Good day, dear reader. This afternoon seems a good time for a slow step back through history. I’ve received some questions about the chronology of my disease and its progress, so I think a full retrospective is in order. Since I’m not sure exactly when my original health issue became cancerous (or, for that matter, whether it was in the first place or not), I’ll be stepping back a bit further than you might imagine. Please keep in mind that I’m scribbling this from memory, so there may be a few inconsistencies in dates and such; I suppose I could look back through the files of paperwork that I have, but that seems a bit excessive at the moment.
The first symptoms of the initial infection date back to November or December of 2005. I had been visiting my parents for either Thanksgiving or Christmas (I honestly don’t remember which it was, but it was more likely Christmas). At the time, they lived in Michigan, about a twelve hour drive from my home. On the drive back, there was an occasional, sharp pain on the left side of my tongue. I assumed that I had bitten it without noticing, or that there was some other minor complication, like when you get an infected taste bud that swells up and becomes uncomfortable. At the time, I didn’t think too much of it. However, over the course of the next couple of days, the pain didn’t subside, and I noticed a mild discoloration in the area. So, I decided to visit the doctor to let him take a look.
Upon my first visit to the doctor – this one a general practitioner – he quickly diagnosed the problem as a viral infection. He informed me that the cause of the irritation was likely a cousin of the common herpes simplex virus to which more than eighty percent of the population over 18 has at some time been exposed. He explained that most people’s immune systems can deal with the virus without symptoms ever becoming visible, but that things like sleep, poor diet, etc., can weaken the immune system and prompt an irritation to occur. The doctor made the requisite, “Who you been kissing?” joke (which did not go over as well when I got home and told this story to the woman who was my wife at the time) before informing me that eventually there would be a cure, but that for the moment it was necessary to treat the symptoms. He wrote a prescription for an amalgam mouthwash – the two major ingredients that I remember were an anesthetic and an antihistamine – and told me to use it twice a day for until the symptoms subsided. After I started using the mouthwash, the ulcer disappeared within three or four days.
Over the next three years, the ulcer would come and go. It was always in the same place, always about the same size and color. It would recur perhaps once every four to six months. For the first few recurrences, I returned to the doctor’s office to have it examined. The results were always the same. There was never any mention of alternate explanations or the possibility of the need for a biopsy. The doctor seemed convinced that his diagnosis was correct; I did not question him. Each time, he would order a refill of the same mouthwash; each time the ulcer would disappear within a week.
<UPDATE>: To answer a question that came in through email – no, in this span of time, no alternate diagnosis was ever mentioned. There were no mentions of tests, biopsies, or other means to confirm or refute the doctor’s diagnosis. He was confident that his diagnosis was correct; the medication worked as he predicted, so I didn’t question him. I probably should have, but more on that later. Specifically, even the possibility that this was cancerous was never mentioned. And it simply didn’t cross my mind.</UPDATE>
On Christmas Eve of 2008, I awoke with a low-grade fever and basically felt like crap. It was nothing major, just a touch of the flu or an upper respiratory infection or something. It passed after about a week, but the interference with my immune system prompted another outbreak of the tongue ulcer. At first, I didn’t think this was a big deal, as this would be the sixth or eighth occurrence of the infection. I assumed that the traditional treatment would have the same results. Suffice it to say, the treatment proved less than effective this time around. Over the next couple of months, the ulcer persisted; it neither (particularly) worsened nor improved. By the beginning of March, there was growing concern on my part, so I scheduled another visit to the general practitioner. At this time, he conceded that he was uncertain why the ulcer (which should probably be called lesion at this point) was not healing as it had in the past, and he referred me (finally) to a local otolaryngologist, more commonly referred to as an “Ear-Nose-Throat Specialist” (ENT).
On my first visit to the ENT – about two weeks later – he reviewed the history of the condition and agreed that it was possibly a viral infection. In addition to prescribing a variation of the mouthwash that had been working over the past few years, he added an anti-viral medication as well. We scheduled a follow-up visit for one month later. By the time of the follow up appointment, the lesion had visibly worsened. At this point, the ENT indicated that he wanted to to a biopsy prior to continuing medication. So a week later, a biopsy was conducted; ten days after that, I was informed that the results were positive for cancerous growth – specifically, squamous cell carcinoma, which honestly meant very little to me at the time. I was scheduled for a consultation with an ENT cancer specialist at Vanderbilt Medical Center on May 22nd of this year.
Over the next couple of weeks, the lesion on my tongue continued to worsen. There was open, sometimes continuous bleeding. I would wake in the morning with bloodstains on my face and pillow. It was an all around charming experience. I returned to the local ENT’s office to have the damn thing cauterized. Attempts were made using silver nitrate to close the bleeding areas up. These would usually hold for somewhere between twenty-four and forty-eight hours. Then the lesion would rupture again, the bleeding would recommence, and life became even more unpleasant.
While all of this was happening, I was trying to avoid things that I found exacerbated the problem – like eating and talking – so I began dropping weight and wasn’t a particularly social creature. Plus, I was in a hell of a lot of pain. Adrianne and I were in rehearsal for a play at the time; I tried to confine my speaking to only those times most necessary at the office and when I was on stage. By May 6th, the bleeding had become basically unstoppable. I returned that day for to the local ENT for the third attempt at cauterization. The physician’s assistant who was conducting that particular procedure consulted with one of the physicians on staff, and I was referred to the local emergency room for a more dramatic cauterization that used some form of electrical impulse (as I understand it; I was asleep at the time). Adrianne and I went to the hospital, I was admitted, and we eventually met up with my doctor. He explained the basics of the procedure, and I was prepped for surgery.
When I awoke, I was in the back of an ambulance. I first noticed that I was unable to speak and that there was a tube protruding from my throat. This was unexpected. And a bit uncomfortable. And all around unpleasant.
It was the morning of Thursday, May 7th, and I was on my way to Vanderbilt. The exploratory surgery (and follow up rubbishy bedside manner by the surgeon there) would be the next day. The following Tuesday, I would lose my tongue.
When cancer – or any disease, I suppose – claims part of your body, part of your skill set, there is the temptation to indulge oneself in the could/would/should triad of blame-guilt. And there’s been quite enough of that to go around, apparently. I learned today that there are others who blame themselves for my losses, who feel they should have said something sooner, encouraged more medical responsibility. Hell, I could have been less trusting and more inquisitive – usually I am, why not this time? Maybe Adrianne is right – maybe I was afraid of the answer and just didn’t realize it consciously. Maybe.
But I have to ask myself a few things before wading out into that sea of guilt and regret. What have I lost? I can still taste. I can still speak. In eighteen months, no one who doesn’t know me personally will be able to tell that I have a speech impediment. Yes, this is one of my goals for myself. Never tell me the odds1. My surgical margins are clear. We’re treating whatever microscopic minions are hiding out with chemotherapy and radiation. I will have a full, normal, healthy life.
What have I gained? I got my brother back.
I’ll take cancer any day.
You see, on the day of the exploratory surgery, when they installed a patch to staunch the flow of blood from the lesion, as I was recoving in that delicious semi-conscious state of drugdom, my family was told of everything to which I could look forward. Knowing me as they do – and how stubborn I can be – my family was not completely convinced that I would agree to the glossectomy. They saw, rightly, how deeply this would affect my life. My speech – and being so enamored of the sound of my own voice – was such an integral part of who I was (and, to an extent, still am) that they worried that I could not make the choice to give it up. Adrianne shared with me the pain and anguish that they all felt that evening, the hesitation and the inability to visit me for fear of cracking under the burden of knowledge that I did not yet possess. I understand their suffering on that evening, and I am sorry that they had to deal with that pain.
The next day, Saturday the 9th, the surgical team explained to me all that would be necessary. Given the options, I chose the surgery (obviously). You have the rest of the story already – leading up to my discharge from Vanderbilt on May 20th, two day before my initial scheduled consultation. Had I waited, it is likely that I would not have survived. Of course, I did recieve a reminder phone call about that consultation on the 21st. That was sweet of them.
Until next time, take care of each other.
There are two mistakes one can make along the road to truth — not going all the way, and not starting.
ng the zombie apocalypse decrease dramatically. I can deal with the need to scavenge for clothes, ammunition, and contact lens solution (screw it, I’ll wear my glasses; they’re dead sexy), but trying to scrounge up sustenance with a sufficient number of calories and amount of protein that can be safely injected through a stomach tube could be difficult.
