With lasers! Question: what’s cooler than having five brain surgeries? If you’ve been following this blog, you probably have an idea where I’m going with that, and you might be thinking either “oh no…” or “SIX?!?” or some combination of … Continue reading
I’ve long felt that the only thing worse about blogging than the word”blog” itself is blogging about how long it’s been since you have last blogged.
But now here I am, doing just that. (albeit in a somewhat backhanded way, So I’ll allow it . Just this once.)
n the few months since my last post, I’ve actually written down quite a few brain chance notes that I thought I might put on here. But looking back at them, I saw that most of those notes were mostly just variations on the following:
“I’m sick of being tired.”
But that sounds like complaining, And I don’t like complaining. So none of my “ideas” From the last few monthsHave made it onto this blog. (Lucky for me, and for anyone bothering to read this, Because otherwise it would have just been yet another complain–a–thon-2017. And we’ve all had enough of that lately. )
But enough interesting developments have occurred just in the last few weeks to make me feel like I really needed to write an update.
So here goes.
I’ll cut to the chase (which I typically am utterly incapable of doing, but right now it is incredibly difficult and complicated for me to type, so I am going to try to make this as concise as possible.
So here goes… (still meandering around–rather than cutting to–the chase 😉 OK screw it here goes:
A few weeks ago, I had a seizure, at home. (That’s it The chase! But wait, there’s more…)
I only passed out for a few seconds, but when I woke up, the entire left side of my body was completely numb and useless.
Paralyzed, in other words.
- That was about three weeks ago,And while things have improved quite a bit since then, it is still very difficult for me to type. (as is my fifth craniotomy last summer, my eyesightIs also quite goofy, so thatDoesn’t help.)
So I am actually writing this using the dictation feature on my laptop. (If there are any strange misspellings typos or other oddities in this post, that is why.)
- Thank Siri for letting me still be able to write without using my hands, but… it’s not easy. (she is a fickle digital assistant),For example, now I have to say things like “comma” and “new paragraph,” Instead of just typing it super-quickly like I used to. This kind of messes with the flow of writing, but it works.So I’ll take it,And I’ll try to stop complaining about what a pain in the ass is. (It is a huge pain in the ass.)
So, The reason for the seizure was, as you might have guessed, the Cancerful goings on in my brain.There have been some more developments up there recently, such as:
- On my last scan about a month ago, We noticed some exciting new Cancerful developments. That is to say, there is some new stuff in my brain(cancer, perhaps)that appears to be…( I will avoid using the word “Spreading,” since”Cancer” and “Spreading”Are together too much of a Ominous cliché,even for me. And I don’t want to scare anybody––Especially myself.)
- Wait, where was I?
- Oh yes:There is some new stuff in my brain, Which might be cancer, that appears to be…creeping” fro my original tumors cavity up into a different part of my brain.And this different part of my brain is the part that controls motor function on my left side. There is also some swelling in that area, which can cause just as much havoc as cancer (#fuckswelling .So when I had that scan, my doctor told me to be aware of potential weakness or loss of feeling on my left side.And then,It happened: I lost everything on my left side.This was mostly a result of the seizure, Which is good in the sense that When this happens, you typically get those functions back relatively quickly. It’s Probably not permanent ,like damage from a stroke would be. And indeed, three weeksAfter the seizure(3w.A.S.),I am now again able to hold things with my left hand, Which is nice.Buttoning a shirt, however,remains something that is now totally beyond my grasp ( pun very much intended).And tying my shoes?Forget about that. I have a newfound and profound appreciation and respect for lefties––Particularly my own,who I miss terribly.
- Because of the results of that last scan, we had already decided that I I would begin a new chemotherapy treatment called Avastin. Avastin is one of the few chemo treatment options for GBM, And unlike the oral chemo I’ve done before,This one is the old-fashioned kind where you sit in the hospital and get an infusion for an hour, While you watch daytime soap operas. which I had never done before,So that’s fun.
- And in addition to its cancer– fighting properties, Avastin also can help with brain-swelling problems, so I started it immediately, In the hopes that it might also help with my partial paralysis. I have had three infusions so far,Without any bad side effects at all. And since my left side feeling and movement is definitely improving, it could very well be helping with that (Remains to be seen what it’s doing with the cancer.)
I wrote some stuff down the other day that I intended to put on this blog, but I have been dreading the thought of trying to type it up, So it’s been sitting in my notebook since then. But now that I am halfway through this post, And feeling a bit better about the typing– with– my– mouth– thing,I’d like to share it with you. So here goes: This is what I wrote with my right hand, about a week ago…
I’m restless.Which is a bad combination with exhausted.
This weird cocktail that is my new lifeIs ill – conceived, ill-prepared.(Let’s call it “a Cancerful,” (Splash of chemo, On the rocks.)
Some sips are so bitter, it stings.
This is one drink that is tough to finish:In addition to its bitterness,It’s too flat ,and it often threatens to lose my attention. (Why bother finishing a drink,if it tastes like shit, and do you know exactly what you’d rather be drinking?)
I often just want to dump it out in the sink…But I am still thirsty, and I have no idea what other kind of drink I could get around here anyway. so I keep at it…
These words themselves are an experiment…Unable to see very well, or use my left hand,I am forced to write differentlyThan I would.
Than I did.
Perhaps this is a good metaphor for my entire life; substitute “do” for ” write”in the sentence above, and you’ve got a good summation of my current situation:
“Forced to do things differently than I would.”
“Than I did.”
But no matter, because it’s the living that’s the thing, right?
For that is what you fight, right?
No matter that you can no longer drive, nor probably even ride a bike if you tried– Let alone a motorized one– Forget about that Previously favorite part of your life (And somany others like it).
But it’s still life! Right?
“You’re still alive!” the universe swears, pointing to the several healthy Last sips still left in your glass–
No matter whether you see That glass as half full, Or half empty… The important thing is whether there is something left in there– Whether they’re are sips still left which you might drink… and if you will taste them…
and if they will taste good to you.
Clearly there are quite a few sips left– Perhaps even a gulp (Depending on how I ration it.)
And so you reach for the glass with your right hand (the left too unsteady; Unable to grip as tightly as before, you already know)
And so you bring the class to your lips, and you drink.
Glancing down with your blurred,unreliable eyes, you see enough to know there is still a good amount to drink in there…
And as the scent of it wafts up to your nose, you can already tell that…
it will taste good.
And it does.
Hours later––Weeks, perhaps– –I want to type all of this up, but I’m wary to even begin; As you would be to dive into even your favorite hobby, with one eye blinded, and one hand tied behind your back.
I don’t want to make a mess of it, after all; and frustrate myself so much that things feel even worse than before…
But I also don’t want to miss the opportunity to show myself thatI STILL CAN.
I need to see that, even if it’s only with one eye.
i mean, pirates need inspiration too, aye? 😉
Argh, ’tis true. They do.
And so ,even though
There is no patch on my eye,
No hook on my left hand,
I will still
smile a crooked pirate smile,…
AND IWILL TRY.
For doggedness is probably still in the end,
A Pirate Who Wishes To Sail On’s best friend…
And to those who wait patiently for me by the shore,Perhaps even with a fresh drink for me, Always ready to give me a hand,I thank you.
It is your steady light; your Unwavering presence, that keeps me afloat In these murky waters.
It’s quite a different thing to look at your day (or your life) as something to get through, like a tedious play or movie that’s got you shifting in your seat and looking toward the exits.
Because really, if you’re just waiting for it to be over, then why’d you buy the ticket? Aren’t we here to enjoy the show? Isn’t that why we drove all the way over here and got a sitter? To enjoy the show?
The answer, of course, is yes. But the answer is also that the show has to be good; or at least good enough to keep us from fidgeting and looking at our watch and wondering when it’s going to be over so we can get back in the car and go…
So here we are, at the show, and we’re hoping that it’s good. And sometimes, it is good. Sometimes, for brief flashes, it’s really good. Transcendent. We feel like we’re being lifted out of our seat, weightless, it’s so goddamn beautiful what we’re watching unfold before us– right there in front of us, in ways we can touch and smell and hear and feel! It makes us float!
And hopefully– ideally– we keep on floating through those inevitable parts that aren’t so great; that are boring, or painful; ill-conceived and unbearable; sometimes so unpleasant that it sinks us back down in our seat and makes our ass hurt, and has us glancing again toward the exit.
I never like this feeling, of looking at my day (or my life) as something to get through. Nonetheless, I find myself all to often inhabited by that itchy perspective in this, my (Cancerful) Life.
I guess I just want to enjoy the show.
I mean I’m here; I bought the ticket and got the sitter and drove all the way down here and everybody’s been saying it’s so great (well, some people have been saying it’s great– other people had mixed reviews) but this part is kind of boring and why am I having such a hard time paying attention, I normally love this kind of show… what time is it, do you think it’s going to be pain in the ass getting out of here? Oh god I hope there’s no traffic, did I forget to–
SHHH! Look! Look at that– I think there’s another good part coming up! Shhh, I don’t want to miss it…
It is not up to us to worry where the sky goes,
Unless that’s the place
We want to go, too.
It should not be our burden,
To wonder why the moon glows.
Unless in that wondering,
We find something that makes us glow too.
We are but flickering lights,
Bundles of energy released by the sun,
so many years ago,
so far away from today.
brought together here, but only for an instant.
The longest one we’ll ever know.
And as if by some magic,
Somehow sewn together,
into things that can feel, and lose,
Little packages of energy,
bound together with such force,
and with such withering complexity,
that it hurts sometimes.
But sometimes, it glows.
A match is lit,
and our life is struck.
And the way that flame twists
is all we’ve got.
But the smoke that is generated,
whisping away into air…
that will speak of us.
And the gleam that our light leaves
in the other’s eye, as they pass by,
so do we go with them.
And if, by chance, our flame might ignite another,
Then we alight,
Not nothing at all,
But everything, always,
Sometimes, the tiniest thing imaginable,
So grand it could make you cry.
I wrote a poem this morning, thinking of– among many other things–
a red wheelbarrow.
Here it is:
So much depends
inside the grey
I realize now that the sadness has chased me all of my life. It was always there, if not completely felt: something to avoid, something fleeting but looming. A thing with a foul flavor that silently pushed me toward things that tasted better.
Like laughter, and adventure… sight, and song. Kinship. Love. Things that filled me with the warmth of life, and made me less afraid of the cold hands of sadness, which remained invisibly behind, ready to reach out on any day to lay with a chill upon my shoulders, or in the back of my mind.
And so I think perhaps it is my life-long aversion to that feeling– that sad weight of worry, or fear, or pain– that has trained me to keep my head above water; to paddle like hell with my feet and my hands and my thoughts, as long and as hard as they will possibly allow.
Because even when the cold tide is rising, inevitably, above your chin and your lips and to just under your nose, there are still wisps of breeze blowing by across the surface of the water, and in those gusts you can still catch the most gorgeous of scents, and hear the most delightful of sounds: laughter, and melodies. These fleeting sensations are still yours to be heard, and smelled, and seen and felt, even if you’re gasping for air and the water is rising and you know that despite all efforts your head will inevitably fall below the surface.
But until then, just breathe. Because you can still swim–even if it is only to save your life–and while you’re desperately treading water, the sparkling magic contained in each gasp for air bubbles with more beauty and meaning than any of the easy breaths you once drew, on bored summer days when you lay on the beach, lazy with life.
But even then, as you sat breathing easy on that sunny shore, the sadness would suddenly tap you on the back of the head, your eyes would open to its presence, and you’d realize at that moment that you had a choice: to lay there and let the cold shadow of fear fall over you once again, or to get up and move toward something warmer; something that maybe would make you smile.
And so, perhaps without realizing the power of this motion at the time, you would stand, with some effort, and step toward the water. To go for a swim. You would do this, to create a good moment– and with that, perhaps, a good day. And then, with enough of those strung together… maybe a good lifetime.
Because you always liked swimming. Swimming made you happy. And a lot of times, the water was warmer than the shadows that lingered on shore.
So perhaps I have sadness to thank for being happy. Perhaps it is the struggle that has kept me swimming… and has taught me how to keep my head above water, so that I might still catch those sweet gasps of air.
However it happened, I’m grateful for all of it. Because man, can it be nice.
And the view of the beach from out here in the water is just as beautiful as the other way around…
Weird morning. A lot of death in the air. And coming from someone whose every day reality is spent wading ankles-deep in mortality (or brain-deep, if you prefer) death being weird is itself kind of weird.
So it got me thinking. Which it does for all of us, I suppose. Thinking about death is the most difficult and peculiar train of thinking there is, since it feels so desperately important to figure out, and yet it rarely ever allows for any sort of acceptable conclusions, minor or major.
It’s difficult. Even just thinking about death is difficult. And that’s saying nothing of actually dying… (See what I mean? isn’t that difficult to think about?)
Anyway, what I’m getting at is is this: yes, it’s difficult– it’s really fucking hard, in fact. It’s hard to understand, it’s hard to accept, and it’s especially hard to live with.
But that’s alright. Some things are just hard.
The least we can do to ease our myriad burdens (this one in particular) is to avoid beating ourselves up for our inability to comprehend the incomprehensible, to accept the unacceptable. Better to nod our heads in sad recognition of the fact that we just do not and maybe will never understand certain things. Like this one particular thing. And hey– that’s OK! Because it’s hard! It’s really hard!
Of the many lessons I’ve learned in four years spent brain-deep in The Most Peculiar Of All Subjects, this is one of my favorites: That some things are just hard. And that’s OK. It’s OK to not know what to say sometimes, or even to think.
And one of the best things you can to do to make things a little easier is to accept the fact that it’s not always going to be easy. We’re not always going to be able to figure it out.
But that’s OK.
Sure, it sucks. Yes, it hurts. Some times we find ourselves standing in front of a wall that seems so impassable and incomprehensible that we want to just bang our heads against it and scream. And make ourselves hurt even more, out of frustration that we can’t just magically make it disappear.
But then, if wait long enough, something will change. Something will come, as easily and lightly as this morning breeze, and we’ll open our eyes, and rub our heads and look up: and that wall will be gone. Or at least half as tall as it was.
And we’ll smile, and we’ll go on.
So that’s what I’ve been thinking about this morning.
And it reminded me of one of the other lessons I’ve learned about death, in my last couple of years wading through it. Here it is:
There aren’t many things you can still do, after you’re dead. But one thing you can still do is this:
You can still make people smile.
And that’s really something, isn’t it?
This morning, someone who is no longer here, and about which I am terribly sad, still managed to make me smile. Just thinking about her… I cried, but then suddenly I smiled.
And as difficult as all of this is, that one little part didn’t feel difficult at all. That smile came easily, and honestly, and it felt true. It felt like a gift. And that gift is as real as the sadness, because here I am smiling again, right now. Because of her.
She just did that. Even though she’s gone.
Now that really is something.
You know what’s one odd aspect of Being Cancerful (among the many, and they’re usually odd) that I hadn’t paused to notice before but for some reason suddenly just did? It’s this:
Being used to being sick.
When you’re Cancerful, sickness comes so frequently, and in so many forms, that it becomes a part of life as normal as eating or breathing or using the toilet. And so, like any normal part of life, you start to get used to it. Even if there’s nothing normal about it at all. Even if it’s super weird. (Then again, many of the things we consider a “normal part of life” would be super weird if you’d never done them before– I mean, how strange would it be to open a hole in your face, and then stuff a bunch of heated up plants and animals into it? And then, hours later, to squeeze those same plants and animals out of another hole on the other side of your body, after having somehow absorbed many of their key ingredients and turned the leftovers into something stinky, so that you can keep living? That sounds really weird, doesn’t it? But it’s not weird at all, after you’ve done it a couple of times.)
Similarly, when being sick becomes a regular part of life, you get used to it. You get used to barfing. (You get very used to barfing.). You get used to aching. You get used to passing out (both involuntarily and by choice). You get used to eating pills (SO many pills!). You even get used to feeling as shitty as you’ve ever felt from any fever or cold or virus you’ve ever had in your life, but now on a daily basis.
You get used to being sick.
And just as often as not, this “being sick” is not even from the cancer, but instead from the things that you’re choosing to do to survive the cancer. Like chemotherapy. Or having a genetically modified cold virus injected into your brain. I’ve chosen to do both of those things– and they both made me sick.
So how d’ya like this: When you’re Cancerful, you choose to be sick, in order to not be sick.
That seems like it doesn’t make any sense at all.
But for some reason, it does.
And even if it doesn’t, you get used to it.
Like I said, you get used to a lot of really weird shit when you’re playing this Cancerful game. (Heck, you even get used to the idea of dying. How about that!)
But I guess getting used to things is the same as learning to live with them. Which isn’t quite as good as “enjoying” them, but it’s a start. It’s living, after all.
So I guess I’m OK with being used to being sick.
PS: I’m now three weeks out from Brain Surgery #5, and doing well. Having an actual real summer this summer (in contrast to last year, when after Brain Surgery #4 I had a Total Lack of A Summer).
So that’s good. Great, in fact.
Do I feel sick today? Well of course I do, I’m Cancerful!
THIS GUY, that’s who!
So yeah, it was a bit of a bumer missing breakfast the other day, but since then I have not only had my FIFTH SUCCESSFUL BRAIN SURGERY — I’ve also eaten CAKE for breakfast every single day since then.
So it seems fair to say this has been a pretty successful week, when all is said and done. Right?
Here’s a recap:
• TUESDAY morning: Brain Surgery for breakfast.
(Extremely graphic [picture fothcoming, I hope.)
I have asked for a photograph of the inside of my brains every time I’ve had brain surgery,, but still have not gotten one. This is in fact the only complaint I have about my neurosurgery team. (Which is definitely a good thing )
I did, however, get a picture of myself cooling my brain off with an icy Shasta Ginger Ale immediately post-op– this was the closest I got to eating something all day (And it was delicious):
• WEDNESDAY morning: Red velvet cake for breakfast!
I can eat cake! (And talk! And walk! And see! And remember things!)
Most importantly, I can eat cake. And I can do it so well, I figured I’d do it again the next day…
• Thursday Morning: : Chocolate Marshmallow Peanut Butter Cup cake for breakfast!
For those of yous who come from where I come from, what we have here is basically a super fancy Tastykake Kandy Kake. I’m not gonna say it’s better than the original, but it’s kinda even better than the original.
So there you have it! Fifth Successful brain surgery earns you two things:
- Cake for breakfast!
- 2 Less cancer in your brain!
Speaking of which, the surgery itself was extremely successful– I did wake up with a brish accent, but I don’t mind that so much. Better than when I woke up speaking Cantonese, in Hong Kong.
They were able to remove about 90% of the tumor cells that were in there– digging any deeper ould have potentially removed my ability to eat cake (at least) so they left a little bit of stuff left in there, to be safe. But But there’s always been a little stuffleft in there. For four years now. So I’m OK with that.
Because I can eat cake!
I will be doing some followup treatment after this to deal with the remaining tumor (and ccake) in my brain, but it shouldn’t be too big of a deal. And hey, I’ve always got brain surgery #6 to look forward to!
But before then, I think I’m gonna go down the shore, and eat some real breakfast: scrapple & eggs. Cake for breakfast is good and everything, but it’s a little sweet.
PS: All this talk (and photography) of heavy sugar consumption brings something to mind: when you get cancer, everybody and their mother tells you to avoid sugar, because “cancer eats sugar!” “and blah blah blah blah (they also tell you to smoke lots of weed & put tumeric in your coffee, so take it all with grain of salt. Or sugar, as it were.) But what I have actually learned to be the truth of the matter, is that while cancer cells do eat a lot of blood sugar, the only way you’d actually be able to affect them in this way would be to completely & utterly stop eating anything that contains any kind of sugar or carbohydrates, completely. So no fruit, bread, no vegetables, etc. Which isn’t the best idea.
In the very least, heavy sugar consumption isn’t good for anybody (Cancerful or not). But even if you are Cancerful, don’t be afraid of eating a piece of chocolate here and there, especially if you believe that chocolate is important for your survival (as I do).
It’s not going to kill you. Literally.
So that’s it for now! I’m going to finish my cake for breakfast, have a little piece of chocolate, and then I’ll be home-weet-home later this afternoon!
Thanks to everybody for the well wishes, and especially to the friends who brought me cake! I love you all.
( I just love the ones who brought cake a little bit more 😉 )
Did you ever just wake up on a random Tuesday morning, and think to yourself:
“You know what I’d REALLY like to do today?
What I’d REALLY like to do today is…
Have a nice, delicious breakfast!
Maybe some eggs, maybe some pancakes, maybe both… definitely some OJ and a really good cup of coffee.”
But then you think:
“Oh shit, I can’t do that, because I’m having brain surgery today and I can’t eat or drink ANYTHING! I can’t even have a damn glass of water!”
You’ve never had that happen to you on a random Tuesday morning?
Well, I have. In fact, that exact thing just happened to me this morning!
So color me extremely disappointed that I’m not having a delicious breakfast this morning. Not even a damn glass of water!
But let’s look at the bright side– after my sad realization about no breakfast, my next thought was “Oooo I get to take a nice long nap this afternoon!” (A six hour nap, to be precise. Whilst mine brains are being sliced & diced like pork roll and scrambled eggs. [Aw man, I’m hungry! I want some pork roll and scrambled eggs!])
Oh well. I’ll have breakfast tomorrow.
So anyway, let’s get over this big breakfast shock and move onto the brain surgery thing…
So I’m having brain surgery. NUMBER FIVE! (yup.) Around noon. Today.
On an empty stomach. (What a pain in the ass!)
No, but actually, breakfast or no breakfast, I’m kind of excited about the brain surgery thing.
Primarily, because 5 brain surgeries is cooler than 4.
But also, because it’s an option. And that’s why I’m doing it: because I can!
That may sound kind of twisted (there has been some debate around here if maybe I’m just one of those weird people who’s addicted to self-mutilation–in my case in the form of craniotomies), but what I really mean by “I’m doing it because I can” is this:
I’ve (still) got some brain cancer up there in my brain, as I’ve had pretty much continually for just over 4 years now, and it has grown a teeeeeeny little bit over the last six months or so. It’s growing really slowly, which is really unusual for glioblastoma. So that’s good.
But because it’s still there, and because it still is entirely within a part of brain that you can pretty much entirely remove without messing anything up, the thought is this:
“Hey, why not skip breakfast and just have brain surgery today, and get that fuckin’ thing out of there so we don’t have to look at it anymore??”
So that’s pretty much what’s going on.
It’s good that this thing has only been growing extremely slowly. And it’s very good that it hasn’t grown (or leapt) into any other parts of my brain– because there are MANY parts of your brain that you can NOT remove without seriously messing things up.
So while my little brain chance is still… let’s call it “slow and accessible,” we just decided last night to skip breakfast and have a go at it, while the going is good.
Speaking of going when the going is good, I just got back from some VERY good going!
Yesterday morning, I woke up in Montreal. (I had breakfast there.) The morning before that I woke up in France. (Also had breakfast.)
A couple mornings before that I woke up in England, before that Holland, and Spain, and… you get the point. LOTS of delicious breakfasts (mostly muesli, in fact.)
So I was on a trip! For a couple of weeks. Visiting some very lovely friends, in some very lovely places.
And it was wonderful. And I’m sure glad I went, when the going was good!
And I’m happy to be home, and since this is where I usually have all my brain surgeries (except for that one in Hong Kong), I figure what the hell, how ’bout another! Less than 24 hours after I arrived!
And in case you’re worried– don’t be. I’m quite sure that the going will still be good later this afternoon, after I wake up from my fifth brain surgery. And shortly after that, I hope to eat some muesli. Or pork roll. Or both.
PS: No, I’m not jogging to the hospital this time, wise ass. On an empty stomach? No way!