The Beautiful Defect: A Body in Crisis A Life in Renewal

By Lilith Costa

A woman decides to have a prophylactic surgery that will forever alter her reflection. But being married, with two young children and already suffering from health issues, diving into hereditary cancer genes may prove more complicated than this stay-at-home mom imagined. On her journey to lessen her odds, she's forced to confront the reality of

• Language: English
• Publisher: Aligned Affiliate Press
• Release date: Nov 22, 2023
• ISBN: 9798218328467

Book preview

The Beautiful Defect

A Body in Crisis. A Life in Renewal.

Lilith Costa

This book is a memoir, it reflects my recollection of my life experience. Some names, characters, dates, and places, have been compressed, combined, and changed for the art of storytelling and because some of these spirited characters deserve their anonymity.

This publication is designed to provide information in regard to the subject matter covered. It is sold with the understanding that neither the author nor the publisher is engaged in rendering legal, investment, accounting, health, or other professional services. While the publisher and author have used their best efforts in preparing this book, they make no representations or warranties with respect to the accuracy or completeness of the contents of this book and specifically disclaim any implied warranties. No warranty may be created or extended by sales representatives or written sales materials. The advice and strategies contained herein may not be suitable for your situation. You should consult with your doctor, or other health care provider, a professional when appropriate. Neither the publisher nor the author shall be liable for any loss of profit or any other commercial, or health damages, including but not limited to special, incidental, consequential, personal, or other damages.

Copyright © 2023 by Lilith Costa

To my mother, grandmother, father, and husband.

The two women who taught me strength and the two men who taught me how to harness it,

thank you!

Disclaimer

This memoir is provided for entertainment and informational purposes only and should not be used for diagnosis or treatment. The contents are not intended to replace professional medical advice. If you have any questions, please contact your health care provider and together, come up with a medical plan that fits your situation. Never delay treatment or base medical decisions because of the information provided in this memoir. 

Following any advice or information provided in this memoir is solely at your own risk. The author accepts no responsibility or liability for any damages or injuries that may arise from any test, product, idea, or information mentioned in this memoir.

Contents

Preface

1.Inversion

2.Marred

3.Confronted

4.Ally

5.Options

6.I… de…clare…

7.What’s to come

8.3 ½ months before surgery

9.Beauty?

10.Preparation

11.Surgery

12.Dissolution

13.No words

14.Introspection

15.There you are

16.Five years later

About the Author

Preface

Nothing devastates life like an unsuspected enemy. Yet it is through our most profound desolation that our genuine versions tend to emerge, and Cancer is such a formidable foe. It doesn’t care how much money you have, your race, your religion, or what plans you’ve made for the future. Some people it randomly attacks. You’re laughing with friends one day, and the next… Bam! You’re cutting this off or out and scheduling for chemo. Others, like me, cancer stalks. I’m genetically targeted, hereditarily screwed. I’m one of the one in five hundred women living in America who carries a hereditary cancer gene. Though I was born with this affliction, I didn’t find out until I was pregnant with my second child.

The craziest part was that the journey transformed my life for the better, or rather, I allowed it to be a catalyst for a much-needed change. Between health issues, parenting, and so-called obligations that caused me to spread myself too thin, I had lost sight of the life I wanted to live. My perception was tuned to a lens that prevented my growth and happiness. I had become my ultimate adversary. At the time, I didn’t understand the change that needed to come, only that I was being hunted. My breasts had been tagged, and that psychotic villain cancer was holding a detonator, waiting to strike.

Tic-tic-Tic-tic…

one

Inversion

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Iwasn’t sure what part of life’s rollercoaster I was on—the slow drift up after a rapid fall or a landing between another long descent. The world was floating in slow motion, everything upside-down, yet I was calm, thankful for any second I had to catch my breath.

It was the spring of 2015. Trees in New York were just starting to bloom, and winter’s frost had settled into a temperate breeze.

My gynecologist worked out of a pediatric office in Woodmere, Long Island, where puppets and dolls from children’s movies sat on shelves in the waiting room. There was a toy kitchen set in a corner and an electronic fish tank that I coveted—pleasing to watch without any of the poopy messes that came with having a pet.

Each of the twelve private rooms had a wall painted with a mode of transportation. I sat on an examination table staring at a mural— a high-speed train coming towards me—rubbing my oblong pregnant belly as though it were beautiful. It wasn’t. Just weeks into my second trimester, I looked like I could topple over, too big, cone-like, almost alien. With my cheeks still sunken in from prior months of lack of nutrition, strangers gawked at me as if I were an escaped science project strolling the streets of New York. Fortunately, the alien in my pod, sucking the life out of me, was my baby boy, who I was struggling to keep healthy and alive. I’m labeled high-risk. I suffer from Graves and Hashimoto’s disease, rivaling immune system disorders. Before this pregnancy, I had a miscarriage; before that miscarriage, a doctor told me that my hormones were so unbalanced I could no longer conceive children. At the time, I didn’t want another. I had my daughter Lily, and it was hard to muster enough energy to give her the attention she deserved.

My husband had joked that it awakened my rebellious nature and inability to deal with the words no and can’t. I think it made me realize how much I wanted another child.

I changed my diet, researched healthy options for my body, and turned my husband, Tom, into an instrument of procreation. His ‘I’m the luckiest man in the world’ quickly turned into how the hell did we manage to turn my favorite activity into a second job!

And so there I was, unnaturally large and miraculously pregnant, sitting on an exam table in Woodmere, when Doctor Frenkel sauntered into the room.

Hi, Lilith! she said with her usual cheerful smile. Her golden hair fell just above her shoulders, framing her youthful beautiful features. How are you feeling today?

I’m well. Tired, fat, still no nausea!

Yay! That’s what I love to hear. No more bedrest. You’re looking better. She sat at her desk, flipped open her laptop, and began reading over my file. Well, she said in a joyful tone, your baby is doing great, blood work looks good…, her voice became softer as she zeroed in on the screen, Mrs. Costa, the results came back that you’re positive for a hereditary cancer gene. An empathetic expression crossed Doctor Frenkel’s face before her thoughtful platitudes and office began fading into a blurry static. My anxiety soared. For some, cancer jumps out of the shadows. For my family, it was a monster we were genetically predisposed to face. It was no longer something my family seemed to get more often than others. There had been so many other health issues that I forgot I asked for a gene test. Well, more like insisted. I got the impression Doctor Frenkel wanted to wait. Which would’ve been a good idea. This new information soared to the top of my worries. A whole new batch of challenges awaited me.

After you give birth, I’d like you to see a genetic counselor, Doctor Frenkel said. That was all my brain allowed me to process.

With the paperwork folded in my palm, I returned to our minivan, where my husband had fallen asleep. I don’t drive. Having public transportation at every other corner and car service a phone call away, I didn’t have the desire to learn until I had children. That desire was short-lived. Once the spontaneous muscle spasms began, I feared getting behind the wheel. Tom worked construction: commercial foundations and docks with a lot of dirt, mud, and debris. Straight from job sites, he’d come home to take me to appointments. Always too dirty to accompany me inside.

I sat very still, staring at the dashboard.

Hey, Tom said, stretching his arms. How are we doing? Tom was an inch taller than me at 5’8 and had a thin, defined frame, a prominent nose, buzzed blonde hair, and seize-your-soul blue eyes that always managed to see further than the surface.

Our baby is healthy, I said. I kept my tone even, not letting sadness reflect from my voice as I imagined my daughter growing up without me.

That’s good. So... why do you look so crazy in the face? He turned the key in the ignition, bringing our car to life. Lil? What’s up?

My results are positive for a hereditary cancer gene.

Okay. His eyes grew big, glancing from the road to me just as his blue iris caught the sunlight. I broke our stare. He needed to focus on driving. Not my face. What does that mean?

That I’m more likely to get cancer. Like 55 percent. It goes up with age and depending on when people in my family got diagnosed.

But you don’t have cancer now, right?

Right. I nodded, letting my response sink in. I didn’t actually have cancer, and cancer isn’t a death sentence. Technology has improved. People had options. Some part of me understood that. Yet it did nothing to quiet any fear-based outcomes from circling my brain or tears from flowing down my cheeks. In retrospect, asking for a gene test during pregnancy, when my hormones were raging, probably wasn’t the most emotionally sound time.

Tom continued glancing from me to the road without so much as a peep. His watchful silence slithered through me like a cold, high-octave, off-key screech.

Where the hell was my, Baby, everything will be okay. I love you, and we’ll get through this? Who gives guarded eyes and dead air at a time like this?

Tom and I had our issues. After fifteen years together, our happily-ever-after shifted from day to day. The difficulties we faced getting pregnant, along with the sacrifices and worries we endured struggling to stay pregnant, had taken its toll. The greatest threat to our marriage was the complications life threw at us and our opposite communication styles. My desire to talk problems out conflicted with his desire to ignore, add that to both being self-righteous, opinionated, and combative.

It was a long ride home back to Rockaway.

They once called Rockaway the Irish Riviera. Though I’m not Irish, Tom and I managed to grow up just blocks away from each other. We went to the same schools, frequented the same places, had some of the same friends, yet managed not to meet until we were teenagers. We called it fate. Any time prior and we would’ve hated each other. Our beach community was full of old homes that once serviced inner-city clientele from late spring to early fall. These days it was a full-time urban oasis, relatively isolated from true metropolitan pace. Growing up by the ocean in New York gave the convenience of city life, stores open 24 hours, public transportation at your nearest corner, yet with the small town feel of the suburbs, green grass yards filled with children’s laughter, your local butcher knew you by name.

Four generations of my husband’s family lived under the same roof in a three-family home that was once a bed and breakfast, then an SRO- single-room occupancy. His grandparents purchased the house in the 60s. And thanks to his grandfather’s kindness, I’ve been able to call this place home since I was nineteen.

Eight of us lived under the same roof. His grandfather, mother, father, two sisters, me, Tom, and our little Lily. The house had its crowded moments, along with a wood-rich interior and choppy layout that was expected of a charming older home. Thankfully, I was used to the mayhem. I also grew up with four generations, but in a tighter space, with bigger personalities. You learn to