My first connection to Blood Cancer United’s 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 of a Richter’s transformation (RT) in 2003.
My next connection is my niece Courtney. She passed away at age 11 of acute myelomonocytic leukemia (AMML).
Then, in January 2017, my daughter was on college break, and we ordered pizza for dinner on Friday the 13th. The next day, my stomach bothered me, but I figured it was the pizza. The pain didn’t go away, so I saw a doctor, had tests, and although initially thinking I had diffuse large B-cell lymphoma (DLBCL), I turned out to have double-hit lymphoma (DHL), and they recommended DA-EPOCH-R instead of R-CHOP, which meant I’d spend one week out of every three in the hospital for six to eight cycles.
While in treatment, I read something about Blood Cancer United's (formerly The Leukemia & Lymphoma Society) online patient community, and I joined. I was able to connect with people going through the exact same chemo as me, which was amazing and made me feel like I wasn’t alone.
I finished six cycles of treatment, looked to be in remission in July 2017, and I rang the bell.
Even though treatment took its toll, and it took a while to regain my energy, stamina, and hair, I visited my daughter in Boston and got a picture taking off my wig behind the MFA. She then did a semester abroad in Valencia, Spain, so I was eventually able to visit her and see Spain. I’d never been to Europe, so I got my wish to stick my toes in the Mediterranean.
Later in 2018, I went to the Blood Cancer Conference in NYC. In 2019 I joined an in- person Blood Cancer United support group at a local hospital and met survivors of a number of different blood cancers.
In early 2020, two things happened: COVID-19, but also for me, I got an email from a former colleague saying there was a data analytics opening in Advancement, and they wondered if I was interested. It was my dream to join an organization that had helped me so much. So I joined their amazing Advancement team in May 2020.
If that wasn’t enough, Blood Cancer United formed an employee resource group for cancer survivors, and I had the good fortune to serve as a co-lead for two years. I got to meet so many wonderful, inspirational employee-survivors through that experience.
It took a couple more years, but I finally made it to Italy, which was a dream, and I had also never been to the Caribbean, so I went to Curacao and swam with turtles.
I have so many blessings in my life, but two of them are certainly my two dogs – 11-year-old Sundae, a Shih Tzu/Bichon Frise mix, and Tootsie, a two-year-old Shih Tzu.
I love the name change to Blood Cancer United and the inclusiveness of it. I really like our bold goal and hope to contribute many more years of life beyond the nine I’ve already gotten! Thank you!
Joan
double-hit lymphoma (DHL)
