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[cancer] More detailed thoughts on mortality - Lakeshore
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Jay Lake
Date: 2011-12-28 07:17
Subject: [cancer] More detailed thoughts on mortality
Security: Public
Tags:calendula, cancer, child, family, health, personal, writing
Recently I observed:
It occurred to me recently that one way to think about my cancer risks is that we're all dying, I'm just probably dying a little faster than most of my peers.

Somewhat in parallel to that and a few days later, [info]klwilliams remarked in comments to another post of mine:
I realized what mortality *meant*: you don't get to find out how all the stories end.

She really struck a chord for me with that observation.

[info]the_child and I have occasionally discussed the hypothetical of whether one would choose to live forever, if one could. (These conversations began even before my initial cancer presentation, and have recurred from time to time since.) She and I both think we would choose that, even at the obvious emotional costs, simply because we both want to see what happens next, next and next after that. We want to know how the stories come out, in short. Where the new ones come from, how the current ones evolve, how they all end. Or not, for stories don't really end. They just turn into new stories.

For my own part, I made it through the first round of cancer in 2008 so quickly and with so much surprise that I'm not sure I ever took it truly to heart. My oncologist at the time told me my cancer was unusual and very unlikely to recur — I was given 99% odds of not experiencing any metastasis. I went on with my life, happy and confident that we'd beaten it.

When my lung metastasis was detected in 2009, we spent months dealing with and arguing the diagnosis. The oncology team literally didn't believe their own clinical evidence both at first, and for quite some time after as we pursued additional tests. The recurrence was very much a surprise to every one. Still, I went through the lung surgery and the subsequent non-adjuvant chemotherapy in the first half of 2010 convinced we were going to beat it, and I'd be fine.

The upset and emotional disaster of the departure of [info]calendula_witch from my life at the end of 2010, followed a few months later by the diagnosis of the liver metastasis I've just concluded chemotherapy for, finally broke my already battered optimism. At a fundamental level, I've gone from believing that I would beat this to believing that this disease is going to claim me in the not very distant future.

I'm not talking about depression, or a difficult emotional reaction. More like a baseline conviction that I've already lost the game and we're just playing for time. To be clear, this is neither my clinical diagnosis nor prognosis. At the moment, I am considered to have "no evidence of disease following resection." That's the clinical diagnosis. My prognosis is a 70% chance of recurrent metastasis.

It's probably coming back.

And deep in my heart, I believe it will get me.

This is why I flash on stuff like being irritated because I don't know if I'll live long enough to see both halves of The Hobbit movie. Whenever this comes back, if the metastasis is in the 'right' place, we can treat with resection and chemotherapy, but I'll lose another productive year out of my life as I've lost much of the last two years. If the metastasis is in the 'wrong' place, i.e., not surgically resectable, I'll receive life extension therapy but my time will likely be counted in months from that point. Even if it is in the 'right' place, there's only one more chemotherapy option available to me. After that, all the metastases are in the 'wrong' place, resectable or not. In effect, every scan I go through is a death lottery for me. (The next one of those is February 14th.)

So the mortality is always there. I'm not dying right this moment any more or less than you are, but like I said, on the whole I'm probably dying rather faster than most of my peers. And [info]klwilliams put her finger on it. I won't see how the stories come out. The stories of my parents' lives. The story of my daughter's growth to adulthood. The stories of my own characters, their fictive worlds and desires. The stories of my friends, my loved ones, everything. Even movies I care about.

In a sense, I'm already mourning what isn't even yet guaranteed to come. My convictions are emotional, not based on logic or clinical evidence. But they are strong, bone deep. I've been battered too long, too many times, endured too many losses to cancer already, to believe that I'm getting out of this one clean at this point.

I can remember when life seemed like it would go on and on. I miss those days.

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cathshaffer
User: cathshaffer
Date: 2011-12-28 15:30 (UTC)
Subject: (no subject)
I remember a time when I, too, would have chosen to live forever, to always see what comes next. Now that I've started the process of paying that emotional price, I realize it is intolerable. I simply couldn't outlive everyone I love, over and over and over again. Think about it. Living forever would mean attending your children's funerals. And your grandchildren's. And great grandchildren. It would mean forming new attachments only to lose those loved ones, too. It would mean trying to figure out if it's worth getting a new puppy for the 100th time, when all too soon it will be time for that last trip to the vet. Loss leaves tracks on our heart that can't be erased. This, I now understand, is why old people so often seem so sad. I don't want to live forever. I'm not sure I even want to live longer than average.
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torreybird
User: torreybird
Date: 2011-12-28 16:32 (UTC)
Subject: (no subject)
Exactly this, and more: Time wounds all heels, and I'm no exception. End of life is not scarier than life everlasting.

In my late 20s, one of the kindest men I know pointed out that I had spent half my concious life in active disbelief of my own mortality, and the other half in active anger that someday I would die. "I need to go out there," I said, "and do the hard work of love. And there's not enough time."

I still suffer from not enough time. My consolation, lately, is to make sure I'm all used up when my clock runs out, whenever that will be.
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mlerules: hedgehead
User: mlerules
Date: 2011-12-28 15:32 (UTC)
Subject: (no subject)
Keyword:hedgehead
Can you only undergo one of each type of chemo treatment in your lifetime?
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Jay Lake: cancer-scars
User: jaylake
Date: 2011-12-28 15:53 (UTC)
Subject:
Keyword:cancer-scars
In effect, yes. And my particular variety of cancer has three standard treatment courses.
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Autopope
User: autopope
Date: 2011-12-28 16:25 (UTC)
Subject: (no subject)
Any cancer cells which survive a particular type of chemotherapy are immune to it. If you undergo treatment A and then treatment B, any metastic cancer that crops up is already immune to both A and B so you need to go on to C.

New cancers take a long time -- years -- to proliferate from a single malfunctioning cell, so there is virtually no possibility that you've been struck by lightning twice and that it's a new cancer that has only gotten started after finishing treatment A and which therefore isn't immune to treatment A ... unless many years have elapsed. Hence the rule of thumb that you're not declared cured of a given cancer until five years after it was extirpated.

On the up side ...

Jay's been undergoing treatment since 2008. The longer he holds out, the greater the probability that a new treatment will make it into clinical use. So there are only three chemo strategies available now, but if he can hold out until, say, 2013 or 2014, something new may come along. I hope.

Edited at 2011-12-28 04:26 pm (UTC)
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mlerules
User: mlerules
Date: 2011-12-29 05:06 (UTC)
Subject: (no subject)
Thx for info.
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nancyfulda
User: nancyfulda
Date: 2011-12-29 08:51 (UTC)
Subject: (no subject)
>>The longer he holds out, the greater the probability that
>>a new treatment will make it into clinical use.
>>So there are only three chemo strategies available now,
>>but if he can hold out until, say, 2013 or 2014,
>>something new may come along.

This. This is what I hope, too. There is some very fascinating research in the pipeline, and when it moves, I believe it will move fast.
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cathshaffer
User: cathshaffer
Date: 2011-12-28 16:43 (UTC)
Subject: (no subject)
Yep, living forever is unappealing to me. But I do want at least my alotted three score and ten, and it's a terrible thing to be potentially facing death at a younger age. There's no upside to that.
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mcjulie
User: mcjulie
Date: 2011-12-28 17:28 (UTC)
Subject: (no subject)
I won't see how the stories come out.

That's exactly it. I can't pretend to really understand what you're going through, but when I think about my own death, that's exactly the thing that bothers me.

But still, when you do make it to part II of The Hobbit, we should have a big effin' party.
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Jay Lake
User: jaylake
Date: 2011-12-28 17:37 (UTC)
Subject:
I'm all for a big party!
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mcjulie
User: mcjulie
Date: 2011-12-28 17:56 (UTC)
Subject: Re:
It's a plan, then. The Big Jay Lake Hobbit Part II bash. What the heck, we should have a party when Part I comes out. What's Portland's nicest first run theater?
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Jay Lake
User: jaylake
Date: 2011-12-28 18:16 (UTC)
Subject: Re:
First run theatre? Hmm, we'll have to find out. I go to Clackamas mostly, which seems fine.
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shelly_rae
User: shelly_rae
Date: 2011-12-28 18:12 (UTC)
Subject: (no subject)
I've spent most of my life mourning for the loses cancer brought me. Children, family, love. But living with cancer is the life I have. My cancer had almost 100% morbidity when I was diagnosed in 1981 and it stole years of my life then. Instead of taking 4-5 years to get a degree it took me 10. I'll never have kids and I cannot adopt. Cancer came back again and again and it will probably kill me. Cancer gave me a relationship with you and eventually took that away too. </p>

Unlike you, I've dealt with my cancers on my own. You are lucky to have community surrounding you, family to love and a daughter. The Child is a wondrous gift, spending time with her now is what is most important and would be whether or not you had/have cancer. I'm glad you figured that out.

Be well.

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mmegaera
User: mmegaera
Date: 2011-12-28 19:32 (UTC)
Subject: (no subject)
Please don't take this as unfeeling, but I have an overwhelming urge to read your thoughts on Bujold's CryoBurn.

And I want to come to that Hobbit, Part 2 party you're going to attend. It sounds like it's going to be a blast.
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Deborah J. Ross: blue hills
User: deborahjross
Date: 2011-12-28 20:17 (UTC)
Subject: (no subject)
Keyword:blue hills
One of the books that helped me through the first years after the murder was by Robert Veninga: A Gift of Hope - How We Survive Our Tragedies. One of the characteristics of people who pulled through, no matter what the specifics, was a deep appreciation for what they had lost. I wonder if you are not doing that difficult emotional work... and if so, the rest of your life will be immeasurably richer for it.
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a_cubed
User: a_cubed
Date: 2011-12-29 03:46 (UTC)
Subject: (no subject)
" The Road goes ever on and on
Down from the door where it began.
Now far ahead the Road has gone,
And I must follow, if I can,
Pursuing it with eager feet,
Until it joins some larger way
Where many paths and errands meet.
And whither then? I cannot say. "
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emmainfiniti
User: emmainfiniti
Date: 2011-12-29 04:41 (UTC)
Subject: (no subject)
Hugs.
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saveswhat
User: saveswhat
Date: 2011-12-29 06:24 (UTC)
Subject: (no subject)
I've known two people who've lived past the age of 100. In both cases, by the end, the individuals seemed unconcerned about how the stories would end. I imagine they'd seen many many stories begin and beget other stories.

So, maybe I wouldn't want to live forever. I'd like to live long enough to be unconcerned with the outcome of the stories happening around me.
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nancyfulda
User: nancyfulda
Date: 2011-12-29 09:08 (UTC)
Subject: (no subject)
>>I'd like to live long enough to be unconcerned with
>>the outcome of the stories happening around me.

That's how I feel, too.

When I was diagnosed with cancer, the thing that hurt most was the idea that I might default on people who needed me. The problem wasn't so much about not knowing how things ended as about not being there to make sure the ending was happy.

Once your kids are grown and your partner's gone and you've lived longer than 99% of humanity, I think it's easier to let go.
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Leah Cutter: Battle lines
User: lrcutter
Date: 2011-12-29 18:21 (UTC)
Subject: (no subject)
Keyword:Battle lines
Jay -- I wish you health and happiness and stressfree days and time. You're in my thoughts.
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curious Eve
User: curiouseve
Date: 2011-12-29 21:05 (UTC)
Subject: (no subject)
If I'm reading you correctly, this is the worst time (due to the chemo) in terms of feeling physically bad, so it makes sense to me that you'd be feeling emotionally bad, too.

I wonder if this bone-deep acceptance will bring you some sort of peace, and how it will change your decisions about how to spend your time.

I'm very sorry that the odds are so high that you will be cheated out of so many years. Cancer sucks.
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User: creed_of_hubris
Date: 2012-01-02 00:43 (UTC)
Subject: (no subject)
Man, you could've partly hedged your position by taking those doctors up on their 99:1 odds.

Of course there are probably "ethical regulations" preventing them from booking the wager. Maybe the receptionist could've handled it with the copay.
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