Jeremi Papineau

Jeremi Papineau - profileAge at Diagnosis: 28. (2004)

Hometown

Casselman, Ontario

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

I was going to my car after work, when I collapsed and had a major seizure, “le grand mal.”

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

April 7, 2004. I was 28.

At what level of education were you at diagnosis?

Full fledge brickmason.

What was your diagnosis?

A grade 3 Oligoustrocytoma brain tumor.

What are your career goals?

To go back to school and become a teacher to teach my trade to high-school students.

What were your first thoughts when diagnosed?

I didn’t think at all. At the time, I was a blank from the shock and relieved at the same time. I was relieved because then I had a reason for the seizure and I was glad that it wasn’t a stroke or anurism. At the time that I went in the emergency room at the Cornwall General Hospital, my seizure lasted all through the night.

How did your family react?

My mother took it well. She was the first one that came to see me at the hospital. She is a strong woman and she didn’t let me see her feelings. She didn’t want me to see her pain because I am her only son and her first born. My father took it kind of hard for the same reason that my mother had; because I am his only son and because he knew a few people that had died of brain tumors (but they had other kinds of brain tumors). My sisters took it hard because I am their only brother. I would say that this cancer brought us closer.

How did your friends react?

They were sad for me and they also said “why him? The most loving friend, the most happy, funny guy in the whole world, the one guy that no matter where he is or what he is doing would be there for us”. The hardest worker that they ever met. I got a lot of those praises and it lifted me up and made me want to get better.

I have a very positive look on life and that has helped my family and friends very much. Instead of them trying to console me, I was consoling them. It’s in my nature, I always make sure that they are happy even in the worst kind of hardships that life throws at us.

I had many people praying for me; basically everyone I know and have ever known throughout my entire life which is about maybe just about over a 1000. Really, that’s how many people that I know. How they came about knowing, that I probably will never know but I’m glad that they were thinking of me.

But I must say that my spirit, outlook on life, and the belief of a higher power led me to believe that maybe there is someone up there looking out for us. If my seizure would of happened minutes later, I would of been driving and would probably had died and taken others with me. And minutes earlier, I was at work so I would of probably would have fallen and died. On that fateful day, I was walking with a co-worker and usually I walked to my car alone so it was a blessed day for me. I would have been angry since the car that I have was only 8 months old at the time. When I took the loan for it, I took the insurance for if I was to become handicapped; so the bank is paying for my car. Woohoo.

What did your treatment consist of?

Medical Side: Once I got to the Civic campus of the Ottawa hospitals, I spent a week in there awaiting my diagnosis and I was released seven days later on Easter Monday. The tumor was located on my right side in my motor and speech area. There is more but I don’t remember; oh yeah, and short term memory.

I had my first surgery in May and they sent some of the tumor to pathology and they told me that it was a grade 2 astrocytoma and that it was the least cancerous of all the brain tumors. I was released 3 days after the surgery. Throughout the summer, I went to my MRI appointments and I noticed that I was having more seizures and they were increasing in magnitude and frequency. They called me in and told me that they’ve noticed that the tumor was growing back at an alarming rate. They told me that I was going into emergency surgery and that I would be awake during the surgery. Of course, I was afraid of the fact that I would be awake. But the only thing that I remember was the anesthesiologist asking if I was okay and when they where putting the staples in (by the way, it hurts more putting them in than removing them). I tried to move but I was in a state of chemically induced paralysis.

They sent a sample of the tumor to pathology for analysis and they found that it was a grade 3 Oligoustrocytoma. When I started to come out of the drugged induced state I noticed that my right side was feeling funny and that I couldn’t move it. I was sent to the short term rehabilitation floor; I was one of the youngest patients there. Most of the people there are hip and knee replacements, people who were in car accidents, and people who were amputated. Since this is a maximum of a 3 week program, I was so determined on getting out of there because after spending 2 weeks in rehab, I would have been in the hospital for a month. I was released after 2 and a 1/2 weeks and it made a month that I was there.

After that, I was sent to the General campus of the Ottawa hospitals for rehabilitation as an out-patient. Here’s the amazing part: I was staying at my cousin’s place while I was in physio and going for my radiation; she is a nurse in oncology for the terminally ill at the General, so I was in good hands and plus her roommate also works with her. It was a low dose of temodal, which meant I had to take it every day and, after the radiation, I went on a high dose of temodal (chemo by pill form) but I was at home during the high dose. The frequency of the high dose was 5 days every 4 weeks. That was last year. I finished it my last dose June of 2005 and I went for more MRIs since and the tumor stabilized; it hasn’t grown and the scar tissue from the radiation and surgeries is actually healing.

Non-Medical Side: Physically, I was feeling drained and tired all the time. I just couldn’t get off the couch in my living room. But when I did, I could only do household work for 4 hours and then I would fall asleep and basically take a 2 hour nap. This was after the first surgery right to last year; now I can do a full day of work. I also had to move back in with my parents because of little income. With my 3 sisters, mother and father, 2 dogs, one cat, and my nephew, it makes for a full house.

Emotionally, I can say that it hasn’t bothered me that much, only the fact that I cannot go back to work because I really loved my work. I couldn’t get enough of it. Side effects after surgery included feeling cold all the time, always freezing (in French we call it frileux), and I noticed that after the first surgery, I was a little more emotional. But only if I would be watching TV and listening to music. They say that it’s normal. Ah well, at least I can cry watching a sad movie, which I never did before so now I stay away from them.

In which hospital(s) were you treated?

When I first collapsed, I was treated at the Cornwall hospital because that’s where I was working at the time. I was transferred to the Ottawa Civic for both surgeries and my radiation and chemo I was treated at the Ottawa General.

What is your current medical status?

The tumor has been successfully stopped.

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

I can’t go through a day without feeling tired. I used to wake up in the morning and 20 minutes later, I would be ready to drive to work and start right away. Now it takes between an hour to 1 and 1/2 hours to be able to start. Emotionally, I feel the same as before I got this. Socially, my friend status is the same as before. I was single for a year before and now it has been 3 years of being single.

After the first surgery, the Ministry of Transportation took my driver’s licence away, which is a good thing, and the letter that they sent me said that if I was caught driving the fine would of been strict (between $5000 to $50,000 and they would seize the vehicle that I would be driving until I would pay the fine in full). I couldn’t go out to meet any women and I was uncertain on how the ladies would react after I told them that I have a brain tumor. I was scared to date and I am still single right now. But the good news is that on May 6th of 2006, I got my licence back.

What is/was the toughest part of your challenge?

Not being able to drive. That was the toughest, loosing my freedom since I don’t live in the city and not even in the town of Casselman. I live out in the country side among the farmers.

What is/was the best part of your challenge?

Knowing who my friends are and knowing how many people actually care about me, my health and well-being.

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

Support. Support from my family and friends, aunts and uncles and cousins. Especially my one aunt and uncle who came to visit me every day at the hospital and their daughter whom I went to live with rent-free during the radiation.

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

Don’t take life and health for granted. Live your life to the fullest. Do not get stressed by everyday common things because tomorrow is another day. You can’t change the circumstances of your illness but look for the silver lining in everything.

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

My thoughts? Well, I can’t say for sure but I would have to say that they haven’t changed. I accepted it then and I accept it now.

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?

There’s really not anything I could have done before because most patients with brain tumors have had it all of their lives and it only manifests itself later in life. Maybe it was where I worked that made it grow even more. I used to work in pulp and paper mills all throughout Canada and I was working with many different chemicals. Maybe that made the tumor grow even faster but who’s to know for sure.

Did you attend any support groups during your challenge?

I am part of the brain tumour support group.

If you did not attend a support group, why?

Yes because I found out that it can affect anyone no matter what age they are; cancer has no specific ages to affect anyone. Lately, I attended a group of people affected with cancer under the age of 35. It was great and very enlightening.

How are you connected with Young Adult Cancer?

It happened when I went to the support ground for people affected by cancer under the age of 35. I think it’s a great web site for young people who are affected by cancer to read testimonials of others like them and I would recommend it to anyone who is affected by the disease.