I wish I could say things have become better since I wrote about my current health issues a few weeks ago. But for the most part they haven’t.
My chest isn’t as tight as it used to be, and I’ve started addressing my fatigue with energy drinks. V8 V-Fusion, to be exact. It’s healthier than coffee or pop, but with enough caffeine to give me a boost. It has definitely made a difference. But I’m still not back to “normal.”
I’m down to two treatments a day now, as opposed to three, which is progress. My doctors seem satisfied with that and, in a different circumstance, I probably would be, too. But next month, my parents and I will be taking a train to the New York City/Boston area for about a week and a half as part of my Amtrak residency.
All of our luggage needs to fit in a small sleeper cabin, which means that– well, we can’t just lug our decades-old medical equipment halfway across the country. I have to find out what’s wrong with me, and do it in the next six weeks.
Everyone I’ve talked with seems to think it’s inflammation, so we’ve scheduled a bronchoscopy for Wednesday, April 12, at 9 a.m. It’s a pretty easy procedure: An anesthesiologist will put me under conscious sedation, and a surgeon will coax a small tube, with a camera attached to one end, down my nose or throat to check my airways. They will look for signs of inflammation or, yes, cancer. And maybe, finally– hopefully– they will figure out what’s wrong with me.
According to the websites I’ve scoured for information (Hey, Siri, what’s a bronchoscopy? Hey, Siri, does a bronchoscopy hurt? Hey, Siri, how do you spell “bronchoscopy?”), the whole thing takes about 20 minutes. The procedure is even considered outpatient. When I asked my aunt, who’s a nurse, about it, she said something like “easy-peazy” (my words, not hers).
I’ve had a fear of operations — probably an irrational fear, but a fear all the same — for as long as I can remember, starting with my spinal fusion. In 2002, a surgeon implanted two metal rods in my back to keep my spine from curving. I was told point-blank that I could die: The anesthesia would put me to sleep and, due to my “leaky muscles,” I might never wake again.
I was 8 years old. How is an 8-year-old supposed to come to terms with the probability of her death?
The answer, of course, is: She doesn’t. I didn’t. I haven’t.
My dad asked me why I’m nervous about the bronchoscopy. You won’t even feel it, he says. You won’t even remember it.
He’s trying to help, I know. But I imagine myself on an operating table, a nurse trying to get my veins to accept the foreign edge of a sharp needle. I imagine the cool, sluggish creep of anesthesia. My mouth is pried open, and I think, I don’t want to die, God, please don’t let me die.
Somewhere inside me, a pipe wrenches loose, and my body is flooded with a dark, unidentifiable liquid. It sticks to the roof of my mouth, the flat of my tongue, as gummy as anxiety. I can’t breathe.
I tell my dad I’m afraid. I tell him I don’t want to die.
I’m trying not to think about it. The fear is there, as inescapable as ever, but it’s easier to ignore if I keep myself distracted. So I binge on Crazy Ex-Girlfriend, stress-eating Cheez-Its and ice cream. I listen to the same song, over and over again: White noise is better than no noise.
It’ll all be over soon. It might not be good news — especially if it’s lung cancer, even though I’m pretty sure it’s not. That doesn’t stop me from playing out the scenario while lying in bed at night, trying in vain to fall asleep. But at least it’ll be news. At least I’ll know one way or another.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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