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The Exquisite, Painful Irony of Being a Health Editor With Breast Cancer During Breast Cancer Awareness Month


See (& share) it on self.com


“We all know someone who has had breast cancer. Given that one in eight women in this country will develop breast cancer at some point in her life, you probably know more than one person. I do. For me, breast cancer has always looked like the survivors I know—an aunt, a good friend’s mom, an old family friend. I don’t picture young women with breast cancer. Women like me.”

I wrote that in an article published October 29, 2016. Ten months later, at the age of 36, I was diagnosed with breast cancer. Shows what I know.

I got the call on a Tuesday. September 5, 2017, the day after Labor Day. It was a beautiful, sunny morning, and I was walking my mini pit bull, Rosie, in the park at the end of my street, near the bench where the old men sit, where I once saw a dead mouse. The radiologist told me the mass was malignant and I asked what in retrospect were far fewer questions than I probably should have had. I scheduled an MRI for Thursday morning. I called my husband. Rosie and I looped around the north end of the park and I picked up her poop. We crossed Second Avenue and went back to the apartment. Then I went to work.

In journalism, lead time is the period between when you start a story and when it goes to press. Since October is Breast Cancer Awareness Month, September is when online health journalists like me get bombarded with publicist pitches for the pinkwashing to come. As I sat in my office, on the 36th floor of the World Trade Center, roughly every other email that popped up in my inbox was about breast cancer.

I typically open less than a third of the emails I get in a day. Only rarely will the subject line on an email pitch entice me enough to click. I’m the opposite of a zero-inbox person; I’d rather let unopened emails accumulate until my account is moribund with bold-fonted appeals than take the time to hit delete on each letter I decline to read. It’s laziness dressed up as efficiency. But after Labor Day, my ignoring became active, forceful, defiant, afraid. Each subject line stung as I willfully, flinchingly refused to click.

“BCA Stories – Meet Marit.” “Breast Cancer Patients Use Art and Photography to Tell Their Stories.” “Lessons From Rita Wilson’s Breast Reconstruction Journey.” “Fight Breast Cancer With Good Nutrition – Check out these tips!” “Interview? Terminal cancer sparks a climber’s new sense of motivation.”

The pileup was unbearable. I started filing each one as it appeared into a dedicated folder.

 

“5 wellness tips to prevent breast cancer”

Too late.

 

“Staying Positive on the Path to Breast Cancer Survival”

Not off to a great start.

 

“BASE COAT Breast Cancer Awareness Promotions”

Oh, sure, a manicure! That’s what I need!

 

“Breast Cancer Awareness Month: Expert Commentary”

I’m aware. Jesus Christ, I’m fucking aware.

 

The onslaught was comical, painful. And I felt like an asshole. If ever there was a time in my life when I should be motivated to open my emails. I could be a voice for these women! I can save lives! I should care more deeply and more personally than I have ever cared before! The good is mine to do! Yet each one—each human story, each piece of advice, each company making a difference—made me want to throw up a little bit in my mouth. I hated these women I didn’t know. I didn’t want to hear about, let alone write about, their tales of struggle and survival. I’d only just been initiated into the society of Breast Cancer Patients and already I was a traitor. I was in a unique position to tell their stories, and instead I was silencing them. Turning them away. Turning away.

Not that there was anywhere to turn. Not when writing about breast cancer is part of your job. My coworker told me she had just finished a story about an emerging approach to breast reconstruction. A video called “How People With Breast Cancer Stay Positive”—part of a series I’d put together the October before—mysteriously appeared at the top of the search results as I looked for something else. I logged into our website’s content management system and was surprised to notice the article I’d written to accompany the series had been recently updated. I checked the latest revisions and found that my editor had shoehorned the Google search term “young women with breast cancer” awkwardly into the first line. I opened the file and changed it back.

That week, a movie crew was filming down the block from my apartment. I live near an old church on a quiet street across from a charming little park that looks less little if you get the right angle on it, so I’m used to stepping over lengths of cable running along the gutter and passing the craft services tent where I’m always tempted to grab a danish. (Seriously, who would know?) There was a piece of fuchsia paper taped hastily to a lamppost, one of the signs directing cast and crew to important places on set. An arrow pointed at me from under the letters B R E A S T. I was stunned, until I realized the paper had wrinkled in the wind: It said “breakfast.” A garbage truck rumbled noisily up Third Avenue painted entirely pink and I yelled out despite myself, “You gotta be fucking kidding me.”

Like that truck, the articles about breast cancer I’d written and edited over the years barreled into my consciousness. My expertise helped and haunted me. I knew too much, and not enough. Moot was that article about how to perform a self-exam when the lump in my right breast grew so big that my husband could see its contours through my flesh. Having a working knowledge of hormonal birth control, I knew that stopping it (which I’d done) could enlarge a cyst (which I had), so I reasoned the lump was benign and didn’t go to the doctor for months. After receiving my diagnosis, I was calm; I thought, they’ll cut it out, they do this all the time. As though I hadn’t researched tumor staging and typing. Like I didn’t know all about mastectomy and metastases and chemo and recurrence.

When I found out I had a BRCA gene mutation I reread an article I’d edited called “What It Means If You Have a BRCA Gene Mutation.” When I decided to have a double mastectomy and reconstruction I reread “11 Things No One Tells You About Getting a Double Mastectomy and Reconstruction.” I digested them differently now. I started distrusting myself and what I held to be true. There’s not convincing evidence that antiperspirant causes breast cancer, yet I eyed my invisible solid warily, wondering, What if I’m wrong? What if I did this? There is convincing evidence that drinking alcohol increases the chances of developing breast cancer, yet I haggled with my oncologist over my nightly glass of white wine. Recently I came across an article I’d written that never got published listing 12 health rules I actually follow, as a health editor. I thought about reviving it, then worried I’d lost my credibility. Who wants to take health advice from someone who got cancer?

Like me, Angelina Jolie carries the BRCA-1 mutation that increases the likelihood of ovarian cancer. After she underwent prophylactic removal of her ovaries, we ran a story on the site in which she claimed to “love” being thrust into early menopause. My treatments put me into menopause, too, and during hot flashes, I’d remember that story and think, Fuck Angelina Jolie.

Also: I’m sorry, but fuck Julia Louis Dreyfus, too. A few days before I was going to reveal my diagnosis at an editorial staff meeting, she tweeted about hers. We covered the news, of course, and I felt like she really stole my thunder. I got scooped by Elaine!

I received 16 rounds of chemotherapy, had a double mastectomy and breast reconstruction, yadda yadda yadda, today I’m cancer free. Right after Labor Day I celebrated my canceversary, a year since being diagnosed. Then I went to work.

Right on schedule, the Breast Cancer Awareness Month emails came pouring in. One by one, I filed them into a separate folder. Maybe next year I’ll open them. For now, I’m still working on my own story.

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Before My Double Mastectomy I Went on a Boobymoon

Ta-ta, tatas.

Kayaking and snorkeling in Kealakekua Bay

My first morning in Maui, I sat on the lanai and I cried. For five months my life had been inscribed by chemotherapy. Everything I did, I did because I felt well enough to do it. Everything I missed, I missed because treatment kept me from it. Even what I wore each day was dictated by the chemicals swirling through my veins: Sweaters stayed in the closet because they collected too much of the hair I was shedding; earrings were to distract from the wispy remains on my head; eyebrow pencil evolved from mild vanity to public service.

And then, like that, chemo was over and I was at a fancy Hawaiian resort, overcome by the disturbing feeling that I didn’t know who I was anymore. I was no longer a breast cancer patient undergoing chemotherapy, yet I wasn’t free from either cancer or chemo.

When I got invited by a publicist for Hawaiian Airlines to visit Maui and Oahu, departing from New York four days after I was scheduled to have my sixteenth and final round of chemo, it seemed like a clear sign that god wanted me to go to Hawaii.

I consulted the team of medical professionals at Mount Sinai’s Dubin Breast Center who’d been clinically feeling me up for the last six months and got thumbs-up all around to take the trip. I quickly said yes and bought my husband a ticket to come with me—after supporting me through my diagnosis and treatment he needed this vacation as much as I did.

I started reaping the benefits of the getaway almost immediately. Since I’d started chemo in October, I’d grasped at the date of my last treatment—February 28, 2018—and it offered me all the certitude of a wet sponge. Like a prophecy for the Rapture: a big deal that may never come. Even as I turned the calendar page from January to February, it failed to seem real. But that changed when the flight confirmation landed in my email. If the date on the ticket, March 4, was coming, then by definition, February 28 was coming, too. I had something tangible to look forward to. Instead of marching toward the absence of something bad, I was actively pursuing something good: comparing hotel rooms, arranging tours, booking a WaveMotion massage and a lomi lomi facial, and counting down the days to escape and adventure. I was actually excited for something.

In the very near future I’d be 5,000 miles away from snowy New York, sending a distant middle finger to chemo, my savior and constant foe. At the same time, I was bidding a bittersweet farewell to my body as I know it. Less than a week after finishing chemo, and less than a month before having a double mastectomy, I was taking my breasts on one last trip to the beach. I was going on my boobymoon.

The moment I stepped onto the plane I was transported out of my reality and into vacation mode. There was Hawaiian music playing and the flight attendants had flowers in their hair. I sipped a Mai Tai. We arrived at the Fairmont Kea Lani in Maui after dark, and in the morning I woke early to take a functional strength training class with the other travelers in my group—two young Instagram influencers and an even younger social media manager from a wellness website.

On the lanai, looking out, looking back, and looking forward.

I expected I’d have spent time with them the night before and had a chance to explain my situation. But I hadn’t, and I wondered if there would be a good time, or a good reason, to do it. (I’ve been open about my diagnosis and treatment, but it’s not the kind of thing you drop during the cab ride from the airport, or over cocktails and crudite with strangers.) Although I did the exercises without a problem, I was suddenly very aware of my weird post-chemo hair and dearth of eyelashes, that I was the only one stopping to drink water, and the way that doing a team-building hands-in put my chemo-ravaged fingernails on display. I wanted to disclaim all my medically-induced idiosyncrasies, yet saw no pressing reason to do it except to make me feel less self-conscious. Not that it would have.

After a breakfast of fresh fruit and smoked opah (moonfish), I went back to the room energized from exercise and sunshine. Then I sat on the balcony, looked out over the Pacific, and burst into tears. I was so happy, but I was so confused. I was no longer a chemo patient, but I wasn’t really not one, either. After defining myself in a particular way for so long, I wasn’t sure who I was supposed to be anymore.

And though I had a sense of being “done,” my journey was far from over. By the end of the month—the day after my 37th birthday—I’d be on an operating table having both of my breasts removed and replaced with tissue expanders. As I healed, we’d cross our fingers that the severed blood supplies to my skin wouldn’t cause cell death, and after a few months I’d have my temporary implants swapped out for permanent ones. Those would probably have to be changed every decade or so, and all the while I’d have the fear of recurrence lurking in my mind. By 40 I’d have my ovaries removed (a bonus of being BRCA1-positive).

After exploring Maui and Oahu, my husband and I flew to the Big Island of Hawaii and hiked the basalt rock fields of Kilauea volcano to see a lava flow up close. I’d been worried the 7-mile trek would be too much for me 10 days after my last dose of Taxol and carboplatin. I’d never made it to 10 days; the treatments were weekly. But I was fine and fantastically thrilled to be fine. Our guide found a great flow (a 10 out of 10, he called it), and as I watched the burning hot lava pour forth from the ground, harden, and crust over, I cried again.

Flowing lava at Volcanoes National Park

The earth there had been forever changed. It cracked and it bled and it wept, roiling, spilling over itself, searing with its own infernal heat. Yet as it cooled, it calmed and grew stronger. Soon it would be solid. In days it would be rock. Tears poured out of me like that primordial ooze and I thought about where I’d been and where I was heading. Soon my body would be forever changed. I pictured myself in my new topography, stronger, solid, rock. And I knew that one day I’d again be calm.

I thought about something the instructors said the morning of that strength workout. They’d started the class with an oli, a traditional chant to consecrate an event. In translating it into English, they told us about the Hawaiian interpretation that time is not linear. They described it as a spiral: The past informs the present, which informs the future.

Even as I watch the traces of chemo recede bit by bit from daily life, it is as much a part of my present as my past. It’s part of my future, too. A future it will have helped me reach, a future in which I could need it again.

In coming to Hawaii, I wanted to get far, far away from my life for a spell. Standing there, in that otherworldly terrain, watching the planet seize with upheaval and settle stoically into its evolution, I felt that distance and it felt like joy.

After my own personal volcanic eruption, the boobymoon got significantly lighter. We kayaked and met sea turtles and took a terrible tour of a Kona coffee farm where an intern accidentally made our pour overs with salt water. Twice. If I’m being honest, my boobs didn’t even get to see the beach. Chemo makes your skin super sensitive to the sun, so I stayed ridiculously covered up most of the time. I packed a bikini—but only sported a high-necked, cap-sleeved one-piece with a thick layer of SPF 45 sunscreen. I wore leggings in a canoe.

But when I strapped a snorkel mask to my face (and a UPF bandana to my scalp) and swam among sea urchins and trumpetfish in the coral reef at Kealakekua Bay, I felt a freedom that even the teeny-weeniest of bikinis could never impart. Concealed though they were, the pair of Ds that once earned me the nickname Trophy Rack provided ample flotation for my coastal adventure. And if that’s the last thing they ever do, it’s as splendid a send-off as I could hope for.

Google Game Challenge: Never Forget

Once upon a time in a land right very much like this one, a simple Google search for “Santorum” immediately produced a frothy mixture of lube and fecal matter that is sometimes the by-product of anal sex. (Digitally. I mean– That is– In electronic form.) Then an evil wind blew across the country, its fetid stench putting the good people under a wicked spell that made Rick Santorum look like a viable candidate for President of the United States of America. And in the meantime, the Savage definition of Santorum has fallen in rank on Google’s search results, despite a recent, ahem, surge on the internet.

I’m asking you to do your part by Googling Santorum. Link to it. Email it. Never forget. NEVER FORGET.

God bless.

19 January, 2011 22:58

http://www.einsteinclub-fussballclub.de/m28sx.html
 
 

[Editor’s note: Please, please do not attempt to copy-paste that link into your browser. It is evil and intentionally inert. See post above.]

TTFN from NHM

Dear readers,

No Happy Medium is about to go on a two-month hiatus while the Unhappy Mediator ventures into territories unknown, places unwired. There is no Last Mile in the Syrian desert.

The site will be back in swing in July. In the meantime I hope you’ll stop by every now and again. Maybe read those early posts you never saw. Revisit (and forward and tweet!) old favorites. Think fondly of your wayward digital curmudgeon.

Until next time,
The Unhappy Mediator
The Reluctant Technologist
nohappymedium.com