The fleeting moments of health, they’re not what I want to inspire you to chase after, I mean, I don’t really want to inspire you to do anything.
Inspiration pieces aren’t my favorite things in concept, but based on the subject matter that is likely to follow, I can’t really control how you interpret my words, experiences and overall approach to life.
I do want to write from the heart though, for the first time in a long time it feels.
Honesty and vulnerability is something that if you know me, I am pretty open with, so this note – at least from my perspective – doesn’t divert much from just sitting down over a coffee and letting me fuck you up with my often obscene retrospectives.
So, let’s jump into it.
Pain is crazy – well not pain but a long-term kind of difficulty, complication after complication, feeling your body attack itself. It’s crazy because your mind doesn’t go anywhere.
Actually, that is sort of true, but also not.
Your mind doesn’t focus on what it once did before, you’re not worried about the little things anymore, it’s the energy that would be spent on those things, that energy just gets reallocated.
Certainly an endorphin-based reaction – this is already getting cliche – but I am getting somewhere I promise.
Look, having spent over 22 days in consistent pain, heavy doses of medication, and just questioning what was really happening to my body all while keeping track of whatever the next nurse was trying to dose me with (I have been in critical condition and corrected someone on my meds). I think I understand where the strength that people are always surprised about comes from.
It’s not a choice of having strength, your body won’t let you just lose it, some people do lose strength in certain places; mentally, physically, even just the strength to eat sometimes.
I can see that.
For a bit of time, about my second week – I was in intensive care being monitored for stroke – I lost empathy.
Well, it could have been the insane amount of steroids (something like 40mg of prednisone twice a day) but I completely threw away what I consider to be man’s most admirable traits, empathy.
I stopped caring for how my family felt, I just didn’t have time anymore, my energy was somewhere else, and unfortunately it stayed that way for quite some time after.
I think that’s the strength I lost.
I usually spend my energy on the things around me, the images, the people, and trying to understand them. That’s where my mind works, but for the first time in my life, I felt like that energy was gone – completely unavailable.
I was just fighting – to be comfortable, to feel any less amount of pain than that last second I had when I took that breath and the pressure between the approximately 9cm of a tumor was crushing my lungs between the pulmonary embolisms. The sharp pain I felt pretty much any time I moved from any number of blood clots I had blocking major routes in my body.
Keeping track of how much blood I was coughing up – whether it was general bleeding or from the pulmonary embolisms sitting in the base of both of my lungs – it didn’t really matter.
So the energy I once spent on things I felt so important – remaining empathetic, creative, kind, thoughtful and inspired – they were gone.
—Sorry About That—
Things change so fast though, the science is amazing, the doctors, nurses, everything – truly unbelievable.
What a Fucking Blessing
I’m not a religious guy – at all – I honestly think we are all just a random pile of cells that sometimes happen to coincide genetically because sometime a couple million years ago something took a shit,
But what happens in a hospital every day, when a patient is really sick, is really fucking amazing – and yes this is a godforsaken socialist Canadian hospital where I will pay no bills for my massive 40+ day stay.
Now That is a Fucking Blessing
Besides the point – Let’s get back to my self-indulgent attempt to sound cool while dumping a months worth of cancer filled emotion on a sheet of paper.
It’s easy to lose track of things, I guess that’s was what I was getting at originally. That when you’re in such a state it’s gone. Only after – for me that was about 22 days after my second admission to the ICU – that I stepped outside for the first time, I walked without oxygen and stepped out fucking side.
Holy Shit – It really hit me – I hadn’t stepped foot outdoors in 22 days.
It was amazing – wind, sun, temperature – these things I didn’t even think of when I opened the door 75 meters back – they hit me when I got to the patio of the 16th floor of Princess Margaret Hospital beneath this odd oversize ultimate frisbee course of an art installation covered in chainmail.
It was like I had just gotten my energy back, the things I prioritize emotionally, I now had the energy to think about, they came back. That has never happened to me before – such a rush of endorphins, such a shift in perspective and priority. It wasn’t necessarily overwhelming, but a turning point worth noting.
To put things into perspective, let’s break this story and jump into a bit of a timeline of events here – I’ll do my best to remain accurate date wise.
Day One – May 25
6:45 am – Arrive at Mt. Sinai ER (uber) Major Swelling in left arm – thought I pinched a nerve in my shoulder finally (I’ve had chronic shoulder dislocations for the past five years so it just made sense)
8:00 am – Nurse Practitioner asks me of any history in my family – I mention my dad is just recovered from lymphoma and my grandfather had leukemia (just another fucked up anomaly)
8:45 am – They’re running chest x-rays and I am kind of pissed because I think it’s my shoulder.
10:00 am – Nurse Practitioner rushes me for CT scans – asking me about history with blood clots – seems like she knew what the fuck was up – pretty intuitive if you ask me.
10:15 am – “we found masses on the lymph nodes in my chest” – Nurse Practitioner says to me in the half torn down, construction riddled hall of the Mt. Sinai Emergency wing.
I’m fucking flipping out at this point, between the pain in my arm – which we now knew was from blood clots, not a pinched nerve and the discomfort of knowing what masses on my lymph nodes meant from the past few months of my dad’s recovery from Hodgkins Lymphoma – that’s fucked up.
12:00 pm – Parents Arrive, I am still just sitting around in the hallway waiting to hear whats next.
4:30 pm – I get a room in the ER, sit in the bed and the nurse practitioner comes in, sits on one knee in front of my family and simply says “it’s not looking good”
What the fuck – it’s not looking good – that’s something you tell someone when they’re fucking dying – right?
So that was a shitty hour or trying to understand what was happening now – with some junkie in the hallway yelling at every nurse she could see to give her some fucking Percocet, and my family and I just trying to figure out why I haven’t even spoken to a doctor all day – but somehow – it’s not looking good.
That was pretty much the worst of the whole thing, to be honest.
Could have done without that – but its fine.
It wasn’t much later that I had DR. Tyler, Resident with Dr. Bells team at Mt. Sinai on my service – they came into my room and offered my their suspicions of my condition – they helped us understand things as quickly, professionally, and sensitively as possible.
I felt like it was in good hands – which in retrospect – really didn’t take long at all.
For the next few days, I was put on blood thinners for the clots, and they were just organizing when and how they will be able to run my biopsy so I can be discharged, go home – as if.
A biopsy was next week – they needed me in the hospital – I was still at risk of a clot breaking loose, moving to my brain or heart, too much risk.
I stayed for 6 days – stabilized – went home.
Got home, two days coughing up blood and injecting blood thinners into my belly – called the Dr.
“Think I should come back? I’m coughing up some blood”
“Yea probably a good idea”
Blood clots spread – from my left side (left corroded, left lung, and arm) to my right lung.
New CT showed pulmonary embolisms in both lungs and some fluid in my right.
This must have been June 6th – got a bit of a vacation from the hospital – it was nice.
It was when I went to take a shower that things got really bad, I couldn’t breathe.
I mean, COULD NOT FUCKING BREATH.
I actually pulled the emergency cord and sat on one of those chairs with a hole in the middle that those geriatrics use in the shower in case they accidentally shit themselves.
There must have been about 9 nurses surrounding me, not knowing what to do, then my angel her name sounded Israeli and she was hilarious, but she came, got me in a chair, hooked me to oxygen and took care of me for over 2 hours while I tried to learn to breathe again.
I didn’t breath on my own for about a week after that.
We can push forward a bit here – there are some gnarly parts of my health story that, well, I can only really say a couple things about, so here they are.
Thank you so much, Dr. Bell and team and Mt. Sinai Hospital, you took my expectations of what any health care system could, would or should be and shattered them. Your extraordinary care, attention, and kindness will always be with me, this brief thank you is not enough, though I am certain we will cross paths again soon and we can raise a glass.
Likewise to you Dr. Monteiro – this guy did an open neck operation on me after what I only can understand to be what was well over 24 hours of surgery prior. I wasn’t urgent, odds are I could have waited, but for some reason, these two doctors felt I was important enough to go well beyond their call of duty and perform my biopsy.
I want to appreciate them more appropriately than just in this small sliver of texted wedged between my emotions and timeline of events so I will just leave it at this.
It is people like them that should inspire all of us.
Okay so, let’s get to the real point here – It took some time – I spent a couple more days in the ICU waiting for my diagnosis.
It came… well it sort of came, I had lymphoma for sure and they were going to start me on chemo right away, they had the bag in the ICU – literally about to plug me the fuck in.
Then the Dr called.
Don’t use that chemo.
They were going to use a normal protocol for general lymphomas, CHOP Chemo, that’s standard.
But, if they had, they would have set me back some time, turns out I wasn’t to be treated as lymphoma.
We got my diagnosis – T-Cell Lymphoblastic Lymphoma, a type of lymphoma that is treated as leukemia, it’s complicated – really fucking complicated – but they have a protocol for it and it’s completely treatable.
That was like a scene out a medical drama show though, a real down-to-the-wire scenario.
It could have set me back a bit of time in my regular treatments
My doctor did one hell of an amazing job.
Also, turns out, they’re admitting me to the third best place on the fucking planet to be treated for this specific diagnosis (once you’re in the top three cancer hospitals in the world, rank doesn’t really matter though).
So, here I am, Princess Margaret Hospital – 6 doses of Cyclophosphamide, two doses of vincristine, countless CC of steroids, blood thinners, L-A-S-I-X and a generously donated transfusion of O- blood later.
I feel good.