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.