Matt Bednarczyk

Sadly, Matt passed away in December 2014. His obituary says, “Matthew loved life and celebrated it in everything he did. He was a passionate non-conformist whose dreams, unfortunately, were cut short. He touched the lives of many and will be remembered by them.”

Matt Bednarczyk - profile

Age at Diagnosis: 20 (2004)

Hometown

Montreal, Quebec

How did you find out you were sick? What events led to the diagnosis?

Well, This is definitely the long and interesting part of my story. The lead up to my cancer diagnosis lasted about 4 years. A pretty long time I started having symptoms of a brain tumour sometime in my last year of high school (grade 11 in Quebec). I would wake up every morning and have horrible nausea, this usually ended in me vomiting uncontrollably. As a result of this, I ended up missing some end of year exams and nearly missed my prom. I did end up going to that, but spent most of it miserable.

Following my graduation, I started to feel better. I came to the conclusion that all these symptoms were the result of stress. For the remainder of the summer and well into the fall and winter, I felt fine. Retrospectively, I remember noticing some things that I now know were because of the tumour. In the spring of that year, the same symptoms I had had a year before presented themselves again. This time, however, I also had bad vertigo and motion sickness, along with an increasingly painful, almost continuous headache. I also began having trouble moving my neck, and would get ridiculously dizzy with any sort of rapid head motion. I went to see an otolaryngologist, thinking it was an ear infection. He then referred me to a neurologist, who told me that I probably didn’t have anything, but he was going to send me for an MRI just in case. I made the appointment and cancelled it 3 weeks later, when I began to feel fine again. Yeah, I was dumb and stubborn. I attributed it to the stress — again.

After that summer, I felt relatively fine throughout the year, save some headaches and weird patchy vision. Things were just about normal until about midway through my third year of college. In January of that year, I underwent corrective jaw surgery (mandibular and maxillary osteotomies — orthognathic surgery) and came out of that with my jaw elastic-ed shut and heavily medicated with horse-sized Advil. The headache that had been getting worse and worse over time was suddenly gone — I attributed this to my corrected bite. In actual fact, it was just the Advil kicking in. As soon as I was weaned off of them, the headaches came back stronger than ever. I began dropping lots of weight, which I attributed to my jaw being wired shut (although, I was still eating enough). I then began to get dizzy spells and pounding, shooting pain every time I would go from sitting to standing. My mom and I both thought I was lacking vitamins and nutrition and so I consumed Boost, vitamins and Ensure as if there was no tomorrow. That didn’t really help with anything either. Nothing seemed to help and everything was getting worse. I saw my surgeon, who had no clear answers for my condition. He suggested I see other doctors. I saw one doctor who recommended physiotherapy, suggesting that I had a cervical sprain. Needless to say, that did little to nothing. I then went and saw my GP, who sent me for X-rays and blood tests, all coming back negative. He suggested that some of my symptoms might be psychosomatic, and that I should go see a psychologist and learn to deal with my stress. I began to get pissed off.

Each morning, I’d get up at 5 am, drive to school, trudge through the day and go to work. I was barely getting 2 hours of sleep a night. Some days, I would leave the house for 20 hours with only 2-3 hours of sleep under my belt. I failed one of my final exams and barely got through the rest.

The final crystallizing moment, and the one that lead to a concrete diagnosis, happened when I made my way up to Chicoutimi (a town in the Saguenay region of Quebec) to undergo an interview and testing session for admission into a pilot school program. The drive up sucked ass, as I had to stop every hour to lie down because my head hurt too much to even see straight. Once there, and undergoing the tests, I began to get some answers. The optometrist that I saw noticed that I had papilledema (a swelling of the optic disk). She said that it could be any number of things and wrote a note to the aviation medical examiner, asking for his opinion. I saw him and he basically did away with the aviation part of the exam and told me that I had to go to an emergency room IMMEDIATELY. I called my parents, thought about it for a couple seconds and then decided I’d be better off driving back to Montreal, which was 5 hours away. I set off, got to the edge of town and my coolant hose burst. I towed the car back into town, sat there for 2 hours while they fixed it and then set off again. I stopped about every half hour to lie down and soothe the pain. I got home about 9 hours later and just collapsed into bed. I saw my GP the next day, who made me an appointment with a neurologist and scheduled a CT scan. I never made it to those appointments. One day, my mom came and woke me up and forcibly dragged me to the hospital. They brought me in pretty much right away, where they performed several diagnostic tests, including a CT scan. There, they found a large tumour growing in my fourth ventricle, extending down past my cervical vertebrae. Oh, I also had massively swollen brain tissues and ridiculously bad hydrocephalus. It turned out that had I not gone to the hospital THAT DAY, then I might very well have just kicked the bucket.

What year was it? What was your age at the time?

I was diagnosed and treated for my tumour in June of 2004. I was 20 at the time.

At what level of education were you at diagnosis?

I had just finished CEGEP (a 2 or 3 year college in Quebec).

Do you work? part-time and I volunteer. I am also still a student.

What was your diagnosis?

Grade II ependymoma of the fourth ventricle of the brain. In other words, a brain tumour

What are your career goals?

I’d like to pursue medicine. I’m interested in pediatrics and pediatric surgery.

What were your first thoughts when diagnosed?

My initial thought was simply relief. I felt as though I had a huge burden lifted from my shoulders, as I finally had an answer as to why I had been feeling so horrible for so long. The surgery was scheduled soon after and I didn’t really have time to feel scared or anxious until after the worst of it was over. I know it may sound strange but the first time I really was scared was long after my surgery and long after my treatments had ended.

How did your family react?

My mom basically camped out in the hospital for a week straight. I didn’t really appreciate that at the time; looking back, I realize this is probably what kept me from going insane. My father was equally shaken and did all he could to comfort me and reassure me, although I didn’t buy it, because I could tell he was probably more afraid than I was.

How did your friends react?

I am very fortunate that my closest friends came forward and helped me out despite my shortcomings. I was also pleasantly surprised when some people I hadn’t spoken to in many years came to visit me in the hospital. It really meant the world to me. Consequently, there have been some people that were once in my life who are no longer a significant part of it as a result of this experience. I guess the old adage about how something like cancer shows you who your true friends are is true. It sucks, but some people can’t handle it. And as selfish as this may sound, when you’re vulnerable, it’s not always healthy to surround yourself with people who don’t give a shit — or who offer you advice about how you got your cancer, or what you ought to do, or, or.

What did your treatment consist of?

Medical Side: ################

Non-Medical Side: On the non-medical side, I pretty much went from denial to acceptance with all the other 12 steps in between. Physically, I never really felt overly horrible after my surgery. I mean, yeah, there were the hallucinations and the not being able to walk and the pain and the etc. But overall, compared to what I had gone through before my surgery, everything seemed so much better. I didn’t find the radiation therapy tiring at all and continued to work through treatments. I think that keeping busy at this time helped me through the days. Emotionally, the only thing that was taxing at first was my reduced ability to function normally. Not being able to walk and look after myself (even if only briefly) was somewhat emasculating. You really feel like shit when your father has to spoon feed you — it’s about having your independence taken away. Another significant part of the emotional side of cancer is the pressure that one has to get back to normal and to suck it up and deal with it (or, at least, to give off that image). I can definitely say that the bout of depression that I went through 2 years after my surgery was the result of denying my real feelings about the matter at hand when it actually happened.

In which hospital(s) were you treated?

Montreal Neurological Hospital, Montreal General Hospital

What is your current medical status?

I am cancer free and without any sign of recurrence. I have few latent effects and function better than before I had my surgery (which is a wonderful thing!).

How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?

My life has gone through a 180 degree turnaround as a result of my experience. I think I’ve become less selfish and I definitely have a greater appreciation for the little things — and for wonderful people as well. I feel great, I work out, I bike, etc. My neurosurgeon basically gave me my life back. I mean, I was alive before this, but now I feel as though I appreciate absolutely everything about every day. On the other hand, I still struggle with the thought of recurrence and the almost uncontrollable anxiety that comes with having an unusual pain or tenderness. I also suffer from a type of survivor’s guilt, in that I wonder what I did to be spared from death and spared from ill effects. In volunteering and in being a patient at the oncology clinics, I have seen many people who are worse off than me and it truly breaks my heart. I wish there was something I could personally do to change that. In the end, I think this experience forces anyone to learn about how life is a bizarre and strange dance and that a lot of what happens to you in your lifetime is as the result of being (or not being) in the right place at the right time — and having luck. The only control we really have is in trying to right our wrongs and trying to make the world that much better, if even for a short little while.

What is/was the toughest part of your challenge?

DEFINITELY, losing my lifelong dream of becoming a pilot. I believe I’ve touched on all the other tough parts of this kinda thing

What is/was the best part of your challenge?

I definitely think that the best part of this experience was being forced to grow up so fast. I had to change my ways, my views and my behaviour. As a result, I have turned my life around and found a new way to be happy and to help others as well. As for a specific incident that happened in my ordeal that really made me feel great, It was when the resident who assisted with my surgery came and schmoozed with me for a good half-hour, just out of the blue. I was really fortunate to have the most wonderful — AND CARING — doctors.

What really motivated you to keep going while you were sick?

My motivation came from small goals and baby steps. When I couldn’t move my arm, I’d focus on perfecting that. Then I focused on moving my legs, then walking, then walking alone, etc. Breaking up the whole experience into manageable chunks made it that much easier to swallow and to deal with. Overall, however, my motivation to get through this all came from some kind of innate desire to not perish just yet. I mean, I was 20 and had barely done anything hugely rewarding. I told myself to get through this so that I might have the chance to do some of those things I had not yet done.

What lessons or messages have you taken away from your experience?

What I got from this was to be kind, patient and generous… AND, enjoy everything about everyone and about everyday. Life is too short to start a huge kafuffle over every little annoyance.

What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?

Not to sound strange or nothin but I’m glad I went through this. It gave me a whole other perspective and made into a much better person than I would have been otherwise. I definitely think my perspective on this matter has changed throughout my survivorship but I’m sure everyone spends extraordinary amounts of time thinking about these kinds of things.

What are some (if there are any you know of) preventative measures that people can take to lower their risk of having an experience like yours?

Hmmmm Don’t contract the SV40 virus! Some studies show that this may lead to a kick start for the genesis of ependymomas. BLAH BLAH BLAH Who the fuck knows, really

ACTUALLY, I don’t think there’s anything that you really can do. Cancer is ugly and it can hit anyone. If you spend too much time avoiding the possibility of cancer, you might avoid some of the niceties of life as well.

Did you attend any support groups during your challenge?

I only started attending a support group about a year after the fact. I had been reluctant to go at first because I was a tough guy and didn’t need it. Needless to say, I eventually realized that I was indeed a normal human being and that I had issues. I suppose that another reason for me not to seek out a support group was that there wasn’t one tailored for younger survivors in the Montreal area. The brain tumour support group that I currently attend is just the right medicine for the soul.

I did/do! It helps me realize that no matter how bad I may think I have had it, there is so much good out there and so much good that has come as a result of this.

How are you connected with Young Adult Cancer?

I was introduced to a young lady ( a very admirable one as well!) that went to the 2005 retreat. She told me to look the website up, because she thought it was just what I needed and what I was looking to do.

I think it’s about bloody time that someone like Geoff takes the initiative to improve the care given to young patients of debilitating and chronic illnesses such as cancer. Congrats Geoff and let me know if I can do ANYTHING, It would be my pleasure.