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Shelter From the Storm

Learn how to use a journal to weather a life-threatening illness.

When I was 37, I went for my routine annual physical. The doctor noticed a suspicious lump on my throat, and though he said it was "probably nothing," he sent me for further tests. Soon I had to make some urgent decisions, and recording my ordeal in a journal actually helped me to become a victor rather than a victim.

I didn't start out with the idea that my journal would be an empowerment tool, but that's what it became. Before I got sick, I had generally trusted the medical establishment. I figured they knew more than I did about diagnosis and treatment. Then, between two endocrinologists, a GP, a radiologist and a surgeon, I realized that not only were there many conflicting opinions, but I was being treated as a passive participant on whose behalf all decisions would be made.

The surgeon performed a biopsy, but advised surgery regardless of the results.

"Why?" I asked.

"Because that's what I do," he said. "I cut."

The endocrinologist, Dr. M., delivered the biopsy results: benign.

"However," she went on, "this lab is often wrong. I recommend surgery, just in case." Was I really hearing this? I made a biopsy appointment with a different endocrinologist, Dr. E., and he stated, "There's only a five percent chance that you have cancer, so I won't bother."

"Excuse me," I said, "but five percent means five real people out of every 100. I could be one of them." Begrudgingly, he did the procedure and said that he'd tell me the results the following week.

Using a Journal for Research
I wrote about these disturbing encounters in my journal. Seeing them in print, I realized how easily I might have just accepted an authoritative opinion — to "cut," to do surgery "just in case," or to take comfort in the illusion of statistics. I decided to do my own research. When I mentioned this to Dr. M., she said, "We don't encourage that." I ignored her and went to my local library. (This was pre-Internet.) I was nervous and anticipated finding only complex medical books, but to my surprise there was some very accessible material. As I read, I began to understand better what I was up against, and in the event I had surgery, I found clear instructions for follow-up care.

Yet I also grew alarmed. I discovered that there were four kinds of thyroid cancer: The most common, papillary, grew slowly, while the most rare, anaplastic, could kill within months of diagnosis. Medullary and follicular fell somewhere in between. No one had mentioned any of this, so I scribbled these notes in my journal for reference.

Then the results of the second biopsy came in. "I'm really surprised," said Dr. E., "but you have cancer." The news struck me hard, but not as hard as if I had remained in total ignorance. The knowledge I now had about what I faced helped to cushion the blow sufficiently so that I could form a plan. I consulted my notes, which clarified a course of action. I made an appointment for surgery.

When I asked the surgeon if the biopsy revealed which type of cancer I had, he said, "No, we'll have to go in and see."

Since papillary was the most common, everyone assumed that I had it, but I was cautious. The first physician had been wrong and the first biopsy a false negative. Feeling anxious, I wrote about what I faced: "I have cancer. I don't know what kind or what it could do, except that it could spread to my lungs or bones. My own body is trying to kill me."

Coping with Fear
Writing down my predicament confronted me with a stark reality: some part of me had transformed into a devouring monster, and the rest of me was sliding into its open jaws. Now my journal began to serve a new function: dealing with anxiety. I searched for wisdom from others and recorded what I found.

One quote I wrote down came from a letter written by a male patient of Swiss psychoanalyst Carl Jung. At one time the patient believed that surrender to reality meant being overwhelmed, but he had learned that only by facing the truth could he adopt a liberating attitude toward it. "By keeping quiet," he wrote, "repressing nothing, remaining attentive, and by accepting reality—taking things as they are and not how I want them to be—by doing all this unusual knowledge has come to me and unusual powers as well." I wanted to achieve that kind of inner peace, too, so I relied on the quote as a touchstone.

It turns out that I needed it. Often Dr. M. would hint at things to come, which shaped my imagination into ominous images that made me rigid with fear. To dissolve it, I'd recite the quote. Even more helpful was finding a friend who had gone through the same thing. I used my journal to keep track of my questions as they came up and to record her answers.

After surgery I learned that once again, the doctors had been mistaken. I had both medullary and follicular cancer. More treatments would follow. I was still reeling from the fact that if I had trusted Dr. E., I could have made a fatal decision.

A Source of Grounding
I wasn't prepared for another round of discussions, yet when I sought emotional support, I discovered that many of my relationships had changed. My husband couldn't cope, and some of my friends found ways to isolate me. For the most part, I was on my own.

I returned to my journal to see how I had endured everything thus far. Then I listed my strengths, and I wrote about how each was important to my healing. When things got bad and I felt alone, I used this list to remind myself of my personal capabilities.

During my preparation for radiation treatment, a nurse intimated that not everyone chose to go this route, and I began to suspect I had more options. Time to do more research. I located several cancer information centers that provided a better sense of my situation than any of my doctors had, and realized that not all medical experts accepted the necessity of this follow-up procedure. Yet one of my physicians had told me I had no choice: I had to endure it every year for the rest of my life.

I wanted desperately to make a wise decision. As the treatment date loomed, I used my journal to list the advantages and disadvantages of my alternatives. I even tried stream-of-consciousness writing for potential illumination, but got nowhere. I put the journal aside and went to bed. That night I had a dream: I left the hospital without resistance and returned home. When I walked into my house, I encountered a crowd of patients walking around who all had the same incision across their throats that I had. One man in a wheelchair drew close, smirked at me, and said, "Why do you think they let you go so easily?" I turned to leave and saw that my yard was now a ghostly hospital corridor filled with the hurried movement of transparent nurses. Behind me, the crippled man whispered, "Once you start, you're trapped forever."

I woke up terrified. Much as I wanted to just forget the dream, I knew I had to work on it, so I grabbed my journal to try something new. I had read about Jung's method of "active imagination," in which one can manipulate images during meditation to milk them for more meaning. You turn them every which way and write down all associations until you see patterns or receive insight. I focused on the crippled man, and after describing him from various angles, I realized that he was me. Writing, pondering and rewriting before I slept had induced my subconscious to deliver a potent image of my fear. Now I had to do something about it.

Reviewing for a Complete Picture
I went through my journal to see how I had managed my illness thus far, listing those things that made me feel helpless and those that made me feel powerful.

Essentially, I felt powerless whenever I allowed the doctors to make decisions that I could make. In those circumstances, I felt pressured to believe that I had to follow their directions or die. I already learned that such fear is fed by ignorance and, recognizing my alternatives, I canceled my treatment. It was a risk, but no worse than the risk this procedure posed to my immune system. Taking action based on my own knowledge freed me, and I was no longer afraid.

And now, after 10 years and no further treatment other than basic annual check-ups with a general physician, there are no recurrences of cancer. I've been in good health ever since.

Sharing with Others
One day I wrote, "We know our gifts best when we share them with others." After dealing successfully with the medical system, I decided to help others do the same. I knew that group support contributes to survival, and I hoped to reinforce that with the benefits of writing.

With another therapist, I formed a center to promote the psychological well-being of people facing a life-threatening illness. Through the American Cancer Society, we offered free group sessions for people dealing with cancer. We encouraged participants to keep a journal, and it turned out to have real value.

One member of the sessions, whose leukemia diagnosis was delivered on the same day as his first child, struggled to come to terms with life's shocks. His journal entries gave him the courage to undertake a risky procedure. Another member, a timid woman, used her journal to develop a bold persona that enabled her to confront the doctor whose misdiagnosis had cost her an arm.

It wasn't easy to confront the fears I faced with cancer and to push ahead through treatment. However, keeping track of progress and putting a plan into writing through a journal gave me perspective and made me accountable for my own decisions. In the end, this little tool was the medicine I needed: It was restorative. And it remains a powerful record of my emotional and healing progress.

This article originally appeared in the April 2001 issue of Personal Journaling.

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