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.


 Posted by at 12:19 pm
May 302004


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.

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.”

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.


 Posted by at 2:46 pm
May 222004

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.

 Posted by at 4:42 am
May 192004

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.


 Posted by at 6:04 pm
May 192004

Holy mackerel….

So today I was yammering away on the phone, chatting with a friend as I got dressed for yet another doctor’s appointment. I wandered into the kitchen with the phone and noticed an envelope taped to the door. It was addressed to Elaine and me and so I opened it and found inside 2 tickets to tomorrow night’s Cirque de Soleil show.
I heard a rumour that many of my little friends were involved in this and I want to say a great big huge thank you.
I love the Cirque de Soleil. It was the high point of my summer last year getting to see that show.
Thanks, everyone.
That was spectacular.

You know, I don’t want to get to Hallmark card-ish here, but people have been so wonderful to me and Elaine since this whole thing happened, and we really appreciate it. I think we have a really good thing going here, living here and having the friends and loved ones that we do. I think we are awfully lucky.

And thanks to all the folks who offered to help with my t-shirt importing problem. I have that nailed now, so thanks everyone.
And thanks to everyone who brought me chocolate soy milk, and who gave us info on organic spuds.
And who offered to drive me to my chemo appointments (we’ll know more about that on Friday, so we’ll be in touch or something).
You guys have been great.
I feel awfully lucky.

Stay tuned and I promise to tell you all how great the Cirque de Soleil show is.

 Posted by at 1:00 pm
May 182004

Yeah… it’s true, like the Little Woman said. I have an extra belly-button.
That was vulgar. I did sit up and accidently see it and that was bad.
Bad, bad, bad.

But enough about that.

It’s a beautiful sunny day. People are jogging past my house, people are roller-blading past my house. I have a lot of things I wish I could do in my yard, but I can’t.
That sucks, it totally sucks.
But enough belly-aching.

The story of the extra hole in my belly is this…
The staples came out just fine, the wound was healing really nicely.
I’d been out of the hospital for almost a week and everyone said it would be fine if I took a shower.
So, I took a shower.
And when I got out, the wound was leaking a little bit, but we didn’t think much of that. And it continued to leak, so we covered it in a sterile dressing and did the stuff we had to do.
I took the dressing off before bed, and woke up the next morning to the clear fact that the wound was still oozing.
And luckily, I had an appointment with my GP yesterday, just to catch her up on the overall picture, so I had her look at it.
She thought it looked fine, maybe just a little infected, until her hand when “poot” through my skin and into my belly.
I’ll just give you a minute to conjure up some other image to have in your head for a while.
Anyhow, so now I am packed full of sterile gauze.
I will spend every day sitting in a doctor’s office getting the gauze changed.

And I am amazed how I was uprooted from my simple and relatively happy little life.
It’s like I was a happy little speck in a great big universe, and that was all fine, and then one day, I wandered too close to a vent that sucked me into the medical world, and now I have to stay here until I can swim against the current and get out. Sort of Finding Nemo-ish, that’s how it feels.
Which is probably better than pulling out the San Quentin analogies.
I’m sure those will come when they turn me into the human pin cushion.

An update on that, the chemo schedule….

okay, I have learned that the timing of everything and anything in the medical world is tentative and could change in a heartbeat. People I have dealt with are spectularly skilled at dodging anything that could seem like a solid commitment. It’s really quite amazing.
Yesterday, the nurse at the cancer agency taught us the all-purpose answer to anything, which is, “well, yes and no.”
So, with that said, here is the chemo scheduling update, which could change on Friday or any other time if my chemo doctor thinks it should change.

After looking at it this way and that and talking to Elaine about the pros and cons of this and that, I decided to do agree to participate in the new drug test.
Here’s why:

– we don’t know yet whether I will be in the control group or the study group but we do know that either way they will be studying my bloodwork and test results an awful lot. I figure in 4 months I will rue the day I thought that extra attention would be a good thing, but today I think it is.

– They have already done a preliminary round of tests with this new drug combo and the results were promising and now they are testing in on a much larger group of people.

– Maybe I am just willing to hedge my bets, but it *feels* like the right thing to do. I realize this may be incredibly naive on my part, and I have certainly spent a whole big chunk of my life being skeptical of the medical industry and who decides what and how people are treated in that process.
Today I feel a bit differently.
I’ve spent a bit of time sitting and chatting with these folks who work at the Cancer Agency and they seem like nice, committed people.
I mentioned to one of the nurses that I had heard that lots of oncology professionals wouldn’t do chemo themselves or let any of their loved ones do it.
She told me about a relative of hers who had done chemo and how that had gone. She said that she would do chemo and she believed everyone who worked at the agency would as well.
So right now, I am willing to trust that they know more about this subject than I do and that they are committed to helping as many people as possible get better and see where that takes me.

– I also feel like I need to do what I can to eliminate this nasty mo-fo disease. If being part of a study can help some, then I’ll do that.

The chemo start date is (tentatively) May 31st.
I don’t know if I am in the study or not. If I am in the study, then I have to get extra treatments and will have to be there 5 days a week. If this happens, then I will be seeing if I can recruit some drivers so that Elaine can have some small bit of a life. The treatments will be one 7 hour treatment on the Monday (which Elaine will probably oversee) and 4 one hour treatments around dinner time on the other week days.
More as it happens.

And finally, people have been amazingly sweet and supportive and lots and lots of folks have asked if they can help in any way.
I think I am still learning how to deal with people doing things for me/us.
We certainly have some little details that we could use some help with and I need to figure out how to accept that and also how to co-ordinate that, so that it works for everyone.
One thing I have realized is that we, Elaine and I, are going to be doing this chemo thing for the next 6 months. I think things are actually pretty good and pretty manageable now and the real challenges are in the next few months.
I’m trying to do the things I can now and hopefully I am rely on this great generosity when I am less able to do things.
So I am hoping to keep the help of our friends and family over the long haul. That’s my hope.

In the short term, if anyone knows of a good source of organic potatoes…
we have decided to clean up our food gig here and go organic when we can. I had a wee field trip out of the house with a friend the other day and we went to Capers to get some organic grub. We got quite a bit of good stuff, but couldn’t find any organic potatoes. Well, except for a tiny little bag that might serve two people their dinner.
Anyone know of a source?

And the last thing I would say is, please be patient with us if we are in some sort of telephone or e-mail communication with you.
Right now I feel completely overwhelmed by all the people I need to connect up with about any number of things. And the list never seems to get smaller. I get things taken care of, but there always seem to be 20 things left to do. I have a feeling Elaine may be in a similar boat, but I will let her speak for herself.

Okay… that’s it, that’s all for now.
I do babble-on, no?

 Posted by at 11:41 am
May 172004

Okay, so I have a whole lot to say about this topic — but I have three projects overdue right now, and I either have to work on them or change the cat litter, and I’m picking the projects, for now.

But in the meanwhile, skipping over the fear and the crying jags I’ve been having, and the general ache of watching someone you love be in pain and danger…

Well, today it got even more interesting.

I’ve discovered that Spike is not human, but rather a radically advanced super-human. You see, her disguise as a mere mortal was penetrated today, when we went to see the doctor (general practitioner) about a leak at the very top of Spike’s surgical incision, and when the doctor poked gently at it with a swab, it popped open in a shocking kind of way. I’m sure the doctor was the most frightened of all of us. In fact, she babbled a bit, the dear thing.

Anyhoo, seeing a raw, red hole into Spike’s belly that I could potentially poke a thumb into was entirely too much for me, and I have decided (and stated confidently to the doctor) that Spike in fact had had a hidden second belly button, and that explained really a lot of Spike-related stuff I’d wondered about for years. “She’s an alien!” I said, to the scandalized and still-shaken doctor. “Look! There’s proof.”

Spike laughed when she wasn’t peering at her belly and going “Oh, gah” and falling back on the examining table in a cold sweat.

To avoid conversation with me (I’m sure) The doctor ran off and fetched a nurse, and they proceeded to Hmm Hmmm Hm a bit about Spike’s new 2nd navel, before doing something awful to Spike, called irrigation and packing.

Now she has to take antibiotics and go back to the GP every day this week for re-irrigation and re-packing.

And I, between nightmares, shall continue to watch for clues that Spike is really not of this earth. Perhaps a third eye hidden somewhere?

Bend over, Spike, my love.


 Posted by at 7:45 pm
May 152004


Bonjour and welcome to our little page dedicated to the adventures of Spike and Elaine in Spike’s ongoing medical saga.

Some folks aren’t completely aware of the background, let me fill you in.

Elaine and I started dating about 3 years ago, and back then Elaine used to notice that there were some changes in my body right before my period.
My periods have always been pretty awful so I didn’t really pay much attention to it. Periods had always been awful and would always be awful and I couldn’t imagine it actually happening in a relatively painfree and easy kind of way.
But Elaine convinced me that it wasn’t normal to be in so much pain, that it could be endometriosis and that I ought to have it checked out.
So, I did that.
And my doctor said that it might be endometriosis but it was really hard to say without doing an operation to go in and check, and that I pretty much had to just live with it.
That was about 2 years ago.

So, a couple of years passed and things kept getting gradually worse. Finally, it got to the point where it became pretty uncomfortable to have sex, and I wasn’t very happy about that.
I am a shallow person and it doesn’t embarrass me one little bit to admit that that was the thing that kicked my ass into action.
So, back to the GP and she refers me for an ultrasound so we can find out what’s what.

So, off I went for an ultrasound.
It’s a couple of months ago now, but I still remember all the joys of the distended bladder on the spring fresh morning, as I waddle into the clinic.
The ultrasound was painless.
And then we waited a couple of weeks to get the results back.

You know how you can tell when someone is holding it together, when they aren’t necessarily used to giving out bad news but suddenly they have to?
That’s how my GP was. See, my GP likes me as a human being, I can just tell. She knows I am not scamming her and that if I have come in to see her, it must be something important. She treats me really well and with a lot of respect and I could tell she was rattled when she had to say that the ultrasound showed that I had a tumour that was about 10 cm (the size of an orange) attached to one of my ovaries.
She told Elaine and I and we were kind of subdued in our reactions.
“okay then, what do we do next?”…
Well, the next thing we do is go see a gynocologist.
I’m pretty sure my GP went home that night and banged back about 3 bottles of wine.

Now, here’s the thing you never know until you become a gold star patient.
Your doctor’s office has the ability to provide for you in lots of ways.
Suddenly there is a woman who makes my appointments at the gynocologist’s office.
So, off I go, to the “Women’s Clinic” at VGH.
The great big Gender Offender.
Sitting in the hallway with my ass hanging out of my pastel blue gown with all those nice suburban girls.

Finally I get in to speak with Dr. Gyno Dude.
He seems pretty okay.
He says we have to have surgery. Says we have to take out that ovary that is being strangled by the tumour, says he may have to take more, he’ll see what happens when he gets in there.
Oh, right, this conversation happened with just me and the doctor. Elaine was there but I was so nervous about being a big old gender queer in the conservative women’s clinic that when they called my name, I jumped up and took off like a jackrabbit down the hall, so Elaine got left in the waiting room.
Not what we had hoped but that’s how it went.

Dr. Gyno tells me the score and I pretty much instantly black it all out.
But I do recall that the appointment with him was on the 20th, the day before my birthday.
And I do recall him saying that there was a chance that the Hospital Employee’s Union would go on strike, which could cause some changes in the plan.
I went home, he said he’d call me.

Then Elaine and I went away for our collective birthdays.
That was nice.
Elaine proposed to me.
I said yes.
Now I have to beat this stupid illness into the ground, cuz there is no way I am gonna actually get the girl and then drop dead.
No… that version of the story ain’t working for me.

On the way back to Vancouver, we stopped for gas, bought a newspaper and saw that the HEU had indeed gone on strike and the hospitals were cancelling tons of surgeries and at that point, complete confusion descended upon us.
I don’t really recall how long the strike lasted, it was shorter than I expected.
The government seems to have held a knife to the union’s throat and the union seems to have given in.
That’s kind of a drag.
Cuz much as I wanted the surgery, or at least a surgery date, it was kind of exciting watching people start to organize to stand up to the school yard bully that is our provincial government.

The strike ended pretty fast. Just as soon as I got used to it being in effect, it was over.
The Tuesday after the strike ended,the Gyno’s office called and said they had a cancellation for Friday and they needed me to hop along and do a million things and get ready for everything. What a wild week that was. I didn’t know you could fit so many near nervous breakdowns into one calendar week.
And to some extent, I got off easy, because as soon as they poured the anesthetic down the IV tube, I got to care a whole lot less and everyone ran around and looked after me. The wifey, on the other hand, had her nervous breakdown potential peak at that point. But I am getting ahead of myself.
All that week, we ran. Ran, ran, ran.

On the Thursday before the surgery, I had to have a Peg Lite treatment.
That was as awful as anything can be.
Now, one thing I find interesting in all this is the way that medical people do, or in many cases do not, communicate with me about how things are going to work and how awful this thing will or will not be.
Nobody really warned me how drop dead awful this Peg Lite/Lyte solution thing would be.
Basically, I had to drink 4 litres of water with a hideous, bowel cleaning, electrolyte rich solution. I had to drink an 8 oz glass, wait 10 minutes, drink another glass. Bang, bang, bang. Until I had drank all 4 litres.

It isn’t quite so awful when you are first starting out.
The rancid taste hasn’t completely marinated your taste buds.
And, unlike many other fiendish medical treatments, you pretty much have to do this to yourself. No one pours it down your throat, though by the end of it, Elaine was holding my hand and patting my head as I turned paler and paler shades of grey. It was really, completely awful.
But it was also interesting because drinking the solution made me feel really sick, and in the process of drinking it, I had this moment of realizing that Elaine was having to look after me while I drank it, than in certain situations I had to rely on her to look after me and that we weren’t really equals anymore. That I have morphed into being ‘the person who must be looked after’.
I’m not really keen on that role.
I think that will be a huge motivator in me rebounding from all this shite.
The next day, we trundled off to the hospital.

I had a lot of apprehension about how the whole genderqueer in the Gynocology ward thing was going to work out. I was really happily surprised.
I think all those sensitivity training workshops that the Health Board makes their employees take, I think that’s paying off, because folks who worked there seems to get it, who I am, and just be cool.
That was good.

So there we are at the hospital, doing the admitting process.
I sat there in the admitting ward, in my little blue gown and we played cards and laughed and tried to act as calm and normal as possible.

Elaine got to come with me, all the way to the doors of the operating room.

Dr Gyno man talked to us before the surgery. He said he wouldn’t know what it was till he opened me up but he would remove the tumour no matter what, which was fine with me cuz I don’t need a big ass orange in my abdomen.
He said he wanted permission to take out anything else if it looked suspicious, we said okay. And he said that the operation would take about 45 minutes if all went well.
He also seemed way nicer and way happier when I saw him than he did when I saw him at the clinic, which leads me to believe that maybe he really likes doing the surgery more than the admin side of things. And I think that’s a good thing for me to believe. I have nothing to base it on except presentation, but I got the impression that he is a good surgeon.

I kissed Elaine good bye around 3 or 3:30.
They wheeled me down the hall and into an operating theatre.
It’s very strange looking at the world with your feet forming a frame around everything and your view being basically at crotch height.
I chatted with the folks who would be operating on me in the operating room.
I said I was being operated on my Team Aussie because I had two Australian gals in scrubs and with scalpels at my bedside.
The anesthesiologist said I was going to tell him a story about a favorite vacation and would finish the conversation when I woke up after the operation.
Not only do I not remember the operation, I don’t remember any of the details of him doping me up.
I remember chatting with them all. I remember thinking that it felt funny to still be conscious inside the operating room. I remember that there were a couple of people emptying sterile equipment out of the autoclave but it looked so much like a bunch of busboys emptying the dishwasher in a restaurant.

And the next thing that I remember was waking up in agonizing pain. It was like someone had taken course sandpaper to my guts and rubbed the surface of all my organs. Then, they hooked up an electrical charge and ran it thru the area.
That’s how I felt when I woke up.
I am pretty sure I wasn’t screaming when I woke up, because I just didn’t have the strength, but that’s the only reason I wasn’t blowing everyone’s eardrums to bits.
It was so much pain that I couldn’t even muster the strength to fight it.
There was a nurse at the side of my bed and she was encouraging me to push the morphine button, and I would and then I would drift off into my state of sleepy misery, and she would wake me up again, and I would push the button again, and on and on.
And she asked me how I would rate my pain, from 1 – 10.
I told her 9.
She said I could leave once I got the pain down to a 5.
I got busy pushing my button.

I also remember looking up and seeing a shock of screaming red hair and I realized that I had an infiltrator. You see, there’s a dyke I know. She’s a pal. She is a bit bold, and she happens to work at the hospital in the cafeteria. She knew I was there in the hospital and so she was coming to find me. She looked in my room and I wasn’t there so she came looking in the post-op recovery room.
And there I was.
I sort of remember chatting with her.
I do remember the nurse who was looking after me seeing her and saying, “Excuse me, do you *work* here?”
The dyke pal looked a bit incredulous, like why would she be wearing that terrible outfit if people weren’t giving her money.
But she did get shoo’ed out of that ward.
I thought it was pretty wildly funny, even in my groggy, miserable condition.

And finally a porter drove me and my bed back to my room.
Again the world is seen from the height of someone else’s hip.
I remember thinking the woman was a saint because I could feel her slowing right down when she would come upon bumps in the hallway.
And now I wonder, why did they have bumps in the hallway?

She brought me to the hospital room and Elaine was there with a friend of ours.
I figured I was imagining the friend being there because she (the friend) said she was going to be out of town. I guess there was a change in the plan.
At this point, it was about 8:30 pm. Elaine hadn’t seen me for 5.5 hours and the operation was supposed to be pretty quick. Unfortunately, nothing went the way it was supposed to so I was really a long time in the OR and extra long in the recovery room.

I saw Elaine and I could tell she was completely worn raw from concern and the extra waiting time.
We set this blog up so both of us can write in it, so I am gonna let her tell her version of that chunk of time.
I was awfully happy to see her, but I felt weird because I couldn’t really leap up and hug her or anything.
At some point in the evening, she told me that the doctor had done a complete hysterectomy, that he had removed the original tumour, as well as a larger one which hadn’t shown up on the original ultrasound, and a few smaller ones that were scattered around my abdomen. He said that yep, they were cancerous, and he was confident that he had removed everything that is visible to the human eye.
I don’t recall if I learned then that I had to go do chemo and radiation, there has been a shitload of information coming at me and the details get a little messy somethings. In the event of messy details, ask Elaine, she is much better at all this than me, the remembering part, I mean.

The hospital stay was kind of fun, actually.
I had a pretty high sense of dread about the whole thing, but I had maneuvred a private room and that was a brilliant move on my part, if I do say so.
Elaine and I had collected a list of names of people we needed to contact with info and Elaine had put it out that I was keen on having visitors. And I certainly did have visitors. I had so many visitors, I think the nurses might have made a fuss if I was not in a private room. Instead, I think they liked that I was the lowest maintenance patient in the ward.
I had lots of visitors and I want to thank everyone who came and said hey and brought a National Enquirer or balloons or just their very own bad attitude or appreciation of the view and how you could see the Cirque de Soleil from my window. It helped and I appreciate it. Okay, the part about the Cirque de Soleil, that didn’t help much, but everything else did.

Now, the funny thing about the cuts to healthcare is that, in my opinion, there is no longer any one person who tells you how things are going to go and what you should expect to happen and all that.
I wish someone could have sat me down and said “these are the things you can expect, this is the timeline for healing, these are the things you won’t be able to do.”
I got little bits and pieces of that, but rarely from anyone in a hospital uniform.
For example, it was a friend who told me that it is really important for me to wiggle my feet after the surgery, so I keep the circulation going.
At a certain point, one of the nurses suggested it was time to move me off the morphine pump. All day long, each time she came in my room, she would say, ‘we should get you off that pump today.’
Now, for me, that leads to a lot of questions that I consider pretty important, especially since I had recently experienced what my body felt like sans painkillers and I wasn’t really enthusiastic to feel so much any time soon.
But you know, I think it’s important to say how soon I should be off the pump, what we will be replacing it with, how many times in a day I should be tapering down to, how much baseline pain should I accept before I start bellyaching.
Luckily, I have a few friends who work in the healthcare profession and they answered my questions.
I really don’t know what happens to people who are less fortunate than me, who don’t have a bazillion friends dropping by to keep an eye on them and who don’t have insiders who translate what to expect. It would have been a lot more scarey without those things and all that help.
I still have a belly full of steri-stips (see above) and no one has said when I should take them off and let me incision heal on its own.

They sent me home on Monday and I have been trying to live within the very boring guidelines I have been given. Don’t lift anything heavier than a phone book, don’t take a bath until… I don’t know when (another snippet of information that I didn’t get.)

Yesterday we went to the BC Cancer Agency.
That was interesting.
I had some bloodwork done there before the surgery and it felt pretty uptight and conservative.
Yesterday when we walked in, we saw a sign that said that they don’t discriminate on the grounds of sexual orientation, gender identity, and a bunch of other pretty cool stuff. I was impressed.
I’ll be spending way too much time there so I should be able to report back about how good they are at living up to their goals, but right now they still seem like a pretty uptight and conservative bunch of peeps.

When my Dr Gyno spoke with Elaine and I, he said he wanted me to do 3 chemo treatments and one radiation treatment.
Now I have yet another doctor, Dr Hoskins, he will be my chemo doctor and he would like me to consider being part of a drug test for a new procedure where they give me 3 drugs instead of 2.
Having spoken to the l’il woman about it, it seems like I will say yeah to participating in that.
Now on some level, it’s a bit like being on a game show and trying to figure out if the horror behind door number 1 is worse than the misery behind door number 3.
I don’t even know what I am talking about, but I have to make a decision that could ultimately determine whether or not I am alive in 5 years.
Oh… yeah, that part.

Okay, the cold hard diagnostic facts about me and my disease.
I have ovarian cancer.
And, the chemo doctor says, “The reason you got it is because you are a woman and because you live in North America. It *isn’t* because you smoked or did anything else wrong.”
And while I am not planning on starting smoking again, I am relieved of some level of guilt that this would have happened no matter what.
so, I have ovarian cancer.
Elaine tells me that Dr. Gyno told her that it is rated as 3C, which isn’t a really optimistic place to be, recovery-wise.
The current estimate from the chemo doctor is that I have a 50/50 chance of making a full recovery and dying of old age.
(This is the part when quite a few folks start crying. If you find you are suddenly getting a bit moist, know that you are in good company.)

Here is how I see it.
I am young, compared to a lot of women who get this disease. I am probably physically stronger than a lot of women who get this disease. I have a really solid support system.
I am totally not into being dead.
And I am, perhaps, the most stubborn person that Elaine has ever met, and that means quite a bit.
I plan on slogging my way thru this with simple bull-headedness when necessary.

And yes, I guess I am scared. I think I am so scared I haven’t actually let that part seep through yet.
Mostly I feel resigned to the fact that I just have to do this hard thing. It’s good to have so many people watching my back and looking after me while I do it. It’s good to know that I have Elaine watching over me and caring for me, and it’s good to know that people are keeping an eye on her and looking after her as well.

I’m totally pissed off that Elaine and I were going to go to San Francisco in the summer and we had to postpone that trip because I will be pulling my hair out and smoking pot.
I am totally choked that I had spent months going to the gym so I could be all buff for the parade and I was hoping to have the girlies oogling me. Now, if I get to go at all, I will be the little bald space creature.
But that’s okay.
In spite of my whining, it actually is okay.
I’ve come to appreciate the importance of short term sacrifice for long term benefit lately. I’m cool with that.

And finally, lots of people have been really wanting to do something to help.
I certainly appreciate that.
And much as the greedy little pig inside of me can’t believe that I don’t have a long alpha-sorted list of needs and demands all printed up and ready to go, shockingly, the things I need are kind of few.
What I/we want or need changes pretty quickly.
Today what I want/need is Henry Weinhardt’s Root Beer and Henry Weinhardt’s Vanilla Cream. I also want/need the *pickled* asparagus that they sell at Costco and which I seem to eat by the gallon in the night time. I also want/need a place in America where I can arrange to have a t-shirt sent. Err, well, it’s more complicated than that. It’s actually 2 t-shirts and the company won’t ship orders unless the shipping and billing address are in the same country. So I need to get someone who trusts me enough to write them a cheque and then have them pay for it and I pay them. And *then* after all that, I need them to take delivery of it and repackage it up and send it to me here in Canada, just like I was visiting your house and forgot my t-shirt under the bed. Otherwise I end up paying up to $40 more for some mysterious brokerage fee that is different than the S&H fee you pay when you buy something. All in all, it makes the t-shirts I want cost about $50 each, with the brokerage fee added in, and much as I like the shirts, I don’t like them that much.

Not much, eh?
And tomorrow, my list of wants and needs may bear no resemblance to this one.
In a general sense, we need people to check in and visit with us, and we need to be able to say, ‘no, now isn’t a good time’ and have everyone be cool. We need to be able to talk about the medical stuff that’s going on and we really need to be able to not talk about it all the time. News from people’s regular lives is really needed because it helps counter-balance the insanity.
I need people to be able to be around me without giving me ‘the look’, you know what I mean… the look one gets when they are different than normal people, and perhaps not long for this world. The look of pity, the ‘you poor thing’ look.
I’m gonna implement a $100 fine for anyone who gives me ‘the look’.
You’ve been warned.

I am going to be doing chemo for the next 6 months.
I expect it is going to be really gruelling for me and almost as gruelling for Elaine.
I expect things are going to get harder before they get better.
If you guys can continue to check in, continue to offer to help, I would be really grateful.
We’ve got a long road ahead of us. And we welcome lots of passengers on this freaky little adventure we are taking off on.

So, that’s it.
At least that’s the background.
Stay tuned and we’ll keep you posted.

 Posted by at 2:51 pm