So, this is dying…

Hi. 
The story of my experience with terminal illness began on Dec 12/2023. 
Well, I mean, I guess it ACTUALLY started way before that but what you don’t know can’t hurt you. Or rather it can hurt you, you just aren’t aware or whatever. 
Aaaaanyway, let’s just start this story in early Sept 2023. I had thought to myself that it seemed like I had pneumonia. As someone who has had pneumonia many times throughout my life, I was like, yeah, mmhmm, definitely seems like pneumonia. 
So, I did what any intelligent and rational person would do and I went online and booked a zoom appt with a random doctor in my city as my family doctor had recently retired and I was just floating physicianless out in the ether. 
Doctor asks me what my symptoms are, I tell them, DOCTOR ASKS ME WHAT I THINK IT IS, I say, pneumonia, they agree, prescribe me Zithromax or whatever the fuck. Pretty sure it’s Zithromyacin but apple autocorrect is like, no, so yeah, I dunno I guess. A preemptive “fuck you” to anyone fixing to be like, “Well, actually, one is the generic of the other” or some variation of that. Just, stop. 
Point is, month went by, guess fucking what? It, uh, wasn’t fucking pneumonia. Turns out, I AM NOT A MEDICAL DOCTOR. Shocking. Someone call and cancel the autopsy. She died of shock. Shock is what killed her. 
Well, either that or the PAH or the pulmonary embolism or the Cancer. 
Oh, sorry. We hadn’t gotten there yet. 
So, yeah. December 2023 my ma finally gets us a family doctor. I have my first appt on December 12. I tell her all my symptoms. There was a lot. Like fucking many actually. All the color drains from her face and she says, “so, I need you to go to the emergency ward of **name of hospital in my city** RIGHT NOW. Do NOT go home and get a bag, do not stop for food, etc. GO NOW.” 
Word. If I hadn’t taken her advice, I’d be sitting here dead right now. Like in an urn or whatever. Not some Weekend at Bernie’s fiasco. But yeah. Yes. This woman saved my fucking life. Or what was left of it anyway. 
They get me in and run mad tests on me. Like a stupid amount of tests. A week in, I am sitting in my hospital bed, eating butter chicken with my mom and talking about how they still don’t know what’s wrong with me. Just then, three doctors walk in and ask if it’s a good time. I tell them that yeah, of course, what’s up. They proceed to explain to me that I have Pulmonary Arterial Hypertension. The word “arterial” is what makes it terminal, progressive, incurable, and rare. How rare? Less than 1% of the world’s population has it. It’s like winning the reverse lottery. 

So, for those of you who aren’t familiar with what it is, and I’m going to assume that’s probably a lot of you, because even skilled surgeons and oentire hospitals filled with medical staff, you name it, don’t know what the fuck it is.
 So.
 Here’s what the fuck it is.
The vessels in my lungs are scarred and constricted. My heart has been trying to work overtime, or being forced to work overtime, to get blood into them so that my lungs can, you know, send oxygen to, like, me and all of the other organs in my body. But no matter how hard my heart has been working, it hasn’t been succeeding in its endeavors, so my body has just been kind of, like, shutting down and yeah, getting sicker and weaker and more and more broken internally, and I didn’t know.
And as I said, it’s progressive and incurable, which means there is nothing they can really do at this point. By the time it starts presenting to the degree that it had been, like to the degree that someone would be like, “I should probably go to the doctor,” like physically go, you know, not book a Zoom call, um, you’re kind of in a really bad spot at that point.
And I was given six months to three years at that point.
I started crying and then immediately stop.
And I was like, “I’m so sorry, I’m so sorry.”
I’m apologizing to the doctors and my mother. And they’re like, “No, no, that’s a normal reaction.”
And I’m like, “Yeah, no, it’s, I just…”
Because here’s the fun fact about me. I get so uncomfortable around crying that I get uncomfortable around my own crying.
And also, in fact, I’m not someone who cries typically when I’m sad.
Like, I don’t cry when I find out someone has passed away unless I’m with other people that also knew the person because I can feel their sadness and I can also see their sadness, and that breaks my heart, and makes me terribly sad.
Like I basically absorb whatever level of sadness is going on around me, but I don’t really get sad for myself.
But I guess this time I did.
Or maybe it was because I was sitting close to my mom and I was absorbing her sadness.
I don’t really know.
But apparently the good news, guys, is that whatever had taken place there, totally normal reaction apparently, so.
Look at me. Pulling off looking like a normal person in public.
Yay.
Small wins, right?

So, fast forward.

Actually, you know what? Not fast forward.

I got out of the hospital right before Christmas, and they were kind of weird about letting me go, but I was just like, “Can I please go home for Christmas?”
And I went home.
And yeah, Christmas sucked that year.
I literally got out like the day before Christmas.
And the pharmacist across the street, who has since become like a huge part of my life actually, not in a hanging out social sense, but in a “much like my doctor, this man has literally saved my life” sense. 
How?
Great question. 
Well, I was already on social assistance but I wasn’t on disability at the time.
When I got out of the hospital, one of the many, many medications that I have to take, and incidentally the most important one at that point, wasn’t covered by EIA.

And also it was the day before Christmas.

So.
The pharmacist, getting my long list of prescriptions from the hospital, phones me and says, “Hey, I’ve got a bunch of prescriptions here for you.”

And I’m like, “Yeah, I’m really, really sorry about this, but after trying to get ahold of my worker and then speaking to people at EIA, they aren’t gonna help me with my medication. So I won’t be able to get it because I can’t afford it.”

He’s. like, “You literally need it to live.”

Like, he’s looking at what I have and what I’ve been prescribed and he says, “If you don’t get this medication, you will die.”

And I’m like, “I am WELL aware of that, but apparently the non-medical staff at Employment and Income Assistance disagree.”

So he’s like, “Well, that’s ridiculous.”

And I’m like, “I know.”

We get off the phone.

I go into my room and start crying. Again. Like, ugh. 

Then, at like 8 o’clock that night, Christmas Eve, we get a knock at the door.

My roommate says it’s for me.

I go to the door and it’s this little Asian man standing there with a bag of medication.

Turns out he owns the pharmacy.

And I’m like, “I can’t afford this.”

And he’s like, “Don’t worry, it’s all covered.”

And I’m like, “How?”

And he says that after we got off the phone, he called the hospital relentlessly trying to get ahold of someone connected to my medical care because a lot of people had already left for the holidays.
Eventually, he and my support nurse spent the day hammering EIA until they finally got people on the line.
And every time somebody said they couldn’t help, they basically responded with, “Well, somebody in that building CAN help, and we’re not going anywhere until someone does because this patient could die if you don’t approve this medication.”

And I’m like, “Wait. They approved it?”

And he says, “Well, they approved most of it. Not the most important one. That one still got flagged. But they assured me that once people return after the holidays, somebody will probably be able to work around it.”

Then he hands me enough medication to get through until after New Year’s.

And he’s like, “Don’t worry about it. You need this.”

And I’m just staring at this man like…

So let me get this straight.

You spent your entire day fighting for medication for someone you’ve never met before.

Then, when that still didn’t fully work, you just GAVE me the medication anyway.

And then you walked through the snow at 8 o’clock at night on Christmas Eve to personally bring it to my door.

And he just looks at me and says, “I don’t have to have met you. You’re a human being. You’re sick. You need help.”

And listen.

If you think YOU hate human beings, you have not even sat in a room with a person that hates human beings until you’ve sat in a room with me.

But I’m telling you right now, in that moment, a massive portion of my faith in humanity was restored.

Albeit fleetingly.

And quasi temporarily.

But still.

In that moment?

You have no fucking idea.

So, a few months go by and I am checking the internets every single day to see if there’s any developments whatsoever that might potentially help me because turns out, contrary to popular belief, I don’t actually want to die. 
It’s just something that I say all the time and think about a lot.
Anyways.
Three days before I have back-to-back appointments with both my family doctor and the lung specialist, the first appointments with either since my diagnosis, I see online that there is a brand new drug for PAH.
It was only available in the U.S. and was still in the process of being approved by the FDA.
So I’m thinking, probably about a year from now that drug is gonna make its way up here and then there’ll probably be a trial period or something and I should definitely try to get in on that. 
I see my family doctor first.
She hugs me.
And I’m like, okaaaaaaaay. 
She’s  like, “Well, now that you’re here and you actually survived that whole scenario, I can be honest with you…. The day I told you to go to the hospital, I did not think I was ever going to see you again. That’s how close to dying you were.”
Wow. Alright. Well then. 
So, speaking of dying or NOT dying, this drug...
She promptly informs me that she doesn’t really know anything about it but my lung specialist would be the person to ask.
Perfect.
Later that same day…
“So, like, this new drug or whatever… 😬”
And he’s like, “Wait, how do you even know about that?”
And I’m like, “Because I look online every single day.”
He’s like, “Wow. It was literally announced like three days ago.”
And I’m like, “Yeah, so I’m assuming there’s gonna be a drug trial.”
And he says, “Yeah, probably around the end of the year.”
And I’m like, “Do I qualify? And if not, is there anything I can do to qualify?”
And he’s like, “At the moment, no, but you could. You’re just need to do this, this, and that.”
And I’m like, “Okay.” 
I leave his office and promptly do this, this, and that. 
About a month later, I spend around eight days with a pretty severe migraine headache and some other assorted nonsense that was kind of looking like I was in the process of having a stroke or stroke related mayhem. 
So finally, on day eight, I was like, okay, yeah, I should probably go to the hospital.
I get there and they immediately determine I’m not having a stroke. 
Instead, door number two. 
Guess what it was instead. 
No, guess. 
If you guessed pulmonary embolism, you guessed correctly. 
But to determine that, they had to give me a CT scan, during which they found a mass on my throat and lung.
So for the next several months, they do some pretty extensive testing, and they’re like, “Everything’s coming back inconclusive. It’s probably nothing. I wouldn’t be too worried about it,” and so on. 
So I wasn’t. I wasn’t at all worried. Why? BECAUSE IT WAS PROBABLY NOTHING. 
Then on my birthday, just as we’re being seated at the restaurant where my mother and I eat every year on this day, my phone rings and my mother excuses herself to the ladies room. 
I look at the call screen. 
Private number.
I never answer private numbers.
However, I had a friend temporarily staying at my house, and he is someone who would occasionally call from private number, so I thought I should probably make the exception. 
I answer it.
It’s not my friend.  
It’s the cancer surgeon from the hospital that’s been handling the bulk of the tests regarding the aforementioned mass. 
He says, “Oh, is this *my name*?”
I go, “Yeah.”
He goes, “Wow! So, we have been trying to get a hold of you for quite some time now.”
And I’m like, “Word? Why? What’s up?”
He replies, “Normally I wouldn’t do this over the phone, but because of how long it’s taken us to get ahold of you, I need you to understand the gravity of the situation.”
“You have cancer, and you have a lot of it.”
“We need you back in here ASAP, and we need to get you scheduled for surgery immediately.”
And once again, coolant starts leaking from my eye holes. 
My mother is now weaving her way back through random families and I, trying to manifest instant composure, awkwardly thank him and hang up the phone. 
My mother, sitting back down at the table, sees that I’ve just gotten off the phone. 
Sees the tears.
Being the amazing woman that she has always been, she says, “Oh my God. Oh no, honey, what’s wrong? Is it one of your friends? Did one of your friends get arrested?”
I sputter laugh. 
“Uh, um, no. No, Mom. Everything is okay.”
Because I was painfully aware that it could potentially be my last birthday and I didn’t want to ruin that memory for her.
So I, instead, just sat there. 
Eating lunch with my mother.
Unfortunately, directly after that lunch, I had a doctor’s appointment with our family doctor.
One thing you should know about my mother? Since this diagnosis she has come to and been present for every single one of my appointments. Bar none.
She doesn’t drive.
She’s almost 70 years old.
At the point in her life where I, her only child, should be giving HER my seat, helping HER up, accompanying HER to doctor’s appointments, she has instead been busing and cabbing through every type of weather imaginable, at any hour of the day or night, to attend my myriad appointments with me.
People are always like, “Wow, you and your mom must be so close. I’m so jealous.”
We weren’t always this close actually. 
In fact it has been pretty tumultuous.
Apparently the secret ingredient is that at least one of you, preferably you I guess because I can only really speak from experience here, needs to be dying. 
Rapidly if possible. 
It will fix what would have otherwise taken years of therapy. Like more than ten. 
Anyway.
We get to the doctor’s office, and the first thing the doc asks is, “So, have you heard anything back from the hospital that’s been doing all your tests?”
And I say, “Yeah.”
And my mother looks at me and goes, “Oh, you have? What did they say? When did you hear from them?”
And I go, “Oh, I actually heard from them about two hours ago.”
And my doctor’s like, “Okay…”
And I’m like, “Yeah, I apparently have a whole bunch of cancer.”
And they both immediately go, “Oh my God, I’m so sorry.”
And I’m like, “Yeah, no, it’s okay. It’s fine.”
Because at that point I’m already operating under the knowledge that I was initially given six months to three years maximum expected lifespan when I got diagnosed with PAH.
Since then: pulmonary embolism, shit ton of cancer.
I mean… it sucks but also? 🤷🏼‍♀️🤘🏻
So.
Fast forward about a month and a half later and I’m scheduled for the eight-hour cancer surgery during which I could absolutely die.
Apparently, for most people, it’s considered very survivable.
But my surgeon and the hospital I was originally supposed to have the surgery at didn’t really understand what PAH is. 
Thank fuck for the anesthesiologist I met with beforehand.
When we first sat down, he was very confident.
Like, “Oh yeah, I do these surgeries all the time. I’m usually the anesthesiologist for these procedures. Very routine,” blah blah blah.
Then he actually opened my medical file.
And I watched this man’s entire demeanor change in real time.
He stammers out, “Oh. Wow. Okay. No, I can’t do this.”
“You are going to need a cardiac anesthesiologist, and we are going to have to run extensive testing to determine whether or not you can survive this surgery.”
And I was just like, THANK YOU.
Thank you for being the first person in this building that actually fucking gets it.
I then look at my mom and go, “Okay, so I’m not having my surgery at this hospital.”
“Either I’m having this surgery at the hospital where my lung specialist, cardiologist, and everybody else involved in keeping me alive actually works, or I’m not having it at all.”
And my mom made sure that happened.
The morning of the surgery, we get there insanely early.
My tiny mom is following me from room to progressively smaller room. 
And every single time somebody comes in to introduce themselves, they look at my mom and go, “I assume this is your mother?”
And every single time I go, “No actually, I have no idea who this woman is. She just keeps following me around and I was hoping somebody here could deal with that.”
And my mother’s like, “Stop saying that.”
And I’m laughing.
And the anaesthesiologist goes, “Well, at least your sense of humor isn’t dead.”
And I’m like, wow. 
Appropriate. 
So, I go in for the surgery.
And yes, I survived.
Obviously.
Actually, nah. I died and I’m telling you this story from beyond the grave.
Whatever makes this monologue more bearable for you honestly. 
I get wheeled into the ICU. Hard lines, IVs, oxygen, a catheter, the whole deal.
These flying monkey, minion fucktards keep trying to give me opiate-based pain meds. 
I keep saying, “Do not give me opiate-based drugs.”
They insist that I was in shock and didn’t know what I was talking about and that I would need them for the pain.
 I was like, “Yo. Maybe YALL would need them for the pain but I’m just gonna sleep.”
They’re  like, “No, you need opiates.”
And I’m like, “I don’t though.”
And they’re like, “Say perhaps to opiates.”
And I’m like, “Listen, I don’t know who’s paying you people to say this… Oh wait. Yes I do. Big Pharma and the government. Tell them I said, nice try but no gracias or whatever.”
Apparently they didn’t speak Spanish though. Or perhaps they did. Definitely no hable Englais. That much was clear because after about a week of waking up to being medically roofied, I discharged myself.
Yeah.
I literally ripped out the hard lines, the IVs, the oxygen, the catheter. 
I’m kidding. The catheter had already been removed a few days prior. 
Anyway.
My throat was cut from one ear almost to the other.
I looked like I really pissed off somebody in the mafia who was just incredibly bad at checking their work. 
I open up the giant drawstring garbage bag thing they give you when you get admitted to the hospital, and I start putting the pajamas I had worn there the morning of my surgery back on followed by my winter jacket and boots. 
I then start throwing all the flowers and teddy bears and assorted gifts I’d accumulated during my stay there into the bag. 
One of my friends had sent me a butt candle.
Now, I know what you’re thinking and no. 
That would be weird.  
It was actually just a candle shaped like a butt.
Like an entire ass.
With the tops of the legs included, just so you know for sure that yes, it is in fact a butt.
Anyway.
I throw all this stuff into the bag and start clomping toward the elevators. 
This nurse comes running after me shouting, “Wait, wait, you can’t leave.”
I pivot around to face her and growl, “Why not?”
She says, “Well, you can’t leave without your prescriptions.”
Seething with white hot smouldering abhorrence I reply, “Prescriptions for what?”
And she goes, “Hydromor…”
Now this woman must be very good at reading facial cues because she literally shut all the way up mid sentence. 
I turn back around and continue rage stomping my way out of the hospital.
Which, incidentally, is attached to a church.
And guess what time of year it just so happened to be?
If you guessed right before Christmas, you are one astute motherfucker.  
So I make my way outside and sit down on a bench in front of the church.
I then pull out a pack of cigarettes that has been sitting in my purse for ten days getting dry as fuck.
Now, just to recap very quickly:
My throat is cut from one ear almost to the other.
I no longer have a thyroid, parathyroids, lymph nodes, or assorted surrounding anatomy.
My lungs are trash.
My heart barely functions.
I have just ripped out a series of medical devices that were potentially keeping me alive.
And then I light a cigarette.
Now.
I have lived a fairly long and very interesting life.
To say I have lived with very few regrets would be an understatement.
However. 
If I HAD to pick something that I perhaps maybe possibly regret doing?
Lighting that cigarette? Top, middle and bottom of that list. 
At that exact moment, a mother walking past the church with her two children looks up, sees me sitting there, and physically shields her children away from me.
Like, bitch. Do I look like I’m in any condition to be attacking groups of three? 
Anyway.
I’d like to tell you that’s where the story ends.
Realistically, it pretty much is.
I’m not even going to get into all the insane shit that’s happened since then because if you want that, you can just go read my posts in Chronicles of Narcia.
Even if you don’t want it. 
Digressing heavily aaaaaaaand we’re back
But I WILL tell you one last fun fact.
The cancer and the subsequent cancer surgery knocked me out of the drug trial.
And now the drug is fully approved and available in my country.
But not really outside the province that manufactures it.
Which is not the province I live in.
And the only people outside that province who can access it are people who were already part of the drug trial.
Which I no longer was.
And no public or private insurance covers it because the medication costs approximately $30,000 a month.
Which, to be fair, if you were in line to die right now and had spent the last 2.5 years watching your health decline rapidly, basically immobile, would you pay $30,000 a month to get seven to ten more quality years?
Exactly.
Me neither. That is ludicrous amounts of ‘fuck you, fuck you, fuck you, not you though, gross, but you and for sure you’ money. Who has that kind of skrilla just all superfluously laying about? 
Lizard people. 
However, if you could just take it for zero to no dollars? I mean yeah. Sure. If my mom will stop crying every time she sees me then I’ll do it I guess. 
But I no longer have that option so it’s whatever.
Life.
Life be fuckin life-ing. 
Well.
Not for all of us, I guess.
Anyway.
That was my absolute longest possible way of explaining why I guess I gathered all of you here today.
So.
Tag. You’re it or whatever.