My Name is Beth, I’m from Missouri and I was diagnosed with stage 4 FL in 2019.
About Me
I’m a marketing and media specialist, who loves cooking, plants, puzzles, a good movie and documentaries. I’m a mum to my two adult children, Brett (27) and Molly (22), who, along with my wonderful father, Pat, have been such an important part of my life and journey.
When I Heard the Words “Follicular Lymphoma”
On October 1, 2019, at 47 years old, I went in for my annual physical after having bloodwork drawn the week before. Before that appointment, I felt great. I had lost about 20 pounds and had plenty of energy, although I noticed I was sleeping a lot. My daughter also told me I was “snoring like a freight train.” Not long after that, I realized the glands in my neck were swollen.
When my doctor walked into the room, she said, “Well, we have a lot to talk about.” Many of my blood test results were marked in red, meaning they were outside the normal range. Most notably, my white blood cell count was extremely high. That appointment began my journey toward finding out I had follicular lymphoma.
The initial diagnosis was chronic lymphocytic leukemia. However, after a lymph node biopsy, a bone marrow biopsy and a lot more bloodwork, my oncologist diagnosed me with follicular lymphoma. From there, everything seemed to happen quickly. I had more bloodwork, several consultations to talk about treatment options and surgery to place a port into my vein (so I can easily be given the medication). By the end of the year, we had agreed a plan to begin R-CHOP chemotherapy in January 2020.
Unfortunately, I was one of the unlucky few who had a reaction to Rituximab, so it had to be given very slowly and my first treatment lasted two days. It was a frightening experience, but I cannot say enough about the care and attentiveness of the nurses and doctors at our cancer center. About a week after my first treatment, my hair began to fall out. That was when cancer became very real to me because it was suddenly something I could physically see.
After a few more treatments, each three weeks apart, my doctor scheduled a PET scan to see how I was responding. The results were incredible. My lymph nodes were shrinking, and physically, I was responding exceptionally well. Mentally, however, the experience was taking a serious toll.
I feel it is important to talk honestly about the mental side of chemotherapy because it played such a major role in my experience. A few treatments into chemo, I became extremely depressed. Knowing that follicular lymphoma was a chronic illness weighed heavily on me, especially as a single mother of two children. At the same time, the pandemic had reached our part of the country, and we were under lockdown. The high-dose prednisone used during chemotherapy made me extremely manic, and the treatment was also pushing me into early menopause. By late April, I spent several days receiving psychiatric care. I was terrified. I have always been a social person, and going through chemotherapy while being told I had to completely isolate from the people I loved was heartbreaking. The pandemic lock down happened at the exact time I needed them most. It truly was the perfect storm.
After consultations and changes to my medications, I completed my final treatment and rang that bell loud and clear. Following another PET scan and bone marrow biopsy, I was declared NED, meaning there was no evidence of disease, on July 15, 2020.
I continued receiving maintenance Rituximab treatments through May 2022. By God’s grace, I have continued to remain NED.
My best advice to everyone is simple: Do not skip your annual physical. It truly could save your life. To other FL patients my advice is be honest with your doctors, especially if you are struggling. Mental health is so important during your cancer journey and talking about it helps
The research the FLF are doing is so important. Hope for a cure motivates me, as it does us all.
