At Mount Sinai Hospital in New York City, the head of the department, Dr. Eric Genden, laid out the initial course of treatment, and Dr. Richard Bakst took over my case from there. Upon meeting him it was evident that Dr. Bakst had been given an extra dose of bedside manner upon his graduation from medical school. But no matter how kind and reassuring he and his team were, my greatest fear was that one of the most important and vital parts of my life would or could be severely compromised, perhaps permanently. That important and vital part being the ability to taste, eat, and enjoy food.
How could they possibly expect me to willingly lose my sense of taste and smell and suffer the indignity of having to be fed through a tube in my stomach, the latter of which I was still determined to never be subjected to? They listened patiently as I expressed this fear over and over again in the form of countless questions, to which they always answered that, yes, indeed it would be hard going, and I would suffer the loss of my sense of taste and smell as well as most of my saliva, but it was more than likely I would make a full recovery in time. I didn’t believe them. But I did. Except for when I didn’t.
The Treatment
In order to undergo targeted radiation of the neck or head successfully, the patient’s head must be completely still. Five days a week for seven weeks, a bespoke webbed mask would be placed over my face, my neck, and the upper part of my shoulders and then pinned to a board to completely immobilize my head during the sessions. A “bite block” was then inserted through a hole in the mask and clenched between my teeth to keep my mouth and tongue also as still as possible. I was beginning to realize that, for better or worse, most major influences in my life come through this orifice.
After three treatments I developed labyrinthitis, a condition from which I had occasionally suffered in the past. It is an extreme form of vertigo causing horrible nausea and the inability to do anything but lie down until it passes. Unfortunately it also caused me to completely lose my appetite just as the radiation was beginning very quickly to take its toll on my taste buds, my salivary glands, and the flora and soft tissue of my mouth. After a week of treatments, anything I was capable of putting into my mouth tasted like old wet cardboard. A few days later everything tasted like the same old wet cardboard but slathered with someone’s excrement. A constellation of ulcers erupted in my mouth, as did viscous, wretched-tasting saliva. From this point on, day after day, all of the above just got worse and worse. The smell of any kind of food was repellent to me because it didn’t smell like what it really smelled like. Only the worst components of food were what I smelled or tasted if I even dared put anything in my mouth at this point.
My inability to eat anything save a few sips of beef or chicken broth continued. I made attempts to find something in the fridge to eat, but even upon opening the door I was confronted with odors most foul. As I said, I could only smell the worst components of any given food, therefore each of those components in every carrot, carton of milk, orange, and leftover roasted chicken sitting innocently in the fridge coalesced into a fetid wall of stink. I tried a few more times but soon ceased visiting the fridge and finally the kitchen itself entirely. If Felicity, who was very pregnant at this point but as strong as ever, entered the bedroom where I lay in a profound state of nausea, unable to even read, and if she had just eaten or had been cooking something, the odors that clung to her were so powerfully repellent to me that I would ask her to stand at a distance for fear of vomiting all over her. I was given protein drinks but could barely get them down. The morphine I was given to dull the pain and help me sleep caused such dreadful constipation that at one point I thought it might only be relieved by the use of a mini pipe bomb.
The irony was that while I was getting my chemo treatments once a week or getting intravenous fluids to hydrate me a few times a week in the hospital, I watched cooking shows. As they say or tweet, “WTF?!” This was an act of pure masochism, as even just the thought of food disgusted me. In hindsight I suppose it was a way to cling to what I loved or remember what I’d once had because I was so desperate to have it again. I was determined to make myself heal faster than any patient ever had. I would regain all of my sense of taste and saliva sooner rather than later, no matter what the doctors or statistics said, by watching MasterChef; Giada De Laurentiis; Iron Chef; Diners, Drive-Ins and Dives; and that gross, unnecessary show with the guy who eats as much of something as possible for no apparent reason and yet somehow still remains alive, because they were the fuel that was going to get me there.