Shit. Shoulda taken my Altoids,” Joe would say whenever I asked whether he was still smoking. “Look, I don’t have cancer,” he’d protest, “I’m not in chemotherapy and I’m certainly not sittin’ here talkinna you.” Of course, Joe Sullivan*would have been the first to say he was full of it. “Yeah, I’m in denial. Who wouldn’t be?”
Forty-nine years old when he first came to see me, Joe was still robust and healthy looking, with an air of confidence and dignity that was never to waver. We must have made an odd-looking pair on those occasions when we stood side-by-side in the clinic’s waiting room; at well over six feet, he towered over my almost-five-foot frame, and probably weighed close to three times what I did. Whether standing or sitting, Joe always moved with a perfectly erect spine, and his movements had a controlled gracefulness despite his large frame. A proud man of Irish extraction, he had a pale complexion and a thick head of beautiful black hair, which he always kept perfectly coifed despite its strong curl. I wasn’t surprised when he described himself as being quite vain about it, and I wondered how he would cope with its likely gradual loss over the coming weeks.
There once was a time when Joe’s doctor would have “protected” him from knowing his prognosis, or even his diagnosis. Fortunately, the patronizing deceptions that were once commonplace are no longer tolerated. But the age of informed consent brings with it new problems, as patients sometimes complain bitterly of aloof doctors and the cold-hearted statistics they have to offer. People like Joe depend on their own mental gymnastics for protection instead. Medical teams and families are often caught in a bind, not knowing how to be supportive without being dishonest. More than once in the course of my work, I was reminded of the old Woody Allen joke about the guy who goes to a psychiatrist and tells him, “My brother’s crazy, he thinks he’s a chicken.” The psychiatrist asks why he doesn’t bring him in. He replies, “I would, but I need the eggs.”
I could see early on that Joe was greatly in need of eggs. He had just started his last chance chemotherapy. He knew the odds were low that it would keep him alive very long; at least, he had been informed of it. I wanted to get a sense of Joe’s true level of hopefulness. But it was hard to know what that meant under the circumstances.
“How did you take the news?” I asked.
“I believe Dr. Shapiro’s gonna give me five more years. Maybe even ten. I don’t care what the books say. I really believe it. Hopeful. That’s how I feel.” He glared, letting me know he wouldn’t tolerate even the mention of alternative possibilities.
Where does hope end and denial start? I wondered. More important, did it matter? On the one hand, the term “denial” always seemed to refer to a game people played, allowing themselves to abdicate responsibility for a multitude of sins without having to stop committing them. On the other hand, I had learned to respect what it could accomplish in people who were very sick. “Denial is your best friend,” we were taught early on, as long as it didn’t interfere with medical treatment. Researchers sometimes seemed to describe it as if it were a medical treatment itself, a titration mechanism for meting out reality in manageable doses. Joe was letting me know not to make his dose too large. I thought of an Emily Dickenson poem. “Tell all the truth. But tell it slant.”
I also thought of my first terminally ill patient, a young woman hospitalized with AIDS before protease inhibitors became available. She was twenty-nine, the same age as I at the time, although, unlike me, she was unlikely ever to see her thirtieth birthday. I particularly remembered her voice; it had a very sweet and musical tone, even when she would describe her recurrent nightmare of being buried before she was quite dead. I would notice the way her doctors began standing further away from her bed than they used to, visiting less frequently or staying for shorter periods. She described many family members’ doing the same. I would think about her dreams. “No,” she would cry out from inside her coffin, “I’m not dead yet. Not yet.” It was her denial that had helped her feel alive even as she sensed others already had given her up for dead.
My first meeting with Joe began inauspiciously. His oncologist, Dr. Shapiro, asked me to evaluate him in the hospital soon after he began his final chemotherapy. Joe’s mood and appetite were uncharacteristically low, and he reluctantly agreed to a psychological consultation after his regular checkup. When I walked into the spare white examining room, I found Joe squeezed into a small beige metal chair, eyeing me somewhat warily. Distant but cooperative, he made a point of answering questions, but offered very little otherwise. He dutifully offered up his background, Jersey boy, married high school sweetheart, one daughter. And two beautiful granddaughters, Charlotte, six, and Isabel, four. He smiled as he reached for his wallet to show me their pictures. I smiled back, and thought of my elderly father showing off pictures of my two-year old son. For a moment, I wondered how much longer either grandfather would have with his grandchildren. I asked how it felt to be talking to me.
There was a long pause.
“Nothing personal, but how long have you been doing this?” He crossed his arms across his chest, hiding his hands in his armpits, but leaving his thumbs out pointing up. Joe asked about my credentials, and I explained that I held a doctorate in Clinical Psychology and was a Fellow in the Psychiatry Department. It was a sensible question, though one I was rarely asked.
“You know, you look awfully young…” He seemed to linger on the word “young.” Perhaps it’s because of my size that I have often appeared significantly younger than I am. Though there have been times when I’ve welcomed this illusion, it’s not particularly reassuring to patients who’d prefer to associate their therapists with wisdom and experience. The deeper implication was also clear: what did I know about cancer when I was young and healthy and couldn’t possibly know what his life was like?
“Of course, it’s true that I am younger than you,” I said, “though I’m actually older than I look.” I thought I sounded a bit defensive, and I wisecracked, “On the other hand, it’s not as if you’re going to turn around and find out I really have sixty years worth of experience behind me.” Joe laughed, and uncrossed his arms. I had the sense he was going to give me a try.
“I’ve been sad all my life,” he began. His voice sounded tired as he spoke quietly about the first great trauma of his life, the death of his seven year old sister when he was five. She had contracted rheumatic heart disease, most likely due to a previously undiagnosed streptococcus infection. Joe and his parents were at her bedside when she died, and he would always wonder vaguely if any of them were to blame. The second trauma was his experience years later in the Vietnam War, where he had been involved in a very bloody offensive -- “the time to be there,” he added in a low, gravelly voice while cocking his head and raising an eyebrow. With a subtle smile, he pantomimed riding his jeep down mine-laden roads, dodging bullets, explosions and fires, pretending to look around as if dodging them even now. If it weren’t for the fact that his enthusiasm seemed so tightly controlled, he would have seemed rather like a character out of a John Wayne movie. At times, he had a defiant look in his eyes. “Do you understand now what I’m capable of surviving?” they seemed to say.
After Joe returned from the war, he worked his way up to a middle management position in a large New York City bank, despite having been a college dropout. He was to work at his last position for fifteen years until he learned he had stage II Non-Small Cell Lung Cancer, with some local spread but no distant metastasis. Surgical resection of the tumor meant the loss of parts of his lung, and radiation soon followed. It took less than a year for the cancer to recur and spread, and he quickly progressed to stage IV. As Vivian Bearing says in the play Wit, there is no stage V.
I spoke with the medical team about what to expect from Joe’s current treatment regimen. A number of them mentioned that he had failed his previous chemotherapy protocol, and I wondered if it had ever occurred to anyone that it was actually the protocol that had done the failing. Joe’s current and final treatment was a new platinum-based chemotherapy combination that was his last chance at anything beyond palliative care. In addition, he was taking a strong anti-emetic to control vomiting, and a mild narcotic for his increasing bone pain.
Joe felt generally prepared to do battle, although he was now at a particularly stressful point in his treatment. He was dogged increasingly by insomnia and agitation, and he wasn’t getting along well with his family, especially his daughter Maureen. Though Joe was afraid she might even cut him off from his grandchildren, he gave few details. He implied that they had never gotten along particularly well, especially since her divorce two years earlier. But his relationship with the girls had never been affected before. Joe choked back tears when he mentioned them. It is our families who are our greatest emotional resource in dealing with tragedy. The fear of losing them can be greater even than the fear of dying.
He was not suicidal. At least not yet, Joe told me. His will to live was conditional; he maintained a sense of control by deciding for himself how far he was willing to go. For him, that point was the intense breathlessness known as air hunger that often accompanies late-stage lung cancer. In one study, cancer patients were offered a hypothetical choice – fifteen year survival but with various symptoms versus fewer years but with fewer symptoms. They had to decide how much time they were willing to sacrifice in order to be free of any given symptom. At the very top of the list was air hunger; subjects were willing to give up ten years, a full two thirds of their allotted time, in order to escape it. I wondered how Joe would fare when the situation was no longer hypothetical for him.
We agreed to meet for weekly psychotherapy sessions, and I also referred him for a psychiatric medication evaluation. Soon, Joe added two new drugs to his already prodigious regimen. We left our goal vague – help in coping with his grueling new chemo.
Though I would not say that Joe explicitly lied at our initial meetings, he clearly tended to gloss over uncomfortable issues, particularly when it came to Maureen. He said that they argued often, but gave no details. He strongly implied that she was at fault, and if I asked too many questions, he said simply, “Look. Let’s just say we don’t see eye-to eye.” Whether he was keeping something from me or from himself wasn’t clear. In addition, he seemed tightly coiled, as if he might explode if pushed too far, though I never experienced that, and there would be times when I would push too far. Control was clearly an issue for him; it was he who announced when sessions were over, after openly making a point of checking his watch. “Otherwise, it would feel like you’re kicking me out.”
If I Can’t See the Ghost
From our second session on, I met with Joe in the warmer atmosphere of our out-patient clinic. He was my first appointment of the day, and always arrived early. He would nod at me in the waiting room, and I could have sworn he looked proud to have gotten there first. Even sitting down, he was an imposing presence in the room. With its earth-toned rooms and wood furniture, the clinic was easily my favorite among the many in which I’d worked. Room one hundred ten was a quiet haven in forest green and beige, with the exception of the white-faced clock on the wall behind Joe’s head; it was a constant reminder of time ticking by for him, and I was glad he was facing away from it. We sat across from each other, beside a half-round walnut desk that could serve as an armrest, or, if needed, as a buffer. I watched his beautiful hair gradually disappear, along with his eyebrows, and he began wearing hats that he had carefully picked out in advance. First, he opted for a tan fedora, experimenting with different positions. He considered a Stetson but ultimately decided against it, laughing at his cowboy fantasy. Finally, he decided on two Yankees caps with his granddaughters’ pictures on the back. He alternated between Charlotte and Isabel every week, mentioning his hair only once, to say he preferred wearing the girls on his head instead.
By the time I began seeing Joe, I had become unsatisfied with the way denial had come to be thought of, and sometimes endorsed, for a number of reasons. Sometimes, it seemed as if the idea of respecting denial had more to do with justifying our own need to protect ourselves from our patients’ (or our friends’ or our loved ones’) fears, than with their need for a reality buffer. After all, ultimately, they are our fears too, both for ourselves and the people we love. People who are dealing with severe or terminal illness may learn early on to shield us from what they really think and feel. They know how threatening it would be. And they’re often right.
I knew that from personal experience. It was at the funeral of my close friend that I had decided to go into my field in the first place. Shelly was a Mathematical Logician, smart and resourceful, and I always had assumed naively that she would survive despite her many recurrences. Instead, she died just short of her fortieth birthday. The median survival time for women with her stage of breast cancer had been eighteen months, but she lasted six years. Shelly’s death came as a shock to me; it burst through the denial that came easily to thirty-somethings who thought they were too young to think about such things. It wasn’t until after she died that I chose to study Psycho-oncology. I later realized in retrospect that the shock of seeing people die would have been too much for me before then. Shelly hadn’t been the one who hid from the facts. I had.
Another problem with the concept of denial was what seemed an overly simplistic assumption that it was a kind of steady state, some foreign country one might inhabit, as in, “She’s in a state of denial.” Some theorists consider it a particularly immature stage that ultimately gives way to more advanced forms of coping. In my experience, however, it always has seemed much more complex and dynamic than that, as if we constantly navigated between knowing something we would rather not know, and actively trying to un-know it at the same time.
Research on the adaptive benefits of denial is equivocal. Some research endorses it as a necessary component of a fighting spirit. Being too realistic might get in the way of battle. On the other hand, some research suggests the opposite – that denial is a function of giving up, ultimately leading you to believe you don’t need to fight at all. People who are terminally ill need to stake out the middle ground, to be able to actively confront the reality of their situation, without being fatalistic about it. But research doesn’t necessarily answer the bottom line question: what does it mean exactly to confront your illness without being fatalistic if the objective fact is that you likely have little time left to live? If a woman with late stage kidney cancer spends her days planning a big summer vacation in St. Thomas next year, is she fighting bravely or refusing to confront the reality of her impending death? Further, medical science is constantly evolving and sometimes cancer treatment seems to improve with each passing week. Who am I to judge the realism of my patients’ hopes? Or even to assume the books will still be accurate in six months? Who am I to assume that what holds true for a majority of people will necessarily do the same for this one particular person? For Joe?
On the surface, Joe showed a great deal of the fortitude and fighting spirit described in the research literature. Though he felt he had gotten a very raw deal, he set his sights on five good years. He knew it was statistically unlikely, but felt it was worth trying. He came to every appointment, and organized a sophisticated database of his many medications and treatments. Despite some gradual weight loss, Joe usually came to our outpatient clinic full of pep, with a sketchpad in the crook of his arm in case he passed any scenes worth drawing on the way in. He even added extra time just for that purpose. He liked to draw family portraits as well, and I often found him in the waiting room regaling the secretaries with stories about his granddaughters.
Joe also could be a lot of fun, and his impersonation of his oncologist’s glum, just-the-facts-ma’am interpersonal style made us both laugh, even when the news wasn’t good. Though he continued to be concerned that friction with his daughter would curtail his time with his grandchildren, he didn’t let that get in the way of enjoying their company, or pointing out pretty things in the park, or walking through his neighborhood with them, bellowing silly songs. And he was proud of his wife, “fine-looking woman, fine,” who knew everyone in the neighborhood. Probably the biggest endeavor Joe undertook during our treatment was a big camping trip in the Adirondacks, which included not only Joe and his wife, but Maureen and the girls as well.
There were other times, however, when I wondered if Joe’s denial might hurt him more in the long run. While he refused to discuss anything that might relate to end-of-life issues, his fear of dying often lurked just beneath the surface. For example, he was terrified that something dreadful might befall family members; he couldn’t acknowledge even the possibility that he’d be the one to leave first.
One day, he heard what he thought was never heard at our hospital. The words stuck in his throat as he described it to me. During one inpatient stay for dehydration and fevers, he had overheard the medical team tell the man in the next bed there was nothing left they could do for him. Joe thought he was crying for his poor roommate. He couldn’t accept the possibility that he might also be crying for himself. In fact, he told me with pride, he almost never expressed any fear, even his to family. Except for one instance when he lost control in front of his wife, the only people to see his tears were his oncologist, whom he always saw alone, and I. It was inevitable that he would be more vulnerable in his physician’s office, since it was the point of actual collision between hope and reality. But I thought it an act of strength and courage on Joe’s part to let me bear witness to his suffering.
Then, he brightened up, as he spoke in slow and deliberate tones. “If it’s my turn for that speech one day, someone will lead me to a secret room where there’s this man in a long white coat. He takes a vial out of his doctor’s bag and quietly hands it to me, some secret experimental drug…. I know it sounds silly, but I really believe it.”
Joe laughed, eyed me carefully and suddenly said, as he would many times as if it were a mantra, “Hey, if I can’t see the ghost, then maybe the ghost can’t see me.” I wondered how he would cope when his denial would no longer be able to protect him from the reality that was likely to start slapping him in the face in the days to come.
There were also ways in which Joe disengaged from his medical treatment despite his general enthusiasm for it. He continued to smoke, which he refused to discuss, ostentatiously popping a peppermint Altoid into his mouth instead. And he barely mentioned the mild chest pains that concerned Maureen enough to inform the team about them. Just a little heartburn, he figured, even when they started intensifying. He was annoyed that she had even bothered them.
It turned out that there was something else Joe was hiding. What he had described as a moderate amount of alcohol could be over a dozen mixed drinks at a sitting. In fact, he had a long history of minimizing alcohol abuse. And though he initially denied using other drugs, I would later hear about some marijuana, with an almost Talmudic discussion of why he felt it didn’t constitute actual drug use.
“Have you mentioned the drinks to Dr. Shapiro, in case they affect your treatment?” I asked.
“I knew I shouldn’t have told you. Look,” he scolded me, his voice rising sharply, “I’m dying. And you want to take away MY CANDY?!”
Well, he did have a point. But it also stood in stark contrast to his hope of shooting for five or ten years, particularly when it was smoking and drinking that likely had contributed to his cancer in the first place.
“I’ll mention the drinks to Shapiro, okay?” he said coolly, and he later did. “Hmm,” I decided to push a little. “How does Maureen feel about your drinking?”
Joe paused a moment. “Yeah, it bothers her. But it’s never been a ’problem’ for me,” he said, emphasizing the word “problem” by raising his voice and drawing imaginary quote marks in the air. “If it bothers her, that’s her problem.” He had no more to say about it. Focusing on surviving his cancer may have given Joe hope, but it also made his relationship with his daughter feel less urgent than it really was. I hoped for both their sakes that they would be able to make amends before it was too late. I decided I’d pushed enough, and kept the thought to myself for the moment.
Still, I often was conflicted about how to respond to Joe’s hopeful denial. At times, I even found it a little contagious. When I looked up the five-year survival rates for his level of disease, I found that they were so low, a number wasn’t even given. Below a cancer with a ten per-cent survival rate, I found his. “Five-year survival very rare,” was all it said. But my reflexive reaction was positive. “Well,” I thought, “very rare isn’t the same as zero, is it?”
I knew it wasn’t merely an issue of rooting for Joe. My job is to help people with cancer cope with an existential crisis, whether or not their treatment succeeds. But I can’t help them get what they really want, a cure or, at the very least, more time. When their treatment fails them, sometimes I feel like the consolation prize, a bystander looking on while the medical team is conjuring up whatever magic they can think of for the real fight. If Joe miraculously got his wish, at least I could feel like part of the victory team.
There’s always a danger of over-identifying with patients in Joe’s situation. For one thing, I could hear Shelly’s voice in my head. “Almost six years! Good years!” Then there was also our shared mortality. For all I knew, somewhere there was lurking an oncogene with my name on it. How would I face it? The question would come and go quickly. It was my job to focus on Joe’s coping needs, not my own.
And while his coping style helped him fight, it left him totally unprepared for possible bad news to come: increasing chest pains, a bad CAT scan, shorter and shorter breaths. I thought about Maureen and about his sister; they seemed to be on his mind but he allowed himself no outlet for expressing his feelings about them.
Finding a balance was my constant struggle. Sometimes, I let denial be my best friend. Often, I was either silent or more overtly supportive, and at times, I gently interpreted. Sometimes, though, I queried him further about his thoughts and feelings at difficult moments, until he would tell me in no uncertain terms, “I don’t want to go there.” At times, Joe would remind me of his philosophy regarding the ghost and at other times, he would surprise me.
“So, what if you do get your five good years,” I asked one day. “Or even ten? What would you want to do with them anyway?” Joe raised one nonexistent eyebrow, and took a while before responding.
“Well, I’d like to work with underprivileged kids, maybe Head Start, or I think I’d make a good teacher.” As he rattled off a few more possibilities, I noticed they all revolved around children. He had noticed it too. His voice grew softer. Perhaps, he wondered aloud, he might really be thinking about Maureen. Maybe he hadn’t been such a good parent, especially during her early years when he had been drinking more and might have been a little belligerent. Maybe a little more than a little. It occurred to him that perhaps his increased irritability during his illness reminded her of the bad old days. Maybe, he added, he was also thinking about his sister. Had he been getting too much of their parents’ attention? He was always getting into mischief. Is that why they missed her symptoms? We both agreed that these were issues for us to deal with now. We made it clear that it was in no way a suggestion that he might not live as long as he hoped. And that was the truth.
Joe worked hard during the rest of his therapy, cutting down significantly on his drinking, and becoming more sensitive to his daughter’s concerns. She in return invited him to spend more time with the girls, even to baby-sit when he felt up to it. While away on their camping trip, he surprised her by handing over the reins and leaving the itinerary up to her. He was particularly proud of this accomplishment as it was a far cry from his usual controlling style, and he thought that she truly appreciated it.
“Even if they don’t remember their grandpa, they’ll always remember that trip I gave ‘em.” His voice cracked. “They all will.”
A month later, Joe’s wife threw him a large fiftieth birthday bash, and friends and family came in from all over the country. Joe was ambivalent. Though he certainly enjoyed the attention, he also described it as going to his own wake. Nevertheless, he was proud of rising to the occasion, and even said a few words, making sure to keep them light. He asked his daughter to dance, and they exchanged I-love-yous on the dance floor. He blushed when he described for me how they had kissed in the middle of the floor, with all eyes on them. In general, it seemed that their arguments began decreasing both in frequency and intensity.
Closer to the end of his life, Joe had a dream about reuniting with his sister. He described the small wood house, the ladder leaning against it leading up to the roof, a slow ascent culminating in the recognition that he was dead, and, finally, an embrace with the waiting seven year old girl he had missed so much for so many years. She told him not to be afraid.
“Hey, don’t get me wrong,” he said, wiping an escaping tear from under his right eye. “I still want ten years. But if I don’t get them, well, at least I’ll see her again.” On some occasions, he spontaneously talked about his fears of dying, the things he’d like to do if given the chance, the helpless feeling of living from CAT scan to CAT scan. Other times, he gladly invoked his right not to look the ghost in the face, and I didn’t stand in his way.
As it turned out, Joe and I didn’t have to learn how he would have dealt with a long, slow deterioration. I gradually realized what had happened one morning while waiting for him to arrive for our session. I immediately sensed something was wrong when I didn’t see him in the waiting room. I waited fifteen minutes before checking to see if he might have been admitted to the hospital, even though I knew he would have notified me of that. I found out definitively once I called the charge nurse on the floor to which he would have been admitted. She told me he had come in with high fevers a few days earlier, and had died of sepsis soon after. In an interesting example of denial – this time my own -- I was aware of both knowing and not knowing every step of the way until I was officially informed of his death.
I felt quietly stunned, as I thought about the day ahead, full of sessions with people who were still fighting their disease, and who needed help coping. I looked at the clock. At least I had the twenty remaining minutes of our session before the receptionist would buzz me for my next patient. I remembered my first patient’s death, and how I had wished I could have taken the rest of the day off to indulge my sad meditations. But by now I had gotten used to the routine, and actually preferred continuing to work, to feel like part of the fight again. I thought of Joe’s granddaughters, and wondered what they’d be doing now that I would no longer get to hear about them.
Sometimes, it seems that when people talk about denial, they are referring to a theory that relates courage simply to the ability to stare death in the face. But denial and courage are complicated business, and there are many shades of each. Sometimes, courage takes the form of knowing what you want, or simply of having a sense of humor, or of admitting you’re afraid. And, sometimes, it takes the form of recognizing when you don’t have the strength to see the facts plainly, and need to be distracted. In the end, perhaps the bravest thing we do is simply to go on however we can, staying connected and finding beauty in a world that will casually go on without us.
* Though this is a true story, all identifying information has been changed.