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Jay Lake
Date: 2009-11-05 05:37
Subject: [cancer] Seeing the surgeon today
Security: Public
Tags:calendula, cancer, child, family, health, personal
Seeing the thoracic surgeon today. calendula_witch could not be here, so ginastonge is stepping up to be my eyes and ears. I'm amazingly calm this morning. The pot is boiling, but quietly.

On my walk I was thinking about the things I'm afraid of. Some of them are valid, many are emotional responses to the ongoing stress of the situation. Oddly, I'm not particularly afraid of dying (though that's certainly not in the cards at the moment anyway, as anything more than the usual risks of showering, driving the car, etc.).

Things I am afraid of in surgery, chemo and beyond:
  • Losing my ability to write

  • Losing my sexuality

  • The clouding of my thoughts

  • Endless fear

  • Allowing myself to become a victim

  • The processes of chemotherapy

  • That I will be playing whack-a-mole with cancer for the rest of my life

  • That I will keep hurting those who love me by never getting well

  • Leaving the_child, calendula_witch and my parents behind

  • Not being able to be me any more

In truth, the list goes on and on, but most of it boils into the above points. I continue to face it down and move on, because in truth, what else is there to do? A close friend who is a double cancer survivor says, "I don't wear the pink hat." I suppose I wear the pink hat when I talk about this, but what I want most is normalcy, and I am afraid that is gone forever.

Today I find out more. More information is always better.

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User: cypherindigo
Date: 2009-11-05 14:07 (UTC)
Subject: (no subject)
Jay, Take it one day at a time. Besides, You can't leave yet, I haven't met you in person to get a hug and a book signed....OK given a choice, I would rather have the hug.
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User: lotusice
Date: 2009-11-05 14:27 (UTC)
Subject: (no subject)
It may run over you like a steamroller

but it still doesn't define you.

thinking of you and hugs.
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User: ozarque
Date: 2009-11-05 14:44 (UTC)
Subject: (no subject)
Good for you for being calm; being frantic isn't a good emotional state for medical visits. And good for you for writing that list down instead of just letting it run on a self-talk loop in your head. Written down, it's a physical object over which you have complete control; you can tear it up, cut it into pieces, scribble all over it, crumple it, whatever you want to do to it.

All my best wishes for good news today...
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User: aprilhenry
Date: 2009-11-05 14:47 (UTC)
Subject: (no subject)
My thoughts and prayers are with you.... April
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Elf M. Sternberg
User: elfs
Date: 2009-11-05 14:52 (UTC)
Subject: (no subject)
Since you are also a rabid secularist, I will only hold out hope that you you get the finest doctors and the best of care. I think you'll always be you, Jay, and "you" will abide within for as long as the challenge of chemo.

Oh, wear the pink hat. As long as you're walking around wearing the pink hat, you're winning.
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User: scarlettina
Date: 2009-11-05 16:10 (UTC)
Subject: (no subject)
Besides, it's a fetching color for someone with his complexion.
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Elf M. Sternberg
User: elfs
Date: 2009-11-05 16:34 (UTC)
Subject: (no subject)
Yes, but can you imagine the clash of the hat and one of his shirts? Angry fruit salad does not begin to describe it.
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User: shelly_rae
Date: 2009-11-05 20:26 (UTC)
Subject: (no subject)
Clown barf.
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Jay Lake
User: jaylake
Date: 2009-11-06 02:56 (UTC)
Subject: (no subject)
Tell us what you really think!
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shelly_rae: Sassy
User: shelly_rae
Date: 2009-11-06 03:06 (UTC)
Subject: (no subject)
Actually Clown Barf is a particularly fetching color Astrid creates in her dyed yarns. I just love the name.
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User: magentamn
Date: 2009-11-05 15:00 (UTC)
Subject: (no subject)
>That I will keep hurting those who love me by never getting well<

This is often a problem in chronic illnesses and disabilities. Not that you *will*hurt people by being sick, but that you will be afraid you are hurting people, or disappointing them, or letting them down. Have you looked at lj communities or other forums for people living with chronic illness? How about the essay on spoons?
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User: twilight2000
Date: 2009-11-05 15:09 (UTC)
Subject: (no subject)
Not being able to be me any more

It all boils down to this one - and you've taken so many steps to keep that from being true, if anyone is able to get past this one, you are.

You don't need to wear the pink hat - clearly venting the pink stream is doing well for you.

Keep it up, man. At some point, you'll get to laugh at the gods :>.
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User: jess_ka
Date: 2009-11-05 15:23 (UTC)
Subject: (no subject)
Hugs, Jay. And more hugs.
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User: aitchellsee
Date: 2009-11-05 15:44 (UTC)
Subject: (no subject)
[lurker sends silent, supportive thoughts and admires your talent for pinning down the various facets of what's eating at you instead of going all Spla! and running around like a bird that no longer even has a head to hide in the sand.]
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Peter Hollo
User: frogworth
Date: 2009-11-05 15:50 (UTC)
Subject: (no subject)
More information is always better.

Hugs are good too!
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Christopher Kastensmidt
User: ckastens
Date: 2009-11-05 16:16 (UTC)
Subject: (no subject)
Always rooting for you.
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AmmitBeast, The Dweller in Amenta: elusive geek
User: ammitbeast
Date: 2009-11-05 16:22 (UTC)
Subject: (no subject)
Keyword:elusive geek
Another lurker here.

We meatsacks typically say things to friends and family stricken with cancer that are ultimately inadequate.

So I'll simply say good luck and my thoughts are with you.

Okay, maybe one other thing.

You're a writer. Probably the best thing you can do is exactly what you're already doing.

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Kari Sperring
User: la_marquise_de_
Date: 2009-11-05 17:00 (UTC)
Subject: (no subject)
Big hug.
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User: manmela
Date: 2009-11-05 17:26 (UTC)
Subject: (no subject)
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User: cathshaffer
Date: 2009-11-05 18:13 (UTC)
Subject: (no subject)
Have you looked into support groups? A lot of them meet right in the hospital or clinic. There you can get support from people who have been through all of the above.
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User: anghara
Date: 2009-11-05 18:19 (UTC)
Subject: (no subject)
It's okay to be afraid of these things. They are frightening. What you are doing - and doing fairly successfully so far, from where I'm sitting - is facing these fears down as htey rear their ugly Medusa heads and you are not allowing them to turn you into stone.

I'm sending as many good vibes as I can. I don't know if you are planning on Orycon, but I hope to be able to talk to you then if you are. In the meantime, sending virtual hugs -
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User: martianmooncrab
Date: 2009-11-05 18:38 (UTC)
Subject: (no subject)
I suppose I wear the pink hat

You should have a competition to design you the bestest pink hat ever. Jay Lake style.
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The NewroticGirl
User: newroticgirl
Date: 2009-11-05 19:29 (UTC)
Subject: (no subject)
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markbourne: pogo
User: markbourne
Date: 2009-11-05 19:48 (UTC)
Subject: (no subject)
Thoughts, hope, luck, affection, concern, respect, big nods re normalcy. To crib from William Faulkner, you will not only thrive, you will prevail.
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User: e_bourne
Date: 2009-11-05 21:07 (UTC)
Subject: (no subject)
I like reading books about things. I'm a copious digester of facts. Perhaps you are too? At our house, we say we are adjusting to the "new" normal. Whatever that may mean.

Old normal is gone. Grieve for it, gnash your teeth and curse your cancer, spit with rage, then get over it and live. Which is done now, every day. Live like you mean it. And I know you are extremely excellent at that. So figure out your new normal, and live every day.

With love and hugs.
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User: deborahjross
Date: 2009-11-06 00:54 (UTC)
Subject: (no subject)
Keyword:crone with wreath
Some of these fears remind me of the 5+ months I spent at bed rest for premature labor. I'd had 4 miscarriages after my first daughter was born, and was terrified of losing this one, too.

But also:

--if I'm lying in bed all day, every day, what happens to my relationship with my first child (age 6)? I can't walk her to school, play with her, tuck her into bed, watch her swim or do gymnastics. I'm losing out on months of her life ...

--if I'm not allowed to do even isometric exercise, am I still a martial artist? a dancer? a competent person? me???

-- incredible guilt for having erotic dreams (anything that increases pressure on uterus = bad = baby killer)

--even more guilt for "not being a good enough mother" to prevent the previous miscarriages

--not being able to write (just too difficult lying on my side) or care for my family or do a lot of things for myself

--depending so heavily on family and friends for even simple things

PS In the end it was all worth it. That baby, Rose, is now 24, and a pre-med student at San Jose State.

Edited at 2009-11-06 12:55 am (UTC)
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shelly_rae: Triathlete
User: shelly_rae
Date: 2009-11-06 03:34 (UTC)
Subject: (no subject)
See, I don't wear the pink hat because the first thing anyone should know about me is that I'm a witty, interesting person (right? right.). Normal? I don't know from normalcy but I know me. I don't fight or conceal the fact that I earned the pink hat (and matching socks) but neither is it the first thing I want anyone to know about me. I don't ask to be treated differently because I have a pink hat in my closet. Hmm, what color hat do I get for TBI?

You're being you when you talk about cancer and fears Jay. That you share your life so openly on the screen with us is a generous gift. That's not wearing the pink hat that's honesty, normalcy. Wearing the pink hat is like so many things we do to express identity. Wedding rings, pink triangles, bumper stickers, yellow ribbons to name a few. But I'm not just a cancer survivor, I'm Shelly Rae. I don't run triathlons to prove something to cancer, I do them for myself and yes, to have fun. I admire and understand the pink hat crowd--but I'm not that girl. I'm more of a cowboy hat kinda girl, or maybe a surf bucket, or even a huge straw sun hat.

Cancer has taken hopes and dreams from me as you know. But look at me. Go ahead, now don't smile like that, see? Still me. Unless I was supposed to be a rocket scientist...hmm hadn't thought of that. Dang it. Where was I? Stupid TBI. Oh right...I had a point other than the one on top of my head...
Your fears are valid emotions--express them--we'll be here to help you carry that weight. I shan't reply to your bullet list. You know my responses already.

I play whack a mole and expect to do so until it whacks me...get to do the testing next week in fact. So sometimes I break things and rage into the night, and more often I go for walks with my friends in early morning sunshine and think about houses, stories, and what's for breakfast.
hugs to you Mr. Jay.

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Jay Lake
User: jaylake
Date: 2009-11-06 14:00 (UTC)
Subject: (no subject)
Thank you, dear.
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