Roy Trafalski is a Tennis Pro who runs the only Program in America which teaches life’s lessons to Deaf and hard of hearing students through tennis. He’s dedicated the last 20 years to this most rewarding endeavor and has had the privilege of watching many students grow in many ways beyond tennis.
The March 2020 school closures because of the COVID-19 pandemic may have saved his life. It gave him time to get a massage for an aching back which had previously been diagnosed as a pulled intercostal/abdominal muscle. After the massage, the masseuse commented that there were two spots in particular in which he couldn't apply any pressure without him jumping off the table. Thinking nothing of it, Roy returned home and went to bed that night with expectations of a restful sleep.
Instead, he woke up with intense pain. His whole body was cramping and he knew something was wrong. He headed off to the ER and they began to run some tests. He was diagnosed with multiple myeloma, and they admitted him right away. There were multiple lesions throughout his body along with a broken T-7 vertebrae.
Roy was shocked. Everything had happened so fast. If it hadn't been for the free time "given" to him by the school closures, would he have been diagnosed as quickly? Or would this have taken much more time to figure out?
Kyphoplasty surgery alleviated his back pain within 36 hours. He gained back some of the weight that he had lost from the stress and back pain and began RVD (REVLIMID, Velcade, dexamethasone) treatment with his local oncologist. He later dropped the dex and added daratumumab to his regimen.
This regimen has worked well to treat his disease, and Roy has harvested his stem cells, although he hopes not to have to use them.
He has regular visits with his oncologist to monitor his disease and tracks his labs, especially his m-spike (monoclonal protein).
This regimen has worked well to treat his disease and get it under control. Roy has also harvested his stem cells, although he hopes not to have to use them. That isn't to say that his diagnosis has been a breeze. In fact, he's experienced a multitude of side effects:
- ONJ (osteonecrosis of the jaw)
- Peripheral neuropathy
- Cataract surgery
- Full body rash
He continues regular visits with his oncologist to monitor his disease and tracks his labs, especially his m-spike (monoclonal protein). He is so grateful for the patient support group meetings and support from his healthcare team that has helped him to navigate his multiple myeloma journey.
When asked what advice he would share with his myeloma community, he shared a favorite quote but the famous Helen Keller:
"Optimism is the faith that leads to achievement, nothing can be done without hope and confidence."
Optimism certainly runs in Roy's blood, and he frequently reflects on the silver lining of the COVID-19 quarantine that allowed him more time for himself- allowing the diagnosis to make itself clear.
If you want to track your myeloma labs, you can do so through our free research portal. Sign up here: HealthTree Cure Hub
Have side effects that need solutions? Check out our crowd-sourced solutions here: Patient Solutions
Want to read other myeloma patient stories? Explore many journeys and perspectives here: Myeloma Patient Stories
Looking to record your own myeloma story? You can do so here: My Journal
about the author
Audrey joined the Myeloma Crowd as the Community Manager in 2020 after previously working in the nonprofit field for 4 years as a director of Fundraising and Development. She graduated from BYU with a major in Spanish and Nonprofit Management. Audrey is passionate about serving others, loves learning, and enjoys a nice mug of hot chocolate no matter the weather.