Not everyone can say those last two things. Over the past seven years, I can count at least 10 times that I was fortunate to have the right people around me or that luck landed at my doorstep. As I approach my fifth anniversary as a survivor, I’m beginning to feel safe in celebrating this milestone.
Looking back, I would have gone to see my doctor weeks sooner, but I didn’t think anything was wrong because I wasn’t in any pain. Sure, I was tired, but I was also overweight and approaching the big 5-0. But there were other clues, such as multiple, unexplained bruises on my arms and legs, bleeding gums and being winded after walking a flight of stairs. If anyone else had told me they had those symptoms, I would have told them to go to the doctor. Well, I did — eventually. When I was too exhausted to make it through even one game of volleyball, I decided it was time to make an appointment.
As I explained my symptoms to my family physician, he didn’t appear to be alarmed. He didn’t even look at the bruises. He simply sent me for some blood tests. It all seemed pretty straight-forward. The call I received the next afternoon telling me that I had an appointment with an oncologist in the next hour still seems surreal. My first response: “Oh, I can’t make it because I’m in Toronto and I took the train and I won’t be back till after seven o’clock.” Then I started asking what was wrong, but of course they wouldn’t tell me anything over the phone. The train ride home was nerve-wracking, to say the least. After I’d found a place for my daughter to stay for the night, I had time to reflect and worry. The good thing was the blood test results came back promptly and whatever was going on was being addressed.
I was admitted to the hospital still not knowing what was wrong. That was a fretful night: What if I didn’t make it? Would I get to see my daughter grow up? My marriage wasn’t all that stable and my husband and I hadn’t been able to agree on a guardian, so we had never gotten around to creating a will. I hadn’t even thought about how I was going to keep paying the bills if I couldn’t work.
Next morning, I learned that they suspected I had leukemia — of which there are about eight different variations. They did a bone marrow aspiration at 10 a.m. and by five that afternoon the results confirmed that I had the rare, but highly treatable form of leukemia, a type of cancer that affects the blood and bone marrow, known as acute promyelocytic leukemia (APL).
My oncologist was on top of this immediately. She arranged for my chemotherapy treatment to start the next morning — 24 hours a day for seven days, recuperate for three weeks and then repeat twice. Fortunately, I live in a city with a cancer treatment centre. My friends and family were nearby and able to support me and my daughter through this ordeal. Within 48 hours I went from playing volleyball to starting my road to recovery.
Part of my treatment also included a number of infusions of blood and platelets. My A+ blood type is fairly common and there never seemed to be a shortage of supply. Thanks to all the blood donors out there!
Knowing that I would be able to fight and survive, I started to process what was happening, and began to worry about everything else. How would I pay the mortgage and other bills while I couldn’t work? Fortunately, my employer provided a benefits package with short- and long-term disability coverage. My manager assured me that she would get the paperwork started right away. I had my laptop and a wi-fi connection at the hospital that I used to pay my bills online. I also worked with a wonderful group of people who quickly arranged for a couple of home-cooked meals to arrive at my door each week when I was at home recuperating.
Six months after my last round of chemo, I returned to work and things were good. My hair was growing back and all I had to do was have monthly blood tests to monitor my progress and continue taking my meds that cost around $375 for 100 pills — 10 a day, every day for a year. Fortunately, my medical benefits capped my out-of-pocket expenses at $1,000 per year. After that, the meds were totally covered.
About eight months later, an abnormality appeared in my blood work and the fears returned. Another bone marrow aspiration confirmed that I had relapsed. Not uncommon, but not what anyone wants to hear. Since the relapse was in its early stages, my oncologist suggested a different, two-step course of treatment.
The first step involved daily arsenic treatments to put me back into remission. They say “everything in moderation” and this is even true of arsenic. While this treatment isn’t new, it hadn’t been done at my hospital before and wasn’t covered by government health insurance. Did I tell you I love my oncologist? She went to bat for me with the board members at my hospital, the Grand River Regional Cancer Centre, and convinced them to conduct the treatments there.
So every day for 60 days, I went to the centre and was infused with a dose of arsenic. I was spared the added stress of travelling out of town and being separated from my family and friends. The nurses laughed when one day, I watched the DVD “Arsenic and Old Lace” throughout my treatment. At the end of the 12 weeks, another bone marrow aspiration showed I was in remission.
The second step was for the doctors to perform an autologous stem cell transplant. In plain language: I was my own donor. During a month-long stay at the Princess Margaret Hospital in Toronto, my now-healthy stem cells were harvested and frozen. Then I was given high doses of chemotherapy and radiation over three days to destroy any remaining blood cells in my bone marrow. Next, my harvested cells were transplanted intravenously back into my bloodstream. Within a couple of weeks, my stem cells reproduced enough new healthy blood cells and I was sent home to regain my strength and build more cells.
I often think back and wonder what would have happened if I hadn’t had any health insurance. I’m very thankful that I’d opted for the highest level of disability coverage available to me; it made it seem like my paycheque continued while I was recovering. I didn’t have any critical illness insurance at the time, so without other health insurance coverage, I would probably have had to dip into my RRSPs to cover the medical expenses, pay the mortgage and keep up with the household bills. I can’t imagine what people without benefits go through when faced with a critical illness. I believe the stress and worry would have impaired my ability to recover as well as I did.
About a year after my transplant, I returned to work. I’ve since changed jobs, finding another one with a benefits package, and was sure to sign up for the critical illness insurance offered through my employer. I take great comfort in knowing that I’m covered with my company benefits, including travel insurance, but if I didn’t, I’d make sure I bought my own coverage.
Today, my daughter is thriving in university and I’m saving for a Caribbean adventure with my friends to celebrate my fifth year in remission. I’ll take along a novel bookmarked with the train ticket stub from the day I got the fateful call. It will remind me how lucky I am.