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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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.

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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!

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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.

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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.

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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

 

 

i’m gonna try…

hanging in there.

hey, let’s go 2016, i believe we can do this right/well/ok-at-least.

we might not know how, but we’ll figure it out.

just happened upon a playlist i made some prior muddy March, and it makes me feel like i remember how different spring sunlight can feel, so gonna share it in case you wanna listen and appreciate winter while looking forward to an eventual spring…