Something Evil This Way Comes

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.

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.

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

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.

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.

well, the Cancer Agency called today to tell me that, somewhere in the world, someone pushed a button and ‘randomized’ me for this study and it turns out I will be in the control group.
And I guess I am a bit disappointed about that but I am trying to remember that I am still in the study and they will still be watching my every move and every move every one of my cells makes and all. I just won’t get the new drug(s) and I won’t do chemo those extra 4 days on the chemo weeks.
It’s not like they are going to give me some second rate drugs or anything.

So, that’s that.
I had a moment of insomnia so I thought I would take a sec and let people know.
More as i?we figure it.

Yeah, I second everything Spike said.

Except she forgot to mention that, even though I had some advance warning from little fairies that such a thing might happen, when Spike called me into the kitchen and looked at me in awe and glee, holding the tickets in her delighted little hands, I burst into tears.

If I ever had any tough and cool points, I’m losing ‘em fast.

Thanks, little fairies.

-Elaine