June 2025

“Strong like an ox” 

For most of my life I was blessed with good health and lots of energy — "strong like an ox,” as I used to say.

I love the outdoors, and when my daughter was a Brownie, I became a Guide leader and stayed as a leader for many years. I learned to camp, hike, and travel locally and internationally with girl and adult members. Joining the Guiding movement taught me valuable outdoor skills and I formed long-lasting friendships. 

I had a career as a pharmacist specializing in rheumatology and orthopaedics until 2010 when I decided to take early retirement to care for my first grandson. Friends asked me if I missed my job and my answer was, surprisingly, a resounding NO. I knew the gains of time well spent would go far beyond working a few more years for a financial advantage.

It was probably one of my finest decisions. Who knew in less than 10 years, I would meet my nemesis called multiple myeloma. I enjoyed my profession, but I am not defined by it. Likewise, myeloma does not define us in that one singular aspect.

Prior to my myeloma diagnosis, life was very good.

With retirement from work, there was freedom of time. Time for friends, family and travel; time for exploring the world at home and abroad. My grandson was my little travel buddy. We would travel by bus and train across the city, eat, explore, romp, and just enjoy the many amenities the city has to offer.

It was a happy decade. My parents, who were in their 80s then, still lived independently and were reasonably healthy for their age. However, I knew they would need more care with the passage of time.

We have all heard that change is inevitable. But still, one is never fully prepared when those changes happen in succession. It started with my father, passing away at the end of July 2019 after a very brief illness at age 96. Unexpectedly, in May 2020, 8 months later, my 92-year-old mother passed away suddenly from a stroke.

At the time, we were in the midst of the global COVID pandemic that generated so much fear and anxiety. We were truly living through unprecedented times, and life was topsy-turvy. Prior to her passing, my mother had made me promise not to take her to the hospital “no matter what” happened. In hindsight, it was a fortuitous directive from her, as she would have died alone in a hospital. We had a small COVID funeral for my mother consisting of my siblings and our respective spouses. We were a congregation of 9 people including the priest. This was in sharp contrast to my father’s funeral 8 months earlier. It was the first time we were offered live streaming of the service to families and friends. The pandemic had moved the technology ahead in leaps and bounds into normal acceptance. 

Life is never dull. Just as we thought we could take a small breather, myeloma hit me.

Bill, my husband, and I were out for a quick stroll when I suddenly collapsed to the ground with intense back pain. At first, I thought I might have pulled a muscle doing the heavy lifting during my mother’s last days, but the pain did not ease with rest.

Finally, under strong urging, I had a blood test, and it revealed a hemoglobin level of 50 that resulted in a reluctant trip to Emergency at Mount Sinai Hospital in Toronto (remember, this was peak pandemic time, so no one wanted to go to a hospital). The day was June 25, 2020, one day after my birthday. As luck would have it, I was seen by a very astute ER doctor who diagnosed me with multiple myeloma almost within half an hour of seeing me. I had only heard of this cancer once before from two friends whose fathers died from the disease decades ago. 

My ER visit resulted in a 2-week stay at Mount Sinai Hospital for diagnostic tests, then another three weeks at a rehab hospital. It was a surreal time as COVID protocols hung heavy all around. Bill was provided with a compassionate pass to visit me. Otherwise, it was strictly no visitors.

All the diagnostics confirmed my myeloma diagnosis and that I was acutely sick. My bloodwork was wildly out of whack. I lost count of the number of transfusions and the bags of electrolytes I received. From Mount Sinai, I was wheeled on a stretcher to Princess Margaret Hospital for consultation. Induction therapy started almost immediately and was followed by an outpatient autologous stem cell transplant. By mid-January, the treatment was complete, and pomalidomide maintenance therapy began.

Unfortunately, the treatment was short-lived. From there, I moved onto daratumumab, dexamethasone, and bortezomib. That too was short lived, and now I am on a cocktail of carfilzomib, dexamethasone, and cyclophosphamide. It looks like I will need another therapy change as the numbers are climbing. CAR-T is on the table, but I am not sure when.

What I do know is I am in good hands. Relapses are not due to the lack of expert care and treatment I receive but the nature and stubbornness of my disease. Amidst all this treatment, I think to myself how do ordinary, non-medical people cope with all the drugs and treatment modalities? I have a pharmaceutical background and could barely keep up with it. When I was undergoing the stem cell transplant, I actually drew a 24-hour clock and marked each drug against the time to keep things straight in my head. Even now, I am grateful to the myeloma pharmacists at Princess Margaret who created a monthly medication administration calendar for me. 

I have also had other misadventures, including an atypical subtrochanteric femur fracture from the Zometa treatment used for bone-strengthening. The Zometa has since been discontinued. Only a small number of patients experience this adverse event, and I happen to be one of the statistics. 

No one ever wants to receive a cancer or any other life-limiting diagnosis. It pauses and disrupts life in a huge way for the patient and all the loved ones around the patient. For me, it presented a drastically changed reality. As the initial shock wave passed, a new reality set in. I have had a few years now to adjust to a much more peaceful and contemplative stage in life.

The diagnosis has forced me to face my own mortality. I am no longer running from event to event completing a to-do list. Instead, there is time to think about what is important in life and what is not. Between lulls in treatment, there is time to be reflective, plan for the eventuality of life, and set finances and all other affairs in order. This includes having difficult discussions with family regarding desires, wishes, and final arrangements. Someday is now! When this process is done, the relief is immense and the power is transformative and almost curative. There is peace and contentment in the stillness. The Divine has a plan, and all is as it should be.  

Myeloma opened me up to an enormous world. Drugs, for example, that one could hardly pronounce, let alone understand the mechanism of action. But I am not alone. I have my family, my very loyal and caring spouse, Bill, and my friends and neighbours who pop by to say hello. Because of myeloma, I have also met so many dedicated and inspirational people who help me navigate this new world. My wonderful care team at Princess Margaret guides and monitors my progress. My fellow myeloma friends from the Toronto & District Multiple Myeloma Support Group have become invaluable and have shown me what the gold standard is on how to live life well with courage and vivacity. Indeed, my own tapestry of life has been greatly enriched by everyone’s stories and experiences.

There is time to enjoy the quiet, appreciate life more fully with gratitude and dive more deeply into my own spiritual beliefs, putting faith and hope in balance, warding off unnecessary anxiety and fear. It is not a bad place to be. 

Thank you,

Ellen

Myeloma Canada charitable number: 862533296RR0001