HER-2: an ongoing series

To Share Or Not To Share…

@valentinadeluca

Alison:

In our class this week, I showed two photos that were taken down by social media companies in the last year for violating terms of service. One was a photo of a woman giving birth posted to a private Facebook group. The other was a photo posted on Instagram that revealed a menstrual blood stain on a woman’s pants and bedding. I showed these photos to talk about sharing on social media. Why did these women share? What were they trying to say with the photos? And, why did Facebook and Instagram remove them from view?

Photos: Leonardo Mayorga / Rupi Kaur

These are all questions worthy of class discussion and debate about the participatory culture of Web 2.0, about the somewhat arbitrary policies on social media platforms, about visibly showing something that may cause discomfort, and about the policing of women’s bodies. They are also questions I’ve been thinking a lot about since that dreaded mammogram when my life was turned upside down…and I decided to share and make my own experience visible.

The sharing started unexpectedly and unobtrusively during that initial mammogram. As I waited for the doctor, I was texting with two friends about summer camps and tax identification numbers, joking about the unlikely and unpleasant combination — mammograms and taxes. The joking quickly shifted to shock as I shared news that the doctor saw something suspicious, and that I needed to undergo an immediate needle biopsy. The following day, before I even had the biopsy results, I called Judy to share the non-news-that-soon-became-news about my cancer diagnosis. She had already been through the cancer hazing — lumpectomy followed by radiation — and I needed to talk it out.

I’ve always been a “talking cure” kind of person. If something happens, I share. I was the kind of person who didn’t wait until the second trimester to let people know I was pregnant. In my mind, I would tell the same people if and when I had a miscarriage (which I did twice). So, why keep it a secret? At least, that’s how I treat my own trials and tribulations, but I also understand it’s not the same for everybody.

My mother, who had breast cancer herself 5 years ago, didn’t want me to tell my 99-year old grandmother about my diagnosis. She was afraid Grandma would worry. But, when I finally told her last week (after she assumed my dark circles and fatigue were signs of staying up too late and having too much fun!), she seemed to take it in stride. She was more worried about the prospect of surgery than the side effects of chemotherapy. And, in the end, warned me that she would probably forget what I told her by the following day. She’s 99, so she’s excused.

I believe there’s value in sharing. It’s a kind of coping mechanism. It not only makes the cancer real, but allows me to talk, to feel things out, to make sense of my new cancer reality. Sharing means I’m not alone. I have friends on this “adventure” with me, following my progress, cheering me on.

Judy and I both feel that writing and sharing our cancer stories helps us gain some modicum of control. From the first sign on a mammogram through the biopsies and scans and treatments, we have been passengers on respective runaway trains. But, writing and sharing have allowed us to slow things down, to put the cancer in our own words, to laugh about it, to make it work for us.

At the same time, there’s also an important balance Judy and I are keenly aware of — and something we discuss in our class. In this web 2.0 culture where “sharing is good,” we also need to be mindful of how we share, what we share, when we share, and with whom we share. We talk about the pleasures and potential socio-political values of sharing, but also use the cautionary tale of Justine Sacco’s tweet heard around the world.

Certainly, there are pitfalls to sharing. And Judy and I learned that the hard way when a CBS reporter heard about our story and wanted to share it through her own local network news lens. Judy and I were hesitant. As Judy mentions below, we wanted our writing to speak for itself, but reluctantly agreed to let the reporter and her camera operator shoot some b-roll of our classroom. We did not give them permission to hijack our students before class, tell them we had cancer, and ask them to read our words on camera. And yet that’s what they did. Of course, we know better. We’re teaching a media and news literacy class, after all. But we also made a conscious decision to share, and we have to navigate what comes along with it.

For the most part, sharing has been good. Sharing has meant that friends and Facebook friends and friends of friends have gotten mammograms in the last month. Sharing has meant that at least three of these friends’ mammograms have led to biopsies. I have to sit with that. Three biopsies in the last few weeks. Two were benign. One was not. It makes the statistics and the female icons on infographics come to life.

Sharing clearly means walking a fine line between control and lack of control. It’s a fitting parallel to the ups and downs of the cancer experience. And to the different ways people navigate it.

St. Elmo’s Fire (1985)

I think back to a family dinner scene from the 1985 coming-of-age film, St Elmo’s Fire. As they sit down to dinner, one of the characters warns her boyfriend, “There are certain words that my mother finds too terrible to utter, so she whispers them.” Cut to dinner table. Her mother asks the table if they’ve heard about Bennie Rothberg, and then, without waiting for a response, follows up with a loud whisper: “CANCER.”

This may have been 30 years ago, but there are still plenty of people who follow this matriarch’s rule of thumb. Cancer should not be named or spoken of. Suffer in silence. Keep it close. Speak in whispers or out of earshot.

That’s not me. I’m not going to whisper. Or sit awkwardly while other people do.

As I started my seventh week of this journey (and two weeks after my first chemo treatment), my hair started to fall out. And fall out. And fall out. Clearly, one of the down moments. But I’m not hiding it. Instead, I’m sharing the news and making it visible — here and in my daily life. It’s the same reason I don’t want to hide behind a wig that simulates my real hair. I have cancer. And, for me, it’s important to share it.

Judy:

I know there are people who prefer to keep certain things private. Like a cancer diagnosis, for example. Obviously, I am not one of those people. In fact, it never even occurs to me to pause and ask the question “Should I be sharing this?” because writing is what connects me to the world outside my head, which can be a scary neighborhood to explore alone. It gives me a false sense of control, which is — trust me — an illusion worth having, even if it only lasts as long as I am typing. And I don’t write about private stuff in order to help other people. I’d like to be that person, but I’m not. Oh sure, it may have that unintended effect, but the main goal here is to keep my own sanity with a dollop of honesty. And humor.

I am a great fan of the late Nora Ephron, who was a master of creating public art out of private angst. Whether turning her thinly disguised divorce into a hilarious novel (Heartburn) or turning the horrors of aging into hilarious essays (I Feel Bad About My Neck…), she really knew the power of the personal anecdote. Or, as reviewer Jessica Goldstein puts it, “She turned sharing into a kind of extreme sport.” Ephron is the subject of an HBO documentary by her son, Jacob Bernstein, entitled “Everything is Copy.” That is certainly a phrase my own daughters would understand, since I have been using them as material for years. Pity the kids who grow up with a writer as a parent: nothing is sacred. Well, almost nothing.

So when Alison and I began this blog about our strangely simultaneous breast cancer journeys, it never occurred to me to worry about whether I should be sharing about it. I am aware, of course, that many people with cancer choose to keep the circle of those-in-the-know very small, for a variety of reasons. One reason, of course, is that people are suddenly either too uncomfortable to say anything or, conversely, people are way TOO comfortable with saying almost anything that pops into their heads (“Have you heard of the juice cleanse treatment in Mexico?”). But as Alison so eloquently spells out in her post this week, it’s worth the occasional unwanted reaction (including anything smacking of sentimentality or treacle) in order to sort out our emotions and thoughts as we wander through cancer-land. This blog has been something we’ve looked forward to writing each week, and looking forward is a very good thing.

Of course, there are going to be repercussions to sharing. Alison mentioned the local TV news reporter who called to say she wanted to do a story about our blog and our situation. I told her we felt our writing spoke for itself and that we did not want to be interviewed. But we agreed to let her shoot b-roll of the class so she would have some visuals to go with the story. Of all people, I should have known the perils of letting the local news team get a foot in the door. When we realized the reporter was interviewing our students, before class, about the cancer blog, we quickly decided we had to tell them about the cancer diagnoses at the beginning of class. The camera was rolling, of course, for that. Later that evening, I tuned in to see what the reporter had wrought, and the anchor introduced the piece by saying (if memory serves): “Two professors at USC who teach a class together have both been diagnosed with breast cancer. We were there (!) when they told their class about it….”

WTF? We told the class about it BECAUSE you were there!! Under the archived stories on that station’s website, we are now identified as “Cancer Profs.”

But never mind. That’s a small price to pay for the privilege of sharing.

Interestingly, Nora Ephron did NOT share her biggest secret of all: that in her 71st year, she was dying of leukemia. Even her closest friends did not know. Her son believes that is because she had always used writing as a way of controlling the outcome of her personal story, and this was an outcome that could not be controlled. The trick, I think, is to understand that controlling the outcome is impossible, but controlling the way we express the journey can be delicious. As Ephron herself once said, “When you slip on a banana peel, people laugh at you, but when you tell people you slipped on a banana peel, it’s your laugh.”