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 i am a human tumblr feed, spewing forth memes and outdated pop-culture references incessantly.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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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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