You are viewing jaylake

Lakeshore - [cancer] Memory
An author of no particular popularity

Jay Lake
Date: 2013-01-20 05:45
Subject: [cancer] Memory
Security: Public
Tags:cancer, family, friends, health, personal
One of the more pernicious effects of long-term chemotherapy (30 sessions over the past 37 months) is memory loss.

I don't notice it much in my day-to-day life. My memory for general knowledge, my vocabulary, and so forth are close to the same as ever, when I'm not laboring under the direct influence of the chemo drugs. But my memory for people and events...? Not so much. That set of issues doesn't come up very often, especially when I'm living as a chemically-induced introvert, but as I was so rudely reminded yesterday, it is real.

A small example of this is that I used to say to people at Cons, "Unless we've had dinner or had sex, I may not remember meeting you." Then last year at Confusion, I turned to Brent Weeks, who lives here in the Portland area, and whom I have spent time with, and said, "Have we met?" Which was enormously embarrassing, though he was quite gracious about it.

Yesterday, I ran into a substantial example. At a family gathering, my (step)mother mentioned that I had bought her an electric can opener one time when she had broken her wrist and I was helping her take care of my parents' beach house. Not only did I not remember buying her a can opener, I could not even remember her ever having broken her wrist, or me spending time helping her.

Which suddenly made my head a pretty damned frightening place.

The problem is, I don't realize I don't remember stuff. Those missing memories of people and events don't leave an obvious gap inside my own head. It's not like a missing tooth, or being unable to recall a word. (Though it did take me two weeks recently to remember Caitlin Kittredge's name, which was kind of obvious, as I was discussing her with Lisa Costello.) My self-awareness is missing important flaws in my own cognitive processes. That is frightening.

I am rather afraid this is a permanent effect. Another damned thing cancer has stolen from me. At least it's not inserting hallucinations or false memories — I can trust the things I do remember, at least those events which occurred when I wasn't drugged out of my mind by chemo. But to not know the life events of the people you love? To not remember the people you know?

What does that make me?

I can't really answer that question, except to say it decidedly makes me not myself. As time goes by, I am become cancer, more and more.

And I hate this.

Post A Comment | 20 Comments | Share | Link



mevennen
User: mevennen
Date: 2013-01-20 14:01 (UTC)
Subject: (no subject)
I hate to say this but it might 'just' be age. I forgot my cousin's name recently for about a day.
Reply | Thread | Link



Jay Lake
User: jaylake
Date: 2013-01-20 14:36 (UTC)
Subject: (no subject)
I rather think spacing Caitlin's name was in fact middle-aged memory happening, but forgetting that my mom had broken her wrist? That seems like a big deal. Sigh.
Reply | Parent | Thread | Link



Autopope
User: autopope
Date: 2013-01-20 15:10 (UTC)
Subject: (no subject)
A small part of it is age, but medical treatments can really screw your memory. Chemo is one of them, but there are others.

I spent about 3 years on simvastatin -- a front-line, cheap statin -- which has a common, but not officially acknowledged side-effect of damaging your short term memory. I basically got the cinematic trailer for Alzheimer's. Everything from finding myself in the kitchen or bathroom several times a day with no idea what I was doing there, to mangling my travel itinerary (last time I visited Portland -- remember me driving? It was because I kept forgetting to book train seats until it was too late!). It came to a head last year and I'm on a different statin now, and I'm a lot better, but my memory of the past 5 years is a bit like swiss cheese, and it really sucks.

(This is not aided by going to a lot of SF conventions where people who haven't met you nevertheless have an emotional relationship with your work and therefore approach you with body language that says "hello, friend!", thus forcing you to guess whether they're a stranger or someone you actually ought to recognize.)

But yes. Memory loss sucks. Sometimes I found myself wondering who the hell I was, whether what made me "me" was trickling away. But those moments passed quickly -- I forget about it, usually. Still scared, though. If I'm ever diagnosed with a dementia I think I'll be looking up the Dignitas clinic's email address in a hurry.
Reply | Parent | Thread | Link



fledgist
User: fledgist
Date: 2013-01-20 17:16 (UTC)
Subject: (no subject)
Now, about that 5 million nicker you borrowed from me. I'm in no hurry...

My best beloved thinks that my own memory problems are caused by one of the medicines I've been taking since my major surgery two years ago. I had no idea that the problem was so common. I'd thought it was just me.
Reply | Parent | Thread | Link



a_cubed
User: a_cubed
Date: 2013-01-22 00:55 (UTC)
Subject: (no subject)
Also beware of nutrasweet if you drink lots of diet drinks (and in the UK even many nondiet drinks contain the horrible stuff these days). Anecdote not evidence but I know of at least two people whose memory significantly improved after dropping the diet drinks from their diet. One of them later said I'd "saved their life" with the advice. Not really non-sicence. Someone (who's possibly reading this) told me about early results they were getting on aspartame in lab rats (primarily short term memory issues. The research was canned as soon as FDA approval for food use came through.
Reply | Parent | Thread | Link



Jay Lake
User: jaylake
Date: 2013-01-22 02:38 (UTC)
Subject: (no subject)
I gave up artificial sweeteners many years ago due to them inducing headaches in me. I gave High Fructose Corn syrup about five years ago due to me being fat. I've been happy with both decisions.
Reply | Parent | Thread | Link



a_cubed
User: a_cubed
Date: 2013-01-22 15:18 (UTC)
Subject: (no subject)
Due to one of those ill-wind things it was impossible to get the sugared (not HFCS nor containing nutrasweet) soda I was drinking in Japan just after the earthquake/tsunami (disrupted supply lines, and the destruction of factories in Tohoku supplying bottles, possibly - that was the cause of the lack of milk, anyway, the main tetrapak factory was destroyed). I switched first to tap water with lemon/lime/yuzu/sodachi juice then to sparkling water with that. THese now form a large part of my liquid intake along with unsweetened tea (green and black, hot and cold). I reckon it reduced my calorie intake by 300 per day and really helped me get down to below 75 kilos (I was 100 before I started dieting and exercising seriously in 2009).
Reply | Parent | Thread | Link



threeoutside
User: threeoutside
Date: 2013-01-20 16:04 (UTC)
Subject: (no subject)
Regardless of the reason you lose those memories, here's a thought. Our "selves" (and this is my lay person idea, so don't blame it on any particular school of psychology) are formed by our experiences. I don't remember ALL of the experiences I've had - one couldn't, you'd be insane. But I am shaped even by the ones I don't remember, and the ones I don't know that I don't remember. The Me sitting here writing this, was shaped by all the experiences in my life. So I don't feel that forgetting some of them, for whatever reason, makes me less Me.

Like I said, just a thought.
Reply | Thread | Link



scarlettina: All my own stunts
User: scarlettina
Date: 2013-01-20 16:31 (UTC)
Subject: (no subject)
Keyword:All my own stunts
I completely agree with threeoutside. You've probably heard me say that there are whole groups of months that are just gone from my memory around my father's death, my mother's death. Those holes in my memory, certainly, are my head's way of helping me deal with those traumas, but I am no less who I am because of them. You're not trickling away because you can't remember things; you are and always will be Jay Lake, and the influence of those events remains, even if their details don't.
Reply | Parent | Thread | Link



alumiere
User: alumiere
Date: 2013-01-20 23:43 (UTC)
Subject: (no subject)
As someone who is actively struggling with memory loss this feels right. But I live with the knowledge that I may lose that underlying who I am if the losses get bad enough, and that's terrifying.
Reply | Parent | Thread | Link



threeoutside
User: threeoutside
Date: 2013-01-20 23:50 (UTC)
Subject: (no subject)
Yes, intuitively, it feels probable that there is some thresh-hold of memory past which one has lost part of one's self and that is frightening to anyone.
Reply | Parent | Thread | Link



Keikaimalu
User: keikaimalu
Date: 2013-01-20 16:09 (UTC)
Subject: (no subject)
I hear you. I've asked the same questions.
Reply | Thread | Link



Gary Emenitove
User: garyomaha
Date: 2013-01-20 18:02 (UTC)
Subject: (no subject)
Your forgetfulness sounds like one of my typical day to day conversations. I agree with what others here have to say about it. As an introvert, perhaps forgetting someone's name or having met someone doesn't annoy me as much as it might bother The People's Jay. Remembering everyone I've had dinner with? Or had sex with, ever? Really?? I can't begin to fathom that.

I am impressed with the standard you set for your memory, but it seems unrealistic given how many JayCons have celebrated your 37th birthday.
Reply | Thread | Link



shelly_rae
User: shelly_rae
Date: 2013-01-20 18:45 (UTC)
Subject: (no subject)
The memory loss is one of my biggest frustrations. I've gotten more comfortable with explaining to people that I won't remember them unless they remind me of why I should know them--3 pieces of context usually help me find the connection. But it's not who I AM. My image of myself is someone who connects people, who introduces them, I'm a party facilitator, a casual matchmaker, so this memory loss really hits at the core of my identity. When I can't remember or recognize people I really should know, well, it shakes me to my soul. A few weeks ago I was to meet EB for a movie. I KNEW she was coming. She texted that she was on her way. But when she waved at my from the escalator, I didn't recognize her and thought she was waving at someone else. It wasn't until she said my name that it fell into place.
This just sucks.

People tell me that it happens to them all the time, that it is age--this doesn't help--in some ways it makes it worse. I work hard to remember and recall what I have losing more scares me.</p>

I keep notes, take pictures, journal, tag, set alarms, calendars, and try to keep it all together--if my computers are lost or the cloud fails me it's all gone.

I think chemo brain gets better. It takes work, and a little help from friends. Brain injury, brain tumors, aneurysm, and chemo? We shall see.
Good luck Jay.
Anon

Reply | Thread | Link



mmegaera
User: mmegaera
Date: 2013-01-20 19:11 (UTC)
Subject: (no subject)
Putting names to faces is a problem I've had all my life. Along with being so focused that I don't hear people calling my name while I'm walking down the street. I envy people with the kind of memory you have (you still have more than I do when it comes to stuff like that).

Thinking of it as a handicap didn't even occur to me until I took a job as the first degreed reference librarian they'd ever had in a very small town in Montana about twenty years ago, which resulted in a) my picture being on the front page of the local bi-weekly newspaper, and b) total stranger after total stranger coming up to me on the street and welcoming me by name. I didn't blame myself for not knowing them, obviously, but it took me a while to realize that it was only the frequency of such hails that was unusual in my experience.
Reply | Thread | Link



martianmooncrab
User: martianmooncrab
Date: 2013-01-20 20:58 (UTC)
Subject: (no subject)
What does that make me?

Aphasic..

I do know what my brain cant find as it were, and its damn frustrating, missing words, short term memory, and then having to devise meme's or shortcuts or bypasses to keep on functioning. Then what does bubble up, I grab with all my claws to hang on to, because I dont know if it will slip away either. Doesnt help my sense of time is distorted by it either.

I take it as it comes, and go with the rest, the frustration steals more, so I try to avoid that.
Reply | Thread | Link



alumiere
User: alumiere
Date: 2013-01-20 23:39 (UTC)
Subject: (no subject)
This is hard. I struggle with this endlessly, and they can't even tell me why.

I can't pull up a picture of my Grandmothers, Grandfather, or Great Grandparents, all of whom were part of my life until at least college according to my parents. Last time I visited the east coast I didn't recognize many long-time friends. And learning new things - yeah, not a chance. I've been struggling to read a book and retain who it's about from beginning to end and it infuriates me.

I have, however, come to the realization that who I am personality wise seems to be the same. (Thank fuck for lj archives). Still an angry punk turned rivethead even if I can't remember how I got here. So I take each day as I can and try not to fear that the core of who I am is going away with my memories. It makes me angry and sad to lose so much, but I'm not ready to quit trying - I keep telling myself that as long as I can still fall into the music and dance (it's been my center for 30+ years) this person is still me.
Reply | Thread | Link



barbarienne
User: barbarienne
Date: 2013-01-20 23:59 (UTC)
Subject: (no subject)
I have always been like that, sans chemo drugs. People will talk about events and people I met, and I'm like, "What? When was that?"

The stuff I do remember sticks very hard. And I remember facts and information and trivia really well. But most of my life falls out of my head unless something really distinctive happens.

But I'm used to it. I imagine it's rather more frightening to experience it after decades of not having this problem. But now I want to dub you Simon Illyan, after the Bujold character. There are worse characters you could be like. :-)
Reply | Thread | Link



Karen
User: klwilliams
Date: 2013-01-21 00:55 (UTC)
Subject: (no subject)
Yeah, this sucks. It's happening to me, too, because, well, lesions on my brain. It's very scary.
Reply | Thread | Link



Elizabeth Coleman
User: criada
Date: 2013-01-21 15:46 (UTC)
Subject: (no subject)
Another thing to keep in mind, and yes, it may be a small comfort, is that "Jay Lake" extends beyond your own perception of yourself. You've influenced countless people, left records of yourself in virtually every form of media. You surround yourself with people who have taken in these records, and they can remind you of things and in effect, be an external hard drive. Having to outsource your memory sucks, of course. It's losing control and identity, and probably a bit of dignity, too, though personally, I don't think being a highly charismatic person surrounded by people who love you and are happy to help is terribly undignified. ;)

(And yes, you should totally be grateful you can trust the memories you do have. I have memory issues myself, and they weren't helped by a college roommate who actively fucked with my head. One incident she admitted to, but another...I still don't know if I just imagined the event, or if she was fucking with me when she told me it didn't happen. Looking back on it, I wish I could have screamed at her, "Bitch! Don't you know I have a family risk of schizophrenia and I'm at the prime age for getting it?!) Seriously, even now, I'm constantly analysing my perceptions to determine if they might be hallucinated.)
Reply | Thread | Link



browse
my journal
links
January 2014
2012 appearances