If you’ll indulge me, I have yet another Camino story for you.
When you walk the Camino Frances from St. Jean Pied de Port to Santiago de Compostela, there’s a stretch called the Meseta. It gets its name for the Spanish word for table, mesa, but it’s not notable for much. It is flat and dry, geographically a cross between a desert and Kansas, 220km of nothing to look at. It takes about five or six days to traverse on foot, and if you’re walking in July, it’s fiercely hot. For that reason many people opt to skip it completely, but I did not.
Not much happens on the meseta, but it’s here that the Camino starts to work on your brain. With nothing to entertain yourself, you learn pretty quickly where your mind goes when left to its own devices.
October was my own mental Meseta.
At the end of September, when I last saw my oncologist, he took a look at my routine bloodwork and declared that it looked “stone cold normal.” He also let me know I could book my scan in November and my follow up for the day after – leaving me with an “appointment-free” October.
Originally, this seemed like a well-earned break from the routine. No substitute plans or coverage would be needed at school, which was great, since I always say it’s more work to be out than just go in myself. My mom and permanent appointment co-pilot didn’t need to take time off work. I could put it out of my mind and coast until just after Thanksgiving.
But in reality, the absence of any medical check-ins during October means that I had more alone time with my thoughts… which is not a good thing when you have dialed up side effects, a big scan looming, and diminishing hours of light in the day. We (myself and my oncologist) acknowledged that this upcoming scan will be a game changer: we’ll see that either this medication has stepped up its game, and we can stay the course, or it’s time for something more aggressive.
With nothing between myself and this immense, looming possible change, I’ve been pulled between the desire to do everything and nothing at all.
I burst into tears on the way to work on October 1. I was just driving along, listening to my (rather upbeat) music, minding my own business, and bam. I’m at a stoplight and tears are stinging my eyes and I have absolutely no idea why. As I sat at that traffic light, I had one clear thought amidst all the confusion: “everything’s just happening so fast.”
It hit me later that it had to do with the date. The first day of October: one month further into treatment and the next month would be my scan. I have been busying myself with directing one production, choreographing another, teaching a class at a local regional theater, and curating a final performance with those students. In an effort to outsmart my own feelings, I’ve been determined to stay as busy as possible… to mixed results. While the logical part of my brain knows to take one step at a time, I get caught off guard in moments where the date, season, or time in general hits me hard. I feel as though I’m at the mercy of a ticking clock, grasping at all the things I wanted to see, accomplish, or achieve, while trying to manage my side effects and keep up my other obligations.
I’m pretty sure this panic over the passage of time is also why, a few days into October, I found myself obsessing over Halloween decorations. I placed an order on Amazon, made things to put on the walls, pulled out the skull-print pillows I made last year, even suspended battery-operated candles from the ceiling to look like floating candles. A few of my coworkers asked if I was having a party, and self-consciously responded that I’m not. I wasn’t even sure why it was so necessary that I decorate.
A few days later, when I was explaining to someone that some of the treatment options that are on the table are lengthy – over a year – it hit me. I guess somewhere subconsciously I decided that if I may not be up for decorating next year, I should do two Halloweens worth of decorations. I didn’t get to all the ideas I had in mind, but that’s mostly because my side effects left me feeling diminished in energy and motivation,
Back in March or April, I wrote that I was protesting the word sick. When I wrote that, I didn’t know what sick could feel like. The most impactful side effects didn’t take effect until a few months into treatment. The increased dose of my medication has built up in my system since the end of August, and nearly everything seems harder now. It’s hard to eat in a way that agrees with me, to get myself out off the couch, to walk my dog in the morning, and just to keep my apartment clean. I had no clue how much I took for granted before.
I was sick for a full weeks in October. I spent one day completely in bed all day, canceling the appointment for a massage I’d excitedly made a few days earlier. I slept for 11 hours for two nights in a row, napping during the day. I’m luckily on the other side of it now, but it hasn’t been without sacrifices. I am not drinking any coffee or alcohol. Raw vegetables leave me feeling nausesous, as do many roasted veggies, so they’re largely out – a bummer for a plant-based vegetarian. I’ve given up most dairy. What’s left? Well, I have been eating a lot of carbohydrates, with a far amount of juicing in an attempt to keep up with my nutrient intake.
It is a struggle not to measure my days in terms of productivity. I look at the dishes in the sink, the unopened mail, my growing Netflix “Watch Again” lost, and I don’t recognize myself. My time has never been spent this way in the past – I didn’t even own a television until last December.
There’s also someone different in the mirror. My body has grown soft, no longer the physical expression of my love of yoga, running, choreographing, and movement. My hair appears normal, but running a brush through it offers a slightly different narrative. I try to remind myself that I’m just getting stronger in a new way, but it’s hard not to feel your self-esteem shift when your body that you once knew so well is a stranger.
So what is one to do?
As I tell my students, you “practice your patience.” You feel what you need to feel, and you get up and go to work in the morning. You savor the moments of in-between, when things seem normal and almost like they were so many months ago. You remind yourself of what’s still there, unchanged, beneath the evidence that piles up and shouts a different story. You snuggle with your dog. You listen to Queen on the way into work and try lots of different harmonies on lots of different songs. You decorate for Halloween.
You find whatever it is that gets you through the day. You hold on tight. And you remind yourself that the sun still shines.