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.
Thank you for sharing your story! I am so glad you no longer feel alone and I know you will show up for others – it is who you are and who you will continue to be in spite of your illness. Thank you for shining so brightly in this difficult time. We all need a little light right now.
Hello Kerrie, I am so sorry to hear about your diagnosis. It is good to know that at Wellspring you found some others to share this with too. Did you know that Dr. Victor Zpeda, from the Tom Baker cancer ctr, is giving a talk next week, June 22, on the topic of amyloidosis. He is an expert in the field. It is SAMPS, the Southern Alberta Myeloma Society, that is having this talk and you can see more about that from our Facebook page. I hope you can listen to the talk…best wishes…Nancy
I am so proud of you for sharing your story. You are a huge inspiration. I am so glad I can call you one of my best friend’s.
Keep being your fabulous self.
Hi Kerrie. Thank you for sharing your story…it’s very inspiring. I too found Wellspring staff welcoming and helpful during scary, uncertain times. I hope to see you at a future Blood Cancer Support meeting; we have our own little welcoming community. Hugs to you, Marla J
Hi Kerry, Thankyou so much for sharing your story. I’m so sorry that you have had to go through this ordeal. My heart goes out to you and how hard it must have been through the pain and not knowing what was going on. I hope that having support through Wellspring, takes some of the burden from you. You are an inspiration and I can see what a generous and beautiful spirit you are inside and out. Sending hugs and all the positive vibes I can.
I’m an 11 year kidney cancer survivor and past member of Wellspring 😘🤗
Hi Kerrie, my best wishes for your good health and really I appreciate your courage,fight and dedication towards your sickness. I have good hope that some good treatments will lead you to get down the intensity of your cancer and will allow you to go back to your normal life somehow.
I too have been diagnosed with Al Amyloidosis with Cardiac involvement.
I had so many different conditions that were treated but when put altogether led to my diagnosis.
I see Dr. Zepeda (hematologist) at the Tom Baker and Dr. Nowell Fine (cardiologist) at the South Center Campus.
I joined Wellspring but I haven’t attended any events yet. I am glad to here it is such a valuable resource.
Thank you for sharing your journey so far.