Something Evil This Way Comes

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.
Whew!

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.”
Oh..
Shit.

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?

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.

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.

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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.

I went for another round of bloodwork today.

First of all, let me just say I am continually impressed by how sweet the folks who work at the lab are. It’s a big lab that does bloodwork for most everyone, and for some reason the Cancer Agency sends me to them once per cycle.
So, every three weeks, I have bloodwork done at the big lab and again a week later at the Cancer agency.The big lab is often crowded with weirdos but the staff who work there are always really kind. Actually, I have to say, I think they are nicer than the folks in the lab at the Cancer Agency who poke me and drain my blood. Or maybe it’s because at the lab the poker-gals always make some comment about the cancer and ask how it’s going. No one does that at the Cancer Agency, not when they take my blood. Now, I kind of understand why, but still, when you are getting poked as often as I am, it’s nice when they are sweet to you.

In spite of my courageous exterior, I am really a bit of a candy-ass when it comes to giving blood or having it taken. I have to bring Elaine with me to hold my hand. You might expect that I had made some progress on this score over the last few months, but no.

I was thinking earlier today that if everything goes well and according to the original plan, then I am basically almost at the halfway point of this process (not to suggest that I am counting the days or doing anything other than savouring every moment of this…, mmmm… yum…).
So, yeah, today, I was sitting in the sun, thinking about being a bloodletting candy-ass and I thought, “whoo hoo, I am coming up on the halfway point!”
And I confess, I enjoyed that idea for several hours.
And then I realized that even if everything continues to go well, I will still be going for bloodwork every three months for the next couple of years and then every 6 months and so on…
Which is still a nice long gap compared to what I am doing now.
And you know, it’s a necessary evil.

Anyway, bloodwork today means I am starting the build-up process for round 4.

This week I will:
do bloodwork
see my GP
go to the launch party for the calendar my gf spent the last few years working on
Have a CT Scan
Go to Pride
Go to the wedding of some of my favorite people.

This is a very busy week for me. I expect it will be the busiest week I have thru the whole chemo thing.

Next week I will:
do bloodwork again
meet with Dr. Oncologist and the nurse who co-ordinates the study I am in
do another round of chemo
stay awake for the remainder of that week and a goodly chunk of the next (unless we come up with the right combo and find some balance between the steroids and something else so I can actually get some beauty sleep.)

I really really really want to be able to enjoy some of the summer this year.
I had really high hopes for this summer, and it’s more than a little ironic that I got knocked on my ass. I am trying to figure out a way to get out of the city, even if only for a day.
I’m getting a bit cabin fever-ish, and I think it’s time for my Houdini impersonation. It may have to wait a couple of weeks, but that’s my plan.

On a totally different note, I am re-reading Harry Potter and the Order of the Phoenix, and that’s a lot of fun. I had started it in April, when Elaine and I went to Tofino for our birthdays, but we came back to Vancouver and everything kind of went to shite quite quickly and I couldn’t focus on it while I was in the hospital and it all just kind of fell to the wayside, until now.
Unfortunately, it looks like I will still have to wait a while before Harry Potter and the Half Blood Prince comes out.
Guess that means I have to start again with the first book and make my way through it all over again.

SpikeHarris.com is moving to a newer server, so please don’t comment on anything until Friday 23rd July. Anything posted between today and then will, how you say, disappear.

I suspect that today is Friday, and that means I did chemo about 3 days ago.
And I am tired.
I am tired in a variety of ways you may or may not want to hear about.

See, there is the standard sort of tired I get, from the steroids keeping me awake and all that. I’ve made a bunch of noise about that already and besides, we have adjusted my medication and I am actually getting a bit more sleep this time around.

I’m tired of lots of things.

I’m tired of having to think about cancer every goddamn day, even when I tell myself I am not going to, for just one day, I am not going to think about cancer or mortality or how my life got so completely ass-backwards in a matter of months.

I’m tired of being a special consideration when any event is going to happen. I would give a lot to just be a regular person again.

I’m tired of having these crazy circumstances wear my girlfriend down.
And down, and down.
It sucks when you want so much to make someone happy and all you can see is the stress and the strain you are causing.

I’m tired of being an inverted Pez dispenser, always slamming some new drug combo down my throat and walking around in a stupor.

I’m tired of stressing about how I will make ends meet when my EI claim ends next month and I have to go on welfare.
I guess that’s just more of that humility crap that they think so fondly of in the 12 step programs. Ironic though, no?

I’m tired of wondering whether I feel weird because I have a 10 inch scar on my belly where they ripped my guts out, or if I am tired because of the chemo, or if I am just tired of having to always try to be brave and optimistic and hopeful, in spite of my statistics.

I’m tired of the civil war of hormones going on inside my body, and the way all the parts inside my head crash into each other. I’m tired of wondering whether the inside of my head is mental because some strange man just yanked a bunch of vital parts out, or maybe I am mental because I haven’t taken the time to process what that’s like, or maybe I haven’t taken the time because there was already a chemo needle in my arm and we were off and running on a whole new adventure.
I’m tired about wondering about memory loss and whether it’s starting to happen. I’m tired and I can’t accurately describe what I have already whined about already in this post.

And then when the wonderful world of mental started to seep in again, I got to wonder if it was menopause or the steroids they gave me to make me feel less crappy. But now we can toss in a little estrogen and HRT, if I want, so I can never know what I am thinking or feeling or being pissed off by.

I’m tired of having a life where, often, the high point of my day is walking to the library.
You know, just some small glimmer of independence.

I’m tired of having to be so reliant on my friends and loved ones and wondering and worrying about how I can ever repay the people who have been so kind and attentive.

I’m also more aware of times people in my life have been worn down or tired or just needing some extra help and seeing how I wasn’t always very good at that, so I get to learn something now and try to do it better in the future.

I have every intention of coming out the other side of this as a nicer, more compassionate person.
And I reckon I will.
Just right now I am tired.

And what I am tired of, almost more than anything, is all those fuck-whad lousy dickheads who throw their garbage in my yard for me to clean up.
I mean, when I was a kid, we had littering spanked out of us, and I don’t know who dropped the wooden spoon and razor strop, but geez, to look at my garden, you’d never know anyone ever taught the little buggers that the world is not their personal cess pool.
And an even bigger thanks to the wanker bastards who just dump whole lots of shite in my back alley for me to clean up.
Hey, I don’t mean to be too much of a sissy here, but I have no goddamn immune system. Much as I would otherwise be delighted to clean up after you, because who wouldn’t, you are putting my health at risk by being such a lazy little wanker bastard.

Still, in spite of my platinum grade whining here today, I have the chance to spend a day or so on Galiano, if all that works out.
And I may be able to go kaykaying on Bowen Island with the big angry, mod, fag-tease.
And, the truth of it is, I have been having a major craving to be back at Tofino, or maybe up around Quadra Island.
I love the North Island a huge amount.
And the last trip home from Tofino was all shadowed in the ‘oh-shit, what’s going to happen with this surgery.’
So, we had a vacation, but it seems so long ago now. The welcome home bubble burst kinda quickly.
Maybe with any luck, we can get up to some wild chunk of ocean when all these treatments are finally said and done, in the winter/Xmas/New Year’s time.
That’s my big hope.

And the biggest irony, for me, is I had such a totally phuqued summer last year. All I really really wanted was for this summer to get great and sweet and relaxing. Just a regular little human drill… go to work, hang out with friends and loved ones and lover-girrl and make some fud with folks and lay around and laugh.
I had it all planned out.
It was my cosmic compensation for how shitty last summer was.
Imagine my surprise. Shit.

And believe it or not, I miss working and having a sense of purpose that was more involved and more connected with the world than walking to the drusgstore and getting my prescriptions refilled or ‘golly are we out of soymilk?’.

Gabor Mate says, in his book, When The Body Says No, that one of the contributing factors to who gets cancer and who doesn’t is…. anger.

So, thanks, Gabor, tonight I am angry.

And that feels like a good direction to be taking it in.
At least for the time being.
Now I just need to figure how to live with it and arrange it in ways that are appropriate and not just crab around and make everyone around me sad or spooked.

Luckily I have lots of time to work out my strategy.

I keep yammering on about how great people are being to me and Elaine, and here’s a plug for a guy who has been a really great, reliable mechanic for me for quite some time.

I was really lucky that I got connected up again with a former co-worker who also does really good repair work on cars. He brought Elaine’s van back from the dead and for less than we expected.

My buddy Brian is working his regular job during the day and doing car repair in the evening, plus raising a family and all that jazz.
Brian says he would be into doing more repair work so here I am giving him a plug.
I bet his wife would prefer I don’t just put their phone number up on the internet. But I will gather up the contact info and put it up here or somewhere and let folks know about it.
In the meantime, if you are local and need some repair work, drop me and e-mail and I will try to hook you up.