A Kick-Ass Fairy: A Memoir

A Kick-Ass Fairy

A Memoir

Linda Zercoe

“I have learned that there is survival behavior and that a patient who exceeds expectations is not just lucky but has induced the changes and the behavior which led to their survival. Being a good patient means being a submissive sufferer and Linda is what I call a ‘respant’ or responsible participant who can be a life coach for us all.”

—BERNIE SIEGEL, M.D., author of A Book of Miracles and Faith, Hope & Healing

“This book will give you a glimpse of what it’s like to be affected by cancer and make you aware of how much more needs to be done to support patients and families with cancer and inherited malignancies.”

—MARGARET A. TEMPERO, M.D., Director, UCSF Pancreas Center;
Leader, Pancreas Cancer Program;
Professor of Medicine, Division of Hematology and Oncology;
The Rombauer Family Distinguished Professorship in Pancreas Cancer Clinical and Translational Science

Copyright © 2013 by Linda Zercoe

All rights reserved, including the right to reproduce this book or portions thereof in any form whatsoever, without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

The names and identifying details of some characters in this book
have been changed.

Cover designed by Kimberly Glyder Design

Photo Credit: Larry Washburn / Getty Images

Print design: Joel Friedlander, Marin Bookworks

Library of Congress Control Number: 2013914529

ISBN: 978-0-9895815-4-7 (Paperback)

ISBN: 978-0-9895815-5-4 (ebook)

696 San Ramon Valley Blvd, Suite #268

Danville, CA 94526

For Doug, Kim and Brad,
who inspire me every day

Foreword

I
always thought Kermit the Frog’s lament was touching. Being different is hard. Being physically different, especially on the inside where no one can see it, is very hard. Particularly when you are a walking time bomb.

My staff and I knew Linda was different from the start. She was too young. She had already had cancer before, a different kind. She was unusually sensitive to radiation. And she was often angry. Why shouldn’t she be? Something was wrong and, for a long time, no one could figure it out.

We’re all at risk for bad things to happen. A tree might topple over on me. My airplane might not reach its destination. A drunk driver going the wrong way might hit me head on. I might get cancer. But all these things are very rare or at least uncommon, even sporadic cancer. But a patient with an inherited cancer family syndrome faces a nearly inevitable brush with cancer. And, depending on the syndrome, the cancer may be difficult to detect early, making the possibility of a terminal cancer very real.

Right now, we do our best to monitor affected patients but we need better technology and preventive treatment in order to make a bigger impact. Hopefully, this book will give you a glimpse of what it’s like to be affected and make you aware of how much more needs to be done to support patients and families with inherited malignancies. With enough focused research in rare diseases, we can transform lives and give everyone a better future.

Margaret A. Tempero, M.D.

Director, UCSF Pancreas Center; Leader, Pancreas Cancer Program;

Professor of Medicine, Division of Hematology and Oncology, UCSF;

The Rombauer Family Distinguished Professorship in Pancreas Cancer Clinical and Translational Science

A Kick-Ass Fairy

June 12, 2012 Journal

It’s 7:20 a.m. on a warm and overcast Monday morning. Doug and I just boarded the shuttle that will transport us from our hotel in Bethesda, Maryland, to the National Institutes of Health, or NIH. We just flew in from California last night and though I’m not normally a morning person, I’m excited and filled with anticipation.

In the Gospel of John, Bethesda is a pool of water near the Sheep Gate in Jerusalem that was used for healing. In the ancient Aramaic language, Bethesda means “the house of mercy or grace.” Mercy and grace have been part of my prayers for a long time.

Once we arrive at the NIH and get out of the shuttle, we temporarily queue up for a security check with the other passengers and are given badges. Then, back on the shuttle, we drive up the hill to the Mark O. Hatfield Clinical Research Center, where we’re scheduled for meetings all day with several researchers in the Clinical Genetics Division. This building is one of many within a large fenced campus that seems to be equivalent in size to a university. Pushing the enormous rotating central door, Doug and I enter the expansive, sunlit atrium.

On our way to registration, we pass the statement in raised silver metal on the light honey-color wood-paneled wall: “The National Institutes of Health is dedicated to fostering discovery at the frontiers of science and medicine… The NIH conducts and supports medical research to uncover new knowledge that will improve the health of all Americans and the human condition throughout the world.”

I feel like I’m on the edge of the future, arriving here with all of the genetic material in each of my cells, which goes all the way back to the beginning of life. I’m humbled and awed that they want to study me and my story. I’m hoping that my participation will make a difference in their research and in my life. I’m grateful that Doug, my husband of almost twenty-four years, is at my side, and that he also has a significant role in their research.

After registration we step into the south elevator and begin the ascent. Deep in thought, I wonder where my story should begin and how, just a month shy of 55, I tell the story of how I got here. I look over at Doug. Our eyes meet as the door opens, and he squeezes my hand as we step off the elevator into the new frontier—the unknown.

Chapter 1

1901–1957

G
iacomo and Frances, my maternal grandparents, were married at a Catholic Mass on November 11, 1923, the fifth anniversary of Armistice Day. Frances, who was an inch taller than Giacomo, was later quoted as saying, “The day of the wedding was the anniversary of one war ending and another beginning.” Their marriage was to last 62 years.

Giacomo was 5 years old when the SS Lombardia docked at Ellis Island in New York harbor in November 1901. He was the youngest of the eighteen to twenty-one children (depending on the source), of my great grandparents Giocinto and Giovanna. Giacomo and his parents, as well as five of his older siblings, crossed the Atlantic traveling in steerage from Sicily.

Upon arriving, they settled into a one-bedroom tenement apartment on Mulberry Street, in Little Italy. We were told that Giocinto would often say to his children, “The streets aren’t just paved with quarry stones or bricks, they are paved with gold.” He was employed as a bricklayer.

“If I had a penny for every time [this or that happened], I would be rich” was a favorite expression of my grandfather. We would all be millionaires for the number of times we heard about how he had to sew on buttons on the street corner for pennies to help support the family while he was going to school. His education stopped at the eighth grade.

By 1910, the entire family was working on an assembly line in a garment factory on the Lower East Side. They made pants. One brother was a baster. A sister operated a sewing machine. Another brother was an ironer, one a finisher, and my grandfather, some sort of apprentice.

In 1918, at the end of World War I, my grandfather, then 22, returned from Europe in his doughboy uniform. Although he was known as Jerry, he preferred Giacomo. At about five foot seven, with a full shock of dark hair and a handsome face, he cut quite a figure. He quickly reunited with his brothers and immediately ascended to his rightful place as an equal partner in what was now their own garment factory located on Hart Street in Brooklyn. There they manufactured bathrobes and smoking jackets under contract with West Point, as well as some hospitals and stores.

After a few years, Giacomo met the eye of a young woman named Frances, who worked a sewing machine on the factory floor in close proximity to the woman known as “Fanny Fly,” who installed the zippers. For Giacomo, it was love at first sight. Even though he was quite the catch, Frances played hard to get.

Frances was a first-generation Italian American. Her parents, Giuseppe and Marie, had immigrated in the 1870s. Her father had just recently passed away from a heart ailment. Her mother was a seamstress.

During the Depression my grandfather’s factory flourished, and they hired many out-of-work family members. By 1940 my grandparents had five children—two boys and three girls. Their fourth, born in 1934, was my mother, also Frances—though she always maintained emphatically that she wasn’t named after her mother.

By the time my mother was 5, they had moved to a large Queen Anne Victorian in Richmond Hill, Queens, a house with fifty windows, two kitchens, and multiple cooks and housemaids. As a teenager, her oldest brother, George, was very involved in the Boy Scouts. An 11-year-old boy named Bruce, who would later become my father, would ride his bicycle from his home in Glendale, Queens, to Scout meetings at their house. There were many times when my mother and father were in close proximity during these meetings, not knowing that eventually it would become part of the backstory of their relationship.

Even though my mother was very smart, skipping two grades in school, my grandfather would not pay for her to go to college. He thought that money for college should be spent only on the boys—even though George, a World War II navy veteran, would attend college on the GI Bill. Since there was only the youngest son left to pay for, my mother felt angry and frustrated by her father’s lack of support. To appease her, my grandparents hosted a big party for her “sweet 16” birthday.

Having already graduated from high school, my mother got a job in Manhattan and advanced quickly from the secretarial pool to the post of executive secretary to the president of a nuclear engineering company. She’d proudly tell us stories about the elaborate process for discarding her typewriter rollers because of the secrets they held. She also became a fashion plate, wearing the most current styles either sewn by her own hand or bought at a discount. In every picture of my mother from that time of her life she is striking a pose, as if modeling, while wearing gloves, all manner of hats, purses that matched her shoes, the latest costume jewelry, and often furs.

My mother was beautiful.

My paternal great-grandparents, Heinreich and Auguste, their son Erich, my grandfather, age 3, and their infant son, Adolf, arrived at Ellis Island from Germany in October 1902, on the ship Pretoria of the Hamburg-American Line. They settled in Brooklyn.

A few months after arriving, Heinreich went missing. The family soon learned that he was gone for good, never to be seen or heard from again. Rumor had it that he’d eventually settled somewhere in the Midwest and started an entirely new family. Auguste worked as a nurse to support her two sons.

I don’t know much more about my grandfather’s youth, but in March 1923, Erich, then 24, and my paternal grandmother, May, also of German descent, traveled from their home in Queens to the Eastern District Court of New York in Brooklyn. There, at 22 years old, May was sworn in and became a naturalized citizen of the United States. She was five foot five, and attractive. In a photograph taken that day, she’s wearing tight finger waves in her hair, and her flapper-era clothing appears expensive. Erich, at her side in a suit, is tall and lanky, with black hair. He was employed as part of a telephone wire installation crew. Five months later their first son was born, followed six years later, in 1929, by Bruce, my father.

Erich rose through the ranks of the telephone company and in his spare time got together with his male friends to make music, usually in the basement of their Glendale home, where he played Dixieland jazz on a four-string banjo. May, who had asthma, played her piano in the living room and at times she gave lessons to the neighborhood children. Also a very talented artist, she spent many hours indoors sketching portraits of young women using graphite pencils and painting watercolors, mostly of outdoor scenes or flowers.

May’s father, having first gone from rags to riches in the first two decades of the century, lost his paint and hardware business during the Depression when his customers couldn’t pay their large IOUs. During World War II, May wouldn’t leave her house, for fear of what might happen to her because of her German roots.

My father, Bruce, grew up very close to his mother. In addition to being a Boy Scout, he was a good student and was on the safety patrol, where he was assigned to traffic control. When he was a little older, he volunteered on weekends, policing Jamaica Bay as a member of the Junior Coast Guard. He attended a technical high school, where he excelled in math and science. However, his college career ended prematurely, after he supposedly broke both his arms playing football and contracted pneumonia. He spent his mandatory two-year tour of service in the army stationed in Germany. When he had time off from his desk job, he toured the country toting his Leica M3 camera.

My father could play the trumpet pretty well and strum a bit on the guitar, although he wasn’t able to keep up with his father and older brother, Eric, who could play a mean clarinet and saxophone. My father wanted to play the trumpet professionally, but also became very enthusiastic about audio electronics and home recording.

My parents were officially introduced at a group gathering hosted by Mom’s brother George, Dad’s childhood friend from Scouts. They dated for about six months before they became engaged. At the time, Dad was 27, six feet tall and of medium build, with wavy dark brown hair combed back from a high, slightly receding hairline.

By their engagement party on April 1, 1956, an Easter Sunday, he’d given up his mustache, his dreams of being a musician, and his Lutheran faith, as required by the bride to be. He was also receiving instruction in Catholic doctrine. Mom, now 21, wore red lipstick and no other makeup. She had given up her dreams of marrying a doctor for the handsome man who was “getting frisky with his hands.”

The party was at her parents’ home, which by this time was downsized to a brick two-story, two-family house in Ozone Park, Queens, near Aqueduct Raceway. The celebration was held in the partially finished basement, replete with knotty pine paneling, linoleum flooring, and ceiling tiles that unfortunately didn’t hide the silver-painted plumbing pipes.

Mom wore her hair pulled back in a French twist. Her dress was sleeveless, blush pink chiffon with polka dots, fitted through the bodice with a large full skirt and layers of petticoats. She matched the dress with a darker shade of pink pearl pumps. On her wrist was a corsage of fresh flowers, a gift from my father. Dad wore a suit and a tie. Everyone was dressed up for the occasion, and most of the women wore flowers.

With a cigar clenched in his teeth, my grandfather Erich played his banjo, and my uncle Eric played an assortment of single-reed woodwinds. Their friend Vic played the trumpet, and someone else from their musical troupe played electric guitar. They performed songs named “Allegheny Moon,” “Jumpin’ with Symphony Sid,” “For Me and My Gal,” and many others.

Marion, Mom’s older sister, sang a soprano version of “Make Believe,” modeling her performance on that of Kathryn Grayson, an operatic singer as well as the star of the 1951 movie version of Show Boat. Together they all sang “Easter Parade.” My grandfather Giacomo, a killer tenor and a hobby opera singer, sang “Song of Songs,” written in 1914, a cappella, not a note off key but missing most of the rs at the ends of words due to his heavy New York Italian accent. Dad, when not attached to Mom, was busy fussing with his recording equipment, checking microphones and sound levels.

After toasts were given with wishes for the engaged couple, dinner was served. The meal had been laboriously and lovingly prepared by my grandmother Frances, who lived to cook and showed her love with food.

For weeks after the party, Dad spent his free time editing the tape recordings he had made, and then had it all made into a record. The long-play 33 rpm disk also included a later recording of his singing a very bluesy jazz version of “Embrace Me,” which featured an entire line of his great whistling.

While on his lunch break at the engineering company where he worked, my father meticulously drew an album cover. In it, a piano holds a drink and a smoking cigarette in an ashtray, while in the foreground, a banjo, a tenor sax, an electric guitar, a trumpet, and a reel-to-reel tape recorder with a microphone attached appear in proper perspective. He mysteriously called the album Music to Have a Bachelor Party By.

Instead of going on a honeymoon after their wedding, my parents settled into their new home in Levittown, New York, a one and a half-story gray-shingled Cape Cod with white shutters. They furnished it in the latest modern décor with a palette of turquoise, gold, and black, peppered with some African accents. Parked in the driveway was their 1953 Plymouth Cranbrook, a large, dark green sedan with a white roof and wide whitewall tires.

Within months of the wedding my mother was pregnant, though at work she hid the fact under a girdle for as long as possible. After the first trimester, Dad’s mother, May, who had been diagnosed with some type of pelvic cancer, died after the radioactive implants with which the doctors had tried to treat her proved ineffective.

Grieving quietly, every morning Dad would drive Mom—who had no reason to have a license—to the train station, and then head to his job on Long Island. Mom took the train to Pennsylvania Station in midtown Manhattan, and from there walked the few blocks to her office near the Empire State Building. About halfway through her pregnancy, when her feet and ankles started to swell and she was too exhausted to continue working, she quit her job. In photos from her baby shower toward the end of her pregnancy, she still is not wearing maternity clothes.

A month later, my parents hosted an afternoon barbeque on a hot weekend in July. Family and friends, including Mom’s former boss and his wife, made up the party. All the usual musicians were there, and after a few beers Dad, slumped in a lawn chair, started improvisational tooting on his trumpet with his eyes closed. The festivities wound down in the evening, and while Mom was standing on a stool putting away plates, she started having contractions.

“I think I’m in labor.”

“It is too early for the baby!” my grandmother said. “It’s not due for another four weeks.”

My mother sat on the couch as ordered, but couldn’t stay still. She told my father to get ready since she thought the baby would arrive imminently. Dad calmly showered, slowly shaved, carefully dressed, and methodically gathered the newspapers. Mom was frantic.

Finally in the car, Dad drove deliberately, while Mom, well into labor, moaned and screamed that she was going to have the baby at any moment. The elder Frances slapped her daughter on the face and told her, “Cross your legs and act like a lady.”

When they reached the hospital, Mom was quickly put onto a gurney. In the elevator on the way to Labor and Delivery, she gave birth to a five-pound baby girl. Though small, I arrived with ten fingers and ten toes.

A few days later, my mother and I were discharged from the hospital. I was swaddled in a striped flannel receiving blanket. My mother looked like a movie star in a fashionable, tightly belted light blue accordion-pleated dress with turquoise-colored beads and matching high-heeled shoes. Her hair was pulled back in a youthful ponytail, and she was wearing sunglasses like Marilyn Monroe’s. After only a few days, she looked like she had never been pregnant.

I was born a month prematurely, under the sign of Cancer, a water sign, ruled by the moon, possessing the tides of emotions, sentimental, and a lover of home. But I should have been a Leo, a fire sign, ruled by the sun, a thinker, impulsive, a leader, someone who follows her intuition.