Friday, December 18, 2009

Advice to a Cancer Patient Facing News He Didn't Want

Recently an online friend from long ago introduced me to someone who's got a cancer case that's not going well, looking for any advice and counsel. He wrote today to a big cc list, with unfavorable news (I'm obscuring all details), and I replied.

In the email he expressed understandable concern about the next treatment, discussed his physician's news about the odds, and said he doesn't want to disappoint anyone. This is my response.

Note: I'm not saying anyone should be like me, nor that I'd say this to any other individual. This is just my response to this one person. I'm posting because I hope it will be of use to someone else someday - perhaps light a candle of hope and determination in someone.

________________

K,

This is not the news we want, but since H. introduced us (as we're both cancer patients) and you cc'd me on this, I'll presume you want feedback and here it is.

(Folks, this will be long, and blunt, so feel free to ignore it.)

First, I feel for you. I faced imminent death (median survival 24 weeks) three years ago so I know what it feels like. For my disease the web sites said "almost all patients are incurable," "prognosis is grim," "outlook is bleak." And I have friends who are still going through this all the time. Visited one today.

And, here I am three years later - my doctor's main advice after this year's physical was back to normal: I should start losing weight, like any middle aged schlumpf.

Remember, probabilities apply to populations, not individuals. Nobody knows what will happen to you, and anyone who says otherwise is lying. Something like 1% of all cancers disappear spontaneously, and science has no answer for that. (And I say that being trained as a scientist - MIT graduate and all that.)

Wisecrack: "Statistically, the average person has one ovary." Absolutely accurate - but it tells you nothing about any individual.

Second, I know first hand that the only useful approach is to find out what's so, find out what your options are, and ask "What's next?" Anxiety is understandable but it's useless. You can unlearn it: it helps nothing, consumes your energy and psyche, and actually weakens your immune system. You may want to get some advice or coaching or therapy or whatever in things like mindfulness, relaxation, or even one of Bernie Siegel's Exceptional Cancer Patient retreats http://www.ecap-online.org/ecap-retreats. My family was going to send me there but I went into treatment first and got better. If I were in your shoes today, I'd do it in an instant.

Two books I like: There's No Place Like Hope and Anticancer: A New Way of Life by an MD who twice beat an unbeatable cancer (brain cancer!), despite his own oncologists telling him it wasn't likely. You wanna be like him?? Sounds good.

Honestly I'm not sure your doctor did you a favor by emphasizing the negative. He may feel an obligation to tell you the odds (some docs are trained that way), but did he also spell out everything you can possibly do to improve those odds? THAT's what deserves your attention. You're already well aware that you might die - okay, so now what are the ways you can reduce that chance?

I'm dead serious about that. Been there, and that's the approach I took.

For instance, what have you been doing to make yourself laugh? Laughter's been proven to be good for the immune system. I had my family send me the whole first season of Saturday Night Live on DVD, and every Bugs Bunny cartoon ever recorded. What makes YOU giggle yourself silly? Are you doing it? (Even if you're dying you can have fun in the process!)

And just to be clear - if you die you won't "disappoint" anyone. Do NOT get into a head game of feeling guilty about having cancer! For heaven's sake. I think you need to get in touch with what YOU CARE ABOUT: say "I will never give up, because I care too much about all of you to say goodbye before I absolutely have to!" THAT is a reason to survive - not to "avoid being a disappointment."

You need to get in touch with why you WANT to be alive, and then do something about it. Even if the odds are bad, like mine were.

You might not survive. So get it in gear, if you want to.

I look forward to hearing YOU talk like this to someone a couple of years from now. :)

____

Addendum Dec. 21: see also "Don't Let the Median Scare You to Death"
____

Addendum Feb. 16: for a start, see Tim Conway's "Dentist" clip here. You might want to visit the bahthroom first.

5 comments:

  1. Dave,
    Brings tears to my eyes...my Mom had 'incurable',don't bother doing anything, late stage cancer...and has since had a brain tumor and two broken hips...and did I forget to mention the broken jaw and face bones? :-)But she got into gear...
    My good friend had surgery for breast cancer
    TODAY (and she's in her early 40's so mamograms are a still a good idea for women under 50?)Thank you for a great post to share with her in this very difficult time...Ellen

    ReplyDelete
  2. Dave,
    Thanks for this post. I'll make sure my friend and her sister, whose situation (stage 4 colon cancer) I told you about this week, read this.
    You're an inspiration!
    Janice

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  3. rcatlett@wavecable.comDecember 19, 2009 at 10:24 PM

    E-Patient Dave: I started pretty much where you did with a Stage IV, Grade IV Dx in April 2007, and was totally flipped out by my prognosis. But I always thought there was a way out of this predicament...one that would work for me. My job was to find it. For me it's been Surgery and Sutent along with learning all I could about treatment so I could choose the best for me. Here I am almost three years later, NVED for a year and still working hard to choose the best path to stay that way.

    You couldn't have given K. better advice. The only useful approach: "find out what's so, find out what your options are, and ask "what's next."

    Your fellow cancer Warrior,

    Richard Catlett

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  4. Dave --

    Thank you, Dave. A great letter.

    I know you won't mind that I forward it someday. But I hope not soon.

    I'm very glad you're well. Way back when, I never thought I'd be writing you now. How glorious to be wrong.

    Richard Weissberg

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  5. Great to hear from you, Richard. You were such a great support during my illness!

    How's Susan doing? (Write offline if you prefer.)

    ReplyDelete

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