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But read to the end: there is some light, and many people helped me along the way.Īfter she talked to Dr. I want to tell the truth as best I can, and that is going to include many dark moments. What follows is, as my brother Sam put it, a “devastating and horrific account, made even scarier because it’s real life.” But although the path was and is arduous, there have been real improvements: I can taste, I can swallow slurries, and there are moments of everyday life that pass for normal.
Hinni was forced to removed my entire tongue, or it would have become necrotic, dying and also killing the reconstructive “flap” made out of thigh tissue. Unfortunately, that affected 80 percent included both of the major arteries of the tongue.
Hinni performed a split mandibulotomy and flayed my neck open to assess the cancer, he found that the tumor had rapidly grown, leaving only 20 percent of the tongue tissue unaffected. My cancer moves unusually quickly: once Dr. The approach to a unilateral one-sided mass is a hemiglossectomy-the removal of half the tongue-although Bess and I also knew that the cancer might affect my larynx, which meant a real chance I’d awaken without a voicebox. Preliminary CT scans suggested that the cancer was, at most, a few months old, and those scans showed a tumor at the left base of my tongue, not the right. Hinni (the ear, nose, and throat (ENT) surgeon leading the surgery) would do what he considered necessary to remove all cancerous tissue. Going into the surgery, I knew that that Dr. It seemed entirely possible to me that he would just decide not to. I spent the first night in the hospital sitting awake at Jake’s bedside, certain that he’d decide to die after learning the news.
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The surgical margins were free of disease. She told me not to give up hope, and that the road would be long, but that not everything I feared and expected would come to pass. She reassured me that, if the surgery hadn’t removed Jake’s entire voice box, he’d likely be able to speak after a fashion again. In a panic, I called the one person I could think of: our speech pathologist, a woman named Jessica Gregor.
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Hinni had called me with an update and asked me if they should move forward with the removal? I threw up in the parking lot and felt sick relief that they hadn’t. We hadn’t even considered the possibility that Jake might lose his entire tongue. I walked into the hot night air and hyperventilated in the parking lot. Hinni explained that, because the cancer had grown in the short time between the April scans and May surgery, he’d had to remove Jake’s entire tongue, not just half-and with it, Jake’s ability to speak, to swallow, to taste-and the relief was replaced by horror. He got what surgeons call “clean margins.” Then Dr. Hinni finally called me in to tell me they were able to remove all the cancer, I was elated. Around hour ten, I started to wonder if Jake wasn’t ever getting off the table. The second, “salvage” surgery lasted twelve hours. I was supposed to lose only half my tongue, but that is not what happened- this is Bess’s description, from her perspective:
The surgery left my wife, Bess (we’d married the night of May 24, hours after learning that our surgeon had opened a slot on the 25th), in a panic. On May 25, I had a massive surgery that made me feel like I should be dead the surgery left me without a tongue, without some teeth in the bottom of my jaw, and without important nerves in my neck.
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