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[cancer] Field notes from Cancerland - Lakeshore
An author of no particular popularity

Jay Lake
Date: 2012-12-07 05:39
Subject: [cancer] Field notes from Cancerland
Security: Public
Tags:cancer, health, personal, weird
Therapists' waiting rooms

My therapist, like many, is in a shared set of suites with a single entrance and a little set of buttons the patient presses to indicate that one has arrived. There's an interesting etiquette to therapists' waiting rooms. In my experience, the patient (i.e., me) generally politely ignores all the other poor souls there desperately needing help and pretends that I'm just fine, thank you, only passing through. Making eye contact is somewhere between creepy and verboten, and God forbid there should be casual conversation. After all, you never know what those other weirdoes are in there for.

Except I am the other weirdo. Especially these days with my rather lax dress code, patchy facial and scalp hair, visually unappealing skin condition, and obvious air of exhaustion and dilapidation. My usual verve, my strength of personality, is long gone in the haze of chemo side effects. I mostly shuffle through life now, when I move around at all, like a post-modern zombie strung out on Lorazepam and existential angst.

So when I do cross paths with other patients, I smile politely if need be, and pay attention to my book or digital device of choice. It's just easier that way, and I don't accidentally creep anybody out. I'm not sure I've ever seen another male patient in the waiting room at my therapist's suite, which adds another potential gender- and privilege-based dimension of accidental conflict of which I need to be firmly conscious.

Yesterday I went to therapy, not on my usual day because of a work meeting the day before. I was sitting there minding my own business alone when a woman and her teen aged daughter came in. I tracked them briefly in my peripheral vision, then resumed my Sudoko game. They began talking. (This is a bit unusual in that setting.) It was a private but not particularly personal conversation where the mother was doing a wee bit of parenting and day planning, and surely none of my business, but there I was fifteen feet away and without my earplugs.

For a weird, long moment, I felt a strong sense of identification with these two total strangers. [info]the_child sees a therapist, to deal with the intersection of my illness/mortality issues and her own burgeoning adolescence. I've been the parent in the waiting room with my daughter. That sense of identification was wildly inappropriate, and I kept both my eyes and my words to myself, but I really did want to speak up, to say something encouraging about whatever had brought them there.

Of course, I had absolutely no way to do such a thing. Nor should I have sought one. A therapist's waiting room is an odd intersection of private and public space, a declaration that no, we're not quite all fine here, but we're taking care of business. I mean, that's what I'm doing there.

So I expressed my good will by politely ignoring the both of them. I couldn't even tell you what either of them looked like. But it was a strange moment for me. Not sure what that means.

Sitting around with my digestive tract

In seeing my therapist, we talked as we often do about my chemotherapy side effects. One of the odd things about this round is that I have a lot of trouble sitting up in an ordinary chair. There's a persistent discomfort in my gut that is only eased when I am standing up, or stretched out nearly horizontally. The longer I sit up, the more uncomfortable I get. It never really becomes painful, but the sensation is awfully annoying.

I don't remember this particular problem from either of my prior rounds of chemotherapy. I had to lie down or stretch out a lot to manage fatigue, but I could still sit at my desk or at a dining chair or in an automobile. Now by preference I will flatten any chair I possibly can, and when I do ride in cars — say, to my therapist's office — I recline the seat as much as possible. I spend parts of my workday flat in my recliner with my laptop on my lap, which is actually a remarkably inefficient way to conduct work. I sit up for meetings, shared work sessions, or when I need to do intense work with our various internal applications on the big multi-monitor rig on my desk.

But sitting up is uncomfortable to the point of distracting.

Lisa Costello used her mad librarian skillz to do some more reading on Vectibix, the core drug in my chemo cocktail, and confirmed that yes, pretty much every form of GI discomfort known to man is a potential side effect of the drug. (Including, according to one report I read, fatal diarrhea. Good God, what a way to go.) So this low-grade bloating and persistent discomfort is just life in the big city, I guess.

Think about this: I haven't been able to sit up comfortably in a chair for two months. I likely won't be able to until next May or June. Consider how that impacts one's daily life. Especially when standing isn't really an option either. Add that to a continual state of very low-grade nausea (characterized by episodic retching day in and day out for no particular good reason), and, well, it's a party all the time in my world.

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a_cubed
User: a_cubed
Date: 2012-12-07 13:53 (UTC)
Subject: (no subject)
I do a lot of work on online privacy and data protection. Would you mind if I take a copy of the relevant part of this post for my research notes? It may be passed anonymously to collaborators and a paraphrase may turn up in a paper at some point. It's a useful anecdote about how one person sees privacy in a semi-private space.
On the issue of it being an intersection of private and public space, I defined (in regards to CCTV regulation) public space (roads, parks) semi-public spaces (shopping malls - someone has the right to keep you out but unless specifically excluded you're able to assume you can enter) semi-private space (a school, a university classroom, the interior office [not where customers generally enter]) and private (a home, a doctor's consulting room). Not a perfect categorisation, but complicated enough to be useful while simple enough to use.
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Jay Lake
User: jaylake
Date: 2012-12-07 14:08 (UTC)
Subject: (no subject)
Absolutely. I hope this is helpful. And good luck on your research.
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a_cubed
User: a_cubed
Date: 2012-12-07 14:11 (UTC)
Subject: (no subject)
Thanks.
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threeoutside
User: threeoutside
Date: 2012-12-07 15:19 (UTC)
Subject: (no subject)
*Hugs*, dood.
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Elizabeth Coleman
User: criada
Date: 2012-12-07 14:36 (UTC)
Subject: (no subject)
I don't think there's anything weird or inappropriate about feeling an identification with the mom. After all, you are also the parent of a teenage girl. Inappropriate would be, following them home or something. I also don't think a few words of encouragement would be out of order.

One of the stereotypical aspects of being a Pacific Northwesterner is an occasionally ridiculous need to mind one's own business. I certainly tend that way. But I also think that this can itself be unhealthy. I try not to feel resentful at the random person who comments to me on the nice day, or gee, isn't it annoying that the bus is always late. It's not like they're trying to engage me in an in-depth conversation, and even then, there have been times when it's clear that some person desperately needs to share their pain, and that I'm a jerk if I don't listen. (Actually, one of those times I talked about you, with an old guy who was going to have surgery on his leg, and was absolutely terrified.)

Anyway, my point is, I think it's healthy to maintain some little connections with strangers, because after all, those strangers are fellow travelers in life, and we all have a lot in common. I daresay the therapist's office is one of the places we need to remember that best, that we're all weirdos looking for a hand along a bumpy road. I'd say a smile and a nod could even be a useful thing.
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mcjulie
User: mcjulie
Date: 2012-12-07 14:54 (UTC)
Subject: (no subject)
What Criada said.

Also, maybe you already know this won't work, but have you looked into some kind of kneeling desk arrangement?
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Jay Lake
User: jaylake
Date: 2012-12-07 14:58 (UTC)
Subject: (no subject)
Kneeling? With my knees?

:: hysterical laughter ::

No way. I'd be adding orthopedists and physical therapists to my weekly rounds.
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mcjulie
User: mcjulie
Date: 2012-12-07 16:33 (UTC)
Subject: (no subject)
Well, I knew it was a long shot...

You know, our society really needs more suspending-the-body-while-working options. Maybe we can get the BDSM community on that.
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kellymccullough
User: kellymccullough
Date: 2012-12-08 20:08 (UTC)
Subject: (no subject)
Tobias Buckell picked up a laptop desk designed to be used while lying flat on your back and, if I'm remembering correctly, found it very helpful. I think he talked about on SFNovelists. I can try to find the info if you're interested or shoot him an email.
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Jay Lake
User: jaylake
Date: 2012-12-09 02:19 (UTC)
Subject: (no subject)
Oh, good suggestion. Thank you.
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kellymccullough
User: kellymccullough
Date: 2012-12-09 16:57 (UTC)
Subject: (no subject)
You're welcome, I hope it turns out to help. I haven't heard back from Toby on the thread I started for it yet, but I think this is the one that he initially pointed at: http://www.amazon.com/Laptop-Laidback-Ergonomic-Table-LAPTOPLAPTOP/dp/B001F6K8HS. Though this one looks interesting as well: http://www.amazon.com/iCraze-Laidback-Computer-Portable-Multifuctional/dp/B007AHTPS4/ref=pd_sim_sbs_hg_4 Sorry about the Amazoness of the links, but that's where I remembered them being.

Edited at 2012-12-09 04:58 pm (UTC)
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kellymccullough
User: kellymccullough
Date: 2012-12-09 23:54 (UTC)
Subject: (no subject)
And Toby just verified it was the first one of those with the same link.
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Kate Schaefer: First Icon
User: kate_schaefer
Date: 2012-12-07 16:05 (UTC)
Subject: (no subject)
Keyword:First Icon
Jay, you don't say if you manage to lie down at your therapist's office. I assume (given that it's you) that the classic cliche of the therapist's couch has come to mind, and that (given the furniture of the modern therapist's office) the couch that's actually there is possible but not comfortable for reclining.
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Jay Lake
User: jaylake
Date: 2012-12-07 16:11 (UTC)
Subject: (no subject)
Oh, yes, I am way floppy on the couch. Big time. It's very stereotypical, like a Woody Allen movie set.
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mmegaera
User: mmegaera
Date: 2012-12-08 00:37 (UTC)
Subject: (no subject)
What a wonderful visual. I don't care whether you're disreputable-looking or not. It's still a wonderful visual.
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User: keglinfool
Date: 2012-12-07 17:10 (UTC)
Subject: (no subject)
"I mostly shuffle through life now, when I move around at all, like a post-modern zombie strung out on Lorazepam and existential angst."

This isn't in the flow of the discussion but I thought it worth mentioning. You may be in a chemo induced haze and suffereing from severely impaired writer brain, but that's brilliant. Somebody noticed. Just sayin'.
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Jay Lake: jay-cranky_old_man
User: jaylake
Date: 2012-12-07 17:30 (UTC)
Subject: (no subject)
Keyword:jay-cranky_old_man
Thenk yew.

:: brains ::
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russ
User: goulo
Date: 2012-12-08 08:58 (UTC)
Subject: (no subject)
And more generally, I always enjoy reading the Jayness which comes through clearly in these posts; even the bleakest posts also include your distinct wit and linguistic playfulness, not to mention the psychological and sociological insights. Cancer may be stealing stuff from you, but it certainly has not stolen your blogging talent and your ability to describe all kinds of scenes and situations in interesting thought-provoking ways.
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Jay Lake: jay-electrode
User: jaylake
Date: 2012-12-07 22:33 (UTC)
Subject: (no subject)
Keyword:jay-electrode
You got me. This may be a Jay-thing.

I mean, I'm a fairly large guy (tallish and heavy) and don't look my most reputable these days, to put it mildly. I (a veteran of thirty years of therapy off and on) am also very conscious of the potential fragility of anyone in a therapist's waiting room, myself included some weeks depending on how the whole cancer thing is going. So, the equation of somewhat hulking, slightly creepy seeming guy + emotionally vulnerable women makes me very cautious.

Or maybe I'm reading too much into it. :)
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Joshua Berlow
User: Joshua Berlow
Date: 2012-12-18 14:15 (UTC)
Subject: Waiting Room
I've been following your cancer posts, and finally can chime in on something. I was seeing a therapist. I would always chat with the other patients and try to get them to talk with one another in the waiting room. One day my therapist says to me, first thing, "No talking to other patients in the waiting room". I thought he was kidding. But he wasn't. He was serious and he was an arrogant ass. He then rearranged the chairs in the waiting room to make it harder for the patients to talk to one another.

I got another therapist. But this second guy, although he had a nice exterior, was even more dangerous than the first guy. At least the first guy was an obvious arrogant ass, something that has been confirmed subsequently from finding (via the internet) other patients of his that had the same opinion of him. The second guy was either grossly incompetent or downright evil- I'm not sure which. But in contrast to the first guy, he SEEMED really nice.

People have great respect for doctors and generally do whatever they are told without discussion. Doctors don't have the time or inclination to discuss things much with their patients. I don't recall you talking much about your doctor. It's all about you. I'd like to see a long post about your doctor- where he went to school, what you think of him, etc. Same goes for nurses. I always try to find out everything I can about them. I want to know who I am dealing with.

If you do or have written something like that, let me know as I might miss it.

I have no problem talking with women. If they don't want to talk, they can just let me know and I will shut up. Sometimes they would like to talk to someone. And unlike a therapist, you can talk to me for free.

Oops, almost forgot. Buy my book "Insanity Factory" available in Kindle. It's field notes from Crazy Land!

Edited at 2012-12-18 02:24 pm (UTC)
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