Hey. It’s been awhile.
It’s not for lack of thoughts, feelings, or things happening, but the first year post-treatment involves a lot of being tired, a lot of hard work healing, a lot of change, and a lot of just figuring out how to deal with certain things.
Honestly? I just didn’t want to be writing too much about pain. That’s just a bummer.
But really, what else is it that we all really ever write about? Or make things about?
Sure, there are plenty of other things in particular, but when it comes down to it, it’s one of the main things we’re always talking, singing, writing, making things about — just sometimes more directly than others: our pain, where it came from, our path to mold it into something different — to shape ourselves into something different, transforming pain and our hurt selves into other things — things we hope are great and better, but may still feel a little busted at times.
There is more and more joy and fun and feeling like I recognize parts of my life. I try to guard the energy I need to seek all that good stuff out, and to nurture it in quiet ways on the days when I can’t quite rally my past-life rambunctiousness. Some days, it just sneaks right in.
But as I keep healing more and more, moving into feeling better and better, I still feel awkward, and not always on solid footing.
There is a thing called proprioception, and it’s a sort of sense of yourself within space — a sense of where your body or legs or hands or fingers are. It helps you figure out how to move, adjust, and your next move.
Proprioception refers to the body’s ability to sense movement within joints and joint position. This ability enables us to know where our limbs are in space without having to look.
The neuropathy I had from chemo led to some damage to this sense, and I’ve been having to recover it, little by little. The amazing thing is, it does recover. I can better judge where my fingers are on a fingerboard/frets now. I am not so clumsy, dropping things or tripping over things anymore.
And the whole thing, while really literal, feels pretty metaphorical some days too.
After getting my diagnosis, I try to find a local support group.
I find out that the medical/support community officially defines a “Young Adult” patient as “ages 15-39.” OK, whew, I fall in that range. I look into the local young adult support group. Their upper cutoff is age 30.
So, I’m too young for the regular support groups, barely too old for the local “young adult”s. Even with support groups, there’s no place to fit.
I hand over the clipboard, the nurse or assistant glances down the form, pauses, and raises an eyebrow.
“Cancer? But you’re so young.”
A version of this story has happened to me at least a dozen times over these last two years. Pretty awkward trying to figure out how to reply — often the nurse or assistant seems visibly rattled, like they are hoping I just checked the wrong box.
After a few super awkward exchanges, I just started responding, “I know, right?!?”
What the hell else can you say?
I’d like to appeal the fact of it too.
After finishing radiation last summer, I went to a retreat. I fell asleep listening to out-in-the-country sounds that lulled me to sleep when I was little. It made me feel ten years old again, at peace, and myself, even if I still didn’t totally recognize the person in the mirror.
Nerve damage from chemo was at its worst then — as I wobbled from my cot to the meeting tent, my legs wobbled like a new and gangly colt.
I methodically made my way around the pond and tumbled into a folding chair next to a 50s-ish woman.
“I’m sorry, I don’t mean to be rude, but how old are you?”
“…because you look so YOUNG. You can’t be more than what, 25?”
“Thanks, ha. Actually, add like a decade.”
I’m guessing that lady was seriously lowballing it to be polite, but daaang. I mean THANKS to everyone who told me how much it sucked to be “diagnosed in my 20s” for thinking I was LIKE A DECADE YOUNGER than I am. Ha.
In a lot of ways, my body looks the same as it did 2 years ago, besides my port scar, and a small slash on my left breast. I tell myself that it just looks like I got into a rowdy knife fight.
But everything feels so different. I’ve never had curly hair before. I ask all my curly-haired friends just how to take care of this different part of me now. Condition, don’t wash. Use this towel, that product. Air dry. No wait, use this special thing. It feels like sitting in my friend Melanie’s bathroom in 7th grade, trying to figure out eyeliner.
My hair is different, sleep is different, my dreams are different, my focus is different, my eyes are different, my balance is different, my immune system is different, my hormones — they go on pause if you go through chemo — they are back and totally healthy (pretty rad! that’s not guaranteed), but… they’re different too.
Since they’re still leveling out, they’re a bit in flux.
I’ll notice myself having some teenage feelings — angst, sadness, crushes, sudden elation, moodiness — from time to time and I have to stop and think, “Ohhhh, wait. This is like a second puberty, a new adolescence. That’s what’s up.” It makes feeling awkward make a lot more sense.
I still have tons of follow-up appointments, and almost everyone else at the Cancer Center is at least 25-30 years older than me. When they aren’t, they are the family, not the patient.
The pictures on the pamphlets and medical literature show people who look more like my mom’s friends.
There are only a few visits over two years when I spot someone close to my age. In two cases, seeing the other younger women just makes me feel so, so sad. We muster sad smiles to each other and can’t quite bring ourselves to talk about why we’re there.
In the third case, the woman seems about my age. We’re alone in the waiting room together, and we talk. Turns out she’s younger than me. But I’m a selfish jerk for silently, internally hoping that the fact she’s having a recurrence isn’t something we’ll share. I leave with an all-clear on my own test, feeling both grateful/relieved and even sadder than before.
Some days, I feel older than my chronological age. It’s a jarring adjustment for someone who likes to throw her full heart and energy into whatever she does. I like to feel wild. I want to feel full-color.
But I’m getting back to being able to walk 8-10k steps a day, which feels really, really good. All the weights and PT and work have had a pretty dramatic impact. I feel stronger. I feel younger than I did 3 months ago, and that was more energetic than I was 3 months before that. It’s incremental, and I am so proud of/thankful for the body’s astonishing ability to heal.
When I first started my job at the library, I was working an event — a panel where a handful of authors were discussing their work. It didn’t take too long to get to the tricky question — what exactly does “Young Adult” mean in literature?
I went back to the transcript of that event to try to suss out what I remembered connecting with. I found this:
“Young adult is not a genre at all. It is a perspective. The quality of the literature is no less. The complexity of the plot is no less. The seriousness of the issues is no less. The difference is that it is all about that time– it’s coming from a person who is going through a very specific change in their brain chemistry and also experiencing things, very significant things, for the first time.
…they’re going through something for the first time. I think that’s what it is, is coming of age…when you’re that age, everything’s new, and you’re going through so many different things for the first time.”
There it is.
These last two years have definitely had a lot of first-times.
I’d love for so many of those firsts to also be lasts, but for now, I’m just focusing on how thankful I am to have brand new firsts, to be getting back to living as part of the world.
My feet still feel new some days, my footing tentative, awkward, but I’m standing, walking better — understanding where my body is within space, and where it’s moving to.
Last week I got an all-clear on my mammogram. SUCH good news. This means — fingers crossed — I’ll celebrate 2 years with NED (no evidence of disease — measured from surgery date, rather than treatment completion) in November! For the subtype of cancer I had, this is super significant, as there’s a higher chance of recurrence in the first 3 years. I’m 2/3 of the way through that window. I feel about 2/3 back to feeling like myself, too.
In March, a friend’s generosity meant I got to see Patti Smith play all of Horses. It was electric. Had me in awe of just how much power she has over an audience, a room, and a feeling. So alive.
Toward the end of the set, she and the band played My Generation, spitting, singing with alternating control and abandon. And when the line came around to “hope I die before I get old,” she replied, “You know what?! I AM old. And I’m gonna get fucking OLDER”
And I thought, yes. Yes, exactly. By some standards, I’m young, by others I’m old. Some days I feel brand new, some days I feel 80. But in either case. I’m gonna get fucking older.
At least that’s what I’m trying for.
I like to think that I started out as the first (YMG) song here, and am getting closer to the later (Modern Lovers) one.