I eventually went to my doctor who had been my primary care physician for almost 17 years, but my complaints were dismissed, although I was sent for a shoulder ultrasound in October. The technician immediately called my doctor to request an x-ray. When the results came back, I was told there was a “small” shadow in the area of my right shoulder blade (2 cm) and was referred for an MRI. I explained that it was now more than just my shoulder. My doctor dismissed this too and said he’d look into referring me to a shoulder specialist. No other tests were done. I never got the referral, and March 2019 was the earliest MRI I could get.

What happened next saved my life. The walk-in clinic called, and I met with a young doctor who was likely just out of medical school. He was wonderful and is the reason I am still here today. He listened to my story, explained I had a fractured rib, and sent me for specific bloodwork and a full-body bone scan.

I met with Dr Trudel at Princess Margaret Cancer Centre (PMH) on February 26. She was incredible! Patient, direct, compassionate, and supportive. I knew I was in good hands.

We started my CyBorD (cyclophosphamide, bortezomib and dexamethasone) the next day. Further tests confirmed I had markers for high-risk myeloma, so tandem transplants were planned. The next few months were a whirlwind of treatments, surgeries (two kyphoplasties, vertebroplasties, and a sacroplasty to repair all the damage in my spine and sacrum), and stem cell transplant preparations.

Family and friends sent meals, gifts, played board games with me, cooked and cleaned at my apartment. I am so very blessed to have the support network that I do.

At PMH, I did what I could to brighten my day and the world around me: games with chair neighbours during chemo, cross-stitch projects, sparkly earrings, colourful leggings, bright hats and headscarves as my hair started to thin! I was handling my treatments well with few side effects.

Early in my journey, I went online for information. I found Myeloma Canada and attended their National Myeloma Conference in April 2019. I learned a lot and was introduced to members of the Toronto & District Myeloma Support Group. Their support means the world to me; they are now part of my extended family.

The nursing team was amazing and kept my spirits up. I tried to do the same for other patients. So, when transplant #2 chemo infusion fell on Halloween (pre-Covid), I dressed in costume and handed out candies with my dad, decorated my table and chair in the Day Hospital and took silly pictures! In December, I wore Santa hats and finally rang the bell at the end of my main treatments on December 10, 2019!

It hasn’t all been fun and games. After my second transplant, my body recovered more slowly than I expected, and there were many days of anger and frustration. I went back to work in February 2020, and then the world shut down in March. In many ways, that was a blessing for me. I worked from home for the next few months, and I have no doubt my health is better for it.

I am in an unusual age bracket for this disease, which is difficult. Many folks with MM are older, some are retired or did not return to work. Their caregivers are their partners or children, not their parents with their own health concerns. There are support groups for “40 and under” but I was 43 at diagnosis. There are days when it’s hard to find connections with those my age who have faced similar battles. I have great support: friends, family, colleagues, and healthcare workers. I started seeing a therapist, exploring mindfulness practices, and spending a lot of time with my 19-year-old nephew so I can continue to be a “cool” aunt and teacher!

I have been a guest speaker in schools and local community groups. I have lived in smaller communities and know the struggles accessing medical supports, so I use my social media platforms to share information about myeloma during Myeloma Awareness Months. This past January, I started working with Rinat Avitzur and Tanya Zigomanis (Ontario Patient Advisory Council reps, and members of our support group) to have March declared Multiple Myeloma Month.

I connected with Mayor Tory's team in Toronto, and we succeeded in having March 31 proclaimed Multiple Myeloma Awareness Day!

My journey on this myeloma roller coaster will continue. I have much more to do and I will look for the laughs and keep wearing sparkly jewelry and crazy colours through it all!

Yours,

Jocelyn