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Advanced Breast Cancer

The Shock of Recurrence


The following article is taken from Chapter Four of Advanced Breast Cancer: A Guide to Living with Metastatic Disease, 2nd Edition by Musa Mayer, copyright 1998, published by O'Reilly & Associates, Inc. For book orders/information, call 1-800-998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Finding out that breast cancer has recurred or spread beyond the breast is always a terrible blow. Almost all breast cancer patients know already that this means their prognosis, which may have been good, is no longer nearly as hopeful. Unless they've known others with metastatic breast cancer, they may even assume that a recurrence signifies imminent death. It takes time, accurate information and support to work through these early reactions.

This chapter will explore the nature of that reaction–from the feelings of unreality, numb shock and terrible grief, to a desperate sense of urgency that time may be short. I'll talk about the kinds of support and information that people find helpful during this stressful time, and the variety of ways in which they begin to adapt, cope and develop strategies for dealing with the reality of metastatic disease.

As you read these stories about how people have reacted and coped to the bad news, you will likely find echoes of your own responses. You will also discover how all of these people surprised themselves by their strength, flexibility and resilience in dealing with this crisis–0and perhaps you will see the beginnings of these qualities in yourself.

Getting the bad news

Getting the "bad news" was beyond any act of courage I had ever faced. It was so far beyond the ordinary that it held no boundaries and took its own mystical and supernatural turns. It was more like a time before words, a time composed of tones and gut feelings. It was so personal. These strange people in white coats pronouncing death, my death, in such a straightforward manner. spent the major part of the first days wandering around, dazed, trying to absorb and put into framework a death sentence that was being foisted upon me.

This was how Pam Hiebert, diagnosed with Stage IV Breast Cancer, described her emotional response to getting the news about her bone metastasis from her surgeon.

Before this phone call I had discussed the cancer diagnosis in her office and it seemed so bizarre, for she kept repeating "We have ways of treating this." All I heard were the numbers, 35 percent chance of being alive in two years. Now I realize statistics are only a crude picture, like little stick figures made up to represent a class of people someone else can look at and line up. I remember at one point getting really angry at this surgeon for not having a solution and I blurted out, "I don't want to hear this. I'll just have to find some people who can tell me better things."

The initial visit with Ralph, my oncologist, came the day after I had found out about the metastasis. I had become aggressive and would no longer answer the phone for results. I wanted action, now! and readily agreed to an earlier appointment with a male oncologist instead of a female colleague of his, whose immediate appointments were booked. I was in such a fit that my skin was itchy all over and I felt extremely nauseous. Sylvan left me lying on a black leather sofa in his waiting room, while she let the nurses know I had arrived. Lying there, staring at the ceiling, I couldn't focus; my mind would only whirl around in macabre pictures. I absolutely could not figure out what was happening to me. Then, Sylvan came back and began to rub my feet and talk to me, letting me know we would soon see a doctor.

These feelings of unreality in response to the shock of a diagnosis of recurrence are not unusual. "People go through various stages in their attempt to adjust to a serious illness," writes psychologist Margaret Backman. Drawing on studies in the literature of coping and adaptation to illness, Dr. Backman describes the responses of one of her patients as typical of what many people experience at this time: "Following the diagnosis, there was a period of shock, of disbelief, an inability to face the reality of what was happening. She felt like an outsider, looking in at the scene. Emotions were cut off, isolated from what was happening around her. There was a sense of cognitive dissonance, a temporary dissociation of the self from the body and from feelings, expressed numbly as 'This can't be happening to me.' " 1 (The footnotes at the bottom of this page give the sources for the material quoted or referred to.)

Jenilu Schoolman reported similar feelings. She characterized the initial period after her diagnosis with metastases to her liver as a time of panic.

No word more clearly describes my initial reaction to the news. I felt like I had been run over. Like I was about to throw up. Faint. Run in circles. My mind raced and I couldn't calm down. What to do? What to do first? Whom to talk to? What to say? I could not cry or scream. Only move blindly from one racing thought to another.

The people closest to me seemed to panic right along with me. We talked about everything, fast, furiously, intensely. And we ran as though our tails were on fire. This, even though I was very weak from an open liver biopsy and the cancer itself. My life had a weird, dreamlike quality just then. It was a juxtaposition of opposites.

Rivers of tears

According to Dr. Backman, the initial stage of shock and disbelief tends to give way to a period of grief and sometimes despair within a day or two. Again describing a patient of hers, newly diagnosed with serious illness, she writes: "Feelings of anger alternating with hopelessness and deep depression affected her eating and sleeping. She was emotionally flooded with disturbing and persistent thoughts of what was to be: thoughts of self, family, friends, job, upcoming treatments, prognosis. The future appeared bleak, as if there were no way out." 2

Jenilu wrote:

The deep tide of awareness that my death was real kept rising and falling. I wrote good-bye letters to people I wanted to say good-bye to and began to cry when I realized this was not some melodramatic play. I had assumed that I, like my mother, would survive breast cancer. I never dreamed that it would kill me. Through the adrenaline haze of panic, a deeper pain began to penetrate my psyche as what was happening entered my being. This was the end of my life. This was real.

After her first metastasis was found in the bone of her hip, Lisann Charland experienced many of these same strong emotions.

The "Why me, Lord?" questions came back over and over again in my mind. Where did I go wrong? What could I have done to prevent this? The guilt and helpless feelings left me crying rivers of tears. Poor Buddy cried along with me and felt helpless and angry at what was happening again to me. I wanted to run away to my family–I needed my mommy. I had not even told my mom and dad of the recurrence. After the crying sessions, I begged Buddy for a divorce. I felt doomed, and did not want to be a burden to him. He had been a wonderful husband throughout all the obstacles sent our way. He deserved better than that. He would not hear of my divorce request, and encouraged me to keep my spirits up. He was staying with me for better or for worse. We lived on coffee only for two days.

Four years later another sickening shock came when Lisann's coworkers were presenting her with flowers and a cake as she returned to work after a hospital stay for some tests.

As we began to eat the cake, my phone rang so I stepped out of the lunchroom to answer it since I was awaiting the results of the biopsy. My office is very close to the little lunchroom on the second floor. It was my oncologist and he had the liver biopsy results. He was very sad but had to tell me the results were positive and to return to the office for further treatment discussions. I felt the second shoe just dropped. I felt my world closing in on me. All my plans were shattered. I was going to die for sure this time since this disease had attacked one of my major organs. I closed my office door and tossed a pencil in the ceiling like a dart. I wanted to scream. I slammed my hand on the desk, and walked out of the office in tears. By then, everyone had recognized that it was bad news. I apologized to the group for not being in the mood to stay and enjoy their welcoming gift and began to clear my desk. I felt very sad and apologized many times for "ruining the party."

Pat Leach described the day she found out her cancer had metastasized to her hip after five years:

I was devastated. My husband cried and cried and that gave credence to the seriousness of it all and that I would die. My kids were shocked–they cried, we cried. But they were all hopeful. I felt very good physically so it was hard to believe this was happening. I ran the gamut of emotions and feelings every day–fear, despair, how would I cope with the pain, with dying. I spent a lot of time, still do, thinking about Chris and the kids and how they were going to cope with my suffering and death. And I thought a lot about what I would miss–Chris' arms around me, laughing and playing together, weddings, births–I felt and still feel that life without me would be horrible for my family.

Sometimes the bad news comes all at once, at other times in devastating steps. That is how it was for Glenn and Barb Clabo. Permanently etched in Glenn's memory is the scene when Barb found out, by telephone, that the cancer was in all twelve of her biopsied lymph nodes.

Barb was sitting in the computer room when she got the news, and I was in the living room. When I walked in, she just plain broke down and cried deep sobbing tears for a long time. It was the same as when I had to tell her her Mom had died. I just held her and couldn't say a word. Anything said would be stupid and most likely not heard. I felt so damn helpless and totally useless. All those caveman instincts came out. I had to help her and make it better. I had to stop her from crying and make her happy. Pretty damn stupid, us men. She finally started to ask questions and I gave her some hope. I really was trying to give us both some hope by talking out loud, and she heard some things that made her feel better.

The next bit of bad news, that her cancer had already metastasized and was at Stage IV, was also delivered by the surgeon.

On the way to see the surgeon we discussed whether Barb should ask if there were any test results. I went into protection mode and said no. Let's wait until we see the oncologist I thought we could have a few good days without knowing. The surgeon examined her and said everything was coming along fine... He was looking through her medical record and writing something and mentioned a test result would drive her oncologist to treat her aggressively. Barb asked what the test result said. He said that there were indications of liver mets! Matter of fact, without much hesitation he just told my love that her cancer had spread to a major organ! Is this how it happens to everyone? I wanted to choke him but Barb just went into her questions about are they sure it isn't something else. Barb was the cool one this time. I was so filled with anger that I don't remember anything for a few hours.

Barb was still holding out hope that these lesions that had turned up on tests of her liver might not be what they feared:

I asked, could it be something else? He said maybe, but since I had so many positive nodes that it was highly likely to be mets. Biopsy was the only way to be sure that it was mets but he didn't recommend it because it is a painful procedure and it wouldn't change the oncologist's treatment. I kept my composure in the office but broke down in the car. Again more panic and fear. Would I ever get any good news?

I kept asking the oncologist the same question over and over but in many different ways. I felt, in my mind, that I had to make sure he understood my question. I asked him if these lesions could have been caused from gall bladder problems. He finally had to be very blunt with me and tell me that I had mets to the liver.

These few examples, with the others given in the last chapter, suggest the devastating immediate emotional impact of a diagnosis of metastatic disease. Although everyone responds a little differently, what these stories tell us is that it is normal to experience a sense of numbness, unreality and disbelief when you first hear the bad news. This is the psyche's way of protecting itself. These feelings are often followed by deep grief, anger and even despair for a time. It's important to get loving emotional support, if you can. Having someone with you and holding you, perhaps sharing in these strong emotions, is what helps most.

While you are absorbing the bad news, it may be difficult to think clearly and make sense of the information you need to decide about treatment. If you allow yourself time to express the normal feelings of grief and anger, and get the emotional support you need, you will feel calmer later on, when it is time to talk to the doctor, research your treatment, and make decisions.

Three a.m. plans and the dubious future

"It has been assumed that recurrence is more distressing, disabling, and discouraging than the shock of the first diagnosis of cancer," wrote Dr. William Worden, a psychiatrist who teaches at Harvard Medical School and practices at the University of Massachusetts Medical Center. Worden studied the experience of patients with several kinds of recurrent cancers, breast cancer being one, and compared his 102 subjects with newly diagnosed patients from an earlier study. 3

Surprisingly, there was a sizable group of recurrent patients (30 percent) who found the experience less traumatic than their original diagnosis. These were patients who were less surprised by the recurrence, who had not let themselves believe that they were cured, and who, in some respect, were living under the proverbial Sword of Damocles.

Lucie Bergmann-Shuster had suspected recurrence for a long time, and experienced the confirmation of her fears, when it came, as a kind of relief. As she awaited the surgery that would give definitive word about whether the mass on her ovary found in the scans was a recurrence of her breast cancer, she was already beginning to prepare herself and her husband for what might lie ahead.

In the intervening week between Thanksgiving and the sail just before the surgery, I had plenty of time to take stock of my dubious future existence. The possibility of life curtailed was very real, although hardly shocking or jolting. I tend to adjust readily to situations, and my body had already told me all year long about what was soon to be confirmed. In these times, I do visualization and what if scenarios in my mind and from that I chart a course of action.

The memories of my mother's death nearly a year prior comforted me with the knowledge that dying was not such a terrible and frightening affair at all, especially with the aid of a hospice provider. My husband and I would talk about my end stages, and he offered to stay with me, possibly taking a leave of absence from work for the duration of the terminal portion. I proposed that somewhere along the way, we might have to hire outside help to handle the household chores and assist with shopping and perhaps even cooking.

It occurred to me that neither my husband nor hired help would be able to continue the upkeep of the garden of which 82 roses in the ground was but a portion of the total garden upkeep. Similarly, our house with its three bedrooms was a bit much for just two people and certainly excessive for the one survivor, my husband. The memories of our life together would haunt him in each room, each niche, and its many shadow plays of morning and afternoon light. So I proposed that we sell our home, and do the little cosmetic lifts needed to make it attractive in the real estate market and then move into a two bedroom condo. Part of the downsizing would be selling off the antiques and furnishing anew but sparsely in a minimalist style. That scenario was painful for me, but whatever loss I would perceive would lighten the future burden for him and that gave me release.

Diagnosed with Stage IV breast cancer that had already spread to her supraclavicular lymph nodes, Kathy Stone was able almost from the start to acknowledge and accept what had happened to her:

For the most part my feelings were almost always based on the acceptance that I had cancer. It was a fact...I couldn't make it go away. As I read and learned more, and found out just what breast cancer was and what it could mean, was capable of doing...my feelings bordered more on the sad, the mortality part of it, being scared, the unknowing. I can honestly say I haven't yet felt really "cheated" or had the "why me?" syndrome. I think that is because I've always felt that everyone has something really difficult in their life to take care of and no one is exempt. This is part of life, even if it may mean an earlier death than I had planned on...and even that isn't a given to any of us at any time.

I never thought I felt angry about having cancer until the past couple of months...then a few things happened that showed me that maybe I was angry. Even now, I'm not sure if I'm angry that I have cancer, or more angry with how it is perceived by others.

As women and their families emerge from the haze of unreality and numb shock, and move through the initial grief and anger, they often begin to experience a sense of great urgency. Although it is rarely the case, death seems imminent. Not knowing if treatment will be effective in bringing about a complete or at least a partial remission, people feel a deep imperative to prepare and plan for what they fear lies ahead. Often, in retrospect, these plans seem irrational or precipitous, but at the time, they fulfill a real need for mastery, and reflect the presence of a heightened sense of mortality.

For Jenilu Schoolman, time was suddenly foreshortened, and she felt a tremendous pressure to complete whatever was undone.

In the next few weeks, my behavior mirrored my thoughts as I dashed about making sure my will was in order, making funeral arrangements, trying to make sense of my rather messy financial affairs, trying...I had so many decisions to make; most of them felt bizarre. What music did I want at my memorial service? Where did I want such a service? Who would do the service? What did I want done with my remains?

While lying awake at night, all the horror of dying at a comparatively young age would overwhelm me. I would think of all sorts of problems the next few years would bring to those I love, and I knew I would not be there to help.

I became compulsive at anticipating my family's needs and tried to dream up solutions only to realize more fully that my death meant I would have no part in helping those I love. Worst of all, I knew my death would cause great pain and I would not be there to comfort.

I have a farm and I worried about its future. Could my business partners maintain the farm? If so, how? What could I do to ensure the security of those people and those things I love? What about simple problems like wood for the next winter? I heat with wood and generally cut it myself. Who would do that chore if I weren't here? Should I breed the goats or not? Did my partners need more or less to care for? Was there anything I could do to help ease the pain of loss for the people I love?

If this sounds odd and illogical, lots of things do at three in the morning. As I tried to prepare myself to die, I tried to prepare my family to go on living. I picked and froze enough raspberries and blueberries to last two years. I made and froze a year's worth of coffee cakes, thinking they'd be useful when people visited after I died, never dreaming I'd be alive to eat them myself.

Where do I start? What do I do first?

Most of us, when faced with a personal crisis, medical or otherwise, find our way through it as best we can. Social scientists, studying how people respond in these circumstances, have found that some situations make coping much more difficult, and that those who cope successfully tend to use certain common strategies.

Harvard psychiatrist William Worden's study of coping showed that stressors associated with high levels of emotional turmoil were:

  • Degree of sickness (including symptoms, disability and confinement).
  • Lack of emotional support.
  • Presence of concurrent concerns unrelated to illness.
  • Pessimism and fears about death.
  • Lack of spirituality.
  • Relative youth.
All of these stressors were significantly correlated, he found, with self-blame. "This self-blame is interesting," Worden commented, "in light of current popular literature that espouses the need to take responsibility for the condition of one's health, whether good or bad."

Worden also found that neither elapsed time since primary diagnosis nor prognosis for recovery had much to do with how hopeful patients felt. If anything, patients who went long periods of time before recurrence, who were most likely to have considered themselves cured, were among the most hopeful, contrary to his initial hypothesis.

In looking at how people coped, Worden found certain factors that helped a great deal, factors we will come across over and over in these pages: 1) knowledge of the medical system and how to negotiate it, 2) understanding of cancer treatments and side effects, and 3) familiarity with the extent and availability of a support system. "Support continues to be an important mediator of distress," Worden observed, "and the support systems for recurrent patients had already been tested at the time of their original diagnosis. By the time the cancer recurred, these patients knew with some degree of certainty what support would be available." 4

The women and men I spoke with shared these same urgent needs for information and support. As the first force of the emotional impact of the diagnosis begins to lessen, most people newly diagnosed with recurrence feel an intense and urgent need to do something, to take some sort of concerted action. Uppermost in their minds, of course, are questions about treatment, prognosis and selecting the best medical team–issues that will be discussed at some length in the following chapters. At the same time, as they go through the often maddening hurry up and wait process of testing, consulting and seeking opinions on treatment, they are also reaching out to others for emotional support, and embarking on a search for meaning.

Reaching out for support can take many forms. Often it can mean seeking out new sources. Disappointed with the response of their friends, and sensing a need for more emotional support, as well as for information, Glenn Clabo subscribed to the Breast Cancer Discussion List on the Internet.

I received an onslaught of welcome messages and a very warm welcome feeling. I think that this day was the day that made me realize that we weren't alone and that I needed people's help. I learned that I could just state my feelings much better though written words than I could verbally.

If they are fortunate enough to have a close and resilient relationship, couples reach out for one another, experiencing an intimacy deepened by crisis. For Glenn, news of the spread of the cancer to Barb's lymph nodes provoked great rushes of tenderness and anguish that sought expression in words, the depth and passion of which surprised him.

How could I keep giving Barb hope knowing it wasn't going to be good news? I knew that it was very probable that the cancer was somewhere else. I wasn't ready for this. I was supposed to die first.

I started writing a poem. I never liked poems or attempted to write a poem before. What made me do this is still beyond me. I do know that I was embarrassed by it and didn't show it to her or anyone else for a long time. Even though I now know it isn't any good, I'm not embarrassed by it anymore. It says so much that I can't say. The world be damned.

A Monster Without Heart

Side by side though our lives
We before the other
Our souls have grown to be just one
Just one and not another

I fight this fight beside you now
I run through every wall
When you cry, you cry our tears
When you trip, I fall

I feel your fear, your hurt, my love
I want to take your pain
Listen for my scream, my love
I feel the pain the same

Get the hell away from her
I've loved her from the start
I'm not yet through holding her
You monster without heart

Get the hell away from her
You'll never win her heart
Our soul has grown to be just one
As one it will not part.

"Where do I start? What do I do first?" After crying out these words, Lisann Charland reached out for support.

I started by notifying my out- of-town family and friends that the disease had recurred. The support and encouragement I got from both near and far away was unbelievable. My Buddy was a rock. I knew he hurt just as much as I did throughout this whole nightmare. I felt blessed and lucky to have him and all the family and friends in this great time of need. My sister and brothers were devastated. My in-laws were wonderful as usual. My employer advised me I could work whenever I wanted. Everyone was very supportive, and offered to help me in any way I needed.

Like most of the others, Lisann had someone she wanted to protect from hearing the bad news.

I could not tell my mother I had the recurrence because I did not have the heart and strength to explain it to her on the telephone, and not being there to hold her hand for her sake and my sake.

In the ensuing time, as Lisann shared her distress with family and friends, she wrestled with trying to find some meaning in what was happening to her.

I cried and cried alone and in front of people. I felt cheated once again. I felt I was a good and honest person, and yet, was being punished somehow. I had to talk to myself daily and convince myself that "this too shall pass," and that I was going to get better with the treatment. Indeed, my faith kept me going. I felt I was going to be fine. God was really testing me again to see whether I could take it.

Like Lisann, Barbara Ragland heard about her recurrence at work. Although her surgeon had already told her he thought the two lesions she'd found on the old surgery site were malignant, Barbara had still held out hope that he was wrong. It was hard to believe that the cancer had actually come back after 19 years.

I sat for a moment at my desk and tried to catch my breath. I remember I was shaking. Then I walked in to tell my supervisor in the next office. I had a few moments in which my voice started shaking and I cried for a little bit. Since there wasn't really anything anyone could do, I went back to my office and tried to resume working but my mind was a blur.

Divorced since her primary diagnosis in 1974, when support groups for breast cancer hadn't even existed, this time she determined to reach out.

I told everyone: family, friends, faculty and students that I worked with. For some reason, the burden seems lighter by not keeping things pent up inside. I've always been straightforward with my family and I think it is a comfort to them knowing I'm not withholding information from them.

With fellow workers, I wanted them to know directly from me, not from whispering around the edges trying to find out what my situation was. I also preferred that they know I was away from work for a scan or doctor's appointment–not for a vacation. I found so much caring and compassion from students and faculty. Some would make a point to come in and just give me a hug or to tell me they were praying for me. This was a support group–certainly not a group who had "been there," but a group that really was concerned.

At the time of her primary diagnosis, Barbara had sought support from her church. Church elders had joined her in prayer at her bedside before a second biopsy, and hailed the benign results as a miracle. As a single mother and sole support of her three children, she had prayed then that she would live long enough for her youngest, then five years old, to reach age eighteen.

Everyone knew of this prayer. When my son turned eighteen, we all rejoiced and I have thanked God ever since for allowing this to happen. I taught Sunday School for the next eleven years. When the cancer recurred, my youngest was twenty-five. Although I was absolutely crushed with the news, one of my first thoughts was that I had lived seven years past the time I had prayed for and was determined to live. If I beat this thing before, I know there's a good chance I can again.

Penny Lebow knew just what she needed after the impact of discussing her treatment with her oncologist.

I remember being in the doctor's office at the treatment conference, trying to hold a stiff upper lip so I could grasp everything being said, although having moments of panic overwhelm me. After leaving, I remember going to our car with Mark, knowing I needed to cry and knowing Mark did too, but unable to do it with the abandon I needed in the car. The only thought I had was about my closest friend, Leora, who lived and worked nearby, imagining her big warm arms around me, creating a safe space to let go. I called her up immediately and went to her house where I related the news and we all cried together.

For Pam Hiebert, the diagnosis of recurrence provoked an existential crisis.

On the day the surgeon said metastasis, I experienced the lowest and most frighteningly intense Thursday night I have ever felt in my entire life. I stood at the living room window and stared out onto the street below for hours. I groped desperately for understanding. I remember trying to rationalize, thinking how people with AIDS were actually worse off than me. I remember thinking about all the people who have lived on this earth and how everyone eventually died. I remember the beginnings of my own awareness that I would also die.

From that awareness came a spiritual awakening that would transform Pam's experience of her illness.

It was at this darkest hour of my life that I found spirit. She rose in me like a mother protecting her young. It was in this darkest hour that I began to formulate my own battle. I let go of what I had been holding and began to plan how I would die–but die a warrior's death–I would lay claim to this diagnosis and I would launch war. I would die a death befitting a warrior, an amazon, a goddess of fire and sword. I would name my dying and lay claim to its process. I mentally moved through a spirit world of basic survival.

The need for connection with and support of the women's community she and Sylvan were part of came next.

It was at this time that I called forth my hair-cutting ceremony to prepare for battle. To strip my body clean. To disengage from earthly burden. To prepare my body for engagement of the enemy.

Many women elect to shave their heads before their chemotherapy-induced hair loss begins. Not only does it reduce the mess from falling hair, but it also exerts a measure of control, which becomes a vital part of coping. Drawing her friends close to her, Pam created a moving ritual, transforming a loss filled with fear into a challenging engagement.

Our living room was filled with women from all walks of life. Word had gotten around that I was holding a hair-cutting ceremony and all women were invited. Many women from the choir, some from work, some from my church came. I was the warrior Queen, sitting at the head, perched upon my royal throne. I spread a blanket before me with all the trinkets of my past. People had brought things too, a stuffed kangaroo, feathers, crystals, transformation stones. I talked of battle and shedding my skin. Each woman in the room in turn arose, came toward me, and cut a piece of my long straight hair. Then it was shaved along the sides and the back and pulled into one giant long mohawk. I dipped my finger in a bowl of silver glitter and drew streaks of warrior's paint across my face, vowing to fight to the finish in whatever battle was set before me.

Bob Stafford felt a need for ritual as well. By the time Bob went to see the oncologist, he had already inferred, from what his internist had said, that his breast cancer had recurred in his hip.

I decided to do something special that day. My wife wanted to go with me to the oncologist to hear the news. On the way I stopped at the church of a pastor friend. We told him where we were going and why. I then asked him if he would do a wedding ceremony for my wife and I there and then. Unbeknownst to her I had bought her a ring and wanted to redo my marriage vows to her. The church was beautiful because it was decorated for Christmas and there were more flowers then than when we were first married. My pastor friend's wife served as our witness.

Later, they were able to talk about what lay ahead.

My wife's biggest concern was whether I would be around to help get our two children through high school. Our son was 10 and our daughter 13 at the time. We were at an emotional crossroads, facing terminal cancer and celebrating the renewing of our marriage vows. It didn't matter if you laughed or cried because you had reason for both.

After an ultrasound test confirmed that there was a mass on her ovary, Lucie Bergmann-Shuster and her husband, Cy, decided nevertheless to continue their plans for Thanksgiving with out-of-town friends. The surgeon's appointment would be on Monday; and there was the weekend to get through. But they hoped for their enduring connection with the natural world to uplift them and grant them some peace.

During a long, boring stretch of road on their way towards Yosemite National Park, well known as a hunting ground for hawks, Cy and Lucie were keeping an eye out for birds of prey.

Suddenly, a hawk dived at our windshield, veering off a few feet before impact. It sent chills down our spines and no sooner did our suddenly jangled beings recover, than yet another bird of prey crossed the windshield again only a few feet away from the moving car. It was as though the two flight patterns were making a sign of a cross in our path. My husband and I looked at each other in amazement and I said, "I think the spirit world is trying to tell us something." After a long silence, I said to Cy, "I think that perhaps the hawks are my spirit beings after all. Why else would they come so close to me at this loaded and uncertain time in my life?"

We all got to go for hike in Big Trees to look at the majestic sequoias. The ancient, giant trees allow for a serenity and peaceful acceptance of timelessness within a world of decay while heralding new growth in musty, pine-scented peat. Both of us savored the greater calm and let it carry us through to the Monday doctor appointment.

Then, three days before the exploratory surgery that would give Lucie a definitive answer about an ovarian mass found in her scans, Lucie and Cy were unexpectedly invited by friends to help them check out a sailboat they were thinking of buying.

It was a little miracle of finding joy in unexpected places and the prospect of the sail helped us both getting past Saturday. That Sunday, the weather which had been iffy and overcast most of the week with occasional showers, turned magically warm with just the right kind of wind to allow the testing of all the major sails, of which there were many since this was a yacht racing sloop. It felt so good for me to know that my body was still there for me and vital while trimming the sheets for this big 50-foot vessel. In the course of the sail, I told my friend June that I would be going in for surgery and that it might very well be cancer and if so, that I might not live very much longer, so I thanked her for this wonderful moment in time to be sailing without worry on this absolutely gorgeous day on the Monterey Bay.

While our friends, the prospective buyers, negotiated around the next step in the business transaction with the broker, my husband and I took in the waning light of the day, the scent of the salt air and the calming ache of our bodies as our feet accustomed themselves to solid ground. We knew we would sleep well this coming night having cherished the day both with our minds and our bodies.

I do not want this dance

For each of these people, this was the beginning of an ongoing adjustment process that included a search for meaning within the experience, as well as an attempt to regain mastery over the recurrence and over life in general. If you had spoken to any of them a week or two after their diagnoses, resilience might be one of the last words they would have used to describe themselves. Nevertheless, as they moved from shock and grief to the first steps of coping, resiliency was much in evidence.

R. S. Lazarus and S. Folkman, researchers in coping theory,5 distinguish between what they term "emotion-focused coping," a process of inner reconciliation where the person is able to alter the meaning of the situation, and "problem-focused coping," which defines the problem and its possible external solutions, weighs alternatives, works to change environmental stressors and expectations, and learns new skills and behaviors. Throughout the book, we'll see inner and outer processes working in tandem, for both are crucial.

This chapter has looked primarily at "emotion-focused coping" in the early days following a diagnosis of recurrent breast cancer. In each of the stories above, an initial emotional and spiritual crisis moves toward some degree of resolution through an inner or outer action. Most of the time, these actions are related to the bonds between people and to some kind of spiritual or creative connection.

For Glenn, joining the Internet Discussion List and expressing his deep love for his wife there in poetry and prose helped him connect with others and sustained his strength in supporting her. Lisann's reaching out to friends and family, and grappling with her religious beliefs, brought her through the worst of her despair. As a woman alone, Barbara's decision to reveal her situation to friends at work and in her church, as well as her family, made her feel cared about, and allowed her to perceive the intervening years since her primary diagnosis with gratitude, rather than bitterness. Penny and Mark knew that they needed to grieve with their friends. Pam's hair-cutting ceremony surrounded by her community of women provided her with a means to reframe her upcoming struggle in terms that gave her optimism and strength. Through renewing their marriage vows in the church where their wedding had been, Bob affirmed that he would be there for his wife, Sherry, and their children as long as he was able. Lucie and her husband, Cy, passed the difficult time before test results and surgery by seeking restoration and spiritual connection in the woods and on the water, in the natural world they loved, and in each other.

All of these people moved past the shock and grief of diagnosis to do something to regain the control they had lost, or to seek a deeper contact with others or with their own sources of personal meaning. By doing so, each took a first step in the direction of coping and acceptance.

When Pam Hiebert's tumor markers were on the rise for the second time, after her bone mets had successfully been controlled for over three years, she wrote these lines:

I cannot run, I know that from the last encounter.
There is no defense, but to seek to pass through.
My pulse is strong, the months I have spent in healing
Are to be tested now.

I do not want this encounter, this unwelcome second half
Stalking me–stinging me with pain, tearing at me,
Ripping my years away–

I do not want this dance.

Notes

  1. Backman, Margaret E., The Psychology of the Physically Ill Patient:
    A Clinician's Guide
    (New York: Plenum Press, 1989), p. 8.
  2. Ibid., p. 8.
  3. Worden, William J., "The experience of recurrent cancer,"
    Ca, Vol. 39, No. 5, p. 305, September, 1989.
  4. Ibid., p. 305.
  5. Lazarus, R. S., and Folkman, S., Stress Appraisal and Coping
    (New York: Springer-Verlag, 1984).


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