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.
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.”
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.
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.
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.
Regrowth
Tumor back.
Seeing double
In field of vision.
Radiation set.
Gamma Knife
Gonna restore
Sight and
Eradicate tumor.
Or at least that’s
The surgeon’s plan.
I’ll believe it
When two becomes
One again.
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.
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.
Craniopharyngioma example.
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.
The results of the annual MRI of my brain (with and without contrast) came through last night in the form of a radiology report uploaded to Upstate University Hospital’s “MyChart” patient portal.
The news is good, as the findings show “no evidence of recurrent disease.” With a history of three brain surgeries and Gamma Knife radiation behind me, I am thankful that the pesky craniopharyngioma—a benign, slow-growth tumor near the pituitary gland—appears to be hibernating inside my skull.
And in scanning the report, my eyes delighted in the formation of new word patterns that emerged from the medical terminology displayed on the screen.
Here is the outcome of my verbal exercise, a short, aggregated poem:
Study Result
Stable administration.
Protocol utilized.
System enhancement.
Clear evidence.
History of clivus.
Cells identified.
Recurrent lesions.
Unchanged—
Grossly unremarkable brain.
Gratitude fills me on this day, Dec. 12, as I recall an important moment from my life.
Thirty-two years ago this morning, on Dec. 12, 1984, surgeons at SUNY Upstate Medical Center in Syracuse (now named Upstate University Hospital) pried open my skull and pulled out a large tumor that had swallowed my pituitary gland, stunting my growth and delaying my maturation during my teenage years.
Upstate University Hospital (Photo by Francis DiClemente)
Although it was benign, the position of the tumor, a craniopharyngioma located near the optic nerve, meant it could have caused a loss of vision if left untreated. But the surgeons plucked out most of the tumor in a successful eight-hour operation.
The damage to the pituitary gland left me with two lifelong diseases—panhypopituitarism (a deficiency of all of the hormones the pituitary gland produces) and central diabetes insipidus (a condition caused by a lack of the hormone vasopressin, producing the symptoms of excessive urination and extreme thirst).
Still, despite the need for heavy doses of prescription drugs and constant management and monitoring of my health, more than three decades later I am happy to report my last MRI showed I am tumor free. My vision remains intact, with the exception of reaching the age where I require progressive lenses and reading glasses.
Doctors had to perform two follow-up, through-the-nose surgeries, along with a round of Gamma Knife radiosurgery, in order to achieve the positive results. And I know the slow-growth tumor could make a return appearance a few years from now.
My medical ID necklace
But for today I am free of its tentacles.
Today I am thankful for being alive, knowing things could have turned out differently. One error from a surgeon 32 years ago could have meant diminished mental capacity or motor function, or even worse, blindness. Any number of factors could have changed the outcome.
Instead I am nearly 50 now and married to a wonderful woman. And we have a beautiful young son, a nine-month-old tyrant named Colin Joe.
I believe the prayers my family hurled at heaven on Dec. 12, 1984, had something to do with helping me survive the delicate operation. On this feast day of Our Lady of Guadalupe, I can’t help thinking that the petitions my aunt, Sister Carmella DeCosty, made to the Blessed Mother that day were answered. And in this season of blessings and gratitude, I will take a moment to say my own prayer of thanksgiving.
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.
Francis DiClemente 