So, I haven’t written here in a very long time, for a while that was simply because I just didn’t have much to say, things were seemingly going well and I was looking forward to getting back into the swing of normal life, or whatever was available of it with all that’s happening with COVID-19.
When you get a bone marrow transplant, there are constant follow-ups, count checks, blood transfusions if they’re needed, and at day 60 the big test, a bone marrow biopsy to check how things are really going. It is important to understand that at this point, on day 60 I had a 99% chimerism, which means that 99% of the peripheral stem-cells circulating in my blood were from my donor (based on the last chimerism test that was made).
I walked in on day 60 on top of the world, everything was amazing – really, I have never felt so good to be in the cancer center in the entire two years I have been coming here. The general policy for most of the staff at the hospital, much like most hospitals is to avoid getting patients hopes up, doctors have to act as realists, but on this day it was literally high fives and big smiles from everyone. I got my biopsy which the doctor told me was the juiciest marrow he had ever seen – a textbook specimen, how much more positivity could be surrounding me in this moment.
Two years, and finally I felt like I was getting a breath of fresh air, though nothing is ever certain until we get the results back I along with everyone else on my medical team felt incredibly confident even though it takes about 7 days for a bone marrow biopsy to come back with full results.
7 days of waiting, but for the first time while waiting for biopsy results in my like (and there have been countless times) I felt like everything was going right.
Right on schedule I got the email that there were results available in my online medical portal and without hesitation I opened them confidently as if nothing could possibly be wrong.
Fuck, was I wrong.
As I scrolled through this list of cell pathologies and tried to understand what I was reading the walls rose around me, it was almost as if my body no longer was there and I was just a head attached to a heart moving faster than a v12 engine.
Everything was crashing around me, none of this made any sense – I went back and compared with previous reports, maybe they made a mistake and double reported, this was impossible.
7% Leukemic infiltration of my T-Cells.
Two months into recovery from my transplant and I was already relapsed.
My absolute worst nightmare.
I just couldn’t do this anymore, its been too hard and I have been through too much and now this. I called my doctor to try and understand what all of this meant and he seemed just as surprised as me, it just didn’t seem possible to anyone – I was surrounded by disbelief.
He explained to me that this was simply not good. If I had relapsed 6 months post transplant I would have more options, but since it was so soon the idea of redoing the transplant was off the table and I was back to working with oncology to find a way to fix this.
The following week felt like a never ending panic attack, none of this felt real, it felt like I had just lost contact with my ship on a space walk and was uncontrollably spiraling to my own demise.
It was a constant battle to try and figure out what the next steps were and maintaining these new medications to keep myself safe from any damage the disease may do to my body while we work on these next steps.
Fortunately I am at one of the best cancer facilities in the world being treated by one of the best oncologists in the building and she always has some sort of a plan.
She found a drug that had very little testing due to the rarity of my disease, but it was the option, though it was not funded so we needed to get it released on compassionate access from the drug company.
After weeks of waiting for the chemo to land in Toronto I was finally admitted to the hospital.
Though my family was optimistic about this cycle, there was this haunted feeling I kept having that something out of my control might take place, something unpredictable.
After treatment things looked okay, my counts were down and I was experiencing the typical side effects of a really harsh chemotherapy regime, intense mouth sores, nausea etc…
Though, two weeks post infusion something out of the ordinary started happening.
My Neutrophils began recovering along with my white blood cells.
At first I thought this was a good thing, my counts are recovering at a normal rate and things looked good, but what we didn’t realize was that as these counts began to really recover, I began having a bit of trouble breathing. This is a normal situation for the most part, it is common for neutropenic patients to get lung infections but because of COVID I got swabbed again and tested negative, but before we knew it my status continued to decline quite rapidly.
I just felt like, what else is new – I haven’t had many cycles (of the 19 total chemo cycles I have had) that didn’t come with some sort of complications, so why should that change now?
Well, it didn’t, my lung health continued to mysteriously decline and because of my low platelets performing a bronchoscopy would be too dangerous as it could cause internal bleeding (I also hate bronchs more than anything in the world). As my lungs declined and my oxygen dependence became more and more severe new people started to come to visit me, one team was at the time my least favorite – the Mount Sinai ICU team.
I hated seeing them so much because I have been here before, I know what it means when they are paying attention to you…
Welcome to Intensive Care – the land of constant supervision, beeping, screams from neighboring rooms and just general nightmare fueled chaos.
On Saturday I was fighting with them on my need to be transferred and sunday I was being rolled across the bridge to Mount Sinai from Princess Margaret.
It is sort of funny because this would seem like the time to feel like things were ending for me, and really it did look like it clinically.
I was spiraling the colloquial drain.
But I wasn’t afraid at all, it may have been the huge amount of drugs I was on for pain, but something in me said that this was not it, I was not going to die in this ICU.
Though that entire 10ish day stay was a complete blur, I remember one event very vividly. They tried to put me on a CPAP, which for those who don’t know is a breathing device that pushes air into your lungs, and in the ICU is it the last line before intubation. I remember telling my dad to come closer as on top of my inability to project my voice the oxygen machines were so loud you couldn’t hear yourself think if you tried, and he leaned in and I told him “there is no fucking way I am getting intubated, I won’t let this get that far.”,
I was right, almost as if it were dictated in that moment, the following days were the beginning of what was my recovery.
As I reduced my dependency on pain medications I regained lucidity and began to understand what had taken place and it’s true, for the second time in two years an unforeseen and fairly mysterious lung disease was incredibly close to taking my life. I was shortly transported back to Princess Margaret where I continue to recover now, but at that point we were still waiting on the results from my treatment.
Now those results are back and unfortunately, I still have some treatment ahead of me as my disease is still not fully under control, though in the meantime I have had the opportunity to reflect on all of this chaos that has been my life over the past two years. Upon that reflection, I really only have one thing to say
For Someone With Such Bad Luck, I Am A Pretty Lucky Guy.
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