surgery, mutations, + imagined s'mores

Updated: Jan 18, 2018





1

This blog is probably similar to many others in at least one fundamental way. That is this. I’ll be telling you what’s going on in my life. There will be talk of hard stuff: my own surgeries, my mother’s illness, the roles I play as caretaker and patient, the frustrations of waiting rooms and doctor’s offices. But there will also be also be talk of books and readings and projects! There will be art, the brilliant words of others, creative prompts, thoughts on teaching, and conversations about genetic and cultural inheritance. Who knows what’s to come. I’ve got gadgets and gizmos aplenty. I’ve got whozits and whatzits galore.

I’ll share recommendations. I’ll talk about my love of dogs, (and most especially my dog), and probably a lot.


But for right now, because this is what happens to be going on right now, I will mostly write about recovering from my prophylactic double mastectomy.


What is going on in my life is anchored right now, I mean now now, to the immediate physical moment. Meaning: leaving my chair would require a fair amount of help, self-motivation, and grunting. This is something medical constraints can do. They can limit or anchor you to the immediate physical moment. Like many limitations, this one has its beauties and its frustrations.


In this immediate moment, I am grateful that my hands are steady and my arm muscles are working well, which allows me to type here and now.


In this immediate moment, both of my breasts are covered in bandages. One breast is not healing flawlessly, and it’s causing the doctors minor concern. One breast is just dandy, but still bandaged. It’s important to keep the wounds moist. Together, gauze, aquafor, bacitracin, and my mother’s tireless help do the job.


(I’ll talk about my mother often, I'm certain. She's a woman who is fierce and gentle and taking care of me now after just having finished a full regimen of vicious chemo herself.)


I cannot feel them, my breasts. I’ve been told by doctors that I may not feel them for a long time to come, if ever again at all. I have thought about this a lot, this possible loss. It’s one of the sacrifices I’m acutely aware of. It’s been a big discussion: with myself, with my partner, with the blank white page.


But I’m talking about the future now when I'm supposed to be here, with you, in the immediate moment. Let’s get back to it.



2

More about this immediate moment. Above breasts covered in bandages, I wear some dapper pajamas sent from well-loved cousins, The Steins. They are handsome, pinstriped, and button-down. I’m talking about the pajamas, but there’s no doubting some of the Stein family can be described that way too. ;) These button-down pajamas have been a strangely important part of my recovery. They’ve helped me discover something small but important about the body I live in now vs. the body I once lived in.


It may seem like a small thing, and it is, but it is also an important thing. Here’s my tiny epiphany. It is possible to live in a body in which I can wear button-down shirts that actually button! This is celebratory for me, a formerly large-chested woman! Do you understand how exciting this is? The top two buttons of shirts my size can be closed with no bosom peeking or bursting through. There’s no need to finagle a safety pin inside my shirt to squeeze and bind shirts closed. No trying and failing to contain what refuses to be contained. Even if it’s only during recovery, even if this seems laughable to those of you who've never wrestled with button-down shirts, this tiny change means my fashion choices are expanding. This calls lots of possibilities into question for me: possibilities I haven't worked through yet, possibilities that are still developing and gathering complexity.




But now, back to my immediate moment.


In this immediate moment, I am snuggled in a blanket at my parents' kitchen table in New Jersey, half hoping the WiFi will stick it out for me to finish this blog post, and half hoping not. You see, half of me wants to close this laptop and draw these beautiful orchids I see across the room, or else look out at the snow, which my dog is romping in and gobbling up now. Yes, I want to put down this computer and I want to look out at the snow and listen to its hush.


But I’ll stay here with you instead.


You may be here because we know each other personally, and you want to know what that wacky social media post about surgery was, what the hell’s been going on, why I told so few people about this surgery until it was already finished, how I’m recovering, etcetera, etcetera. You may also be here because you’re thinking of undergoing a double mastectomy, too, prophylactic or not, and you want to hear someone else’s story and you may have some questions. You may be here because you have a genetic mutation or love someone who does or because you simply like to learn what it is to live in someone else’s life, someone else’s body, which is what reading the perspectives of others gifts us. You may be here because

the weather outside is frightful

but the fire is so delightful

and there isn’t no place to go, so…

here’s a stranger with a new blog, and why not read it?

Whatever brings you here, I’m just glad you’ve arrived. Welcome.




3

So now I hope this WiFi does stick around, because I want to tell you a part of my recent story. I am clearing my throat and fidgeting with my hands before I begin. That’s because I am nervous. You know, I read in front of audiences often. I read what I write and publish my stories and I stand up in front of classrooms of students all the time. I tell my students that words give them a great power, an authority over themselves that no one will ever be able to take from them. I believe this wholly. But still I’m wondering whether to stop and save this as “Document19.docx” and forget it in a file somewhere in the depths of this computer, or whether to keep typing.


When I share stories, they’re fiction. I tend to write stories with a little magic, a little sci-fi, and at most, I'll splash a rare pinch of autobiographical detail here and there. As a rule, I usually don’t write stories from my own life. But recently that’s changed. And this is one story from my life that is very personal, very private. Something I’d usually keep between the covers of journals. But I’m putting it here for you.


There is, of course, one very big risk of sharing your story with others. The risk is that your story no longer belongs just to you. It’s no longer safe and sound and bundled in your knowing, coddling arms. People share their stories every day on social media, and while I think it is often very generous and admirable, I don’t share the instinct to do this. This risk, the risk of sharing your story with others, feels very vulnerable to me. Vulnerability is a brave act, and one I need to give time, consideration, and sometimes reconsideration (aka re-reading and editing).


I know it may not seem like much to you, when you receive the stories of others so often, updated second by second throughout our daily lives. But I will give you the story that I feel vulnerable telling, the story I’ve given the time, consideration, and reconsideration. It is a story about a person making a choice. It is a story without heroines or oracles or tantalizing devil figures or an evil king set out for vengeance.


This is the story of an ordinary girl who made a choice to remove body parts in exchange for her future health. (When I put it that way, it does sound a little sci-fi after all. Hm.) It is the story of my double mastectomy on December 22, 2017: a surgery I underwent because, as far as modern medicine can tell me, this sacrifice will decrease my chances of getting breast cancer from somewhere between 70-87% to less than half a percent. The barter system—boobs for a cancer-free life (fingers crossed)—is a tricky and cruel one, but for me, the worth of life outweighs the worth of boobs big-time.


4

Back to my hand-fidgeting. When someone gives you their story, you may do with it whatever you wish. In exchange, I only ask that you remember this. On a screen far away or perhaps very nearby, there was a person who wrote this. While she wrote this, there were bandages on her breasts and she needed another painkiller but couldn’t take one for awhile, not for a few more hours—but because her hands could move and because she wanted to share this with you, she wrote while wrapped in a blanket sitting at her parents' kitchen table. Curled under her feet was her dog, her sweet bearded mutt, and the person loved how the dog kept her feet warm.


That person is me. In exchange for my story, I ask only that you be kind. I know the Internet can be a mean, treacherous place. A middle school cafeteria turned up to eleven. Speak your truths. Challenge my ideas. You need not be nice, but please be kind.


We may not know each other well. We may not know each other at all. We may have some strange histories between us. Still, I care about you and your story. Though you can’t see me right now, though I do not know if you know me or care about me or my story, I offer it to you.


To those of you who’ve come this far, I thank you for your listening eyes and ears. To those of you who continue, I thank you for choosing to spend your time with me.


5

Here’s the thing. I wish we were telling these stories at a campfire. I wish we were sitting around in real life with rough wool blankets in our laps and marshmallows on sticks. I wish someone had an acoustic guitar or a banjo she could play. Maybe even a harp.

6

So let’s go there. Come with me. Take your seat. Slide on those gloves. Hear the crack and snap of the fire. The sound of living static. Inhale the tang of burning logs. The scrubbed clean scent of cold. Hear and savor the ditty of scattered laughter, friendly mutterings as people find their seats and put their palms to the fire. Melt a marshmallow. Now we’re ready. If ever you need to get up, cozy up to that cutie next to you, shift positions or come closer to the warmth, do as you please.


(That’s one of the joys of reading: such freedoms. You choose your own intermission, your own new seat. You don’t have to apologize or raise your hand to go to the bathroom.)


My hands are still. My voice is steady. The imagined harp-player-banjo-acoustic player fiddles her strings.


7

I was in my early twenties when I was diagnosed with the BRCA1 mutation. This is known by many as “the Angie gene.” Though I’m not a big follower of celebrity news, I do appreciate how open and honest and articulate Angelina Jolie has been about her choices in response to her diagnosis. Sometimes I do wonder about Ms. Jolie and how she feels about the public renaming this mutation after her: this mutation that has caused her strain, stress, and loss, now publicly referred to by her own name!


Sometimes I also wonder what the scientists who discovered this mutation feel about the mutation’s credit going to Ms. Jolie. All the years thousands of experts spent in laboratories, examining cell slides! Those countless hours squinting through microscope lenses! Each revelatory equation and perfect dissection, each epiphany that led to this knowledge of this genetic piece of DNA! And finally, after the reveal of this mutation, the discovery has been named after a celebrity who carried the burden these scientists have unearthed. Sounds to me like there's a story that could be called out of this somehow: maybe a little vengeance tale, a little rom com, a little Black Mirror?


(But really, thank you, Ms. Jolie, for sharing your very private experiences with people everywhere. And thank you to Mary Claire King and her team of researchers, for uncovering the information that led to such possibilities for us all.)


8


As a kid, even the game Operation terrified me. I tried and I tried, but I left poor red-nosed Cavity Sam uncured of his broken heart and still ailing with butterflies in the stomach. But my hands and the tweezers they held were too unsteady. The buzzer buzzed. His red nose shone. My bluff was called. This was a game with high stakes—a person’s life!, Cavity Sam’s life!—and I didn’t just feel like a failure at a board game, but at healing, at saving. I thought of his devastated family, poor Sam. I thought of how much it hurt to fall off my bike, then considered Sam, the patient I never cured, who had a wish bone stuck inside of him he’d never get to make a wish on. Way worse


So I’m not going to pretend to be a scientist, but I am going to tell you what I understand about the BRCA1 gene and the mutation of mine. I’m not a medical professional (and if you are and you see my research has led me astray, please do correct me) but I’ll tell you what I actually do humbly hope I understand about the subject at hand.


Please also see more links at the bottom of this post!


BRCA1 is a caretaker gene that is part of the DNA. It is a protector.

If a healthy BRCA gene notices a part of your DNA’s been damaged, that healthy BRCA gene swoops in like a superstar and does what it can to repair that damaged DNA. Somehow this rock-jawed heroic caretaker of a healthy BRCA gene keeps certain cancer cells from existing, spreading, growing, or some combo of the above.


My BRCA1 gene has a mutation, which means that it can't do its job properly, which means that if some part of my DNA is damaged, that damage goes unchecked and unrepaired. The resulting DNA damage very often leads to cancer (most specifically ovarian and breast cancer; though I know breast cancer and the BRCA1 mutation affect males too, in my personified imaginings of this mutation, I always think of it as a misogynist).


Here’s the thing. Everyone has a BRCA gene! You have one right now in your very body. Mine just happens to be unable to do its job. Yours may be great at its job! YI sure hope it is.


Numbers ground us, right? So here’s some grounding for the abstract info I just pied-you-to-the-face with.

  • · The average female’s likelihood of getting breast cancer in her lifetime falls between 10 and 12%. By contrast, the BRCA1 mutation makes (or made!) my chances of getting breast cancer somewhere between 70-87%.

  • The average person with ovary’s likelihood of developing ovarian cancer is less than 2% over the course of a lifetime. With the BRCA1 mutation, my chances fall somewhere between 35-70%.

There are other genetic mutations as well. Genetic cancer and disease research is expanding and deepening every day. It’s important. That’s part of the reason I’m here baring my story for you in the cold dark forest of the Internet, gathered around this campfire for warmth, hoping my voice might help someone else find the warmth too.


(Totally off-the-cuff, I do want to say this. While I’m not personally encouraged or empowered by lots of metaphors for illness out there (war, conquer, battle, etc), and while we can talk about that ‘til the cows come home or we read Susan Sontag’s Illness as Metaphor or I future-rant someday (if I continue this blogging endeavor), it’s very hard for someone who cares deeply about language to ignore that it’s my caretaker gene that’s mutated. It seems poetically unjust, somehow. But also, perhaps, an explanation of my failings at saving Cavity Sam?…)


9

There are many people with many stories of many sorts who can gather around this fire. This is not just about one particular mutation or one particular issue or one particular disease or hardship.


That’s the thing about friendly campfires. They may revitalize anyone looking for warmth.



10

Someone please pass me a stick to fire up another s'more. There’s nothing like a crisply-burnt marshmallow. Smush yourself together the gushiest of s’mores. Take a bite. You’ve got a little chocolate on your chin. Just there. Yep. You've got it.



11

I was in my early twenties when I had the test, when I walked into the genetic counselor’s office at an airport-sized hospital all my by lonesome. I noticed the grass in the little courtyard, the unusually plush trees, the sharp sunlight that whitewashed half the doctor’s desk. I’d walked the twenty-something blocks from my Soho office, all abuzz like a character just before a musical number. Zip-a-dee-doo-da! I had a half-day off from work! For something as simple as a little tidbit of information (do I have a genetic mutation? yes or no?), I had a doctor’s appointment, and for that doctor’s appointment, I had a free afternoon. I’d cheated the system, I thought! I’d earned myself an afternoon.


The genetic counselor welcomed me in, stood upon my entrance as if I were a queen, motioned properly to the chair across from her, and asked in a slight minor key, “So you’ve chosen to come by yourself?” It was not a judgment, but an observation: the first clue.


In her observation and its tone, she told me something. She told me that this, my coming alone, may or may not have been a deliberate, carefully-considered decision; but that in the next moments I would become a woman who would need to make deliberate, carefully-considered decisions about who would come with me to appointments in the future.


I sat, feeling not very queenly at all. “Yep,” I said. “It’s just me today.”


“You have the mutation,” she said. No pussyfooting here. “I’m so sorry, Rebecca. You have the mutation. The BRCA1 mutation. Not the BRCA2 also. Just 1.”


And she read me the papers, she told me my options, she consoled, she looked caring but not condescending. She put both hands on the desk, did not look at her computer for a long time, but at me: just me, just my face. I appreciated her kindness, but I didn’t understand it. Not yet.


This wasn’t a cancer diagnosis. This wasn’t doomsday. I was not in danger This was not a ruptured liver adenoma or ovarian cyst (both of which I’ve had: I’ll save those stories for later).


All I had was a little mutated gene that’d toss me some annoying days and experiences, and bada bing bada boom I’d move on and live my long, happy dog-filled, love-filled life.


12

Compartmentalizing works for some, I’ve found. It is and is not a talent of mine. I have grown better over the years. I have matured since that moment when I sat unlike a queen in the genetic counselor’s seat.


“You'll want to have an official consultation," she said. "You can do it now, or whenever you’re ready, sweetie." (Did she call me that, really? Or is it my memory, recasting her words with the kindness I remember?) "There’s really much more to do than you may expect." (I had no idea.) I'd need jot some things down. She wanted to know if I had paper and pen. Did I!


I’ve always carried notebooks. Since childhood, they’ve been my refuge. My place to store, to create, to seek, to find, to doodle, to hold tight to what I do not want to lose: ideas, observations, quotes, sketches, funny and sweet and absurd and awful things said.


Notebooks can be private sanctuaries amidst public places. They’re little fortresses when I need protecting. They’re forests when I need somewhere to wander. I’ve always felt this line of Sylvia Plath’s the way I feel the onrush of early spring: Everything glittered like blank paper.


There have been times in life when I’ve opened empty notebooks and I have felt replenished and cleansed in the way I imagine the religious might feel when stepping inside their houses of worship.


Now, in my private sanctuary, on the glittering blank paper waiting for beauty, for ideas, I was scribbling names of oncologists, ob-gyn oncologists, breast surgeons, dermatologists, special fertility doctors, if I was ready for—not yet, thank you.


13

Thinking about it now, I realize this must be a part of growing up: even the sacred spaces get crowded with to-do lists, with the daily labors required for life maintenance, which often becomes health-related. Since my visit to the genetic counselor, the backs of my creative notebooks have been crammed with questions for doctors, appointment times, radiology centers to call, particular symptoms to ask particular specialists, etc. etc. I try to keep these details in the back, out of the way.


So maybe these notebooks are no longer hallowed in the same way. Maybe they’re no longer pure. But maybe there’s something to be learned in the fact that the medical to-dos have encroached on these artistic spaces. Maybe this serves as a necessary reminder that the ideas and thoughts and creations that nourish and give purpose to my life require not just the health of the mind but also of the body.


14

But back to that other immediate moment in that other chair. Back to that gentle, true apology from the dear genetic counselor, a genius in science but in tenderness, too, in recognition of the human whole. In her eyes I saw some concern and some respect, depending on the slant of light. I imagine now that maybe the dynamic look was a sort of unasked question she had not about my genetics, but about me. Was I a woman who came to this appointment alone because I was strong or because I was naïve?


15

Here is the closest to an answer I can come.


I was 23 or 24. The genetic counselor had told me of the surgeries I might have to undergo, the mud-covered road ahead. But I was not overwhelmed. I was not pained. After the appointment, I walked through StuyTown mid-afternoon and I watched people play basketball and tennis, or else maybe I watched the empty courts, imagined the sounds of people playing there.


I looked for a long time at the giant springy playground frog. In the Brighton Beach playground of my childhood, a place I went with my grandparents often, I’d adored bouncing back and forth, back and forth on that very same frog (or a different model of the same frog, who happens to look very worried: about what, I wonder?).





I picked up the phone to call my grandma, to tell her about the springy frog and maybe about the mutation result too—but she was no longer alive. And so I took in the sky and the trees and the buildings. Sometimes I remember the branches bare. Sometimes I remember them green, green, painfully green. Everything popped with color, with outline, with meaning. Everything was radically alive. Even the dead. The air was chilly, but a few devoted birds cooed and babbled. Or else the air was warm, and countless birds gossiped all about what they’d seen that morning on First Avenue. I don’t remember. But I do remember this.


I lay on a bench. All was calm and pulsing, vivacious. I felt almost like I’d just done some excellent yoga. I felt centered. A strange phrase: centered within what? What perfect hem surrounded the center that I was supposed to be?


I guess I mean to say I felt like I was in the middle of something, the middle of a space where I belonged. I was in my body. My first and final home. I felt the bench planks against my butt, my upper back, my head, my thighs, my palms.


It had taken thousands of providers for the information to reach me that day. It had taken initial discoveries which had led to new discoveries which had led to this one. It had taken the captivated minds and bodies of scientists and schedulers and staffers and nurses and patients and caretakers. Generations and generations of people had died because of illness caused by this mutation; I had seen my own mother suffer and survive these cancers herself.


It was because of my genetic counselor's devotion and my mother's history that my DNA was translated to me that day, but it was also because of these countless strangers. It was also because of countless unknown explorers that my body was able to tell me something vital about itself that day.


I thought of these strangers, and I think of them now: as I empty my drains; as I raise and lower my elbows or slowly roll my shoulders to to gain back my range of motion (I just love that one of these exercises is called Making Wings); as I write now, the sunset peeking over my laptop screen.


I thought of them in that immediate moment on that bench in StuyTown, and I think of them in this immediate moment at my parents' kitchen table. I'll think of them in many immediate moments to come. After all, they may be the very reason I have the opportunity to live some of these moments at all.


The air smelled that day the way it smells today. Cold. So cold it might clean me out if I let it.




#hasbro #butterfliesinthestomach #operationthegame #brca #brca1 #brcasisterhood #previvor #genetics #storytelling #howdoiusehashtagsisthisright #dogs #geneticmutations #themoment #nyulangone #health #prophylactic #surgery #recovery #campfires #smores #letitsnow #healing #angelinajolie #maryclaireking #istilldontknowifthisishowhashtagswork


Links:

CDC Hereditary Breast & Ovarian Cancer

Cancer.gov