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Winning Against Cancer: Community TV

  • Richard Cohen:

    Jonathan Alter is a senior editor and columnist for Newsweek magazine. Jonathan is also a contributing correspondent for NBC news and is the author of The Defining Moment and Triumph of Hope . Jonathan, I checked you out. I looked at your credentials and nowhere did I see cancer survivor. Where does that fit into your identity?

  • Jonathan Alter:

    Well, I've never made a secret about being a cancer survivor. I wrote a cover story in Newsweek in 2006 about my experience in 2004 surviving mantle cell lymphoma and a bone marrow stem cell transplant I had in August of 2004. So I’ve always been very up front about it, and I talk to groups about my cancer experience. I talk to pretty much anybody who has had mantle cell lymphoma, who needs a little bit of help, but I don’t want to be identified as a, I guess, professional cancer survivor.

  • Richard:

    But it must have changed your life.

  • Jonathan:

    It did change my life. It was the worst thing that ever happened to me in my life by a long shot. I had good reason to believe that that I might die sometime in the next couple of years after I was diagnosed.

  • Richard:

    Non-Hodgkin’s lymphoma has about a 50% survival rate.

  • Jonathan:

    One of the things that I learned about cancer is that the statistics are extraordinarily misleading and that patients need to look at them with great care and a sense of their inadequacy. So first of all, in looking at statistics as somebody advised me at the time, somebody has to be in the good statistics. You know, if you have a 50% chance of dying you also have a 50% chance of living. Now, you can’t do that all the time. The dirty truth is that no matter what kind of a brave face people put on about their cancer, no matter how much the culture demands that you stay chipper and stoic, there are a lot of dark nights of the soul and anybody who has had cancer will tell you that, and so people shouldn’t feel bad if they’re depressed. But they should also try to stay optimistic, try to assume that they can be in those good statistics and also be very skeptical of the statistics. So in my particular case, for instance, I was diagnosed when I was 46 years old, and so I asked my doctor, “OK, it’s 50/50 in general for mantle cell lymphoma. What would it be for somebody in their 40s as opposed to their 70s or 80s, which is where it usually strikes?” And he said, “We don’t have any numbers on that.” And it amazed me. It was just the beginning of my education in the uncertainties, lack of precision, and disorienting quality of so much of the cancer research that’s out there.

  • Richard:

    One of the things that struck me about your situation -- and I remember talking to you when you were really at your sickest -- was how involved you became in your own care, how much you learned, how much you took part in decisions. That’s pretty unusual, isn’t it?

  • Jonathan:

    Yeah, I think it is. A lot of people want to subcontract it to somebody else, either their doctor or their spouse, and that’s an understandable reaction. It’s probably the more common reaction and maybe the healthier reaction. Perhaps it’s because I’m a reporter, but I just had to go out and do the story. And I would say to myself look, if I don’t go out and research this the way I would a big story and then I miss something, I will have missed the biggest, most important story of my life.

  • Richard:

    You played a major role -- correct me if I’m wrong -- in choosing therapies and choosing venues. Do you think you are healthier or the fact that you’re still surviving is in any part because you were so active?

  • Jonathan:

    No, I don’t think there’s any connection between my survival and my active nature. I’m very non-judgmental about different coping strategies. There is no right way to have cancer. And people should not ... it’s hard enough to have cancer. To have people on the outside laying a guilt trip on you: “If you’d only eaten this, if you’d only taken these vitamins, if you’d only taken a more active role, if you’d only not been so depressed.” And all of those things are a form of saying, “Hey. You had this coming. You deserved this.” Nobody deserved it. And people who don’t have cancer are so anxious to sort of ward off cancer that they think that the people who do have cancer must have done something wrong.

  • Richard:

    But it’s not just cancer, and I’ve written about this problem dealing with my illnesses, both colon cancer and MS. I feel guilty about it. I feel ... I apologize for it.

  • Jonathan:

    Uh-huh.

  • Richard:

    You know, I feel like I ...

  • Jonathan:

    Yeah, like you did something. You didn’t do anything, Richard. It happened to you. One of the things that I remember so well from right after I was diagnosed was an email that I got from you, Richard. And you said, “Cancer sucks. You’ll learn a lot about yourself, other people, and the world as you go through this experience.” And then the line I’ll never forget. At the end of the email, you said, “Did I mention that it sucks?” And I kind of used that formulation in trying to help other people a little bit because there is an irreducibly sucky quality about the whole thing that you just can’t gild the lily.

  • Richard:

    No question about it. Also, you have an incurable disease.

  • Jonathan:

    Well, I tend not to think of it that way. I was told that when I started, you know, this is incurable. And then as I got to know people who had cancer, they convinced me that that’s really not the right way to think about it, and that the right way to think about it is “there’s no cure right now, but I’m going to stay alive long enough so that, you know, I’m here when a cure comes along.” And indeed in my case, there still is no cure, but there’s a lot of very interesting things in the pipeline that, you know, show evidence of lengthening survival, so you know ... I, after a couple of years of having to pinch myself and going, “My god, I’ve got an incurable disease,” I really don’t think of it that way so much anymore. And also there’s a huge difference between having an incurable disease and having a terminal disease, and I think people tend to kind of confuse the two concepts. You know, if you have a terminal disease, it means that a doctor has told you you’re gonna die of this thing pretty soon. If you have an incurable disease, it means that the science hasn’t caught up and provided a cure for the cancer for which there are very, very few in all of cancer.

  • Richard:

    But you can put it out of your head ...

  • Jonathan:

    I remember in 2004, the year that I had my bone marrow transplant and, you know, an awful lot of treatment over many months, somebody said to me -- a cancer survivor -- “You know, there will be a day that comes when you go through an entire day and you never think about it.” And I said, “Ha, that’s impossible. That’s just impossible. That is never going to happen. I will think about this every single day for the rest of my life.” And I would say about ... it took a while, but three years, four years after my treatment when I’d been through many scans and checkups and I’d come back clean, I got to a point where I could go a day, you know, without thinking about it, which I’d never expected. I don’t think I’ve yet gone a week without thinking about it but, I’m to a place where I can sometimes, you know, the next day I’ll sort of realize, “God, I was working so hard yesterday, I didn’t think one time about the fact that I was a cancer survivor.” Time does heal certain things, and you can get to a place where you don’t think about it all the time.

  • Richard:

    Boy, I’ll tell you, it’s so funny to hear you talk this way because I’ve gone through the same thing and I used to say to myself, “Geez I haven’t thought about MS for days.” And I crossed the line because the illness has progressed where I can’t not think about it. And, it’s too bad because it’s a luxury to be able to move on.

  • Jonathan:

    It's a luxury that I have that unfortunately you don’t, and I don’t envy you in that.

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