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[cancer] Wasted days and wasted nights... - Lakeshore
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Jay Lake
Date: 2010-06-08 05:24
Subject: [cancer] Wasted days and wasted nights...
Security: Public
Tags:cancer, family, health, personal
Absolute failure to sleep last night. I spent eight or nine hours in a hypnagogic state, more or less, so at least I was resting in the dark. I feel stripped like paint this morning.

It's been rougher than ever lately. I note from an old blog entry that I walked three miles the day I came off the chemo pump during infusion session one. Nowadays, walking up the block (50 yards or so) is brutal. I'm emotionally and mentally thin, while the recent additional cognitive deficits have stabilized but not recovered. A lot more tears, a bit more panic, and return of the sense that my life has been dramatically shorted. (That's not medically justified by any specific indicators or prognoses, it's just a form of cancer fear.)

The upcoming schedule is that I have the last infusion session June 18th through June 20th. I come off the needle for the last time then. I have several recovery curves to deal with, ranging from the fatigue and digestive issues (perhaps 4 weeks to something acceptable, plus more time to normalcy) to sexual and immune responses recovery (perhaps 8 weeks to sexual recovery, oddly, my white blood cell counts have held up abnormally well) to peripheral neuropathy (up to two years to recover, with possible permanent effects).

I am probably going to be back to traveling in late July, but will have to schedule around quarterly CT scans starting in July or August, plus colonoscopy and lower GI followup, and perhaps eventually day surgery to remove my chest port. I have been advised that leaving the chest port in makes the CT scans an easier process. Given what a mess my veins are after the last 26 months of cancer experience, that is highly attractive. I had some minor bloodwork done yesterday via my left arm, and due to the scarring in my veins the needle overshot and had to be pulled back, causing internal bleeding. This fairly normal for me now with an arm stick, unfortunately.

Frankly, the upcoming scans terrify me, or would if I had the energy to focus on them a little more. My history with scans is either fantastically good or fantastically bad, depending on the viewpoint I choose to adopt. I think if we find another round of metastases, I will come completely unglued. I was way too young for my original cancer (about twenty years earlier than average age of diagnosis), and I was absolutely not expected to have any metastases, given the staging and treatment at the time. It's fair to say that medical expectations of the usual course of tubovillous adenocarcinoma have been violated twice in my case already.

Cancer is made of fear, at some very basic levels. That fear has infected my family and loved ones, and it has infected me. Mostly I laugh at it, just like I laugh at most people and things that bedevil me, but this isn't publishing failure or ongoing Internet harassment or a flat tire or a chest cold. This is life and death stuff, something that can erase all my ambitions, hopes and fears and leave a hole in the hearts of others I love so much it makes me ache with grief to contemplate.

So I am afraid. I don't let fear stop me, but sometimes it is a millstone larger than the world, fatigue its sly ally.

Thank the universe for love and hope and kindness.

And sleep. Argh.

Post A Comment | 19 Comments | | Link






ozarque
User: ozarque
Date: 2010-06-08 12:28 (UTC)
Subject: (no subject)
You are in my thoughts and in my prayers -- and all of us here at LJ are with you.
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Jay Lake
User: jaylake
Date: 2010-06-08 12:33 (UTC)
Subject: (no subject)
Thank you.
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cathshaffer
User: cathshaffer
Date: 2010-06-08 12:48 (UTC)
Subject: (no subject)
You can do this, Jay! Just one more treatment left. And you are *not* going to come unglued if you have more metastases in the future (God forbid). I have watched people much more fragile than you survive such a journey. Do not underestimate yourself.

Regarding the port, those things need regular maintenance--usually flushing about once a month. Think about whether it's worth the hassle to save yourself a poke when you have a CT scan.
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Jay Lake
User: jaylake
Date: 2010-06-08 12:50 (UTC)
Subject: (no subject)
Thank you. Given my last few pokes for scans, the port may well be worth the hassle of a monthly trip to the infusion center for flushing. Something my doctors and I have not yet firmly decided on, and I'd love to have it out; but in addition to the CT scan issue having it out only to possibly need it back in next year seems idiotic. We shall see. I suspect I'll at least go through the first scanning round with it.
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cathshaffer
User: cathshaffer
Date: 2010-06-08 12:53 (UTC)
Subject: (no subject)
If only we had a crystal ball!
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Keikaimalu
User: keikaimalu
Date: 2010-06-08 15:38 (UTC)
Subject: (no subject)
Cancer is made of fear, at some very basic levels.

Yes. Absolutely. The good news is that over time, with clear test results, it diminishes. I remember some of the things I was scared of when I was undergoing treatment, and they don't scare me anymore. Your whole mind moves into another plane of thinking and feeling during that rarefied time, but it will shift again when things settle down (knock wood).

And hey, if you come unglued, you come unglued. There will be re-gluing in the future.
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Deza: How I roll
User: deza
Date: 2010-06-08 19:14 (UTC)
Subject: (no subject)
Keyword:How I roll
Of course cancer is made of fear. We all know fear is the mind-killer. We fear the unknown, and many aspects of this disease are still unknown to us.

My chemo treatments now are for an auto-immune disorder. My personal theory is I developed the auto-immune disorder from chemo treatments I had when I was diagnosed with breast cancer, at the age of 20. One doctor told me the lump couldn't be cancer because women that young don't get breast cancer. The other did a biopsy, threw me into chemo/radiation treatments, and did surgery within a month. That was 18 years ago.

I still firmly believe that being diagnosed at a statistically young age drastically improves the odds of survival afterward. The thing you have to decide is how you are going to use the time after. How much are you going to allow the physical limitations to control your life? What are you going to do to move past those limitations? That should give you plenty to think about on the nights you can't sleep.

Four years ago I was told I wouldn't live to see my youngest child graduate high school. Since then, Ive written and published my first book. I've remarried my kids' dad. I've introduced my eldest child to cons, and made sure she understands why I've always loved that environment. Since going into a wheelchair, I've trained my service dog and started regularly rolling on long walks with him.

What are you going to do?
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Jay Lake
User: jaylake
Date: 2010-06-08 19:21 (UTC)
Subject: (no subject)
What are you going to do?

In a word (or several), be inspired by you and people like you. Thank you.
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Deza
User: deza
Date: 2010-06-08 19:29 (UTC)
Subject: (no subject)
Hey, if one pudgy housefrau can be an inspriation, imagine what someone with your talent can do! ;)
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martianmooncrab
User: martianmooncrab
Date: 2010-06-08 20:49 (UTC)
Subject: (no subject)
I hope that you have a temp handicapped tag for now, they are a real help at times like these.
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Jay Lake
User: jaylake
Date: 2010-06-08 20:50 (UTC)
Subject: (no subject)
Since I can't drive these days, it's not enormously relevant... :p
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martianmooncrab
User: martianmooncrab
Date: 2010-06-08 20:58 (UTC)
Subject: (no subject)
but you ride with other folks, and the Princess Parking is fabulous!
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Gary Emenitove
User: garyomaha
Date: 2010-06-08 22:12 (UTC)
Subject: (no subject)
I just have to say: I somehow think you'd still drive better than a lot of the yutzes out there...
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User: mmegaera
Date: 2010-06-09 00:11 (UTC)
Subject: (no subject)
Keyword:garden
I am so looking forward to the positive results from your tests. It's going to be so much fun to read all the cheering.
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dinogrl: mona lisa live long
User: dinogrl
Date: 2010-06-09 01:48 (UTC)
Subject: Courage, Young Man.
Keyword:mona lisa live long

Courage is resistance to fear, mastery of fear, not absence of fear.
Mark Twain
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Krys Taylor: blackdress
User: shodoshan
Date: 2010-06-09 04:23 (UTC)
Subject: (no subject)
Keyword:blackdress
Thank you for sharing this with us. Kayla and I send you love and comfort and strength.
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User: xjenavivex
Date: 2010-06-09 04:29 (UTC)
Subject: (no subject)
just a little further now to be done with the poison
one thing at a time
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When life gives you lemmings...
User: danjite
Date: 2010-06-09 07:48 (UTC)
Subject: (no subject)
Sittin' here, reading all of it as I always adding my presence in the absence of significant words.

BTW, the new digs are great- looking forward to showing you the place soon!

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Jay Lake
User: jaylake
Date: 2010-06-09 12:16 (UTC)
Subject: (no subject)
Can't wait to see 'em!
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