08/25/2026
āMy first connection to Blood Cancer Unitedās mission starts with my dad. He was diagnosed with chronic lymphocytic leukemia (CLL) in 2002 at the age of 66 and passed away a year later, in 2003, from Richterās transformation (RT).
My next connection is my niece, Courtney. She passed away at age 11 from acute myelomonocytic leukemia (AMML).
Then, in January 2017, my daughter was home from college on break, and we ordered pizza for dinner on Friday the 13th. The next day, my stomach was bothering me, but I figured it was the pizza. The pain didnāt go away, so I saw a doctor and had some tests. Although they initially thought I had diffuse large B-cell lymphoma (DLBCL), I was diagnosed with double-hit lymphoma (DHL). They recommended DA-EPOCH-R instead of R-CHOP, which meant Iād spend one week out of every three in the hospital for six to eight cycles.
While I was in treatment, I read about Blood Cancer Unitedās online patient community and joined. I was able to connect with people going through the exact same chemotherapy regimen, which was amazing and made me feel like I wasnāt alone.
I finished six cycles of treatment, was in remission by July 2017, and rang the bell.
Treatment took its toll; it took a while to regain my energy, stamina, and hair, I visited my daughter in Boston and took a picture of myself taking off my wig behind the MFA. She later spent a semester abroad in Valencia, Spain, so I was able to visit her and see Spain. Iād never been to Europe before, so I got my wish to stick my toes in the Mediterranean.
Later in 2018, I attended the Blood Cancer Conference in New York. In 2019, I joined an in-person Blood Cancer United support group at a local hospital and met survivors of many different blood cancers.
In early 2020, two things happened: COVID-19, and, for me, I got an email from a former colleague saying there was a data analytics opening in Advancement and asking if I was interested. It was my dream to join an organization that had helped me so much, so I joined the amazing Advancement team in May 2020. If that wasnāt enough, Blood Cancer United formed an employee resource group for cancer survivors. I had the good fortune to serve as a co-lead for two years. Through that experience, I got to meet so many wonderful, inspirational employee-survivors.
It took a couple more years, but I finally made it to Italy, which had always been a dream of mine. Iād also never been to the Caribbean, so I traveled to CuraƧao and swam with turtles.
I love the name change to Blood Cancer United and everything it represents. I especially appreciate its inclusiveness. I love our bold goal and hope to contribute many more years of life beyond the nine Iāve already been given.ā
Joan, we are so grateful for youāfor the way you show up and for the generosity with which you share your life and story with us. The next time you go swimming with the turtles in CuraƧao, we'd love an invitation. Your turn: What do you plan to do with more time?
