Friday, June 26, 2009

Behind Bars

I haven't brushed my hair in two days.

My coffee sits untouched on an adjustable bedside table beside a Vogue magazine and a pink stuffed elephant that says Lil' Peanut.

Today started as a good day.

I was in high spirits, having decided I could be one of those other moms on this floor that was along behind her kid as he scoots down the hall on a foot powered bike. She smiles, even though he is wearing a mask to protect him from infection while he is on chemo.

I can do that, right? That's easy enough.

I feel like I have been inducted into some strange cancer society where you learn words like Zofran, (an anti-nausea medication), or platelets (her white cell count, which is going to drop in the next few days and we will have to limit her visitors so she doesn't catch something she can't fight off).

So back to me starting my morning in the right direction- I had decided we should get Charlie out of her "sick room" and out for a walk. And I thought maybe we could walk to the cafeteria in the other hospital (they are all connected here). And the nurse says she doesn't think that will be a problem. So she comes back immediately with a nice stroller, and I am bouncing Charlie on my knees and talking about going for a walk.

Then her nurse comes in and says she is more than happy to let us walk up and down the hallway, but we can't leave this floor. I ask why, and she says because of the extensive monitoring she is on. In case her breathing changes, blah blah blah. I don't hear much of it to be honest.

She leaves me with a lump in my throat. We are prisoners in this hospital.

My husband gently offers to put her in the stroller and walk with me, but I forget myself and snap at him.

"I have NO DESIRE to walk the fucking fifteen feet of this floor!"

And I put Charlie back in bed.

Because that's what we do here. Everything is in cycles now. This is her Dex cycle, this is her sleep cycle, this is her feeding cycle. You are either holding her, or rolling her a towel to train her legs to be back in their normal position.

You are either talking to doctors who's names you can NEVER remember, or you are sitting around waiting.

You family and friends remind you to eat, and everything tastes the same.

You forget you have another child, and the guilt that she has slipped your mind consumes you, until you realize that in THAT guilt you forgot the one that is in the hospital right now, and then THAT guilt consumes you.

11:45 today- she drinks her contrast solution, and they cath her.
2:45 today- she has a bone density scan.

She has to have morphine before I can pick her up.

Her stomach protrudes where the tumor is pressing- and my God, how come I NEVER noticed it before???

Sun up- sun down- She will lose her hair. Her feet are tight like she has rubber bands around her legs, and I am fascinated by the perfect imprint my thumb leaves on her leg.

We ask questions that I can't remember in five minutes, I accidentally fall asleep and no one wakes me when the doctors come by.

I am livid the rest of the day and force myself to stay awake because I know no one will wake me if they come by again.


This is the lunch cycle where all of the parents on this floor line up for free food from the Ronald McDonald house.

This is rounds- where all the doctors stop outside your door and talk about your child like you aren't standing right there in front of them. Like she just a number in the statistics of cases they get a year.


The number of cases that are diagnosed nation wide every year. That's how rare this cancer is.

And then the oncologists who come by to tell me the rare side effects of chemo- how it can cause blood pressure dips, how it can cause another cancer, but not to worry because these are just the RARE side effects...


Isn't her cancer rare too?

Then telling me the side effects are rare really doesn't make me feel any better.

Eat, sleep, cancer.

And this is our life right now, in this hospital prison, on makeshift beds, in our makeshift world.

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