Dec 292004


I don’t know how I missed it when it happened this summer, I guess I was under the weather, under the covers, and out of the loop. But Lance Armstrong won the Tour de France for the 6th time.
I never really thought that some straight white boy from Texas would serve as some kind of inspiration for me, but then I got cancer and I found all the rules had changed.
For anyone who doesn’t know, Lance Armstrontg was an up and coming cyclist when he was diagnosed with testicular cancer. Things looked really bad for him but he became really involved in his treatment and go really good medical help and he beat the odds.
He has been cancer-free for 7 years now.
If you want to learn more about him, go here.

I think it’s great that he is out there, raising money for cancer research and also showing people what they can achieve after cancer.
I think he is the coolest straight white guy to come out of Texas since Lyle Lovett.

Damn straight.

 Posted by at 12:46 am
Dec 212004

wikinn blog2.bmp

It’s a long story, gushing with lots and lots of details.

Here is a wee bit of the story.

My co-workers got together and sent me and the gf away to Tofino. To the Wikaninnish Inn.
We were picked up by a limo.
We were flown there in a plane.
We were picked up in Tofino by a fellow driving the fanciest, most tricked out van I have ever seen.

The hotel is basically a world class resort and they make a point of looking after you.
We had a jacuzzi in our room, and the tub looked out onto the ocean.
Our bathroom was huge!
After oozing out some of those old chemo toxins in my jacuzzi, I would then hop in the rather spacious shower.
Nice, nice, nice.
I spent a lot of time in that jacuzzi.
Oh, and the room is stocked with a bunch of Aveda products.
And everyday, the housekeeping staff come by and put more Aveda products in the room. I was kind of kicking myself that I was under-utilizing the shampoo.

The restaurant was spectacular.
The food is really, really delicious. And ask anyone who knows me, I am a food snob.
The food in the dining room was comparable to the food at Sooke Harbour House.

And the spa.
I arranged for a spa visit for Elaine.
It was a surprise for her. So, obviously, she didn’t know about it.
So, imagine my horror when Elaine was still lounging in the tub in our room a few minutes before her appointment. I had to ask her to get out of the tub to come on an adventure with me.
She came willingly, even if it was a bizarre request.
I took her downstairs to the spa and dropped her there and she returned, and couple of hours later, all googley and mushy.
It was really good.
It was so good that the next day I had to go for an appointment myself.
It was all kind of a trip.
The staff have you select the scent for the oil they are going to use on you, all while your feet are soaking in a warm water bath with marbles to smooth out the crinkles.
My massage was great.
And afterwards, I sat in the steambath for about an hour and a half.
I’d been sitting in the steambath for about an hour when another guest, an older man who was on the same plane as us, came in.
We started chatting, because that’s what you often end up doing in a spot like that when there is just the two of you.
I mentioned I hadn’t been at work for the last few months.
He asked if I had been off doing chemo.
I said yeah and he told me about how he had had prostate cancer. We talked about treatments and attitude and Lance Armstrong.
He said cancer people have to stick together.
He said he is ‘involved with’ a company that is doing the first stage of clinical trials on a drug that has been developed to treat prostate, ovarian, and lung cancer.
It was all kind of amazing how he went from the old guy on the plane to the kindred spirit that I like gabbering with.
And when we got back to Vancouver, he and his wife hugged me good-bye.
And I let them.
And I don’t really do the hugging thing much, but it seemed like the right thing to do.

And, beyond that, we spent quite a bit of time on the beach.
It was really quite mild for December, so we could go for nice long walks. The photos should make it to the gallery soon.

Then the time came to head home.
We checked out and got back in the tricked out van.
We got to the airport.
The plane that was supposed to take us home couldn’t land, because he was having some visibility problems.
He took 3 swings at it and then took off.
We stood around, with our new-found cancer allies and kindred spirits, and tried to understand what happens next, after your plane abandons you.
It ended up that they sent us by cab from Tofino to Nanaimo.
I guess it was handy that our airport check-in fellow also doubles as the cab driver in Tofino.
At the last minute, this hippie gal showed up and she was on her way to Vancouver too so there were six of us, including the driver, in an SUV, driving Highway 4.
I love that drive and I had been missing it, even though flying is great.
Unfortunately, hippie gal sat in the SUV and coughed the whole way to Nanaimo and now my girlfriend is sick (for the first time in almost a year.That really sucks, especially on the week of Xmas.)

A few hours later, we arrived in Nanaimo.
Our pilot was there, waiting for us.
We hopped into the plane, and we were back in Vancouver lickety-split after that.

It was nice to get home.

Then we hopped in the bath, splashed around and got out and went to my staff Christmas party.
That was a rather startling contrast, but it was really good to see some of the folks again.

It was an amazing week and a fabulous experience.
Really, it was the trip of a lifetime.
Thanks to all the people who made it happen.

And now, I have to go take my Vitamin C, since I have a strange tickle in my throat, and wouldn’t that just suck if I got sick too.

 Posted by at 11:48 pm
Dec 192004

wikkin blog shot.bmp

Me and the woman just got back in town from this rather spectacular vacation that my wonderful co-workers arranged for us.
See, a bunch of my co-workers got together and got us a 3 day vacation here.
It was all kind of amazing, and we have tons of pictures and mini-movies that we will plunk into our galleries soon.

It was an amazing trip.
And I am going to sit down and write up the event in a way that can hopefully do it justice.
In the meantime, I just want to say that it was amazing.
And thank you to all the folks who made that happen.
It was totally incredible.
You guys are amazing.

 Posted by at 11:41 pm
Dec 122004

hornby blog.bmp

Okay, it totally sucks to have cancer, and to have had cancer, to have gone thru having cancer, whatever way you want to describe it.
But I have to say, I have been the recipient of some spectacular kindness since I got sick (not to imply I was terribly hard done by before).
This last week, I got to go to Hornby Island for a few days, and it was really, really great. I just got back this evening, and I am still getting settled, but it was really great.
If you are looking for a quick getaway to the Gulf Islands, you should really consider going here . I did, and I had a really good trip.

I realized a while ago that I have just been marching through this whole experience and I have just clenched my teeth and white-knuckled it through this whole experience, and I haven’t taken the time to think it all through. I know that may sound strange, given how much time I have spent laying around in my pajamas over the last few months, but I wasn’t really ready or willing to ponder the whole thing till I was finished.
So, now I have a bunch of thinking to do, and I was lucky enough to get hooked up with the Hornby trip.

Thanks to everyone who made that happen.

By the way, look at that hair coming in, eh?

 Posted by at 12:06 am
Dec 022004

Well, I met with my oncologist earlier this week.
Everything is looking really good and, as he would say, I am in the group that has the highest likelihood of beating this thing.
And my CA125 level has stayed at pretty much the same spot and that’s good news too.

Now my job is to try to get my life back to normal, and get things back on track.
And also deal with the fact that it could come back.
I am still trying to figure out how this post-treatment phase goes.
Like, when I started doing chemo, I got kind of freaked out by the whole thing.
Then I thought about it and figured that, in all likelihood, I would live through the chemo process, and it would be the aftermath of that process that would be where I ended up being bitten on the ass or not. And now I am in that process. On one hand, I just want to get on with everything, and on the other hand, it’s all a bit eerie. I think I just need to make it through the next chunk of time with everything going well and then I can start to relax some.

I have been extra lethargic this time. I don’t know why. I was much more active after the other treatments. I don’t quite know why I am dragging my ass so much this time.It’s been really grey and rainy and dark, and that hasn’t been helping to motivate me, that’s for sure.

My acupuncturist says I don’t seem like someone with low energy, and he also says that I am doing better than some of his patients who haven’t done chemo, so that is good news.

My hair is starting to come back in, slowly but surely.
Right now, I am covered in little dark brown baby thin hairs, all about an 1/8th of an inch long. And it really is like the hair that babies grow, really soft and fine.

It’s all kind of weird. After my last chemo, I was all jacked up and wanted to celebrate. But we didn’t celebrate. And now I am kind of in a weird state with it all and it doesn’t feel like something to celebrate anymore, or something…
It has been weird to go through something so huge and not wrap it up somehow. But I am no longer clear on what I ought to do to wrap it up.

On other fronts, we had to change the site a bit because I kept getting about 35 spam entries per day in the comments section. We had to upgrade to something that lets me approve comments before they show up, because the old way was becoming ridiculous.
We will get the whole look back on track soon, just you wait.

 Posted by at 4:24 pm
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