A Sunday Homily

So much of what we build, so much of what we paint, so much of what we create, is in essence a reflection of our realization and deep desire to ignore that we are going to die.

We are probably the only species to have evolved to the point where we recognize our own mortality.  We are certainly the only species to build churches.

We see our own death coming, and we are unable to accept it.  For our unique ability as homo sapiens to recognize and process the world around us and our seemingly singular place within it, is utterly at odds with our absolute inability to understand why.

This all seems so magical… how can it just end?

This connection feels too beautiful, how can it just cease to exist?

And so we construct ornate palaces dedicated to our immortality.  We build them with marble, and rhyme, and brush strokes, and song.

We build them with the other spectacular gifts we as a species have been given– those higher powers which set us apart, the kinder cousins of that terrible ability we have to relentlessly know.

To know what is coming.

To know that everything that is now, will not be.

So look at that gleaming façade of pink and green marble– surely that will last forever.
Read those fragile words inscribed on a white page, whose incandescence somehow sets your mind aflame– therein lies magic.
Listen to that soaring chorus and its smiling refusal to do anything but livethat makes me cry, that makes me feel alive.

Better yet: make more of these things.

For the beautiful gifts which have fallen upon us– those higher powers to create and reflect and amplify life— may indeed outweigh that terrible talent which dogs us: the awareness of death, of that which we wish we were not aware.

There is nothing impermanent about impermanence.
There is nothing fleeting, about going away.

You will always have been here.

So make your mark, if you need to.  Regardless, you will already have done.

Sing your song, if it soothes you.  And do so especially if it gives others ease.

Build your church, in public or private, even if that church is as small as a smile.

And listen, always, for the hymns around you.

For how we live and that we will die should not be of equal concern.  Only the latter is unchangeable.

 

 

 

 

 

Update: It’s Good!

Had an MRI this morning— the first one I’ve had since my 3rd(!) brain surgery, on June 24th. I like to try really hard not to worry too much or nervously anticipate these eight-week brain parole hearings, since they come at a relatively frequent clip, and will very likely go on for the rest of my life. I would rather spend the 59 days between MRIs working and writing and doing things I enjoy (like going down the shore with my family for a few days, which I just did, and enjoyed very, very much) rather than worrying about something that’s for the most part entirely out of my control. But this was the first one since that recent surgery, so I was “anticipating” this one… looking forward to seeing how well the tumor removal “took.”

Turns out it took pretty damn well. Doctor C.P. the Brain Surgeon (no relation, despite the identical initials) did a nice little number on me brains, and so in addition to feeling and looking relatively healthy at the moment, it appears that I am relatively healthy at the moment. So that’s good. That’s something to hang your hat on. For at least two more months, at least.

So to celebrate, I’m going to spare you my typical existential meanderings this time in favor of a regular old-fashioned medical update post, which is what this blog was supposed to be for in the first place, before my head started to get all (figuratively, artistically) swollen. So here goes:

• The MRI results looked good! Dr. Hu actually used the word “wonderful” to describe them. Which I found to be a bit highfalutin’, but hey it’s my brains he’s talking about, so I should take a “wonderful” and go home happy. Which is what I did.

• The area where the tumor had reappeared a few months ago looks nice and clean now, nothing more than a black hole (filled with cerebralspinal fluid, as opposed to infinitely dense matter).  This is all completely safe, in case you were wondering. All the useful brains are still there, just a little compressed and smooshed off to the side. They’ll be able to stretch back out into the hole if they want to, but there’s no harm if they decide to stay as-is.  Strange, but true.

• Here is a picture of the MRI scan itself. On the right you can see the image that was taken today, compared with the image (on the left) of my brain pre-surgery, back in June…
August 2014 MRI

 

• The angle of the two scans is a little different, but generally speaking what you’re looking for is the area in the center left side of the head.  On the left (June) MRI, you can see a little white nose-shaped blob.  That was Cancer!  And now, on the right, you just see a clean black hole in me brains where the Cancer! no longer is.

• So that’s great.  But keep in mind (as I must, both literally and figuratively) that the cancer was there the whole time– even during the last year when my scans were looking great– because it DID grow back.  So there was something there.  So there could still be some stuff there now.  Or maybe not.  There’s no way to know, other than the wait-and-see approach.  Which I’ve gotten good at.  The important point to focus on is this: “so far so good.”  And that’s very, very important.  That makes me happy.  That allows me to enjoy everything else around me that has nothing to do with cancer, which is a lot.

• As for TREATMENT, here’s the deal:  No more chemo, no more radiation.  For now at least.  No reason to mess with a good thing (other than cracking my skull open for a fourth time if it grows back again in the same relatively accessible place).   But this 3rd surgery did a nice little number on the re-growing tumor cells, and who knows, maybe they won’t grow back at all now.  Or maybe they will.  This is what I’m living with.  But I’m living.  Well.  That’s what matters.

• THE CLINICAL TRIAL:  The only treatment I am doing now, is another clinical trial.  This is called “Neurosphere,” (talk about high-falutin’), and is basically very similar to the clinical trail I did before.  It’s a vaccine therapy, intended to train my own immune system to recognize and destroy any remaining brain cancer cells.  This particular trial is brand new, and is being developed at my hospital (Cedars Sinai– a quick 4 mile jog from my house).   I am phenomenally lucky to be able to be a part of it.  Even if it does nothing.  It’s an option–  and options are in short supply when you have this type of brain cancer.  So hooray for the Neurosphere!  Oh and this trial is a Phase 1 trial, which means (among other things) that there are no placebos.  I’m definitely getting something.  And hopefully it does something.  Either way, it has no adverse side effects, so again…. lucky.  Lucky lucky lucky.  All I get is a few shots in the armpit (yes, they kinda suck) and boom, that’s it.  I get to (maybe) live longer.  Maybe a couple months.  Maybe years.  Who knows.  We’ll find out.

• HOW AM I FEELING?  I am feeling relatively well.  Quite Cancerful, thank you very much.  I’m mostly recovered from the surgery, and the chemo brain seems to still be steadily (if slowly) improving.  I am still slightly less than I was before all of this happened, but probably mostly in ways that only I notice.  My memory is soft, I lose my words more often than I’d like to, and I get randomly tired and have learned to pace myself and take naps.  All of this is frustrating for me at times, but I don’t have to remind myself that things could be much, much worse.  This much is obvious to me.  Hence me usually smiling when you see me.  (Unless it’s in the morning.  I still like being grumpy in the morning.  That hasn’t changed.)

IMG_0483

 

• GOING FORWARD: I will get a few more armpit shots, and I will continue with the bi-monthly MRI scans.  Things are calm for now.  Which is great, because I’ve got a lot of work to do.  Such as…

• I’ve been invited to speak at a Brain Tumor Conference at Cedars Sinai next weekend, which is exciting.  I’m not sure what I’m going to talk about yet, but I’ll almost definitely be cracking jokes of questionable taste, handing out Brain Cancer Cards, and trying to raise money to create a Cancer! Foundation, and to make this movie I wrote, both of which I believe very well might have the power to cure cancer.

The BRAIN CANCER CARD

• So that’s it!  For now.  Thanks to everyone for your continued support, here in LA and in PA and all over the damned place.  I’m lucky to have a lot of really nice people in my life, and even luckier to have learned to be a nicer person to (at least most of) them.

And thanks for reading.

See, having brain cancer ain’t all that bad.

Well how d’ya like that!

Inspiration

As much as you know you have to, it’s just hard having to convince yourself every single day to keep going, to keep doing this.

It’s just hard, and I’m just tired.  I’m tired of it sometimes.  Like right now.

And I’m quite sure I’m not the only one.

And I guess this is why we seek, and need, inspiration.

Because it’s hard.  It’s hard to keep your face and your feet pointed forward, unrelenting, despite the raging swirl of fear and uncertainty that licks at your heels, and perhaps undermines the entire path you think you are walking on.

This is why, I suppose, it’s important that we lift each other.

Since in those moments, when life is coming to us with ease, and with beauty (those moments do come; several of them came to me yesterday), we can create a reflection of that experience– that utterly bearable lightness of being that sails through our soul like a cool drink or a child’s laughter– to remind others who are struggling that it will not always be so.

This is what inspiration is.

It can take many forms: some as simple as a smile, some as elaborate as a song, or a painting, a movie, a joke, a heroic act, or an entire lifetime built from bricks like these.

Whatever form it takes, inspiration is a reminder — a missive sent back to Earth from the outpost of Ease — that things will not always be so.

You will laugh, again.  You will love, and be loved.  You will be moved by a song, brought to tears by a joke, deeply touched by an act.  You will be rendered speechless by something you see in nature that stretches credibility with its raging, searing, and utterly surprising beauty.

These things will come to you again.  Your burden will not always be so.  And rest, assured, it is shared by all of us.

So let us complain, together, to the world, to the wind, with a deep and honest sigh.

For it is hard.

But it is, also, beautiful.

And it will always be so, again.

 

 

(Here’s proof: after writing this, I just inspired myself, and was brought to tears, by something that someone did forty-five years ago.)

Well How Do You Like That?

There’s a story that I wrote before I became Cancerful, one that I’d been working on for a long time (I’ve continued to work on it while being Cancerful, and hope to one day work on it post-Cancerful).  It’s a story about our world, and about mankind’s place in it.  It’s not a short story.  It’s a long one, but a good one (and a scary one, and a funny one) that I’ve realized is pretty much nothing more than my attempt to process the insanity of what is happening to us, and around us, and because of us.  Climate change, cultural wars, species extinction (including, possibly, our own)– you know, those easy Sunday afternoon conversations.

The name of this story, which is about the end of the world, is this:
Well How D’ya You Like That?!

This has always been the name, and I’ve always known it is the right name.  But it wasn’t until just now that I thought about why this is the right name.  Why would I would give something so serious such a silly title?

The reason is this: the question is unanswerable.  And maybe the predicaments the story is about (climate change, cultural wars, species extinction, etc.) are unanswerable too.

Maybe some dilemmas are actually unsolvable.  And maybe that is our real dilemma.  And this is where I began to see the connection between that story–and that title– and having brain cancer.  And this is why I am writing this on this blog.

If some dilemmas/questions/problems are unsolvable (i.e., brain cancer), I find that the reaction I lean toward (or at least try to) is something akin to “Well how do you like that!”  Now, this isn’t a cop-out, or an attempt to laugh off or ignore with feigned ease things that are clearly and unarguably terrifying (climate change, cultural wars, species extinction, brain cancer…)

Rather, the feeling behind this beautiful (and beautifully funny) statement-question is essentially just marveling at the spectacle of life– at the impossibility, magnificence, horror, and beauty of the world– all at once.

Cancer:  Well How D’ya Like That!?

For if there is no answer to a problem–if there truly is no answer– then why not occupy ones-self with the beautiful unhinged perplexity of the problem itself?  Rather than A) turn away and ignore it, or B) invent solutions to it that you know not to be true.  (Even though these latter options are certainly attractive, and have their obvious benefits, it is not in my mind’s charge to wander down those paths.)

As much as I’d like to ignore, I can’t.
And as much as I’d like to believe, I can’t do that either.
Some people (many people) might find that tragic, but I would say to them:

The willing acceptance of unknowing (and, particularly, the unknowable) does not exclude you from truth.  (In fact it will, in many cases, lead you more quickly toward it.)

Neither does the recognition of horror– of the often unavoidable pain, and suffering, that the world churns out– lead one away from the ability to see, and feel, and bask in beauty.

And so, with my eyes wide open, I look at this world, at the hand I have been dealt, and I smile.

Because I can see.  I can smile.  I was dealt a hand.  (Two, in fact.)

I was given the gift of life!  And then I got Cancer!  And… well…

Well how do you like that?!

Isn’t that something?