The following is an excerpt from The Big Ordeal: Understanding and Managing the Psychological Turmoil of Cancer publishing February 23, 2021 from River Grove Books and available everywhere books are sold.
Praise for The Big Ordeal
“The Big Ordeal addresses a critically important need for cancer centers and their patients to better understand the emotional arc of the disease and how to support patients through what is a physically and psychologically challenging experience.”
—STEVEN K. LIBUTTI, MD, FACS, Director, Rutgers Cancer Institute of New Jersey; Senior Vice President, Oncology Services, RWJBarnabas Health; Vice Chancellor Cancer Program, Rutgers Biomedical and Health Sciences
“While important strides in cancer care have led to substantial increases in survival, the personal experience of having cancer remains extraordinarily challenging. In The Big Ordeal, Cynthia uses her knowledge as a cancer patient and her skills as an observer to present a message of understanding and hope for all those touched by the cancer experience.”
—GREG FRICCHIONE, MD, Professor of Psychiatry, Harvard Medical School; Associate Chief of Psychiatry, Massachusetts General Hospital; Director, Benson-Henry Institute for Mind-Body Medicine
SHOCK AND DISMAY: WHEN BAD NEWS HITS
“Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.”
—Marie Curie
For centuries, a cancer diagnosis was synonymous with a death sentence. As early as 3000 BCE, experts declared “There is no treatment,” and patients were told to prepare for an untimely, sometimes painful death. That was still true for 50 percent of cancer patients as recently as 1975. But much has changed in the intervening decades about our ability to find and treat cancer. Earlier detection and a richer understanding of the disease itself have led to significant improvements in our prospects. According to the National Cancer Institute, mortality rates from the disease fell 29 percent between 1991 and 2017 in the United States, and today, five-year survival rates for the two most common cancer sites, prostate and breast, are upward of 90 percent. For the five most common types of cancer combined—which account for more than half of all new cancers—66 percent of patients now survive.4 Even those statistics are based on history, not current or future cancers, so they underestimate our chances of recovery. Given recent advances in immunotherapy and precision medicine, which are dramatically changing how some cancers are treated, there is ever more hope for survival. Of course, no two cancer patients are alike. Health at the time of diagnosis, care teams, responses to treatment, and a million other variables differ, but a cancer diagnosis is no longer an automatic death sentence.
Despite these improvements, our gut reactions haven’t changed. When we hear we have cancer, we still fear we will die. Whether it is rational or irrational, that fear is visceral, instant, overwhelming, and almost universal. Patients who are otherwise healthy and have an excellent likelihood of beating the disease burst into tears and find it hard to imagine overcoming their emotions, let alone the disease. Or they sit in stunned silence, unable to hear the doctor’s reassurance or advice.
A Pocket Full of Death
Smart, outgoing, athletic, and good-looking, Carl knew he was one of the lucky ones. He had a great life. Opportunities came his way unbidden. He had a wonderful wife, Rebecca, and two young sons who were happy and healthy. They had the good fortune, the love, and the fortitude to enjoy life. “It was as if there was a protective shield around us, guarding us
and keeping us safe,” he said. He knew others who struggled with life or suddenly had their lives upended or run aground, but that seemed far from his reality. His was a privileged view: that life had a way of working out fine. Until he got the news that shattered his protective shield.
Rebecca had noticed a spot on my arm that didn’t match the rest of my freckles. I spend a lot of time outdoors, and given how fair I am, in my adult years I used plenty of sunscreen and had the idea that was good enough. When I went to get it checked out, the dermatologist said she thought “it was nothing,” but biopsied it anyway “just to be sure,” and made an appointment to share the results. I assumed that she was right. It was just a funny brown spot.
When I was back in her office the following week, she said, “It’s melanoma.” I really must have known what melanoma was, but at that moment, I truly couldn’t place the word, so I asked her, and she said just two words, “It’s cancer.” This was at a major academic medical center, and I wanted to know how they were going to fix it, so I asked her about the treatment. “Well, for melanoma,” she said, “we have no effective treatment.” She seemed uncomfortable giving me the news, handed me a referral to the local cancer center, and left the room. This was 2002, and even early experimental treatments were unproven. Right away, I assumed I was going to die. From the moment I heard I had cancer, my new reality seemed discontinuous, severed from all my life before. But at the same time, weirdly, it also seemed like I now knew my life story, complete with ending. The idea that I had cancer and there was nothing to be done (I always knew how to take action) just flipped me out.
Carl panicked. The thought that his life was over was horrifying enough, but the idea that he would leave his wife and kids, still so young and dependent, was heart-wrenching. He tried to reach Rebecca at home and at work with no luck—she was running around making last-minute preparations for their son’s middle school graduation party taking place later that evening, and no one carried cell phones in those days. Leaving the dermatologist’s office, he went straight to the office of a doctor friend, hoping for some uplifting advice, but he wasn’t given much solace there either. “The die is cast,” he was told, leaving him even more despondent and terrified.
I walked into the party a couple of hours later and was struck by an incredible sense of isolation. Here I was in this beautiful place with the afternoon light bouncing off the river in the background, and all these happy people, so many friends, going about life as if everything was fine. No one knew what I was facing; no one could see that my whole world had changed—or what was left of it. I didn’t even know if I would see my second son reach this milestone. I felt like the walking dead.
He wasn’t really alone; his wife was loving, full of advice and support, his sons a constant source of energy and joy. But he felt that no one fully understood his fear, the impending sense of doom. It didn’t help that he was living temporarily in Boston, away from most of his friends in his hometown, New York, or that he had left his academic job just weeks before. The lack of a daily routine created a sense of suspended animation—unstructured days spent largely alone. He used this time to research doctors, eventually finding a surgeon who gave him confidence, and a clinical trial for a new treatment, interferon. But when he sought advice about whether or not to participate in the trial, the best the surgeon could say was, “There are probably twenty experts in the world, and they don’t know what to do. So you just need to do what feels right,” confirming for Carl the sense that his cancer was his responsibility alone.
I remember going down to New York to meet with the doctor who had come up with the treatment protocol for the clinical trial. I brought copies of all my biopsies, all my medical records, even the glass slides with tissue samples, and stuffed them into the pockets of my vest. I took the subway to the doctor’s office and as I stood on the crowded train and patted my pockets to be sure everything was there, I felt like a suicide bomber—the weight of those samples and reports was so great, so secretive and explosive. Everyone else was going about their own business, living in their own worlds, and here I was with a pocket full of death. No one knew what I was going through or what might happen next.
Back when I had just turned thirty, I came down with a potentially fatal heart problem overnight. That came out of the blue as well, and the doctors were worried, but it didn’t threaten to invade other organs. And I could at least partly understand the specialists’ explanations. And, happily, it resolved in several weeks. But this was different. This was ambiguous. The medical science seemed like voodoo. This was cancer.
What is it that makes cancer so scary? Part of it is the stories we have all seen and read—the ancient history and the all-too-recent accounts of someone who didn’t make it. But a big part of it is the uncertainty: not knowing if you are going to survive, not knowing what the course of treatment will be and how you will respond to it, and not knowing when—or if—you can ever feel safe from cancer again.
Most cancers can’t be fully evaluated at the time of diagnosis. A melanoma, a lump in the breast, an irregular blood test, an abdominal mass—we are told they are cancer, but not what that really means. Some cancers grow quickly and seem to spread like wildfire; others are slow-growing and noninvasive, even chronic. Some require extensive treatment and never fully resolve, while others are dispatched with minor surgery or daily medication. This variability, and having to wait for days or even weeks knowing we have cancer but not yet knowing how bad it is, heightens the sense of uncertainty and fear. Further testing and scans help inform us how big, how deep, how widely spread the cancer may be, but often it is not until doctors have surgically removed the tumor, gotten “clean margins,” checked adjacent lymph nodes, and received reports back from the pathology lab that they can begin to understand the true nature of the disease coursing through our bodies. Then and only then can they assess its severity, determine the appropriate treatment, and talk about a prognosis.
Gasping for Information
For Monica, the challenges at diagnosis time were more than just fear of the disease. She literally couldn’t talk. A journalist in her fifties, she was used to asking hard questions, digging for information, and piecing together puzzles. She was also used to working long hours and not having a moment to take care of herself. At the time, she had been so busy with work that she had ignored a variety of nonspecific symptoms for months before finally seeing her doctor and getting a computerized tomography (CT) scan.
When my primary care doctor got the report, all I was told was, “You have a significant mass in your abdomen. Get the first appointment you can with this doctor.” They never used the word “cancer” but handed me the name of an oncologist. As a patient, you are left drawing your own conclusions. I under-stand doctors wanting to be circumspect when all the facts aren’t there, but saying too little produces anxiety too.
Monica’s visit to the oncologist the next day only added to her confusion. The doctor spent a long time telling her all the things it could be but didn’t offer any clarity about what she suspected was going on. “I came away thinking there was a fifty-fifty chance I had cancer, and I didn’t know how to deal with that.” She maintained her relentless pace at the office while scheduling surgery and pre-op testing. That didn’t leave a lot of time to focus on whether she did or didn’t have cancer. But it was there in the back of her mind, adding to her general sense of foreboding.
A week later, I woke up from the operation, still intubated and unable to talk with that tube down my throat. I was so scared. I scribbled a note to my husband, who was sitting beside me, and he told me it was cancer—advanced, aggressive ovarian cancer. Instantly I thought, “Holy cow, I could die.” Hearing that news and having that thought while being intubated was just awful—the panic and not being able to discuss it, and having to process it while dealing with the pain and the incision and the anesthesia, were just too much.
Monica knew all too well that cancer could change one’s expectations of life. A friend had recently passed away from ovarian cancer, leaving behind twins who still needed mothering. But Monica had never imagined that cancer would interrupt her life. There was no family history of cancer; her father had lived to be ninety, and her mother was still going strong at age eighty-eight.
Mom came to visit me at the hospital, and as she was sitting beside my bed, I was thinking, “I always assumed I would live as long as her, that I would have at least another thirty-five years.” But now I had cancer, and all bets were off. I was so afraid I was going to die young.
I kept thinking about all the things I wanted to do right away and regretting that I wasn’t going to have more time with my husband, whom I had married just ten years earlier. He didn’t want to even talk about the possibility that I might die. It’s not that he was unsympathetic, but he was dealing with the same fear, so it was hard to have that conversation.
As pressing as her concern was, Monica discovered that nobody wanted to talk about these fears with her. Mostly people just ignored the question of mortality; she found that hard. There was one chaplain in the hospital who was willing to listen to her and let her cry, but ultimately, she realized “the only person who can confront your mortality is you.”
Using her skills as a reporter, Monica set to work investigating, asking questions, and searching for information that would illuminate her future. She went online, read research studies, and tried to learn as much as she could about her cancer in the hopes that she could better understand the most important question—was she going to die from this? But none of her efforts proved satisfying.
One of the tricky things for me to navigate emotionally was figuring out what numbers applied—what was the likely survival rate for my cancer. My doctor kept telling me not to look at the numbers, to pay no attention to the survival rates. “You are an N of 1,” he said. “No one else has your body, your cancer, or your mindset. The numbers are meaningless.” Maybe he was right, but that didn’t make it any easier to deal with. You want to know what to expect, but all of a sudden, your life is in question.
Being forced to face the possibility of death is the underlying cause of so much angst in the first days or weeks after a cancer diagnosis. Long before all the tests come back and a plan is in place, we must confront the possibility that life may be cut short. Whether the odds are good or bad, or the cancer is caught early or late, it’s impossible to know on which side of the divide you will fall, how you will fare with the treatment, and whether or not you will have the chance to get on with your life.
As much as we may enjoy the thrill of a movie with unexpected plot twists, that’s not what most of us want in our daily lives. Human beings are creatures of habit. We tend to like routine and predictability—to know that our commute is going to take between forty-five and fifty minutes every day, to be able to plan a picnic based on the weather forecast. While a traffic jam or sudden downpour can ruin the day, when we hear news that calls into question our assumptions about the rest of our lives, we are shattered. Sure, the unexpected happens all the time—people do get hit by buses, after all—but it happens to someone else, not us.
Seeing Red
Brian was used to the unpredictable. Having grown up in Northern Ireland during “The Troubles,” he’d seen his father’s shop get bombed, his mother’s office shot up, and people he had known killed. That was normal. That was the life he knew. Because of all that danger as he was growing up, he had been taught how to move quickly when threatened, and how to move on when the crisis had passed. So when cancer attacked him personally, he relied on his childhood training.
Out of the blue one day, I was peeing red. That’s not normal, and I was scared. I dropped everything and went to see my doctor, who got me an appointment with a specialist for the very next day. That doctor told me it was probably nothing—at thirty-nine, I was too young for cancer—but did a test anyway. Results came back two days later but were inconclusive, so he said we should investigate further by looking inside my bladder. He scheduled me for an outpatient procedure the very next day.
When I came out of the anesthesia, he told me, “It’s cancer, and I have removed the tumor.” I just shut down emotionally and quickly switched into coping mode. “Okay, so what do we need to do?” I asked. I got very pragmatic. This was a fast-moving project that needed to be managed, I had experts to help me, and I would just do what they told me to do.
Shortly before his diagnosis, Brian had moved to New York to escape the emotional fallout of a long-term relationship that had just ended badly. He was still insecure in his new job and hadn’t had a chance to build the deep friendships one would typically draw on for support at a time like this. There were people he could call to accompany him to an appointment or bring him home from the hospital, but no soul mates. And his family was an ocean away. He felt tremendously alone.
After growing up in a war zone, I had been shipped off to boarding school at age eleven, a harsh place with a lot of bullying and physical punishment— like something in a Victorian novel. There was no one there to help, so I got used to dealing with traumatic things on my own.
But this was coming at me so fast. First, the news that it was cancer, then they told me it was the most aggressive type and that I would need chemo. I couldn’t process it all. I don’t think I allowed myself to feel the trauma of it. I just stayed in the mode of managing what needed to be done. It was a form of emotional coping. I wasn’t going to be victimized by cancer; I was going to attack it right back.
While our past experiences can affect the way we interpret and respond to stress, our fears about cancer also can be exacerbated or managed by how physicians share the information. Unfortunately, the task of conveying the bad news often is left to physicians we barely know, specialists we see because of a suspicious test result, who may not be able to establish rapport and communicate in a way that works for us. When a doctor says, “I wish I had better news,” you are bound to feel a little more uncomfortable than if you hear, “You’re going to be fine, but there is something we have to deal with.”
Jackie was convinced that she had a sinus infection or tonsillitis when a soreness in the back of her throat persisted. She made multiple visits to her primary care physician and an ear, nose, and throat specialist before being told by her doctor, a man she had known for years, “This is not life-threatening. You will be fine. It will be a big inconvenience for six months, but you will be fine.” She had to ask, “What will I be fine from?” before learning it was lymphoma, not tonsillitis. “I was worried they were going to send me for a tonsillectomy, so learning I had cancer this way just took all the stress away.”
Pramod had thought he was anemic before the doctor broke the news to him. “He shook my hand and said ‘Congratulations, you have one of the good cancers,’” Pramod remembered. “I had never heard of chronic myelogenous leukemia, but he said it was like having diabetes. So long as you take your medication every day, you’ll be fine. That really took the sting out of it.”
Those experiences are in sharp contrast to Michelle’s. She was not yet forty when she felt a lump in her breast. Initially assured it was nothing, she kept pushing her ob-gyn, who reluctantly sent her to get a mammogram and sonogram, and eventually, a biopsy.
I think I knew it was cancer. I think I was trying to convince myself it was nothing for a while. But when I went for the biopsy and the doctor said, “This is not good,” it sort of freaked me out. I had a crazy schedule for work that week, so I just put it out of my head.
I brought my husband with me for the follow-up visit, but the doctor didn’t even show up! The office tracked her down and she called in, nonchalantly saying I had cancer, probably stage 3. “It’s bad,” she said. Even though I knew already, I burst into tears, and then was surrounded by a couple of nurses, who were shocked that I was crying. How could they expect that I wouldn’t show emotion at a time like that?
Twice the Trouble
Because it can be so difficult to predict how people will react to the news, telling loved ones you have cancer adds another layer of stress to the diagnosis. Whom do you tell, and when? How do you break the news? What do you do when they are far away? These decisions are complex and come at a time when many patients feel they have limited ability to handle one more burden. Sharing the news while protecting parents and children from its full emotional impact can be especially hard. Mary R. faced this challenge when she learned that she had Hodgkin’s lymphoma. Twenty-six years old and living far from home, she was making plans to go to graduate school in a few months when she started experiencing random symptoms. First, she developed a persistent cough. It wasn’t bad, but after six months, she decided to see a doctor. He wasn’t alarmed, so she wasn’t either. Then she developed what her dermatologist decided was psoriasis. Nothing unusual. But when she started having back pain if she took even one sip of alcohol, she began to get a little concerned.
About this time, I had decided to quit my job in preparation for some backpacking before starting graduate school. I was working out every day, get- ting in shape for a rigorous trip, but the cough was becoming bothersome. I went to a different doctor who thought I might have acid reflux. He ordered some tests, including one for tuberculosis. When that came back inconclusive, he ordered a chest x-ray.
The technician was very casual when I arrived, but after looking at the first image, he came running out and asked if I was coughing blood. That’s when I knew something was seriously wrong. My doctor ordered a CT scan and a lymph node biopsy for the next day, and said he suspected cancer. That was the scariest night, and I couldn’t help but think about death. But I didn’t feel I could tell my parents yet—what if it wasn’t cancer? Whatever anxiety and fear and concern I was feeling, I knew my mom would feel it twice as much.
Mary R. had always been emotionally close to her family, but her parents and sisters lived on the other side of the country, so she enlisted an aunt to go with her for a CT scan. After the scan and biopsy confirmed that she had lymphoma, they called her parents together, with her aunt doing most of the talking.
My mom was crying so hard she couldn’t speak. I was already thinking about what it meant for me and my body for the next year, not to mention the logistics of getting my job back and finding someplace to live and postponing grad school, but it was such a shock for my parents. I felt I had to hold back some of my emotions to make it easier for them. I worried about how honest I could be, given how emotional they both were, especially my mother. Later, when I woke up in the middle of the night in tears, I knew I couldn’t call my mom; I just had to cry myself back to sleep.
Lulu had a similar experience when she was diagnosed with advanced breast cancer at age thirty-four. Born in Mexico City, she had come to the United States on a scholarship to learn English when she was fifteen and worked her way up from packing boxes on the night shift—so she could go to school during the day—to being named operations manager at a major book distributor.
When the radiologist told me it was cancer and they needed to do a biopsy to understand more about it, I just cried. From the beginning, I refused to think I would die, but those thoughts come to your head as soon as you hear something like that. I sat there praying for the strength to go through this, and for the right words. My mother and four-year-old daughter were sitting in the waiting room, and I had to go tell them. That was going to be even harder.
When I went out, my mom knew something was up—I had been gone such a long time. So I hugged her and told her I needed her to be strong, that I had cancer, but everything was going to be okay. She was devastated and crying so hard that my daughter, who didn’t understand what was going on, started making funny faces and jokes to cheer her up. The worst was telling my husband later. He was overcome with tears, and that just broke my heart.
No Big Deal
Not everyone panics when hearing a cancer diagnosis. For some, it seems more like a rite of passage, or another of life’s challenges that needs to be managed. Joy responded to a breast cancer diagnosis with nonchalance. “It didn’t throw me,” she said. “It was like having an appendectomy. I just did what the doctor told me to do, and it was done.” Robin A. was so busy with her life and caring for others that she never focused on her uterine cancer diagnosis; later she had difficulty remembering that she had had it. “Now, when I am filling out one of those endless health questionnaires, I stop at the cancer line and have to think a moment,” she said. “It isn’t in my head that I had cancer.”
Alan’s coping style has always been denial, so he wasn’t felled by the news. “What, me worry? When the first test results were ambiguous, I just clung to the idea that whatever it was, it was benign. Even when they were doing more and more tests, I told myself they were just being cautious. There was a moment of tears in my kitchen when I realized that
pancreatic cancer was fatal, but even then, my rational mind kept saying ‘Of course you are going to live; you have too much to live for.’”
For Sue, the threat of cancer had been hanging over her head since she was twenty-seven. Her mother had died of breast cancer that year, at the age of sixty. Sue had always been sure she would receive the same diagnosis, if not the same out-come—and felt it even more strongly as she approached the same age.
I was keenly aware of the disease and my own vulnerability. It was like the sword of Damocles, and I kept waiting for it to fall. Every time I went for a checkup, I worried this was going to be the one; this was the time they would find the cancer. And many times, they found something that needed to be explored further. They were always calling me back for more imaging, saying, “We need to watch this,” and taking a biopsy. I’d had five biopsies already.
The extra attention and scans didn’t show any cancer, but there was enough reason for concern, given Sue’s family his- tory and repeated need for biopsies, that she started seeing an oncologist several years before her diagnosis. That doctor prescribed tamoxifen, which helps prevent hormone-dependent breast cancer by regulating the growth of estrogen; as one patient described it, “It eats estrogen for lunch.” The daily pill was easy for Sue, but it didn’t mean she could relax her vigilance. While it reduces the risk of breast cancer, tamoxifen comes with an increased risk of uterine cancer, stroke, and vision problems.
So when a routine gynecologic exam in the spring of 2005 showed a small cyst that was growing on her uterus, her doc- tor strongly recommended a hysterectomy, just to be safe. Sue scheduled the surgery for the end of July, thinking she would take a couple of weeks to recover and then be back at work. Boy, was she wrong.
The surgery went badly, and four days after the operation I was back in the hospital. A round of tests revealed that my ureter had been cut during the laparoscopic hysterectomy, and I had sepsis. Now they needed to open me up for a much more extensive operation. By the end of the summer, I had had my fill of hospitals and languid days of recovery. All I wanted was to get back to normal life. But that wasn’t meant to be.
In early September, I felt a lump in my breast. There it was. I had never really expected I would dodge the bullet, but now? Despite the bad timing, when my oncologist finally said the words, “You have cancer,” I felt a huge relief. I knew this day would come, and now, finally, we could deal with it.
ADVICE FROM THOSE WHO LEARNED IT THE HARD WAY
Shock, stress, tears, anxiety, denial, or even relief—emotions erupt at the time of diagnosis with surprising strength and complexity, reflecting who we are, how threatened we feel, and our diverse ways of coping. Regardless of how we internalize and express the emotion, though, most of us are left with a powerful recollection of the moment we understood we had cancer that suggests we experienced some degree of stress. Fueled by a cascade of hormones released in the moment of crisis, we can easily recall the visceral reaction we had to the news, whether it was fifteen minutes ago or ancient history. For many, the emotions evoked in that moment dissolve and shift as we move into the next phase, but for others, the response to diagnosis sets the course for the rest of the ordeal.
As Carol said, “Each of us has to find our own best way to deal with cancer.” But patients who have been there shared some common thoughts on how to get through those difficult first hours and days: “It really sucks,” said Susie, “but you have to have to get beyond that.” Or, as Deborah put it, “Experience what you are feeling. It is scary. Acknowledge that, and then move on.” Anne agreed. “It’s helpful to remember that most of us live. It isn’t a death sentence, and it’s not a judgment or a punishment. It’s just a disease.”
How do you move beyond the shock? Some take an aggressive stance, as Lulu did.
“Obviously, you are going to cry and be upset and be mad, but at some point, you need to stop, you need to concentrate your mind on getting ready to fight, with victory as your goal,” she said. Others prefer a more measured approach. Mark said, “You can’t swallow the whole thing in one bite. Take baby steps; worry about just one thing at a time.” But no matter what, it seems to help to recognize that there will be good days and bad days ahead. As Fatima said, “It’s going to be a roller coaster ride, but keep your faith up and do what you need to do.” And many patients counsel, as Charlotte did, “You are stronger than you know you are. It’s not easy, but it’s not terrible either.” Still, no one is expecting you to be stoic about it. Nancy H. said, “You don’t have to be a superwoman about it. It’s normal to be scared, so go with what you need, what feels right to you.”
Often, what feels right is relying on others for support. “Don’t be afraid to share it,” said Deborah. “So many people don’t want to talk about it, but when you allow people in to share it with you, it makes it less scary.” Nina agreed: “Surround yourself with supportive people. You don’t need people who aren’t helpful. You need to stay positive and not go to the dark side.”
Or, as Robin A. said, “Find some support, whether it’s fam- ily, close friends, or an online support community of others who have been there. It really helps.”
And with the support of others, seek out the best possible care. “Get the best medical care that you can,” said Diane. “You have to do a little digging, a little homework.”
Jill R. agreed. “Talk to friends and doctors and people who have been there to gather as much information as needed,” she said. “Information is powerful.”
“But don’t scare yourself,” cautioned Loretta. “Every cancer is different.”