When I first talked to the oncology nurse I said, “All I want to be is a grandpa”. Six and a half years later here I am a papa!
Prior to my diagnosis, I led an active lifestyle, didn’t smoke or drink and I thought I was doing all the right things to be healthy.
I am an amateur musician, play tuba and love performing in front of crowds in parades and shows at football stadiums. This all changed though when I came home from a practice in the fall of 2013. I had horrible back pain and went to the doctor, had an x-ray and there in my left lung was a white mass.
It turned out to be 1.5L of fluid in my left lung. I went to emergency where I had a chest tube put in to drain this fluid. After testing, I was diagnosed with non small cell lung cancer. A few weeks later I was having chest and side pains again and had 3L removed for a second time.
During this time, I was given the devastating news that not only did I have lung cancer but I had stage 4 Non Small Cell Lung Cancer that had metastasized to my brain, bones and liver.
I was shocked and overwhelmed with sadness by this news. I felt that I had months to live. Right away I worried about my wife and what would she do with me gone. I worried about my 2 children and how they would cope with losing their father.
My daughter was in her 4th year of university and I worried how this would affect her success in school. There was nothing I could do about it. My son had recently graduated from university and starting his career. I was worried how this would affect their lives. I worried about my career and how this would affect my position at work. How would I be able to deal with all that was ahead of me? My life felt like it was spinning out of control. This was not only affecting me but my entire family.
I went offline and I didn’t contact people, as I couldn’t handle having to explain my diagnosis over and over. My life was way too stressful at the time and it took me 4 years to begin socializing again. I am still running into old friends who didn’t know what I have been through.
I was sent to the Firestone Clinic at St. Joseph's Hospital in Hamilton for a drainage tube. A nurse came to our house 3 times a week to drain the fluid. The fluid stopped about 6 months later and the tube was removed. During this time I was going for chemotherapy twice every 2 weeks, having my chest tube checked and cleaned, having an MRI of my brain and then seeing my brain oncologist every 2-3 months. I also had a CAT scan of my chest and pelvis every 2-3 months and 2 full bone scans. A week did not go by without at least one appointment. I had bone strengthener IV injections every month or so to help the healthy bones. I still have these injections every 3 months.
It was quite hard on my family with juggling everyone’s schedules to get me to my appointments. This stage of treatment was extremely overwhelming and I developed anxiety and depression. I have been on 3 different chemotherapies and one immunotherapy. The
chemotherapy treatments did help me but each one did run its course. I did not respond to the immunotherapy.
I was lucky as I tolerated the chemo quite well. The last treatment I was on though did damage my body more; I lost my appetite as well as over 20lbs. I also had damage to my hearing and require hearing aids now. This is permanent. With mobility limitations my right hip won’t allow me to do common tasks such as putting on socks and shoes.
I had brain radiation using the cyber knife 2-3 times and full once winter 2017. I also had a few sessions of radiation on hips and lower back for pain relief and once on my lung. I have cognitive disorders including dizziness and short-term memory loss.
After each session of chemo infusion I would wonder if this would be the last one. After each scan to my brain, chest and pelvis, my anxiety skyrockets, as I know within a week I will be yet again sitting in worried anticipation that the oncologist will walk through the door and give me bad news. As a cancer patient, this is repeated over and over again for the last 6 1/2 years.
I worked from home quite well the first year but my employer cancelled the accommodation and took me off our company health plan. I started Long Term Disability.
My Oncologist was always keeping watch for new or future treatments. She found something and was able to send a sample to Boston. Unfortunately this turned out to be incompatible, but the staff in Boston asked if they could continue using my sample for further testing and of course I said yes! We got a call a short time later and were informed that the hospital in Boston had isolated my specific genetic mutation NTRK. This is a very rare one. There was a possibility that a new Targeted Therapy called VITRAKVI (Larotrectinib) would work for me.
My oncologist right away started to work on getting approval for me as I was running out of time with the chemo that I was on. This drug had not been approved in Canada but had been in the US. It had great success in the US, which I am sure helped with the approval process. I don’t know how my oncologist did it but I am so thankful to her. After a 2-month rest from chemotherapy I started the VITRAKVI April 2019. Right off the bat it showed great results. My first MRI of the brain and a CAT scan of my chest and pelvis showed no new cancer, some shrinkage and some tumors had disappeared.
My body is slowly changing but I have some permanent damage from chemotherapy such as hearing loss, balance issues and some cognitive problems such as short-term memory loss. The only side effect that I have right now from the targeted therapy is tiredness. We are investigating if it might be contributing to the dizziness.
I have seen my daughter graduate from university and teachers college, my son getting married and the birth of my grandson. Over the last year I have been slowly getting my life back. I still have a way to go physically and mentally to be able to care for myself. I am now enjoying an increase in physical activity and time with my grandson as he grows up.