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 15 - Strokes of Certainty (Lotsa Update)

Hiya,

Well, I've had a few people check in over the last couple of days to see how I'm doing, so I know it's time to send an update. (Don't get me wrong, I don't mind the checking in!)

The 10/7 treatment's tentacles seem to be longer than those of other treatments because usually by the Wednesday after (8 days), I go out and do some little thing - therapy or a quick trip to the store, something, but I'm still feeling crummy. Just so freaking tired and weak. I've been told over and over that the treatments are cumulative and particularly the fatigue is, so maybe I shouldn't be surprised, but man, I just feel beat beat beat down. I'm getting up and around enough to stay caught up on work, but that's pretty much the extent of it. Get out of bed. Work. Rest. Work. Rest. Go back to bed. It sucks, but I am hoping for a turnaround in the next couple of days. (And it is actually a relief to have some work to be responsible for - makes me feel not totally useless.)

With all of this resting, I've been watching a bunch of TV shows and movies, and characters with cancer just keep popping up. The other day, I watched no fewer than 7 different movie trailers before deciding on one that looked good. What was not in the trailer? Main plot line - cancer. The next day, watched another one and guess what? Cancer. The '90's family drama I didn't watch in the '90's, but am now totally sucked into - a whole season about cancer. Is this random?? Ugh. I don't know, but I watch them anyway. Earlier today, I actually found myself nodding and saying, "Totally," under my breath while watching one of the characters deal. Not sure what the use of all that info is to you... I feel crappy and am watching a lot of TV and thinking a lot about cancer. No big surprises there, I guess.

I said a while back that I'd tell it like it is, so...

I have a CT scan scheduled for a little more than two weeks from now. It is freaking me out. Everything about it. What it will be like the day of, whether everything will go ok. The 4 days I'll have to wait to hear what the scan shows. What if the scan says I'm ok for now? How do I figure out how to live like a normal human again? How can I take care of myself better so I might not have a recurrence or another cancer? What if the scan shows something bad and there is another snowball to ride down the hill? Scary stuff no matter what.

Before my last treatment, someone sent me this text: "The most important thing I can say is to have no fear through this situation. One thing is common to those who were healed: they believed first that they would be healed" (biblical context). Positive thinking, faith, the Secret. I think those things are important. Then, there are all the loved ones who have told me, over the last few months, about dreams or strokes of certainty they've had - visions of me with hair and smiling, with a partner, with a child. Multiple people, independently. And they're all so sure it's real and I *believe* them. And the newest one came last night to someone who I've grown to think of as something of a seer - me swinging on a trapeze and finding the faith to let go of what's behind me and grab onto the next bar. The understanding being that the cancer is behind me now and it's time to reach forward and grab my new life. Can you see what I mean? It's all scary, the good stuff and the bad.

I confessed recently to one of my closest confidantes that I'm afraid this disease has stolen some of my boldness. Those of you who've known me a while know that I've worked really hard for the last few years to shake off fear and be more bold - carefully cultivating in myself the kind of person who looks at the next trapeze bar and thinks, "Holy shit, that bar looks far away and I'm not sure if my hands are chalked up right, but here goes!" This whole cancer thing has set me back, but I really want to get there again.

That's all off in the distance, though, I suppose. This weekend there are things I want to do. Wonderful people I want to see getting married. A concert I've been holding out hope for months that I'll be able to attend. It's only Wednesday and things can shift quickly, so here's hoping I'll see some of you out in the world very soon. And maybe we can laugh some.

Thanks, more than I can ever say, for your continued thoughts and prayers and all kinds of other good stuff.

Love and more love,

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 September 15 - Rhinestone Cap Theory (Lotsa Update)

Hey there,

It's been a while since my last update. I've thought about you all a lot and thought about what I could be writing to you. The idea of writing the update though, came to stand for the fact that this is still going on, that these treatments are not over yet. But alas, that is the truth. Tomorrow, I go in for chemo number five. (Should there be an exclamation mark at the end of that sentence? Should that read as an excited proclamation? Almost done! Maybe it should, and sometimes I do feel relieved that it looks like the end is in sight, but today is not a relieved day - too bad for you!)

Ok, so I'm bummed that the chemo cycle starts again tomorrow, but in reality, things have been pretty good for the last week or ten days. I've spent a couple of hours in meetings at work, hung out with an awesome horse and horsewoman at Equine Assisted Therapy (eatherapy.org), had brunches with friends, even went to see a movie. I also caught up on the phone with two long-losts I've been wishing to talk to. Even though I'm running at about half energy, and occasionally just stop everything and collapse in bed, all of this makes me think that I really could get back to "regular life" eventually.

I've been doing a lot of thinking about that concept of regular life and what it will mean, if everything goes as hoped with the chemo, to step back into my world. I can see a blurry imagination of what "regular life" looks like. Do you remember how old TVs used to go fuzzy or fill with rolling horizontal lines so you could kind of see what was happening on screen, but not clearly? If you tapped just right on the top or the side, you might be able to bring the picture back into focus and the characters would move along across the screen as they were meant to. Right now, I can only see that fuzz, those lines. The "technical tap" isn't quite working in my mind, but I hope a whole new antenna is coming soon.

In somewhat lighter news, I got some new glasses this week. That doesn't seem like such a big thing, except that they've become a kind of disguise. Since I've lost my hair and, now, most of my eyebrows and lashes, when I go out, I've come to feel sort of like an object to be assessed by people walking by. Most do the glance-and-look-away, some do the sympathetic smile, some do the full on hey-we're-both-just-people-in-the-world smile (that's my favorite). With my new glasses, which hide this eyebrow-less, ghostly blank I perceive, I blend better. I'm just a hipster with a hat on. Mwah-hah-hah! I've fooled them and feel a little more like I can move through the world like I used to. Time to get used to some big, chunky glasses for a while.

This whole idea of dressing and adorning for cancer has had me thinking. I'm calling this my rhinestone cap theory. I'm sure you've seen ladies out in the world, or maybe on tv, hairless and wearing a baseball cap bedazzled with rhinestones. I can't be the only one who's wondered why. Now, maybe these are prevalent because they are readily available at places like the cancer center at the hospital, but I think it's something else, something I've been relating to lately.

When I knew I was going to lose my hair, I was upset. Even as a woman who wore a buzz-cut by choice for much of my twenties, my hair is important to me. While I've perceived the rest of my style as understated, my hair was always my statement piece; it was meaningful, if only to me. Now it's gone and, especially after my surgery, my regular clothes weren't comfortable, so that part of my regular cultivated persona was gone too, so I went back to my early-twenties goth roots and took to wearing long, flowy, comfy, blend-into-the-background black things. That worked and I remembered why I loved that look so much back then, but I was on one of my first outings post-surgery and saw this t-shirt with a giant blue-eyed tiger on the front and said to the friend who was with me, "Every bald girl deserves a shirt with a tiger on it!" It was more than a month before I found the moxy to wear the tiger, but I was right. There is power in that flashiness!

This leads me to the rhinestone cap theory. The effects of chemotherapy make a person feel like she is literally disappearing. Weight goes, color goes, hair and people and happiness go. A person feels wasted and invisible. For me, at least, there came a breaking point where I didn't want to look sick and waif-ish anymore. I wanted to have some rhinestones on my cap! To say to the world, "Hello! Yeah, I'm sick, but I'm still here!" There's so little we have control over in this, so bring on the... well, rhinestone hats still aren't for me, but bring on the purple glasses and tiger shirts. I'm still here and maybe there is a little fun to be had in this horror after all.

This afternoon, I pick up from the airport Kristi, one of my oldest and dearest friends, for her third visit in the last three months. She'll be with me through tomorrow's treatment and the coming week. I really don't know how I'd be making it through without friends and family like her and all the others who have managed to come to stay with me (most multiple times!), or friends and family like you. There just isn't a way to thank you all enough.

All my love,
Sara

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.