Wednesday, November 19, 2008

Ten Years is Not Enough

Recently it seems like a lot of people, myself included, have said things like "well, she's been fighting cancer for ten years--that's a long time." Meaning that someone who is dying now, officially, can be looked to as a valiant survivor for having lived with this disease for a whopping ten years.

And then the other day I realized: I have cancer. I have been fighting this disease for three years already, and looking forward to many more. But ten years--just seven more--is not enough. I can't lay down to die when I am 34! That is far too young. I have friends older than that. And I have far too much to do. I want to have babies, of course, even if my womb is now in permanent hibernation; but I don't just want to have them, I want to see them grow old and have their own babies. I want to be a grandma. And I have things to do at work--not just beating Host in Vancouver, but taking over the labor movement. We have a lot of work to do if the good guys are going to win and we're going to have a real movement of working class people. And that is going to take more than seven years.

So I have a new plan. No more of this idea of living with treatment for the rest of my life. We are going to blow this thing out of my body once and for all. That's why I have been miserable for the last few weeks. That's why my life was risked by multiple infections when I didn't have any white blood cells (first line of defense from infection). That's why I have more new scars than I can count and more on the way. That's why I will do whatever it takes to win.

Because ten years is not nearly enough. And I don't want to spend the rest of my life fighting. I want to win decisively. And I will. Or I'll just keep fighting. But either way: I Will Win.

Sunday, November 16, 2008

Sequels Always Suck

It's no different with cancer. The second time around is just not the same. The first time around it was just something to get through, something to get past. All the chemo, the radiation, the mouse cells that upped my pain threshold about a thousand-fold. They were all just hurtles to jump, and at the end of the obstacle course was a land without cancer.

The first time around, you can believe that.

The first time around you don't know that it's forever. And no matter how many clues there are on the way--the endless scans, the treatments that go on so much longer than the disease appears to be hanging around. But you still believe that it's gone, and it's not coming back.

But the second time around...The second time around is different. Now you know: it's back, and it's probably not going anywhere. I mean, I believe that I will get back to clean scans. I think I am probably there now. But I will never be without cancer. I may have known that before, but now I feel it to be true. And feeling it is so much heavier.

What I don't know is how to live with it. How do I make a life where I am dealing with this disease all the time? How do I live and work and go through treatment at the same time? I feel like everyone expects me to disappear for a while and come back fixed. Maybe that's my imagination, maybe that's what I want to believe is possible, but it's not going to happen. I am going to have to figure out how to live the life I want to live while getting treatment and finding new ways to keep my disease in check. And that's maybe the hardest, maybe the scariest thing I've had to deal with yet.

Monday, November 10, 2008

Not a Cancer Patient

I haven't much felt like writing in here recently. I made a stuffed dragon instead. He breaths fire constantly. The truth is, I named myself 'not a cancer patient' in these pages because I don't want to be one. I want to live my life as if cancer has nothing to do with it. I want to get chemo and radiation and go about the rest of my life as a 27 year old enjoying the crisp winter air. That's what this blog is supposed to be about. I don't care about the gorey details anymore (though I will note the irony that I am suddenly moved to post something here on the same day I got an IV placed in my left hand, making typing quite awkward). I've been through all these symptoms before, I seem to have a slightly improved cocktail of drugs this time. (Though I will complain that I threw up on my slippers tonight, and had to throw them out.)

So the thing is, I haven't been writing because I feel like a hospital patient. That's not as criminal as feeling the cancer patient, but it's still letting the patient take over. I'm going to forgive myself the slide for now though, 'cuz I feel like shit!

Sunday, November 2, 2008

Lonely Night In The Hospital

Julia, Mom, that is not meant as a low blow. But it just so happens that I am here alone tonight and while I could easily fall asleep right now, it seems like I ought to take a moment to write something in this space. It's hard to do with company. I've been thinking for days that about what I'd write next in these pages. I haven't formed anything concrete beyond the themes of: Doubt, or Fuck--there are so many ways cancer can kill you!

I guess I should explain the second one, first. I am inpatient right now with neutropenic fevers. In the past that has meant next to nothing, but this time I got a nasty infection in that mediport they only just put in two weeks ago and so they snatched it out again last wednesday morning after a very touch-and-go evening of chills, fevers, and scarily low blood pressure. Fuck. I mean you just never see this shit coming. I have ZERO white blood cells and some kind of crazy-ass infection. Not fucking cool.

Which leads me to the inevitable thought: what if I die young? For a while, I thought about that regularly, and eventually dealt with it by willing myself to assume that I will live to be eighty or ninety, just as I've always intended. But now I'm not so sure again. I guess that's where the Doubt comes in. There are plenty of things to doubt these days. How long will I live? Will this infection rear up and kill me?--I claim in a poem that I just don't want to see death coming; that would count, wouldn't it? (Not really; that poem is about living life to the fullest.) Have I chosen the right treatment plan? How will I ever know?

But mostly, I guess, it's the wondering how long I will live that whirls about my head most these days. Just last summer I got my period for the first time since I started chemo three years ago! I went to the gyn and she said if I was trying to get pregnant she'd tell me to go home and have sex--I had excellent mucous! And now here I am again, frying my ovaries most likely beyond oblivion. They probably won't wake up again. And I don't really mind not getting my period; it's rather convenient, actually. But I want a baby. And it feels like that's been taken away from me twice now, and even though there are other ways to have children (especially when your lover has a spare womb) I just don't know if it's in the cards for me.

My sister recently asked me to be the godmother to my beautiful, wriggling neice. It brought tears to my eyes just to be asked--to have my sister want to bestow me with that honor--but it was made all the more emotional a moment as this thought flashed through my mind: okay, now I've really gotta make it. I've got to be here for this little perfect one. Got to see her grow up into a kick ass girl. So maybe I should have my own kid. I sure want one. But how can I know if I'll be there for her when she's my age? Or maybe the more important question is, who will be around for her if I am not?

Or maybe I should be concentrating on how to be around when I'm eighty. But how does one do that when almost no one knows anything about this disease, let along actually has it as an adult? If anyone out there knows another adult or adolescent with neuroblastoma, will you send them my way? I'd love to chat.