Tag: music

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!

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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.

 

 

 

 

 

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.

 

Sunshine, Jams, Good News!

Sunshine, Jams, Good News!

It’s sunny and beautiful in Michigan today, but it also finally got around to getting cold. Might snow tonight, which I’m actually kinda excited for (don’t get annoyed at me!). It is almost Thanksgiving after all!

We got some mostly-good news as a follow-up to last week’s surgery!

Still waiting on some puzzle pieces (mostly genetic information that will influence chance of recurrence/consideration of additional surgery), but here’s the breakdown so far —

The biggest significant thumbs-up is that the surgeon achieved “clear margins,” which basically just means they have proof through pathology that they were able to get the whole tumor out with a small bit of regular tissue around. Awesome.

Although the growth was slightly larger than they initially thought, it has not spread to the surrounding lymph nodes. Hooray! This is a BIG relief! This likely puts me at Stage 2, but stage 2a, rather than 2b. We will double-check this distinction with the Drs in a big ol’ follow-up appointment on Monday.

The type of cancer that I have (we’ve known this since initial biopsy/diagnosis) is called triple-negative (TNBC), and cells can still spread via the bloodstream, so of course it’s important to follow surgery with full chemo and radiation. But, chemo and radiation were in the plan already, we just didn’t know exactly what types of chemo.

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dream hair

Now taking favorite wig-shop recommendations. If I’m gonna lose my hair, I may as well have a sweet Ronettes ‘do or at least Pleasure Seekers-style bangs/long hair for a little bit!

The good news about triple-negative is that although this type used to be one of the scarier breast cancer diagnoses, research on it has come exceptionally far in the last ten years, and it looks like it sometimes actually responds better to chemotherapy than other types. Its lack of extra hormone receptors also helped me feel more OK doing all the fertility-preservation stuff, and it’s especially lucky that I caught it early, as that improves my prognosis greatly!

So, all-in-all, I’m feeling good (with occasional pangs of nervousness, I mean I’m human), about the outlook and the 6-8 months ahead. It will still be a long haul, but after our introduction to the medical oncologist (chemo expert doc) on Monday, we’ll have a better idea of what things will look like ahead.

My friend Tori and I have had a long history of swapping music and mix CDs (even if we haven’t done it as much the last couple years), and she’s always had great taste.

In fact, she was the very person who introduced me to Chandra’s Transportation EP waaay back when, so it seemed especially perfect timing that a few other friends on tour this last week actually got to catch Chandra perform! File that under things I never thought would happen but am totally psyched did/do. Life, man!

So, in honor of today’s sunshine and good news, I’m sharing a mix she made for me to get me through this last month or so. ❤

Positive Vibrations for your Friday!

*Regular Spotify disclaimer — if you hear something you like on here, think about buying the record or an actual download o’ the song. Art and music are important and deserve your support, financial and otherwise!
Sleeping, Healing, Waiting…

but god is always laughing every time you make a plan
so you can never really know
and everybody’s gonna tell you something different anyway
they think they know but they don’t

so
if you’re looking over the edge
where the skyline extends
and you don’t see your friends
they were right behind you…

Most of Thursday through Sunday, I was asleep. The time that I wasn’t, I was in a pretty groggy, zoned-out mode. Dumb stuff on Netflix and silly animal pix/videos (for all who sent them — THANK YOU FOR YOUR SERVICE!) and trashy magazines (J managed to find two different Scientology exposés!) were about the level of my comprehension.

Things happening in the larger world are so sad, at such a deep level, and it’s hard not to let that sneak in even a little bit. So many people have so many struggles, from the individual to the structural to the sudden and violent. It doesn’t necessarily make it easier to know the enormity of that, but it does make struggle and heartache and —perhaps — the choice to let that nudge us towards compassion — seem to be a fundamentally human, shared experience and trait, or at least capability.  I don’t know what else to take from it all right now.

In my tiny bubble that I am lucky enough to have around me, I have been cozied up, and the more I’ve rested, the more my body has responded. My left arm is now working fairly well — leaps and bounds ahead of the “temporary TRex” feeling it had through the weekend. Each time I wake up, things are a little bit better, physically. So, that helps!

Jeremy, obviously, is a champ, and has stepped in to anticipate what I might need. He’s back to VG Kids for a part day today, after some extra Sparky care (he’s fine!) this morning.

I keep getting awesome mail/cards from friends near and far, and each one makes me smile. Gorgeous flowers and treats from pals, super-comforting dinners, and care packages that seriously could win some sort of awards for the wonder and joy they provide! Thank you, people I love!

I am intensely lucky.

It is hard, however — a strange weight — knowing that pathology and lymph node biopsy results are still unknown and hanging out there, later in the week.

They told us we’d find out on Tues/Wed, so I’m figuring that really means Thurs/Fri. What we find out from that as well as genetic testing will matter so much in charting the course ahead.

There will be some sort of chemo no matter what, but whether there are more surgeries ahead, and what chance of recurrence might look like (which is so wild to think about when we’re still just getting a handle on treating the right-now-cancer!) is really TBD.

And I guess all of life is really TBD, each day, it’s just an illusion of control that we often have…but as someone who likes to plan, who has been served well by thinking and planning ahead in my life, it’s hard to embrace the total enormity of the uncontrollability, even if I’ve made myself practice that letting go.