Tag Archives: health

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.

Standard

Father’s Day Poems

For Father’s Day, I thought I would post some pieces honoring my father, the late Francis DiClemente Sr., and my stepfather, the late William Ruane.

The first poem is a fictitious, but the father character was inspired by my dad.

Father’s Day Forgotten

Daddy and Christi parted ways at a bus depot
In the early morning hours.
No big scene, just a kiss on the cheek,
Then she turned around and was gone for good—
Hopping aboard the Trailways bus headed westbound for Chicago.
And she never looked back.

Daddy went home to his beer bottle and sofa seat,
And he drew the living room curtains on the rest of the world,
Letting those four eggshell walls close in and swallow him up,
Wasting away in three empty rooms and a bath.

And the memories can’t replace his lost daughter and wife.
So he tries not to remember his mistakes
Or how he drove them away.
Instead he recalls Halloween pumpkins glowing on the front porch,
Training wheels moving along the uneven sidewalk,
Little hands reaching for bigger ones in the park,
And serving Saltine crackers and milk
To chase away the goblins that haunted
Dreams in the middle of the night.

Now Christi has a life of her own,
And she lets the answering machine catch
Daddy’s Sunday afternoon phone call.
She never picks up and rarely calls back.
So Daddy returns to the green couch
Pockmarked with cigarette burns.
He closes his eyes, opens the door to his memory vault
And watches the pictures play in slow-motion.
He rewinds again and again without noticing the film has faded
And the little girl has stepped out of the frame.

Dad in the kitchen. Photo by Francis DiClemente.

Open Heart

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.

Dad, side angle. Photo by Francis DiClemente.

Death Mask

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 never called Bill “Dad,” but I considered him a second father instead of a stepfather. He played an instrumental role in my adult formation. Here are two works about him.

Weekend in Albany

Night—diminished faith now fights for restoration,
aided by rosary beads pressed between the gnarled fingers
of the retired Sisters of the Academy of Holy Names.
And silent petitions are mouthed
in an air-conditioned hospital chapel,
as Sister Carmella—my Aunt Theresa—
storms the gates of heaven for healing intervention,
sending out special pleas to Our Lady of Perpetual Help.

Inside the surgical Intensive Care Unit,
fluorescent lights reveal my stepfather Bill’s post-op image.
The sight of his figure catches me unprepared—
glassy eyes, belly stained with iodine,
an incision running down the sternum,
and a ventilator forcing air into his smoker’s lungs.
Mom stays close to his bed,
afraid to look away or leave the room.
Her small body trembles and
displays the effects of chemotherapy’s wrath,
evident in hollow cheeks
and in the absence of her black hair.

Unbearable heat conquers the Capital District,
and Mom finally crumbles when our used Chevy Blazer
hisses and groans and stalls along New Scotland Avenue.
She sits down on the roadside curb, dejected.
Her tears cannot be held in any longer . . . they gush forth
as she holds a cigarette and sips a lukewarm cup of coffee.
Almost in slow motion,
a few drops fall toward her Styrofoam cup.
I reach out to catch them,
but they slip through my outstretched fingers.

And after two days in Albany, my sister and I
must leave our mother to return home to Toledo.
On the flight back, in a plane high above
the patchwork of northwest Ohio’s farms and fields,
streaks of pink and lavender compose the sunset’s palette.
And I realize all I can do is pray;
I’m left to trust faith in this family crisis.
I ask God to hasten Bill’s recovery,
while giving Mom the strength to abide.

I lean against the window as the plane touches down in Toledo.
I close my eyes and consider if my prayers
are just wishes directed toward the clouds.
No matter, I tell myself, pray despite a lack of trust.
And so I do. I focus my thoughts on my stepfather
breathing without a ventilator and being moved out of the ICU.

Bill getting a haircut from George, a barber in Rome, New York. Photo by Francis DiClemente.

This essay was published in Star 82 Review several years ago.

Man in the Chair

It is late in the afternoon on a fall or winter day, and I am visiting my mother and stepfather at their home in Rome, New York. They are sitting in their family room watching TV; if I had to guess, I’d say the show is Judge Judy, Criminal Minds or NCIS.

My stepfather, Bill, who owns his own contracting business, is reclining in his favorite chair, wearing a work-stained hoodie and sipping a cup of coffee. I walk into the room and sidle up to him. I put my hand on the bald crown of his head, which has a fringe of brownish-gray hair on the sides, and I feel the warmth emanating from his skull. Often when I do this, Bill will say, “God, your hand is freezing.” But he does not say anything, and I leave my hand on top of his head and take a glance at the television screen while darkness gathers outside the windows.

A sick realization makes me shudder. I pull my hand away because I recognize in the moment that the head of this man I love could, in a matter of seconds, be crushed with a baseball bat or cracked open with an ax blade. Blood could splatter against the walls, and he would slump over in the chair, inert.

And I think this not because I am homicidal or possess a desire to kill my stepfather. Quite the opposite. Fear sets in because I realize the man sitting in the chair, with a beating heart, functioning brain and sense of humor, could be gone in an instant. He could be animated in one moment and his breath snuffed out in the next.

Most likely my stepfather will not be killed by a blow to the head or a tree crashing through the house. A heart attack, stroke or cancer will probably get him in the end. And while I already know this, I pause and allow this knowledge to sink in, so I will appreciate him better.

A year or two after this dark afternoon, my mother would lose her battle with cancer. And her death would remind me that we do not live life all at once. It’s not one big project we need to complete by a deadline or a trip to Europe you have planned for years.

Instead, we experience life in small doses, tiny beads of time on a string. And it helps to recognize them, to acknowledge you are present and alive even in the most mundane circumstances—while you are talking with co-workers in the parking lot before heading home for the day, running errands, doing laundry, baking a chocolate cake, tossing a football with friends, reading to your kids at bedtime. These are subplots that drive our stories forward. They are not exciting. They are not memorable. But they are part of our existence, and we must value them before they and we are gone.

So, after I pull my hand away from Bill’s head, I decide to sit on the couch next to my mother. She hates when people talk during a program because it distracts her, so I look at the screen even though I am not interested in the show, and I do not say a word. But during a commercial break, she mutes the sound with the remote control, and Bill and I converse about something. And I can’t remember the topic we discussed, and it doesn’t really matter.

What I remember is three family members spending an evening together.

Standard

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.

##

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.”

Standard

Post-COVID Winter Walk

I went out for my first real walk since testing positive for COVID, after completing the required isolation.

Branches, sky and building. Photo by Francis DiClemente.

I’m still not at 100 percent, but on this Sunday I was grateful for the combination of sun, sky, snow, air in lungs and limbs moving freely. I’m also thankful I didn’t slip and fall on the sidewalks packed down with ice and snow, resembling a Lake Placid luge track. I’m not taking any days or moments for granted.

A stick in the snow. Photo by Francis DiClemente.

Standard

When Positive is Negative

I thought the large-scale photo of Bruce Springsteen hanging in front of me was a good omen when I stepped in a “spit stall” in the Carrier Dome on Friday to conduct my PCR saliva test.

Photo of Bruce Springsteen from a past concert in the Carrier Dome (likely 1985).

Images of rock legends like Bono, Phil Collins, and Mick Jagger—action photos from past concerts—hang on the walls in the concourses in the Dome. So being a huge Springsteen fan, I thought the Boss would bring me some good luck, resulting in a negative COVID-19 result.

For the saliva test, one of the workers gives you a plastic tube marked with a black Sharpie line—the point you need to reach with your spittle for the test to be accurate. I’ve taken the test about a half-dozen times now, and I have developed a routine for generating the copious amount of saliva required.

I rock on the balls of my feet, pretending I am former Yankees slugger Reggie Jackson getting settled in the batter’s box, and then I spit between my teeth as Reggie used to do after fouling back a pitch. And if I’m really having trouble with dry mouth, I imagine I am sucking on a lemon with the seeds squirting into mouth, or else eating a huge, juicy piece of watermelon at a Fourth of July picnic.

Reggie Jackson batting at Yankee Stadium. Photo by Jim Accordino via Wikipedia.

But forgive my banal digression. The important news: unfortunately, I received a university email yesterday informing me that I had tested positive for COVID-19. As a result, I have started my isolation according to the guidelines set forth by the Onondaga County Health Department. I may need a longer isolation period because I am considered immunocompromised.

My son Colin had tested positive earlier in the week, and although I had stayed masked around him, our proximity in a one-bedroom apartment made avoidance of infection nearly impossible. As of this blog entry, my wife Pamela remains negative.

On Friday I had felt a little weakness in my legs. Occasional fatigue and muscle weakness are not uncommon for me, since I have hypopituitarism, rheumatoid arthritis, and hyponatremia (low sodium). But I thought I should get tested to rule out COVID.

So far, my symptoms are mild—slight headache, weak legs, and mild nasal and chest congestion. I’m taking Tylenol and have doubled my dosage of hydrocortisone, since my adrenal glands don’t produce the steroid hormone. But with my underlying conditions, I need to be hyper vigilant about any changes in my health, with the most alarming being shortness of breath and elevated heart rate, according to my primary care doctor.

The reality of testing positive has wiped away the lingering fear of the unknown we have all lived with each day since this pandemic began. My questions about avoiding COVID and about the severity of its impact are meaningless. The invasion succeeded; the likely variant of Omicron now squirms inside my body. But now I can deal with the actual manifestation of coronavirus, instead of worrying about the “what-if” scenarios.

I can say one other thing about COVID. It certainly prioritizes your existence, what you value most in your life. I think for most people it’s personal health and the health and safety of family. That sometimes gets lost amid the daily pressures of work.

And there is one benefit of testing positive—now I don’t need to avoid kissing and hugging Colin.

Standard

Waiting with Vincent

Instagram Poem #7.  This one seems fitting for today, since I have an MRI scheduled later this morning.

Irises (1889) by Vincent van Gogh.

Waiting with Vincent

A scheduled MRI
of the brain shifts
my thoughts toward
all of the
“what if, worst-case scenarios.”
While waiting for my name
to be called,
I see a print of Irises (1889)
hanging on a wall.

From far across the room,
without my glasses,
the slanted vertical
green leaves
look like snakes
writhing in the dirt.
But the longer
I stare at the image,
the calmer I feel.
Placid is the word
that comes to mind.

And I’m thankful Vincent
spends a few
moments with me
prior to my appointment
with the tube machine.

Because when sitting
in a hospital
waiting room,
artwork by Vincent
never fails to lift the spirits.
A van Gogh painting beats
People magazine
or an iPhone screen
every time.

Standard

Untitled Reflections

The coronavirus has brought unprecedented changes that have altered human existence. Normal life has ended. We are shuttered at home and shuddering with fear.

Nothing I write can assuage those fears; I have no useful insight to offer. You already know the facts.

Schools, businesses and restaurants have closed. The stock market and economy have tanked. Grocery stores can’t keep up with the demand for hand sanitizer, sanitizing wipes, food staples and toilet paper.

Social distancing and pandemic are common words in our vocabulary now.

The situation reminds me of the Depression-era run on the bank in the town of Bedford Falls in It’s a Wonderful Life. It feels like we’ve been dropped into scenes from Cormac McCarthy’s The Road or the movie A Quiet Place. Life in 2020 is dystopian—actually downright apocalyptic. We can hear the thundering hooves of the Four Horsemen. This feels like the end of civilization.

There’s a good chance my wife, son and I may get the virus. There is a testing site on Salina Street in Syracuse, but what happens if we test positive and need to be quarantined at home? What happens if we need medical care and can’t be admitted to the hospital because they are overwhelmed? Who will take care of our son if both my wife and I are incapacitated?

Having hypopituitarism with adrenal insufficiency, coupled with rheumatoid arthritis, makes me immunocompromised and puts me at higher risk of developing complications if I contract coronavirus.

My health has always been fragile. I’ve had multiple brain surgeries, and my diseases diminish my quality of life and reduce my life expectancy.

Less than two months ago, I had Gamma Knife radiosurgery in an attempt to shrink my pituitary tumor and help restore normal vision. My sight has improved; the double vision I had prior to the surgery seems fixed (not 100 percent, but close). Yet all of sudden normal sight doesn’t seem that important.

And this coronavirus is beyond our control. There’s no managing this like other health conditions. I have to accept the reality that I could catch the virus and it could kill me.

There’s so much I hope to accomplish, but I know I may not get the chance to I finish what I started. Multiple writing and other creative projects could be left incomplete. And the realization sets in that I may not get to spend the rest of my life with my wife and watch our son grow up.

I guess I’m trying to imagine the worst-case scenario so it won’t be unexpected if it befalls me. As a Christian I’m trying to place faith above fear, but it’s not easy, and I am reconciling the fact that Christ’s judgment may come sooner than I hoped.

Until then, I get the gift of one more day on the planet. One more day to spend time with my son.

Forgive this hastily written blog. Because things are changing so rapidly, I wanted to get my thoughts down before they escaped my mind.

I wish everyone health, safety and survival.

And since my words often take the form of verse, here are some poems provoked by coronavirus fears:

Coronavirus Poem #1

Coronavirus claiming lives
across the planet.
Shuttered at home
and shuddering with panic,
I wonder:
Will my family and I
outlive the pandemic?
Or have our lives
been lived up?

Not Ready Yet

I’m not afraid to die.
The passage from
life to death
does not terrify me.
But I have a lot
to do before I go.
And what troubles me
is all the work
I’ll leave undone.

Inspired By Coronavirus Fears

You have no control
over when your time comes.
The end will be the end.
And the choice
is not yours to make.
So why be afraid
of what you cannot change?

Trite Maxim
In the Age of Coronavirus

You have to be grateful
for every day,
because tomorrow
can be taken away.

Standard

Frankenstein for a Day

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:

Expanded sella
Transaxial
Craniocaudal
Necrotic degeneration
Residual peripheral enhancement
Hypoenhancing mass
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.

Florida, 1985.

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.

Standard

Double Vision

 Disclaimer: The following is my interpretation of what the doctors told me recently. The medical information may not be 100-percent accurate. I wanted to get the details down primarily for my benefit, as a log of my symptoms, hospital visits and treatment plan.

##

This month marks 35 years since surgeons at Upstate University Hospital in Syracuse extracted a tumor that had been growing on my pituitary gland.

At Disney World in the winter of 1985; the scar from my Dec. 1984 surgery is visible and my hair has not grown completely back.

Subsequent surgeries to remove regrowth followed in 1988 and 2011, along with Gamma Knife radiosurgery in 2012 as a preventative measure.

Two for the Price of One

I had planned to write my annual post, expressing gratitude that I remain tumor free, but it appears a residual craniopharyngioma is now affecting my vision. I started experiencing double vision a few weeks ago, mainly when looking at someone or something from the front—at a distance of a few feet—or at a 45-degree angle. I noticed the faces of my colleagues would separate when I glanced at them across our cubicles. Also of note: I see fine with a hand over either eye. The double vision comes when I look at things with both of my eyes.

Craniopharyngioma example

I went to see my eye doctor prior to Thanksgiving; after a series of tests, he stated my eyes seem to be crossing, whereas previously they had diverged slightly. I asked if the double vision could be caused by his new eyeglass prescription and he said, “No, it’s definitely something neurological.” He contacted my neurosurgeon, who scheduled me for an MRI.

The MRI was performed with and without contrast on Dec. 4, and I saw the neurosurgeon later in the day. When Dr. W. came into the exam room, chewing gum and wearing brown tortoise shell glasses, he said, “OK, so we have some good news. The scan is beautiful, very clear. There’s very little change from the one in September, nothing pressing on the optic nerve. But we have to find out what’s causing the double vision.”

He said he believes scar tissue in the sella turcica, a saddle-shaped cavity at the base of the brain where the pituitary gland rests, is affecting the cranial nerves and causing the double vision.

He said surgery may not help and could exacerbate the problem or damage healthy nerves and blood vessels in the region. He recommended an appointment with Dr. M., the radiation oncologist who teamed up with Dr. W. for the Gamma Knife procedure in 2012.

I asked if the double vision could be caused by a new tumor in another part of the brain or by an aneurysm. He said no. I asked if it could be caused by a stroke and he said, “No, you would have other symptoms.”

He also offered some positive news—he mentioned my eye doctor could prescribe prism lenses, an add-on to prescription glasses that can correct double vision. It doesn’t address the underlying problem, but it allows you to see normally.

I felt relieved because the MRI had not revealed a massive tumor pressing on the optic nerve or infiltrating another area of the brain. No insidious glioblastoma—giving me a death sentence within six to nine months. This was my old friend/foe visiting me again—a benign tumor, slow- growing but capable of causing problems, a health issue leading to concern but not panic.

Radiation Oncology Consultation

At my next appointment on Dec. 13, the tall, thin figure of Dr. M. entered the room and I noticed his hair had become gray in the intervening years. He shook my hand and said, “We’ve made a lot of progress in seven years,” referring to more advanced procedures in radiation treatments.

He held up his right index finger and had me follow it. He asked if I was seeing double vision all the time and whether it was getting worse. “Are you seeing two of me now?” he asked. I said, “Yes,” and I used the wall bumper as an example. “If I look at that thing with both of my eyes, I see two. When I hold a hand over one eye, I see one.”

I told him the eye doctor had performed some tests, including a visual field test, which had showed defects in both the right and left sides.

Dr. M. told me the tumor was tube-like in appearance and near the cavernous sinus, impacting the cranial nerves that control the muscles of the eye.

He recommended five radiation treatments over the course of a week, as opposed to another round of Gamma Knife surgery. He ran through a series of figures—percentages about the efficacy of treatment compared to the risks. I had trouble following the complex information, but the basic idea is to give me the highest dose of radiation possible without causing any damage to healthy structures, e.g. blood vessels in the cavernous sinus. A safe but effective course of action.

He said I may experience some fatigue, but I can return to work every day after the treatments, which should only last about a half hour.

He also made a disheartening statement. “There’s no guarantee the radiation will correct the double vision. But if we don’t do anything, the craniopharyngioma will keep growing.”

Strapping on the Goalie Mask

On Monday, Dec. 16, I received a call at work from Upstate to come in do a radiation map of my brain. When I arrived at the Upstate Cancer Center in the afternoon, the waiting room was packed with patients sitting in the large, comfy faux leather white chairs; one irate man complained he had been waiting longer than an hour past his appointment time. He dropped some profanity and his blonde-haired wife tried to calm him down, to no avail. “This is fucking ridiculous,” he said.

A female radiation doctor called me and brought me to an exam room. She had me sign the treatment consent form and asked if I had any questions. I inquired about side effects. She said the main side effect is fatigue; patients can also experience headaches and some hair loss. She added, “Think of it more like surgery than chemotherapy.”

Then a male tech with dark hair ushered me into a large room with the CT machine. A number of nurses and techs scurried about. They asked me to remove my sweater and dress shirt, leaving me with just my white undershirt and khakis. They had me lie down on the table as they positioned a few different head rests. Once they had the right one in place, they applied to my face what felt like a wet, tight-fitting mask—with the consistency of rubber or papier-mâché. The mask had numerous holes in it, but it was still hard to breathe.

The test itself took very little time; I remained still while the machine moved my body in and out of the tube. When it was done, they pulled me out and the male tech held up the mask so I could see it. I thought it looked like a goalie mask and I asked if could snap a picture with my phone.

Radiation mask

Song Rewind

Since the double vision began, I’ve had Lou Gramm’s voice playing over and over in my head, with the words from the 1978 Foreigner song titled “Double Vision”:

Fill my eyes with that double vision
No disguise for that double vision
Ooh, when it gets through to me, it’s always new to me
My double vision gets the best of me …

An interesting side note: Gramm was diagnosed with a craniopharyngioma in the late 1990s; the tumor caused headaches and memory problems, and Gramm underwent surgery to have it removed. The story is included in Gramm’s autobiography, Juke Box Hero: My Five Decades in Rock ‘N’ Roll, co-written by Rome, New York native Scott Pitoniak.

In conclusion, I present a breakdown of my current health situation.

The negative facts:

The tumor has regrown.

It is causing double vision

The radiation treatments may not fix the problem.

The positive facts:

No glioblastoma or other malignant tumor is swelling inside my head.

I don’t have an aneurysm and I did not suffer a stroke.

The craniopharyngioma is not pressing against the optic nerve.

Prism glasses can be prescribed to correct the double vision.

And so gratitude hits me again, as I feel lucky every time I step inside Upstate University Hospital, thankful that my heart beats and I can breathe, walk, talk, see and hear. Not everyone inside Upstate can say the same thing.

Standard