The pale, for ancient mariners, was a stake in the ground that, when passed, meant you were traveling into uncharted waters. There were no maps available, and the civil laws of your land no longer held power.
This is the perfect metaphor for encountering cancer. In this article, I explore this experience by looking at my own personal encounter with hairy cell leukemia. I believe there is a great potential for learning from such an experience. My hope is that you, the reader, will be able to take away some insights that will help you deal with your own personal illnesses (believe me, they will come) and, more importantly, that will give you some insight into what our patients are going through. Hopefully, by better understanding the emotional, physical, and spiritual journeys of our patients, we will be able to provide compassionate healing that lessens their suffering.
Part I: Diagnosis
In my experience, the only thing worse than taking care of a nurse is taking care of a physician. Why is this so? Physicians are often described as wonderful team players; it’s just that our team sport is golf (the Ryder Cup). We love to function autonomously, and we are usually very successful at our chosen specialty. When successful, autonomous people get sick, there isn’t much of a safety net to fall back into, and being ill just doesn’t fit our personal job description. Doctors aren’t supposed to get sick. Basically, you work until you die, and hopefully you die suddenly, never having to rely on anyone but yourself.
We physicians have a tough time being vulnerable. We are wonderful at giving compassion, but terrible at accepting it. Going from the healer to being healed is one of the great challenges of our lives. Hilary Clinton said it takes a village to raise a child, and I would maintain that it takes a large community to heal a physician.
In May, 2001 three months into my Bush Fellowship and having the time of my life, I came down with pneumonia. No big deal. I awoke in the middle of the night with pleurisy and the fascination of hearing rales from the inside out (they really did bubble). Being the prepared type, I started myself on Biaxin and Cefzil, which I conveniently had at home.
I’d never been sick a day in my life. I imposed myself on one of my best physician friends. She had the gall to request an X-ray and a CBC—like I was some sort of regular patient. Mild anemia and pneumonia—probably mycoplasma—was my diagnosis. She requested a peripheral smear, and I called our pathologist just as he was getting the smear to read. As I was quizzing him about hemolysis, he was seeing hairy cell leukemia and trying to figure out what to say to me. What a terrible position I placed him in.
The lesson: When you’re sick, follow the usual rules and be a patient. If you choose a friend as your doctor, remember the special pressure it puts them under (just like when you take care of your own family members). Your natural instincts fly out the window, and you worry about the wrong things.
Life changes so quickly. In medical school, I had imagined catching every disease I ever learned about—but never leukemia, which was just too painful and nothing to kid about. [My vision was of Ali McGraw dying from leukemia in the movie “Love Story.”] Leukemia meant the worst kind of inevitable death. I had worked at Masonic Cancer Center doing bone marrow biopsies on dozens of leukemia victims, so I knew what I was up against.
It is crucial for physicians to understand the meaning a particular illness has to our patients. Peter Sandman, in his discussions on risk communication, talks about the true risk of an event in terms of the following equation: risk = hazard + outrage, where hazard equals the scientific risk assessment and outrage equals the “emotional impact” of the event. Hairy cell leukemia has a great prognosis, but leukemia has a huge outrage factor in our culture. My hematologist was delighted I had hairy cell leukemia because it now has such a great prognosis, but on many levels I just couldn’t believe him.
An example of assessing outrage in an individual patient comes from a patient I met for the first time with a new diagnosis of emphysema. His case was mild, but he was a smoker, so I came down pretty hard on him, urging him to quit smoking. One month later, I read his obituary in the paper, and in talking to his family discovered he had committed suicide. Unbeknownst to me, his father had died slowly and painfully from emphysema and lung cancer. The outrage factor of emphysema had led him to suicide.
Another lesson: To truly assess the risk of our patients’ illnesses, we have to know the meaning of those illnesses to them. Each person has his or her own outrage factor, which will determine in large part how that person reacts to the illness. This will have a powerful impact on the prognosis. As Peter Sandman has said; if your patient is reacting strangely, “It’s the outrage, dummy!”
Who do you tell, and how?
My wife knew about my diagnosis, and several of my partners knew, since I had inadvertently involved them, but I really didn’t want anyone else to know (including myself). How could I tell my daughters? When I did tell them, they were so gracious. They had the audacity to believe me when I told them I was going to be fine. Leukemia didn’t have the same meaning for them, and then, when they heard that I was going to be okay, they gave me the gift of believing me and telling me about their day, just as if nothing special had happened. They were really the only ones who believed leukemia was curable.
One of the strange and wonderful effects of the cancer was that the more people I told about my illness, the better I became. Other people became exquisitely sensitive. Conversations were amazing, and all the rules of normal civil behavior went out the door—people stood closer, touched more, revealed intimate information about themselves. I became expert at reading faces. I could tell people’s cancer history in an instant. If their mother or brother or aunt had died from cancer, it was in their face. If there was great suffering, it was there, palpable between us. The cancer diagnosis makes you a sudden tragic hero. Family, patients, colleagues, yourself, all immediately attach the tragic hero archetype of Jungian psychology upon your behavior. Suddenly, walking down the street becomes an historic, noble act. This can be quite confusing!
I had always wondered if people feel different when they have cancer. Could you feel the invading hoards of cancer calls? Could you feel the battle between good and evil, experience “the shadow”? The answer, for me, was no. Even though 60 percent of my bone marrow was involved with leukemia cells, I didn’t feel different. Except for this: physician patients, just like all patients, enter the strange world of kyros (God’s time), where all the rules of civility change. However, we look exactly the same— in perfect control. We go “beyond the pale” into uncharted waters. Our self-perception changes. People look at us differently and ask strangely wonderful, embarrassing questions. They tell us things they never would have before and expect us to be honest in return. Hypocrisy is not accepted.
Part II: Treatment
Waiting for treatment to begin is like being on death row and should be avoided at all costs. My oncologist got me started on treatment right away. He actually guaranteed me, 100 percent, that I would get a good response to therapy. The Mayo Clinic Hairy Cell Leukemia expert gave me expert, professional advice over the phone served with a dash of compassion.
Of course, I researched the Internet to find every piece of information I could about hairy cell leukemia and 2-CDA treatment. The hairy cell leukemia society had lots of excellent information. However, almost every “illness society” you find on the Internet will also have a personal testimonial section. You don’t really realize, as you surf along, that you’ve crossed from scientific literature into the land of personal testimonial, but all of a sudden the stories become frightening. People die from medication errors, broken IV lines, allergic reactions, and you find yourself terrorized all over again. Patients need to be guided away from these personal testimonial sections as much as possible.
When I met my oncologist, I really wanted him to like me. I thought if I was really nice, maybe he’d declare that the whole thing was a mistake, or at least reduce my dose. But I really, really wanted my chemotherapy nurse to like me, for obvious reasons. There’s just no more vulnerable a moment in life than when your chemo nurse starts the infusion and tries to warn you, gently but firmly, about side effects.
The chemo nurse talked about what a good prognosis I had and how well tolerated treatment usually is. Then came the litany of potential complications—watch for fever, rash, headache, diarrhea, abdominal pain, confusion, bleeding, seizures, etc. The black box warnings in the PDR go on forever. When I left for home, I carried a biohazard bag full of instructions and equipment to deal with a potential spill of my medication. I felt like there was more equipment provided than they had for the entire spill at Chernobyl. A few of the warnings really got to me: “Please flush twice when using the bathroom to protect our environment.” (What about my personal environment). “Please avoid sex as we are not sure about the chemical reaction.” (If I eat hot peppers will I explode).
Reading about how 2-CDA works was fascinating and restored my confidence. The drug is only taken up by white blood cells. It doesn’t kill the cancer cells, but simply makes them unable to divide. Hopefully, the cells die off slowly by the natural process of apoptosis (gradual cell death through aging that normally occurs all the time). The lymphocytes die off gradually, so side effects are reduced immensely because there is no massive cell death overwhelming the immune system. It also means that treatment will be quite slow, so I knew I could expect to be neutropenic for at least six weeks.
Chemotherapy takes one hell of a leap of faith. My treatment represented one of the great advances in cancer therapy and probably one of the safest treatments, yet the process was terrifying. The little infusion pump I wore looked and sounded just like a Gameboy. It delivered 100 cc of fluid in tiny boluses over a seven-day span. It gave off a soft swooshing sound every few seconds—and believe me, I heard every “swoosh” the first night and didn’t move a muscle. By the seventh night, I was sleeping soundly and woke up tightly wrapped in my IV line. I felt like the backlash of my spinning reel after a particularly poor cast.
Post-chemo
Physically, I began to lose weight, and I experienced this perfectly symmetrical loss of muscle mass from every part of my body. Nothing was spared. Any mole, wart, or keratosis started to grow, and mild athlete’s foot quickly became more then mild. The muscles of my cheeks shrank and the suture lines of my skull became prominent. I realized I was taking on the unmistakable appearance of a person with cancer; but none of this was really bad, only a nuisance.
On the second day post-chemo, I had this incredible moment when suddenly my energy level returned to normal. It was like turning the rheostat on a light fixture from dim to brightest in seconds, or like the Claritin commercial when the world goes from black and white to full color. This burst of energy lasted about one hour and then went away as quickly as it had appeared. Amazingly, at that moment I knew I would be okay and that this energy would return permanently in the near future. The following day, it did. To this day, two years later, I still don’t know when my illness began---possibly years before my diagnosis.
I was given the “gift” of six weeks of neutropenia—the waiting game. On the second day, I decided to go the Barnes and Noble. The only absolute warning I had gotten from my chemo nurse was to avoid young children in large numbers. B&N on a Tuesday morning should be safe, I figured; but right around the stacks was a group of preschoolers having reading time. Suddenly, I could hear them all coughing and sneezing—and when I looked around the corner, a child was actually blowing his nose. I ran for it. Every doorknob had germs lurking on it waiting to pounce, and elevators are horrible for a person with an active imagination. The only thing worse than being out and about was being home alone with my thoughts. As Pogo said: “We has met the enemy, and they is us!”
III. Healing
Physically, I needed some way to get my strength back and to keep it. I have loved to play racquetball since my college days. It is part of my winter survival kit, along with cross-country skiing. If I could play racquetball again, I would be convinced I was healthy. I developed an exercise program of weights, swimming, treadmill etc.—all with the goal of playing racquets.
One of the great moments of my recovery was playing my first game against my long-term opponent, who is one of my best friends. Our record stands at 5,438 wins-5,438 losses and 1 tie (resulting from a need for stitches when I ran head-on into his racquet). Wayne said it was a very difficult game for him. If he let me win, he knew I would know it; plus, he would be defeating a poor guy with leukemia. But if he lost, he’d have to accept the ignominy of having lost to a guy with leukemia. I jumped off to an early lead, but lost in the end. It was the best loss of my career. Playing helped me realize how much my hand-eye coordination had been affected, and it was a wonderful way to both document and speed my recovery.
Exercise is a crucial component to the recovery of every person with any chronic illness at every stage of the process (even dying patients appreciate gentle range of motion, massage or a gentle touch). For exercise to be truly effective, you must help your patient find exercise that is innately fun.
When I first started back at work, I felt like I was in a fishbowl, with everyone assessing my health. My partners, patients and colleagues treated me with such kindness and compassion. Most of my patients knew about my leukemia and genuinely wanted to know if I was okay. I needed to let my patients know a little bit about how I was doing, without monopolizing their appointment. Usually, it was a good segue into discussing their particular problems. Many long time patients did not return to my care. It is very difficult for patients to imagine their physician as vulnerable, but I also acquired new patients, particularly those with cancer diagnosis
I felt both blessed and frightened to be back at work. There were many occasions during my illness and sabbatical when being back at work was supremely painful simply because I could feel the stress of my partners—I could have cut it with a knife. Our jobs are very difficult, and I am not willing to accept the same level of stress I lived with prior to my illness. I’ve been back to work for two years now, and happily. I haven’t felt the same stress level; but, truly, I’m not sure why. Maybe it’s because I don’t have to answer all the “why’s” anymore, for myself or my patients.
Aids in healing
Emotionally, I have found a great affinity for tragedy in both literature and the theatre. Hamlet and King Lear have a new appeal to me.
Music, in general, is a great emotional release for cancer patients. I have a collection of famous arias from the Metropolitan Opera, and whenever I need an emotional release I sing along with them. They are perfect for me—I have no idea what the plot might be and the words are all in different languages, so my intellect can’t get in the way. The songs express pure emotion, which is a wonderful experience for any physician who has spent the majority of his or her life attempting to control emotions instead of feeling them. Early in their careers, physicians spend their time and energy attempting to master the skills of their profession; but after they’ve done this, the need for intimacy becomes paramount to happiness in their personal lives. Unfortunately, many of us forget how to do this, and many of the people we could or should be close to have found other avenues to satisfy their intimacy needs. Personal illness magnifies the need for intimacy, and one of the great perils for physicians is this personal isolation.
In Sept 2001, soon after 9/11, I was blessed with the unique experience of being a part of the first cohort of “healers” who signed on for the “Inner Life of Healers” retreat series. This five-part weekend series is the brainchild of the Center for Spirituality and Healing at the University of Minnesota. Ostensibly, the retreat was developed for healers who wanted to expand their spiritual lives and better understand what it meant to be a healer, as well as to improve their healing skills. However, I think it was secretly designed to help struggling physicians like myself heal themselves and each other.
I really didn’t go thinking that I was in crisis in any way. I had put my disease behind me and was back at work. I believe the major work of this retreat was the building of community. I am basically a shy person (even massage is threatening to me), and yet I found myself reciting poetry to perfect strangers.
One great healing step for me was going through healing touch. To accept healing touch is to accept your need for healing beyond the known. I expect healing touch is unique to each individual and healer; it was profound for me because it represented my first true acceptance of the vulnerability my illness had given me.
If you attend an “Inner Life” retreat series, you might write, draw, listen to music, meditate, get a massage or experience healing touch, experience the art of deep listening, tell stories around a camp fire, experience wild dreams inspired by the ghosts of the Osceola Retreat Center, sing and maybe even dance. What you won’t do is memorize the Krebs cycle again, take multiple choice tests, or fall asleep during another perfect PowerPoint presentation. (You do get CME credit, and it’s worth it.)
Meditation has been a great healer for me. The guided meditations at the inner life series are life sustaining. I have found the Buddhist conception of suffering extremely helpful. This is how I understand the four noble truths: there is suffering; there is a reason for suffering; there is escape from suffering; and there are discernable paths to follow to find that escape.
Life changes
Having been “beyond the pale” for two years now, I wonder at how I have been changed. I feel closer to my patients and colleagues. I take more chances and am truly curious about what is important to my patients. What truly gives them joy in life? To me, the key to the whole process of healing is the development of genuine community. When I spoke last summer at Stillwater’s “Relay for Life” illumination ceremony, I felt gathered and held by everyone around me. Each luminary represented a living universal soul for me. The business of healthcare has pitted physician against physician. We must work to develop a healing work environment for physicians that fosters community.
I feel led to work with patients who are facing that difficult time of transition from active treatment to active living until death comes. When I die, I don’t want to go out fighting courageously, or with dignity. I want to die surrounded by close friends and family, at peace, a little bit awake but not in great pain, with a laugh in my heart. This is the art of medicine.
Charles W. Bransford, M.D., is a physician at Lakeview Hospitals in Stillwater and medical director of St. Croix Valley MetroEast Program for Health.