Sep 282005
 

slash

I’ve been kind of quiet, blog-wise, lately.

Things have been busy.
Things have been hard.
Things have been weird.

It’s hard to figure out where to start or what to include.
After all, this is the world-wide web.

So, my dad is in the hospital.
I went up to visit him cuz my girlfriend had buggered off and I was alone and I decided I might as well make the most of my free weekend, so I fired up the mighty 4×4 and drove and drove and drove.
The good news is that driving, alone, with the music cranked, really helped clear my head on some long smouldering issues on the subjects ‘what do I want?’ and ‘how can I get there from here?’.
After an extra long drive, due to not quite grasping the subtle nuance of several directional signs, I ended up on a not completely incorrect highway, but one that added about 2 hours to the drive.
But it was a beautiful drive and I am glad I made the wrong turn.

When I finally arrived at my dad’s place, I walked in the front door and found him on the couch, unable to get up.
Seems the old man had a dose of the pneumonia.
He has been in the hospital for about 10 days now, and frankly, I am not sure what his future holds.
I think he is awfully sad, and tired, and he misses my mom more than I ever would have expected, and I think he just feels like checking out.
Maybe I am wrong.
But he seemed very much like a man who was tying up loose ends when I spoke with him.

So, that’s hard enough.
And sad enough.
And I don’t even know how to begin to process that.
See, for all intents and purposes, I lost my mom when I was doing chemo.
I think my poor old dad couldn’t believe his Old Testament luck in 2004.
I need to make sense of the fact that I have lost my mom and I am going to lose my dad sometime in the not too distant future.

Like I said, that’s hard.

And I am in school.
I thought that would be great.
And it is.
But it takes an enormous amount of my time and energy.
It isn’t that it’s hard, because really, it’s not.
But it requires about 35 – 40 hours of my time and attention each week.
And I already work full-time.
I am really glad that I am in school and doing something different.
And if the way the gals in the bar were reacting to me being in library school is any indication of what my future holds, I am all for academia.
It’s just a bit of an adjustment.

And I am finding that I am trying really hard to make sense of what the hell I went through last year, but it is such an enormous amount of information and emotion and memory and ideas that I end up doing a Linda Blair and my head spins around and it’s a mess.
And I think I am messing up my relationship with too much Linda Blair.
Actually, I think (sshhh, this is a secret) we both have our Linda Blair moments and that makes it extra specially hard.
But here is the thing…
and I don’t mean this to be anything discouraging to anyone still in the trenches with cancer…
but here it is:
I think cancer eats a big hole in a person.
Leaves you looking like a freaking donut.
It takes something from you and from the people you love who go through it with you.
My girlfriend and I, we are the donut people.
Sometimes I think I can hear the wind whistling through the empty spots we have, where cancer wore through us.
And I don’t know what to do about that.
I love her more than anything and just want us both to get back on track.
I thought we would be cancer super-heroes.
Turns out, we are just regular, and that, just like my veins, we got some scar tissue to work through.
I wish it was different, but it isn’t.

And after all that sister-Mary-Sunshine routine, here is the kicker.
The thing you have been waiting for.

Last week, the nice gal who does the genetic testing at the cancer agency called me.
Asked me if I could come in and get my test results.
“Why sure,” I said.
Now, my girlfriend was super-busy doing 12 hour days for the movie industry, for The X-Men3, of all things, so I didn’t mention it.
And I was pretty solidly convinced that I was going to get good test results, so I wasn’t too concerned.

Oh.. let me back up some.
See, there is a bit of an overlap between breast cancer and ovarian cancer.
And there are two gene mutations called BRCA1 and BRCA2, that’s what they look for in the test.
Testing positive for the gene mutation means you have this wildly unpleasant chance of getting breast cancer and/or ovarian cancer.

Anyway, back to the funny story…

I didn’t tell my girlfriend because she was busy and because I didn’t think much about getting the test results and a whole lot of other reasons.
But I did happen to mention it to a friend in a phone conversation that morning.
She said that I couldn’t go by myself and she said she would come with me.
She’s a bit bossy, as are all the women I really enjoy, and she got on the phone and re-scheduled a job interview and then came to the meeting with me.

Have I mentioned how much I like the gal who does the genetic counselling?
She is just so nice.

So, the other E. and I went in to meet with the nice genetic counsellor and we sat down and chatted a bit, and she asked me if I was nervous about my test results and I said, no, I hadn’t had time to get nervous yet (bearing in mind that they did the blood work for this test about 10 months ago and since then, I have been waiting, and waiting, and waiting and waiting).
We all chatted for a bit and then she opened my file and said, “You test positive for the BRCA 1 gene mutation.”
I confess, I was gobsmacked.
It was *so* not the information I thought I was going to hear.
See, no one in my family has ever had cancer.
No one.
I am the freak, in that, and a few other, ways.
It makes no sense.
But there it is.

And what that means for me now is, I have a 50 – 85% chance of developing breast cancer in my lifetime.
I will go get mamograms and MRI’s, every 6 months.
I can have a mastectomy tomorrow, if I want.
Okay, not tomorrow… but pretty freakin’ quick, I reckon.

It’s weird.

Totally weird.

I don’t know what I will do.

It’s bizarre to think I have been walking around since birth with my cells mutating.
That’s weird in its own right.
And now, apparently I should make some major life decisions about stopping that.

Shheesh.

Gawd, I miss the lazy, hazy care-free days of 2003.

If you have a lazy, hazy cancer free life, even if you hate your job, or the collection agency calls you at dinner time, or your ex took all your valuable electronic equipment, or you didn’t get to start in the big softball game, or your girlfriend was necking with some mindless bimbo in the bar, hey
I am here to tell you.
That stuff doesn’t matter.

Carpe fucking diem, amigo.

I’d be so happy to have some little problems, some time soon.

Anyway, that’s where I am at today.

I don’t know what I am going to do.
I have already been thrown back into the system of all things cancerous, so I am waiting for my phone to ring, so I can make an appointment with my newest doctor, the one who specializes in the bosums.
And there are a whack more details I have to take care off, and doctors and peeps I have to meet up with.
And I am kind of pissed off about that.
I’ll tell you the truth on that one.

But yesterday, I was out walking, and I thought, I am not going to make any major life decisions till I finish this semester.
So, sometime in December, I’ll try to get to the bottom of all this.

Untl then, who’s your favorite mutant?

 Posted by at 10:48 pm
Sep 052005
 

I saw this article today and it’s been tonking on the inside walls of my brain ever since I saw it.

The article is taken from here

Full text below:

Woman to sue over breast blunder

A woman whose breast was removed after she was wrongly diagnosed with cancer has branded a 44,000 compensation offer ‘an insult’ and is to sue the health authority responsible.

Marjory Patterson, 52, had a healthy breast removed by surgeons after being told she needed a mastectomy.

But doctors at NHS Highland’s Raigmore Hospital in Inverness later admitted that they had been looking at another patient’s tissue sample and had made a mistake.

Mrs Patterson, of Alness in Ross-shire, was offered 44,000 compensation by the hospital, but said the amount was an “insult” and now plans to take her case to the Court of Session.

In a statement today, Dr Roger Gibbins, chief executive of NHS Highland, said: “This was a tragic case where a mistake was made.

“We apologised to Mrs Patterson as soon as the mistake came to light and have been trying to negotiate a settlement.

“We would like to negotiate a reasonable settlement figure with Mrs Patterson to avoid unnecessary court action. It is essential that we learn from this mistake.”

He added that changes had been put in place at Raigmore Hospital to reduce the risk of such a mistake happening again, including a review of the circumstances surrounding the case.

“As a result of this review a number of changes have taken place and procedures have been tightened up,” he said.

Reacting to NHS Highland’s statement this afternoon, Mrs Patterson’s husband, David, said: “I don’t think they will come up with what we are looking for – they are very, very biased and very cheeky and don’t seem to understand what we have been through.

“My wife is a nice person who didn’t deserve this. We are not talking about 44,000, we are talking 200,000 or 300,000, and I don’t think they will come up with that kind of money. It will go to court.”

Mrs Patterson said she was devastated by the mistake but wanted to highlight her plight.

She said: “No-one can understand what it’s like to be told you have a disease that could kill you.

“Then to be told it was a mistake is just disgusting. They can’t bring my breast back – I am disfigured for life.”

A couple of things come up for me when I read this.

Firstly, that would be awful, to have had some nasty surgery and lose some of your parts and then find out that they made a mistake.
Ouch!
Big big bummer.

I mean, the hospital screwed up royally and that is dreadful.

But the thing I find odd is how many women experience the exact opposite of this problem.
That they know there is something fishy with their bodies, but no one will do anything for them or take them seriously.
Not that that relates back to ovarian cancer diagnosis and treatment, not one bit.

I was talking with my GP the other day and she said she had a patient who had a long history of breast cancer and she wanted her breasts removed. Didn’t want to deal with the possible consequences, given her history.
She met with all kinds of surgeons, who all looked at her file and looked at her situation and they all refused to operate.
Then she finally found a surgeon who would operate and…
you know how this story ends, don’t you?
Well, gee-whiz, look at that!
She actually had breast cancer and it was small and not yet showing up in the testing process.
So,that’s sort of the opposite of what the woman in England had to deal with.

But here’s what stuck in my craw.
I understand that reporters mangle quotes and whole stories all the time, but I confess, I wanted to hop on a plane and go tonk Ms. Lawsuit in the head for saying:

“She said: “No-one can understand what it’s like to be told you have a disease that could kill you.”

Really, Mrs. Patterson?
Really?

Well, here’s what I say.
Fuck you, Mrs. Patterson.
Fuck you twice.

No one can understand?
You get big whining wanker.
Careful, or you may end up with a case of terminal uniqueness.
I hear it’s not as rare as you might think.

And now the poor dear is “disfigured for life”.
Wow.
What about me?
Am I now ‘disfigured for life’ cuz my abdomen will no longer have the look they so crave at Sports Illustrated for their famous swim suit issue?
Cuz honestly, I feel a little banged around, but I don’t feel ‘disfigured for life’.

Oh, and again…
Mrs. Patterson…
fuck off.

(fuck…grumble… fuck)

 Posted by at 8:43 pm
Sep 022005
 

Lately, I’ve been thinking a lot about my cancer buddy and Tour de France champ, Lance Armstrong.

Maybe it’s because of all the wise things that Cancer, Baby had to say about the man in the yellow jersey.

And partly because everywhere I go, I see someone wearing some wrist band, of some colour, with which they hope to communicate some message.

I am still working through what I think about the jelly bracelet business.
And it certainly does seem to have mushroomed into a huge business overnight.
Imagine being the king of jelly bracelet production.
Why, I imagine the King of Jelly Bracelets is now sending his kids to private school, don’t you?

I have a yellow bracelet.
And I wore it pretty religiously, especially right after I got it.
And then a couple of things happened.
The first thing that happened was I noticed that other people seemed to wear theirs sometimes, and sometimes not.
See, for them, it was just another bit of jewellry(??), albeit with a social message attached.
Then I started to think that maybe other people can take their bracelets off because they just can.
They can take a day off from cancer.
Leave that yellow jelly bracelet next to the sink and wear something tasteful in silver instead.
And that just made me crabby.
And then I realized I had no idea what the silly little bracelets mean to anyone else.
Have I mentioned I have been mucho mental lately?
Mucho.
Si.

Then I had another problem.
Okay, maybe it is a problem that comes from having grown up queer and lived a life with a billion secret identifiers that hover beneath the radar of the common man.
See, I put on my little yeller bracelet and I felt like I would now be able to find my people.
My cancer people.
I mean, that in itself is kinda strange.
But I do have my cancer people now, and I am glad of that.
But I thought that the little yellow jelly bracelet was going to kick down the doors of the invisibility of cancer survivors and that we would…
I dunno what happens after we all meet up and identify each other.
I guess I just got stuck at that yummy Hallmark moment where we all hug and put all our previous differences behind us.
Anyway… I thought it would be great.
It would be just like so many of the secret signals we homos have been using for years and years, so I thought I would take to it like a duck to water.
I’d be a natural after all these years of living with the secret signals.
And then I would be out and I would see someone else with a tell-tale yellow bracelet and I would think, “Oh ho!!, a yellow bracelet!!”
And I would find them in the most unlikely places, on the most unlikely people.
Then I became really confused.
See, part of me thinks there are billions of people who are affected by cancer and many of them wear the snappy yellow bracelet.
People who had cancer and all their loved ones and supporters, all sporting the yellow bracelet.
Cool.
And then I realized, as I saw the wee bracelets everywhere while the Tour de Lance was happening, that I think some folks wear them just because they think Lance Armstrong is super-cool.
Because, you know, nothing says “I think Lance is the man!” more than the stylish yellow bracelet.
And then I was completely confused and didn’t know if I should wear one or not.
And I think if you are totally in to bicycling and not that into cancer, maybe it’s weird to wear a yellow bracelet.
Not that I am the fashion police or anything… but really.
Just put on a Nike shirt if you just like the athletic angle of the story.

I am still piecing it all together, and I have gone back to wearing my bracelet, but I now give myself some freedom to take it off if the whim strikes.

And about Lance Armstrong and all those charges of performance enhancing drugs…
Here is what I think.
I don’t give a red rat’s ass.
Well, I guess that’s not completely true. I hope he didn’t.
But even if he did, so what?
Lance Armstrong represents hope for so many people.
I don’t care if he took performance enhancing drugs.
I can tell you, I couldn’t win the Tour de France with a barge full of performance enhancing drugs and I am willing to bet, neither could you.
I think Lance Armstrong is a symbol for us that life can go on after cancer, and that it can be a magnificent thing, full of accomplishment and challenges and thrills and joy.
Because when you know what it’s like to lay on your ass for months, and you see how he bounced back from that and did so much, that is a huge help.
I don’t care how he did it.
For me, it’s about the sense of hope he provides.

The other really huge thing about Lance Armstrong is, he has this life where he has gone back to doing the thing that he loves and he also stays devoted to giving something back to people with cancer.
I am still trying to figure out exactly what shape that will take in my life and how I will balance the drive to get things back to normal with the really deep need to give something back to the other people who are going through this.
To me, Lance Armstrong is about hope.
And about helping the people that come after you. Trying to make it just a little bit easier for them. Because it’s one of the few things we can do.

And finally, I just want to say, it’s time to knock it off with all the other jelly wristbands.
I mean, when they were for specific types of cancer, I was okay. A bit overwhelmed by the whole rainbow of bracelets but mostly okay.
But now, they are out there representing various political issues and even some bands are using them to advertise.
That’s too much, folks.
Knock it off.

 Posted by at 7:04 pm