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.

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Doctor Office Visit

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

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.

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