Misfortune telling 10


Diagnosis, prognosis, ceanothus. The last one is a flowering shrub that left untended overwhelmed our entire flowerbed. The second one threatened to do the same thing to my psyche.

The word “diagnosis” is from the Greek roots “dia” (through, between, across, apart) and “gnosis” (to know). With the medical imaging currently available, to know through/between/across/apart is pretty accurate. A misdiagnosis is much more rare than it used to be.

Prognosis is a different story. “Pro” means “before, forward, in place of.” Before knowing. Knowing the future. In place of knowing. This is crystal ball stuff. To be sure, prognoses are based on a wealth of experience, but misprognoses are fairly common. If they are any more accurate than stock market predictions, it’s only because the monkeys throwing darts are wearing lab coats. In this era of consumer protection and truth in advertising, I propose we call prognoses what they really are: Proguesses.

No one has ever died from a diagnosis, but I doubt the same can be said for prognoses. The professional prognosis for Diana of 3 to 12 months to live nearly killed me and I wasn’t even the patient. Diana accepted the diagnosis, and if she didn’t outright reject the prognosis, she at least ignored it. I think that pissed it off and it took it out on me. It didn’t occur to me that the prognosis could be wrong until we were past the one-year mark, the outside date of her expected demise, and even then I only allowed (to myself) that it was maybe “sorta wrong.”

Now we’re six years out and Diana is healthy with no evidence of disease, or “NED” in oncological parlance. Better NED than dead. It’s as close as she’ll get to being cured in the realm of Stage IV cancer from the western medical perspective. So doesn’t that make the initial prognosis wrong? Well, no. It’s not that the prognosis was wrong exactly, it’s just that it wasn’t exactly right, either.

I painted houses one summer to earn money for college. By the end of July I had developed an aversion to shingled siding and an appreciation for subjective statistics. My partner, Harry, figured we had a 50/50 chance of getting a job at each door we knocked on because the house either needed painting or it didn’t. I suggested that by that logic, we should only visit houses that needed painting and improve our odds to 100%. But Harry aspired to be a Supreme Court Justice and a commitment to balance was important to him. We would—or rather he would—knock on all doors. Our conversion rate over the summer ended up a little less 1 percent, about the same as Diana’s 5-year survival odds.

So what are the chances that a given prognosis is right? Supreme Court-aspirant Harry would say 50/50; it either is or it isn’t. With the luxury of hindsight we could say either 0% or 100%; it either was or it wasn’t. If that math doesn’t make sense it’s because the question doesn’t make sense. The nature of a prognosis makes the question irrelevant.

A medical prognosis, like any projected outcome—whether economic, political, personal, marital, environmental, or just about anything else—is essentially based on the following form:

  1. Given what we know
    and
  2. assuming nothing changes
    then
  3. something is likely to happen.

But I think what we don’t know is considerably more influential than what we think we do, so I’d assign a pretty low accuracy coefficient to the first step. And since change is constant and unavoidable, the second step completely invalidates the third so I find myself unable to invest much in the conclusion regardless of any caveats attached to it. To be honest, I’m having a very difficult time getting worked up about any prognostication these days, dire or otherwise.

There are, of course, legitimate concerns in the world that need attention, so is this just rationalization on my part to avoid being an agent of change in Step 2? Could be. Hard to know. But there’s only been a single overriding issue that has affected my world for the past six years. So is that just being selfish? You bet it is. But I’m clear about my role in the world right now and make no apology.

Diana’s time was supposedly short, so we didn’t spend much time worrying about long-term implications of anything. That is one of the ironic benefits of imminent death. We were guided by single-step cause-and-effect: we did whatever made Diana feel better immediately. There was no guessing about it. It either did or didn’t. Is this approach sustainable? I don’t know yet. I’ll have to get back to you.

Diana’s prognosis turned out to be both right and wrong. There’s no question she has survived much longer that anyone anticipated. But on the other hand, at some point in that 3- to 12-month timeframe her life most certainly did end—and an even better one began.


10 thoughts on “Misfortune telling

  • Reply
    Lily Taylor

    Kelly, you and Diana are absolute rebels, in my eyes -rebellion against a disease and the prognosis is traditionally holds. I aspire to be a rebel in my everyday life and you two are my heroes. It’s hard to stray from the traditional. Thank you so much for sharing your experience with us (and in such an exceptionally eloquent and visual way). I know that you didn’t ask for any of this, but as you said, it’s given your lives a do-over. Happy belated birthday!
    Love, Lily

  • Reply
    Isabel

    Hi, Kel: I reckon we missed your b’day now that I’ve read the various replies to this latest blog post! HB 2 U!.

    I have always been fascinated by the business of prognosis–and the ability for some people to be detached from the temptation to affix permanence to prognosis. Medicine is not a science, oddly enough–well, not many aspects of it, anyway. And given the real limitations of what we know about how the body operates–and the mind and the spirit–it’s amazing when I see people (like you and Diana) removing yourselves form the lure of prognosis and moving toward the realm of the possible.

  • Reply
    Bob

    Great, Kelly. As always.
    Who could surmise that such a negative prognosis would contribute to a rebirth?
    Thanks, and Happy Birthday.
    B

  • Reply
    Roberta Bristol

    dear Kelly, Again I read, learned and was inspired in a new way with your blog. Great writing and real fun to read. I have a whole new feeling and thought about Prognosis and “never giving up”. My thoughts go in many directions to my own immediate health issue, and will go do what I enjoy most on this beautiful June morning. My love to you and Diana. Roberta

  • Reply
    laura taylor

    Magnificent! I look at prognosis as a little bit of voodoo and a lot of guesswork. We are human beings, and as such can be completely baffling. When my daughter was in the 8th grade her math teacher told me my daughter would never be a math teacher…funny…she is certified in math and science and teaches in Seattle. So, really…what are these things but predictions based on what seems reasonable to one or a group of people…it doesn’t seem as if it was reasonable to Diane, so she just changed the outcome. Life is wonderful…thank you.

  • Reply
    Dave Alden

    Kelly, it’s always a thrill to see notice of a new post. You dig deep and then find the words to eloquently express what you find. Nicely done, my friend.

    Although you made me uncomfortable about my upcoming task of painting my shingle-sided home.

  • Reply
    Chuck Blagg

    Great job Kelly, and yet another “Happy Birthday” !!! I know this to be true in my life… Take one day at a time, live, love, and laugh abundantly, and live in the moment… all of which are evident by your writing. Give our best to Diana!

  • Reply
    Steve Shapiro

    Kelly,
    Another beautifully articulate, heartfelt, and tear-jerking set of observations. My expectations for each post are very high — and you always exceed them.

    Oh, by the way, Happy Birthday!

    Steve

  • Reply
    Don Foot

    Kelly,

    You know I’m sitting here at our new mill about a week from start-up and see your post. I walked away from everyone at their various stages of asking questions so I could catch the latest. Inspiration, wonder, feel-good, amazement; just love to read these each week. I am truly happy for you guys. Hope we can get together one of these days soon.

    Don

  • Reply
    Carolkerley

    Once again such amazing wisdom.
    I look forward to all your postings as each one causes me to stop and look at Linda’s situation and mind
    as the caregiver. Thank you Kelly so very much.

    Love,
    Carol

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