Can Survive: Reclaiming Your Life After Cancer

1 My Story as a Survivor

As the plane made its final approach into Pittsburgh, I peered out the window at the mosaic of shimmering lights below. From my aerial viewpoint, I tried to form a first impression of the city I would soon be calling home. The pilot banked hard, and the soft diffusion of city lights suddenly gave way to the night sky. I sat back in my seat, closed my eyes, and focused my thoughts on the days that lay ahead.
With this trip, I felt certain I was finally free of the past and the threat it had once held for me. Four years earlier, in 1975 at the age of seventeen, I had been diagnosed with rhabdomyosarcoma, a rare form of cancer that attacked the soft tissue in my right thigh. With that diagnosis I embarked on a year-long medical odyssey, and learned firsthand what it meant to live with the imminent threat of dying. As grim as the experience was, I emerged from it with new eyes. The world was somehow more vivid to me, richer and more sharply edged. I was exhilarated with the simple joy of being alive and in good health.
But tonight I was also a little scared. I was flying to Pennsylvania to meet my fiancé's parents. As significant as that ritual is for most people, to me it held an even deeper meaning. A commitment to marriage meant a commitment to the future, a personal acknowledgment that I was going to live and thrive. I'd finally put cancer behind me.
Michael, my fiancé, was at the airport waiting to greet me. We had met more than a year before at the University of Colorado- Boulder, shortly after I'd returned to college following cancer treatment. I was then a sophomore intent on getting a degree in business. Michael, a senior, was studying to be an architect. We were introduced through mutual friends, and in two months' time we were dating exclusively.
Michael and I were typical college kids, full of hope and enthusiasm for the future. He had no trouble accepting my medical history, nor did any of my friends. Although I'd had cancer, I didn't see how it could present any obstacles to the plans I envisioned. If anything, beating the disease had made me more resilient and confident in my abilities.
The fall semester arrived, and with it came the realization that Michael would soon be graduating. He planned to move back to Pittsburgh and join his father's architectural firm, where he would be groomed to eventually take over. But Michael and I were very much in love; there was no way we could be apart. We talked about a future together, and then one day, ring in hand, he proposed.
As the chill of winter settled on Boulder, I began to make plans for the wedding and our life together. Michael and I decided that after the wedding we would move back East and I would finish school in Pennsylvania. But I was apprehensive. I'd never even been to Pittsburgh.
"That's easy enough to arrange," Michael said. "Why don't you come home with me for Thanksgiving? You can meet my parents and get to know the city." And so I found myself in Pittsburgh on a cold and moonless November night. As Michael drove away from the airport, I confided how anxious I was. "Just relax and be yourself," he said with a smile. "The rest will work itself out." Although it was late when we arrived, his parents were waiting up for us. We sat in the kitchen and chatted. Michael and I talked excitedly about our plans for the weekend and the neighborhoods of Pittsburgh we hoped to scout for houses. His parents said very little, and I thought it odd. I'd always known Michael to be open and affable, yet his parents seemed subdued, almost distant. But I was tired and more than a little nervous. So I dismissed those first impressions, sure that a good night's sleep would give me a fresh take on my prospective in-laws.
The following morning, Michael's mother agreed to join us for a tour of the city. When we stopped at a restaurant for lunch, she and I sat alone for a few minutes while Michael parked the car. We were trading polite "getting-to-know-you" small talk, when out of the blue she asked, "So what's it like living with a time bomb inside you?" The question stunned me. Was she joking? A look into her expressionless face told me that this was no attempt at gallows humor. Unsure of what to say, I smiled nervously while shrugging my shoulders, and frantically glanced around the restaurant for a sign of my fiancé.
But Michael's arrival did little to disperse the tension between his mother and me. As soon as we returned to the house I told him what had happened. His reaction surprised me. Instead of becoming angry at his mother or empathizing with me, Michael responded with a dismissive shrug. "Oh, Susan," he said inn his breezy manner, "you're being too sensitive. I'm sure she was just trying to make conversation." Perhaps he was right. Although I was still upset, I wasssss determined to overlook the incident.
That evening, Michael's father took us all out for dinner. Michael and his mother were engrossed in conversation when I turned to my future father-in-law and began to chat him up regarding our wedding plans.
"You know, Susan," he began slowly, "I'm sure you can understand my concern . . . as Michael's father . . ." He stared down at the food on his plate and nervously poked at it with his fork. "It's just that . . ." He seemed to want to say more, but was clearly having trouble finding the words to explain himself in detail. Instead, he simply cut to the chase. "It's just that . . . well, I don't want my son to be a widower." In the abrupt and awkward silence that followed, I struggled with what to say. I was young and scared and completely intimidated by his attitude. I knew that if I tried to defend myself, I'd fall apart. Instead I let the remark pass, and, turning to my fiancé, quickly changed the subject.
Once Michael and I were alone, I recounted the remark made by his father. My fiancé brushed it aside with a wave of his hand. Although I assured him that this was no exaggeration, Michael felt that I was overplaying the incident. He could not, or would not, confront his parents. He continued to defend them, obliquely suggesting I be more grown-up about it. I told him I wasn't comfortable staying in their house and would prefer to spend the rest of the weekend in a nearby hotel. I went upstairs to pack, hoping he would join me.
But Michael remained downstairs with his parents. I finished packing my bags, slipped off my engagement ring, and placed it on the bedside table. Shattered and demoralized, I flew home the next day to Palo Alto, California, and my family.
At the time, Michael and his parents' behavior seemed incomprehensible and unforgivable. It wasn't until years later, when a mutual friend mentioned that Michael's uncle had died of cancer shortly before our engagement, that I began to understand the emotional subtext of that weekend in Pittsburgh. My fiancé had never mentioned his uncle's long illness, which had apparently taken a tremendous toll on the family. I now realized that Michael's parents wanted to protect their son from further pain, and in their eyes my medical history jeopardized his happiness. That in turn explained Michael's actions-or more precisely, his inaction. He was undoubtedly afraid that our marriage would anger his parents and was paralyzed by the choice he had to make.
In the months that followed, I did my best to forget about Michael. I moved to San Francisco, where I took a job as a sales representative for a large cosmetics firm. It wasn't long before I formed a close friendship with Ellen, a young colleague who worked alongside me in the marketing department.
Our regional manager informed us that once we had completed our training we would be promoted and given our own territories to handle. I was looking forward to my promotion since I loved to travel. When a territory opened up in the Southwest, Ellen and I learned that the firm planned to cover it with someone from our office. The company was conducting interviews at its New York headquarters, so we both cleared our schedules for the trip.
"I've already booked a flight," Ellen announced when she dropped by my desk one morning. "I'm leaving the day after tomorrow. What about you?" I couldn't leave until the following week. I wished her luck and told her not to be nervous.
I called Ellen the night she returned home, hoping to pick her brain about the interview. She sounded surprised to hear from me.
"So how did it go?" I asked.
She hesitated. "Well, I think I got the job." "You mean they've already decided?" "Yes. I guess they have." I congratulated Ellen, but my enthusiasm was muted. Why hadn't I been given a chance to interview? The vice president of marketing had said he wanted to talk to both of us. What caused him to change his mind? I started asking questions and checking around. One day while having lunch with Kay, a company manager, I found the answer.
"I probably shouldn't even be telling you this," Kay began, "but it was such a lousy thing for them to do. I really thought you should know." She paused and leaned forward. "Ellen got the job because she told them you had cancer." My mouth was dry, and I suddenly found it difficult to speak. I was as confused by Kay's revelation as I was shocked by Ellen's betrayal. My bout with cancer had been years before. The success of my treatment appeared total, my long-term prognosis a relative certainty. My doctors had even used the word "cured." I simply didn't understand. How could cancer still be a factor in my eligibility for promotion? Kay must have seen the bewilderment in my face.
"Ellen said that because you'd had cancer and it had affected your leg, you wouldn't be physically able to handle all the traveling the job required." Like a blow on a bruise, her words revived the pain and anger I'd felt in Pittsburgh. How many years would have to pass before others saw me as a normal person? I knew that cancer was a chronic illness, but then, so was heart disease. And yet, I told Kay, coronaries weren't preventing many of the men we knew from getting ahead. Why should cancer be any different?
"The Big C scares most people," Kay observed. "They still think it's a death sentence, and they don't know how to deal with someone who's had it. If I were you, I'd keep my medical history under my hat. Save yourself the grief." But Kay wasn't me, and she'd never faced a life-threatening illness. I'd fought hard to beat cancer, and I was fiercely proud of my victory. Yet I knew that Kay was right. There were others who viewed my experience as a taint rather than a triumph. During my recovery, I had made up my mind that I wasn't going to let the disease limit my goals and ambitions. But now, with a growing sense of outrage, I realized that cancer was continuing to reroute my life and cloud my future. I wanted it to stop.
I knew I had to leave the company. My self-esteem had been eroded, and I didn't have the fortitude to fight back. I'm not sure I would have known where to start.
I eventually found another job promoting a new line of cosmetics. But I was no fool. When people at work inquired about my treatment-induced limp, I told them it was the result of a skiing accident. I hated having to lie about something of which I was in no way ashamed, but I knew all too well that the truth could sabotage me. So I tucked that part of my life away, concealing it from others as if it were something sinister.
By my twenty-fifth birthday, I felt as though I'd firmly established myself and was fulfilled in both my personal and professional life. My cancer history continued to shadow me, however. The disease had created fissures in my life that I'd spent years trying to cover up, and I was beginning to understand how it had deeply affected my self-image. I knew cancer was a part of my identity, yet I felt tremendous pressure to deny that aspect of my life. I was strong, healthy, and ambitious. But was I really a "well" person if others saw me as less than healthy? And what if the cancer came back? Was I wasting my time planning for a future that might not happen?
It had taken me several years just to begin asking myself these questions, and as I sought answers the view I had of myself began to change.
To help reestablish myself, I moved down the coast to Los Angeles. I was no stranger to L.A.; I'd lived the first eighteen years of my life there. I enjoyed being back among old friends and familiar haunts. I landed a position as special events director for a large department store. The job was exciting, and I funneled most of my time and energy into it.
Despite my fresh start, I continued to feel strangely unsettled. I couldn't seem to shake a pervasive sense of frustration and anger, an accumulation of unresolved emotions that I knew had their genesis in my experience with cancer. The permanent damage caused by treatment fueled my anger. Cancer had altered my body image, and I had yet to accept and fully integrate those changes. My medical history had at various times undermined my employability, my insurability, even my social life. My old approach to dealing with the disease-to dodge and deny-didn't seem to be working anymore.
A sense of isolation compounded my anger. I hadn't found anyone in Los Angeles I could talk to about my problems as a survivor. I started seeing a psychotherapist, and that helped. But as understanding as she was, my therapist couldn't fully grasp the inner turmoil generated by my cancer experience. Friends were no different. "Hey, you survived," they would chide me. "You shouldn't be complaining. You're one of the lucky ones." I couldn't argue with their logic. But it didn't alleviate the feelings I had, and it certainly didn't diminish my anger.
A friend suggested I look for answers in a cancer support group. That made perfect sense to me. If I was going to find empathy anywhere, I would find it among people whose lives had also been touched by cancer. I attended one group, and another, then a third. However, these groups were composed of patients, people who were still fighting for their lives. My needs were different. I had won that fight. No one could fully appreciate how I was continuing to struggle with the ramifications of the disease.
No one, that is, except Lisa. She understood because she too was a survivor, though her battles were much more harrowing than mine.
I'd first met Lisa Jamison when I was eighteen, shortly after finishing cancer treatment at Stanford Medical Center. Once I had recovered enough to return to college, I arranged to drive back to Boulder with an acquaintance. On the way, my traveling companion suggested we stop in Lake Tahoe. She had a good friend living there whom she wanted me to meet, someone who had also recently completed cancer treatment.
Lisa and I hit it off immediately. She was my age and, like me, had undergone treatment at Stanford. Diagnosed at age fifteen with malignant teratoma, an ovarian cancer, Lisa underwent two years of aggressive therapy. Now she was in remission.
We spent hours comparing notes, talking about the doctors we both knew, and swapping war stories about our cancer treatments. We also shared a mordant sense of humor about our post-treatment complications. We'd joke about how, thanks to the effects of radiation treatment, we could now get a tan in two minutes. Lisa especially enjoyed describing how she used to rattle friends by telling them to turn off the lights so they could see her glow in the dark.
As I left Lake Tahoe, we agreed to stay in touch. And we did, running up exorbitant telephone bills in the process. Lisa and I shared all that was transferable of our cancer experience. We had both seen relationships change, career goals become distorted, health insurance evaporate-all because of cancer. We worried about recurrence, our prospects for parenthood, and the long-term consequences of treatment.
For Lisa, those consequences were already formidable. Her cancer had been particularly virulent, and in a last-ditch effort to turn the tide, she had received extremely high doses of radiation. In her case, however, it had been too much of a good thing; the radiotherapy had caused severe adhesions in her abdomen. Adhesions also affected the arteries in her legs, progressively diminishing her ability to walk. Although she had numerous operations to repair the damage, nothing seemed to offer long-term relief.
"I think my radiologist has a crush on me," Lisa would joke from her hospital bed. "Why else would he have rigged it so I have to come back here all the time?" Lisa had a marvelous gift for disguising adversity, but sometimes the painful ordeals would overwhelm her. "If this is the cure, give me back the disease," she once remarked, her voice cracking with bitterness. But those moments were few and far between. Even during her darkest times, Lisa's irrepressible optimism would eventually burst through the gloom.
But I was alarmed. Why hadn't Lisa been warned that these complications might arise? What sort of long-term effects of treatment might I expect in the future? The need for answers consumed me. I scoured libraries for books, articles, reports, anything that would shed light on our concerns as survivors. Nothing came close to providing adequate information. Every book I read on cancer dealt with the immediate needs of patients fighting the disease, detailing modes of treatment, emotional coping, and the issues of death and dying. But what about people who were living after cancer? Scores of books existed on the lifestyle problems faced by cardiac patients, diabetics, and alcoholics. Why weren't there similar books providing practical, long-term support for cancer survivors? I told Lisa about my futile search for information. "It's as if we'd been dropped in the middle of a desert," she observed, "and left to fend for ourselves." By 1985 Lisa's health had further deteriorated and she was back in the hospital, this time to undergo a colostomy. I felt helpless watching her struggle to recuperate from yet another operation, but I did what I could to cheer her up. "When you're back on your feet," I told her, "let's plan a vacation together. Somewhere sunny and warm, where we can kick back and relax." Two months later, Lisa called me from San Francisco. "Palm Springs," she announced. "You suggested we take a trip together, and I'm ready to go. Next weekend, okay?" It was the perfect prescription. The hot dry weather lifted Lisa's spirits and seemed to help her feel better physically. On our first day in Palm Springs, we talked long into the night about our lives and hopes for the future. As always, our conversation inevitably circled back to the subject of surviving cancer. As we talked, we vented our frustration. Why wasn't anyone addressing these issues?
Lisa reminded me. "Susan, you have to remember that the medical community is focused mainly on treating the disease, not what comes after the cure." Between sips of iced tea she added, "If we want answers, we may have to provide them ourselves, or at least start the discussion. I think it's time we stop complaining and start doing." I knew she was right. If we couldn't find a support group for survivors, why not create one ourselves? On the spot, Lisa and I decided to join forces and do just that. We began brainstorming, imagining an organization that would provide its members with peer support groups, professional counseling, and educational programs.
We continued our brainstorming session the next day. Lisa sat in the hot desert sun, all but hidden under a big floppy hat, a yellow legal pad propped on her knees. On her notepad she outlined goals and jotted down objectives, giving shape and structure to our ideas. Many hours and legal pads later, Lisa abruptly looked up at me and said, "Cancervive. Let's call it Cancervive." By the end of that weekend we had laid the groundwork for our new organization. We drove back to Los Angeles, and Lisa flew on to San Francisco. We were feeling exhilarated and hopeful, eager to get started on making our weekend dream a reality.
Then tragedy struck. On her return home, Lisa's complications flared up and she was forced to reenter the hospital. The massive dose of radiation she'd received was now causing the major arteries in her pelvis and legs to close off. First a foot had to be amputated, then her entire leg. Several months later, doctors removed the other leg. I flew up to San Francisco, devastated by what had happened to my friend. I was also terrified. How could I be sure that what was happening to Lisa wouldn't one day happen to me?
Lisa saw the fear in my eyes. "Don't worry, Susan, you're going to be okay. After all, I'm counting on you to get Cancervive going." Then she smiled. "Just promise me you'll hold on to that leg of yours, all right?" Lisa's ferocious fighting spirit gave me the inspiration I needed. I returned to Los Angeles and immediately started organizing the paperwork and getting the word out about a newly chartered nonprofit organization called Cancervive. I contacted newspapers, magazines, television stations, and hospitals. I was sure that hundreds, perhaps thousands, of survivors were encountering problems similar to those Lisa and I had faced. It was just a matter of reaching them.
A few weeks later I was asked to appear on a national television talk show. The simple act of telling my story had an amazingly cathartic effect, not only on me, it seemed, but on other survivors who saw it. After my appearance the station was swamped with calls from survivors who had telephoned to say, in essence, "That's me. That's my life. Just change the name." Lisa and I were elated by the response. We knew then that our reasons for starting Cancervive were valid.
I decided to keep the first support group meeting small and informal so that those attending would feel comfortable about speaking their minds. The group that gathered in my living room on a warm July evening in 1985 included two oncology social workers; Nadia, an eight-year survivor of Hodgkin's disease; and Jon, a young man who had finished treatment for a brain tumor six months before and was now in remission. I had no agenda planned. Instead, I suggested that we talk about our experiences as survivors, raising any and all issues that concerned us.
At first it was hard for Jon and Nadia to talk about themselves. Jon explained why.
"I'm uncomfortable talking about the negative aspects of surviving," he said. "I certainly don't want to sound like some kind of ingrate." "That's okay," I responded. "Then if you don't mind, I'll start." I talked about my life, my bout with cancer, and the problems I encountered once I'd left the hospital. It wasn't easy speaking to a group of strangers, confiding some of my deepest fears and relating the pain and anger I'd kept bottled up inside for ten years. And yet, even though I hardly knew these people, I felt they weren't really strangers. They seemed to understand what I was saying and how I was feeling in a way only a survivor could.
"I don't think I'm alone," I said in conclusion. "I think these issues affect all survivors in one way or another, regardless of age or prognosis. I'm worried that other people will go through what I went through, and that they may take too long, as I did, to come to terms with the legacy of their cancer." The room was silent for a few moments. Then Nadia spoke. "My boyfriend and I have talked about maybe getting married in a year or two, and it's made me think a lot about whether or not I can have children. I recently asked my doctor about it. He said that treatment may have left me infertile; he'd have to do some tests to be sure. It took a while for that news to sink in, but once it did, I cried for days. Now I'm wondering, how do I tell my boyfriend? I'm so worried that it will change everything." Jon nodded and said, "Now that I'm in remission, I can't stop thinking about a recurrence. With my kind of cancer, there's a good chance of that happening. My doctor says I shouldn't worry about it, that I should just put it out of my mind and get on with my life. But he isn't offering me any guarantees of a cure either. At least when I was getting radiation, I felt I had some protection. Being off treatment scares the hell out of me. I keep waiting for the other shoe to drop. How am I supposed to deal with that?" I knew there were no easy answers to Jon's question, or Nadia's, or mine. But as we talked, a bond began to form among the members of this tiny nucleus of a support group. The more open we were about what had happened to us, the more unburdened we felt. I could empathize with Nadia's dilemma because it was my concern as well. I knew Jon's fear because I had faced it too. Our lives touched and crossed at a juncture called cancer, and it was there that we recognized ourselves in each other.
This was the beginning of Cancervive, the organization Lisa and I hoped would represent the needs and concerns of all survivors. The problems that Jon, Nadia, Lisa, and I faced weren't unique; they were just a few of the challenges that form the backdrop to life after cancer.

Copyright (c) 2000 by Susan Nessim and Judith Ellis. Reprinted by permission of Houghton Mifflin Company.