Cycles/Seasons/October

It’s been a weird few years. It’s been a weird few weeks. Still processing a lot of junk, so it’s good I don’t have to have a Hot Take on anything, ha.

Reflecting on cycles and patterns and constants and changes and seasons.

So thankful to be here. There is so much to be thankful for ❤

October 2014 (not easy but the calm before the storm)

magic in the minimall parking lot

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best bud #muppetdog

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finally stopping in!

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white witch #ootd

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October 2015 (fuck, fuck, fuck, fuck, fuck)

looms & grown-up coloring books – #giftsofart has really stepped up their game!

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Portrait of me & Phoebe💖, plus the Worm Family

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🍏twins 2/2 👯 @ the #zineshow

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October 2016 (so tired, slowly emerging from a cocoon) 

my new place #domes ❤️💛💚💙💜#hippiemodernism

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#latergram #hippiemodernism

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rollin' up to my mammogram w some sunny day pamp. wish me luck! ✨

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primary

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always great pickups at a farm sale

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seeing buddies w buddies #lovedatbear

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October 2017 (ok, ok, here we go, slowly whew.)

after the party

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good weekend/thankful ✨

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monday

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I bought these boots 2 years ago, then promptly had to pack them away. my feet and legs got too jacked up from chemo for me to wear anything other than sneakers for a long long time. I’ve been healing, though. *** I took them out of the closet last month and this last weekend was the first time I was actually able to *wear* them. *** Yesterday, after a nervous morning, I had a clear mammogram. ‼️🤞Fingers crossed, in a few weeks I’ll get to celebrate 2 YEARS cancer-free. (really significant wrt my initial diagnosis) *** So thankful for these feet, to be able to stand and walk and dance almost like normal again. So thankful for my loved ones, J, #sparkycoupon and the rest of my extended friend-family. So thankful for sweet friends and acquaintances. *** Most of all, thankful for a second chance. Thanks for taking good care of me, friends. ✨❤️💪

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goodbye Kiwanis, you’ve always been there for me 💖

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explorers

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riff/pj mission accomplished! 🎧❤️ #rockandrollhighschool

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Young Adult

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?”

“Um…”

“…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.

Let’s try.

 

 

I like to think that I started out as the first (YMG) song here, and am getting closer to the later (Modern Lovers) one. 

 

Lashes, Haircuts, Time and Healing…

Lashes, Haircuts, Time and Healing…

My eyelashes are falling out again. My doctor said that that was pretty normal in the year after completing treatment — that she knew one woman whose lashes had fallen out and grown back again FIVE(!) times in the following year. When my eyes get all irritated a few times a day, it’s just a “hey, stop and reflect for a moment” reminder.

Some days it is reassuring and feels triumphant to think about where I was a year ago. Most days I feel thankful, but it’s an exhausted-kind-of-thankful. An “oh my god, I just ran a marathon and you’re telling me I have to keep walking?!” kind. I absolutely adore my job and everyone I work with and all of my friends and all of that, but there’s a part of me that just wishes I could go live on a beach for about a month, and then come back, feeling more ready for the rest of the world and life and weird times that will require energy, resistance, defiant joy and transformative love each day.

How do people do this — come back from the strange semi-there world of cancer and treatment and recovery — if they don’t adore their job, their life, the world and people all around them? It’s hard enough when so many of those factors are so right that you feel like you’ve won the work/friend/community lottery.

Some days the sadness and anger bubbles alongside that thankfulness. One of my guiding reassurances since my teen years has been that thankfulness crowds out a lot of unpleasant emotions. That’s true, but it only seems realistic to recognize that those other things also have a right to exist, to be felt, to be processed over time, to be channeled (oh, oh, I am SO practiced at channeling feelings), and perhaps, eventually to be let go.

That is part of the fundamental work of healing, but for me — someone who has always taken a long time to process things but a short time to check most things off a to-do list, — it’s disconcerting to realize that that healing has a longer timeframe than I had initially thought or that I would wish it would.

Synthesis is still more challenging than it used to be. Energy/fatigue is still a challenge. It takes me at least three times as long to do most things as I think it will. I know it will continue to get better. When I look back, I can see it getting better, but it’s hard to let go of the fantasy that life after treatment bounces back quickly to what used to feel comfortable and normal. I imagined a different timeframe. I needed to believe in a different timeframe in order to meet treatment with the attitude I wanted to have. My stubbornness/tenacity can be both a gift and an additional source of frustration.

I am changed in ways I did not want to be changed. Besides the big things, the scars and the way my body cracks and pops eighteen times when I get up or sit down, my skin is different now. My immune system still has some healing to do too. I can’t usually sleep on my left side without this weird-and-kinda-annoying-but-nonetheless-helpful pillow thing. But U of M has pretty amazing resources, doctors, and occupational/physical therapy folks with an amazing breadth of knowledge to help folks with quality of life issues after treatment. And for that, dang am I thankful.

My neuropathy in my legs continues to heal, slowly but surely, and I’ve gotten help for some other post-treatment issues/challenges. Through the LiveStrong program at the local Y, I can really see advances in my strength, which is heartening — especially on the days I feel frustrated. And most days, walking down steps does not hurt at all anymore, which is a huge positive too. I can walk to or from work a day or two a week, and my doc says that my daily step amount is remarkable considering the amount of neuropathy I started out with. That’s reassuring, but also just makes me laugh at myself, because I know that part of that is just that I am tenacious (stubborn!), and like clearly measurable goals.

The hair on my head is proving sturdier than my eyelashes, and is wonderfully curly and getting healthier and softer. It’s odd that it’s so dark, but I dig the Rogue/skunk stripe at the front. I just had my second haircut, which doesn’t even seem real.

haircut buddy

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Time is still moving strangely, but slightly less so with each week. Instead of barely making it through a few hours of Tiny Expo post-chemo-sesh, this year I was actually able to be more involved again in the planning and execution, and I saw and hugged and helped and chatted with so many friends. Jeremy even unveiled a few new prints, and my pride in his accomplishment and refocusing make my heart swell.

The biggest thing I notice in these last few months? It’s been slow (like me!) and gradual… My own life has less moments of feeling foreign to me, which is, I think, a lot of what I’m learning real healing is about.

 

 

 

 

 

 

The Long Haul

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.

 

 

 

It’s been a minute, I know…

…the biggest news is that last week I had my VERY LAST (I hope forever) radiation treatment.

Everyone was asking how I was going to celebrate, and my most common response was to laugh and say “with a nap!” — which is definitely funny, but also the only thing I could imagine doing, with how tired I was. And with how much my freaking legs hurt.

And so, I wasn’t at all surprised when immediately after ringing this bell, I cried out of sheer relief and then Jeremy and I both crashed out on the couch for a couple of hours.

bell

It was a long haul. I’d started an entry about that very fact, but then abandoned it. Because I was so tired. I’d started to write about the different ways I was measuring time and how strangely it was moving, but I abandoned that too, because I was so, so tired. These are things I might share eventually, but lord knows there’s some major typo-checking and copyediting that my brain just wasn’t up for then.

It was the type of tiredness that makes you cry simply because you are exhausted and you feel like a mess and you can’t imagine NOT being exhausted even though you know logically/abstractly that at some point, yes, you will feel better. You know certain things could be true, but you can’t quite grasp feeling that they are true. I imagine that new parents understand some of this type of exhaustion.

It’s like chronic pain, or depression — how when you are really in the midst of them it feels so difficult and far away to imagine NOT feeling that way.

The radiation was so exhausting at the end — moreso probably because it came after months of chemo (anemia! neutropenia!) and left me with some nerve and muscle damage in my legs that I thought should start to get better but instead was just stubbornly hanging on, interfering with how restful my sleep could be and my ability to get around.

Oh my goodness am I ever thankful for these treatments and all the research that went into them and the simple fact that they exist (protocols this-often successful simply don’t exist for many, many other forms of cancer), but whoa, man do I also realize that they are very hard on the whole body.

It will still BE a long haul. I may be reaching out to some of y’all who offered help waaay back when. As relieved as I am to be on the upswing (SERIOUSLY, SO RELIEVED, GUYS), it will take a few months to get more energy back.

Drs tell me most people take about 8 weeks post-radiation to feel at about 80% energy. This actually sounds AMAZING to me at this point, since the last few months I’ve felt like I’m at about 25%. Today, after sleeping 12 hours fairly restfully, I feel at about 30% and that feels AWESOME.

 

Cindy Sherman

Cindy Sherman

If it weren’t for the cancer part, I could probably get into this whole wig thing with a sort of Cindy Sherman approach.

There are endless reasons to think about gender and performance and its construction throughout breast cancer and its treatment, and every single day when I figure out what the heck is going to go on my head — short hair? a hat? long hair? — or have to take a few minutes to draw in eyebrows, there are at least 5-10 minutes I’m mulling all of that stuff over.

And there are, of course, lots of opportunities to think about ability/disability and those things which are temporary vs. more longterm. There are ways to put my own experience within a larger context that acknowledges how lucky I am in so many ways.

And yet, there are still moments, hours, and days, when I still get stuck in thinking “yeah, this sucks.”

And I know it will suck less soon — I’m less than 2 weeks from my last radiation session. But at the moment, I’m worn out. I’m glad it’s the weekend, because at least I don’t feel like I should be doing more things I don’t have the energy to do, and I get a two-day break from the radiation table.

photo: Untitled #88. 1981, Cindy Sherman