Radiation Oncology Follow-Up

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.

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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.

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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.

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12/12/84

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.

 

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MRI Results: Negative Equals Positive

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.

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Anniversary Day

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)

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

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.

Our Lady of Guadalupe

Our Lady of Guadalupe

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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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