mantle cell lymphoma (MCL)
I was diagnosed with stage 4 mantle cell lymphoma (MCL) in December 2020, but at the time, it was considered to be "indolent." That quickly changed in late February 2021 when I experienced intussusception, a painful telescoping of the bowel into itself requiring hospitalization. A colonoscopy revealed a 7 cm. mass of the cecum, and the biopsy showed that it was MCL. I was discharged from the hospital with the agreement that I would come back a week later and start chemo/immunotherapy. Since Rituximab® can cause certain issues the first time the body sees it, I was glad to be in the hospital where they could quickly react to the plummeting blood pressure. I soon learned that this was the start of six months of induction therapy leading up to another big chemo week and stem cell transplant (three weeks in the hospital). During this time, someone from The Leukemia & Lymphoma Society (LLS) dropped by with information and to "cheer me on," which was appreciated. I'll now start three years of maintenance immunotherapy (infusions every eight weeks) as soon as the blood counts are closer to normal. At this time, I'm 85 days post-transplant and doing fairly well. I miss having hair but really miss my energetic lifestyle. Adjusting to a more sedentary life has been the most difficult part of this journey.
All of the testing and hospitalizations prior to turning 65 in May 2021 were expensive, so I applied for the Co-Pay Assistance Program through LLS. I'm happy to say that it made a world of difference to us since we were left with huge bills from the 2020 "deep-dive" testing and the 2021 hospitalizations. At the same time, my consulting work was scaled back due to both COVID-19 and my monthly treatments, so the Co-Pay Assistance Program helped make up for that loss. I'm grateful to LLS for their workshops, outreach, and the myriad of programs that help patients and caregivers cope during this difficult time.