Martineau, Hermide, Michelle, Anne, and I were committed to getting Janel the care he needed in spite of all of the obstacles we faced because we held true to this notion. Janel is a person. We were not under any illusion that we could solve the world’s inequities, but helping Janel gave us the chance to try to right one individual wrong, to try to rectify one grave inequity. This is the work of PIH that had inspired me to want to work with them: to create systems that help the poorest individuals, to counter the notion that some lives are worth less than others, which Paul Farmer has called “the root of all that’s wrong with the world.”
Why should the country where Janel was born or his poverty mean he shouldn’t receive the highest standard of medical care? On the contrary, PIH defines its mission as providing a preferential option for the poor, since the poor are preferentially affected by disease.
Tout moun se moun. Every person is a person. Somehow the debate about risks and benefits of more chemotherapy seemed less theoretical with this proverb in mind. I couldn’t speak Creole well enough to ask Janel what he wanted. He wouldn’t have been able to respond anyway. But I thought of how Wilner insisted that Janel and his family wanted to do everything possible in pursuit of a cure, and we had the opportunity to offer that to him.
How were we to know where his fluctuations would land? Maybe there would be more and more good moments as time went on. Or maybe this was how he would spend his years, mostly detached from the world around him but with occasional moments full of life. Either way, didn’t he still deserve every chance at a full cure? Who were we to decide if it was too difficult—for him, for Hermide, for the hospital—to continue his treatment? Even if it might be overtreatment, wasn’t that better than risking undertreatment? If we could possibly extend his life, why shouldn’t we try? A few more difficult months would be a small price to pay for this.
Tout moun se moun. Every person is a person. Yes, that was the principle on which this whole endeavor rested. I decided we shouldn’t give up.
I felt moved by my reflections but had no way of sharing them with Janel, no way of asking him what he thought.
“Dako, Janel, m prale,” I said, patting him on the hand. (“Okay, Janel, I’m going.”)
He didn’t react. If he was in there somewhere, I hoped he knew that I would keep fighting for him.
As I exited his hospital room and began washing my hands at a sink in the hallway, I saw one of the oncology professors I had worked with during my internship—the first year of my residency. My internship was the most challenging year of my life. I often spent eighty or more hours per week in the hospital, working thirty-hour shifts, not seeing the light of day for weeks at a time in the depths of the Boston winter. During some of the darkest hours, this oncology professor had been a beacon of warmth and compassion to her interns and to her patients. Her extraordinary bedside manner had reminded me why I was going through the struggles and sleepless nights of this grueling training: to reach her level of skill and grace as a physician.
“What brings you back to the oncology ward?” she asked, smiling softly, cocking her head slightly to the side.
“How much time do you have?” I joked, trying to smile but still very much wrapped up in the reflections that had just moved me at Janel’s bedside. “The short story is that we brought a patient here from Haiti for the largest brain tumor any of us had ever seen. It’s a pineal tumor so rare most of us had never even heard of it: PPTID—the tumor between pineocytoma and pineoblastoma. Anyway, it took two huge surgeries to get it all out, and then he needed a shunt. Now he’s just finishing six weeks of chemo and radiation . . .” I trailed off.
Suddenly I felt shocked and saddened by my words. Had I really processed all that Janel had been through? Running through it out loud gave me pause. I had just decided in my mind that I should fight for him, but did he even want to be a passive recipient of that fight? I realized I didn’t know.
I tried to continue. “There are a lot of longer stories in there, but . . .” I broke off again. I was a little choked up. I felt like I had just had some sort of clarity while sitting next to Janel, but now I wondered whether it was really about him or more about me applying the principles to which I aspired in his care. Sure, every person is a person. But does every person need to suffer through an unproven, aggressive chemotherapy regimen more than one thousand miles from home?
My oncologist colleague kept smiling warmly at me, nodding slowly, waiting patiently for me to continue.
I tried again. “He’s had . . . a rough course . . . but, well . . . he’s . . . I guess he’s getting a little better. I mean, he fluctuates, but . . .” I looked up and forced a sad smile. “Anyway, sorry, I’m rambling on. It’s kind of a long story.”
“Sounds like a journey for him and for you,” she said. “You know, I have an oncology colleague who used to work for PIH. I remember how she used to bring chemo over to Rwanda in her suitcase for PIH to treat cancer patients there. It’s amazing work you guys do.”
I asked her how she was and how her work was going, and tried to listen as she told me. But my thoughts had latched on to what she had just said. Could we give Janel the rest of his chemo in Haiti? He could be with his mother. He could get rehab at HUM. He would surely be much happier at home. Lost in these thoughts, I said goodbye to my former oncology professor and wandered back to my office.
Getting the medications to Haiti and administering them would be no problem. The risk would be if Janel suffered complications from the aggressive chemotherapy. He could be hospitalized at HUM if that happened, but would he have the same chance for a good recovery as in the US? What if they couldn’t get the right lab tests or medications? After all he’d been through in the US and all we’d done for him, I didn’t want him to die a stupid death from a complication in Haiti that could have easily been managed or prevented in Boston.
I discussed all of this with Anne, Michelle, and Janel’s oncologist. Our consensus was that we would let him recover and get rehabilitation in Haiti for the next six weeks, then bring him back to Boston for his first round of chemotherapy to see how he did. If it went well, we could do the rest in Haiti. If there were medical complications, we would have to think about doing the entire six-month course in Boston.
Janel was discharged back to Hermide’s house with the plan to get him home the next time PIH had a nurse or doctor traveling from Boston to Haiti who could fly with him. The rehab team at HUM arranged for a bed on the rehab ward to be available for him when he arrived.
Janel mostly slept at Hermide’s while awaiting his return to Haiti. There were no struggles.
On the morning of Janel’s flight, Anne went to the airport to meet Hermide, Janel, and the doctor who had agreed to have Janel travel with him to Haiti. The doctor was a young man, short-haired, clean-shaven, spectacled, and relaxed. Anne briefed him on Janel’s condition and explained that he might have had some seizures after one of his surgeries, but it wasn’t certain, and Janel was on an anti-seizure medication just in case.
While Anne spoke, the doctor looked past her at Janel sitting in an airport wheelchair with his usual wide-eyed stare, tufts of hair growing around the large scar across his scalp. Anne thought the doctor looked increasingly uneasy about what he had agreed to. But if he was nervous, he didn’t say so. Anne told him not to worry, Janel would probably just sleep for the entire flight. She assured him he could call us if there were any issues.