Something Evil This Way Comes

My girlfriend deserves a great big medal.
Have I said that before?

I hope so, but there is the whoppingly good chance that I have spent all my time going ‘ga-blah, ga-blah, ga-blah, poor little Spike, poor Spike…’ and not mentioning how she loves me and pats me on the head even when I am a cranky ass bastard and I am so sick of being sick.
Which is pretty much how I have been the last couple of days. And it also follows the course that has been established by the whole chemo scheme since we started this exercise.

In case you missed it in one of my previous posts, at about this point in the process, right now, about a week after the treatment, is when I start to come pretty unhinged.
Cole’s notes for those joining the story late…
they give me a whap of drugs, mostly steroids and shit, so I can function better and do at least some basic life things.
Now is when I am either off or tapering off most of those drugs, so I am detoxing at the same time I am feeling all the lousy feelings inside my body.
It sucks.
How many times have I written that in the last few months?
Shit.
If you want to know how I feel, think of it like this…
You know in elementary school and you learned that at this time of year the jolly Quebecois people put on their little snow shoes and go out and tap into their trees and extract the yummy sirop de ?rable? And you know how the sirop de ?rable is yummy and tasty and good for you?
Well, not to be too dark about it, kids, but I feel like if they took that same spigot and rammed it in my arm (and don’t think they haven’t been at labs all over my fair town) it would be the anti-thesis of yummy goodness that would pour into the pail. It would be the opposite of organic.
And hey, that’s actually okay. It’s there, it did its job and now it’s time for me to get it out of my body, one way or the other (thank you, great big bottles of distilled water.)
But it is not all that different than those scenes in Alien when it makes its way out, and I am just about as happy as any of the crew members when they realize they aren’t travelling solo.
Ga-blah ga-blah poor me.

Anyway, you, gentle reader, have probably been spared a whole lot of the detail because, really, who can understand what it really is unless you are in it. And if you were in it, why would you want to read about it?

I know, you think, “look at how long this gawd awful post is, how could I possibly have been spared anything?”
Well, tonight, I ain’t sparing you much. I need to vent some and if you came here to see what’s up, I am gonna give you the full meal deal tonight.
Well, actually, even this is abridged but you are getting more of what the locals enjoy than what I serve up here normally. You lucky bastard.

Tonight I was laying in my bed, trying to sleep, succeeding at that for a few minutes and then waking up again.
I gotta tell you, I am kind of cranky these days.
Not at anyone in particular, except say, Gordon Campbell and all the healthcare budget cutting bastards of the world.
On a human level, I have been spectacularly lucky and try to be grateful, even when I am crabby.
But I feel a little rant coming on, so if you are having a sad day and you thought you’d look here for some sunny encouragement, well, first you are terribly misguided, but secondly, you should hop on over somewhere else.
Here is a short list of stuff that is pissing me off.
Bear in mind that I know that in a big picture kind of way, I have sweet fuck all to be pissed off about. I have lots of people who love me and care for me and do what they can to make it better.
And still, I find myself pissed off…
Go figure.

And here, in no particular order, is a short list of some of the stuff I am pissed off about right this second.
If you pass me on the street in two days, don’t think you need to check in with me about any of it, because mostly I just need to blow off steam *or* it’s a big and complicated thing that I probably don’t even want to talk about and I wouldn’t if I wasn’t so full of fucking chemicals.

I am so pissed off about time.
I am pissed off that before I got sick, I had such big plans in my head about what a great summer this was going to be. I planted my sure-to-be-bumper-crop of tomatoes and the rats ate every single one of them.
Oh, yeah, my punk-mod-goth friends think I am kidding, but no, I am not. My totally loved to death, organic to the max tomatoes… not one did I get.
Which is not to say that I haven’t eaten my fair share of tomatoes this summer, but one thing I like about summer is eating the tomatoes that *I* grew… not someone else.
So, I am pissed about that.
And that’s about thinking things will go a certain way and then they don’t.
And guess what? That’s life, buckeroo.

One thing that has been pissing me off for quite some time, but I have been too kind to say anything, is goths and stoopid fuckers who think Jim Morrison is cool.
Okay, this is your last chance to jump ship before I really hurt your feelings, because maybe you don’t know how easily I can do that.

Gone yet?
Okay, here’s the thing…
as someone who has put an enormous amount of energy into just putting one foot in front of the other and making it thru each fucking ‘today’ with the fervent hope that ‘tomorrow’ pans out to be better, watching a bunch of teenagers and overblown teenagers worship some doped up, nihilistic satanistic talentless middle class jackass misogynist just makes me want to puke.
There is absolutely nothing brave or courageous or artistic about deluded, straight, white middle class men self destructing.
Nothing.
There is nothing cool about it.
It does not require one single spec of bravery.
If you want to do something brave, do something that will both a) make the world a better place and b) challenge and scare you to try to accomplish it.
Getting famous for getting high doesn’t qualify.

If you want to do something cool or brave, then sit down and figure out what you want for your life and then… go do it.
And I really don’t give a red rat’s ass, assuming it doesn’t involve doing awful things to children or any other innocents, just go fucking do it.
Bungee jump, get your ear pierced at the equator, fall in love with someone and stick with it. Go to therapy, don’t go to therapy… pay your library fines.
Do something even if it scares you. Actually, do it specifically because it scares you.
If you want to do something supremely brave, go be a good parent to your kids.
Love your kids, be good parents and good examples and make sure they know you love them.
That’s brave.

But don’t sit around thinking that some morbid overgrown ooo-ga boo-ga mumbling from the dark side dude is where it’s at.
Because frankly, that’s for shit, in my opinion.
You wanna be here, then be here.
You don’t wanna be here, then figure out what you need to change you can maybe actually want to be here.
I am actually not saying that everyone in the world has such a ducky little life that they are obliged in some way to see it thru from beginning to end in whatever way the great cosmos stamped on your ear the day your momma spatted you out onto the linoleum floor.
I do believe that if you are sitting somewhere reading on your iMac while you sip a Latte Chai espresso, then maybe you have a bit more wiggle room about what can and can’t happen in your life and you maybe should think about what you want and try to go get it.
Just a thought.

Another thing that pisses me off and makes me nuts is feeling like being sick is a sand paper I have brought to my relationship with my g-f.
Now, like I said, I have no complaints about how super swell she has been.

They have those made for tv movies that explain what it’s like to be madlessly and hopelessly in love with someone and still fight that demon on your shoulder that says, “You know, if you two had never taken up with the dating, she’d be so much happier now… holy! She could get her work done and she wouldn’t have become a sharp-shooter with a pill splitter and she wouldn’t have impoverished herself and I think she’d get out more and I think she’d be happier.
Golly, I sure wish there was something I could do to pay her back for all this, but I have no idea if I can. I hope I get to get my strength back and take her to the beach for a couple of days and just relax and exhale… I hope it works out that way.”

And I am sure hoping it works out that we can get away, just us two, and relax and appreciate each other and everything we have been through.
Because she has made all the difference in the world. People have been really good and really kind, and my gf has been better than anyone.
So, if you all could give her a little hug, or a little non-contaminating smooch (assuming she agrees,) or a little e-mail greeting saying thanks for being swell to Spike, that would be great.
I think we are both getting a bit weary from it all these days and I am not sure she is getting enough support from folks out there.

And another thing that pisses me off these days is this bad rut I am in.
See… I am not feeling great, so I can’t do much.
It means if you ask me if I can do something with you, I really can’t tell till the day it’s supposed to happen and even then, I could get 30 minutes into something and realize I am in over my head and have to jam.
So, I am hard to make plans with.
Which means I spend a lot of time wandering around my house, wishing I could do something, wishing I could go bug my gf but she needs to work and make money and stuff and even see other people besides me sometimes.
And I wish I could sit and read, but the drugs mess with my vision for at least half the time of each cycle, so that’s not good.
And then there are videos and movies and shit, but it’s nicer to watch those with someone. And that gets to be a bit difficult to co-ordinate because, unlike me, regular people have jobs and lives and things to do.
And, inside all those regular people, there have been a handful of folks who have really been wonderfully attentive and engaging, and have made a point of taking me to appts and just running errands or even going for drives up the Sea to Sky Highway or camping or doing anything to break the monotony.
I can’t thank you guys enough.

The boredom has been one of the hardest things to wrestle with.
Sometimes just a wee field trip with no pressure has been so important for me.
And if after reading this, you are brave enough to think you might wanna come over and watch a movie, or maybe you wanna help me go search for firewood for my long, indoor, rainy winter, then drop me an e-mail or give me a call.
I know people have been trying to let us have our space to just be doing whatever we need to be doing, and also that folks have a life and families and jobs and all. But if you feel like it, it’s cool to ask and see what either of us is capable of.

E-mail is good too. I know I don’t always answer as fast as I should, especially if it arrives when I am really drugged or sleep deprived. But I do want people to know that I appreciate their e-mails, even if I don’t always respond.

And another thing I hate, in case anyone is still reading, is the fucking neuropathy in my arms and my legs.
At first, during the first chemo cycle, I couldn’t really bear weight on my legs very well, they were that unreliable.
Now, with the new, stronger, more all-encompassing drug regime I am doing, I can more or less walk around most of the time, though I do get a bit topply sometimes. Basically, I have needles and pins in my arms and my legs to some degree for the entirety of each 3 week cycle. It didn’t used to last so long, and the oncologist says it will almost certainly go away within 3 to 6 months after the end of the chemo, but maybe not.
But I tell ya, I feel like I am living my life in opera gloves.
At least I can be stylish in my illness.

And, along that theme…
Vanity of vanities, all is vanity
what about my fucking hair, eh?

When we first met with the oncologist, he wrote me a script for a wig and I smugly told him that I didn’t think there would be any need for one. And, I haven’t bought a wig.
But I certainly thought the bald thing would be way easier to deal with than it has been.
Luckily, some SF pals sent me a shit load of cool bandanas and that saved my baldheaded bacon, because I have simulataneously lost almost every single baseball hat I own, right as the autumn monsoon descends.
And I don’t like being bald and I don’t like being cold… so losing that stuff right now kind of sucks.
Anyway, unlike me, I digress…

I thought being a big old bad ass dyke, I would be ever so fine with the bald thing. Hell, I’d even considered doing it all on my own at various times in my life, how hard could it be?
And then, when bunches of my friends shaved their heads in solidarity, why, I thought I had been such a big baby and what was the problem.
Well, the problem is… maybe you should lean in cuz I am gonna have to whisper this.
I don’t want just anyone to know.
It’s a bit of a secret.

Okay…are you all scootched up close now?
Okay… here’s the problem.

It’s been said, and there may be some truth to it, that I am a bit of a control freak.
I would argue some of the details of that assessment, and I have certainly had my pot-kettle-black moments in those conversations, but the point stands.
I wish I had $10,000 for every time I have thought, “okay, I am ready to have my hair grow back now’, only to realize it’s not that simple.
See, cuz right now, I am not a regular person.
I confess, I woke up a couple of weeks ago, walked into the bathroom, looked in the mirror as I started to brush my teetn and I was surprised to find that I was still bald.
I don’t know why.
Maybe I had had a particularly hirsute dream in the night. I dunno.
Mostly what I hate, aside from how it symbolizes the lack of choice in my life right now, is that it announces me as a ‘sick person’ before I have even had a conversation with someone.
I guess being so dykey and cool that may not always be true because I bumped into an equally dykey and equally cool co-worker the other day who asked why I hadn’t been around work.
“Oh… I am doing chemo for some cancer,” says I.
She was aghast, in the sweetest possible way.
And here I thought my (straight boy) co-workers were gossip mongers.
What’s up boys?

My my… I do go on, don’t I?
I don’t post squat for weeks on end and then it all comes flying out like some Linda Blair roman shower. (go ahead, Google that, Jibsy.)

So, I miss my hair, more than I ever expected.
I am more vain than I ever knew, and I always knew I was super faggy vain.
I think my gf is almost a saint, and you may think so too but you probably really have no idea and that’s okay. Just believe me.

I’ve learned things being sick and I hope I don’t forget them soon.

I’ve learned most of all that you better figure out what you want and try to go get it, assuming it isn’t going to cause harm anywhere else to anyone else.

I’m still trying to grasp the fact that all those little moments are connected and they add up until one day you are sitting at your computer at 3 am thinking about the stupid little kid who couldn’t understand why the park ranger wouldn’t go retrieve her sandals from the bottom of the outhouse so many years ago.
I hope that man is enjoying his pension today.

So…
2 more treatments.
If you have been playing along at home since the beginning, you may have seen the pattern start to emerge here.
I’ll be crappy and feel like shit for a few more days and then I will try to post something again when I feel better.
By the time I go for the next treatment, I will have convinced myself that it won’t *really* get this bad. Even when it’s pretty hard to forget how totally crappy the crappy days are.
I’ll do the chemo and those 2 days will be druggy and weird, but not completely awful.
And then I will slide into all this again, and just as I sink towards the bottom of the deep mirky sea, I will bonk my head and remember to go back up for air, and then I will start all over again.
And then we will do number 8.

And then we wait and see what happens.

And don’t think that doesn’t weigh on my mind.

Have I mentioned my gf is almost a saint?
Maybe she is a saint.

And if you read this far, I guess you might one day be almost a saint as well.
Or else you need a library card.

Any questions?

I bet you didn’t know that, did you?

I stumbled upon this site where you can find out what Google has to say about me or anyone else.

It’s kind of fun.
Go ahead, type in your own name.

Tomorrow is chemo day, number 6 of 8.
That means that I did bloodwork last week and again today.
Dr. Oncologist says that my CA 125 is at 4.7, which is still really, really good.
It’s up a smidge from last time, but he says that tiny little jump can be attributed to what time of day they took the blood.
Anyway, he continues to say that things are going really well, just as well as can be, and I will go along with that.

what else…

we went camping last weekend.

It was very, very, very wet and windy when we arrived on Friday.
Really, it was insanely windy and insanely rainy. Friday night was just basically insane.
Because the ferry arrived late and because the weather was so punishing, we set up our camp in the dark and in the rain.
We ate dinner at 11 pm, and then we started setting up the tents.
Friday night was kind of brutal.
And then we woke up Saturday morning, and it was sunny and lovely and it stayed that way thru Sunday.
And then we came home and it started to pour again, but that’s okay.
I had a great time getting out of town.
And, I am hoping to get out of town once or twice more in the next while, but I have to see what happens with me and my travelling companions and all that.

It’s late and I have to get my stuff put together to go for chemo tomorrow.
Wish me luck, comrades.
It’s a bugger of a process and I am getting more than a little tired of doing it and really really tired of not being able to do a whole lot of other things. But I think in a big picture kind of way, I have very little to complain about.

Okay… more when it happens and I simultaneously remember to post something here.

Over and out.

Well, it’s about 5 days since my last chemo treatment and I thought I should say something.

I was just whining at Elaine that this chunk of time, this chunk 4 to 7 days after the chemo, is the worst.
The chemo itself isn’t all that bad, aside from being poked.

But right now, I am:

– bored out of my mind
– drugged out of my mind
– incapable of communicating much so I can’t generate dialogue with most anyone
– really easily worn out, which feeds right back into why I am bored out of my mind.
– completely absent-minded because of the drugs which makes me not much fun for a conversation which feeds into the boredom.

So, this is my main time to lay around and feel sorry for myself.
Unfortunately, I am bored with that too.

The other thing that is happening right now is the neuropathy in my hands and fingers. That’s annoying, though it does fit well with the way my brain feels. It’s interesting to have everything feel pretty much the same. Numb.

And… I know that it is a stage in the process.
And….. I also know that this stage of feeling crappy is starting to take up more and more time of each round of chemo, just because my body is getting more worn now and each time the sludge inside me gets built up a bit more and I have less and less resistance to all the shite in my system.
And just about the time the new cells start to grow again, we slam another needle in my arm and start the process again.
And, in spite of the whining, that’s okay.
I don’t like this process much, but I am not keen on the alternative.
Still, I am pissed off that my lovely summer of leisure is over and I never really got the sort of leisure I was hoping for.
And, it’s all for the greater good.
I do believe that.
I am just achy and whiny and watching summer evaporate before my eyes and I am grumbly about that.

Next year.
Watch out…. next year, I am going to be hedonism personified!

You know, in a big picture kind of way, I mean if you are going to have cancer and do chemo, well, things have actually been going pretty well for me.
In terms of what the test results say, my body has responded well to the chemo.
The people in my life have been wildly kind and supportive.
Things could be way worse.
I just get grumpy about some of the details.

But in a big picture kind of way, it’s going well.

Well, once again I have fallen behind in my posting here.

But hey, I try to catch everyone up on every little thing that is fit for general human consumption in one fell swoop. Trying to make it worth your while. Ever the considerate one, that’s me.

Well, first of all, some friends in San Francisco sent me a bunch of cool bandanas to cover my shiny bald head. I asked Elaine to take some photos of me in the bandanas and now they are up on my gallery page.
You can find them here.

Also, Elaine and I had our photos taken by a lovely homer-sexual lad today. He is travelling around taking pictures of queer couples and he arranged to take some photos of us. We won’t see the photos for at least a couple of months but I do like his work.

Elaine’s van remains on the missing vehicles list. We got a rental car from ICBC, but it may be gone by the weekend.
Returned to the rental place, I mean. Not stolen.
Though lately, who knows…
Though it’s not a mid 80’s toyota, so the thieves will be less interested, I suspect.
Meanwhile, the battery on my truck is dead, because I have spent so very little time driving in the last 3 months that the battery just said ‘see ya later’ and kicked.
All that would be much more manageable if I wasn’t doing chemo again on Thursday. But that’s how it goes.
Bloodwork like crazy tomorrow, and chemo on Thursday.
I guess I better get that battery working and my g-f better learn to drive my truck.

This cycle is almost over and I am now past the mid-way point for this process.
It was weird because I was pretty enthusiastic about hitting the half way mark, but as soon as I did I became really tired of the whole invasive process, tired of being poked and prodded, tired of feeling crappy, just really extra tired and frustrated with it all.
And that’s a bit phuqued up. I mean it’s probably understandable and everything but basically, the bottom line is I need to cowboy up and just deal with it.
It hasn’t been a terribly lovely summer for me but I intend to make up for that as soon as I am feeling better and have my cash flow in better shape.

I’ve been feeling weird and frustrated and tired of being bald quite a bit lately.
And, you know, if one was going to have to pick a time to be bald, this summer is a pretty good choice, since it has been blisteringly hot.
The thing I find most exhausting and emotionally draining is the lack of choice that comes with so many angles of this.
And, actually, that’s not really accurate. It’s really a matter of being left to choose between really unpleasant option and really awful and agonizing option. It doesn’t seem like much of a choice, but ultimately it is.

Summer is coming to an end and I am still feeling a bit cabin-fevered. I can’t imagine what my mind will look like by December, but hopefully I will come up with some more creative ways to get out of the house.
I had a couple of adventures planned for the summer, but things seem to have fallen off the table and now you can feel fall creeping up and the days of romping in the sun coming to a close for this year.
We did bust out and drive up to Whistler for the day last weekend. That was fun.

Elaine and I are planning on going camping in a few weeks, and hopefully it will have rained enough in the meantime that we can have a campfire while we are away.
If you live in Vancouver and happen to have any camping equipment we can borrow, we would be temporarily in your debt.
Mostly what we need is a decent tent and maybe a camp stove. And maybe a tarp, if you have one.

Okay, then, amigos, it’s late and I have to go to bed so I can get up and get poked and all that.

Thanks for checking in.
Stay tuned for the next installment. It probably won’t take long.
Roger Dodger, over and out.

Okay, I uploaded a bunch of pictures from our last trip to Tofino. You can find ‘em here:

More Tofino Pictures

I need to move ‘em around so they are in the right and logical order, but I seem to have hit a wee snag and I need my g-f to help me figger it, but right now she is working on a website or two and I will get to that soon. Or not so soon.
But I know y’all want to see some old vacation photos of me with a full head of hair and luscious eyebrows.
So, knock yourselves out.

It was a really good trip, then we came home and everything got really crazy really fast. It sort of stands out in my mind as the transition point into all the shite that is currently happening.
So, look or don’t look.

In the meantime, hacking and slashing my way through the icky feelings and trying really hard to get to feeling kind of regular.
It seems to take a bit longer each cycle.
I think I am just about to feel normal-ish soon and I feel like the heat wave is part of why I feel so stinky lately.

And… hey… we are going to have a little yard sale next weekend.
So, if you’d like an invite, drop me a line and I will send it off to you.
All the details are TBA, except that it will be sometime next weekend, because that works for us.

Okay comrades, thanks for checking in with me and mine, and don’t forget the sunscreen.

I am in my post-chemo week and things are kind of confused in my head. Not in any sort of tragic way, but the smaller details get pretty muddled right now and I get spun around quite easily. Like, my original chemo treatment was on a Monday. Then it went to bloodwork on Monday and chemo on Tuesday. Now we have moved to bloodwork on Tuesday and chemo on Wednesday.
I don’t know why this minor shift has me so confused. I can handle it when it comes to dealing with how the garbage schedule changes but for some reason this last week or so has been really hard to keep track of.
So, if you have been expecting some sort of contact or confirmation from me over the last while, this could well be why you haven’t heard from me.
That, and we have been having just a few more troubles with the olde e-mail. Honest. But I reckon it’s all good now.
Oh, and then there was this thing where my hard drive kind of kicked up its heels, so lately I have been logging in thru web-mail, which is kind of a drag but better than nothing. But web mail is less convenient for answering people and stuff.
So, you see, I have a billion good reasons to have not been in touch.

I guess if you came by here you are wondering how it is all going, so I’ll touch on that now.

Physically, things are getting better in a variety of respects.
I’m still pretty happy that my test results are coming in with such good numbers and I am trying to keep that in perspective. It’s good and at the same time, I still have a ways to go, like about 5 and a half years, before anyone is going to pat me on the head and tell me I am cancer-free. But I am happy with how it is all going.

Once again we adjusted my meds and I am getting some sleep this time, and that makes such a huge difference. The fact that the temperature has dropped a bit is a huge help as well, because now I have a better chance of being able to stay awake thru the night.

Pride week has come and gone and it was a good thing, but it also took a chunk out of me. All in all, I am glad it happened and glad that we participated the way we did, but I confess, sometimes I feel like people look at me and see some tragic figure, and that gets kind of emotionally tiring for me.I *want* to be regular and be treated like a regular person, even though I know I am not very regular right now. It’s tricky. I realize I do require some special considerations now. I guess I am still struggling with the humility that requires. Never my area of strength.

I keep wrestling with this urge to get out of town for the day and spend some time with my sweetie, just hanging out somewhere green, or on the ocean or something. I know I am going to be cranky as hell when it starts to rain and I realize I missed the chance to spend a day in the woods all relaxed. Okay, really what I want is a whole chunk of time out of the city, but my current medical logistics and financial humiliation make that basically impossible, so what I am after is a good long day in the woods or at the beach. Is that so much to ask?

I am off to spend the day dealing with government employees who may or may not be decent to me, who knows?
I certainly don’t envy them, but on the other hand, I don’t envy me either, so it would be nice if they could just do the right thing and fork over some rent money.

Well, I need to go shower and then go plead my case.

Later, amigos.

It was only a couple of months ago, but hey…

I keep meaning to add the photos from our most recent trip to Tofino to the gallery page, but I always seem to be too busy having some sort of terrible hormonal episode or not sleeping.
In the meantime, here’s a wee bit of the trip.

Was I having a good hair day or what?

Hey folks…

just a quick note to say my e-mail has been down for a day or so. If you e-mailed me in the last 2 or 3 days, please resend it.
I never got it and it is lost in the ozone.

More later.

Spike