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Pretty Is What Changes: Impossible Choices, The Breast Cancer Gene, and How I Defied My Destiny

Pretty Is What Changes: Impossible Choices, The Breast Cancer Gene, and How I Defied My Destiny

4.4 13
by Jessica Queller

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Faced with the BRCA mutation—the so-called “breast cancer gene”—one woman must answer the question: When genetics can predict how we may die, how then do we decide to live?
Eleven months after her mother succumbs to cancer, Jessica Queller has herself tested for the BRCA gene mutation. The results come back positive


Faced with the BRCA mutation—the so-called “breast cancer gene”—one woman must answer the question: When genetics can predict how we may die, how then do we decide to live?
Eleven months after her mother succumbs to cancer, Jessica Queller has herself tested for the BRCA gene mutation. The results come back positive, putting her at a terrifyingly elevated risk of developing breast cancer before the age of fifty and ovarian cancer in her lifetime. Thirty-four, unattached, and yearning for marriage and a family of her own, Queller faces an agonizing choice: a lifetime of vigilant screenings and a commitment to fight the disease when caught, or its radical alternative—a prophylactic double mastectomy that would effectively restore life to her, even as it would challenge her most closely held beliefs about body image, identity, and sexuality.
Superbly informed and armed with surprising wit and style, Queller takes us on an odyssey from the frontiers of science to the private interiors of a woman’s life. Pretty Is What Changes is an absorbing account of how she reaches her courageous decision and its physical, emotional, and philosophical consequences. It is also an incredibly moving story of what we inherit from our parents and how we fashion it into the stuff of our own lives, of mothers and daughters and sisters, and of the sisterhood that forms when women are united in battle against a common enemy.
Without flinching, Jessica Queller answers a question we may one day face for ourselves: If genes can map our fates and their dark knowledge is offered to us, will we willingly trade innocence for the information that could save our lives?
Praise for Pretty Is What Changes
“By turns inspiring, sorrowful and profoundly moving. Queller’s sense of humor and grace transform the most harrowing of situations into a riveting and heartfelt memoir.”Kirkus Reviews
“Seamless and gripping. Readers will be rooting for Queller and her heroic decision to confront her genetic destiny.”Publishers Weekly
“Jessica Queller gives us a warm, chilling, unflinching look at her personal journey of survival with style. The ending will surprise you. Her prescience is astounding. Her courage is inspirational. Brava Jessica!”—Marisa Acocella Marchetto, author of Cancer Vixen

Editorial Reviews

From the Publisher
“By turns inspiring, sorrowful and profoundly moving. Queller’s sense of humor and grace transform the most harrowing of situations into a riveting and heartfelt memoir.”Kirkus Reviews
“Seamless and gripping. Readers will be rooting for Queller and her heroic decision to confront her genetic destiny.”Publishers Weekly
“Jessica Queller gives us a warm, chilling, unflinching look at her personal journey of survival with style. The ending will surprise you. Her prescience is astounding. Her courage is inspirational. Brava Jessica!”—Marisa Acocella Marchetto, author of Cancer Vixen
Publishers Weekly

TV writer Queller (The Gilmore Girls) was 31, single and healthy when her mother succumbed to ovarian cancer at the age of 58, having battled breast cancer six years earlier. Queller chronicles her mother's long and anguished struggle in vivid detail. After her mother's death, at the suggestion of an acquaintance, Queller opted to discover whether she carries the breast cancer gene; indeed, she tested positive for the BRCA-1 gene mutation, which gave her an 87% chance of breast cancer before age 50 and a 44% chance of ovarian cancer in her lifetime. With this knowledge in hand, Queller began the journey toward her pivotal choice: a prophylactic double mastectomy at age 35. Along the way she traveled between the West Coast and New York City, seeking medical opinions, information and unsuccessfully-but not for lack of trying-a man she can love who will father her children before she follows up with voluntary surgery to remove her ovaries. This Hollywood writer's story is seamless and gripping; readers will be rooting for Queller and her heroic decision to confront her genetic destiny. (Apr.)

Copyright 2007 Reed Business Information
Library Journal

Two weeks after Queller's maternal grandmother died from kidney failure, her mother was diagnosed with metastasized ovarian cancer. Eleven months after she, too, died, Queller, single and in her thirties, got tested for the "breast cancer gene" mutation (BRCA). Her results came back positive. Queller, who planned eventually to marry and have children, figured the cancer would come in the latter half of her life. But after doing some research and talking with medical experts and breast cancer survivors-many with her same genetic mutation, BRCA-1-she realized the cancer could strike at any time and that she would need either "vigilant surveillance and hope for the best" or undergo radical surgery. The experience of her mother's suffering-along with her own bravery and strong will to survive-led her to decide on a prophylactic double mastectomy (she has decided to put off having her ovaries removed until after she has the children for whom she hopes). Queller has written a vivid, powerful, informative account of a difficult situation and an almost impossible decision (hers is one with which not all medical authorities would agree) with honesty and grace. Highly recommended for all public library and consumer health collections.-Marcia Welsh, Dartmouth Coll. Libs., Hanover, NH

Copyright 2006 Reed Business Information.
Kirkus Reviews
Television writer Queller recalls testing positive at age 35 for the BRCA-1 gene mutation and her subsequent decision to undergo a double mastectomy. In 2002, the author accepted a job in New York to be closer to her dying mother, who after winning a battle with breast cancer was diagnosed with terminal ovarian cancer. Stephanie spent much of her final months with her two daughters; Queller recalls that her last discernible words were, "This is against my will." In the wake of her mother's death, Queller opted to take the blood test for BRCA; she had to make repeated phone calls before a gruff, harried doctor gave her the results, which meant that she had "up to an 85 or 90 percent chance of getting breast cancer." (Positive test results also signify a 44-percent likelihood of ovarian cancer, which increases after the age of 40.) Upon being advised by multiple physicians that aggressive surgery was her best option, she wrote about her radical choice of a double mastectomy in an op-ed piece for the New York Times and later discussed it on Nightline, personalizing a controversial and relatively new dilemma. Queller writes frankly about everything from overwhelming medical stresses to her desire for children. Scenes from her dating life show one man after another entering and quickly dropping out of the picture. Her decision, viewed by many as unnecessary and even crazy, was validated when the surgeon found pre-cancerous cells in her right breast. This discovery prompted the author's younger sister to reconsider her choice to remain in the dark. Other women who tested positive for the gene are also brought to life in stories that are by turns inspiring, sorrowful and profoundly moving.Queller's sense of humor and grace transform the most harrowing of situations into a riveting and heartfelt memoir. Wrenching, but surprisingly lively.

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Random House Publishing Group
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5.10(w) x 7.90(h) x 0.80(d)

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Chapter One

November 2001

My mother declared that none of us were to leave the hospital until Harriette woke up. Her voice was tense, near frantic. She stood in the fluorescent-lit waiting room of Lenox Hill's ICU, her arms crossed. My sister and I sat on a sofa nearby. It was midnight. My grandmother Harriette Tarler had been a patient at Lenox Hill on and off for years, but recent kidney failure had landed her there permanently. Over the past few weeks she'd withered in fast-motion, like a movie playing at double-speed. She'd developed sepsis. This morning she'd fallen into a coma. The doctor did not expect her to wake up.

My mother looked out of place in this shabby waiting room—like a swan in a chicken coop. Her dark, luxurious hair evoked Jacqueline Bisset, though some people compared her to Diane Von Furstenberg. (“I’m much prettier than she is—her face is too broad,” she’d insist.) My mother was five foot four but stood taller in her signature Manolo Blahnik stilettos. My mom had been wearing Manolos back when Sarah Jessica Parker was in diapers. In fact, my mother had been friends with Patricia Field—the costumer for Sex and the City—in the late seventies. As children, my sister Danielle and I spent hours sitting on the floor of Patricia Field's Eighth Street boutique, collecting pins and pushing them into a cotton tomato pincushion while our mom shopped. When I was about ten years old and Danielle six, Patricia asked our mom if Dani and I could appear in one of her fashion shows. We dressed up in sexy spandex and I disco–roller–skated alongside a dozen adult models while Danielle walked around the rink wearing her yellow rain boots because there were no roller skates in her small size. My mother had always been ahead of fashion trends, but in this instance she'd recognized the talent of Patricia Field twenty years before the rest of the world.

I had just arrived at the hospital after taking a flight from Los Angeles to New York, but my mother and Danielle had been there for eight hours without a break. My mother leaned against the arm of a vinyl reclining chair and said she was thirsty, so I went to the nurses’ station to fetch her some water. When I returned, Dixie cup in hand, my mom was sitting next to my sister on the sofa. Though Danielle is tall and golden blond and our mother was petite and brunette, they were unmistakably mother and daughter. Danielle had inherited our mom's panache: an urban brand of beauty that turned men’s heads and intimidated other women. Danielle had also adopted her style. They each wore layered cashmere and long, narrow pants of the same color—my mother all in black, my sister all in cream. The look was finished with a spectacular pair of heels and two or three pieces of expensive jewelry. My coloring and features resembled my mother’s, but that's where the similarity ended. I’d been a struggling theater actress for years and had recently segued into writing. I was a “ragamuffin” (my mother’s word) who clutched worn copies of Chekhov and made friends with homeless people on the street. During that time, to my mother’s chagrin, my wardrobe consisted of sweaters with holes and old jeans. The closest thing to jewelry I owned was a string of thrift–store beads.

When our mother went to the ladies’ room, Danielle briefed me on what I’d missed. On his rounds, Dr. Roth had informed them that Harriette's case was considered terminal, so she would not be allowed to remain in the ICU for long; the hospital needed the bed. He broached the subject of taking her off life support and our mom became hysterical. She insisted that Harriette would wake from her coma. “Harriette’s threatened to die for ten years but she always bounces back,” my mother cried. “Turning off the life support would be like murder! She will wake up.” The doctor placed a compassionate hand on my mother's shoulder and promised to stall the bed issue as long as he could.

Dr. Roth was fond of Harriette—he’d been treating her for years and got a kick out of her. She’d given him glossy stills of herself as a young starlet with the Three Stooges. Harriette had been an aspiring actress in Hollywood in the 1950s. She’d had a recurring role as the French waitress in the Stooges pictures, which didn't prevent her from sometimes standing in as a girl who got a pie tossed in her face. In those days, her hair was a tawny shade of red and she dressed in form–fitting, slinky attire. Her nickname was “Tiger.” When I was fourteen and won the coveted role of Abigail in the high school production of The Crucible, Harriette coached me on how to market myself as a professional actress: “It’s not enough to be pretty and talented—you need a gimmick, a way to stand out. All the studio heads knew me as ‘Tiger’—I’d sign my notes with a paw print.” Long after she’d stopped acting and moved to New York, Harriette draped her apartment with tiger and leopard prints—the bedding, the rugs, the walls. As an old woman, she still resembled a tiger. She wore a floor–length fox–fur coat, colossal tortoiseshell glasses, and her hair long, silky, and golden red.

She also resembled a tigress in the ferocity with which she guarded her age. Danielle and I never called her Grandma when we were little, always Harriette. When Dani was around ten, she'd once made the mistake of addressing a letter from camp to “Grandma Harriette.” This sparked an angry torrent: “I told you never to do that—now the doormen will guess how old I am!”

Our mother, too, had never called her Mom. When my mother turned sixteen, Harriette started taking her on weekends to Vegas, where they would double–date as sisters. By that time, Harriette had gone through three husbands—two divorces and one annulment. My mom’s father had been Harriette’s first, short–lived husband. He was a cruel man who remarried and forced my mother to babysit for his new children on the weekends of her court–ordered visits. He was also a deadbeat who contributed nothing to my mother's care and stole money her grandmother had willed to her. At sixteen, my mother cut him out of her life entirely and pretended he was dead.

When my mother was a senior in high school, Harriette moved into the Plaza Hotel in New York—the tab covered by one of her married boyfriends—leaving my mother to fend for herself, alone, in Los Angeles. My mother had a roof over her head, but no money. To get by, she babysat and often had meals at the neighbors’. For the rest of her life, my mother would be plagued by the fear that she would run out of money and end up destitute.

That night in the Lenox Hill waiting room, my mother did not allow for sleep. She was a drill sergeant, ordering me or Danielle to dart into the ICU every twenty minutes to check Harriette for signs of consciousness—a stirring, the flutter of an eyelid. Every so often, as if skeptical of our reports, she went in to check for herself. My mother was a willful creature—she'd worked as a fashion designer with her own label for over thirty years among aggressive, conniving men, some of them gangsters. “You have to be tough as nails to survive in the garment center,” she often said with pride. As tough as she was, she had a damsel quality—an elusive aspect that made people want to take care of her. That night in the hospital, both sides were in evidence. She'd glance at her watch with a start: “It's been twenty-two minutes—Dani, Jessica, get in there!” She kept insisting that when, not if, Harriette woke up, one of us must be by her side. As the hours passed with no change, my mother grew panicked. Her bossiness could not hide her true emotional state, which was that of a terrified child. By four in the morning she was pacing, her eyes lit with fear. At fifty-eight, my mother had been spared any direct experience with death. Harriette had to be at least eighty (though she'd never admit it) and was riddled with illness, yet my mother was genuinely shocked to be told Harriette could actually die. I studied my mom, the intensity of her bewilderment. It struck me that this was not a usual display of grief. It struck me that until that night, my mother regarded death as a remote concept that affected other people. In her willful way, she was not prepared to allow death into her life.

Around seven in the morning, I escaped to the cafeteria on a coffee run. The line was long with residents in scrubs coming off the night shift, looking as bleary as I did. I sat down at a table, took out my cell phone, and dialed Kevin. It was the week before Thanksgiving. I was among thousands of American women who had flung themselves back into the arms of an ex-boyfriend on 9/11. Kevin and I hadn't talked in a couple of months, but the morning the towers fell he appeared on the doorstep of the Hollywood Hills guest house I rented and never left.

It was four a.m. in Los Angeles and I'd woken him from a dead sleep. I told him about Harriette's coma and my mother's frenzy, and he was sweet and supportive, as always, but I hung up feeling hollow. I'd stayed with Kevin for nearly two years though there had never been any real passion between us. A giant of a man, standing six foot five, Kevin also had an outsized heart. He was the guy who'd come over in the middle of the night to kill a bug. He would happily keep me company while I unpacked boxes or cleaned closets. Kevin was comforting, easy. Fondness and inertia had kept us together for so long. We cared for each other, but we were more like siblings than lovers. I'd only recently spurred myself to leave him, when tragedy tossed us right back into our warm but stagnant relationship. As I got on the cafeteria line, I resolved to end things with Kevin as soon as this ordeal was over.

Dr. Roth gave Harriette a reprieve in the ICU. Later that day, Danielle's new boyfriend, Bruce, dropped off a shipment of blankets and provisions, and we settled in for the second night of our vigil. People came and went, visiting other patients, surprised to see three grown women with fancy duvets camping out in a hospital waiting room.

That evening, a man was brought up to the ICU on a stretcher, and his wife and daughter joined us in what had by now become our lair. The man had been having a problem with his leg, and on their way to dinner he'd collapsed in the street. We watched the orderly wheel him into surgery—he was awake and rather cheerful. I chatted with the daughter, who, like me, was thirty–one. She was pretty and had a sharp sense of humor. We traded dating war stories. She told me that after a recent blind date, the guy demanded she reimburse him for half the price of dinner because she declined to go out with him again. A few hours had passed when two doctors suddenly appeared, ushering mother and daughter into a private room. Their cries were piercing. I tried to fathom a woman of my age facing the unexpected death of a parent. I couldn't.

Sometime the next day Danielle disappeared for an hour; when she came back, her eyes were puffy and red. She'd been sitting with Harriette and told me it finally hit her how dire things were when she'd glanced at Harriette's hands. "Her manicure is a mess," Danielle said. "Harriette would never, under any circumstances, have gone out in public without her nails perfectly groomed." Harriette had long, Streisand-esque talons, always painted in a neutral French manicure. Danielle and my mother had the same hands, down to the color of the polish. Nails that long were not the fashion, but it was a timeless hallmark of the women in our family. My own nails, however, were clipped and naked, with chewed-up cuticles.

Around three in the morning of our third night at Lenox Hill, my mother was dozing for the first time and my sister slept soundly beside her. I slipped out of the waiting room and made my way through the curtained sections of the ICU to Harriette's bedside. Her skin looked translucent, like tissue paper. Her lips were slightly parted and a pale shade of blue. I was overpowered by a foul odor. It was a distinct rotting smell that I would never forget.

I pulled up a metal chair and drew the curtain around us for privacy. My thoughts ran through the details of her singular life. In her later years, Harriette had become a sex therapist over the phone, advertising in the back of New York Magazine, using pseudo-nyms like Cybil and Sharon, passing herself off as a woman in her thirties and accepting payment from her clients by credit card. She'd had a black Siamese cat named Tutankhamen who looked like a miniature black panther. She toted him around Manhattan on a leash with a rhinestone collar that glittered like diamonds. Tut had an agent for print and television and was most famous for being the black cat in the Movado watch ads. When he died, she ordered a replica from the same breeder and named him Pharaoh. She grew exotic breeds of orchids on the terrace of her Manhattan apartment. Harriette was more colorful than a kaleidoscope—the last thing anyone expected from a grandmother—and Danielle adored her, idolized her. Everyone was charmed by her. Everyone but me.

I had been harboring anger toward Harriette for as long as I could remember. When I acted in my first professional play at fifteen, people said, "Oh, you take after your grandmother," and I haughtily replied that I took after my father, a renowned trial lawyer who had great stage presence. The source of my anger had to do with my mother. My mom had hurt my feelings, disappointed me repeatedly over the years, yet I'd never uttered a word and had rarely blamed her. All the blame was saved for Harriette.

Though affectionate and well-meaning, my mother lacked basic mothering skills.

Harriette had been as maternal as Medea, so my mother was left to pick up clues from other sources, like TV shows. From June Cleaver she gleaned what a family should look like. Though she always worked, my mom cooked and cleaned on the weekends; she kept the household looking pretty and orderly. She roasted a big turkey at Thanksgiving and bought pumpkins for us at Halloween, because those were the sort of things she thought normal families did. My mother's attention was fixed on exteriors. When I was in high school, she'd devote two hours to setting my thick hair in hot rollers for an audition, yet she would not know the names of my teachers or friends, never mind the name of the play I was trying out for. She was the only Jewish mother I knew who took no interest in her daughter's love life. In my early twenties it was a year before she learned my boyfriend's last name, though she would dedicate weeks to hunting in flea markets for just the right piece of furniture for my apartment. That was her way of giving—through the material.

Meet the Author

Jessica Queller has written for numerous television shows, including Gossip Girl, Gilmore Girls, Felicity, and One Tree Hill. She lives in New York and Los Angeles.

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Pretty Is What Changes: Impossible Choices, the Breast Cancer Gene, and How I Defied My Destiny 4.4 out of 5 based on 0 ratings. 13 reviews.
Guest More than 1 year ago
I can't imagine too many books being as informative to women 'and men' as this one! I have already scheduled an appointment to have that blood test performed. I hope you'll read this book.
Guest More than 1 year ago
I haven't been so moved by - nor laughed so hard because of - a memoir since I read This Boy's Life 'by Tobias Wolff - one of my favorite books'. The turning of painful life experience into art - of occasionally far-from-pretty material into beautiful prose - makes this book a pleasure. Ms. Queller has intelligently faced the scariest parts of her life, and her account of the difficult choices along her journey not only made me marvel at her toughness while reading the book, but made me strongly urge the women in my family to get BRCA testing. A challenging topic in this rapidly changing world of ours has been handled with something that I feel is becoming harder to find all the time: grace. I recommend this book, and look forward to reading her next one.
Anonymous More than 1 year ago
A great book for other BRCA positive women and thier suppoters.
Anonymous More than 1 year ago
Anonymous More than 1 year ago
Hauntingly real for anyone who has walked with a parent through breast and/or ovarian cancer. As someone who is BRCA2 positive and prepping for a preventative mastectomy, the book was helpful and thought provoking though most of us are not awarded the same luxuries as Jessica Queller is during her journey. Definitely worth reading. I finished in less than 24 hours!
Kaite_R More than 1 year ago
Although I appreciate this young lady choosing to share her story, I still wouldn't recommend this book to anyone. It's not what I had expected and I was dying to get it over with.
Anonymous More than 1 year ago
Anonymous More than 1 year ago
Anonymous More than 1 year ago
This book was very touching, enlightening and an eye open for women. I think who ever read this book will receive a good message. Women should visit their gynecologist and do mammogram every year.
Guest More than 1 year ago
This is an incredible, thought-provoking true-story of a young woman who has watched her mother die from cancer and then tests positive for a gene mutation that makes her nearly 90% likely to get cancer herself. What would you do if you had that knowledge? Author Jessica Queller eloquently takes us with us on her journey. Despite the heavy material, this book is an easy read - I read it in 2 days - because her writing is clear and the story is so engaging.... You want to know Jessica and are rooting for her all the way. This book is for EVERY WOMAN - not just those with BRCA mutations or with cancer in their family. It is for anyone who believes that true stories often make the best books, and are drawn to the extraordinary stories of 'ordinary' people.
Guest More than 1 year ago
I was very impressed with the writing in this book. It was such a page turner that I finished it in 3 days..Funny, sad, educational, I learned things all women should know and it was fun to read. This is a great book for women in their 30s who are dealing with not finding Mr. Right and not having children yet. Makes you feel grateful for what you have.
Guest More than 1 year ago
A realistic, honest, and heart-felt memoir on the struggles that many daughters of cancer-stricken mothers face. Many daughters go through the rest of their lives frightened about the possibility of a similar fate, a possible genetic cancer risk (some call Previvors!). This is a very important piece of work!!!
Guest More than 1 year ago
This book is one that I have given to several friends to read. I hated that it had to come to an end. I would love to know more about how her life is now as well as her sisters.