It was the scariest moment of my life, hands down.
I had just completed what I thought was the biggest challenge I will ever face; Induction and Consolidation and was just entering maintenance treatments while preparing to get back to work.
Then it happened, every cancer patient’s biggest fear.
When I say this came out of nowhere, I mean it.
Cancer doesn’t give a shit when or where you are, in this case, I had my oncologists consent to work form in my hand ready for my doctor to sign.
She called me into the office before my bloodwork even came back, a common sign of confidence in my status, and we both confidently fired around the idea of me getting back to work in the approaching weeks.
No less than an hour later, everything had changed.
What was a triumphant day at 9 am had turned into a living hell by 10:30 when my blood work came back and showed 40% basts – That means 40% of the white blood cells in my system were cancerous.
FUCK I CANNOT DO THIS – IT CAN’T BE HAPPENING
I was truly horrified.
Relapse is not just a reset button on the whole process, it has infinite amounts of implications.
since I was in treatment when it happened there was a good chance that new disease was more aggressive and even treatment-resistant.
That means that we needed to begin a new phase of aggressive chemo HOPING not KNOWING it will work – something we wouldn’t have answers on until I recovered 4 weeks after treatment began.
A week after that brutal day, I got what felt like my trillionth bone marrow biopsy – the results of which were 80% blasts; I was basically a walking tumor…
Stage IV Acute Lymphoblastic Leukemia RELAPSED as my chart tells.
It was time to begin treatment, an aggressive regimen that included drugs I had never taken before.
I had no idea what to expect.
The protocol is an aggressive immunosuppressant that targets blood-producing stem cells and kills off every last one, sending me into a four-week neutropenic state.
Now not only is the threat of Cancer looming, but infection is next to guaranteed.
A bacterial infection in my right lung?
2 weeks in isolation?
The prospect of death had never felt more real than during this time.
It was the first time in my life that I felt like it was time to find a way to be comfortable with this idea of dying, but I couldn’t do it.
It isn’t a new characteristic of mine to be appreciative to be alive, to want to take advantage of every moment of my day.
The reality of having a high likelihood of death was a lot to take in this time around.
It didn’t feel like I was dying, but when it came down to it, every morning they took my blood work felt like the start of a new countdown.
A countdown to determine the following
- I am still neutropenic, in which case – fuck ya at least I get one more day knowing death isn’t knocking my door down.
- There are blasts, in which case it is time to try more aggressive treatments before I am decidedly terminal
- Counts are recovering at a normal pace, thank cthulhu.
I rolled a 3, my platelets were recovering at a normal, healthy rate.
After 3.5 weeks of confronting my greatest fears, I could finally feel comfortable and confident that we can move forward from the hell that was relapse.
The scariest month of my life lead to the most suspenseful week of my life.
Waiting for the results of this damn biopsy.
This biopsy didn’t feel like it was to determine remission, but survival.
All I could think of was that if it doesn’t show remission we are going tombstone shopping tomorrow.
Less than 5% blasts
Say it again for the people in the back
LESS THAN 5% BLASTS
Complete fucking remission holy hell lets just take a second with that one.
Though it doesn’t really get much easier, I don’t get to have this in my rearview quite yet.
Turns out relapsed ALL isn’t something they are confident treatment alone can fix.
They insist a bone marrow transplant is the only way to offer true success here.
Fuck, what does that even mean?
It’s tough to wrap your head around replacing an entire immune system, the amount of work that goes into it is insane. Every test imaginable has to be done to ensure not only am I a candidate but that I have a match.
Fortunately, I am a lucky one.
Not only are Ashkenazi jews fairly inbred so our genetics are pretty 1:1, but I have an incredibly brave couple of brothers who couldn’t have been quicker to register to be a donor.
In a world where at least 3,000 people die each year because they cannot find a donor, I had three 10/10 matches.
For someone with shit luck, I am pretty fucking lucky.
Even more fortunate – my brother is a direct match and the most viable candidate.
This means so much.
Transplant comes with a lot of potential complications, all of which a sibling donor can contribute to mitigating.
So here we are…
Nearly three months after the day I relapsed
A week away from transplant
Day zero – February 7th
My new Birthday.
Seriously the doctors call transplant day DAY FUCKING ZERO.
Because genetically I am a new person. I get my donors blood producing stem cells and immune system, I inherit his allergies but unfortunately it is unlikely I inherit his immunities. I am a new born child in terms of my immune system, I have to begin revaccinating the same way a mother does (hopefully) her newborn baby.
Today I sit, waiting for this big next step to being done with this whole thing.
I can start moving on with my life.
The next few months will not be easy, complications are common and well, to be honest, finances are running thin.
Though I have decided that with a new life given to me, I am going to do something that I have wanted to do for a very long time.
I am going to turn my brand IDoverEGO into a productive company.
I have scraped together enough money to produce a round of apparel, the profits from which will contribute to my financial survival until I am able to get back to work – this could be in 6 months or a year.
All of the products from this inaugural line will be designed and coordinated from my hospital bed in the transplant unit of Princess Margaret with the help of my father, running back and forth from the hospital to the supplier retrieving samples.
IDoverEGO has been a quiet personal project of mine for years, and it has been my dream to offer something fun, sustainable and meaningful to all of my family and friends for years to come.
Thanks for all of your love and support.