non-Hodgkin lymphoma (NHL)
My story starts a year before I was officially diagnosed. For months, I had been having GI issues, severe stomach pain, unexplained weight loss, and unexplained anemia. I was seeing the nurse practitioner (NP) at my primary care provider’s (PCP) office who kept prescribing antacids and attributed my symptoms to anxiety. It wasn't until a full year after my symptoms began that I went to a different NP at that office for swelling in my neck that had originally been dismissed as a muscle strain. She didn't like what she saw and immediately sent me for a CT scan. When the CT scan showed a suspicious mass, my PCP got involved and quickly referred me to an ENT doctor who did a fine needle biopsy which was inconclusive. That was followed by a core biopsy, which was, you guessed it, also inconclusive. Finally, I had a surgical biopsy that led to my diagnosis.
I finally was diagnosed with non-Hodgkin lymphoma (NHL) in March 2020, the same week the entire world was shutting down due to COVID-19. I went to surgery alone. I went to treatment alone. Everything was alone. Occasionally my husband could come with me, but this was only allowed for a short period of time due to COVID-19 restrictions. Treatment dragged on. Sometimes it worked well. Other times it didn’t. The pain snuck in, and tears happened. A lot. I wanted to give up. So. Many. Times. But in the end, I knew what I had to do, and with the help of friends, family, and random strangers who became friends, I pushed through and completed a stem cell transplant in January 2021.
During that time, one of the things that helped me and my family feel less alone was The Leukemia & Lymphoma Society (LLS). They stepped in to help us pay medical bills. They offered to help with other bills related to running a home when I wasn’t able to work. They sent me the warmest, fuzziest blanket. And most importantly, they matched me up with a peer mentor who had lived through the exact same thing I was currently experiencing ― someone I could call who had been there, who understood what I was going through, who knew my fears on a deeply personal level. I do not doubt that that peer-to-peer connection saved my sanity during those early days.
After a year of chemotherapy, a stem cell transplant, and two years of immunotherapy, I finished active treatment in May 2023. I am currently in remission and recently participated in the Boston Visionaries of the Year campaign. I'm excited to share my story with others so that they know how to advocate for themselves when they feel that something just isn't right. I was afraid to question the medical professionals, but now I know that doctors are people who make mistakes just like everyone else and that YOU are the one who knows your body best and knows when something is wrong.
My experience was long and difficult, but it also had some high points. During my transplant, I was helped by a small, local charity that works to assist cancer patients who are unable to work with their expenses. In October 2021, I ran the Hartford Half Marathon with 40 friends and oncology nurses I had met during treatment to raise money for that foundation that helped me. In April 2022, I ran the Boston Marathon for another local charity that advocates for early detection and treatment for cancer patients. The Visionaries of the Year program allowed me to share my story with others while raising money for LLS. And most importantly, I had the support of amazing doctors, nurses, friends, and family.