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.