Wednesday, July 30, 2014

Bad Hair Day

Last week the girls had auditions for Little Mermaid Jr at PACK. The practiced their little hearts out and I was really impressed with how well they auditioned- even Bella, who up until a few weeks ago I was convinced was tone deaf. Turns out the deep little tone she likes to hear herself in- isn't her only tone and their voice teacher is nothing short of a genius because she actually can sing for him in this really cute little voice.  Lily and Kiera both got call backs which was a new experience for us- and a positive one. They aren't quite ready for the major roles- even though they are pretty sure they are- but they are paving their way. I'm mostly excited that it's a show I adore- because for the next three months it's all that will be playing as we drive back and forth.

At the first rehearsal, they did a read through. I sat and listened. One little girl just kept staring at me. I get used to it. It's so much easier to deal with kids than the adults.  When the parent next to me left she relocated herself to the chair next to me, continuing to stare.



Her script lays closed in her lap, she is petting her hair- just like Ariel in the movie, so I ask her-Can you follow along in your script?

Nah, I can't read any of it. She has the most incredible glass green eyes. I don't know maybe they are hazel- but they are clear- like sea glass- I've never seen anything like them, they are amazing.  I smile and open her script and point to the words.  She leans in and whispers I just got a haircut. For the summer. I had A LOT taken off. 

Wow- that's cool I tell her. She smiles. I spend the rehearsal telling her when to turn the page and answering her questions about the show.  When I relay the story to Phil later he looks at me and laughs- so you never told her what happened to your hair?  Nope- she didn't ask.

For the past few months the conversations I have with people centers around my hair. It's kind of silly because even though I took care of my hair- it never dominated every discussion as it does now. I know people are curious and I prefer it to the quiet stares- but sometimes it feels like it's all I am now.

It's so soft. 

It's such a great color.

It's coming back in. So you're done with chemo?

I wish. But we are on to a new routine. A routine that this far has me feeling better for a couple weeks more.  Monday I just had Herceptin and Pertuzumab- both monoclonal antibodies and far easier on the system and I get those every 3 weeks from now until forever. I got a shot to keep my bones from self destructing and another shot of B12- which I highly recommend. That stuff is gold. And not having abraxane is gold. But all that glitters is not gold and for now, every 6 weeks I will still get abraxane- to keep the glitters away. It also will keep the hair away. Which kinda sucks.

As we sat in chemobay- it was a different crowd. We got up early to get done early.  We got the corner chair- because it's not that we aren't social- I just prefer to meditate or sleep while I get drugs pumped into me. Plus almost everyone else here has the same hair as me -so what on earth could we possibly discuss? Phil has a new app that has a million levels just waiting for him to dominate. Sometimes we play a little scrabble. A woman walks in with a toddler in a stroller.  Children are never allowed in the chemobay so I kinda worry about what she has going on that they overlook this rule for her. A very big slovenly child and by child I mean 20 something- who we had previously seen snoring away in the waiting room- shuffles in. He plops down next to his mother in one of the chemo recliners pulls the tv around and turns it on very loud- oblivious to the dozens of eyes following him.  I hadn't realized it was bring your kids to chemobay day. I look over to the toddler who looks at me and I shrug.  He pats his hair and shrugs back. I look over to Phil who witnessed the exchange and we both look back to the toddler. He again rubs his brown tresses, shrugs and looks back to me.

Phil- SO um, I guess he noticed your hair.  It is pretty cool.   Then he rubs my head.  The little one rubs his head in this strange monkey see monkey do game we have going on. I laugh because the only alternative would be to cry and I'm stronger than that. And then I take our chemobay pic.

Yeah- that's kinda how it goes these days- even my nonverbal conversations with toddlers center around my hair or lack of. I like my new hair- my butch cut as my mother called it. It was soft. It kept my nugget skin shielded from the sun and air vents. But it was starting to come out. My head had that burning itching it gets every time after abraxane- the nasty little necessary evil that it is. I was kinda hoping it would just thin a bit. But last night my shoulders and chest were covered in fine layers and I felt more like a family pet. I took a shower to rinse it off and gently patted my scalp. As I pulled the towel away, I was again coated in a shedding of little hairs. I don't want to do this again and again and again. I had so hoped this routine would let me keep my little hair. Just a little to protect from the sun. But no.

It had been a good day physically, but I was exhausted emotionally. I had a friend having surgery. Another who was recovering from surgery, another whose husband was rushed to the ER for a possible heart attack. Friends that I would normally drop everything to be at their side and I couldn't. I'm barely keeping up with all our activities. Not just my hair was falling out- pieces of me were falling apart. And yet this was so stupid compared to the crisis in so many people's lives.

I asked Phil to shave it. It was long enough and thick enough still that it was a process. I kept my eyes tightly closed. I hear Bella come in, her little hand on my back. It feels heavy. All of it. It's not just the hair. Its the reminder. Not being what I want. Things not being easy. It could be worse. It could be worse. It could be worse.

What's wrong with mom? she asks as she pets me.

She is not pleased with her current hair situation.  Phil responds.

The little hand still petting. I thought the water from the shaver was dripping, but its coming from her eyes. Does it hurt?

Yeah- Phil tells her- It hurts.

It's really not just the hair or the bad hair day. It's the learning to live with cancer. This is how it is and it is about making it work. Just like an unruly cowlick. Or curls in humidity. I don't have to worry about that. Sometimes things hurt. On lots of levels. So I let the hairs and the tears go because I hope as each one leaves so will some of the hurt so I can focus on moving forward and not on that. Because it could be worse.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)