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! ❤
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!
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. ❤
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.
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.
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.
My eyelashes are falling out again. My doctor said that that was pretty normal in the year after completing treatment — that she knew one woman whose lashes had fallen out and grown back again FIVE(!) times in the following year. When my eyes get all irritated a few times a day, it’s just a “hey, stop and reflect for a moment” reminder.
Some days it is reassuring and feels triumphant to think about where I was a year ago. Most days I feel thankful, but it’s an exhausted-kind-of-thankful. An “oh my god, I just ran a marathon and you’re telling me I have to keep walking?!” kind. I absolutely adore my job and everyone I work with and all of my friends and all of that, but there’s a part of me that just wishes I could go live on a beach for about a month, and then come back, feeling more ready for the rest of the world and life and weird times that will require energy, resistance, defiant joy and transformative love each day.
How do people do this — come back from the strange semi-there world of cancer and treatment and recovery — if they don’t adore their job, their life, the world and people all around them? It’s hard enough when so many of those factors are so right that you feel like you’ve won the work/friend/community lottery.
Some days the sadness and anger bubbles alongside that thankfulness. One of my guiding reassurances since my teen years has been that thankfulness crowds out a lot of unpleasant emotions. That’s true, but it only seems realistic to recognize that those other things also have a right to exist, to be felt, to be processed over time, to be channeled (oh, oh, I am SO practiced at channeling feelings), and perhaps, eventually to be let go.
That is part of the fundamental work of healing, but for me — someone who has always taken a long time to process things but a short time to check most things off a to-do list, — it’s disconcerting to realize that that healing has a longer timeframe than I had initially thought or that I would wish it would.
Synthesis is still more challenging than it used to be. Energy/fatigue is still a challenge. It takes me at least three times as long to do most things as I think it will. I know it will continue to get better. When I look back, I can see it getting better, but it’s hard to let go of the fantasy that life after treatment bounces back quickly to what used to feel comfortable and normal. I imagined a different timeframe. I needed to believe in a different timeframe in order to meet treatment with the attitude I wanted to have. My stubbornness/tenacity can be both a gift and an additional source of frustration.
I am changed in ways I did not want to be changed. Besides the big things, the scars and the way my body cracks and pops eighteen times when I get up or sit down, my skin is different now. My immune system still has some healing to do too. I can’t usually sleep on my left side without this weird-and-kinda-annoying-but-nonetheless-helpful pillow thing. But U of M has pretty amazing resources, doctors, and occupational/physical therapy folks with an amazing breadth of knowledge to help folks with quality of life issues after treatment. And for that, dang am I thankful.
My neuropathy in my legs continues to heal, slowly but surely, and I’ve gotten help for some other post-treatment issues/challenges. Through the LiveStrong program at the local Y, I can really see advances in my strength, which is heartening — especially on the days I feel frustrated. And most days, walking down steps does not hurt at all anymore, which is a huge positive too. I can walk to or from work a day or two a week, and my doc says that my daily step amount is remarkable considering the amount of neuropathy I started out with. That’s reassuring, but also just makes me laugh at myself, because I know that part of that is just that I am tenacious (stubborn!), and like clearly measurable goals.
The hair on my head is proving sturdier than my eyelashes, and is wonderfully curly and getting healthier and softer. It’s odd that it’s so dark, but I dig the Rogue/skunk stripe at the front. I just had my second haircut, which doesn’t even seem real.
Time is still moving strangely, but slightly less so with each week. Instead of barely making it through a few hours of Tiny Expo post-chemo-sesh, this year I was actually able to be more involved again in the planning and execution, and I saw and hugged and helped and chatted with so many friends. Jeremy even unveiled a few new prints, and my pride in his accomplishment and refocusing make my heart swell.
The biggest thing I notice in these last few months? It’s been slow (like me!) and gradual… My own life has less moments of feeling foreign to me, which is, I think, a lot of what I’m learning real healing is about.
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.
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… ❤
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.
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.