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[cancer] Learning to live with limitations, and why I talk about it so much - Lakeshore
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Jay Lake
Date: 2009-12-22 05:57
Subject: [cancer] Learning to live with limitations, and why I talk about it so much
Security: Public
Tags:calendula, cancer, health
Much of this cancer game is about learning to live with limitations. I realize that for some people that is a lifelong process, but this is a new issue for me. I retain ambitions that it might not be permanent. As alumiere says in her post on living with pain and adversity, Jay has hope that he'll get through chemo and life will return to some semblance of normal, even though there will be huge changes for him. Nonetheless, here I am today, and here I will be through at least July.

My immediate issues right now are surgical recovery. By and large, they improve almost day to day, though sometimes I do play the two steps forward, one step back game. Our trip to Seattle last weekend set me back a bit, frankly. But this whole issue of resource management, "spoon theory", will apply just as strongly during chemo, which I am starting in two and half weeks. So for the sake of my own sanity I am viewing the surgical recovery process as contiguous with the chemo experience. You might call it Session Zero.

One of the hardest elements of this for me to manage is my sleep needs. In the days after the partial thoracectomy, I was sleeping as much as twelve hours per day. Much of that was drug-induced, but that's also what the body does with trauma — it shuts down so that resources can be spent on healing. These days I'm down to about seven and half or eight hours per night, plus one to two naps per day, plus a fair amount of laying about quietly in the name of spoon management.

And it's driving me nuts.

I'm used to sleeping six hours a night, waking completely rested and energetic, and charging into my day. Let me tell you, I can get a lot done in eighteen productive waking hours per day. Day jobbery. Writing. Parenting. Household chores. Pleasure reading. I'm down to about fourteen or fifteen waking hours right now, and losing about two or three of those to spoon management. It's like losing a freaking hand or something, in terms of impairing my productivity.

And this is what I have to learn to live with. For slightly different reasons, chemotherapy will have much the same effect on me. I don't know the severity, or the cycle yet, but it will quite likely be something like this. I am learning to live with the limitations. A lot things just don't happen the same way around here any more. Housecleaning, laundry, garbage removal. I still haven't rehung the smoke alarm from last week's garlic bread incident. (It's live, just sitting on the kitchen counter instead of hanging over the doorway.) The Genre car needs to go back to the mechanic, has for weeks, simply hasn't happened.

What I have guarded jealously is my writing time — an hour a day — and my exercise time — 30 minutes to an hour a day. I must keep my purpose going. That is who I am.

As to why I write about this stuff in such detail, even the difficult and weird stuff, like depression and sex; I suppose there's three reasons.

One, I am an external processor. I babble my way through my troubles anyway. In most of my life, that amounts to a lunchtime chat with kenscholes or time with calendula_witch. Most issues don't need a continuous, public airing. The journey of cancer, and its seemingly endless ramifications, has utterly taken over my life. So my need for external processing has amped up. I am a writer, so I write. I would write about it even if you weren't reading. This could be called the "selfish attention whore" modality.

Two, documentation. This is a hell of a journey. Millions of people make it every year. And almost no one talks about it. So again, I am a writer, I write. For some of you, this is research and reference for your own work. For others, it's a reflection of life experience in your own circle of friends and family. For others, it might simply be a look into a difficult place. But by documenting this, I expose mysteries and secrets and horrors and shames. That eases my burden, and it (hopefully) increases understanding. Consider this the "peer learning" modality.

Third, because too many people are wrapped in silence, and my words help them. I didn't know this when I started cancer blogging, and I rarely mention it as I go along, but I get emails, comments, letters; some weeks almost daily. People write and say, "Now I know what my father was going through, though he would never talk about it." Or, "I have two years to live, and you've helped me explain things to my family." Or, "We went through this with our son, and it really helps me to hear how you've handled it." I get emails that break my heart. I get emails that lift my heart. But it's become almost the most important reason for me to keep being so clear, so honest, so out there on this. Because cancer and its discontents are largely silent diseases, at least in terms of the individual experience, and I can loan my voice a while to those who have not yet found their own words. Consider this the "speaking to cancer" modality.

If you're still reading, what does all this say to you? How do you read my cancer journey? I admit to unseemly curiosity.

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russ
User: goulo
Date: 2009-12-22 14:07 (UTC)
Subject: (no subject)
Having been used to your blogging approach (philosophizing and/or emotionally venting about whatever seems important or interesting going on in your life, regardless of whether some people might think it's inappropriate or surprising or shocking), the fact that you blog so directly about cancer doesn't surprise me at all, nor does it surprise me that various readers have found it interesting or helpful in various ways.

I would be more surprised if you were silent about it.
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lazy_neutrino
User: lazy_neutrino
Date: 2009-12-22 14:09 (UTC)
Subject: (no subject)
I read, though I don't tend to comment because I have nothing to offer that is of any concrete value (I've not found that wishes or prayers count for anything). I have lost a mother and a stepmother to cancer, and I'm glad you are writing about it, even though sometimes your posts, like today, make me cry.
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mevennen
User: mevennen
Date: 2009-12-22 14:12 (UTC)
Subject: (no subject)
I think that for me there is a lot of familiarity, particularly with Trevor's experience. With Charles, his death was so soon after the discovery of cancer (they operated in an emergency, found it was a brain tumour, and he died 3 weeks later) that we didn't go on the journey, although they were starting to talk about chemo/radio. Trevor's path - insertion of ports etc - was much more familiar.

I am thankful not to be facing this battle in this household at the moment, and I wish you weren't. I think you're extremely brave to be blogging in such detail and I think I understand why: it is what I would do myself.
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Lawrence M. Schoen
User: klingonguy
Date: 2009-12-22 14:12 (UTC)
Subject: (no subject)
How do you read my cancer journey?

I read (and occasionally comment) because I consider you a friend. I don't give a fuck about the cancer. Yes, the posts about the disease and how you deal with it are interesting, but I already know all that I want to about cancer. I lost one brother to cancer. My other brother came down with the same kind ten years later and because he was older and other advances had been made, he beat it. Cancer also took my maternal grandmother (the only grandmother I have any memory of). So, fuck cancer. I'm not here for that.

I'm here because of you. Because somewhere in my house (don't know here, since we moved) there's a waffle prop. Because I have a wedding present copy of Rocket Science signed by a couple dozen people who all insist they're Jay Lake. Because of both quiet and loud conversations we've had. Because you robbed me of wearing Hawaiian shirts at conventions (I was doing so years before I met you, but you just do it so much better that it made sense to admit defeat and move on). Because you've edited me, I've edited you, we've published one another, and we still talk.

Oh, and one more thing: fuck cancer.
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wldhrsjen3
User: wldhrsjen3
Date: 2009-12-22 14:21 (UTC)
Subject: (no subject)
I read your cancer journey as a way of understanding what my mother went through, and my grandmother, and all my great-aunts. My mom fought stage 3 colon cancer six years ago and won - though it left its scars and a lingering unease. She was so afraid of complaining that she rarely spoke about it, so your openness gives me a better understanding of the process. And, because the threat of cancer looms on the horizons of my own life, I like to read your journey because it gives me courage and inspiration.

So, thank you. And I continue to wish you all the best. :) May your healing go quickly and smoothly.
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(no subject) - (Anonymous)
Jay Lake
User: jaylake
Date: 2009-12-22 14:47 (UTC)
Subject: (no subject)
You know me well...
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e_bourne
User: e_bourne
Date: 2009-12-22 15:33 (UTC)
Subject: (no subject)
Cancer is a thread in my family. I read your journal first, because I care about you. Second, because I know what happened to many people in my family and I'm curious to see correlations. Some things are scary. My sister's port disengaged and she nearly bled to death while her husband was out shopping. A nurse-neighbor saved her life because she couldn't think to call 911. My mother was fine all through chemo, except for initial vomiting. Didn't bother her a bit.
My brother continues to struggle. So I watch and hope you will be fine. My mother survived and went her five years as my sister is doing now, after another scare last year. But she's fine and lives a normal life now. So it's doable. And that's my message to you. Normalcy is attainable at the end.
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Jay Lake
User: jaylake
Date: 2009-12-22 15:45 (UTC)
Subject: (no subject)
Thank you. What I'm slowly coming to terms with is that normalcy is not only attainable, it can be (re)crafted at need.
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User: ex_kaz_maho
Date: 2009-12-22 15:35 (UTC)
Subject: (no subject)
Keyword:gnashers
I always read these entries, even when there is little time in my day. I love your honesty. Writing is telling the truth (sometimes through the medium of fiction/lies, but still...), and I see this as you telling your truth about what you're going through. I admire that.

Like you said:
This is a hell of a journey. Millions of people make it every year. And almost no one talks about it.

Yes, exactly. Have you read GRACE AND GRIT by Ken Wilber? It contains excerpts from his wife's journals, as she went through multiple cancer treatments. I should warn you that there are no 'happy endings' to this book - not in the physical/survival sense - so it may not be what you need right now. And yet it is a HUGELY uplifting read. The heartbreaking honesty from both partners & the effect on their relationship. It's also an amazing book about philosophy and spirituality, but you'd expect that from Wilber (who I'm a big fan of, anyway).
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Jay Lake
User: jaylake
Date: 2009-12-22 15:37 (UTC)
Subject: (no subject)
I have not read the Wilber. You're right, this is probably not the time for me to do so, but it sounds worthwhile.
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mcjulie
User: mcjulie
Date: 2009-12-22 15:40 (UTC)
Subject: (no subject)
I read because I like you and I want to know what happens to you. I read because I like reading what you write. And I think that you using your powers of observation and wordcraft on the experience of cancer and cancer treatment would be fascinating and enlightening anyway.

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cathschaffstump: nightmares
User: cathschaffstump
Date: 2009-12-22 15:48 (UTC)
Subject: (no subject)
Keyword:nightmares
I read this experience because I see this as one of the most human of experiences, and you're right--no one talks about it.

I've referred a couple of friends to your pages as they struggle with loved ones who have cancer. You give them an insight in a way that someone observing from the outside can not.

If some small good can come from your situation, that's one aspect of it.

Happy holidays, Jay.

Catherine
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User: joycemocha
Date: 2009-12-22 15:50 (UTC)
Subject: (no subject)
I read you because you're a friend; I read you because, like you I'm an active person juggling a lot of things and even the slightest impairment throws me off, so I want to see how you do it; I read you because my closest familial cancer experience was so very different from yours.

But mostly, the cancer. Realistically, I dread it in my future (having lost two parents to Cancer), so, being the morbid person I am, I want tools to help me should Cancer come to visit me. I also want to know if I can help (right now is probably a good time if I were to visit as I'm probably past incubating any germs from the kids) and I want to at least lend online support to your struggles.

Because I support your open discussion of cancer and what cancer is, and how it changes lives, I read and think about your cancer posts. We hide so much from cancer and what it does to our lives that reading your experiences is useful to me.

(and, dear God, how on earth can you stand to stay still, active and busy as you are?! I guess I've not been so sick that restless wandering isn't an option--I've always had the spoons for that. It takes drugs to keep me from getting up and wandering around the house in a daze when I don't feel well and can't concentrate well enough to do anything)
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User: the_ogre
Date: 2009-12-22 16:09 (UTC)
Subject: Hmm.
In a meta sense, I read this as ongoing biography, much in the same way that I see most of my friends' journals. Stuff happens, you write about it, people comment, the next thing comes along.

In another sense, I do see this as you processing the changes that are going on; this is how you do things. As you are not only a writer, but a good one, you are very much able to explain the stuff going on internally - and that helps me figure out how to react, in the sense of "my friend is going through tough times and from his writing about it, needs to hear/see/do X", and this gives me ideas as to how I, as a friend, can help.

I also see it as essentially life-affirming - you are very definitely not going to stop fighting this, regardless of what direction it takes - and that is comforting to me, both as a good friend who'd like you around for a long time, and as someone who is at risk for cancer (having had it on both sides of my family).




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Kari Sperring
User: la_marquise_de_
Date: 2009-12-22 16:51 (UTC)
Subject: (no subject)
Mostly I see this in terms of you . For research reasons I read a number of cancer memoirs some years ago (there are a number of well-known British ones, notably those by John Diamond and Justine Picardie). So what matters here is how you're doing. Another friend has just had horrendous news on her treatment. You are doing splendidly and that is heartening. May it always be so.
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scarlettina: Cancer
User: scarlettina
Date: 2009-12-22 17:45 (UTC)
Subject: (no subject)
Keyword:Cancer
I read your journal because you're my dear friend and I care about you. I'd read it whether or not cancer was a part of it.

How do I read your cancer journey? I read it as a road of dreadful discovery, a Hero's Journey of a sort--you will come out of this stronger and wiser. And your observations, your writing about this experience help me understand what you're going through so I have information and tools to help you deal with it if I can, if it's needed. On rare occasions you make me laugh about it. More often than not, you provoke my empathy and make me think very hard about all this stuff.

Some of it, as I'm sure won't surprise you, helps me understand what my mother went through when she fought cancer. You answer questions that I was too terrified to even think about when she was ill. Your thoughts about cancer help me process my own. As you face your fears, I'm confronting years of issues of my own that have been very carefully and specifically compartmentalized.
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sheelangig
User: sheelangig
Date: 2009-12-22 18:12 (UTC)
Subject: (no subject)

You have been forced to go down a road that every one fears. Most people on this road go quietly, in hopes of not attracting more goblins. Your deliberate response to this is to stomp and shout and *LAUGH* all while shining bright lights into the corners, so every one can see what's really there. You are kicking arse and taking names. You are a Hero.




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sheelangig
User: sheelangig
Date: 2009-12-22 18:13 (UTC)
Subject: (no subject)

And, I read your blog because I like you.
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