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 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.