It's Not Always a Death Sentence

Author: John Monczunski

Ever since I was a kid my plan has been to live forever, and—as the saying goes—so far my plan is working. Maybe that’s your plan, too. The problem is we both know there’s a flaw. Lately, with way too much regularity, I have begun to see dear friends, relatives and acquaintances my age and younger facing serious, life-threatening health problems.

Cancer is among the worst of these. In the United States a person has a one in three chance of being diagnosed with cancer at some point in their life and a one in five chance of dying from the disease. About 1.4 million people are diagnosed with cancer each year. There is, however, a shred of good news mixed in with the grim statistics. Since 1971, the survival rate has tripled, and today some 10 million people count themselves as cancer survivors.

Coping with bad medical news is no easy thing. A serious disease like cancer is an assault on the psyche as much as the body. Since it strikes without warning, patients are shocked and often angry. Typically, they are swept away in a cascade of emotions that tumble through fear of dying, of leaving loved ones, of the treatment ahead to uncertainty, a sense of helplessness, depression and isolation. Many patients blame themselves for the disease.

Those who have the hardest time coping include people who lack an adequate support network of family and friends, folks who have had a lot of recent stressful events in their lives, have a history of not coping well or who are pessimistic by nature. Nearly half of all cancer patients report difficulty in adjusting to the implications of their diagnosis, and 10 to 15 percent are highly distressed.

At the moment, however, all of this seems a bit unreal to me, perhaps because I have not had to face it myself. My health, as far as I know, seems reasonably okay. But I also know that one day I might receive Bad News. How will I handle it, I wonder. Some people do a better job of coping than others. How do they do it?

A double whammy


All of these thoughts are swirling through my mind as I walk into a South Bend restaurant to have dinner with a longtime friend and former colleague, Carl Magel ’67, ’68M.A. If anyone can talk with authority on the topic, Magel’s the man. In 1988 he was diagnosed with bladder cancer. Five years later, incredibly, a virus effectively destroyed his heart, and he had to have a heart transplant. Throughout both ordeals he has persevered and even prospered.

“The cancer just came out of nowhere,” he recalls. “One day I saw blood in my urine and went to a urologist. I recall him saying it was cancer, and a shiver went straight through my body. But really quickly, even before I left the office I remember thinking, ‘Okay, I’ve got cancer. So what do we do about it?’”

For several months the doctors tried chemotherapy, but it quickly became clear the drugs weren’t working. Magel’s bladder was riddled with cancer, so surgeons removed the organ. Fortunately the disease had not spread. For the past 18 years a catheter inserted in a permanent port in his side has drained into an external synthetic bladder, and he has since been cancer-free.

Cruelly, five years after his cancer scare, the “bolt out of the blue” zapped Magel again. “I remember it was my 25th ND class reunion, and I had a lot of trouble walking up the steps in the Joyce Center,” he recalls. “I had a hard time catching my breath that whole weekend. The next week I went to the doctor, and he diagnosed it as asthma, and he gave me something for it. But, of course, it didn’t work. Eventually I went to a cardiologist who did a series of tests and told me a virus had attacked my heart.”

When the heart problem surfaced, Magel says he didn’t feel bitter or angry. “Actually, I found it kind of humorous. About that time I had been praying to be able to feel things—and what I felt was fear. I’m convinced things just happen sometimes,” he says. “I know I wasn’t being singled out by God for bad behavior or anything. I don’t think it works that way. Sometimes things just happen.”

For the next three years Magel took a variety of medicines that kept his heart functioning well enough, but eventually the drugs stopped working. “I wound up in the hospital on three occasions because the medicines had to be adjusted. The last time I checked in I had two near-death experiences; I actually turned blue.”

When he was initially diagnosed, the doctors had suggested a heart transplant, but Magel was not then keen on the idea. Three years later, hooked up to four machines in a hospital with nowhere to go, a transplant seemed the logical choice if he ever was to have anything approaching a normal life again.

His condition was so precarious that upon admission to the Indianapolis hospital he was immediately placed at the top of the transplant recipient list. “My thought at this point was that this will be easy for me because I’ll come out of the operation with a new heart and I’ll be fine. Or I won’t come out, and I’ll be fine. My family would be the ones with the problem and the heartache.”

Within three weeks a donor heart became available, and Magel had the operation. A month later he was home in South Bend. Four months later he was back at work. All of that was 12 years ago, and looking across the table I can attest he looks great today.

Magel’s wife, Vickie, says her husband’s basic optimism is what got him through all his challenges. He concedes he is an optimist by nature but insists “denial” initially was what helped him through the transplant experience. “When I was in the hospital hooked up to all those machines, I thought, ‘Hey, this is cool. I can do this.’ But of course I couldn’t stay there hooked up to those machines forever.” On one level he knew the seriousness of his situation, but denial allowed him to blot it out and get through it.

“From all of this I’ve developed a theory that it takes as much energy to spin something positively as it does to spin it negatively. So now I choose to use whatever energy I have to spin things positively,” he says.

As scary as his life-threatening experiences have been, Magel insists they’ve improved his life and strengthened his faith. “I’ve discovered that there isn’t much that is important—except the things that are really important: my relationships with other people, my relationship with whomever God puts in front of me from moment to moment. I look at it like this: He’s the Great Servant. He takes care of me so I don’t have any worries, so I can be of service to you.

“Today all my prayers are prayers of gratitude. I value every moment. I think I’m much more aware than I once was. There’s nothing I worry about today. The main thing I’ve learned is that I can’t control what happens to me, but I can control my reaction to it. When people ask, I tell them ‘Don’t be ruled by fear.’”

Time to hope

A cancer diagnosis has a profound effect beyond the patient, touching everyone close to the afflicted person. “If you’ve lost someone at an inopportune time, when it’s not expected, you don’t recover with the same characteristics you started out with,” says Tom Merluzzi, a Notre Dame associate professor of psychology who has studied the psychological implications of cancer ever since his first wife died at the age of 38 from breast cancer more than 20 years ago. “You’re marked by it, and it can be in a good way. Many men become more vulnerable, empathetic. They’re not so tough and uncaring. And that can be good for a guy.”

Another profound effect the disease can have is to bog people down in the “what ifs” of the past and the future. The ND psychologist says it’s always good advice to live in the present, but especially when a person is confronted with difficult life challenges. “People who are either too far in the future or too much in the past are probably not living optimally,” he observes. “It’s good to have goals and essential to learn from the past, but when the focus is exclusively on the future or past, it’s not helpful.”

However, hope in the future is important. As chilling a diagnosis as cancer may be, there is always the chance that something good might happen. Sometimes it does. Dr. Rudy Navari ’66, an assistant dean and director of the Indiana University School of Medicine-South Bend and a leading oncologist, points out he has had patients who have beaten all the odds. “We transplanted bone marrow in a woman over 18 years ago, and I remember two or three weeks after the operation she was on a respirator in intensive care, and I didn’t think she was going to live. But she did. And that was 18 years ago, and she’s doing fine.”

Navari says cases like this allow him to honestly talk hopefully to a patient confronted with seemingly bleak news. Because maybe it’s not. The patients who have beaten the odds were all “big-time fighters,” he says. “People say if you’re optimistic and a fighter you will do well. Part of why they do well is they get more treatment, and if it’s effective they will do well. I was really reluctant to give more treatment to two or three of these people, but they really wanted it, and so we did it. They were really pretty sick, but it worked and they are doing well today.”

Compassionate communication

As difficult as it can be to receive bad news, it may be even harder to deliver. Patients need good information about their disease, treatment plan and prognosis, the medical school dean says. The doctor’s dilemma is always how much to tell and how to tell it. “I think it’s important to be honest and give a patient as much information as they want,” Navari says. “Some people don’t want to know how long they may have. And that’s fine. But if they ask, as a physician, it’s my duty to tell them and to assure them that I will take care of them and make sure they don’t suffer physically or mentally.” The former assistant dean of Notre Dame’s College of Science says he tries always to walk the fine line between absolutely telling the truth to the best of his ability and not destroying hope.

Unfortunately, some doctors fail miserably at the task of compassionate communication. Once such failure led Joseph Hillebrand ’43 to present to Notre Dame a gift from his sister Ruth’s estate to establish the Ruth M. Hillebrand Center for Compassionate Care. His sister’s experience was a nightmare of insensitivity. She learned she had a rare form of lung cancer by way of a perfunctory late night phone call from an oncologist whom she had met only once. The doctor told her that she had a terminal illness and wasn’t likely to do well, then merely said goodbye. That was it. Her devastating encounter made her determined that others should never endure a similar experience, and before her death she established a trust fund to train health care professionals in compassionate communication techniques.

Navari, who became director of Notre Dame’s Hillebrand Center when he was on the Notre Dame faculty and continues to administer it, was appalled by the story. “You just can’t tell someone they have a bad prognosis and then leave it there. You need to present a plan with options so the patient can reflect on that and decide which way they will go.” He adds that he always tries to talk to patients in the company of someone important in their lives, because very often the patient will be overwhelmed and won’t hear much beyond the initial diagnosis. For the same reason, he schedules many short consultations over a short period of time because he says people can absorb only so much in one sitting.

In his own practice, at the initial consultation, Navari gives patients a prompt sheet, a list of basic questions they should ask. The prompt sheet resulted from a study the oncologist conducted a few years ago which found that informed patients fared better than those left to their own devices. “It’s very basic and includes questions like: What is my prognosis? Can my cancer be treated? What are my treatment options? Will my insurance cover the treatment? All practical stuff that people need to know but sometimes forget to ask.”

Navari is convinced information is the key to helping patients through bad news. The more solid information a patient has, the more she understands what’s going on, the better she can predict what must be dealt with, and the better she can cope. “It’s scary enough to begin with, but even scarier if you’re uncertain or entertaining myths,” he says.

Natural reactions
There’s nothing like Bad News from a doctor to focus a person’s attention. People quite naturally begin to think about how they should spend the time they have left, which is an exercise all of us should engage in all of the time anyway. How can we live life in the most meaningful way?

The question has no wrong answers, Tom Merluzzi says. He believes the criticism directed at presidential candidate John Edwards and his wife, Elizabeth, for not abandoning the campaign or for presidential Press Secretary Tony Snow resuming his work are misguided.

“One response certainly may have been to abandon the campaign or work, go home, lead as stress-free a life as possible, the Norman Cousins approach,” Merluzzi says. “No one would criticize anyone for doing that, but it’s not for everyone. What’s important is that they do what they want to do to give their lives meaning and purpose. It’s not our place to decide how someone else does that.”

How people react to a cancer diagnosis depends to a certain extent on what stage in their life they receive the diagnosis, Merluzzi notes. “It’s a lot different for a 35-year-old woman than for an 80-year-old. If cancer comes early, there is anger because a person feels as if she hasn’t had the chance to do what she wants to or needs to in her life. That is when the ‘why me?’ question is likely to surface.

“It’s particularly poignant with adolescents,” says the psychologist, who developed the Cancer Behavior Inventory, a widely used survey designed to measure coping ability. “These kids look at their life and wonder about marriage, school, career. They start foreclosing on things, thinking ‘I’ll never get married; maybe I won’t go to college.’”

Depression and negative emotions are a natural reaction to life-threatening news. If that response is severe or protracted, some type of intervention, either counseling or antidepressant drugs may be called for. But there are people who naturally bounce back from the initial shock. People who cope well, such as Carl Magel, possess resilience. Merluzzi says there are two types of resilient people, those who remain unshaken in the face of serious trauma and those who are initially devastated but then quickly recover.

Resilient people tend to have an optimistic personality. They naturally view things in a positive light. They believe there will be a better day, Merluzzi says. Pessimists, by contrast, invariably interpret a setback as the beginning of the end.

Another dimension of a resilient person, he says, is a trait psychologists call “self-efficacy,” a belief that, no matter what, you have the ability to turn things around. Somehow or other you know you can deal with the problem and get through it.

“People who are more efficacious tend to persist longer in trying to turn things around,” the ND psychologist says. “If they are confronted with adversity, they remain undeterred and tend to double their efforts to push through. Usually efficacious people have had some ‘mastery experience’ in the past, a tough experience that they toughed out and mastered. In the case of John and Elizabeth Edwards, for example, they lost a son in a 1996 car accident. They weathered that storm, which gives them the confidence that they can get through Elizabeth’s recurrence of breast cancer.”

A third dimension of resilience is what psychologists call “hardiness,” which Merluzzi says operates like optimism. “Hardiness buffers people from stress, reducing its impact on them. Someone who has a hardy personality will not be deterred by bumps in the road, no matter what.”

Some of the traits a person who copes well naturally possesses can be learned. In the final analysis, Navari says, “I think the idea is you deal with what you can, change what you can and accept what you can’t.”

John Monczunski is an associate editor of this magazine.