Monday, May 30, 2011


(This post was written 5/9/11)

Down the hallway and to the right of the general Radiation Medicine waiting room is the treatment waiting room: an eight-chaired meeting place of survivors. of people who know all too well the difference between rights and privileges.

This room holds a few regulars mixed in with some new faces, depending on schedules and how the machines are running that day.

With a sentiment somewhere between detention and prison lies the initial "what are you in for?" conversation and everyone is happy to share their story. There's no need to explain how difficult it was and continues to be; we all understand without words. No matter what stage or grade or location or level of aggression, we're all there for the same reason: long-term survival. We all go on machines that administer beams that kill fast-growing cells. Cells that need to be killed so they don't become cancerous. Some of us receive lower doses of radiation. Most of us have interesting hairdos.

When someone finishes radiation, a well-intended outsider might say, "congratulations! You're all done!" or, even WORSE, say, "think of it THIS way..." No. Not us. Those who sat together through 6 1/2 weeks of treatments will not offer cliches. We certainly won't downplay a serious situation that requires serious treatments.

(Side note: for outsiders who think "benign" means "okay" you are wrong. Even if it's not life-threatening, every tumor is serious-even more so with brain tumors.)

When we (the insiders) look at each other and say, "congratulations" for finishing a round of radiation we mean "I understand what you've gone through. You have a positive spirit, but your journey is far from over. Your smile does not deceive me; you look good on the outside, but I know that you are screaming inside. I'm happy you don't have to drive to the hospital every day, but this road is going to be very difficult and very, very frightening."

Everyone's eyes are filled with hope and desperation.

No matter what the case, everyone is wondering the same thing: what is going to happen to me?

Sunday, May 29, 2011

an inconvenient root.

Before I write a post about some of the good things that have occurred this month, I'm going to "cover" a topic I've been avoiding: hair.

Last year a number of people told me that they would "just cry" if their head was shaved. Ummm I cried when I got my diagnosis. Twice. And I didn't cry when my head was shaved. Either time.

I would rather lose my hair than my life.

I was trying not to make a big deal about something so insignificant (comparatively) but... here I am. writing about hair. Last year my hair just did its thing and grew back all at once. Last year I didn't undergo radiation.

The radiation zapped most of the follicles on the right side of my head (where the beams were primarily directed since that's where the tumor was), a chunk in the back and some random hairs. There are usually a few on my pillow when I wake up. These will not START to grow back for a few months. Yeah, I said MONTHS. There's quite a bit left that will likely not fall out-including all of the top, which is growing back quite nicely (or so they tell me).

The only places I have been so far are doctors' offices and RPCI where, at any given time, there are at least 3 people walking around without any hair. It's easier there; I don't have to hide.

Let's forget about the beauty aspect of it for a second to discuss the main challenge: covering my head. I will not be able to just pull my hair back and run out of the house (not that there would be enough hair to do that anyway or that I'm medically cleared to

I will need to get a WHOLE BUNCH of headwear. The biggest problem is finding some options that are professional for work that don't cover my ears (when September rolls around I need to be able to hear my first graders!) or give me a headache or make me look like one of the Olsen twins.

Option number 1: the turban. Just because it has loops on it to hold a scarf that doesn't mean it will make me look any less ridiculous. This is not speculation; this was confirmed a few weeks ago. when I ordered a turban with loops on it.

Option number 2: hats. I am a "hat person" (why do people feel the need to pigeonhole themselves in this way and say they are or are not a "hat person"?) so I thought I could use these since I have a few cute ones. The problem? Most of them cover at least one ear or cast a shadow and that drives me crazy/really distracts me. Many of them also don't cover the patch that's gone in the back and give me a headache. However, I will still keep this option open. I'm not sure if I'd be allowed to wear one anyway.

I'll go with door number 3 and have to buy scarves-a WHOLE BUNCH of scarves. I have one so far and one on the way (for those just tuning in, I'm not talking about children) but I will need to get many, many more.

I will need to plan out what clothes I have and figure out what kinds of scarves I'll need and make sure I have enough to get me through many weeks at the very least. The cost is the least annoying part of it.

We'll come back to the beauty aspect and forget for a moment how unbelievably inconvenient it will be to get head coverings for each day. It's going to be a long, long time before I'll be able to style my hair. After a whole YEAR most parts were barely to my ear. Now I don't know when or how it will grow back. I was hoping that the parts that are there will grow enough to cover the parts that fell out-but, besides the chunk missing in the back, I doubt that will not be the case.

Am I sad when I see old pictures of myself? Absolutely. but not only because of the hair.
Designed by Lena