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

  10 Responses to “the background”

  1. What’s this? You’re not feeling well?
    That sucks. See you at work on Monday.

  2. I think the Spikester is an amazing guy, bald or not. Writing about the experience of illness is so brave and healing and hard and wonderful and scary. The Wounded Storyteller by Arthur Frank is a good (kind of academic) book about that. Ya see I did a little research about this being ill and living to tell the tale thing. It is one of the best things you can do for yourself. If you want community, unfortunately I have 3 other friends undergoing chemo as we speak. I think you all might be able to help each other since you (and your phenomenal supportive partners) can talk about the hard stuff in ways only people who have been there can. Happy to pass on contact info if you’d like.

    You have a fan Pimp Daddy pig boy waving pompoms and doing cheers for you in DC…All my love to both of you.

  3. You know, I think the girlies will be oogling you even if you are a bald space creature.

    Some of us *like* bald space creatures. (Some of us *are* bald space creatures…)

  4. my couz jen crothers told me to check out this site and i would say you are one of the strongest most forthcoming person eva you are totally awesome in the way you approached everything that came at you, you should be an inspiration to all who have cancer!…..wishing you and elaine the happiest and longest times together

  5. Spike you truly are very strong and we hope you get outta this shitty scene soon. Our thoughts are always with you and Elaine.
    Natalie & Gabe

  6. Spike-
    I found your blog on a friend’s live journal.
    Inner strength is always better than muscles anyway….you’re the hulkster!
    take care, and meet the monster with a fist. He’ll back off if he knows what’s good for him.

  7. Looks like you have a challenging journey ahead. You obviously have many people who care deeply about you and that, to me, is a huge part of getting well. You don’t know me, but let me say that my thoughts are with you in your fight. Beat the bastard down and don’t give a fucking inch! All the best.

  8. I AGREE Peg Lite SUCKS!!! It’s one of the hardest things to do. I’ve had to do it about four times now:s

  9. Hi there…I Googled for strong electrolyte, but found your page about the background…and have to say thanks. nice read.

  10. Spike – you have been very brave to weather through ovarian cancer. My mum was diagnozed with stage 4 ovarian cancer last December. It is a shock to all of us as my father had just past away from advanced throat cancer 9 months before my mum’s own diagnosis. She went through the surgery and chemotherapy really well and is now in remission. While the physical wound is healed, the spiritual wound is harder to heal. She has lapsed into a deep depression and I am trying to cheer her up with inspiring stories of fighters against the disease.

    Diary of a QuirkyLady

 Leave a Reply



You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>