HIS LIFE AND ILLNESS

Tim was the oldest of three children. When I first met him, he was 36 years old and living with his mother, a devout Irish-Catholic woman who was herself in poor health. No mention was ever made of his father, but his two sisters were devoted to him and their mother. Tim was, by his own admission, a loser. He had performed poorly in school and, while still in his teens, he had experimented with drugs and alcohol. He drifted from job to job without committing himself to any trade or skill. At 17 he married a young woman who was carrying his baby and he soon abandoned her and their infant daughter. At the time of his admission to the hospital he was unemployed.

Two years prior to this hospital admission, he had basal squamous cell cancer resected on his right cheek. A year after that he experienced an onset of mild to moderate headaches localized to scalp; pain on the right side was greater than on the left. Seven months prior to admission, he further suffered from a sudden onset of horizontal, then vertical diplopia with periorbital pain and later retroorbital, which left him without feeling on the right side of his mouth. He also lost taste on the right side of his tongue.

Tim was referred to the hospital for a work-up. I was assigned to him as his primary nurse. Slightly built, but with a rugged outdoors appearance in his plaid flannel shirt and jeans, his wink from the eye gave him a playful expression cut short by the scar of previous surgery. He had not been told of the serious nature of his symptoms and seemed not to be dealing with what was clearly, from any layman's perspective, a threatening set of circumstances.

During his brief stay at the hospital, he had an orbital venogram, which showed only right cavernous sinus thrombosis. He left the hospital to care for himself at his mother's home still with no prospects for a job. As we shook hands and said good-bye, I could not help but wonder why he had not taken advantage of the surgeon's suggestion to return for facial plastic surgery. The thought that came to my mind was perhaps he needed that scar.

Four months after this work-up, Tim returned in a seriously depressed condition. He suffered from severe back pain, he had lost weight, his right eye drooped, his vision was blurred and he knew things were getting worse. He now realized he had cancer; he was frightened and was losing control of himself. Following several conferences between the medical and nursing staff, a plan of treatment was suggested; radiation therapy to the whole brain and thoracic spine, and intrathecal methotrexate was ordered through a Richam Resevoir following the completion of radiation. This treatment was in response to the presence of squamous cells in cerebral spinal fluid as shown by lumbar puncture; diagnosis: carcinomatous meningitis.

Tim wanted enough “drugs” to be put out of his misery—“to finish him off.” He did not want to face his death. He requested heavy does of pain-killing drugs and he did in fact become delirious from the effects of drugs. It became apparent that if there were any hope for Tim to improve his physical status, he would have to work at his treatment without the drug-induced stupor. If he remained oversedated, drug dependent, he would not be able to marshal his energies to work with us on his treatment. We had two things to do—each seemed overwhelming to him. First, we had to work together on a plan of therapy. Second, we had to convince him that any such plan would be futile if he remained purely drug seeking. He now knew that he had metastasis to the brain and spine, and he wanted to avoid the pain that would precede certain death. Throughout his entire life he had avoided responsibility. During conferences and informal conversations, we discussed not only his disease, but also his person. Did he have it in him to work to live longer? Everything was explained to Tim in a straightforward manner with empathy. There was some small hope that the cancer could be arrested. After much thought and reflection, he decided to fight his illness and to affirm life. Tim and I made a partnership agreement in which I promised to do all I could to help him. In turn, he promised to do all he could to cooperate in the treatment. We would evaluate the entire agreement and treatment in 3 weeks. He agreed to request nothing stronger than acetaminophen and haloperidol. Much of the nursing care now became personal, as well as professional; there were backrubs, pleasant talks, comforting moments, and shared mealtimes. He grew in self-esteem as he managed the pain without heavy drugs. He became lucid and spoke with his family in a calm manner. Although there was never great hope that his cancer would be arrested, he achieved a victory in his own person. He took charge of his life; he was not controlled by drugs and was meeting this challenge with courage and dignity.

The change in Tim was astonishing. He seldom asked for attention unless it was truly needed. I spent as much time with him as I could. On occasion, some staff nurses thought the plan was cruel and that he should not have to suffer; they argued that heavy sedation should be continued. On one occasion a resident, unfamiliar with the circumstances, ordered morphine, but Tim rejected it and lived out his life free of drugs. Tim was doing battle not only with his illness, but also with his life as he had lived it.

As the weeks went by, the outlook worsened and he was told that he had only a short time to live. Nothing could stop the onslaught throughout his body. I recall how he thanked the physician for the truth and responded, “I am ready to die now; I was not when I came here.” He called his friends and spoke with his family with kindness and reassurance. He was reconciled to his only child and he prepared for his death. He made a will and kept to his agenda. In consultation with his family he decided to go to a hospice for his last days, and we left each other as friends. We spoke by phone several times and he never wavered from his conviction that finally he accepted life with all the energy any person could marshal. His life now had meaning. His very act of going to the hospice was an act of courage because he thought that there his family could more completely deal with his loss and their bereavement.