Sep 282005


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.


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

  13 Responses to “Who’s your favorite mutant?”

  1. Well, I’m a mutant, too. So at the risk of sounding vain, I’ll say my favorite mutant is me.

    I haven’t had the BRCA testing done. I know, you are shocked. But we don’t have a history of breast or ovarian in my family, either, and when it came up I just couldn’t deal at the time. I’ll probably do it now. It’s not like I’m ever leaving cancer behind now…

    Anyhow, I’ve got lots of other mutations I know about! And, truth be told, pretty much everyone on the planet is walking around with either some mutant genes or spontaneously mutated cells. It’s just that some mutants are scarier than others.

    Sorry about your news, Spike. And sorry you have to make all the tough decisions when all you want to do is forget.

  2. Spike, this is so perfectly written, and sad, and I am really blubbering over here. It really sucks. I’m just so sorry.

  3. Thanks, Rae,

    It pretty much sucks.
    But still, I had to go back to the Cancer Agency the other day and I looked around at the people who are still doing it, or just started doing it, and I remembered how hard that was, and I realized that things could be so very much worse for me.

    And thanks to you too, Cancerbaby.
    Maybe we can have a Miss Mutant Universe pagent.
    I think that would be pretty entertaining.
    And if nothing else, we could have quite a bit of fun in the green room.

  4. Holy Christ Spike!
    What won’t you do for attention?

  5. Gosh, Spike, I’m so sorry. There is so much breast cancer in my family that when I had the test done, I completely expected to hear that I tested postive. Instead, I must have the “unknown” mutant gene in my family. Somehow it doesn’t surprise me. I hope your new doctor goes over everything in great detail for you. First, only 10% of breast cancer is related to BRCA 1 or 2. Secondly, the risk goes up as you age. So really, you could chose to worry about this later. Also, the risk decreases if you have had an ooferectomy, which I would assume you have had. A great, qualified doctor/genetic counselor could give you a very clear picture where the decision makes itself. It just sucks that youhave to make the decision.

  6. Well, indeed, that sucks.

    I’m also a mutant, more of a “stupid medicines fucked me up in the womb a bit” sort than the “terrifying ordeal of life-and-death and constant wondering when the tests will come back and what they’ll say” sort. For literature, my current favorite is probably Miss Frost from Joss Whedon’s run on the X-Men. (Joss Whedon! Like in Buffy the Vampire Slayer! Is! Writing! The X-Men! It’s cool, trust me.)

    Man, how come the cool mutations happen only in comic books and now movies? Oh, yeah, speaking of E.’s work, ironically I just went to school at the set that is Xavier’s School for Exceptional and Gifted Children, Royal Roads. Very cool.

    But enough nervous chatting about me to delay the inevitable tears. I sure hope you’ll continue to be OK, and to be OK with E. I know horrible shit like this can’t help but reshape you, and in ways that aren’t necessarily character-building. You seem to have your priorities in order, namely “survive” and “stay sane,” so I don’t really have any advice. Know that K. and I are here for you guys if you need anything. I don’t get around often but I am moved by what I read on your board and just want you to know I’m out here praying for you and that I hear you. Likewise for K., but she’s really, really hung over today (a lot) and so might not be in shape to respond right away.

    Take care & keep fighting & talking.

  7. Spike…

    Dayem, I’m so sorry.

    Ohhh in case no body else gets around to telling you or reminding you talkin’ about this would not have ruined dinner in the least. Dinner with friends is meant to be an opportunity to talk, about whatever needs to be talked about. Try to remember that next time won’t you. I don’t want to have to get all bossy on you, it seems cliche.

    ohhh and just so you know I’d have to say your pretty damn high on my list of favorite mutants.

  8. you are the best-est mutant in the whole world.


  9. Spike-
    I followed your lead and painted both of my bathrooms–two more weeks before I finally am off disability and back to work. It has been on hell of a ride since the diagnosis.
    Quit being so damn tough. There is a HUGE contingency of fabu femmes out here who are more than willing to put on pink arse-kicking pumps and handle the details for you.
    School is the perfect diversion. I finish my first semester in 3 weeks. Stay focused on that…..the rest is just effluvia.

  10. So sorry you have to deal with this now. This whole cancer thing really sucks. I guess all I can say is Carpe fucking diem, amigo. I’ll do the same…

  11. I’m so sorry to hear this news, Spike. I can see some positive aspects about knowing now, before your mutant genes activate. But I’m sure it doesn’t make dealing with it any easier. You’re on my mind a lot these days, bud.

  12. Oh, i’m sorry to hear about the tensed diems you’re going through, Spike. i wish you good luck.

  13. Holy crap, more shit for you to have to deal with? Not fair. So bloody sorry you’ve got all this going on, Spike. You’re so right about the whole “carpe diem” thing — I’d been pondering such things a lot lately, and you’ve got me thinking about it more. I’m thinking of you and sending hugs and love to you and Elaine, and hopes for better times.

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