This post is brought to you by my favorite band, the Indigo Girls, the "shall remain nameless anti breast cancer" drug, and my wonderful, supportive friends and family. If you aren't as in love with the song as I am, you might want to read the lyrics to make sense of my writing: Lyrics to "Closer to Fine"
I've been an Indigo Girls fan since my senior year in high school, roughly around 1991, when I spent many hours listening to music in cars with boys. Although I find it deeply ironic that straight, white men introduced me to Amy and Emily, so it was. Their music changed my life.
In particular, one song always spoke to me the loudest. I was one of those kids that make better adults. I was serious when others were jokey; I was heartbreakingly real instead of cool. I only knew how to be myself, and it wasn't always easy to be that self. I never mastered that "couldn't care less" attitude that let others breeze through middle school corridors. Or high school hallways. Or college dorms.
So I fell in love with these two girls and their music, self styled outsiders who sang honestly and authentically about not being cool, or funny, or anything but serious and real and scared sometimes. I was a perfectionist, never up to my own standards. I was a seeker, always trying to learn and search and explore and improve. I was pretty sure I was alone in feeling that way. But their music made me feel like maybe I wasn't the only one.
A few months ago, I went to a wedding. It was beautiful and full of love and exactly the kind of wedding you want to attend. It made me feel good just to be there. I was seated next to an attractive, dynamic woman a few years younger than me who disclosed over dinner that she had been diagnosed with breast cancer several years ago. Later, she mentioned that she was a social worker. I about fell over. I'd like to tell you that I was sad to hear of another woman diagnosed so young, but that wasn't my first reaction. My first reaction was disbelief and then I was ecstatic. I was so happy to have someone to talk to about it.
I've mentioned before about cancer being isolating, about how I almost hate writing about myself in this way, about how I don't want to whine. All of those things are true. I think I have a good life. A great life. I know how bad breast cancer can be, and is, for so many. But it still sucks for me. I wish there was a more eloquent way to express that sentiment. Cancer. Sucks.
I hate how cancer has changed my body - my body that I was, for the majority of my life, in love with. I liked how I looked. I wasn't perfect but I was me. But this body is one I'm still not used to. I barely even know it. I haven't fallen in love with it yet.
I hate how cancer has changed my actions. Before cancer, I was strong in my legs. I could complete a half marathon. I could take a long yoga class. I could walk for hours. Now, it's different. Fatigue and pain followed both surgeries; the anti-cancer drug I've been on since February comes with side effects that include joint pain severe enough to limit my mobility and bring me to tears of frustration.
The first month I was on it, no side effects! I thought I dodged them - I was one of the lucky ones. Then in month two, it felt like the flu, the way your whole body aches and then settles into your joints. I figured out pretty quickly that it wasn't the flu, but drug related. So I looked for answers. (I went to the doctor, I went to the mountains) I exercise the prescribed amount to prevent the joint pain; I take the correct amount of supplements shown to combat the discomfort. I follow the recommendations on sleep, and activity, and whatever else has been shown in real, legitimate research. I work consistently to prevent it. But sometimes I don't prevent it. Or I can't.
I feel embarrassed to admit this, even to my closest friends. To say "we need to find a table; I have to sit down because I'm in pain" feels really awful. I've canceled plans with girlfriends. This weekend I had Nick turn around and take me home to rest instead of to a family party. Last summer I walked 5-7 miles a day in London and felt terrific; this summer in Vienna I could barely do 5 miles a day, and not consistently without hurting. It annoyed my companions and it brought me to tears.
This week when a friend texted me about the Indigo Girls and their song Closer to Fine, it reminded me how much I love the song, how long it's been "my" song that I use to define myself, how I'd always loved these particular lyrics and how I'd long wanted to get them as a tattoo:
The less I seek my source for some definitive, the closer I am to fine
This is a very long of way of saying that it's been a little rough lately. It seems my (very reasonable) expectations for myself have to change. And I hate that. I hate every bit of that. I want to believe that if I just get it "right" I will feel good and not be in pain and not have to slow down or change the way I move through my world. I don't want cancer to change one more thing on the long list of things it has altered without my permission.
I want an end date to this. I want to know that if I search for and find the right answers, I can make it work. I can be back to normal. I want an answer, a definitive answer, a fix that says "okay, this pain will not get worse or continue, just do this and that and it will be done". But I don't know if that's even possible. It hasn't been so far, and it's not from lack of trying on my part. I could easily be facing ten years of this side effect, plus new and different ones.
What I think I need to do is realize that this, like everything else in life, is not fully in my control. I might have this pain for the entire ten years I'm supposed to take this drug; I might suddenly stop having it. It might be better some days and worse others and maybe nothing I do will make it go away. Perhaps it's not a failing on my part - I might not be able to "fix" it.
It could be time to get that tattoo - or at least tape those words to my mirror - to remind me not to seek the definitive. To remind me that my searching isn't useless but that all the answers are not found in the ways and times we expect them.
