Two years ago today, I underwent my sixth brain surgery at Upstate Medical University Hospital for a recurring benign tumor on my pituitary gland. A neurosurgery and ENT team removed the stubborn craniopharyngioma in a four-hour surgery on July 24, 2023.

I wrote a poem based on the postoperative medical report uploaded to the MyChart portal. I consider this a “reverse redacted poem.” Instead of blacking out words from my source text, I pulled words and phrases from the summary.

Neurosurgery Report

Date of Procedure: July 24, 2023

Endonasal endoscopic
transsphenoidal resection
of tumor
with nasal septal flap.

Preoperative diagnosis:
Recurrent craniopharyngioma
Postoperative: Same

Patient is a 53-year-old male
with a long history
of known craniopharyngioma.
Recurrence of craniopharyngioma
abutting the optic chiasm.
Not a great candidate
for repeat radiosurgery—
not enough margin
between the tumor
and the optic chiasm.

Counseled on the risks
and benefits of endonasal
transsphenoidal resection.
Elected to proceed
despite the risks.

Patient was intubated
by anesthesia.
Positioned supine
with the bed turned 90 degrees.

Endonasal approach
to the sphenoid sinus.
Once the sella was exposed
and the bone drilled down,
we began our resection.
A long handled arachnoid knife
was used to incise the dura.
The tumor was located
mainly on the right side.

We then encountered
thick scar tissue,
which was also incised
in cruciate fashion.

Once both layers of dura
had been opened,
there was immediate egress
of thin viscous brown fluid.
With the endoscope
we could see a
calcified appearing tumor
just in front of our field.

At this point, there was a brisk
CSF (cerebrospinal fluid) leak
from the chiasmatic cistern most likely.
Once we had attempted
to scrape along the floor
of the sella posteriorly and laterally
along the cavernous sinus,
we then turned our attention
to the tumor hanging in front of us.
We used laryngeal biopsy forceps
to coax the tumor out.

At this point, the tumor
seemed fairly stuck and plastered
to the arachnoid superiorly,
and thus we resected the
remaining tumor in front of us
in piecemeal fashion.

Given the brisk CFS leak,
our ENT colleagues then turned to
the right-sided nasal septal flap.
The ENT repaired the CSF leak.
Packing Surgical and NasoPore dressing
placed by the ENT surgeons.
This concluded our procedure.
The drapes were then removed.
The patient was returned to the stretcher.
He was successfully extubated
by anesthesia and transported
to PACU (Post Anesthesia Care Unit)
in stable condition.

Now, two years later, I am still living with a brain tumor. My last MRI in December 2024 revealed:

“The lesion measures 14 mm x 13 mm (TV by AP; Transverse by Anteroposterior), unchanged compared to prior scan dated 5/17/2024, allowing difference in technique and slice selection. The superior aspect of the mass abuts supraclinoid ICA, which remains patent. The right prechiasmatic optic nerve demonstrates mild atrophy but remains unchanged.”

My next MRI is scheduled for September. I suffer some mild headaches and have double vision when looking at a computer screen without my prism prescription glasses or gazing to the extreme right. But otherwise, the tumor is not affecting my health.

And I know what Dr. H. will say when he reads the MRI report in September. He’ll say, “Your scan looks good. It hasn’t grown. Let’s leave it alone and get another MRI in six months.”

This wait-and-see approach works well for me. But at the same time, I can never get the tumor out of my head—literally and figuratively.

And although Dr. H. is the surgeon and I respect his medical advice, his Pollyanna outlook ruffles me.

That’s because Dr. H. isn’t troubled by a repetition of sneezes that I fear could dislodge the tumor from its nook and cause it to invade healthy brain tissue. Dr. H. doesn’t worry that eating an entrée of fish and chips will add protein and fat to the tumor cells and make the mass larger. He’s not worried that the tumor will expand and start pressing against the optic nerve.

Craniopharyngiomas consistently grow back; that’s their nature. Having this dormant beast taking up real estate inside my skull feels like having Godzilla asleep in your cellar. You know he’ll wake up eventually. And then what? So how can you sit at the kitchen table and blithely enjoy a quiet dinner when you know the predator lurks beneath your feet?

At the same time, life and death could trade places on any given day. I’ve lost two cousins younger than sixty years old in the past six months (Derek DeCosty and Damon DeCosty), and I know tomorrow is not guaranteed. I am also very fortunate not to have a malignant tumor or a fatal disease.

And since I have no alternative, I live with the tumor as best as I can and try to forget it’s still there. Meanwhile, the tumor remains in the act of waiting—waiting to decide what it will become, waiting to find its path, waiting to strike. The neoplasm’s presence inside my head troubles me if I allow the image of the fluid-wrapped mass to provoke my worst fears. But for now, I try not to disturb the sleeping beast.