Nov 262004

It’s two weeks since my last chemo.
I am all grumpy and achey and it’s rainy and wet and it gets dark at 11 in the morning lately.
I had blood work today. That was okay. I’ll find out what’s what sometime next week, when I see the oncologist and have a CT scan and a chest x-ray and all that jazz.
I am choked because I keep getting billions of spam entries thru the comments function of this page, and it can be an enormous amount of work to go through and delete it all. Yesterday I spent about an hour deleting the approximately 35 spam entries that had showed up in 24 hours.
I think there is a special layer of hell for spammers and an uber-special layer for spammers who spam a goddamn cancer blog. I mean, shit, give me a break.

On a happier note, some friends took me out to wrangle up a couple of truckloads of firewood yesterday. That was way cool. The same friends who came by and cut my crazy hedge down into a manageable shape.
So, now between that truckload of wood and the whack o’ wood that used to be another friends’ cherry tree, we have quite a bit. It’s all pretty wet so we will have to improvise, but hey… it’s nothing that can’t be solved with a Duraflame log and some creativity.

So, that’s the word from where I am… achey and grumpy and impatient to start feeling better.
But hey… it’s is getting better in small ways.
I just have to remember that.

 Posted by at 3:43 pm
Nov 242004

It’s been almost 2 weeks since I did my last chemo treatment and I am just starting to feel the beginnings of okay.
I still have the neuropathy in my hands and feet, and I have a deep ache in my bones and I feel kind of nauseated most of the time.
That’s just kind of how it goes now. And hopefully it won’t be how it goes in a month or so.
Of course, it’s the growing of the new, fresh, vibrant hair that is my big focus right now. My hair is coming back, slowly but surely. Not enough that you can see it yet, but it’s a soft fluffy covering on my head. Maybe soon it will have some colour.

What else…
Today a friend gave me a great big bottle of Noni juice.
“What is Noni juice?”, I hear you ask…
well… have a look
or just throw the word noni juice and cancer into your favorite search engine.
It’s all kind of interesting and I will see if it makes me feel any better.
I admit, I have so many weird things in my body right now, it would be hard to figure what may be making me feel better. And since my test results were pretty much unbeatable last time, I don’t expect a few blasts of noni juice to improve those scores.
Still, I’ll take it and see if it helps.

And as many of you know, we have switched our diet to being as organic as possible. I believe that organic produce has a better taste than non-organic.
If you don’t believe me, go out and buy yourself an organic mandarin orange.
You really have to taste this. They are completely amazing and loaded with flavour.

On other fronts, I am stunned at how very little daylight we get here in Van-groover lately. It’s really shocking.
Add to that a lot of wind and a lot of rain, and it’s a tough time of year.
It’s funny because I was thinking today about an Australian friend who is in Ireland and an Irish friend who is in Australia and I thought they should enjoy things where they are.
Though I suppose Ireland probably isn’t getting anymore daylight than us here.

But the dark days are almost at an end.
That’s what I hear and that’s what I believe.

 Posted by at 10:09 pm
Nov 222004

Well, we are home from our ovarian cancer symposium in Victoria this weekend.

It was all a bit of a whirlwind, by my standards. If things were a bit more normal, and I had a bit more than 8 days since my last chemo, then it maybe wouldn’t have felt quite so overwhelming.
And it wasn’t *terribly* overwhelming, it was just a bit of a stretch for me.
But it was interesting, and I am glad we went, and I am still thinking through some of the details of it.

In itself, the symposium was a day of covering a lot of information we already knew.
The thing I did find interesting was hearing about the new advances in immunotherapy that they are working on at the Deeley Centre in Victoria.
That is some interesting research. Basically what they do is extract some blood, separate out some of the t-cells, plump up the t-cells and help them multiply, and then pump them back into you so they can take a whack at the cancer/tumour.
See, apparently tumours have this sneaky way of tricking your t-cells into believing there really aren’t any tumours there and so the t-cells leave them alone. This research is sounding interesting and hopeful.

It was interesting to chat with the women we shared a table with. One woman had just started her chemo treatments and it was a strange flashback to think about how that felt not so long ago, and to think about the fact that I actually made it through my 8 treatments. I am still working through that detail.
We chatted with 2 other women who had both been cancer-free for a good long chunk and one of them is now getting medals in the Grouse Grind, so that was really good to hear!
It was also new territory for me to be sitting with someone else who has/had ovarian cancer. I mean, I know it’s a weird thing to say, but I have never met anyone else in the flesh who had it, so it was bizarre on some level to be able to sit and chat and have that be accessible.
The women who were there were really kind to me and I appreciated that.

And I came away thinking I may want to devote some energy to being some sort of queer resource for people with cancer.
I dunno yet.
Who knows what happens next.
But I felt like there are some issues that have come up for me around the cancer process and those things are different than many of the things that would have come up for lots of the women at the conference.
I knew that ages ago.
And being there in Victoria kind of drove the point home for me.
So, maybe I will become some sort of GBLT cancer resource. I dunno.
I am certainly open to talking to anyone about that.
I mean, on one hand, having cancer kind of cuts through the differences between people.
And on the other hand, the way we organize our lives is different.
This is my new idea. I am just not quite sure what to do with this big idea.

And now I see that it is very very late, so I will take my flannel-covered ass to bed and see what happens around all this in the future.

 Posted by at 2:18 am
Nov 172004

If you want to know what all this chemotherapy stuff is about, at least the way it happens with me, you can now take a guided tour.

I uploaded a few pictures to my gallery page, which you will find here:

Chemo gallery and stuff

For folks who haven’t taken the gallery stroll through the non-something-evil side of my site, do feel free. You can see my amazing friends shaving their heads with me and you can see the pics of the vacation that Elaine and I took to celebrate our birthdays last year, right before all this wildness kicked into full gear.
But just let me make it clear that while I sport many different looks on this page, I am actually *not* the guy with the baby in the gallery section called “Hey Baby!”
That would be someone else.
And while neither of us are currently sporting any ovaries, I still had some when I took his picture.
Just making sure y’all understood that.
I know I make it tricky for some people.

Also, we are tweaking the very front page, the splashy splash page, of my site, so stay tuned.

And.. a final comment for folks who know me and haven’t seen my somewhat swollen self lately… as you may have noticed, I have lost some hair and put on some weight.
The hair loss is fairly predictable and doesn’t seem to surprise anyone, except maybe me (yes, still…)
The weight gain seems to take people by surprise.
And hey, it is surprising for me too.
My oncologist says it is because I am eating more bland, carb-heavy food and not exercising as much as I used to.
I think it’s the steroids, myself, but I am not the one with the science degree and the white lab coat.
But I do know that I haven’t been drawn towards bland foods, no matter what anyone thinks. Man, I am so sick of bland and middle of the road, and ever dropping-dead taste buds that I am over-spicing, if anything.
Or, as my girlfriend said, “do you think you will like things at a more normal level of spiciness again once this is all over?”
Poor girl, I’ve been scorching her little pink ears off.

Anyway, the guerilla chic look is way more about the sudden and temporary weight gain than about any long repressed political agenda on my part.
Rest easy.

 Posted by at 5:35 pm
Nov 142004

people can e-mail stuff they would have left as a comment.

The address for that would be:

evilblog ‘at’

and, you know, take the word ‘at’ out and throw in the curly old @.

But you all knew that, didn’t you?
You know how much (more) spam I would get just by putting that address up there like that.

Anyway, there is a short-term solution.

And thanks.

 Posted by at 11:35 am
Nov 142004

Everyone — Don’t try to comment on posts here — the image-checking function just broke, and I’m looking into it.

It’s working again. Comment yer hearts out.


 Posted by at 11:11 am
Nov 122004

last chemo 2.bmp

As you know, today was my 8th and, we think, last chemo treatment.

I have a bunch of pictures from today and sometime in the next while I will sort through them and put them up, so people can get a sense of what happens, because I know I had no clue what would happen when I went for my first chemo.

In the meantime, while I sort through the stuff in my camera and the stuff in my head, here are two pictures to give a bit of an idea of how it goes.

The picture above is, well, it’s my arm. But I am betting you already figured that out. Those are just a couple of bags of drugs and shit that got put in me today. I had the IV in me from 8:30 am till 2:30 in the afternoon so lots of stuff went in my arm today.
If you haven’t done your part to bankrupt the healthcare system lately, you may be unaware that the wee needle in my hand is actually a sort of plastic tip. My understanding, and I don’t know for sure because I am always looking the other way, is that the plastic covers the normal stainless steel tip, and the put the two of them in ya, and once they are in, they pull the stainless steel one out so that you only have a light, bendy pokey thing in you. These things make a difference, especially after 6 hours.

last chemo 1.bmp

This picture is just to show you what happens when they pour all that dope in me.
Basically, I pass out pretty quick, because they start me off with Gravol and Benadryl and that combo would knock almost anyone on their ass.
This is me, listening to Metallica with the San Franciso Symphony Orchestra.
I have this morbid ritual of listening to that disc, partly because I really like it, and partly because it is a really good disc to listen to on headphones because of how intricate the orchestra stuff is, but a big piece of it is to be able to listen to the Metallica song, “Until It Sleeps” which James Hetfield wrote when one of his parents had cancer. (I don’t know which parent it was, I have heard conflicting stories.)
Everyone seems to have their weird chemo rituals and that is one of mine.

So, that’s 8 treatments.
I came home all stoked that I was finished. And then I sort of realized that I am not really finished. I still have the part where I feel like crap.
And I still have the blood work and the CT scan and the meeting with the doctor, all this month.
And I have to build up my immune system.
And I have to get my blood counts back in the normal range and get rid of the anemia.
And I have to grow my hair and eyebrows back.

And I have to start going to the gym again.
Going back to work would be a good thing too, sometime in the new year.
And do at least a few of the things I told myself I would do when I get better.
If I win that lottery, I will be able to do quite a few more… because I had a lot of time on my hands and came up with some grand and expensive things to do when I get better.
watch for me hang-gliding over you, any day now.

 Posted by at 10:53 pm
Nov 112004

Spike, in her gentlemanly way, failed to point out that I was all bright and cheerful in the doctor’s office, and I then made it *almost* out of the building before having a tremendous weeping fit, and soaking Spike’s shoulder rather thoroughly.

You see, the thing about cancer is that it can be slapped down, and still come back and bite you on the ass on the second round. And the thing about ovarian cancer is, it’s worse than many. The official statistics are something like a 25 – 30% survival rate, for those at Spike’s advanced stage. I don’t think I’ve taken a single breath free of terrible, choking fear since April.

But what the doctor and our chemo nurse were saying, in a completely gleeful way (really, I’ve never seen them so gleeful) was that the way Spike’s blood tests read was indicative of the very best they could hope for, giving clues that the cancer had been completely excised. The lower the CA-125 goes, the less chance that there’s sneaky cancer cells waiting to come back.

Normal healthy human CA-125 (stands for Cancer Antibody) range is 1 – 10 (never goes to zero, even in cancer-free people).

Spike started this journey at a CA-125 of 150, which dropped radically with surgery (to 60-ish), and then dropped another huge drop at the onset of chemo (to 8-ish)… then took little steps down to its current level of 2.2.

So. One more round of chemo. Spike gets her eyebrows back. And then we spend seven years peering ’round corners, waiting to see if the monster is gonna jump back out at us. But we’re starting from a really hopeful place. And, I’m not feeling quite so scared any more. But I sure am weepy…


 Posted by at 7:42 am
Nov 102004

Well, I do my last (fingers crossed) chemo on Friday.
Which means I had my visit with the oncologist and the clinical trials nurse today.
I confess, I have been stressing about it a bit lately.

So, Elaine and I went to the cancer agency and they took their standard 3 vials of blood, and then they took 4 more, bigger vials, because I agreed to be part of a study. In fact, I agreed to be part of a couple of studies and I am not even sure which study I gave the blood for today, but that’s okay. And it’s not even the end of it. I still have 4 more vials to add on to some other blood draw at some point in the future.

They took the blood and then we had an hour and a half before the meeting with the oncologist and the nurse so we hung out in the car and read.
I have started the Harry Potter series all over again and I can’t believe that J.K.Rowling isn’t going to have her 6th book out in time for Christmas but then, as a friend of mine pointed out, she doesn’t have to care about things like having her book out in time for all the Christmas shopping because everyone who was going to buy her book will buy it no matter when she gets it out.
Still, it would have been nice.
Anyway… we sat and read and then we went and met with the medical folks.

They weighed me and then I went back into the examination room and the nurse handed me a piece of paper that had the results of all my bloodwork since I started.
After a few moments of confusion on my part, she pointed out that this piece of paper had the history of my CA125 levels and that they are at all all-time low of 2.2 !!
I was stunned and started making little cheering sounds.
I asked the doctor if the reading would ever go to zero and he said no. He said that if they measured Elaine’s blood right then, it’s possible that her score could be higher than mine.
I asked if this meant that, at this moment in time, I am cancer-free, and he said yes.
He said a bunch of other things that I seem to be blacking out. I blame the chemo drugs for that. But I recall snippets like my ‘test results were brilliant’ and how he ‘couldn’t be happier’ and I think he had a ‘spectacular’ or a ‘super’ or a ‘stupendous’ in there somewhere but, like I say, I may be making that up.

And then we asked about the future.
First of all, I will still be doing the last chemo on Friday. Good test results didn’t get me off the hook for that.
And, he will be seeing me every three months for the next 2 years, and then every 6 months until I hit a 7 year anniversary of knowing him.

Still, I am pretty stoked.
I think it is still sinking in.
And I think it is going to take a while to get over how completely stressful and intense the last 6 months have been. I expect there may be a bit of a crash at some point in the future.

But right now, like the oncologist, I couldn’t be happier.

 Posted by at 10:27 pm
Nov 092004

There I was, just a few days ago, trying to organize some of my bigger, clunkier files on my computer.
My g-f draws a certain mix of horror and amusement from the fact that I need to store all the crap I have ever looked at on the desktop of my computer.
I was about to change all that. But it was one of those situations where I had to make things worse before I made them better.
So I wrangled up all my videos, all my music and all my pictures and slapped them into 3 different folders on my desktop and tried to burn them on to cd.
And, my burner has been acting a bit strange lately so when it didn’t work, I didn’t really think anything of it.
And, of course, it may be completely unrelated that I slammed about a billion gigabytes of crap on my desktop and an hour later my computer ran to the bathroom, choked quietly, and gave up the ghost.

Here is a pop quiz, oh gentle reader.
Do you think that someone who stores all their data on their desktop is conscientous enough to do thorough and timely back ups of their system?
Do you?
Because the answer in this situation is, of course I didn’t, you great ninny.
Why would I?
What’s the worst that could happen?

All this is my great big drawn out long winded way of saying I lost a lot of data and any and all e-mail that came or went since August.
And that’s okay with me, but if you wrote me since August and had never written me before, or not for a long time, then I no longer have your e-mail address.
How do you like them apples?
If you think you are one of these sorts of peeps, then drop me a line and I will put your lovely self back in my address book.

On other fronts, I do bloodwork on Wednesday and then chat with Dr. Oncologist. Then I do my chemo treatment on Friday,(hopefully my last treatment).
The day after Remembrance Day.
That seems appropriate somehow.

Everything feels really good and I am really optimistic about how it is going and how it will continue to go.
And I am struggling to not get too far ahead of myself or of reality.
You know, just because I am feeling good and about to do my last treatment doesn’t mean Daktari won’t say, “Spike, we think you are just the swellest little patient and we’d like to get to know you even better. Please say you will come back and join us in the chemo room for a few more treatments.”
I don’t know what he will say.
I know I feel really good, all things considered.
And I know that, statistically speaking, it’s a really strong possibility that I will be asked to hop up into the big Lazy-boy of toxicity again.
So… I am trying to just deal with what I know today.
Today I am feeling pretty good.
I think the acupuncture is helping a lot.
But you all know that, whatever way it goes, I am going to continue to bend your ear, or strain your corneas or whatever body part I can torment.
That’s what I will do.

As a sidebar, while my computer was in its own coma, I read both of the Lance Armstrong books, “It’s Not About the Bike” and “Every Second Counts”.
That was an interesting read.

For anyone who doesn’t know (because I didn’t until someone pointed me in this direction for a little info and a small dose of optimism), Lance Armstrong was a world-class cyclist and then he was diagnosed with testicular cancer.
When they did some testing, they realized his cancer had spread to his lungs and his brain.
And basically, that’s a rather grim situation.
He had two surgeries and a nasty, nasty whack of chemo therapy and beat the odds and went on to win the Tour de France 5 times.
He also went on to start the Lance Armstrong Foundation .
It looks like they do a lot of good advocacy work and a lot of lobbying for research money. It looks good from where I sit, but since I am not an American, I don’t know whether they are succeeding with their goals.
I can say that the site has been a really great psychological resource for me.
If you have been following along in your programme at home, you may have noticed that the stats for my particular type of cancer are pretty lousy. A while back I pretty much decided that it was stupid for me to read too many websites or be on too many e-mail lists that deal with ovarian cancer because I would get so spectacularly bummed out by what I read.
The stories from the survivors on really helped me stay in the game.
I have no idea whether Lance Armstrong is a complete wanker bastard, but he sure helped me by having those stories from survivors, and he gets full marks from me for that.

And another note for those keeping track… I did NOT win the Corvette in the early bird draw of the Cancer agency lottery.
I am holding out for my mansion in the British Properties.

The Scottish Eyebrow fell to its death the day after the picture below was taken.

R.I.P. little Scottish Eyebrow. You stood by me when all the other eyebrows jumped ship.

 Posted by at 1:33 am
Nov 032004


It seems that I have wee traces of hair coming back in. And that’s pretty exciting.
Oh sure, it may not be exciting for you, but let me tell you, it’s exciting for me.

And I have to say that through this whole process, my “Scottish eyebrow hair” has shown amazing stamina and just wouldn’t quit or fall out.
Now, back in the days of regular hair growth, I would, on occasion, have these wild eye brow hairs that grew with a mind of their own. My g-f refers to these hairs as Scottish eyebrow hairs and she would always rip them out by the follicle, with a huge amount of glee.
But it’s strange how even some mutant hair can end up on your own personal endangered species list. And so this little hair has remained while all the others have fallen to their death.

And now, as you can see, the other eyebrow hair is starting to grow back.
Now, the hair is probably in for a rude surprise when I go for the last chemo treatment next week, but I am hopeful that the chemo won’t do a total clearcut of my little hair sprouts and I can start rebuilding with a bit of a, dare I say, headstart.
That’s my hope.

On other fronts, I went for bloodwork yesterday.
That was sort of interesting and sort of funny.
See, I used to be on a 3 week cycle, so I would do a batch of bloodwork, and then the next week they would do bloodwork again, and the day after that I would get a chemo treatment.
At least that was how I was doing the calculations.
And then last time, they switched me to a 4 week cycle so that shifted things a bit. So, imagine my surprise yesterday morning when I looked at my day planner and saw that I was supposed to have done my first batch of bloodwork on Oct.29th and here it was November 2nd.
So, off we went to do that.
Seems they want the blood 2 weeks after the last treatment rather than one week before the next treatment.
Who knew?
Certainly not I.

I also had an interview with a lovely woman from the Hereditary Cancer Research program. We had a really good talk about genetics and her research and the politics of cancer versus the politics of AIDS and her work and my work.
I liked her. She was great.
And, now I have to go get a bunch more blood drawn because they have to test me to see if I have the BRCA1 or BRCA2 gene mutation.
Those 2 genes have been shown to “be responsible for some hereditary breast cancer and some hereditary ovarian cancer”
Anyway, I am going to have 4 more vials of blood taken at some point in the future and it will take them about 6 months to figure out if I am a carrier for the BRCA genes. And then I will need to figure out what I do next, because that would be a whole new ball game, and frankly, I am not completely ready to go there just yet.
But it *is* important to do this so my sister and my nieces can make the decisions they need to make.
I’d like to think that I got in this situation from standing too close to the microwave or from the nasty chemicals I was exposed to when I was treeplanting 20 years ago.
The idea that my sister and my nieces may have to deal with this, that’s just a totally depressing concept.

But it is going to take a while before I even let them take the blood, and then a half year to get the results, so if you want to know how that one turns out, you’ll have to stick around for the long haul.

 Posted by at 11:02 pm
Nov 012004


So, last night was Hallowe’en and this is what I looked like, assuming you were looking at me in a particular light.
It was kind of fun.
My g-f is often fond of throwing (what I consider to be) large Hallowe’en parties and I do my best to play along. Last year was a challenge because of the little gutter snipe dykes who barfed into our bathtub about an hour into the party.
That was kind of a drag, particularly because the bathtub had been decorated with Hallowe’en confetti and coloured water.
Ralph… right into it.
Golly, that was an icky mess to clean up, but it did mean that one particular guest got fast tracked in the good friend points, because she helped me clean it up.
No small thing.
Anyway, last night was a much more subdued Hallowe’en that last year. But I hear we are going to make up for it next year.

And here we are, the day after the Day of the Dead and the day before the U.S. election.
I know all my friends are hopeful that this current adminstration of maniacs is about to be made obsolete.
I hope they are right, but I have a bad feeling about this election.
But hey, America, prove me wrong!
Go ahead, I dare you.
I double dog dare you!
C’mon…. you can do it!

I guess, like so many things lately, I just need to be patient and wait to see what happens next.
So not my area of strength.

 Posted by at 8:48 pm