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Jay Lake
Date: 2008-07-04 10:41
Subject: [cancer] “Is this concrete all around me, or is it in my head?”
Security: Public
Tags:cancer, personal

One thing I haven’t talked much about here is the emotional journey cancer has put me on. Partially that’s because I don’t yet understand it myself, and partially because I didn’t want to go fishing for the classic online group hug. Don’t get me wrong — all the incredible support I’ve received from LJ and online community has been invaluable to me. But I wanted to say something meaningful if I was going to say anything at all.

The night of May 7th, two days before my surgery, a number of friends and family gathered in a back room at DeNicola’s for a celebratory meal. It felt like my wake, though I think I maintained pretty well. The night of May 8th, having been on Fleet all day and as result finding myself achingly empty, my family again gathered at my house to keep me company. It felt like my funeral, and I maintained quite poorly.

Simply put, I did not expect to wake up from the surgery.

This was not a logical conclusion based on medical information, it was an emotional reaction to the whole situation. By then we had a pretty good idea the cancer was likely to be early stage, and the effects limited. I had absolute confidence in my colo-rectal surgeon. I had immense amounts of information, courtesy of an entire network of friends and family who are research geeks, most especially lasirenadolce. I knew the outcomes and the risks, I’d been through a lengthy informed consent process.

I still believed I was going to die.

I lied to everyone, including myself, about how terrified I was. I don’t suppose anyone was fooled, least of all me, but I lied and lied and lied in an attempt to alchemically transform my bravado into real bravery. The next morning, leaving the surgery prep unit with the anesthesiologist and his assistant, the fear caught up with me. I’d been cracking wise during the admission process, but I sobbed uncontrollably as the gurney wheeled through the halls of OHSU. I was possessed with a black, raging fear tinged with the grief of never again seeing my daughter, my parents, anyone I loved.

Waking up that afternoon was one of the most surprising things that has ever happened to me.

That a surgical cure had apparently been effected was almost beside the point. I lived. My body had more lines in it than a power station, I was miserably uncomfortable, a million things were wrong, but I lived.

Since then I’ve spent an enormous amount of time in my head. Much of it was drug-addled, but in a lateral way, not in the sense of being utterly stoned and trying to fly off the roof. Still, looking within is not a normal occupation of mine. One reason I generally move so fast through life is it keeps me ahead of the wavefront of self-doubt. My nigh pathologic extroversion was turned in on itself.

At the same time, only now am I starting not to feel crazy. The mental lacunae, the stuttering memory, the vile temper — I have hated the world and everyone in it since the surgery, most of all myself — I have sufficient external perspective to recognize these things as artefacts of the illness, the surgery, the anesthesia, and the post-operative medications. Still I’ve had to struggle through them, being some other person of very limited physical and mental energy. Querelous, unhappy, barely capable.

It’s a hell of a thing to face when you live your life on fast forward, as I do.

This stuff is very hard to talk about. Even the cancer itself is difficult enough, that disease being such a swear word. The slide into emotional instability, depression, cognitive dysfunction and memory loss is deeply embarrassing, and very difficult to live with.

I still don’t know what that time will come to mean for me, but it has put me in a very different frame of mind about my life choices, about my writing career, about the speed at which I live. However the cards fall in the end, it will be a very different game.

All is growth, all is grist, but that can be very hard to perceive from inside the clouds of unknowing. Only now am I beginning to glimpse the light.

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

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The NewroticGirl
User: newroticgirl
Date: 2008-07-04 18:06 (UTC)
Subject: (no subject)
*wiping eyes* You made me cry. I'm really glad you're not dead. Lots of people love you, Jay Lake. Lots of them.
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scarlettina: Cancer
User: scarlettina
Date: 2008-07-04 18:19 (UTC)
Subject: (no subject)
Talk about it as you can and want to; no more. Don't be embarrassed about the outward manifestations of the disease; they were not your doing. It's awful to feel out of control and okay to let others carry things while you can't. We know who you are and love you for it. For all of it.

That walk through the valley of the shadow is a hard one. We're all still here, babe. We will be for as long as you need us. And then, you know, until you can't stand us anymore.

And then, a little longer than that.

I'm glad you're seeing the light.

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User: ozarque
Date: 2008-07-04 18:28 (UTC)
Subject: (no subject)
You have had a very hard time, and it went on long enough to really mess with your head. I am so sorry you had to go through all of that misery and terror, and so very glad that you did wake up.

And if you're willing to put up with advice from an old woman, just this once: Try not to switch from living your life on fast forward to living it on fast repeat.
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Jay Lake
User: jaylake
Date: 2008-07-04 20:13 (UTC)
Subject: (no subject)
d if you're willing to put up with advice from an old woman, just this once: Try not to switch from living your life on fast forward to living it on fast repeat.

Thank you. It is hardly putting up, not all.

And yes, I'm working very hard on not setting it to fast repeat. (I'm all about finding brand-new mistakes to make whenever possible.)
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User: joycemocha
Date: 2008-07-04 18:47 (UTC)
Subject: (no subject)
I think any surgery is a slap-in-the-face wakeup call, and when you add cancer to the mix, it's a huge, monstrous life change. There's a reason why major surgery is considered to be an extreme life stressor; major surgery plus cancer is a nasty, huge challenge. You just don't bounce back pronto.

Heck, I'm only now starting to get my old DH back--and he had shoulder surgery, not cancer surgery. Add the cancer dynamic to it--(bad enough for me living constantly under the cancer shadow after having two parents die from it. I can't imagine what it would be like to cope with a diagnosis of it in myself as well; just the two flirtations I've had with possibles have rendered me weaker-kneed than anyone could expect) and you've been coping with a hella lot. Big changes, big impacts, and life just isn't the same afterwards.

I remember the anguished cry of one of my colleagues, a ten-year breast cancer survivor, when her doctor called her at school to say that there was another suspicious lump.

"I can't go through this again! I just don't think I have the strength to do it again!"

She's a strong woman, but just the thought of another dance on the cancer-go-round reduced her to whimpering, and the only thing that kept her going that day was that she had to maintain a solid face for the kids. Who, of course, knew there was something wrong.

DS's trumpet teacher just passed away from brain cancer. When it first became a possibility (it was a remission from a previous episode), his first wife left him because she couldn't cope with it again (I don't know all the issues but I had heard that was at least one part of it). He dealt with it well, with good grace, and another lady came into his life and accompanied him to the end.

God knows, if I ever go through surgery, I'll probably be as bad as you if not worse. I am a major wuss about any sort of sedation and going under for the colonoscopy was scary enough. The only thing that kept me from freaking out was that the kid survived his (and yes, I had that fear for him when he went through his). Even then, as they started rolling my bed back there I had these thoughts of "is this going to be it?"

DH does not talk that much about his surgery, but from his reactions and depression, he went through much the same thing as you are now, only lacking the shadow of the cancer. He seems to have gone through a similar assessment of life choices, similar anger and frustration at the limitations as he struggles to regain full function of that shoulder, and similar challenges to getting his old life back (talk to me privately at the Fireside, there's one thing you might want to know which may or may not be an issue. Or e-mail me.). His talk about retirement has become much more serious since then.

All I know is that the only way they could get his blood pressure down post-surgery was to let me be with him. That tells me one hell of a lot about what he was going through mentally. Once I took his hand and started talking softly to him, it went down to a level that they'd let him out of recovery.

This is a major life change for you. I'm glad you're starting to see some light, and gaining perspective. Be gentle to yourself, though--this is a big thing.
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The Green Knight: Hug
User: green_knight
Date: 2008-07-04 20:09 (UTC)
Subject: (no subject)

What you're going through it normal. No, not everybody goes through it in the same order and to the same degree, but illness has that effect. You were given very little time to adjust to the idea that you are ill, just enough for you be scared, which is probably the worst period at all.

Past experience says that the human body will need between one and two years for a major trauma to heal. Even if it appears to be fine much sooner. So be nice to your body, look after it, and don't get impatient if it needs more downtime and rest for some time yet.

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frabjouslinz: Reggie
User: frabjouslinz
Date: 2008-07-04 20:50 (UTC)
Subject: (no subject)
Being brave doesn't mean not being scared. You may have been terrified, but you went ahead and did what needed to be done, and you let others help you when you needed help. These things take courage. So does going through what you're going through now. I'm sorry it's hard. I wish I could do something more. If you hold your hand out for help, we'll all rush to do what we can. Even if it's just to hold it. Hugs to you.
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User: martyn44
Date: 2008-07-04 22:44 (UTC)
Subject: (no subject)
I know what it is like going to sleep expecting to wake up dead. Just remember, you feel what you feel. There is no 'right way' just 'your way'. The land of the living isn't anywhere but right where you are.
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User: ex_benpayne119
Date: 2008-07-04 23:13 (UTC)
Subject: (no subject)
Thanks for sharing, Jay.

I think that reaction sounds quite natural. Do you have a group of fellow-sufferers or anything? Such support groups exist out here in Oz, don't know about the US. I know from talking to others that they've often found such groups very beneficial. As much as people like me try to understand I think there's often something to be gained by having people to talk to who've been through that experience.... people who you feel understand and identify with that fear and pain you went through...

Just a thought. Congratulations, in any case, in handling it so well and getting through it.
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User: jackwilliambell
Date: 2008-07-05 01:42 (UTC)
Subject: (no subject)
SInce you aren't looking for a virtual hug, how about a virtual wry smile and a thumb's up from across the virtual room?
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Jay Lake
User: jaylake
Date: 2008-07-05 02:01 (UTC)
Subject: (no subject)
Yeah, that's good. You rode the whole ride, man. I'm so sorry.
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User: neutronjockey
Date: 2008-07-05 02:17 (UTC)
Subject: (no subject)
The slide into emotional instability, depression, cognitive dysfunction and memory loss is deeply embarrassing, and very difficult to live with.

Pssht, dude, I've done that game for years --- you're doing fine . ;)

Just keep reminding yourself that it's temporary. And keep the ones that matter closest to you --- that's what pulls me out of the deepest darks.
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User: ellameena
Date: 2008-07-05 03:24 (UTC)
Subject: (no subject)
It is hard to say that a person's emotional reaction is out of proportion to the situation when the situation is as serious as cancer...and yet...well, maybe there's actually more going on there. I wish you the best in working through this terribly difficult time. I would like to gently point out that you have judged in the harshest terms possible others who have held beliefs that you considered irrational. Maybe this is something to remember when you can't understand why someone would believe such things.
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User: ellameena
Date: 2008-07-05 03:29 (UTC)
Subject: (no subject)
If I may presume to play psychotherapist briefly...I recall that at the time of your surgery you were pretty blithe about the limited nature of your cancer, and I felt you were going through a bit of denial, honestly. I know how serious cancer can be, and I knew you did not have the information at that time to know whether you were going to have a complete surgical cure. However, that was not information you wanted or needed at the moment, and I certainly was not going to inform you of it. Is it possible that the fear and uncertainty you couldn't face regarding the cancer got transferred to the surgery? Just something I thought might help.

You are going to be feeling better in time. Six months from now this will all seem like a dream.
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Jay Lake
User: jaylake
Date: 2008-07-05 05:05 (UTC)
Subject: (no subject)
I have difficulty responding to this with grace, but I will observe I am very rarely personally offended by things people tell me in comments.

My personal irrationality as a stress response has no effect on scientific inquiry, public policy, educational curricula, child-rearing, the marriage rights of my fellow citizens or any of the other myriad things which concern me about the institutionalized, public irrationality all around me. I have certainly made no attempt to project my irrationality on those around me through the political process.

I do believe there is a difference here, of far more than degree.
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User: daveraines
Date: 2008-07-05 17:58 (UTC)
Subject: Cloud of Unknowing
I haven't experienced this kind of surgery nor what you describe as your extreme reaction afterwards. The closest I come is a phone call from my sister telling me my dad had died, very suddenly. I was an adult, I'd lived apart from him and mom for twenty years, and wondered in an intellectual way how I would feel when he died - whether at such a remove I would feel anything at all. When I got the phone call it was as if all systems shut down, I couldn't talk, I could barely breathe. And then days of grappling with the new reality, and a much longer time of readjustment.

I hope that the "very different frame of mind" leads you someplace good; deepens your writing, enriches your relationships, brightens your imagistic / mystical vision. Stopping to smell the roses. Or at least ONE rose now and then. (Perhaps even... introspection!?)

You refer to "Cloud of Unknowing" - a book that is very far from your worldview, to be sure. But I think of an influence on "Cloud," namely "Dark Night of the Soul." John of the Cross got tossed into prison by his own church, kept in a little bitty cell, forced to crawl for his food, was tortured. The book is his struggle to come to terms with the experience and live triumphantly afterwards.

Maybe you've got a "Dark Night" book gestating, written not from John's POV but from yours. (And no, your "Dark Night" cannot star Batman!)

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User: farmgirl1146
Date: 2008-07-05 18:22 (UTC)
Subject: 4 thoughts
Being brave is talking about what you fear. You are being brave.

You may as well live your life in fast forward: it won't make it any shorter or longer, but it will make it more interesting.

Life is sweeter after a brush-up with death. Thinking that you may die is good, it helps you appreciate living (know that for a fact!).

Do promise us all that you will do all the check up things, please. That will make you live longer.
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Jay Lake
User: jaylake
Date: 2008-07-05 18:34 (UTC)
Subject: Re: 4 thoughts
Oh, I am all about the checkups. I didn't go through all this just to repeat in 4 or 5 years due to inattentiveness.

And thank you.
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User: dirkcjelli
Date: 2008-07-06 22:55 (UTC)
Subject: (no subject)
I'm glad you're feeling sufficiently collected to write about this now, and am touched that you're sharing it with all of us. Illness, especially the kind of illness that we all get as we grow old, is not something I deal with well myself.
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Jim Rittenhouse
User: jrittenhouse
Date: 2008-07-07 21:46 (UTC)
Subject: (no subject)
In very late 1999, I started to have symptoms that finally were diagnosed as the harbingers of Stage I, very localized, Kidney Cancer. Less than a month later, they took out the kidney, and told me that it was small, encapsulated, and don't expect anything more from it.

A couple of years later, just before leaving for the Toronto Worldcon, the doc called up with 'your last set of tests looked weird, we need you to come back in.'

In both those situations, I was scared out of my shorts, expecting certain doom. It didn't help that my mom, in between those events, came down with a nasty cancer and died a rather painful death from it.

And the tests came back fine, but it ruined the Worldcon for me.

Another element in all of this is that like you, we have a little girl that we adopted from China - she's very bright, thinks Dad is a genius and so on - and is the absolute light of my life. At the age of 51, she's the thing that revs me up and wants me to live and to watch her grow and help her become the happiest and best she can be.

About a year and a half ago, I was diagnosed with a long-term form of leukemia; the major side-effect from it has been that my energy levels and my immune system have taken a serious hit. The docs tell me that I'll likely be around for a long time - maybe 15 or more years, they can't promise - but the things that make me sad are contemplating the loss of my family (and vice versa) and not getting to do all of the many things I want to do yet with my life.

I found that the more I was dwelling on the far end of things, the more it would color and mess up my ability to enjoy the time and the things before me. I've been through enough fear, enough anticipation of death and loss, and I realize that to do so all the time when I have no idea how much real time I have is a waste. Enjoy life, friends, love and all the things of the world.
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Jay Lake
User: jaylake
Date: 2008-07-08 02:35 (UTC)
Subject: (no subject)
Ouch. I agree with not looking to the far end. That's one of the cancer stories I haven't gotten around to telling here, because it's still in progress, but my sense of needing to do now what I need to do is sharpened incredibly. There's a far end for all of us, by definition, but living with it daily is something I only had to do for a little while. Enough to give me a glimpse of where you are.
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User: chris_gerrib
Date: 2008-07-07 21:49 (UTC)
Subject: (no subject)
My dad had the same "I won't wake up from this" fear when he had prostate cancer. That was over a decade ago and he's quite healthy.

I had a gallbladder removed (not as serious, but still surgical) and had no fear of the procedure. I have no idea what (if anything) that adds to the discussion.
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Warrior of Worry
User: warriorofworry
Date: 2009-11-05 22:02 (UTC)
Subject: (no subject)
Your courage, in mere survival and in talking about the emotional and sexual effects of what you've endured, is breathtaking.
For what it's worth, my wishes for speedy recovery, and peace (your very own break-neck version of it, of course).
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