Editors Note: This article was originally published in the June 2022 issue of Conquer Magazine.
If you are a patient with multiple myeloma or a caregiver of a patient with this cancer, you know what a whirlwind of emotions comes with the announcement from your oncologist hematologist that you have multiple myeloma, and then the overwhelming flood of information thrown at you from that day.
To top that, there are the decisions and choices related to the treatment that must be made rather quickly once you are diagnosed. Doctors and physician assistants do not understand the nuances of this disease, or what kind of information a newly diagnosed patient with multiple myeloma or a patient with relapsed disease needs at different phases of their treatment. This is where a Myeloma Coach comes in.
Multiple myeloma is a genetic disorder of the B plasma cells in your blood. These cancerous B-cells overwhelm your bone marrow, and you may never know you have it, until something catastrophic happens (such as broken bones or kidney disease), or by accident, through a routine blood test.
That is how I discovered that I had multiple myeloma in 2018. No warning. No “Let’s wait and see.” No surgery to remove it. Just that I now have an incurable cancer that normally comes back after treatment knocks it down.
I was in emotional shock. My oncologist had only seen 5 patients with multiple myeloma in his large practice, and “Dr. Google” scared the pants off me.
So, I started researching on my own, and I was able to find a specialist not too far away, who could work with my local oncologist. But what an exhausting, frustrating, and frightening experience this was!
For these reasons, I became a Myeloma Coach with the Myeloma Crowd (www.healthtree.org/myeloma/coach). The Myeloma Crowd is a division of the HealthTree Foundation, a patient-driven, nonprofit organization that empowers patients with rare diseases (such as multiple myeloma) at each step of their disease journey—from diagnosis, through education, care, and on to a cure, if cure is possible.
All Myeloma Coaches are patients or care partners who assist newly diagnosed patients with multiple myeloma or their caregivers. This is a peer-to-peer resource to help navigate the rough waters around the emotional, financial, resources, and support side of multiple myeloma. We do not advocate medical decisions, but we can help guide you to make informed decisions with your medical team.
We can help you understand the 136 acronyms used in multiple myeloma treatment and diagnosis; help find a specialist; help patients understand their lab reports; find a clinical trial; how to find grants and financial support for treatments, travel, and copays; suggestions on how to deal with family issues; or how to alleviate or lessen the side effects of the treatments.
And what you should pack for the 2-week hospital stay for stem-cell transplant, and how to prepare your home for your recovery.
We can also just be there to say, “I understand.” Because we do understand, we’ve been where you are now, and we can help you get through it as well.
To find a Myeloma Coach, visit www.healthtree.org/myeloma/coach and choose from more than 150 coaches, depending on your needs. You could choose more than one coach to cover all the areas you need.
Sally Torgeson is a Myeloma Coach living in Zionsville, IN
about the author
Rozalynn Hite is the Myeloma Coach Director and wife of myeloma patient Richard Hite. Rozalynn is an occupational therapist and mother of three beautiful children.