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Saturday, August 24, 2013

A Hairy Week (a long post, but making up for the radio silence...)

Wow. I just counted and It's been exactly 51 days since my last blog post on July 4th. Why so quiet you  may ask?

In the beginning, I was just tired and feeling crappy. Six chemo treatments will do that to you. (For those of you who have been following me along this journey, my voice came back pretty quickly after the sixth chemo treatment, probably a disappointment to my family but a welcome development for me.)  I started feeling a lot better about three weeks out, right about the time that  the boys were done with camp and it was time to launch Camp Mama. I had high hopes.

"We're going to have craft time, screen time, and sports time," I announced.  "Just like a real camp!"

What we really had was mama working half the day and the kids playing Wii and Ethan asking, "When's craft time, mama?" So I threw in some field trips for good measure.

Then, last week , I went away to the Vermont College of Fine Arts for a writing conference, also known as Camp Amy. You may have seen the pictures on Facebook. It was a wonderful, soulful experience, where I met new writer kin and immersed myself in the literary life for seven days. My kind of fun. And then, last Sunday, I returned home, to Camp Mama.

Poor, defenseless me, this week.
You might be able to imagine where this is going. Let's just say it was a tough week. Reentry after a vacation (especially a solo one) is difficult at best. But I think what the week in Vermont did for me was remind me that I was not put here on earth just to serve others...but also myself. It tore down all my defenses. And so it's taken me about a week to build them back up, to readjust to the demands of two little boys and one employer--a nice, flexible employer I'll add--but still, I had a lot of catching up to do. I got so bogged down in trying to juggle everything that I spaced on my Herceptin appointment yesterday (that's the non-chemo targeted therapy I'm supposed to get every 3 weeks until next March). I was enjoying myself at a friend's swimming pool yesterday when the nurse called looking for me. First time I'd done that, but I guess when you're this overwhelmed AND you're enjoying life after feeling crappy for months AND you're brain is already at a disadvantage due to chemo, mistakes happen.

I also noticed this week that my hair is growing back. I'd say about a half inch all around (although I'm terrible with measurements). Currently, it's a fine fuzz and black, rather than the brownish-auburn I used to sport. No gray that I can see yet. I've heard from other survivors that sometimes the way it initially grows back is not the way it will stay. That if you've had straight hair it might grow back curly, or vice versa. I'm not sure what to expect, but I hope it doesn't grow back like this (WARNING - disturbing but hilarious. Do not watch this video with the kiddies).

I have to add that being bald has grown on me. Before cancer, I'd devoted way too much of my life and my money to my hair. I was always looking for the perfect cut, the perfect hairdresser, the perfect product to tame my thick, wavy locks into submission. But now I'm spoiled. It's been soooo easy being bald. A quick shampoo, throw on a wig or a scarf (a pre-tied one as I never learned to master the art of scarf was so frustrating that I actually cried over it once) and you're done. Unlike some other bald women, however, I never really became comfortable flaunting my baldness. Twice recently I've run into bald women while shopping. Both times I was wearing my fake scarf and they were bald as pool balls and I smiled at them, only to be ignored. Which makes me wonder if there is discrimination in the cancer/bald world...but I digress.

Only this  week was I brave enough to flaunt it. We were at the YMCA. I'd brought my swim suit so I could swim with the kids after their lessons. I also brought the hot pink bathing cap I'd purchased to protect my head from the sun while swimming outside this summer. I hate this cap. Putting it on is like adhering a condom (I imagine) to my head. So when I realized we'd be swimming inside, I decided to finally go without it. We were in the locker room, and when Jonas noticed I was walking around without a pink head, he said, "Put your cap on mama."
"Why? I don't want to wear it."
"I want to you to wear it," Jonas said. "Put it on."
"Why?" I asked again.
"Some might think you look funny," Ethan said.
I realized for the first time that my kids were embarrassed by my baldness. This was likely because I'd never ventured outside the house without something covering it up.
"I don't care what other people think," I said, sort of believing myself.
"Put your cap on mama!" Jonas whined.
I put it on.
But as we finished preparing for the pool, I kept complaining. "This really hurts my head guys,"...."I don't really want to wear it." Until finally Jonas said, "OK mama, don't wear it."
So I didn't.
And while I'm pretty sure my kids didn't notice the people who glanced at me in the pool, or the little girl who blatantly stared at me, twisting her neck as she swam by, I did. But really, I didn't care very much. It felt freeing. And I hoped it was a positive message for my boys (and others, perhaps) - showing them that it didn't matter if you were bald, and that I didn't care, for that moment and in that place, at least, what others thought. Every so often I'd  lean my head backwards into the water, enjoying its gentle, warm caress on my almost-bare skin, and smile.

This makes me smile too. If you haven't seen it yet, this video is by the talented Alastair Moock and his daughter, who has leukemia, singing the praises of being bald. Share it with anyone one you know who might benefit from it.

As for moving forward, I start radiation the day after labor day. Should be a lot easier than chemo. Lots of people ask "are you in remission now?" My doc says, and I stress the quotes, here, that I'm "cured." But no one really knows or can say for sure. All I know is that  I'm on the other side, for now, from the worst of it. The scariest parts. And, as the great James Brown once said, "I feel good." What's better than that?