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Jay Lake
Date: 2011-09-22 05:39
Subject: [cancer] The gentle subtlety of a sledgehammer to the skull
Security: Public
Tags:cancer, child, health, personal

Mostly these days I just trundle along. The mortal terror and high anxiety I’ve been through during past phases of my cancer journey isn’t a daily feature of my life lately. I don’t need to pull over the car for a crying jag, I don’t have panic attacks. As I’ve mentioned before, the human mind’s capacity to routinize anything is truly astonishing.

Still, sometimes events or the comments of other people pull me back into a difficult headspace.

This isn’t my news to share in any detail, but a friend who has a very similar cancer situation to mine was just given a diagnosis that is probably terminal. Specifically, a new round of metastases in an inoperable location. This, of course, could happen to me at any time. Precisely so. It’s what killed another friend of mine last spring, also with a very similar cancer situation to mine. I’ve been lucky that my metastases so far have been discrete, single tumors in easily accessible locations (lower lobe of left lung and right lobe of liver). All I need is a tumor in the liver stem and I’ll be doing short term end-of-life planning.

And there’s absolutely nothing I can do to control or prevent this.

Yesterday, Mother of the Child and I met with [info]the_child‘s new therapist that she’ll start seeing next week. She’s having typical teen transition issues, plus working through her identity as a transracial adoptee, plus dealing with my cancer. She needs this. MotC and I spent an hour going through [info]the_child‘s life history, our marital history, our current living arrangements, my health issues, our assessment of our daughter’s life issues and so forth. The therapist, charmingly blunt, finally said, “It really sounds like you’ve done everything right. You’ve got good parenting, good living arrangements, she’s in the best school she can possibly be in for her needs.” Then she looked at me with my 30% five-year survival rate and said, “But if you die in the next few years, all that good work goes swirling down the drain.”

That’s telling it like it is. And there’s absolutely nothing I can do to control or prevent this. That five-year timeline for survival? That’s how long it will take her to make it through high school.

At this point, other than the cancer, I border on disgustingly healthy. For a chemo patient, I am disgustingly healthy. I can do a lot to take care of myself to improve my tolerance of and response to surgeries, chemo and (if needed at some point) radiotherapy. I can do a lot to take care of myself to be available to my daughter, to have the energy to write my books, to be connected to family and friends, and to live in the world.

But my ability to control what actually happens next in my cancer?

Spitting in the wind.

As I said to my therapist yesterday, “Hey, I could take up smoking! It doesn’t matter now.”

We are all mortal. Everyone dies. But my chess match with death is in a very different state that most of my peers and age cohort. Most days I just shrug and move on. Yesterday, the fact that I can see the end game a few moves away, and the absolute lack of control I have over when that end game takes place, was hammered home with all the gentle subtlety of a sledgehammer to the skull of a slaughterhouse pig.

Sorry, no quiet wisdom or life lessons in this one. Just me thinking aloud about the fundamental brutality of living with cancer.

Originally published at jlake.com. You can comment here or there.

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User: dionysus1999
Date: 2011-09-22 13:17 (UTC)
Subject: (no subject)
There is wisdom here, Jay.

We're all mortal, accepting that idea in a deep personal way is terrifying. But I could easily die in a car crash tomorrow. Facing death would seem to be an important goal for people to truly live.

Knowing what will (likely) kill you could be a comfort to some people.

I recall a discussion with a friend with a family history of genetically inherited disease, which killed many of her relatives including a parent. I think I damaged our relationship by pointing out that at least she knew how she would likely die.

What seemed a comfort, knowing your death, was not for her. Reminds me of Pullman's Dark Material's, there was a world where people knew their deaths as ghostly companions. Some people found their deaths to be a comfort while others would flee from them.
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mlerules: labyrinth
User: mlerules
Date: 2011-09-22 13:42 (UTC)
Subject: (no subject)
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User: adelheid_p
Date: 2011-09-22 13:55 (UTC)
Subject: (no subject)
Well, I certainly hope the therapist didn't say that verbatim. There is something to be said for the prior years of good parenting that will, in the end, help the_child navigate through this no matter what happens to you. My own adopted mother checked out mentally (paranoid schizophrenia) when I was about age ten and believe me when I say that my teenage years weren't easy ones to endure (I was also bullied). I do believe that I owe my survival (I wouldn't say I thrived during that time but I'm really doing pretty well now.) in some part to the fact that the first ten years of my life weren't as unstable parenting wise as the last 8 (of my childhood). I don't think the_child is as fragile as some children and she certainly has very good critical thinking skills and a level of maturity that will help her in the long run. I am rooting for you to f*ck the cancer. I really don't think it was helpful to anyone (except perhaps the therapist's long term finances) for her to say that to you. (Actually, I'm kind of angry about that now that I think about it. If she's a therapist, don't you think she'd know you were going through your own issues with this and the_child etc, and think about not heaping a little more stress/guilt into the picture?)
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Jay Lake
User: jaylake
Date: 2011-09-22 14:02 (UTC)
Subject: (no subject)
I didn't actually take that as a bad comment. For one thing, I prefer blunt. I'd been pretty blunt with her about my health issues, for the sake of expediting the discussion. And the sad truth is, no matter how well prepared the_child is or might be, losing me in her adolescence will be brutal and miserable.
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User: joycemocha
Date: 2011-09-22 14:09 (UTC)
Subject: (no subject)
Luckily, while she's at a delicate point, she's also pretty resilient. She's a tough kid, and tell her that from me. I admire her brilliance and creativity!
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User: adelheid_p
Date: 2011-09-22 14:36 (UTC)
Subject: (no subject)
I'm glad to know you were okay with it. In my opinion there is a difference between honest and unnecessarily brutal. But everyone has a different line and it is good to know that this didn't cross yours. :-) I don't doubt it will be difficult for the_child if she loses you in her adolescence, but I do think that, in the end, she will be okay. Father's are more important, to some extent, during this time but there may be others who will be able to fill the father figure role in various instances.
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curious Eve
User: curiouseve
Date: 2011-09-22 15:40 (UTC)
Subject: (no subject)
The therapist's comment doesn't seem that bad to me either, but I almost always appreciate bluntness. She is saying that the situation for your daughter is critical, and from everything you've said, that's true. I wish your daughter the best, so much so that if I prayed, I would pray for her.

Your words ring in my ears: Living with cancer is fundamentally brutal.
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russ: zen
User: goulo
Date: 2011-09-26 13:01 (UTC)
Subject: (no subject)
"all that good work goes swirling down the drain." -?!?!

I hope that in context that was merely rhetorical exaggeration.

Reading it now out of context I thought "WTF!?!? That is totally bogus."

Yes, of course it would be awful and painful for the_child if you die soon. But it's absurdly counterproductively wrong-headedly incorrectly pessimistic to think that it would mean "all that good work goes swirling down the drain", as if all that parenting through all those years would make no difference, as if the result would have been indistinguishable from if you'd been an abusive parent, or if you had abandoned her, or whatever. Good work and good preparation has a lasting effect.

Not to mention that the therapist's statement (out of context, to my eyes as a reader) sounds as if the_child is a powerless straw in the wind who would have no choice but to collapse after your death, as if she has no will or strength or capabilities of her own...
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When life gives you lemmings...: Flaming spanner
User: danjite
Date: 2011-09-22 14:10 (UTC)
Subject: (no subject)
Keyword:Flaming spanner
Ah, but you have a strong self-generated internal moral compass, so you still can't take up smoking: It is a morally indefensible, self-centred act which is a waste of money,and would endanger the_child's long term health through direct action and example, and thus inconsistent with your values and persona.

Besides, you would smell like ass.

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User: chessdev
Date: 2011-09-22 15:00 (UTC)
Subject: (no subject)
I lurk more than post here but all I can say is I'm rooting for
you to be in that survival group.

There are so many so-called men out there who put their dicks into everything and pump out men -- but cant be bothered to actually raise them or know their kids.

You have already shown your daughter, by example, good traits for life even if she doesn't know it yet. I'm hoping you'll be alright, but I also want to say I respect from what I've seen in your strength to deal with this and still be a dad to your daughter.

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scarlettina: Furious
User: scarlettina
Date: 2011-09-22 15:06 (UTC)
Subject: (no subject)
“But if you die in the next few years, all that good work goes swirling down the drain.”

As you can imagine, this subject presses some pretty sensitive buttons with me. I wrote a long screed about this therapist's clear underestimation of the_child's ability to cope, her personal strength, and why I thought all your good work wouldn't "go down the drain," and then deleted it. In short, this therapist has not made a friend of me. ;-)

In short, what I have to say from experience is this: To suggest that what the_child has got now is the most fragile of constructs ready to collapse given a single push is ridiculous and patently untrue. Everything the_child has been through up until this point has prepared her for what may--or may not--come. And the longer you're here, being the father I know you are, the more prepared she will be. I have no doubt that, should she lose you, it will be terribly difficult for her to navigate and she will need time to heal. But to suggest that all your work will be for naught is patently false and you have to know that. I'm living proof that my parents' work made a difference. Yours will, too--and does, every single day.
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User: keikaimalu
Date: 2011-09-22 15:48 (UTC)
Subject: (no subject)
Not sure I think much of a therapist who tells you that all your work goes down the drain if something happens that you can't control. She might think she's being blunt and honest. I think she's being unnecessarily cruel, not to mention oversimplifyingly pessimistic.

And I don't believe it's true. To be honest, I believe most of the necessary work was done before your daughter hit 5 years old, and it sounds like you & her mom did that work really well. I'm not saying losing you wouldn't be horrible for her, just that the work you've done till now, the work you still do, *counts.*

On another topic -- what are you doing that keeps you so healthy, as a chemo patient? I'm curious.
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Jay Lake
User: jaylake
Date: 2011-09-22 20:46 (UTC)
Subject: (no subject)
what are you doing that keeps you so healthy, as a chemo patient?

Exercising a minimum of 30 minutes a day without fail, except the mornings I am on the chemo pump. That, and eating rationally, and not also having any complicating co-morbidities. Plus, honestly, I think a lot of it is my almost unstoppable mental energy.
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User: kellymccullough
Date: 2011-09-22 16:48 (UTC)
Subject: (no subject)
Seriously, Fuck Cancer!
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User: deborahjross
Date: 2011-09-22 20:35 (UTC)
Subject: (no subject)
Kids have a rough time when parents die.

It's worse when the kids has no preparation (as in murder), no resources, and no help afterward. Your daughter has or will have all of these. She'll learn to navigate the emotional landscape of her grief and find you forever in her heart.

That said, she'll likely have a wonderful dad for a long, long time.
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