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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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! ❤

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 ❤️

A post shared by mariah (@listentothedistance) on

 

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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today I:

today I:

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  • got un-cyborg-ed and stitched up
  • learned how to breathe in tune to lines & diagrams on a weird oculus rift-like headset/eyepiece with a strange bulky snorkel thing in my mouth
  • got several CAT scans
  • realized the rev-up of the CAT scan machine sounds kinda like the DTW airport shuttle
  • got marked up with sharpies and stickers all over
  • got hiccups (2x)
  • got 3 tiny stick-and-poke tattoos
  • wrote some emails
  • chatted about music formats and libraries and records on the radio
  • snuggled with my dog
  • ate a delicious dinner
WHEW.

Heavy Music, Lighter Times

I hadn’t listened to Heavy Cream’s Super Treatment in a minute, and was suddenly in the mood for it during my chemo sesh today.

All the songs are making me wanna drive around with the stereo cranked. So heavy, like these songs should be. Thumbs up to Ty & the band for producing something that sounds nice and thick and heavy but still snotty and defiant.

Jeremy keeps old Bang! mix CDs hanging around, and sometimes one will be in the car. I love how they are little time capsules of the things that he’s/we’ve been listening to or loved at a particular point in time. Since we’ve been together for almost the entire life of The Bang, 14+ years, there’s a lot of time with touch points in that music.

This last week, I was listening to one that happened to include Joan Jett’s version of Shout — kinda the only version of Shout that doesn’t make me feel like I’m at a wedding reception (way to be, Joan). It’s not like, my very favorite song ever or anything, but I like hearing some different energy in the vocals, and I had totally forgotten it existed.

Hearing it was a welcome jolt and also hearing anything related to The Bang was bittersweet as I had more mixed feelings than I’d expected about the fact that last week, the guys moved out of what had been The Bang! Studio for many, many years. The studio was where I celebrated my 30th birthday. It was something that enabled the crew to built giant sets. I spent some happy time there with staple guns, glue, PVC and paint. I stored merch there for the job I had before going back to grad school. It was a place of grand possibilities, and we finally got access to/could afford it after a LOT of hustle and watching J and the crew build sets and paint outside/in a windy carport in terribly cold weather for a few years.

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A lot of stuff happened there. A lot of friends found space to make music and do things there. I sang backup on a song about pizza, even. It had a good run.

I feel like I’ve been in a sleepy, occasionally frustrated bubble zone for the last two months. Having to settle for mostly sleeping and jotting things down in notebooks for later, catching little moments of the way my brain and energy usually work. I am still myself, but I am a version of myself that is so inward-turning and bit-by-bit and unable to sustain extended focus that it’s hard to recognize it. I’ve always really prided myself on my focus and tenacity in all sorts of situations, but sometimes those qualities have to be set aside for a little while.

80% of the time I’m accepting that this is the way it is now, and the other 20%, a gut level reaction, one that can be accepted but not eliminated by resting, meditating, yoga, and other healthy things… that other 20% of the time, I want to scream and run and dance and jump up and down. I want to crank the stereo and drive with the windows down. I want to turn up the volume on my amp and play along with a song just because it’s fun, not ’cause I’m any good. I want to work on projects and most of all make things. I want to have the actual energy to talk to people and really, really listen and make a plan or two I don’t have to hedge because I might need to cancel.

Those things are still a little ways off, but today I got pretty badass news, befitting of spring, that that horizon is much, much closer than I thought. 

I thought I had 3-4 more sessions of chemo and then radiation. Today, in an act that feels like spring mercy (but is really just based on solid oncologist knowledge and the fact that blood cell nadir was reached a few weeks back), my oncologist went through everything and told us this is my SECOND TO LAST chemo session.

I’m ELATED. This doesn’t mean that the next few days post-treatment won’t hurt or be kinda difficult, but it does mean that mentally, I’m more ready for spring and for change.

Weirdly, I feel more allowing of myself to rest knowing that there is a timeline for the tiredness getting less and less. I don’t know what that phenomenon is, but it’s a thing. I’m totally ready to accept that I only have so much hibernation left. And the fact it’s less than I thought catapults me much farther forward. I thought I was just at the halfway point from our conversation two weeks ago (granted, the visit two weeks ago was kinda bonkers because of the power outage/no computers thing), but I can’t even quite describe the type of relief I feel at not only moving along, but being farther along that I thought. Definitely feels like a sort of grace.


 

We could still use a little bit of a hand with meals through at least the early part of radiation. It will still take awhile for me to be able to cook more (though I made a couple meals during my pause from chemo). Everyone has been so, so very generous so far, so no pressure, but if you want to take some weight off Jeremy and I, there are a few more meal-help sign-up days open through early May.

 

I keep thinking/I keep sleeping/I keep on

I keep thinking/I keep sleeping/I keep on

I keep thinking about water. I keep thinking about hair. I keep thinking about relationships and circumstance and dumb luck. I think about eyebrows and how I never really learned a damn thing about makeup and cultures of girlhood and initiation to womanhood. I keep thinking about gender and race and class and access and healthcare and networks and communication. And grace outside of religion, and reciprocity and abundance and how it takes so many different forms.

And then my brain fizzles and sputters and I have no choice but to sleep or do something very, very slow — very, very different from what my brain usually craves.

I have so, SO much that I start thinking about — that I make rough notes about and sketch out in fits and starts here and there, but synthesis? Synthesis is hard right now.

The doctors had tried not to scare me or “prime” me to experience certain side effects, but the heavy fatigue that started to set in after AC chemo treatment #2 was like nothing I’ve ever experienced. They reassure/d me that it was/is “not at all unexpected,” much like the (much more minor) chemo-brain that had crept in since the very first session.

They even reassured me that the depth and heaviness of this tiredness was something that oftentimes doctors — going through their own cancer treatment — did not fully understand until they themselves experienced it. It’s odd when even sleep does not feel restorative. But luckily, there are still moments and even an hour here or there where I feel more like myself, energy-wise. Most days, I still try to walk at least a few miles and/or do gentle yoga at home, because even if I feel crappy at the beginning, at least those things help make me feel a little more fully a part of my body and less like a tired blob. I’m also ALL OVER some basic nutritional things I can do, and acupuncture helps a bit.

A few years ago, in my first year of grad school, I had a car accident that left me with a minor concussion. I remember suddenly realizing I was standing in the middle of the highway, with broken glass all around me, and the ding-ding-ding of the door-ajar alarm tinnily ringing in the background, my tiny car smashed, but having done its protective job amazingly (I’ll probably always buy Subarus now).

I was lucky to be alive, and to be, in the big scheme of things, relatively OK. But the concussion did take a few months to fully heal, and it was scary to have just jumped back in to the massive amount of reading, analyzing, and writing that grad school entails, only to have my brain and ability to focus jostled. I was fortunate enough to have insurance, good doctors, and two instructors in particular who understood that I might need a little extra time and assistance on papers, and I got through.

In fact, once I was on the other side of healing, I used what I learned on the process of “sensory gating” (I became temporarily less able to block out light and sound — sometimes I would wake up suddenly in my bed in the middle of the night, with the hum of the far away highway or hospital SO loud in my ears) to write one of my favorite papers about information overload. I think about that cycle these days, and how in the midst of healing, things felt really hard, but how ultimately, my body did, indeed heal.

Man, was I really, really lucky that I healed well then. Man, am I lucky now to be able to even go through this treatment — to have an illness that has a good research base and treatments that most often have really good end-results.

But in those moments of trying to adjust to a brain or a body working differently or needing far more rest, it’s still a challenge. Not every moment, and not even every day, but it’s a strange identity shift when you’re not able to do or be the things you’ve usually been able to. Especially when, like me, you’ve kinda prided yourself for a long, long time on being someone who gets thing done and makes things happen.

As the AC chemo gets out of my system little by little, my energy will come back a bit. I just did my first Taxol infusion yesterday, and so far, it seems way less mean. I even went to work for 3 1/2 days last week (not much, but the most I’ve been able to do so far without every email turning into a mess of typos – ha!). Then, promptly caught a cold and had to sequester myself again — ha!

BUT, my energy is getting better, little bits at a time. I look forward to having the energy to put my thoughts together more coherently – whether in conversation, work, little songs (SO many lazy little voice recordings to go through) or simply writing things down.

For now, my writing still feels very disjointed to me – whether in notes to friends or here, but I want to keep at it. I want to have this both as a way to check-in and a way to reflect. Also, as a way for people to know that everyone struggles with things, and it’s so very, very human — whether we/you are comfortable talking about it (and there are often very good reasons not to) or not. This being human thing can be wonderful, joyful and amazing, and it can also be really hard. That’s OK. That’s all a part of it. That’s how we learn and can try to understand each other, if we’re lucky.

In the near future:
More about why I’m writing, about water, about all of the gender stuff you just can’t avoid thinking about in the midst of breast cancer treatment, and also, on radio, art and grace…

Until then:
My super-talented partner in crime (go see the originals for his amazing Stooges comic and other work at GIG: through 1/30 at the Art Center (review) if you get a chance to stop in!) has been pretty amazing in the way he’s risen to the challenge of things. I’m super, super lucky.

He made a really honest and wonderfully put-together comic, here (click thru on it to go beyond the lil’ preview image)…

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