The Vacation That Tried to Break Me (But I’m Still Here, Sarcoidosis and All)

Living with sarcoidosis is like being the lead character in a long-running medical sitcom you didn’t audition for, but the writers keep renewing you because somehow the jokes land and the audience is emotionally invested. Every season comes with a new twist—some confusing, some enlightening, some that make you look at the camera like you’re on “The Office.” And just when you think the show might settle down, life hands you another storyline. This time, it decided to deliver it while I was on vacation. On a beach. During a thunderstorm. Because why not.

My sarcoidosis journey began in 2006, though my body had been hinting for years that things weren’t behaving as they should. When the diagnosis finally arrived, it wasn’t wrapped in clarity or comfort. It came with uncertainty and the kind of medical head-tilts that make you wonder if the doctors are trying to solve a puzzle or read ancient hieroglyphs. Scans, tests, more scans, more tests—the whole diagnostic parade marched through my life. Eventually an open lung biopsy confirmed it: sarcoidosis had set up permanent residency.

Then, as if that weren’t enough, along came a TIA—a mini stroke that barged into my life uninvited, but ultimately helped save it. While investigating why my brain briefly threw sparks, my medical team discovered a hole in my heart. A PFO, for those who enjoy medical vocabulary. Mine was plugged… mostly. It still leaks, because my body has never been a fan of following instructions all the way through. That discovery triggered a larger investigation, which finally revealed that I also had heart failure. And with that revelation came my next accessory: an AICD, an automatic implantable cardioverter defibrillator. A tiny device implanted to keep my heart in check. It has never shocked me—thankfully—and I’d like to maintain that perfect record.

The prognosis in 2007 was blunt and unforgettable: five years to live.

Yet here I am in 2025. Still breathing—sometimes creatively, but breathing. Still working full-time as a chef. Still writing. Still showing up for my life even when it feels like the scriptwriters keep slipping in surprise guest stars.

Since that grim prognosis, I’ve had two AICD replacements, one in 2014 and another in 2024. And then came my left lung—my dramatic overachiever—collapsing not once but twice, in 2020 and 2021. Nothing quite prepares you for the moment when your lung decides to bow out of its responsibilities. After the second collapse, I underwent a pleurodesis, a procedure that essentially glues the lung to where it belongs in hopes that it will behave itself going forward.

Adding to the collection, my right hemidiaphragm has permanently checked out, leaving me with breathing function that sometimes feels like a creative collaboration between my body and gravity. But I’ve learned to adapt. You’d be surprised how many things you can adjust to when you have no other choice.

Then in 2025, an MRI became the next chapter. Not because my doctors approved it, but because my insurance finally stopped guarding the gate and said, “Fine, go ahead.” I scheduled scans of both my spine and my brain, thinking it would just provide more data for the ever-growing medical binder that could double as a doorstop.

The spine results came back first: spinal stenosis. Not a jealous condition, not a big personality, not trying to upstage anything—just a narrowing of the spinal canal that puts pressure on nerves and explains why my right leg sometimes behaves like it’s working off incomplete instructions. Uncomfortable? Yes. Urgent? No. Another line in the medical file? Absolutely.

But the real plot twist hadn’t arrived yet.

A week after that result, I was in Cape Cod on vacation. I had one objective: relaxation. Not the performative kind, but the real “sit with a book and stare at the ocean like you’re in a pharmaceutical commercial” kind. The weather had other plans. A huge thunderstorm rolled in, complete with sideways rain and wind that made me wonder if the hotel should’ve come with seat belts. Still, it was cozy. I was finally exhaling. And then—ding.

MyChart.

Lighting up like a Christmas ornament in July.

Because I am, at my core, a creature of impulsive reacting, I opened it immediately. What could possibly go wrong?

There it was. A single word on the screen: tumor.

My stomach didn’t drop so much as it politely stepped aside to let panic through. The MRI had revealed a Vestibular Schwannoma, also known as an Acoustic Neuroma. A 3mm benign brain tumor perched on my eighth cranial nerve. Small, but strategic. The kind of annoying tenant that doesn’t break anything but definitely overstays its welcome.

If it grows, the surgical options are… intense. A procedure that could last up to 24 hours. Permanent hearing loss on one side. Potential balance issues that could make me walk like a newborn calf. Possible facial paralysis. None of these were on my vacation itinerary.

Naturally, because naming things makes them slightly less terrifying, I called it Fred. If something is going to live in my head rent-free, the least it can do is have a name.

The rest of the vacation involved deep, obsessive research—thank you, ChatGPT—into tumor growth rates, surgical success stories, hearing preservation, vestibular rehab, and what daily life looks like when your cranial nerve decides to host a visitor. This is not normal vacation behavior, I’m aware. Normal people eat ice cream and nap. I was learning how the vestibular system rewires itself after being disrupted.

By the time I met with the neurosurgeon, I was astonishingly calm. Knowledge does that—it smooths out the jagged edges of fear. The verdict was better than expected: no surgery for now. Fred gets to stay, but under surveillance. Like a toddler with crayons near a white couch. I’ll be doing regular MRIs and hearing tests to make sure Fred minds his manners.

So here’s the full inventory of my medical sitcom, summarized neatly:

Sarcoidosis since 2006.

Open lung biopsy.

TIA → hole in heart → heart failure → AICD.

Prognosed to live five years… eighteen years ago.

AICD replacements in 2014 and 2024.

Left lung collapsed twice → pleurodesis.

Right hemidiaphragm paralyzed.

MRI in 2025: spinal stenosis and Fred, the tiny brain tumor.

And yet—still here. Still cooking. Still writing. Still laughing. Still collecting diagnoses like they’re limited-edition trading cards.

I don’t say that with bitterness. I say it with the kind of reluctant pride that comes from surviving things you never thought you could. With sarcoidosis, heart failure, lung collapses, nerve issues, and now a brain tumor, life has been inventive. But so have I.

We adapt. We continue. We learn to breathe however our bodies allow. We learn to find humor in the absurdity of it all. We learn to tell our stories so others feel less alone.

So yes, my relaxing vacation came with a brain tumor. But it also came with perspective. I’ve beaten the odds before, and I’m not done yet.

If your body has ever surprised you in ways you never asked for, I hope this story reminds you that you’re not the only one flipping through plot twists. And if you’ve ever named your tumor, please know I genuinely want to hear what you called it. Share your own story below or subscribe so you never miss a post—because these twists are easier to navigate when we navigate them together.