Ancient Layered Hills on Mars — APOD takes us by the shores of a dead, red sea...
A hex on Saturn (again)! — Bad Astronomy with some more on the hexagonal structure at Saturn's north pole.
A universe optimized for starships?
Bacteria Pick Prime Human Body Parts — Learning how our personal microbial communities live could help solve skin disorders. Huh.
Nazi angel of death Josef Mengele 'created twin town in Brazil' — Huh... (Or not, if you follow up some related links.)
?otD: How weird is your science?
12/10/2009 Body movement: 30 minute stationary bike ride (long walk planned later) Hours slept: 9.5 This morning's weigh-in: 229.0 Currently reading: Finch by Jeff VanderMeer
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Your Wednesday moment of zen.
Ruined adobe house in northern New Mexico. © 2006, 2009 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.
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The Clockwork Jungle Book is out!
Shimmer author spotlight on me — Including a podcast of me reading my story from Clockwork Jungle Book, "Shedding Skin: Or How the World Came to Be".
Jay Lake's Get Well Audio Fiction — A full cast reading of two of my stories at Orycon by Jeff Soesbe, M. K. Hobbson, Dave Goldman, David D. Levine, Camille Alexa, and Mary Robinette Kowal. Thank you so much, guys.
![[info]](http://l-stat.livejournal.com/img/userinfo.gif) elfs on characters and the monkeysphere — I appear to have an elevated Dunbar number. And more on Dunbar numbers, via writerjeremy on Facebook.
Skxawng! — On created languages. (Thanks to wllyumtx.)
?otD: Where have you guys been, anyway?
12/9/2009 Body movement: 30 minute stationary bike ride (long walk planned later) Hours slept: 8.75 This morning's weigh-in: 230.2 Currently reading: Finch by Jeff VanderMeer
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Spoke today with the scheduler then the surgery nurse regarding the upcoming port implant surgery. We now have a date and plan.
The port is very helpful in following the chemo course, because it is effectively a permanent IV line. They install a catheter in my subclavian artery, with a port just beneath the skin below my collarbone. A special needle allows penetration of the skin and the port membrane for blood draws and IV infusions. I like to think of this as a Harkonnen heart plug, and consider it the next step toward my eventual instantiation as a cyborg.
I will be having the surgery as Day Surgery on Wednesday, 12/16. The usual rules apply — no aspirin or blood thinners effective immediately, NPO after midnight before the surgery, show up clean and dry with no makeup, etc. Exact timing will be unknown until Tuesday 12/15, when they will call me, but I assume from what was said that we'll shoot for the morning.
Surgery should last a couple of hours, followed by time in the recovery room until I'm well enough to be driven home. They'll be cutting into my neck and chest, implanting the port beneath my clavicle (hopefully on the right side), then sewing me back up. I can expect to be back to normal activity within 24 hours, reportedly, though some people do simply walk away from this.
In other news, I was at the physical therapist today for an assessment of the damage to my left rotator cuff arising from the stresses of the thoracic surgery. The physical therapist was very concerned that we not push too much on the healing skin of the incision, so I'm largely staying away from load bearing work in favor of passive manipulations and simple stretches. Looks like I've lost a fair amount of ground, but I'm not back to zero, and we're going to be careful not to aggravate the healing tissues. She'd also like to do "scar massage", which is apparently intended to help flexibility and tone of scars.
Because as you know, one can never have enough surgery...
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As of 0:dark:stupid calendula_witch is on her way back to sunny California. Wish her well on the long drive home.
I'm here at Nuevo Rancho Lake with shelly_rae, further improving on my further improvements. We braved a one mile walk in the 19 degree air this morning, because I couldn't stand not to get out and move.
Dad is coming over shortly to take us out for some errand running, then a physical therapy appointment, then a psychotherapy appointment. Much as happened yesterday, by the time we get home I'll be a puddle of exhaustion. The rest of the week is much lighter, with a couple of low key family events, and that's about it.
Main thing right now is waiting to find out the surgery date for having my port implanted. I figure that's about like getting a Harkonnen heart plug installed, which can only serve to make me even more science fictional.
For now, sprawled on the couch attempting to recover energy for the next part of the day.
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This morning, calendula_witch and I ( went in for surgical followups, including post-operative consult as well as oncology consult. Medical details under the cut. )
So, the net is that I'm having chemo, from January to June. I have a lot of logical fears, and some illogical ones, but the big kahuna of chemo fears is my dread of the mental blunting. The effects of "chemo head" scare me spitless. Add to this my concerns about the long-term effects of peripheral neuropathy, and I have plenty to keep me occupied. I will cope with these fears as I cope with everything, by running toward them and owning them. But that's the view today.
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Ah, the perils of cancerbrain.
Yesterday, calendula_witch and I actually left the house by automobile. I've been walking, but otherwise indoors, since the surgery. Videos needed to be returned, and one re-rented, and I just wanted out. (As it happens, the ride was intensely uncomfortable due to my chest swelling issues, but still worth the effort.)
As we were preparing to leave, I could not find the car keys. I'd swapped cars with Mother of the Child, as her seats are much higher and more vertical than those in either the Genre Car or the Witchmobile, and are built such that I can position myself with less pain and discomfort. the_child had left me with the keys, but they were nowhere to be found. calendula_witch and I tossed the house. I called MotC and the_child, both of whom had gone over to her friend D—'s house for dinner, on both their cell phone and on the landline at D—'s house. No answer on either line (calls 1 and 2), so I called back and left an urgent message on each trying to find out if the_child had moved the car keys (calls 3 and 4).
The car keys were eventually found in my pocket. (Ahem.) I called back both numbers and left messages saying everything was alright, no need to call me back (calls 5 and 6). A few minutes later, D— called me back (call 7). We had one of those conversations one has with children where an otherwise erudite and verbose child suddenly acquires the conversational agility of a soap dish.
D—: "What did you want?"
jaylake: "Nothing now. We figured it out. the_child doesn't need to call me back."
D—: "What...?"
jaylake: "Everything's ok. I don't need to talk to anyone."
D—: "What...?"
jaylake: "Tell the_child that I don't need her to call back."
D—: "What...?"
A few minutes later, the_child called me back (call 8). We reprised the same conversation, right down to the dull-voiced and uncomprehending refrain of "What...?"
A few minutes later, Mother of the Child called me back (call 9). I carefully explained that I was trying to head off further phone calls by telling people everything was alright, that my initial message no longer applied, and they really, really, really didn't need to call me back any more, really, I swear, everything was fine.
At 1:30 this morning, my cell phone rang, waking me out of a sound sleep (call 10). It was D—'s mother. "From the caller ID, it looks like you called. What's up?"
Aaaauuuuuughhh!!!
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| 2009-12-07 05:28 |
| [cancer] Monday update, and miscellaneous other things |
| Public |
| calendula, california, cancer, child, conventions, health, personal, sale, stories, travel, work |
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Big day today. calendula_witch and I are off to the hospital shortly for a chest x-ray, followed by a post-operative consultation with the thoracic surgery team. Insofar as I can tell, my recovery is going quite well, but the fluid build-up in my chest continues to be a significant irritation. Right now my chest hurts anew. Yesterday the fluid there found new channels, including one reaching my sternum. To be discussed. I'm also hoping for a return-to-work authorization for 12/14, or possibly even late this week. I'm getting bored enough to miss that, though I'm not ready for it just yet.
After that we see the oncologist to review the pathology reports and prescribe the chemo. Current expectation is that the port will be installed in my chest about a week before Christmas, and that we'll commence the infusion process in early January. When I have confirmed details, I'll lay this out. Frankly, this terrifies me. More to come on all fronts.
Once we're done there, we'll pop downtown and pick up shelly_rae at the train station. Then we'll be planning my next month or so, and locking down life under chemo. At this point, I assume I'll be cancelling all travel, including convention and workshop appearances, through June, but I'd love to be wrong. The only open question is whether the_child and I can still go to California over Christmas.
calendula_witch heads back to San Francisco tomorrow, barring some extremely unusual developments. (ie, something weird popping up in today's oncology consult.) My life might be normal(ish) by next week, if I'm lucky.
Still not able to read complex material, but things are coming back to me. I am starting to randomly fire off story ideas, which is a good sign. Also very much normal behavior for me. In other news, my short story "Permanent Fatal Errors" has been accepted for the anthology Is Anybody Out There?, a Fermi paradox themed book edited by Nick Gevers and Marty Halpern. This is another piece of the Sunspin continuity, and deals with some critical backstory elements connected to a core McGuffin.
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Your Monday moment of zen.
Me at age 2-1/2, with my grandfather in Ottawa, Canada. © 1966, 2009 Joseph E. Lake
This work by Joseph E. Lake is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
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This morning, calendula_witch and I walked my 60-minute loop. It's about 3.0 miles of suburban walking, along residential streets in the general neighborhood of Nuevo Rancho Lake. Up til this point post-operatively, my longest walk had been about 25 minutes to cover roughly a one mile subsegment of this loop. We made the entire loop in slightly less than 65 minutes in the frosty morning air, though I was staggering by the time we got back to the house, and went down hard for a (mercifully brief) nap.
This is huge for me. To reclaim my fitness, even nominally, is so important. Last year it took me months to get anywhere. With abdominal surgery, the wound healing was so much bigger an issue than the chest wall punctures I am now recovering from, so that's certainly a big factor. However, I also have to credit my extensive and constant walking and biking programs over the past 18 months with readying me for this recovery process.
I owned that hour, in the same way pre-op me owned that hour. (Well, almost so, certainly close enough.) There's still a million things wrong, recovery progresses apace, but damn it, my body can move.
I am terribly pleased.
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By request from garyomaha, a new caption contest! Usual rules apply. I'll collect captions in comments here (at both jlake.com and jaylake.livejournal.com) until I get bored with it, then build a voting poll, once I'm far enough off opiates to stitch that pseudocode together. Please try to limit the length of your entries or they may become truncated in the poll code.
Prize will be two of my books to the winner (depending on availability), plus, as always, bragging rights. Have fun!
The photo in question:
© 2009 M. Lake, all rights reserved.
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Well, let's see. My mental acuity has returned sufficiently for me to track complex conversations over extended time periods, specifically between one medication cycle and the next. Just today I've begun experimenting with extending (slightly) the time between medication intake, which is the first step in weaning myself off the opiates. I'm starting to be pretty seriously bored, also a good sign. My walking range is beginning to extend now, walking a mile in 25 minutes this morning without ever stopping to breathe. And I can play Sudoku again, which has long been a sort of mental marker for my state of stress and ability to focus.
On the down side, I still can't read worth a damn. Even tracking a decently long article on the Web is tough. I continue to have no interest in picking up books. This is only my second attempt at a blog post since leaving the hospital last Sunday, as even that much narrative awareness is only available to me in fits and starts.
Over the next week or three I'll try to document my hospital experience. We're definitely in the anticlimax right now, that trough between surgery and the pathology report. Next Monday morning, calendula_witch and I go in to see the thoracic surgery team, then the oncologist. We'll have the last stitches on the drain port taken out, followed by a discussion of the chemo path. shelly_rae will be in town Monday midday, and the three of us will spend some time sorting through what it all means.
Right now, I don't know. And I won't even have a glimpse until then. All the grief and terror is still out there. It's just waiting for another turn of the wheel, for the business of the moment to come spilling out like blood on sand.
This has been a tough road, in all the obvious ways and in more than a few non obvious ones as well. I don't suppose it will get any easier, though eventually losing the 'busted ribs' sensation from the chest incision will be helpful. Details to come, as I understand or can recall them. For now, suffice to say my hospital experience was good to excellent, the food wasn't bad, and friends and family really came through.
I swear I'm getting back on this horse. One stirrup at a time. There's just a freaky lot of stirrups here.
I'll leave you with a thought. Not so long ago, the single overriding sensory impression of hospitals, at least in my experience, was the smell. Nothing has an odor quite like the damp, disinfected, bandage reek of a hospital. Lately, though, the quality of the cleansers has improved. Or perhaps my nose has been stunned with age. Because now my single overriding sensory impression of hospitals is the beeping. Literally two or three dozen different alarms which beep in the nurses' stations in the halls outside the rooms. Different volumes, keys, pitches, tempii. It's a symphony for one-note sonics, written large across my waking dreams and sleeping thoughts.
That noise will follow me all my life, I suspect. When the time comes, please don't wire my coffin for it, ok?
Meanwhile, I leave you with ( this cheerful image of me eating in the hospital. )
So far I've come...
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Your Friday moment of zen.
A fungus from the Yerba Canyon hike at Taos Ski Valley. © 2006, 2009 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.
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As previously mentioned, kylecassidy and circle23 came by Sunday night, November 29th, shortly after my discharge from the hospital for the thoracic surgery. kylecassidy has an ongoing project of shooting writers in their writing spaces, which had been the original idea even before this round of cancer treatments had been scheduled. Once I knew I'd be sidelined from the surgery, I encouraged them to come anyway, with the notion of documenting some of the physical reality of my cancer experience, both the love and the pain.
calendula_witch and shelly_rae were here at Nuevo Rancho Lake that evening, taking care of me with help from jkoke. the_child was present as well. kylecassidy and circle23 showed up, bustled about with some equipment, then began shooting me as I lay on (and in) my bed, showing my surgery scars and talking about my experiences a bit. I'm pretty sure the Dilaudid did most of the talking, frankly.
The pictures range from striking to heart-rending. Some are difficult to look at, due to the fresh scarring; others show the love in my life with startling clarity. I think they tell the story more than my words do, so ( without further ado - and bear in mind the graphic nature of some of these images: )
Images © 2009 Kyle Cassidy. All rights reserved. Reproduced here with permission.
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I crawl ever further out from under the Dilaudid-induced haze here as the days go by. Still rocking the painkillers pretty hard, with all the attendant emotional and mental weirdness (which will be documented as my head clears even more). Thought I'd start with what I've come to call "the ninja moment" as my initial attempt to talk about being in the hospital.
The first night out of surgery, Wednesday the 25th, I was in ICU. I have little memory of that now, though I expect I can extract some if I work at it, and discuss everything with shelly_rae (who was there overnight), calendula_witch and so forth. After that, they had me in a bed in the cardiac ward, where I remained on epidural medication until Saturday night, the 28th. At that point my drain had been removed, and the epidural shut off, though not extracted, and I'd switched to oral pain management via Dilaudid pills.
I woke up around 11 pm with no idea where I was, or who I was. Classic soap opera amnesia. I noticed someone sleeping on a banquette near the foot of my bed (shelly_rae, of course, but I didn't realize it right then), and I could hear people outside in the hall. Also, a light was on behind a curtain to my right.
I spent several minutes trying to figure out what this could mean. Was I in a hospital? (The epidural tubes were kind of a giveaway.) Why? Who was this person sleeping near me? I decided I was being held prisoner, and that I would have to find a way out of the room, quickly and quietly. I also decided I had to pee something awful.
Very carefully I slipped out of the hospital bed. Mind you, until that night this had been a two-person operation due to the Foley catheter, chest tube, epidural and IV lines. At this point, I only had the epidural, which is (annoyingly) mid-back, so I managed to slither over the bedrail and onto my feet with a minimum of fuss. The epidural stand was clumsy and heavy to move, but I managed to slink into the bathroom — the lit space behind the curtain — without attracting undue attention.
At that point I urinated about 1/2 liter into the little jug thoughtfully provided there. (I couldn't remember who I was or what I was doing there, but apparently I could remember to pee in the jug.) I'm here to tell you that a person evacuating 500 ml of urine makes a lot of noise for a long time, not the least bit stealthy. My mighty ninja powers did not extend to silencing Niagara. shelly_rae woke up at that and quite reasonably asked what I was doing.
The sound of her voice brought me back to myself, and I was left with a steaming jug in one hand while I trying to explain my big plan to escape from durance vile under her watch. She laughed, and steered me back to my bed.
I'd experience several episodes of confusion (or frankly, drug-addlement), but this was the most structured and elaborate. By the time I got back to bed, I was laughing at myself. Weird stuff, that post-operative environment. More to come, when brainspace and mental acuity allow.
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Your Thursday moment of zen.
Jay Lake and Shannon Page, photographed November 29th, 2009 by Kyle Cassidy as part of a series on Jay's cancer experience. © 2009 Kyle Cassidy. All rights reserved, reproduced with permission.
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