thursday was injection day.
(today is wednesday; i've lost an entire week.)

i didn't feel good about my last blog post after publishing it.  it felt too raw, too ugly, too early in this blog's existence to be revealing such thoughts.  that was tuesday evening.
but later in the night after I'd fallen asleep, i got a message, a long one, one confiding in how my raw, ugly words made them feel, and that made them uncomfortable, and they agreed with me that that was a good thing.  please don't stop writing, they asked, unless of course, you want to.
i don't want to, i ensured them.

in the morning, i got another message, another long one, of their medical trauma by proxy.  caregiver trauma.  it broke my heart a thousand times over, the parallels we shared.  i hated it.  we hated it so much together.
(one day, i will talk of my husband's caregiver trauma.  when the time arises.  with his allowance, of course.)

and then, a few days after injection day, Amanda Fucking Palmer, a goddess whom I adore and aspire to emanate in my own way, fucking complimented the blog, this blog, my blog.  the post i felt ugly about, the one i felt was too raw and too much, that is the one she started with and she likes my writing and -- 

i'm fangirling 110% here, but I have loved AFP since i was fourteen years old; she helped form me as a weird, thoughtful, challenging, creative teen into adulthood.  I fell away for several years, just as life draws you to different paths, but I found myself immersed back in her wildly amazing world about a year ago now, and she has only continued to pave the way of all the things I love and take pride in and fuck she's just amazing.  Check her work out, or if you are a Patron of mine, you will soon be getting some exclusive posts with more details about her work and how formative it is, my recommendations, etc etc, through my Patron-only newsletter, Conscious Consumption.

so... i didn't feel good about the post.  but i feel validated.  and that's better.  because sometimes doing the good, or best, or right thing, feels shitty.
(that isn't to say that if you're feeling shitty, you're on the right path.  lol.  you can feel shitty because you're fucking your shit up too.  trust.)
but, you can be doing the right thing, the best thing for yourself, and feel sadly about it.  or remorse.  or ugliness.  it can feel bad and still be what is in your best interest.
trying to make things okay and feel good all the time is more of the toxic positivity bullshit i am done with.  and you should be done with it, too.

thursday was injection day.
and friday, i slept.  aaaaaall damn day.
then saturday I went too hard; it was a really good day,
but sunday made sure to punish me as a result.  and I slept.
and i tried to work on this monday, and I don't know where the days went.

this is what injection days do.
i am fortunate to have friends who i can be honest with on my worst days.  who are honest with me about their hurts and fears in return, when the times arise.
and so i am honest with them. 

how are you doing on spoons?
not good.  the night before injection is spent crying that i dont want to do this anymore.  

"it's just a little poonjie-poonjie in your bootie!"  gage had tried to make light of the situation.  it's how we process trauma, I wrote before, we make jokes.
and usually, jokes work.
but sometimes, they don't, and I had wailed back "but it's not just that!"
and he whispered softly "i know,"
as i cried.

injection day, I had planned on leaving right after I saw Cake off to the bus, but that didn't happen.  I had planned on leaving early enough to stop and get my favorite overpriced mixed coffeedrink, and then maybe have time enough to get my labs drawn, then go to oncology, then pop upstairs for my infusion.  Which as I type this out, is laughable by itself, I couldn't have done the labs beforehand, but I digress.
my oncology appointment was at 9:00am.
​I called when I left at 8:50am letting them know I'd be fifteen or twenty minutes late.

but that's why drawbridges exist, i think; to add insult to injury?  it's my conclusion when I arrive at 9:30, puffy and out of breath.

but my nurse is lovely and we talk about movies, she recommends titles (emphasizes the importance that I see Crazy Rich Asians; Last Christmas which includes two cast members from CRA; Gifted​, just because we like movies and it's good).

i always feel out of place at the AIC; not old enough, not sickly looking enough.  But I am here.  and so is she.  She leaves shortly after I arrive, but i am excited and awkward enough to scribble my name, blog, and phone number with a little note to her before she leaves.  She texts me back.  we banter and joke lightly about our shitty ass bodies and their betrayal.  i adore her.  she is 28. 
i haven't answered her in a few days.  shit.

i ghost people often.  it's not intentional; which i think technically means it's not ghosting.
i'm low on spoons.  and i want to answer fully, so i wait until i have more spoons.
but I also have ADHD.  like.  .... y'all i cannot wait to start talking to you about ADHD.
so i forget.  and when I have more spoons, I occupy myself with all the million things I need to get done, all the things that have also been piling up.
and then it is not until i have depleted the spoon stash and snuck one from tomorrow that I remember all my texts and messages
and i scroll them and realize they all require,
they all deserve
spoons.

so i rest.  and it repeats.

the blog feels much the same.  i am leaving in seven minutes to take Cake to swim lessons.  I am tired.  I am overflowing with things I want to share, and write about.  I am terrified of overwhelming you with posts.  I am overwhelmed by my thoughts.  They're good though, like, there's good stuff in this head.
Cake keeps interrupting me.  I want to cry and scream.  I finish typing my sentence, take a breath while murmuring "just a second" instead.  Answer her question.  
She's already back.

.... when I am back tonight,  I will write.

my oncologist wishing me luck in finding a better primary care physician
calling a family member out on their toxic behavior until they cried so hard they threw up
the pit of snakes
the fact that being terminally ill does not qualify me for social security/disability/financial aid, but being terminally ill also makes it impossible for me to work.
and the underlying societal issue that keeping cancer patients alive is not a lucrative business model
trying really hard not to scream in your kids' face when you are definitely a screamer and a crier and that does not make it okay for you to do those things to a child

that's just.. this week.  i need to write more.
do you guys... want to hear more?

hit me up.  drop a comment below.  thank you, I love you.

>>> if you are enjoying your time here, learning from what you read, and want to support me, become a Patron!  Plus, get exclusive newsletters and even mailbox goodies for pledging your support :) ​

Early in the interview, Amanda is asked about the idea of hope, then and how it may have changed in the now.  She speaks of her fears that even though, while she was in prison, she knew her family and friends back home were supporting her, their worlds were (are?) so catastrophically different.  Her mother spoke to her during her incarceration about hope for the future, and it's not that she'd lost hope, but she had to also set realistic expectations. 
We can't thrive in a land providing us only with hopes and dreams of the future.  That doesn't help in the now. 
Amanda speaks of how yes, she knew her innocence, hoped justice would be served and she would be freed, but what if not?   The trust in the judicial system waning in the face of her wrongful conviction, what if she had to stay in prison for twenty-six years?  She served four before "it was all over," but trauma is never over.  we simply turn to the next chapter.  the pages behind us are still there.  we can recall significant passages, flip back to the memories and relive them.

i understand, in a different but same way,
because this fleshsack is a prison.
not the kind with bars, and a shitty cot for a bed, with guards screaming in your face because you are crying because you miss your mom, not that kind of prison.

i have been told to be hopeful.  i have been told that we will all get through this.
who the fuck is we?

at least it's not xyz.  at least you're still alive.  at least the drains were eventually removed.  at least you can eat now, even if it's limited and painful.  at least your relearned how to walk.  (at least I rented the wheelchair until my insurance had purchased it and i got to keep the fucker, since I still need it sometimes, but I digress).  

or, best,  at least it's the good cancer.
the good cancer!!
i want to scream.
there are "good" and "bad" cancers. 
you know, ones that respond well to treatment or are slow-moving,
as opposed to one that moves ferociously and quickly.
"if you have to have cancer, this is the best one you could have picked."
.... fuckery.  i didn't pick anything.

"neuroendocrine cancer is rare and progressive.  it's persistent and will always come back.  but the good news is, it responds well to treatment and moves slow!  but yours has already metastasized all over your body, it's stage iv, so yeah, there's no curing this or fixing it."
a shit sandwich on a silver platter.

what about the time they told me that my cancer had been successfully removed and somebody, somebody, put the notion into my head that I was cancer-free after my Whipple Procedure?  I had a facebook memories thing come up last week, on what would have been Thanksgiving or the following day, stating i was thankful to be cancer free.  who. fucking. lied. to me.
because they told me they had removed all the malignant masses that they had known about. Known about.  They had also found additional malignant tumors, ones they hadn't known were there.

so then, if they found more than what they were looking for, why in the fuck would they think they got it all?
and further, if it is stage iv and removing it doesn't actually remove it, because it's just there or whatever, waiting, creeping, why in the fuck would you tell someone they are cancer free?

or the first time I arrived at Johns Hopkins University for "specialized continuance of care" a year and a month post-Whipple, to be told by a surgical oncologist whose specialty is neuroendocrine tumors that in his professional opinion, my Whipple Procedure was unnecessarily invasive and didn't really... do... anything.  That the correct course of action was the injection treatment I am now on, because of the persistence of neuroendocrine tumors/cancer, they'll just keep cropping back up and you can't just keep cutting a person open to remove them, scar tissue build-up and stuff.
like amanda knox, i too have floundering faith in the system that was supposed to protect me.
... the system.  not the individuals. 
i am sad.  i don't harbor any ill feelings against my surgeon who performed my Whipple. 
honestly, i love him.  that makes it harder.
i'm sad.
i was crushed;
​now, two years after that news i am just sad.

tell me how to be hopeful.

yes, i can and do hope that the treatments work and make plans, but the thing is, there isn't "when this is over," not til we're dead in the ground.  I wrote the other day on Patreon, that life is cumulative. You don't get to come out of prison, or walk away from shaking death's hand, and just resume life as it was.  There isn't an over.  There is processing and wading through it.

there are scans every few months. 
"for what?" people ask, if I mention these.
"to see if i light up like a christmas tree." and I do. 
little radioactive blips that show where the cancer still is and will continue to be.
little radioactive cancer patient, lit like a christmas tree and not in the fun way.
the blips don't glow any larger, which means the treatment is working.
the blips also don't glow any smaller, which means the treatment isn't working as well as I'd hoped it would so even though the PET scan results are "good" and show "effective treatment," i am not good.  tell me about how this is one of the good cancers.

tell me about how to be hopeful.  
tell me how to take this information and be hopeful.

you can't.
i'm sorry, i'm not angry at you, reader.
I'm just angry.  and hurt.  and alone.

hope can feel dangerous.  a trap you lie for yourself.
Amanda compares it to a light at the end of the tunnel, but it's too bright, so her eyes are squeezed tight to keep herself from being blinded, and honestly that's a much healthier way of viewing it.
​
it's hard to feel hopeful when you're in the hospital parking garage and you hang up the handicap placard that makes you feel like an imposter.  you don't look old enough, you don't look sick enough, and yet here you are, already fifteen minutes late and yet you can't get out of your car because fuck.  just being at the hospital is enough to set me into tears.  i go every four weeks for treatment.

I go back to 2014's pictures, but they do not reveal to me our thanksgiving plans that year.  We spent the week before with Gage's sister, and the Christmas in our small rented condo, having just moved in two weeks prior my parents came down. ​

​I can still hear my dad's voice announcing triumphantly in the Target aisle, "First stuffy from Papa!" as he waved the red octopus in the air, legs flailing wildly.  It is his gruff voice, but it is also forced, warbles on a higher note.  One of his vocal chords is paralyzed.  He dubbed the octopus Octavian. 
​To this day, Cake brings me  Octavian when I am crying and missing my dad.  Or just, when I am crying, and she feels I could use my dad's presence.  Without fail, the arrival of the red octopus stuffy and Cake's sweet little "Papa?" offering will elicit a happy, strangled-sounding cry from me, with love and sadness, gratefulness and anguish.  He has spent nights at the hospital with me, nights on the couch, has appeared in my office at this desk that I am typing at.

later, in the evening, I stood up and bumped into  our kitchen table, letting out a weird yelp.  Gage quickly calls out if I am okay, to which I respond yes, the noise was more out of surprise than anything.

"more surprised than when you were STUCK IN A DITCH?" comes the fiery crack of a seven-year-old who is really learning the fine art of burning someone.

from the living room, Gage's howl of delight.  "Jesus Christ!" he cackles, "I can't wait to tell people at work how good she got you."

Cake is laughing, Gage is laughing, I am laughing, doubled back down on the floor where I had been trying to get up from.

"no," i admit, "nothing was nearly as surprising as getting stuck in a ditch today."

I've certainly hydroplaned before.  I lived in Florida for five years, lol.  And that's probably, actually, why we made it out completely fine and unscathed.  My friends all snapped back omg, how terrifying!  things of that nature, but honestly, it didnt occur to me how very terrifying that it was until after we'd stopped, I switched into park, cautiously took my foot off the break, and had turned back to look at Cake.  It was then, when we made eye contact,  that she let out a terrible, strangled sort of wail, and tears plummeted down her cheeks, and it began to dawn on me how very scary the situation must have been.  
​
Even still, in the moment, I reached back and squeezed her hand with a genuine, easy smile and calmly told her, "hey babygirl, we're okay!  it's fine, we're absolutely fine!"  Still not really registering for me.  (She is terrorized, and I am smiling.)

Then I turned around and simply paused our audiobook, which had been droning on while had been I staring blankly ahead thinking, huh, that was bad.  now what? and Cake had been sitting in silent shock.  I must have stared a little more then, I think; I have very vivid memories of the patch of grass in front of me.

"Mama."  Her voice brings me back, and I look up.

Passersby are pulling over on the shoulder lane, trudging down the steep ditch, their shoes sticking in mud and clothes soaking in the rain to be sure that I was okay, was I conscious, am I alone, is the baby okay?  do you need me to stay, have you called the police yet, can I call someone for you?

Overwhelmed with love and concern from absolute strangers.  Some had seen it happen, others saw my car on the side and stopped out of concern after the fact.   Kind, wonderful humans, stopping in absolutely miserable weather, honestly putting themselves at risk by slowing down to stop on such a steep curve, on a busy exit ramp, to check on me, to help me in any way they can.  They can't of course, not in any way that occurs to me, but I thank them all graciously, and I hope they know how much I cherish every single one of them, so deeply in my heart.  I want to hug them all, squeeze their hands and let them know it made my eyes well up in gratitude.

I call my husband, calmly telling the person who picks up, "could you let him know it's urgent?  thanks!"  that same blithe smile in my voice.  this should be a lot more upsetting than it is. 
I explain the situation ("hey, we're fine, but... um, i'm stuck?? in a ditch??"), and he is on his way.  He has a trailer hitch on that back of his truck, maybe he can pull me out.  Don't call a tow truck yet, okay? 

Sure.  I dunno the protocol for getting your ass out of a ditch.

Rather quickly among all of this, a VDOT employee pulls along the exit, cones off the ramp, comes over and lets me know the police are on their way, and am I okay, do I need assistance or to have a ride called for me?  No thanks, my husband's gonna be here in like twenty minutes.  The tow truck is coming and will get me out as soon as he gets here, usually they just allow you to pay and you're on your way if the officer okays it.  Oh okay!  My husband was going to try to get me out first,  is that okay?  Sure, if he gets here before the tow truck, we've already got him on the way, he works with the police and he's their guy, and we've got the road blocked off so we just gotta get you out as quickly as possible, et cetera, et cetera; my head bobs along cheerily in agreement.  That all makes sense, sure!

I ask him how he got here?  I didn't call anyone and was planning we'd figure things out if Gage can't get me out.  He explains that there are cameras everywhere so if there's an accident, someone will see, but he happened to actually see me spin off the road so he pulled around to help.  I am delighted with my new nugget of information.  I love asking people about how their jobs work, and thank him for helping me, for chatting with me, for taking care of us.

Cake wants out of her car seat and to be with me, but also does not want to actually move.  She is terrified, shrieking and swatting when I put out my hand to help.  I end up unbuckling myself, straining upwards, unbuckling her and then pulling her into my arms, over the center console, into my lap.  Soon, she hops into the seat next to me, and we continue listening to Neil Gaiman's Coraline.  I rewind a bunch, unsure of where we were when everything happened.  I've just finished listening to the audiobook myself, making sure it's something she could listen to without getting too scared, and all the words are too familiar. 
She complains about having heard this part already, and I squeeze my eyes shut and groan, shaking my head, shaking the thoughts into place. 
I fix it. 
She is content and listens, entrapped in Coraline's world instead of our own weird situation.  Good.

At some point the police officer arrives.  Cake looks stricken.
"Can you tell him why I'm out of my seat?!" she hisses, concerned.  "Tell him I was IN MY SEAT but I moved here?!"
I giggle.  I love her so much.  I reassure her she won't be arrested for needing to be comforted.

I  also call her school while we wait.  "Hey, I'm calling about my child's late entrance... well, no, I guess absence from school today.  No, no she's not sick, she had a routine doctor's appointment this morning and then I . . . crashed our car . . . oh but we're completely fine we're okay!  I just, yeah, I don't think we're going to school after this."  The woman is kind and understanding and we talk about the rain puddling up on the roads for a bit before hanging up.

​Eventually, my car is retrieved on a flat-bed.  I take Cake home in Gage's truck, and he brings my SUV home.  We relax for a bit; they watch TV, I work on my website.  We leave early for swim lessons, stopping at the local Girl Scouts store, picking up her Daisy Scout uniform pieces.  She is delighted, and picks out cute Daisy socks as well; Gage obliges her, and she is ecstatic.  We grab drive-thru dinner, and then she is in swim, excelling, a mermaid in her zone.

The two have made jokes about the ditch all day.  They don't hurt my feelings; maybe once, they would have.  It would have felt like an attack on my parenting, or a critique of my driving.  Really, it's just how our family processes.  We make lots of weird fucking jokes about our trauma; about cancer, about mental health, about careening over the interstate and into a ditch.  She's learning from the best, really.

Before she heads to bed, I squeeze her tight.  "How are you feeling?"  I ask her.
"Good."
"Your body doesn't hurt?"
"Nope."
"How about your head, how is your head feeling?"
"Fine."
"No, I mean, your heart, your mind, how are you doing?"
She thinks on this for a little bit, understanding now what I am asking her.
"You keep saying it was slow, but it wasn't slow, it was really fast!!"  She begins crying again, and I scoop her in tighter.  
Gage and I explain to her what that means; she's certainly heard us relaying the story, my recalling the details.  That just because a car is going slow for a car, that it is still going incredibly fast for her tiny body; a car driving ten miles an hour is nothing, but a human being running that fast is extreme.  How seeing the ground come up at us, seeing our car dipping at such a sharp angle, is not anything she has ever seen before and I hope she never does again, and that is an alarming thing to process, too.  We explain how it could have been so, so much horrifically worse--if I had pulled the steering wheel too hard in response, we could have spun out; had I not steered enough: fishtailed back into traffic, we could have hit other cars then.  Cake gasps in realization.  We talk about how fortunate we are that there is negligible surface damage to my car, and how if we had been going just slightly faster, or had hit a guard rail just beyond or before the area we went down, there could have been much more damage, or we could have flipped.   It was bad, and scary.  Yes.  Those scary feelings are okay.  But also remember, you are safe.  We talk about car seat safety and testing., how no matter the situation, that cars eat would have hugged around her and kept her little body safe from harm.
This all helps, it seems.  I hope.  She says it does, but in her uncertain way that reminds me so much of myself: overthinking, still mulling it all over, unable to put the feelings into words at such a small age.

Really, overall, I'm really quite proud myself in the of the situation.  It sucks, for sure, lol.  But also . . . shrug.  I did the best with the situation at hand.  I felt the car rising above the asphalt, levitating on the water.  I knew we were leaving the road before it happened, knew my car was spiraling much too tightly for the turn and there was no correcting it; the safest place for everyone was for me to carefully guide the SUV into the grass.  I didn't panic, or scream, or cry.  In the aftermath, I didn't dismiss my child's very valid fear to make myself more comfortable, nor did I let her feed into my own worries and exacerbate her fears (...to make myself more comfortable).  
​
Part of me figures it's because I've just been dealt so much extraneous bullshit, I don't have the energy to get hung up on how scary it was or how bad it could have been; I mostly come away like, well, that sucked but it wasn't the worst thing that has ever happened to me, huh.  Lame way to spend the morning.
And I don't think that's necessarily a bad thing, just an observation.  

I wake up already feeling sicker than usual, and this is disappointing. I frown into my pillow. Why is this? My injection symptoms have more or less faded, the back pain hadn’t been so achy the last few days. And then I remember, and I sigh.
That’s right folx, I’m talking about menstruating today. Buckle in.
Eh, I’m kidding. I mean, yes, that’s what is going on this morning, but that’s not what I’m writing about at large. Let me clarify a bit more.
The odds are never in my favor. I am not saying this to complain, although let me be the first to admit I do complain, often and loudly. But it’s just, true.
May I present to you, the maths:

• Every four (4) weeks I receive my monthly injections. The initial day I’m fine, but the following three or four I am miserable. Exacerbated nausea & vomiting, Body aches, particularly my lower back/top of my butt, depending on where my nurse felt was the “right” section that day. Because it’s a trial drug and a really uncommon applicator and I dont even know man, it’s weird, like everything is with me. Irritability, exhaustion/fatigue, incoherence/fogginess, loss of appetite. Feeling really shitty, generally. Guaranteed three to four days of the month.
• I was genetically gifted with a uterus. Thanks, I hate it. I have an irregular cycle, and I’m not sure if it’s from my birth control I use (nexplanon, do love, highly recommend) or stress all the time or my MENS1 or the whipple— I very much think a combination, but I think it’s generally about every six (6) weeks, and that’s about what it’s been this time, so we’ll say that. Thankfully, mostly in part to the nexplanon again, it’s fairly light and short, so we’ll call this four to five days. But like man, light doesn’t mean pain free, okay? The first time I ever threw up from period pains was the week before my very first menstruation, in middle school, we thought I had a stomach flu at the time. And then it wasn’t for another fifteen years or so, the whipple fucking sent my body into every sort of spiral, and now each new cycle feels like the very embodiment of what’s happening: I can feel my insides tearing themselves apart, an angry cartoon uterus with talons for nails is shrieking about how she didn’t get her baby and she decorated the nursery for nothing, so now she’s stripping out the wallpaper. It’s me, I am the wallpaper. And the nursery. Honestly how this bitch thinks we are a suitable host for another human being is beyond me.
• Chronic pain, nausea, fatigue daily. (If you haven’t heard of or recently read the initial story of the Spoon Theory, I encourage you to take a pause and do so now! It is beautifully written, and that link should open in a new tab for you.) I already have a low starting amount, and being unwell for so many days back to back, unable to eat but equally unable to revive my body without nutrition, I pull from tomorrow’s spoons, and the next day’s, and the next, and soon it is a game of just playing catch up, a hope that there is a breaking even to the surface before my lungs give out.
• The extra spoons required of going to appointments, having scans done with contrast drinks that will make me ill and shit uncontrollably for the next three days, anxiety attacks in the parking lot because remember that time you went into anaphylaxis and had to be rushed to the ER during a routine CT scan but no one seems to take that seriously???, or even seemingly unrelated things like getting my third COVID vaccine, but it was back-to-back with my injection, so my body completely shut down as a trauma response to pain and blacking out for several days? So those we can just pepper in at random, once or twice a month?

Let’s call it nine or ten out of every thirty or so days that are guaranteed to be harder than the rest, and additional five will be make-up days, where nothing is actively working against me but I’m recuperating from those combined nine or ten. And that’s being optimistic, I think. Maybe I’ll track it all in a calendar for awhile. Fifteen or so days that I won’t be feeling even my “bottom-of-the-line” functional. Fifteen days I won’t be up for cooking dinner, or taking my kid to her events, or answering texts, or --
The odds are not great on any given day of any given month. And it’s just, this, forever. Every four, six, weeks, for eternity, until the flesh heap fails.

I fumble to call my husband midway through typing the above.
It’s the fourth or fifth time this morning, just a couple hours long so far, that I’ve had a wave of hunger grip tightly at my stomach, immediately overpowered by another, larger wave—a more physical wave that sits me bolt-upright and has me gasping little breaths. My mouth becomes hot and fills with saliva that I know if I swallow will produce vomiting. Do not, I instruct myself firmly. You will not vomit today.
I don’t often get hunger-pain messages; usually by the time I do I’m already shaking and well aware I need to eat because it’s been 18 hours since my last nutrition. They are often accompanied with nausea, though not normally as extreme as today.
The second day of your cycle is always the worst, my brain informs me.
How do I know that? I ask back. It feels familiar; maybe just something I’ve noticed over time? My brain doesn’t bother shedding any other insight.
I stare at my phone. I dont know what shop he’s in right now, and his cell doesn’t have enough service. I call the quarterdeck, and whoever answers kindly asks me to repeat what I’ve said. I take another sip of air, as deep as my shallow rib cage will let me--why doesn’t it expand?—and repeat. I am transferred; whether to the wrong shop or he’s just not there, but the next person asks if they should take a message or go get him, he’s in another shop nearby. I ask for him. A couple minutes. Gage picks up, unaware of who it is, which then catches me off guard, I’m not sure why.
“Hi, hi it’s me, I’m here.” Stumbling. Words are stupid.
“Ah—what?” I hear the recognition in his voice, he just hasn’t caught my babble.
“Hi hey babe it’s me and I’m here!” I pant in a short staccato. “Hey um how is work, like is work good, is work busy? … Yeah can I like get food delivered or do you think you can bring some home, can you leave?” It’s panicky, apologetic and rushed. I’m so sorry to inconvenience you with my inability to feed myself but everything I have looked at in the house is repulsive and punches me in the gag reflex, I would like to order an overpriced soup to be delivered to our door or if you could casually leave your career at ten thirty am that would be really cool hey thanks!
He doesn’t see it that way, I know this, but I do.
We talk about his work day and what option is fastest; I’ll order food for the both of us and he’ll come home after he finishes up some stuff so he can catch Cake off the bus.
I tell him thanks babe, love you, see you eventually, but somewhere in there I whisper too, “I’m sorry.” And then I am suddenly crying, shrieking how yesterday I did SUCH a good job eating, yesterday I made breakfast AND lunch and they were really really good but I wanted rice with my eggs so last night I set aside a breakfast portion of rice, just for this morning! And I cry, and scream about eggs and rice, and he is silent, listening. Present, but what can he do but encourage me to order the one thing my body has decided it will allow?
“I’m sorry, babe,” he says softly.
“Thanks, I know. I’m sorry. I’m not mad at you, I’m just… mad.”
I’m just, mad. That’s one of my common phrases, too.


The order arrives as I am still working, and while it was the soup I craved, I’ve become fixated on my half-sandwich in the time it took for it to arrive, and I am taking out huge chunks ravenously, immediately. I get about three bites in before realizing my mistake; take a fourth for good measure, and pack it up just as quickly, right back into it’s wrapper. Snug, so I cannot smell it, and push it far away, out of sight. Open the straw wrapper (shame), say a prayer for a the turtles, and sip the coffee to get the reminder of sandwich far away from me. You will not vomit today, I remind myself.

​I head outside, smoke the remainder of my medicine from an earlier bowl. In short minutes, there is the ebb of relief, the sense of the nausea wave settling down and flowing back out calmly to sea. I am pleased, because I will not vomit today, not this round. And my face involuntarily scrunches up at the frustration I feel every time I acknowledge how well cannabis works and how much of a struggle it is for medical patients to get accurate, appropriate care, information, treatment … but ah Erin, another tale of a writing for another time.
I come in, calmly and easily sip up half of my soup, and feel full. Content even, I’ve eaten a good amount of food for a meal. Hell, I’ve now eaten a good amount of food for the day, by some of my standards.
…. It is half of a you-pick-two.
And it is monumental.
And stupid, and frustrating.
A fellow cancer patient said to me, “I don’t want to be strong, I want my body to work like it’s supposed to.”
And for sure, I’m writing about the worst things right now. There are the good days, okay days, the holy-freaking-fuck I did it! fantastic days, and the ones where you feel the best you think you’ve ever felt before, at least in this version of your life!
They exist. But the odds? The odds are never in our fucking favor.

this post was originally published on November 9, 2021 at 10:52pm, but was lost in a website transfer.

I am thinking of my weird-ass freeze-response.  I have no other ways of thinking of it yet.  It feels so … disingenuous? so clinical to refer to it this way, "freeze response." But I guess that's what this is.

I am thinking of a podcast where a spouse spoke of his ex-wife’s cancer journey; her changes in personality and life goals through her diagnosis and treatment, and how it eventually broke up their marriage.  He didn’t hold it against her, he knew cancer changes things; that wasn’t the part of the story he was even really telling, it’s the backstory to his own he is about to share.
But what he says beforehand caught me when I first listened: something along the lines of, how you would think, or how many people are under the impression that someone who comes back from cancer, they would find the joy in life, but how she went the opposite—she went dark.  Her mind took her to a dark place and the journey completely 180’d her.

It’s this thought that keeps coming back to me.  Again, it’s not even the premise of the episode, but it really catches onto something into my brain.  Because I too have “gone dark,” gone so deeply dark despite surviving cancer, whatever the fuck “survival” means.  It hasn’t killed me, yet.

Yet.

Don’t you have so much to be grateful for?  the collective disembodied voice asks me.  The monster of my own mind, or the one I fear others may wield above me.  The one I shirk back from, close my eyes and fawn for without even realizing.

Yes, I do.
I am not dead, yet, which means I am alive, which means theoretically, I do have so much to be grateful for.  And, I am.

Still. Going dark after you’ve been diagnosed with cancer, even after coming out alive, especially after coming out alive, makes perfect sense to me.  Because we been ripped from our able-bodies, the casing that holds together all our organs and our mind, the one thing in the physical world that we know to be truly and absolutely ours, and it has been revealed to us that it cannot be trusted.

“I want to be one of those fishbowl heads, like in futurama.” 
It used to be a joke between me and my oncologist. 

Then it became a plea, then a demand. 
I wanted him to do the impossible for me. 
​He’s a surgeon, fucking fix it.  The entire fleshsack is ruined.  Take the brain because that is the only thing good that is left, and stick it somewhere where the cancer cannot poison it anymore.

That’s not true either though.  It’s just my mind that’s worth saving.  There’s a little bitty (probably)-benign microadenoma up there, in my pituitary gland.  But that’s fine, some 20% of the general population actually has a microadenoma in their pituitary gland, they just don’t know because most of the population isn’t having their brains casually MRI’d every couple months.  But I am.  Or, I was at the time we found the fucker, but now I just have to have it done once a year. …. When was my last brain MRI?  I think that’s overdue.  I think that was due this past February.  …. Why do I think February?

It’s not that I’m not grateful to not be dead yet.  I’ve worked really fucking hard at keeping this meatprison bottom-of-the-line functioning, as has my spouse, my medical team, my friends and therapist.  Lots of work has gone into me and I am grateful for it.

​It’s just that it’s also really, really fucking hard to be okay when you really fucking aren’t.

There’s no okay after cancer, or terminal illness, or chronic illness or pain or ongoing trauma or whatever, fill in your blank.  My baseline okay is “strugglefucking.”

I’m late to appointments because I underestimate the time it will take me to do simple tasks, like getting dressed or brushing my teeth.  I shuffle around the house, grunting and heaving my admittedly pretty delicate frame around like it is a sack of earthy, soil-laden potatoes I’ve just brought in from the harvest.  But instead it’s just a bag of my own bones, same ones I’ve been carrying around the last three decades so you’d think I’d have the capacity to do that much at least.  But I don’t, I realize hopelessly as I am fluffing my pillows and pulling my quilt over my shivering, skeletal-feeling body at the end of each day, and am winded and wheezing just by the simple act of making myself comfortable.  Every evening I lay heavily, panting, catching my breath before I can rest for sleep.  Sometimes, my husband offers a hand tucking me in, but often I swat in his general area, insisting I got it I got it I can do it myself.

Other nights, I physically drag myself onto the bed, whimpering, crying a little as I ask him to please cover me up and whispering tearily I don’t want to do this anymore.

Those nights aren’t often, not anymore.  And if I really think about it, I’m grateful just for the ability to sleep in my bed.  That is another writing to come, later, when I am stronger.  When I can put into language what it was like, having to re-learn sleeping laying down, stretching the too-tight, too-raw skin of my belly flat and allowing gravity to tug at my mid-line incision, the drainage tubes tugging, my IV beeping occlusion as I try to drape my arm around the IV port, laying hopefully for a just a few soft seconds before howling out in frustration, in anguish, in pain, and having my husband slowly, carefully, but still as quickly as possible lift me upwards to make the animal-like cries stop coming out of his wife.  Guiding me back to the couch where I screamed, I didn’t want to sleep on the couch anymore – bile is rising in my throat and I am pushing myself currently because the words are taking me here, but I do not like it.  Another time.  I’m not ready for this.

And that’s fine, too.

He used to ask me what I meant by that, I don't want to do this anymore, I imagine worried that it was suicidal ideation.  Not new for me either, not this far in my life, but certainly doesn’t make it any less frightening, any more livable for your loved ones to process.  And in a way, it may be, could easily be interpreted like that.  But it’s a lot… simpler.  A lot less nuanced.  Sure, there are days where by “this” I just want to scream and wave my arms wildly, gesturing at everything, but I don’t actually mean everything.
​
I just mean … this.  This whole post, this whole ass predicament, this stupid fucking fleshsack, riddled with cancer, a genetic predisposition to monstrous little masses written explicitly into my DNA.​

​today is november first.
i wanted to launch my blog today.

three years ago, I died today.
not like, really actually died,
although i guess i came pretty close theoretically, that day,
and other times.

but who I was before this day three years ago, she died.
she didn't know she was going to wake up having died.
didn't know she was going to wake up a new person.
didn't know if she'd fucking wake up,
sometimes.

six weeks in the hospital. eight days were in icu.
it was six months before i was allowed to eat food
food. f o o d. no food. for six months.
i was fed intravenously, TPN, bright yellow "banana bags"
but i always thought they kind of smelled like french fries

and there was a tube, and formula feeds in my tummy,
for awhile.
the memories get hazy.

the whipple procedure cuts you all open and cuts your guts out
and then reconnects your digestive tract and
my pancreas leaked
into a bag I safety pinned to the waist of all my pants so that the tube wouldn't tug
for like, a really long time.

it stunk.
and my iv tubes would beep all through the night
and the word "occlusion" was both a curse and
a joke.

three years ago today, I died, but I came out,
or at least, I haven't died all the way yet.

i wanted to launch my blog today.
but the patreon hasn't been set up and the buttons direct weird and the photo menu won't populate why does everything populate except the photos and i haven't actually written my story yet i was going to launch with my story but this is coming along pretty cool and the ideas are coming along even faster and goddamnit this is so fucking stupid why won't the photos work, all i want to do is change a goddamned photo and god i am tired but i really want to launch my blog today and it's so late it's not even going to be read by anyone tonight anyhow but hey!
i did make it public, so even though no one has the address, i did *technically* launch it today!

and when i felt myself saying that last bit out loud to Gage, i could feel the smile creeping into my cheeks.
i could see that same smile flash in his eyes, in the dark,
where his face immediately lit up from below from his phone,
and he said "what's the site again?"
and i was suddenly on the floor, sitting against the edge of the couch,
leaning into him excitedly
waiting for the screen to load

and there was my blog, my beautiful homepage
and my stupid button that redirects to the wrong page but meh i'll fix it later
look how it's the perfect shade of pink?

and i am so exhausted but

it's november first,
twenty twenty-one.
three years ago, a version of myself died,
and i managed to launch my blog today.