Aug 312004

Well, it’s about 5 days since my last chemo treatment and I thought I should say something.

I was just whining at Elaine that this chunk of time, this chunk 4 to 7 days after the chemo, is the worst.
The chemo itself isn’t all that bad, aside from being poked.

But right now, I am:

– bored out of my mind
– drugged out of my mind
– incapable of communicating much so I can’t generate dialogue with most anyone
– really easily worn out, which feeds right back into why I am bored out of my mind.
– completely absent-minded because of the drugs which makes me not much fun for a conversation which feeds into the boredom.

So, this is my main time to lay around and feel sorry for myself.
Unfortunately, I am bored with that too.

The other thing that is happening right now is the neuropathy in my hands and fingers. That’s annoying, though it does fit well with the way my brain feels. It’s interesting to have everything feel pretty much the same. Numb.

And… I know that it is a stage in the process.
And….. I also know that this stage of feeling crappy is starting to take up more and more time of each round of chemo, just because my body is getting more worn now and each time the sludge inside me gets built up a bit more and I have less and less resistance to all the shite in my system.
And just about the time the new cells start to grow again, we slam another needle in my arm and start the process again.
And, in spite of the whining, that’s okay.
I don’t like this process much, but I am not keen on the alternative.
Still, I am pissed off that my lovely summer of leisure is over and I never really got the sort of leisure I was hoping for.
And, it’s all for the greater good.
I do believe that.
I am just achy and whiny and watching summer evaporate before my eyes and I am grumbly about that.

Next year.
Watch out…. next year, I am going to be hedonism personified!

You know, in a big picture kind of way, I mean if you are going to have cancer and do chemo, well, things have actually been going pretty well for me.
In terms of what the test results say, my body has responded well to the chemo.
The people in my life have been wildly kind and supportive.
Things could be way worse.
I just get grumpy about some of the details.

But in a big picture kind of way, it’s going well.

 Posted by at 11:49 am
Aug 262004

well… today I saw my oncologist and tomorrow I do chemo.

The trip to the cancer clinic was even more fun that usual.
See, the way they set it up is, I have to be there first to do some bloodwork and then, about an hour and a half later, I see the oncologist and the trial study nurse and we talk about how it has been going for the last 3 weeks.

One thing you should know… the BC Cancer Agency is freakishly busy.
Like, it’s shocking and it’s depressing.
The staff there are all really kind and helpful and I don’t know how they do what they do, but they are all completely overworked. In the chemo room, in the lab, everywhere I have seen.
It’s not just the hospitals that are struggling because of the ridiculous cuts to healthcare.
It’s weird to have spent so much time inside the healthcare system over the last few months because it is painfully obvious how everything is stretched to the point where it will just snap if anyone pulls on it anymore.

So, we showed up around noon to do the blood work and the lab was even busier than usual. Busy busy busy, people everywhere. So, we sat down and waited.
And waited.
And waited.
And then, from inside the lab, came a scream of agony, and everyone who was waiting for bloodwork reacted in one way or another.
The man beside me wrapped his hand into a fist and smushed it into his eye socket in apparent anguish.
The woman across from me in her purple pants suit went ashen and her eyes became as big as saucers.
I sat and fretted.
And we all waited to see who would come out.
we waited a bit and then a rather pissed off woman came out.
I was concerned that I would have to go next to see the chainsaw phlebotomist, but it turns out I got someone with a gentler touch.
She took my blood and it went fine.

Then we met with the oncologist and the trial nurse.
It turns out I have anemia, and that’s why I was having such a hard time bouncing back after the last treatment.
So, they offered me a spot in yet another drug trial, this one for a drug that increases the red blood cell count with a drug, the name of which I forget.
It would be a double blind study and, of course, I would have a 50/50 chance of getting the placebo. And… I would be getting even more bloodwork done because I was in the study.
Elaine and I talked about it some and had decided we would talk about it at home tonight. At that point, Daktari comes back in the room and says ‘never mind about signing that consent form. We just got your blood work results back and your red blood cell count has gone up in the last week and it is too high for you to be in the study now’.
And, I guess that’s a relief.
I wasn’t really sure which way I was going to go on that.
But, I am still anemic, so I need to deal with that and I am not keen on the idea of doing transfusions.
The nurse says that iron tablets aren’t supposed to make any difference but in her experience they do, so I may want to keep taking them.
In fact, I just started taking them a couple of weeks ago and that may be why my red blood cell count got better.
Stay tuned for more news on that.

On the good news/bad news front, we were talking to the nurse and I mentioned something about how it seems like a lot of women do their chemo treatment and then have about 6 months of being okay and then their cancer comes back again. The nurse said, quite bluntly, “well, that’s because ovarian cancer has such a high rate of recurrence.”

The good news came in the form of the CA 125 results.
I am sure I have everyone trained to understand the significance of the test. But in case you don’t know, short of cutting me open again, the CA 125 test is the best indicator there is about what is going on with the cancer.
Before the surgery, it was at 150-ish.
Last time I saw the oncologist it was at 6
Today it is down to 4
So, that is really really good news.
The oncologist says that it is a really good sign that the CA 125 counts dropped so much and so quickly. He said that is a really important indicator of how it is going. He said that this sort of response means I am in the category of people that they consider ‘most optimistically’.
I am pretty happy about that.

And tomorrow, I roll up my sleeve and do it all over again.
I seem to have scarring happening on my veins in my hands, from the chemo drugs going in, or maybe because of how long the needle sits there. That’s kind of gross and painful, but not serious in any way.

It’s late and I need to pack stuff up for my day tomorrow.
And then sleep while I can.
When next I blog, I will probably be strung out from lack of sleep or drugged out of my mind, so do check back in a few days and see what I am ranting about.
Who would want to miss that?

 Posted by at 12:08 am
Aug 252004

small small.jpg

Well, once again I have fallen behind in my posting here.

But hey, I try to catch everyone up on every little thing that is fit for general human consumption in one fell swoop. Trying to make it worth your while. Ever the considerate one, that’s me.

Well, first of all, some friends in San Francisco sent me a bunch of cool bandanas to cover my shiny bald head. I asked Elaine to take some photos of me in the bandanas and now they are up on my gallery page.
You can find them here.

Also, Elaine and I had our photos taken by a lovely homer-sexual lad today. He is travelling around taking pictures of queer couples and he arranged to take some photos of us. We won’t see the photos for at least a couple of months but I do like his work.

Elaine’s van remains on the missing vehicles list. We got a rental car from ICBC, but it may be gone by the weekend.
Returned to the rental place, I mean. Not stolen.
Though lately, who knows…
Though it’s not a mid 80’s toyota, so the thieves will be less interested, I suspect.
Meanwhile, the battery on my truck is dead, because I have spent so very little time driving in the last 3 months that the battery just said ‘see ya later’ and kicked.
All that would be much more manageable if I wasn’t doing chemo again on Thursday. But that’s how it goes.
Bloodwork like crazy tomorrow, and chemo on Thursday.
I guess I better get that battery working and my g-f better learn to drive my truck.

This cycle is almost over and I am now past the mid-way point for this process.
It was weird because I was pretty enthusiastic about hitting the half way mark, but as soon as I did I became really tired of the whole invasive process, tired of being poked and prodded, tired of feeling crappy, just really extra tired and frustrated with it all.
And that’s a bit phuqued up. I mean it’s probably understandable and everything but basically, the bottom line is I need to cowboy up and just deal with it.
It hasn’t been a terribly lovely summer for me but I intend to make up for that as soon as I am feeling better and have my cash flow in better shape.

I’ve been feeling weird and frustrated and tired of being bald quite a bit lately.
And, you know, if one was going to have to pick a time to be bald, this summer is a pretty good choice, since it has been blisteringly hot.
The thing I find most exhausting and emotionally draining is the lack of choice that comes with so many angles of this.
And, actually, that’s not really accurate. It’s really a matter of being left to choose between really unpleasant option and really awful and agonizing option. It doesn’t seem like much of a choice, but ultimately it is.

Summer is coming to an end and I am still feeling a bit cabin-fevered. I can’t imagine what my mind will look like by December, but hopefully I will come up with some more creative ways to get out of the house.
I had a couple of adventures planned for the summer, but things seem to have fallen off the table and now you can feel fall creeping up and the days of romping in the sun coming to a close for this year.
We did bust out and drive up to Whistler for the day last weekend. That was fun.

Elaine and I are planning on going camping in a few weeks, and hopefully it will have rained enough in the meantime that we can have a campfire while we are away.
If you live in Vancouver and happen to have any camping equipment we can borrow, we would be temporarily in your debt.
Mostly what we need is a decent tent and maybe a camp stove. And maybe a tarp, if you have one.

Okay, then, amigos, it’s late and I have to go to bed so I can get up and get poked and all that.

Thanks for checking in.
Stay tuned for the next installment. It probably won’t take long.
Roger Dodger, over and out.

 Posted by at 1:27 am
Aug 152004

My girlfriend’s van got stolen last night.

But I’m not kidding.

We left our house today at dinner time, I walked out the door and there was the great emptiness on the street where her van was only yesterday.

Now, my girlfriend normally has a charmed life.

I think it must be me, messing up her mojo or something.

You’d think the car thieves would at least demonstrate some basic compassion, if not any taste.
But no.

 Posted by at 10:37 pm
Aug 142004


Okay, I uploaded a bunch of pictures from our last trip to Tofino. You can find ‘em here:

More Tofino Pictures

I need to move ‘em around so they are in the right and logical order, but I seem to have hit a wee snag and I need my g-f to help me figger it, but right now she is working on a website or two and I will get to that soon. Or not so soon.
But I know y’all want to see some old vacation photos of me with a full head of hair and luscious eyebrows.
So, knock yourselves out.

It was a really good trip, then we came home and everything got really crazy really fast. It sort of stands out in my mind as the transition point into all the shite that is currently happening.
So, look or don’t look.

In the meantime, hacking and slashing my way through the icky feelings and trying really hard to get to feeling kind of regular.
It seems to take a bit longer each cycle.
I think I am just about to feel normal-ish soon and I feel like the heat wave is part of why I feel so stinky lately.

And… hey… we are going to have a little yard sale next weekend.
So, if you’d like an invite, drop me a line and I will send it off to you.
All the details are TBA, except that it will be sometime next weekend, because that works for us.

Okay comrades, thanks for checking in with me and mine, and don’t forget the sunscreen.

 Posted by at 11:12 pm
Aug 112004

Well, here we are again, folks. It’s pretty damn hot here in my city and I am sweating like a little organic snausage. Okay, on second thought, maybe I don’t qualify as organic right yet. In fact, I may take a few years to get to the organic status, but I am willing to take the time and make the effort.

“So, what’s new?”, I hear you ask.
Oh, you know… not so much.
But I thought I ought to explain a thing to people because I, well, forget that that they don’t know. And you may think I am being cute and ironic when I say that, but no, I really mean that I forget.
Basically, these days I am likely to forget just about anything. If you are someone who has contact with me a whole bunch, it’s probably best if you know that my memory is totally for shit right now.
It’s a funny little thing that they call “Chemo-brain. You can read all about it on this other page or just pop the term into Google and learn up.

Anyway, that part of the whole chemo/cancer thing is pretty awful for me.
Folks who know me will know that there is this nasty little Alzheimer’s problem in my family and I have been watching that chew up my various relatives over the last 10 or 15 years, so having what seems like a dress rehearsal for my own episode is pretty freaky. Elaine, as alway, has been amazing and pats my head and keeps me from having a great big freak out. Well, she tries to contain the freak outs, sometimes they are big.

Anyway…. one of the reasons I write this, when I remember to write things here, is because I want people to learn as I go thru this. So, today I have decided that you should all learn about chemo-brain.
Lucky you.

What else?

I am now pretty much halfway thru this round of treatment, and we are all hoping that one round of treatment is the beginning and the end of the story and I just walk out the door of the cancer clinic all cured up and a better person.
That’s what I am hoping and I know I have a lot of support on that score.
But it’s funny being at the halfway point.

Wanna know more?
Follow me here…
Continue reading »

 Posted by at 11:48 pm
Aug 092004

I am in my post-chemo week and things are kind of confused in my head. Not in any sort of tragic way, but the smaller details get pretty muddled right now and I get spun around quite easily. Like, my original chemo treatment was on a Monday. Then it went to bloodwork on Monday and chemo on Tuesday. Now we have moved to bloodwork on Tuesday and chemo on Wednesday.
I don’t know why this minor shift has me so confused. I can handle it when it comes to dealing with how the garbage schedule changes but for some reason this last week or so has been really hard to keep track of.
So, if you have been expecting some sort of contact or confirmation from me over the last while, this could well be why you haven’t heard from me.
That, and we have been having just a few more troubles with the olde e-mail. Honest. But I reckon it’s all good now.
Oh, and then there was this thing where my hard drive kind of kicked up its heels, so lately I have been logging in thru web-mail, which is kind of a drag but better than nothing. But web mail is less convenient for answering people and stuff.
So, you see, I have a billion good reasons to have not been in touch.

I guess if you came by here you are wondering how it is all going, so I’ll touch on that now.

Physically, things are getting better in a variety of respects.
I’m still pretty happy that my test results are coming in with such good numbers and I am trying to keep that in perspective. It’s good and at the same time, I still have a ways to go, like about 5 and a half years, before anyone is going to pat me on the head and tell me I am cancer-free. But I am happy with how it is all going.

Once again we adjusted my meds and I am getting some sleep this time, and that makes such a huge difference. The fact that the temperature has dropped a bit is a huge help as well, because now I have a better chance of being able to stay awake thru the night.

Pride week has come and gone and it was a good thing, but it also took a chunk out of me. All in all, I am glad it happened and glad that we participated the way we did, but I confess, sometimes I feel like people look at me and see some tragic figure, and that gets kind of emotionally tiring for me.I *want* to be regular and be treated like a regular person, even though I know I am not very regular right now. It’s tricky. I realize I do require some special considerations now. I guess I am still struggling with the humility that requires. Never my area of strength.

I keep wrestling with this urge to get out of town for the day and spend some time with my sweetie, just hanging out somewhere green, or on the ocean or something. I know I am going to be cranky as hell when it starts to rain and I realize I missed the chance to spend a day in the woods all relaxed. Okay, really what I want is a whole chunk of time out of the city, but my current medical logistics and financial humiliation make that basically impossible, so what I am after is a good long day in the woods or at the beach. Is that so much to ask?

I am off to spend the day dealing with government employees who may or may not be decent to me, who knows?
I certainly don’t envy them, but on the other hand, I don’t envy me either, so it would be nice if they could just do the right thing and fork over some rent money.

Well, I need to go shower and then go plead my case.

Later, amigos.

 Posted by at 10:37 am
Aug 052004

nyk and bike.jpg

I’m sure there are more than a few Boomtown rats fans out there that know and understand the tune I am humming in my head right now.

Okay… it’s been a while and I feel like I should have a lot to say.
I probably do, because a lot sure has happened. I just don’t know if I will have the steam to write about it all tonight.

A couple of things to talk about for sure.
I did my 4th chemo treatment today (thus explaining why I am still up at 2:30) and reaching number 4 means I am halfway thru if everything goes well. Fingers crossed.
And so far the test results indicate that everything is going well. The first set of results came back with my CA125 scores being 8.6
Today, I got back a newer set of results that are at 7.1
(If this is making as much sense to you are trigonometry after smoking Panama Red then flip back to the entry called “3 down, five to go” cuz I explained all this stuff there. if you don’t want to go there and read, just trust me that it’s good news.)
My immune system is still pretty delicate and I have to be careful.
We spent the weekend doing a ton of social stuff, because of Pride and weddings and such, and I came in contact with lots of people which was good mentally, mostly, but it is a bit risky physically. I think I got a bit run down from it all, but I think if I can make it through the next few days without getting sick, then that will be excellent. I have known from the beginning of this that this was going to be the busiest weekend of the whole treatment, and it was.

At the top of this entry, you can see me being the fluff on the back of the bike.
If you pay attention, you will also see that I have the legs for the job.
That was really really fun.
I had been hoping to get a picture or two from the weddings we went to to post here but that hasn’t been possible. Elaine and I were dressed rather sharply and I was hoping we might get a photo or two, but I think they may be a while coming.

Anyway, it’s almost 3 and it’s time to try sleeping again.

If sleeping doesn’t work, there will be a lot more to read on this page.

 Posted by at 2:49 am