Saturday, June 16, 2012

It all started with a book, and a haircut.

I'm reading a pretty amazing book right now: Five Lessons I didn't learn from breast cancer (and One Big One I did) by Shelley Lewis. The basic premise is that not everyone has a huge spiritual epiphany from breast cancer. Not everyone suddenly wants to sport all things pink and in fact, some of us get downright pissed. For many of us, cancer affirms who we already are, and enables us to draw on inner strength and skills we've spent a lifetime learning. Shelley is snarky and brutally honest, two traits I admire (and possess)! While our specific cancer and treatment was different, our inner thoughts are eerily similar. Her words helped me solidify a lot of things I've been thinking but just couldn't manage to convey, even to myself: yes, I had cancer. Yes, it changed some things about me (more on that in a minute), but what it really did was solidified who I already was. I am not - and do not need to become - fundamentally different. I like who I am!

I've heard it said that when confronted with a life crisis, many people who self-identify as agnostic or atheist will turn to religion. As a self-professed agnostic (often bordering on atheist), I had no idea whether that would be true for me. But not long ago I realized that not once through this entire crisis had I fallen to my knees or turned to a "higher power." I believe that I have softened, become kinder, more understanding about some things (and much more annoyed about others), but I have not suddenly found religion, nor do I think that's likely to change. What I did discover is that I have an immense well of inner strength that I never dreamed possible. I joke that if "what doesn't kill you makes you stronger" then I must be Hercules, but now I know that for me it's the truth.

That said, I have also discovered that when the constant stream of doctor's appointments, surgery, treatments etc. wind down, the brain kicks into high gear. From Shelley's book: "When you're in the middle of treatment, you've got a team of doctors working with you and you put your head down and do what has to be done. It's actually scarier when it's all over... " This is my truth as well as many women I've spoken to. Suddenly there's nobody doing for me, telling me what comes next, giving me instructions on how to handle whatever's going on. Now I'm on my own up here in my head, and that's a dangerous place for me to be alone, let me tell you. Since last September when I had my first abnormal mammogram, I've been waiting. Waiting for tests and more tests, results, surgery dates, pathology results, healing, more surgery, more healing. Even now, 4 months out from my mastectomy and a month out from revision, I'm still healing and waiting. I can't buy bras yet, I can't buy pants yet (my hips are still hypersensitive at the ends of my abdominal incision), and I'm still in pain. I can't go braless for any length of time or my chest aches. I still have a few stitches from revision. 

But today I realized that there are improvements. I'm not really sure what clicked in my brain, but whatever it is I welcome it, because I realize that with it comes a feeling I'm completely unfamiliar with on this journey: the beginning of acceptance. Shelley describes what she calls "controlled panic" like this: "I look calm on the outside, but I'm mentally stripping off all my clothes and running naked down the street screaming 'Help!'" What a perfect way to describe the state I've been in for almost 9 months. Having cancer, a woman in Shelley's book says, is "like having a news ticker that's always running across my brain, displaying the words 'you've got cancer.' I go about my life and try to act normal but really, I can't think about anything else." Except for the first time since the beginning, I can. I can hang out with friends and talk about their goings-on, about knitting, about learning to spin my own yarn. I can joke, I can laugh, I can dye my son's hair bright blue and make up late-night jokes with him. And through it all I glimpse moments of grace, of realizing later that I've gone hours without thinking about cancer. 

So, the haircut. I'm a member of a group that's curly-hair obsessed. I used to be pretty damn obsessive about stuff like hair and nail polish, but then cancer got in my way and all that fell to the wayside. Recently someone asked what I'd done with my hair when I was in the hospital, and when answering her, I realized that not only had I not cared a lot about my hair since my mastectomy, I'd largely been wearing it up and I really didn't like it anymore. It never looked good no matter what I did to it. A month or so ago when my son wanted to bleach and dye his hair, I had a fit of adolescent pique and bleached my bangs (not that they qualify as bangs when they're past my chin) and started playing with all kinds of fun temporary colors. I realized it was a thing I could control, and I had a blast with it. But then when I was posting in my curly-hair group, I realized that I wanted to feel pretty again. I can't speed my body's healing, but I can do something about my hair, petty as it may seem. So I gave myself a haircut! Curly Girl by Lorraine Massey and Michele Bender includes a chapter on trimming one's own hair, and a DVD with a short demo. Using their technique, I lopped a bunch of hair off. I'd been trying to grow it out, but I'm thinking maybe I'm not destined for long hair, as it just never looked great.  (I'm not sure how long it is wet, but it's roughly chin-length dry now.) Last night, I got actual compliments on my hair, and not just on the purple/blue/teal gradient I have in my bangs, either! It was a great feeling, because I took control of something and just went for it. Is it a professional-grade cut? Hell no. But I like it, and that's what matters. Something about this hair thing, about taking control of something and liking my hair again has had pretty far-reaching effects that I couldn't have imagined. That acceptance thing. Some self-esteem, which is really hard to come by when you've had your torso basically rearranged. And yes, even some joy.

There's another thing that I've debated talking about, but I'm gonna give it a shot. 

I'm one of those people who needs to hear words. I need people to speak slowly and spell things out for me when it comes to feelings; I'm crap at reading gestures. I'm married to a man who speaks fluent gesture, however, and somehow I never get it. I'm always terrified that one day it'll all be too much for him: my crazy brain, my defective body. Now cancer and the loss of my breasts. My self-worth has been so shot that nothing he ever said or did got through to me, because I finally, finally get that it was never about him - it was always about me not believing I deserved this incredible relationship we have. Recently he left on the first business trip he's been on since my diagnosis, and I was a mess. I knew it would be good for him to have a break from my constant neediness, and that I had to start standing on my own and not relying on him for everything, but I wasn't sure I could. 

The other day he sent me a beautiful bouquet of flowers, and I broke down and sobbed. I called him and it took a minute for him to understand me, because I was completely unintelligible. Why that simple act of him sending flowers, of the little card in someone else's handwriting that said he missed me, broke through my addled brain in a way nothing else ever has, I can't say - but it did. I get it. Finally. 

See? Acceptance. 

Monday, June 4, 2012

Cancer's best-kept secret

I've recently discovered that cancer has many, many secrets. I'm not talking about the medical ones, the ones best left to researchers and doctors. I'm talking about the ones hidden from everyone - researchers, doctors, caregivers, and yes, patients and even survivors. The secrets that are rarely brought out in the open. The ones that are hidden behind the curtains, under the blankets, and even under our clothes.

I think I know why this is so. I think it's because only other cancer patients and survivors really, truly get it. To an extent, those with some chronic conditions or who have been through life-threatening illnesses do too, but cancer is its own beast. There are far too many preconceived notions about what it means to have cancer and what it means to be a survivor, and the media isn't necessarily helpful, because so many of us are portrayed as overwhelmingly positive, as WARRIORS (caps because that's how it always comes across to me), as somehow out of the ordinary.

The truth is, people who are diagnosed with cancer are ordinary folks like you and me who've had some crap luck. I've looked at people who portray themselves, or who are portrayed in the media, as “warriors,” “fighters,” etc. and who seem so positive, and now I know there’s more to it, because I've been told repeatedly that’s how I look from the outside. I honestly had no idea, because I’m here, in my head, living the truth. And the truth is, I don’t see myself as a warrior, or a fighter, or any of those things, and I’m far from upbeat and positive!

I've learned that when active treatment comes to an end, many people hit the wall of grief, and all the emotions that were suppressed due to the “busy-ness” of being a patient come roaring back. My husband told me the other night that the day of my mastectomy, he was floored at how I strode in (tiara and all) and owned that room. How I was just able to DO something so massive. But he’s realized now, as I am (not so) slowly falling to pieces, that what I was actually doing is not looking to either side or behind, but just putting one foot in front of the other, plowing through each step as I confronted it. It’s only now that I have time to take off the blinders, blink in the sunshine and think “holy hell, what have I been through?”

I am not happy with my body. My entire torso has been rearranged - while one day I'm sure I'll be pleased with the flat tummy and less-flabby hips (I had fat liposuctioned for a graft to my upper left chest), right now I'm still in pain, can't shop for pants that fit, and have to wear an extremely uncomfortable compression garment for four more days. And the foobs. Ah, the foobs. Someone told me that they were sad that I felt it necessary to call them that, but that's what they are. They are (mostly) breast skin, over abdominal fat/blood vessels. I no longer have nipples, but rather abdominal skin built to look like them. They are still the color of the rest of it, and the left one was just made, so I still have stitches there. I have no feeling, and I never will - this isn't like many surgeries where feeling comes back eventually; a mastectomy means the total loss of a major erogenous zone. Another secret - this is something you're told prior to surgery, but nothing can prepare anyone for this reality. Four months out from my surgery and I still can't assimilate it. Hell, I can barely assimilate that I had cancer in the first place! My husband tells me that I keep saying the words as though I've just discovered it, which in a way is true. Over and over I'm assaulted by this mass of flesh on my chest that doesn't feel like a part of me. (It doesn't help that I had a great rack before, either!) My goal is to reach acceptance one day. Even my therapist agrees that acceptance may be the best I can ask for - but it beats the hell out of the place I'm in now.

I told both my husband and son that I feel selfish. That I’m terrified everyone is going to get sick of me. I said that it’s my job to be the best wife, mother, friend, forum moderator, employee (insert other roles here) that I can be, and to be there and strong for everyone else. It’s what I DO. I don’t know another way to be - to tell the truth that I’m falling apart, that I’m scared to death of the magnitude of my own grief, that I felt as though I was heading toward a break with reality recently? That’s the stuff of my nightmares. Putting it out, making the choice not to hide it, takes just about everything I’ve got. My public face snaps into place without conscious thought on my part - I'm told that I'm one of the most "together" people some of my friends have ever met, and I don't know what to do with that information when it doesn't match what's going on in my head and heart.

My therapist gave me homework today:
  1. Stop analyzing everything to death. If I catch the cycle starting, yell “STOP” in my head, or even out loud if I need to. 
  2. Take naps. Naps are not “giving in” to depression, they are healing. 
  3. Make things. I have a head stuffed with creative ideas, but I haven’t managed the energy to translate them from ideas to THINGS.
  4. Journal, journal, journal. Which for me will be blogging, but that’s good too.
  5. Take a break from all things CANCER once in awhile, which includes not sitting in front of the computer so much.
Along those lines, I hope to blog more often, as part of the above homework. It helps to know others are reading, and to hear that my words make a difference out there.