Moments

Where I Live Now

Dearest of dear ones,

At long last, the promised update! Cutting right to the chase… I now live in Portland!

Some of you may be thinking, “Yeah, I know. You’ve been talking about this for years.” I talked a big game, folks, but I was never actually sure it would happen.

It’s been a little more than a week since Portland-Sara morphed from an idea into a reality, so thinking about it still gives me a swoop in the stomach and a tingle in the neck. This is not bad or good; it’s change. It’s a decision made. 

This year has been heavy with decisions, heavy with change. 

Heavy with miles traveled (over 7,000), with months lacking a proper job (6), with states traversed (17), with moments of heart-stopping uncertainty (lots), and of pure, glistening joy (countless). 

The first half of the year was so heavy I didn’t know how I’d bear it. There were times (days, weeks, months) when crying seemed my main occupation, when I could not fathom moving through the next day.  

The second half of the year found me the lightest I’ve ever been. The most grateful. The most awestruck. The most surrendered.

2017: a year of metaphorical and literal journey.  

Mid-December 2016, I was sobbing in my bedroom, yelling at God, “Why won’t you help me?!” This was a low point. Following my cancer treatment, I had rediscovered Spirit, embraced Presence, found a church I loved. (The Gathering in St. Louis, I don’t have enough words to express…) I was nourished. Then, with all of those things very much in my grasp, anxiety and darkness ate up the light. A dark night of the soul is what they call it. I managed to maintain a somewhat normal exterior, but the darkness was so deep, you guys, so why-am-I-on-this-earth-anymore deep. But that’s a story for another time. 

Back to how I ended up in Portland.

In November 2016, two years post-treatment, when I’d expected to have a clear CT scan, be named officially cancer-free and ready to move on with whatever would come next, instead the scan was ambiguous. Some tiny thing that hadn’t been evident before had appeared; and there was the lingering bronchitis, the recurring pain in my ribs. Just before Thanksgiving, following a surreally crazy test involving a nearly empty room in the deepest basement of the cancer center — Nuclear Medicine — and a kind, careful nurse injecting a radioactive substance from a small metal vial into a vein in the delicate gooseflesh of my inner elbow, the potentiality that my cancer had spread to bone was dispensed with. But still, there would be three months more waiting to see if the new spot on the scan was Something, or just a glitch. (To save you the stress I endured, it was apparently a glitch. Huzzah!) But, there I was just a tad over a year ago, yelling at the Universe for help.

Two days after that December night of forsaken-feeling anger, I was given 30 days to move out of my apartment, where I’d lived for nearly six years. 

Less than two hours after that, in a casual conversation, an angel of a friend offered me a place to stay for a couple of months, just to get me through my next scan. I ended up living there for six months — a safe, quiet place with dogs to love, and calm, solid support close at hand. The friend wouldn’t let me pay rent.

I guess Providence had heard my shouts.

That friend’s generosity allowed me to save money for a move to Portland where my biggest family cluster lives. But I was never sure the move was right. I was frozen. I was crying. I was saving up. For something.

Another tearful, prayerful night, it became clear that I needed three things: quiet, family, time. Now, to make these things happen…

In February, I got the all-clear from my doctor. “Sara, it’s time to go live your life now.”

In April, I hit a new low and, with a lot of help, got a handle on my depression. 

In May, I gave notice on the most lucrative job I’ve ever had, working for a boss and with a team I respected immensely.

In July, I worked my last day at UMSL, repacked my 10 x 10 storage unit, filled my car with what I thought I’d need for up to six months (the ridiculous-long estimate; I expected to be on the road only through October at the very latest), said goodbye to my St. Louis beloveds, and started driving.

I promised many of you updates along the way and I did manage to post some pictures and captions, but the longer I waited to write to you, the more experiences built up, and the harder it seemed to tell all the stories. So, finally here are some details. I hope once I get caught up, I’ll be better at staying in touch!

July/August — Nearly six weeks in Arlington, VA with my brother, Jason, sister-in-law, Susan, and brand new nephew, James. So many beautiful, home-cooked meals; being part of a family, baby-duty (wonderful baby-duty!) and all; regular writing dates with my brother (who happens also to be working on a book manuscript); getting to know my sister-in-law, becoming true friends; a magical week on the beach in North Carolina’s Outer Banks, swimming in the ocean; so much reading. I never wanted to leave.

August — Back to St. Louis for quarterly medical tests (all clear); reconnecting with people I love love love; catching up on last to-do’s before heading west.

September — Chicago for several days with my dear, old friend Sarah (and her Brian and family) in her new city. Biking on the lake, museums, food, long walks and lingering conversation — some of my very favorite things. Ann Arbor to visit Ellie and Dave, two of the kindest people I know; welcome like welcome was born to be. Detroit to mourn my darling Auntie Cathy with my uncle and grandmother. Back to Chicago with Sarah and clan for one restorative night and morning before pressing on.

September/October/ November— Denver/Boulder. The sunlight! So much connection with family. Long conversations and walks with my Auntie Mia, getting to know the daily life of my cousins. Stepping into a family unit ready for me to join right in. Cooking, relaxing, reading; long trips to libraries and bookstores; mornings spent reading, afternoons spent walking; seeing my grandmother almost every day, joining her for seven Fridays of her ladies’ prayer group. When I arrived in Denver, I thought I’d stay a week or two; I finally packed up and left after eight. Good God, this time was a gift. A pearl of hope, clarity, and intention growing layer by layer by layer.

October also saw a quick side trip from Denver to Tulsa to reconnect with home. With my beloved high school best friend, Tara, I saw Ryan Adams at the Cain’s Ballroom; reconnected with Wendy and Johnny, Nate, Shane, my brother Adam and his wife, Gina; sat quietly at my mom’s grave; and then visited Lynette, a librarian I worked with for one year, nearly twenty years ago and whose voice stayed with me longer than she’d ever imagined.

November/December — I planned to go through California after Colorado — LA, San Clemente, Oakland, San Francisco — but was called to Portland early to help out with a family injury. Not the injury, but the call to Portland was right on time. I was ready to settle for a while — a while meaning through New Year’s. By this point, I wasn’t sure Portland was for me. I thought I’d go back to Arlington/D.C. to live with my brother and his charmed little family or, more likely, to Denver, land of the shining-est sun where my spirit glowed so bright. But then, following a hike during a long-anticipated side trip to Vashon Island in the Puget Sound to visit one of my dearest college friends, Leila, and her partner, Ellen… click, click, click, like the perfect tumbling of a clock’s gears, the Pacific Northwest grabbed me, a Portland job fell into place, and I decided it’s time to stop, to stay.

So, on January 2nd, I start my new job — 30 hours per week, leaving ample time to pursue my writing, and with medical benefits — as assistant to the Columbia District superintendent for the Oregon-Idaho Conference of the United Methodist Church, a progressive religious community that is, I believe, on the cusp of exciting change. (Yvi, you might not remember, but you’re the one who suggested to me, so many months ago, over lunch, a Conference job!) I’ll be renting a lovely room in my cousin Alexis’s family’s home — nestled among stunning pines and holly bushes bigger than you’ve ever seen — and joining the Alexis-Nathan-Finnegan-Wilder household as full-time Auntie Sara. 

Who ever could’ve imagined, on that cold, miserable moving day last January… 

—

On my travels, in a little indie bookstore in Ann Arbor, I found two beautiful art prints made, I didn’t know at the time, by a painter in Portland, OR. This is what they say:

“Everything changes. Nothing is Lost.”

and

“It is well with my soul.”

Yes. And amen.

Sending so much love and peace and gratitude. I promise to be in touch again soon.

Xoxox,
Sara

2014 November 5 - The Water is Calm (Lotsa Update)

Hello again,

I thought I'd share a little more about how things are going, since my last update was just a quick note to get the word out about my clear scan and bloodwork.

When I got the news last Friday, I had just left a counseling appointment at the cancer center, and pulled up at a parking meter to run a quick errand in the Central West End. My phone rang and I saw that it was my oncologist's main nurse line. This was it. I answered; the reply came, slow and deliberate.

"Sara, this is Deb."

"Hi, Deb."

"Are you ready for this?"

"I don't know if I'm ready for this," my voice was a kind of whine.

"You are," Deb said, and I could hear her smiling. "It says, 'Tell her the scan is perfect and the CA-125 is within normal range too' exclamation mark, exclamation mark!"

This is where my exact memory of the conversation fails. I know Deb said that we still need to be vigilant but this was good news, and that she saw the results and knew she couldn't make me wait through the weekend to hear. She said something about it being a great Halloween treat and that I should go and have a wonderful weekend.

I sat at the meter for a good twenty minutes, making phone calls and sending texts before I got back into somewhat-normal mode and finished my errand. I was very close to Bissinger's (chocolate shop) and decided I deserved a decaf mocha. (I guess some people celebrate with champagne; chocolate and whipped cream for me.) As the super-nice guy was making my drink, he started chatting, asked me how Halloween was treating me. I smiled dazedly and said, "This is a really good day." When he looked up, I blurted, "I've been having chemo for the last five months and I just found out my scan is clear, like half an hour ago." He said how great that was and congratulations, and murmured something I couldn't quite hear to a coworker. When he handed me my drink, he said, "Thanks for sticking around a while!" (He didn't mean in the store.) I'm not the type to hug a stranger, but it almost happened. Then he asked me to wait a minute and the coworker he'd spoken to earlier passed me a pound of assorted chocolates. As I walked out, I heard the barista say to his friends, "She just got through chemo and..."

Between the mocha and the news, I felt giddy for a little while. I came home and paced my kitchen, rubbing a hand back and forth over my mostly hairless head. God, how much I wanted to call my mom. I wanted to tell her so bad - the scan is clear, mom! She's been gone almost six years now, but it doesn't seem to matter much; when something big happens, she is still the person to tell. The only other thing I could think to do was get down on my knees and say thank you. That's what I was doing, just kneeling on the floor saying thank you over and over, when my Auntie Meg (one of my mom's two beloved sisters) called and, though I'd talked to her while I was at that parking meter, I paced the kitchen and gave her the blow-by-blow again. And then again.

I'd already made plans to have dinner at the home of some friends who live in the neighborhood. It was a lovely time and delicious home-cooked food and when I got home later, I was exhausted. Back on the phone with my Aunt that night, I made my way to stunned, then rapidly, to overwhelmed and sobbing. She stayed on the phone with me - as she has done many nights since all of this started - until I was ready to fall asleep.

You know the feeling you get during finals week, where you know you just have to get through and *then* you can crash? The adrenaline and the need to perform, to do what needs to be done, pushes you through. This was a major crash. It really did feel like there had been something pushing me to keep going and going through the treatments and the anxiety and all of it. My cousin Alexis explained it like this: there's been a bear chasing me for months; now that I can stop running, it makes sense I would crash hard. Saturday and Sunday, I could barely get out of bed and when I did, I thought maybe I shouldn't have. Monday, I worked my regular hours at home, but that is all I did.

First thing Tuesday morning, Shawnessey met me for my doctor appointment. We heard again that the tests were clear. The doctor talked about the toll the chemo has taken on my body, how I can expect to continue to feel quite fatigued for a while, explained that the shortness of breath I've been having is from chemo-induced anemia. He went on to say that this is when the mental recovery begins, that I need to take things slow, and that dealing with the emotional repercussions of everything that has happened since the diagnosis is a big and important task. His main advice was to be careful with myself and to take things as slowly as I can. He smiled and said, "You don't have to see me again for three months!" (At that point, I'll have bloodwork and an exam - no scan yet, unless there seems to be a reason for it.) Before I left, I got hugs from both the doctor and from Deb, the nurse who'd called with my results on Friday.

So, here I am, reeling. I just got off the phone with my brother, Jason, and, after I went through all of this and my concerns and the pressures and the what-will-happen-nexts, he said something like, "Well, the storm has passed now and the water is calm. It may still be foggy, but the water is calm." A wise fella.

When I'm anxious, I like to go for walks, but through most of this, I haven't had the strength to really do that in the way I want to - alone and for as long as I like. I'm still not up to a lot, but today when I woke up with a belly full of worry, I bundled up and went outside. I know that I've gotten to the important point of the walk when I stop staring furrowed-browed at the sidewalk just ahead of my feet and start looking up at the houses and trees and squirrels and sky. That's when I can really breathe. And that's what I'm hoping to find my way back to - a feeling not of just making my way down the path, but looking up to wonder at things and take some deep breaths too.

Thank you - again and always - for listening to me and helping me and sometimes carrying me. I can never say what it means to have your support.

Xoxo,

Sara

2014 October 29 - Fatigue and Music and a Garden (Lotsa Update)

Hey there,

I've been wanting to write to you all for days, but keep running out of steam before I get to it. Or maybe my mind has just been working on what to say? There are too many things...

I've had some ups and downs since I last wrote. It's still difficult for me to process just how physically exhausted I am. Generally, I have 3-5 good hours in me on most days and a little less than that on others. I think I've written before that people say the effects of chemo are cumulative. Amanda, my psychologist/therapist at the cancer center has confirmed what I'm feeling - that it's the exhaustion (fatigue) that people are referring to. I just feel worn out almost all of the time. Amanda says this is the norm and reminds me that this is not just the kind of tired that requires a nap and a good attitude, but that my body is recovering from a systemic assault. That word - systemic - comforts me, justifies what I'm feeling.

When I went into Amanda's office last week, I sat down and said, "I'm a mess." I'd been so anxious - about the scan and whether the chemo did all it was meant to do, but even more about the tidal wave of real life I can see coming at me. I'm this little weakling on the shore and the wall of who-I-was-before is barreling at me with a speed and force I can't control. Amanda told me that this time - the moving out of treatment and beginning to reintegrate into "regular" life while managing my own and other people's expectations for how quickly I "should" bounce back - is one of the hardest parts of coping with cancer and treatment. Many people find this transitional time as hard as the diagnosis/beginning of treatment; some find it harder. Another comfort - it's normal that facing and moving back toward what I used to do/know/be is terrifying.

Aside from all that intensity, you know from my last cooing tiny update about that wonderful wedding I attended, that I've had some good moments too.

The day after the wedding, I saw Ryan Adams perform at the Peabody Opera House. I bought the tickets months ago and, over the course of my chemo treatments, came to think of this concert as my big celebration. So many times, I thought, "After my last chemo, I get to go to the Ryan Adams show!" It was precisely the right number of days after treatment so that I was nearly certain I'd make it. (This hope was complicated by the fact that I missed two other concerts this summer because of cancer treatment issues.) I'm usually always listening to music - around the house, in the car - but since my diagnosis, all I've been drawn to is Ryan Adams's album Ashes & Fire; many of the songs resonate, but the one that has really hit me is "Lucky Now." Like I think of the Emily Dickinson reflecting pool by the cancer center as "my place" for this time, "Lucky Now" has become my song for grieving an old me and thinking about the future. Anyway, I really, really hoped he'd play my song at the show!

The day of the concert, I actually spent 45 minutes creating a twitter account just so I could maybe try to tweet a song request. I totally chickened out. I decided to put my request out to the Universe instead, sending hopeful thoughts throughout the day. So, I'm at the show and it's great and I'm excited and enjoying myself. The music is awesome; Ryan Adams is funny and charming. After the first four songs or so, I stopped my constant wishing for that one song and sunk into just having a good time. So many songs I knew, such a good vibe. Loved it. Then, maybe a little over halfway through, the band left the stage so only Ryan was there. I figured this was where he'd do a tiny acoustic set, maybe two or three songs, before the band came back. He's at the mic in the middle of this big, decorated, lit-up stage and he starts to strum and I think maybe... Abruptly, he stops playing and walks over to the very far edge where the stage juts just a bit into the crowd. The lights go down on the main stage and there he is standing alone in front of a single microphone all strung up with white twinkle lights. He starts to play and... it's what I hoped! When he's done, he goes back to the main stage, the band returns, and then they're rockin' again. One song. The one I wanted. And illuminated by twinkle lights. I know that wasn't just for me, but it sure felt like it. Magic.

I know some of you remember this classic line from the first episode of My So-Called Life: "You're so beautiful, it hurts to look at you." Last week, I met Shawnessey for a tour of the Botanical Garden. When I arrived, she was sitting out front with a wheelchair for me. Since I hadn't seen the garden before, she wanted me to experience the whole of it without getting too tired to enjoy it. The wheelchair was a blessing because, honestly, just getting myself ready and to the garden that day had worn me out. I willingly submitted to riding and was quiet for the first little while as Shawnessey pushed me down paths and I got used to this moment in my life. The moment when, after being alone and mostly quiet inside my apartment for days, I came out and took a seat and here was all of this wonder. (How is it that I'd never visited the garden before?) Something about me being in a wheelchair and that day feeling so... unabashedly, adolescently fresh brought tears to my eyes. This was a moment so beautiful, it hurt to look at it. I fell in love with the garden, but maybe also with an imagination of going back someday when things are in bloom, and I can feel the muscles in my legs as I walk and walk and walk.

I'm starting to feel more positive about not just the CT scan scheduled for Thursday, but the future. I'm excited to live more and write more and travel more and love people more. I want to have so many chances to be more of who I am. But I'm nervous too. Your peaceful vibes and prayers - always welcome - will be much appreciated on Thursday morning, and again on Tuesday morning when I talk to my doctor about the results. I'll fill you in as soon as I know anything.

For now, I'll thank the heavens for live music and and fall and hope and people just like you.

Xoxo,

Sara

2014 October 16 - And It Is Sweet (Lotsa Update)

I thought it only fair that, after last night's sorta low and sad update, I share with you a little moment from today.

Feeling still tired, but quite a bit heartier this afternoon, I made my way to my counseling appointment at the cancer center. Topics were intense and I left the therapist's office a little shaky, making my way to my new favorite spot, the hope monument/reflecting pool on the hospital complex. I thought I'd just sit quietly and breathe for a little while. Down the way, a street preacher was blasting his message through a megaphone. Not the vibe I was hoping for. I don't usually listen to music on my phone, but remembered that months ago, when I started taking guitar lessons, my teacher had asked me to make a playlist of 5 songs I'd like to learn to play. I dropped the guitar playing after my surgery, but it turns out my January self knew just what I'd like to listen to today. I've been sitting here, in the sunshine, looking at the pond and watching the people pass, listening to the loop for a while now. And it is sweet.

Peace and fall breezes,

Sara

PS. If you're curious, the songs particularly appropriate today... June Hymn (The Decemberists), Me by the Sea (Edie Brickell), Somewhere Different Now (Girlyman).

2014 August 16 - As True as the Pain (Lotsa Update)

Hey there,

I understand that maybe my last post had some people a little worried. I'm here to let you know that as true as the pain in that post was, it's just as true that this week has been pretty ok. And ok is ok.

By Monday, my mental state was quite a bit better and on Wednesday evening, I felt physically well enough to get myself out of the house for a little trip to Target. Later in the week, I was out and about for doctor appointments and small errands, and even made it to UMSL for a couple of hours to meet with Jean and a few coworkers. Today saw an old-style (meaning pre-cancer-Sara) brunch with "the gals" at Home (in Maplewood - you should go there!), followed by a visit from Angela and Leeli. (Berries and brownies and pastries, oh my!)

While the week had all those good spots, I've also been blown away by tiredness. Like, seriously, I can't get up the gumption to take out the garbage? Nope. (Don't worry, I plan to ask for some help tomorrow. It's gotta go out.) Really, getting in bed at 5pm (even though I won't be able to actually sleep till after midnight)? Yep. I overdid it a bit on errands and aggravated all the healing-in-progress with the old port site and the new one. It's been two weeks since those surgeries and there is still occasional bleeding, which is stressing me out. Who doesn't want to have to go back to the hospital/doctor for these ports again? This girl. Ugh.

Man, I didn't mean for this to turn into another downer update! This is all just really hard and that's the honest-to-goodness truth. When I have the mental capacity, I do try to look for the good parts and appreciate them, to see the bright spots. Brownies and milk, hearing Finn and Nate laugh and play in the background while I'm talking on the phone to Alexis, walking into the Touhill, sitting under a tree for hours at Fozzie's. Figuring out how to manage each day is the game right now and I guess those bright spots make me think I'm figuring it out ok.

Are you interested in some deep-thoughts rambling? During an email exchange earlier in the week, a friend asked me, "So, what does the aftermath of chemo feel like? I've never talked to somebody who's done it." I haven't responded, so he probably thinks I'm ignoring the email, but really, the question flummoxed me and has been floating around in my head for days. What does it feel like? I'm not going to answer here because, frankly, you guys got a good taste of what it feels like for me in that last post. It feels like the end of everything good. But, as I've thought about that question all week, what I've come to is this: the intensity of the experience of "aftermath" slips away slowly, shifts into these kind of shadow memories, and then I put them away because I'm gonna have to go through it again, and how could I if everything stayed fresh? So, maybe the important part of what thinking about that question brought up for me is what the wise people talk about - living in the moment. Aftermath of chemo moments suck. Like, really suck a lot. But once they're slipping away, maybe the point is to be in the moments that suck less, and then even less, and then eventually move to the ones that are ok, and then kind of good, and maybe eventually (heavens, please) there will be some that make it closer to the joy side of the spectrum? So, friend-who-asked-the-question, when I see you next, maybe I'll try to describe the physicality of what it feels like. If I were you, I'd be curious too. But, in the end what your question opened up for me is a way to remember that the aftermath is a present-tense that has passed. For now, I'll just be here in this moment, in my bed, watching the Roku logo bounce around my tv screen, worrying about my dog and my stitches and why I want to eat pot roast so bad. I'll let the aftermath be a shadow while I sit in whatever today happens to be. It's all we can do, right?

Thanks for reading and for caring and, as always, for being you.

Still just appreciating all the genuine love and support...

Yours,

Sara

Ps - More about my beloved canine whose happiness-management just seems like too much for me to handle as I go through this treatment. As I mentioned before, Elgin has been staying with very generous friends in Tulsa and I need to find her a new situation in Tulsa, St. Louis, or somewhere in between. She is 8 years old, weighs about 25 pounds, and is a terrier mix. She has lived with cats, though if she moved in with some again, would need help re-learning not to chase them. She occasionally has doggy-friends, but can have a hard time meeting new dogs. She has a hard time getting comfortable with new people too, but once you're in, you're in and she'll love you forever. (She and I have that in common, I think.) I would not feel comfortable having her around small children. If she is afraid and wants some space, she can aptly warn an adult who is paying attention, but a little one might not get the message. If you know of someone who might want to foster my darling for a couple of months, drop me a line. And again, thank you. Xoxo.