May 2025

My name is Alyssa Dickey, I and was diagnosed with myeloma in 2010 at the age of 32. 

I have been living with multiple myeloma (MM) for 15 years — essentially one-third of my life. I achieved long remissions following my initial diagnosis and autologous stem cell transplant in 2010, and my relapse and salvage transplant in 2018 but MM has tremendously impacted my life. Life has been challenging, and I feel like I have had to do many things the hard way — from building my career to having a family.

Despite the challenges, I am proud of overcoming adversity, working hard, and experiencing many life moments and I hope sharing my story can inspire others to keep living life despite this diagnosis!

I was diagnosed with MM 6 months after graduating from the University of Toronto. I had never heard of myeloma before getting diagnosed with it. When I returned to school at 25 years old to earn my degree in Industrial Relations I was already working full-time as a legal assistant. A few months into a new job and 6 months after graduation, I discovered my fatigue, anemia, infections, and night sweats were not due to stress as the doctors had told me. After years of seeing specialist after specialist and getting no answers for my mostly vague symptoms, I was finally diagnosed with multiple myeloma at St. Michael's Hospital in Toronto. 

It took three ER visits before someone recognized my symptoms were not a virus or iron deficiency (which I had been told previously). My MM specialist confirmed that I had been misdiagnosed earlier, and that I likely had active myeloma for at least two years before being diagnosed. My m-spike at diagnosis was 100 g/L, indicating I had been living with MM for a long time. 

The symptom that led to my diagnosis was hyperviscosity, where your blood becomes too thick from cancer cells to flow properly. It causes some specific symptoms like neuropathy, blurry vision, headaches and bleeding. I also had other ‘CRAB’ [elevated Calcium, Renal/kidney damage, Anemia, Bone damage] symptoms, including anemia and bone lesions in my ribs, spine, and skull. 

I was 32 at the time. Retirement was not an option since it was so early in my career, and I had no savings to live off. A mentor helped me secure a new HR role in 2014. At the same time, I knew my MM was relapsing (there was a bio clinical relapse in my bloodwork but no symptoms yet).

I felt guilty, unsure of how long I could work. Simultaneously, I was doing fertility treatments using embryos we banked in 2010 before my 1st transplant. After a year of trying, and on my last try, I got pregnant, and we welcomed our baby (Elliot) in June 2015. It was a high-risk pregnancy due to my cancer, but my baby was full term and healthy and is turning 10 years old in a few weeks!

Parenting through cancer has been incredibly difficult, but I'd make the same choice again. In the early years, daycare germs impacted me a lot. 

I had to advocate for myself before my second transplant in 2018, opting for an inpatient procedure due to the logistics of isolating with a then 2-year-old. A few months later, I ended up in isolation with a septic infection from Hand Foot and Mouth disease brought home from daycare. This, along with frequent sinus infections, led to four inpatient hospital stays the year following my second autologous stem cell transplant. IVIG (immunoglobulin (antibody) replacement therapy) treatments boosted my immunity significantly. 

Each phase of parenting has had its challenges and rewards.

Now that my son Elliot is older, we enjoy activities together, like skiing every Saturday in the winter. My husband Matt and I recently celebrated our 10th wedding anniversary with a trip to Jamaica with Elliot, who was the perfect age.  

Making memories is important as I know my life is impacted and I want to leave something to be remembered by.

We ask Elliot if he remembers when I was bald, or when we would take him with us to chemo appointments or the Magic Castle at Princess Margaret Hospital and he honestly does not remember. Five years is a lifetime ago for him, but for us parents we remember clear as day all the little details. Every year I put together a photobook and always print an extra copy to give him one day of all these memories.  

I stopped working in 2018 for my relapse treatment. By February 2020, I was ready to return to work, but the pandemic struck, making it impossible due to my high-risk status. In 2022, I stopped maintenance treatments, my immunity improved, and I began the process of returning to a similar role I had left in 2018. Before stopping my maintenance therapy (Ninlaro), a bone marrow biopsy showed I was MRD (minimal residual disease) negative status, which made me feel confident about stopping.

I've maintained “no evidence of disease” status for three years now and have enjoyed this long treatment break.  

Re-acclimating to full-time work has been difficult. My first week back, I fell down my basement stairs and broke my ankle in three places, requiring two surgeries and permanent hardware. This is why I say I’ve had to do everything the hard way! Returning to work was challenging enough but adding in the severe ankle injury on top of it, I think many would have given up but not me, I stuck it out. I’m not letting myeloma win this time. 

I now work hybrid, splitting time between home and the office. I couldn't physically manage five days in the office with a commute. Some days, I come home drained and spend the night resting so I can make it back to work the next day. Those days I rely on my husband to handle things at home because I just physically cannot. 

Recently, I achieved a long-term goal of earning my CHRP (Certified Human Resources Professional) designation. I had planned to write the exams after graduating university, but my cancer diagnosis intervened. When I learned the 10-year cap on education was cancelled in 2023, I spent 2024 preparing for the exams. I'm happy to share that I passed both with high marks. Now, I proudly display my certificate as a sign of not giving up! 

I learned about Myeloma Canada shortly after my diagnosis through their print resources. The "Understanding Your Blood and Blood Tests" InfoGuide taught me a lot about my specific type (IGG Lambda Standard risk). In 2010, we didn't have patient portals or MyChart [in Ontario].  

Over the years, I've become more involved as a volunteer and advocate for Myeloma Canada. In a way, I’ve grown up with MM as Myeloma Canada has grown into the amazing organization it is today.

Volunteers at the Myeloma Canada Ride in

Niagara in May, 2024

I've attended several in-person support groups over the years, but the logistics have been challenging, mostly due to the location of the meetings and where I live (an hour drive each way). However, the online Myeloma Canada support groups on Facebook have been incredibly welcoming and informative…no commuting required!  

In 2024, my husband and I volunteered at Myeloma Canada's Grand Rappel event in Toronto. We didn't plan on rappelling over the side of the Hilton hotel, but we did it, and it was an awe-inspiring experience! Myeloma has always been part of our marriage, and the community events remind us that we are not alone in it.  

Garret and me going over the edge at the Myeloma Canada Grand Rappel in downtown Toronto in July 2024

I encourage everyone to be involved in the myeloma community. Whether it’s by joining an in-person support group, a virtual group or an event like a Multiple Myeloma March or the Myeloma Canada Ride.

This community is full of amazing caring people. Though our stories might not look the same, we get it.  

Alyssa 

Myeloma Canada charitable number: 862533296RR0001