A year.

well, I'm officially Cancer-free after a year.

On the one hand, this is pretty astonishing, and I really like not having Cancer.  I still have some memory issues, but in the main, I'm my same old fucked-up self.

But I'm a little more scared than usual.  13 months is about what folks with astrocytoma get.  I've had 12.  That gives me pause and makes me want to spend a little more time thinking about how I want this to go down.

From what I've read, the end of this is pretty ugly.  Not sure I want to wade through it, and I'm damned sure I don't want Erin dragged through it.

I can likely get home hospice (if I hang on another year I'm eligible for Medicare, and they do hospice).  But still. It means diapers and IVs for nutrition, and just generally not being me.

I don't want that.  When I'm no longer me--when I can't converse, when I can't make morbid jokes about death--I'm not sure I'd rather not just go to sleep and discover if there's something on the other side of this life.

I'll be horribly sad to leave Erin.  I'll be horribly sad to leave my family, friends and colleagues -- as much a shit as I am, there are people out there who will be sad when I die.

But. I'm going to die.  Maybe not too soon, but sooner than I'd like.

I want to go paris again. I want to go on long bike rides on lonely gravel roads amid cornfields and cows. ("Hello, ladies!" I always say to them.)

I want to teach another class or two.  If my life has had any enduring meaning, it is through my students. They amaze me, frustrate me, but mostly they humble me with their hard work, their concern and affection, and their trust in me.

I mean that and feel it profoundly: I am humbled by my students.  They have been the most amazing groups of young adults, ever.  So they will be what remains of me when I go.

I couldn't ask for a better legacy.  Some hate me, but lots of them are glad I had a chance to teach them some stuff.

What I hope I taught them, more than anything, is a respect and love of learning.

That's something you can carry all your life: curiosity.  I hope they do. And I hope that they also have the tools to know how to answer the questions that they will encounter.

Teaching is the coolest job there is.  Grading papers gets old, especially when it dawns on you that you've be correcting the same errors for 25 years.  But you get to leave something enduring.

And I tell you: the reaction of my students to my illness has been nothing short of flabbergasting.  (is that a word?)  I have been completely blown away by their concern, their generosity, their care.

I always had a sense that i got close to my students, that they knew I cared about them beyond what happened in the classroom.  But this has -- far beyond my wildest imagination -- showed me how much I have mattered in their lives.

I'm sad I only got to work with them for a few years.  I wish it could have been a decade or more.  They are amazing.  You ask them to try, they try.  You give them something that will stretch them, and they reach for it and get it.

I'm amazed.

So, I can die knowing there will be a little piece of me living on -- if my students have students, I trust they will know what my students knew.  I have some former students who are now "Dr."  I couldn't be more proud.

Wow.  This is ramble and unfocused.  But then, so am I!

So, I think I figured something out.

Most of this week and last I have been sad, which is a big contrast from the past.  I've been trying to understand why.

I think I know: I have more or less suddenly realized that my life has gone from one of optimism and wild future opportunities to one with a deadline, and those opportunities are gone.

Sobering to realize that you have far more past than future.

I still have some time, I think, given that my cancer has not recurred in over 7 months, but still -- I'm 57 going on 58, and there are relatively few opportunities for one nearing 60.  I figure I can still pick up the occasional class without jeopardizing my disability benefits, and that will allow me a chance to make some difference in the world, still, before I go.

And every class you teach, no matter how many times you've done that material, is an adventure.

Young people are amazing.  Though I have no kids of my own, I feel as though hundreds -- even thousands -- of parents have lent me their children for a few years, and without seeming vain, I think I have made a mark on many of them.  In a good way.  Fundamentally I think I'm a good person, and being the clasroom with me several times a week for years willl probably have a good influence.

And I so adore them.They keep me young, keep me thinking forward, keep me thinking of the future and not only the past.

So I do believe I will need to get in the classroom from time to time, just to stay alive and fresh an optimistic.  As long as I can do a good job (and fear of not being able to do a good job was the reason I opted to retire), I'd like to keep doing it.

But for now, I should go to bed.  Tomorrow is lawn chores, and i'll need all the energy I can muster.

Ciao!

Well, hell: the melancholies.

So, the last few days I have been feeling melancholy, and today I figured out what it is.  I have been thinking a lot about when I was young, and thinking about that for some reason really makes me feel sad.  Not sure what it is.  I am sort of stuck thinking of my 15-year-old self, and wow does it make me sad to think about that kid.  The idea of dying sooner rather than later seems sadder when I think of that kid.

I don't know if it's the idea that whatever opportunity that lost is really, honestly, now going to be gone.  I don't know if it's regret over things I didn't do (although I don't feel regret for things that I did, in the main). Some of it,  I think, is realizing that there are people that I miss from that time that I am never going to see again, and some of them were pretty important to me -- and I guess, in some ways, still are.  I wish I could find some of them before it's all over, but don't know how.

It's a pretty profound ache, and I do not like it.  Maybe when you go along living your life you never stop to think about the people that you will never see again -- it always seems there's a chance you will.  But not now.  :/

I'm sure some of this is also coming from the fact that I haven't been feeling very well for a couple of weeks.  I go visit the doc in a week or so, so that will be good.

Tomorrow is my big sister's birthday.  She has some right frontal lobe damage from a tumor resection back in 1987.  I hope I can get down to see some family this summer.

Anyway, I should try to sleep.

And another thing....

Not only do i worry about the loss of income, but this loss is coming on top of several thousand bucks in out-of-pocket medical bills.

Pooh.

Most of the places have been good about letting us pay a little at a time, but when you add them all up, its still quite a bit of loot to pay out every month.

Sigh.  Wish we could have gotten a single-payer system. (And so does my doctor...)

To Disability or not to disability.... that is the question. Whether 'tis nobler -- or something like that. (And obtw, Shakespeare was beyond brilliant.)

So, we are working on the decision about whether I should go on permanent disability.

I worry about two things. One is financial: it will mean a fairly massive cut in income, and thus a pretty substantial change in our lives. Things that we had planned -- or hoped -- to do, especially travel, are going to have to  get dropped.  And thereare other, smaller lifestyle changes that we will have to accomodate.  I find a lot of that scary.  For the past few years i have had the luxury of -- for the first time in my adult life -- not having to fret about money.  We haven't lived extravagantly, by any means.  But neither have we had to worry. Now, i think that worry will come back.

The second thing is whether or not I can develop enough discipline to do some substantive writing.  I've never been a good self-starter, and unless (or until) I can find a project that really energizes me, I'm not sure how well I'll do if left to my own devices.  I have some writing projects I want to work on, and I really want to continue with the ITM stuff and spend more time with those people (which would be something that would get me out of the house and make sure that I'm taking care of myself and not just sitting at home wanting to drink or something like that).

So, the quandary: do I go on disability, lose my identity as a teacher, and become something else?  I've certainly known lots of people who cobble together lives out of this and that, and don't have a career per se, but just do enough to get by.

Part of me likes the thought of that: just doing what we need to do to get by.  We don't need to be extravagant; we don't need a housekeeper.  I can probably cut wood with a friend and by helping him, get wood for free.  If I am home and can keep a fire going in the stove all day, we don't really use much propane or electricity at all for heat.  The summer will be interesting because I hate being too hot and sticky.  But I can adjust.  And hell, I may be in a bad way come summertime -- which means I will like the heat and not want to be cold.

So, lots to think about.  Being not poor, but at the same time, being forced to think about consumption a little more than we have in a few years.  Reduce our carbon footprint.  Live a little more simply.  Not buy so many toys.  I have lots of toys.

I can also try to pick up a class.  I can talk to the disability insurance people about how much I am allowed to earn without losing my benefits.  I really don't think I can go back and do my old job well, but that's not to say that I can't do something.  The real thing I don't want to do is grade papers.

My doc said that when poeple get this diagnosis, they can often have a choice about whether they want to spend their remaining time doing things they want, or things that they don't want to do.

There's something compassionate about how the SS administration treats people who are going on disability and have a terminal diagnosis: it is almost as though they have decided that they should not force people to continue to do work that they may not like or may not and so they give you a few years of doing what it is that you want -- or not doing what you do not want.

For me, I love to teach.  I love to talk about brains and how they work, I love to challenge kids to think about what makes people do what they do and not let the students rely on intuition or "common sense" (which is, it must be said, not all that common).  I love to teach about how science works and why we use it as a guide to what works and what doesn't work.

But man, if I could do all of the above and never grade another paper, I would be happy -- as my dad would say -- as a pig in shit.  Grading is pure drugery.  Working with students to make their writing better, or make their research better, is awesome, and I would love to keep doing that -- unforch, that usually comes along with grading papers.  Ack.

I could probably modify my classes so that I don't spend so much time grading and instead conference with students, talk to them about how to make their work better, and let them do the hard work of editing and revising.

I have done a lot of that in the last few years: I leave them alone to work either singly or in small groups, then meet with them and give them verbal feedback about how they're doing and what they've done.  They seem to be learning.  And I love it when they learn.

That's something that really turns my crank: watching kids get it.  There's nothing like seeing a kid in a classroom light up because all of a sudden they understand something they've not gotten, but have been trying to get.  And POW, when they get it, it's like the whole world changed.  I love that.

The sad part is that in my regular classes, as soon as they get one thing, I give them something new, and it's like the POW but from the other direction.

But by the end of my class, I have a group of the most methodologically sophisticated undergraduates there are.  I'm proud of that.

But we need to have something for students who don't want to go to grad school.  Right now we do grad-school-prep.  We do it exceedingly well.  But not all students want to do grad school.

So how do we acommodate both, the grad-school-bound, and those who just happen to like psych?  I have considered two tracks, but (without in any way taking anything from our students), I know that almost all would opt for the easier track, and then expect to get into a grad program (because that's what you have to do if you want to use psych, esp as a therapist or counselor -- which pretty much they all do.

(I thought I did, too, but they decided that talking to depressed people only made me depressed, also...  So I became an experimental psychologist and started doing research on brains that are not distressed.)

Okay, I'm going to stop this now because I had to take a pain pill earlier and have no idea if this is making any sense at all.  (I have had some pretty bad headaches lately, and that worries me....  Damn cancer.  Bastard.)

So, more anon!

Feeling better.

Bad headache day today.

Was forced to medicate it.

Feeling better, now.

I dont't understand why that happens. But some days, it is as though someone were hammering a nail into my head.

I hate that....

But thanks,  medicine.

Pain sucks.

But!  I feel better now.

Low day today.

They warned me.

But it still sort of sucks.  Tired.  Achey.

But!  I'm not dead!  that's a plus!

Not sure at all why i've been having these days where i just feel puny.  BP and pulse are a little elevated, a little headache, and a lot of tired.

This is a roller coaster.  One day it's all good, one day I just want to lay down and sleep.

Dr Taylor says to try hard not to give into the sleeping, so I'm writing a little and just resting a bit.  Often after a 15-minute lie-down I feel better.

So!  That's what I'm doing.

My advice ro you all is avoid cancer.  It sucks.

So! Round 1!

Sitting in the chemo unit at the cancer center; just got an injection of (what I hope to be) well-trained white blood cells that will go after whatever bits of cancerous tissue we didn't either get with surgery or the chemo and radiation.  Interesting.

I don't know if I'm in the placebo control or the experimental group.  I hope I'm in the latter.  Immunotherapy holds a great deal of promise for dealing with cancer that can't be gotten at with surgery (what I have that is left is likely scattered around and hard to get at surgically).

So, here's to successful clinical trials!  I expect to be cancer-free very soon.

So, more whiplash, only this time it isn't Kansas Spring weather.

So this morning my radiation oncologists suggested that I might stop thinking of myself as a cancer patient and start thinking of myself as a cancer survivor.  It's early yet, but I like his optimism a lot...

This is the same guy who just a few weeks ago suggested I might want to make a list of things I'd like to get done  this year.  :)

But I'm going to run with it.  I'll get more info from the medical oncologist on Thursday when we start the immunotherapy stuff.  She's a little more cautious than the radiation oncologist, so I'll wait to see what she says.

But in the meantime, that seems pretty good news.

And another thing...

So, here's another thing.

Yesterday was a scan day -- first new scan since treatments started.

It looks pretty damned good.  There's one small troublesome spot that took up a lot of the contrast medium, but it's very small and chances are good that it will get whacked by the maintenance chemo, or better, if I get in the experimental group in the clinical trial, that my own, specially-trained white blood cancer-eater cells will eat that shit up.

But on the whole, it was a very good-news day.  (I adore my medical oncologist: she is amazing and always gives me a hug before she leaves after we meet.)

One thing that I'm struggling with a little bit is being left alone.  I still have cancer (in her words, "there's no curing this") and it has felt good to be surrounded by people at the radiation place, or the Cancer Center in KC.  The thought, though, of this transitioning into a chronic thing that I just have to deal with on my own is a little scary.  It feels fantastic to be surrounded by those people, and the thought of being out here on my own is unnerving.  Yes, I will kick this cancer's ass, but I cannot do it alone and find the thought of going back to my "regular" life a little scary.  Being on leave has allowed me lots of time to process what's going on with me (and to write about it a little, thank you for reading!).  Not having that time is going to be weird.  It isn't that I want to be sick, but at the same time, I feel that I need to carve out some space to be sick and not forget that I have to save some energy for beating this disease.

So I've been thinking more and more about how important social media has been and how important it has been that I can feel all those good wishes and know that there are so many people out there who are on my side.  So I won't be alone in this.

But it's a little weird to get cut loose. I'll miss them.  They're smart, caring, people, and they mean a lot to me.

Other thing is that I am all of a sudden "normal" again, and it's back to the same old grind.  That's a little unsettling, too -- I was pretty unhappy with things last fall (not feeling good about the job, not feeling in control of things), and I don't want to step right back into that...  So my job right now is to figure out what I can do differently so that I don't feel like I'm wading back into the same mud that I left last fall.  I think I can talk to the Dean about that -- and will.

Really weird thing is that when I go to my office, it looks exactly like it did on December 6.  I just left work that Friday afternoon and didn't come back.  Odd that your life can be so truncated like that: my work life just stopped that day like a clock that ran down.  A frozen moment.  (And let me tell you: my office at the end of a semester looks a lot like something blew up in it -- it would only be a perfect frozen moment with papers suspended in mid-air.)  It's not unlike a little time capsule, sitting there on the cusp of my two lives.  I think a lot of two parts of my life: the part before that weekend, and the part since then.  Very different sets of concerns.

But!  I had really good news yesterday, and even amid all these odd feelings, I feel pretty good this morning.  There's hardly any cancer to be seen in my head.  (Did learn something interesting; "paradoxical progression": sometimes treatment can make it appear as though the cancer has actually grown.  They don't know why.  But I don't show that, so I get to stay in the clinical trial.)

And by the way, immunotherapy is pretty cool.  Brilliant idea, and has worked with other sorts of cancers.  And they are going to keep some of my stem cells, so I keep hoping that I'll be like Henrietta Lacks and my cells can go on helping people for a long time.  That would be a neat legacy.  To think that I could somehow help others with glioblastoma would make the leukaferesis worth it.  (Did I mention that involves them sticking a spear into my heart?)

Yay, brain.  Keep fighting!

So, here's a thing...

Well, here's something I've been musing on and off about for a while.

People seem to be (for some reason) impressed with the way I'm handling all this.  I'm not sure where that comes from.  I get "brave" and "strong" comments and feel like they're way off the mark.

To me this is one more thing to do, but that's all.  I have had a fairly laid-back feeling about it, and don't think I'm in some sort of denial.  I think I know what's going to happen, but am not feeling a lot (or not consistently feeling much) distress about it.

But that doesn't make me strong or brave or whatever.  It just is what it is.  If I do have a shorter time here than I was thinking, I surely don't want to spend it moping or being afraid or sad.  I just need to go on and live what I get. openly and full-on.

I wonder if it doesn't have something to do with some of the adversity I had to deal with when I was a kid.  After a while you just sort of resign yourself to the way things are, and do what you need to do to get through them.  That's sort of how this feels.

I can remember being in the hospital once when I was about 5 and had started to feel sorry for myself and my mom took me around that pediatric ward and showed me all the kids who were in way worse shape than I was.  That was a good lesson, I think.  Ever since then I haven't been tempted to feel pity for myself.

I just do what I gotta do.  But it isn't heroic.  It just is what it is.

Oh. Other thing...

So, other thing that I've been thinking about is the fact that my radiation oncologist recommended that I "make a list of the things I might want to get done this year."

I think it was a gentle way of asking me to make a bucket list.

And you know, there just aren't that many things that I haven't done that I really really want to do.

Fly an airplane?
Swim in the ocean one more time?
Go back to Europe once more?
Climb a 14-er?
Go for an extended bike ride on a trail, with overnight stops (maybe do part of the Katy trail)?
Maybe play golf once more?
Do some fun shit in New York?

I reckon there are a few things, but most are things that I've done and would like to do once more, not things that I've never done.

That suggests to me that I've been pretty damned lucky to have gotten to do so many things already.  Lived in the Dominican Republic.  Camped around Mexico for a couple months.  Lived in so many cool places, from Southern California to New York (Brooklyn, anyway).

So, the fact that I am having a hard time making a lengthy list is probably a good sign that something has gone right for me.  I started out sort of tense and painful, but things settled down when I became a teenager, and I had a good 40-odd-year run.

That's not bad, considering that most people, before the 20-th century, didn't live more than 40 years.

I have a short list.  That's a cool thing.

Nothing exciting...

Just sitting here thinking.  Tomorrow I'm going to get up and go with a friend to "celebrate" her last dose of radiation.  She and I carpooled for about a month, and it was sort of cool to have a friend going along with the same things I was going through.

I had my last one a little while ago (10 days?), and tomorrow is her last.  So I thought it would be fun just to go with her, say hey to the wonderful staff at the Cancer Center, and like that.

For me the end of radiation is not the end of treatments.  I get a new scan on March 6, and it will show us what's left of this cancer.  I expect a lot.  But they can put me on a maintenance schedule of chemotherapy that can go long-term (thank goodness they have specialty-pharmacy connections!) and I hope keep this stuff in check for a few years.

Earlier today I was thinking a little about the end and when it will come.  I just hope it comes in the summer or late Spring.  I do not want to be cold.  I want to be warm, snug, and not shivering.  I have been so cold since all this started (our really cold weather more or less coincides with our discovery of the cancer and the start of all the medical stuff), I'm just determined that however this plays out, I'm holding out for warm weather.

If I could have an ideal way to go, it would be in a lounger in the sun, and just go to sleep with the sun making my eyelids pink.  That would be warm.

Okay, not to sound whiny

(in no small measure because I'm not sure how to spell "whiny"), but this is an interesting phenom I'm noting right now.

So, I'm sick, and people want to help and do things.  But often, given my fatigue level or general not-feeling-good, I don't wanna.  But I find myself doing things, anyway, in order to allow others to feel better.

Isn't that odd?  I am not bothered by it; in fact, I like it (except when I'm really not feeling good).  I like being able to help people feel better.

But the oddness of it having sort of become my responsibility to help others feel better about my having a terminal diagnosis is just, well, a little striking to me.

But people have been spectacularly great to me.  So if I get a chance to give back a little, I'm grateful for that chance.

But it's become this sort of symbiosis.

Life is weird.  But fun.

So, what the fuck?

Just trying to get your attention.

Here's the deal: why am I not scared?  Why do I feel lucky?  Why do I feel that I have had a graced life when two months ago a neurosurgeon told Erin I had 18 months to live?

Weird, people.  Freaking weird.

Talked to several psych types about it, and they're pretty much as confused as I.  One says, "Well, it'll hit you later," one says "well, a lot people feel that way at the end," but hey: I've a long damed way to go before the end, and I intend to raise some hell and play some tunes and drink far more good beverages than is advised.

Why would a 57-year-old-man with a wife and a fun life feel lucky?
 on finding out that he has a stage 4 glioma that will surely kill him (barring a bus or bad bike crash)?

It's so weird to me.  I know I've talked about this before, but I still can't get over it.  I get sad from time to time, but in the main, I feel happy.  "Euphoric" was a word I used the other day.

Liberated.  I can write.  I can muse.  I can be whatever I want, now.  I'm not tied to a job.

But wow.  My time is short.  I figure good odds on 3 years.; slightly worse but still decent on 5.  Beyond that?  Who knows...

But man.  I have met so many good and wonderful people who have made my little journey so fun and interesting and unexpected.

Unexpected.

That's been my life.  Completely unexpected.

So, to all of you who have touched this strange little life, I thank you.  Sincerely.

I'ts been one wild ride.  But wow.

Just touching base....

So, what's happening?

I have 8 more radiation treatments, and a few days after that will get a new MRI to see what has happened.  I'm a little terrified of that scan.  It could mean 6 more weeks of radiation, or worse.

But so far I am tolerating treatments very well.  I'm starting to get some radiation burns around my right eye and forehead, but aloe really helps soothe those, and they will heal fine and fast once they stop blasting me.

After three days of very hi anxiety we were able to get the pharmacy to ship the correct number of pills for me to complete this first phase of chemotherapy.  But we were on the phone with everyone from the FBI to the insurance company before we finally got it resolved.  They showed up this morning.  These meds are astonishingly expensive ($15k/month), and so we were really sweating whether we were going to have to go find some in KC and just buy them without using insurance.  That would have been about $2500 for a couple days.

Not much else to report.  I can feel that my scalp is reattaching to my skull -- little tingles and stretches  Good -- I think I like it attached better than not.  I assume the bones are fusing, but don't get much sensation from that.  That's probably going to be another month before those bones are strongly fused.  I'll have to be very careful on the bike.  No falls, and always wear a helmet (which I do, anyway, and always have).

Had some ultrasound on my legs to R/O DVT the other day; I'm very short of breath all the time and my radiation onc doc is concerned about pulmonary embolisms.  But my leg veins are fine.  Ultrasound is weird: the sound of your blood going through your arteries and veins is trippy.  (I do suppose the alternative would be worse.)

Have been making an effort to get together with folks for lunches and things, or just trying to stop by and say hey so that they can see that I'm still here, still me.

I'm very lucky.  Masterful, god-like neurosurgeon to go that far into my frontal lobe, take out about 20% of it, and have me sitting here coherently writing (or mostly coherently).

I'm so overwhelmed by the care and concern shown me by my friends and colleagues, by people in my real as well as virtual circle of friends.  It's just amazing.

You don't know what you mean to people until something shitty happens, I think.  That's a shame.  We should try more often to let folks know how we value them before they're on the way to dying.

Okay, enough for now.  Even though there's no humidity in the house, I'm going to get the pipes out and see if they'll play at all today.  Doubtful.  They were born in Ireland, not Arizona....

Ciao for now.

Still wondering about that identity thing....

I'm still puzzling over what I'll be if I can't go back to teaching.  I've been a teacher for about 30 years (in one guise or another) and have found it to be something that works for me.  It's thankless work much of the time, but every now and again, POW, it's magic.

I live for that magic.  Or did, anyway. We shall see what happens.

I've a friend wants to help me work on some writing, so that might be something worthwhile.

I can keep working on the pipes, and perhaps one day play along in a small group who like to play Irish trad music.  But there's no living in that.  That's hobby.  And I don't think  that at my advanced I'll ever play pipes well enough to make any money at it, aside from the occasional funeral.

Seamus Ennis (perhaps the most famous piper, ever) said, "Seven years of learning, seven years of practicing, and seven years of playing, and then you're a piper."  Well, Seamus, I ain't got that many years.  So I'll just play for my own amusement (and believe me, some of the sounds i make are funny!).

But what do you do when you are 57, you have probably 5 years to go (if I'm lucky), and you're faced with the decision, who do you want to be for the rest of your life?  Freaky.

I'm thinking and planning on getting back into the classroom for the Fall; we'll see how that goes.  I'll want some fairly extensive cognitive tests before I'm going to try to teach.  If I'm still impaired as I was at the end of last semester, no way am I going into any classroom other than as a student.

Hmm.  Maybe I could take some classes.  Hmm.

Death and dying.

So, there it is, just hanging out there.  This kind of cancer gives you a year, if it's feeling generous.  3 Months if not.  I think with my treatments and the complete resection of the tumor, I'm looking at a year.

So, what do you do with your last year?  I intend to be on my bike every day this summer, heat or not.  I intend on writing.  I intend to be as present to Erin as I can be and not make our lives about cancer.  The cancer will have its day; it can wait.

I intend to have this be a bridge to reach out to some of my estranged family members.  I love and miss them so, and do not tell them that enough.

I think I want to do a last lecture.  It'll be feeble compared to Pausch's, but I think I would like to do it.  So many people have made me who I am.  I need to acknowledge them and what they did for me.

So.  I have some work cut out for me.  And no procrastinating -- at all, anymore.

Identities change

So I'm a little preoccupied right now with the fact that the most important part of my self-identity (college teacher) is likely gone.  No way can I juggle all the responsibilities of a full-time tenured prof and department chair anymore.  Brain just won't do it.  Treacherous bastard.

So, who shall I be?  Shall I try other ways to teach?  Shall I write? Shall I try to pick up an adjunct class from time to time?  Shall I sit in the park and talk about how our sensory systems work?

This is interesting to me.  I'm at a place in my life where i very literally have to re-invent myself.  I don't know how to do that other than to do something different.

We shall see.

And I have a really short window to do it in.  Like a year, if I'm lucky.

Wish me luck!  I have more in me to give.  I just need time to figure out how, and then some more time to do the giving.

Crappy Day.

Crappy day.

Friday the dispensary was supposed to send me 14 capsules that would get me through the end of this phase of treatment, but the dispensary sent 4, which means I will run out Saturday.  I've spoken to everyone from the FBI to the FDA to the Indiana AGs office to try to get some resolution to this.  It was very trying.  They were supposed to have sent 10 to me today, but did not.

So.  Pisser.  I may have to buy two or three out of pocket (at a cost of about a thousand bucks a pill) to get me over the hump.  It's really expensive medicine.  But if I can get just a few, my insurance may cover it all because I think I've pretty much satisfied by copay and coinsurance for this year.  And some people have been donating a little money to help us, so that would be cool.  And if we need to, I'll call beheadstrong -- I'm sure they would help.

But what  a pain in the ass it was to spend the whole day on hold or on the phone with people who didn't or couldn't do anything for me.  Pretty shitty.

But the team at KU Med is on it, our insurance company is pissed beyond measure, so it seems that we'll get it resolved.  But as one of the nurses said, "You don't need to be dealing with things like this right now."  No kidding.

So, a weird day of being totally consumed with disease, but on the other hand, it was a distraction from the cancer.

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!

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.

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.

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!

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.

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....)

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.

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...