Take a breath in. Hold.

—1—

The voice from the overhead speaker is kind and direct. I’m on my back, on a sheet, on a narrow metal table, arms up and grasping onto metal handles above my head. Alone in a room, giant machinery whirring, smoothly, around me in an arc.

It’s my forty-fourth birthday, my fifth day of radiation, and I’m trying to figure out where I’d put a camera. Not that I need a camera, but this experience — surreal and very real at the same time — has so much going on visually, that trying to figure out how anyone would somehow capture any part of how this feels, or just how it looks is a real puzzle.

And that’s as good a distraction as any. At least as much as the overheard speaker playing, in an unintentionally hilarious twist, I’ve Had the Time of My Life.

I see the reflection, in the large rotating pane of glass, of the blacklight-toned laser lines that locate my body within the space. I see a growing and shrinking pixelated field of yellow below my ribs, and a red orb across the lower part of my sternum as I breathe in and out. A glowing sun next to a shifting mountain.

In the giant mirror-eye above me, with its opening and closing aperture, I see a reflection of what the technician calls “the material,” a lightweight curtain of tiny brass plates that frankly look like the texture of every fancy 70s thrift store purse I own. Disco, but make it medical.

something thrifted & shiny + duct tape is pretty much how I’ve lived my life, so… fitting, I guess?

And then, for contrast, there’s the white duct tape fastening that in place, a pillowcase and a washcloth shoring up its position. Add in a few sharpie marks on my skin. Where within this could an observer, and another machine, insert itself at an angle to capture any of it?

—2—

Each day I ride downtown, mask up, and tell security I’m headed to the basement. Each day I notice something a little bit different, even if the days start to bleed into each other. A few, I make field recordings on my phone. A few I feel barely awake. Most days I hope that lockers 11, 12, or 13 are available — they’re the closest to the changing room — and my brain automatically kicks into “got a tattooed tit, say number thirteen,” which is kinda hilarious to me now. Yes, I just have one tit, but it’s the area where lefty once was that’s got the little ink dots. I think about my friend Miles and how when I first met her she showed me her number 13, then her Julie Doiron tattoo. Outside the Pirate House bonding over dumb shit. The start of a 20+ year friendship.

—3—

I’m back on the table. Being scanned, looked at, examined, adjusted, and then, well… beamed? Waves are sent at me, towards me, into me. Do the beams count as light? Is it light entering me? There’s really nothing about the radiation I can see, which makes analogies or visualizations difficult.

I stare into the weird video-game goggles and think about that EMA/The Future’s Void cover in the zine I made during my first go-round with this stuff seven years ago. I think about how I should’ve laid out that spread better, the adjacent diagram getting split more and more with each successive copy-and-staple. I think about the space between the pages and the slight pull of a scar, the attempt to join things together. I think about replication, how in libraries and archives sometimes we talk about replication supporting preservation, that the more copies there are of something, the more likely it is a copy will remain. I think about bout how that’s good for zines and ephemera, and bad in terms of cancer cells.

I think about how my tiny tattoos serve as registration marks for aiming the radiation each time. They’ve added a new one on my clavicle, a crude tiny dot. Each time they set up, I hear them say “96.5, sub-clav.” Honestly? I’d rather just have something that’s straight-up CMYK or a some random ill-advised kitchen table stick-n-poke.

Compared to seven years ago, the scene this time is much more sci-fi, the goggles narrower, and my field of vision goes far beyond the pong-ish goggle display that monitors my breathing. According to this video, I’m supposed to be using these “augmented reality glasses” to look at something in a museum, train on a Pelaton, or pilot some dumb drone. But the use of this headset today is both far more basic looking, and far more critical to my goal to keep on livin‘.

Here’s how it goes:

You breathe in, and as you do, an orange line moves up and down. Your goal is to get the orange line into the green box, then hold your breath for as long as you possibly can. Twenty seconds, thirty, more. Keep as still as possible, make deals with yourself. Learn how to keep holding when you think you can’t any longer.

During the first pass, they’re taking a 3D image. During the subsequent times that the giant panels slowly revolve around you, you can take a few little breaks. When you allow your breath to move the line out of the green square, the giant parts of the machine surrounding you pause, until you breathe in again. You’re directing and controlling this giant thing that entirely surrounds you. You feel tiny. And kinda powerful.

—4—

The zap sessions themselves are short. Years ago at U of M, I had a radiation tech who — noticing the Guns & Roses winter hat I rocked in place of hair — queued up November Rain. Those nine minutes lined up just about perfectly. Bless that dude for making me laugh/feel seen during an exhausting and isolating time.

It’s the getting to and from the hospital downtown, the waiting. That stuff means that each M-F for the last six weeks I’ve needed 3-4 hours for this daily task. One day there are four of us in the waiting room and according to the “on deck” screen, three of us are named Maria(h). All different ages, backgrounds. I learned that the kind woman at the front desk has a daughter named Mariah. I hope she never has to do any of this. If she does, I hope there’s someone as kind as her ma working the front desk each day.

—5—

It’s done. Suddenly, it’s the last day. One day earlier than I was expecting, but none too soon. The last few weeks I’ve been getting dizzy if I stand up quickly, sleeping a ridiculous amount, and feeling clumsy and distracted.

I try to show up the best I can, as a friend, as a person, but I feel really dumb and really drained. I’m supposed to go out for ice cream to celebrate, but instead fall asleep at 7:30pm. This isn’t the version of myself I want to be. It’s been a long six weeks, the last big chapter in a long eight months of treatment.

But this is it. After this, I’ll have checkups, and some additional things to prevent recurrence, but overall?

I’m free. I’m done. It’s time to get to resting, and healing, and making things, and loving all my favorite people better, and being in the world the ways that I want to be.

I exhale.

Next Up: Surgery Soon

December was pretty hard, but I kept on being able to live my life. Like, mostly at least. I was so fucking tired. I rested more, slept more, listened to records more, stared out the window more. January wasn’t easy, but it was worlds better overall.

​​The cards, the pictures and drawings, the music, the letters, the mixes, the QUILT, the care packages, the CAKE, the flowers, the food delivery. Truly, you all sent SO much love my way. I am staggeringly lucky in the people that I know and the generosity and care and affection you’ve extended to me. ❤

Onna came to visit, my brother came to visit, Bridget came to visit, Erin came to visit. Amanda went with me to a bunch of appointments and Sarah was on-deck as backup. I was extra careful with wearing a mask and washing my hands. I spent hours, days, really, on the phone with insurance. With the help of steadfast friends and literally 910 lbs. of dry ice delivery throughout 14 weeks, I kept my hair.

So when I look in the mirror, it’s the version of myself that I recognize. And I didn’t have to tell people jack shit if I didn’t want to. I admit that I had — and have — a bit of a chip on my shoulder about not letting health stuff become the most salient thing in my life. I already have a full life and identity in a billion other ways. Though I’m fine with and open about cancer stuff, it’s also something that I didn’t ask for and just have to deal with. We all have that sorta stuff at some point or another. I’m still me.

Each time over the last few months that I was worried that I wouldn’t be able to just keep going a little bit at a time, and living my life? Something changed, or opened up, or happened and it was just, startlingly… OK somehow. All of these bizarre and entirely unpredictable fortuitous and just plain lucky things kept occurring around me in January, in February. One of the biggest: I didn’t end up having to do six additional weeks of chemo that had been on the table initially. I have no idea how or why each of these randomly graceful things happened, but I’m thankful they did, ‘cause as hard as some pieces have been, I’ve been liking other things going on in my life. Which makes it tricky to think about putting parts of it on pause for a minute. But, priorities!

This coming Wednesday, March 8th, I’ll go in for surgery at Northwestern and expect it’ll take 4-6 weeks to recover. I’ll spend the first week here in Chicago, then head back to Ypsilanti around March 18th for a couple of weeks. My Chicago folks have had my back all the way, but they deserve a breather too!

For the first few weeks, I won’t have much use of my left side, so I’ll need a hand with some things in Michigan – mostly help walking my mutt Chewy and a few food drop-offs. If these are things that you feel like you could lend a hand with, my friend Onna has updated a MealTrain with some sign-up slots (also with a few things for that first week in Chicago).

Once I’m back in Ypsi, if you’re interested in swinging by for a chill-hang, dropping off some takeout, going for a walk, or whatever, hit me up! Looking forward to being a bit closer to so many of my Michigan loves for a bit. And the outcome of the surgery, well, I’ll be relieved to be one more chapter along on vanquishing this cellular malfunction. Little by little, getting there, with all of your help! ❤

The Plan, At Least Right Now…

Still have my hair!
*Weird lighting not a side effect, just my window

Hey All,
I have a lot more thoughtful things to say, but realized in recent conversations that I’m halfway (or close to it) through chemo and haven’t shared some of the basics of what my situation/plan is. I’ve been so IN IT that it’s hard to keep track of what information I’ve shared and what’s just hanging out in my head*

First, a few things, some of which I included in an earlier email:

  • Yes, this is a recurrence of the same cancer that I had seven years ago
  • It is triple negative and inflammatory (wasn’t inflammatory last time, just to mix things up and keep it exciting)
  • Blessedly, the scans of my brain, lungs and rest of my body are clear (!!!)
  • I am in great hands with Northwestern’s Oncology staff; the prognosis is good; the intent of treatment is to cure
  • From all signs so far, the cancer is responding very well to treatment
  • I’ve kept my hair so far (though my left eyebrow is making a break for it) through a process called cold-capping. I don’t look as different as you might think, though I feel approximately 3,551,314 years old a lot of days

So what’s the plan here?
What does the map look like?

Each Thursday since the beginning of November, I’ve been receiving weekly chemo (Taxol, Carboplatin), infusions with immunotherapy (Keytruda) added in every third week. This will continue through the end of January. Then, I’ll have scans that will help my doctor assess whether or not to add in two additional chemotherapy agents in February. If that happens, those infusions will be every three weeks.

Whenever I’m ultimately done with chemo, I’ll have a few weeks to recover, and then go in for surgery. I appreciate any and all surgery advice from those who’ve had mastectomy or top surgery. I’m humbled and honored that there are folks who want to share their experiences with me! What’s planned for me is a bit different, but I’m sure that a lot of the tips will still be helpful.

I’ll recover from the surgery for 4-6 weeks (likely in Michigan, I have more helpers there), and then begin daily radiation back here in Chicago. My best guess is that radiation will be for 5-6 weeks, though the nurse has said we’re too far out to really start talking about that yet. That will take me through late May or early June.

Provided that all of that goes smoothly – I’ve learned not to get too attached to a specific timeline – I’d officially be done with the bulk of active treatment in June, with immunotherapy infusions continuing every three weeks for a while. That’s easier to schedule, though, as it’s just a few hours.

Great, let me write all those dates down on the calen — oh…

Of course, plans can change any step of the way. Some days I feel totally capable of doing this; others it feels overwhelming to stare down another six months of treatment and who knows what side effects. Looking at a new year hits differently when you know half of it will have to be organized around a treatment schedule.

Still, I am thankful there is treatment, I am thankful I have access to it, and I am thankful for my body’s capabilities to heal and just be, even on the rough days. I hate having to go through this again, but signs and tests point to my body having healed remarkably well from 6-7 years back.

I continue to be immensely thankful for the notes, calls, funds, care packages, treats, and love you’ve all been sending my way. It definitely helps me keep going.

How to help

My dear friend Onna created a signup for reaching out during the winter doldrums, and it’s been a really lovely way to have an excuse to (re)connect with folks! No pressure or expectation, but if you’re feeling like you want to catch up, text/call me anytime or sign up on the list! Also, if you are generally a night-owl lemee know. Sometimes the steroids keep me up and you can ask me dumb questions into the wee hours of the morning, if that’s entertaining to ya.

Please keep sending me and Mr. Chew all the feelings, vibes, spells, prayers and whatever you can, we appreciate it and we’re sending love right back out to you all!

Grace in the Midst of Grief

Astonished. I honestly can’t even believe it. Still, after a few days of having the kindest notes and texts roll in, the cutest animal pictures and videos, the most heartfelt expressions of affection, the offers of practical support, the gift cards, the offers to drop off food, the sharing of personal stories of your own hard times and what got you through.

The sending of love, of care, of prayers, of spells, of intentions. The out-of-the-blue reassurances that something I’ve done or said or been a part of has been important to you. It’s hard to wrap my brain around the sheer outpouring of support, the amount of energy (or however you envision whatever that thing, that force is) beaming my way. A deep and expansive blessing. 

And then, of course there’s the money. Which, I admit, can sound and feel totally crass. (And thank you, Onna, Amanda, and Jo for actually making that GFM part happen!). But, we all know that in our current country and medical system, that it’s truly a concern and money is a potential buffer. Even with insurance.

I’m still just now paying off debts from going through this seven years ago (it me!). Thankfully, my insurance is supposedly better this time, but I won’t really believe that ‘til I see it. I know more now about all the assistance programs nobody tells you about and aren’t easy to find, so hopefully that knowledge helps too. 

Really, it’s what all of your generosity represents to me. That’s what has me so overwhelmed with thankfulness and gratitude for knowing so many amazing, giving, loving people. Despite the cruel bad luck of cancer, I am immensely lucky. I already knew that, but I do think it’s so valuable to be reminded of that at a time like this. I am deeply humbled. 

Things still feel so brutal, and scary, and sad. Some of the supports I thought I could rely on have already fallen away, and I’m only six weeks in. AND, at the same time, so many more have shown up! I know I am held up by my community. I am loved, and in a way it doesn’t even matter if I deserve it or not. 

It’s grace. It’s the closest word I can find. Not in a religious sense, but in a “we take care of each other,” sense. In a way that gets at something that I kept feeling an reminding myself of seven years ago, and as I was healing:

“You’ll be given love
You’ll be taken care of
You’ll be given love
You have to trust it

Maybe not from the sources
You have poured yours
Maybe not from the directions
You are staring at

Twist your head around
It’s all around you
All is full of love
All around you”

Of course, I couldn’t include a Bjork song without sending it out in honor of sweet Jingles, aka Ayron, who is dearly missed. These last few months sure have been harsh to so many folks I love.

Thank you for being my love(s), for showing me your own strength in your generosity of spirit, for being brave enough to love, for continuing the circles of care we provide for each other. I cannot even begin to express how much this means to me, but this is my attempt. SO much love to you all. May we face the hard things together. 

The Intent is to Cure: Or, How to Lose Your Mind in Six Weeks

Six weeks ago yesterday I got the call from my doctor. “I’m so sorry,” she said. My stomach turned, and my road trip car-mates just heard me emit a long, reflexive, “Fuuuuuuuuuck.” “I’m so sorry for using that word,” I backpedaled. “No, no, that about covers it,” she countered, “that’s an entirely appropriate response to something like this.”

Seven years ago I had breast cancer. It changed my life in innumerable ways, some of which I’m thankful for (a few even feel like real-deal miracles!), but many for which I am still not. Not everything has a silver lining, even when you’re a pretty positive person. Even when you’ve made it a practice to try to see the good.

If I made it three years clean, my chance of recurrence went down; if I made it past five, it was almost nil. Only 5% of the people in recent studies of triple negative breast cancer had a recurrence after 5 years. My scans in January were clean, my bloodwork in July was fine. And by mid October, I was staring down the barrel of recurrence.

“You’ve done absolutely everything right,” my oncologist assures me, “sometimes, unfortunately, this just happens and we don’t know why. But we can treat it.” It just happens sometimes. I’m sitting on the table in the exam room, my boyfriend Jonah in the chair beside me. I’m looking over the papers with my treatment plan. There’s a checklist of what the stated goal of treatment is, and the box that’s checked?

“The intent is to cure. ☑”

Okay. Okay.

October through November is a flurry of action, of calling and recalling, of checking cancellation lists and checking again. 50+ phone calls, 20+ voicemails, 85 emails, 40 MyChart threads, 9 scans, 2 biopsies, 19 Drs appts, 3 phone appts, and two Zoom Dr consults – one where I had to drive across state lines back into Michigan to be legal about it all. 364 miles driven for appointments, 10 ice packs of various sizes acquired (incl. mittens, booties, calf wraps, and ice helmets), 6 dry ice suppliers called, 280 pounds of dry ice delivered and schlepped.

We get the scans scheduled, the various appointments. So many calls and emails and MyChart messages. Jonah takes lead on reaching out to the oncology social worker, and his knowledge of that side of how things work comes in handy daily at this point. He’s the one who knows where to look for financial support, who walks me through my Advance Directive/Power of Attorney paperwork. Who knows where to apply pressure in this system. I’ve been my own advocate before, but this time will take both our combined powers.

But we get in for things, and we get in fast. So much so that I start chemo less than four weeks after my diagnosis. If this type of cancer is fast-moving and aggressive, then we will have to be too.

This past Friday, the day after Thanksgiving, I did my fourth chemo (out of at least twelve, TBD), on the exact date my first body/brain scan was initially scheduled. Even with orders marked as “urgent,” we wouldn’t have gotten things moving without both Jonah reaching out to the social worker and me and the nurse calling each and every morning for cancellations.

There is so much to do. So much has already happened. I’m looking ahead at 8+ more weeks of chemo, a pretty intense surgery and recovery, and then radiation. It’s going to be a long haul of at least six months, likely more. And so I need help.

I hate asking for help. It’s something I learned to do better last time, but it still doesn’t come easy to me. So, my dear friend Onna made a wishlist and a GoFundMe for me. What I can use the most, though, is love, and encouragement, cards, notes, general support.

Send me your good vibes and your healing thoughts. Beam me love with intention, hug a tree for me (I’m looking at you, Laura!), gaze at the sky or something unusual in nature and think of me. Send me a song that soothes you or fires you up, or just makes you thankful for the weirdness of the world.

Whatever it is that you do to call in or send out healing energy and strength – I’ll take every little bit of that I can get!

A Conversation About Big Stuff, aka Lots of Swearing

Misty Lyn and I have been in overlapping-but-not-quite-totally-the-same circles for the last decade plus. I think I first met her waaay back in the Elbow Room/Dabenport days.

We have a ton of shared friends, and in like 2008/9, when I was involved in helping organize some fundraiser shows and stuff for one of my fave orgs, 826michigan, we crossed paths here and there again, too. And then, of course, at Old Town.

It just kinda kept happening, and I’ve glad our orbits have overlapped a little more in the last few of years. It’s been fun to see what she’s up to, what she cares about, and what she channels her energy towards — in these last few years, that’s been photography and documenting the River Street Anthology in particular.

She’s turned those photo and capturing skills to her own project this year too, in the 52 Portraits Project — a series of portraits accompanied by extended interviews with various women, set up in podcast format.

It certainly feels humbling that she wanted to spend time chatting with me. I hope I had at least a little insight on navigating difficult times, or at least that listening to this makes you laugh a little bit.

And lordy, I had NO idea that I swore so much when talking about intense things, but I guess that’s just what I do now (so NSFW, yo!). Special audio appearance by Sparky, oops!

Here’s to stories, to reflecting on the long haul, sharing them, to learning and trying to connect to each other through them – in whatever form they may take.

Thank you, Misty, for all that you’re doing, and for taking the time to chat. ❤

 

 

You Are Here: Spring to Spring Side B

You Are Here: Spring to Spring Side B

I wrote this in mid April, right after Side A, and was waiting for some space to go back and take a second look/edit.

Got caught up in a celebration of spring and friends and my birthday (which felt wonderful, fun, life-affirming) and then in quick succession, the death of a friend from cancer (which felt sad, gutting, terrifying, complicated).

But it’s time to flip things over to Side B… even if it’s a little later than I’d figured…

February 2017

You are here, this is one of the first shows you’ve been through since treatment ended six months ago. It’s harder to navigate shows with lots of standing. Walking is no problem, but your legs start to burn if you’re standing for over 20 minutes. The nerve damage from the chemo is still a daily frustration. It’s getting better slowly, though, certainly in your hands you can notice improvement. You can button buttons better again.

You’ve been back to a full-time work schedule for a month, though that’s more out of economic necessity than really feeling like you have the the energy to do it. All of the rehab and PT and working out and walk-a-lot-each-day-but-not-too-much takes a lot of other energy.

You joke with your doctor that you are the first person to use a Fitbit in order not to walk too many steps. You tend to get excited when you have energy and lose track and why not walk to work AND walk home? And then a few hours later your legs are on fire at 3am.

You’re doing all the things you’re supposed to do, and frankly you’re kind of tired of doing so much and feeling so stuck, exhausted, and still looking like a downy baby bird with no eyebrows.

But still, you are trying so hard to make room for joy. To save some energy for the people and things you love, and the reasons you’re excited to be coming out of this weird treatment cocoon.

There is this band you’ve loved since you were like 18. You were obsessed, when obsessed meant more than just heading to YouTube, when it meant finding some way to get some record or even a friend handing you a VHS tape. They’re going to play and you’ve never seen them live so goddammit you ARE going to be there.

You know it will be packed so you go early. You wear sneakers (ugh!) so you can stand longer. Your friend Greg is there and thank goodness he and your husband can hang out in a decent spot, because every 20 minutes you have to go sit down on a table of very expensive t-shirts. But still, you do it!

And The Mummies finally play and are great and fun and messy and it feels so good to be there in this place. You see people you’ve known since forever, and people you’re just getting to know. You make jokes but also still feel incredibly awkward, like a foal who can’t get its legs under it.

 

March 2017

You are getting your legs under you. Through a friend’s incredible graciousness, you get to see Patti Smith (you get to sit for that one). You get to see PJ Harvey.

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loved it at 17 yrs old/love it now. grateful ❤️

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You know you are getting stronger. You can walk farther, but you are still taking a LOT of medicine for pain. Your monthly supply of pain medicine is a full two of these bottles — wide as a can of pop, but taller — pint glass for size.

 

IMG_0239

 

 

 

May 2017

You are here. Your birthday! So many lovely friends celebrate, and you look around at the greenery slowly revealing itself and the life people have bought and brought you, and you think “abundance” and sigh and feel grateful.

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🎉plant party! 🌱

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You keep trying, and doing, you keep working.

 

April 2018

You are here and you are standing.

You are in this same place you were in just a little over a year ago. There are so many people, all crowded in. You think about the amount of medicine you were still taking a year ago just to be able to stand for 20 minutes at a time, and how now it’s less than a quarter of that.

You are here, but you have gone away on a trip and come back changed. Like some bizarre time travel Einstein shit — everyone but you has been experiencing time in a different way — all while you’ve trekked across the galaxy. It took you one year, but them 20. Or is it the other way around?

To everyone else, you were standing still — slower, even — resting, but there were so many things that shifted — things you’d thought were givens.

You move with your friend and your partner towards the stage, the band is starting. Your partner disappears into the crowd completely. No trace. That used to be your move. So many things have changed, roles flipped, patterns shifted, with new things to figure out.

You stand at the back of the crowd, you spot some folks you love but mostly you just focus on how your body feels the sound. You feel warm and thankful and alive. You don’t need to keep finding places to rest as much anymore.

Here you are, standing on your own two feet.

 


 

 

 

 

You Are Here: Spring to Spring, Side A

You Are Here: Spring to Spring, Side A

march 2015

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ufo factory bathroom

You are here. Your friends are too.
Well, like outside the door. Not IN the bathroom with you.
You are uncomfortable with selfies, but comfortable here.
The walls are pink. You shift your stance in the light. You snap a picture.

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b-room, driver’s side/backseat studio

You are here. Your feet cross the threshold of a beat-up room you’ve been in before.

You play and record songs with two of the closest people in your life.

Jo is the very best at snacks. You’d considered naming your band Snacks at one point.

You all want to capture this moment in time, and Jo is going to have a second kid. You know things are going to change a lot.

You have no idea how giant that statement really is.

april 2015

dreamland theater, ypsi

You are here. You’re with these same bandmates, playing at a fest you’ve played every year since you started this band/playing bass — including playing right after you graduated school. Even that one year your guitarist had to go take a breastfeeding break in the car. These babes are some the most solid, most make-it-work women that you know. You are loyal.

As you’re starting off, some idiot tosses a beer can and an insult.

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You plant your feet, square your hips, throw that beer can right back and holler right back at him. This boy’s dumb anger is not yours to carry.

You launch into a set that might well be your last as a band, though none you know it yet. You’re having a long-planned surgery in a month, and life’s taking some twists for everyone, as life does.

september 2015

a farm, your house, the doctor’s office

You are here. Look, you’ve recovered from surgery!

You dance, hopping up and down, you celebrate, you stroll out to the fire, warming your feet by it — fancy shoes aren’t really made for the slight chill of a September night in the country.

You find a tiny bump in the shower, so you visit the doctor (he has braces. it’s disconcerting)

He tells you not to worry.
You worry.
You are right to worry.

april 2016

your backyard

You are here, somewhat to your own surprise.

You are so, so tired, but finishing the second part of a three-part, nine-month marathon. You are mostly napping. Wanting nobody to need anything from you. You do not want to be needed. You need yourself and you need other people but they cannot need you, it takes too much.

You go to the hospital every day. You are so. damn. sick. of the hospital. But grateful it can help you. But also, did I mention tired?

Most days when fatigue hits, it’s heavy as a surging wave in the ocean. Suddenly, you need to lay down. You think of those weighted blankets, and imagine someone just running around throwing them on people. That is how it would look. Instant crumpling.

There is no choice, no coaxing the body with caffeine or breath or movement.

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You are here. You are a shadow, in more ways than one. Your silhouette is different, because, wig. You’re wearing a hat because of the suddenly bright sun and hypersensitivity to light. It kind of makes you look like a shootout villain at high noon in a western.

You lay in a hammock under a blanket, in true Michigan style. The crocuses reach upward, and hyacinths pop.

You are here.

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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)

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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)

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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) 

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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.)

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after the party

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good weekend/thankful ✨

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monday

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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 ever truly 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 movement.

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 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, I think, 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” group. Even with support groups, there’s no place to fit.

****

I hand over the clipboard, the nurse or assistant glances down at 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 creaked 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 weak 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, guilty 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 had over an audience, a room, and a feeling. So alive.

Toward the end of the set, she and the band played My Generation, and she was 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.