Some things are just so damned hard to write about. People often ask me, “Why do you have so many animals?” The current count is 4 dogs, two horses and a cat. I used to say, “Because it’s good for my children to learn responsibility. Having a dog, whose life is so much shorter than our own, teaches them about love, and about death. They get to PRACTICE parenthood, before it’s for real.” The fact is, now my kids are grown. My animals are for me. They teach me about love, and acceptance, and courage, and stoicism and yes, about death. But how can one ever prepare for the death of a child? It shakes a person to the very core of his soul. I don’t practice pediatric radiation oncology. I am just not constitutionally suited for it.
So it was with remarkable dread two years ago, that I faced a consultation regarding the role of radiation therapy in a 25 year old man, who was the favorite nephew of one of my medical oncology colleagues. This young man had been a student at college when he suddenly lost sight in one eye. Initially he was misdiagnosed as having had a retinal detachment. Sadly, that was the result, and not the cause of the problem. The real problem was that he had a malignant melanoma, a very aggressive skin cancer that sometimes arises from the back part of the eye. By the time he was properly diagnosed, the disease had taken away all chance of preserving sight, and the eye was removed. It was an extraordinarily difficult choice for a young man to make—his eye, or his life, but he chose life. Or so he thought.
By the time I was asked to see him, about six months later, he had a different problem. The cancer had spread to his spine, and he was in excruciating pain. He had been on chemotherapy which had not halted the progression of the disease. Although melanomas are not thought to be very responsive to radiation, it was felt to be the last resort to try to get the pain under control. What I remember about that first meeting was his incredible demeanor, his grace under pressure, his forebearance, and his calmness. Here was a young man who already knew that he was going to die. If he was angry, I certainly couldn’t tell. This young man had decided to fight. And fight he did.
Fortunately, his spinal tumor responded to radiation and his pain abated. Despite the brief respite, his disease progressed –in his liver, his lungs, his bones and his skin, inexorably, site after site. His doctors tried experimental protocols, vaccines, immunotherapy, every conceivable treatment available. And each successive treatment failed—one after another after another.
The last time I was asked to see him, it was for pain resulting from a massively enlarged liver, loaded with cancer. My staff bent over backwards to make sure that he could be seen, planned and treated all in one session. In a radiation therapy department, this requires the coordination of at least 7 or 8 people, from the secretary, to my nurse and me, to my physicists, and finally to my therapists on the linear accelerator. Everyone wanted to help this boy. Despite his discomfort, and the shortness of breath caused by the liver constricting his lung capacity, he apologized for inconveniencing so many people. We treated him at the end of the day. I was surprised in the end that we were able to treat him at all, since it was so difficult for him to lie down and to be still, despite the fact that he had lost the use of his legs a few weeks earlier and was confined to a wheelchair. The plan was to give him a single palliative treatment of radiation then return him to hospice care. But it was far too difficult for me to say goodbye. Instead I said, “if you’re better next week, come back and we can give you another treatment.” I did not say goodbye. I never said goodbye.
That last treatment was Thursday October 27. He died on Halloween, October 31, nearly a year ago. His uncle, my colleague was kind enough to tell me that the last treatment helped him, even if only psychologically. Until the day he died, he talked about coming back to see his friends in radiation therapy, and me. He passed peacefully, surrounded by his friends and family.
Doctors are notoriously awful about dealing with death and dying. The experts say it is because we do not like to admit defeat and we do not like to face our own mortality. As a group, we detest funerals, and we do not typically go to funerals of our patients, particularly in the field of cancer medicine. The day came that this young man’s memorial service was held, in a beautiful garden at a public park, on a lovely fall day. There was not an open chair in the garden. Every single physician who had cared for this boy was there, and every last one of us was crying. Sometimes, we just cannot run away.
When I was sixteen years old, and in high school, my history class was shown 16mm footage of the liberation of the Nazi death camps by American soldiers at the end of World War II. I saw the hollow eyes, and the starved bodies of the survivors, too numb to even react. And bodies of the dead, piled beside the road. I remember that grainy black and white footage like it was yesterday. Because that was the day I began to question the existence of God.
I know that when people die, the survivors say, “He went to a better place.” Or “This has served a higher purpose.” But really, what do you say when a child dies a hideous death from cancer? If there is a higher purpose, I would really truly like to have it explained to me. My friends and acquaintances say to me frequently, “Isnt it SO hard to do what you do? “ Most of the time, it is not. But sometimes it is. This was the one that was the hardest of all.