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Kay's Cancer Journey
4/16/2017 Latest post:
I am 45 years old, extremely active (4-5 workouts a week) and my life's passion (outside of raising my three girls) has been about health and wellness. I became a health and cleanse coach with a top-notch wellness company 4 years ago. I am the weird mom that provides carrots and apples at kids get-togethers to provide a healthy option and bakes homemade granola instead of buying it from the store because it has too much sugar in it. So it was a shock to learn that I had a large mass the size of an eggplant in my abdomen as well as others in my chest, and under my right arm on Halloween 2016. My normal life hasn't been the same since.
I started chemotherapy/immunotherapy treatment within 2 weeks in Tucson (where I live) for Non-Hodgkins Follicular Lymphoma. I was told if you were to have cancer, this was the one to have because it is indolent (slow-growing) and very treatable. I am young (relatively) and fit, so I was ready to fight the good fight. My treatment plan was 6 months of Rituximab/Bendamustine, given over 2 days every 4 weeks for 6 cycles. I started in November and went through 5 cycles. After the 3rd, my doctor ordered a CT Scan with Contrast which showed that the tumor under my arm was essentially gone as well as the ones in my chest, but the large mass was only shrunk by about 25% and there was another that showed very little change. At that point, we continued another 2 cycles, and at my appointments I kept questioning what we were expecting.
At my meeting with my oncologist the day of my 5th round, my persistent questioning finally convinced him to order a PET scan the week before my 6th and final round of treatment in order to see where we were and check progress to make sure we were tracking along. I was crushed when the results came back that in my abdomen the tumors were unchanged in size or slightly larger and more hypermetabolic (active/aggressive) than they were in the original PET scan I had in November. It was most disconcerting that my doctor was almost panicked and had a "deer in the headlights" look. He did not expect this and was obviously inexperienced with this scenario.
I had fortunately planned ahead to meet with my doctor at the Mayo Clinic in Phoenix (whom I had originally consulted in November for a second opinion) just two days later. When we met with her, she suspected that my nonaggressive lymphoma had transformed into an aggressive Diffuse Large B Cell lymphoma. DLBCL is very treatable with a standard protocol called R-CHOP. She had explained to us that about 10% of cases of follicular lymphoma transform in our original meeting with her, but at the time she agreed to the treatment plan that was laid out for me and so we had decided to stay in Tucson for treatment.
She ordered a biopsy for me to be done at Mayo the following week and mentioned that in some cases of transformed lymphoma , you get a rare gene mutation which they call Double Hit Lymphoma. This subtype is even more aggressive and fairly new in terms of diagnoses and research (within the last few years). It was very scary to hear that this could be a possibility because in many cases the cancer is resistant to therapy.
On Good Friday I found out that I have Double Hit Lymphoma and so my cancer journey just got a lot longer and my faith in God just got a lot stronger.