I was diagnosed first with Smoldering Myeloma in 2018. After a second opinion I was more accurately diagnosed with Monoclonal Gammopathy of Undetermined significance (MGUS), which is also called a Monoclonal Paraprotienemia.
My journey began in 2017 when my primary care doctor sent me to a hematologist/oncologist, because my hemoglobins were high and he thought I had Polycythemia Vera (PV). While I waited for my appointment, I did research on PV to learn as much as I could. I also found out my maternal grandmother had it. After many tests and an M-spike, I was told I didn't have PV, but possibly multiple myeloma. I then had a biopsy, which showed MGUS but favorable of developing myeloma in the future. I then switched my focus and research to finding as much as I could about MGUS and myeloma.
One of the things that helped me most during my diagnosis was Jenny Ahlstrom and the Myeloma Crowd. I found the Myeloma Crowd in my research, and started following Jenny. I read that she was doing a 50-state tour regarding HealthTree, and found she would be in Las Vegas, Nevada. I couldn't wait to meet her - she was a great inspiration to me. I also wanted to find out more about HealthTree. I spent over an hour with Jenny and her family hearing her story and learning more about the Myeloma Crowd and HealthTree.
As I look back during this time one thing I wish I had known early on is the difference between a myeloma specialist and an oncologist. I am on my third oncologist/hematologist, and they still don't know how to treat myeloma, SMM or MGUS patients. In Las Vegas we do not have a myeloma specialist. I travel to City of Hope in California once a year to meet with a myeloma specialist there.
I have found that staying positive helps me live well with myeloma. A positive attitude, along with having a strong support system is a huge help to living your best life. I work to focus on these things in my own life.
The choice to become a Myeloma Coach was an easy one because I love helping others. Helping someone navigate through MGUS or Smoldering Myeloma, and listening to them makes me feel like I am making a difference in their lives. One of my favorite parts about volunteering with the Coach program is the people involved behind the scenes at the Myeloma Crowd. They provide the best resources, HealthTree and physicians who believe in the work they are doing.
We have the best support system through the Myeloma Crowd foundation and Myeloma Coach program. This is what makes us stronger. Being stronger together means never being alone.
Darlene is a Myeloma Coach dedicate to helping others. She lives with her family in Las Vegas, NV. You can find and connect with her and other Myeloma Coaches at: www.myelomacoach.org.
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.