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.