Thursday, April 26, 2012

The Wrong Story

This is ridiculous,
What am I doing here?
I’m in the wrong story!
--Stephen Sondheim, Into the Woods

 Life has been kind of Sondheimesque here recently, with plot twists and ironic turns and moments that probably contain some kind of bittersweet life lesson, hold most of the sweet.

Maybe it’s a midlife crisis, maybe it’s just a reality check long overdue, but I keep getting this weird, almost out of body sense of “How the heck did I get HERE? I’m in the wrong story!”.

I suppose I am supposed to go get Botox or some kind of tuck or lift or implant. If I was a guy (or, more accurately and less gender-stereotypically, less speed phobic) I would get a motorcycle. I have considered the ill advised tattoo. But mostly I’m just overwhelmed a lot of days with the sense of being in the wrong story.

 I know. This is a road that leads to madness. Hey, I did say it was a Sondheimesque season here. At least on the road to madness the way is clear…the light is good…ack, Must. Not. Burst. Into. Song. And the next line is a lie, I DO have fear. Even if this is nowhere NEAR the story I thought I’d be in, this is the one I got stuck in.

Still, in this last week my mother in law gave us a picture book she found somewhere…and it was written by someone in my old writing group, illustrated by another writing group member. Somehow, in 2010, these two wonderful, talented ladies managed to work together (not normally the way things work in children’s publishing), and they created this beautiful book. I was so tickled for them, so happy…

And in the same moment I felt a profound sense of a road lost to me in 2004. That for me has become the road not taken, not because I looked down some path and chose the other, just as fair, but more because our family got sucked into the vortex of the path that Nobody Wants to Follow.

That part of my brain, the children’s author part, went silent in 2004, I held on for another year, trying to write, but I couldn’t, I just had no voice anymore. The story of mine that was included in an anthology last year was written before G got sick. Publishing moves so slowly. And our family’s personal story had no time to wait around for publishing to catch up.

I see friends who still have lots of little kids, and I realize that yeah, that story is done for us too. Friends who have moved on to adventures in other places, with new friends who are happy and cheery and yay, friends who don’t bring an elephant into every room…new opportunities, etc….and we are still here, stuck in the morass of this story we never chose. The house I planned to have…yeah, that story changed, too—and some of that is ok, it’s not all bad, it’s just not the story we anticipated. I know some of this is the Pinterest phenomenon (where you look at gorgeous things and think, hey, I have NEVER knit a cauliflower chandelier out of recycled materials and veggies, I am a failure!) , but some of it is just the realization that the parade really is passing us by.

And really, don’t call the Waaaaambulance. It’s not like I feel sorry for us, I’m just kind of like WHAT THE HECK? mixed with a growing sense of mad. I’m not even sure what I’m mad AT. I’m not sure what to do with this whole idea, other than sing Sondheim over and over. Badly.

 I know that life is fraught with these sorts of moments, I do think God laughs (and not a polite laugh, a mighty guffaw) when we plan ANYTHING. But geez. If I got this book, our story, out of the library, I think it would be like the time I tried to read The Gulag Archipelago. Yikes. I got 300 pages in and said, “you know, there is no way this nonfiction book about Soviet prison camps is going to end well, these 300 pages have been BRUTAL.” And I stopped reading.

Obviously, stopping reading is not so much an option here. So here’s the next moment, figuring out how to make peace with the story where it is.

I know that technically the ending is unwritten, but I really, REALLY don’t like where this story is going. And maybe it’s a midlife thing, but I am kind of whomped with a deep sense of We Only Get One Shot at life.

So how do we work through the story we’re in? How do we make peace with this? How do we take this story, even if it’s ultimately more Gulag than Green Gables, and live it with gusto? People survived the Gulag, and that was WAY WORSE that what we are living. At least our smite is random, not inflicted by other people.

But how do we make peace with this moment, this reality, our shrinking social sphere, the fear that has taken up permanent residence in our guest room? How do we do this?

Or, to quote Sondheim again, how do we figure out, “Who can live in these woods?”

If anyone has insight on this, I’d love to know…humanity will thank you, I am a menace right now, an approach to the story that really isn’t super awesome for anyone…

Tuesday, April 10, 2012

The Little Pills That Wouldn't

The Little Pills that Wouldn’t

“…And the little pills said, “we cannot inhibit the kinases, not even one”, and they rolled to the bottom of the hill.

But the doctor said, “Little pills, the good little boys and girls on the other side of the mountain are waiting for good food to eat and toys to play with and extreme inhibition of their kinases, also some whomping of their vascular endothelial growth factor if you’ve got the time.”

And the little pills looked at the mountain. The little pills thought of those boys and girls waiting for multiple kinases to be inhibited. They thought of the growing blood vessels and the busy pathways. The pills pondered and thought and pondered and thought and finally said,

“Nope. We will dance the Macarena with the kinases and shower them with VEGF. They will be Kinases Gone Wild, and MTV will send us a contract for a show and the boys and girls will be famous for 15 minutes so they won’t care that big picture wild kinases and VEGF out the wazoo could be a serious problem. Booyah!” And they blasted over the mountain like they had little tiny jetpacks built into their smooth, round selves.

And that is the story of Sorafenib, the Little Pills that Wouldn’t”.


I cannot fathom why I never successfully broke into children’s book writing.

I know I said I wanted to post more…and then all the words got sucked away. Alas.

But from my cave of seclusion I have come to realize a few things. While I am literally scared unprintable-less by the recent turn of events, the need to be calm for my G has become pretty much the defining feature of our days. That said, here are 10 things that are true:

1. I kvetch about the Polyfill invasion, but a giant stuffed animal is instant gratification for a kid who just failed chemo #4. Giant animal with note linking it to a much loved teacher who passed away from a brain tumor years ago…major bonus points. She smiles…Win!

2. I almost don’t need to hide from humanity, if I go out in public I’m in such a fog I inadvertently walk by people without seeing them, truly without even realizing they are there. So if I did that to you and you did NOT call out “Hello!” to get my attention, forgive me…I wasn’t shunning you. I really didn’t see you. I need one of those “Iceberg! Dead Ahead!” guys. Although that didn’t work out super great either, right?

3. But if you come to our door or call my phone…I am hiding. I am sorry. Talking is hard. Typing, less so. Even if you are carrying 2 giant stuffed animals, one for G and one for her Super Sib. Hey, Super Sib is also a Super Door Answerer.

4. Unless of course you are comparing the merits of Dance Moms Miami vs. Dance Moms Pittsburgh. Puhleeze, the guys in Miami can do pirouettes. The Pittsburgh lady screams. End of discussion. And no, I never watched either of those shows. Ever. I am just guessing. Ahem.

5. To my hero kid, there is a silver lining to even the most craptastic of circumstances. Today’s observation, she realized she can wear heels now that her feet won’t be blistering from the Sorafenib. She added a loud “ALLELUIA!” to that statement. We began looking for silver graduation shoes in platypus sizes tonight. Can I get an amen?

6. Also realized maybe we better practice WALKING in said shoes if we actually buy them. Growing multi-focal tumors + visual impairment + the much longed for 3 inch heels may = ER.

7. When I am really stressed, I don’t eat chocolate. Chocolate is for the lower colors on the Homeland Security scale, like green, blue , and yellow. Once we hit orange, like we did last Thursday…even I can’t eat chocolate.

8. Yes, I had to go look that up, I only remembered the orange.

9. Eventually I get past that and make up for lost time. Did you KNOW Amazon sells a 4 pack of Cadbury mini-eggs for only $10?? A bargain!

10. Even though we are utterly, completely devastated right now, like ol’ Rodgers & Hammerstein pointed out, we’ll never walk alone. We are so grateful to everyone pulling for us right now, and we are so sorry this is causing you all such pain. Seriously, even as we’re getting the results, staring at the screen, both Himself and I are trying to figure out How the Heck Do We Break this to Everyone…

Here’s hoping that the next book in our series rots less than “Sorafenib, the Little Pills that Wouldn’t” …

It didn’t even have good illustrations…