Mixed Emotions Club

Mixed Emotions Club

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.

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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…

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Loving each and every crocus I see reaching up this week… ❤

 

 

 

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.

 

Back to it: Water Main Breaks, Power Outage & All

Earlier this week, I was still so tired,  but it felt like my brain was waking up a little more. I began noticing more and more (not my own!) typos in anything I was reading online. My first thought — “does this mean my blood counts are back up?”

Luckily, I found out late Tuesday that was the case! My white blood cell counts bumped back up after two weeks on-pause from treatment, and were over 100 again, so we could start a new chemo regimen yesterday.

For now, the plan is to switch from a lower dose every week for 12 weeks (only got 2 weeks in on that plan) to a higher dose every two week, with a neulasta shot to give my bone marrow a nudge between sessions. I gave these shots to myself during AC treatment in Dec/Jan anyhow, so I’m used to doing this. There are different potential side-effects, but so far, it’s not terrible.

So, I think yesterday’s chemo session was 7/10 instead of 7/16, but I’ll know more certainly about that next week. I’ve been told not to think of the end-date as set in stone at this point. This entire thing is a constant lesson in not getting ahead of myself.

Yesterday was a record-setting day — from showing up to heading home, it ended up being an eight hour day. WHEW! No wonder both J and I are worn out today!

It was intense and hectic for everyone from the patients to the support staff to the docs yesterday — a water main broke on the top floor of the Cancer Center, and water leaked down, down, down… shorting out almost every single outlet on the floors below except for the “emergency” outlets.

This meant no computers except laptops charged off the emergency power strips, so all of the steps that usually involved scanners and check-in, etc. were on printouts. Even my medical ID bracelet was sharpie-on-plastic DIY-style.

Jeremy’s exact words were “this is like a hospital in a movie!”

You know when you watch a TV show and a hospital is all crazy with bonkers-overflowing waiting rooms and a man is walking around in circles for an hour with the most EXTREME hiccups you’ve ever heard (sorry, mister, everyone totally understands that might just be a part of what you’re dealin’ with), and there’s an older gentleman who REALLY wants to play a game on his phone but doesn’t understand how to turn the sound off, and then the nurses are running all around calling folks’ names over and over because there are just SO many people? Bingo.

Once we got back into the chemo area itself, it was relatively chill, but even one of the nurses there admitted he was kinda waiting for things to turn into a zombie movie or something. If I was a rich woman, I would’ve bought an after-work round at Casey’s for every single person on duty at the CC yesterday.

But the bottom line? Dang do I have admiration from every single staff person who showed so much professionalism. It was pretty amazing, the level of not only grace, but graciousness-under-fire that I saw each step of the way.

On Pause…

On Pause…

The last two weeks I’ve gotten sent home from chemo 

…due to low white blood cell counts. The first week, I tried not to let it phase me — it’s a pretty common thing to have happen. But then yesterday, we got my bloodwork results, and despite no chemo the week before…my counts were even LOWER.

So… that part isn’t as common. But it isn’t totally unheard of. It just means my body metabolizes Taxol very differently (over a longer period) than other people. My doctor has seen it before.

Can I say here that I am really thankful I have a super-smart doc who also has enough background and clinical experience to have seen/navigated something like this before? My Dr. is funny and humble and whip-smart and just very real and human. It’s not often you find all those things together in one doc.

We’ll do some more bloodwork next week and then hopefully restart a different chemo plan.

It’s a little weird to think you have this idea of what the next few months will hold, and then be in limbo to go into something different. But really, aren’t shifts like that just kinda, well… life?  A good reminder to not get/think too far ahead of myself, for sure.

 

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From Natalie Sun’s Texting with Cancer

 

The good news

…is that although my immune function is still pretty low, and I’m still anemic, I’m not on as harsh of lockdown as I had initially put myself on. Still, given that 2/3 times I’ve had “moderately” low WBC counts I have picked up a cold during 1/2 days at work (despite obsessive hand-washing), I will probably still limit my exposure to spaces where the general public is hangin’ — which is kinda a bummer ’cause I find a weird comfort in grocery shopping. And as someone who geeks out about sound and images and media, I know tonight’s Nerd Nite with Ross and Martin is going to be a really fun one (special thanks to Sara and Elyse for holding down the fort on the NN-organizing front).

And I really miss shows. I’ll definitely appreciate being able to go to the next one I’m able to. For now, I’m just taking the time to revisit my records (thankful for that comfort), and though conceptually, reacting to each is an appealing idea, I’m just gonna keep my own rediscovery low-key.

The even better news

is that although it sucks to feel so wiped out, the theory goes that if the chemo is being THIS hard on my own cells, it’s also thoroughly kicking the ass of any sneaky cancer cells still hanging out and hiding anywhere. And that is GREAT, since chemo is really the best tool we have right now.

Sparky Coupon Report

The last week-and-a-bit has felt kinda tough. On top of all of the limbo and house-arrest and unknowns, my best-pup buddy and constant companion Sparky Coupon got a little too wild jumping around and hurt his tiny back.

The big relief is that he’s going to be OK, but he has to spend a lot of time forced to rest in his crate, and the medicine he’s on makes him sleepy. It’s hard to really let him know that even though it sucks right now, he will feel SO much better soon.

So, really, as I type this, I’m thinking — Sparky’s situation is kinda like mine, huh?


 

GIANT thanks to everyone who has sent along a recent note, something to read, or a little pick-me-up present. Again, I continue to be absolutely both humbled and held up by all the expressions of folks’ caring. It’s so amazing that I asked Jeremy yesterday if he was sure he didn’t bribe everyone to be so sweet to me! ❤

Related/Coming Soon:

pic of something amazingly rad from some of my girl-gang…

 

 

 

little bits of text/big feelings

little bits of text/big feelings

Looking through notes on treatment is little overwhelming, but it’s this statement that’s really hardest for me to even think about accepting…

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…though this email subject line a few weeks ago (thanks, Sara!) was definitely the thing that made me feel most-myself in a few months…

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New Tacocat single is pretty perfect for just where I’m at at the moment…

 

<3 hearts <3

Hey! It’s Valentine’s Day!

Whether its romantic or not (and let’s face it, romance can add a lot of messy baggage, though it can be great too) let’s hear it for love.

Just plain ol’ kindness to totally transformative love — all kinds are super important! Hooray for love!

I’m on house arrest at the moment — they sent me home from chemo last Wednesday. So, until my white blood cell count bounces back up, I have to be super careful being around people and chemo is on pause.

My fella Jeremy and his DJ partner Gibs and crew are throwing a big ol’ party down the street. They’ve been throwing almost-monthly parties for 14 (!) years… though this is the year the frequency will be less than monthly… but tonight is a party night and…I wish I were dancing like THIS…

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…or THIS (a few years later at the Blind Pig)…

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…or maybe even just kickin’ it in the bathroom like THIS (back at the Halfass)…

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…tonight, but I’m happy/grateful enough to be chilling with my sweet dog in our very cozy house.

There is SO much I want to make and do and say and to be, but for now, gotta keep it low-key and get my strength back up!

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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