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I beat cancer twice, but women on Facebook helped me heal

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The sisterhood of the purple ribbon

It took 26 years for me to begin feeling comfortable in my own skin. Then the phone rang, and I learned that I had cancer for the second time.

When I was 13 years old, I was diagnosed with a rare form of cancer that afflicts roughly 1 percent of pancreatic cancer patients. My doctor said if we removed the tumor that had attached to the tail of my pancreas and part of the spleen, I should be cured of whatever caused the pain in my abdomen every time I ate. As a kid, the whole situation came off as routine: you get sick, you go to the doctor, you get treated. I never registered what I had as “cancer,” until it came back in adulthood.

But even before I learned about Cancer: The Sequel, I had always been curious about what this disease was, and why it happened in the first place. I lost contact with the doctor who had diagnosed me, but I recalled the name of the tumor and the fact that it historically occurs in young women, so I did what any millennial would do to find more information about things: I Googled it.

The results didn’t turn up much: a few research papers dating back to 2002 or prior, random case studies, all of which cited sample sizes of about a dozen patients or less. Every other year I’d Google the same thing hoping a new webpage would appear, but a decade later, all I’d come to know was the order in which the studies ranked on the Google search’s first page of results.

Sometime in 2013, I realized I never thought to search for stories from the patient’s side of the equation, so I looked to Facebook. To my amazement, one result appeared. It was a private group a woman had started to essentially do the same thing I was trying to accomplish: figure out what the hell happened to us.

When was the last time you felt like you truly discovered something? On the internet, organically coming across something genuinely wonderful feels so damn rare. For the latter half of the 2000s, social networks seemed to exist just as a mere source of entertainment. I couldn’t have imagined Facebook, of all places, to be the venue where a bunch of lost and confused cancer patients would find one another. (It turns out, I wasn’t alone. Last month, Mark Zuckerberg shared that there are more than 100 million people on Facebook participating in what the company calls “very meaningful” groups.)

When the Facebook group moderator approved my entry into the community, I felt like I had finally arrived home. There were dozens of women from all around the world sharing stories about how they discovered their tumors, or caretakers narrating what it was like to help their loved ones through the process. We asked questions about the consequences of a major surgery, and eased each other’s nerves when a newly diagnosed patient joined the group every few months. We anguished together when scar tissue pains appeared never-ending, comforted one another in moments of paranoia, assured each other that pregnancy is still possible, and celebrated when dinners are digested without waves of nausea. Collectively, we’d share any new research paper with interesting analysis about how the tumor may have formed, and encouraged sending those findings to our oncologists so as much information as possible could come to light. To this day, this group is the only Facebook push notification I leave turned on.

I had been a part of the community for three years before that fateful phone call. My first thoughts were to see whether the other women knew recurrences were possible. As it turns out, the majority of the members were one-timers, but a few experienced second — and even third — tumor growths. They all offered condolences in ways only we personally understood, and cheered me on to beat the disease in round two.

Although I knew what to expect, waking up after the second surgery felt drastically different than the first time around. I was no longer the kid who thought she was simply getting treated for being sick. After a 10-hour operation, I awoke to eight new scars that branded the body I took so long to accept. In the ICU, I had nightmares about tumor cells returning more aggressively, and what organs they’d end up in if they came back again.

Even when I was physically “back to normal,” I didn’t feel normal. I couldn’t smell peppermint without being reminded of the week in recovery, because that’s the scent of the chapstick they gave me in the hospital. I was scared to touch or even see a can of ginger ale, because the last time I had it, I painfully vomited my entire lunch. Someone made a reference to an Arnold Palmer drink, and I froze as memories transported me back to the cold, common room where I stared sleeplessly at the TV in a drug-induced haze, watching the news about Mr. Palmer’s passing.

When it was time to return to work, I thought going back to my old life as a tech journalist would reinstate a sense of familiarity. But I didn’t always arrive to work with the same cheerful candor I had every day over the previous few years. What my friends would describe as a “bubbly personality” of mine had turned into a sad shyness, exacerbated by how alien I felt at this new company I’d begun working for. I felt constantly fatigued.

Back at home, a shirt that read “Survivor” that I got from participating in a pancreatic cancer fundraiser taunted me. What did I survive, really? When I was six, I watched my dad go through rounds of chemotherapy to fight liver and lung cancers. Falling asleep with anesthesia then waking up is not at all as heroic as the term “survivor” suggests, especially compared to the fight he put up only to not receive the same prestige. The word “lucky” comes up a lot, too. I slowly grew to resent it.

Photo by Natt Garun / The Verge

I turned back to the Facebook group in hopes of feeling less alone when the latest post in the community caught my attention. One of the women had shared a photo of her daughter, who had gone through the surgery a few years prior. This evening, the young lady was headed to prom. She looked beautiful and excited. She looked normal.

That’s when I realized what surviving meant all along. This entire time, I had viewed us as patients — victims of a certain illness. But we are so much more than that. I browsed through the group members’ profiles and learned beyond cancer-havers, we were also mothers and sisters. Dancers, painters, nurses, technicians. What cancer gave us is a symptom, not an identity. And it didn’t stop any of the women from pursuing their lives, one extra scar at a time.

In this virtual home, my female peers showed me that it’s okay to be doubtful, scared, or unhappy sometimes. It’s normal to imagine the unimaginable. Cancer has broken me mentally, but the women remind and motivate me to just keep breathing. Like them, one day I’ll find meaning beyond just being alive for another day. And I will. At least, I’m hopeful.