"Hey my people." That’s how I started my Well Again blog five years ago. I chose those words because I wanted you to know I’m different. I’m not a doctor or a social worker. Not a hospital caregiver whose job is to say the proper words and no more. Nor am I that other kind of professional we meet on the cancer voyage: I’m not a faith healer, conspiracy theorist, or lifestyle evangelist.
I’m something else. I’m a storyteller. We don’t usually experience cancer and stick around to tell about it. We run away the first chance we get, which proves we’re saner than people give us credit for.
If I’d only been diagnosed once, I’d still be on the lam like everybody else. But my cancer kept coming back until eventually I realized that it was a powerful change agent in my life, and I loved some of the changes.
Do you have a knack for joy? Do you notice joy coursing through every capillary and exploding through your fingertips? I do. My time with cancer made me a joycatcher. That’s my word, but you get it. I learned to dive into the joy of small moments and save the memories for later.
There is no describing how wonderful it is to eat on the first day you truly feel good again after chemo. One night I sat in a tiny Italian restaurant and they brought me hot bread and a bowl of pasta e fagioli soup. Ten years later I can still smell the white beans and see the steam rising from the spoon.
If I’d rather think about something else while I’m in the doctor’s waiting room, I can retreat into the memory of that soup, or a million others just as delicious. The journey is imaginary, but the comfort is real. That’s the power of stories.
When I was first diagnosed with ovarian cancer, in 2001, I regarded the experience with horror. In the oncology waiting room, I looked at the rest of you like you were…I don’t know what. Lab specimens maybe? Not people, and certainly not people like me, because this was not my story. I made it through treatment with a better result than anybody expected, and back at the magazine where I worked, I got busy turning my cancer trip into a tall tale. I made other people laugh, but my main audience was me. I wanted to be Brave Girl Who Beat Cancer.
I thought I had it made, too. Four and a half years went by. Then, in 2005, there was a little hop in the number on my tumor marker test. The number climbed and kept climbing. A year later, I was back in surgery and chemo and, forget the heroics, I was in a rage. Not just scared but mortified, ashamed, like I’d been impersonating a celebrity and now I was busted. My stories at this point turned black. Being a model patient hadn’t kept the cancer away, so I thought, The hell with this, I’ll do what I want.
What I wanted was to work like crazy on my career, and I did. If I couldn’t succeed at cancer, at least I could defy it. I remember standing at a conference table, bald, telling a group of startled young executives, “I’m not going anywhere!”
Aside from the Joan Crawford overtones, this big speech turned out to be the exact opposite of what happened. Six months later, my company was sold, I was out of a job, and my cancer was back. This time I thought, I’m going to die.
I started to change. With death coming, I got patient enough to ask about what might or might not be coming next. I made friends with other travelers on the cancer voyage. I became a person who was capable of showing up for friends as they died.
At some point, it dawned on me: This is my story. This is my tribe. These people, with the guts to stand and face this invisible minotaur, cancer—why would I want to hang out with anybody else?
As per usual, my predictions about my future were wrong. Thanks to my brilliant doctors and amazing advances in treatment, I’ve survived long enough to learn that cancer changes us for good. Now I work with my tribe, to share what I’ve learned and help people like us discover our own authentic pride and meaning in this voyage.
At this moment, 15 million of us are living on beyond cancer. Our story is greater than we know.
I’d like to hear yours. I invite you to write to me here and at clearidmonitoring.com, where I blog each week. Clear ID Monitoring is a groundbreaking liquid biopsy by Cynvenio Biosystems.