By Kerrie Gagne
My name is Kerrie Gagne and at 48 years old, I am living with a rare, non-curable form of blood cancer called AL Cardiac Amyloidosis. This happens when an abnormal protein called amyloid builds up in organs and interferes with their normal function. In my case, my heart was severely damaged, resulting in the need for me to have an implantable cardioverter-defibrillator (ICD) to help my heart function. This type of disease is often hard to diagnose because it is extremely complex and the symptoms are often undetectable.
The time and process leading to this diagnosis was a nightmare for me. First, I endured months of chronic pain, not having a clue what was wrong with me, and often struggling with people not believing the pain was real. Then learning that it’s both cancer and heart related and it could be fatal, hit me like a freight train. What a ride it has been, especially during the pandemic!
In Red Deer, where I reside, there are limited resources, which delayed a timely diagnosis. I had to go to Edmonton for a bone marrow biopsy, then to Calgary for a cardiac MRI, and finally specialists in both centres began piecing together all that has gone wrong with my health.
In the meantime, there have been so many scary moments! For instance, at my bone marrow biopsy consult, I was told I could perish at any moment due to the deteriorated condition of my heart, so the race was on to figure out a treatment plan. It wasn’t until months later, on February 10, 2021, that I was formally diagnosed and started targeted systemic chemotherapy injections two days later. At that time, it was still unclear to me that I had cancer.
In March, I was feverishly searching the web for answers as to what I was dealing with, but information was scarce. Then, just as I was ready to give up, I saw a tweet from AHS about Wellspring Calgary offering an online program for patients and caregivers living with non-curable cancers. I felt an incredible rush of relief and hope that this might be the place for me to find resources and connections. I joined, even though my heart issues got worse and I had to miss some classes. I finally felt like I was not alone.
At Wellspring, I feel connected to a community of people who really care; who feel like family. The staff, volunteers and other members listen, engage, share, and bring me back up when I am an emotional wreck … mentally and physically drained and discouraged. The resources and programs offered at Wellspring have given me a sense of grounding, healing, and hope. This has made a huge difference in my life, as I am virtually alone in this insanely difficult journey.
I am still new to this support community, and have not even put a dent in the list of programs I want to take, but I am doing my best to get well so I can take full advantage of all that Wellspring has to offer.
Wellspring has also helped give me purpose to my days, as I was invited to share my story and advocate for people like me struggling with cancer, coping with the pandemic, and trying to navigate the health system as a patient, especially in southern and northern Alberta and other rural areas where resources are limited.
Now I feel passionate about helping inform and advocating for others, who, like me, are in the fight of their life. This gives me a silver lining and makes me think anything is possible. As long as I’m here, I will try my best to live well, and when I can, I will show up for others.