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Jay Lake
Date: 2010-06-15 16:39
Subject: [cancer] The long, slow hello to normalcy
Security: Public
Tags:cancer, health
One thing I'm still wrestling with, significantly so, is managing my expectations with respect to coming off of chemo. When I come off the needle this coming Sunday, I'll be done. Except I won't.

First of all, I have the same two-week post-infusion cycle. Which is to say, horrendous fatigue, disastrous lower GI behavior, the same nine yards I've been experiencing with ever-increasing intensity for the past five and half months. So while my brain will be thinking, "Hey, chemo is over!", my body will actually be more stressed than ever.

I don't expect to see even the beginning of bounceback until I pass into the second weekend. Which happens to be the weekend of JayCon X, my tenth annual 37th birthday party [ jlake.com | LiveJournal ]. So another big psychological lift, but only beginning to crawl from the wreckage physically.

Meanwhile, the recovery timelines will unfold at their own pace. Immune system bounceback will come in fairly short order, as I've never really crashed out my blood chemistry. Fatigue bounceback will unfold in July, though I won't be surprised if I have issues for months to come. I'm told to assume body toxicity for three months, so that's September. I have no idea how the cognitive stuff will reset, but I'm hoping for fairly swiftly once we stop pumping drugs into me. As for peripheral neuropathy, anything up to two years or possibly permanent. And lower GI has been strange ever since the colon surgery in 2008, so I do not know what recovery curve to expect there. Most importantly, my writing brain, which is already hammering at me, and just wants enough energy to express itself. So that recovery probably ties in with the fatigue bounceback.

All of this gives a very elastic definition of "over" as in "Hey, chemo is over!" And in a sense, it will never be over. It's not like I get to walk away from cancer. Every three months for a CT scan, all the other followups.

So I'll be eager and excited next Sunday afternoon. And I'm just as likely to do a faceplant as anything else. I must guard against frustration and even anger as the days flow by and I'm not immediately my old self. I know better, I really do, but this will be the long, slow "hello" to normalcy, which will return not like the sweeping tide, but like the summer rain, one drop at a time.

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Lady Jestocost
User: ladyjestocost
Date: 2010-06-16 00:15 (UTC)
Subject: Recovery
I had an injury a few years back which took a couple of months to get over. This is nothing like what you've been going through, but I wanted to say that I found it useful not to think about how far I was from 'normal' but to think about how I'd felt two weeks before (two weeks before I couldn't get out of bed, now I'm sitting up, two weeks before I couldn't walk to the mailbox, now I can walk to the end of the block, etc).

Two weeks seems to be for me, a sufficient amount of time to show significant improvement. YMMV.
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User: leela_cat
Date: 2010-06-16 00:16 (UTC)
Subject: (no subject)
I'll hope along with you that your journey back to normalcy includes the writing brain coming online at full capacity sooner rather than later in that long, slow journey.

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User: mmegaera
Date: 2010-06-16 02:45 (UTC)
Subject: (no subject)
If this turns out to be anything like my recovery from shoulder surgery a few years ago, you're going to be cheering every tiny improvement you notice. And you'll be noticing things that you never dreamed you'd be noticing.

Every little bit will be an encouragement. Just you watch, Charlie Brown.
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