In 2019 I presented with dark purple spots on my legs, and my neurologist decided to do lab work. My labs showed a high IGM level, so I was then referred to a local oncologist who did a bone marrow biopsy. It was at that time that I was diagnosed with Waldenstrom’s Macroglobulinemia (WM), a rare type of blood cancer. I was confused and concerned but knew I had to take it day by day.
Following that diagnosis, I sought out a more expert opinion and was set up with a week of tests at a cancer center in Atlanta, GA. My cancer diagnosis was confirmed. Since that time, and over the past 11 years, I have been to cancer centers in New York City, Greenville NC, New Haven CT, and Boston MA. Each trip brought different results as WM is treatable but not curable.
Anemia is one of my symptoms which makes me tired very easily. I have a hard time walking due to neuropathy and swelling in my feet and ankles. I have a hard time being on my feet for a long time. I bruise very easily and have to be careful not to bump myself. I have to take it easy day to day and am not able to work like I used to, which creates financial hardships. My work family has been supportive of me throughout the years.
Due to cuts made by the federal government, some of my treatments and medications have been put on hold. My desire to help others led me to advocacy work with the Biden administration. On 8/29/2023, I was asked to introduce President Biden on the anniversary of the Inflation Reduction Act. On another occasion, I was a panelist discussing the advantages of the $35 cap on insulin. I was also President Biden’s guest at his State of the Union Address before Congress. With today’s healthcare cuts, I continue to advocate for lower drug prices and access to medical care, which must happen without federal funding cuts.
I would tell others to take it ‘one day at a time’. As far as the future, I’m hopeful to find the necessary treatments as my legs and feet are getting worse.
ABOUT THE AUTHOR
Steven is 73-year-old who holds 3 Master’s degrees. He worked in retail most of his career until switching to sports entertainment due to his diagnosis. Steven is an advocate for lower drug prices and increased funding for medical research. He is committed to helping other cancer patients and is hopeful that there will someday be a cure for cancer.
