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.

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.