Wednesday, September 13, 2023

The Faces of Blood Cancer - MM

As stated on the Myeloma Canada website - 

Every day 11 Canadians are diagnosed with myeloma, yet in spite of it's growing prevalence, the disease remains relatively unknown. To date, there is no cure for myeloma, however advancements in research and treatment are enabling those impacted by myeloma to live better and longer lives than ever before. More research leading to new therapies or new combinations of therapies are required to find a cure.

I’d like to introduce you to Alyssa Dickey who was diagnosed with Multiple Myeloma.

She is a patient advocate, is involved with Myeloma Canada and is part of the steering committee for the Health eMatters conference which helps empower cancer advocates.

You can check out her facebook page Myeloma in the Middle to learn more about her experiences with Multiple Myeloma.

Here is a bit of her story in her own words.

I share my story often, but especially in September. If it helps one person this month I know I have made a positive impact.

In 2010, when I was 32 years old I was diagnosed with multiple myeloma (mm for short). Multiple myeloma is the 2nd most common blood cancer, but many people (including me) have never heard of MM until we are diagnosed with it. So, when we talk about blood cancer awareness, with multiple myeloma there is still a lot of work to do!

Getting a cancer diagnosis at 32 was pretty shocking. But, at the same time, it was very validating. You see, I had been experiencing many symptoms and feeling like crap for several years. I kept making appointments with my family doctor and pushing for "specialists" but no one caught the cancer. 

Women, especially young women still face barriers in healthcare. I just didn't realize it at the time, and I hadn't found my voice yet to speak up for myself and demand answers.

Blood cancers like MM can cause general symptoms. I had fatigue, bone pain, infections, and night sweats which were all more readily explained by other things. As my health declined I knew there was something seriously wrong with me. When my heart was tachycardic and I was fainting from minimal exertion I started showing up at the ER. I was finally diagnosed when an ER doctor realized I was severely anemic and had an extremely elevated protein in my blood (hallmark symptoms of MM).

The scariest part of hearing I had multiple myeloma was also hearing there is no cure. From day one with cancer I knew I would be off and on treatment for the rest of my life, and that my life would be shortened by cancer.

Well, I am happy to say it's been nearly 14 years since I was diagnosed. I've had one relapse but have enjoyed two long periods of remission. After relapsing my treatments were more intensive, with multiple drugs, a salvage stem cell transplant, and then a few rounds of consolidation chemo followed by oral weekly chemo. This lasted for 3 years. I chose to stop my maintenance treatments and have maintained NED (no evidence of disease) for 2 years. With MM the standard care now is for continuous treatment, cycling through meds while we wait for a cure.

If I had to pick one thing that had a positive impact on my recovery I would say it is being active and staying active. Not only do I enjoy my gym routine, and sports like biking and skiing, but the physical and mental health benefits that come with it. Being diagnosed as a young adult I wasn't ready to give up so when the multiple Myeloma comes back my body will be ready.

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