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Lakeshore
An author of no particular popularity

Jay Lake
Date: 2010-03-29 05:31
Subject: [cancer] The roughest chemo infusion weekend yet
Security: Public
Tags:calendula, cancer, health, personal, shellyrae
Wow, was this infusion weekend just past a stone bitch. Six of twelve, six more to go, and I am dreading what comes next.

Taken as a whole, the side effects were neither particularly violent nor particularly pernicious. The actual infusion session on Friday was quite reasonable. But the fatigue was an order of magnitude greater than I've previously experienced, starting Saturday afternoon. The associated emotional flatness was overwhelming This was very, very hard on my caregivers, especially calendula_witch.

Even today, I'm sort of put together, but rather desperately wishing I could take another day off from the Day Jobbe. (I am being extremely parsimonious of taking time off, as chemo is eating all of my sick leave and part of my vacation, and I really don't want to work literally every day for the rest of the year, or screw up the New Zealand/Australia trip.)

shelly_rae points out quite rightly that I'd just gotten over the viral cold from the previous weekend, and as such my already-limited physical and emotional reserves were drained flat prior to going into the infusion center. I am certain she is correct in this, which does a bit to ameliorate my fears about the next few rounds of chemo, but still, wow, has this been overwhelming. I'm not sure I've ever been so flattened in my life, outside the context of my significant clinical depression as a teen/young adult.

It's also odd, when I pull back and look at the situation, how simply being tired can be so taxing. In a way, that's almost counterintuitive. I've certainly been through far worse passes in the process, just from a purely physical perspective. My adventures in lower GI management are a tragedy that could write itself, as I've documented along the way here, and the few times I've had total failure there have bordered on disastrous, not to mention nearly sending me into the ER. This time, just fatigue. But ZOMG, such fatigue.

And that's a side effect I don't really have any insight into how to better manage. I've learned to balance diet, medication, sleep and activity to keep the lower GI on track. Most of the other side effects I can either treat or live with. But the fatigue that just erases my brain, heart and body is profoundly discouraging. I am less and less me as this goes on.

Have I mentioned that cancer sucks?

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User: joycemocha
Date: 2010-03-29 12:49 (UTC)
Subject: (no subject)
Jay, shelly_rae is absolutely right. When we're otherwise healthy we underestimate the degree to which a minor illness such as a cold can bring us down. There's a reason why it's dreaded so severely for people in your current state of immunosuppression. BTDT with dealing with Sam when he was more severely immunosuppressed as part of his Crohn's treatment (back when he was on 6-mercaptopurine as well as the Remicade. Infusion treatment with Remicade is contraindicated during illness much the same as chemotherapy is because results are similar).

Another piece of data for you to consider is that it doesn't help that we're going through a spell of cold and wet during this fatigue.

(and I'm with you about dreading the Day Jobbe today. I got clobbered by a nasty UTI on Thursday, and ended up flat on my back for two days as a result. Yesterday was my first day back up on my feet, and I could sure use another day to recover. But I have an IEP this afternoon, and barring a weather cancellation--I'm devoutly hoping for a phone call telling me the power is out even as I type this--I've got to be at work. I never react this severely to a UTI, but this one was fast, hard-hitting, and apparently scared the crap out of not just my DH but worried the intake staff at Kaiser--something I'm glad I didn't realize until later.)
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Jay Lake
User: jaylake
Date: 2010-03-29 12:54 (UTC)
Subject: (no subject)
Take care of yourself, there.
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lotusice
User: lotusice
Date: 2010-03-29 13:12 (UTC)
Subject: (no subject)
Hey. It's not that you *are* less and less you, it's that you *feel* less and less you.

Which is no less dreadful from your perspective at the moment, but it's still you. As you yourself have said, you are not the disease, nor its effects.

You are still very much the Most Awesome Fantastic and Wonderful Jay. That has not been compromised, no matter how crappy you feel right now. Which is not to minimize the crappy, only not to minimize the Awesome.

It seems absolutely logical that you would feel flattened in the way you do right now, given everything including, as wisely said, the cold. Cut self slack. Rest as you can, including maybe worrying about the lost time off later and taking a day off today or cutting out early and just easing up on yourself right now?

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kellymccullough
User: kellymccullough
Date: 2010-03-29 13:17 (UTC)
Subject: (no subject)
Sorry to hear it's hitting you so hard right now, Jay. I wanted to take a moment to thank you for sharing your cancer stories and the related stressors and other things here. In particular thanks for how these posts have led me to spoon theory. It's been moving and educational and, as it turns out, practical for me this week. I'm recovering right now from a GI virus of a magnitude that routinely killed people in the days before intravenous fluids and reliable anti-emetics. Reading your posts has really helped me frame this in a way that is much less likely to end up with me back in the hospital later in the week from trying to do too much too fast. Thank you.
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Jay Lake
User: jaylake
Date: 2010-03-29 13:34 (UTC)
Subject: (no subject)
Whoa, dude, take care of yourself.
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kellymccullough
User: kellymccullough
Date: 2010-03-29 19:48 (UTC)
Subject: (no subject)
Doing that. I think I've slept about 125 of the last 165 hours and today I think I'm going to have the first a day in a week where calories in are equal to or greater than calories out as opposed to the formula that's resulted in losing a pound or so a day. It's been a very informative experience in a learning things you'd rather not have to learn kind of way.

And, you take care of yourself too.
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Twilight: Lwaxana Troi
User: twilight2000
Date: 2010-03-29 15:33 (UTC)
Subject: (no subject)
Keyword:Lwaxana Troi
Consider two things that might have affected this week uniquely:
1. you had a cold most of the week - instead of building up you were building *back* up - and that word is a WORLD of difference in terms of your ability to rebound!
2. you had that week off - that week you expressed some pretty intense joy about - and this is back into the fight. My experience is that "back into the fight" is a HELL of a lot harder than "into the fight" - you're more tired, you have a better understanding of how hard it is, it's a little harder to be optimistic.

Remember this as well:
only 6 to go - it's all downhill (as in the positive, skiing in a perfect sunny March afternoon kind of downhill) from here!
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barbarienne
User: barbarienne
Date: 2010-03-29 15:42 (UTC)
Subject: (no subject)
Hang in there, dude. I know it can't come fast enough, but you'll feel better eventually. How wonderful it will be when you wake up one morning and say, "Oh, yes, this is right. This is how I'm supposed to feel."

I wish magic was real and everyone's good wishes could take this burden off you and make it easier.
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Renee Babcock
User: renegade500
Date: 2010-03-29 15:49 (UTC)
Subject: (no subject)
Does your company have any kind of sick leave pool or catastrophic illness policy (or even short term disability)? I don't know how common these are in private sector, but it seems it might be worth at least asking a question or two. I can't imagine that stressing about taking the time off, when it sounds like you could benefit from it, is helping overall.
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Joy
User: cithra
Date: 2010-03-29 16:45 (UTC)
Subject: (no subject)
You are still you. The fatigue is zombifying and terrifying, while your body is remaking itself, but you will come back to yourself, I promise.

(You can hit me up for the gory details of my certainty, if you want, when energy permits.)

Edited at 2010-03-29 04:49 pm (UTC)
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Leah Cutter: True Nature
User: lrcutter
Date: 2010-03-29 17:45 (UTC)
Subject: (no subject)
Keyword:True Nature
As others have mentioned, you are still you. You haven't been diminished. You're just tired, and you will bounce back.

I woke up feeling pretty craptacular this morning -- sinus infection, I fear. And though I ache the worst part as always is the exhaustion. I feel as though my brain is wrapped in cotton and I have to fight to get any thoughts through or out. There's a fine line between stubborn and stupid and exhaustion causes me to sprint across it. Plus for me there's fear -- I have so much to do for the day job that I need to finish today, and I just can't this morning, which means I'm failing and they're going to fire me and and and (Yeah. Because I can't think objectively I get paranoid.)

So I'm taking myself to bed and telling myself this will end (though if it's a sinus infection probably not until next week.) Your nightmare will end too, and you'll feel more fully Jay.

::massive hugs::
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Scott: Whitley Streiber says hello!
User: scott_lynch
Date: 2010-03-29 17:52 (UTC)
Subject: (no subject)
Keyword:Whitley Streiber says hello!
Yeesh. Sounds like you're boldly exploring previously unknown frontiers of suck. Hang in there, man.
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cathshaffer
User: cathshaffer
Date: 2010-03-29 18:25 (UTC)
Subject: (no subject)
Hang in there. I wish I could Fedex you a bit of my energy. I wouldn't mind taking a nap on your behalf.

How much short term disability do you have? Might want to keep that in your back pocket if it gets any worse. :-(
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Jay Lake
User: jaylake
Date: 2010-03-29 21:51 (UTC)
Subject: (no subject)
I have access to STD. (Hmm, about that acronym...) Have to use all my vacation first, and go on 60% salary. So it's fairly punitive, though *much* better than nothing, should I need it.
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cathshaffer
User: cathshaffer
Date: 2010-03-29 22:23 (UTC)
Subject: (no subject)
Ugh. Your employers are not very generous. That's a pretty stingy STD plan. :-(
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martianmooncrab
User: martianmooncrab
Date: 2010-03-29 19:50 (UTC)
Subject: (no subject)
wishing I could take another day off

what is your company's stand on FMLA?
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Jay Lake
User: jaylake
Date: 2010-03-29 21:53 (UTC)
Subject: (no subject)
FMLA support is good, problem is I have to use up my sick and vacation first, and I need the time later in the year for stuff.
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Keikaimalu
User: keikaimalu
Date: 2010-03-29 20:50 (UTC)
Subject: (no subject)
I'm so sorry, Jay. I've never had chemo brain or chemo fatigue, but I've had other kinds of fatigue, and the enervation is excruciating. It sucks sitting around thinking, "Why can't I think straight, and how come, if I can't think straight, I can still *tell* that I can't think straight, and that I don't feel like me? Where's the me to know that I don't feel like me?"

My best advice for fatigue management is to get yourself set up to waste an enormous amount of time, with movies, easy food, forewarned caregivers, etc. (I spent some surgery recovery time watching every old black-and-white screwball comedy I could find.)

Also realize that fatigue causes an insidious kind of depression that feels different from kinds you may have experienced before. So some of what you're feeling as fatigue might be depression.

The good news is that this is all temporary. All of it. It's situational. I know when you're drowning in that rat-hole, it feels permanent, but it's not.

Are you working with a naturopath, or someone else who might be able to provide some energy-boosting supplements? To be honest, that stuff never did jack shit for me, but different people have different results.

The sun will rise again for you.
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Jay Lake
User: jaylake
Date: 2010-03-29 21:55 (UTC)
Subject: (no subject)
My onc team is pretty iffy on the naturopathic stuff. Some of it actually boosts the cancer's resistance to chemo.
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