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 :)

"Would you like a pastry today?  We're running a special, they're half price!"
​
My stomach has been rather uncertain all morning (I got sick a little first thing waking up) and I'm not particularly hungry, but I love pastries.  And a good deal.  So I tell the barista through the drive-through speaker, sure, do you have a cheese danish?
She asks if she can heat it up for me.  She is so bright, energetic, and seems genuinely happy.  I can feel her warmth and exuberance in her voice, through the brown speaker box.  I've been in a hazy brain-fog all day, but hearing her speak, I can't help but find myself grinning back at the box.  Contagious happiness.

Roots of problems: I haven't taken my meds (cymbalta: depression & anxiety, adderall: adhd) in two months 
Because I need to call for refills
But I also need to get a new PCM (Primary Care Manager), one who believes patients,
one who doesn't blandly tell me that I should have learned how to deal with my ADHD symptoms by now.
But to get a new PCM would be to make a phone call, or to find the website, a task, it's easy,
but executive dysfunction stands in the way, it's a symptom of ADHD,
You know, that thing my PCM said I should have just learned to manage on my own by now, because I'm an adult?
She literally told me that.  That if my ADHD was really "that bad," I would have gotten diagnosed sooner.
as if huge life-changing moments, 
like having a child,
or being diagnosed with, i dont know, cancer, twice,
or having one of the most invasive abdominal surgeries available,
or emergency bowel surgery,
or a global pandemic,
or just getting older and life progressing generally as it does--
as if life doesn't change and alter and so do your mental health needs?
So here's me, managing, on my own.

I eventually did get her to write me a prescription for Adderall
But so low a dose everyone else is surprised it works at all (but it does!)
(a testament to how dopamine-depleted my brain is, my therapist muses)
And with so much guilt and belittling and the reminder that if this doesn't work I'm SOL because she doesn't want to give me a higher script.  Just doesn't want to.  Doesn't feel it's necessary. 
Went so far as to lie to me about the maximum dosages; I checked with a pharmacist, and online, and my therapist.
And well, adderall is not working well enough but goddamnit it has to! It's all I can do!
Then the Rx runs out and to refill I have to talk to my PCM and so I just go off All Medications Completely
Which any doctor or person who has taken a mood stabilizer can tell you, 
Is a Bad Idea™️.
And apparently, it's my Trauma Season.
It was trauma Month (November), but I'm realizing a pattern between this winter and last:
At the end of October, start pushing away from everything and everyone. 
November: trauma month! I don't know what happens here because my brain DUMPS IT ALL it is a depressive haze
In November, Stop taking my meds. I'm depressed anyway!! They're oBvIoUsLy NoT wOrKiNg! Go off them all!
December: proceed with depressive haze, act surprised when my mental health goes down the shitter.
So we're in January now. I don't remember when things got better-ish last year, when I finally called my PCM.  March maybe?  Spring.
Is this just my pattern until I can resolve my trauma?  Shut down for five months out of the year?
​
Whenever that time comes this year, to get back on my cymbalta, I will also request the Provigil prescription I need, in lieu of Adderall.

Provigil was originally created to treat narcolepsy, but it can be used to treat other forms of chronic fatigue.
During the summer, before I had started the Adderall, my therapist had suggested Provigil to help manage both my ADHD and my chronic fatigue as a result of cancer.
"How like a nonprescriber," my PCM had scoffed at the recommendation, before begrudgingly giving me an Adderall Rx instead.
But now my oncologist also agrees Provigil is a good choice, he has seen several cancer patients doing well on it, and he agrees it could help manage my ADHD symptoms in lieu of Adderall--
​but I don't know the recommended dose and so I feel unprepared and anxious about talking to my PCM and this thought plays out every time I think of her because the roots are intertwined
And so I become an anxious puddled mess just thinking of any PCM exchange, any notion of getting back onto my medications that level the playing field for my brain throws me spiraling.  That's why I need back on the meds.  But I can't get on them, because I need them to get on them.  Or something.  it's cyclical and nonsensical and so frustrating because I am completely, horribly self-aware of all this mess.

but I can't do the things right now.

the haziness, drifting around the house confused, at a loss, it literally adds up to hours of my day.  i have no drive or ambition or purpose i am just foggy tired existing it's day to day but it's... minimal.  i want to be a person again but i can't right now.

I'm bouncing around a couple books right now, but one of them is Amanda Palmer's The Art of Asking.  In it, she speaks of her time as a human statue, The Bride, and how in a seemingly small exchange of money for a flower from her bouquet, she would see those strangers dropping money in her vase, truly look into their eyes and see them, their raw, naked souls, as she came to life and handed them a freshly picked flower in return.
And she would blink to them.  I see you.
And sometimes, they would blink back.  No one ever sees me.  Thank you.

It's not about the comped drink and snack.  I would have happily paid for them, was ready to.  It was absolutely a kind and so appreciated gesture that really compounded the experience; love me a coffee.
But it's about the connection.  
And it's about perspective.
I could easily say, "In a moment of weakness, I fell apart in front of a stranger taking my order."
Instead, I am taking this in as... in a shared moment of transparency and connection, one human who had an abundance of positive energy was willing to share that positivity to another human who was very obviously struggling.  To the benefit of both of us, I hope.
She could easily have taken my cancer patient urge to overshare and groaned and said "what a drag this lady is" like i really bummed the conversation out.  But she lifted me up.  In such a way that... I don't know how to describe her.  Jessica is brightness.

I haven't had a normal social life in over three years, since all the Medical Bullshit and the Pandemic came to fuck me up and lock me in.
My friendships, my social life, almost all live in my phone.  That's okay.  I'm glad to have that at all.
In those three years, what used to be "gets nervous at parties" has turned into full-blown "can't articulate words" and "railroads conversations" Social Anxiety when I'm around Actual Real-Life Humans.
It takes a lot for me to amp myself up to leave the house and I'm worried I'm going to become a shut-in and I'm terrified I don't know how to stop it.
But it's these little exchanges.  These moments with perfect strangers.
(I do like hanging out with my friends don't get me wrong)
But these beautiful, unplanned, happenstance moments where a perfect stranger
can see you, and be with you, even just briefly
when you can share that humanity with just any one person
it makes you, them, everything shine just a little bit brighter.

​​if these words resonate within you, make you feel, or encourage you to think more introspectively, consider becoming a Patron!
​Your monthly donation supports Little Torch Blog and everything I am doing with it, as well as directly supporting myself and my family.

please read the Trigger Warning page if you have not yet had the chance to <3 
TW for this post: self-deprecating language

it is new year's eve.
the day begins simply, as all mornings ought to.
Cake wants to paint her nails, so I tell her to go for it.  She sets up shop on the parlour room floor, which in retrospect is the first mistake, but she follows me throughout the house, and this is where I am.

Kids follow you, fucking everywhere, back and forth, for all eternity.  And it's maddening, really.  Get out of my ass and give me space for fiiiiiive minutes, please!  But if you stop and consider the why, it makes perfect sense.  People, as a whole, are communal.  She doesn't necessarily want me to sit down and paint her nails, or paint mine with her.  She'd be delighted for me to join in, sure, but it's mostly just, mom is in the parlour, shuffling around in the mugs, grinding coffee beans, turning on the record player and thus, this is where she wants to be too.
I'm sure reading this, it makes perfect sense.  But how often do we stop and consider this, truly consider it, from the child's perspective? Particularly in the moments where we are so dang frustrated and need space? They just long for company, and parents are the best company they know when they are so small.
I wonder too, when does that fade?  How long does that last?  My parent(s) were/are  not my preferred company.  My spouse is, personally.

This is fine though, because it is a new morning, a bright new day, there's a latte in my hand and Cake wants to put on her Cranberries album she got for Christmas, and I am happy to share our newfound love for vinyl together and teach her to use the record player.  It is not grating, it is endearing.
It is about perspective.

There is a clattering.
"What the--??" she says, and looks down at our feet. 
There is red nail polish, everywhere.  Spattered where her make-shift station is, spiraling out in wet webs, oozing from the bottle that had bumped her foot and gotten her attention.
She is blurting out apologies, and I am at first, initially, angry.  She has been negligent and now there is the reek of cheap polish overwhelming us and a mess I will have to clean up--
--but it was an accident, and there are two cats and two dogs ambling about, and the youngest furry monster, our eight-month-old black cat Brisket, is darting around like a fucking lunatic, so I immediately reign it in, and am soothing her, holding her hands gently and telling her, it's okay, it's just an accident, accidents happen!  We can clean this up, easy day, let's find the acetone and cotton balls, I'll show you how.
I want her internal voice to be compassionate.  I don't want her to have the one I have, the one that screams and berates me, reminds me I'm a fucking idiot, I'm a mess, this is why I can't do things, this is why you suck Erin.  I do not want that voice to be in her head.  It already is.  She is an anxious person.  She is my clone.  I love that about her, I hate it beyond all else for her.  It sucks, being in your head like that.  So I try, so much, to be the gentle parent she needs, the gentle parent I needed.  Parenting my child has allowed me to re-parent myself, in so many ways.
​
We clean the mess. 
I love doing nail art, so I've got all these extra goodies to make my home-manicure as bougie as I can.  I have this neat stuff called Acetone Antidote from an indie polish maker, Baroness X, that is an additive which adds restorative oils to your skin and masks the chemical stink with fantastic scented oil blends.  I mix the Pistachio Macaron scent into a bottle, and it makes the cleanup less unpleasant.  I show Cake to clean in small circles instead of smearing the mess side to side, and she is ecstatic with how good of a job she's doing cleaning up.  With the power of our ADHD Hyperfocus™️ combined, we scrape the polish out of all the tiny grooves in the luxury-vinyl-planking.

This was a Good Learning Experience.  I handled my own frustration, I eased Cake's, the mess was cleaned quickly and I am pleased I have Acetone Antidote and vinyl floors; earlier in this year, Gage and his dad refloored our house, this room used to have a very janky DIY excuse for "hardwood flooring" made out of splintering 2x4s from a previous owner, that would have been an impossibility, woulda just pulled the varnish right off the floor.

In the afternoon, Cake wants hot cocoa, and I oblige her.  She picks out a mug, but instead of one of her own, she grabs one of mine. 
​
It is my favorite mug: a large one with glittering gold and black bees and large pink and gold flowers that reminds me of my days as a strike-off seamstress. The mug is probably about five years old; it is from a friendship, a work-relationship, that no longer exists, from a company that went under shortly after I had bought the mug.  She had been trying to expand her fabric shop and started offering other items with her fabric designs on them; I had specifically requested she list this bee-print because I would not wear gold and pink fabric, but I will drink my coffee from this mug.  
Nothing about this mug exists anymore; I think it is the only one in it's existence.  It is filled with memories.  I love the print, but more than that, I love the memories attached to this mug.  The way I had pleaded for the mug, the way my freelance-boss-ish had been delighted in my enthusiasm, listed it that minute, and I had purchased it right then.
Writing this now, I don't think she ever managed to launch that section of her website, her company closed before she had the chance.  She had opened it up early to her team of sewists so that when she was ready, we would be ready with physical items to show off, too.

But I didn't think of all these things, I simply tilted my head to the side and asked Cake, "Are you going to be careful?"
And she of course insisted yes, she would be, it's been so soooo long since she used this beautiful mug!

By the afternoon, my good mood has dampened.  I am agitated by everything around me for no (outwardly apparent) reason; I have too many thoughts in my head, phone calls I need to make, emails I need to check, appointments to make and commitments to follow through and--none of them need to be done right this second necessarily, but they all need to be done and it is too much and there is laundry piling up and the office is falling apart because my cats keep climbing into the fabric shelves and kicking the fabric out to make themselves more fucking cubbies, and litter I can feel cat litter crunching under my feet so I need to vacuum, I am trying to write, trying to schedule posts, trying to post to Patreon, and every time I get half a thought down, Cake is calling me, showing me something, asking me something, demanding my attention, requiring my assistance, I am trying to shuffle around the mess of the house in my ADHD-pacing-fog, what am I doing right now? I bark at her to clean up her messes, there's trash, empty Sunny D bottles and the wrapper of a meat-stick and her paper plate with crumbs that has tipped to the floor, clean up your mess, PLEASE!! it is not a request, it is a shriek.

I sink back into my office chair, plop my headphones on.
There is a shattering.
I turn my head, slowly, towards the the parlour room, where Cake stands, arms full of plastic horses.  Arms overflowing, knocking over the messes she had left out on the end table.  I stare vacantly, already knowing what just broke.
"I'm sorry, I'm sorry, it was an accident!" she says, but I am just... pissed.  Fucking livid, if we're being honest. 
I stand up, not hearing whatever she is saying, scoop up the pieces, snatching the one she has picked up out of her hand viciously.
I am aware that this was unnecessarily cruel, passive-aggressive, she is a child, I am an adult, it is just a mug.  But that doesn't matter, I am angry!  I take my stuff to the trash, look over the beautiful bees and flowers once more, then drop the pieces unceremoniously in.  I walk past Cake; I don't know if she says anything, if she looks at me.  I am angry, I am a wall.

Like in Fight Club.  I am Jack's boiling point.
​
I walk past her and straight outside, to sulk on our front porch.  It is here where I consider why I am so fucking angry over an accidentally broken mug.  It is here that the flood of memories attached to the mug come in, what all the mug meant to me.  I am still furious.  She couldn't know what the mug means, she didn't mean to break the mug, but--
I am embarrassed to write this
I want to throw my potted plants next to me onto our walkway, I want to shatter the pots.  I want to hurl them at the tree before me and scream and rage.  I want to stomp and get in her face and tell her that if she would clean up her stupid fucking messes the first forty-six times I asked her, if she had put the mug away when she had emptied it like i had asked her to, this wouldn't have happened, she would have bumped her hip into the end table and said ow and that would have been it and i would still have my mug, it's just a fucking MUG Erin it doesn't fucking matter! but I am furious.
I am angry with myself for being so furious, but that doesn't make it stop.

When I feel I have been gone too long, I go back inside, but I am still angry.  I fold a single piece of fabric, sit down on my futon, and cry a little.  I can allow myself a little cry over a broken mug, and then I will feel better.
But I don't. I am still thinking of all the mean things I could do.  I want to walk over into our parlour room and start dropping mugs, her mugs.  What the fuck is wrong with me?!?

I don't, of course, but what the fuck, brain?
... this is why I need her to have a healthier, a kinder inner voice than the one I have.  A gentler voice than the one I am wrangling with, the one insisting that to make myself feel better I need to make her feel as badly as she made me feel.
​​This is ugly and horrific.  Who the fuck???  Treats kids?? That way?
Stressed out tired parents who are at their wits' end and not thinking rationally, really.
I didn't act out these thoughts, thank fuck, but they were there in my head and that was awful enough.
What about the times we don't hold strong to our resolve, can't work past our inner voice whispering cruel ideas?
It happens.  It didn't this time.  It doesn't usually.  I hope it doesn't ever again, but y'know, it does.

​Later that night, turns out.

It is evening, we will soon settle in to watch the Pete the Cat New Year's Eve special.  (It's really cute, btw).
I have abandoned the earlier attempt to rage-clean my office, plagued by the reminder of the laundry on the couch, and sat in the living room and folded it with Gage.  Decompressed, fucked off on my phone, finished some writings.
Cake is finishing up her chores, putting away the clean dishes. 
There is a small cry of surprise, followed by--once again--the sound of something breaking.

"I'okay!" she calls out, then frantically, "it was an accident!!  I tripped!"
I peer in and see one of my decorative pieces that goes in the parlour room, that has been pushed under the kitchen table since I decorated for Christmas and had no where to put all the usual crap, is broken neatly in half.  She is picking it up, along with a shirt, holding the shirt up and inspecting it.  "I tripped on the shirt..." she is saying.

And I am trying to reign it in but it is just flowing free-form out of my mouth: 
"Are you, in any way whatsoever, aware of your surroundings, at any given point?!"
She blinks, her face screwing up, "Y...yes, I think so..." 
"I don't know, are you, because this is the third time today!!" I am spouting off, frazzled, manic, close to tears myself because I am so frustrated: with her, with myself for being frustrated with her in the first place, yes it was three things all in one day and that is terribly unfortunate but they were all accidents--
which is what she is mumbling in between the shrugs and the i don't knows, it was an accident, she didn't mean to,
and I know this, and I tell her I know but she has got to be more aware of what going on around her!  What is a shirt doing in the middle of the floor, anyways?!
Gage's voice chimes in, the shirt is his fault, it got wet when he was washing the dishes and he just absently chucked it to the side and forgot about it there...
this makes my brain ache more, because whyyyyy,  but also because tripping on the shirt that shouldn't have been in the walkway wasn't her fault, but also how do you not notice a men's shirt just in the walkway how did you trip on that, 
and really, it doesn't fucking matter.

what really matters here is that i am losing my mind, on my child, over things that are relatively unimportant, for things that were generally outside of her control.  this is not the gentle and compassionate parenting I was emulating this morning.
this is the burnt-out parenting, the passive-aggressive internal voice parenting, the it's been two years of a global pandemic, I'm immunocompromised, and my kid is an only child who doesn't get enough social stimulation from her exhausted mother, -parenting.
This is not my parenting.  But it is how I am parenting right now, and it's not fucking cool.

The other day, I saw a really great thread about gentle parenting, about do-overs. 
​We talk about how I am sorry I lashed out (both times), how yes, it is true, I am angry that things were broken, and that it is okay for me to be upset, but it is not okay for me to make her feel badly, and continue to bring up her accidents after she has apologized for them.  Parading her mistakes over her does not help anyone: it harbors animosity, encourages fear from her mother, solidifies that voice in her mind I am trying to eradicate, the one that will remind her well into adulthood, if i don't quash it, that she is a mess, she is a failure, she breaks everything.  I don't want that voice for her.  I have that voice and I do not want it for me, I absolutely cannot allow it to exist for her.

After the Pete the Cat special, we talk about our year, the good things, the bad, the events, the mundane.
"I don't believe I've been admitted to the hospital at all this year!" I announce proudly.  We cheer.

I ask Cake how many teeth she's lost this year; she doesn't know, and we try to count, but this brings up how earlier this year, in May, she had to be sedated to remove an infected tooth.  They pulled another that was going as well, and a third one had fallen out during the process, it had been so loose.
"So there's at least three!" Gage and I say, encouraging her to try to count them, but instead she is making this horrific whining, gurgling sound, one of discomfort and general displeasure to the topic.  The sounds grates on us.  You can tell us you don't want to talk about this, you can express why this is bothering you, but please for the love of all that is good at pure do not fucking whine like that.
It is getting late, and all three of us are getting agitated with one another, but no one is willing to budge; we want Cake to reminisce with us, she wants to change the topic, we want her to learn to express her feelings, she wants to shut down and go to bed.
We try to get her to wiggle her loosest tooth, we used to love pulling our teeth out as kids!  Don't you want the tooth fairy to come and leave you money, what a fun way to wake up in the new year!
It's not that we're neurotic monsters who want to rip her teeth out; it's that she leaves them in so long that her adult teeth are coming in at odd angles, her teeth are overcrowding, and she needs to get those little baby teeth out.

But she is becoming more obviously distressed with the conversation, howling that awful whine, her little body becoming rigid, pulling away from us physically.
Gage calls her back in, wraps his arms around her, lays his cheek on her head while she stares at me, unyielding.
And I begin to ask her
what are you afraid of?  what is giving you anxiety?  why are you upset?
but she is shrugging, grunting i dunno type sounds, whining.
i try a different approach, yes or no questions
are you feeling anxious?
shrug
you do know.  you know things, sweet girl.  you know your feelings.  you know your heart.  are you scared?
she wavers her hand in front of her, which means "medium."
is it about your teeth?
nod.
do you feel scared about your teeth?
nod.
does thinking about the hospital make you feel scared?
nod.
do you feel worried that you will have to go back to take care of your teeth?
whimpers, a nod, her face twisting at the thought.
babygirl, i croon, that's okay.  that's understandable and fine.  it makes sense.  it makes sense to be scared.  that was a scary experience, and your tooth, that tooth hurt you.  it is understandable to be afraid of something that has hurt you.  

the infected tooth had caused her gums to swell up, an angry abscess she'd had to take antibiotics for because the surgical date kept being postponed, I don't remember why, I just remember the agony of working between the hospital, the dental office, the referrals from the dental insurance and medical insurance and fighting for my baby to get in and be covered, …how horrific that must have been for her.

You know, I tell her, I'm scared of the hospital, too.  I'm scared of going back, I'm scared every time my tummy hurts that I may have to go to the hospital.  it scares me, too.
Her eyes light up slightly, her body relaxes against Gage's and she sinks into his arms a little bit more.
But, I continue, we have to take care of ourselves.  I know you don't like teeth stuff, it scares you, but we have to take very good care of your teeth so that that doesn't happen again, okay babygirl? 

We all feel better after this; sad, tired, but better.  As parents (and I haven't really asked him, but we both kind of shared the silence together afterwards so I feel okay writing on the behalf of us both), there was a certain agonizing sadness about realizing that our kid has medical trauma, surrounding her teeth, surrounding something we thought was so mundane, indeed, even figured she as a child would think was fun.  We thought we were being fun, but we were hurting her.  This is horrific, because we should know better. Look at her mother, I am a posterchild of medical trauma.  How did we not notice that sooner?

I don't know.  But I'm glad we did.  It may have taken months, but we got here, and now we can work through it more.  We are learning the tools that we need to open up the conversation.  She may know her feelings, but she does not know how to put them into words, or how to form a conversation around them.  She is learning that, along with us, because we did not know how to do this either.  We didn't teach her how, in May, or in the following months after the extractions.  We did not teach her until the end of the year.  And it is not a one time lesson.  We will have to continue teaching her this, over and over, as we learn, as she learns, as we as a unit lay the pathways for communication, instead of building up walls around us, sequestering us from the paths.

​She heads to bed with peace in all our hearts.  
the parenting for the day ends here, but my evening does not.

Gage and I ring in the new year quietly on our couch, streaming the ball dropping from new york, toasting with our sweet rose champagne (which he gags over being too sweet, and I choke would be better if it had honey poured into it), then resume to chatting, playing video games, puttering on our phones.  Around two in the morning, we agree we should head to bed. 
I head into the kitchen, straighten up a little.  I pick a tupperware out of the fridge, nibble on a bit of cold ground beef from burritos the night before.

From out of nowhere, nausea hits me--hard.  My mouth immediately fills with saliva.  I chew the beef contemplatively once more... nope, definitely not working for me right now.  I turn to spit into the sink, but this wave is bad, I am breathing hard, my mouth hangs open, slack, bits of beef flowing out down a stream of saliva.  Hot.  I am hot, I am breaking out all over in a sweat, completely drenched.  I think quickly to myself that I need to make my way outside to throw up, the fresh air will help.

I hear screaming.  Shouting?  It's not shrill, just one long, anguished howl, rising in volume, in intensity.
"aaaaaaaAAAAAAAAAAAAHHHHHHHHHHHHHHHH----"

I am vaguely aware of my head jerking back, looking upwards, before losing sensation all over my body and meeting contact with the ground.
cool, sweet, ground.  it is a relief to my hot, flushed skin.

"What is it?!  What's wrong?!" Gage's voice is filled with panic, his feet thundering from across the house to where I am, it's near me now: "what's wrong, what happened?"
I can feel the sweat, pouring off my face, my arms are sticky and slick under my sweater.  I cannot breathe.  It's too hot.  I kick off my moccasins.  Still too hot, but it helps.  I have the moment of panic, is this it, is this how it ends?  will i make it to the ER? 

I realize my calves are seizing up, they ache terribly.  My throat hurts.  
"That sound..." I whisper, staring at my arms splayed on the ground before me, "that sound came out of me..."
"Oh babe," he says, touching me, "you're burning up, you're so sweaty."
I feel my torso pulling itself upright, my arms peeling the sweater and tank-top underneath off in one slick layer.
"You... left a puddle."  Gage says, and we gaze at the wet image of myself I've left behind.
"I soaked through a sweater," I mumble agreeably before laying back down.  "I don't know... what happened.  I don't know.  I'm just really nauseous.  I don't know.  I'm so nauseous. There was... something."  I cannot remember, but there is the thought of something, something had to have happened, I was nauseous because I was nibbling and there was something...  
​
the something evades me.  there is just fog in the whole moment.  I try to focus on the scream.  I had felt it rising in my throat, I think?  I had been... aware of it, growing stronger as... whatever that something was...  it doesn't make sense.  I don't understand what just happened, or why.  something​.  I'm just so... confused.

After eternity, or maybe just a minute, the extreme nausea and dizziness passes, my breathing regulates.
"You need a cool shower," Gage is telling me, coaxing but insistent. "I'm going to go get you a cool shower started."  the need to do something, the drive to help in some way, any way.  it is love.
I take the cool shower. 
It helps, a lot.

My therapist tells me there is a 70/30 rule.  If you're being a decent human to your kid 70% of the time, you're doing a good job parenting.  People make mistakes.  You cannot be the best parent, 100% of the time.  You just cant.  You will make mistakes, have moments of failure.  Give yourself a margin for error; 30% of the time, you're gonna screw up.  Try not to do it more than that.  And, if you are serious about gentle parenting, you will request a do-over with your child.  You will be candid about those times you screwed up, apologize, because all humans regardless of their age deserve apologies if you've screwed up.  So many of us were taught that grown-ups are right all of the time, just because they are grown-ups.  I'm a grown-up now, and I can say with one hundred percent certainty, that's bullshit.  Teach your kids that even you make mistakes, and that that's okay.  It's part of being human.
I'll suggest it once further: apply the 70/30 rule to every other relationship.  To your partner.  To your friendships.  To your parents and relatives.  Allow people to make mistakes, they cannot be present and perfect for you all the time, but don't let them hurt you, either.  Are they applying it back?

if these words resonate within you, make you feel, or encourage you to think more introspectively, consider becoming a Patron!
​Your monthly donation supports Little Torch Blog and everything I am doing with it, as well as directly supporting myself and my family.​

I grew up with the notion that I was relatively healthy.
(Lol. Sweet ignorant bliss.)

I wasn’t even allergic to anything.
No foods, no environmental factors, no strange ingredients on shampoo labels.

The first time I ever had any sort of reaction
was during a routine CT scan at Johns Hopkins University,
where I went into anaphylactic shock and had to be rushed to the ER via ambulance.

It was my first ambulance ride, too.
Go big or go home, my body’s favorite motto.
It’s attempting to send me home in an urn, but never you mind that bit.

It was the middle of March, 2020, right at the beginning of the COVID-19 pandemic hitting America, and we were several hours from home.  I’d just turned 30 that weekend, although we didn't celebrate.  Too scared.  Rightfully, turns out.
Gage and Cake were not permitted into the hospital because of COVID (well, Gage was, but then who would watch Cake?), so they were waiting in our truck in the parking lot.

It had to be around my tenth CT at time—after all, I was there to monitor the growth of my tumors post-whipple, or whatever. I felt fairly confident walking in and doing something I’d done many, many times before. Silly me.

It had been going well. Routine. I was doing a great job of not moving and the tech or whomever came in and administered the contrast through my arm. I felt the familiar, warming flush throughout my body—but then it did not stop.  It became more intense, uncomfortably intense, hot, tingly, painful, and my tongue--

“My tongue… feels funny,” I say unsurely, out loud to the techs.

They say something over the speaker, they are coming in, wheeling me out, asking me questions, but I am already losing air, concentration, thoughts.

They pull me sitting upright and my head lolls limply to the side.
I think I might have giggled at the weightlessness of it all, so heavy and so stupidly dense and rolling and—vomit, over the side, my head convulses violently forward, spraying.

“I’m so sorry!” I manage to weep, slurring at the woman who I cannot focus on, but I hear her voice, reassuring me that they are getting help, it’s okay, you’re going to be okay, okay baby?

I hear someone demanding an epi-pen, I think the woman in front of me.
An older man’s voice retorts that I’m coming out of it and we don’t need an epi-pen, is there even one in here? The ambulance is already on it's way.

There has to be an epi-pen, doesn’t there? A rare but possible side-effect of having CT contrast repeatedly injected into your bloodstream is one day, today as it is, your body can potentially decide that it doesn’t want that foreign body injected in you anymore, and then attacks it. …violently, in my case. You have to sign a waiver acknowledging this risk every time you get a CT scan. I had just signed it fifteen minutes ago, so certainly this dude who was not at all concerned about my throat clamping shut on me knew this as well?
Evidently not.
Far be it from me to know about my risks.

“I’ve ruined your whole day,” I continue slurring an apology to the kind tech propping me up, splattered in my vomit.
“Oh no sweetheart you’re not ruining my day!”
“Yeah,” I manage, “your shoes.  And who wants their patient…” I go out for a little bit, come back “—am I, am I going to die from COVID?” I croak, suddenly panicked, realizing the ambulance means another hospital, potential exposure to a virus we do not yet understand (and will absolutely underestimate).
She assures me that I will not.
She was right, thankfully.

I begin sobbing about my baby, my baby is here. 
I can't die, my baby is here. 
​She talks to me about Cake, reminding me that I need to wake up, stay here, stay conscious with me baby, tell me about your daughter, how old is she?

I'm familiar with this technique now, of talking someone through an event;
pain or shock, panic attacks, or when you need them to not pass out because maybe then they die.
Through having abscesses packed and stitches sewn in, I've been taught to talk through pain.

The first time, when they woke me up from my Whipple in the ICU, I was so confused. 
My name?  The day's date?  Where I am located?
Why are you asking me such stupid questions?
I'm... shit, what the fuck is my name?
I'm in a hospital.  Yes, I know where I am.  I had surgery.

Even knowing what they are doing, the importance of the questions,
in the moment, it can be hard to answer.
Even knowing the answers in my head, I don't want to answer out loud.
Form words.  Use my mouth, my voice, my head.
No.
That's energy I do not have right now, because I am
(drugged out of my mind in the ICU and the doctors are whispering that they have got to figure out my meds because I am either comatose or screaming, and murkily i wonder, what's wrong with sleeping?  the meds are fine...)
No,
​i am at Johns Hopkins,
my baby is five,
and i am trying to answer
but it's a lot of work just to keep my eyes open,
just to keep my lungs moving.

CT scans are the predominant means of measuring tumor growth and changes.
With each exposure to iodine contrast, you increase your risk of having a severe reaction.
It's rare for this to happen.
Basically, it doesn't, it's just an agreement you sign the waiver for, but they have to warn you.
but it happens to me, because, of course.
I've become used to hearing "you're my first patient who ever _______"

For whatever reason, none of my medical team seems to take this seriously, except the radiologist.  
oncologists continue to order CTs, to which I continue to explain to them I cannot have a CT
to which they tell me you can pre-medicate with benadryl.

....which is true
for minor reactions
not life-threatening 
acute anaphylactic shock.

it is 
incredibly
maddening
trying to explain
to a doctor

who should know, probably,
what anaphylaxis is,
who should understand
why the radiologist won't approve of pre-medicating someone who is going to actively try to die on them,

or could perhaps share 
some shimmer
of empathy

when the fear creeps into my eyes
and my breath quickens
my knuckles turn white
and i curl inward instinctively
i bare my teeth down
i want to scream but instead it comes out
soft
passive
i don't think i can do a CT,
shaking my head.
no no no don't think i can do that.

"we have to have
some sort of baseline,
some recent measurements,"
the doctors explain,
and it makes sense.

i do PET scans.  I had them before, now that's just what we use, no CTs.  But the extraordinary amount of work it took to get my doctors to listen to me, to take me seriously about a life-threatening reaction that would be compounded in severity each time; having to relive the experience to them, reliving the trauma--
just believe me, i am incredible aware of what is going on with my body, i know when something is wrong.

i know i am not the only one here.
i am so tired of doctors not listening to patients.
of doctors not listening to women.
of men not listening to women.
of people not believing victims.

i'm tired.
i think a lot of us are really
really tired.

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

Early in the interview, Amanda is asked about the idea of hope, then and how it may have changed in the now.  She speaks of her fears that even though, while she was in prison, she knew her family and friends back home were supporting her, their worlds were (are?) so catastrophically different.  Her mother spoke to her during her incarceration about hope for the future, and it's not that she'd lost hope, but she had to also set realistic expectations. 
We can't thrive in a land providing us only with hopes and dreams of the future.  That doesn't help in the now. 
Amanda speaks of how yes, she knew her innocence, hoped justice would be served and she would be freed, but what if not?   The trust in the judicial system waning in the face of her wrongful conviction, what if she had to stay in prison for twenty-six years?  She served four before "it was all over," but trauma is never over.  we simply turn to the next chapter.  the pages behind us are still there.  we can recall significant passages, flip back to the memories and relive them.

i understand, in a different but same way,
because this fleshsack is a prison.
not the kind with bars, and a shitty cot for a bed, with guards screaming in your face because you are crying because you miss your mom, not that kind of prison.

i have been told to be hopeful.  i have been told that we will all get through this.
who the fuck is we?

at least it's not xyz.  at least you're still alive.  at least the drains were eventually removed.  at least you can eat now, even if it's limited and painful.  at least your relearned how to walk.  (at least I rented the wheelchair until my insurance had purchased it and i got to keep the fucker, since I still need it sometimes, but I digress).  

or, best,  at least it's the good cancer.
the good cancer!!
i want to scream.
there are "good" and "bad" cancers. 
you know, ones that respond well to treatment or are slow-moving,
as opposed to one that moves ferociously and quickly.
"if you have to have cancer, this is the best one you could have picked."
.... fuckery.  i didn't pick anything.

"neuroendocrine cancer is rare and progressive.  it's persistent and will always come back.  but the good news is, it responds well to treatment and moves slow!  but yours has already metastasized all over your body, it's stage iv, so yeah, there's no curing this or fixing it."
a shit sandwich on a silver platter.

what about the time they told me that my cancer had been successfully removed and somebody, somebody, put the notion into my head that I was cancer-free after my Whipple Procedure?  I had a facebook memories thing come up last week, on what would have been Thanksgiving or the following day, stating i was thankful to be cancer free.  who. fucking. lied. to me.
because they told me they had removed all the malignant masses that they had known about. Known about.  They had also found additional malignant tumors, ones they hadn't known were there.

so then, if they found more than what they were looking for, why in the fuck would they think they got it all?
and further, if it is stage iv and removing it doesn't actually remove it, because it's just there or whatever, waiting, creeping, why in the fuck would you tell someone they are cancer free?

or the first time I arrived at Johns Hopkins University for "specialized continuance of care" a year and a month post-Whipple, to be told by a surgical oncologist whose specialty is neuroendocrine tumors that in his professional opinion, my Whipple Procedure was unnecessarily invasive and didn't really... do... anything.  That the correct course of action was the injection treatment I am now on, because of the persistence of neuroendocrine tumors/cancer, they'll just keep cropping back up and you can't just keep cutting a person open to remove them, scar tissue build-up and stuff.
like amanda knox, i too have floundering faith in the system that was supposed to protect me.
... the system.  not the individuals. 
i am sad.  i don't harbor any ill feelings against my surgeon who performed my Whipple. 
honestly, i love him.  that makes it harder.
i'm sad.
i was crushed;
​now, two years after that news i am just sad.

tell me how to be hopeful.

yes, i can and do hope that the treatments work and make plans, but the thing is, there isn't "when this is over," not til we're dead in the ground.  I wrote the other day on Patreon, that life is cumulative. You don't get to come out of prison, or walk away from shaking death's hand, and just resume life as it was.  There isn't an over.  There is processing and wading through it.

there are scans every few months. 
"for what?" people ask, if I mention these.
"to see if i light up like a christmas tree." and I do. 
little radioactive blips that show where the cancer still is and will continue to be.
little radioactive cancer patient, lit like a christmas tree and not in the fun way.
the blips don't glow any larger, which means the treatment is working.
the blips also don't glow any smaller, which means the treatment isn't working as well as I'd hoped it would so even though the PET scan results are "good" and show "effective treatment," i am not good.  tell me about how this is one of the good cancers.

tell me about how to be hopeful.  
tell me how to take this information and be hopeful.

you can't.
i'm sorry, i'm not angry at you, reader.
I'm just angry.  and hurt.  and alone.

hope can feel dangerous.  a trap you lie for yourself.
Amanda compares it to a light at the end of the tunnel, but it's too bright, so her eyes are squeezed tight to keep herself from being blinded, and honestly that's a much healthier way of viewing it.
​
it's hard to feel hopeful when you're in the hospital parking garage and you hang up the handicap placard that makes you feel like an imposter.  you don't look old enough, you don't look sick enough, and yet here you are, already fifteen minutes late and yet you can't get out of your car because fuck.  just being at the hospital is enough to set me into tears.  i go every four weeks for treatment.

I 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.

this post was originally published on November 9, 2021 at 10:52pm, but was lost in a website transfer.

I am thinking of my weird-ass freeze-response.  I have no other ways of thinking of it yet.  It feels so … disingenuous? so clinical to refer to it this way, "freeze response." But I guess that's what this is.

I am thinking of a podcast where a spouse spoke of his ex-wife’s cancer journey; her changes in personality and life goals through her diagnosis and treatment, and how it eventually broke up their marriage.  He didn’t hold it against her, he knew cancer changes things; that wasn’t the part of the story he was even really telling, it’s the backstory to his own he is about to share.
But what he says beforehand caught me when I first listened: something along the lines of, how you would think, or how many people are under the impression that someone who comes back from cancer, they would find the joy in life, but how she went the opposite—she went dark.  Her mind took her to a dark place and the journey completely 180’d her.

It’s this thought that keeps coming back to me.  Again, it’s not even the premise of the episode, but it really catches onto something into my brain.  Because I too have “gone dark,” gone so deeply dark despite surviving cancer, whatever the fuck “survival” means.  It hasn’t killed me, yet.

Yet.

Don’t you have so much to be grateful for?  the collective disembodied voice asks me.  The monster of my own mind, or the one I fear others may wield above me.  The one I shirk back from, close my eyes and fawn for without even realizing.

Yes, I do.
I am not dead, yet, which means I am alive, which means theoretically, I do have so much to be grateful for.  And, I am.

Still. Going dark after you’ve been diagnosed with cancer, even after coming out alive, especially after coming out alive, makes perfect sense to me.  Because we been ripped from our able-bodies, the casing that holds together all our organs and our mind, the one thing in the physical world that we know to be truly and absolutely ours, and it has been revealed to us that it cannot be trusted.

“I want to be one of those fishbowl heads, like in futurama.” 
It used to be a joke between me and my oncologist. 

Then it became a plea, then a demand. 
I wanted him to do the impossible for me. 
​He’s a surgeon, fucking fix it.  The entire fleshsack is ruined.  Take the brain because that is the only thing good that is left, and stick it somewhere where the cancer cannot poison it anymore.

That’s not true either though.  It’s just my mind that’s worth saving.  There’s a little bitty (probably)-benign microadenoma up there, in my pituitary gland.  But that’s fine, some 20% of the general population actually has a microadenoma in their pituitary gland, they just don’t know because most of the population isn’t having their brains casually MRI’d every couple months.  But I am.  Or, I was at the time we found the fucker, but now I just have to have it done once a year. …. When was my last brain MRI?  I think that’s overdue.  I think that was due this past February.  …. Why do I think February?

It’s not that I’m not grateful to not be dead yet.  I’ve worked really fucking hard at keeping this meatprison bottom-of-the-line functioning, as has my spouse, my medical team, my friends and therapist.  Lots of work has gone into me and I am grateful for it.

​It’s just that it’s also really, really fucking hard to be okay when you really fucking aren’t.

There’s no okay after cancer, or terminal illness, or chronic illness or pain or ongoing trauma or whatever, fill in your blank.  My baseline okay is “strugglefucking.”

I’m late to appointments because I underestimate the time it will take me to do simple tasks, like getting dressed or brushing my teeth.  I shuffle around the house, grunting and heaving my admittedly pretty delicate frame around like it is a sack of earthy, soil-laden potatoes I’ve just brought in from the harvest.  But instead it’s just a bag of my own bones, same ones I’ve been carrying around the last three decades so you’d think I’d have the capacity to do that much at least.  But I don’t, I realize hopelessly as I am fluffing my pillows and pulling my quilt over my shivering, skeletal-feeling body at the end of each day, and am winded and wheezing just by the simple act of making myself comfortable.  Every evening I lay heavily, panting, catching my breath before I can rest for sleep.  Sometimes, my husband offers a hand tucking me in, but often I swat in his general area, insisting I got it I got it I can do it myself.

Other nights, I physically drag myself onto the bed, whimpering, crying a little as I ask him to please cover me up and whispering tearily I don’t want to do this anymore.

Those nights aren’t often, not anymore.  And if I really think about it, I’m grateful just for the ability to sleep in my bed.  That is another writing to come, later, when I am stronger.  When I can put into language what it was like, having to re-learn sleeping laying down, stretching the too-tight, too-raw skin of my belly flat and allowing gravity to tug at my mid-line incision, the drainage tubes tugging, my IV beeping occlusion as I try to drape my arm around the IV port, laying hopefully for a just a few soft seconds before howling out in frustration, in anguish, in pain, and having my husband slowly, carefully, but still as quickly as possible lift me upwards to make the animal-like cries stop coming out of his wife.  Guiding me back to the couch where I screamed, I didn’t want to sleep on the couch anymore – bile is rising in my throat and I am pushing myself currently because the words are taking me here, but I do not like it.  Another time.  I’m not ready for this.

And that’s fine, too.

He used to ask me what I meant by that, I don't want to do this anymore, I imagine worried that it was suicidal ideation.  Not new for me either, not this far in my life, but certainly doesn’t make it any less frightening, any more livable for your loved ones to process.  And in a way, it may be, could easily be interpreted like that.  But it’s a lot… simpler.  A lot less nuanced.  Sure, there are days where by “this” I just want to scream and wave my arms wildly, gesturing at everything, but I don’t actually mean everything.
​
I just mean … this.  This whole post, this whole ass predicament, this stupid fucking fleshsack, riddled with cancer, a genetic predisposition to monstrous little masses written explicitly into my DNA.​

​today is november first.
i wanted to launch my blog today.

three years ago, I died today.
not like, really actually died,
although i guess i came pretty close theoretically, that day,
and other times.

but who I was before this day three years ago, she died.
she didn't know she was going to wake up having died.
didn't know she was going to wake up a new person.
didn't know if she'd fucking wake up,
sometimes.

six weeks in the hospital. eight days were in icu.
it was six months before i was allowed to eat food
food. f o o d. no food. for six months.
i was fed intravenously, TPN, bright yellow "banana bags"
but i always thought they kind of smelled like french fries

and there was a tube, and formula feeds in my tummy,
for awhile.
the memories get hazy.

the whipple procedure cuts you all open and cuts your guts out
and then reconnects your digestive tract and
my pancreas leaked
into a bag I safety pinned to the waist of all my pants so that the tube wouldn't tug
for like, a really long time.

it stunk.
and my iv tubes would beep all through the night
and the word "occlusion" was both a curse and
a joke.

three years ago today, I died, but I came out,
or at least, I haven't died all the way yet.

i wanted to launch my blog today.
but the patreon hasn't been set up and the buttons direct weird and the photo menu won't populate why does everything populate except the photos and i haven't actually written my story yet i was going to launch with my story but this is coming along pretty cool and the ideas are coming along even faster and goddamnit this is so fucking stupid why won't the photos work, all i want to do is change a goddamned photo and god i am tired but i really want to launch my blog today and it's so late it's not even going to be read by anyone tonight anyhow but hey!
i did make it public, so even though no one has the address, i did *technically* launch it today!

and when i felt myself saying that last bit out loud to Gage, i could feel the smile creeping into my cheeks.
i could see that same smile flash in his eyes, in the dark,
where his face immediately lit up from below from his phone,
and he said "what's the site again?"
and i was suddenly on the floor, sitting against the edge of the couch,
leaning into him excitedly
waiting for the screen to load

and there was my blog, my beautiful homepage
and my stupid button that redirects to the wrong page but meh i'll fix it later
look how it's the perfect shade of pink?

and i am so exhausted but

it's november first,
twenty twenty-one.
three years ago, a version of myself died,
and i managed to launch my blog today.