Wednesday, December 5, 2012

Two Rounds of Chemo, and I'm Healing my 12-year-old Self

Round #2 of A/C chemo complete! And... it went even smoother than last time! Who’d have thought? It’s just been another amazing few weeks since starting the chemo portion of this journey -- and, there is still so much every day to learn, it just blows my mind.

I have to tell you, from the bottom of my monkey mind, chemo was the thing I was simply, totally, blindly afraid of when I learned it’d be part of my treatment plan. For general reasons, but for one very specific reason, too. 

When I was twelve, my dad died of lung cancer -- environmental, not related in any way that we can tell through genetics to the can’t-sir I’ve acquired. He was 47, so just 8 years older than I am today. His journey was in some ways a blessedly swift albeit ironic one: in less than a year, just when he’d been declared officially in remission and was doing great after rounds of chemo and radiation and experimental treatments, he surprised us by suddenly just being gone the next day. 

Through the fog of time, I always remembered the chemo as one of the worst treatments he took on himself, absolutely devastating his big 6-foot-4-inch body and racking him for days at a time afterwards. Silently, I always blamed the chemo as instrumental in his death, though of course, I had no proof of anything at all, and certainly no medical degree. I was 12. I just needed something to grasp onto. 

I remember, I wrote a poem long ago about my dad’s sudden passing when I was in college, from the eyes of that 12-year old girl. A few of the lines were: “And the nurse called us to see where we’d been. To tell us he was dying. Hurry, she said, he’s been dying all day. And, I thought it was strange, because I didn’t know a body could do that.” My second to the last memory of my father is of the morphine drip turned up so very high, and the sorrow on his face as he turned to me really quite out of his mind, but in the way the dying can be, also so suddenly lucid, and whispered, “Help me,” before my mom-- thank goodness for my mom -- suggested I just go wait in the hall for a bit. But, eager, loving child that I was, still holding out hope, still wanting to do something, still needing to know something, my last memory is of watching from the hallway through the door of the room as his body seized up under the sheets. And, then he was gone, physically, from us. Though of course, he has never really been gone at all, not in the ways that matter most.

So you can imagine all kinds of reasons why, about three weeks ago, I shaved my head in anticipation of the much promised AC/T baldness. To be clear, it was not an act of defiance against death. It was an act of defiance at the kind of life I will not choose for myself to live, one where can’t-sir tells me how it’s going to be, even down to the simple things like hair follicles. It was one way I could get to some kind of rational place with the one thing that really threatened to overwhelm my sanity in this wild journey. And, it worked. Yesterday was the 14-day-versary of my chemo treatments, typically the day by which you’ve lost all your hair and you’re feeling sick as a dog. It has not been so for me. So far, I continue to grow hair at a fairly rapid rate, and there are only half eyebrows and a couple spots that are either a) actually thinner or b) nasty cowlicks that I never knew I had. (Ok, I do think it’s getting thinner, but whatever!) Either way, I’m still so incredibly glad we took out the clippers and just did it. While I have never yet felt disempowered on this can’t-sir journey, the act of exerting a little control over something I really could control -- my hair -- felt like a powerful declaration about who I am, and how I intend to be as I travel this road and all the roads that lie in wait for me beyond triple negative breast cancer. 

While some folks questioned my doing this, I didn’t have to question myself. I immediately felt that sense of control and authenticity as the hair came off in peels around my shoulders: this is me, or one part of me at least, and I look like a badass GI Jane can’t-sir warrior, so I’m all good with it. I drank my last glass of celebratory champagne as the locks fell, and voila! A new woman! Plus, it’s given me the chance to rock my fantastic collection of scarves, hats and wigs, which I just really, really love.

Monday, I was given a great gift out of all this monkey-led nonsense. I had a chance to share space with a woman early on in her own can’t-sir journey who expressed how afraid she has been of the possibility of losing her hair -- “I really like your headscarf! It gives me hope. I’ve been so worried, ‘What would I do if I lost my hair? How would I look?’” she told me, “But you look so good! How did you learn to do this?” Glowing from her enthusiasm, I replied simply and truthfully: “You would look fabulous. And, as for how to figure it out, you can just go on the internet and look up how to wrap a headscarf. There are a million tutorials!” (Then I showed her how mine was wrapped that day (a double crown), so she’d know it really wasn’t so hard at all.) 

For whatever this small exchange was worth to her, it was a huge gift to me. I think of Mother Teresa’s instructions to all of us who seek to serve: 

“Spread love everywhere you go. Let no one ever come to you without leaving happier.” 

It seems to me that it in doing this for others, we give ourselves the chance for immense happiness as well. How simple, how lovely a thing! How often I forget, and lose myself in surliness and general malaise!

It’s always interesting to be around other folks battling can’t-sir or serving on a can’t-sir posse, because it reminds me each time that we are all really having this intensely personal, unique experience with it. While, of course, there are some commonalities, particularly if I find myself with someone who’s in a similar soul journey phase, or who has a similar general outlook on life, I often notice the different ways we define and articulate ourselves on this journey. 

For example, I am always one of the 2 youngest in my “chemo pod” (those of us who go for treatment on the same schedule.) Every time I walk through the door, the room takes a collective breath, the heads slowly swivel, and then the murmur can be heard circulating around the chairs, “But, she’s so young!” It’s pretty much the same everywhere I go for labs, tests, surgeries, etc -- always the youngest one in the room, and the source of much discussion. 

At first I thought this might prove totally depressing, but now I’ve realized this is one of the most life-affirming statements I’ve ever heard! It’s even better than being carded for buying beer! So now, I embrace it, I express my gratitude silently: “Thank you for caring about me, for seeing me, for seeing me as more than a patient, but as a person!” I smile, and go about my business, and if someone wants to chat, I chat. Sometimes I cry with them. Mostly, we laugh. 

What a thing. What a thing it really all is just to be here, walking this earth in the place and way we have been given. I know sometimes it’s hard to see it for the beauty it contains, but it seems to me, there is an exquisiteness to each of our soul and life journeys, illuminated in the challenges we take on. I think of the quote about having the courage to begin a thing, and it sustains me. I think of The Prayer of Saint Francis, and it heals me. I think of the first stanza from "The Waterfall" by Mary Oliver: 

“For all they said/ I could not see the waterfall/ until I came and saw the water falling,/its lace legs and its womanly arms sheeting down...” 

And Mary's words remind me: look, just look. There is grace all around us, in every moment of every day. Even the worst of them. Just look. 

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