Global Doc: Fading Youth

Author: Dr. Vincent DeGennaro Jr. ’02

Vincent DeGennaro

Jean Claude initially came to the Project Medishare hospital with a large belly full of fluid, his abdomen protruding as if he were nine months pregnant. He had difficulty going to the bathroom two months earlier and had had a colonoscopy with a biopsy that demonstrated colon cancer. A typical story of a patient who slowly developed the signs and symptoms of colon cancer, except for his young age — 24.

Over the next six months, Jean Claude would travel a journey too serious for a man, a boy really, of his age. I was blessed to bear witness to his journey, the slow march to eternity, understanding where it would end.

When he arrived, Jean Claude spoke to the medical team in near perfect English, with no discernable accent, only the cadence of his speech betraying that he was born and raised in Haiti. That October morning, he told us his story in a gentle, clear voice, his perceptive mother looking on, not understanding the language that he spoke, but fully comprehending the sadness and pain that he recounted. Despite the discomfort, he exuded enthusiasm, ready to conquer the battle that lay ahead.

Jean Claude had inherited his mother’s aptitude and quick wit, asking astute questions about medication side effects and the treatment plan. He had already investigated the possibility of traveling to Cuba for medical care, a trip that would cost his family dearly. More importantly, we could provide the same chemotherapy in Haiti that he would receive in Cuba. A CAT scan demonstrated tumor all over his belly, meaning that no curative surgery existed anywhere in the world.

“We’ll do everything that’s possible in Cuba right here in Haiti. You’ll be able to stay close to home and save significant money for your family,” I said to Jean Claude in English and in Creole to his mother. The possibility always exists that a terminally ill cancer patient dies in Cuba while receiving treatment, far from family and the world that they know, and then the family is forced to transport a body over the Caribbean Sea. When I worked in Rwanda, a few patients died while receiving radiation therapy in Uganda or on the other side of Rwanda; the families were forced to make the return journey in a private-hire taxi with the loved one in the trunk. I kept these details to myself.

“Terminal cancer patients don’t always process the situation, often ignoring what you say until they’re ready to hear it,” a respected oncologist in Miami had instructed me during medical school. “They’ll ask the questions again when they’re ready to hear the answer.” His words always ring in my ears when I discuss terminal illness with patients. Wherever in the world we are located, the principle never changes despite the varying availability of resources. Jean Claude asked me a dozen questions on the day that we met, and I informed him that he would get better with chemotherapy, but never be entirely rid of the cancer inside him.

We delayed starting chemotherapy by two weeks while we waited for the pathology lab in Miami to confirm what seemed like an impossible diagnosis made by the Haitian pathology lab—colon cancer in such a young man. Adenocarcinoma of the colon, the confirmation report from Miami said. “The patients rarely read the textbooks,” the oncologist had always said with a wry smile. In developing countries, the epidemiology of cancer rarely matches that detailed in the textbooks of Western countries. Differing races, genetics, socioeconomics, nutrition and environments lead to widely divergent cancer distributions between populations of rich and poor countries.

With the diagnosis confirmed, Jean Claude reported to the cancer ward on Monday morning to start chemotherapy. His mother came toting a bag of supplies, unsure what to expect. He tolerated the three-drug regimen with minimal side effects and went home. Over the course of six weekly chemotherapy administrations, Jean Claude’s belly returned to a normal size. He started the second eight-week cycle full-steam, and we continued to make progress towards the goal of lengthening his life by a year or two, while also improving its quality.

In January, the colon obstructed and required immediate surgery to alleviate the symptoms. A hole was created between the colon and abdominal wall, allowing stool to pass externally into a plastic ostomy bag. He was post-operatively hospitalized for two weeks. In that time, the fat deposits behind his eyes and in his temples had disappeared, giving his eyes the characteristic vacant look of an end-stage cancer patient. He spoke slowly and slurred the words as his dry tongue could not keep pace with his fading mind. Malnourished patients and, incidentally, those whose brains are hardened by years of drug or alcohol use, possess a characteristic cadence that signals the misfiring of neurons, slowed by damage from the lack of micronutrients.

“Doctor, I believe in God and I’m not afraid to die. Tell me what’s going to happen. Can I be cured?” Some patients hold on to the immortality promised by religion, until confronted with the reality of their mortality, then no longer an abstract concept. Jean Claude spoke forcefully, not needing to convince me or himself of the veracity of his claims — true courage reflected in his grace in the face of adversity. This wasn’t the colloquial adversity on an athletic field or a corporate ladder, but the adversity of passing peacefully from this plane of existence to the next. Jean Claude was ready to ask, finally processing where the journey might lead.

I slowly explained to Jean Claude the process of the next few weeks. I switched from English to Creole, not wanting him to miss any of the important details or force him to have to strain his declining mind. His mother wasn’t present for the conversation, and I left it to Jean Claude to decide how many details he wanted to pass on to her as he was discharged from the hospital.

He and his family decided not to return for more chemotherapy, feeling that the toxic medication was more than his fragile body could tolerate at that point, so the nurse called his mother every week for updates. Jean Claude’s mother came to the cancer ward three weeks later seeking more medications for his symptoms — vomiting, heartburn, constipation and, of course, pain. We talked about how he was doing and she asked a stream of insightful questions.

Two weeks later, in the middle of April, a thin, frail man slumped on a wheelchair in front of the clinic office. His head lay to one side, harshly tilted as if it weighed two tons. Jean Claude’s eyes were deeply recessed in his skull, casting an oblique glance up, a momentary raising of the eyelids the only acknowledgement of my presence.
I clasped the back of his neck, gently rubbing the occiput of his head as he turned his bony hand over on the armrest of the wheelchair, silently asking for my hand in comfort. I obliged and grasped forcefully as I explained to his mother the conversation that she had missed two months earlier. Either Jean Claude hadn’t divulged the gravity of the situation to her, or she was still not prepared to confront the wretchedness of his condition. Throughout the conversation with his mother, Jean Claude remained fastened in the easiest position to support against the unforgiving forces of gravity. There isn’t anything that we can do to cure him, I said. Let’s focus on keeping him comfortable at this point.

Near the end of the depressing conversation, Jean Claude lifted his head and began to talk — like a dormant marionette suddenly come to life. “Please do something. You promised me that you’d do everything possible. I want to go to Cuba,” he whimpered, his voice breaking with strain at each emphasized word. His quiet confidence two months earlier had all but disappeared, and the withered man on the wheelchair had been reduced to a boy holding onto his mother for protection.

“You told me before that you were not afraid to die — focus on that strength now,” I suggested, unsure how to best be present for him.

“I’m not afraid to die,” he paused momentarily before continuing, “but I don’t want to die.” His head lolled onto his mother’s shoulder again. Small tears formed at the corners of his sunken eyes, too dehydrated to roll down his emaciated cheeks. We sat a minute in silence amid the whorl of the hospital around us, his mother glancing at me briefly before focusing back on her dying son.

Jean Claude died three days later.

Vincent DeGennaro is an internal medicine doctor and a global public health specialist at the University of Florida’s Division of Infectious Diseases and Global Medicine and works half time in Haiti with the nonprofit Project Medishare. See his An American Doctor in Haiti blogs.