therapy

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 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 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