[cancer] Side effect bingo
Well, yesterday was a spectacularly bad day in the chemo side effects department. This is not me complaining about it, this is me documenting the cancer experience as fully as I can. (If I did start to complain, I’d probably never shut up again, so we’ll leave that one alone.) I am still amazed at how much the aspects of cancer and its treatment ripple through my life.
As I do, I’m going to discuss some things that aren’t normally discussed in public, so this post is under a cut for medical TMI, specifically detailed discussion of digestive health and lower GI issues.
YOU HAVE BEEN WARNED.
There’s a point in time after I finish chemo when my stomach lining sloughs off. During session one, that happened Thursday/Friday/Saturday, to rather spectacularly unpleasant results [ jlake.com | LiveJournal ].
During session two, this happened yesterday.
Due to the experiences of the previous session, I started tracking my bowel movements in a spreadsheet entitled “The Poop Sheet”. Because, well, that’s what I do. (Once a consultant, always a consultant, I guess.) It’s a way to validate the trends and report my outcomes to my medical team. Yesterday, I experienced fifteen bowel movements and passed approximately 148″ of firm stool. This from a man with less than 30″ of colon remaining, who is eating lightly. (And there was more after midnight, that’s just tracking by calendar day.) It was deeply extreme, even by the admittedly loose standards of my post-operative colon.
I spent about three of my waking hours sitting on the toilet. That’s incredibly disruptive, in a most basic way. (Even so, I got a workday done and about 90 minutes of writing time.) More to the point, I did not get nearly enough sleep last night. I was awakened four times with the need to go — my sleep metabolism, which normally suppresses even my overactive bowel function, couldn’t keep up.
Further complicating matters, a structural issue which has been present in my colon since the surgery inflects the situation. I have a bend or pocket or something in my repositioned colon such that when I lie down in my sleeping position after evacuating my bowels, I sometimes have to get right back up and return to the toilet — that particular pose unkinks or releases additional gas and stool. Last night, I could not go back to sleep, because every time I got up to the toilet, on returning to bed, the sense of pressure and need would immediately return, keeping me wide awake until I got up and tried again.
Chemo fatigue means I need more sleep than usual. I did not sleep well in general, with one stretch of ninety minutes of wakefulness. I am beginning the day exhausted, which is dangerous for me. I could not get up and walk this morning, which means I don’t have the energy lift from that. I’m quite worried in a general sense that if I let my exercise slip I won’t get it back. (My plan is to spend 30 minutes on the bike later today, but sheer fatigue may keep me from even that.)
So today I’m dealing with the aftermath of massive digestive failure, with the resultant sleep failure, which in turn generated exercise failure. And due to the requirements of chemotherapy, I can’t even take a sick day from work without financial impact, as I’ve already overscheduled my paid time off for the year.
Even the little things can make me crazy. Maybe especially so.
Tags: Cancer, health, Personal, work
Posted: 5:50 am Wed January 27 2010 | Comments(1) |
[photos] Your Wednesday moment of zen
Your Wednesday moment of zen.
Abandoned auto service station, Great Falls, MT. © 2006, 2010 Joseph E. Lake, Jr.
This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
Tags: Montana, Photos, zen
Posted: 5:23 am Wed January 27 2010 | Comments(0) |
[links] Link salad stumbles into town, just like a sacred cow
Smash his camera, but not immediately — Roge Ebert on Ron Galella.
End of the Road for Mars Rover — After six years, Spirit has gone sessile. Not bad for a machine with a nominal 90-day design life.
Auto-appendectomy in the Antarctic: case report — In case you were wondering how it’s done. (Via Making Light.)
Your Family Needs Protection Against Syphilis — A visually striking WPA era public health poster, but there’s also something quirky about the subheadline on the poster itself.
HCR, one conservative and me [ jlake.com | LiveJournal ] — A blog post of my own from yesterday, which I link to here to point back to the very active comment thread on the LJ side, specfically the Constitutional discussion. (Some good stuff on the WordPress side, too.) Also, this whole story reinforces the simplistic notion I’ve long held that conservatism is fundamentally a failure of empathy.
Shocking discovery: Kids who fear sex are open to anti-sex messages — A look inside the rather creepy tactics of the forced pregnancy movement.
?otD: Is sleep for wimps? Show your work.
1/27/2009
Body movement: n/a (underslept)
Hours slept: 6.5
This morning’s weigh-in: 227.2
Currently reading:
Bangkok 8 by John Burdett
Tags: Art, Cool, health, healthcare, Links, Personal, Politics, Religion, Science, Tech
Posted: 5:19 am Wed January 27 2010 | Comments(0) |
[writing] Our Lady of the Islands
Just put a wrap on the second draft of my collaborative novel with , Our Lady of the Islands. We predicted 120,000 words, and this draft is 120,100 words. We bad! And here’s me, revising through surgery and chemo.
Onward to rewriting Endurance, which Tor is expecting from me soon. Luckily, there is a complete first draft.
Tags: Books, Calendula, Endurance, Our Lady, Writing
Posted: 4:51 pm Tue January 26 2010 | Comments(1) |
[cancer] HCR, one conservative and me
Had a very revealing chat with a conservative friend today. We’ve known each other for over ten years. He’s a very nice guy, classic Midwestern conservative in his politics, about which we occasionally trade friendly jabs.
On the back of another call he asked how chemo was going. We talked about that, and I mentioned the problems with the HCR bill, commented that the possibility of not overturning lifetime coverage and pre-existing condition limits were alarming to me.
He complained that there was nothing in the Constitution about a right to healthcare, and he was sick of liberals redistributing wealth. The metaphor he used for publicly-financed healthcare was sick people walking down the street asking everybody to pay $20 for their treatment, and why should he have to do that?
I pointed out that one of the purposes of government is to maintain the commons, that he never gets back the portion of his taxes that go to bridges or fire prevention, either. In a society as wealthy as ours, in my opinion, healthcare should be a right. We can afford it.
He said, fine, don’t take it out of my pocket. I told him that by the time I’m done with chemo, my treatments will have cost the insurance carrier about $350,000 over the past 26 months, and me about $15,000 in both out of pocket and indirect costs. That if I’d had to bear the $350,000 myself, I’d be dead now. And how is a profit-based insurance system ever going to be incentivized to pay that kind of money for me, except by Federal mandate?
He told me it was the principle of thing, that he just didn’t want to see wealth redistributed so freely. I told him I wasn’t willing to die for that principle of his, and if he got sick like I am, he wouldn’t be either. And that this could happen to anyone, it wasn’t ideological or behavioral, it was life. He reluctantly acknowledged I had a point.
I don’t think for a moment I changed his position on this. But that is what calls a “pain story,” and maybe I helped him see my perspective a little better with my pain story.
The thing that baffles me about so many of my conservative friends is that they hold high-minded beliefs with horrid, even deadly consequences. They tend to be so deeply unwilling to acknowledge the consequences of their own beliefs. This once, I got a conservative friend to acknowledge for a moment the true human cost, to someone he cares about, of one of those high-minded beliefs.
I won’t call it a win, but I will call it progress.
Tags: Cancer, health, healthcare, Personal
Posted: 3:42 pm Tue January 26 2010 | Comments(9) |
[cancer] Chemo and its discontents
I hate the way cancer bends people around me. The last two days have been very difficult in my family, for reasons which are obvious, and which I will not elaborate on for the sake of the privacy of others. Things seem to be better today, but that remains to be proven.
I’ve said before that cancer is a social disease. It affects everyone in my circle, from my nearest and dearest to distant friends, and even strangers moved to write to me about the experiences in their lives and families. I receive heart-warming emails, I receive heart-rending emails. Some are both.
But when the stress and fear and rage strike at home, while I’m still flattened by chemo and crawling back out of the drug pit it pushes me into, that redoubles the impact for me. I am surrounded by love, and I love more than freely in return, but sometimes the tide of cancer can even roll over those long, firm seawalls and flood the swamps of my despair.
We go on, because there is nothing else to do. We go on, because that is how we triumph. I go on because I must, because I love, because I cannot and will not do anything else. But some days are damned, damned hard.
Tags: Cancer, family, health, Personal
Posted: 5:48 am Tue January 26 2010 | Comments(0) |
[photos] Your Tuesday moment of zen
Your Tuesday moment of zen.
Sign, Great Falls, MT. © 2006, 2010 Joseph E. Lake, Jr.
This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
Tags: Montana, Photos, zen
Posted: 5:39 am Tue January 26 2010 | Comments(0) |
[links] Link salad has tire tracks all across its back
SF Signal with a review of Other Earths — Edited by Nick Gevers and myself.
Philip K. Dick: A ‘plastic’ paradox — The Berkeley boho spent his final years in Orange County, which suited him fine, his daughter says.
James Patterson Inc. — About one author’s journey to the top of publishing. (Thanks to my Dad.)
The art of cutting leaves — Wow. (Thanks to .)
Analysis of 32 million breached passwords — (Thanks to , a/k/a my sister.)
One year with Obama — is wise. Perhaps sadly so.
Why do so many of our political leaders support creationism? — Outside of a framework of faith, Creationism is arrant nonsense that has no place in decision making in a modern society. You don’t get to choose your own facts based on faith. Yet the idiocy that is Creationism seems inescapable in our political framework, poisoning the well of thought, debate, education and law. I really like this take on where it comes from as a top-down political trend.
?otD: Are you experienced?
1/26/2009
Body movement: 60 minute suburban walk
Hours slept: 7.5
This morning’s weigh-in: 224.4
Currently reading:
Bangkok 8 by John Burdett
Tags: Art, Books, Cool, Links, Personal, Politics, Publishing, Religion, reviews, Tech
Posted: 5:36 am Tue January 26 2010 | Comments(2) |
[help] UPDATED: Call for Portland peeps on 1/30
I am looking to move some furniture between two rooms of my house, definitely on Saturday, January 30th. Due to chemotherapy, I’ll be pretty useless for this except as a traffic director, and the effort involves both some heavy lifting and some cleverness as most of my tech gear will be relocating in the process. Will take some hours, I expect, all told.
Anybody in for beer and pizza and maybe some free books? (Other foods as well for those not on a beer-and-pizza diet.) Let me know in comments, and I’ll track by email as the week goes on.
Current plan is for a “first shift” around 10 am to break down files, move small stuff, etc., and generally clear the way. “Second shift” around noon to deal with large, bulky furniture type issues. And we have one item, a sofa, that need to be moved across town if someone has a van or truck.
I’ve got some RSVPs already, but feel free to renew/remind me, even if you’ve already replied.
Thank you.
Tags: Help, Personal, Portland
Posted: 5:57 am Mon January 25 2010 | Comments(9) |
[cancer] Chemotherapy, day three of session two
Yesterday, not to put too fine a point on it, sucked. I was exhausted by the chemo, more so than the previous session. We think this may have to do with me skipping the Lorazepam this time, and thus sleeping less overall. Also, the general increase in side effect intensity over time will surely play in. I did have the peripheral neuropathy act up both yesterday and this morning. Mostly, though, yesterday’s issues were emotional. had a strong bout of cancer stress which was overwhelming. Some less dramatic but still draining life stuff was also in play. The bottle ritual [ jlake.com | LiveJournal ] was tougher this time, too. By the time evening rolled around, I was deep into spoon deficits both emotionally and physically.
flies home this morning. I won’t see her for over two weeks, our longest skip in months. This is for various good reasons which have been fully discussed, but still I’ll miss her. trains home Wednesday. I shall miss her. Then I’ll be on my own. Since we’ve pretty clearly established I shouldn’t be left alone the first few days after chemo, this is all good, but I guess I’ll get to be a solo-flying grownup later this week.
A photo or four…
Us, after taking out the pump.
Me, during the bottle ritual.
Me, after the bottle ritual.
Two down, ten to go.
Photos © 2010 .
This work by Shelly Rae Clift is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
Tags: Calendula, Cancer, Child, health, Personal, shellyrae
Posted: 5:50 am Mon January 25 2010 | Comments(2) |
« Older Posts | Newer Posts »