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.

 

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.

 

IMG_0239

 

 

 

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 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.

 


 

 

 

 

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.

 

reallife
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…

 

 

 

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)…

preview1

 

 

Dancing Queen, A Chemo Milestone & Examining the Terrain

Dancing Queen, A Chemo Milestone & Examining the Terrain

There’s nothing quite like the disconnect of listening to Dancing Queen on the office speakers while a nurse pokes a needle into your chest. Yet that’s how the morning began, and so between that, and the nurse asking the guy next to me with the Duck Dynasty/ZZ Top beard “how do you get the ladies to KISS you through that thing?” I was laughing to myself pretty hard by the time yesterday really got started.

Screen Shot 2016-01-14 at 5.49.20 AM.png

Yesterday felt momentous — it was my last (4/4) dose of the two harsher chemo medicines, and now that I’ve made it through the night with no terribleness (also, hello, 5am! thanks, steroids!) beyond aches, I feel… kinda accomplished!

I’ve finished a chapter of treatment, one bit of the long haul that will take me through until May/June, and it feels really good. I’ll have two weeks for my body to heal a little extra before I begin a different type of chemo weekly for 12 weeks.

What We Can Know/ What We Can’t

It’s entirely fucked up knowing that I — we —  could do everything “right” and it could still end up that I’m not around in 5 years, 10 years. Don’t get me wrong, I’m hoping, I’m trying, I really really want to make that happen, but it also helps me be less afraid to be realistic. I can reassure myself without flat-out lying to myself or trying to push the what-ifs down so far that they feel uglier and uglier.

Because, also, do any of us really know if we’ll be around in one year, in five, in ten? We hope so, we plan for it, we dream about it and we are grateful for it, but nothing’s guaranteed. And every little bit of the way, I am and will continue to be thankful to be present, to be me — from the times I have to hibernate and recover to the times I have energy to make and do stuff to the times I can dance and listen and hug and laugh all night. And I look forward to more of those energetic times again, ahead!

il_570xN.377675665_r8py

Why Am I Doing This: Chemo?

Aside from a few odd interactions (yes, I love ginger, but I’ve been drinking it on the reg for 10 years already and I’m not gonna substitute that for chemo, thankyouthough), I’ve been lucky that I haven’t gotten too many judge-y questions about why I chose the chemo route. Even (especially!) the other women who I’ve talked to who’ve gone through treatment have realized that each case is so very different (esp. with all Drs. know now), that each course of treatment will be really different.

Still, I feel kinda compelled to explain, sometimes — for educational/informational reasons, rather than defensive ones — just why choosing to go through chemo is an option I’m comfortable with. Especially because these days, it’s not a given in all cancer treatment. The most basic reason is that with everything we know, chemo is the very best tool (beyond surgery) that we have for my treatment. If we just left things after surgery, I’d have a 30% possibility of recurrence within 3-5 years, even though we caught things early.

Since the type of cancer I have doesn’t respond to longer-acting treatments like herceptin or hormonal medications like tamoxifen, chemo is the best bet after surgery. In fact, it cuts that risk in half, down to about 15%. Radiation after that will lower my risk a few extra points. Still, all of these are aggregate risks, so each individual case is different —obviously, I’m hoping my individual chance of recurrence will end up a big fat zero.

004_copysm

Other Changes

I want to be clear — saying that we can’t really pinpoint one specific reason I got sick isn’t the same as saying I’m not doing anything to (as David Servan-Schreiber puts it) “examine the terrain.” But I examine my terrain a lot anyway (hopefully in a reflective rather than self-obsessed way), so though I’m making some changes to diet and lifestyle, etc., 75% of the things suggested in the books and by the Drs to lower risk are things I’ve already been doing for quite a long while, just as personal preference or to try to be healthy in general. And who knows, maybe Uncle Joe and the researchers his efforts will support will even further accelerate research to help tons of people, too!

So, I’ll do all I can to protect and nurture my health while still being human, and life will bring me what it will bring me — much of it very, very, startlingly good, and though there will be days I may be sad or seriously pissed off or frustrated, I also know I have a heightened sense of gratitude to be able to live it and share it, the good and the bad and the things that are both/all tangled up together.

Up soon… “Why I’m Doing This: Writing About All This Crap Edition”

’til then — among the many amazing thoughtful gifts and notes and creations I’ve received, this song my good friend Dustin made is one of my very favorites — and good for listening to at 5am…

Take the Ow Out of Now…

Take the Ow Out of Now…

The holidays, overall, were really good. Got to see some folks I really love, got to spend time with them. But the holidays were also right smack still in the midst of this most intense first portion of chemo/treatment, so it meant that:

  1. I was actively losing the last of my hair — goodbye, little buzzcut!
  2. A few of the support/extra programs that would normally be available to someone going through this portion of treatment weren’t really offered ’til mid/late January. I mean, I guess if it’s taken me 30+ years to care at all about how to use an eyebrow pencil, a few weeks without that knowledge (or fullish eyebrows) isn’t exactly a disaster…
  3. Treatment could either be right before Christmas Eve Day or right before New Year’s — I went with before New Year’s and amazingly was able to rally enough to have a good early-evening NYE with some great friends and their kiddos

I am thankful for a new year, though I’ve never really been someone to be all “screw that last year!” on New Year’s or birthdays — the way I’ve always seen it, time just keeps going, and even if it’s fun or useful to mark it off, in the past it’s seemed a bit arbitrary to celebrate Jan 1.

Time and life seem to just involve a lot of different cycles — sometimes you are aware of them and sometimes you aren’t until you are smack dab IN them. I’m aware of a lot of cycles right now. I’m at a good place in this cycle, even if I have a little cold.

Next week I’ll have the last of the “AC” cycles that comprise the first part of my treatment. I’m thankful that our original notes were wrong and that I only need 4 (not 8) of those. I’m not exactly looking forward to it, but some adjustments in medication as well as acupuncture made round #3 more deal-with-able than round #2. They helped take the “ow” out of that now. After 3 weeks to recover from the AC, I’ll be on to the second portion of chemo — twelve weekly sessions of Taxol.

Even when I’m in the midst of a considerable amount of ow, I just need to remember to do one thing at a time — the next moment, breath or step could be better, and eventually, it probably will be. Again, these are cycles, and now that I have a sense of that, it seems more doable to ride each one through.

—–

photo: detail of a great illustration from the AMAZING catalog for the Walker Art Center's Hippie Modernism exhibition, which will be on view at Cranbrook in June, and at the Berkeley Art Museum/Pacific Film Archive after that