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My Life With Lymphoma: Ideas For Better Living Through Straighter Thinking
By: Brian Stabler, PhD
The year was 1991. I was lying flat on my back in a cavernous room like a mausoleum, where the linear accelerator was located. It was day one of a three-day course of total body irradiation, which would strip away my own bone marrow and, subsequently, my own immune system. This process would prepare me for an autologous bone marrow transplant (ABMT). I lay in this room in the high pitched hum of machines and the antiseptic smell of the hospital and was struck by how much it all seemed like a horror movie.
Looking back at that dark time, I marvel at how I seemed always to be drifting back to memories of my "normal everyday life", to life before lymphoma. I was totally exhausted, wasted by chemotherapy. But even so, I was always thinking, always wondering, always planning what to do next, as if driven by some natural instinct. I credit this active thinking attitude, together with the support of loving family and friends, for the positive things that eventually emerged from this dreadful experience.
This article describes some ideas and techniques that I, as a clinical psychologist, developed during the course of becoming a lymphoma patient-and, ultimately, survivor. They include how to sustain hope and be self-supporting, and how to think straight and be a self-observer. All are skills I still try to practice every day, both as a patient and as a psychologist.
Hope Can Spring Eternal, With a Little Help
When I was first diagnosed with lymphoma, I used to spend a lot of time wondering how long I was going to live. I would sometimes imagine myself becoming so critically ill that I would be in a hospital bed, tethered to catheters and tubes, slowly dying of complications stemming from my disease. I did this so well and so frequently that I would actually begin to feel physically worse whenever these pessimistic thoughts came over me; I was worrying myself sick. Eventually, I came to realize that if I could worry myself sick, then I should also be able to "think" myself well. But how to do this?
After researching the subject of optimism, especially what is now called learned optimism. I realized that, like anything else, optimism and pessimism are habitual behaviors. For people with cancer, it is now abundantly clear that optimism can have important ramifications for living an "optimal life". I decided to make a list of all my pessimistic thoughts and images, and when I noticed myself falling into them, I would stop and perform the following exercise: I closed my eyes, imagined a scene in the future where I was happy, healthy, having fun with my family or friends, and said to myself, "This is the way it will be, if I choose it. The future is mine to build, not a foregone conclusion."
Exercising positive thinking
Soon, I could feel a physical difference in my body when I did this exercise. Gradually, my thinking habits became more optimistic and energetic, full of ideas and plans for what was to come. I noticed, too, that I needed to do the optimism building exercises every day. If you don't perform physical exercise regularly, the body loses shape and tone. The same holds true for the mind and attitude.
The power of music
Music has a similar, uplifting, and positive effect on me. Listening to Pavarotti, Springsteen, Clapton, Fleetwood Mac, Bach, Beethoven-if it is strong, melodic, symphonic or synthesized, music moves and inspires me in a way that nothing else does. This emotional surge is often one of the building blocks of hopefulness. Many patients have told me they feel the same way.
One final thought on hope: at the end of the day, hope is an attitude attached to a feeling, tied to a thought. Make the thought work and the rest becomes easier. Hope is a precious and renewable resource. Nurture it well.
Self-Support Through Social Support
You read a lot these days about the value of social support for cancer patients. This idea tends to suggest that if a person does not have a virtual army of close, loving friends and family, the result will be a dismal prognosis for the patient. In my experience I have found that being closely and warmly connected to only one or two people, friends or family, can be quite enough. There is no "one size fits all" rule here. The point is, it takes an effort on the patient's part to reach out and actively encourage and accept whatever level of intimacy feels right. Having one good pal with whom to share worries and burdens can beat having twenty acquaintances that call only once in a while.
Friendship is a two-way street, if you can accept it, you should also be ready and able to give it. Sometimes, I actually feel much better when I am helping a friend instead of always being the recipient of someone else's care and attention. Practicing being a good friend to others has been the best investment I ever made as a recovering cancer patient-and as a person.
Look Out for the "Moody Blues"
The job of being a lymphoma survivor may be life's hardest work, and can easily lead to fatigue and "blue periods". When you consider what our bodies go through when we undergo chemotherapy, radiation, surgery, novel therapies like interleukins, and now monoclonal antibody therapy, it's no wonder we get down and out, sometimes even clinically depressed. In my case, I've had just about every type of therapy available, including an autologous bone marrow transplant.
Depression Of all the moods that beset lymphoma patients, depression has to be the worst to bear. And for most of us, it is borne in silence. A recent study in England (Lancet 354:October 16,1999) found that depression or a sense of helplessness is linked to a reduced chance for cancer survival.
Therapies abound But there are as many treatments for depression as there are depressed patients. Everyone has different needs. Some people respond to counseling, some respond to group support, others need medications, and still others find their spiritual faith helpful. For cancer patients, any and all options are available, including alternative or complementary practices such as yoga, massage, or healing touch.
Prayer I benefited from a combination of counseling, a short course of antidepressant medication, and practice in guided imagery. At one point, soon after my diagnosis, I spoke with a clergyman about my need for hopefulness. He advised that I pray very specifically for what I hoped, and that I be prepared for hope to appear in unexpected ways and at unanticipated times. Very soon after, I was enrolled in a clinical protocol at Dana Farber Cancer Center, which had not been available earlier. This led to my first active step to recovery, a turning point in my life. I have, needless to say, continued to be impressed by the power of directed prayer-and recent research actually supports the clinical value of prayer.
Think Straight, Feel Better
Most of us walk around carrying all sorts of unconscious beliefs, assumptions and attitudes. Many of these hot thoughts have little or no evidence to support them, or are not based in factual reality. Psychologists call them cognitive distortions because they are forms of "bent" thinking. For instance, when asked, many cancer patients report that they believe cancer is a foreign invader substance, such as a virus. This underlies the common misconception that you can actually "catch" cancer from someone else. Obviously, this distorted belief could work against optimal outcomes, because it encourages the patient to rely on others-as if medicine, and a doctor or nurse is all that is needed to make things better. Not so: the patient is the most important part of the equation, and must learn to deal positively with cancer.
One way to counter these cognitive distortions is to do an exercise called stress inoculation.
Stress inoculation The purpose of this exercise is to confront and eradicate "bent" thinking habits. Keep a journal for a few days and note when you get down in the dumps or blue, then record what was happening, where you were and with whom. Try to spot what you were thinking immediately before you felt down. Do not try to analyze your feelings after the fact, concentrate on the thoughts that preceded the bad feelings. This is where you should focus.
Learning to correct "bent" thoughts requires that you learn to recognize your distorted thoughts at the moment they are occurring-just before you feel the sad or dismal state of the "blues" coming on-and "capture" them. Psychologists and psychiatrists have found that the way you think affects the way you feel emotionally. Thinking negatively effects how you behave as a patient, and, most importantly, directly impacts the body's immune system by suppressing the actions of disease-fighting cells called T cells, helper cells, and natural killer cells.
By "sweeping" your thoughts prior to the emotion, you have the chance to alter distortions and give yourself a healthier connection with your moods.
Take a moment and draw three columns on a plain piece of paper. Write SITUATION at the top of the first, REACTION at the top of the next column, and THOUGHT at the top of the last. Each day, note when an unpleasant or unhappy feeling comes over you and record the situation. Observe yourself and how you responded. Were you anxious, depressed, happy, worried, angry? Having done this, take a moment later in the day to go back over the list and try to figure out what you were thinking just prior to the situation. You might find that you have regularly occurring patterns of thought, many of which do not make good sense when viewed in hindsight. Our thinking styles can be quite predictable and because they are habitual, are never questioned or challenged. Psychologists have come up with a list of possible styles or types of distortions, most of which are very common, and all of which can be remedied. Here are just a few:
1. Black and white thinking-this is the all-or-nothing style where everything is simple and concrete, and there are no shades of grey.
2. Catastrophizing-where an individual interprets even the smallest problem as a potential disaster and reacts accordingly.
3. Fortune telling-the tendency to believe that we know what the future holds, and it generally is not pleasant.
Emotional reasoning-the belief that the feelings you experience represent reality, as in, "I feel bad all the time, so this must mean that things in my life are pretty bad." If just one or two of these thinking styles is present, a cancer patient could have a poorer life quality, increased stress, and perhaps even negative changes in the course of his illness. Research has shown that if patients learn to journal their thoughts, and actively begin to challenge and adjust their "hot thoughts" and distortions, they can anticipate improvements in their quality of life. I've come to firmly believe that keeping psychologically fit is every bit as important as keeping physically fit.
Keeping Track of Yourself
A major problem for many patients is keeping track of what has been going on with their body between visits to the doctor. I developed a simple daily log in which I note any physical symptoms I experience, any emotional or mood changes, as well as the physical exercises and social contacts I have. This does two things. First, it gives me a realistic record of what might be happening with my disease. Second, it represents the positive steps I have taken to improve my life quality and health. Too often all we do when we visit the doctor is talk about our troubles and woes. When we record the positive initiatives we take, it tends to reinforce the idea that we are active in our own care, and offers a source of pride in accomplishment to counter the times when things look a little bleak.
There are many things lymphoma patients can do to keep their outlook bright and improve their quality of life. The central idea, that you feel as you do largely because of the way you think is applicable to every aspect of life. Doing daily thought sweeping and stress inoculation exercises not only holds the promise of improved well-being, but I am personally convinced it also has powerful, direct implications for our cancer-fighting systems. If you want to learn more about this idea, here are a couple of reading suggestions:
Mind Over Mood, by Christine Padesky and Dennis Greenberger. New York; Guilford Press
Kitchen Table Wisdom, by Rachel Naomi Remen. New York: Riverhead Books
Learned Optimism, by Martin E. P. Seligman. New York: Pocket Books
Life on Fire: A Comedy of Terrors, by Evan Handler. New York, Henry Holt & Co.