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?
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.
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...)
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.
Then I am being carted out on a stretcher, two men taking over—one of them in particular makes me feel safe, comforted. I tap his wrist and whisper, thank you.
The sun is blindingly bright,
and for a moment I can hear Cake’s voice,
but my mom-ears perk up instantly.
My hand lifts unsteadily into the air, the direction where I think her voice came from, I see a blur of Gage holding her up and him calling out, We’ll meet you at the hospital!
before being loaded into the ambulance and taken to the emergency facility down the road.
i've never been in an ambulance before
i remember trying to take in my surroundings
hearing the siren and
bemusing to myself that the siren
was for me
i am in the ER,
and i sleep.
not allowed in this building either, Gage and Cake grab lunch, wander around a park, he buys her a skateboard.
When I am cleared,
we pile into the truck
and make the long drive home.
That evening, Gage and I lay in bed and share a dry, hollow laugh.
We comment that we should be more fucked up by today’s events,
and that will probably come tomorrow morning,
or next week,
but for now we are just going to stare at the ceiling in the dark
and think, of course,
of course my body,
which has never had an allergic reaction
to so much
as an iota
of dust or dander or gluten,
would decide a routine,
something I will assuredly need more of in the future--
that’s a good time to go into anaphylaxis and try to die.
What a weird fucking adventure, let us never have to go on it again, we laugh.
"Anaphylactic-type reactions to iodinated contrast agents are rare, accounting for 0.6% of cases with only 0.04% considered aggressive. Almost all contrast reactions that are life-threatening occur within 20 minutes of intravenous injection."
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
acute anaphylactic shock.
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
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
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 think a lot of us are really
if my words move you, if you find yourself wishing you could help in some way, please, 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.
new to the idea of crowdsourcing, not really sure what it's about or why someone would crowdsource? here's a little more information :)