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!
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! ❤
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!
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.
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!
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. ❤
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.
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.
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.
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.
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.
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.
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)
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.
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.
Yesterday was my very last chemo session (!). I hope hope hope it is my last ever. But harsh as it is/was, I am glad it’s a treatment that exists, and a series of types of treatments that are constantly improving through research. Because even if it is my own last-ever (crossing my fingers for the next three years!), many many more people will continue to need it and be helped by it. People all around us that we love.
I am still kinda in a weird emotional limbo about it. I’m relieved (especially because the double-dose regimen change shortened the total time by so much), but as I get ready to give myself my last bone-marrow-boosting-shot, I’m still not really ready to feel celebratory as much as relieved.
AMAZING custom jacket (my name is even embroidered on the front!) designed by one of my favorite illustrators, Tuesday Bassen, that some incredibly rad girl-gang pals got for me a couple of chemo sessions ago (thus the tree – it’s put away now, I swear!) It encompasses my heart and gut’s feelings these days, and I’ve finally gotten to wear it on a few sunny walks w/Sparky this week!
Although I’m gonna get to see some much-loved ladies over the next couple days, so that may make me feel more celebratory. Yesterday and today, the only thing I have an incredibly strong urge to do is to go sit quietly by the river. Once it stops raining, find me somewhere along the Huron. I used to have this old red t-shirt that said “always a river,” and I wish I still had it.
For now, I am simply exhaling and feeling a little bit of extra peace.
Yesterday, while waiting for treatment, I went to visit my favorite piece of artwork in the cancer center — a print by the great Ann Mikolowski. It’s a print that I’ve written about privately, but am not ready to share until it feels less raw — a print that has been what I return to, my refrain, throughout the last four months. I think a lot about the Great Lakes and the ocean and waves. Which, being a long-ago English major, could simply just be the theme of “transformation” sneaking its way in somehow. I don’t know.
I’ll get all the fun side effects this week, but I am already relishing that those may be close to over. After that, I’ll get a few weeks of space to recover from chemo, starting radiation mid-April, going through June every weekday. Still a bit heavy-duty, but not as systemic, thankfully, as chemo.
Last night, Jeremy was watching videos, and this one came on. One of my favorite Joy Division songs, and yeah, I admit it, it made me cry — but with hope and with much, much feeling for the whole wide world and how connected it all is, and so very many other things that I can’t even process into words yet. Be kind to each other, friends. Your kindness to me means something every single day.
I have been thinking a lot about why I have harkened back quite a few times to earlier years — to being 18-23 or so — but not even in an overtly nostalgic way. I have some ideas. I’m writing about it to try to figure it out, but in that revisiting (and in the sorting-through-old-stuff that only being house-bound can spark!) I came across a rather emo poem I wrote when I was 19/20. I mean, it’s cheesy, but not bad for a 19 year old! It seemed appropriate, like maybe I was writing it to future-me…
Loving each and every crocus I see reaching up this week… ❤
what's up with mariah 
