the adventurer in foreign lands, the conquering hero. Now, the perspective is shifting to the feminine in many aspects of our culture.
In various fields we are learning that the world is an interdependent place, a globe that has put people in such close contact that the only hope is cooperation and coexistence. For instance, Celeste White writes in an article about microbes in the Institute of Noetic Sciences newsletter that, "instead of talking about war, we should be asking how we can interact successfully with infectious microorganisms." That enemy is not outside us, but is part of us. In the awakening of consciousness, we are no longer missionaries to other lands. To change the world, we must start with ourselves.
The role model for women and men is no longer Odysseus the Hero, but Penelope the Weaver. Suddenly we see that the work of Penelope, staying right where she is, is much more important for our time. We must study how things fit together, and how to work with systems instead of their parts. There is no enemy and no one to blame.
We want to change more than the words we use to talk about cancer. Words correspond to consciousness, to an awakening in a world that is much more than it seems. Perhaps even more distressing than her illness to a woman who has been diagnosed is the fact that this wider consciousness is often missing from the medical system and from our communities.
When each of the four of us was diagnosed with breast cancer, many friends tried to be helpful. We are grateful for their consideration, support, and concern. We received many self-help books about fighting disease. Some were encouraging. Most felt preachy and annoying. They were often either patronizingly sunny or summonses to battle. They did not leave room for the infinite number of tiny steps through the maze of emotions that come with a life-threatening illness. The authors of those books wanted us to banish demons that we had not yet gotten to know. Susan tells the story of one of these tiny steps in the maze:
One month after my diagnosis, I sat in my usual decisionmaking posture: half dressed, perched on the edge of the examining table. My surgeon was telling me that the news was not good. I had been adamant about saving my breast, and responding to my wishes, he had performed a lumpectomy. He found a second tumor in the tissue surrounding the first. This confirmed his initial diagnosis. Multi-focal breast disease. Treatment of choice: mastectomy.
I finally agreed. I had tried so hard to save my breast. I was worn down and exhausted.
"Before we go into surgery," he said, "I need to know if you want breast reconstruction."
I could not deal with one more question. I burst into tears. "I don't know how to have cancer," I sobbed.
He touched me gently on the shoulder. "No one knows how to have cancer."
We would never claim, nor would we want to, that we know how to have cancer. Yet after reading each other's accounts, we know much more. Through our diagnoses, treatments, research, and questions, we were convinced that a deeper level of information was available somehow, somewhere. The scientific research was useful but inconclusive. The heroic tales of overcoming illness were depressing. We needed real, honest, considered, balanced, spiritual accounts of experience. We needed multiple perspectives. We needed hope that was grounded in reality. We needed a new description of the critical pathway through disease and a new language with which to talk about it.
This book is by four women who have cancer and who do not wish to live on a battlefield. We have times when we fight, other times when we surrender, but we are not at war. We are at peace. At least we try to be, in the moments when the turmoil dies down or when clarity shines. We want to go out on the edge, learn the most we can, from the widest range of emotions. We are not afraid to cry in anguish, rant in frustration, and laugh uproariously. Rather than ask, "Why me?" we say, "Come what may."
We wish we could say that none of you will have to take this path of breast cancer, that we were the only four who would have to travel this journey. But we know some of you will join us, or will care for someone who does. So until we understand the cause of this disease and can find a way to prevent it, we present a framework for the path of illness.
This critical pathway is divided into five broad steps, the psychological and spiritual landmarks of a disease that can mean death. Although one would never choose illness, it can serve as a catalyst for understanding. With spiritual preparation or with grace, illness can open up a profound realization about the sacredness of life. In this sense, some would call cancer a gift; however, we've come to see that the gift is what we bring to the experience, not what it brings to us. We need new words and concepts to describe the next frontiers of care and understanding.
HOW TO SPEAK THE
LANGUAGE OF HEALING
|Instead of saying||Say|
|I am a victim of breast cancer.||I was diagnosed with breast cancer on ..|
|I am a survivor.||I am a cancer initiate. I am living with a breast cancer diagnosis. It has been six years since my initial diagnosis.|
|I am fighting breast cancer.||I am in treatment for breast cancer.|
|I beat cancer.||I was initiated by cancer.|
|She lost her battle with breast cancer.||Breast cancer was the cause of her death.|
|The War on Cancer.||Advances in breast cancer research and treatment.|
|Chemotherapy is poison.||Chemotherapy is medicine.|
|How are you?||It's good to see you.|
|I am cured of cancer.||I am doing well.|
|Anything about God such as, "God must love you very much."||I will keep you in my thoughts; I will keep you in my prayers.|
|You'll be fine.||I hope it goes well for you.|
|Did they get it all?||I hope it went well.|
|Is there anything I can do?||Be specific in your offers: can I get your groceries, pick up your kids ...|
|Speak the Language of Healing|
|Preface by Dr. Joycelyn Elders||ix|
|Foreword by Jean Shinoda Bolen, M.D||xi|
|How This Book Came to Be||1|
|How to Have Cancer Without Going to War||5|
|How to Speak the Language of Healing||15|
|A Pathway to Spirit||16|
|The Five Stages of Transformation|
|The Stage of Impact||21|
|ONE Did I Create This?||23|
|The Stage of Chaos||43|
|TWO Does Death Mean I Lose?||45|
|THREE Does God Get to Vote?||61|
|The Stage of Choices||75|
|FOUR Is Treatment War or Initiation?||77|
|FIVE Do I Hold On or Let Go?||95|
|SIX Do I Trust the Medical Establishment or Do I Put|
|My Faith in Alternative and Spiritual Healing?||107|
|The Stage of Community||125|
|SEVEN From Whom Must I Learn to Receive? FromWhom|
|Must I Learn to Protect Myself?||127|
|The Stage of Spirit||147|
|EIGHT How Can I Find Peace of Mind When I'm Living|
|My Life over the Edge?||149|
|NINE What Have ILearned?||165|
|Group Study Guide||197|
Posted July 20, 2012
This book has helped many a cancer patient develop a plan to help them go through all the stages of the disease that make sense in a"warrior: mode, not a "war" mode. It helps one figure out what the best way to help your body do its healing, rather than batteling.
Constructive rather then destructive vocabulary makes room for healing.