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
about my appearance,
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
and effacing the memory
of my existence.
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.
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.
Today marks the thirteenth anniversary of my father’s death. He passed away from lung cancer at age 64 on Aug. 6, 2007. It’s hard to believe so much time has passed since he left this world. Since then, my sister, Lisa, had a second child, a daughter named Elizabeth. I married in 2013 and my wife, Pamela, gave birth to our son, Colin, in 2016. Francis Sr. would have enjoyed getting to know his other grandchildren, as he did with my sister’s son, Paul, who was born in 2003.
Dad in the kitchen. Photo by Francis DiClemente.
Now that I’m almost 51, I realize how young my father was when he died. And while he still had a lot of life left in him, he was also lucky to even make it into adulthood.
I’ve blogged about my father in the past, and here are some highlights from his life.
He had been born with a hole in his heart, a ventricular septal defect. On June 12, 1959, when my dad 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 interrupted Dad’s high school years and he faced a long recovery; but he rebounded after the surgery, lifting weights to add strength and put on muscle.
Renowned heart surgeon C. Walton Lillehei. Photo credit: University of Minnesota.
He graduated high school from St. Aloysius Academy in Rome, New York, went to work at the city’s Sears Roebuck store and eventually grew to a height of about five-feet-five inches tall.
And Dad was proud to have been among the first batch of patients to survive open-heart surgery in the U.S. Whenever he told the story to someone, he would lift up his shirt and show off the long scar snaking down the middle of his chest.
As a kid, I loved visiting him at the Sears store after school, as we would descend a flight of stairs into a warehouse in the basement—filled with washers and dryers, lawnmowers, rolls of carpet and other merchandise. We would go into the break room, and he would buy me a soda from the glass vending machine—usually Nehi grape, root beer or Dr. Pepper—and then pour a cup of coffee for himself. We’d sit and talk at a little round table covered with the latest edition of the Utica Observer-Dispatch or the Rome Daily Sentinel newspaper.
From my father I learned about the importance of hard work and about trying to be a decent person. I often observed him saying “hello” to people, holding doors for them and offering help when needed—whether that meant giving someone a car battery jump or pushing cars stuck in the snow. And people would seek him out at the Sears store because he would find a way to give them deals to on washers, dryers, stoves and refrigerators.
When he was diagnosed with cancer, the doctor told him he could try chemotherapy, but it would only give him a slim chance of living slightly longer. He decided against the treatment, noting, “What’s the point?” And so in February of 2007, he accepted his fate, knowing he had only about six to nine months left to live.
As the months passed in the spring and early summer of 2007, he became weaker and weaker as the cancer ate away at his body.
Dad, side angle. Photo by Francis DiClemente.
He had always eschewed desserts and when offered them, would say, “No. I hate sweets.” But as his time on earth waned, he went all out when it came to food—eating Klondike bars, Little Debbie snacks, Hostess cupcakes and other junk food. His philosophy was “Why not?”
I recall one of our last conversations while we sat in the living room of my grandmother’s small ranch house in north Rome. Sunlight poured through a large bay window, past the partially opened silk curtains. Outside I could see a clear sky and trees burgeoning with leaves—a bright, saturated landscape of blue and green.
I sat in a corner of the room and he sat in a forest-green recliner covered with worn upholstery.
“What’s the name of the angel of death?” he asked me.
I was surprised by the question, and I said, “I think he’s just called the angel of death.”
“No, he has another name,” he said.
And after a few seconds it came to me. “The Grim Reaper.”
“That’s right, that’s it,” he said.
“Why do you want to know?” I asked. “Did you see him in a dream or something?”
“No, but I want to know his name when he comes.”
During this time period, I remember listening to the second movement of Franz Schubert’s Death and the Maiden, which is such a hypnotic piece of music that I often play it continuously on the “repeat” cycle.
My mother died at age 66 (also from lung cancer). Both of my parents had been smokers—which I am not—but in doing the math and being immunocompromised in the era of COVID-19, I feel like I am racing against my own impending expiration date. This gives me an added sense of urgency to create art and finish the projects I had started prior to the pandemic.
Yet in recalling my father’s life and his death, I focus on the merit of being a kind person and living a life of quiet decency and dignity. He passed these values to me and I try to carry them forward.
I wrote a few poems about my father since he died in 2007. And here are four of them, which all appear in my collection Dreaming of Lemon Trees: Selected Poems (Finishing Line Press, 2019).
My father was born
with a hole in his heart,
and although repaired,
nothing in his life
ever filled it up.
The defect remained,
despite the surgeon’s work—
a void, a place I could never touch.
The Galliano Club
From street-level sunlight to cavernous darkness,
then down a few steps and you enter The Galliano Club.
Cigar smoke wafts in the air above a cramped poker table.
Scoopy, Fat Pat and Jules are stationed there,
along with Dominic, who monitors the game,
pacing with fingers clasped behind his back.
A pool of red wine spilled on the glossy cherry wood bar,
matches the hue of blood splattered on the bathroom wall.
A cracked crucifix and an Italian flag hang above,
as luck is coaxed into the club with a roll of dice
and a sign of the cross.
Pepperoni and provolone are piled high for Tony’s boys,
who man the five phone lines
and scrawl point spreads on yellow legal pads.
Bocce balls collide as profanity whirls about …
and in between tosses, players brag about
cooking calamari (pronounced “calamad”).
Each Sunday during football season, after St. John’s noon Mass,
my father strolls across East Dominick Street and places his bets,
catapulting his hopes on the shoulder pads of
Bears, Bills, Packers and Giants.
His teams never cover and he’s grown accustomed to losing …
as everything in Rome, New York, exacts a toll,
paid in working class weariness and three feet of snow.
But once inside The Galliano, he feels right at home,
recalling his heritage, playing cards with his friends.
And here he’s no longer alone,
as all have stories of chronic defeat.
Blown parlays, slashed pensions and wives sleeping around,
constitute the cries of small-town men
who have long given up on their out-of-reach dreams.
For now, they savor the moment—
a winning over/under ticket, a sip of Sambuca
and Sunday afternoons shared in a place all their own.
Assume the death mask,
put on your final face
like those insolent characters
in that Twilight Zone episode—you know the one,
with their cruel faces contorted and fixed there for all time’s sake.
My father wore his death mask.
He kept it on even though I arrived after his passing
on that soft, warm August evening.
I’ll never forget the way he looked,
with his mouth agape, eyes vacant, cheeks sunken,
body withered and shriveled,
curled up in the fetal position on his soiled deathbed
in my grandmother’s sweltering death house.
I allowed myself to look at him for just a moment.
I then turned around and left him alone in his small bedroom.
I did this for my benefit, since I wanted to remember him
as a father and a man and not as a corpse in a locked-up state.
This is because the death mask grips its lonely victim
and sucks out the life and extinguishes the person.
I shuffled into the living room,
rejoining the Hospice nurse and the neighbors who came
across the street to comfort my grandmother and express remorse.
And Grandma, still acting as host despite the occasion and the heat,
asked me to make a pot of coffee for her guests.
The neighbors sat on the old, out-of-style couches and chairs
in my grandmother’s ranch home.
They conversed in hushed tones and sipped coffee
while we waited for the workers from the funeral parlor
to drive up to the house and wheel away my father.
St. Peter’s Cemetery
I extend a hand to touch an angel trapped in marble.
Its face is cool and damp, like the earth beneath the slab.
I pose a question to my deceased father,
Knowing the answer will elude me.
For his remains are not buried in this cemetery,
But instead rest on a shelf in my sister’s suburban Ohio house.
I am now recuperating from Gamma Knife radiosurgery, which was performed on Tuesday, Jan. 28 at Upstate University Hospital in Syracuse.
I experienced a complication and a greater degree of pain compared to the Gamma Knife procedure I had in 2012 (the goal then being to prevent my pituitary tumor from growing back).
When neurosurgeon Dr. W. and radiation oncologist Dr. M. inserted the four aluminum pins in my head—used to fasten the titanium head frame—they had difficulty at one of the sites, near where I had a portion of bone removed during my initial brain surgery in 1984.
Gamma Knife head frame. Photo by Pamela DiClemente.
The pin placement caused cerebral spinal fluid to leak, and I heard the sound of liquid dripping against the metallic structure, followed by rose-colored fluid splashing on my hands and on the blanket covering me. Nurse B. applied gauze to stanch the flow, but as the droplets fell from my right temple area, I conjured the image of Christ wearing the crown of thorns.
Christ Crowned with Thorns, 1550, by Maarten van Heemskerck (Frans Hals Museum).
After a mapping MRI was performed, Dr. W. and Dr. M. met in a treatment planning room to devise the course of action. The MRI report, which was sent to me electronically the next day, showed the tumor had from grown from my last MRI in December; it now measured 18.6 millimeters by 10.4 mm by 10.6 mm, compared to 13.3 by 8.6 by 9.9.
The terminology in the report amused me, and I imagined a spotlighted Beat poet or a rapper riffing on stage using the following phrases:
Residual peripheral enhancement
Inferior displacement of the optic chiasm
Deviation of infundibulum
After the planning meeting, Nurse B. came back and announced my treatment would last one hour. An older doctor or tech, stocky with salt and pepper hair and a beard, positioned me on the Gamma Knife machine. Then he fastened another head gear to the frame, and I heard cracking sounds and felt pressure in my skull. It made me think a mobster was sticking my head in a vice and turning the lever—to a much lesser degree—or using his meaty hands to squeeze my head like a grapefruit.
My body moved in and out of the tube for about an hour, and then Nurse B. and the tech came back into the room. I felt woozy transferring from the table to the wheelchair, and I feared the CSF leak may cause me to pass out. When I returned to the patient area, Dr. W. removed the frame and placed two small staples near the pin hole that leaked CSF.
A short time later they wrapped me in a head bandage, fed me some toast and discharged me.
My wife Pam took some photos of the ordeal, capturing the gory details. I don’t think I could look more gruesome if a Hollywood makeup artist made me up like Freddy Krueger. However, the more accurate cultural reference is Frankenstein. That’s how I looked and felt.
Take a look at the comparison of these two profile photos: one from the post-op period in 1985 and the other from the recent Gamma Knife day. I retained the shape of my boyhood head in adulthood, but now gray hair is sprinkled throughout.
Gamma Knife, side angle. Photo by Pamela DiClemente.
At home, the cranial pressure seemed elevated and my head ached, especially when moving from one position to another—most notably when leaning my head against the pillow to go to sleep.
I was given instructions to take Tylenol when needed and Dr. W. also prescribed an antibiotic.
I have a series of follow-up appointments scheduled in the next few weeks, and it’s too soon to tell whether the Gamma Knife procedure was successful in restoring normal eyesight (going from double vision back to single).
But while off a couple of days from work, while recovering and lying in bed, I thought about being sick and how when you’re in the moment—whether suffering from the flu or healing from a broken bone—you have the sense you will never be well again. You can’t remember a time when you didn’t feel bad.
Head bandage selfie.
It’s similar to living in a cold climate—like here in upstate New York—enduring harsh winter temperatures and heavy snow and never believing spring will come—until one day it does. And the next thing you know it’s a balmy summer day and the sun is shining, the air warm, ice cubes rattling in glasses of lemonade and lawn mowers buzzing in the neighborhood. And you think, I can’t remember what winter felt like.
Selfie of two small staples puncturing my forehead.
That’s the way I see this health situation. I consider it a short interlude of hardship to endure before I reclaim normalcy. At the same time, judging from my more than 35-year experience with a pernicious craniopharyngioma, I sense this is not the end. More trials will likely come, but my fear is diminished because I already know what to expect, as I can anticipate the movement of a tumor that is stubborn but not swift.
I had a recent follow-up appointment with my radiation oncologist to discuss the treatment plan for the regrowth of my craniopharyngioma (pituitary tumor).
Dr. M. said the team believes Gamma Knife radiosurgery offers the best option for delivering precise, targeted radiation—without affecting nearby cranial nerves—as opposed to hitting me with five separate radiation treatments.
Gamma Knife image. UT Southwestern Medical Center.
Nothing is scheduled yet, but I recall the last time I had Gamma Knife in 2012. I remember the surgeons drilling screws in the surface of my skull and attaching a helmet that looked like an old metal macaroni strainer to my head. The procedure was quick and I had no issues recovering from it. So here’s hoping for the best. I came up with a short poem to summarize the treatment plan.
In field of vision.
Or at least that’s
The surgeon’s plan.
I’ll believe it
When two becomes
Today marks a momentous anniversary in my personal history. As I’ve written about before, on this date, thirty-four years ago, surgeons at SUNY Upstate Medical Center (now Upstate University Hospital) in Syracuse, New York, removed a large craniopharyngioma that had enveloped my pituitary gland, leading to stunted growth and delayed puberty in my early teenage years.
The surgery left me with panhypopituitarism, a deficiency of all of the hormones the pituitary gland produces. The tumor returned twice during the intervening years and I would need follow-up surgeries to wipe away the remnants, along with Gamma Knife radiosurgery in 2012 to keep the neoplasm from coming back. So far, so good; my last MRI showed no traces of my benign nemesis.
My objective with this post is not to elicit sympathy by rehashing my medical past. Instead, I want to pause, reflect on the adversity I’ve faced and express gratitude that I’m still here. If you spend any time in a hospital you discover how quickly life can be snatched away. As I type these words, someone is dying and loved ones are mourning that person’s death. My story could have had a darker, alternate ending.
In looking back on my health crisis, I am thankful for the following.
My vision works—despite my need for progressive lenses and reading glasses. In waking up after the surgery, I could see, and this was not a given since craniopharyngiomas can cause visual disturbances because of their location near the optic nerve.
At Disney World in the winter of 1985; the scar from my surgery is visible and my hair has not grown completely back.
My brain function remains intact; the wedge of cauliflower in my head is capable of reasoning, performing calculations and doing what it’s intended to do (the majority of the time). And while my adult intelligence and decision-making ability could be open to interpretation, the surgery did not—as I had feared it would—disrupt my mental capacity or alter my cognitive function. When I woke up in my hospital bed, I knew my name, the date and the president of the United States (Ronald Reagan). And I remain thankful to this day because the me I knew as me had not disappeared after the surgeons cut open my skull.
Boy to Man
Although my youthful appearance lingered into my late twenties (a direct result of the delayed puberty caused by the tumor), I am grateful I finally matured with the assistance of injections of synthetic growth hormone and testosterone, which spurred growth and the development of secondary sex characteristics. I have shed the outer skin of a boy, revealing the man I knew resided underneath.
My wife Pam and son Colin.
My health has diminished with the subsequent diagnoses of osteoporosis and rheumatoid arthritis, and panhypopituitarism requires constant and vigilant management, e.g. making sure I take the numerous drugs that sustain my life. Even so, today I live a pretty normal existence. The surgery did not provoke a desire to engage in thrill seeking activities. I don’t think you can go full throttle all the time—“living each day as if it’s your last.”
I am content to wake up, blink my eyes and focus on my surroundings, climb out of bed and face each new day with the knowledge of how truly lucky I am.
Hopper-esque sunlight pours through the fifth-floor windows of an exam room in a medical office building in Syracuse. The light clings to the white walls on this Tuesday morning as I await the appearance of my neurosurgeon to give me the results of the MRI of the brain I had done earlier in the morning.
I notice the stenciling of letters on the wall directly across from me. The uplifting slogan reads: “Life isn’t about waiting for the storm to pass. It’s about learning to Dance in the Rain.” The words hold little meaning to me on this bright sunny day with highs expected in the eighties.
Words on a wall
Dr. H. comes in a short time later; I rise from the chair, greet him and shake his hand. He is bald, thin, wears brown-rimmed glasses and is chewing gum. He takes a seat across from me and says, “Everything on your scan—the one you just had—is perfect. No change from a year ago.”
I ask him about residual scar tissue from the Gamma Knife surgery he performed in 2012 to remove remnants of a craniopharyngioma, a benign tumor in the sellar region of the brain, near the pituitary gland. The neoplasm was initially removed at Upstate in 1984, but it grew back and I needed follow-up surgeries in 1988 and in 2011. But it has not returned since the Gamma Knife procedure four years ago.
“It’s just scar tissue,” Dr. H. says. “Everything is clear. So we’ll just plan another MRI in a year. We’ll get you in before the winter comes.”
And so I can proclaim that I am tumor-free for another year. We have kept the craniopharyngioma at bay. And although I push the fear of its return to the outskirts of my mind, I know the tumor could sneak up again at any time. But on this morning I am thankful for the reprieve. It means no follow-up scans, no biopsies, no inpatient admission and no additional surgeries. I am grateful that I don’t need to wait for the storm to pass or learn to dance in the rain—at least for now.