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.

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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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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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Jacket with a Past

I came home from grocery shopping on a recent Friday night and changed into black shorts and a black T-shirt to relax for the evening. As a gag, I pulled an olive green, double-breasted blazer from the back of my closet, slipped it on and stepped into the living room; I then waited for my wife—who was seated on the couch with our three-year-old son—to look up and notice me. When she did, she howled with laughter and said, “No, no.”

“What, no good?” I asked.

“It’s so out of style,” she said. The shoulder pads are so over the top.”

Of course, I knew she was right.

And one side note: I believe I am colorblind, so while I think the jacket is olive green, it may actually be beige or light brown.

The 1980s blazer is a cross between something Sonny Crockett would have worn on Miami Vice or one of the suit jackets David Byrne of The Talking Heads could have donned while performing on stage or appearing in an MTV video.

But even though the garment is dated, I thought I looked decent modeling it, since I’m actually leaner now than I was when I bought the jacket in the late 1980s at Sangertown Square mall in New Hartford, New York (if my memory is correct). It came with me to Washington, DC for graduate film school and then to my career stops in journalism—to Venice, Florida; Toledo, Ohio; and Phoenix, Arizona.

After returning to central New York in 2006, I left the jacket in my parents’ home in Rome, until I retrieved it a few years ago and buried it in my bedroom closet in Syracuse. I decided not to discard the blazer because I thought I would find the right occasion to wear it; but I never did, as I knew the jacket’s time had passed, as had mine.

But the story does not end there because the jacket has a history. After breaking it out and seeing it encircling my frame, it reminded me of the way I felt about myself in the late 1980s and early 1990s, when I was riddled with self-hatred over my chubby, underdeveloped and feminine appearance (caused in part by my hypopituitarism). No jacket back then would have made me feel good about myself when looking in the mirror.

I’d like to say I’ve moved past the low self-esteem that hounded me in my youth. But the truth is I still struggle with it daily. Professional success does not resolve it; neither does marriage nor being a decent parent. All of us must live with the non-Instagram versions of ourselves—the real, unvarnished truth we face every day—the wrapping of flesh that houses the spirit pulsating inside. And so the jacket is more than piece of clothing to me. It’s part of my past, a slice of my story I wanted to share.

I donated the blazer to the Salvation Army store, and I hope that despite its out-of-date style, someone else was able to get some use out of it.

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Hitting the 50 Mark

As I celebrate my 50th birthday today, I want to offer some brief reflections on hitting the half-century mark.

Most importantly, I must express gratitude for surviving this long. Since 1984 I have endured four surgeries to remove a craniopharyngioma (pituitary tumor) and its remnants, as well as managing the hypopituitarism that followed. In subsequent years, the diseases of osteoporosis and rheumatoid arthritis have been added to my medical history. But my diminishing health has taught me some important lessons. Here they are:

  1. If not this, it would be something else. Yes, I have some challenges, but I have not been given a stage four cancer diagnosis, and I do not suffer another fatal illness. And for that I am thankful.
  2. I must accept the limitations imposed on me by these diseases, keeping the attitude of always trying to do my best and reevaluating my goals and what I am able to accomplish.
  3. The importance of cultivating an attitude of gratitude. I am thankful for my family, friends and full-time employment status, but I also continually remind myself to be grateful for the things we often take for granted. For me these are: standing upright, breathing normally, having brain function (although somewhat impaired at times), having five working senses and working limbs.

So there’s only one more thought on turning 50: I don’t know how many more years I have left on this planet, but I will try to make each day memorable, not in achievement but in the ways I connect with others, spread compassion and leave a positive impact wherever I tread.

 

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Sundries

Busy with work and side creative projects, I haven’t had a chance to update this blog in a while. So here is a mishmash of entries from a scatterbrained blogger:

I snapped this photo of University United Methodist Church on my way home from work on Thursday evening. The way the late afternoon light hit the stone façade of the church commanded my attention.

United University Methodist Church in Syracuse, New York. Photo by Francis DiClemente.

As I took the photo, with the cold air nipping my face and the evening traffic rushing along Genesee Street, I thought the image served as a reminder to me to not allow the hardness and difficulties of this world to form an impermeable barrier around my heart—to separate me from other people.

And looking at the tan exterior of the church, the scene hinted—at least to me—that Christian faith rests not with bricks and mortar, but rather upon trusting in God and loving others. And I think that’s a good message for the Lenten season.

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Early in the week, Sunday night into Monday morning, I spent several hours in the Upstate ER due to a stomach virus; I spiked a fever above 103 and my sodium level dropped. Because I have hypopituitarism, I require a stress dose of cortisone when the flu and other short-term health crises strike, since my adrenal glands do not produce sufficient amounts of the hormone. So a nurse put in an IV, they gave me fluids and pushed a high dose of cortisone.

And sitting upright in the bed—since I was feeling nauseous (which was treated with Zofran)—I listened to a 99-year-old man on the other side of the curtain wailing in pain after breaking his hip. He told the nursing staff he lives in Pulaski, is widowed and has three children. He also possessed charm when engaging with the nurses on the floor, telling each of the women who rushed in to assist him, “I love you like a friend.”

And then after someone from the surgical team came to talk to him, he said, “I’m ready to go home to my heavenly father.” The surgeon was trying to find out from the man whether he wanted them to perform CPR if necessary. The older man never answered the question.

Later I heard him praying aloud, saying, “Please help that surgeon’s hands to be where they need to be. Guide his hands Lord.”

A few hours later, I was well enough to be released. And I realized, once again, the importance of gratitude, especially in terms of health. Every time I go to Upstate—whether to have blood drawn, to get an MRI or to be admitted for any reason—I am thankful for the essential functions of my body. I can breathe, see, hear and my brain works. I remain upright, capable of walking, and my fingers can type on this keyboard. It takes about ten minutes in an ER waiting room to make you realize how quickly your health can fail, how easy it seems for your life to be erased. Illness and accidents await us every day.

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And a day later, lying in bed on the night before I would return to work, I felt stressed about the workload I would face. As I let out a few deep breaths, a line came to me that led to a short poem: “It’s only life.” And here is the finished product.

Gaining Perspective

A thought to keep me calm
Amid the pressures of work:

It’s only life.
Why worry about it?
For in the end,
Despite your best effort,
You will die anyway.

I know this poem is trite and mawkish. I am guilty as charged. But the more and more I write—or should I say attempt to write, or better yet, attempt to write something worth of being published—I have come to a conclusion, one that mollifies me when I consider my lack of success in my literary pursuits.

And here it is: sometimes as a writer you do not choose the words, the story or the best means of expression; instead the words choose you as the only instrument capable of delivering them. So while I am not proud of the above poem, I am glad the three-word first sentence popped into my head and spurred me to put something on paper that did not exist before. That bad poem needed my voice to give it birth.

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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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Medical Magazine Message

Please forgive my terrible alliteration, but I couldn’t think of a more accurate headline.

While getting some blood work done at the Upstate University Hospital patient blood draw lab, I spotted this message written on the back of an issue of Upstate Health magazine (Winter 2018):

Dear Meadow,
I am so Glad
you have a friend
like reily (or reilly). I hope
you have fun tonight.
I Love You!
You deserve to have fun!

The message was dated Saturday, Sept. 22 and was written with a black Sharpie and adorned with two red ink hearts.

I hope Meadow had a fun weekend.

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