The Long Haul

 

“It’ll take a year, maybe more,” my doctor said during one of those first pre-chemo visits. I heard her then, but it’s fair to say that I didn’t fully understand her. I counted out the months of active treatment to pace myself, to reassure myself that by the time those 8 months were over, it would be spring.

I imagined spring and summer as the finish line, and while in one way they were, I didn’t bother to think beyond that. I don’t think I could then, in order to focus on making it to the point where the sun was out and the weather was warmer and I might have some eyebrows.

I didn’t really think about the fact that any treatment harsh enough to make those eyebrows and every single hair fall out — to make it grow back completely different than ever — curly and thick and black and white — would also probably be harsh enough to knock me back for a bit beyond.

Recovery is difficult in different ways than treatment. There is relief, sure — SO much relief, but there are also realizations of all of the things I want to do and make and be, people I want to see — an urge to make up for lost time. But when you can’t rely on your body to be the same day-to-day, it’s harder to use enthusiasm alone to propel you forward. It’s harder still, with the lingering heavy fatigue, to fight through the fog and back to the focus that’s felt so comfortable to me in most of my life.

So, on the one hand, my gratitude for surviving makes my brain spin around and around with things I want to do. On the other, my body is just not ready to do most of those things. I still need a lot of sleep. My hands are still healing from nerve damage. I can button buttons again, but trying to play bass or violin a month ago was an exercise in frustration — I felt downright toddler-tantrum-y when my hands would not do what I wanted them to. They are getting noticeably better now, but it led me to abandon working on anything music-related for a minute.

I can walk more and more, but there are days that I am extra clumsy, or nights where my legs gnaw and burn so badly that even after taking any medicine I can, stretching, doing yoga, I can’t sleep. There are many mornings that I feel hit by a truck.

There are also the occasional scares, since any new pain that lasts longer than two weeks needs to be thoroughly investigated. I went through a series of bone scans and tests last week and it’s hard not to get freaked out. But everything checked out OK, and it wasn’t, thank god, a spread of cancer.

I keep at the walking, yoga, sometimes swimming. These things are helping, I am making advances, but sometimes I feel sad when I realize how small these steps are. It felt like a big deal the first week I had three days in a row where my legs didn’t hurt going down stairs. Now I’ve gotten to four days in a row. It’s so very gradual. I am working on patience.

I am thankful to be dipping my toes back into what feels like the “real” world — the world where I can see friends a little more, do some things here and there. Work more, even if I can’t quite swing full-time yet.

I am also thankful for you friends who have kept me in your thoughts. Please do keep reaching out. Even if I am tired and can’t respond as quickly as I’d like these days, please do keep trying. I’m trying too. I’m getting there, so slowly.

I’ve long been drawn to songs about truckers and trucking, from Convoy to Phantom 309 to Little Pink Mack, I’ve long been enthralled with the idea of the road life and the long haul.

It’s safe to say this process is a longer haul than I realized.

But I’d rather have a long haul than no haul at all.