Something Evil This Way Comes

And now you should steal from me!

Bloggers of the world, get your calloused little digits over to the MIT site and take this survey.

It seems to me that we are changing the world here and I think it’s exciting to be part of the scientific analysis of it.

Okay, so I had to go to a memorial service on Sunday and I am still dealing with the experience.

It was strange on a few levels.

First and foremost, there is the loss of someone who was in my life, even if that has become a peripheral involvement over the last few years.
And there is the great sense of tragedy for the family.
That part is awful.

And there was the Big Chill factor.
I worked with Benjamin for about 8 years, and it was, at the time, a really close-knit group of people at that workplace.
Almost all of us have gone on to other things in the meantime, but there we all were, just like it was ten years ago.
It was one of the most surreal time-tweaking experiences I have ever had.

But the part that was really weird that was particular to me was the fact that on some level, I am the person many of those people expected to be dead by now, not Benjamin.
That is partly because Benjamin wasn’t someone you would expect to die at the age of 54. He ate pretty well and was a pretty active guy.
And, I think for many people, when they hear that someone they know has cancer, they begin that process of letting go, of anticipating the future loss, and pretty soon the person with cancer moves deeper and deeper into the territory of “other”.
Now, that isn’t true of everyone, but I certainly have felt it from some people over the last chunk of time.
So, it is bizarre on a lot of levels to show up at the memorial service of the guy who shouldn’t have died when you are the one that people had expected to die.
It’s sort of like I cheated death and somebody had to take my place.
(Or maybe I watched too much Buffy while I was sick and I have some Whedonesque guilt. I dunno.)
It was weird.
And I am still thinking it through.

One thing I will say… when that day does come when I kick up my heels, every one should know that there is no need for people to talk about my defects of character at any memorial service that may occur.
I’m just sayin’.
People get turned off by how smarmy a lot of these things are, and I tend to agree. But having spent some time listening to people be all touchy-feely and honest about the dead person’s shortcomings, I have to say, it’s no better, and actually, I think it’s worse.
Go have a beer with your inner circle and talk about that stuff.
Don’t say it in front of his kid or his partner or his brother.

Anyway, there it is.
So far, I am surviving, and it’s strange. Sometimes, it’s strange.
Of course, if you have been doing the recommended reading at home, you know that the ‘survivin’ status could change in a heartbeat.
But I am trying to be happy with what is good in the moment, because I would be so spectacularly pissed off if I had a recurrence and I hadn’t made the most of it now, while I am doing okay.

This last few weeks have been kind of weird.
See, I am a person who focuses on calendar dates quite a bit.
And right now is about a year after when I started chemo.
I keep thinking back to what it was like to be about to start chemo, and how overwhelming and frightening it was to have to start this thing I only knew by its bad reputation.
And how fast everything happened, and how fast my life changed from employed and pretty self-sufficient to being on disability unemployment insurance and having to rely on my girlfriend and my friends to get most basic things done.
I remember being afraid that the process would harden me emotionally, and I didn’t want that.
I think it did, and frankly, I can’t see any viable alternative.
Nowadays I think that my biggest job is to make sense of what I just went through, and then I realize that I don’t have a clue where I should begin with something like that.
And I wonder if I start, will I just sit down and cry about what I lost, and cry, and cry, and cry, and maybe never stop?
How will I stop?
There is a whole bunch of anger inside me because of what I lost, and then I feel unreasonable for being angry because, for Christ’s sake, I am still alive, against all odds, so what do I have to be pissed off about?
I had great care on every possible level.
I know that and I believe that.
And there is still an underlying anger that I had to go through that.
That I put Elaine through that.
That I have to spend so much effort to get back to where I was before and part of me knows I will never get there. That I can’t just become a normal person again.
It’s like I was abducted by aliens.
I know what happened and I know that it changed me, even if I do a crappy job of trying to explain it to you.
I know that the time I spent on Uranus has made me different than the average earthling.

When I was doing chemo, people told me I was brave.
See, I don’t see it that way.
I just did what I had to do and I think almost anyone would have done the same.
You just put one foot in front of the other and you do what they tell you, because you don’t have many realistic alternatives.
And now that there is time to breathe and time to look back over my shoulder, it’s time to try to make sense of it.
I feel a bit like I fell through the ice and then crawled back out and made my way to relative safety. I still know the ice could give out underneath me at any moment, but for now, I am still trying to get my vital signs back to normal and deal with the fact that I am freezing.
I don’t think I do a very good job of explaining it. I think my cancer comrades do a better job of explaining it in their blogs.

So, that’s where it’s at for me these days.
And no, if I bump into you in person, I don’t want to talk about it.
It’s just how it is.
I don’t need anyone to feel sorry for me or anything. I just need people to understand that even though I finished chemo, but I haven’t completely finished with the cancer episode.
I wish it was that way, but it’s not.

Okay, I found a truck.

It got a really good bill of health from the BCAA mechanic.

I gave the man my money and now I qualify as just another dickhead in an SUV.

I am such a macho dyke.
It’s all a bit ridiculous.

Still, it’s a great truck.

Newsflash, taken from here

I’m still trying to figure the exact details of all this, but at first glance, it seems like a good thing, though I don’t understand why the Bloc Quebecois MP’s would vote against it.
I heard about it from my pals at the National Ovarian Cancer Association (NOCA), so I reckon it’s good news.

Read on.

Cancer Community Congratulates Federal Members of Parliament for Supporting National Cancer Strategy

Signals cancer as a health care priority

OTTAWA, June 8 /CNW/ – The more than 30 leading Canadian cancer
organizations represented by The Campaign to Control Cancer applaud the
Members of Parliament for voting yesterday afternoon in support of a motion
directing the federal government to fund the implementation of the Canadian
Strategy for Cancer Control.
The coalition commends Steven Fletcher, the Conservative Party Health
Critic, and Member of Parliament for Charleswood-St. James, MB, for his
leadership in tabling the motion which received the support of all political
parties with the exception of the Bloc Quebecois.
“This is a monumental occasion for Canada’s cancer community,” said
Dr. Brent Schacter, Chief Executive Officer of the Canadian Association of
Provincial Cancer Agencies. “We’re seeing the results that can be achieved
when a community of impassioned and engaged experts, patients, survivors and
other stakeholders unite with government to create an evidence-based,
long-term approach to fighting cancer.”
“Yesterday’s vote reaffirms that the Canadian Strategy for Cancer Control
is an innovative approach to public health policy development,” said
Pat Kelly, cancer survivor, advocate and spokesperson for The Campaign to
Control Cancer. “We now look forward to working with all levels of government
to implement the national cancer strategy and bringing the Quebec cancer
community into its rightful leadership role.”
Support for the Canadian Strategy for Cancer Control leads the way for
consultative processes for developing similar strategies for heart disease,
mental illness, and mental health.
The federal Liberals have pledged $260 million in funding support over
five years to implement the plan. It is estimated that an implemented national
strategy would mean, over the next 30 years:
– preventing an additional 1.2 million Canadians from developing cancer
– saving the lives of more than 420,000 Canadians
– preventing the loss of more than $101 billion in wage-based
productivity
– preventing the loss of more than $24 billion in total government tax
revenues.

About the Canadian Strategy for Cancer Control

The Canadian Strategy for Cancer Control is a national strategy that has
the potential to bring about the sustained, coordinated, comprehensive and
collaborative approach needed to meet the challenge of our growing and aging
population. A considered and rationale approach to the increasing number of
new cancer cases, the Canadian Strategy for Cancer Control offers a solution
to the cancer challenge. Each province will be able to independently build its
own cancer care management system from a foundation of national data and
knowledge that is gathered from across Canada and shared by all. Current,
state-of-the-art information about all aspects of cancer will be available to
Canadians no matter where they live. The Strategy will reduce duplication,
fill in gaps and ensure scarce resources will be shared.

Understanding Cancer Control

Cancer control means dealing with the disease through a systematic,
sustainable program of public education, prevention, proper screening, early
detection, appropriate and accessible treatment, and supportive care for all
Canadians living with cancer. Cancer control can increase survival and quality
of life by effectively converting knowledge gained through research,
surveillance and outcome evaluation into practical strategies.

Canada Losing Control of Cancer

Cancer kills more people in Canada than strokes, respiratory disease,
pneumonia, diabetes, liver diseases and HIV/AIDS combined. This year alone, an
estimated 69,500 Canadians are expected to die from cancer – 1,200 more than
last year – and 149,000 will be diagnosed with the disease. The number of
cancer cases will increase by more than 60 per cent over the next decade if no
action is taken.
While the increase of cancer in Canada will present enormous future
challenges to our health care system, other countries have demonstrated
dramatic reductions of this burden by systematically applying existing
knowledge and through developing comprehensive national cancer research
initiatives.

Taking Action

The Control Cancer Campaign web site provides information and tools to
get involved in cancer control. Visit www.controlcancer.ca.

I suppose you’re wondering what’s up, and all that jazz.

Here’s a quick peek at the skinny in the life o’ Spike.

I am dealing with the repurcussions of that bus-runs-light incident these days.
Beaucoup time spent going for massage or physio appts.
Lots of time spent looking for the replacement truck.
If anyone local knows of a good, used Toyota truck, drop me a line. I am pretty specific about what I want but maybe someone out there is selling my dream truck and I haven’t seen it yet.

It’s a long, gruelling process, this buying a new (used) truck.
Real people don’t tend to sell Toyota trucks, so I find myself going to those car dealerships that are affiliated with no particular manufacturer and about which an entire set of jokes and stereotyping exists. Movies, books, television, all mock the used car salesman.
And now I find myself having to speak with these men, for they alone hold the keys to the used Toyota truck.
I confess, it makes me feel a little dirty.
I confess, I wonder if I have some sort of Toyota truck addiction, the way I will set aside my normally high social standards and suddenly ponder giving Captain Polyester spectacular amounts of money, the way I let him shake my hand and give me his business card.
And for some reason, all of these dealers seem to spray the inside of the trucks with a ghastly dose of Hai Karate cologne. I am too afraid to even try to think what smell they are covering.
I always shower just as soon as I walk in the door.
You never know how low you may sink.
Trust me on this.

But you came here to read about cancer, and not about sleazy used car dealers.
I know that.
So, here is me grabbing the tiny, almost invisible threads that bring these two subjects together.

Over the last week or so, I have looked at quite a few trucks.
Some are quite obviously crap and some look pretty good on the outside.
But I find myself wondering, “what’s going on under the hood? What surprises are brewing beneath the surface?”
And you see, that’s how buying a used truck is very similar to going through the whole cancer shit-a-roo.
Because I am telling you, I never knew what evil was brewing beneath my shiny exterior.
And now, I am left wondering.
About all of it.
And so far, Dr. On-call-ogist says I am good, I am cool.
And I am more interested in keeping him in the good news section of my life than pretty much anything else, but I would still, also, like to get a new, reliable, good looking, reasonably priced Toyota truck.
And now you understand how truck shopping is very similar to ovarian cancer.

You’ve learned something here today, and for that, I am glad.
I would hate to be just another stupid internet site.
Gah.

you may have figured that it was just about time for my 3 month check up and all that jazz.
I know that Elaine has something that she plans on posting about the whole thing, so I have been leaving this space blank, but now I seem to be on a posting roll, so too bad for her.

Last week my clinical trials nurse called me and asked me if she could switch my appointment time because she had some other something happening and she wanted to be there for my appointment and could we move it to the 18th.
I was so cool on the phone. “Oh, yeah, sure, no trouble. But when should I do the bloodwork?”
“Oh, tomorrow or the next day,” says she.
“Oh, sure, great”, says I.
And then I got off the phone and had a total meltdown.
Ahhh, I’m not ready, not ready!!
See, I have concocted a series of rituals that lead up to the bloodwork episodes.
This is a newfound luxury in the post-chemo days. But still, I amp up my vitamins and supplements and green tea intake.
I drink miso soup and I cut out dairy fat.
All this because my oncologist told me that the CA 125 count can be tweaked a few points because of what you had for lunch.
Now, I think he said that to me to reassure me that some low level fluctuation was okay and basically indicative of nothing.
But me, I decided that it was important so I came up with this series of pre-blood draw rituals.
And when I got the phone call, I hadn’t started my routine.
I simply wasn’t ready.
For 18 hours, I was a basket case.
My girlfriend really has the patience of a saint.

The 18th came and… I had an appointment with one of the counsellors at the BCCA.
I decided I probably needed to talk to someone about my ongoing near-death experience and that talking to a counsellor didn’t necessarily make me a sissy when my ex-girlfriend expressed no small degree of horror that I had not, till that point, availed myself of the service the BCCA provides free gratitis for those of us pudgy bald peeps and those of us with second growth hair.
It hadn’t been my intent to go to the cancer agency twice in the same day, but that’s how it all worked out with the appointment swap.

And there I am, on the elevator, going to my appointment, when two middle aged people get on, struggling to figure out what floor they need to go to.
They turn to me and ask, “What floor is the lab on?”
And I said, “For bloodwork?”
And they looked sad and said yes.
“The second floor” I said.
By the time it was out of my mouth, and I had realized how lost and sad and new to all this they were, they were off the elevator.
“Good luck!” I felt like shouting after the doors closed.

Off I went to my appointment with my incredible shrinking woman.
We had an interesting talk about ovarian cancer.
She said, when it comes to recurrence, it’s different than other cancers.
She said that with other cancers, they go in and they get it or they don’t quite and it’s pretty clear cut whether you are all better or not.
She said that those of us with ovarian cancer, or who have had ovarian cancer, have to get used to living with the greys.
Cuz with us, it isn’t so black and white.

I don’t yet know what I think about that.
I am still tossing it around in my mind.

Every time I am at the BCCA, I think about Marlon Brando saying you have to make horror your friend.
All the people who are there are somehow co-existing with horror in their lives.
And almost all of them are really pretty great people.
It’s an amazing place and one that I don’t want to spend too much time at.

And then I came home. Or at least I started to come home.
As I left the parkade at the cancer agency, some man got all aggro on me because my truck inched a tad across the line into his lane as I turned on to the street.
It happened because someone had parked illegally and their ass-end was in the way and it made the turn kind of acute and I nudged into his lane just a hair.
There was no accident and there was no damage either way. No screeching of brakes, no crashing of steel. But he was all agitated and he wanted to make sure I knew he was agitated.
I saw.
And then I stuck my tongue out at him.
I kind of shocked myself, I confess.
I was overwhelmed by what a complete wanker I thought he was, going all aggro on people coming out of the cancer agency.
He probably kicks puppies too.

So, then I screwed around, went to the gym, tried to stay calm… la la la..
and then I went back across town to see my man in a lab coat.
And, after all that appointment shuffling, my clinical trials nurse wasn’t there and it was a substitute.
She was nice enough, I guess, but I confess that I have established a relationship with my clinical trials nurse and my oncologist and I am always a bit thrown when I get new people.
Also, I think some of the staff there find me and the missus a bit off the wall and it takes them a while to get used to us.
I don’t know why.
Anyway, we were blah-blah-blah’ing with the new (temporary) nurse and we got to the part where we talk about how my recovery is coming, my return to life as I knew it.
And then she gets all Oprah Winfrey and says, “Of course, I know your life will never be the same as it was before all this…”
Like she is so informed and sensitive.
I was horrified.
I said I had every intention of having that life back again and that was the standard by which I judge my recovery.
“Oh yes, well, of course… that works for some people…” she back pedalled.
Damn…

Also, this nurse had this habit of just bursting in the room without knocking.
Finally, Elaine stood there and kept her boot up against the door so that no one would just barge in while I was changing and stashing my Joe Boxer’s in my 501’s. (Nod to Cancerbaby)
Someone did actually try to come in without knocking while she had her boot against the door.
I think that counts as three or four barging in episodes in one appointment.
Rookies.

Anyway, finally my boyfriend in a lab coat came in.
He did what he always does in these appointments. He chatted with us about life and my
suntan.
We talked about Kaua’i and told him he should go and take the wife.
He poked and prodded.
We acted like there was nothing in particular we wanted to hear, that our lives weren’t hanging in the balance, depending on what he might say.
Finally he said, “you are disgustingly healthy. The CA 125 is at 4 or less.”
Phew!
Phew again!
I think that now, this many days later, Elaine and I are starting to actually get normal-ish again.
A friend passed me on the street later that night and I said I had seen my oncologist that day.
Since I was so visibly scrambled, she thought the news had been bad.
No, not bad… it’s just hard to rebound from the build-up. That’s all.
We are both enormously happy.
And it was a really hard build-up.
Maybe at some point you start to feel like you have lots of good history built up and maybe you feel like you are out of the woods. I don’t know.
It’s a feeling I’d like to have one day, if it’s available.

Anyway, that’s the news from my corner of the world.
And it’s good news.
And we are happy about that.
What’s new with you?

A couple of months ago, I mentioned to a friend that this blog started out as a way to keep my friends and co-workers up to speed with what was going on with me and Elaine and my treatment.

It was an off-shoot of the original blog that still exists in an abandoned, older sibling sort of way on this very site.

Since that time, things have shifted some.

Somewhere along the line in my treatment, I decided I wanted to document what was happening with me because when I went online right after my diagnosis, all I got was a shit load of dire information and it got me more and more freaked out.
I wanted to talk about how it was as I was doing it so that other ovarian cancer patients might be able to read this blog and have some sense of how it works (at least, how it worked in my case.)
Standing at the starting line of the ovarian cancer race is daunting.
I am not going to tell you it has been a picnic going through all this, but I sure don’t miss the early days of horror and confusion and all around overwhelming panic.
Once I was actually in it, I thought I should be yelling back over my shoulder for anyone who was looking on, wondering how it went.

And I also wanted to say thanks along the way to all the people who helped me, from my girlfriend to my G.P., to my former co-workers, to my current co-workers, to my oncologist, to my surgeon, to the crazy folks in Alberta who I have never met but who helped us out so much, to my future in-laws, to my good friends, to my cats, to the folks at my gym, to the people who helped us take the vacations, to the clinical trials nurse, to the friends who paid for my plane ticket, to the friends who stayed in touch and let me know they were there for me, to the people who helped us eat organically, to the guy who worked on my truck while I was sick, to the drag kings who performed at Lick, to VWL and other people who arranged fund-raisers, to my ex-gf who took care of the details while I was sick, to the cancer survivors who helped me keep the faith along the way…
Damn… the list goes on and on and on, and the danger with starting it is that I am doomed to have it be incomplete.
This list actually isn’t intended to be a comprehensive thank you list.
My point is, I was trying use the blog to say thanks to those people, you people, along the way.

And then it also, recently, began a small networking opportunity for me.
For me, a little online support community has sprung up between hooking up with Louise and Cancerbaby and Limbodacious and reading what J’s daughter has to say about her mom’s ovarian cancer.

It’s not a disease I would wish on anyone.

And if I could guarantee that none of us would ever have to deal with ovarian cancer or any of its offshoot annoyances, I would jump right on that.
But I certainly do appreciate the sense of community.
The ability to talk about how it is right now, and how it might be in the future, with some pretty razor sharp women has been a real relief for me.
See, ovarian cancer tends to hit women who are about 20 years older than me.
And, you may not understand this, but someone like me, talking about my ailing girl parts, doesn’t make a good fit in those OVCA chat rooms.
Tends to frighten the locals.

I really appreciate that these women are out here blogging.

But that isn’t really what I came here to talk about
I came here to talk about blogging in a larger sense.
I read this article about “blogging from your sickbed” (ghastly title, by the way) and thought people ought to read it
(though you may have to sign up for a subscription if you are reading this any time time after it is still steaming in its freshness from being posted.)
I think this blogging we are doing is actually really interesting and ultimately really important.
Maybe it’s the dormant anthropologist in me, but I think these stories are going to go a long way towards changing how other people experience similar situations.
That’s what I think.