1.15.2010

No Man Knows the Hour or the Day

Wouldn't you like to know when you'll die? When Gavin was ill, we talked to a multitude of experts about other things, trying to remain in control, without ever directly asking "how long does he have left." There's a certain vogue among "survivors" that says "knowing" tilts your mind toward conforming, toward proving the doctor right (or wrong) rather than just living as long as possible. We were committed that Gavin would "end up" in the upper tail of the survival curve.

A few people told us anyway, and you know, in this world, when you're smart, it's just not that easy to keep your eyes shut tight.

While we didn't take any of the estimates very seriously, we adjusted our minds and lives a dozen times during the 22 month ordeal. Looking back I compared what we expected, roughly, at each of many junction points, with what happened:

When my husband was first diagnosed with a terminal illness, we thought it would shave a few years off his life. (He had less than two years at that point).

Whenever we got into a car, I’d remind him he was statistically more likely to die today in a car accident than from the cancer. (Especially if I was driving.)

When we quit the first doctor, who told us he had a year or two without treatment, Gavin promised me he’d live to see our infant daughter graduate from college. I knew he was wrong. (That doctor’s estimate was right, even with treatments).

When the first treatment failed, we thought he might have another ten years (he had a little more than one year).

Gavin swore he’d be around to see our daughter kick a soccer ball around a big field.
I hoped he'd be right but also figured kids start playing soccer pretty young these days. A month or two later, like Sleeping Beauty’s wishful parents, I banned all balls from the house.

When the third treatment failed, we thought he had another few months (he had about one month left).

When he entered hospice, the experts told us he had a few weeks left (he had just four days).

Two days later, they thought he had a week or so left (he had just two days).

The next morning at 9:00 they thought he had a few hours (he lasted till 7:00 pm).

Is the lesson that the least sensitive doctor of them all -- the one we quit in rage and frustration -- was the best? I don't think so. I just think it's a fool's game to time the market or the reaper.

* * * Comments * * *

6 comments:

letterstoelias said...

It's a tough balance - not wanting to know the stats and the estimates, but trying to find balance and be prepared (as much as one can be . . .)

At diagnosis, the surgeon told us we would likely never have to deal with it again, but 'if' it did come back, he would just remove it again. Great. Brain tumour = no big deal. I recall, however, a resident doctor who spurted out something about 15yrs. That always stuck in the back of my head and bothered me, but I figured that if it came back in 15yrs science would have improved enough to cure it.

When it returned 3 1/2yrs later he had his second surgery and the same surgeon told us we would follow up with radiation this time to 'kill it for good'. The radiation oncologist told us that they always come back, but radiation would keep it away for 10-15yrs. Again, great. No big deal then.

Just over 1yr later it was back once again.

Now we were with a new oncologist as he started chemo, and he never spoke of timelines. By this time I had started my own research and had what I felt was a more realistic idea - though we never gave up the notion that he could be 'the one' to shock the stats and just keep on ticking.

At one point when I questioned the nurse liason she said 5-10yrs would be reasonable. One year later as things progressed, she admitted maybe 3yrs was a more likely estimate. As of March last year she said a year give or take. In a month he was gone.

False hope? Lack of knowledge? Crap Shoot? I think it's a mix of the above. That said, the stats I found weren't far off (though it took me a while to do the research thanks to that same who advised us against it), so who knows.

The thing we tried to focus on was that, we are all getting there some day, and we may as well make the most of it while we're here - not easy to do with death seemingly staring you in the face or a more 'defined' timeline than most, but we did our best, for which I am thankful (though I will always wish we had more time . . . )

~C~ (sorry for such a long comment!)

Suddenwidow said...

Thank you for the thought provoking post, Supa, I didn't have the same experience as you or Chelsea, as Austin died suddenly, and he'd repeatedly promised me that he'd live until 90. My family and I were definitely reminded on that day(and every day we've lived without him), that we need to live our lives fully every day and not leave the important things unsaid or undone. But I find it hard to remember to live this way. I still don't live in the moment very well, or appreciate all the time I'm given with my sons, my family, my friends. You'd think that I be much better at it, since I know very clearly how life can change in an instant. Why is it so hard to live in the moment and appreciate all that life gives us everyday? Maybe I just need to be more mindful of it. One more thing to add to the list :)

Christian Sinclair, MD said...

Thanks for the insightful post on how patients and families look at the doctor's prognosis. As a hospice and palliative care doc who is not afraid to talk about prognosis with patients and families, I have had a lot of time to reflect on what the true role of prognostication is.

While I agree that accuracy is an elusive goal, it doesn't mean that an honest AND educated appraisal of prognosis lacks value.

I have come to see a prognosis as a road map giving everyone a good idea of what may lie ahead. But the important part to remember is a road map is valuable even if you go off the planned course. A prognosis is valuable even if it is wrong. It gives one an idea of if things are doing much better or worse than expected.

Take this non-death prognosis: Your rash should improve in 5 days with this cream. If it improves quicker, maybe the cream wasn't really doing anything and there fore wasn't needed. If it fails to improve in 5 days then you know it is time to re-evaluate the diagnosis and the therapy.

I hope that makes a little bit of sense. It would probably make much more sens if we were at a cocktail party and able to have a back and forth about it and not just my monologue!

Supa Dupa Fresh said...

Christian, this is a tricky and multifaceted issue for the family and the patient and I feel my post was quite clunky. Your insights are valuable.

I think for Gavin and me the worst part was just having to adjust our "plans," such as they were, so many times. It was more like our mindset, our framework.

I don't really fault any of the doctors or hospice staff for their own estimates, and I'm not really sure I could have used prognostic information better or lived well with it.

Given my preaching about how we live with the promise of our own mortality, I need to do more self-examination on this issue.

What do I really want to know and how would I live with it better? Thoughts for another day.

X

Supa

Roads said...

They never gave us timelines, but then Jenny never asked. And in this country, they tell you nothing until you do.

Just before the last New Year, our Macmillan Cancer nurse told me privately (when I asked) that it would be weeks rather than months. That was no surprise.

6 weeks later, Jenny was dead. And maybe the hardest, cruellest part of all was having that information when she didn't know herself.

Supa Dupa Fresh said...

Roads, Yes, that's another hard part of the whole thing... the differences between what Gavin and I expected/thought/believed. The stress of being separate or having to lie or conceal, or just stay quiet. I remember that, too.
Thanks!
X
Supa

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