Tag Archives: tumor

41st Tumorversary

Today marks the forty-first anniversary of my first brain surgery. As I’ve written about before, on Dec. 12, 1984, when I was fifteen years old and a sophomore in high school, surgeons at SUNY Upstate Medical Center (now named Upstate University Hospital) in Syracuse, New York, removed a large craniopharyngioma that had engulfed my pituitary gland, leading to stunted growth and delayed puberty. Since then, I’ve had four additional surgeries and two Gamma Knife radiosurgery treatments at Upstate.

Posing with my parents prior to my surgery in 1984.

Prior to the initial surgery, in the fall of 1984, a scan of my head had revealed a cloudy mass in the sella region at the base of the skull, and the results of a follow-up CT scan with radiation contrast came a few weeks later.

I received the news about the brain tumor diagnosis from my father when he picked me up from wrestling practice on a cold November night. This essay describes that encounter.

Craniopharyngioma

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After I put on my black wool pea coat, pulled a knit hat down around my ears, and slung my book bag over my shoulders, I pushed open the back door of the gym and walked outside to meet my father, who had parked behind the high school.

The cold air hit my face and stung my gloveless hands as I strode toward the car; a floodlight cast a large net of bright, white light on the pavement. Dad drove up, and I got in.

He left the car idling, and as I slid into the passenger seat and adjusted myself, he leaned over and kissed me on the cheek, his tan winter coat brushing against the steering wheel. I felt a trace of his beard stubble against my skin, and I could smell a faint odor of Aqua Velva or Brut combined with cigarette smoke. The heater hummed, and he lowered the blast of air and turned and looked at me. I wondered why we weren’t moving yet. He wasn’t crying, but he appeared on the verge of spilling emotions.

“What’s the matter, Dad?” I asked.

“Upstate called your mother today,” he said. He switched on the overhead light, reached into his jacket pocket, and pulled out a torn piece of paper. “Here,” he said, handing me the slip of paper, “this is what they think you have. I wrote it down, but I don’t think I spelled it right.”

In a slashing style in faint, blue ink, my father had scribbled a misspelling of the word craniopharyngioma. His voice cracked as he said, “It’s cranio-phah-reng . . . something like that . . . oh, I don’t know. It’s some kind of brain tumor.”

I looked at the paper as my father let out a sigh. He shook his head and said, “I prayed to God when you were born that this wouldn’t happen to you, that you wouldn’t have to go through the same thing I did.” His words referred to his health crisis as a teenager, one that caused small stature and delayed puberty and led to ridicule by his classmates.

Francis DiClemente Sr. was born with a hole in his heart, a ventricular septal defect. On June 12, 1959, when he was sixteen years old, pioneering cardiac surgeon C. Walton Lillehei performed open-heart surgery on him at the University of Minnesota Hospital, successfully repairing the defect.

The heart problem disrupted Dad’s high school years, and he faced a long recovery; but he rebounded after the surgery, lifting weights to become stronger and adding muscle to his thin frame. He grew to his final adult height, graduated high school from St. Aloysius Academy in Rome, and went to work at the city’s Sears Roebuck store.

After sharing the information with me, he pressed his lips together and shook his head again, and he seemed locked in position in the driver’s seat, unable to contend with the news, incapable of going through the motions of driving away. We clenched hands, and I said, “It’s OK, Dad. Don’t worry. But what do we do now? What’s next?”

“You have to go back there for more tests. You may need surgery.”

“All right,” I said. “It’s OK.”

“I hope so,” he said. “All we can do is pray.”

He switched off the overhead light, put the car in drive, and drove out of the parking lot. We grew silent as we passed the naked trees lining Pine Street in our city of Rome, New York.. We crossed the intersection at James Street and made our way toward Black River Boulevard.

While my father was anxious and crestfallen, I felt elated as I gripped my book bag in the passenger seat. The CT scan with contrast had confirmed my suspicions, indicating a grave medical condition was responsible for my growth failure at age fifteen, offering a reason why my body had not changed, why I had not progressed through puberty, and why I remained so different from the other boys my age. I still considered myself a physical anomaly, but the tumor proved it wasn’t my fault.

I looked down at the piece of paper again and studied the word. Craniopharyngioma. I tried to sound it out in my head while my dad steered the vehicle, and I thought the word would twirl off my tongue like poetry if I rolled down the window and yelled it. Craniopharyngioma. Cranio-Phar-Ryng-Ee-Oh-Mah. It reminded me of onomatopoeia, which I had learned about in my tenth-grade English class.

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And here are two related poems:

Case History

Stricken with pituitary insufficiency,
I felt my way through
a stage of delayed puberty.
When adolescence took hold for other kids,
I remained like a boy wrapped in toddler’s clothes.

My face looks older now,
and my body has grown.
But I could not escape
the endocrine impact of that cranial intrusion.
For even though benign,
the tissue overtook me,
and in effect, the tumor
scarred my life and altered my future.

Craniopharyngioma (Youthful Diary Entry)

Craniopharyngioma gave me
an excuse for being unattractive.
I had a problem inside my head.
It wasn’t my fault
I stood four foot eight inches tall
and looked like I was
twelve years old instead of eighteen—
and then nineteen
instead of twenty-four.
I couldn’t be blamed for
my sans-testosterone body
straddling the line
between male and female.

The brain tumor
spurred questions
about my appearance,
aroused ridicule,
and provoked sympathy.
I heard voices whispering:
“Guess how old that guy is?”
And, “Is that a dude or a chick?”

And while I waited for my
body to mature, to fall in line,
and to achieve normal progression,
I remember wishing the surgeons
had left the scalpel
inside my skull
before they closed me up,
knitting the stitches
from ear to ear.

I prayed the scalpel
would twist and twirl
while I slept at night—
carving my brain
like a jack-o’-lantern—
splitting the left and right
hemispheres,
and effacing the memory
of my existence.

 

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Dormant But Not Dead

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.

Upstate Medical University Hospital (Photo by Francis DiClemente)

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.

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New Year’s Reflections

New Year’s Eve 2023. Time to rewind and then hit reset.

I’m grateful for getting another 365 tokens to drop into the slot machine. Another 365 scratch-off lottery tickets to play. Another 365 chances to be better than the day before.

Card from David’s Refuge.

I’m closing out the year filled with both anxiety and excitement.

By all accounts, 2023 was a pretty good year for me. I made some strides as a writer and filmmaker.

I earned an Emmy (my second) as part of a production team at Syracuse University.

Photo by Shane Johnson.

I published a full-length poetry collection, The Truth I Must Invent. I published a couple of short stories and a short play in some literary magazines.

The Truth I Must Invent book cover.

I completed two short documentary films, Ralph Rotella: The Sole of Syracuse, which premiered at the Syracuse International Film Festival and was an official entry at the Culver City Film Festival, and The World Series of Bocce: A Celebration of Sport, Family and Community, which is awaiting festival decisions.

World Series of Bocce title screenshot.

I completed a feature screenplay and a full-length coming-of-age memoir (a ten-year project!). But despite numerous revisions, I still don’t know if the words on the page are memorable or whether either project will come to fruition (e.g., production or publication).

So those are my accomplishments in 2023. Big whoop, right? Yada-yada-yada. Blah-blah-blah.

Here are the standout moments during the last calendar year.

In June, my Aunt Teresa, a.k.a. Sister Carmella DeCosty, visited Central New York to attend the funeral of her brother, my Uncle Fee, in Rome, New York. She stayed with us in Syracuse, and we had a lot of fun catching up.

Pam and Aunt T.

A flashback of Aunt T. during a holiday at my maternal grandparents’ house. I think that’s me on her lap, with my mom in red and my Aunt Pat in black.

My seven-year-old son, Colin, who is autistic, enjoyed trick-or-treating for the first time this Halloween. I think he actually “got it” this year.

Colin getting ready to trick-or-treat.

I spent Thanksgiving with my brother Dirk and his family in Rome and my sister Lisa and her family from Ohio. The best part—no snow!

For the holiday season, my wife Pam hung a stocking for Colin in mid-December and gave him little presents every day—stuff like Kinder Joy eggs and Play-Doh. He seemed to understand the concept of Santa Claus, and he was excited to open presents on Christmas morning.

Pam and Colin.

Pam went back to school this fall, enrolling in an occupational therapy assistant program at Bryant & Stratton College. The workload was arduous, but Pam scored high grades during her first semester.

But the most significant event of 2023—I survived my sixth brain surgery with my brain function and memory intact. In July, a team of neurosurgeons and ENT surgeons at Upstate performed a transsphenoidal (through the nose) surgery to remove parts of a craniopharyngioma that had been growing near the pituitary region, affecting my vision. I had a cerebral spinal fluid leak during surgery, but the ENT surgeon repaired it, and the patch is holding nearly six months later.

I wish all good things for you in 2024. A partial list includes: Love, family, faith (whatever you choose that to be), employment, health, health insurance, kind co-workers, transportation, clean drinking water, food, a home, a roof, four walls, a furnace, indoor plumbing, electricity, clean air, and trees. Lots of trees. I am supremely thankful for all of the above.

I leave you with a couple of New Year’s-themed poems. It’s amazing what you can find when you do a word search on the Poetry Foundation website.

January by Weldon Kees

Morning: blue, cold, and still.
Eyes that have stared too long
Stare at the wedge of light
At the end of the frozen room
Where snow on the windowsill,
Packed and cold as a life,
Winters the sense of wrong.

Poetry magazine, March 1951.

New Year’s Eve by Maurice Lesemann

The towers give tongue, the wailing horns grow loud;
And this odd planet where we wake and are
Has once again, amid a tumult of cloud,
Swung safely and serenely round its star.

Poetry magazine, April 1932.

 

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39 Years Later

I’ve written about this in many entries over the years, but I can’t let the Dec. 12th date pass without mentioning my gratitude for still being here. Today marks my “tumorversary.” Thirty-nine years ago today, on Dec. 12, 1984, surgeons at SUNY Upstate Medical Center in Syracuse, New York (now named Upstate University Hospital), removed a large craniopharyngioma that had engulfed my pituitary gland, leading to stunted growth and delayed puberty in my teenage years, as well as lifelong hypopituitarism.

In my last blog post, I wrote about my follow-up appointment with my neurosurgeon after my summer operation—my sixth brain surgery. But who’s counting?

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Six-Month Reprieve

I want to share some positive news. I had my follow-up appointment with my neurosurgeon yesterday. Fear gripped me heading into the exam room because the radiologist’s report detailing my latest MRI included this troubling language: “Unchanged heterogeneously enhancing prominence in the right anterolateral suprasellar area, causing mass effect with deformity and right optic tract and proximal portion of the right optic nerve.”

But Dr. H., who is always sanguine, stepped into the room, shook my hand, and sat down, adjusting his glasses and mask, then quickly put me at ease. “We think we got about seventy to eighty percent of the tumor,” he said. He explained the rest—what the MRI report referred to on the right side—was the membrane of the tumor, similar to what’s left over after a balloon bursts. He said he expects the membrane to shrink and form scar tissue.

Although my vision will never go back to the way it was prior to the swelling of the tumor in recent years, I felt relieved when Dr. H. said we can resume a wait-and-see approach, meaning I need no other treatment besides another MRI in six months.

That reassurance was the best present I’ll receive during this Christmas season. Clean, safe, and grateful are the words that hovered in my head when I left the office yesterday. I believe in the power of prayer, especially the petitions made by Aunt Teresa, a Roman Catholic nun in Florida who uses the term “storming heaven” when referring to her supplications.

I am thankful to have endured my latest medical ordeal, but I also know tomorrow could bring a whole new heap of trouble. That’s why I am trying to honor my good fortune by living in the present each day. Of course, this is impossible to do consistently amid the pressures of work and family life.

But I’m trying.

Here are a couple of photos I snapped recently—two visual gifts the universe offered because I was willing to pay attention in the moment.

Snow on Branches 2023. Photo by Francis DiClemente.

Rain Speckled Night. Photo by Francis DiClemente.

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Eight Weeks Later

Today marks two months since my transsphenoidal brain surgery to remove tumor regrowth. I’m happy to report I’m getting stronger every day. I’d say I’m about 80 percent back to normal. I have returned to work and jumped back into the maelstrom of marketing projects, deadlines, and responsibilities.

Eight weeks post-surgery.

My nose still throbs, and I needed a round of antibiotics for a recent infection of the cartilage. I had a follow-up appointment with the ENT surgeon; he mentioned it will take about three to six months for me to be fully healed—not surprising considering they rolled part of my septum and used it as a nasoseptal flap to patch where the cerebral spinal fluid leaked during surgery. But the good news—the seal at the back near the opening of the sphenoid sinus is holding.

My nemesis: the twice-daily nasal rinse bottle.

I still need to do twice-daily saline rinses and take Tylenol for the pain. I lifted “weights” yesterday for the first time in eight weeks—don’t laugh at my little five-pound dumbbells. I hope to resume heaving fifteen-pounders in a couple of weeks.

Hitting the “weights.”

Two songs have been repeating in my head during my recovery.

Elton John’s “I’m Still Standing.”

And Steve Winwood’s “Back in the High Life Again.”

And here’s a photo from a Walgreens: the gift of a beautiful sight revealed to me on a mundane Friday night.

Sublime sunset from a parking lot. Photo by Francis DiClemente.

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Tumor Talk

I am undergoing another brain surgery on Monday morning. This marks the fourth time since my craniopharyngioma (benign brain tumor on the pituitary gland) first appeared when I was fifteen years old.

Image by the National Cancer Institute.

My last blast of Gamma Knife radiation in 2020 kept the tumor away, but subsequent regrowth began affecting my vision in the past two years. Another round of radiation could not be performed because the tumor sits only a millimeter away from the optic nerve. My radiation oncologist gave me the grim news that radiation presented a twenty-five percent risk of blindness.

So a neurosurgeon and an ears, nose, and throat surgeon at Upstate will team up for a transsphenoidal approach—meaning they would go through the nose to access the tumor. I had the same surgery in 2011, followed by a rough recovery where I stayed locked in my room for about a month, suffering from excruciating headaches. I have added concerns now because in 2011 I was on my own; now I have my wife and son to think about.

Image by the National Cancer Institute.

Anyway, I want to present a piece of experimental writing inspired by my tumor. I think this falls under the essay category, but it could also be considered fiction.

Tumor Talk: A Conversation with My Craniopharyngioma

“I’m back, baby!”

I heard those words in my head after my radiation oncologist discussed the results of my latest MRI. Dr. L. said my craniopharyngioma—a benign, slow-growth tumor at the base of the brain near the pituitary gland—had grown over the last two years, causing my recent double vision.

Dr. L. said the proximity of the neoplasm to the optic nerve and blood vessels meant radiation was no longer an option. I would need surgery.

“You must be pretty proud of yourself, Fred,” I said to my tumor friend resting inside my head.

“Oh, come on, man, don’t be like that,” Fred said. “You know this was inevitable. Us craniopharyngiomas are like the cockroaches of the tumor world. You know no matter what you do, we always come back. You think that weak-ass radiation was gonna work on me?”

Yes, my tumor has a name. Since he’s been residing inside me for so long, I figured we should at least be on a first-name basis.

And Fred was right. There’s no denying his Terminator instincts for coming back. He’s like Buster Keaton in The General. He keeps barreling down the tracks no matter what you do to him.

Fred first appeared in 1984 as a large tumor engulfing my pituitary gland. His removal led to hypopituitarism and diabetes insipidus (a disease affecting water and sodium balance).

Despite surgeries in 1984, 1988, and 2011, plus two blasts of Gamma Knife radiation, Fred continued to aggregate the tumor vestiges, scooping up the fragments and wrangling them into a well-formed regiment. I gotta give him credit for its spunk and resiliency.

But after leaving the medical office and waiting at the bus stop, I wanted to set some ground rules with Fred, to see if I could talk him down or at least minimize his impact.

“Why are you doing this to me again? Life has been pretty stable with my family. Why do you have to make trouble for us now?”

“Come on, man, get real. Don’t give me those bullshit questions. Why anything? Why do you breathe or drink water? Why does a horse gallop, a deer prance, a cat meow, or a goat bleat? Do I need to go on? I’m a fucking brain tumor.”

“So what if you’re a tumor? Can’t you control yourself? Can’t you stop growing?”

“Now you just sound naïve. I can’t be something other than what I am. And I have a clear objective. As a tumor, my job is to expand and invade. That’s it. That’s why I’m here on this planet.”

What could I say? I couldn’t offer any retort.

“Look, don’t be so glum. You’re in good hands with your doctors, and our history shows we both come out alive.”

“Yeah, but I wish you’d agree to leave.”

“Well if it’s any consolation, I do like where I live. You’re a good host. Don’t get me wrong, I’d prefer to be inside the head of some brilliant mathematician or a swimsuit model reclining on a beach. No offense. Look, you’re not a bad guy. But let’s not get carried away. You’re no fucking Einstein or Dave Chappelle. And frankly, I get a little bored with your prosaic thoughts.”

“Tell me how you really feel.”

“Oh come on, man. I’m just busting your balls a little bit, trying to cheer you up. Which reminds me—I thought of a theme song for our relationship. Come on, sing it with me:

“In your head, in your head,
Zombie, zombie, zombie-ie-ie-ie …”

“Very funny.”

“Come on, man, don’t be like that. We need to learn to live together. Look, I haven’t caused irreparable damage. Your brain functions, memory, and language processing are all intact.”

“I suppose I should thank you for that. But with any luck, the neurosurgeon will go up through the nose and pluck you out.”

“Oh, why so adversarial? We’re just talking here.”

“You have your objective. And I have mine. You’re a squatter. A nuisance tenant who needs to be evicted.”

“Yeah, good luck. I adhere to things. You can’t just kick me out. I stick around. Been doing it for more than thirty-five years.

“Yes, you’re one tough foe.”

“But why do you have to think of me like that?”

“What do you mean?”

“Maybe I’m more friend than foe?”

“I don’t buy it.”

“Just hear me out. You wouldn’t be the man you are today if it weren’t for me.”

“How do you figure?”

“You’re pretty driven, ambitious, and disciplined, right?”

“Yeah, I suppose.”

“Well, if it weren’t for me, you wouldn’t have had to overcome those endocrine challenges—being the shortest guy in your class. I may have stunted your growth, but I gave you determination—a fire in the belly.”

“You know, I have to admit, I think you have a point. From the moment you came along, I felt like you were a ticking time bomb inside my head, and I had to strive to achieve something before you exploded and shattered my skull.”

“But, lucky for you, I’m not a bomb. And I’m not vicious, pernicious fucking glioblastoma. I’m just an aggravating nuisance, a little hangnail or a sliver under the skin. Think of me as a dented fender or a toilet that keeps running.”

“Well, I guess I should say, ‘thank you’ for that.”

“Don’t mention it.”

“Can we at least come to some agreement? Can you just stop growing and stay put for a while, until I have this surgery?”

“I don’t have that kind of control, kid. You give me too much credit. I don’t know where I’m going. I just keep moving.”

“Well listen, after Dr. H. does his transsphenoidal resection work, I’ll let you come back slowly, over the next ten years.”

“I hate to break it to you, but I don’t need your permission to inhabit some space inside your head. And let’s face it—we’re gonna be together for a long, long time. We’ll be two old, shriveled geezers playing shuffleboard in Clearwater. So let’s stay friends.”

I laughed. “I guess you’re right. I don’t know what else to say. See you later, Fred.”

“See you in the operating room, kid.”

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Tumorversary 2022

Today marks the thirty-eighth anniversary of my first brain surgery. As I’ve written about before, on Dec. 12, 1984, surgeons at SUNY Upstate Medical Center (now named Upstate University Hospital) in Syracuse, New York, removed a large craniopharyngioma that had engulfed my pituitary gland, leading to stunted growth and delayed puberty in my teenage years, as well as lifelong hypopituitarism.

The tumor has returned over the years, requiring follow-up surgeries and Gamma Knife radiation. It’s something I’ve learned to live with, and I’m grateful my condition is manageable.

Here’s a poem reminiscent of that initial post-surgical time period:

Craniopharyngioma (Youthful Diary Entry)

Craniopharyngioma gave me
an excuse for being unattractive.
I had a problem inside my head.
It wasn’t my fault
I stood four foot eight inches tall
and looked like I was
twelve years old instead of eighteen—
and then nineteen
instead of twenty-four.
I couldn’t be blamed for
my sans testosterone body
straddling the line
between male and female.

The brain tumor
spurred questions
about my appearance,
aroused ridicule
and provoked sympathy.
I heard voices whispering:
“Guess how old that guy is?”
And, “Is that a dude or a chick?”

And while I waited for my
body to mature, to fall in line
and to achieve normal progression,
I remember wishing the surgeons
had left the scalpel
inside my skull
before they closed me up,
knitting the stitches
from ear to ear.

I prayed the scalpel
would twist and twirl
while I slept at night—
carving my brain
like a jack-o’-lantern—
splitting the left and right
hemispheres,
and effacing the memory
of my existence.

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Attitude of Gratitude

This month marks the 25th anniversary of an incident that forever shaped my outlook on life. And it seems fitting to repost this essay in the middle of Holy Week, a time for reflection, faith, and gratitude for Christ’s sacrifice on the cross. The piece was previously published on Medium. I added some photos I took while residing in Toledo, Ohio, during the late 1990s.

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My arms and legs stopped working on a gray April day in 1997. I was lying on the carpet in the hallway of my sister’s second-floor condominium in Toledo, Ohio, staring up at the eggshell-colored ceiling, unable to move.

I was living with my sister at the time and working at a news/talk radio station in the city. On that Saturday I was alone in the house, as my sister, Lisa, had left to run errands and attend a couple of social events. I had stayed behind, watching an early season Detroit Tigers game on television and doing some laundry.

Over the course of the day I became weaker and weaker; I fell several times but was able to get on my feet again — until late in the afternoon when I could no longer move my arms or legs.

St. Patrick’s Cathedral in Toledo, Ohio. Photo by Francis DiClemente.

I felt relieved when I heard my sister’s keys jangling as she opened the door. She was startled when she walked into the kitchen and saw me sprawled out in the hallway. “What are you doing on the floor?” she asked.

After I explained what had happened, she picked up the phone to dial 911. I asked her not to call, to wait and see if I could recover on my own. “No, you can’t move,” she said.

“I’m calling the ambulance.”

Paramedics came and took me away, carrying the stretcher down the stairs to the parking lot. They measured my vitals and asked me questions about my medical history. I should have been frightened by my unexplained weakness, but oddly I wasn’t. I knew I hadn’t suffered a head or spinal cord injury; I also hadn’t lost consciousness. I suspected a chemical imbalance had caused my paralysis.

The ambulance pulled out of the condo parking lot and sped down the road, and I remember looking out the back window and watching dark tree limbs and streetlights pass by as we made our way to the hospital.

Trees in Toledo. Photo by Francis DiClemente.

When we arrived, a male ER doctor with dark hair, a mustache and a swarthy complexion examined me. An EKG and head CT both came back normal. I still couldn’t stand up, and the doctor kept looking at me and rubbing his chin, appearing flummoxed by my condition. But he soon discovered the cause, as blood tests revealed extremely low potassium levels. The doctor order an IV potassium drip, and my arms and legs rebounded a short time later. I was still weak but could now move my limbs. I lifted my legs from the bed and raised my arms overhead, comforted that my limbs no longer felt like dead weight.

I was admitted to the hospital, as the doctors sought to determine the underlying condition that had caused the potassium levels to drop; they also wanted to rule out any neuromuscular disorders.

The following day a male doctor with a beard performed a test using electrodes to measure electrical activity in my muscles. My endocrinologist also visited me in the hospital and did some medical research on my condition. He later diagnosed me with hypokalemic periodic paralysis, a genetic disorder that he said was unrelated to my hypopituitarism, which I had been diagnosed with at age 15 after having surgery to remove a pituitary tumor.

I stayed in the hospital for about a week while the staff continued to monitor my heart rhythm and electrolyte levels. A physical therapist also worked with me to do some exercises to rebuild muscle strength.

I was discharged on a bright spring day. Stepping outside and heading to my sister’s car parked in front of the hospital, my legs did not fold under me; I realized they could now support my bodyweight. And I rejoiced in being able to walk forward, to execute the simple motion of putting one foot in front of the other. No one had to carry me to the car.

And I took stock of my life in that instant and counted my blessings. My family cared about me, I had a place to live and a full-time job with health coverage (although my radio salary was low at the time).

More importantly, I had survived my medical ordeal with just a couple of instructions to follow — to modify my diet and take daily potassium supplements to compensate for my condition. I did not need surgery, and I was grateful that the outcome had not been a more serious disease like multiple sclerosis or ALS (Lou Gehrig’s disease).

This theme has echoed throughout my life. I have faced numerous health crises, and after each one I have reevaluated and recalibrated my priorities.

Since my initial brain tumor was excised at age 15, I’ve had two follow-up surgeries to remove remnants, along with two rounds of Gamma Knife radiosurgery with a goal of preventing regrowth. Today I am not tumor free — the craniopharyngioma still resides in my head, affecting my vision. But for now, the doctors are observing the tumor and have decided no surgery or radiation is needed.

In waking up from my both my second surgery in 1988 and my third in 2011, I remember the dim glow of fluorescent lights overhead and the sound of beeping machines in the surgical intensive care units. In both cases, in the instant when I came back to consciousness, my head felt woozy and everything appeared fuzzy; it was as if gobs of Vaseline had been smeared across both eyelids and I couldn’t see clearly.

A nurse or doctor would stand over me and ask me a series of questions. “What’s your name?” “Do you know where you are?” “Can you tell me the date?” “Who is the President of the United States?”

And in being able to respond verbally and answer the questions correctly, I would realize I had survived the surgery with my health seemingly intact; my brain worked and I could speak and form sentences. And in my post-surgical haze I would feel an overwhelming sense of gratitude.

Toledo warehouse. Photo by Francis DiClemente.

But here’s the problem. Each time after leaving the hospital, I could not sustain that feeling of gratitude beyond a few days. I would get caught up again in the daily struggles of life, and my “attitude of gratitude” would slip away.

I am now aware of this flaw in me. I recognize that in the pursuit of a better job, a bigger house, a newer car and a richer bank account, I forget to be thankful for the essentials I’ve been given — oxygen to breathe, clean drinking water, food in the fridge, safe shelter, a loving family and the ability to walk, talk, and think. I forget how easily these things can be taken away.

I need to preserve in my mind the freeing power of gratitude, because gratitude puts the focus on being thankful for what you already have, and sharing some of it, as opposed to seeking what you lack.

I need to stop looking around and asking myself, “What else?” or “What more?” Instead, I must try to be content with my life as it is, at this very moment, and be able to say, “This is plenty. This is more than enough.”

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Brain Tumor Surgery Anniversary

Today marks the thirty-sixth anniversary of my first brain surgery. As I’ve written about before, on Dec. 12, 1984, surgeons at SUNY Upstate Medical Center (now named Upstate University Hospital) in Syracuse, New York, removed a large craniopharyngioma that had engulfed my pituitary gland, leading to stunted growth and delayed puberty in my early teenage years.

Posing with my parents prior to my surgery in 1984.

Prior to the surgery, in the fall of 1984, a scan of my head had revealed a cloudy mass in the sella region at the base of the skull, and the results of a follow-up CT scan with radiation contrast came a few weeks later.

Craniopharyngioma

I received the news about the brain tumor diagnosis from my father, after he picked me up from wrestling practice on a cold November night. This poem describes that encounter.

Brain Tumor Diagnosis

Dad put the car in park and let it idle,
and as I slid into the seat and adjusted myself,
he leaned over and kissed me on the cheek,
his tan winter coat brushing against the steering wheel.
I felt a trace of his razor stubble against my skin,
and I could smell a faint odor of Aqua Velva or Brut,
combined with cigarette smoke.
The heater hummed, and he lowered the blast of air
and turned and looked at me.
I wondered why we weren’t moving yet.
He wasn’t crying,
but he appeared on the verge of spilling emotions.

“What’s the matter Dad?” I asked.
“The hospital called your mother today,” he said.
He switched on the overhead light,
reached into his jacket pocket,
and pulled out a torn piece of paper.
“Here,” he said, handing me the slip of paper,
“this is what they think you have.
I wrote it down, but I don’t know if I spelled it right.”
Scribbled in faint blue ink was the word “craniopharyngioma,”
although my father had misspelled it.
His voice cracked a bit as he said, “It’s cranio-phah-reng . . .
something like that . . . I don’t know, it’s some kind of brain tumor.”

I looked at the paper and felt a wave of satisfaction
as my father let out a sigh.
He seemed locked into position in the driver’s seat,
unable to shake off the news and go through the motions
of putting the car in gear and driving away.
I think we may have clutched hands,
and I said, “It’s OK Dad. Don’t worry.
But what do we do now? What’s next?”
“You have to back there for more tests. You may need surgery.”
“All right,” I said.
He switched off the overhead light,
and he drove out of the parking lot.
We grew silent inside the car
as we passed the naked trees lining Pine Street
in our city of Rome, New York.

While my father was crestfallen,
I remember being elated as I sat in the passenger seat.
The CT scan with contrast had given me a medical diagnosis—
a reason for my growth failure at age fifteen.
It explained why my body had not changed,
why I never progressed through puberty,
and why I was so different from the other boys my age.
I still considered myself a physical anomaly,
but the tumor proved it wasn’t my fault.

That knowledge gave me some satisfaction,
and I couldn’t help feeling a stirring of excitement.
I looked down at the piece of paper again
and studied the word—“craniopharyngioma.”
I tried to sound it out in my head while my dad drove on,
and I thought the word
would roll off my tongue like poetry if I said it out loud.
Craniopharyngioma. Cranio-Phar-Ryng-Ee-Oh-Mah . . .
sort of like onomatopoeia.

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