What is Myeloma Action Month?

Even though I’ve been living with multiple myeloma for 4 years now, I had to look up what Myeloma Action Month is and how it is different from Myeloma Awareness.

I learned that the International Myeloma Foundation (IMF) started Myeloma Awareness Month in 2009 to raise awareness for this rare and incurable blood cancer. They renamed it Myeloma Action Month in 2016 to better reflect an action- and education-based approach to help those affected by multiple myeloma.

Action to impact the myeloma community

While the IMF is doing their part to educate the myeloma and medical communities, they encourage us to take action of our own. And by action, they mean whatever action we wish that positively impacts the myeloma community. This year, the IMF is focusing on actions that “draw attention to the disease and inspire a culture of hope and resilience.”

Why draw attention to myeloma?

Many of us were diagnosed with myeloma after years of vague symptoms, including fatigue and pain.  I went undiagnosed for years because I was a 47-year-old white female who did not fit the profile of a typical myeloma patient. I was only diagnosed after I fractured my femur, and a quick-thinking orthopedic surgeon ordered an MRI.

Despite the delayed diagnosis, my bone marrow was only around 30% myeloma cells, and I achieved complete remission within 9 months of diagnosis. Not everyone is so fortunate.

Who needs to know about myeloma?

By raising awareness to the larger community, we are helping to save and extend precious lives. If people know about myeloma and its symptoms, they can ask their doctors to order simple tests. If doctors knew more about myeloma and the typical symptoms of pain, infections, and fatigue, they could diagnose patients earlier and potentially save years of pain, suffering, and expense.

Doctors simply do not know enough about myeloma. In the last few years, several doctors (not my oncologists) have confused my myeloma with melanoma, once while I was on the operating table! It is much more than just a slip of the tongue of two similar words. They are both cancers, but they are very different diseases that require very different treatments!

A culture of resilience and hope

A myeloma diagnosis is never good news, but there are more reasons than ever to be hopeful. Myeloma treatments have progressed so much in just the last 10 years. We have so many options for treatment and so many combinations of those treatments to try. We also have numerous organizations that help us navigate our way through diagnosis, treatments, financial assistance, clinical trials, and potential cures.

But let’s face it. The life of a myeloma patient is anything but easy. We suffer from debilitating fatigue, neuropathy, pain, and other side effects that affect so much of our lives. But I know from our community here at Blood-Cancer.com and other myeloma communities that we are indeed a resilient bunch. We continue to show ourselves and others how to live beyond a myeloma diagnosis. We can help the newly diagnosed find the same resilience and hope that others have so graciously shared with us.

What does action look like?

The Multiple Myeloma Action website offers several myeloma action frames to use on social media. But if social media is not your thing, take action that feels right for you. Here are a few possibilities:

• Donate to a myeloma research foundation.
• Join a myeloma support group, in person or online.
• Share your myeloma experience with others here on Blood-Cancer.com or through social media or a blog.
• Reach out to another living with this disease. Call, send a card, or leave a comment on a post or article.

Take action for YOU!

Most of all, take action for yourself! Take up a new hobby, read fun and inspiring books, or rescue a shelter animal. Try to find ways to improve your quality of life with myeloma. Drink more water, eat more veggies, walk a little more, and learn to meditate. See if clearing out clutter makes more space in your life for the things that really matter. Whatever action you take is enough! And if you would like, feel free to share it or any other actions you can think of in the comments!