How an airway collapse brought … relief?

Author’s note: I wrote most of this column on my phone while getting an atypical mole removed. If you wondered why I disappeared from social media, it’s because I’ve been busy crossing things off my medical bucket list, like getting shot up with lidocaine and watching a surgeon suture my toe.

Cancer has always been my nemesis. I don’t know exactly when it came about — 2018, probably, when I somehow managed to convince myself that I was dying of brain cancer. I was gratefully disabused of the notion when a neurologist diagnosed me with tension headaches. I started getting weekly massages, and just like that, the headaches disappeared.

In my mind, all the different cancers are lumped into one, a nightmarish creature that operates outside the bounds of fairness and logic. I’ve put a stupid amount of time and effort into keeping myself healthy. You’re telling me I can follow the rules, do everything right, and still end up with a deadly disease that guts you from the inside out? Having a body really does suck.

Brain cancer is arguably the worst of the lot, but I have a particular distaste for lung cancer. It’s the irony of it all. So many SMA patients die of respiratory failure. It seems particularly cruel that you can do all the respiratory treatments in the world and still end up with cancer.

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It doesn’t help that the author in me has identified lung cancer as a thematically appropriate way for me to die.

Years ago, before my brain cancer scare, I convinced myself I had lung cancer. It wasn’t entirely unreasonable: My lungs were tight, and no one, not even my pulmonologist, could explain why. It wasn’t pneumonia. No amount of nebulizer treatments seemed to help, so we didn’t think it was inflammation. I even underwent a bronchoscopy — no small feat given my fear of anesthesia.

My pulmonologist found nothing. She couldn’t explain why my lungs, particularly my lower right lung, felt tight; it just did.

Fears of cancer dismissed, I slowly adjusted to life with tight lungs. I became a big believer in daily respiratory treatments. I never missed a nebulizer-vest combo, and when I did, I paid for it dearly. With time and patience, the tightness eased. It flared on occasion, but for the most part, I forgot I’d ever worried about lung cancer.

Then I drove to Alabama to buy an accessible RV. I was hospitalized with metabolic acidosis, which triggered a cascade of health issues, from mildly irritating to this is surely the end of me.

My chest tightened. I assumed it was a side effect of the aspiration pneumonia I had in Alabama, but no amount of antibiotics seemed to help, and every X-ray came back clear. That same old fear reared its head.

Cancer.

I took to the internet, as is expected of a hypochondriac. My primary symptom, the tightness, made sense. But I had no cough or wheezing. My oxygen saturation was better than my mother’s, something I checked and rechecked out of fear the numbers would change. They never did.

Still, I fretted. When my complex care doctor ordered a CT scan for possible gallstones, he offered to check my lungs as well. Part of me wanted to refuse; I’ve decided that, if I ever do get cancer, I don’t want to know, so I can live the rest of my life in blissful ignorance. But I opted to tear the Band-Aid off.

The scan came back clear. No cancer, no gallstones, nothing. My chest, trunk, and pelvis were “perfectly normal” — the phrasing of which he stumbled over, because anyone with eyes can see I’m the furthest thing from normal.

There were two incidental findings. One, I have thyroid nodules, which my doctor assured me were quite common. We’d schedule yearly ultrasounds to keep an eye on them, but for now they posed no danger.

Two, I have a collapsed airway in my lower right lung.

If any other doctor had said this to me, I would’ve lost my mind. But this particular doctor said it so calmly that all I could think was, oh. The collapsed airway was to be expected, he said, considering I was a sedentary wheelchair user. He wasn’t worried, so I wasn’t, either. I thanked him for ordering the scan and hung up.

I’m not dying, I thought.

I have a collapsed airway, I thought.

I was giddy, numb, and exhausted. I still am. But I have a little more peace now. No cancer, no gallstones — just a collapsed airway. I’ll be talking to my pulmonologist about it in May, but for now, at least I can rest easy.

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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.