Jun 072004
 

It’s been a whole week since my first chemo treatment, (and, I am happy to say, two whole weeks till my next treatment) and I seem to have made it thru the roughest part of the ride. For this round of treatment.

The last week has been really strange and unpredictable for me.
I feel like a whole lot of my energy went into wondering what might happen next. There were days when I would alternate between feeling fine and feeling bad every half hour. And then, as the week progressed, I felt worse and worse, until finally it broke and I started to feel fairly human yesterday.
So, that’s been kind of strange.

I spent a lot of time medicating myself, either with some sort of pain killer so I could feel a bit better, or with some sort of anti-nausea medication, or, more often, a combination. I would then try to make a mental note of what helped and what didn’t.

Yesterday, Sunday, was the first time I felt okay in a week.
And really, in the greater scheme of things, a week isn’t very long to feel sick. A bad flu can take you down for longer than that. And it’s easier now that I know I won’t feel *that* bad every day for the next 6 months, because I wasn’t really sure about that for a while.

Also, yesterday, a few friends came over and we shaved our heads and stuff.
It was really good.
But you are going to have to wait till tomorrow to hear the rest of those details, because it’s late and I had a big day (and I even left the house!)

In the meantime, if you are missing the old, wild,
high-flying Spike, go here.

More later.

 Posted by at 11:45 pm
Jun 072004
 

Yesterday, Spike got hungry. And ate.

Now, maybe it seems like a pretty simple thing to all you guys, but what with the surgery, the chemo, and all the other stuff, Spike ain’t been eating much, or feeling like eating at all. I’d been contenting myself with small triumphs — a wee bowl of cream of wheat here, a smashed (organic, pesticide-free) fruit smoothie there…

I never really understood how very, very worried I’ve been this week… until I saw Spike toddle into the kitchen and say “And a salad! Let’s make a salad to go with that roasted (free-range organic) chicken and potatoes! Yum.” (after she’d already had breakfast, snacks, and a cup of miso soup earlier) and I felt this tension release inside me like a rubber band snapping.

I hadn’t realized that I’d been kinda holding my breath…

-Elaine

 Posted by at 12:41 pm
Jun 042004
 

Well, here it is Friday and I thought I should let people know what’s up.
Mostly there isn’t a whole lot to say except chemotherapy totally sucks.
It’s like having the worst hangover of your life for 5 days straight. Actually, that doesn’t really do it justice and besides, I have no idea how many days it will suck for. But so far I can’t recommend it as any kind of party drug.

Monday I had my mega-dose of chemo and Monday night wasn’t too bad.
Tuesday was kind of okay but I was starting to go on a bit of a slide.
Wednesday I came off the steriods that they give me to make me feel okay and I started to crash quite a bit.
Yesterday, Thursday, was rough. Today I feel like I am starting to climb out of the great big pit of feeling lousy.

I do have to say that people have been totally fabulous to me and to Elaine and I sit and cry about that at least 3 times a day.
Fuckers..
You are all fuckers for making me cry.
Fucking fuckers.
And thanks.
Everything that everyone is doing and all the support being are giving us really make a huge difference and I have been blown away by how many people have just jumped in and helped. Shit, there are people being sweet to us that I have never met.

Anyway… it’s been a week.
I am hopeful that I am starting to slide up into a higher level of feeling better. It’s all uncharted waters right now, but I am feeling better today than I did yesterday, and I am happy about that.

I know it’s going to be a long, hard ride.
It matters a lot that people are being so kind. It matters a lot that people are doing what they can to help.

Sunday I get my head shaved and a few friends are coming by to shed their butchly and/or manly locks as well.
See, *that’s* support.

Anyway, the Little Woman is gonna feed me some grub here soon, so I am gonna wander.

Lots of people have e-mailed and I haven’t had time to answer everyone. Sorry about that. I am doing what I can, when I can, and I seem to be falling behind.
I do like hearing from folks, so please stay in touch.

 Posted by at 6:11 pm
Jun 032004
 

This is a very interesting link, detailing some pre-human-trial breakthroughs they’re coming up with, as a treatment for cancer.

http://www.newscientist.com/news/news.jsp?id=ns99995056

Although the media bombards us daily with screaming headlines of bad news until we’re all sure the world is going to hell in a handbasket, it’s good to be reminded about one of the categories of stuff that doesn’t sell newspapers — the amazing things we gain through science.

Frankenstein’s monster bedamned — I’m all for knowledge.

-E

 Posted by at 1:07 pm
Jun 022004
 

It’s a bit insane for me to be sitting here posting to the blog again today, but it seems kind of important to me, otherwise I would be laying down sleeping or reading or something.

I wanted to share a thing that happened today, and maybe I’m still trying to digest it.

See, we went to see my GP today. She’s been off on holidays for the last 6 weeks and so when I last saw her, we knew I had a tumour but that was all. The strong belief was that it was endometriosis, it really did seem way more likely. And we knew I had to talk to a groin ecologist but no appointment had been made.
A lot has happened since that time.
Now, the thing you need to understand is, I really like my GP. She is a really nice, sincere woman. I have always felt like she listened to me and cared how I was and she has never treated me like some goofy stupid patient.
And, I have dealt with a lot of medical staff in the last 6 weeks and they have all been pretty decent, but it’s nice to just have an easy, long standing communication with someone.
So, me and Elaine are sitting at the doctor’s office and my GP comes and gets us so we can catch up on what’s what. And as we walked down the hallway to her office, I just started to cry cuz it became really clear how much stuff has happened to me in the last 6 weeks and it hasn’t really slowed down, and I just had a little sob in the hallway of the doctor’s office, which, if you don’t know me, is about as likely as pigs flying.
But that wasn’t what I wanted to tell you about.
It’s actually even freakier than that.

We were sitting there and Pat, my doctor, was looking thru my file and we were asking her questions and stuff and it was pretty good. And I don’t recall exactly how we got there, but she looked down at my file and she said that the original tumour, the thing that started it all, the one that showed up on the ultrasound, she said it was benign.
So, it seems they cut me open for a benign tumour and fell upon a whole whack of badness in other places.
And there is something about that that I find just so completely freaky.
As Elaine said, it’s sort of like someone tripping you in a crosswalk and they inadvertently knock you out of the way of a bus that was about to cream your sorry ass.
See, I just don’t know how to process that piece of information. Because really, if it hadn’t been for the benign tumour, I would still be walking around with a pelvis full of cancer.
It’s pretty strange to process.
And as we sat there, all more than a little bit stunned, Pat looked at me and said, “so, what I am saying here, Spike, is that your partner saved your life”
and then we got a bit weepy again.

You know, I know Elaine is spectacular and I know it better than anyone else knows it. I get kind of bored with how lots of people think they know how spectacular she is, when really they don’t. They see some little snippet of who she is and they put her on a little pedestal and I roll my eyes a fairly huge amount because I think that stuff is a bit ridiculous. (I can say these things because I have cancer.)
But I have always known she is incredible.
And I am still trying to wade through the enormity of her really quite literally saving my life.
I guess I gotta get busy getting better so I can try to pay her back.

 Posted by at 11:49 pm
Jun 022004
 

A bunch of stuff has happened and I haven’t really had the time or the energy to post anything here, so I will try to fix that now.

First, a wee report on the joys of chemotherapy.

Well, it just pretty much sucks, really, but as a woman I have been talking to pointed out, it beats the alternative.

We got to the BCCA and they took me to the room where I would get my treatment. It’s basically a regular hospital room, like on a ward.
When I had had an initial meeting a few weeks ago with one of the nurses who is overseeing the research project , she said that they usually set it up so you have a room to yourself for your first treatment.
So, I was a bit stunned to walk into the room and see two other people with IV bags in their arms.
And I froze, like a dog not wanting to get into/out of the car.
Whoa… hold it right there… This isn’t okay… I am the private room freak, whatever the expense. But it didn’t work that way. It was a bit weird at first but then I ended up having other things on my mind.

It is kind of funny when they set you up for your chemo treatment because they make you spell your first and last name for them and rattle off a bunch of other personal information, sort of like when the pharmacist confirms your address when they give you your prescription.
But it was funny when the nurse wanted me to confirm all that because Elaine started making jokes about people sneaking in and impersonating other people to get a few extra chemo treatments.
I mean, you’d only have to be there for a few minutes to realize that these chemo drugs aren’t the target of a lot of drug seeking behaviours.

Other people in my room had their treatments in shorter periods of time than me, so quite a few people came and went while we sat there. We arrived at 11 am and went home around 5:30 or so.
At one point, I had a medium sized reaction to the drug and they had to stop the IV and give me some Gravol because I was getting pretty sweaty and feeling pretty grim. Luckily Elaine came to my rescue when she saw I was starting to wander off in a wrong direction.

It is very strange to have so much fluid draining into your body over that period of time. At a certain point I could feel the skin in my elbow had gone cold from the cold liquid pumping into my system. They cover my arm up with a little heating pad to make that less drastic, but sometimes it gets annoying to only have one hand.
At some points, my vein went into spasm from the drugs and that hurt quite a bit. I don’t know if there is anything that can be done about that. I did remark that I am much more fond of the morphine drip, and that the morphine doesn’t hurt going in, not one bit. This comment did not secure me a bag of morphine, sad but true.

And that was Monday and today is Wednesday, and the fact of the matter is that the killing spree continues inside my body today and I have no idea how I will feel in a half hour. Sometimes I feel really good and sometimes I just feel like crap. And it really does seem to change really quickly. That makes it kind of hard to plan, and I know people have been wanting to check in and stuff, and I wish I could lay something out with a more solid chunk of information, but right now, everything changes in a heartbeat.
Sometimes I feel pretty dizzy, and then it gets better.
My voice has gone kind of weird and a bit higher pitched.
My ability to form a sentence or express an idea is sort of wobbly too.
My bones ache some times, and sometimes they are fine.
The nurses and doctors say that I should expect to be constipated and also expect to have the green apple quick-step.
It’s sort of a collision course inside my body right now.
I am trying to frame it in a Harry Potter versus Voldemort kind of way but sometimes I come up with other analogies.

We have had to implement the Reverse Quarantine act at chez nous.
Have I already mentioned all this? The stuff about don’t come over if you are sick, have been around someone who is sick, or if you are just recovering from being sick.
Also, to reduce the numbers of germies and stuff coming in our home, we are asking folks to wash their hands when they come into the house, just to help lessen the number of little critters coming our way.
I realize it seems like a bit much but it really is important. the bottom line is, I basically have next to no immune system, and if I get exposed to something, I don’t have many little soldier blood cells to fight it off because they are being beaten to bits by the chemo drugs. If I *do* get sick, they may have to delay a chemo treatment, and much as I don’t enjoy it, if the treatments get delayed, it gives the cancer more time to take root again, and we don’t want that.
So it’s a totally weird and difficult process but I need to do it and I need to do it the way they have it set up.

So now it’s been about 48 hours since the first treatment and I am just trying to figure out what I can and can’t do. It’s sort of strange to be so vigilant about everything my body is doing. I am also taking a lot of gravol, and I have been taking some steroids because they help make me feel better (though they also mean I can’t sleep). I’ve been taking some anti-nausea pills and basically I have been eating as much as regular and maybe more.
One thing I have noticed is the chemo drugs are making my body sweat out some rather vulgar smells. Elaine says she can’t smell it, but I am constantly trying to figure out where the bad smell is coming from, and then I realize it’s me. That pretty much sucks. I have no idea whether it will taper off in a week or if I am going to stink for 6 months.
I’m hoping that this 3 week chemo cycle will work out so I don’t feel too bad in the week before the next treatment because my body has started building up new blood cells and all.
It’s all a huge unknown to me right now, and that is sometimes more stressful that the stuff that is actually happening in my body.

Oh, and I still have my hair, but it’s getting shaved off on Saturday.
I don’t want to deal with the ongoing horror of looking down and seeing it, so off it comes.
I confess, I am vain enough that I resent the lack of choice with the bald thing, but it’s the better one of my choices. I suspect my little glittering skull will be covered most of the time, but I still find it weird that I will be announcing ‘my illness’ to the world every time I am around someone.
Oh well… what are you gonna do, eh?

I’m sure that there is plenty more to tell, but I think I have run out of steam for this particular entry.

More as it happens, comrades.

 Posted by at 5:19 pm
Jun 012004
 

Well, I had my first good old chemo appt today.

There’s a lot I could say about it.
I don’t even know where to start.

It’s pretty late and they told me I might have trouble sleeping tonight because of one of the drugs they gave me.

Here is one of the things that has happened to me over the last month that is really annoying to me… I’ve become one of those people who has this drug to suppress one problem, but I have to take this other drug to off-set the side effects of drug #1.
I think I am going to have to celebrate with a week at Detox when this is all over.
So, tonight I am pumped up on steroids that mask how lousy I really feel and then there is some gravol on top of that, which masks some other aspect of how I really feel. And then there is a medication that deals with any potential allergic reaction, which is making me drowsy and slamming into the steroid that is keeping me awake. I told Elaine I am having myself a chemo speedball. I think the original formula is a better product from a marketing angle.

I found out how good a job the gravol does when I sort of slid down in the feeling good department and started to get a bit sweaty during the chemo.
Elaine was chatting with the nurse pretty quick and she slid me a flap of Gravol and I perked up instantly.

Anyway, my day in chemo…

It wasn’t what I imagined, but it was okay.
My hair hasn’t fallen out yet, in case anyone was thinking it might work that fast, but I expect the big head shaving will happen sometime this weekend, depending on how I feel. (The standard hair loss pattern is that it starts to go sometime within 2 weeks and I don’t want to look like a moulting bird.)
Fellow head-shavers are more than welcome to let me know what day works better for them. (A couple of folks have said they will shave their heads in solidarity, which I think is so incredibly sweet, I don’t have words for it.)

I think I will wrap this up now and fill in some detail sometime soon.
I know that there are people out there who are wondering how it all went.
And my answer is, it was hard and unpleasant and kind of awful at a couple of points, but it okay too. I knew it was going to be hard, and it was.
Right now, I feel like I just made it to the top of that first hill on the roller coaster at the PNE…. and now we have to hang on for the ride.

 Posted by at 3:44 am
May 312004
 

Okay, folks,

In just a couple of hours, me and the woman are gonna be headed off to the BCCA and then I am gonna spend a few hours on the sharp end of a needle.

So, here’s the thing… I have no idea how this is going to feel or how I am going to feel or any of it. The word on the street is, everyone is different when it comes to how they react to chemo. So, I just don’t know.

Please be patient with us if we don’t respond to phone calls or e-mails very quickly. Well, neither of us have ever been good with that stuff, but expect us to be worse than normal and maybe you won’t be disappointed.

I have no idea whether I will be able to handle visitors today, or tomorrow or a few weeks from now. I am going to have to take everything as it comes from now on. And yeah, the Reverse Quarantine is in effect at our place now. If you are sick, have just been sick, or were just with someone who was sick, please use the phone to visit with us. Please try to remember that my immune system is in a wrestling match with Voldemort and I am not going to be able to fight off that cold you are almost over. Please don’t be offended if you show up on our doorstep and we say can’t visit right now.

So, that’s all for now. I am going to go spend a bit of ‘quality time’ with Elaine before we get all hooked up to some spooky juice and wake up bald.

Roger Dodger.
Over and out.

 Posted by at 9:18 am
May 302004
 

So, you know that blue-green algae stuff: Spirulina?

We take ‘em as vitamins. I ain’t complaining about pill-taking for once, because Spike worries about me worrying about her, and thinks it’ll make me sick if I don’t keep my immune system working fine — which is completely true. Sigh.

So. Vitamins. Gah.

Spike gave me a few to take this morning, and I left them on the couch for a second while I went in search of bread to take ‘em with. (Yes, ordinary folks take pills with water. I take ‘em with dry bread or crackers. )

When I came back, Dayton the cat was happily chewing up the last one. Who knew any vertebrate would enjoy the taste of spermalina? Blechh. And again. Bleghhh.

Me’n Spike are fervently hoping they won’t make him barf blue-green all over the house.

-Elaine

 Posted by at 12:19 pm
May 302004
 

safe_shopper.gif

One of the things Elaine and I have been doing lately is eating more organically/less toxic-ly.
Given that we aren’t members of the Trump family, we are having to do this in a well thought out sort of way and we haven’t just done a grocery clearcut in our cupboards.
We’ve been using this book a whole lot. It’s really good and the authors seem to understand that not everyone can afford or has access to organics, so they tell you how to minimize the risks of commercial foods and produce.
It’s good.
And yeah, pretty much every major drugstore brand of toothpaste is rated as carcinogenic. My personal favorite for healthfud store toothpaste was the Xylifresh Peppermint, but I haven’t seen it in years.
Looks like we are going to have to go shopping for some Tom’s of Finland toothpaste.

Oh! And the much anticipated Tattoo Convention is today.
I have had a variety of opinions about whether I should or shouldn’t get a tattoo right now.
I really, really, really wanted to get a tattoo before I started chemo.
Let me clarify that…
I had really wanted a tattoo, particularly because this convention gives me some rare opportunities for access to artists I’ll probably never see again.
And, I think the next 6 months are going to be a bit of a challenge, and I wanted something visual to refer to when things were hard.
But it’s been pointed out to me that my immune system is going to be working overtime just to get right with the chemo. Throwing a tattoo on top of all that is asking a bit much.
That’s what lots of wise folks have said.
So, I have a couple of earrings that I received for a birthday present, and hopefully I will be able to get those in one of my ears soon because I need them to work out my pirate look. You know, big old bandana around my head and a couple of big surgical steel earrings on one side… whaddaya think?

Anyway, we are off to the tattoo show today. To look rather than be poked in any way. Maybe I can get a t-shirt…

And then tomorrow… off we go to the chemo. Where I will undoubtedly get poked and no, I don’t want a t-shirt.

Wow… the things that jump up and bite you in the ass when you aren’t paying attention.

Roger Dodger, over and out.

 Posted by at 11:12 am
May 282004
 

Just a wee message to let folks know I start chemo on Monday, not Tuesday.

Dang…
I am easily confused.

I probably won’t be feeling like having company right after the chemo.
I’ll post here and let people know how it’s going, and when the head-shaving party is going to be (sometime in the first 2 weeks of June, I expect). Don’t be afraid to go bald this summer, I intend to make it the new fashion standard.

Oh, and the other piece of news is that my alt-alien silver bullet second belly button is actually healing up quite well and is now about the size of a button hole. That’s pretty good news because last week, Daktari was saying it could take a month to heal up and that could be slowed even more because of the chemo. It looks like it will be well on its way to being just about done with the healing by Monday.
And let me just say, I am completely fine with that process coming to an end. Not to whine and belly-ache too much, but it’s started to become more than a little annoying. See, I seem to have a bit of contact dermatitis from all the tape that has been slapped on my belly over the last month. I now experience pangs of itchiness that are really quite maddening. It’s really been high on the list of Spike’s unpleasant experiences of late. I seem to be having one of those grumpy days…

Anyway, on an up note, the tattoo convention is this weekend, and even though I can’t get a tattoo, we are going to go and have a look.
I’ve been pretty excited about that for a while so it’s great that it’s finally happening.

Okay, comrades, I gotta run off to another doctor’s appt.

See you in the movies.

 Posted by at 10:50 am
May 272004
 

Okay folks… here’s the poop.

I start chemo next Tuesday, June 1st. And once I start chemo, we will be implementing the Reverse Quarantine procedures at chez nous. That means if you are sick, have been around someone who is sick or just feel like you might be sick, we are going to have to limit our contact with you to the dreaded telephone, because I can’t afford to pick up any bugs while I am doing chemo. As one woman who is doing chemo explained to me, “you will have the immune system of a baked potato.”
Nice…

Anyway, before everything gets governed by the great big chemo needle, we thought we would have one little low-key, drop by if you feel like it get together and let people just come by in a loose and easy sort of way.
So, if folks want to squeeze in one last visit before we go into lock-down procedures, please come on by…

I expect folks can come by between 2 pm and 5 pm on Saturday the 29th.
We won’t be doing anything fancy like feeding people, but we will try to make as many pots of tea or coffee as people need to quench themselves. I expect we will have a supply of some sorts of cold drinks as well and who knows if Elaine might find time to bake. If you want something in particular to drink, you may want to bring it yourself.

If you don’t know where we live, just drop me or the Little Woman an e-mail. I am off the morphine so I am not stupid enough to post my home address on the internet for any old wanker to retrieve. I am only interested in entertaining the wankers that I know.

Okay comrades… see you Saturday.

 Posted by at 3:04 am
May 242004
 

The last few days have been relatively normal and kind of quiet.
I guess if I was really normal, I’d still be working and that would make me all happy and enthusiastic about this long weekend everyone is enjoying.
It is nice to have more access to my friends these last few days.

On some level, it feels like the countdown to the chemo and like I am under a lot of (self-inflicted) pressure to have as much fun as possible while I can.
The extra belly button is a bit of an obstacle in fun land, as is the fact that I still don’t know if the government is going to accept my claim for a medical leave.
So, outside it’s a spectacular spring day, and I am not quite sure what I will end up doing, because so many things get ruled out because I can’t do them or I can’t afford to do them.
(Err, okay.. people have been really sweet and generous and it seems like if I mention being in need of anything, it miraculously shows up on my doorstep. So hear me when I say, I am not cyber-panhandling. I am just talking about the frustrations of being a tiny speck in yet another great big system that may or may not do what I want.)

It’s kind of amazing to me how much I wanted to be in the test group for this chemo study. I think I was much more tolerant of all the frustrating bits before I heard that I was in the control group. And since I found out I am in the control group, I find myself feeling kind of sullen and grumpy and like screaming, “hey! That’s not good enough, okay! How about we get our shit together here because I am so not excited about getting the second prize in chemotherapy!”
I guess I am having my Dylan Thomas “do not go gentle…” moments.

So, I confess, I have been a bit crabby lately.
If you drop by the house, I don’t think you’ll notice. I think only Elaine sees it, that’s the wonderful thing about a long term relationship, ain’t it?
But I do seem to be getting into my cranky days.
But that’s okay… gotta get this stuff on the outside, right?
If you keep it bottled up, it can kill you.
Besides, I keep being told that grumpy people survive chemo better than regular people. I have noticed that it’s always grumpy people who say that, oddly enough.

So, yeah, I am disappointed that I will be in the control group, I can’t quite shake the feeling. It just feels like I am being sold short when there is something else out there that could make all the difference.
Now, I understand that they have to test drugs for a reason and we shouldn’t just put our blind faith in the drug companies and there are lots and lots of examples of things going horribly wrong when people jumped the gun on that score. That’s what I know mentally.

I was thinking yesterday about how I am just blindly doing what the doctors say I should do and how I have always poo po’ed chemotherapy and radiation, because they don’t seem to have very good success rates and also because exposing your poor battered body to a tanker load of poison doesn’t make sense to me.
I said all that stuff, before I ended up here.
And now I am gobbling up the whole package, hook, line and sinker.

All I can say about that is that things seem really different when it is a real decision that one has to make.
So, yeah, I am doing this in a way that is completely different than how I ever would have imagined, and I am okay with it. Just in case anyone wondered whether I had given this much thought. Yeah, I have.

Oh, and here is a request…
Like I mentioned, people have been so sweet and generous… it’s amazing.
And I understand that some folks feel better if they bring something. And while we are pretty well-stocked at this point in time, it’s nice that people still ask if they can bring stuff.
But I have to ask that we have a candy moratorium.
I have a huge amount of candy. Tons of candy. All yummy and delicious candy, but I think I am now at my candy quota.

Okay, I have to go watch my friend push the lawn mower around my yard.
I’m going to try to enjoy that, maybe bring along a glass of raspberry lemonade or something.

More as it happens.

 Posted by at 11:34 am
May 222004
 

So, the nurses and doctors don’t work weekends, especially not long weekends, and I’ve just become the official Spike wound-care-at-home expert.
I’ve been furnished with tools and tape and gauze and strips of sterile “wound packing material” and sterile water and a squirty syringe.

It’s my job to let Spike go “ouchy ouchy” and peel off the tape from the last bandage change (cos she likes it better if she does it herself), and then I make like a power-washer with a teeny-tiny pressure hose in Spike’s open wound thing(which is 1 inch deep, for those who like to wince) and then (maintaining a sterile field) carefully cram as much stuffing strip as possible into all the crevasses of her little 2nd belly button (about a foot of strip, for the morbidly curious) and then cover it with sterile gauze, tape that down, and then finish up with a self-stickum post-surgical pad (kind of a tremendous bandaid).

Every three or so days, we go back to the doctor for a professional wound-stuffing.

The doctor says it may take a month or more for this to close up, so I’m betting that Spike is going to despise the sight of me and my little tools, bottles, and pads before we’re done. I’m going to haul out my Cirque Du Soleil clown nose and try wearing that on alternate stuffings. For variety, y’understand.

-Elaine

 Posted by at 2:46 pm