Edgier than Cancer

So, like most people with a horrible disease, we have a Caring Bridge site. And I love it. It's an addiction, really. Every time Lindsay is deep in a benadryl or demerol coma, I log on and see how many people have read and who has signed the guestbook. Some days, the guest book is filled with annoying self help style advice - Take Care of Yourself, Trust Your Doctors, Don't Forget About the Other Child. What, I have another child? Shit.

Which brings me to this blog. Which I've neglected. I started it because I wanted to be able to write about cancer. Whatever the hell I felt like saying. About being a mom, about being tired, about being scared as hell. Yes, hell, is a word I have censored in my Caring Bridge posts. Also "fuck". As in the following, which I chose not to post:

When Lindsay was first diagnosed with AML, all I could do was to walk through the halls of the oncology unit saying 'FUCK' to myself. I would try to think of another word, try to articulate my feelings and fears into a well-phrased, four-letter-word-free statement. But there was no other word. Fuck. That summed it up. I remember the advice of my college professor, Doug Fry. "Foul language" he said "is for people who don't have a vocabulary that is advanced enough to state what they really mean. I think I have a decent vocabulary, but it fails me now. Fuck.

Television is Raising Our Kids

On August 18, our lives took a radical shift. Lindsay went from being the healthiest child ever - no colds, good appetite, off the charts in height - to being a cancer patient. With that radical shift came a shift I never could have anticipated. The era of television.

As an infant and toddler, Lins was raised in a practically TV free home. We didn't turn the TV on when she was awake, and we made a point to never let her watch "Baby Einstein" or any other children's programming. When she turned 2, we started to have occasional TV "special treats", but they were quite limited. Maybe for a long trip (say, from Wisconsin to North Carolina) or if she was sick. Still, TV just wasn't a big part of life.

In the spirit of radical unschooling, I have felt that, at some point, television needs to be a choice the child makes. If for no other reason, I believe depriving and restricting something that is potentially so addictive only leads to the addiction. Still, I have also believed very strongly that TV and food factor into overall health. And health is an area where my unschooling ideology is less than radical. So, I try to provide healthy choices of food rather than dictate what can and cannot be eaten. And I try to limit the access to a television, ie spend more time outside, so the television is less of an issue or temptation.

Enter leukemia. There was a television playing some inane cartoon in the pediatric ER suite. We left it on. After all, we sat in that room for 4 hours with a 3 year old and a 18 month old. Neither had had more to eat than a graham cracker. And we were hearing words like, "Leukemia" and "don't worry, the prognosis for childhood cancer has improved dramatically over the last couple of decades". A meltdown was imminent. If not the kids, then us.

For the first few days of Lindsay's hospitalization, there were lots of people in and out of the room. Lots of finger pokes, catheter checks. Everyone was a stranger. Everyone was terrifying. So Thomas the Tank Engine was our constant. Our friend. Played over and over, to soothe, to distract. I repeatedly, nervously told the doctors, "Really, she never watches TV at home." How funny that, while they were telling us our daughter had cancer, I was worrying about their opinion of my parenting.

And now, Lindsay is hospitalized for a month at a time, with only a few days home in between each round. And most of that time she is restricted to her positive pressure hospital room. Many times she's hooked up to fluids. So we paint. We play lots of games - monopoly, uno, yahtzee, sorry. We read. We play on the computer. But even with all of that, there is still all the time in the day where a normal family would be outside - playing in a park, going for a walk. So now we turn on the TV.

Michael - 18 months, has been watching his fair share too. Will he be less intelligent for it? More of a bully? Overweight? All I know is that we are a family of four, with a toddler and a preschooler, living in a hospital room for all intents and purposes. If the tv helps us get by, I'm going to try to stop worrying. Instead, I'll listen to Michael singing "Doe a Deer" with Julie Andrews, and think of everything that he's learning that I'm too stressed to teach him right now.

When cancer does the schooling

Lindsay sailed through the first 2 1/2 months of her AML chemo. They told us she would need a feeding tube 3-4 days into the process, but she just ate right through. They told us she would have nasty infections, end up in the PICU. She had two day-long fevers. They said she would be tired, lethargic, develop sores and need morphine. She played, danced, sang, and begged to go home.

Perhaps we became a bit overconfident. On the surface nothing changed. We continued to Purell at every turn. Lindsay wore her mask on the few occasions she was allowed to leave her positive pressure room. We posted signs and reminded volunteers and staff to wash their hands. We discouraged visitors. Most importantly, we avoided confidence in our writing and speech. We never said, "Lindsay is doing great!" Instead, we wrote, "Lindsay has done well so far."

But, after 2 and 1/2 months, I decided to start this blog. And I really wanted to name it unschooling cancer. A play on "schooling" something. Since we're unschoolers, I thought it would be appropriate. But even as I started the blog, I worried that the title was a bit cocky. Something of a jinx itself. And just a few days later, cancer started schooling us. Or, perhaps, unschooling. But I don't think so. It doesn't feel like unschooling. It feels rigid, inflexible, but there is also a wild uncertainty to it all. So perhaps a touch of unschooling.

Nonetheless, cancer has reared it's true and very ugly head. We ended up in the pediatric intermediate care unit yesterday with a case of pneumonia. We have slept intermittently, but mostly spent our nights watching Lindsay's respiration, taking her to pee after lasix, and changing her bed sheets after diarrhea. It's been a rough road. We've been schooled.

Halfway?

I thought my first post would be all about AML, Lindsay's story, that sort of thing. But here we are, at the theoretical halfway point for chemo. And I can't blog about cancer today. Because today Barack Obama went from being presidential-candidate to President Elect.

And I am filled with pride, joy, hope, optimism. Pride is the strangest piece of this. I am so proud of my country, and I haven't been in a long, long time. Perhaps it was dubya was good for this country, because he drove us into such an abyss that we have embraced this new face, this new voice. And, perhaps, we would not have embraced him otherwise.

Of course, I'd rather have risked it without the past eight years. I suspect Mr Obama, with his eloquence and grace would have won our hearts with or without the specter that is the dubya presidency. But maybe not with such open arms.

So, tonight, as Lindsay sleeps gently in her bed, her absolute neutrophil count at 7, I have a little hope for our country, at least.