This blog post was originally written by Michael himself several years ago during his battle with leukemia. What you’re reading below is a direct copy-and-paste of his original words. If you’d like to view the original blog in its full context, you can find it here: https://mycancerjourney555.wordpress.com/blog/.
All chapter headers below are linked and will redirect you to that specific entry on the original blog so that you may view the photos and video.
Prologue-The Beginning
2 months, 10 days…
Finally another weekend where I am home.
Where do I begin? Where have I come from? What happened?
No person will ever and could possibly ever stomach hearing your doctor tell you these exact words… LEUKEMIA.
A disease in which affects so many…
Its easy to sit around, mope and constantly tell yourself, why me? Well fuck, why me? How about why anyone? 1 IN 3 PEOPLE are affected by this deadly blood disease and let me tell you, it ain’t easy. The constant feeling of being alone, an alien amongst many.
No one truly understands something until it happens to themselves. Trust me I know. But theres light at the end of the tunnel and I’m choosing to walk through it. Im going to take everyday how it is given to me and I’m even going to smile about it, because I know now what I am capable of. If i were to look back before all this began i wouldn’t have been able to believe so.
Not only is leukaemia a deadly disease but self image was just another piece of the puzzle. Some of us have trouble to bare sight at ourselves. And why? Because of labels, we struggle to meet the standard of what it is we need to look like, feel like and be like. Do we though? I struggled many years with feeling absolutely horrible about myself. And the one thing i did about it was bottle it all up. Just until the cap was ready to pop right off. Just until it was no longer avoidable. What i did do was finally accept myself for who i was. I took away the power of labels and saw life in a different way. No longer did it matter what size you were, what the colour of your skin was, what clothes you wore, what house was yours or what group of friends you belonged to. What finally mattered was how YOU and only you saw yourself. Because if you don’t love you how do you expect others to?
Like Pink’s song says, “what doesn’t kill you makes you stronger!” Trust me, it’s sure as hell true. I have chosen to get up, fight and tell this blood disease, no , you and me ain’t friends.
I DO NOT ASSOCIATE WITH YOU
NOR WILL I
OR SHOULD I.
You might be asking,
How can he be so positive?
How is he doing this?
Mind over matter…
Knowing that your mind is powerful, thats how. Why frown when you can smile? Why even think of the negative when we can be fuelled by the positive?
If you take the thing that’s doing the hurting and take away the fuel it needs, it is now simply , a useless thing…
I am not alone , nor will I ever be. This is my journey and I will be here to tell you it.
And I hope that many of you will benefit from it.
Chapter 1-Day 1 of 28
July 18th, 2017 was the very first day i lay in my hospital bed looking at my ceiling.
i was nervous, anxious, afraid. Just plain terrified of the unknown. What was about to happen? What possible outcomes would be at play?
CHEMOTHERAPHY. A 12 letter word that would now be part of my vocabulary. I wasn’t alone but i sure felt like that.
Drip…Drip…Drip… It began. As it flowed through my veins i began thinking of all the side effects that would soon come to play with my body. As though my body were a game and the side effects are the players.
Was i ready?
No. But i needed to be. This new journey wasn’t going to be easy and still isn’t easy but if i layed there letting this disease become of me what good was that going to do?
A toxin to kill a toxin i said. The cold feeling filled my veins, it was weird. I closed my eyes and waited as the pump was ready to ring.
CRASH!!! I was knocked out by these toxins. i had slept throughout the entire first bag.
BEEP… BEEP…BEEP. The pump began to holler.
i opened my eyes, looked around the room and all was normal, all but the fact that this was now one bag, with many more to come…
Many side effects…
Many worries …
And many fears…
Luckily i turned to my side , saw my mom and smiled. I know knew her being with me would make this journey a whole lot easier.
NO ONE SHOULD EVER BE ALONE OR SHOULD EVER FEEL LIKE IT!
She’ll be there be with me till the end, until we’ve kicked this cancer to the curb…
Chapter 2 – The Fundamentals
Acute Lymphoblastic Leukemia was what the doctors murmured to confused 18 year old me. I had never heard of this… let alone understood it.
The doctors began to describe the fundamentals of my diagnosis. I would undergo cycles of chemotherapy, which would be challenging.
There would be lumber punctures, which was a process of removing liquid from my spinal cord, which would later result in me paying the price for one but i’ll get to that later.
And Finally marrow biopsies. These procedures were done in order to find the percentage of leukemic cells in my bone marrow.
With all this information flooding through my head, i sat there with fear that ran through my spine.
Fear of the unknown.
I didn’t know what to expect and that honestly scared the fuck out of me. There was no way of sugar coating the shit that was about to go down for the next month. This was known as the induction phase.
…
It was August 1st, i had already gone through weeks of treatment. And i was being preped for my first ever lumber puncture. Not only were they taking samples of spinal liquid but a dosage of chemotherapy needed to be injected as well.
I was crippled by the fear of the unknown.
i didn’t know know what to expect. Was i ready to have a needle be poked in me? Was i ready to receive another dose of chemo?
NO I WASN’T, but i had sure as hell had no say for the matter.
This was no walk in the park…
and it would be like this for me to get to the end.
…
The third day of treatment was the worst. It consisted of a 4 HOUR DRIP. One of the strongest dosage i had ever received.
The side effects came rushing like train at full speed.
The nausea was t e r r i b l e…
My stomach felt as though it was being strangled beyond anything you can image.
With my dad’s assistance he helped me to the bathroom. As i got ready to pee , the lights faded and i layed back , collapsing to the floor. Luckily he was behind to catch my fall.
I sat on the floor trying to come back to reality. It was now that i began to panic…
I had never felt like that and i never wanted to feel like that again…
There was a possibility this were to happen again. I knew i still would not be ready for it.
That’s the thing with this disease it is a constant roller coaster. There’s ups and there’s downs. Your constantly on the tips of your toes. But mostly it’s a giant mixture of feelings. Some days would be better than others. That was how it was and i needed to be ready for it.
I would be faced with feeling sick. Feeling alone. Feeling hurt. Feeling ugly. Feeling like i was the only one going through this. But as i approached the window of my hospital room door, i saw a row of rooms, just like mine.
I wasn’t alone. There were many just like me. Feeling exactly how i was feeling.
…
It is now October 5th, as i lay in my hospital bed i leave you all with this, cancer is now the number one disease that affects many, it comes in several shapes and sizes.
and these are the fundamentals of A.L.L, my leukemic disease..
Chapter 3-The procedure in the wrong hands costed me a leg
Let me start by saying,
it all started when i had my last lumber puncture. The lumber puncture from hell.
…
After many weeks of my spinal fluid showing no results of leukemia, i prepared myself for my final lumber puncture.
THE LAST ONE! i hollered aloud.
i was so happy to finally be rid of being poked by those marvellous needles in my back.
The clock read 2 o clock, i was administered a dose of ativan which allowed me to relax during my procedure. The neurologist walked in the room, it was a familiar face so i knew this procedure was going to go smooth. I would later regret those same thoughts.
As the procedure continued, i looked over to the clock and read 4 o clock. A procedure that takes 20 minutes had now been elapsed for 2 hours…
Something was definitely wrong and i could no longer bare the pain of being poked. It was as though my back were a target and the needle were the darts in a game of darts. Enough was enough, i looked up to the neurologist and exclaimed that he stop.
After an hour of resting on my back, which was a post procedure thing, i got up to relax in the chair that sat near the bed. Something felt out of place. I could just sense it. I knew something had happened during the procedure and i was just about to pay the price for it.
As supper arrived, a sharp pain rose up my right leg. It scared me beyond words can describe. i immediately returned in bed and called the nurses for assistance. i began to panic. My leg was losing feeling as well as it’s motor function and strength.
I began to cry.
What was happening to me? Was this going to be permanent?
About a million different ideas rushed through my mind. It was me vs my demons and i needed to make sure i won.
…
The butterfly effect was what i was calling it.
A caterpillar goes through metamorphosis in order in gain its wings.
In my case, as much as i hated to admit it, patience is what i needed if i ever wanted to regain my wings.
i had become a geriatrics patient and that had me freaked out the most.
I had lost control of my bowel movements and i couldn’t pee without a cathather. I could no longer control my flatulence, it came and went as it pleased.
Everything was mixed up and having no CONTROL was nerve wracking.
18 years old and i was forced to carry a
D I A P P E R.
You can imagine how i felt…
embarrassed.
upset.
But most of all i was scared.
Scared i’d be forced to live like this for a long time. And this was all thanks to my last lumber puncture. The lumber puncture from hell.
From this point on , things were about to get worse for me. If i let myself believe so.
This butterfly wasn’t ready to regain his wings just yet…
Chapter 4-Not all Heroes and Heroines Wear Capes
The damage that was left behind would not let 18 year old me down. There had been something i’d be waiting for. A goal i had set myself.
I had been hearing for many months about a great experience the LLCS (Leukaemia& Lymphoma Cancer Society) offered not only in Montreal but a big part of North America. This event was known as “Light the night”.
It would be my first time taking part in it and now with my damaged nerves , it was one big wall i needed to leap.
…
As the four wheels screeched against this unfamiliar floor, looks were exchanged from left to right, from right to left. I was a baby monarch compared to the many older people who stood in front of me.
As the doors opened an instant smell of pure disgust hit your nose hairs like an avalanche. Mixtures of urine and poop were among them.
There were many people here, all for the same reasons. Getting back to walking, running and up in to shape. At this moment , looks came my way, i was though a leader to many, the youngling of the bunch. The baby monarch.
Races were a practical game of show off. The older men and woman would grab their walkers, face me and bolt to the end of that finish line. With the intention of saying “ha ha look at me, at my age, im still a young cheetah.” As i followed behind, catching up, their speed accelerated a bit more. The Physiotherapists faces illuminated. I would be the motivation to get these ladies and gents moving, even if they didn’t want to. All that stood in their way was a young boy like me to beat them.
…
As weeks went by, improvement skyrocketed like missiles inbound to strike. i had already learned a variety of exercises that were all accessible from either my home or the hospital room.
i could smell it, i could taste it, i could feel that event getting even closer. Wth my improvements that had followed there was no way i would not get to miss the opportunity like this.
it was my last day of physio when the instructor wished me a great time for the event. She told me how proud she was to see me evolve from nerve damaged, loss feeling from my leg to now an undertaker who was ready to walk or sit for a cause not many knew about.
As the doors closed slowly behind my exit, i turned to the physiotherapist, smiled and happily said “not all heroes and heroines wear capes, but what you have done for me here is picked up a butterfly , saved its broken wing and allowed it to once again sore just as though it were all meant to be.”
Her smile widened from left to right. Her reply was just the right words you could have anyone hear, “everything happens for a reason, you know that, i am glad you were another person who was able to show everyone that anything is possible when you push yourself to achieve it.
Chapter 5-The walk to help end all blood cancers
October 14th, 2017
My eyes lay wide opened, as the alarm from my phone rang across the floor. Not only was it the big day but it had also been my first morning home from the hospital. I felt the excitement rush from head to toe.
We gathered our lanterns, ready to illuminate the night. The walk was only set for 5 o lock, but the excitement made my patience impossible. I was ready to leave now but there were different things to prepare first.
That morning , the weather was gloomy, very little rain was present and sadly no sun was insight. I didn’t let it bother me, i prayed to all angels and archangels up above “Please make this day beautiful, do not bring cold weather, rain and or interruptions for this walk. Thank You, Thank You, Thank You.”
…
That night i did not expect the turn out that had unfolded. Many familiar faces circled our tent. Michael’s Minions we called ourselves and we were here to raise awareness! As my minions circulated me , we extended our lanterns high and proud.
3 distincts colours surrounded us.
Red= for all those supporting someone with a blood cancer.
White=survivor/battler from a blood cancer. and lastly Gold=a member lost by a blood cancer.
i could not believe my eyes, i was overwhelmed with an array of emotions from all these people who stood here by me and with me. They were here to give patients a chance at surviving and battling this disease with hopes of one day a cure being found.
Tears scrambled many of my supporters faces. They were proud of me. Proud of the man i had become. Even after being hit brick by brick with challenges, i never once frowned or let anything negative get to me.
As hard it was, i looked around the park to see many families dealing with this exact same problem. They were all here supporting someone they cared for deeply. Someone who could be as young as 1 or as old as 100. Leukaemia and Lymphoma had no bias.
One by one we took our lanterns, held them to the air and were off. We made a difference as best we can for the future of blood cancers. It wasn’t just the fact of raising money but the fact of bringing everyone together to prove that help had no limits.
Being told i hit remission was another factor of celebration for that evening. Not only did it confirm i kicked ass but also that soon enough a transplant would be making its way to the Petrella residence.
That evening i went to bed with a widened smile. Not only was i thankful for my supporters but i was thankful to be given some opportunities others did not achieve. The fact of my age made this battle a little more easier… So we all thought.
It wasn’t until the transplant board members murmured these words to me and my parents, Rare case indeed.
Chapter 6- A chance at Rebirth
The list of solutions began to decrease after efforts of finding me a donor. i was a rare case indeed the doctors said. My mutation carried no similarities from the global donor bank. But not all hope was lost.
Dr.Sandra Cohen had approached me one day during my appointment in the outpatient clinic. She said she had news of a transplant, cord blood , a method she was very familiar with.
The three of us filled the limited office space as we prepared to either hear good news or bad ones. Whichever way it went, i was going to make sure it had no affect on how i would continue to fight.
Dr.Cohen presented us with two methods:
a) a regular cord blood transplant which was in existence as of 1998.
or
b) an experimental method which held a total of 18 recipients as of July 2017, the month i had been diagnosed. A total of 17 patients successfully made the transplant.
Dr.Cohen assured us of the information necessary to be understood. It was a decision i had to make and an easy one it was not.
She sent us on our way with a deadline of a week to get back to her with my transplant decision. I sat there that night making sure that my decision best be the dam good one. Only one factor remained commonly amongst my choice. Which ever method i chose, i wanted it to benefit me and any other patients that would come across it.
After reflecting over and over, my decision came clearly. i knew that i wanted to be part in the method of Dr.Cohen’s research, if i were patient 19, it would be one step closer to making a new breakthrough. One that would one day become a general practiced method.
There was no amount of time that would prepare me to return back in the hospital. I was finally home and got use to being in my bed, moving at free will and spending time with all the family members i wanted to be with.
As hard as it would be i made the realization that this would be one of the final steps to reach the finish lane. To finally in-fact kick cancer to the curb.
Dr.Cohen sat us down for our very last conversation before preparations were finished for the transplant. Preparations included many different tests and exams. Especially sitting through a two hour stem cell class.
Some questions constantly shuffled in my mind.
What was the cord’s-gender? Where was it coming it from? And How would i ever repay someone for saving my life?
As my jaw dropped to the floor, Dr.Cohen muttered all answers to my questions.
Not only was i going to be given a chance at rebirth but my special cord that i had been waiting for was from no other than a baby boy all the way from Saint-Louis…
It became the biggest blessing in disguise. Not only were i to receive the transplant but having it now would be the greatest Christmas gift i can ask for.
All that remained now was a date, December 21st it was. Definitely a Christmas miracle was finally on its way to the Petrella residence.
Chapter 7- Prepping for Transplant
An Excerpt From: through a moms eyes
“A lot has transpired since my last blog.
Michael has been admitted once again on December 14th, however this time it’s to prepare him for his transplant.
This week has been on the back of our minds ever since we met with the transplant team over a month ago.
We were told at that time that due to Michael’s rare genetic form of leukemia there wasn’t a match throughout the worldwide bone marrow registry. Where does this leave us, besides helpless and devastated?
As the Dr. witnessed the blood drain from our faces she proceeded to tell us Michael’s only option. An option we knew nothing about. Umbilical cord blood transplant. What in the world was that and how would that save our son?
Amazing technology today has given hope to so many who were told there’s nothing more that could be done.
As she proceeded to explain this option, she also requested Michael make a decision between regular or experimental. He was given a week to make a life changing decision. As she advised he couldn’t wait any longer. Our hearts stopped not realizing the severity of Michael’s diagnosis.
She handed Michael documentation on both options explaining in full detail the side effects and complications that may arise along with the success rates. My immediate question to her was “which is a better option for him?” Something she couldn’t answer without being bias no doubt as she is in charge of cord blood transplant team. She called it her baby!!! “We’ll Dr you need to save my baby with your baby!” I wanted to scream out.
As a mom I was looking for reassurance and guidance from the professional sitting in front of us. Yet in the same breath this was a decision only Michael could make and we could only support.
At just nineteen years of age he should be making decisions on what car to buy or what college classes he should be taking. Instead he is faced with life changing ones, that even as his parents we are having a very difficult time doing.
We left her office filled with many emotions and questions. As we discussed these options further at home Michael voiced he was leaning towards the expanded cord blood transplant. This is the experimental one which has only been in practice since July of this year. He would be the 19th recipient of this type of transplant.
His reason for his decision was merely wanting to be part of a protocol which can help others like himself if it in fact becomes a successful route. Unfortunately there isn’t enough long term data to support that success. The warrior standing before us will not be frightened from the lack of statistics. Instead he is determined to help others whatever the outcome. We could not be more prouder and terrified.
Michael signed the documents and advised the transplant team of his decision. They notified that transplant day will be on December 21st provided all his scans and lab work come back with no concerns.
Michael will be admitted to hospital one week prior where he will begin intense Chemotherapy and Radiation. This is to prepare his body for the transplant.
Transplant Dr requested to speak with Phil and I privately on the day Michael was admitted. Immediately my knees went numb and heart raced. She never wanted to speak privately. Something must be wrong. The look on her face scared us even more. Some results came back raising concerns of serious complications that can arise during transplant. We weren’t expecting to hear her otter those words. Michael’s liver is inflamed along with his air capacity in his lungs is below normal. With the intense Chemotherapy and Radiation it will irritate those sites even further and can cause serious complications. Immediately I asked should we hold off on the transplant. Her reply was absolutely not. It’s imperative he have the transplant along with the intensive treatments prior. Her concern was how would Michael take the news and wanted to run it by us first. Phil and I both agreed he should be told. We’ve never withheld any information and why would we do so now. He’s the one fighting and will have to be emotionally and physically prepared. To which she agreed.
Fast forward a few days here we are today with already three days of intense Chemotherapy behind us.
Today is the first day of full body radiation which will be done twice a day for three days total leading up to the big transplant day on the 21st.
Witnessing Michael fight with such strength and grace through these very …very…very difficult days is truly remarkable and heartbreaking. No parent wants to see their child suffer.
Praying for extra strength to get through the next few days. One day at a time”
-Carla Petrella
From Us
Michael passed away on March 19, 2019 — nearly two years after sharing this blog with the world. Though he is no longer here physically, his words, spirit, and strength continue to move people who read them.
We’re honored to share his journey, exactly as he wrote it, so that others might feel a little less alone in their own battles — and remember that even in the darkest moments, light and love still shine through.
Thank you for reading.