Personal Narrative
Mar 2007

Taking "CA" Public

Leroy Sievers
Virtual Mentor. 2007;9(1):234-236. doi: 10.1001/virtualmentor.2007.9.3.mhum1-0703.


It's long been the disease that dare not speak its name. Not that long ago, an obituary might have said that someone passed away "after a long illness." It's still hard for people to talk about today. Recently, a technician who was giving me a CT scan said happily that we were looking for "CA." I had no idea what she meant. Of course, I'm talking about cancer. Why is it that we're so afraid to say the name? What power does this disease have that the name alone scares us? It's just a disease after all.

Granted, it's a disease that devastates, that leaves behind it the scorched earth of death and sadness. It's a thief that steals our old lives, that makes a mockery of the idea that we have any control over what's happening to us. But it's still just a disease. So why is it that we're so afraid to talk about it, to say the words out loud?

I have cancer, a lot of it. And for better or worse, I talk about it. A lot. I've been a journalist for more than 25 years. I made my career by going to see terrible things happening to other people. Wars, epidemics, natural disasters; I have seen literally tens of thousands of people die before my eyes. But the stories I covered were always about someone else. I was fine. Until I wasn't.

I had my first bout with colon cancer back in 2001. I had surgery, recovered, went back to work and was clean for about four and a half years. At five years they say you're cured. At five years, I started to slur my words. It turned out I had a brain tumor. And then the bad news just kept coming—there were more tumors in my lungs. That colon cancer we thought we had beaten had come back with a vengeance.

At the time, I was doing some commentaries for National Public Radio, mostly on foreign affairs. They asked me to do a segment about having cancer and then a second one. That ultimately turned into a daily blog, podcasts and more commentaries. The name of the project is My Cancer, and that's what I talk about—my cancer. I said at the beginning that I would be totally honest, and that no subject would be off limits. A number of people asked me whether it was a good idea to be so public about it. After all, they said, it's not something people like to talk about. I can't tell you how many times I heard that.

As comfortable as I was having other people be the subjects of my stories, I was never supposed to be the story. But I had agreed to do it. So I wrote about the whole experience, the good times—and there were some of those—and the bad times. The pain and nausea of chemotherapy, the looks you get when part of your head is shaved and you have a line of staples up your skull, those dark hours of the night when you are alone with thoughts of your own death, and probably more painful than anything else, the pain to your loved ones—your friends and families—that this disease brings.

And then something happened. People started to write in. They didn't necessarily respond to something I wrote. They just wanted to tell their own stories. It was like they had no where else to turn, no one else who would listen. And more heartbreaking than that, so many of them said that "my (and fill in the blank here) mother, father, brother, sister, husband, wife wouldn't talk about their cancer. I had no idea what they were going through."

And that's really the reason I went public. As uncomfortable as it may be for us to talk about cancer, we have to. We don't have the right to withhold thoughts and feelings from the people who care about us. That's too cruel. And Jack Nicholson in A Few Good Men was wrong. They can handle the truth.

One of the first things a cancer patient wonders is just how much truth to give out? Close friends and family get the unvarnished truth, like it or not. But how much you tell other people depends on how much you think they want, and how much you think they can take.

On the blog, and on the radio, I put it all out there. Some people have asked me if this is cathartic, if writing and talking about my cancer helps me deal with it. My answer is, "not really." It does make me focus on it every day when I have to sit down to write. But the cancer is right there virtually every waking moment of every day. It doesn't go away.

So in the end, I think I made the right call in deciding to go public. I get great support from all of the people who write in with their own thoughts. I hope that my words help them as well. We're all in this together—cancer patients, families, loved ones, doctors, nurses, friends. We all need to support each other. Staying silent about this monster just isn't an option. And after all, it's just a disease.


Virtual Mentor. 2007;9(1):234-236.



The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect the views and policies of the AMA.