Thursday, December 31, 2009

The Cure: Insomnia

So, for a while, the idea of me writing a book has been tossed around.

Here is a crude sample of chapter one- please BE BRUTAL! I want to know what you it worth it?

Do you ever get Deja Vu? You know, the feeling that you've done something before and you are just repeating this action?

Last night I had a dream. In this dream, I could fly. Just by pushing off from the ground, I could gain enough height to clear tree tops.

There were no other people in my dream. It was only me, and everything else in my town. The streets, houses, schools; everything was normal except for the absence of people.
If I leaned forward and jumped, I could shoot forward far distances. I zipped around town with my arms spread out to my sides like Peter Pan- a movie I watched on VHS when I was child until it no longer played.

Still, I remained in my hometown, alone. It didn't matter what direction I set off it, I would inevitably stay stuck in the city.
It was eerily quiet, no cars, no dogs, no kids at the playground.
I had considered flying up, but the power lines loomed over me as though waiting to snatch me out of the sky should I attempt it.
I finally sat on the ground, frustrated with this ability that I had, but lacked the ambition and courage to put it in action.
I was stuck.
Grounded by the weight of what if- what if I hit a power line? What if I jumped too high and couldn't come back down? What if I couldn't breathe when I got too high?
And there I sat until another thought struck me- what if I don't try, and I stay here forever, alone?
With that, I stood and braced myself.
I shot off the ground like lightening, trees zipping past me, up through the power lines which seemed to cower at my sudden determination.
I was exhilarated. I was powerful.
Higher and higher, the houses became specks in the distance, the clouds caressed my face, tears ran down my cheeks and fell to the Earth below, the last bit of me that would be left behind in the world.
Higher and higher until the sky slowly darkened, and I felt lighter.
Then suddenly, I was viewing the Earth from above, circling slowly like another moon.
And the exhilaration I felt became overshadowed by the knowledge that I was the only entity in the entire universe, and that no matter how far I flew, this would remain true.
That's when I started to fall.
Past the clouds, toward the hard unforgiving ground, the power lines reaching toward me greedily, waiting to snatch me out of the sky.
I tried to scream, but no sound escaped my lips, my flying ability suddenly non-existent.
Just as I was certain to hit the ground, I awoke in my bed next to my husband.
I laid there silently, blinking, willing the world to take shape in front of my eyes.
My husband sighed, rolled over and threw his arm around me, pulling me to him.
I was alive. It was only a dream.
And then a small noise- the type of noise only a small baby can make. A sort of mewling, like a tiny kitten rooting around for it's mother.

And that tiny noise brought the world crashing down.

Thursday, December 17, 2009


Here is the usual "It's been a while" cliche, followed by the boring updates that have occured since the last time I updated my blog...

Except that it hasn't been so boring and mundane, and my life is anything BUT cliche- in fact, I don't think there is even room for cliche when cancer is involved.

That being said, since my last post Charlotte completed her chemotherapy, and went into the next phase of her study, the surgery consultation.

So, Kevin and I met with Doctor Hoover-Reagan, and Lisa Keller today at the Children's Hospital to discuss what our next course of action would be.

We were basically told we have three options:

1. We can surgically remove the remaining part of the large tumor (about two inches by a half inch), biopsy that piece, and if it is cancer free, we accomplish remission. (Also note that there will be remaining tumor around her spinal cord in the spinal column, that particular part is considered inoperable due to its location)

2. We can take the "wait and see" approach, in which we get MRI's every three months and wait to see if anything changes. The negative aspect of this is that if the tumor would start growing back, we would be in for a helluva ride... We would run the risk of the cancer being more resistant to chemo, and possibly paralyze her again- assuming it grows back into the spinal column.


3. We can do a simple biopsy, where we would run the risk of accidentally taking a sample from a dead part of the tumor and missing a "live" part, thus getting the false impression that the tumor is dead, when in actuality it's still alive.

So, how do you decide?

This isn't the doctor cutting your child's umbilical cord, this is a real-life slice and dice surgery, with general anesthetic and stitches, blood and guts and vital organs. One sneeze that could cut an artery by mistake. surgery?

So you decide to wait it out, take the "safe" road, only to find out later you made the wrong decision and now your baby could die?

Well, I'm not going to keep you in suspense. Kevin and I did decide to go the surgery route, though I can't really tell you why. It's not as simple as a cut and dried pros versus cons situation, but more of a title thing... To me, at least.

To me, I want what we have been fighting for since day one... our remission.

Lisa is going to call us in the morning to see if we can get her in Monday- if not, it will have to wait until after Christmas.

I didn't get what I really wanted for Christmas this year, but at least I still have a baby to smile at me, who's sweet tuft of hair that's finally growing back tickles my nose when I smell her head, who's toasty hugs and sloppy kisses make every day worth waking up to.

And as usual, when I know more, the rest of you will.

Sorry this isn't as cheery and upbeat as usual, I'm sure you understand. It's taking the last bit of my energy to update all of you.

We are all okay, just tired and drained.

As it turns out, being disappointed takes a lot out of you.

God bless, and I will update tomorrow when I hear more.

Kristi Rufener