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Friday, January 31, 2014

Got that song "O, Death" from O Brother Where Art Thou in my head this morning.

It's comforting.

This, my friends, is the wildest ride I could have possibly imagined.  There's a novel in this, somewhere, if I could only write....

Only 12 more radiation treatments!  Yay!

Thursday, January 30, 2014

So, this is an odd thing.

I'm finding all this strangely liberating.  I can't begin to understand why.  Perhaps I'm wearier than I thought.  Perhaps I had (or have) more discontent with work than I was aware of.

But ever since finding out about this thing, I've felt liberated.  It's really weird.  Why that particular emotion?  I wonder if it's common, but people don't talk about it much.

In fact, people tend not to like to talk about death at all; we've managed to insulate ourselves from it in so many ways: hospitals, funeral parlors, and all the rest.  There're several industries that are more or less devoted to keeping death away from our thoughts.

There's a whole area of psych now called terror-management-theory, and the idea behind it is that when we are confronted with thoughts of death, especially our own, it makes us think differently about things.  I've thought over the last couple of weeks that TMT might be something that I could spend a little energy on; learn about it, perhaps find some little niche piece of research surrounding it.

But I still have that other project to try to connect dual-process theories of decision-making and motivated reasoning.  I think the results of such a marriage would be very scary to me as someone who really hopes that US politics can once again turn into something approaching a functional government.  But that cannot happen until both the right and the left can think rationally about the problems we have and at the very least agree on a common understanding of what those problems are.  Shit, right now we can't even agree on the language we use to describe things.

It's something of a mess.

--------

Much later.  Went to see the docs today; things seem to be going about as well as they can be.  We won't know until the post-treatment scans show what effect the radiation and chemotherapy have had.  The doc says there will be a lot of dead tissue in there; I assume that what functional glial cells I have left will eventually clean that up, but it's a little weird thinking about all those dead neurons.  But they are bad neurons, so if they're dead, all the better.  I just want to make sure that they get cleaned up.

Dendrocytes!  Get to work!  Clean that shit up!
So, all of my faithful 8 readers!  Thank you!  It means a great deal to know that I'm not merely shouting into that nasty Kasnas wind that is right now telling me to put more wood in the stove.

But here's what I'm amazed at.

There is nothing special about me. But if you look at the entire Western canon of "What must be read," you find a lot of fear of death.

I do not fear it.  Perhaps if I had children that would change things a lot.

But right now: no,  Bring it, bitch.  You want me, come get me.  I don't want my friends and family to suffer, and I wish I could share some of this "fuck you" attitude with them, but being as most are pretty religious I'm not sure i would work as well.

But right now, it's "Fuck you, death."  You can carry me some place, but it doesn't sound like any place I'd like to be. So, fuck you.  Sideways.

Tuesday, January 28, 2014

Hello!

  So, this eve a little less morbid.

I was once, but am no longer a believer.

But through my entire adult life, John Donne's Meditation XVII (from his Devotions on Emergent Occasions) has resonated with me.  (It's the "Never ask to know for whom the bell tolls.... thing.)

Well, through this discovery and operation and now recovery I have felt more support and more presence of others -- it's uncanny and somewhat unsettling to me: I wasn't in any way expecting that.  Prayers, good thoughts, well wishes, and food: amazing how much it has moved me and made me feel part of something much larger than myself.  I reckon having lived with the Donne all these years has sort of predisposed me to think of things that way, but it's never happened to me in such a felt, concrete way.  Wild.

Humbled, I am.  Humbled at the power of connection between people.  It doesn't have to be religious (although I do in some sense see it as deeply spiritual), but there's something about being part of the human experience that binds us together into a whole.  All are a part of the continent, a piece of the main.

So, I feel a gratitude that surpasses understanding.  A wholeness, a connectedness that I find amazingly comforting.

Sure, I'm going to have to shuffle off this mortal coil soon.  But man, have I had a richness of people who have walked through life with me.

Wild, isn't it?

Makes me wonder if something like this isn't at root underneath a lot of religion.

At any rate, I feel a deep gratitude to all who have expressed good wishes, and especially those who have sent me food.  ;)

I may not have a lot of time left, but I'll live it as a different man.
Okay, this is starting to feel too self-indulgent, too self-absorbed.  I'm not sure that's healthy.  No doubt I have a ton of stuff I need to process, but I'm not sure it's necessarily the best thing to do it in such a public way.  I can journal, and then maybe share some of the stuff that might be more generally interesting.

I'd like to turn away from the particulars of my own situation and try to generalize those to anyone in this situation.  Trouble is, I'm not at all sure how generalizable any of this is.

Cancer is, from what I've read, a particularly idiosyncratic disease.  The fucker.  :)  Everybody's is different.  Everybody reacts to treatment differently.

Being a sort of brain-guy (been interested in brains ever since I knew there were such things), it might be more fun to bring a little science into some of these posts.  Like: what is an astrocyte?  What do they (usually) do (when they don't go rogue)?

Of all the neurons in your brain, the majority are glial cells, sort of "helper" cells (or so we thought, for a long time, before we learned how much they contribute to thinking).  Sort of the Cinderellas of cells.  Sweeping up while the regular cortical neurons get to go to the Ball and have all the fun.  The Cinderella cells had to stay home and do dishes and shit.

No wonder they got mad.  I think I would, too, were I an under appreciated, and yet essential part of a healthy brain.  I'd be all up in those other neurons' grills.  "You think you're such hot shit?  Well, let us show you what we can do, you uppity neurons.  We will cut you.  You have made us feel particularly stabby."

And so, they did.  Not directly -- apparently astrocytes are somewhat passive-aggressive.  Rather than a frontal assault, they simply went rogue and caused enough swelling that the other neurons were impaired in their abilities to do their jobs.  "Oh, I'm sorry.  Is my edema bothering you?"

Heh.  I should write a play and all the characters would be brain cells.
So, last might I decided to do some Googling and find out what the end stages of this disease are going to look like -- both from my and Erin's perspective.

Ugly.  Easiest description would be to imagine a brain shutting down over the course of about 6 weeks.  One function after another would go, one by one.  Muscular control, cognition, and so.  I'll waste away.

Makes me think there's gotta be a bus out there with my name on it.  I just hate the thought of dragging everyone through a bunch of care-taking crap, especially at the end when I am minimally-responsive (or sleeping 20+ hours a day).  We did a lot of the end-of-life wishes recently, and many of the things we discussed were on the list.  So we have that settled, as difficult as it's going to be for E and my family and friends.  I just don't want to be in pain, and I don't want to be cold.  I hope when this finally goes down, it goes down in the late Spring or Summer.

Makes me think also of hospice.  Or that twilight sleep thing until you slide away.  I just don't want to turn the downstairs of this house into an ICU, no way will our insurance pay for more than the minimal nursing care, and Erin has a job and a life to live.

So, many things to think about.  This thing ends like a slo-mo train wreck.  Ick.

But!  I'm postponing that shit as long as I possibly can.  I still have some fun left in me and aim to use it.

Monday, January 27, 2014

A quick note.  In the movies when someone is told they have a terminal illness, there is usually some sort of strong reaction.

I didn't have that.  Not sure why, but it was more, "Okay, what do we do next?" sort of thing.

Movies are not much like real life, I reckon.  But I just find this sort of interesting.  I think my reaction to what the doc was saying would have been perceived as inauthentic in a movie or TV show.  They would have had to dress it up, somehow.  Weird.

And hey, this is not to say that others might have a more typical Hollywood response.  I'm just struck at how different mine was.

So there.  :)
Another Monday, another day of radiation.  It's so easy: I just go in, they clamp my head to the table, blast me for about 15 minutes, and then I'm done for the day.  I'm home by 9.  My regimen is anti-emetics at 6:15, Temodar (chemo) at 7:15, radiation at 8:15.  Then I'm done for the day.  All-in-all, not a bad deal.  It's something of a hassle to get up and out of the house in the morning, but I have a friend who is also doing radiation, so we carpool.  (Hell, seems like half my friends are dealing with one sort of serious medical issue or another.  Sucks getting old.)

The alternative to getting old, of course, is what I'm staring at.  It's really weird looking death in the face and yet not feeling the least bit of strong emotion about it.  I worry about the spouse (who does not deserve to be widowed now or ever!), and of course the rest of my family and friends.  I think (but do not know) that there will be some sadness.  But I won't feel it.

But I'll be fine.  I haven't intentionally played Pascal's wager, but I have tried to live a good life.  If there be something after this, and if there be a just god, then I don't feel like I have anything to fear.  (Of course, I could be wrong, but death-bed conversions never seemed like something a just God would really like.)

If there's not, I surely haven't anything to fear: I will ceased to be, and nothing can touch me.

So there.  Suck it, death.

This blogging thing is sort of interesting.  I can't recall the writer who said it, but he (or she) wrote "How do I know what I think until I see what I say?"  I feel a lot of that.  Most of this is me processing some fairly unusual shit (at least in my experience), and there's a fair bit of soul-searching and thinking that seems appropriate.

On the other hand, I'm not sure how generally interesting it is.  I'm going to try to avoid politics (which, to those who know me, will seem a monumental task -- at it is), and try to muse on life, death, friends, love, caring, and what it means to be a human.

I've been asked over the years what I think the purpose of life is.  Different churches will give you different responses, but after having done a lot of thinking about it, I still think the answer is "to be happy."  There really can't be anything more important than that, as far as I can tell.  In Catechism we learned "to love and serve God."  I'm sure many other faiths have similar justifications for our existence.  But being the scientist, I have to consider natural explanations for things.

It's interesting to be spiritual but not religious, to be spiritual but also completely naturalistic.

Other day I was thinking of John Donne's Meditation XVII (from his Devotions on Emergent Occasions) and how that has stuck with me as long as I can remember, during times I was a believer, but more interesting to me is how closely I have held on to it as a non-believer.

This experience has only reinforced it.  All the wishes of support I'm getting from friends and colleagues has touched me in a way I never, ever would have seen coming.  It has been powerful, and deeply felt.  Some of the people who have touched me the most deeply I've never ever met in meat-space, but only know them through the blogging community.  But they have my back, and a wealth of knowledge and personal experience to share with me, and it has buoyed me far beyond anything I could have imagined.

So thank you, one and all.  I don't think I'd be feeling this brave were it not for you all.  And the crackerjack medical team I have working to help me.  :)

Speaking of, I have to write a post soon about my wonderful (seriously!) experience at KU Medical Center.  Those folks are amazing, and as my wife said, every nurse and aide -- male or female -- who cared for me was "young and beautiful."  And witty, and smart, and oh-so competent.  I honestly had a great 5 days there.  (Of course, I was also medicated far beyond my usual limits and might have laughed even more because of that.)  But t was genuinely fun.  Yeah, there were those times when I was shitting myself uncontrollably and they were the essence of poise and good humor as they tried to stem the flow and clean me up.  But wow.  What a dedicated, smart, caring group of young people they are.

Nurses are my heroes.  Always have been, and always will be.  Sure, docs are important and all, but nurses do patient care.  And these did it unimaginably well.  I wish I knew who they all were so I could send them cards or something, or go visit and give them a hug and they could see how well I'm doing and what their hard work has done.

Okay, enough for now.  Chores.  To quote the spouse, "You still have two good arms and legs."  Reckon I need some sort of cancer of the legs and arms to get a break around here.  ;)

Ciao, all.  More anon!

Sunday, January 26, 2014

Okay, this may be a TMI, so feel free to pass it by.  But it's been on my mind, and that's what this blog is for: getting things off my mind.

I was born with a birth defect, and among many other things, had no urinary sphincter.  So that meant I was incontinent.  They tried everything: probably ten operations, but nothing worked.  I wore diapers until I was 13.

When I was 13 they hit upon a surgical procedure that would take part of my lower intestine and turn it into a urinary bladder.  It's still hooked up to the butt, but it allowed me to have control over my urine for the first time ever, except there was some tiny tendency to leak a little if I slept very deeply. No big deal: I would stuff a towel or washcloth into my shorts at bedtime to catch what little dribble might sneak out.  It would be rare, but it happened.

Dealing with that was nothing like the ammonia burns I would get from wearing a diaper all day at school.  Or having to deal with diapers as a teenager.  It was no fun at all.

So you can imagine how liberating it was to not have to wear them, to be continent.  Amazing is too trivial a word to describe it.  But it was amazing to not have to worry about that.  I had to sit to pee, but then at least half the world has to sit to pee, and they seem to do just fine.  It could occasionally be awkward were I not with people I felt I could trust with that "secret," but compared to what it was like before?  It was nothing at all.

Well, dammit, one of the symptoms of the edema I was dealing with pre-op was some incontinence.  Not a great deal, but some.  (There was one epic event I will spare you, however.)

Now that they're irradiating that same tissue and pissing it off, some of the symptoms are returning, among them, some of the incontinence.

Well, fuck.  I thought I was done with that shit 40+ years ago, and here it is, again.  It's not constant like it was when I was a kid, but just a little here and there.  But annoying, dammit.  I did my time in diapers.  13 years is a long time to have to fuck around with diapers, and I had sort of gotten used to the idea that I wouldn't have to wear them anymore.

But shit happens.  (That, indeed, is a wry joke.)  God bless those nurses and aides at KU Med for keeping me clean.  I was, from time to time, a font of runny poo, and they graciously and tenderly kept me cleaned up.  Amazing young people to be that poised in the face of so much (literal) shit.

So, anyway, I'm annoyed.  It seems silly to be worried about incontinence when I have a cancer growing in my head; on the other hand, having a cancer in my head seems enough to worry about without having to worry about pissing (or worse) myself in public.

So there you go.

Funny how we go from being babies and having a set of needs, and then as life rolls around to the other end, many of those same needs return.  It's that old what walks on four legs, then two legs, then three legs riddle.

Is there a football game on today?
Sunday morning.  I love Sundays.  Low-strain, low-agenda days for me.  I'm sitting here in front of the wood stove, nearly sweating (it's amazingly warm today -- over 40!) -- I light the stove on mornings like this just to take the overnight chill from the house; the sun will do the rest as the day goes on.

Okay, this is weird, but I almost feel guilty that I feel as good as I do.  I'm sick -- very -- and yet the disability this semester is going to give me some time that I would never have had, otherwise.  It's almost as though I feel like I should be sicker -- or feel sicker (you don't get sicker than terminal cancer) -- to justify the disability, but given the way my memory, especially short-term memory, and my vision are working (or when they fail to work right), I know I can't do my regular job effectively.

I would be an *awesome* greeter at Walmart, however.  :)

I could totally greet the shit out of people.  But only for about an hour at a time, then I get weary and have to sit down (or sometimes lie down) for a while until some energy comes back.

We're tapering the steroids, now, so I'm expecting to have a bit more of the pressure headaches than I've had so far.  They aren't too bad, and are usually quite controllable with ice and some ibuprofen, but still, I don't like them.  When I go see my medical oncologist this week I want to ask her about the end stages of this disease.  I have a big-ass party to plan: I'm going to get to enjoy my own damned wake.  What fun is a wake if you're the dead one?  So my plan is to have a party while I still have enough cognitive awareness that I can enjoy a beverage, some tunes, and some conversation with the people who love me and whom I love.  I don't want to wait until I'm some incapacitated blob of jelly.  It'll be a party, dammit, and not funereal.  I want peoples' last recollections of me to be me having fun with friends.  That's a nice memory to have.  Better than a memory of me wrapped in a blanket moaning, or worse, unconscious.  I wouldn't want that.

So my plan is to get as many of my friends and colleagues as possible, a couple of local bands that I know and am friends with, many ice chests with beers, a pleasant, warm evening, and just let go until someone throws up.  (And even then we'll just clean them up and carry on!)

So, party, people.  My place.  Sometime in the next couple of decades.  Big-ass party.

Friday, January 24, 2014

So, this evening I am a little preoccupied with the fact that people have expectations about how I should be feeling, and I'm more than a little ready to tell them to leave those expectations at home and just deal with how I'm feeling.  I'm feeling what I'm feeling.  Largely, I'm feeling damned good.

So don't go expecting me to be feeling bad all the time.  I don't want to feel bad.  If it's all true, I've a limited amount of time here, and I don't want to spend it feeling bad.  I want to feel good.  I want to grab what life I have and squeeze the shit out of it.

So, you want to feel bad, that's okay by me.  But I don't think it's fair that others' feelings or wishes should dictate mine.  Maybe I don't have the proper degree of reverence for many folks.

But fuck that.  It's my life, it's my death.  I get to deal with it like I want to.

Neener neener.
And so it goes....

Not sure what to write about tonight, but something weird happens when you decide to blog and someone actually reads it: you begin to feel somewhat compelled to not disappoint.

So there.

I thought in a day or so I'd post the note that I sent to many of my colleagues explaining how all this went down, but I'm a little weary this eve.  Big day, and the treatments are starting to increase my fatigue.  Tomorrow is going to be a low day.  I will play pipes, putter around the house, do some exercise, and read.  Otherwise, pfah on the world.

I have a chance this semester to work with a good poet/poetry teacher on some of my stuff, and I'm going to do that.  So from time to time I'll put some up here.  She wants to build a book and I don't know how copyright works, but I think it's okay if I post my own stuff here and then later it gets an imprint from some other place.

We shall see.  (And besides, I don't yet know that I have enough pieces.  Seems 40, minimum, and I've got good starts on about half that. So....)


Wednesday, January 22, 2014

Okay, one more thought for the evening.

The transformative power of learning to forgive oneself.  It is astounding (thanks, Paul, for making me think of it).

I spent 5 years a Jesuit, and we did retreats at least annually.  The first part of any retreat (at least in those days) were called "disposition days" and were aimed at getting you in a psychological space that could tolerate some hard and scary truths.

Part of the disposition days involved looking back at things you had done and coming to understand that in the main, we do the best with what we've got.  We shouldn't judge ourselves so harshly (or others!).

That matters a lot.  Maybe it's brain damage that's making me peaceful with the thought of my own demise.  Or maybe part of it is that I have done the best with what I have and leave few regrets.  (Yes, I have regrets...)
And so it goes....

I find myself this evening in a sort of existential quandary.  It appears to me, that -- at least as far as I am concerned -- I really don't care that I'm dying.  It holds no fear for me.

Today I was noticing things that only a living consciousness could appreciate, and was glad for the chance to have experienced them.  But if I'm gone -- I mean really, really gone -- then i will not sense the lack of those experiences, and so will really miss nothing.  I do feel some sadness for those who care about me and will miss me, especially the spouse (who is, to say the least, the most astonishing of persons).  I'm also feeling a little more connected to my family than I have been in some time, and I sense they will feel a loss when I go.

One thing that I've been thinking about is right frontal lobe damage and a flattening of affect.  My sister has damage in her right frontal lobe, too, and has a very flat affect.  It makes me wonder whether or not the cancer got to a piece of my brain that might have made this whole experience a little more troubling.

But as it is right now, I really don't care.  I love cycling, and I love my wood stove (especially on nights like tonight when it's ten degrees outside and a lovely 67 in here), I love my little house and my little life and my students.  I love love love to teach.  But if I'm gone, really really gone, I won't be there to sense the lack of it, and won't feel its absence.

So I do not fear dying.  I fear the pain of it, because I think it will come with lots of headaches and increased incapacitation (I will ask the doc about the end stages of this when I next see her -- I'm not her first astrocytoma rodeo), and I don't want those things.  I'm already seeing some of the old symptoms come back as the radiation blasts those same pieces of brain that were impacted by the edema from the cancerous cells, and I worry about that.  They were some fairly nasty symptoms.  But many of them can be controlled, and those that can't, well, I'll just deal with it.  As long as I take care not to hurt myself.

But we shall see what we shall see. I'll fight to maintain as much cognitive function as I can, and if the headaches get too unbearable, I'll just have them drug me up until I slide away.

Sunday, January 12, 2014

And so it goes, post #2.  Whoo hoo...

Last night I was writing and my pen ran out of ink.  Pissed me off.  I'm a fountain-pen drafter, so when I write it's a little bit of a production, usually involving lots of ink-stained fingers...  And so it did.  Got it all sorted out this morning, though.  The reservoir in the pen wasn't working well, so it took some nudging to get it to do its little inky job.

But!  I was musing on how much the support of others has meant to me through this.  I am not in any sense religious, but there's been a really strong feeling of support, and I don't know what I would feel that.  So the musing last night was on John Donne's Meditation XVII from his Meditations on Emergent Occasions (the "no man is an island" one).  In spite of my irreligiosity (and even outright atheism), that notion has run strongly through my life: we are all part of a whole, and "if a clod be washed away by the sea, Europe is the less, as well as if a promontory were or a manor of thine own or their friends' were."

So in some very real sense I am buoyed by the support that others have expressed, and in a deep and to me a very surprising degree.

Physically things are going very well.  I've had little-to-no side effects from the medication or radiation or chemotherapy, and aside from a little bit of dizziness the last two days, nothing at all to remark on.  I'm glad of that.  I know that the effects are cumulative, and that the worst is by far yet to come, but I really like the physicians on my team and they seem hell-bent on making this as easy on me as they can.  They all know this cancer will kill me, but they're working like hell to make sure that it takes a damned long time to do it.

I like the thought that it will take a long time.  I got important shit to do, still.

Not exactly sure what that is, but my sense is that I'll grow into an understanding of what really matters and what doesn't.  I hope so, at any rate.
So, this is weird, speaking to the void.

I have little by way of illusions that many will ever read these writings, but somehow feel compelled to get some thoughts down about what's going on.  It's sort of serious shit.

I'm one month post-op to have a resection of a large, right frontal lobe astrocytoma; the prognosis is not good for these guys, although life expectancy seems to climb every year.  Treatments are getting more  effective, if no less barbaric.  The median survival stats are recently about 18 months, but there are folks running around who have been living with these things for decades.

I hope I get some decades.  I'm not done yet.  I just turned 57 (found out about the cancer almost on my birthday -- yay!).  So it'd be nice to get another 20 years to wrap some things up.

I'm a college teacher, an experimental psychologist by training.  I teach things like cognition, learning, sensory processes, perception, psychopharmacology, research design and analysis, all the science-y parts of psychology that none (or very few) of my students are interested in.  But I love the science...  I am, in short, a nerd.

I like knowing what we can know about how brains generate behavior, and about how we can do careful research to identify how it is that brains can do that.

I'm getting some sort of caution from Blogger that I need to save this, so...