Mid-March Update: Back to Ypsilanti

Mid-March Update: Back to Ypsilanti

It’s only been a week. The blue dye they injected into various spots on my arm & hand is fading, but still there, looking a little sci-fi. Yesterday the doctors checked everything out, removed the weird tubes, and gave me the thumbs-up to return to Michigan for a bit. 

Saturday, I’ll make my way back to Ypsi. For the next couple of weeks, my only job is to rest and have some gentle hangs with folks I adore who want to help me recover. I can totally do that! 

I was so busy running around getting ready for surgery, trying to prepare for difficult emotions, that it hadn’t occurred to me just how deep a sense of relief I might feel afterwards. 

Yesterday, the doctor went through the pathology report with me, and each thing ended up better than I’d hoped: 

  • the tumor was significantly smaller (< 5mm) than they’d anticipated, even from the most recent imaging (the chemo + immunotherapy worked well!)
  • the surgeon achieved clear margins (the problem area was completely removed!), and 
  • NONE of the lymph nodes they removed showed any signs of cancer 

After months of treatment and side effects, this feels like a real milestone. I still have some treatment to do to ensure things don’t come back, but those pathology findings mean that as of last Wednesday, I’m cancer-free! Fuck yes. 

It’s remarkable how much easier it becomes to not sweat bullshit once you’ve had one of your worst fears occur and somehow (great doctors, therapy, friends, family, total chance, grace, friends, dumb luck, oh, and did I mention friends?) come out on the other side. 

For all of that, I am thankful. Resting. Living.

*If you recognize the mural above, you’ll know where to find me!

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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.

 

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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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Take the Ow Out of Now…

Take the Ow Out of Now…

The holidays, overall, were really good. Got to see some folks I really love, got to spend time with them. But the holidays were also right smack still in the midst of this most intense first portion of chemo/treatment, so it meant that:

  1. I was actively losing the last of my hair — goodbye, little buzzcut!
  2. A few of the support/extra programs that would normally be available to someone going through this portion of treatment weren’t really offered ’til mid/late January. I mean, I guess if it’s taken me 30+ years to care at all about how to use an eyebrow pencil, a few weeks without that knowledge (or fullish eyebrows) isn’t exactly a disaster…
  3. Treatment could either be right before Christmas Eve Day or right before New Year’s — I went with before New Year’s and amazingly was able to rally enough to have a good early-evening NYE with some great friends and their kiddos

I am thankful for a new year, though I’ve never really been someone to be all “screw that last year!” on New Year’s or birthdays — the way I’ve always seen it, time just keeps going, and even if it’s fun or useful to mark it off, in the past it’s seemed a bit arbitrary to celebrate Jan 1.

Time and life seem to just involve a lot of different cycles — sometimes you are aware of them and sometimes you aren’t until you are smack dab IN them. I’m aware of a lot of cycles right now. I’m at a good place in this cycle, even if I have a little cold.

Next week I’ll have the last of the “AC” cycles that comprise the first part of my treatment. I’m thankful that our original notes were wrong and that I only need 4 (not 8) of those. I’m not exactly looking forward to it, but some adjustments in medication as well as acupuncture made round #3 more deal-with-able than round #2. They helped take the “ow” out of that now. After 3 weeks to recover from the AC, I’ll be on to the second portion of chemo — twelve weekly sessions of Taxol.

Even when I’m in the midst of a considerable amount of ow, I just need to remember to do one thing at a time — the next moment, breath or step could be better, and eventually, it probably will be. Again, these are cycles, and now that I have a sense of that, it seems more doable to ride each one through.

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photo: detail of a great illustration from the AMAZING catalog for the Walker Art Center's Hippie Modernism exhibition, which will be on view at Cranbrook in June, and at the Berkeley Art Museum/Pacific Film Archive after that