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.