Not too long ago, my upper lip on the left side went numb. It didn’t go away in a day or two, and then my tooth directly below the numb area became sensitive. I made an appointment with the dentist. I had just recently had a cleaning, and figured this new tooth pain was somehow related. Much to my surprise, my dentist informed me that nothing was wrong dentally. My mind locked on to the fact that this mysterious loss of sensation, while not in the same area, was on the same side of my head where I had all my work done. I contacted my doctors and scheduled MRIs and CT Scans immediately. I had to wait four long days to get all the scans done, and 48 more excruciating hours, each a microcosm of intense thought unto itself, to have the results dictated, interpreted, and analyzed by my doctors.
I have to admit that my thoughts prior to my appointment with Dr. Agulnik were not very positive, although I was certain that they were realistic. My constant focus (ha that’s a one eye joke) during these kinds of situations is to keep my thoughts and emotions level with the horizon. Not too high, not too low. By that I mean that I don’t get too optimistic over seemingly good news, and not too pessimistic over a setback. This kind of crisis is a mental and emotional endurance event, and your critical thinking skills are a finite resource negatively associated with the amount of anxiety you permit to live within. It is both antipathetic and ironic that every human’s ability to make decisions is most at risk when most needed.
And so I found myself headed to the place where no one wants to go, to the home of my people: the 21st floor of NMH.
A sea of bald heads, some covered in a range of scarves, hats, and other accessories greets you when you exit the elevator corridor. A quick scan of the faces reveals each to possess one of a small range of characteristics: fatigue, fear, or strength. It is strangely comforting to know that everyone there, whether patient or guest of the Lurie Comprehensive Cancer Center, is navigating the same waters of cancer treatment. We of the 21st floor are a community. No one joined this society of their own volition, but the membership is both compulsory and irrevocable.
My appointment was stunningly anticlimactic. In the short time since I had first noticed the numbness in my face, it had gotten a little more pronounced. I was afraid I may be worsening by the day. For the past year, I have been hearing how the probability of recurrence is completely unknown (my cancer is too rare to have any usable case data), but that a recurrence would most likely be “grave”, and that my outlook would be “poor”. Those two words have been seared into my brain, and I find myself unable to get the visual image of those Times New Roman characters out of my head.
The MRI shows an enhancement of certain tissue and nerves, but this information has such a variety of meanings as to be considered a possible indicator of a possible indicator of something that may be either positive or negative, or if not, then something neither positive nor negative.
Basically, the change in tissue may be a result of recurrence, or a buildup of scar tissue from the multiple surgeries in the area. Or both or neither. Or something else. The estimated probabilities for each are actually the same as the probability that a group of rogue miniaturized ninjas have managed to steal the secrets of cell generation from the scientologists, and are building an incredibly tiny altar to L. Ron Hubbard right on top of the V2 branch of my trigeminal nerve. The point is, no one knows what the odds are, so I’ve decided that they are 50/50.
Since I have become the self appointed world’s foremost expert on lacrimal gland adenocarcinoma (an easy feat since I believe I am the only patient of this particular breed), I have decided that I am qualified to divine my current situation. My doctors, with all their fancy degrees and “published writings” (over-rated), don’t have the intestinal fortitude to commit to an estimate of my outlook. They claim its because of a “complete lack of clinical precedent” and that there is “no usable information”, and further that “to form a prognosis on ambiguous information is bad medicine”. Fools! Its obviously 50/50, since that’s the only guess that can’t be wrong.
Anyways, the doctors have no idea what’s wrong with my face. We know there is something there, but not its nature. We know that whatever it is, we have identified it as early as possible. I am confident that all of the factors that can be under our control are squared away. The ironic nonsense of all of this is that right now is the scariest its ever been, because of the stakes involved, and yet there may be nothing at all to worry about. They’re going to rescan in 10 weeks, and see what changes have occurred. Until then, I’ll keep poking myself in the lip and futilely wondering if I have more/less/or the same amount of sensation as the previous day.
