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Commonplace Magic

Through the fog of a regular morning, all at once, I was standing in a parking lot in the sunshine feeling grateful for:

  • A job where I have the flexibility to show up, loosely, sometime between 8:30 and 9.
  • Wearing jeans and flip-flops to work.
  • Having long hair hanging wet against my neck and shoulders.
  • A commute that allows for morning coffee-and-a-book time at least four days a week.
  • Listening to a book that feels so real and has moments of connection so bright I get chills.
    (Love Warrior)
  • Hearing Wilder awake before I leave for work (even if she's screaming and likely making her parents nuts).
  • Real love and connection with so brilliantly-lucky-many amazing, wonderful friends (even if many of them live far away).

No matter what else, the Universe brims with goodness.

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 November 30 - My Billowing Cape (Lotsa Update)

Hi there,

It's been a couple of weeks since I last wrote to you all, but I think about it a lot; there are so many things my little self is trying to sift through and process - what's happening, what's worth sharing, how to make enough sense of it to actually send something worthwhile. So many confusing, upsetting (and sometimes beautiful and eye-opening) things are unfolding out in the world in this moment. Like all of you, I'm doing my best to pay close attention.

I've been back at work in the office part time for two weeks now, though last week was a short one. I was pretty nervous about going back, not really about my ability to move into the role I play at work - I'd been doing the job at home for months - but about my ability to take care of my physical self, my changed physical self, out in the world on an everyday basis. What if I was too tired to make it through? What if I got overwhelmed? And maybe the largest concern, though I didn't see it then, what if I just fell back into my self as I was - I must always be my best! - without allowing the space and time and energy to do the most important things: let my body get strong again and begin to process what has happened and how I will be in my life, in my world, now?

I fought serious fatigue that first week. By the time I left each day, I'd had all I could take and would go home and just sit quietly, or if I had company or talked on the phone, I was really not pleasant. I just felt so irritable and exhausted. The second week, the short Thanksgiving week, was a little better. I still felt beat by the end of each day, but maybe not tired to the point of feeling angry about it. We'll see how this next week goes, if maybe soon my doctor and I will decide I can do more. There is one piece of advice I've gotten over and over from my doc, as well as from various people in various contexts: don't go back too soon; make sure you take the time your body needs. I'm trying to hold onto that advice and be very, very careful.

That addresses logistics. Otherwise, I'm just swimming through this slithery pool of memories and experiences, trying to fish out some meaning. The biggest thing I can get my hands around right now is the constancy of feeling my mortality. Of course, I've thought about this since the diagnosis. It was an invisible band fixed tight around my chest, daring me to take another breath; I couldn't look down at it. Now, it's more like a slippery black cape, the fabric trailing behind me so I can sense it fluttering at the back of my neck, feel it brush against my heels. It's not an idea anymore, but something stitched to me like Peter Pan's shadow. One night a couple of weeks ago, maybe just after I sent the last update, I climbed into bed and had this acute, visceral sense of... how to describe it... my Self gone from this place, the part of me that would be gone. It took my breath away. I have an acute awareness that I've gotten a reprieve, at least for this moment, and also that this is not a thing to be taken lightly or for granted. That knowledge holds a vast weight.

Last weekend, I went to my favorite brunch spot and ran into a server who had moved away for about a year and is now back. We'd been friendly before and when she saw me, she gave me a hug. We went to my regular table and she plopped down the menu and said, "So, girl, what's been going on?" I stuttered and stalled for a few seconds - we hadn't been close before she left, just interested parties, acquaintances-plus - until I finally said, "We'll, I've had cancer." How do you small-talk around that? I couldn't think of a way to be real and honest without telling the real, honest truth. She cried. It wasn't dramatic and she didn't launch into a personal story that connected to her response. She just stood there looking nervous, asking questions, and wiping away tears.

This was only the second time since my diagnosis that I've felt in the position to need to reassure someone else of my okayness. You who have been reading these missives know that I decided early on not to pretend, not to be okay just to keep people comfortable. The first time post-diagnosis that I felt called upon to be okay for someone else, it was so early on and I was still so stunned, I just apologized and said that I couldn't make any promises. I knew what that person needed to hear me say, but I couldn't say it. This time, it was different. It [could see that this was more] about *her* fear than *my* reality. Does that make sense? Don't misread what I mean - I'm sure she's a deeply caring, empathetic person and she felt for me, but, I think what was really happening was that, for a second, she could see my cape billowing around me and it made her afraid that she'd have to feel her own cape too. By reassuring her that I'm doing pretty well now - "Look! I'm strong enough to come out for brunch again!" - I think I was really just desperately trying to put my metaphorical arms around her and whisper, "Yes, we both have our capes on, but, sweetheart, thank God, we don't have to look at yours yet."

I saw my long-time therapist a few weeks ago and we talked about this... it's not quite sadness, but stunned-ness that I'm carrying after the end of my round of treatment. She suggested that I am now grieving "the loss of a life without cancer in it." I may never (please, Heavens, let this be) have cancer again, but I will now always have a life with cancer in it. I can see the truth of this differentiation in the many people who have felt so keenly for me and reached out in such specific and knowing and loving ways because they too, though now healthy, have a life with cancer in it. I've been ruminating on that idea of grief and it feels very accurate - that sensation you have after the thing-that-changes-everything, a death, a divorce, a serious illness. It's foggy what life was before; you can't quite remember. It's foggy what life will be; you can quite imagine. In the middle, in the now, it's just stunning and upsetting and unfair that you have to think about either. (This brings to mind current events too, right? We are in the stunned middle.)

Over the last couple of days I've been reading Anne Lamott's essay collection Traveling Mercies. In "Ladders," she writes about grieving after the death of her lifelong best friend (it is not lost on me how everywhere I look there is cancer, there are people gone too soon). "But what I've discovered," she writes, "...is that the lifelong fear of grief keeps us in a barren, isolated place and that only grieving can heal grief." And later, "A fixation [on something else] can keep you nicely defined and give you the illusion that your life has not fallen apart. But since your life indeed may have fallen apart, the illusion won't hold up forever, and if you are lucky and brave, you will be willing to bear disillusion. You begin to cry and writhe and yell and then to keep on crying; and then, finally, grief ends up giving you the two best things: softness and illumination."

I guess this is what it all adds up to for me right now - all of these walks I need to take, and the staring at the wall/ceiling/sky I need to do, all of this truth-telling and honesty you all have been willing to bear - it's in service of this idea: that I can't hide from what's happened, that the only way out is through, that in the end there is, maybe not sense in the senselessness, maybe not order in the chaos, but at least that sweet softness, that blessed illumination that Anne Lamott talks about. That's what I'm hoping for, at least. Thanks for riding along and listening; I don't know how I'd have made it to where I am without you.

Prayers for peace and love and understanding to you and far, far beyond.

Xo,

Sara

Ps. Eyelashes are here! Eyebrows are coming! Peach fuzz up top. :)

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

2014 July 15 - Chemo #2, All the Flowers (Lotsa Update)

Hi again,

Just a quick follow-up to let you know that today's chemo treatment went smoothly. I was there, with my cousin Alexis (Portland, OR) from 9am to 4pm, then came home and napped for a while. Imagining that the next few days will be on the crummy side for me, but I think I have a better handle on how to use the medications to make things more manageable.

This is the epiphany I had today, guys: with your help, I just might be able to do this. I'm struggling to find a way to say something more than thank you, so I'll share this quote I read recently:

"You can cut off all the flowers, but you cannot keep spring from coming. " - Pablo Neruda.

I'll be in touch again soon.

Love,

Sara

PS- Someone sent me the DVD of To Kill A Mockingbird and somebody else sent me Mark Nepo's Book of Awakening, but I don't know who? First, thanks! Second, drop me a note to let me know it was you!