It was only a couple of months ago, but hey…
I keep meaning to add the photos from our most recent trip to Tofino to the gallery page, but I always seem to be too busy having some sort of terrible hormonal episode or not sleeping.
In the meantime, here’s a wee bit of the trip.
Was I having a good hair day or what?
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:
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.
just a quick note to say my e-mail has been down for a day or so. If you e-mailed me in the last 2 or 3 days, please resend it.
I never got it and it is lost in the ozone.
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 just want to say that hormone replacement therapy is like a day-pass into the land of mental illness.
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.
So I was musing through the blog this evening, and re-followed Spike’s link to our little head-shaving party for her.
Damn, will you lookit how many folks have stared at those pictures, in comparison to the others. It’s like they’re butch pornography or something.
Maybe they are.
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.
I did my third chemo treatment today. Right now, everything is pretty a-okay. But it remains to be seen how it will all unfold. Last round my biggest problem was insomnia and getting kind of cranky after a good long time of no real deep sleep. One good thing about being in this drug study is I see the doctor and a nurse the day before each chemo treatment and we talk about how the last round was and what needs to be different. They are pretty attentive and things get adjusted and improved as we go. So, now we are going to see if we can’t get some sleep happening for me. That would be pretty great, I’d like that.
While we were meeting with them, we got some test results from last time.
All my blood work is coming back with good results.
My red blood cells and my white blood cells and my platelets are all on the low end of the normal range so that’s good.
But the thing that is really super exciting is the thing they call CA 125
CA 125 is a tumour marker test.
Basically, it is an indicator of cancer in your body, and it is as close to a test for ovarian cancer as they have right now. (But there is no test and it isn’t accurate enough to be used as as test, but it is as good as it gets for right now.)
So, if you, gentle cancer-free reader, had the CA 125 test today, your score would likely come in at around 20 or less.
When they tested me before my surgery, my test results were around 150 (and I have heard of lots of people having way higher numbers than that, so I was lucky.)
After my surgery but before my first chemo my scores came back at around 65.
After one or two rounds of chemo (I’m not completely sure which blood test they were using when they gave me the results) my CA 125 count is 8.6
That’s really fucking good.
I can’t express how uplifting that is.
And yeah, we aren’t out of the woods yet, but it’s really good to know that things are working and we are moving in the right direction.
Some people don’t respond at all to the chemo drugs so they go thru this basically brutal process and get no good out of it and then they have to go start with some other combination of chemo drugs and hope that they work. I am happy to report that isn’t happening with me, and things are looking really good!
And I completely expect that those numbers will fluctuate a bit, but as long as that fluctuation stays within a reasonable range, that will be okay.
I confess, there was a lot of gleeful bouncing up and down as we came home from that appointment.
So, there you have it. Some good news.
And, a big thanks to all the folks who came by and visited with us on Sunday. It was a really nice day with some really nice people hanging out. Thanks.
Hope you are all having a lovely summer.
Most people know by now that this round of chemo was a long drawn out process of no sleep and all the dementia that comes with not sleeping much for almost 2 weeks.
One of the things that happened as a result of that is I haven’t had as much contact with people. Last round I was being much more social in the 3rd week of the process.
I was chatting with Elaine today and we thought perhaps we should just let folks drop by and visit with us and we can see lots of people before I go back into the next chemo cycle.
So, that’s what we would like to do, have people over on Sunday afternoon, in a casual drop in kind of way, from 1- 4 pm-ish.
If you’d like to come by on Sunday, that would be cool.
The same old rules apply about being ill, which is, if you are ill, we will have to catch up with you some other time, because I have no immune system so I can’t fight off any germs you bring to our home.
I’m sure we will make tea and coffee and have some cold things to drink. Should be a nice day, I think.
If you need directions, drop me an e-mail.
On other fronts, I seem to have come out of the woods from round 2.
I am now in the preliminary stages for round 3 because I had to go for more bloodwork today.
And I will go for more bloodwork next Monday, and then do the chemo again on Tuesday.
Basically, they check my blood as of today to make sure everything is okay and I am not sick or too run down, and then they do it again the day before the treatment, and assuming everything comes up okay, then we do another round of chemo.
Lather, rinse, repeat x 8.
I confess that I am feeling like I didn’t get much time between treatments this time. I think I have to start making the most of it now, because I was really tired and cranky for so long this last time that I end up having a smaller window in which to have some fun.
I definitely have to get them to adjust my meds so I can get some sleep this next time. It was getting a bit insane going ten days with no more than an hours sleep at a time.
Okay… it’s a beautiful day and I am going to go do something.
See some of you soon.
Seems like I ought to catch people up on what’s what and all.
So, it’s true, yesterday was the 6 month anniversary of me quitting smoking.
And what an interesting 6 months it’s been.
Still, I am glad I am not smoking now, and I am really glad I am not in the middle of quitting now. And Elaine is ever so sweet for saying I am her hero.
Personally, I just think it would look really bad if I started smoking again now. I think people might have a hard time with that.
It’s been almost 2 weeks since my second chemo treatment and this round has been pretty different than the first.
They changed my meds a bit so I never got anywhere near as sick as I did the first time, but I also seem to have ended up feeling kind of crappy for way longer. It’s like I had to feel a particular amount of lousiness after each chemo treatment and the first time I got really sick and stayed that way for a week and that was that. This time it’s been almost 2 weeks and I am just about starting to feel regular.
Part of what is different is the fact that I ended up going about 12 days with next to no sleep. The steroids they give me to make me feel okay-ish keep me awake. There’s no surprise there, they told me going into it that I would be awake and kind of manic from the steroids. I don’t feel really manic, but I haven’t really been able to sleep in a really long time.
I think I just turned the corner on that one, that’s my hope.
I think Elaine deserves a big medal for putting up with my grumpy old self for the last 2 weeks.
The other fun stuff I get to experience because of the steroids…
I seem to have a bit of acne…
Hey… how fun is that?
And, they make my voice go squeaky.
And my face is now almost perfectly circular.
And I have the appetite of a 16 year old boy.
And I am guessing I won’t be able to compete at the 2010 Olympics because of all this, and that’s just a great big drag.
That’s the poop on Chemo- Round 2
I thought I had it kind of mapped out, after round 1, but it seems I was mistaken.
I am hopeful that I can now start getting some regular sleep and then I will start to feel better and then I can enjoy the next 10 days, before I roll up my sleeve and start all over again.
I hope you are all enjoying this festive long weekend.
Oh… and I seem to have lost a bunch of e-mail a couple of days ago. It all got gobbled up at the server level and now it’s just a bunch of stray letters and stuff, floating in space.
If you wrote me in the few days and I haven’t answered you, this could be the explanation.
Or it could be another explanation altogether.
Anyway, if you did write me and you haven’t heard back from me, please feel free to resend.
That would be cool.