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Jay Lake
Date: 2011-07-29 10:32
Subject: [cancer] Wishing for a different future
Security: Public
Tags:calendula, cancer, child, health, personal
Several folks have pointed me towards the most current xkcd, which talks about cancer and survival rates in that inimitable xkcd fashion.

I know exactly what he's on about.

In April of 2008 I was diagnosed with primary colon cancer. In May of 2008 my colon was resected, and I was told we'd gotten it. They were so confident that I wasn't even prescribed chemotherapy to follow up.

In April of 2009, my lung metastasis was first detected. After months of testing, argument and second opinions, my left lung was resected in November of 2009. I was told we'd gotten it, and prescribed a course of chemotherapy that ran from January to June of 2010.

In the post-chemo scans of July 2010 a liver metastasis was detected. My liver was resected in September of 2010, and we discovered that the metastasis was diagnosed in error. I was told we'd gotten it.

In the routine scans of April, 2011, another liver metastasis was detected. I was prescribed a second course of chemotherapy, which was interrupted after four infusions so that my liver could be resected again in July of 2011. In my post-operative consultation with the surgeon this past week, I was told we'd gotten it.

I pointed out to him that I had repeatedly heard that before, yet like a B-movie zombie, the cancer keeps returning. His face fell, and he commented that of course we hadn't surgically addressed the systemic disease, but we'd met our surgical goals.

It. Just. Keeps. Coming. Back.

I'm a fairly optimistic person by nature, but these past few days I've been struggling emotionally. I recognize this for what it is — post-operative depression compounded by the enforced idleness of my surgical recovery — but the roots are real. I only have a 30% chance of surviving the next five years. That's a real statistic that really applies to me, and to this damned disease that will not quit.

This most distresses me in two ways.

One, [info]the_child is five years from graduating high school. I very much want to be a presence in her life, with enough health to be engaged, at least until she launches into young adulthood. Chemo strips my ability to engage, so while it's 30% likely I'll live to see her graduate high school, it's also quite likely I'll spend much of that time debilitated and disabled. Not much of a dad for her.

Two, if I just keep getting sick over and over, I despair of ever building a strong life partnership. Since [info]calendula_witch left me, I've lost an enormous amount of my emotional self-confidence, and no longer trust my relationship judgment. What I thought I had with her was so misaligned with the reality, especially under the distortions of chemotherapy. Combine this with the fact that since April of 2009, I've had about six weeks of time when I wasn't under either severe mental/emotional stress or severe medical stress from the cancer (specifically the weeks before last April's scan that pushed me back down this road again). I've simply not been myself, not been emotionally or physically able to date, make social, emotional and sexual connections.

I don't mean that I feel lonely and socially isolated. Far from it. But I have neither the confidence nor the energy to work toward finding another core relationship. And if the cancer keeps coming back as it has so relentlessly year after year, I may never have those things again.

Is it any wonder I'm depressed?

I know once I get back to writing and Day Jobbery, probably early next week, this mood will lift. When I am engaged in my busy-ness, I don't have time to be maudlin. But right now I'm looking at the years of my life and realizing there's a very good chance I'll never really get back what I am, who I am, and what I want most.

That's just hard to accept with peace, grace and dignity.

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User: jackwilliambell
Date: 2011-07-29 18:11 (UTC)
Subject: (no subject)
Dude! Dark night of the soul much?

I know I thought of you when I saw the XKCD thing. It really cut kind of deep. I remember how I didn't actually listen to the doctors when they talked percentages to me about Anita. I'm good at math, maybe, but not so good at looking directly into the void. When I finally accepted the dark math I was angry at the world for weeks. Months.

Right now I wish I was there so I could punch you in the arm all manly-like and then sit silently until you wanted to talk. I'm here if you do.
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User: martianmooncrab
Date: 2011-07-29 18:29 (UTC)
Subject: (no subject)
Not much of a dad for her

Dadness is not based on 100% of your health, but 100% of you being Dad... having lost my own Dad to an accident, those last few months were precious to me, because my Dad was still Daddy. He was still the grumpy guy who expressed his displeasure at being in ICU by giving me the finger when I wouldnt break him out of there... totally my Dad to the end!
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The Empress of Ice Cream
User: icecreamempress
Date: 2011-07-29 21:40 (UTC)
Subject: (no subject)
Yes. As someone whose mom was chronically ill for years before her death when I was 12, and whose dad was chronically ill (and required my care) for years before his death when I was 46, I still feel that I am lucky to have gotten better parenting from them than some of my friends did from parents with strong physical health.
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Andrew Trembley
User: bovil
Date: 2011-07-29 18:29 (UTC)
Subject: (no subject)
My uncle has been living with cancer for over a decade. "Living with cancer." Now that's an odd phrase, and one that I wouldn't have expected to even consider saying when I was younger. "Living with AIDS" became current a lot quicker. People expect modern science to get rid of cancer quickly. People expect cancer that's not "cured" quickly to be an instant death sentence.

But for a lot of survivors, it's somewhere in between.

I know if you come out of this stage clean, you're still going to come out of it changed. I hope you come out of it intact enough to to be happy.
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Katherine Sparrow
User: ktsparrow
Date: 2011-07-29 18:41 (UTC)
Subject: (no subject)
Man, that's some staring into the abyss, super hard stuff. I hate cancer. I hate what it does to people.
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User: fjm
Date: 2011-07-29 18:45 (UTC)
Subject: (no subject)
I know it is't enough but there are people here (I'm one) who love you.
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User: swan_tower
Date: 2011-07-29 19:03 (UTC)
Subject: (no subject)
I wish I had something vaguely helpful to say, but I don't even know what that would be; I'm speaking up mostly because a silent chorus of support isn't nearly as good as an audible (visible) one.

We are here for you, in whatever ways we can be.
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User: cypherindigo
Date: 2011-07-29 19:07 (UTC)
Subject: (no subject)

Remember that the medications that you are taking can also effect your moods/emotions, both in the taking and the withdrawl. Kind of like what opiates do to your excretory system. :-)

You are worried about your daughter, talk to her. I can imagine that she is trying to hold it together for you. Get screaming pissy mad together because it isn't fair; just try not to break up the house too much.
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Reynardo the Red
User: reynardo
Date: 2011-07-30 02:21 (UTC)
Subject: (no subject)
Nicely said - and I agree. You don't have to have grace, peace and dignity all the time. If you did, we'd be really worried about you.

Maybe get the child to hit an Op shop (thrift store) and buy up a few dollars worth of really ugly china figurines, then equip the pair of you with sledgehammers and goggles and long-sleeved shirts, and go on a destruction spree.
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User: deborahjross
Date: 2011-07-29 19:18 (UTC)
Subject: (no subject)
My friend Bonnie says her cancer support group talks about "dancing with NED," NED being "No Evidence of Disease." Sometimes it's a delicious tango, other times it's more like a madcap polka with a gorilla, or a scene from The Red Shoes. But you keep dancing because the alternative is worse.
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curious Eve
User: curiouseve
Date: 2011-07-29 19:47 (UTC)
Subject: (no subject)
Your writing about this is so pure and eloquent; thank you for sharing it.

I lost my mother in a motorcycle accident when I was 10. I lost my husband to an accident after 1 1/2 years of marriage. I lost my grandfather to colon cancer when I was 28. I am most at peace with my grandfather's death, mostly because I had several months to adjust to the idea and to spend some time with him, even though it was in a rest-home type setting and not out and about, as we both would have preferred.

Yesterday I unexpectedly received some carbon copies of letters my grandfather had sent me during the 2-3 years prior to his death. I can hear his voice, and I read his advice and his humor with different eyes, 13 years later. I'm so grateful for our time together, and I really got to see what a great person he was, and how kind.

May I humbly suggest that you consider writing some things down for your daughter that she may read later. Things that maybe she is not ready to hear yet (advice about deep primary-relationship stuff comes to mind). It may help you, and it may help her. It may not help a lot, but if it helps a little, it's probably worth the time and energy.

I wish I could take some of your pain away. What a horrible, tragic thing, to know that your chances of surviving more than a few years are so low. I find it hard to imagine, and I have no idea what I would do, or how I would bear it. I hope the best for you.
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Gary Emenitove
User: garyomaha
Date: 2011-07-29 20:20 (UTC)
Subject: (no subject)
This is one reason why people seek out religion.

The logic and facts of a situation such as yours can be overwhelming. I can hardly read this myself without breaking down...I cannot imagine what you are experiencing.

So, many (most?) seek out their own personal invisible friends and spirits to soothe them. They seek out a community of like-minded folks who also speak with the invisible friends and spirits. There's strength in numbers, so everyone feels better. And when one of the like-minded folks eventually takes an off-ramp described in xkcd, the others then proclaim how lucky that one is, now to personally be in the presence of their invisible friends and spirits.

Apparently, it can become quite intoxicating. There are a lot of steeples out there.

For those of us who lean more towards the scientific and concrete, life is one big (hopefully long) experience, which includes interactions with family, friends, and foes. Your life has included some exceptional interactions and will continue to do so, even if you're sometimes a little less yourself.

A lot of folks love you and some of us have you right up there on our Most Unforgettable Persons list. I'll take you over an invisible friend any day.
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Kenneth Mark Hoover
User: kmarkhoover
Date: 2011-07-29 20:29 (UTC)
Subject: (no subject)
You aren't doing anything wrong. You are being a 100% dad for her right now. That is the most important thing because that is something she will remember for her entire life.

I will not be around forever for Matthew and Patrick. No parent will no matter how hard they try. So we have to be a 100% dad while we have the time, and hope our children will pass that down to their children.

As writers we take it for granted that we need to pay forward. We pay forward in life, too. And that's exactly what you are doing.

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User: outerego
Date: 2011-07-29 23:43 (UTC)
Subject: (no subject)
"I will not be around forever for Matthew and Patrick. No parent will no matter how hard they try. So we have to be a 100% dad while we have the time, and hope our children will pass that down to their children."

This is so true--I didn't realise how much influence my Dad had on my life until after he was gone, and just how much he did for me. He was always 100% Dad, from the beginning to the [sudden] end.

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User: mcjulie
Date: 2011-07-29 21:03 (UTC)
Subject: (no subject)
That's just hard to accept with peace, grace and dignity.

You don't need my permission, but I think it's okay if you accept it with anger, punk rock, and making a fool out of yourself.
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User: emmainfiniti
Date: 2011-07-30 13:10 (UTC)
Subject: (no subject)
I second this.

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Elizabeth Coleman
User: criada
Date: 2011-07-30 16:13 (UTC)
Subject: (no subject)
What Julie said. Do not go gentle into that dark night. One of my favorite things is the Spanish concept of duende. It's this hard to define passion that flows from a person's pain and imperfections and mortality. An intense, often ugly outpouring of authenticity. Leonard Cohen's Hallelujah is overflowing with duende. So is The Specific Gravity of Grief. Duende is neither peaceful nor dignified--it carries truths that dignity seeks to hide.
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User: jetse
Date: 2011-07-29 21:29 (UTC)
Subject: (no subject)
Don't know what to say except: keep fighting the good fight.

Man, I want to see you at the 2044 WorldCon on a panel about fiction saying: "Back in my days, we submitted by paper."

Take care!
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Nicosian: don not taunt the octopus
User: nicosian
Date: 2011-07-29 21:31 (UTC)
Subject: (no subject)
Keyword:don not taunt the octopus
I thought of you and more than a few I know on the same mad horrible highway when I saw that strip.

And I refrained from blowing my top when someone went "see, proof science isn't interested in cures!"

I know one person who's 5 years out and another who's 20 some on the leukemia survival lane. And I know what it's like to have doctors give you a stat, that you repeatedly fall on the wrong side of.

mine isn't a life or death stat, mine is a "have a kid/not have a kid" stat. 3 losses. no explanation for all three, 70% chance of success. I liken it to getting in a plane three times and it goes off the runway each time, but everyone tells you that it won't happen again. you start looking for alternate routes. I spent much of last year in a very deeep deep fury after the third and screw grace and peace, i figure, you, me, and people I know, we gotta reason to be angry sometimes.

That said, I hope there's a long long road of smooth sailing for you now.
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Jay Lake
User: jaylake
Date: 2011-07-30 00:13 (UTC)
Subject: (no subject)
I've been down your road as well, back in the early 90s with Mother of the Child. You have my profound sympathy and understanding.
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User: joycemocha
Date: 2011-07-29 22:48 (UTC)
Subject: (no subject)

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User: scarlettina
Date: 2011-07-29 23:38 (UTC)
Subject: (no subject)
I don't know, Jay. When I saw you with the_child the last time I was there, you were pretty well engaged. I think you underestimate the impact of mere presence. I know you want to be more than merely a presence, but I also see where she seems to want to spend most of her time, and how she talks about you. I think your presence and engagement makes even more of an impact than you realize, even when you don't think you're present. She's taking agency in her relationship with you. I don't think you need to fret about it as much as you do, though I understand why you do.

As for the rest, all I can say is you're my friend and I love you, and I'll support you in whatever you need or want.
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User: madrobins
Date: 2011-07-30 00:30 (UTC)
Subject: (no subject)
Nothing to say except: I send love and support.
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User: makoiyi
Date: 2011-07-30 01:26 (UTC)
Subject: (no subject)
My mother had cancer. She refused to die until she'd done what she wanted to do. The power of will is an amazing thing. Your daughter is of an age where she will cherish her memories. My son's daughter - he passed away in may - is only three and will remember little of him. The bitterness comes because life is so bloody unfair sometimes. I don't blame you the bitterness, but cherish every moment if you can. They are always too short.
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User: punkrocker1991
Date: 2011-07-30 01:42 (UTC)
Subject: (no subject)
My thoughts are with you. I hope you're able to enjoy whatever time you have, whether it is 5 days, 5 years or 50 years. And I hope that at the end you are surrounded by family and friends and loved ones. I think you deserve this.
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User: keikaimalu
Date: 2011-07-30 04:54 (UTC)
Subject: (no subject)
But right now I'm looking at the years of my life and realizing there's a very good chance I'll never really get back what I am, who I am, and what I want most.

I so get this, Jay. It's an awful feeling. But remember that it's just a feeling. The future isn't written yet. Yours *could* be brighter than you can possibly imagine.

I very much hope you beat the odds. But for however long you're on this Earth, I have no doubt that you make yourself a positive and important presence in the lives of your loved ones. There are plenty of people who never manage that, no matter how long they live.

Not sure if this helps at all -- I hesitated to write it -- but odds are about 100% that 150 years from now, all of us here will be gone. Death may pick and choose timing with individuals, but in the long run, it doesn't discriminate at all. No matter who goes first, we all end up in the same place eventually.

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Renegade Vagabond
User: khaybee
Date: 2011-07-30 05:53 (UTC)
Subject: (no subject)
I love you with all that I am and I will do anything you ask to make your life better for you.

Sorry I can't actually help.
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Perdix: silence
User: perdix
Date: 2011-07-31 05:57 (UTC)
Subject: (no subject)
I lost my father five years ago to a rare and very aggressive form of metastatic salivary gland cancer. One day while he was undergoing treatment he apologized to me for the fact that - as he saw it - he wasn't being much of a father to me. I was speechless and quite frankly horrified. Of course I was angry and sad (by turns) about the cancer itself, but it NEVER occurred to me that my dad wasn't being 100% my dad. I told him truthfully that he was the only dad in the world I wanted, no matter what. In that respect, at least, the cancer was incidental. I would bet a considerable sum that your daughter feels the same way, and every bit as fiercely.
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