Dr. Elizabeth McKinley with her husband, Chip Gilkeson, and her son, Will, 14, and daughter, Katie, 11.
Dr. William Tierney, right, with Dr. Lisa Harris, who diagnosed his cancer.
We delineate eight general concerns (the "eight Ds") that we suffered during our battles with life-threatening cancer.
There was an undeniable shock... that disrupted all of the carefully constructed systems and routines with which we moved from day to day.… An example was found in the mindless greetings that we received from friends and colleagues after our cancer had been diagnosed. How does someone with the recent diagnosis of cancer answer the question, "Hi! How are you?" The most accurate answer is, "Not so good. I have cancer."
The shock of the diagnosis... introduced chaos into our daily routines that we had carefully crafted to maximize efficiency in performing everyday tasks. How should we rearrange our incredibly busy lives to continue to move forward, even if at reduced speed? What, if anything, should we eliminate? Eliminating an important activity felt tantamount to giving up... but we tried to carry on despite (and at times denying) our disease. The response to changes in our routines... spilled over into our personal lives, affecting the inevitable reconfiguration of relationships with loved ones and friends.
A couple of WMT's (William Tierney) friends thought that it must be comforting to be a physician when struck with cancer, because he could better understand his disease and its treatment than most cancer patients. However, the opposite was true: having actively cared for patients dying of cancer brought to mind vivid images of physical and social involution, the inevitable melting away of body mass, disability, pain, and morbid deathbed scenes. WMT was haunted by the vision of a patient with non-Hodgkin lymphoma who died on his inpatient service two months before WMT received the same diagnosis.
EDM (Elizabeth McKinley) recalls waiting for her first dose of flame-orange adriamycin, sure that it would kill her because of the awful side effects of this drug that she had observed during her first clinical rotation as an intern. Her roommate thought of chemotherapy as a powerful healing antibiotic, whereas EDM could only think of it as a poison.
The discomforts we feared most were physical pain. We knew that pain is controllable for most patients with cancer and as physicians we knew that we had greater access to pain medications than do most patients. Yet we both suffered from pain during our cancer treatment and feared (and continue to fear) the possibility that increased pain would accompany the recurrence and advancement of our disease.
At the time his cancer was diagnosed, WMT ran on a regular basis, lifted weights, and played tennis. By the time of his fifth round of chemotherapy, his quality of life was substantially worse than when his cancer was first diagnosed. In fact, because he wanted to continue to be active, especially after the myopathy (weakening of muscles) developed, he continued to ride his bicycle by using low gears and staying on flat Indiana country roads. However, because the ataxia (loss of coordination) caused by his vincristine-induced neuropathy (abnormal nerve function caused by the chemotherapy), he fell off his bicycle onto the roadside multiple times.
Drug and other Treatment Effects
We suffered through adverse effects of treatment (including nausea, vomiting, weight loss, insomnia, anxiety and depression) as silently as we could, not wanting to complain to our providers too much. Although we cannot know what goes through the minds of our patients when they suffer from side effects of the treatments that we prescribe, we both felt that because we were physicians, we should not complain. So we rarely complained about these adverse treatment effects unless we were explicitly asked about them.
As physicians, we were the ones on whom others relied for their wellbeing and, at times, comfort and consoling. Hence, we found it very difficult to become dependent on others for our personal and professional needs. But our cancers and treatments gave us no choice: We had to be dependent on our family members, friends, and coworkers. We discovered that others wanted to help us, even needed to help us to feel that they were doing something to ease our burden. We came to realize that the therapeutic effects of the dependency were bidirectional. We thus sought opportunities for friends and family members to help us, which consequently lowered our internal barriers against seeking and accepting help. Nonetheless, we found, as others have, that our cancer resulted in significant adverse effects on the lives of our loved ones who cared for us.
Not too long after receiving our cancer diagnosis, we experienced overwhelming feelings of doubt and doom. It was difficult to be optimistic and to carry on activities where the results were beyond the time horizon of a few months. Without hope, we were lost and miserable. However, when we found hope to be lacking, it was supplied in abundance by the large network of friends and colleagues that each of us had established during our careers. For example, despite knowing his survival probabilities, WMT found it tremendously comforting to hear stories of others who had survived lymphoma to lead healthy, long, and productive lives.
Although the authors feared the dying process, death itself was another matter entirely. We viewed death as the absence of both life and suffering, the sudden ending of existence, thought, and possibly the meaning of our lives. Regardless of our religious beliefs, we knew that death would be a leave-taking from our loved ones, family, and friends. We worried more about what would happen to those we leave behind than we worried about what would happen to us. What happens after death is inevitable and uncontrollable, but we could not help but feel responsible for the suffering and loneliness we would leave in our wakes.
Having Cancer Is Not All Bad
Having enumerated what is so bad about having cancer, we must state that having cancer has, in fact, had beneficial effects on our lives. Having cancer motivated us to think about what we were doing every day, to prioritize better, and to spend time on those aspects of our lives that are truly important. We have tried, and will continue to try, to give meaning to our remaining time. Having faced death, we have found life to be more intense.
Final Thoughts About Life with Cancer
We hope that by expressing our experiences with cancer, we will encourage providers of cancer care to better understand what their cancer patients are facing. We have this advice: Do not just focus on survival! Talk to your patients. You must try to understand what it is like to have cancer, to live with it and be treated for it, and to survive it or succumb to it. Acknowledge what you can do to help your patient and do it.
Excerpted from the June 2002 supplement issue to the journal "Medical Care."