Friday, May 30, 2008

Reality Bytes

So, yes, we are in the hospital. Counts were good, so here we are. She got her first chemo last night at 8 pm, after being flushed with fluids for about 6 hours. Etoposide went fine both yesterday and today; no reactions. Have been kept hopping at all hours to get LW on the potty each time she hollers, but no accidents. As Rev. Christine said, better lots of peeing than vomiting. LW could have both, but so far so good. No nausea. Some leg pain, and other than a brief "high" on one of the drugs last night that gave her the munchies, not much of an appetite.

But she's strong and her humor is good. We've enjoyed playing together. We talk long walks around the pediatric oncology floor. Everyone she comes across, patient, doctor, nurse, or family member, she asks, "And what's your name?" They smile, and tell her. "Oh!" she says. They ask hers and she tells them, carefully enunciating each syllable. I am proud this friendly sprite is mine.

And ... her hair is falling out.

If you haven't gone through this, you might be saying, "So??? It's just hair!" Even if you have gone through this, you might say that. I know, because first time around, I did. And when new cancer parents worried about the hair loss, I privately thought, "So??? ... C'mon, get your priorities straight!"

Which just goes to show you that you can't know how you're going to respond to something til you're actually there. Because this is kinda ripping a new hole in my heart.

"It isn't about the hair," guessed the DRE-BFF when we talked. Yup. Too true.

It's not about the hair, per se. It's about becoming, visibly, a Cancer Kid. Because we have a cultural identity we give to these small bald circus freaks (to quote House). Strong, brave, quiet ... and acceptable to die.

I mean, no, we'd never consciously say it's okay. But we can accept it in a way. Because it's horrible, it's unfair, but sometimes it happens ... to those children so foreign from our own.

I'm not tossing rocks here. I do it, too. We just have a different feeling about kids that look like this. The bald head is a warning sign. Danger ahead. Heartbreak. And so we see the picture of the hairless, eyebrow-less child, and we hear that they died. It's sad, but not shocking.

But then ... you see a picture of them before diagnosis. And even for me, someone who has now seen so many ... it's a punch in the gut. It's so shocking. They were a normal child! I mean, I know intellectually that they weren't born skinny and bald, but still, it's a shock. They were normal. They looked like any kid. My kid.

And now my kid ... is going to look like a cancer kid. Her hair isn't falling out in chunks, it's more like shedding. I run my fingers through her hair, as I do all my kids, and fine strands stick to my hands, coming away from her. Eating dinner, she makes a sour face and spits. Hair in her mouth.

And I really, really don't want to face it, but because I don't have the benefit of shock and ignorance, I've been living in this world for more than 2 years now, when my sunny self says, Yes, but it will grow back, my shadow self says, Will it? Will it have the opportunity to grow back? Will she end chemo and be fine, No Evidence of Disease, long enough for her hair to return?

It's just hair. I thought.


uumomma said...

My dad had so little hair--I used to tease him about being sure to come the five or six he had across his head (but it was really more than that). I didn't see him during his first chemo rounds (living across the country, by the time I saw him, it had all grown back). When we went to visit in January and I saw him completely bald for the first time, it was just that sock in the gut you talk about. This is real. He may be laughing and joking, but he has cancer! And that's my father, not my child. So there is no comparison. Just feeling the need to say thank you for this post. The explanation makes total sense, and I would not have even considered any of this without your voice, touching truth. It's never just the hair, is it?

ms. kitty said...

Gee, I think about all the things hair means to well humans---it's self-esteem, beauty, a crowning glory, something we fuss with endlessly to get it right. It never occurs to most of us what it would be like not to have any, or to have it falling out because of some medical situation.

To be the mother of a child whose hair is falling out would be like being in a different land, where hair had another meaning entirely, a meaning far beyond a "bad hair day".

You're all in my heart.

Christine Robinson said...

Hair is a big deal.
It's time for super cute hats...the kind that will make everyone who sees her smile, and gives her a big choice about what she feels like wearing today.

Starting a Watermelon hat today. Anybody crochet out there? Very cute bear hat pattern on the internet. How should we get them to you?


My Brand Of Crazy... said...

(((LW & LE & everyone of course!))

I'm glad she is responding so well and is in good/smiley spirits!
It's never just about the hair...cancer encompasses so much more than anyone can imagine, without having been through it themselves or being close to someone that has.
Definitely time for cute hats! And face painting!
It's as simple as getting a regular ol' kids water color paint set from a toy store to use. And it's waaaay easier than ya might think. A pretty flower or butterfly or kitty nose and whiskers, etc on her... will bring a smile to her face and all of those she encounters in the hallways! And water based, typically means no interactionwith any of the meds, but ask her doctor just to be sure of course! Not to mention, it dries quickly and comes off easily with a wet papertowel!
Also, I read the following article and immediately thought of LW, myself and all other cancer patients in the world:

Hugs to you all!

Nancy said...

Big hugs for all of you. I can't begin to imagine what this is like for you but am glad you can share your experiences this way. It's very powerful.

*Handing you a freshly-baked, cheesy e-casserole via the internet*