Welcome, Chaos

Looking back at last month, I realize I was basically holding my breath, trying to be frozen so the big bad scary thing wouldn't see me, trying not to even think too loudly. Or maybe I wasn't hiding, which makes no real sense. Maybe I was just trying so hard not to think about what was scaring me that I had to stop thinking much about anything.

I didn't really read. If I were a more mathy person I could chart the curve to show how I read more and more to distract myself when things are bad, up to a tipping point where books or my own brain or body fail and I can't escape into stories anymore. This was one of those times that I could not pick up a book and focus my mind.

I did listen to an audiobook at night, in an effort to keep my mind quiet long enough to fall asleep. I just borrowed something my mother had been listening to.

Welcome Chaos, by Kate Wilhelm is probably impossible to talk about without spoiling the plot. But since it was published decades ago and appears to not actually be in print, I'm not going to worry too much. My mind is a bit too vague to spoil anything very specific anyway.

It's an old sci-fi thriller sort of thing that was written in the '80s, and has a woman as the protagonist, which is..nice, and surprising, all by itself.

The main character takes a leave of absence and heads to Oregon aiming to write a book about Eagles. And that rather lovely task is pretty seriously derailed when she is approached by some sort of gov't agent who wants to use her to gather info on her new neighbor out in the woods. And she quickly finds herself deeply and [i]very[/i] permanently involved in intrigue that could alter or destroy society. Vague enough? Too vague?

It made me think about what it means to have your health and a normal life expectancy. And what it is worth to gain more time. If I could be offered a perfect and complete cure right now, what would I risk? What costs would I accept? How would the world look if that were a real option?

I didn't love the story or the characters, but considering its age, it didn't seem hopelessly outdated, and that's impressive right there. And it did hold my attention sometimes, and ask some interesting questions.

This is the last day

Today is the last day of my chemo protocol. I've been letting my mind veer away from thinking about it too much. As though it's a ghostly, insubstantial thing that will vanish if you look at it straight on. I try to keep it in my peripheral vision.

I'm not ready for cake and joy yet. I haven't even gotten to full on relief. I honestly do not know what life will look like. I don't know how to be a cancer survivor, especially with the looming fact of high rates of recurrence and continuing biweekly lab checks. I think I will be holding my breath for the next two years. But I have a fair chance of getting to do that. And maybe getting to lie in a hammock with a good book in the garden, to dig my hands into the soil, and taste things at the farmers market, and have a glass of wine with the people who have helped me to survive through all this.

Thinking of gardens and good books, I visited Robin McKinley's blog. And it turns out that her friend and fellow author, Diana Wynne Jones, died today. And besides being a terrible loss for her friends and family, and a grief to all the readers who have loved her books, it was a biting reminder of the realities of life, and death, with cancer.

Part of me may always be waiting to fall off the next precipice. And I am baffled by the idea of living with that fear and also with the grief for all the folks who don't even get a chance to try.

Things You Think When You Can't Sleep

Have you had the experience of being absorbed in a story, and everything seems to be going wrong, events winding quickly to a sad conclusion, and then you realize that there are a hundred pages or more in your right hand, still to be read? The story can't possibly end where it seems it will, and you are relieved to have the reassurance and a bit irked to be pulled out of the story and unable to just experience the tension and uncertainty in the plot.

Well, I would really love to have that feeling about my own story right now. I can accept that this is what my life looks like now. I can bear the losses and the struggle and the sometimes wretchedness, but I can't bear to think that this is the story on the last few pages. I need a few hundred more. It would be so much easier to breathe if I could know that.

On Fear and Vampires

So, I didn't spend my birthday in the hospital. It was actually kind of celebratory and nice, in a low key way, thanks to my sister, who really brought the festivities (and the birthday dinner) to the table single-handedly. Everything was ok.

Everything is ok now, too. Probably. But my counts are just staying weirdly low. Lower than they've been in months. I keep telling myself that chemo is just endlessly strange. And that if I were heading into a relapse the doctors would catch it in my labs (which are weekly again.) But..I don't feel confident. Even the fact that they're having me come in weekly again seems like a reason to worry rather than an encouragement to leave the worrying to the professionals.

The goal is: hold it together, breathe, and remember that there's no point in worrying about something like that before it happens. You can't change it. The worry is a waste of valuable resources. Oh, I hate being scared. But I'm not having much luck at reasoning it away.

An interesting side-effect of fearfulness turns out to be reading ridiculous fluff. Seriously, I ended up reading The Vampire Academy the other day. I'm always up for escapism, but swerving all the way into tween vampire trendiness seems like overdoing. Here's the thing though, it can be a real challenge to find reading material that doesn't have a cancer ambush in the plot. The Actor and the Housewife: cancer ambush, The Friday Night Knitting Club: cancer ambush.
It seems like the go-to way to give your story weight, give your protagonist tragic baggage, or even trim your cast of characters. And so I read Vampire Academy, where there may be a blood disease of sorts, but nobody's holding a mirror up and reminding me of my own worries.

I guess I would probably be safe with the classics of Literature, but honestly, I think the situation calls for a little something frivolous. Also honestly, I don't think I have the mental focus that would require.

Someone point me to a book list guaranteed to be cancer free. Surely one exists.

I'm fighting the urge to make some horrible joke playing off of blood counts and vampires. People don't know to be grateful when you successfully restrain yourself from inflicting that kind of thing. There's no reward in it.

Two Years

This time two years ago I was sitting in a hospital bed. I'd been having weird health problems, inexplicable debilitating pain in my hips, exhaustion, and a low grade fever that just lingered and lingered. I went to the doctor, and then went for blood tests, and then got a call from the hospital where the labs were done, as I was driving home, saying I needed to come back right away, and to check in through the emergency room.

The doctor I saw there painstakingly avoided saying anything about cancer, but somehow, I picked it up from the way he was talking, or something. I was admitted, had a bone marrow biopsy, and was diagnosed w/ acute leukemia and transferred to a different hospital with the right specialists. And I had another bone marrow biopsy, done badly, which as torturous. They shouldn't hurt that way, but didn't know enough to protect myself. And so I sat in a hospital bed by myself, and tried to adjust to the idea that I would be receiving massive doses of a variety of chemotherapy drugs, continuously, for the next three years of my life.

I was just about to turn 25, and had all kinds of plans for the next few years. Instead, well, I have made it two years, and that feels like a pretty solid achievement sometimes. I am so tired, and so sad about the part of my life that I lost. And so scared, sometimes, that I think I could drown in it. My counts have been dropping for weeks, so now I'm back in that severely compromised state where I'm not supposed to do anything or go anywhere for fear of catching a fatal cold.

But hey, with any luck, I won't spend this birthday in the hospital, and that's something. No really, that's definitely something. And I'm counting down to finishing this chemo protocol in months now.

Pegasus, by Robin McKinley

As I mentioned in an earlier post, I received an advance copy of Robin McKinley's new book, Pegasus. I've been reading slowly, trying to stretch the story. I already know the end is a cliff-hanger, and that the conclusion to the story will be a while in coming, as book two still has the author banging her head on her desk, and won't be out until this time next year. But I also know it will be worth the wait, because this is a delicious and magical story. It wraps around you with an intimate and honest narrative voice that makes the fantastical elements seem very real, a voice that I think developed at least a little bit because Robin McKinley has taken to blogging with similar honesty and grit about her own life.

Her blog and the book have some strong points in common: whimsical details, keen observations, and a admirable narrator who is uniquely herself. The story is truly original, and the pegasii are not generic mythical creatures, but believable beings with an intricate and fascinating alien culture. First person narration is tricky, and I used to think that you had to sacrifice beautiful writing if a book was done in the first person, but I am proven wrong by Pegasus, which is beautifully told and as finely wrought as anything the Pegasii themselves might make. The story is a gift, and I feel privileged to be reading it.

Protecting Children from Getting the Wrong Ideas

It’s Banned Books Week again. I’ve just finished reading Lois Lowry’s The Giver, which has been one of the most challenged books in the country several times since being published in 1993. Parents made a concerted effort to have it removed from the reading list at in the district neighboring my own when I was in school.

So there’s that. People never seem to tire of trying to keep ideas they don’t like away from kids. The most recent hot button is the attempt to ban Laurie Halse Anderson’s Speak.

Pulling the books from library shelves and reading lists is one way that people try to keep ideas from harming kids. Editing the harmful ideas out of the material is another. Honestly, I didn’t even know the later was a popular option until I saw it discussed in a YA lit blog entry.

Philip Nel, English professor and children’s literature commentator, frames the issue on his blog. He teaches a course about censorship of kid’s lit that he says is about “what you can and can’t say in literature for children and young adults.” And it seems that if you say the wrong thing, many people feel it is their right and responsibility to ensure that children will never know it.

This treatment canned be used as a fix for most books on the Most Challenged list, but beloved classics are being reissued with a new coat of paint that is meant to obscure the overt signs of values that would disturb most modern readers. Plenty of thoughtful people are considering the validity and effectiveness of this approach, and they seem to be coming to the same conclusion. It is better to supervise how kid’s experience the original than to give them tidied up versions. I agree, as far as that goes, but I still think they’re missing the point.

We are not giving kids enough credit. Yes, they should learn to read critically, and it’s great for them to get to talk about some of what they’re reading with their parents, but if we look over their shoulder at most of what they are reading, we will being taking something valuable away from them. There is an experience you can have of a story that can’t happen if someone is guiding and monitoring your reactions. The personal meaning you find, and all the connections to your own experience. The most important books in my life were like personal treasures. Didn’t we all read these same classics? We grew up to be thoughtful, conscientious people who care about books and care about children and care what kind of people they will grow to be. We did it with those imperfect stories as part of what got us here. The children we want so much to protect are capable of doing the same.