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 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 August 24 - This Wistful Okie Self (Lotsa Update)
Hey there,
Well, it's been a pretty good week! I worked from home and got a lot of catching up done. On Thursday, I even made it to part of the College's fall kick-off meeting. It was such a relief to see so many kind, genuinely caring coworkers/friends. I was thrilled to be there.
Fridays have become a source of major anxiety as that's the day I go for bloodwork. (I've always been more antsy than most people when it comes to things like this, but all the trouble I've had with the ports has not helped.) Things went smoothly this week and it looks like both the incision from the old port (that had to be removed) and the new port are healing up ok. The best part was the reward afterward...
You all know that I grew up in Oklahoma, mostly in the suburbs, but my best childhood friend, Amber, lived more rurally and when we were about 12 (I think?), Amber got a horse. I was never a very confident rider, but something about all those days of riding the horse, sitting around while Amber did all the horse-care things, playing Little House on the Prairie, stuck with me because, a couple of years ago, I was writing and stumbled into all of these memories of life as a country girl. I woke this wistful Okie self. Before my diagnosis, when I thought I was having a surgery with a 4-week recovery time, I was texting with my brother, Jason, and said, "When this is all over, I am so going horseback riding." During my convalescence, I've been thinking more and more about that and craving just to be around some horses. Well, what did Shawnessey do? She found an equine therapy center in Wildwood that said we were welcome to visit. So, after my bloodwork on Friday, we went for a drive and spent a couple of hours hanging out with Florian and Magic and Brady and Hero (a picture is in the Lotsa site's photo gallery). I'm not near being able to ride, but we petted and brushed, and talked to them. It wasn't like a movie, where everything changed the moment my visit-a-horse fantasy [came true], but I do think I'll go back. After the horses were returned to their pastures, [Shawnessey and I] found a shady spot and sat for a while watching an empty, sprawling field and listening to the buzzing of the bugs in the trees.
The Saturday after my last treatment, I was so miserable. You know that sort of visceral, child-like place you get to when you've cried too much, and you just start saying things that come from a place you didn't know existed? Well, I was there and what I said to my Auntie Meg was, "I just keep thinking I want to go home, but I am already home. It doesn't make sense." It was seriously distressing that there was this call from some deep place and I couldn't understand it. Sitting under that tree, with that pasture stretching out in front of me and the heat and the trees and the bug noises, I had the feeling that this is home. Maybe this is what I'd been longing for in that terrible moment almost two weeks before. But, what is the this? Is it the actual landscape of my childhood - big green fields with horses nearby? Or something that the childhood landscape represents - perhaps a time when it still seemed like adulthood would bring freedom, when growing up meant realizing a dream? Maybe the home I was looking for was actually just hope for something better.
I guess all of this comes back to the first question that presented itself in flashing neon when I realized that treating cancer had taken over my life: all else aside, who am I and how do I choose to go on? That, I think, is where the hope comes in. It's sort of impossible to go on without it.
In the last few days, I've felt more acutely how the world keeps moving, moving, moving even when I feel like all my strength gets sucked up just trying to stand still and be.
There is a jumble of other things I could say, but for tonight this is enough. The takeaway: horses and lunches with friends and small revelations are all reasons to keep on keepin' on. And then there is you. Thank you thank you thank you for being here to listen and help and send good vibes and pray. It matters.
More soon...
Love,
Sara
PS. Thank you to everyone who tried to help find Elgin a new foster home! In the end, she is going to stay put with the family she already knows and loves.
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 20 - The "Help Sara Beat Cancer Fund" (by Jason Ross)
To Sara's dear friends and family-
As you know, Sara continues to undergo treatment for ovarian cancer. Though we are encouraged by recent test results, she still has a long road of treatments and recovery ahead of her. In particular, she has four more rounds of chemotherapy to endure; it won't be until mid-October at the earliest that Sara can hope to be done with this ordeal and resume a somewhat normal life.
During this time, Sara will not be able to maintain a normal work schedule and she has recently used up all of her paid leave, forcing her to go without pay for a time. Her employer has made concessions that will allow her to begin working reduced hours during treatment to retain some pay and medical benefits, but her finances will be severely affected. Also, because she does not have family close by - and because her St. Louis friends continue to give so much of themselves - she is concerned about the cost to arrange for family and out-of-town friends to come and stay with her during her chemo appointments, and in the days following when she is suffering the side effects of her chemotherapy most acutely.
I know that many of you - especially Sara's out-of-town friends and family - have asked me, "What can I do to help Sara?" Honestly, I think the thing that would help Sara most would be to alleviate some of these financial concerns so she can focus all of her energy on the healing process. I want to ask you to consider making a small contribution to a fund that will HELP SARA BEAT CANCER.
I have created a campaign at http://www.youcaring.com/medical-fundraiser/help-sara-ross-beat-cancer/206587. YouCaring allows for donations to be made directly to Sara - they take no cut from any gifts made (other than to cover transaction costs from credit card donations). Any amount you give will help. Also, you may feel free to share the campaign on Facebook.
Thank you for loving my sister, and for supporting and encouraging her in all of the ways you have.
Sincerely,
Jason