"Do you count the wins?"
I am curled up on my therapist's couch, fidgeting with my thick wool scarf that I have draped across myself as a sort of blanket.
"I don't have wins," I say through a new wave of tears, "otherwise I wouldn't spend each day wondering what the fuck I've done all day."
"You do have wins," Norm replies calmly, "you made it here today, and that's a win. You get out of bed in the mornings, and every day, that's a win, because I know how depression beats you down and I know how hard it is to get out of bed, and that that is a win, that some days you cannot get out of bed."
"But I've never had the depression so bad I can't get out of bed!" I wail at him dramatically, "I have a kid! I have to get out of bed! … I just … can't get off of the couch afterwards, is all," my voice grows softer at the realization of what I'm admitting. I add in, louder, "I don't count those as wins. Little things aren't wins, they're just things I have to get done."
"I didn't say they had to be big wins. They don't have to be monumental, incredible, life-changing wins. Little wins, every day wins. You need to acknowledge them."
He hands me a notebook and tells me he wants me to keep track of my wins. I had lamented earlier that it sucks being so self-aware!,
"It sucks," I cry, "I know that all I have to do is switch my PCM, that it's just a phone call, or a website, and if I get back on my Cymbalta--"
"I didn't know you were off your Cymbalta."
"I went off it in November," I admit weakly before continuing, "but if I get back on it, if I could do this one thing, I could start to do all the other things! And then, things would get better..."
"But making the call is two-thirds of the work, it's the hardest part of the task."
"Yes! I saw this, this thing, this meme? It said basically like, people with ADHD, with executive dysfunction, like, we know how to do the thing! It's not that we don't know. We know, we know six different ways to do it and the best method to use in any given situation! It's the matter of doing it!"
"It's too much," I agree, weeping openly again. "It sucks being so self-aware, I know how to fix it I just can't!"
"No," his disagrees now, "it sucks being so self-aware of only the negative."
This is where he had suggested counting the wins.
Somewhere in the conversation, I said I try to! I try to count the wins!
"I was thinking of, over the summer, I remember I had this one really really good week! I had made three phone calls, and I'd made it to appointments!"
He is grinning and nodding emphatically, remembering this exceptional week with me.
"I remembered how proud I was, I made three phone calls! And remembering that now... just made me feel so. fucking. stupid."
"Wow, that took a quick turn." he snorts, and I grin sheepishly.
"It's truuue though," I groan, "that's how it is! My brain! Just, wow, you are so pathetic, you were proud of yourself for making phone calls. like, wooo, wow, good job." I slow clap.
"I used to do things!" I tell him.
"You used to not have cancer."
I cry. How dare he use the cancer card on the cancer patient.
I don't know how I spend my days. I don't know what I do all day; I think of all the things I should be doing, that need to be done, the chores, the endless tasks, the calls and appointments that loom in my mind but I refuse to allow to happen, I wander from room to room vacantly, wondering what I should do, where do I start, I am so tired, what do I do? I am immobilized when Cake and Gage are at school and work: by my loneliness, by my lack of direction. They come home, and there is too much going on and too much to do and I could get so much more done if they just weren't up my ass--but that's not true because I don't get anything done when they are not here, I am void.
Norm tells me this is classic ADHD. He suggests I set alarms, timers. We acknowledge that while society has taught us "work first, fun later," an ADHD brain needs the opposite to function. We have no dopamine in the fuel tank, and we need to have fun first, fill up on fuel, before we can work. Can't run on empty! I agree and I understand and I know these things make sense but they make me angry
"I want to win like I used to!" I howl at him.
Writing this now, I realize that part of this is grappling with my own loss of expectations.
To win, like I used to, to win like I had expected I would be at this point in my life.
I used to be an integral part of the indie sewing community. I tested PDF patterns prior to their release, I sewed up sample fabrics and promoted them for sale. I was basically an influencer for sewists, and I was good at it. It was fast-paced, with tight turnaround deadlines, competitive; I was in a coveted position and I'd apply for jobs and get them because of who I was; I relished in this, in feeling in-demand, in feeling valued for my artwork I was producing. My photography excelled. I have gorgeous photos of Cake for the first four or five years of her life because I'd get the detail-shots companies needed, but I'd get the gorgeous mom-shots too, documenting this beautiful human growing up before my eyes. I had a job working as a design assistant for one of the pattern companies. I was fulfilled, I won daily.
Our company was growing. My reach was growing. There was so much to do all the time and all I needed was a little more time. Once Cake is in public school, I will have time, I thought.
Then Cancer happened.
then the Pandemic.
now, finally, she is in public school,
and my entire world has shifted.
not even shifted. altered.
over three years have passed and it's an entire lifetime ago where I sewed promotional pieces, glanced at a calendar and thought "yeah I can squeeze in one more sew this week," and signed up for a last-minute round, where I woke up with an energy I could take for granted.
when I wake up now, it is slow, calculated. it is heavy and sickly feeling, a bile in my throat and a rock in my stomach. my head pounds. if i am lucky, it passes, but many days, it is just default.
i wrote the above about three weeks ago. mid writing, i lost part of it. then I felt sick and needed to lay down. It frustrated me more, made me angrier. what a perfect highlight to the fact that I cannot fucking win. what wins to count!
then COVID came to our house.
the three of us are fully vaccinated. I'm boosted. we never freakin leave the house. We wear our masks everywhere. But ayyye that's how it goes and ultimately it's okay because we are okay. i'm grateful for that.
it lingered forever. Gage and I were both down for a good 10-14 days.
Cake never felt a thing and kept asking if she could go play with a friend.
"No, babe, we have COVID, you're quarantining."
"Oh man, I forgot."
... must be nice kid, lol.
and i've been thinking, a lot, in these last three weeks, as I considered how I needed to finish writing, how I'd lost the momentum for it, how COVID felt like it drained me of the momentum for everything. like a stone that finally rolled to a standstill and could roll no further, sinking heavier, heavier into mud. my body, my mind, dense, heavy, sinking, sticky squelching mud. haven't kept up with my procreate classes. haven't kept up with writing. haven't kept up with the laundry or house chores or my text messages, messages checking in on me, asking me if they can help, and i can't summon the mental capacity to even text back what kind of swiss cheese brain is this--
i've thought about choices.
because in that same session with norm that had prompted the beginnings of this post, I had lamented:
don't i have what people want? people want to stay home and do whatever they want and not have to go to work, right? i've got that. so why can't I be happy for it?
and he pointed out, no. people want to have choices. people want the ability to work and choose to stay home instead. people want to have worked and then enjoy reaping the rewards of their hard work.
and do i even get to do "whatever I want" all day?
i've said before. i didn't choose this. wouldn't choose this life, ever.
of living through cancer.
with? living with cancer?
cancer.. thriver... survivor.. am i survivor? i'm surviving.
"I'm not dead yet!" i answer with a wry smile when my friends ask me how i'm doing.
i don't choose to sit home and do whatever i want all day.
i am homebound because i have cancer and cancer has taken away my ability to work.
i am homebound because i have cancer, and cancer has taken away my ability to do things i enjoy.
even the things at home.
like sewing, because it's too much to print and piece a pattern, then cut it out, lay out the fabric, cut it out, sew it together. there's ironing and back and forth and trimming and cutting and so many involved steps and... i love it. i miss it. it's exhausting now.
so i'll cross stitch.
but that requires focus, to read a pattern, to sit upright, to see up close, and my eyes burn, my head is pounding, my body aches and i want to lie down, and close my eyes
so i put on an audiobook, or a podcast, i'll listen to someone's soothing voice narrate me away into a different world, i'll expand my mind...
but my body, my mind, are tired, and so i fall asleep.
wake up several hours later, several episodes or chapters ahead of what makes sense, frustrated because where the hell did i leave off?
and sometimes it takes me days to listen to a single episode.
not always. sometimes i binge an entire season in a day, like any other normal person these days, lol.
there's this guilt in me i can't shake, but i'm trying, so hard, to unlearn it, wherever it came from.
i can point my finger at late-stage capitalism, at survivor guilt, at cPTSD, whatever i like.
doesn't change the fact that it's there and i know it is and i need to unlearn it.
i've been reading The Psychopath Test by Jon Ronson. In it, he interviews a woman who survived a bombing on a train in London. She formed a survivor group; many of those in the group admitted that since the attack, they found little purpose or enjoyment out of life anymore. how do you move on from something as senseless as a terror attack on your way to work one morning?
and i get it.
i hate it. but i get it.
every bit of apparent logic says surviving death should make you grateful and thankful and vibrant and full of life
but instead it's just (or, can be) harrowing.
it's a good word for this.
i'm trying to actively find joy in small things. it's hard to count my wins.
i've been working on it for three weeks now apparently, and i am trying.
why do we feel the need to rush to the end, rush through life, rush to the finish line, we'll enjoy it when we get to the end, just get there fast! when instead we can enjoy the road on the way there? enjoy the smallest details along the way?
so i'm trying to actively see the beauty in the mundane. truly enjoy my morning coffee. listening to the crackle of the record player. when my cats leap into my lap, i engage with them actively. enjoy their presence.
Cake hugs me. I lean in and breathe in the scent of her hair, brush my cheek against hers and feel how soft her skin is, how beautiful her little nose is, the sound of her little voice singing as she skips away.
i enjoy the act of painting my nails. they're short, bitten down, but that's okay. i watch the colors slowly build through each layer. absorb my audiobook while i admire how shiny the topcoat makes my nails as they dry.
i picked up a quilt i started about two years ago. must have been; it was a quarantine project, I remember cutting squares in what was Cake's homeschool classroom at the time.
it's still a good amount of shuffling back and forth, ironing, stitching, squaring off pieces. but they're smaller pieces (for now, lol). i can work in small sections, it's repetitive enough i can put it down and pick it back up and remember the steps pretty easily. it's unfamiliar enough (i'm an apparel seamstress, it's a different world than quilting) that i'm still experiencing the new excitement of working with unfamiliar fabric, unfamiliar stitching methods. i've decided i'll send the top in to be professionally quilted, and i'm excited just thinking about recieving it back, how it will feel to cuddle on the couch with a real quilt, heirloom quality type shit.
i've been touching the other quilting fabrics i've collected over the years, because i am a sewist only because sewing is what you do with fabric, and first and foremost, i am a fabric collector.
i'm allowing myself excitement, looking forward to things i like doing.
i'm getting better at it.
little blips of happiness, of serotonin, of allowing wins in.
if i can allow my world to be beautiful, perhaps i can allow myself to find myself such as well.
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i worry that my blog is too heavy.
this weighs on me, although i don't really know why, because... it's a blog about cancer, no-holds-barred. it's... gonna be sad.
it's mostly my inner fears, but sometimes external voices wonder the same thing. it's a bit raw?
yes, i agree, it is. it's meant to be. i like it this way.
i decide that it weighs on me because i am actually a pretty funny person, i'm fun to be around.
i make a lot of jokes, i have lyrics that i will sing off-key at you for any situation--i'll change the words to better fit the situation. (i am not a good singer. this does not stop me; it likely encourages me.) i am a human tumblr feed, spewing forth memes and outdated pop-culture references incessantly. body allowing (or often, at the expense of my body), I am animated: i dance, flail dramatically, pose.
"It's performative ART!" i screech to my family.
"What IS art?" Gage muses extravagantly.
Our eyes widen at this mass undertaking: what is art? we feign our brains exploding, being literally blown away at the enormity of the question.
To see Gage and I interact together, to an outsider, has got to be akin to having first-row tickets to a sitcom performed in front of a live studio audience! ...in another language.
we feed and bounce off of each other in perfectly nuanced time and consumed media over the last decade plus.
i think of robin williams. and bo burnham.
sad people are funny. or, funny people are sad? we're funny because we're sad, and that's how we cope?
either way, i conclude that i am both a funny and deeply sad person, and so that's fine and checks out.
"maybe you could keep a journal of all the good things that happen in the day!"
i smile to myself at the idea, because the good things are not lost on me and i wonder if some readers feel this. i dont think the majority do, i think this is a generational difference in perception. a majority of my friends, my readers, are millennials. we're my target audience, and my audience gets it. i know this, because you are messaging me.
before i launched Little Torch Blog, I would sometimes share my musings in the form of long, block-text facebook updates. a couple of friends began to reach out over private messages, sharing with me their personal stories. i'd made them feel heard. they felt the same way. they had experienced the same thing, not the same thing but the feelings were the same. the encouraged me to write more.
since launching Little Torch Blog, the messages are coming in, a little more here, a little more there. I can't always reply to them in the way I want; please know I read every message and it sets my heart aflame and it warms my soul and together, this fire will connect us and keep fueling us forward.
we're not alone in our feelings of hurt, and sadness, of gratefulness woefully balanced by pain. truly, isn't that the sentiment, you can't have light without dark, etc?
expecting, or projecting, positivity all the time does not make darkness exist any less.
instead, i'd rather acknowledge that we've all seen darkness before.
it is injection day, and i consider the good things.
i am driving to the naval hospital.
i can feel the anxiety,
can feel my body tense and my palms sweating as i grip the wheel too hard,
my breath coming in and out in chopping motions.
so, i consider the good things.
it is beautiful outside.
it is winter, but it is unseasonably warm.
the sky is clear, the leaves are copper, wispy clouds amble across my windshield.
i miss my exit while i consider how beautiful it all is.
i consider, as i take the next exit, circle back around onto the interstate, take the correct exit this time,
the fact that i have neighbors, who are friends, who are willing to watch Cake, with only a day's notice,
because I didn't realize until the day before that injection day is the same day Gage returns to work and Cake is still on winter break,
and no one under the age of 18 may be a visitor in the AIC (Ambulatory Infusion Center),
and how lucky i am to have people nearby to rely on. it hasn't always been the case, certainly.
i consider, i look cute and feel good.
i mean, not good good, but pretty decent.
i did my make-up, took a shower, put on jeans, grabbed a coffee.
i am excited to see my nurse, Miss Zee, who is retiring at the end of the week.
She made sure to schedule me with her one more time before she left.
She squeals and hugs me when I arrive.
I consider the beautiful things.
How would you rate your average pain lately?
I hate this question. I think everyone does, really, no one looks like those stupid faces.
"Three to four," I say after a moment of consideration. I normally say "two to three."
Looking at this scale now, I think it is probably more of a "five to seven" range, but they also say "ten being the worst pain of your life," and well I've been sliced in half and vacuum-sealed shut (no that is not a euphemism) so i mean what's some tummy-achin?
Where would you say a majority of the pain is coming from?
This answer varies month to month. Once, I airily sighed "my bones," and gestured to all of me, to which I received a strange look, but the corpsman wrote it down all the same.
This time, I talk about my hips, my legs feel loose and the joints ache, how the cold is bothering me, how my inability to gain weight makes me cold, which makes me bare down, tense up and shiver, which makes my body ache, it's cyclical--
How about any tingling, numbness in your extremities?
Yes, but, hey now that I'm thinking about it it hasn't been as bad lately. It's still there but it's not as bad as it's been and it goes more than comes, so yay!
Any diarrhea? Constipation? How often are you going to the bathroom?
I bark laugh.
there is always diarrhea.
How often would you say?
Six? At least?
That's a Cards Against Humanity card.
How are you doing with nausea, vomiting?
Well I'm nauseous all the time. Haven't been sick to the point of vomiting, not lately. I gagged and retched some this morning, but no vomit.
Do you find anything helps with the nausea and vomiting?
I lean in conspiratorially, grinning, and with my hands splaying out in mock-fanfare: "Cannabis! I smoke a lot of cannabis!"
My corpsman is both grinning along with me and also slightly mortified, this being a government treatment center and whatnot. The large marquee on my way into the parking garage this morning had boldly reminded all drivers that "MARIJUANA IS STILL ILLEGAL UNDER FEDERAL LAW!!!"
I relax into my chair and wave at him, "it's fine, it's in all my charts, my doctors and nurses all know."
"Oh, okay," his smile sets into relief.
Bloodwork is required each time before I can receive my injection. I don't mind this, it's good to have bloodwork regularly. When I was being taken care of by a home-health nurse, I didn't need bloods done before the injection, so I believe this is a hospital policy.
My bloods are drawn, sent to the lab.
It normally takes about two hours for the bloodwork to come back, to get the approval to give me my treatment, for the injection that lasts about a minute and a half. I'm normally in the hospital a total of about three to three and a half hours. It is tiresome, but I can read, and I talk and make friends, and it's okay.
After an hour and a half or so, my nurse checks on my bloodwork. All but one of the tests have populated. She calls about this one, but the lab tells her to be patient.
She calls again about forty minutes later. The lab tells her she needs to wait, to which she snaps that she has a patient awaiting chemo treatment and she's already had to put the meds back in the fridge once, where are the blood results?
"Miss Erin!" she cries my name angrily at her phone, "it has been two hours and they weren't going to tell me?!"
I look up from my book.
"Whatsamatter? Want me to deck someone? You tell me who Miss Zee, I'll get 'em."
She laughs, groans, explains to me my blood curdled and the lab was just not going to bother calling her about it to request new blood. She draws from the other arm. Resends the blood. Calls the lab back and tells them exactly who is dropping it off and that she needs the results right now.
I am smiling and patient and sweet to Miss Zee. It is not her fault. I don't think it's necessarily the fault of any one person, although today i am quite ornery with the idea of "the lab" as a whole. I am smiling but it is becoming a grimace, because instead of three hours I have been here four and a half and I am getting achy, hungry, and the panic has been humming, droning on in the back of my mind and i want to go home to rest--
Miss Zee is clicking furiously on her computer; the results populate, she lets out a triumphant cry, and administers the injection.
And then we are saying goodbyes, squeezing each other tight, making jokes and exchanging phone numbers, and I am back in the parking garage, backing out of the handicap spot, back into the bright blue light of day, I am home and it is done.
"You have got to be fucking kidding me," I cackle hysterically that evening, at the spot of blood as I wipe away pee.
Guess that's why my hips have been hurting so bad lately.
I've mentioned how my period is irregular; this fact fucks with my spoons.
Two months ago, it arrived exactly on injection day. Which sucked. Double pain!
Then it went away. for another eight weeks. That's an entire missed cycle, if you don't have your own pet uterus. This will fuck with your mental spoons.
It arrives again, exactly on injection day?! What the fuck, body!!
I wake up at 2:10 am.
and 2:28 am.
4:03 am, and I can't keep forcing myself to go back to sleep any longer.
I go to the bathroom. Injection poops.
(this is going to get gross)
they're foamy. they sputter and it's all gas but also solid somehow and it's yellow, a weird muted yellow. except when it's orange, bright fucking orange, oily and slick. there's more poop than there is I think food I've eaten, which doesn't add up.
the smell. god the fucking smell. iono man. cancer, or the lack of bowels, or injection, something in there ain't right.
I go back to bed. Snuggle in.
Sigh, get back up, go back to the bathroom, get back into bed.
Gage's alarm goes off at 4:30am.
While he is in the shower, I cry into the pillows.
The fact that I am crying first thing upon waking up, because of poop, makes me cry harder.
I'm not actually crying because of poop.
But it is the thing that has brought me to the point of tears.
Everything hurts. My stomach hurts, writhing angrily as the medicine does... whatever the fuck it does to keep my tumors small. My uterus hurts, my back hurts, my front hurts, my head is pounding and there's nausea and my stupid butthole hurts from pooping all the damn time too.
its funny to make poop jokes, everybody poops, but it's really one of those funny-not-funny situations.
people aren't supposed to have to poop six times a day, minimum.
out of bed, to the bathroom, back into bed. third poop's a charm.
Gage comes out and strokes my hair and comforts me, but he has to go to work.
I get up, smoke cannabis, accept the appetite that comes along with it and make myself a bowl of instant mac-and-cheese at 5:40am; i do not know if I will have an appetite later, so I eat what I can now.
I gather my books I am reading, my laptop, my keyboard, an extra heating pad, oh my muscle relaxers can't forget thoooose, some blankets, a pen, my notebook full of blog ideas. I make a make-shift office in my bed. If my brain is going to be awake, I can let the body relax while I type.
at 7:00am I am comfortable, in bed, ready to think, ready to write!
and i fall asleep.
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new to the idea of crowdsourcing, not really sure what it's about or why someone would crowdsource? here's a little more information :)
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 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 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.