injection day (12.02)

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 -- 

"thank you erin... and parker, for asking [for the blog link].  going to read, the blog looks so beautiful, i love the design of it, too. i just scanned "the good cancer," ... and i love your writing style... erin... all my love is flowing your way as well.  better out than in, all of this stuff, and i am adding you to my little prayers this morning. the ride goes  on. erin: one more question... do you mind if we add this to the althing/community writing round-up??  i think it'd be a great add."
- amanda FUCKING palmer in response to my comment on her patreon feed.

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.

​y'all her book--her book that was a new york times bestseller--is on my desk, and she said she likes my writing​.
w e e p.
i know, she's a normal human being, and, and!  i know i am a good writier.  (s c r e m  admitting that makes me want to bury myself)
​
.... but still if this is the pinnacle of my writing career, at least i know i didn't peak in high school.
​hahahahahahahaha.
ehhuuggghhh.

take the flower.
i am a good writer.  i am valid.

---

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 cannot emphasize my disdain for the hospital.  as grateful as i am to have a local place that has next to every treatment option I need; as much as i adore my nurses; as relieved I am that I do not have to drive to baltimore, four hours each way, every month; as grateful as I am to be capable of being discharged from home-health care...
i hate the hospital.  thinking of it, seeing the picture above of the drive there, seeing the picture i took in the waiting room and seeing my exhaustion, really seeing it, a week later, it hurts me.  like i am having a physical reaction.  my body tenses up; i'm immediately on edge.  shortened, shallow breaths.  i hate the place.  it's saved my life.  it's keeping me alive.  it causes me mental anguish.

​in the ambulatory infusion center, i make a friend.  i hate that; that i'm excited to make friends in the cancer treatment room.  

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

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

so i rest.  and it repeats.

---

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

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

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

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

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

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