Jun 102004


Finally, here is another picture from the headshaving event last Sunday.
It was pretty fun. I wasn’t really looking forward to shaving my head, but these guys came over and we just talked and did it and it was really good.

More Pictures from that day can be found here

So, thanks to my friends here who had their heads shaved.
I heard rumour of some friends in America shaving their heads as well.
Thanks, everyone.

 Posted by at 12:30 pm
Jun 092004

shave blog.jpg

Okay… I said this would be up a few days ago, and I didn’t get to it.
Bad Spike.
And, I still haven’t seen all the pictures from that day, because they got taken on 2 different cameras and even if both sets of pictures are in the same house, the house in which I live, it happens that one set of pictures is on my computer and another set is on the Little Woman’s computer and there actually hasn’t been a moment when we were both free when we could consolidate and cull and then have the definitive head shaving photographs.

But here at least is a bit of a glimpse of the day.
It’s a picture of me, yes… that’s me (after clippers but before razor) shaving Elaine’s armpit hair. She decided to shave her armpits, which have been growing strong since the years of her misspent youth.

The day itself was great.
See, I had started to slowly feel better over the day or two before and that meant I was feeling just slightly less helpless and maybe I had a few opinions about all this stuff that has happened over the last 6 weeks or so.
And so I sat around and cried.
Oh, right, did I mention I am going thru menopause on top of everything else? Basically that is nowhere near as rough as I thought it might be, but having excess emotion of any kind right now is a bit, well, excessive.
And sometimes it’s hard to figure what is a reasonable emotion and what might be some excessive hormonal ride.
Anyway, I wasn’t enthusiastic about it.
I was touched that my friends wanted to be so sweet, but I still was pretty well stuck in the vanity department and wasn’t at all happy about it.

My pals showed up and we chatted and we were all pretty normal, and then we got out the clippers.
There were 4 of us getting our heads shaved, and then there was Elaine losing her armpit hair. There were a few people who wanted to drop by and visit but the rule for the day was that anyone who came into the house had to lose some chunk of hair before they left.
We started at around 11 am and we finished up around 4:30 in the afternoon.
It takes awhile, especially when you shave with the little razor.
It was the most contact I had had with people, besides Elaine, since before chemo and it was really really a good thing.
If you had asked me on the Saturday if I could hang out with people for 5 hours, I would have said no, but it worked on Sunday.
It was really nice to hang, and be supported and just talk about regular life and Harry Potter trivia and the new movie and who each of our friends who be in the Harry Potter series.
It was really fun and really sweet.
And I think it’s the sort of thing this group of people will be fondly remembering 15 years from now.
I have a really great bunch of friends.

I am really hoping that sometime today I can get the rest of the photos and go thru them and post them to the gallery pages.
I’ll let folks know when I get that done.

 Posted by at 9:58 am
Jun 072004

It’s been a whole week since my first chemo treatment, (and, I am happy to say, two whole weeks till my next treatment) and I seem to have made it thru the roughest part of the ride. For this round of treatment.

The last week has been really strange and unpredictable for me.
I feel like a whole lot of my energy went into wondering what might happen next. There were days when I would alternate between feeling fine and feeling bad every half hour. And then, as the week progressed, I felt worse and worse, until finally it broke and I started to feel fairly human yesterday.
So, that’s been kind of strange.

I spent a lot of time medicating myself, either with some sort of pain killer so I could feel a bit better, or with some sort of anti-nausea medication, or, more often, a combination. I would then try to make a mental note of what helped and what didn’t.

Yesterday, Sunday, was the first time I felt okay in a week.
And really, in the greater scheme of things, a week isn’t very long to feel sick. A bad flu can take you down for longer than that. And it’s easier now that I know I won’t feel *that* bad every day for the next 6 months, because I wasn’t really sure about that for a while.

Also, yesterday, a few friends came over and we shaved our heads and stuff.
It was really good.
But you are going to have to wait till tomorrow to hear the rest of those details, because it’s late and I had a big day (and I even left the house!)

In the meantime, if you are missing the old, wild,
high-flying Spike, go here.

More later.

 Posted by at 11:45 pm
Jun 072004

Yesterday, Spike got hungry. And ate.

Now, maybe it seems like a pretty simple thing to all you guys, but what with the surgery, the chemo, and all the other stuff, Spike ain’t been eating much, or feeling like eating at all. I’d been contenting myself with small triumphs — a wee bowl of cream of wheat here, a smashed (organic, pesticide-free) fruit smoothie there…

I never really understood how very, very worried I’ve been this week… until I saw Spike toddle into the kitchen and say “And a salad! Let’s make a salad to go with that roasted (free-range organic) chicken and potatoes! Yum.” (after she’d already had breakfast, snacks, and a cup of miso soup earlier) and I felt this tension release inside me like a rubber band snapping.

I hadn’t realized that I’d been kinda holding my breath…


 Posted by at 12:41 pm
Jun 042004

Well, here it is Friday and I thought I should let people know what’s up.
Mostly there isn’t a whole lot to say except chemotherapy totally sucks.
It’s like having the worst hangover of your life for 5 days straight. Actually, that doesn’t really do it justice and besides, I have no idea how many days it will suck for. But so far I can’t recommend it as any kind of party drug.

Monday I had my mega-dose of chemo and Monday night wasn’t too bad.
Tuesday was kind of okay but I was starting to go on a bit of a slide.
Wednesday I came off the steriods that they give me to make me feel okay and I started to crash quite a bit.
Yesterday, Thursday, was rough. Today I feel like I am starting to climb out of the great big pit of feeling lousy.

I do have to say that people have been totally fabulous to me and to Elaine and I sit and cry about that at least 3 times a day.
You are all fuckers for making me cry.
Fucking fuckers.
And thanks.
Everything that everyone is doing and all the support being are giving us really make a huge difference and I have been blown away by how many people have just jumped in and helped. Shit, there are people being sweet to us that I have never met.

Anyway… it’s been a week.
I am hopeful that I am starting to slide up into a higher level of feeling better. It’s all uncharted waters right now, but I am feeling better today than I did yesterday, and I am happy about that.

I know it’s going to be a long, hard ride.
It matters a lot that people are being so kind. It matters a lot that people are doing what they can to help.

Sunday I get my head shaved and a few friends are coming by to shed their butchly and/or manly locks as well.
See, *that’s* support.

Anyway, the Little Woman is gonna feed me some grub here soon, so I am gonna wander.

Lots of people have e-mailed and I haven’t had time to answer everyone. Sorry about that. I am doing what I can, when I can, and I seem to be falling behind.
I do like hearing from folks, so please stay in touch.

 Posted by at 6:11 pm
Jun 032004

This is a very interesting link, detailing some pre-human-trial breakthroughs they’re coming up with, as a treatment for cancer.


Although the media bombards us daily with screaming headlines of bad news until we’re all sure the world is going to hell in a handbasket, it’s good to be reminded about one of the categories of stuff that doesn’t sell newspapers — the amazing things we gain through science.

Frankenstein’s monster bedamned — I’m all for knowledge.


 Posted by at 1:07 pm
Jun 022004

It’s a bit insane for me to be sitting here posting to the blog again today, but it seems kind of important to me, otherwise I would be laying down sleeping or reading or something.

I wanted to share a thing that happened today, and maybe I’m still trying to digest it.

See, we went to see my GP today. She’s been off on holidays for the last 6 weeks and so when I last saw her, we knew I had a tumour but that was all. The strong belief was that it was endometriosis, it really did seem way more likely. And we knew I had to talk to a groin ecologist but no appointment had been made.
A lot has happened since that time.
Now, the thing you need to understand is, I really like my GP. She is a really nice, sincere woman. I have always felt like she listened to me and cared how I was and she has never treated me like some goofy stupid patient.
And, I have dealt with a lot of medical staff in the last 6 weeks and they have all been pretty decent, but it’s nice to just have an easy, long standing communication with someone.
So, me and Elaine are sitting at the doctor’s office and my GP comes and gets us so we can catch up on what’s what. And as we walked down the hallway to her office, I just started to cry cuz it became really clear how much stuff has happened to me in the last 6 weeks and it hasn’t really slowed down, and I just had a little sob in the hallway of the doctor’s office, which, if you don’t know me, is about as likely as pigs flying.
But that wasn’t what I wanted to tell you about.
It’s actually even freakier than that.

We were sitting there and Pat, my doctor, was looking thru my file and we were asking her questions and stuff and it was pretty good. And I don’t recall exactly how we got there, but she looked down at my file and she said that the original tumour, the thing that started it all, the one that showed up on the ultrasound, she said it was benign.
So, it seems they cut me open for a benign tumour and fell upon a whole whack of badness in other places.
And there is something about that that I find just so completely freaky.
As Elaine said, it’s sort of like someone tripping you in a crosswalk and they inadvertently knock you out of the way of a bus that was about to cream your sorry ass.
See, I just don’t know how to process that piece of information. Because really, if it hadn’t been for the benign tumour, I would still be walking around with a pelvis full of cancer.
It’s pretty strange to process.
And as we sat there, all more than a little bit stunned, Pat looked at me and said, “so, what I am saying here, Spike, is that your partner saved your life”
and then we got a bit weepy again.

You know, I know Elaine is spectacular and I know it better than anyone else knows it. I get kind of bored with how lots of people think they know how spectacular she is, when really they don’t. They see some little snippet of who she is and they put her on a little pedestal and I roll my eyes a fairly huge amount because I think that stuff is a bit ridiculous. (I can say these things because I have cancer.)
But I have always known she is incredible.
And I am still trying to wade through the enormity of her really quite literally saving my life.
I guess I gotta get busy getting better so I can try to pay her back.

 Posted by at 11:49 pm
Jun 022004

A bunch of stuff has happened and I haven’t really had the time or the energy to post anything here, so I will try to fix that now.

First, a wee report on the joys of chemotherapy.

Well, it just pretty much sucks, really, but as a woman I have been talking to pointed out, it beats the alternative.

We got to the BCCA and they took me to the room where I would get my treatment. It’s basically a regular hospital room, like on a ward.
When I had had an initial meeting a few weeks ago with one of the nurses who is overseeing the research project , she said that they usually set it up so you have a room to yourself for your first treatment.
So, I was a bit stunned to walk into the room and see two other people with IV bags in their arms.
And I froze, like a dog not wanting to get into/out of the car.
Whoa… hold it right there… This isn’t okay… I am the private room freak, whatever the expense. But it didn’t work that way. It was a bit weird at first but then I ended up having other things on my mind.

It is kind of funny when they set you up for your chemo treatment because they make you spell your first and last name for them and rattle off a bunch of other personal information, sort of like when the pharmacist confirms your address when they give you your prescription.
But it was funny when the nurse wanted me to confirm all that because Elaine started making jokes about people sneaking in and impersonating other people to get a few extra chemo treatments.
I mean, you’d only have to be there for a few minutes to realize that these chemo drugs aren’t the target of a lot of drug seeking behaviours.

Other people in my room had their treatments in shorter periods of time than me, so quite a few people came and went while we sat there. We arrived at 11 am and went home around 5:30 or so.
At one point, I had a medium sized reaction to the drug and they had to stop the IV and give me some Gravol because I was getting pretty sweaty and feeling pretty grim. Luckily Elaine came to my rescue when she saw I was starting to wander off in a wrong direction.

It is very strange to have so much fluid draining into your body over that period of time. At a certain point I could feel the skin in my elbow had gone cold from the cold liquid pumping into my system. They cover my arm up with a little heating pad to make that less drastic, but sometimes it gets annoying to only have one hand.
At some points, my vein went into spasm from the drugs and that hurt quite a bit. I don’t know if there is anything that can be done about that. I did remark that I am much more fond of the morphine drip, and that the morphine doesn’t hurt going in, not one bit. This comment did not secure me a bag of morphine, sad but true.

And that was Monday and today is Wednesday, and the fact of the matter is that the killing spree continues inside my body today and I have no idea how I will feel in a half hour. Sometimes I feel really good and sometimes I just feel like crap. And it really does seem to change really quickly. That makes it kind of hard to plan, and I know people have been wanting to check in and stuff, and I wish I could lay something out with a more solid chunk of information, but right now, everything changes in a heartbeat.
Sometimes I feel pretty dizzy, and then it gets better.
My voice has gone kind of weird and a bit higher pitched.
My ability to form a sentence or express an idea is sort of wobbly too.
My bones ache some times, and sometimes they are fine.
The nurses and doctors say that I should expect to be constipated and also expect to have the green apple quick-step.
It’s sort of a collision course inside my body right now.
I am trying to frame it in a Harry Potter versus Voldemort kind of way but sometimes I come up with other analogies.

We have had to implement the Reverse Quarantine act at chez nous.
Have I already mentioned all this? The stuff about don’t come over if you are sick, have been around someone who is sick, or if you are just recovering from being sick.
Also, to reduce the numbers of germies and stuff coming in our home, we are asking folks to wash their hands when they come into the house, just to help lessen the number of little critters coming our way.
I realize it seems like a bit much but it really is important. the bottom line is, I basically have next to no immune system, and if I get exposed to something, I don’t have many little soldier blood cells to fight it off because they are being beaten to bits by the chemo drugs. If I *do* get sick, they may have to delay a chemo treatment, and much as I don’t enjoy it, if the treatments get delayed, it gives the cancer more time to take root again, and we don’t want that.
So it’s a totally weird and difficult process but I need to do it and I need to do it the way they have it set up.

So now it’s been about 48 hours since the first treatment and I am just trying to figure out what I can and can’t do. It’s sort of strange to be so vigilant about everything my body is doing. I am also taking a lot of gravol, and I have been taking some steroids because they help make me feel better (though they also mean I can’t sleep). I’ve been taking some anti-nausea pills and basically I have been eating as much as regular and maybe more.
One thing I have noticed is the chemo drugs are making my body sweat out some rather vulgar smells. Elaine says she can’t smell it, but I am constantly trying to figure out where the bad smell is coming from, and then I realize it’s me. That pretty much sucks. I have no idea whether it will taper off in a week or if I am going to stink for 6 months.
I’m hoping that this 3 week chemo cycle will work out so I don’t feel too bad in the week before the next treatment because my body has started building up new blood cells and all.
It’s all a huge unknown to me right now, and that is sometimes more stressful that the stuff that is actually happening in my body.

Oh, and I still have my hair, but it’s getting shaved off on Saturday.
I don’t want to deal with the ongoing horror of looking down and seeing it, so off it comes.
I confess, I am vain enough that I resent the lack of choice with the bald thing, but it’s the better one of my choices. I suspect my little glittering skull will be covered most of the time, but I still find it weird that I will be announcing ‘my illness’ to the world every time I am around someone.
Oh well… what are you gonna do, eh?

I’m sure that there is plenty more to tell, but I think I have run out of steam for this particular entry.

More as it happens, comrades.

 Posted by at 5:19 pm
Jun 012004

Well, I had my first good old chemo appt today.

There’s a lot I could say about it.
I don’t even know where to start.

It’s pretty late and they told me I might have trouble sleeping tonight because of one of the drugs they gave me.

Here is one of the things that has happened to me over the last month that is really annoying to me… I’ve become one of those people who has this drug to suppress one problem, but I have to take this other drug to off-set the side effects of drug #1.
I think I am going to have to celebrate with a week at Detox when this is all over.
So, tonight I am pumped up on steroids that mask how lousy I really feel and then there is some gravol on top of that, which masks some other aspect of how I really feel. And then there is a medication that deals with any potential allergic reaction, which is making me drowsy and slamming into the steroid that is keeping me awake. I told Elaine I am having myself a chemo speedball. I think the original formula is a better product from a marketing angle.

I found out how good a job the gravol does when I sort of slid down in the feeling good department and started to get a bit sweaty during the chemo.
Elaine was chatting with the nurse pretty quick and she slid me a flap of Gravol and I perked up instantly.

Anyway, my day in chemo…

It wasn’t what I imagined, but it was okay.
My hair hasn’t fallen out yet, in case anyone was thinking it might work that fast, but I expect the big head shaving will happen sometime this weekend, depending on how I feel. (The standard hair loss pattern is that it starts to go sometime within 2 weeks and I don’t want to look like a moulting bird.)
Fellow head-shavers are more than welcome to let me know what day works better for them. (A couple of folks have said they will shave their heads in solidarity, which I think is so incredibly sweet, I don’t have words for it.)

I think I will wrap this up now and fill in some detail sometime soon.
I know that there are people out there who are wondering how it all went.
And my answer is, it was hard and unpleasant and kind of awful at a couple of points, but it okay too. I knew it was going to be hard, and it was.
Right now, I feel like I just made it to the top of that first hill on the roller coaster at the PNE…. and now we have to hang on for the ride.

 Posted by at 3:44 am