Alexander Mandarino

A little bit about you:

Name: Alexander Mandarino

Age: 22

City: Brampton, ON

What was your diagnosis?  
Acute Lymphoblastic Leukemia (ALL)

What year was it? What was your age at the time?
November 2014, I was 20-years-old.

What is something you’ve done that you’re really proud of?
I get this question a lot, and quite frankly, it’s conquering cancer. Being able to push through two years of treatment with a positive attitude and to still be standing afterwards.

What is a top item on your life to do list?
My career goal is to become a professional public or motivational speaker. I would love to get the chance to inspire anyone going through difficult circumstances, especially cancer, to move forward with their head up.

What are your hobbies?
I’m a huge sports fan, especially hockey and baseball. I like to watch games, but I especially love to play pick up ice or ball hockey and am looking forward to doing so after I regain a lot of my energy. I also like to read and enjoy setting up poker nights with my friends.

 

Your diagnosis:

What was your life like before your diagnosis?
Very active. I was in my third year of undergraduate studies in the Honours Commerce program at McMaster University. I was living off-campus with my roommates, playing intramural ball hockey, and working out four or five times a week. I was definitely on the move a lot, balancing studying and extracurricular activities. Right before being diagnosed, I was taking courses to pursue an internship through the school.

How did you find out you were sick? What led to your diagnosis?
One night, five or six, hours after I had finished dinner my stomach felt extremely bloated as if I had just finished eating, I just ignored it and went to bed. I woke up the next morning feeling terrible, and I had to lean against the banister before leaving for school that day. After a long day, including midterms and presentations, I went home and straight to bed. I woke up the following morning with my bed drenched in sweat. I felt a lot better, so I didn’t think much of it, and I decided to go to the ball hockey tournament my roommates and I had signed up for. I continued throughout the tournament with no physical issues whatsoever. After returning to the change room, I felt heavy, nauseous, and more exhausted than I should have been. I returned to my home in Brampton that night. After feeling this way for a full week, we went to a clinic at the closest Shoppers Drug Mart, where the doctor immediately requested I visit the hospital.

That night I underwent a casual blood and urine sample and some minor tests. The doctor on call believed I had mononucleosis, which I would easily have accepted in retrospect. I returned the next day to run an ultrasound. After this, I was consistently being sent to different testing areas, and finally had to sign in as an inpatient. That night, the doctor doing rounds came into my room, sat me down, and broke the news to me.

What were your first thoughts when diagnosed?
I honestly don’t remember, most likely shock. I do remember I didn’t cry or shout or complain. I was calmer than I had ever been; I just wanted to be with my family. I do remember immediately thinking that I was going to be fine, that there were procedures to treat this kind of thing. The funny thing was I think I was more upset that I would have to take time off school and delay my education and career, rather than worrying about my health. There was so much information being thrown at me over the first day that I didn’t even have time to think.

“The funny thing was I think I was more upset that I would
have to take time off school and delay my education and career,
rather than worrying about my health.”

In which hospitals were you treated?
I was originally diagnosed at Brampton Civic Hospital; I received all of my treatments at Princess Margaret Hospital in Toronto.

What did your treatment consist of?
I underwent the Dana Farber Protocol. The program is about two years in length. The first month is called induction, and is spent as an inpatient. This phase consisted of a full week of daily chemotherapy performed intravenously, two lumbar punctures, and oral chemotherapy in the form of steroids. The final three weeks is spent sitting idle while the chemotherapy drains your immune system and allows it to build itself back up. I actually finished this phase early and was able to leave the hospital on Christmas Eve.

The second phase is CNS or Central Nervous System phase, which lasts three weeks. It consists of one lumbar puncture each week, as well as oral chemotherapy. This was the least intense phase, as the steroids were eliminated for a short period of time.

The third phase was intensification. This lasted 30 weeks, with visits to the hospital once a week. These hospital visits consisted of blood checks, doctor’s appointments, two intravenous chemotherapy drugs, and a needle. I was required to wait at the hospital for one hour post treatment to ensure none of the drugs caused any harmful side effects. The rest of the time spent at home included taking oral chemotherapy and steroids. The steroids caused me by far the worst pain I’ve ever experienced in my life. Withdrawal after taking the steroids for the specified five days would cause shooting pain through my leg muscles that would not subside without painkillers. I was prescribed codeine for the pain, although it made me vomit and was extremely unpleasant. Needless to say, 30 weeks of this was formidable, easily the toughest phase to encounter.

The last phase was maintenance where the same treatment was applied as in intensification, but the doses were decreased and the hospital visits less frequent (once every three weeks). I started to gain a lot of energy back as this commenced, and my muscles grew back in my legs. This phase was easier to endure and it allowed me to be involved in more activities that got my mind and body moving. It still wasn’t easy, but I maintained a better emotional presence throughout that gave me strength to continue.

I could probably write a novel describing how I felt throughout these two years. The first month spent in the hospital was without question the worst month of my life. After the first week of chemotherapy, I was so weak that I had to answer questions by pointing my finger or nodding slightly. I felt mildly nauseated 24/7, and the best part of the day was going to sleep so I didn’t have to deal with the side effects. Mentally however, I think I felt strongest comparing the whole two-year experience. The only mental waver was when I ran my fingers threw my hair and pulled two clumps out. That night, I had a nurse shave my head and I felt nauseated throughout the entire process. I thought that if I could tough this month out, that it would be smooth sailing from there on out, and I think that mentality helped me endure all the physical trauma.

Treatment outside of the hospital was only marginally less taxing physically and mentally. The first 10 months of intensification consisted mostly of resting at home, watching every Blue Jays game, reading, and rolling through Netflix series’ without pause. I had no energy, muscle, or care to go out very often, and only rarely did I catch a movie or grab a bite with a group of friends. Mentally I couldn’t fathom sitting still. I was such an active kid before diagnosis and hated seeing every one of my friends pass me academically, in relationships, career-wise, and all other aspects. The weekly hospital visits were the longest periods spent out of the house consecutively.

By the time I trudged my way to the maintenance phase, I had had enough. My goal was to go back to school that September, and I did. It was difficult to complete a year and a half of university away from home, but my mental focus toward earning my degree and physical drive to attending the gym four times a week allowed me to transition slowly back into a somewhat normal life.

What is your current medical status?
My status as of January 2015 was in remission, and I continued under the same medical status throughout my treatment. I finished treatment in January 2017 and continue to remain in remission, with a positive outlook for the future.

 

Life after cancer:

How is life different for you now post diagnosis?
I’ve only been post diagnosis for a few months, so physically I’m only slowly noticing signs of increased energy. Going to the gym isn’t as taxing on my body and I’m finally increasing weight totals instead of hitting plateaus.

Mentally and socially, I’ve already noticed that my mood everyday is significantly brighter. I feel like a weight has been lifted off my shoulders and that I can finally pursue any avenue without being held back. It’s amazing what waking up and not having to take a collection of pills will do to your mood.

“It’s amazing what waking up and not having
to take a collection of pills will do to your mood.”

What is/was the toughest part about having cancer as a young adult?
For me, it was sitting idle while all of my friends and peers moved on with their lives. I was gearing up for possible internships when I got diagnosed and missed out on that. Watching everyone get jobs, finish school, get into relationships and experience life was painstaking. Social media amplifies this feeling tenfold because every time you log on, there are dozens of pictures and stories detailing adventure, and you begin to think that everyone is constantly having a good time, and you can’t even leave the house. It made me miserable and more prone to avoid all social interaction.

What really helped you to keep going while you were sick?
My mind, and my support system. I maintained a positive outlook for most of my treatment and I talked myself forward a lot of the time and I feel good taking credit for that. However, without my family and friends forcing me to take pills, enduring my frustration and anger, and consistently giving me words of encouragement, I would literally not have made it all the way. Hearing “you’re an inspiration to me” from several of your friends and people you barely talk to gives you an incredible sense of motivation and belonging.

What kept you busy during treatment?
Like I alluded to earlier, I ran through a lot of series on Netflix and other platforms, including Sons of Anarchy and re-watching Friends. I took up reading, something I lost interest in had no time for what with being busy with school and work. Reading relaxed me; I was able to immerse myself in a world outside of my own and travel away from my problems for a few hours. I made an account for Lumosity, the website that tests your brain with challenging and fun games, and that kept my mind sharp as well.

How are you connected with Young Adult Cancer Canada? How did it happen?
I had heard about the program throughout my cancer journey but never felt the need to reach out. Near the end of treatment, I realized I wanted to help the cancer community in some way, hopefully one day speaking on behalf of survivors and motivating others. I attended the Big Cancer Hook-Up in Toronto and the Survivor Conference in June. I first heard about the program via email early in treatment, and with a few months left in my journey, a friend encouraged me to get involved.

 

The issues:

Did you feel isolated from your peers since your diagnosis?
I never felt emotionally isolated from my family or friends. In fact, I honestly think this experience brought me closer to my support system. We’ve learned to value each other more, and I know that my close circle will always be there for me.

Socially I felt isolated from my friends; they were out shaping lives while I was quarantined in my house. I felt like they were passing me by, and there were times I would worry that they’d forget about me. I cannot stress how difficult it was to sit idle while my friends felt so far away.

Did anyone talk to you about fertility options before treatment? If so, how did that affect your decisions? If not, what do you wish you had known?
Someone from Princess Margaret Hospital discussed the possibility of preserving a sample of mine in case the worst happened from effects of the treatment. I was able to provide a sample a week or so before treatment, and I’m glad I was notified beforehand. I didn’t give it much thought afterwards and I continue to believe that my fertility won’t be impacted negatively.

How has your cancer experience affected your body image, and your relationship to your body?
I dropped 50 pounds in two weeks during my stay at the hospital. Even the nurses and doctors remarked that it was an extremely rare case. Hearing this fueled my anger because I was a healthy, strong kid before the treatment. I have always been really conscious of my physical appearance, and seeing my bones through my skin and having a puffy face from the steroids did not sit well with me. To this day it isn’t something I can accept and I hate how the treatment affected me physically. The positive take on this is that it motivated me to go back to the gym even harder, and it made the physical comeback that more meaningful.

What are some lifestyle changes you’ve made since your diagnosis?
I eat a lot healthier, and I’ve kept my hygiene in check a little more closely. I’ve always eaten fairly healthy, but making the choice to eat turkey bacon over regular bacon, and avoiding packaged foods at school are decision my parents suggested, especially considering my immune system wasn’t the strongest. I always wash my hands after coming home and tried to avoid large crowds during treatment.

 

Resources and recommendations:

What would you add to a treatment-day playlist?
Hell & Back (Remix)” by Kid Ink Ft. MGK

The Fighter” by Gym Class Heroes

Coming Home” by Diddy

Me, Myself, and I” by G-Eazy x Bebe Rexha

I’m a big hip-hop fan, so that’s the type of music that kept me motivated day in and day out. I liked to listen to songs that will motivate me to push forward, and remind me that I’m a fighter. It’s important to believe in yourself even when you’re pumped with drugs that’ll try and keep you down mentally and physically.

Which books/movies/podcasts/TV shows/etc. would you recommend?
I recommend everyone read The Alchemist by Paulo Coelho, not just cancer patients. It speaks to finding one’s destiny and it’s something everyone can relate to, especially when you’re uncertain about your future. I also recommend reading through the entire Harry Potter series. I couldn’t peel my eyes away from the pages; it’s wonderfully well written. The series is beneficial to read when feeling really sick, as one can immerse themselves within the story and forget about how they feel externally. It worked for me plenty of times.

I can’t recommend any specific movies, but I recommend re-watching some of ones favorite movies. Hopefully it will put one in the mindset that everything is okay and for two hours they are enjoying an old part of their life. Watching some of my favorite movies made me think of the first few times watching them and the person I was then, and that eventually that will become the norm again.

 

Stay in touch:

What would you like to say to other young adults dealing with cancer who are reading this profile?
As hard as it is to believe, there is a light at the end of the tunnel. No matter how sick or tired you feel, there will be a time that you’ll look down on your experience, not back, because you’ll have made it up the mountain. The most influential factor that got me through these grueling two years was a positive attitude. I found ways to laugh at myself, and I always had one or two thoughts or memories of a time when I was happier. I held on to those thoughts and I believed that I would feel that way again someday, and now I truly do.

It’s important to have an end goal, whether it is a huge achievement or simply completing treatment, and taking whatever measures it is to achieve that. I realized that sometimes I couldn’t push myself, and some days my body needed to lie on the couch for eight hours. Having a goal and harboring positive thoughts and energy will only benefit you in moving forward.

Are you interested in helping others facing cancer challenges? If so please let us know how you can be contacted.
Definitely, everyone could use a friend, even just to talk to.

Email connect@youngadultcancer.ca and we’ll connect you to Alex.

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