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 overwhelming."
"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. 
and Homeschooling.

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.

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.

​new to the idea of crowdsourcing, not really sure what it's about or why someone would crowdsource?  here's a little more information :)

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.
whoops.

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.

​injection days.

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
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?

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I go back to 2014's pictures, but they do not reveal to me our thanksgiving plans that year.  We spent the week before with Gage's sister, and the Christmas in our small rented condo, having just moved in two weeks prior my parents came down. ​

​I can still hear my dad's voice announcing triumphantly in the Target aisle, "First stuffy from Papa!" as he waved the red octopus in the air, legs flailing wildly.  It is his gruff voice, but it is also forced, warbles on a higher note.  One of his vocal chords is paralyzed.  He dubbed the octopus Octavian. 
​To this day, Cake brings me  Octavian when I am crying and missing my dad.  Or just, when I am crying, and she feels I could use my dad's presence.  Without fail, the arrival of the red octopus stuffy and Cake's sweet little "Papa?" offering will elicit a happy, strangled-sounding cry from me, with love and sadness, gratefulness and anguish.  He has spent nights at the hospital with me, nights on the couch, has appeared in my office at this desk that I am typing at.

I wake up already feeling sicker than usual, and this is disappointing. I frown into my pillow. Why is this? My injection symptoms have more or less faded, the back pain hadn’t been so achy the last few days. And then I remember, and I sigh.
That’s right folx, I’m talking about menstruating today. Buckle in.
Eh, I’m kidding. I mean, yes, that’s what is going on this morning, but that’s not what I’m writing about at large. Let me clarify a bit more.
The odds are never in my favor. I am not saying this to complain, although let me be the first to admit I do complain, often and loudly. But it’s just, true.
May I present to you, the maths:

• Every four (4) weeks I receive my monthly injections. The initial day I’m fine, but the following three or four I am miserable. Exacerbated nausea & vomiting, Body aches, particularly my lower back/top of my butt, depending on where my nurse felt was the “right” section that day. Because it’s a trial drug and a really uncommon applicator and I dont even know man, it’s weird, like everything is with me. Irritability, exhaustion/fatigue, incoherence/fogginess, loss of appetite. Feeling really shitty, generally. Guaranteed three to four days of the month.
• I was genetically gifted with a uterus. Thanks, I hate it. I have an irregular cycle, and I’m not sure if it’s from my birth control I use (nexplanon, do love, highly recommend) or stress all the time or my MENS1 or the whipple— I very much think a combination, but I think it’s generally about every six (6) weeks, and that’s about what it’s been this time, so we’ll say that. Thankfully, mostly in part to the nexplanon again, it’s fairly light and short, so we’ll call this four to five days. But like man, light doesn’t mean pain free, okay? The first time I ever threw up from period pains was the week before my very first menstruation, in middle school, we thought I had a stomach flu at the time. And then it wasn’t for another fifteen years or so, the whipple fucking sent my body into every sort of spiral, and now each new cycle feels like the very embodiment of what’s happening: I can feel my insides tearing themselves apart, an angry cartoon uterus with talons for nails is shrieking about how she didn’t get her baby and she decorated the nursery for nothing, so now she’s stripping out the wallpaper. It’s me, I am the wallpaper. And the nursery. Honestly how this bitch thinks we are a suitable host for another human being is beyond me.
• Chronic pain, nausea, fatigue daily. (If you haven’t heard of or recently read the initial story of the Spoon Theory, I encourage you to take a pause and do so now! It is beautifully written, and that link should open in a new tab for you.) I already have a low starting amount, and being unwell for so many days back to back, unable to eat but equally unable to revive my body without nutrition, I pull from tomorrow’s spoons, and the next day’s, and the next, and soon it is a game of just playing catch up, a hope that there is a breaking even to the surface before my lungs give out.
• The extra spoons required of going to appointments, having scans done with contrast drinks that will make me ill and shit uncontrollably for the next three days, anxiety attacks in the parking lot because remember that time you went into anaphylaxis and had to be rushed to the ER during a routine CT scan but no one seems to take that seriously???, or even seemingly unrelated things like getting my third COVID vaccine, but it was back-to-back with my injection, so my body completely shut down as a trauma response to pain and blacking out for several days? So those we can just pepper in at random, once or twice a month?

Let’s call it nine or ten out of every thirty or so days that are guaranteed to be harder than the rest, and additional five will be make-up days, where nothing is actively working against me but I’m recuperating from those combined nine or ten. And that’s being optimistic, I think. Maybe I’ll track it all in a calendar for awhile. Fifteen or so days that I won’t be feeling even my “bottom-of-the-line” functional. Fifteen days I won’t be up for cooking dinner, or taking my kid to her events, or answering texts, or --
The odds are not great on any given day of any given month. And it’s just, this, forever. Every four, six, weeks, for eternity, until the flesh heap fails.

I fumble to call my husband midway through typing the above.
It’s the fourth or fifth time this morning, just a couple hours long so far, that I’ve had a wave of hunger grip tightly at my stomach, immediately overpowered by another, larger wave—a more physical wave that sits me bolt-upright and has me gasping little breaths. My mouth becomes hot and fills with saliva that I know if I swallow will produce vomiting. Do not, I instruct myself firmly. You will not vomit today.
I don’t often get hunger-pain messages; usually by the time I do I’m already shaking and well aware I need to eat because it’s been 18 hours since my last nutrition. They are often accompanied with nausea, though not normally as extreme as today.
The second day of your cycle is always the worst, my brain informs me.
How do I know that? I ask back. It feels familiar; maybe just something I’ve noticed over time? My brain doesn’t bother shedding any other insight.
I stare at my phone. I dont know what shop he’s in right now, and his cell doesn’t have enough service. I call the quarterdeck, and whoever answers kindly asks me to repeat what I’ve said. I take another sip of air, as deep as my shallow rib cage will let me--why doesn’t it expand?—and repeat. I am transferred; whether to the wrong shop or he’s just not there, but the next person asks if they should take a message or go get him, he’s in another shop nearby. I ask for him. A couple minutes. Gage picks up, unaware of who it is, which then catches me off guard, I’m not sure why.
“Hi, hi it’s me, I’m here.” Stumbling. Words are stupid.
“Ah—what?” I hear the recognition in his voice, he just hasn’t caught my babble.
“Hi hey babe it’s me and I’m here!” I pant in a short staccato. “Hey um how is work, like is work good, is work busy? … Yeah can I like get food delivered or do you think you can bring some home, can you leave?” It’s panicky, apologetic and rushed. I’m so sorry to inconvenience you with my inability to feed myself but everything I have looked at in the house is repulsive and punches me in the gag reflex, I would like to order an overpriced soup to be delivered to our door or if you could casually leave your career at ten thirty am that would be really cool hey thanks!
He doesn’t see it that way, I know this, but I do.
We talk about his work day and what option is fastest; I’ll order food for the both of us and he’ll come home after he finishes up some stuff so he can catch Cake off the bus.
I tell him thanks babe, love you, see you eventually, but somewhere in there I whisper too, “I’m sorry.” And then I am suddenly crying, shrieking how yesterday I did SUCH a good job eating, yesterday I made breakfast AND lunch and they were really really good but I wanted rice with my eggs so last night I set aside a breakfast portion of rice, just for this morning! And I cry, and scream about eggs and rice, and he is silent, listening. Present, but what can he do but encourage me to order the one thing my body has decided it will allow?
“I’m sorry, babe,” he says softly.
“Thanks, I know. I’m sorry. I’m not mad at you, I’m just… mad.”
I’m just, mad. That’s one of my common phrases, too.


The order arrives as I am still working, and while it was the soup I craved, I’ve become fixated on my half-sandwich in the time it took for it to arrive, and I am taking out huge chunks ravenously, immediately. I get about three bites in before realizing my mistake; take a fourth for good measure, and pack it up just as quickly, right back into it’s wrapper. Snug, so I cannot smell it, and push it far away, out of sight. Open the straw wrapper (shame), say a prayer for a the turtles, and sip the coffee to get the reminder of sandwich far away from me. You will not vomit today, I remind myself.

​I head outside, smoke the remainder of my medicine from an earlier bowl. In short minutes, there is the ebb of relief, the sense of the nausea wave settling down and flowing back out calmly to sea. I am pleased, because I will not vomit today, not this round. And my face involuntarily scrunches up at the frustration I feel every time I acknowledge how well cannabis works and how much of a struggle it is for medical patients to get accurate, appropriate care, information, treatment … but ah Erin, another tale of a writing for another time.
I come in, calmly and easily sip up half of my soup, and feel full. Content even, I’ve eaten a good amount of food for a meal. Hell, I’ve now eaten a good amount of food for the day, by some of my standards.
…. It is half of a you-pick-two.
And it is monumental.
And stupid, and frustrating.
A fellow cancer patient said to me, “I don’t want to be strong, I want my body to work like it’s supposed to.”
And for sure, I’m writing about the worst things right now. There are the good days, okay days, the holy-freaking-fuck I did it! fantastic days, and the ones where you feel the best you think you’ve ever felt before, at least in this version of your life!
They exist. But the odds? The odds are never in our fucking favor.