Sep 272004

galiano bw.jpg

Do you know me?
Many people don’t. That’s why I carry the American Excess card.

Err… well, anyway…
It seems that the extra 30 pounds I have put on in the last few months, coupled with the lack of hair, eyebrows and eye lashes all add up to a confusing visual image for a few folks.
Today I had 2 different people, both of whom I have known for years in a casual kind of way, not recognize me.
I think that means I look different.
What do you think? You think I look different?

I am hoping that I have now turned the corner on feeling crappy from this last treatment.
This round has been brutal.
I *think* I am starting to rebound, but I can tell that rebound means something really different than it did a couple of months ago.
Mostly, without wanting to whine too much, I feel like I have been dipped in a light coating of wax every day for the last few months. Each layer is sort of insignificant on its own, but its cumulative effect is a bit much. And taken as a whole, the overall effect is that my entire sense of touch is wonky.
I also feel like I have had the flu for about the last 4 months, which, of course, isn’t true… but I feel worn out and just so tired of feeling crappy.
But hey… 2 more treatments and then, fingers crossed, I will be done.
That’s the big hope.

The end of all this treatment is close enough that I start to pine for feeling regular and I find myself making little activity to-do lists in my head.
I have been wanting a particular tattoo and I need to get my ear re-pierced and I can’t do either of those things till I get my immune system back, so I toss that around in my head.
But most of all, I am just looking forward to feeling sort of regular again and acting regular and going to work and all that jazz.
I realize most people I know wouldn’t miss going to work, and may think I am nuts to miss it, but I think lots of people would miss going to work too.
I mean, if I had been at Club Med for the last few months, then maybe I wouldn’t miss work, but I think I probably would.

So, this will be a short and sweet entry.

Apparently, I look different.
I suspect I am going to be looking a whole lot of different ways for the next while. I am really looking forward to growing my hair back when I can, so that will look different.
I suspect I am actually not done putting weight on, since I seem to put on about 5-10 lbs per treatment and I have 2 treatments left.
I am really looking forward to getting my body and my immune system back on track and heading back to the gym just as soon as I can, probably in the New Year.
Also, I saw a stationary bike at a second hand store the other day and I the more I think about it, the more tempted I am to go buy it, though I have no idea how much it costs. But the thing is, I have tons of time on my hands, and I can’t use my gym membership now, and I imagine sitting in front of the tv and pedalling and sweating out some of these toxins.
Now, some days I wouldn’t have the strength for much, but other times I think it would be really good.

I guess I should go see how much money they want for it.

 Posted by at 9:18 pm
Sep 232004

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?
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.
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.

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?

 Posted by at 3:07 am
Sep 172004

I went and got poked again today. That would be the billionth time since we started this merry process a few months ago.
I actually tried to figure out how many times I have been poked or had blood drawn or had some fiendish goo poured into me in the last few months.
I was coming up with a fairly accurate estimate, and in the middle of my idle calculations, the nurse offered to put me in that drug trial to treat my anemia and said I would have to do bloodwork pretty much daily. I swear, at that moment, some internal support mechanism inside my brain collapsed and I just couldn’t maintain my light-hearted calculations any more.
But the bottom line is, I have been poked a lot.
I have a scar on a vein now. I find myself complaining about that a lot, which is sort of absurd since it doesn’t really hurt anymore and it isn’t that big.
I’m going to have to go thru all my notes from the training for my job and see if there is something I can do to pamper my veins for being so brave over the last few months.
If you are a medical type of person and know of something, do drop me a line.
Continue reading »

 Posted by at 2:18 am
Sep 152004

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.

 Posted by at 9:33 pm
Sep 042004


it’s the Labour Day weekend, in case anyone had forgotten that. It’s been quite a summer here for me, and not the one I had planned.
And now it seems to be coming to a close.
It was blazingly hot this summer, and there was much whining about that at chez moi.
Then, in that classic Vancouver style, it just flipped to late October rain one day and it mostly hasn’t stopped yet.
And that’s good because the province was so terribly day, but I confess I was hoping for some sort of middle-ground.

We are supposed to go camping in a few days and it would be nice to have the perfect combo of

– quiet
– sunshine
– fun
– food

and all the other bits that I am looking forward to.

I guess I’ll just have to wait and see what I get.

But back to my point, it’s been a really wild summer.
You all know that, I suppose.
It’s been a summer of being blown away by the stuff people will do to help.
And it’s been a summer of tremendous frustration as the number of things I can do becomes less and less and my boredom and frustration escalate.

I think it might be my weirdest summer ever.

I started out doing pretty well, feeling pretty well, having pretty good energy levels, and it’s been a bit of a downward spiral over the last month or so.
3 more treatments and no real reason to expect that I will have an easier time, physically, with those treatments than I have with the last 2.

And, at the same time, my test results have been really really good.
Yeah, I have spent a lot of time feeling like crap, but I knew I was going to spend a lot of time feeling like crap.
It’s just differrent when you are in it and you can’t change the channel or wait a couple of hours to feel like crap again.
So, yeah, I have spent a lot of time feeling lousy and lousier this summer, and still, the test results are the most important thing right now and that’s coming back just as good as anyone could hope.
And I think, ‘why the hell am I whining and complaining? I have been on e-mail lists with women who had so much more to complain about and they went thru hell and did their chemo and then had a recurrence really fast.

So, let’s talk about that, because I don’t think I have, and if I have, it’s been a while.

Ovarian cancer at this stage has a freaky high incidence of recurrence.
I was on an e-mail list with a huge number of women and I had to unsubscribe because it was just so terribly depressing how many of them only had a couple of months of being cancer-free before they had to start up with the chemo drugs again.
The original numbers from my oncologist were ” I have a 50/50 chance of still being cancer free in 5 years.”
Because the 5 year mark is the important line in the sand.
And if you run the numbers through various websites, the 50/50 number could be seen as being kind of generous. I have seen it go as low as 30/70.
And all that depends on a bunch of things, like type and stage of cancer and overall health and age and luck and all kinds of things.

And, the latest word from the oncologist is that, with the rapid decrease in my CA 125 scores and having those scores well within the range of a regular person, I am ‘in the group they consider most optimistically’.
I think it’s funny how I have adapted to the medical model and I just accept that that is the best he can say.
Can’t say as I blame him.

Anyway, all that stuff is pretty good news.
You may not see it that way, but basically, everything is chugging along in a good direction,

It is my profound hope that I just do these next few chemo treatments and do a ton of bloodwork for the next 5 years, but we just skip the whole recurrence thing.
When I start feeling like I was hit by a bus, I try to think about it as doing one really big, long hard thing and if I just keep plugging along, maybe I get to just wrap up the cancer thing and get on with my life again.
That’s what I am hoping.

And, I need to say another big thank you to Elaine for being so sweet and loving and for looking after two lives and for running her ass off trying to keep it all together for both of us.
I am a very lucky bastard.

And I am lucky to have the love and support of the folks who have been pulling for me.


 Posted by at 11:23 pm