Spotlight on Jackey LaBossiere:
Becoming a Myeloma Advocate
April 25, 2017: 6 hours chemo - 10 days before stem collection.
I was asked to share my story. While it is not anymore special (and perhaps less eventful) than the story of the many myeloma patients I have met, my story is a little different in some ways compared to others.

I visited my family doctor because of recurrent sinus inflammations. My sinuses may have saved my life! A CT scan to eliminate the possibility of nasal polyps indicated lytic lesions in my skull and my blood tests showed low hemoglobin. Multiple myeloma was suspected but additional tests were needed to confirm. How could this be? Not so much that I had myeloma, but that my diagnosis came almost a year to the day after my older brother in Calgary was diagnosed with the same disease?
I knew all about myeloma. I knew about the chemo treatments, bone strengthener treatments, stem cell transplant recovery, maintenance program, inoculation cycle after transplant, low immunity and all the harsh side effects of the drugs that would be prescribed. I knew it all because I had been a long-distance supporter of my brother and sister-in-law for the past year. I shared all the ups and downs, every setback and progress, I lived it through tears, sleepless nights worrying and was extremely grateful for the care he was receiving. There are no words to describe the joy I felt seeing him 6 months after his transplant. Throughout his ordeal he remained hopeful and it was that hope that kept me calm the day I was told I had myeloma. 
On August 10, 2016, I learned I had two compressed discs, a slipped disc and a broken vertebra. I felt excruciating pain, worse than the labour pains I felt when delivering my children. It was by far the worst pain I had ever experienced. It was on August 17, 2016, that I received the official myeloma diagnosis following the specialized test. 

As is the case for each patient, my DNA dictated what would be my response to treatment. When I did not respond well to cyclophosphamide, I was switched to lenalidomide. It meant longer weeks of treatment before my June 16, 2017 stem cell transplant. Ups and downs, twists and turns, a roller-coaster ride that took me to where I am today; I am finally doing well. 
May 4, 2017: 7 and a half hours stem cell collection.
Looking back, I realize the symptoms of myeloma were present before the diagnosis. My family doctor thinks I was probably diagnosed 6 months into being fully symptomatic. Not his fault, but mine for finding a reason to justify every symptom. 

Fatigue? Well, at age 64, I thought fatigue was normal as I was grieving the death of my mother after being her primary caregiver for 23 years. Having faced other family tragedies after my mom died, I felt it was just emotional fatigue and my body needed to rest. I convinced myself to brush it off.

Lower back pain? It was tolerable and only seemed exasperated when vacuuming, so my husband took over that chore. Can’t complain about that, right? If only I had known how bad it would become…

Nausea? Maybe I was just hungry, or perhaps it was just motion sickness.
Shortness of breath while bike riding? I attributed it to being out of shape. Only problem… I wasn’t.

Increased thirst and frequent urination? Well, if you drink, it has to come out, right?

Now that I see the full picture, I realized I should have sought medical attention sooner. I want everyone to know, and every doctor to understand how important it is to examine all potential possibilities further.
I took part in the Multiple Myeloma March in September 2017, 86 days after my transplant and told myself that if I could, I would volunteer for the 2018 March.

I reached out to Myeloma Canada in the fall of 2017 and it became my go-to place for information and support. I wrote letters to politicians at every level of government and I wrote to our local newspapers so that March would be officially recognized as Multiple Myeloma Month by the Manitoba government. I wanted to build awareness and let others know they were not alone.
September 10, 2017: 86 days after transplant finishing the Multiple Myeloma March with my family.
Myeloma Canada encouraged me to create a support group, so on April 20, 2018, here in Winnipeg, I planned a Meet and Greet for caregivers, family members and people living with myeloma. The response was incredible and the first monthly MY Support Group meeting was held in May. I had no idea what others were looking for, but I knew what I wanted and needed. Our meetings are informal, personal, informative and most importantly include caregivers and family members.
September 16, 2018: Co-leader of the Multiple Myeloma March in Winnipeg. 
I knew that the best way to raise awareness about myeloma was through the voice and actions of those living with myeloma. I helped organize the Multiple Myeloma March in September 2018, wrote letters again and was interviewed by newspapers and radio. I continued to do my part in raising awareness and was absolutely thrilled when the Honourable Minister Cameron Friesen proclaimed March 1, 2019, the official Multiple Myeloma Awareness Day in Manitoba.
Living with myeloma has taught me so much about our body’s resilience. It has shown me the depth of compassion and love family, friends and strangers can have for one another. I am amazed by the team of doctors, nurses, researchers and organizations working to treat and possibly cure me. I have learned to find joy in each day; even on sad or bad days, I still manage to find small joys. I have always known my faith would help guide me through life and living with myeloma has now become part of my life. 
Throughout this journey, I felt alone. Even surrounded by caring, loving family and friends, I felt alone. My brother’s journey was different than mine yet talking to him helped. He could understand my emotional journey. My husband David was everything I could ask for in a loving and caring caregiver. Talking to my sister-in-law helped him. She understood his emotional journey too. Those conversations gave us strength, courage and hope. That is why I started a support group; I wanted to share that strength, courage and hope.
February 22, 2019: In Orlando with my husband
This is just the beginning of my story. I hope to be able to share it as often as necessary until myeloma becomes as recognizable as other cancers. I want to share it until myeloma testing becomes a part of routine tests or better yet, until a cure is found.

Sending all of you strength, courage and hope,

Jackey LaBossiere
MY Support Group Leader
Winnipeg, Manitoba
To find a local support group in your area or for information on how to start one,