Prior to my diagnosis, I led an active lifestyle. I was a non-smoker and a non-drinker, and I thought I was doing all the right things to be healthy.
I grew up around marching bands, and played the tuba. I started in the Burlington Teen Tour Band, where I met my wife Kimm. I then helped start the Burlington Top Hat Marching Orchestra. I used to be in a drum and bugle corps that ran around football fields in Canada and the United States with a 30 pound tuba on my shoulder! When I came home after a performance in the fall of 2013, I had muscle spasms in my back. I went to an after-hours clinic, where the doctor suggested I have a chest X-ray.
From this point on, my life took a dramatic turn. It turned out that there was 1.5 litres of fluid in my left lung. I went to the emergency department where I had a chest tube put in to drain this fluid. After testing, I was diagnosed with cancer. A few weeks later, I was having chest and side pains, I had 3 litres of fluid removed.
I was given the devastating news that not only did I have 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. I worried about my two children and how they would cope with losing their father. My daughter was in her fourth year of university, and I worried how this would affect her success in school. My son had recently graduated from university and was starting his career. I was worried how this would affect their lives. But there was nothing I could do about it.
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 because I couldn’t handle having to explain my diagnosis over and over.
I was sent to the Firestone Clinic at St. Joseph’s Hospital in Hamilton, and they inserted a tube to drain the fluid from my lung. A nurse came to our house three times a week to drain the fluid, which stopped about six months later, after which the tube was removed. During this time, I was going for chemotherapy twice every two weeks, having my chest tube checked and cleaned, having an MRI of my brain, and then seeing my brain oncologist every two to three months. I also had a CT of my chest and pelvis every two to three months, with follow-up at the cancer clinic, plus two full-body bone scans in Nuclear Medicine.
I had bone strengthener IV injections every month or so to help keep my bones healthy. I still have these injections every three months. During this time, I developed two blood clots, and after hospital visits, was put on Fragmin and then later I was switched to Coumadin.
It was quite hard on my family; everyone’s schedules had to be juggled to get me to my appointments. This stage of my treatment was extremely overwhelming, and I developed anxiety and depression. Up to last winter, I have been on three different chemotherapies and one immunotherapy. The chemotherapy treatments did help me, but each one ran 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 damaged my body more than the others, and I lost my appetite as well as over twenty pounds. I also had damage to my hearing and now require hearing aids. This is permanent.
After each session of chemo, I would wonder if this would be the last. After each scan to my brain or chest and pelvis, my anxiety skyrocketed as I knew that within a week, I would be yet again sitting in worried anticipation that the oncologist would walk through the door and give me bad news. As a cancer patient, this was repeated over and over again for six years.
My employer gave me the opportunity to work from home and I was paid in full. I worked from home while I went to doctor appointments and treatments. After one year, my employer expected me to return to the office to work, but I was unable to commute to Toronto and work five days a week. I had no option but to go on Long-Term Disability. At that point my employer discontinued my health benefits and wouldn’t let me pay into the group plan. This created even more anxiety.
My oncologist was always keeping watch for new treatments. She found something and was able to send a sample of my cancer to Boston, but unfortunately, this turned out to be incompatible. The people in Boston asked if they could continue using my cancer sample for further testing, and of course I said yes!
When I started my last chemotherapy, I was informed that they had isolated my specific genetic mutation. There was a possibility a drug VITRAKVI would work for me.
Right away my oncologist 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 United States. I don’t know how got it for me, but she did it. I am so thankful to her.
The only side effect that I have right now is fatigue.
I have seen my daughter graduate from university, my son get married, and the birth of my grandson. Over the last eight months I have been slowly getting my life back.
I went from appointments every two weeks to appointments once a month. I have noticed a dramatic lifestyle change. I am regaining my strength, I feel like I have my life back, and I am able to enjoy my family and friends.