I guess tumors of the head are a thing for film critics: Roger Ebert, Gene Siskel ... and me. Not that I would ever compare myself to those giants. Except tumor-wise.
Anyway, I recently was diagnosed with a brain tumor. I'd been vacillating on whether or not to make this information public. I considered just letting a few close family and friends know, which I did. But then it became a game of second-guessing myself about who knew and who didn't. Family being what they are, they told a few others and ... ye olde whisper game commences.
Besides, my long tenure as a journalist/film critic/marketing writer has ingrained in me such a strong proclivity to share news that, even when it's about myself and very personal, I find I have a hard time keeping anything in for long. As I once wrote on my profile for a dating website, "My big, dark secret is that I have no big, dark secrets," and that still holds true.
So -- band-aid off!
It's not a tumor!
Well, the first principle of reporting is to be accurate, so I should say first off that technically, what I have is not a brain tumor. It's what's known as an acoustic neuroma. And it's not really in the brain, but next to the brain stem. It's a rare type of tumor, only about 3,000 diagnoses every year, according to the Acoustic Neuroma Association, the information/support group that's sprung up around it.
Actually, though, "acoustic neuroma" is a misnomer -- it's really a vestibular schwannoma. A neuroma is a tumor of the nerves, while a schwannoma is a tumor on the myelin sheaths that insulate nerves. Medical distinctions like this are important, I've learned.
I just find it slightly hilarious that the association created to address a disease is misnamed after another kind of disease. You'd think somebody at some point would have suggested making the switch: "Hey Bob -- maybe we should actually be named after the thing we're fighting? Like, the tuberculosis people don't call themselves the Asthma Council."
Though as someone whose day job has been in marketing/branding the last few years, I'll be the first to admit that "vestibular schwannoma" just doesn't have the schwing of "acoustic neuroma."
And of course neither holds a candle to "brain tumor" -- which is what I've been using for shorthand, and really has no equal for putting the fear of God into people when you say it out loud. I've found that most other patients do this, too.
Anyway: I'd been experiencing some hearing loss in my left side, following an ear infection in the spring. It never really cleared up properly; the Flonase my family doctor prescribed to help do so did diddly, so I made an appointment with an otolaryngologist (ear, nose & throat doc), who pierced, drained and tubed the eardrum.
Problem solved, we all thought.
But the issue persisted, a hearing test showed mild to moderate hearing loss on one side while an examination suggested something else, so an MRI was ordered, and walla: My schwannoma.
(Will you think less of me if I tell you that since the diagnosis I keep singing The Knack's "My Sharona" inside my head, with the words transposed? I'm considering rewriting the lyrics entirely to fit my situation: "Oh my little pretty polyp, pretty polyp. When you gonna get into my spine, schwannoma?")
First, the good news: it's benign, as all schwannomas are. It's a slow-growing tumor, usually only 1 to 2 millimeters per year. Mine is rather small, but even so it's likely I've had it "on my mind" for some time. The ear infection didn't cause it, merely happened to happen around the same time. In all likelihood, the infection helped reveal the tumor early. And in about one-third of cases, the tumor grows to a certain size and stops on its own.
Now, the unpleasantness. Treatment options are, well, kinda crappy. There's radiation and microsurgery, which have a very good chance of reducing/eliminating the tumor, but also about a 50-50 chance of rendering you completely, permanently deaf on that side. Even a hearing aid won't help.
The radiation might have to be repeated every few years in case the tumor does grow back, with the same crapshoot for hearing loss each time. In general, most radiation patients find their hearing significantly degrades over time. And in a very small percentage of cases, instead of killing the tumor the radiation turns it instantly malignant; it's essentially a death sentence.
Surgery has its own legion of downsides. There are three different ways to go in, all involving opening up the skull, cutting through the dura (protective membrane ) around the brain, draining the cerebrospinal fluid, probing deep into the intracranial spaces near the middle of the skull, and getting the bugger out.
The surgeon is messing around with the major nerve controlling hearing, motor control and balance, and face muscles. So even if hearing isn't destroyed, common side effects are facial paralysis and the inability to walk or drive. Many patient lose the ability to blink, at least temporarily, and must keep an eye bandaged to prevent it from drying out and suffering permanent lens damage.
Typically, surgery means a week in the hospital and up to four months until you can return to work (though many patients are back into a normal routine much sooner). And, needless to say, massive medical bills associated with brain surgery.
So. Well. Shit.
Sussing all that out, there's a pretty miniscule chance of this being life-threatening -- about the same as getting run over by the Wienermobile while walking to my car -- but a pretty decent chance that I'll lose all hearing on the left side, or need a hearing aid to augment the hearing I have left. And an invasive surgery with a prolonged recovery, and the possibility of useful vision in only one eye, at least for a time. Or repeated bouts of radiation the rest of my life.
Umpires and movie critics
Don't think being half-deaf is a big deal? Try going into a large, crowded space with lots of talking and background noise, and plug up one ear with your finger. It becomes very difficult to filter out one sound source from another. Ditto for a modern movie theater sound system. Only by concentrating on a single thing at a time can you make sense of it all. It's the auditory equivalent of tunnel vision.
Whether as a reporter, movie critic, editor or marketing copywriter, a large chunk of my life has been spent keeping my ear to the ground and eyes on the horizon, sensing information that might be useful to others (even if it was just my own opinion) and finding a way to transmit it. So the prospect of losing key parts of my sensory array has left me more than a bit unnerved.
Literally a couple of weeks before my diagnosis, I wrote about the sound mix in the film "Interstellar," complaining that I couldn't make out much of the dialogue. Though it turns out this was a conscious choice by director Christopher Nolan -- and, I still deem, an unwise one -- I could only imagine how this observation would've been received after going public with my condition. People joke about baseball umpires being blind; how will they feel about a film critic who can't hear in stereo or see in three dimensions?
I am aware, of course, that in the grand spectrum of medical challenges mine is dwarfed by those of many, many other people. I am personally acquainted with people with Alzheimer's, who are dependent on wheelchairs, or have Parkinson's, or various other maladies that make their daily life a challenge I could never hope to understand, even if I were to suffer the worst possible outcome of side effects from treatment.
Just in the last two years I have lost my father and sister to cancer, including the latter to a brain tumor that went undetected in her head while they fiddled with and irradiated her nethers. I've been told that, as brain tumors go, mine is the "good" kind to have.
Still, that's kind of like saying that some hurricanes that make landfall in populated regions are preferable to others. It's a statement that is at once absolutely true and completely ridiculous.
To me, the only "good" hurricanes are the ones that stay out in the ocean, remote and lacking a quantifiable toll of death and damages. The same goes for brain tumors, methinks.