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)…

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.

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!

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.

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…

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:

I was actively losing the last of my hair — goodbye, little buzzcut!
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…
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

Cyborg Day Notes: Norm, TV-B-Gone, more…

Today is pretty good. I’m extraordinarily tired, but pretty good. Yesterday was deal-with-able. Wednesday night was honestly pretty terrible, but that’s over for now.

So, back to today. I’m tired out, but alright, recouping and resting. Since I don’t have too much energy to string things together, but still feel like sharing a little bit of what my experience has been — here are random notes from Cyborg Day, aka port day…

Norm & TV-B-Gone

Sometimes I feel like Norm in this town, but in a good way where it’s not just in one bar. Right when I walked into the bunker-y department of interventional radiology, I hear “Mariah!,” which immediately makes me laugh because who the hell knows me here? But it’s someone I went to high school with. Kinda a comfort to see a familiar face.

The unfortunate flip-side of this encounter is that I didn’t get to actually try out my brand new TV-B-Gone clicker ’cause, I’d be WAY more embarrassed if someone I knew had to fiddle to try to fix the TV. Luckily they were not playing The View. I will show no mercy for turning The View right the fuck off.

However, I did get to catch some truly hideous crafting on the Hallmark Channel. I love making things, and I love enjoying the talents of those far, far craftier than I, but sometimes “DIY” on TV just looks like a Pinterest Board exploded into a bunch of puffy pink scrapbooking stuff at Joann’s. This is what we observed:

^though my friend did notice that maybe the OTHER Mariah C’s ad was good luck

Actually Getting a Port:

Lights:
For both fertility preservation, as well as my lumpectomy, I took notice — then comfort — in the big ceiling lights, which were pink and shiny on the inside, like they were made of some super-scarce scientific-grade abalone shells. I’m sure it’s just plastic and metal, but they looked like lotus petals of abalone, as I drifted off to various degrees.

However, for this procedure, instead of abalone lights, I see 4 giant/heavy/ deep old-tv-style monitors mounted on a rig that swings/adjusts from above. They are so CRT-looking that it almost startles me a little bit. I have not seen a monitor like that outside a lo-fi art project (shout out to Louis!) in a long, long time.

Sounds:
AIR has apparently now become my procedure music. I randomly and quickly picked that Pandora channel a few times ago, and I’ve stuck with it. Mostly, I think, because it’s generally pretty spaced-out and I have ZERO emotion tied to that band or their music. That’s kind of what I want in this type of drugged out haze.

When the nurse/assistant asked “what kind of music do you like?” the question, to me, doesn’t seem quite that simple. It’s more like “what would be somewhat relaxing during this really potentially strange experience that will be happening?” As well as “what music do you NOT want to be tied in the future to this memory of pain or discomfort?”

Then again, I learned during my intial biopsy that it’s better to choose SOMETHING than let the staff pick and…

end up with a lot of commercials (of COURSE my BP is going up, there is a man SHOUTING ABOUT HAMBURGERS while I’ve got this giant needle in my breast!)
End up with some muzak version of FUCKING FIELDS OF GOLD coming on and picturing myself flying into a rage and flipping the damn table. (You didn’t realize Sting incited so much anger in me, huh?)

Shelter:
As I mentioned in a previous post, they gently drape a cloth/sheet above your head so you feel like you are hanging out in a tiny little tent — I imagine this is so that although you can feel things going on over by your collarbone/neck, you aren’t as apt to look down and think “oh god, what are you doing to that delicate area?!.

I think one thing that I liked about the tiny-tent, was the sheer gentleness with which they set it up, talk with you, and then eventually take it off.

It’s a good reminder that there can be room for gentleness in most tasks, and that it can help. Even though you are pretty drugged up, there is a lot of weird pushing and things that are not-super-gentle happening too, so that kindness and gentleness is a nice balance/antidote/thing to focus on.

…and done!

By the time I was wheeled out of the room, I was still druggy (yet wishing for slightly more drugs to dull the creeping ache), but now a cyborg. I realized that I guess I am still kinda talky under sedation.

As one of the nurses, Jane, was wheeling me out, and I said goodbye and thanked the crew, she remarked “You are so friendly! I bet that serves you really well at the library — you must meet all sorts of people,” but all I could really line up in my head to say was “I guess so! I’m just thankful that’s over — you guys did such a good job!” And now I’m cracking up at how insistently I felt I had to fit in a “good job!”

And they did all do a good job, except for some sort of port vs. needle labelling that the recovery nurse (who I’d met before!) straightened out but then had to label on neon tape with sharpie over my big ol’ bandages.

That night, my bud Vito did the honor of shaving my head. I’d say Tuesday night my look reached peak-cancer-y so far, with my new buzzcut and various small tubes (left for chemo the next day) hanging out with bandages and sharpie labels on my chest. I took a picture for my own posterity, but there’s no WAY I’m sharing that one with anyone else.

That’s too much. I’m just trying to be honest here, but I have zero interest in grossing people out intentionally.

It wasn’t very comfortable to sleep, but I was so konked out, it didn’t really even matter. And I was plenty thankful for the port during the Wednesday chemo sesh. I have a feeling as it heals more, I will continue to be thankful for it in the months ahead.

And that is what I do feel right now, besides tired and sore. I’m thankful. So far, so good. Things will be difficult in waves, but then they hopefully will be easier, just like the rest of life.

I just want to do the most I can (and right now, that’s chemo and related support) to get through and enjoy those better times — hopefully being better for way longer rather than for shorter.

I also know too, though, that there are things to learn and experience and understand in the midst of the rougher times, so I am thankful for those things too, even if I don’t always think I want some of those experiences.

You’d think…

…going to a place called a “wig bank” might be depressing, but really…

Nope, wait.

Totally depressing.

Also involved file cabinet drawers.

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.

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!*

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.

All’s Well…

…or as well as things are right now. Had a minor surgical procedure today.

Still groggy, really sore, but everything went really well. I’ve been back home recovering most of this pm with the aid of my dude Jeremy, Sparky the wonderpup, and drop-offs from a few other friends & family (the ones who understand when all I have in me is a bleary “ughhhh” as a momentary hello from the couch).

Last week, I planned on being at work all day tomorrow, but then some very kind coworkers gently pointed out that I might be temporarily INSANE, and from the way I feel at the moment, I am extra thankful for their intervention.

Still planning on being at work Tuesday, though. Have a few loose ends and some Normal Life Stuff™ I wanna fit in before things get entirely bizarre.

SPEAKING OF BIZARRE, Wednesday afternoon/evening, I get RADIOACTIVE DYE injected into MY NIPPLE, which is — as my friend Amy pointed out — a possible super-hero origin story. Then, Thursday is my real-deal surgery, here at U of M’s Cancer Center.

In general life, I don’t really talk that much in detail about my anatomy (maybe in a zine/but not too much on the interwebs), but it also feels like total honesty is best in this situation, for a lot of reasons.

Tip-toeing around certain things can be exhausting, especially when you don’t feel those things should be stigmatized to begin with. But typing about my temporarily radioactivity still stirs an odd feeling that’s both uncomfortable and maybe a little exhilarating?

But really, guys, lbr — we all know about nipples! In fact a LOT of us HAVE THEM!

Ok, ok, despite finally being awake for a few hours in a row, I’m obvs. still kinda loopy — time for more sleep.

G’night, friends.

It Just Happens Sometimes

When I was working on my zine a few weeks ago, I started making a list of “unhelpful things my therapist said,” while I was waiting for – and then after – my diagnosis.

I scratched the list from the zine, partially because I don’t think my therapist meant any ill will, but maybe it’ll appear in a future edition.

One specific thing was talking about her dog having cancer, which — though I do love dogs — just felt odd and not all that comforting. But hey, I am super glad her dog is OK now! Dogs are wonderful and important! And mine is one of my top nurses — I am grateful for him every day…

When people are confronted with something harsh — with you telling them news that is uncomfortable for you both, and possibly startling to them — they try to connect with you on whatever level they can.

That initial impulse is a good one, a human and empathetic one. It’s not one I want to quash or make people question. But sometimes it turns in interesting directions, some less productive and helpful than others.

But still, I think the fact that you’re two people talking about this difficult thing usually trumps any weirdness that might come out of someone’s mouth.

Personally, I’d rather have someone keep talking to me about things than bite their tongue or stay away due to being afraid to say the wrong thing. However, there is a particular line of conversation that I’ve found myself in — whether with my therapist or a colleague — that just doesn’t really get us anyplace too productive.

Here’s one of the things my therapist said immediately after I told her that yes, I had invasive breast cancer:

“But… you eat so healthily — organic stuff and hormone-free dairy and fruit and vegetables!”

Um. Why yes, yes I do, or mostly have. I love an occasional bag of Doritos every couple months (who doesn’t?!), but my diet is heavily plant-based, mid-high in fiber and low in red meat. I was vegetarian for almost half my life.

Though my body was under stress from another unrelated condition this past year, that condition meant I needed to work with a nutritionist, who felt I was already doing really well, despite my limitations. And no doubt, I was eating “clean”-er than ever. According to my BMI, I’m not overweight, I get a healthy/moderate amount of activity, and I’m still under 55.

I haven’t used cosmetics or personal care products with parabens or other possible estrogen analogs for over a decade (um, can I get my money back for that extra cash I spent to do that?). I generally don’t heat or store things in plastic containers, etc. etc. etc. …even those things where the verdict is still out, I’ve erred on the side of being careful. We even had a family test for the BRCA 1 and 2 gene mutations a decade ago, and nada!

If the breast-cancer risk-factor list was a quiz, I would ACE THAT SHIT, or at least 95% of the controllable factors. At least two of the Drs. I’ve seen have said as much (possibly not using the word “shit”). But at the same time, they’ve also said that breast cancer rates are on the rise for younger and younger women who are “doing everything right.”

In my last session, my therapist was kind of set on figuring out that me getting cancer was the result of one-of-two-things (both beyond my control). I don’t know why it was so important to her to try to find “the answer,” but honestly there is just NO way we can know that. And other than preventing recurrence, it’s not even that useful at the moment.

As much as we know now about cancer risk (and I’ll likely learn much more about my specific genetic profile over the next two weeks), risks are still percentages, calculated in aggregate. Lives and bodies are still incredibly messy and unpredictable things. We are not machines.

I think that trying to figure out a “why” is a natural impulse. A few nights when I haven’t been able to sleep, it’s way too easy to fall into the I-know-this-is-illogical-but-what-did-I-do-wrong/to-deserve-this trap. But it IS a trap, for the most part.

We want to figure out the exact why or how because we want the world around us to have some order. We want to think that if we eat or don’t eat this or that or do or don’t do some particular thing, we’ve made ourselves safe.

As much as we know the world is not fair — more brutally unfair for many people much more than for me — there is still a part of us that wants to believe that if we just check all the boxes on the “health” checklist, we are somehow insulated from illness.

But we live in human bodies. Bodies are great at healing, but they are also often the things that break down, make us most vulnerable, that will always, ultimately, force us to face that vulnerability and let go of our stubborn idea that a strong will can overcome everything. Will can do a hell of a lot, but bodies are just bodies, and sometimes things do just happen — despite all our best efforts.

Though we can spend some energy looking for answers and ways to keep this from happening to us or others again, we cannot, ultimately overcome our human-ness, and the vulnerability that comes with a body.

Sometimes, despite all the efforts we make to protect ourselves — things do just happen.

At that point, it’s only in how we respond that we have much control, and that we can choose to use it to reflect on vulnerability, compassion and interconnected-ness. I think that’s the best we can often do. And that’s still important.

Dark Jokes & Radio Medicine

I’m pretty worn out, and very sore. The shots and sheer number of appointments are already getting to me, but I’m trying to keep a sense of humor about it.

Since the waiting-game pre-diagnosis, I’ve just been making terribly dark jokes and mostly only writing them down, because they are possibly only funny to me, but here’s this morning’s:

Screen Shot 2015-11-02 at 11.25.55 AM — #nihilistjokes

HA! You have to admit, it’s at least a little funny!

Anyway, after that, I had a bad blood draw and a pretty overall bummer (not bad news, just things not going smoothly — MONDAYS, amirite?) appointment, so I got in my car feeling pretty drained.

But then I turned on WCBN, and this was playing…

…and so I rolled the windows down, cranked the volume up, and cried/laughed for a second because it’s gorgeous outside.

And then a few songs later, this…

…and I just marveled at how many times CBN has been an antidote, an extra nudge, or good medicine even when I didn’t know that’s what I needed.

Radio, man. Music. CBN’s a special thing.

So now it’s time to drink some tea, take a shower, and get back to work.

what's up with mariah

Tag: cancer

I keep thinking/I keep sleeping/I keep on