Life in Asymmetry: A Hopeful Journey over the Peaks and Valleys of Genetic Breast Cancer.

By Raychel Kubby Adler

As a young girl, Raychel Kubby Adler dreamed of having boobies. Wearing a polka-dot bikini top stuffed with Kleenex, she would stare in the mirror envisioning two beautiful coconuts.

But in the next 36 years, her outlook shifts, and when she looks in the mirror, all she sees sitting on her chest are ticking time bombs.

Life in Asymmetry tells the story of what happened in between. From the flatlands of puberty, across the boobie mountains of parenthood, and traversing the landmines of genetic breast cancer, Adler illuminates what it means to live with genetic cancer and to be a previvor. In this dazzling memoir, Adler looks at the interplay of genetics, personal choice and chance that shapes each of our lives and asks us to explore the course of actions we might take when offered a unique glimpse into our possible futures.

By telling her story, Adler brightens the horizon for future generations of previvors, including her two daughtersso that they may know the unmarred beauty of lifes asymmetry.

Let them imagine coconuts.

• Language: English
• Publisher: Balboa Press
• Release date: Aug 11, 2016
• ISBN: 9781504358811

Raychel Kubby Adler

Raychel Kubby Adler lives in Davis, California, with her husband, two daughters and their dog Chewbarka. She holds a Master’s in Public Health, is a certified Wellness Coach, teaches cycling classes, runs a conflict management/physical education program, and writes a blog on wellness, parenting and breast cancer.

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PROLOGUE

As a little girl, I dreamed of having boobies.

Wearing a blue polka-dot bikini top under my clothes and stuffing it with Kleenex, I stared, long and hard at myself in the full-length mirror behind my bedroom door, imagining what would one day grow on my chest. Other days I dressed in the souvenir coconut-shell bra I got in Hawaii, and filled it with balled up socks.

My fascination didn’t end with my own body. I loved to watch my mom go through her primping routines. Sitting cross-legged on my parents’ bed, I got a good view into the bathroom where she sat at an armoire applying makeup as she readied herself for a rare night out with Pop. She wore a fitted silk half-slip and a conically shaped bra, and a favorite strand of her mother’s pearls adorned her neck, striking against her tanned chest. She looked like a Hollywood starlet getting ready for her debut, turning and inspecting herself from every angle. I took mental notes on all the details of her appearance and filed them under beautiful in my mind.

Then they arrived.

Puberty brought me little perkies, or technically, breast buds, as my pediatrician Dr. Zanvil called them at my appointment. As if that weren’t embarrassing enough, he used his three middle fingers to probe at my barely-there chest. Then, to lend insult to injury, Dr. Zanvil proceeded to place my mom’s hands on my chest so she could feel me up too.

All was not as grand as I expected with these new appendages. I was the first girl in the fifth grade to get them, a time in life when the last thing I wanted was to stick out. I remember learning to play bridge as a part of our math unit that spring and I was more concerned with making sure my cards covered my chest than in how many trumps I could take that round.

What I had longed for so badly now seemed mostly irritating. They were there to stay though, so I decided to make the most of my mounds, and fortunately, within a year they were coming in handy.

They were a big part of the reason that Marc Rosenblum kissed me when we played spin the bottle at 6th grade science camp, and again two years later, sitting in the gazebo outside the 8th grade graduation dance, when Matt Bloom put his hands under my Gunnysack top and sloppily groped my newly ripe melons.

Slumber parties became the best—a chance to take off our t-shirts and show each other our cool new bras. After watching a VCR movie like Ghost Busters or Back to the Future, all the party girls would gather in front of the bathroom mirror, wearing only pajama pants and no tops and chant:

"We must, we must,

We must increase our bust.

The bigger the better,

The tighter the sweater,

The boys are depending on us!"

By high school I had full-fledged boobs, and I wore them like badges of honor. Young and firm, they provided a great display in my swim team suit, strapless Junior Prom dress, and my billowing, hippie blouses. For my suitors, they were an amusement park, and I was glad to have them to share. My melons were there for the ride when I lost my virginity. Juiced up on homemade wine coolers, wearing my first lacey bra, Dire Straits Water of Love playing in the background, and Tim’s crimson hair and matching red condom—it was the perfect setting for a Valentine’s Day to remember.

Once collegiate, my breasts were most fully appreciated. It was their most playful time in life. They were described by those lucky enough to get to know them as stacked, a nice rack, and, one of my all-time favorite compliments, a perfect handful. Looking equally great jutting out underneath my UCSC banana slug hoodie or in a push-up bra as they bounced to the rhythm of my funk moves at dance parties, my ta-tas enjoyed this new carefree life. They were even bestowed the nickname billabongs for the way they curved around the shaft of the 5-foot bong we enjoyed on the weekends. Those girls were ready to rock.

But like a good college party, busted early for being too big or loud, my booby party was cut short by a quick turn of events.

Suddenly my breasts were bull’s-eyes.

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We three by the fireplace on Palo Hills Drive. Early 80’s.

PART I

BUDS

It is far more important to know what person the disease has, than what disease the person has.

~Hippocrates

CHAPTER 1

APPLES

It’s not pretty to watch a grown woman beg, especially when she’s your big sister, and she’s dying, and she’s begging you to do something that could have saved her life. But I had no choice. We were in the kitchen of the first house I ever owned in Davis, CA. Around the table, the same one my father had grown up with in Phoenix, Arizona, were myself and my big sister Lisa, who was lying across the table grabbing at my arms like a mad woman, determined to convince me it was time. My husband Mitchel was doing the dishes, trying not to make too much noise and wake our baby daughter Marley sleeping down the hall.

Lisa and I had a unique relationship. Born 16 years before me, Lisa was at times a big sister and at other times my cool mom. I was Lisa’s mini-me in many physical ways—same face, same body shape. People always commented on how much we looked alike when they saw us together. Most picked up that we were sisters but some assumed we were mother and daughter, or that Lisa was my aunt. Without missing a beat, one of us would respond with our go-to story, twins separated at birth by 16 years. But what was even more striking was the ways in which we shared other less genetic characteristics like having the same laugh and weird sense of humor, and a shared passion for music, cuddling, and rubbing feet. I loved our sameness.

When my mom was with us, people really got confused. In our three silhouettes there was a surprising symmetry. My father, who went by Pop my whole life, had a favorite aphorism, The apple doesn’t fall very far from the tree, which rang true for the female line of our family and I was proud of it. The same phrase however could make me cringe when Pop used it to imply I was like him in some way.

Yet when my mother and then my sister got diagnosed with breast cancer within six months of each other, it did cross my mind that I might be next, but I let it go. Although a laboratory just down the road at UC Berkeley was coming close to cloning the first breast cancer gene, it would be another year before the public was aware of it. Plus, it was no great stretch to find a cancer culprit in the rays coming from the microwave my mom used to cook most of our meals, or the water we had been drinking our whole lives in Los Altos Hills.

It wasn’t until Lisa found her second breast cancer tumor eight years later and was urged to undergo genetic testing that our understanding of the significance really hit home. Recent research had identified two genetic mutations, which put carriers at very high risk for early onset breast and ovarian cancer. Due to her multiple occurrences of breast cancer, the first at the young age of 36, Lisa was a prime suspect for this condition, and given my mom’s and my sister’s diagnosis, it was no big leap to assume I was next.

From the day Lisa got a positive result, it became her number one priority to make sure I got tested.

As I sat at the kitchen table looking at Lisa I realized that her pleading held even graver meaning. She had recently learned that her cancer had metastasized to her spine and there were a few spots in her lungs. Lisa was clear that she could no longer save herself; so she made it her prerogative to make a difference for me. She was trying to protect me like only a loving sister could.

Closing my eyes, and rubbing my hands against the kitchen table, I could feel the stories of those who had sat at this same table in the grains of wood. I could hear the sobs of my grandmother, crying at the table when she returned from the cemetery after putting her not-even-three- year-old son to rest. I could almost see my mother sitting next to me with her lunch of salad and a quesadilla, the phone to her ear as Lisa told her the news that she also had cancer.

The sound of Mitchel turning on the garbage disposal pulled me out of my thoughts. Marley was now far enough in her sleep cycle that the noise wouldn’t wake her. When I looked up at him he shot back a look that let me know he appreciated how challenging all of this was for me—being pregnant and having babies without having my own mother around, Lisa being so ill, the pressure to do something about my own risk, and the undeniable implications all this would have on Marley and the new baby girl brewing in my belly.

I looked up at Lisa, who was still leaning across the table as if the closeness of our faces might lend urgency to her pleading. It is true that her pale blue eyes were like a mirror into my own—the lines in her face telling a story of what was ahead for me.

Tears flooded my eyes and I blinked hard trying to clear them, yet through this cloudy vision I saw my sister from a new perspective—her features morphing into something asymmetrical to mine; close, but not an exact reflection.

I would have different choices to make. The future was not predetermined by my genetics alone. There were several options and infinite possible outcomes.

Pop was right, our apples were similar, but he didn’t account for what happened after each apple fell to the ground. My apple might land close to the tree, but there was no telling where it would roll to after.

I could change the course of my apple.

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Lisa and me before her wedding in1986.

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Mom, Lisa and me (right to left) near the Golden Gate Bridge 1990.

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My big sis and me (Early 90’s) on the waters of Lake Canandaigua, NY. I believe this shot by Bruce Brannon won an award at Kodak where he worked.

CHAPTER 2

MOSQUITO BITES

My mom hadn’t planned on having two kids off at college and a new child to rear. I was a surprise souvenir from a trip to Europe that my family had taken to celebrate Brother Joel’s bar mitzvah. When they left that summer they were a family of four but they returned six weeks later as a soon-to-be family of five.

Within weeks of their return my mom’s tennis skirts began to reveal her state to her tennis pals and even the grocery store clerk could tell my mom’s normally svelte figure had taken some kind of turn. Pregnant at 40 in the early 1970’s was not a common occurrence. My mom, sensitive to this fact, tried to hide her burgeoning belly under muumuus—but didn’t fool anyone.

A newspaper clipping announced my arrival. The story detailed Pop’s campaign to become the Town Councilman of our little suburb of Los Altos Hills. The headline, Kubby’s Baby Due to Arrive on Election Day, was accompanied by a picture of Mom, Pop, Lisa and Joel, gathered around the piano, my mom hiding in the back row so you can only see her face and wonderful updo. Showing the world she was pregnant was not part of the glamour Mom imagined in her life.

Despite our non-traditional family structure, my parents always made sure to remind me that I was the best mistake they ever made. And I never doubted it.

Since my siblings were both out of the house by the time I was 4, I grew up like an only child. I would wake up in the morning and toddle into my parents’ room to find Mom doing exercises on a worn-out bath towel laid on top of the aqua blue carpet. Cat-cow, warrior, triangle pose. Mom didn’t give her movements these names, but she was doing her Asanas long before it was cool to do yoga.

My early youth was spent as my mom’s sidekick, running errands and accompanying her at her random jobs of teaching water aerobics at Lydia’s health spa in downtown Los Altos and English as a Second Language to Spanish students at a local adult school. Occasionally mom would slip a frozen yogurt lunch into our plans and then I really didn’t mind being her entourage.

In some cases I even enjoyed the errands—like this one to Loehman’s clothing store. I loved so many details of that place, from the smell of fresh fabric, the communal dressing area, and especially the mint they gave me when my mom made a purchase, which she often did.

I sat in my usual spot on the stiff pea green couch at the edge of the store waiting while my mom rushed up and down the aisles, sifting through the racks of size 6 Petite pants, dresses and blouses. Streams of women wove in and out of the aisles of clothes, their baskets a tangle of fabric and hangers. My mom’s cart was equally as full, which meant I would get my mint.

Let’s go to the dressing room, she said and I eagerly jumped up. Loehman’s didn’t have individual stalls for changing, but rather a big open rectangle, rimmed with a bench, and a few hooks for discarded items. Women of all shapes, sizes and colors surrounded me. It was better than the zoo.

Sitting on the bench, my line of vision was exactly even with everyone’s backside. From there among the cast-off outfits—too small, wrong fabric, terrible colors—I watched each woman try on clothing. A tall 30ish young lady in the far corner slipped on a red evening dress and twirled like a schoolgirl, examining the spin the bottom of the dress made around her slender legs. Another woman, a bit older and pear shaped, repeatedly tucked and untucked the silk blouse she was trying on, seemingly unsatisfied with both options.

Turning my gaze back to my mom I expected to find her in some gaudy printed blouse but instead found her in only her bra and underwear, pulling a one-piece swimsuit up her legs. Her bra was relatively plain–white, with a dash of lace across the bodice. It appeared much pointier and had a fabric than I imagined was comfortable.

I was used to seeing my mom in her bra. She even slept in one every night claiming it felt more relaxing that way. But then she began fumbling with the latches at her back and before I could look away, her bra fell from her chest and there they were. They looked like firm peaches with a gentle hang. I could see having breasts likes those. It was her nipples that really surprised me. They were huge, the size and shape of mini-marshmallows.

My gaze locked on those things for a moment, but aware that I didn’t want to get caught gawking at my mom’s naked breasts, I turned away and was drawn to my own reflection in the mirror.

Cocking my head to the right and pulling at the base of my shirt, I wiggled side-to-side, trying to find a definition to my hips like my mom’s or a bit of a mound under my shirt. But try as hard as I might, there were no curves.

Everything was flat. Flat as a freshly ironed shirt.

Soon enough my horizon began to lift and I found myself the proud owner of what I liked to call my mosquito bites. I was still mostly flat-chested, but my nipples had begun to protrude and poke into my t-shirts. Clearly I was not the only one who noticed this because one day my mom showed up at school to pick me up and declared, We’re going bra shopping, as I climbed into our station wagon.

Driving into downtown Los Altos she parked on the block filled with all of my favorite shops. Mom must have read my mind about wanting to stop into a few of them because she said, We’re low on time Boo Boo, so we need to go straight to the clothing store.

I got a chuckle out of the fact that my mom had called me Boo Boo while we were on our way to buy me a bra.

I hung back close to the door, by the rack for the Ocean Pacific shorts, while Mom walked to the front and questioned a gray-haired clerk about the best training bra for me. I pretended to be very interested in a pair of blue corduroy shorts while straining my neck trying to make out the conversation they were having.

Perhaps one soft on the breast buds, the saleswoman suggested to my mom.

The words seemed especially awkward coming from this woman who looked more like she should work in a library than a kid’s store. And then it got worse.

It will cover her protrusions when she wears a blouse.

Ugh. I wanted to leave—immediately, but my mom caught my eye and gave me a little wave, which I knew meant I should join them. I quickly scanned the space to make sure there wasn’t anyone in the store that I recognized and then made my way over to where they stood looking over the boxes my mom was holding. Not wanting to exchange any words with them, I quickly grabbed the packages out of my mom’s hands, tucked them deep into my armpit, and hastily ducked into the closest changing room.

Pulling the first bra out of the box and placing the straps over my shoulders, I fumbled with the hooks, unable to reach far enough around my back to close the darn thing. I recalled seeing my mom put her bra on by first latching it around her waist, spinning it around and then pulling it up to cover her chest. Seemed like a lot of effort to me, so I just did it the most logical way and wrapped my arms toward the back latch and fumbled with it until it caught.

Looking into the mirror I could barely stand to look at myself with the bra on, so I didn’t try the other two. Instead I just picked the one with the least girly box, left the dressing room, and shoved it at my mom.

I’ll be at the store across the way I told her, barely getting the words out before careening out the door and across the street to The Cranberry Scoop. The rows and rows of colorful Jelly Bellies and reams of collectable stickers were the salvation of my pride and a return for the moment to my life before boobies.

My breasts were not the only part of me going through some shifts; it seemed my nether regions below my waist had developed a new enemy: menstrual cramps. In horrific form, my so-called friend arrived while I was on a trip visiting