The only smile big enough

My sister and her husband (Felicity White, Dan White) once gave me a Livestrong-brand shirt that says, “I now only have good days and great days.” And this day, was great.

You see, the thing we know for sure about my cancer is that its evil did escape that little shoulder tumor five years ago and travel to my lungs. We know this because of the nodules they found in November 2010 and removed. Those cells sat around undetected for five whole years of quarterly CT scans before finally manning up and becoming actual visible tumors so we could find them and cut them out. There is always the chance that other cells are similarly lurking.

So You have cancer, though horrifying, is no longer the least likely thing for me to hear at any given checkup. It’s happened twice, and it could happen again.

But not this day.

Today I got the all-clear. “No signs of recurrence or metastasis,” as they say. Nothing suspicious here. We’ll see you in four months. You don’t have cancer today. And that was so much enough.

I now only have good days and today.

But I’m kind of out of rhythm after a wind storm Sunday night. You can see from the picture, it was a doozy. We haven’t had electricity (or internet) since. I spent Monday helping the boys re-learn how to have fun without video games, driving around to peruse the damage, and checking email at a restaurant with free WiFi. Then we headed out of town to enjoy the air-conditioning and electrical wonders of Michael’s parents’ house. When we drove by a home that had its lights on with a family moving around inside, Michael said, “I’m so jealous of them.”

We should be back to normal late tonight. In the meantime I’m finding spotty moments to work and sort of relishing the surprising check-out from the daily same ol’. This picture is kind of what happened to our routine, only much less scary.

(Our house is the white one with green shutters you can see through the leaves of this poor, fallen tree.

Sledding on splinters in April. Sometime the ideas just flow, don’t they?

**

It happened to me the other day. I was watching a DVD special feature. I’ve gotten TONS of inspiration watching DVD special features. I adore them. They make me want to be in movies even more than I normally want to be in them.

It was for the movie The Switch in which Jennifer Aniston’s character – GASP – has a baby via a seed guy instead of a husband. You may have noticed a slight upheaval in the force around this time because Bill O’Reilly said it was irresponsible of her to promote a life choice like that and she said, What do I care what Bill O’Reilly says? Or something like that. And I say, did he watch the movie? Because if it was trying to promote a message that the non-traditional family is just as good as the traditional one, it did a really poor job. The movie practically screams, kids want a dad. But I’m getting off-topic, because none of that led to the ideas-just-flowing moment for me.

I was first inspired when the featurette told me that the movie was based on a short story from the New Yorker. Because, as you know, I get that magazine now. And I love it when dots connect like that, (i.e., the stuff I read could lead to anything, including future movies). But then the part I really liked. A guy was describing Jason Bateman’s character arc in the movie, and he said:

You might be in New York and be a totally narcissistic, material, career-oriented person; but given enough time and people who intrude in your life, if you open up to it, you have a chance of becoming a much better person than you were in the beginning.

And this was the inspiring thing, because I think people write fiction for different reasons, and this reminded me why I want to write it.

I used to not know what I wanted to write at all. I didn’t know what audience I wanted to write for. I didn’t know what I wanted to say to them or how I wanted to say it. But now, I do know those things.

Some people write fiction, I think, because their head is full of imaginative characters and mysteries and plot twists. My head, though, is full of things like this quote. Things like: Isn’t it cool that people can change? And, Unlikely friendships are the most beautiful ones. And, Sometimes we think our purpose is one thing and life shows us, it’s another. And fiction lets me wrap up those ideas in a million different packages – or several anyway – and tell them in story form, with many different characters and padded with many different settings and details.

This is the challenge: To tell the story without worrying whether the reader can state my idea back to me. Because if they can, I haven’t told a story – I’ve told a sermon.

When I got the attention of my literary agent I’d never tried this before, except in short stories – and only one or two of those. I was used to stating my ideas flat out, like a blog post or a memoir. So I’m still learning the story way. But that comment reminded me how thrilling that challenge is, how awesome it will be someday for someone to talk about a story I told and get from it the idea that I started with in the first place. But also, how amazing it will be if they get a wholly different idea as well, because the characters were just that real to them and the story that full of possibility.

Well, I DON’T ANYMORE.

I posted the news on Facebook last night, and the cheers have been pouring in ever since. So forgive me if the writing of this blog post is blurred by my happy, happy tears.

This is a picture of the boys in the waiting room yesterday. It goes out to all their teachers and former teachers, their aunt who was a reading specialist, Marilyn Goodwin, and anyone else who sees three BOYS reading and would join me in saying, “Michael, get your camera out NOW.” It’s also for God. Thanks for somehow protecting them from fear enough – or maybe for giving them enough courage over fear – that Harry Potter still rocks at a cancer clinic.

You’ve met Dr. Rosenthal, the sarcoma specialist I’ve followed with since my initial diagnosis. But my chemo specialist is Dr. Myron. My paragraphs in the memoir on Dr. Myron are less than – well – Rosenthalish. He barely said hello or goodbye and not much more than that in between. I remember a line that went something like, “We sat in silence for what seemed like hours as he read my chart and scraped his highlighter across the minute details of my life…” My description of that first visit was repeated almost to the LETTER the first time we met with him this go ’round too. As Mom is my witness.

But he became much more friendly after several visits, even complimenting my boots once. And yesterday, he was golden. He laughed and smiled. He remembered my brother’s name. I swear to you. (It’s because we like to tell it as a joke…”Felicity, Serenity, Charity….And Joe.” But still, I was impressed. Sometimes people remember the joke but fill in the blank with Frank or Fred or anything to sorta fit the bill.)

And of course there was the whole Telling Me I’m Cancer-Free Again Goodbye Sarcoma thing. That helped.

He told me one uncool thing about my odds (see title). Of course, I’m used to hearing uncool when it comes to my cancer. But apparently about half of the synovial cell sarcoma patients who recur at some point with a nodule or two in their lungs, as I did, will recur again. Which means that half of them DON’T.  Which in my mind puts me square in the who-the-heck-knows category which is right where we all are really when it comes to the good and bad of life. And that’s why I really, REALLY loved the last thing Dr. Myron said.

Enjoy every day.

In the words of Anne – kindred spirits aren’t nearly so scarce as I used to think.

The thing is, it won’t be back. It almost definitely won’t. They cut it out with surgery, they blasted it with chemo – something so potent it killed my eyebrows, for goodness sake. And, dudes, I had eyebrows. So in all likelihood, Lord willing, for all intents and purposes, if there be one shred of luck left in life for me, should God smile… at about 2 p.m. this Tuesday, I’ll breathe a sigh of relief so loud you should hear it wherever you are. And I’ll throw back my shoulders and raise my head and walk forward, because I’ll know that for at least a few more months I’ll be living.

It will be like the moments just before this photo when I walked with other survivors in the first lap of the Relay for Life in our town. They played Rocky music while we marched, and people applauded. They applauded the whole time we walked, as long as they could see even one of us, they were clapping. And it was the most wonderful sound and the happiest support and the coolest reward to bookend one really lousy couple of months.

That’s the feeling I’ll think of when I get the You’re Okay. The feeling of fighter music, of never walking alone, and lots and lots of applause.

But I’m also posting it, because it’s the closest picture I have to how I feel right now, which is totally and completely broken. Chemo broke me. It broke all the good things inside that keep you from feeling like crap all the time. It broke my spirit and energy and ambition. It broke my belief that cancer is just a chapter for me, and that no matter how long I get to live I’ll do it well. It broke my appetite. It broke me.

And that’s where I am right now, except that I once wrote this great essay about brokenness, so I know what brokenness means. It means the beginning. Brokenness is the place we are when we get saved. And I’m quite sure my salvation is coming.

I’ve already imagined how my life might be different once I’m awake again. I wonder what will matter most and how I’ll make that count. That seems something like hope, and I’m clinging to it.

I’m a little scared that I just went through something way more awful than it will ever be worth. But I’m not scared of how I feel and that I’m broken. Because being broken, and finding salvation, makes me grateful.

So far I see glimpses of my salvation in the gestures of friends. They’ve been posting them on my Facebook wall – visions of me a few months from now, healthy and doing what I love most; scripture; song lyrics; and quotes from my favorite books.

I’m clinging to these things. He’ll never leave me, nor forsake me. He is for me. He’s my salvation and my song. There’s a time to heal. And this beautiful passage from my favorite book – thank you again to Judy.

All the Beyond was hers with its possibilities lurking rosily in the oncoming years – each year a rose of promise to be woven into an immortal chaplet.

Anne of Green Gables

Dear God, get me to the roses. It’s so hard to see them now.

But one particular moment when I cried, I was on my bed, and I felt like I cried on a bed of princess pillows with a canopy overhead and a beautiful day just outside the castle tower. I felt like the only thing wrong in the world was how I was feeling, and everything else was you and my other friends, and my children and the books I’ve been given and journals and other gifts. All happiness, all around me. I knew it was there, just outside my pain.

And other times I glimpse life outside the torture chamber with the Albino, and I remember all kinds of good things about it, including my ambitions, and I feel happy then too. But it fades so quickly because I don’t feel like doing any of those good things or facing any of those ambitions. And then I cry because I know that I’m not scared of dying; I’m scared of living like this. Living with barely the energy to shower and none of the umph to write a novel and not enough strength to do good, hard work that eventually gets your plans made.

I watched PS I Love You again, and listened so closely to that part I love – the part about how we’re meant to create. And she said, “It doesn’t even matter if it’s a sock or a taco,” just so you put something in the world outside of yourself. Something that wouldn’t have been there without you. And suddenly I remembered that my children totally count for that. And then I became more conscious of what I said to them and how I said it – even what I looked like while I cried, hoping I’m still creating good things in them. Still finishing what I started on the glorious days when they were born.

Which reminds me to thank Charity. She came to visit me in the Chemo Pod again last week and she brought her beautiful husband (he’s a bona fide filmmaker, you know! With TWO entries in the Omaha film festival!) and her beautiful youngest baby and her beautiful memory. Because she remembered according to Michael’s genius plan that if we devote one week of chemo to each of one of my sons, it might help me endure. And so at supper, while everything else was a bit of a chemo fog, I remember our glasses clinking  – I remember Dad’s shaved head too, which perfectly matches mine – and I remember toasting to Drew.

So I’m thinking with those glimpses of goodness, and – you know, if Westley could eventually hold a sword again, then I probably needn’t be scared that I will forever live like this. I am, however, going to live. And I can’t wait to start that fun again.

P.S. Drew is on the right in this picture, and coincidentally, he leans extremely creative.

The girls in books lose their hair in fevers or sell it to get money for some good deed, and I’m sure I wouldn’t mind losing my hair in some such fashion half so much. But there is nothing comforting in having your hair cut off because you’ve dyed it a dreadful color, is there?” ~ Anne of Green Gables

Earlier this week, I took at their word one of the many people who’ve said, “Call if you need anything.”

Some people have had worse tasks than others in that context. My sister-in-law cleaned out my fridge – and other places – without being asked actually – right before we came home from the first round of chemo. That’s not a very pleasant task, because she wasn’t here to watch me discover all she’d done, to see my face with awe and gratitude on it.

My aunt made me chicken soup, which I ate on for almost one full week. It was the only thing that tasted good for a while. That task wasn’t too bad, probably, though sweeping my floors and straightening my kids’ rooms – which she also did – was probably less than enviable.

I think this friend had one of the harder ones. I called her out of the blue when I realized my hair was going. My usual stylist was home with a sick baby. So I called Lisa. She’d never cut my hair on a good day, and it was asking an awful lot for her to cut it on that day. I also accused her of planting another customer nearby who voluntarily assured me I looked pretty with hair that short. When I put on the hat above, she said I looked like I was going shopping in New York City. Then I knew Lisa had paid her, because what better compliment could you pay a girl like me?

So thanks to the people who’ve offered to help. Thanks to those who have – driving my kids around, watching my kids, bringing us food. But this post is a special thanks to the people who had the most difficult tasks. And so the biggest thanks goes to Michael, who did the final haircut this morning – though cut is a generous term – and who did it while I cried.

I’m not sad. I feel pretty brave about it actually. And I’m happy to discover I’m not nearly as vain as I thought I was. But sometimes, the tears just sorta fall on their own.

]]> http://www.serenitybohon.com/2011/01/i-never-liked-it-anyway.html/feed 25 http://www.serenitybohon.com/2011/01/better-justice-to-your-faith.html http://www.serenitybohon.com/2011/01/better-justice-to-your-faith.html#comments Wed, 05 Jan 2011 17:18:54 +0000 Serenity http://www.serenitybohon.com/?p=1855 So. Chemo week began with a 3am freak-out in which I couldn’t stop thinking this: I am about to go through something so intense it will make the hair fall OUT of my head. That is way intense.

We are three days in now and I am no less creeped out by the plethora of meds shooting into my body. What are they doing in there? Are they killing any bad things? Will I get the good stuf back?

Felic sent me a song once, “I know that (God) is for me. I know that You are for me. I know that you will never forsake me in my weakness.”

Well, here I am totally in weakness, totally freaked out by this process. And I’m very cold. I find myself unable to understand why people in lab coats keep showing me bags of medicine, why during the PICC line procedure they mererly asked me to lie down then started sterilizng me like they were prepping for an operation. Why can’t they hear me screaming inside? Where are the bed sheets to tie me down? How is Flight Risk not WRITTEN ACROSS MY FOREHEAD. (Alright Mom and Michael, who forgot the Sharpie?)

And you think I’m kidding but no. How am I still voluntarily enduring this- wheat thins every 2 hours and all-why haven’t I started the kicking and the screaming?

I think it’s because of Emma, Mr. Knightly, and you. Mr. Knightly kept believing in Emma ,hoping one day she would do his faith in her better justice than she did it now. I want to do justice to your faith in me.

I bought the hats. I even sang about them this morning. I don’t care if I go bald/At least I have new hats. It was eloquent.

So you keep believing and I’ll save the kicking and screaming until after it’s over and the kicking is the dance of joy. Deal?

I’m writing about how I didn’t even realize Zac and Vanessa broke up until Lori On the Road told me so on my blog. And I don’t know how that’s possible. And don’t even get me started on Ryan Reynolds and Scarlett Johansson. I didn’t even know they were together, and now they too have called it quits. I could tell you it’s because I was too focused on cancer, but I’m pretty sure it’s because I was still in mourning over Courtney Cox and David Arquette.

I’m also going to tell you about all the pictures of Katie Holmes and Michelle Williams I’ve been perusing today because my sisters were trying to help me enjoy the idea of a short hair cut. Last month I decided to follow some advice to cut my hair short in order to make the chemo effects less traumatic. My mom and sisters – I gotta say pretty gladly – jumped at the chance to offer moral support by cutting theirs as well and keeping it short until mine begins to grow out again when the process is over. I didn’t love any of the pictures I saw because I was pretty sure they didn’t come with celebrity faces, celebrity dollars, or celebrity ability to make every style look on purpose.

While Jaylena cut my hair, I told her she was doing a great job, and she said, “But you hate it?” And I cried, “But I hate it!” But I didn’t actually cry with tears and such. I was pretty brave and the only freak-out moment came when one side was short and the other still had some long pieces, and I wanted to scream at her to STOP THE CUTTING! But the absurdity of keeping those few long strands kept me sane, and I didn’t scream that, and I made it to the end without freaking out again.

The thing is, I wasn’t really nervous about cutting my hair. I was nervous about everything else, and the hair was just a sign of it all.

**Tangled spoilers ahead**

My boys and I saw Disney’s Rapunzel movie, Tangled, together with my parents when it came out. I adored it – I think I told you that – but I cried a little more than I might have normally because the hair parts were just so poignant. You know how her hair glows and is all magical and healing when it’s long? Like magic sunshine? Then it gets cut in the end – I won’t tell you how, in case you don’t want spoilers but just had to keep reading anyway. But then when it’s cut, the magic turns out to still be there.

When we got home I said something about the poignancy and my tears. I said something about wishing I could have her long hair or wishing I had hair that could heal me or just wishing I didn’t have to cut it – something like that, and we can’t quite remember what it was that I said. But Michael turned to me and tugged the end of my hair and said, “The sunshine was inside her.”

And that’s why he’s the best person I could possibly go through all this with. And that’s why I think finding true love and holding onto it for-absolutely-ever is the best gift God has given us and the best gift we can give each other. And that’s why celebrity breakups break my heart.