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 4 - Wide-Armed Into the Emptiness (Lotsa Update)

Hey friends,

I've been thinking about you a lot, imagining how busy life gets at the end of summer and, since so many of you are academics, the fall really kicks into busy mode. In comparison to all that, what I've been up to seems so slow-mo.

The aftermath of treatment number five went just about as expected. Kristi was a quiet wisp of a companion, taking care of me and my home, and spreading her calm energy around. After she left, I had a few more days of feeling bad (punctuated by lovely visits from Shawnessey and Jen). As I've come to expect, 10 days after treatment, the acute side effects had settled and I was left with just this vast fatigue. I'll take it! With fatigue, I can still go for occasional walks and shopping and work some, and even lunch out now and then. By this point in the cycle (end of the third week), I've even felt up to dropping in for a meeting at work.

On Tuesday (10/7), I have my 6th (and last scheduled) chemo treatment. I've spent the few weeks since #5 with my mind on what happens next, and thinking about that has me terrified into silence. The possibilities are stunning. This is stare-silently-at-the-wall/ceiling territory. I actually had a dream last week (after taking a long walk by myself, something I hadn't done yet on my own) that I was making my way down the sidewalk and it ended at this giant pool of darkness - not particularly scary dark, just dark. I wanted to keep walking on the sidewalk, but it didn't go on, so I leapt, wide-armed into the emptiness instead. There's a metaphor for ya. Yikes. Lots of uncertainty around here.

I have a CT scan scheduled for October 30th and the follow up with my doctor on November 4th to see what happens next. In whatever way you pray, please do that for me over this next month.

Right now, I'm sitting in one of my new favorite spots, though I can't take the credit for finding it.

A large part of my junior high English curriculum was memorization of poems; sometimes we had to write them out, punctuation and all, and sometimes we recited them for the class. I guess I was about fourteen when I had to memorize Emily Dickinson's "Hope is the thing with feathers." It's become a sort of life-long touchstone for me - my poem. At 23, I got my first and only tattoo; it was inspired by that poem.

Last week, I had my regular appointment with my assigned counselor at the Cancer Center. (The Oncology Psychology program is endowed so current and former cancer patients get free therapy and other services - it's fantastic). I was trying to describe to my therapist this amorphous yearning I've been having - for something like home or comfort - and after looping around for a while, like you do in therapy, what fell out of my mouth was this, "I just want to know that someone bigger is handling things." Then, "I just want to know that someone bigger is handling things?" After 20 years of mostly skirting the issue, I was pleading to let myself really believe in God or a connected Universe, or Something bigger than just little, frightened me.

I left, sort of stunned and sad and meandery. I didn't want to go right back to my car and on with my day. I wanted to be outside in the sun, under the big sky. I wanted to take a deep breath. I couldn't seem to find a way out of the Cancer Center except into the exhaust-filled pick-up and drop-off area, so I asked the woman at the info desk if there was some way out to nature. She told me to go out the main exit and keep walking for about five minutes and I'd come to a pretty little pond.

It is a pretty little pond, but it's also a monument (designed by Maya Lin, I'm told). The first thing I saw when I walked up to the reflecting pool was that the center piece of the monument is my poem. There, in the metal that lines a circle set into the water, is the whole thing in a string. "Hope is the thing with feathers that perches in the soul, and sings the tune without the words, and never stops at all; and sweetest in the gale is heard, and sore must be the storm that could abash the little bird that kept so many warm; I've heard it in the chillest land and on the strangest sea, yet never, in extremity, it asked a crumb of me. -Emily Dickinson."

Some people see my finding this place, with my poem, on that particular day, after making that particular plea, as a sign. I'm not sure what it is, friends, but the way the light shines through the letters sometimes makes it feel like it's something, and it makes me feel a little more peace while I sit and stare at the wall.

Sending love and hope and thanks to you.

Xo,

Sara

2014 August 26 - Chemo #4, A Comforting Arm (Lotsa Update)

Quick update. Made it through chemo infusion number 4 (of 6). The magnificent Sarah Whitt is here from Philly to be with me for the treatment and the coming week. Shawnessey also stopped into the infusion center for a little while so Sarah could get some lunch. (Just all kinds of bright energy bouncing around that chemo room!)

There was a little holdup yesterday when my doc's office saw my bloodwork from last Friday; my white blood cell count was too low for treatment. After some fancy maneuvering to get unexpected (the doc's office calls it "stat!") bloodwork drawn yesterday, we learned late last night that I had rebounded and treatment could go ahead on schedule. In other bloodwork news, my Ca-125 is down to 7.5. My doc is pleased with this and imagines it will stay here and not go lower.

Now, I'm home, extraordinarily tired, about to have a snack and go to sleep. I'll appreciate your prayers, thoughts, vibes, and other good stuff for the coming week.

Love and more love,

Sara

Ps - The great thing about being with a good friend is that if you're just too tired while waiting for the hospital valet to bring your car around, there is a caring shoulder on which to rest your head and a comforting arm that slips around your back. Xo

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 4 - Wounded Deer (Lotsa Update)

Hey friends,

Just a quick update. I had a pretty great week last week - worked from home, ran errands, and generally felt a breath of what life used to be.

Thursday, I noticed that something seemed off with my port (the access point implanted in my chest for delivery of chemo, blood draws, etc.)   I went in and had it checked out but nobody could see an issue. Then, on Friday, I noticed again that something didn't seem right. When I went in for my weekly blood draw, I was told that the port was pushing out through the skin and needed to be removed immediately. (This can be very dangerous since the port creates easy access to a main artery; a problem like this was one of my biggest fears.) So, right then, with Shawnessey'a help, I underwent a procedure to remove the port and made plans to have another one installed Monday, in time for my scheduled chemo on Tuesday. Ugh.

So, today, Shawnessey-the-amazing, picked me up and supported me through a very stressful day during which I had another minor outpatient surgery to implant a new port. The experience this time was so much better than the first time and hopefully the long term result will be much better as well. Ugh again.

Ok, enough with the frustrating news! Good stuff now... My darling Aunt Mia arrived from Denver tonight to join me for chemo week. It's exciting to see her again and I see many episodes of Parenthood in our future.

Some of you may have seen that the fundraising site* my brother launched to help me afford the costs of making it through all of this is going extremely well. We've surpassed the goal and I am just absolutely stunned by the generosity of people who have given and people who have shared the info on FB and in other ways. It is unbelievable and I can never say enough about how grateful I am.

I started this update with info about a few seriously bummer days and I'm ending with thanks for being as awesome as you are.

And with this quote I read today from Emily Dickinson; it may be out of context, but I love this line for what it is and what it helps me hold onto today: "A wounded deer leaps highest."

Tomorrow, I take another leap. Thanks for being there to help with a soft landing.

Xo

Sara

http://www.youcaring.com/medical-fundraiser/help-sara-ross-beat-cancer/2 06587