The Things We Give: Breastfeeding, BRCA, and the Burden of Decision-Making

“Breastfeeding is an investment in health, not just a lifestyle decision. Benefits for infants: Reduced risks of asthma, obesity, type 1 diabetes, ear infections, SIDS, gastrointestinal infections.” (CDC)

Weakness, fatigue, hair-loss.  

“What was it like?” I asked Dad, decades later.

Cracked nails, bruising, dry mouth.

He described your loss of appetite. Your white knuckles on the splintering railing as you leaned over the hydrangeas, vomiting remnants of the grape popsicle you’d managed to stomach an hour before.  How he held back your hair, and after you were done you shot him a weak smile. “Sorry about the flowers,” you said. “Look. Gross. They’re purple.”

Mouth sores, itchy fingers with skin clinging like strings of clementine pith. 

Loss of short term memory, hallucinations. 

“Get him out,” you mumbled. 

“Who?” Dad said.

“My father.” 

“He’s not here, Honey, he’s in Florida.” 

“Good, he doesn’t need to go through this again. Ma was enough.” 

“I shouldn’t have had Leila. Of all the things to give her. What kind of legacy is this?”  

“I’m more worried about the kids than I am about you or me,” you told him, “how can this not screw them up?” 

Loss of consciousness. 

Slackening heartbeat. 

Silence.

_____________

Angelina Jolie became spokeswoman of preventative measures in 2013. “The decision to have a mastectomy was not easy.” She knew the risks of not getting the surgery – she had a gaggle of kids, a (seemingly) loving husband. A career, fame, and what Vanity Fair said was “the most beautiful face in the world”.  The loss of her curved breasts, notable even under those rounded cheekbones, must have hardly seemed like a loss considering what she spared her family, what she spared herself. 

_____________

“Compared with formula, the nutrients in breastmilk are better absorbed and used by your baby…” (John Hopkins Medicine)

The roll of thin paper crumpled and then ripped under my back as I pushed myself up in the bed at the SOMA Women’s Health Center. Why put on that stupid gown, I wondered, when the minute the radiologist entered she told me to get undressed. The warmth of the shadowy room was a pleasant contrast to the air-conditioned corridor on the other side of the door. Though undressed from the hips up, I was at ease.  

“So,” she said in her Russian accent, “when are you getting the surgery?” She moved the gel-covered transducer over my right breast in rhythmic strokes. 

“I’m not sure.” 

“Stop moving.”

“Sorry.”

“Lift your hand over your head.”

“Yes Ma’m.”

“Don’t Ma’m me,” she snorted. “You’re not in Kansas anymore.”

“Massachusetts.”

“Whatever, welcome to Israel. Why not sure?”

“Maybe we’ll have a third kid.”

“So?”

“So, maybe I should wait,” I said.

“Why?”

“Why should I have another kid if I can’t provide the basics?”

“Switch hands.”

“What?”

“Nu, right hand down, left up.” 

The sudden squirt of warm gel made me jump. 

“What’re you so nervous about?”

“I’m not nervous.”

“Well, maybe you should be. This won’t affect your ability to get pregnant or care for another child. Formula’s just fine. Your kids need you around, healthy. It’s time.”

_____________

One in eight U.S. women develop breast cancer at some point. Women carrying the BRCA mutation face an alarming 72% risk.  One in 40 Jewish Ashkenazi women are carriers. One in 400 women in the general population are carriers. All of the women treated at SOMA are BRCA carriers. They visit the health clinic every six months.  They pass Aroma Café and squeeze into the crowded hospital elevator.  They peek at pale parents holding pudgy hands getting off on the sixth floor, the fatigued and balding continuing treatment on seven, the vending machine man with a cart of Coke bottles and potato chips on eight. The BRCA carriers smile as he nods his head to the music playing in his headphones. They exit on the ninth floor and turn right towards a green swinging door. Upon entering there are two receptionists, and the carriers learn quickly that it’s best to get the brunette closest to the door. They tell her they’re there for SOMA; she prints their stickers.

__________________

“Breastfed babies perform better on intelligence tests…Women who breastfeed also have reduced risk of breast and ovarian cancers.” (World Health Organization)

It took Dad a long time to touch your side of the dresser, the closet, the vanity. Then, in a moment of frenzy, he dumped everything onto the faded blue comforter on the bed. He began sorting. Your t-shirts and jean skirts and silver-framed glasses and a reel of violet yarn. The wooden hairbrush missing a fourth of its bristles, the solemn-faced porcelain doll, a worn copy of “Eragon”. A black-and-white photograph of your long-lost mother, with a pre-school you clinging to her legs. Some bills, a hand-made card, a velvet earring box. It was empty. So was the orange pill box labeled “Tamoxifen” with your name printed in small letters, a rumpled “The King and I” script with Anna’s lines highlighted. Dad lasted twenty minutes before giving up. For the next month he slept on the maroon Lazy-Boy downstairs, the buzz of late-night TV chasing his nightmares away as your belongings collected dust on the bed.

At some point, it happened. Piles for the trash, piles for the Salvation Army.  Cardboard boxes lugged down to the basement. Dad tucked many things back into your drawers mumbling that he didn’t have enough to fill all of the empty spaces on his own. He folded your favorite skirts, reorganized your jewelry box. Your cracked, yellow flip-flops remained on the floor of the closet, a size 9 casually buried among his much larger loafers and sneakers. 

I’d sneak into the room to touch the different fabrics, try on the bracelets. I even dared take a silver ring with a small, shiny heart back to my room.

Then, one day, the thrill of discovering your prosthetics. I was a pre-teen, already intrigued by my older friends’ budding breasts. I pulled one out of the bag and sat on the bed.   

I turned it over in my hand, rubbing my finger along the soft satin. I squeezed my fist and felt it bulge through my clenched fingers. I squinted at the little bump protruding from the middle. My eyes widened.

“It’s….a boob!”

I ran to shut the door. Standing before your full length mirror, I pulled up my shirt, then held the prosthetics over my flat chest.  I tugged my shirt down and let go. The prosthetics fell to the floor. I was surprised they didn’t bounce. 

I tried again, determined. After placing them on my chest, I arched my shoulders back and pushed my stomach forward, like I was preparing to fall back into the bridge I’d been practicing in the backyard.  This time I removed my hands slowly. The satin boobs remained where they were. Inch by inch, I pulled my shirt down until it touched the top of my jeans. I looked at myself in the mirror.

“Whoa…” I couldn’t tear my eyes away from my womanly frame.

I straightened in excitement causing the prosthetics to again fall through the bottom of my shirt to the wooden floor with a gentle thump. Eyes still glued on the mirror, I peered at my familiar, flat form and my stomach clenched; my face burned. 

I kicked the prosthetic closest to me under the dresser.

______________

Not all doctors promote preventative surgery. After all, they explain to their BRCA patients, if you are strict about your screenings, we almost always catch it early. You have self-checks and doctors’ manual checks, you have breast ultrasounds, mammograms, and MRI screening. The question then is risk management – your chances for developing breast cancer are high, shockingly high, but not 100%. You can roll the dice and hope you’re among the lucky ones. And when, sorry, if, you do develop cancer, we’ll catch it early and pop you into the chemo line. Are you willing to be sick? How old was your mother when she was diagnosed? Are you willing to go through what she went through when there was less preventative care? How old was your grandmother? 

Or, they say, go for it. Check your insurance, choose your doctors. You are lucky to be born at a time of medical advances. Take your perfectly healthy body, chop-chop, and you exponentially lower your chances of becoming ill. In the long game, cut your losses early. There are many options for reconstruction, they’ll continue. You can go flat, of course – the simplest surgery. Some women get prosthetics. Or undergo reconstruction – silicone implants are most straightforward. Recalls are really quite rare. There is also the more natural DIEP flap. The surgeon will remove fat from your abdomen, thighs, or perhaps your lower back – those are completely you. They will even grow and shrink as your weight fluctuates, just like real breasts. 

You’ll need someone to help at home. Your husband’s mother? Move your arms as little as possible. No lifting for a month, no, not even the toddler. And once past this, we should talk about your ovaries – talk about a ticking time bomb.  The screening is much less reliable than breast screening. Are you planning on having more kids?

______________

“There is almost nothing you can do for your child in his whole life that will affect him both emotionally and physically as profoundly as breastfeeding.” (La Leche League website)

I pulled my shirt over my head and unclasped my bra. My nipples stiffened in the chilly air.

“They’re perfect,” he said.

I had to stop myself from crossing my arms over my chest. I wondered how he’d react if I responded, “Hey, Man, eyes up here.”

“Exactly the right size and shape.”

“Um…good?”

“Perfect candidates.” 

I stared back at his chest to avoid his eyes. His smile beamed from the laminated nametag attached to his shirt pocket with “Dr. Cohen” scrawled at the bottom.

“I’m going to measure you now,” he said.

I wished I was lying on an examination bed, despite the vulnerability of reclining, undressed, in front of a new, male doctor.  

He stretched out his hand. I fought the urge to close my eyes.

“Do you want them bigger?”

“What?”

“Your breasts.” He slid the cool measuring tape over my skin. “We can order slightly larger implants.”

“Um, no.”

“They’re perfect candidates. Healthy, firm skin. Well positioned nipples.”

I swallowed. “Who knew?”

“You have very good chances of keeping them.”

“Sorry, who?”

“Your nipples! Keeping them allows me to preserve the natural breast shape. When the nipples are removed, the stitching is different, forming more rectangular breasts.” 

“Okay…” 

“Remember, the mastectomy will empty you out. Nipple sparing is just for the aesthetics. No more milk ducts. That’s the whole point. I’m just here for the clean-up, the art. To make them look as beautiful as possible.”

“Right.”

“So,” he said again. “Would you like them bigger?”  

__________

Undergoing a mastectomy is not without risk. With DIEP flap, there are extra dangers of infection. With implants, the possibility of rejection. There is the hovering threat of BII – breast implant illness – in which the foreign implants wreak havoc in the body, causing fatigue, muscle pain, poor memory and concentration, hair loss.  Many doctors claim this illness “isn’t real”, that the symptoms are psychosomatic. One advantage of suffering through chemo is that no one questions the legitimacy of your symptoms. There are risks of lowered self-image, libido, and estrangement from romantic partners. There is the added danger of a sudden mid-life crisis, after years of checks and fears and emergency screenings, a shocking expanse of time ahead of you. You’ve taken care of your problem. There is nothing holding you back. Go on, live fearlessly, accomplish unapologetically. Make something of yourself.  

_________

“Women who breastfeed their children longer exhibit more maternal sensitivity well past the infant and toddler years.” (American Psychological Association)

“It’s done,” I said.

I was not expecting an answer from you, Mom. Still, I scanned the dark hospital room, wondering if after such a huge event, you might make an exception. It was midnight. My breasts were wrapped and numbed, but I was completely awake. 

“You were a third, Mom. I am a third. My third is going to be different. She won’t get my milk. Imagine she crawls up me after they cut the cord. My first did that, magically held up her head, shaking it in crazy little spurts. She dragged herself up my chest, inch by inch. Her tiny pink body seemed capable of anything. She searched and found my nipple and dived in. But the next one? If she follows her instinct, what will she find? Nothing. A huge disappointment. The first thing she’ll learn is that she has a mother who can’t give her what she needs.”

I paused.

“But she’ll be different from us in other ways too, you know? Like, I’ll be there.”

Nothing.

“So it’s the right thing, right? Losing a battle, winning the war?”

You didn’t respond, continuing your decades’ long silence. I wanted to imagine the reassurance you should have been there to provide; I didn’t know how. 

So instead, I imagined my own daughter, the little girl who had crawled up my chest within minutes of being born and stayed glued there for the next six months until I weaned her to get back to “proper screening”. I pictured her thirty years into the future. I couldn’t see her face so I imagined her from behind; her long, narrow frame, her curly ponytail bouncing as she opens her results and breathes a sigh of relief. “Ema,” she’ll say to me, “I don’t have the gene.” Or, maybe, she will wake up after her surgery feeling the pressure of my hand and give a weak squeeze. “The surgery went well,” I’ll get to tell her. “You’re going to be fine. I’m right here – what do you need?”

And then, after envisioning being there with her, I could suddenly imagine you here with me. We’re not so different, after all. I conjured your hand’s weight on mine; your voice, which I’ve been told, was huskier than mine.

“Your children will thank you, Kiddo. They’ll never have to go through this motherless, like we did. You’ll be there for the milestones. You’re breaking the chain. I wish I could have done the same, for you.”