Come as You Are: Living in Stage Four
Posted on June 10, 2013, 7:45 AM
By Mary Elizabeth Williams
Everybody loves a winner. And when I first got cancer, I was such a winner. I had faced a malignant melanoma diagnosis, a difficult, permanently scarring surgery, and a painful recovery with flying colors. I was, both friends and strangers alike told me admiringly, a “survivor.” Then a year later I was rediagnosed. Metastatic this time. Stage Four. And suddenly I wasn’t a winner any more.
Growing up, I was always the kid picked last in gym class, the one nobody really wanted on their teams. When I got Stage Four cancer, it was a lot like that. I wasn’t the popular survivor any more. I wasn’t a feel good champion of pluck and survival. Some of my friends looked awkwardly at their feet when I came into the room. Others told me – with great authority – that I just needed a positive attitude and I could beat this thing. Some flat out dumped me. It was a lonely, weird place. But you know who needs a team most? It’s not the popular kid. It’s the scared, lonely one in the back. I never needed help and support and basic kindness more than I when I was at Stage Four, and yet I never felt more invisible. And almost as deep as my fear of the cancer that was growing within my body was the profound sense that I had somehow let everybody down. That I was a disappointment.
Fortunately, soon after my devastating news, I joined a local cancer support group. Even before my first meeting, I knew it was the right place for me because of its simple four word slogan. “Come as you are.” There, it didn’t matter that I was Stage Four, that my odds were slim. There, I didn’t feel like I was on death row, I wasn’t a failure in my personal version of “Survivor: Cancer Island.” In my support group, I could just come as I was, every week, with no expectations, no performance anxiety.
People with metastatic cancer tend to be ignored in the public discourse of cancer. We don’t fit the profile of the upbeat warrior, triumphant and bald. And so, we often remain unseen. Mysterious. Definitely a little spooky. I certainly didn’t know much about what the terrain was like until I found myself on it. All I knew was that it had to very, very bad for there to be no Stage 5. And so, when my oncologist told me I was Stage Four, I was, unsurprisingly, deeply distraught. Yet as I sobbed to my doctor she told me, “Stage Four isn’t what it used to be.”
She was correct. Stage Four is no longer an inevitable rapid countdown to dying. A growing number of cancer patients are now living longer – sometimes for years at a time – at Stage Four. Even more amazingly, there are more and more people like me out there now – patients who’ve had inoperable, metastatic cancer and have been successfully treated. Thanks to an incredible immunology clinical trial, a fantastic team of doctors, and the pure good luck of my body’s responsiveness, I have now been cancer-free for a year and a half. And just the other day, I was quite happy to correct an author who’s just written a children’s book about metastatic cancer about her unfortunate use of the word “incurable” to describe it.
One tiny number, one little word like “metastatic,” can’t possibly articulate the experience of millions of people living with a variety of cancers. So when you hear it, whether as a family member or a friend or as the individual who’s sitting directly across from the person with the stethoscope and the difficult news, I hope you remember that. I hope you will not be like the folks who get up and leave the show while the houselights are still down. Trust me, however the story unfolds, it doesn’t end at the diagnosis. There is more to come. As the great philosopher Yogi Beara once said, it ain’t over till it’s over.
I have seen the effects of metastatic cancer play out in many different ways. Some of us get better. Some of us hold steady. And some of us die, because mortality is an inevitable side effect of living. And it doesn’t mean we didn’t try, or that we “lost a battle.” The last time I saw my friend Will, he didn’t look like a loser at all. He looked beautiful.
We had run into each other at the farmer’s market on a Saturday morning. We smiled at each other, just a pair of Stage Fours, one who was getting better and one who wasn’t. On that day, surrounded by a swirl of people rushing around, we stood still, because if you’ve ever faced the possibility of not having much more time, you treat time a whole lot differently. We talked about our families and our health, about hope and also acceptance. We were as much alive and as present as anybody else at that market that day. Maybe even just a tiny bit more. That’s the gift of the journey. We weren’t invisible. We definitely didn’t feel doomed. And if the people bustling around us didn’t notice us or felt too uncomfortable to look, cloaked as we were in our Stage Fourness, they missed something pretty great. Because, no, we hadn’t exactly been winners in the game of cancer. But we sure were dazzling.
Mary Elizabeth Williams is a senior staff writer for Salon.com and the author of “Gimme Shelter: My Three Years Searching for the American Dream.” She is currently in a clinical trial for advanced melanoma, and has been cancer free for over a year.
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