Life Changed Overnight
I was 44 years old when I was diagnosed with Stage III Non-Hodgkins Lymphoma. My life’s passion (outside of raising my three girls) had been about health and wellness and my daily routine included the gym and trying new ways to get our three daughters to incorporate healthy foods into their diet.
Yes, I was “that” mom. Packing carrots and apples for school snacks and baked homemade granola instead of buying it from the store because it has too much sugar in it. I spent so much of my energy on being healthy, that you could probably imagine my shock when I learned that I had a large mass 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 we live) for (thankfully) nonaggressive 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 considered myself relatively young and in good shape, 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 round, 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 make sure we were tracking along the right path. 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. It is a frightening thing to be in front of an expert, who is caught off guard and not sure what to say.
A Turn for the Worse
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 non-aggressive 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 sub-type is even more aggressive and involves the rearrangements of two genes, MYC and BCL-2. In layman’s terms it’s like the accelerator is floored and the brakes are broken on the cancer cells… not good. It is fairly new in terms of diagnoses and research (within the last few years) and therefore hard to find a lot of people out there who have had it, much less survived from it.
From Bad to Worse
On Good Friday of 2017, I found out that I had Double Hit Lymphoma. I started a treatment called EPOCH-R and was hooked up for 5 days straight every 4 weeks. We would do a PET scan after almost every treatment to see the results and unfortunately, while it seemed that the drugs were keeping the cancer steady, it wasn’t killing it and the disease was becoming resistant to the chemotherapy. We talked about other options 1) autologous stem cell transplant (which we collected stem cells for, but never that the opportunity to use them because my tumor load was too high), 2) Allogeneic stem cell transplant, which required a good match for a donor, of which I didn’t have one, 3) Targeted radiation therapy – which was risky because of the location of the bulky tumor, and finally various clinical trials.
Searching for Clinical Trials
For several weeks, I started calling around to various hospitals around the country to inquire about their trials for refractory diffuse large b-cell lymphoma. I had my sister post on social media asking for anyone who knew anyone at one of these hospitals who could help me. There was a person at the Leukemia & Lymphoma society who helped me research for clinical trials that I could potentially be a fit for.
After weeks of calls and praying to get into one, I finally got into a trial at Stanford. Praise GOD! I understood at the time that this was still experimental and that the success rate of this particular treatment for patients with my diagnosis was about 30%. I felt like God had delivered me here and was going to make this work.
After 5 weeks in California, and a PET scan to show us the results… we were all disappointed to learn that the scan showed that everything looked the same.
I was devastated.
Moving to Holistic
With no more conventional options, I went home and literally cried for 3 days. A old friend called me and talk about perfect timing. God truly knows how to work all things for good because my dear friend, Delfina, introduced me to a world of natural therapies, detoxing, and healthy living. As a health coach, this really caught me by surprise because honestly…
I didn’t know what I didn’t know.
It took about two years to heal my body, but scan after scan would show stable disease and slowly over time, those tumors started to disappear. The large one calcified and still remains there, but doesn’t bother me. My oncologists have been awesome, walking along side me during this journey and monitoring my progress in healing. I even had my doctor tell me that he didn’t have any other patients like me… I interpreted that as “off of treatment and healing”. In March of 2022, he told me NO more scans, just annual bloodwork. GOD is good!! And while I had wished that first round of chemotherapy had worked, I am now glad that it didn’t.
My Mission and Purpose
I believe. You often hear people say, “Everything happens for a reason.” I truly believe that.
My mission is to coach, educate, and support people so that they feel empowered to take charge of their health through their cancer journey. I hope that all who find me will be inspired by my story and will pursue a healthier lifestyle passionately whether they are dealing with disease or just trying to prevent it.
I am passionate about helping people that have been diagnosed with cancer. I believe that God healed me for a reason. My testimony of perseverance, faith, prayer, and holistic healing can help so many others that are faced with a scary diagnosis and I want to impact as many people as possible.
Thanks for reading my story and I pray that this will bless you!