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
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.
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"I had this moment of worry, that no matter how hard my family and friends tried, our lives were diverging, so drastically, that we would become strangers to each other despite our best efforts. Just because I was living such a different existence than they were. And my world, and my opportunities, and the psychological effort that I had to put in to deal with the situation that I was in, was very different than theirs."
I love Amanda Knox.
Her name may sound familiar; I'm not going to go into detail of her story, I encourage you highly to check out her podcast and Patreon for that. The short version is in 2007, at 20 years old as a college student studying abroad in Italy, she was wrongfully imprisoned for the murder of her roommate and friend, Meredith Kercher. She was sentenced to twenty-six years in prison, and served four before being exonerated and was allowed back home to the US. She is incredibly candid about the traumas of being coerced into giving a false confession and manipulated and abused (mentally and physically), her experiences in a prison system (in foreign country where she was actively learning the language), and how she thought when she came out four years later, she would resume her life which she had had to hit pause on so suddenly. But that life, that girl before, was gone.
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 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.
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 get two calls while writing this blog reminding me that this week i need to get labs drawn, and have an appointment with my oncologist, and then an appointment upstairs at the infusion center. but i was just there, i want to wail, but evidently it's time to go back, so I say happily, okay thank you, I'll be there! When I hang up, I want to cry. But instead, I'll type.
you learn to put on this façade of hopefulness,
because people need you to be strong and brave and inspirational.
(you need you to be those things too, erin.)
Cancer patients hate being called those things though, by the way. it's trauma porn.
(where the person saying those words, consuming the story, feels better for it, because you've done the good thing for the sick person?
but nothing's really done because telling someone they are inspirational doesn't do anything? trauma porn.)
i don't mean to make you feel badly. oh no i've told her she is brave and inspirational! its alright. well it's not but to err is human and whatnot. but it's exhausting, wearing the façade for others. "masking."
being brave is something you get to choose. being inspirational is something you choose. being a warrior. oh god to be a fucking warrior. strap on a suit of armor and a weapon and wield it wildly into battle. Whipple Warrior! thats a thing, it's a hashtag. I've used it. i hate it, but I use it, and it works. That's how Whipple patients have found me on Instagram. Thats how I've found them.
i didn't get to choose to be strong and brave and inspirational.
in a way here, i guess I am reclaiming these words.
this platform is giving me a space to own my traumas and turn them into inspiration.
that's okay, self. you can hate having been put into this role while still just rolling with it.
no, no one is forcing me to blog. but it's not brave to "fight cancer."
or even write about my story. the only thing that makes "fighting cancer" "brave" is the fact that it makes people uncomfortable. it's brave to make people feel uncomfortable because societal norms tell us comfort of everyone around us is of upmost importance (but only if they're an upper-middleclass white male).
what I mean is, i didn't choose to have cancer,
wouldn't have picked this even if it is a good one.
i "choose" to fight the fight and all that inspirational bullshit as much as any one of us chose to woke up this morning.
you don't choose to wake up, you just fucking do. whether it's an alarm or your internal clock, you're awake. you just are.
i am no braver for existing with cancer than you are for making yourself toast.
i wonder if I am being too harsh. i wonder if, if Amanda Knox reads this (she has my link), her face will blanche because this is not the message of hope she was putting forth on her platform. i wonder when I can let go of the anger. I really don't feel angry, but when I read my words back, i can sense it; latent underlying anger.
although I've also argued that "anger isn't an emotion, it's the most basic thing any animal can experience." It's a response, it's a lack of emotion. latent underlying exhaustion?
i wonder if, dear reader, you had a family member who passed away from a sudden, cruel, more-aggressive cancer, or you yourself have been diagnosed; a bad cancer, a bad illness. a worse one. were you angry when i said they all sucked and that mine gets to be lumped in with theirs? i'm not accusing you, i'm wondering because that is my initial reaction to myself. disgust with my admittance that this is shitty, what I am experiencing, because knowing my situation is shit and allowing myself to be vulnerable to that acceptance --
is that what brave is? accepting this is really fucked up and shrugging and moving forward anyway? is that what makes it brave, accepting you are broken? .... what then of those who don't accept they are broken? are they brave, too? this is why we don't like that word.
my dad died of metastatic pancreatic cancer. he couldn't accept he was broken. marines never say die. (or was that the goonies?)
it had spread to his bones, his lungs, his brain, his blood. it was fast and cruel, when it decided to become that way. he hid it for a long time, i think, but i don't even know because he hid it so well. he was doing okay, and getting better, he assured me, and then he was suddenly on oxygen tanks, and collapsing in the hallway and being rushed to the local ER and helicoptered to DC where he would pass away some few days later.
is it unfair of me, to him, to say that there is no good or bad cancer?
because that was certainly, without question, bad.
but, i remind myself too, it's not a competition.
i say this a lot, when people apologize for letting their inhibitions down, for "burdening me" with their traumas, for "bitching to the person with fucking cancer."
but i don't want you to apologize.
I want you to open up too.
you can be brave, too, you know, you don't have to have cancer to be brave.
your traumas are valid, too.
if it is a competition, it's not one i want to fucking win.
you're not burdening me when you share with me. you're reminding me that in all this fucking bullshit,
i'm not alone.
i still haven't written the story out. i don't know how to. in ways, i am maybe afraid to.
this also makes no sense, because i have written it, many times: in 500 words or less in an application letter for graduate school (a successful endeavor), in facebook groups that are seemingly unrelated but i swear to god the story it crops up fucking everywhere, following me always. it's some horrific shadow leering behind me and i cannot escape it, so i have merely learned to grab the story by it's cold wrist and drag it into the limelight and show it off--look! look at my trauma and how it cannot hide and therefore shame me!
but 500 words or less are so limiting. it's the skeleton of the trauma. the social media posts; cumulatively, there's so much raw data there, sure, but those words, those thousands of words, have been spread out over years. they flesh out the skeleton, but they're disjointed, in ornate canopic jars spread throughout the ones and zeros that build up the internet.
how do i collect the pieces and put them together to bring to life the story?
that even still would do no justice to the story;
what if I should bring the skeletons and organs and thoughts together,
flesh them out and prop it up
into some grotesque monster mary shelley once wrote a story about?
i have also told the story many times: a casually abridged version when meeting perfect strangers, detailed moments fleshed out during therapy. i have laughed and screamed and cried, all aloud. I have felt the story over and over, picking the scabs before they are ready, letting the bright red memories spill, watching the scab grow smaller and smaller but watching the scar remain, and truly, can it heal while I continue to pick? I guess so. Everything heals eventually. (or kills you).
i am sad to admit i had a miserable holiday this year. i don't recall my last happy thanksgiving. that's sad, too.
i used to love thanksgiving. it was my favorite--beyond halloween, beyond christmas, was my dad's thanksgiving. in my teenage years, after my dad retired from the marine corps and had a rather comfortably-paying government job, we had a huge two-story house in rural maryland that screamed of gentrification of the surrounding farmlands. The house was made for entertaining, and entertain my parents did, but just a couple times a year. The Filipino-American (Fil-Am) community there is abundant; they raised me, and they took turns throwing parties--house parties, graduation parties, holiday parties, birthday parties, I don't know, it's like a mouse with a cookie. If you give a Filipino a reason to throw a party... Thanksgiving isn't a Filipino holiday, but that doesn't stop them. My dad, one of the few white guys of the bunch, relished in hosting Thanksgiving. It was a huge deal for him. Each year, he planned a new and exciting way to present his turkey; different brines, bakes, broils, fries, seasonings--
but then, he died. in july of 2016.
2016, we must have spent at that giant, hollow house (my mom lives there still), and gage made a turkey. i don't remember it, but facebook memories and gage do.
2017, at a friends. i remember my mom came down.
2018, i was in the hospital.
in the hospital, sobbing and watching the food network because i couldn't eat anything, my nurses begging me to change the channel or turn the damn tv off if all you ever want to watch is food network to torment yourself mrs wilson
they asked me why i'd watch. i love food, i'd smile, thanksgiving is my favorite holiday, i'd explain, i can almost imagine what it smells and tastes likes and i miss it, and the tears would stream down my face as they brought in another banana bag, another stinking yellow sack of TPN, of liquid nutrition that smelled vaguely of french fries as it destroyed my veins, and i'd murmur that the first food i'd eat when i was allowed was a goddamned cheeseburger. not even a good one, a flat, shitty, greasy slice of fast-food that will surely tear apart the sutures the doctors are so carefully monitoring.
my therapist recently asked me why i watched, too, when I recalled this memory. i gave him the same answers. and then i stared beyond him, into the ac grate just above the floor, next to the bookshelf. this is the place i am comforted, the vacant space i address when i can't bear to see the compassion in his eyes. i cannot allow myself compassion when i relive the moments. i am allowed it, i know, but i have to make myself suffer, for now at least, i have to hurt just enough to be brought back.
so i tell the grate, instead of Norm, that it did also make me miserable: to watch cooking shows, to send myself the links to all the recipes i would not make (and some of which i would, eventually, months and months and months down the line...). Yes, it absolutely destroyed me, to obsess over food when I had not eaten in weeks. It had been about four I guess, by Thanksgiving. I was supposed to be home by then. I was supposed to be eating by then, although we had discussed how I had to be careful with what and how much I ate at thanksgiving that year since it would be so soon after surgery.
thinking of this brings a wry, twisted, pained smile to my face. i am still to careful about what and how much I eat, every day. i am not always. sometimes i do not care and i eat with reckless abandon, to be sent to my knees howling an hour or so later when my body realizes what I have done to it. sometimes, i do not care, and i do not eat, and i abuse my body, because eating will bring it's own pain and suffering, so i simply do not. sometimes, i take my digestive enzymes. synthetic enzymes, little seed-looking pellets inside a capsule. four with each meal, two with snacks. usually, i ignore them. it hurts. i hate them. i hate this stupid fucking body that cannot digest it's own food.
and then gage reminds me that it is not stupid that i had organs removed and my body cannot function properly without all of it's organs.
like when i make the comparison of denying a diabetic their insulin, everybody loves that analogy, would you ignore your mental health, no you don't, so why are you ignoring your physical health and i don't know really.
another canopic lid i can twist shut before storing this jar on the shelf.
i'm ashamed to admit that for over an hour this thanksgiving, i locked myself in my friends bathroom and cried. why am i ashamed? i am holding tight to my trauma's wrist as i weep in the bathroom. the cold outside was too intense and made my whole body hurt. the adults were outside and inside and outside and i could not do it and i excused myself to the bathroom, sat on the lid of the toilet, and sobbed. the heat was on and it was warm and comfortable, alone, quiet while the children laughed and played in bedrooms and the adults laughed and played outside, the thump, thump, thump, of cornhole and laughter outside the bathroom window. and i would reign in all this sadness, the lack of my dad, the last several years --
i have been going back and forth, trying to remember. Gage was in California for one, my brother and "sister" came and we had "friendsgiving" one year and i don't know what year that was, i guess last year.
sometime this last october, as i worried about what my third trauma-month anniversary would look like, i whispered to my therapist, i don't remember last fall. "I do," he had replied, and his voice was so low, so sad, so graven.
-- the feeling of loneliness in a house full of people who love me, and i cried over that, because knowing you are loved and yet feeling so, so totally isolated in your trauma, it is so lonely. it is so unloving. you can know you are loved, and feel completely devoid of love. you can, because i did. and that is it's own shameful admittance, because the most horrific thoughts (you know the ones) (...or do you?) were there, screaming in my face as the tears plummeted down.
But every time I took a deep breath, shut the thoughts up, cleaned my face, and attempted to stand and rejoin the party, I'd struggled to get back up off a creaking toilet lid. The full-body-tenseness that comes from baring down, hard, to forget the pain, comes with it's own problems, like becoming a rigid stone. My face aches, and my back aches, and my legs and ankles and toes my fucking toes hurt from baring down on them all day what the fuck. I untense my toes as i type this sentence, multiple times. Multiple. Times. I cannot stop from clenching my jaw, and my shoulders, and shoulder blades, and my legs are locked and it all fucking hurts but if I release my body from it's compression--the hips, my hips are screaming and then the legs, the legs they are weak and they buckle under me even as i stand up and grab the sink and stare at my puffy red eyes that have been crying.
And then Gage is there, apologizing because he thought i'd taken my iPad and audiobooks onto the couch the whole time (this makes complete sense, because I packed my whole #yourfavoritecancerbitch day-bag, which also includes a heating pad, keyboard, paperback and aaaaall of my meds); he brings me xanax (which I chew up through its bitterness), and lidocaine patches (for localized pain, which he applies to my shoulder), tylenol (which he congratulates me on admitting I need, but I ended up not taking because... i dont know, in some ways, i have to suffer. still. to this day. what if i become addicted to tylenol like that time i was addicted to oxy, and the surgeons are all telling me it is time to wean off the oxy, it has been too far post-op, but i am screaming in pain because oxy doesn't even touch this ---
that's how i came into medical cannabis. it helped me wean off of oxycontin. it helps me digest food to this day. it helps with pain management, every day. on the days that the cannabis doesn't help as much, are the days i admit i need a tylenol. maybe half of those times, i will actually take it.
another canopic jar for you, my friend, sweet reader. please hold that one tight so i can come back to it.
eventually i rejoin the household, but it still doesn't feel like thanksgiving.
i still feel lonely, in my ill body, because now i have brought attention to it and i am hyperaware. and i am not mobile. the children and the adults are mobile and move freely as the night does, and i do not hold this against them.
but i think of the plans that i tentatively made with my chosen sister, to join her at katsucon in february, and she is delighted and enthusiastic and so am i in that moment, but now i wonder, how can i possibly enjoy a convention without a caretaker? I had dreamed of a child- and spouse-free funtime with friends, when is the last time I did that? but i cannot ask my sister to be my caretaker to an event i invited myself to. and i cannot get off a toilet seat by myself on a bad day.
i think of thanksgiving 2015. my dad's last thanksgiving alive. i do not remember it. I look through my Pictures drive on my computer. it reminds me that we spent in in Florida, with my grandmother, my dad's step-mom who, upon my dad's death the following year, I had murmured "there's no legal- or blood-tie to us anymore." I had said it in a type of awe, in love, i must emphasize. I was remarking the incredible durability of the idea of family as people define it. She hated the words, but appreciated the sentiment. "Oh honey, don't say things like that!" I miss her now. I should call her soon. Hi gramma, if you're reading this. I love you and I'm sorry I haven't called you lately.
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 go back, year after year, until i reach 2008. it is as far back as the photos go, because i've lost anything older, and much is missing in the older photos i know. but i find no photos of my dad's thanksgivings.
this makes me feel sad, and this makes me feel nothing at all.
there are no photos I have available to jog my memories, my faulty, clouded memory; old ones have hard times resurfacing, new ones struggle to take root. memories are fickle to me, and it scares me, i don't know if it's cancer, or treatment, depression or PTSD or age or a combination of all of it.
there is simply a soft sad silence where my dad's holiday memories used to be,
a soft sad silence
where my trauma holds tightly to my wrist.
i didn't crash my car today,
so much as drove it off the interstate.
and into a ditch.
it wasn't a crash, and while i certainly didn't plan to fully exit the exit ramp and guide my SUV a deep ditch, i don't know that i can call it an accident either. it was raining, neither light nor heavy, just steady rain, and we simply... glided along the water and off the road. hydroplaned. into a ditch. . . . . o o p s.
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."
"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 [trauma]. We make lots of weird fucking jokes."
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.
"Your body doesn't hurt?"
"How about your head, how is your head feeling?"
"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.
"Maybe it broke off keeping us safe," I muse softly as he tells me this.
"From all the way across town at the base?" he chuckles.
"Sure." I continue, "It held on as best it could, but by the time you tried to pull us out, it had already spent it's energy."
We consider this in silence for awhile.
In my mind,
I thank the bell.
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:
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.
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.
like this, but better because i'm not some shitty ass old white dude
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.
tumors just poppin out of my organs! like daisies!
I am grateful to not be dead, it’s true. I’m just also really tired, every waking moment, of feeling like I will never catch up, like I will never bounce back, like I will never be alright, or be well. I am grateful to be alive, and have access to adequate medical care, and to be eligible for treatments, and to have an incredible support system, and to be able to go to a therapist for an hour every week.
And also, also, I just don’t really want to do it anymore.
But, I will, because, it’s what you do with the shit platter that’s been handed to you and you’re starving just to stay alive.
this post was originally written and published November 1, 2021 at 11:46pm but lost in a website transfer.
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,
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,
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.
and my iv tubes would beep all through the night
and the word "occlusion" was both a curse and
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,
three years ago, a version of myself died,
and i managed to launch my blog today.