Sorrow in the trenches
Luis Vierra (not his real name) came to our clinic thinking he had sinusitis. Sixteen, handsome enough to draw crowds away from a boy band convention, and with a haawt & steady girlfriend back home, Luis had much better things to do than sit around all day in the County Hospital clinic. He couldn't breathe through his right nostril. As for the swelling alongside his nose, he figured that "just happened" with sinusitis -- that and the pain, a dull, penetrating pain, like brain freeze from hell. The numbness of his cheek skin puzzled him. It didn't puzzle us.
***Despite what we told our interviewers, very few of us went into medicine because of a selfless desire to help others, relieve pain, or vanquish disease. Some pre-meds wanted to be doctors because they feared death. Others did it because they were raised in medical families and knew nothing else. Back in the late 80s, a few idiots even did it for the money. If wealth is your number one goal, do not go into medicine. I had several twisted reasons for going to medical school, but more on that some other day. It took me about ten years to figure out the real reason, which is my hatred and fear of illness. I don't fear death -- when I'm dead, I'm dead. You know something? "Fear" is too weak a word. Illness terrifies me. If you don't understand yet, read on.
***Luis's odd combination of cheek numbness and piercing pain was one of those paradoxes cancer so dearly loves. Nevertheless, whoever first examined Luis must have felt that twinge of denial we all feel in this situation. I'm going to touch his cheek and it will all be soft tissue swelling. I'll look up his nose and see pus, maybe a bit of redness. But, no. The swollen area beside his nose felt like granite. His right nostril gave us a window on the tumor that would change him forever. A biopsy and a CT scan later, we learned it was far worse than what we had first imagined. He had chondrosarcoma, an aggressive cancer. It filled his maxillary sinus and had eaten away much of his cheek bone. It had worked its way up into the orbit, too. We wouldn't be able to save his eye. Only four or five years later, we would begin hearing reports of successful treatment with a combination of chemotherapy and radiation. The only treatment option at the time, if I remember correctly, was surgery with post-op radiation. To have any chance of success, the surgeon had to completely remove the cancer with the first operation. You couldn't go halfway on chondrosarcoma. I imagine the choice seemed depressingly simple to Luis and his family: agree to the operation or die. His parents signed the consent.
***A few years earlier, in medical school, I heard about a child who had an advanced pelvic cancer. He hadn't responded to chemotherapy or radiation. Surgery was his only option. Unfortunately, the operation would be a hemicorpectomy. Hemicorpectomy is every bit as vile as it sounds. I won't distress you with the details; you can google it, if you wish, but be warned: it doesn't get much worse than hemicorpectomy. I remember the rage I felt hearing about this. Why would the surgeon suggest such a horror? On hearing an explanation of the procedure, how could the parents do anything but assault the surgeon, or at least scream at him to leave the room? Back then, I didn't understand that parents will do anything to save their children. Anything. Even if the odds of long term survival are 5% or worse, most parents say yes, because the alternative is unthinkable. I don't know what happened to that child.
***Before his operation, Luis's girlfriend and family stayed at his bedside. On those rare occasions when they weren't around, Luis would hang out by the chart racks charming the young nursing students. He was a shameless flirt. I didn't see his operation, but I know it took all day. His youth and strength served him well, and he got through it without complications. My job as intern was to change his dressing once a day. One thing about cutting back to healthy tissue: the surgeon cuts back to healthy nerves, too. Luis required hefty doses of morphine to tolerate these daily sessions. I could have used some Valium, but interns don't bitch or whine. You bite your lip and do your job and keep your thoughts to yourself. The main thought, the one I had each time I changed Luis's dressing: He looks like a Netter drawing. His operation went beyond a total maxillectomy, including sacrifice of the eye, the lateral half of his nose, his upper lip, all of his cheek skin. I could see into his nasopharynx. I could see the base of his skull. Back then, our head and neck surgeons did delayed reconstructions. The idea was to allow the wound to heal slightly (granulate, for you folks in the biz) so that the graft would stand a better chance of taking. The graft would be a free flap: a portion of flesh taken from elsewhere and fitted in place, artery hooked to artery, vein to vein. Luis's void would be filled with featureless flesh. He survived that operation, too, but by then I had moved on to a different service.
***I heard bits and pieces of what happened afterwards. His girlfriend broke up with him. His cancer recurred. He was told he would have to have the flap removed so that the cancer could be removed. Given that bit of bad news, he locked himself into a bathroom with a rifle. Someone managed to talk him out of killing himself. I don't know what happened to the child with pelvic cancer, and I never heard the end of Luis's story, either. By the time I was back on service as a second year resident, Luis was gone. No one talked about him. I didn't ask about him, either. I knew better. I did my job, bit my lip, and kept my thoughts to myself.
***Parents aren't alone in making these desperate decisions. It tires me to think of all the adults I've known who have chosen the harrowing, maiming operation in exchange for a glimmer of hope. Now, at last, I have a patient who told her surgeon no. I'm doing what I can under such circumstances: I see her regularly, I make sure her needs are met, and I'm giving her a good understanding of what to expect at the end. I'm not abandoning her, and that's the main thing. But it's one thing to decide such a thing for yourself, quite another to decide it for your child. What would I do? I hope I'm never in that situation. I hope none of you are, either. My best wishes to you all. D.