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[personal|cancer] Trying to keep up - Lakeshore
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Jay Lake
Date: 2010-08-16 05:30
Subject: [personal|cancer] Trying to keep up
Security: Public
Tags:books, cancer, endurance, health, personal, travel, writing
"Trying to keep up" seems to have been my recent theme. Keeping up with the logistics and details of our forthcoming trip to the antipodes. Keeping up on yesterday's Kelly Point hike. Keeping up with my sleep. Keeping up with the final read-through of Endurance.

Sleep is all over the map. Along with peripheral neuropathy, fatigue is one of the only chemo side effects still dominating my life, here two months after finishing the FOLFOX/Avastin regimen. (Other side effects still appear in blivets, around digestion, sexual function, etc., but they are not constant.) Apparently, if I have a low-key day, I can sleep six and a half to seven hours and be fine, nearly my old pre-chemo pattern. In those situations, my internal alarm clock has returned. That is to say, my pre-chemo time awareness that allowed me to select a wake-up time and then simply wake up without the aid an alarm. If I have a physically or emotionally stressful day, I can sleep as much as nine hours. In either case, waking is a longer, slower process than the 'spring out of bed and go! go! go!' rubric under which I used to function.

Which continues frustrating, to say the least. Much as I no longer take the stairs two at a time going up, I am still missing something that feels like it was an important part of me.

One of the lessons I am currently taking from this third occurrence of cancer, rightly or wrongly, is that I may never get back to that six hours per night, two-stairs-at-a-time life I had. I think I'm preparing myself for cancer to be a chronic condition. That is not to say I'm ceding so much as an inch in the medical fight, but I've been making myself crazy trying to be the person I think I should be instead of the person I am.

I do not want to let cancer to redefine me, but in blunt terms, it has. This is the struggle I recently referred to about not accepting limits but learning to live within my limitations.

My surgical oncologist may be right. We may be managing this for years. My medical oncologist is still aiming for a full cure. She may be right. I don't know. What I do know is this thing keeps Not Going Away, in an increasingly spectacular and invasive fashion. Medical science prunes my body one organ system at a time, then cancer calls around and takes a shot at another one.

So I pursue surgery, second opinions, treatment options, improved understanding. I reorder my writing schedule and life priorities. I wonder if this month right now prior to the next surgery is the best health I'll ever see for the rest of my life. And what do I do but go on, trying to keep up?

Because giving up is never an option. But keeping up gets damned hard some times.

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User: cypherindigo
Date: 2010-08-16 12:53 (UTC)
Subject: (no subject)
Keyword:don't quit
One day at a time. I know that it sucks, but sometimes that is the way it has to work or you will drive yourself bat-sh*t crazy.
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cathshaffer
User: cathshaffer
Date: 2010-08-16 13:42 (UTC)
Subject: [personal|cancer] Trying to keep up
cancer is not redefining you. It is identifying the core of you that is unchanged in good times or bad. There's a great Firefly reference to be made here. You should get the DVDs and catch up. You'll love it. :-)
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Kari Sperring
User: la_marquise_de_
Date: 2010-08-16 16:09 (UTC)
Subject: (no subject)
Well, I'm hoping with your medical oncologist. Best wishes.
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martianmooncrab
User: martianmooncrab
Date: 2010-08-16 18:20 (UTC)
Subject: (no subject)
Some of the best coping skills I learned in chronic pain management. The most useful one was giving yourself permission NOT to do things that you used to be able to do, or the same level of doing things. My breaking point was the dishes, I used to do them daily, now, they will get done, just not all at once.

Pick your battles, the victories are sweeter that way.
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User: joycemocha
Date: 2010-08-16 18:24 (UTC)
Subject: (no subject)
You know, this adapting to a chronic medical condition takes time. Getting used to the limits of my dietary-induced asthma takes time and still runs into glitches (see, Indian restaurant scenario). Adapting to arthritic conditions took time as well.

What you may be dealing with is a flare and remission scenario, where things go well for a while, and then you have to deal with health. Here's hoping that the surgery will put paid to your current rounds with chemo and that you'll be in remission for a while (flare and remission is how we deal with the son's Crohn's, for example, as well as asthma).

It's a royal PITA, but it beats the alternative.
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Anna Feruglio Dal Dan
User: annafdd
Date: 2010-08-16 21:01 (UTC)
Subject: (no subject)
I went through something similar with depression. When I had the Major Depression, as compared to the chronic one, I sort of went under, and when I came back up, lots of things had changed.

It took me a long while to stop being furious about them. I am still pretty angry, and I think the medication is keeping me from being angrier still.

I now can sleep basically for the whole day, if I don't stop myself. Without medication, I can't stay awake for more than four hours, and even with medication, eight is my maximum. I can do about 50% of what I used to be able to do. If I go grocery shopping I have to then lay down and rest for hours.

I still don't know what caused it, and whether it will go away. My metabolism was radically changed (I put on 20 kg during my two spells of Serious Antidepressants).

Seven years on, I have learned that this is the new me, and I might as well live my life as best I can, but there are still moments when I am bitter for the person I was. Among other things, I have lost the ability to write enough. My writing career is to all intent and purposes dead, which is a pity because it never started in the first place. Maybe it was never in the cards.

See? I can get bitter. But the point is, with time you learn to accept your new abilities and value the things that you learn to do despite or because of them, or just because you become older and wiser.

Cancer or depression or old age, in the end we are all robbed of our energy and sprint. But in the end, beats being dead.
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Jay Lake
User: jaylake
Date: 2010-08-17 15:42 (UTC)
Subject: (no subject)
Cancer or depression or old age, in the end we are all robbed of our energy and sprint. But in the end, beats being dead.

Well, yes. I never lose sight of that.
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