Those are some of the people who've joined an online conversation with the journalist Leroy Sievers over more than a year now. He's the subject of a Discovery Channel documentary this weekend by his longtime colleague Ted Koppel.
Sievers discusses his cancer-blogging experience with Steve Inskeep.
When I first started out, a lot of people thought I was nuts. It's like, 'Why do you want to talk about it?' Because for the most part people don't talk about it. And the more I thought about it, it's part of my life. People that care about me, the people around me, have a right to know. And also I just don't think I can keep something that big quiet. And it's OK to talk about it.
This is my story, and when I look at the people that write into the blog, a lot of them don't respond necessarily to something I write. They simply tell their story: 'This is where I am.' On the other side, there are people that write and say, 'Boy, my mother, father, husband, wife never said a word. I didn't know what they were going through.' And that's really what drives me to talk about it.
Marianne Dalton, a ballet teacher and former ballerina in Rochester, N.Y., wrote this on Sievers' blog:
Once the floodgates are open to stories like that, what is off-limits? What are the things that you don't say when cancer survivors talk to one another?
I don't think there's anything off-limits. I mean, you talk about the inner workings of your body. You talk about things you don't talk about in polite society. It's a different world. We call it cancer world.
Do you ever talk about what someone's chances might be?
Sure, very directly. My first question when I was told I had a brain tumor was, how long? And the prognosis was pretty bleak. I've been told any number of times, probably a couple of months. And we really thought this summer was probably going to be it for me.
When you first learned of that diagnosis, brain cancer, was there something that you decided you wanted to run out and do, or at least thought about?
There really wasn't. It was a shock. I had had colon cancer five years before. I was clean for four and a half years and then I got a new tumor in my brain. One of the things I think bothers people sometimes when I say it [is] I'm at peace with this process. I've had a great life. I've traveled the world and all that. I'm not eager to die, I don't want to die, I'm not ready to die. But I'm OK with the process.
Why does that bother people?
Because I think they think it sounds like I'm giving up and I'm not. You deal with death on a daily basis. And it scares you still, but in some ways it loses some of the mystery maybe.
Have you learned something from the many cancer survivors you've met on the blog?
Oh, sure. A lot. The obvious one is life is precious. That sounds like something on a Hallmark card or something like that. But you still appreciate each day more than we did before.
Bob Maimone wrote:
A friend of mine saw me at the garden store with a cart full of perennial plants. He noted that buying perennials instead of annuals must be a sign that I'm planning to be around longer than [an] annual plant. You bet. I want to be able to look at every one of those plants I place in my garden and think back on when I used to be a stage 4 colorectal cancer patient.
It's springtime. Are you gardening?
No, I'm not. I'm not a good gardener. I move the trash and things like that. But for the first six or eight months, I bought no clothes because I didn't think I was going to need them. I actually wrote about it on the blog and got a big response. I went out and bought a pair of shoes, which was a big step. In the same way he was talking about planting the perennials. In some way, you're sticking your thumb in the eye of the cancer. But it's a gesture of hope that I'm going to be around long enough to use them.
Can you joke about your cancer?
I can. I don't think people like to hear it. One of the first things someone wrote in and said, 'You know, at toll plazas people with cancer should have a special lane so we can go through because we don't have that much time.' It's OK to laugh about it. It's OK to joke about it, but it makes people really uncomfortable. I think people are so afraid of appearing insensitive or saying the wrong thing or something like that. Sometimes as the patient, I want to laugh about it. It's absurd.
How far ahead do you look now?
I don't know. I'm in a strange situation now. First of the year, my chemo had failed, tumors were growing. And then through radiation and something called radiofrequency ablation, we've killed them all. Now, some of the blood tests indicate that there's still something in there, but my active tumors are dead. So I used to joke I needed a job, not a career. And now I'm in the position of saying, 'Boy, I need to get my career back on track.' So I'm starting to gradually push that back to maybe a couple of years.