Your Hair Looks Great

Guess who had a haircut!
Ok, I don't really think I can call it that, maybe a trim.
Nope, probably not that either.
My friend, who also does hair out of her home, cut a tiny bit of hair off the back.
Maybe between a 1/4 and an 1/8 an inch.
Almost not worth mentioning,
but I was excited about it.
It is starting to get a bit mullet-ish looking.
Ryan does love my afro when I wake up though.

I read this the other day and thought it felt pretty actuate, kinda long and a little harsh, but true.
I am struggling with the way my hair looks.
Even though everyone tells me it looks cute, I don't think so.
I don't really feel like me when I look in the mirror.
I miss hair clips and pony tails.
I miss my long hair.

Your Hair Looks Great
By Beth J. Caldwell
When I was a senior in college, I went home for winter break and decided I wanted to cut off my long hair.
It had been long for a few years, and I just wanted to do something different with it.
So, I went to my mom's salon and told the woman I wanted it cut short.
The conversation went something like this:

Me: I want to have it shorter.
Her: Super! You'd look great with a shoulder-length style.
Me: No, I mean short.
Her: Like a chin length bob?
Me: No, short. Like, above my ears. You know, short.
Her: Did your boyfriend just dump you?
Me: ...uh, no, I've been single for a while now.
Her: Are you flunking out of college?
Me: What?!?! No!
Her: Are you coming out or something?
Me: No, I'm straight, why do you keep asking me these questions?
Her: Because usually when people want to go from long to super short, it's because they had something bad happen or they're trying to make a big change in their lives.
Me: Wow. No, the only change I want to make is to the actual hair.
Her: Are you sure? Because, if I cut it that short, I mean, it'll take a long time to grow back out.
Me: Yeah, I'm sure. Seriously, can I just have it cut now?

Honestly, I got asked less questions by the minister when I was getting married than when I got that haircut.
People take their hair super seriously. A lot of our identity is tied up in it.
Which is why it seems to be the thing that people focus on when cancer happens.
I never really thought about it that much until my hair fell out during chemo last spring and
suddenly, my hair, or lack thereof, was a subject of conversation all the time.

I hate my hair now, because it wasn't my choice.
I didn't get asked 10,000 questions by my oncologist about whether I was sure I wanted to go bald.
Instead, he just told me the chemotherapy drugs would make it fall out.
Cancer does that to you.
A lot of the choices you used to get to make, you don't anymore.
Hair is just the most visible one of them.
I get zillions of compliments on my new 'do.
Even when people know I hate it, and even when they know I don't feel better
when they talk about my hair, they seem to be unable to stop themselves from saying how awesome my hair looks.
I get told I look great by practically everyone I know.
I have been trying to understand why people seem to have such a need to comment on my appearance.
Why do we tell the cancer patient "you look great"?
Why do we celebrate when a cancer patient doesn't look like Skellator?
I think it's this: When you have cancer, or any other life-threatening or terminal illness, people want you to be well.
They love you, and they don't want you to die.
So, they cling to every scrap of hope that you are going to beat your disease, and looking like you're not dying gives them that hope.
But the truth is, you can't tell that someone is going to be cured just by looking at them.
Lots of us folks with metastatic cancer are living with our disease for now, and we look and feel OK for now, but the truth is that we're going to die of this unless there is a miracle breakthrough in our now-shortened lifetimes.
That our hair is growing back isn't necessarily the sign of wellness people assume it is.

And for me, living with everyone else's hope is hard. I'm living with my doctor's hope that science will find a cure in time for me, when we don't seem to be putting enough resources into research. I'm living with my husband's hope that we'll die together in a nursing home in our 90s, when even the most optimistic estimates of my life span rule that out. I'm living with my former coworkers' hope that I'll get well and come back to work with them, when I am probably going to be too busy with doctor appointments the rest of my life to ever hold down a job. I'm watching everyone around me needing to hope I will be well and somehow beat this thing, but knowing I will let them down someday.

And so they say how great I look right now, and how cute my hair is, because they have hope. And inside I want to scream. I want to say, "Wake up! This is going to kill me. There is no silver lining to this. It's not cute. Every bit of this is ugly. Every bit of this is ugly." But I don't say it, and instead, I make small talk about how lucky I am to have a nicely-shaped head.
And I hope it won't be too hard for them when it turns out that looking good can't cure your cancer.

Where Am I

Out having fun.
Over the last month we have been 4-wheeling
at the sand dunes, hiking in Zions
and skiing at Brain Head.
Yep, I went skiing!
It has been 8 years and it was awesome.

Most days I feel pretty good.
Bruises are all gone.
Still a little sore.
A few side effects from the meds,
but they are manageable.

I will try to remember to update this blog once in a while,
but if you wanna know what we are up to - go to the family blog.

http://ryanloveskimrosenberg.blogspot.com

Laugh, even when you feel too sick or too worn out or tired.
Smile, even when you're trying not to cry and the tears are blurring your vision.
Sing, even when people stare at you and tell you your voice is crappy.
Trust, even when your heart begs you not to.
Twirl, even when your mind makes no sense of what you see.
Frolick, even when you are made fun of.
Kiss, even when others are watching.
Sleep, even when you're afraid of what the dreams might bring.
Run, even when it feels like you can't run any more.
And, always, remember, even when the memories pinch your heart,
the pain of all your experience is what makes you the person you are now.
And without your experience---you are an empty page, a blank notebook, a missing lyric.
What makes you brave is your willingness to live through your terrible life and
hold your head up high the next day. So don't live life in fear.
Because you are stronger now, after all the crap that has happened,
than you ever were back before it started.
― Alysha Speer