cancer

Peep Peep

Walking across campus last week, I noticed a duckling in a pond. She was doing that adorable dive under, pop up, shake off thing that ducks do, but is so much cuter when they’re still little and fluffy. I stopped on the path to watch for a minute and, I think I noticed at the same time that the duckling did that she was in that great big (for a duckling) pond alone. She stopped dunking and shaking and started to glide through the water, her bill springing open and closed as she let out a series of peep-peep noises. I felt an anxious tingle in my chest as I realized that the mother duck and the rest of the ducklings were in a separate pond, on the other side of the wide path. It wasn’t only the walkway between them, but stones blocking sight lines too. There was the gush of water noise and construction sounds from a new building going up nearby. As she floated around the pond, the peep-peep emitting more quickly and her head swiveling, I was certain there was no way so she’d be able to find her group. I wondered if there was anything I could do and knew I couldn’t just keep walking, so I waited. I stood in the middle of the path where I could see both the mother with her duckling pod, and the lost peep-peeper, and I waited. There was a large (for a duckling) distance between them and so many reasons why I didn’t think she’d be able to find her way, but then something seemed to shift. She was gliding to the edge of the water, then climbing out onto the grass, then screech-screeching at me as she ran tilting forward on her little webbed feet across the path, down the bank, and skipped into the water on the other side, sailing smoothly back to where she belonged. 

I’ve been thinking about this for days, how I was stunned into stillness by that little duck, seriously worried about what would happen to her. Walking down that same path today, I wondered about the metaphor.

Last Thursday marked the end of an eight-week class I participated in at the cancer center - “Mindfulness Based Cancer Recovery.” I’d thought to take the course earlier on, during my treatment, but knew I didn’t have the strength and wherewithal to commit to showing up and being present at regular intervals. Then, just when I thought the post-treatment depression would never end, when I was really getting desperate, this class’s cycle came around again and (with no small thanks to my awesome colleagues at work) I arranged to attend. 

On the first day, something like thirteen people gathered around a conference table hoping for the best. There were two facilitators and a bunch of people dealing with cancer - some survivors, some in active treatment, some caregivers. It was the first time I’d sat in a room full of people all so deeply affected by cancer; that alone was a balm. During the initial class I agreed to meditate for ten to fifteen minutes every day during the eight weeks of the program. Though I’ve practiced yoga off and on since my early twenties and read and listened to more books about meditation and mindfulness than I can probably remember, I’d never actually established a daily meditation practice. I was desperate though. My counselor called the mindfulness course an “experiment,” but to me it felt like some sort of last ditch effort. 

The size of the group dwindled as people dealt with what they needed to in life. We ended with a core of nine including the facilitators. Nine people who - as faithfully as we could - practiced the daily meditation and met up each week to sit around that conference table and listen to lessons about mindfulness, to talk about what was working for us and what made us cringe. We cried. We laughed. We did yoga in our chairs. We listened to guided meditations that took us to forests and mountains and on boats at sea. We swung sleepily in hammocks strung between trees on our own imagined islands. 

That hour and a half each week came to feel a little bit like magic to me, like a sparkling of light breaking across the water. Somewhere during the course of the eight weeks, something led my tripping feet up out of that lonely scared pond I’d started in, and over to the place where other folks were floating. I plopped myself amongst them and we all kept paddling. It’s not only that I made it to the others, but that I tuned into the homing device inside me that could guide my way out of the lonely pond and into the one with some life in it. 

The eight weeks are over now so I’m not going to see those people tomorrow. We’re not going to sit together and listen to those marvelous facilitators, and we’re not going to get to talk about things. But they are all still with me, my mind’s own little duckling pod. I think about them when I sit down every night to do my meditation, and when I go outside at work each day to count backwards from ten and breathe in the sun. And now that I’ve written my way through this, I’ll have them in mind every time I walk down that particular path or even when, someday in the future, I might happen to notice another duckling just peep-peeing her way along. 

xoxo
Sara

2015 June 4 - One Year Ago Today (Lotsa Update)

One year ago yesterday I was meeting my oncologist for the first time. Sarah had just flown in to go with me to the appointment. The doctor examined me and said, based on all the other info he had so far, he didn’t think it was cancer - 75-percent chance it’s not cancer, he said. Looks like we’ll be able to do this laparoscopically; you may be back at work within two weeks. (Someone asked me recently if he was saying this just to make me feel better.  Absolutely not - he really thought it was going to go a different way. Don’t be mad at him. In the end, it’s that doc and his team who have gotten me this far.)

One year ago today, Sarah and I went to the hospital. We sat in a waiting room, quietly. I got the IV. They nurse suited me up in a strange fitted blanket with a heater built in - something out of a 1950’s imagination of the future. The anesthesiologist walked through the door. Sarah held my hand and we joked about “the forgetting drug” as the doctor loosed it into my IV. When they started wheeling me out of the room and the lights moved above me, I asked, Is it better to keep my eyes open or closed? Closed, the anesthesiologist said. Definitely closed. 

I feel compelled to write what I now know happened in the O-R, and the moment I woke up, and then what came next and next and next until I’ve spilled out all the moments, but that isn’t for right now. What I can still barely think about are those phone calls that Sarah had to make, alone in the waiting area. The people I love on the other end of the line. (I wonder now what we’d been thinking - that it was going to be ok, I guess, that the calls would be good news, relief.)

This writing feels very somber and I feel very somber about the memory, about the truth of it all, but here is another truth: It was one year ago, and today I feel, physically, pretty close to fine. And at my last scan, everything looked fine. Sure, there is still a port in my chest, and we’re still waiting and watching, and the way I think about so many things is changed for good, and there is still so much uncertainty and loss and all of that. But things always change and there is always uncertainty and there is always loss. I’m back to doing just about anything I liked to do before, and feeling pretty good about it. In everyday life, people can look at me and not even know what happened. I’m somehow a year - a weird, surreal, horrific, beautiful, terrible year - later, mostly just regular folk again.

I thought about letting this anniversary pass without comment, but what I really want is to say thank you again. Thank you for coming to stay with me. Thank you for your time and your love and your travel and your cooking and shopping and phone calls and money and prayers and for holding my hand and thinking of me and sending me cards and flowers and letters and coming over just to talk to me and mailing me books and movies and clothes and hats and watching me quake and break down and come back to life. It’s a different life, but I hope to make it a good one. 

I seriously love you guys. Thank you. Thank you. Thank you.

2015 May 11 - T-Boz Roosts Here (Lotsa Update)

Dear ones,

I’ve been meaning to, needing to, write to you for a while - at least a week since my six month check-up with the oncologist - but just haven’t been able to. So, at least here is this: all is clear. Good scan and good bloodwork. Praise be. I’m still tripping my way over a very bumpy path. I still have awesome people to lend a hand. Here’re a few things I saw on my walk with Elgin tonight: a child-bird, still with some of its fluffy baby feathers, hopping and trying to fly; a tree with fresh, bright leaves that grow big and flat so when you stand under it and look up, you find  a sort of ceiling; a bamboo fence that whistles in the wind; a chicken roosting, uncaged, atop a brick fence with a hand-painted wooden sign that says, “T-Boz roosts here,” and; a whole bed of cactus that somehow survived the winter.

Love and light,
Sara

2015 March 17 - The Question of Self Pity (Lotsa Update)

Hey friends,

It's been a really long time since I've written to you. That also means that it's been a really long time since I've written. I just haven't been able to manage the energy and focus to sit down and really tell it like it is, or to (perhaps) figure out how to pretend it's better?

Some darling friends are visiting St. Louis for a few days and encouraged me to write something to all of you again - said they've been hungry to know how things are going - the good and the not-so-good. So here I am. It's something.

Here're the generalities: I've been working full time in the office since mid-January. That is going well, I think - some days I leave early, some days I come in late. (Lucky for me, I've been able to accrue sick time to cover this.) There are doctor appointments and bloodwork appointments and port up-keep appointments. But, I am carrying my weight again at work, and it's nice to know that my being back makes a difference to my coworker-friends. My three-month check-up in early February (just blood and physical, no CT scan) showed that things are looking fine - nothing new to worry about. I had more, regular blood drawn last Friday and am waiting (anxiously, as you might imagine) for those results. My next scheduled CT scan is May 1st.

Now to try to describe what life is like right now...This is an old metaphor, but bear with me; it's all I've got at the moment. I've never run a marathon (or run more than a mile - I'm a walker!), but I've come to imagine each day as that - a long stretch of step-after-step to get to the end where I try to rest up to do it all again the next day. Some days it's slow and steady, eyes on the road ahead, no room for distraction; I power through. Some days I glance around to see friends cheering along the fence-line and I can slap hands, get a hug, smile, pick up the pace. Some days, it feels like crawling along through a hailstorm. I always feel tired. I always wake up wondering if I can really get out of bed and do it again. (Well, there was one day - a Sunday about 6 weeks ago - when I woke up and felt OK! That's something, right?)

Two things I heard from doctors last week that are both encouraging (because I'm not outside the norm) and a bummer. First, that this time - 5-6 months post-treatment - is often very hard. People think you're feeling better by now and maybe you are, but it's marginal enough that it doesn't feel like much. You want people to be able to be glad you're okay - and you are "okay," huzzah! - but you still feel like only a slice of yourself. Second, that recovery from treatment generally takes at least twice as long as the actual length of the treatment. By that measure, I might be almost half-way through?

This brings me to another reason I haven't been writing. I'm stealing this from Joan Didion: The question of self-pity.
These are the first four lines of The Year of Magical Thinking:
"Life changes fast.
Life changes in the instant.
You sit down to dinner and life as you know it ends.
The question of self-pity."
I know, I really do know, that I am doing so much better than I could be. I know I'm lucky to have made it through the surgery and treatments and that things look ok now. I know I had so much amazing support. I know I'm lucky, and yet I cannot feel happy. The question of self-pity.

It occurred to me a couple of months ago that I never took a break in all these months. It was always go-go-go, what am I on the hook to do today? I was not working full time during treatment, sure, but that was not a break. I was always in treatment and recovering and trying to figure out how to work more, until working more led to the shaky transition out of treatment and back to work full time. It occurred to me that I never really stopped to breathe. On Friday, I leave for a week in California. I'll be staying for a couple of days in San Clemente with my Auntie Meg and cousin Angela, then riding the train up the coast to Santa Barbara, where I'll stay in an AirBnB set-up with a friend of a dear old college friend. (My brother, Jason, came riding along on his white horse again to get me airline tickets with his travel points.) My criteria for the trip: sun, ocean, nobody expecting anything from me. I hope this is good. I hope it helps. Send me your prayers and sweet thoughts as I try to do a little reset, get my feet on the ground.

Well, I started out thinking I was going to write you three or four sentences and look at this big, long missive. Thanks for reading and caring.

Love and more love,
Sara

2014 August 11 - It's a Metaphor (Lotsa Update)

Hello again,

If you didn't already know, recovering from a chemo treatment - speaking delicately - stinks. And this last week has been particularly rough. There is a place you can go where you just can't imagine that anything will ever be good again. Goodness or rightness or even okay-ness are unfathomable; I found myself in that place quite a lot this round - both physically and mentally. (Does this remind anyone else of the dementors from HP?) My Aunt Mia was here with me until Saturday and did her best to keep me steady, which sometimes meant just petting me and cooing while I cried. After she went home, it was my Aunt Meg hanging on the phone with me while I did the same. A bunch of "no good, very bad" days.

I question why I'm writing so much and so clearly about this here. In this venue, shouldn't I just get to the point, give a quick update, then get positive? I don't know... Should I? I feel as though, if I were in real eye-to-eye conversation with you, I'd tell you the truth, so why not here? This treatment has me holed up and broken, but as much as people like to label me "sweet" and "nice," it's in my soul to be real. Maybe I'm too raw still and will revise some of this away. Maybe not? I wonder what you'd prefer. How much is the right amount of sharing? (You don't have to answer that!)

Well, anyway, I felt like I was knocked further down by this last treatment even than the ones before, but may be starting to see the upswing coming. As evidence, I can tell you that I cried only a little today and asked Jen T to drop off some dinner (which, of course, she happily did!). I paid some bills and did some work online and reveled in a lovely email from a friend currently on a road trip (one of my very favorite spring-summer-fall pass times). The email described the scenery in a way a writer could love and even included a frosty mug of root beer at a roadside stand. It made me nostalgic and happy in equal measure. Happy in the same way I was happy to get a smiling selfie from my brother, Jason, and his wife, Susan, who are vacationing at the beach this week. It's just amazing to imagine that life - road tripping, summer-vacationing, kids-dripping-ice-cream-cones life - is going on in a circle somewhere close to this one I'm trapped in for now. The nostalgia is for my own past selfies and road trips as much as for future ones that seem, right now, so hard to envision.

After all of this maybe-I-should-edit-it rambling, what do I really have to say to you today? Enjoy yourselves if you can, folks. I need to know good stuff is happening out there.

My, that might all be too maudlin, so I'll end with this...

I woke this morning to a text from my big brother. It came in at 5:37AM and began with an iPhone photo of the sun coming up over the ocean. It said, "Sara... The sun is rising. :-)." When I woke up several hours later and gave a simple reply, Jason continued, "Do you get it? It's a metaphor. :-p" I love that guy.

And you too. Thanks for being here and for being you.

Xo,

Sara

PS. On a totally logistical note, I am looking for a temporary foster home for my dog, Elgin. It would be best for me to find a good spot for her to stay until I'm through with these treatments (mid-October). I think she would do best in a one-dog household with no small children. (She has had doggie-friends before, but they are hard to come by; she is used to living with a feisty cat.) Elgin is currently in Tulsa and could be fostered either there or in St. Louis (or in between, I suppose?). Drop me an email if you would like to discuss in more detail.

2014 July 26 - Stunned & Grateful (Lotsa Update)

Hi again,

Well, the past week has been up and down. Recovery from the July 15th chemo reached further into this week than I'd hoped, but by Wednesday, I was starting to level out and Thursday night I was thinking like myself again -- wanting to visit my cat, missing my dog, and laughing a lot with Kristi, who was here again from SF to help out (there may have been some bald-girl Sinead O'Connor lip-synching...). All in all, I'm having some good moments here and there, and hoping the 10 days or so before my next treatment will have some more.

You probably know that my brother, Jason, launched a fundraising site* for me last weekend. Lots of you have helped spread the word through Facebook and email (one friend I know of even blogged about it) and I'm just boggled by the response so far -- stunned and grateful and humbled. I don't know what to say except that I'm gonna pull up another bucket of gratitude and pass it your way. You guys are just... more than amazing.

I haven't been reading much lately, but I did come across this little sweetness yesterday in Sara Zarr's YA novel, The Lucy Variations: "...because even if your own life wasn't perfect, there was this WORLD. And you were LIVING in it, somehow."

More soon.

Xo,

Sara