A Sight Worth Feeling

By Gi Marie Arena

A Memoir Born out of Narrative: I know what you’re thinking; Oh please, not another cancer story! Well, it’s not exactly. Yes, one of my biggest fears in life became a reality when I discovered I had an aggressive, invasive, rare cancer in part of my eye. And, that being misdiagnosed for eight months, by one of the best, probably changed the playing field for me as far as the chances of losing my eye or worse, parts of my head, i.e. sinuses and brain. Yes, there’s that. But these factors are just the fringe of the story. The crux is where my mind goes as I face every mega-challenge presented during a marathon of treatments and moments of uncertainty and anxiety.
This is a story within a story and it’s about managing the hand we've been dealt in the only way we know how. Without any control and at unexpected moments during my sixteen-month ordeal, I travel in my own virtual time machine back to my very first recall of seven of my twenty-five first generation Italian aunts and uncles. For the record, one was a self-described Heinz-57 and only Italian by marriage. I visit the days that I spent with each of them, unaware that they were teaching me lessons that were preparing me for what I would face in the future. These people, I affectionately refer to as the other parents, rescued me early on from my deeply dysfunctional family. They were my safe harbor from my sometimes-a-lady’s man, “Hey Bud, I’ll have another boiler maker” father and my forever searching, but never finding, emotionally tormented mother.
I share some outrageously, funny stories involving me and my family going back to a time when life was much simpler. And, just to make sure we weren’t having too much fun, fate dealt us our fair share of heartbreaking moments. The book would be a fantasy if I did not include those memories.
As far as the medical component, A Sight Worth Feeling offers some insight (no pun intended) about cancer in general, and I hope it can help others who are faced with a similar circumstance.

• Language: English
• Publisher: Gi Marie Arena
• Release date: Aug 19, 2014
• ISBN: 9781311701312

Gi Marie Arena

ABOUT THE AUTHOR Gi Marie Arena I was born in northern New Jersey into an Italian-American family during one of the most exciting times of our nation. I spent half of my career creating luxurious coiffures and the other half creating correspondence and proof-reading contracts for VPs and CEOs who were involved in a variety of industries. A rebel when it came to academia, I disliked school and was a poor student who just made it with a passing grade. At thirty-something, I attended college and progressed to a 3.8 GPA, but quit after a year. In 2002 my husband and I uprooted from New Jersey and now reside in Flagler County, Florida. Other Books by Gi Marie Arena Thou Art Orca - 2017 - Under the name Gi Arena The nucleus of this story is the result of the awakening of a dormant passion that surfaced after I saw the documentary “Blackfish” which aired in 2013. Much of my story-line was developed utilizing an amazing and wonderful gift—the ability to dream. I co-mingled my wild imagination with reality that was gleaned from documented facts concerning orcas in captivity. The fantastical tidbits fit the theme and paint a visual for certain narratives within these pages. Throughout the book my encounters become more frequent and my connection with these magnificent creatures is obvious. As events unfold, I am more and more able to grasp their higher intellect and innate sense of self-awareness, and I clearly see the injustice and cruelty of holding these precious beings in captivity. You will notice that throughout the story I refer to these sea mammals as “who” instead of the typical “which” or “that”, the correct usage when referring to anything non-human. My ultimate goal is to draw massive attention once again, as countless others have done, to these beautiful sea mammals and to highlight the unnaturalness and miserable state of merely existing they experience while imprisoned. I would love to see all of them released into the wild. And, I dare to think that maybe my story will help achieve this. A featured author in two published anthologies: Tim Baker's Path of the Bullet and Becky Pourchot's A Night Like This.

Book preview

June, 2009

Malignant?

Did he just say malignant?

I looked up at my husband from the chair that was stationed in the center of the tiny examining room, and without uttering a word between us we knew what Dr. Nicolitz had said.

He most definitely said, malignant.

Wait, let me stop you from reading any further. I need to go back to the year before.

In particular, July, 2008, two months after my mother passed away and I was still coping with residual feelings of loss.

Patrick and I were winding down from a typical work day. Dinner was two hours ago and I was plopped comfortably on the sofa watching one of my favorite shows.

Damn, there it is again.

Something was pinching my left eye, probably an eyelash caught between the pink wet folds of flesh on my lower eyelid or perhaps a miniscule piece of remnant fiber-end had managed to wind itself around one of my upper lashes leaving the opposite end to float on the surface of my eyeball.

Yes, one of these could be the culprit and I’m about to find out which.

Whatever it was, it was annoying the hell out of me, on and off all day.

I went to the bathroom, turned on the bright make-up lights that topped the huge wall-mirror and with the index finger of my left hand pulled down slightly on my lower eyelid.

Yikes, that’s creepy.

There was this tiny pink colored growth shaped like a valley.

It took form starting from the inside wall of my lower lid and sloped downward before climbing upwards, ending with the tip of it resting on the white part of my eyeball. Later a friend would describe it as resembling a half-folded piece of raw steak.

Crap, what the hell is it?

While I was still holding the eyelid down, I moved my finger in a small circular motion to see what happened. The growth was pliable and the tail end of it lifted away from my eye, but I couldn’t get the entire section to lift off. It reminded me of a suction cup on the tentacles of an octopus.

This isn’t good and I need to get it checked out, like yesterday.

The next morning I called the office of an ophthalmologist and asked for an appointment with the physician who owned the practice.

After describing what I had seen on my eye, they scheduled me for the next day.

When the technician had completed her preliminary exam, Dr. William Caley entered the room and proceeded with a more comprehensive work-up of both eyes. I joked with him about the flank steak appearance of the growth while I was anxiously waiting for his diagnosis. He spent a lot of time on the area known as the conjunctiva, the inside corner of the lower eyelid.

Well, Mrs. Arena, I’ve never seen anything like this. I’m going to prescribe eye-drops that I want you to use for two weeks and then we’ll see if there are any changes to the growth. If it’s still there, we’ll do a biopsy.

I left the office not feeling too concerned, I thought, how bad could it be?

The medication will probably do the trick.

Two weeks later at the follow-up visit, I sat in his office with my concerns amplified because the growth was still there with no change in appearance.

I waited in the examination room for Dr. Caley when instead the technician appeared and started laying out instruments on the counter. As I watched her, I became apprehensive and decided I didn’t want to continue to be treated by this doctor. Nothing personal. I had my reasons.

I wasn’t going to waste precious time with a middleman. I wanted to skip this step and go right to the top.

When the doctor entered the room, I explained how I felt.

Dr. Caley, since you’ve never seen anything like this before, you need to refer me to someone who has.

I thought back to that spring day in 1994 when I sat in a different exam room with my dear Aunt Marie as we both listened to the doctor give his opinion on the results of her CT scan. Mrs. Demelo, the growth on your kidney is cancer. We need to schedule you for surgery right away.

Instead of falling apart and allowing herself to be led like a scared puppy, my aunt took control.

No doctor, I’m not having surgery until I get a second opinion. I would like the name of a specialist at Sloan-Kettering.

Although she wouldn’t know the outcome of her decision for another four more weeks, it proved to be a wise one.

Dr. Caley referred me to an oculoplastic surgeon whose office was in Jacksonville, eighty miles north of us. This is an ophthalmologist who specializes in many different types of eyelid and facial surgery, ranging from simple eyelid mal-positions to more complex reconstruction involving the eyelids and surrounding forehead, temporal and cheek areas. It just so happens, he was not in-network on my health insurance plan.

Since I wanted the best doctor and facility caring for my eyes, I decided it was worth paying a little more out of my own pocket, considering his office was located in one of the hospitals that ranked near the top of the US News and World Report List of Ten Best Hospitals in the Nation.

I was able to get an appointment for early August.

After I secured a date to see him, I checked him out on a medical web site where patients rate the doctors and medical facilities. I was happy when I didn’t see anything about him that would give me reason to doubt his competency. In fact, I didn’t see any comments at all.

When I went on the web site of the facility where he worked, there was a link to a site that showed an impressive list of publications by him. I felt as if I did the best I could as far as researching this doctor.

The day of the visit, Patrick and I sat in the exam room and after a short wait, Dr. Stanley Taylor appeared. I said hello and with my eyes focused on him like a deer caught in headlights. I blurted, Dr. Taylor is the growth on my eye cancer?

I felt like I waited forever for him to respond to my question. He seemed unflappable and almost disconnected, aloof like. His face lacked any expression, and to me with my ethnic background this seemed weird.

Mrs. Arena, I won’t know until after I have looked at it.

Of course I knew this and realized I was being unrealistic expecting him to give me a diagnosis before he examined it.

As Dr. Taylor slid his stool closer to my chair, I sat mesmerized staring into his eyes and wondered if he was wearing contacts. His eyes were blue like the waters surrounding the Caribbean and a nice compliment to his auburn shaded hair.

After an extensive examination, with special attention given to the lesion, Dr. Taylor diagnosed it to be benign.

Really, it’s benign? Oh thank God!

The thought that it might be malignant had consumed me for days leading up to this visit, so I was extremely relieved to hear that it was not.

We discussed doing a biopsy which could only be performed by excising the entire lesion. Wondering if it was necessary to undergo a major surgery at this time, I asked for his opinion.

With confidence he gave it.

Sometimes these things just disappear on their own.

Well then, doctor, do you have any concerns if we just monitored it for a while?

No, I don’t have a problem with that.

So, doc, you’re comfortable with the decision to wait and watch?

He nodded and at the same time replied, Yes.

I knew from past experience that sometimes under stress we can misinterpret information that is told to us. So, before leaving his office, I questioned him once again just to confirm that I heard him correctly.

After going over our earlier conversation, I was satisfied and left feeling reassured.

I didn’t get a second opinion because I had complete confidence in this doctor. It was a decision I would forever regret.

On April 30, 2009, nine months after my first visit with Dr. Taylor, I was laid-off from my job where I had been working as an administrative assistant for the last three years. The company began downsizing and I was one of the first to go.

This would usually have bothered me to no end and brought me to tears, but I realized this was the perfect opportunity to forge ahead with a project that had been on my mind since Patrick and I left New Jersey and moved back to Florida in 2002. I wanted to write about some very special people in my life who played a vital role in my upbringing. They were the children of Italian immigrants who came to the United States during the early 1920s. Inspired by their memory and the unique relationship I had with them, I was excited about having something to keep me busy while I applied and interviewed for jobs. I even thought of a title, Aunts and Uncles – The Other Parents.

I was unemployed for just over a month when I picked up a pen and started composing an outline. I was having trouble choosing a starting point. The thought of writing a book seemed a lot easier than it actually was.

Little did I know that mind-blowing circumstances would relieve me of having to struggle with where or how to begin. My little project came to an abrupt halt after receiving the shocking news that I had eye cancer.

May, 2009

As it turned out, after some time had passed since my first visit with the Dr. Taylor in 2008, I noticed the lesion was still present. So I scheduled a follow-up visit with him for May 1, 2009.

Split Lamp photo taken at Dr. Taylor’s office

At the time I called to make that appointment, I had no idea I would be unemployed when the day arrived. As long as I was working, I could afford to pay the extra out-of-network costs I would incur for Dr. Taylor’s services. Now that I was unemployed, this was no longer an option. Even so, as a precaution, I kept the appointment with him.

During that exam, once again, I was relieved when he confirmed his original diagnosis from the year before. The lesion was benign.

Mrs. Arena, the lesion has increased in size only minimally, but I recommend having it excised and biopsied.

Doctor Taylor, I agree and it was my intention during this visit to schedule a date for you to do the surgery, but things have changed.

I explained that I had recently lost my job and would need to find another doctor who could do the procedure. I asked if he would give me the name of a few of his peer colleagues who were not associated with his hospital.

I knew it wasn’t going to be easy finding an Oculoplastic Ophthalmologist since my recent search efforts within my local area had produced zero names.

You need to find them on your own, he offered.

A lot of help he was.

Fortunately, Patrick, my other half for the past twenty-nine years, was employed and had medical benefits so I was able to go on his plan. I found an in-network specialist, also located in Jacksonville, and scheduled a consultation with him to discuss removing the lesion. Since I was previously told on two different occasions it was benign, I didn’t feel it was an urgent matter and made the appointment for the early part of June.

The day of my first visit with Dr. Ernst Nicolitz shook my composure like a volcano that had been dormant for a thousand years and suddenly spewed fire. It marked the beginning of numerous revelations about the one thing I dreaded the most.

After he conducted a brief examination of the area, he gave his opinion.

Mrs. Arena, I don’t think the lesion is benign, in fact, I’m sure it’s malignant.

Shocked and irked at the same time, I responded, How could this be, just recently, my former doctor diagnosed it as benign? Look at his report, it’s all there!

In a soft-spoken voice dripping with a molasses-coated drawl, he responded.

Mrs. Arena, I hope I’m wrong.

Something in the way he said those words made me think that he wasn’t.

He stressed the need to have it excised as soon as possible. I could tell he was concerned for me.

Although I wasn’t happy with his diagnosis, I decided I liked him. He was sincere and compassionate.

I didn’t know it then, but I would be forever indebted to Dr. Nicolitz and he would always hold a special place in my heart.

Before leaving his office, Patrick and I met with his scheduling nurse and made arrangements to have the surgery done at the next available time slot. Dr. Nicolitz would perform the procedure at his surgical center which was located in the same building as his office. It was considered same-day surgery and from the time of admission to discharge would take about five hours.

It should not have surprised me, having cancer. It slithered like a serpent through the bodies of most of my family members. My father had throat cancer but died of a massive stroke, my mom, bone cancer. Of the seven aunts and uncles I shared a unique relationship, all but two gallantly fought their own battle with this flesh-consuming disease.

As we exited the building, the implications started to sink in during the drive home. Apparently, I had been misdiagnosed for eight months. Even though I was stunned by what I had learned, nothing could diminish the dreadful feeling I was experiencing at the moment.

The hour long drive on I-95 south was ample time enough for my mind to wander. I thought about how we only have so much control over what happens to us and it is so very little control.

Sometimes our fate is the direct result of the paths taken by others.

EVERYONE HAS A BEGINNING

Dad

At the age of twenty-six, my paternal grandfather, Francesco Palacino, was one of 2,042 passengers on board the Taormina whose origination was Naples and destination, New York City. His ship docked on December 25, 1919, Christmas Day. What a gift it must have been for him and the rest of the passengers on that voyage!

Grandpa Francesco, who would use the nickname Frank shortly after arriving in the U.S., was from the region of Bari where he was a mason by trade. He was fortunate in that he was able to take advantage of this skill while living in America.

I am still amazed by his accomplishments. Even with seven children to support, Grandpa Frank managed to buy a small three-bedroom house a few years after arriving in the U.S. It was located on a quiet street in the cozy town of Hawthorne, New Jersey. The property had a large yard where he grew vegetables, raised chickens and rabbits, and where he built a wooden shed to keep the two wine barrels he used for storing his homemade wine.

My dad, whom they named Dominic, was Grandpa’s firstborn.

Dad had six siblings, two brothers and four sisters. The next-to-youngest brother, Frank, was born with a crippling disease, and to this day, no one left alive in our family knows the actual diagnosis. I don’t have any memories of him, but I do remember the day he died. I was six and I heard my family talking about his funeral.

My dad had his first job in 1936 at the age of nine. He used to get a nickel for every jug of wine he carried from his house to a nearby building where a group of local Italian men used to gather. Grandpa Frank made his own wine and when it was ready for consumption, this signaled the time for his oldest son to go to work.

Dad told us his father would repeat the instructions in broken English.

Dominic, if a cop-a stops you, drop-a the jug.

The jug, made of glass, would break, and the evidence would be gone.

I know Grandpa Frank never made much money selling his wine. Whatever he did earn at the time went toward feeding his family.

It wasn’t until I was in my forties that I finally got up the nerve to ask my dad about his relationship with his father. He told me he couldn’t remember his father ever telling him that he loved him. He said Grandpa rarely hugged him or kissed him when he was a baby or a young boy.

This behavior played out both ways. I don’t recall ever seeing my dad kiss his father, and I rarely saw him give him a hug. And when he did, I remember there was the same awkwardness passing between them that I experienced when my parents would nudge me in the direction of my grandparents urging me to give them a big hug and a kiss.

Grandpa Frank wasn’t the type of grandparent who would be standing with arms open waiting to embrace his grandchildren whenever they appeared. He held his emotions close and I noticed this same trait in my own father.

Grandma Vincenza and Grandpa Francesco

My paternal grandmother, Vincenza Sentora, was born in Scranton, Pennsylvania on December 2, 1907. When she was three years old, her family took her to Italy, where she remained until her return to the United States on January 11, 1924, a passenger of the Conte Verde, at the age of sixteen. One year after arriving in the States, she was introduced to my grandfather, and in 1926, after a year-long courtship they married.

I never knew Grandma Vincenza. She passed away in 1945 at the young age of thirty-seven. Whenever one of us grandchildren would ask about the cause of her death, we would always get a vague explanation. It was as if my dad and his siblings didn’t know the circumstances. She passed, and as was the case with both my parents and their brothers and sisters, they didn’t ask too many questions and were rarely given any explanations.

I do know that in four years after Grandma Vincenza died, Grandpa Frank went back to Italy and in three months returned to the United States with his new wife, Maria. He also brought along her sister and her sister’s two children to keep her company. It was a package deal.

Grandpa Frank had found a mother for his seven children. She didn’t speak a word of English and she was as crazy as they get. I guess one would have to be to marry a man who had seven children still living at home, and one of them inflicted with severe physical and mental challenges.

Grandma Maria’s manic depression went unnoticed by Grandpa Frank while in Italy, but surfaced soon after her arrival in the States. She spent most of her life in and out of hospital psych wards and was responsible, in part, for the majority of the pain and suffering Dad’s younger siblings had endured while living with her.

My dad and his two oldest sisters, Marie and Anna, found it easier coping with their unstable stepmother since they could always just leave the house and visit a friend or neighbor. But the younger ones were at her mercy.

Imagine waking up one morning to find your stepmother sitting on your bed holding a butcher’s knife in her hand.

That’s exactly what happened to Uncle Mike, who was the youngest. He opened his eyes just as she was slowly raising the knife above his head with this crazy look on her face, repeating in a spooky whisper, Mike, Mike, wake up. He didn’t wait for the knife to travel any distance. He jumped from the bed and ran for the back door taking only a second to grab his shirt and pants as he exited his room. The next day he sneaked into the house and got whatever belongings he could carry out with him. He never went back after that. He was seventeen.

There were other incidents that involved these children when they were younger. My Aunt Jean, the fifth child born to Frank and Vincenza, told stories to me and my cousins as we sat around her kitchen table and hung onto her every word. She could always command an audience when she spoke. She recalled what it was like living in that house with her stepmother.

As a young teen, Aunt Jean struggled with a bed-wetting disorder. In attempting to break her from this habit, her stepmother wouldn’t allow her to change out of her wet pajamas or change the sheets. My aunt told us that it was common back then to see bed bugs and to have meals of just bread and soup.

My step-grandmother cannot be blamed entirely. My grandfather is equally responsible for the plight of his children. Where was he when this was going on? I know that after being in the United States for some time Grandpa Frank did make a decent living. He certainly could afford food that was more nourishing than just bread and soup.

Wedding Day for Grandpa Frank and new wife, circa 1949-50

As was common behavior for my dad’s generation, he and his siblings always remained respectful to their father and stepmother even after they left home to be on their own. In spite of the suffering they had endured in the past, they returned to their childhood home every other Sunday, bringing their spouses and their own children with them. My mom and dad took me and my brother to visit Grandma and Grandpa Palacino, and we would play with my cousins in their backyard, which was like an enchanted forest to us.

My poor dad, I don’t believe he was ever able to crack the shell that surrounded his heart. He never broke through the emotional barriers erected during his childhood years. I wonder if he ever felt joy in his life. Fortunately for me, I always did. This was not by accident. Something went right for me somehow, and I suspect it had something to do with my aunts and uncles and the love they shared with me.

From my father’s family came three people I love immeasurably: Mike, Jean, and Marie.

Mom

I cannot begin to imagine the disappointment that my young grandfather, Michael Verela, must have felt the day he was cornered at the Stazione di Foggia by an angry crowd consisting of his former and future bride’s family members, who were one and the same. The family chased him down and demanded he marry my grandmother, Mariatta Peruccini.

He had missed his once in a lifetime chance to board the train for northern Italy that would ultimately take him to the country he was longing to visit—France.

Grandpa Michael was originally married to my grandmother’s sister, Anna Peruccini, who became seriously ill within the first year of their marriage. During this time, Mariatta, who was Anna’s sister, was sent to their home to care for her and to do the cooking and cleaning for her brother-in-law. When Anna died that same year, her family obligated Grandpa to marry Mariatta.

Grandpa Michael was not a willing suitor. He was just moments away from adventure and excitement, a new beginning, or so he thought. Besides, he had just lost his young wife. I’m sure he was emotionally drained and worn out physically. The last thing on his mind was marriage. And he definitely wasn’t considering marrying his late wife’s sister!

I’m not so sure that my Grandma Mariatta was happy with her family’s decision either. She had just lost a sister, and it’s quite possible she didn’t find my grandfather attractive in that way. But, as was the case with many of the people of their time, my Grandma Marietta and Grandpa Michael did not rebel or question their elders. They just married.

At the age of thirty-eight, Grandpa Michael made the trip to America alone on The Madonna, which departed from Naples and arrived in New York City on May 11, 1920.

A little more than a year after he arrived in the States, Grandpa Michael sent for his wife of thirteen years and their four children, two boys, ages eleven and six and two girls, ages four and eighteen months. Grandma Marietta and her four children crossed the Atlantic on The Patria and arrived at Ellis Island on August 12, 1921, along with 533 other passengers.

Grandma Mariatta w/Soccorsa, L to R Matteo, Lucrezia, and Pasquale, circa 1920

Grandma and Grandpa Verela settled in the town of Paterson, New Jersey, where they eventually had my mother who was the second youngest of nine out of thirteen children who survived birth. I was told that by the time she and her younger brother Georgie came along, Grandma Mariatta and Grandpa Michael were plain worn out.

Grandpa Michael worked ten-to-twelve-hour shifts, six days a week, at the die factory located within walking distance from their apartment. When his shift was over, he would make a stop at the corner saloon, where he would enjoy a glass of wine or two (or more) before heading home. I believe this was Grandpa Michael’s daily routine until he retired.

Mom and Dad took us to see Grandpa and Grandma Verela on the Sundays we weren’t visiting my father’s parents. I remember Grandpa Michael was a gentle and quiet man; I don’t recall there being as much as one sentence spoken between us.

My Grandma Mariatta was a little spitfire.

When she wasn’t taking in sewing jobs to earn some extra income, she would often leave the younger children with the older sisters and brothers while she socialized with her paisans at the Italian Club or took bus trips with them to south Jersey and even one time to Florida for a week.

Grandma Mariatta and Grandpa Michael, circa late-1960s

My mom was cared for and disciplined throughout most of her childhood by her two older sisters, Lucrezia (Clara) and Soccorsa (Sadie).

Aunt Clara and Aunt Sadie forever own a special place in my heart.

SQUAMOUS CELL CARCINOMO (SCC)

Gi, hit the button.

Patrick was referring to the garage door remote clipped to the sun visor on my side. I was surprised that we had reached home already. I had been in such a faraway place thinking about my grandparents, that I couldn’t recall passing any of the familiar landmarks during the ride.

We entered the house and were immediately greeted by our three lovable dogs: a black lab, a toy fox terrier, and a peek-a-poo. I got down on the floor and hugged them as they vied for my attention, the big one’s tail wagging happily, sending a slight breeze across my forehead.

I was glad they were there to offset my exaggerated preoccupation with going under the knife. Mostly, I worried about having an adverse reaction to the