Please listen to a special message from Sharon to her fellow WMers on her YouTube channel, https://youtu.be/qw2GkpUJtRY(link is external)
For most of my life, I have practiced a healthy lifestyle. While in my 40’s, I began to exercise. Eventually, I built up the knowledge and capability to become a certified personal trainer. I love staying fit, and my personal training enabled me to supplement my income, while at the same time helping others realize the benefits of physical activity and a healthy lifestyle.
I was 57 years old when my husband’s work moved us from New Jersey to the west coast of Florida. Our new home was in a 55-and-older community. I was fortunate to make many new friends and continued working as a personal trainer. However, moving to a new area made it necessary to find all new doctors. While visiting my new internist, he noted that I had a low white blood cell count (WBC). Originally, I didn’t think much of it. We agreed to keep it monitored. When I went back in the fall of 2018, my WBC was 2.8, and the physician’s assistant at the practice made an appointment for me with a hematologist/oncologist in January of 2019. She indicated that WBC under 3 is of concern.
Over a period of a year and half before my diagnosis, I did not realize that the symptoms I was experiencing were related to Waldenstrom’s macroglobulinemia (WM). I started having occasional pain and bloating in my abdomen. I had been having these issues off-and-on for years. Also, I began having night sweats, but I attributed these to being post-menopausal and simply a part of aging. I was fatigued, lost weight, and was having dizzy spells. My Raynaud’s syndrome was getting worse in my fingers and toes. However, I could find excuses for all of those things happening to me, so I wasn’t really concerned.
When I met with the oncologist in January 2019, he ordered a battery of blood work and cytometry. The results were low WBC, anemia and low monoclonal B-cell lymphocytosis (MBL). When I was informed of these findings I almost fell off my chair. According to the oncologist, rarely does MBL, when low, turn into a cancer such as Chronic Lymphocytic Leukemia (CLL). MBL has symptoms such as night sweats and stomach issues. The oncologist said they were not related. He ordered a CT scan which showed that my spleen was slightly enlarged. By March, the oncologist told me to put this all out my head and come back in July.
Between March and June, all my symptoms started to escalate. More than ever, I was in tune with my body and the changes I was feeling. My stomach started bloating daily. I began to lose more weight, my arms got very thin, and the fatigue was getting worse. Although I had trouble running and biking, I pushed through it. I didn’t think anything was wrong!
I addressed my stomach issues with a new internist. She had me see a gastroenterologist who said it was probably irritable bowel syndrome (IBS). She scheduled me for upper and lower GI examinations. Because I felt hardness on the left side of my abdomen, I never had the procedures. In June, my internist ordered a lot of bloodwork and another CT scan. There were many issues with my bloodwork. The CT scan showed that my spleen was more than double in size. I then saw a surgeon who said he could not take the spleen out because it was so big, and I am of small stature. He went on to say, “you need chemotherapy.” I was shocked and kept asking myself, “what did he say?” When I heard those words, I became overcome with emotion, and began to understand the need for someone to accompany me to important physicians’ appointments.
The surgeon referred me to my current and absolutely wonderful oncologist. He thought I had CLL, but the cytometry ruled it out. He said it was more than likely WM. The bone marrow biopsy diagnosis said lymphoplasmacytic lymphoma or WM. Also, he said I was very symptomatic for someone with my IgM level at 571. He went on to tell me that I was in an even rarer category, as I didn’t have the MYD88 or CXCR4 mutations. Approximately 5% of WM patients don’t have these genetic mutations. Because he was concerned about my spleen rupturing, he told me that I had to stop running and cycling. I was permitted to lift only light weights. Again, “what did he just say?” I have cancer, it’s rare and, yes, it is chronic and incurable. I was scared.
When I realized what was happening and the nature of my diagnosis, my head was spinning. I went through a lot of ups and downs physically and emotionally. It felt as though the world was swirling around me. It appeared as though life was going on for others, but my world had come to a screeching halt. Friends and family would try to find words of support, but nothing seemed to make sense. Eight years earlier I had had a scare with cancer. After years of abnormal mammograms, I was diagnosed with lobular carcinoma in situ (LCIS), increasing my risk of developing invasive breast cancer. I opted for a double mastectomy. Now the word cancer had resurfaced, only this time it was real and already present.
Immediately, my oncologist started me on ibrutinib once per day, supported by rituximab infusions once a week lasting for a one month period. After the chronic “rare cancer” words sank in, I asked my doctor, “When will you let me run, ride my bike and lift weights again?” It seemed an unusual thing on which to focus, but it was an outlook that was much more positive than my current situation. I needed something to look forward to. He gave me a target of 2 – 3 months. My spleen needed to shrink halfway. By the third month, however, I failed on ibrutinib because of side effects that included a racing heart and abnormal blood pressure. My reaction to ibrutinib was deeply disappointing to me. My ability to maintain hope was getting tougher and tougher. Family and friends provided enormous physical and emotional support, for which I will be forever grateful. However, exercise was something that was a huge part of my lifestyle, which I had nurtured and developed for nearly twenty years. I was hanging on to the hope that it would be something that I could soon resume.
Good news finally came. Within two months of my first rituximab treatment, my doctor saw enough progress to be able to release me to exercise with no restrictions. It was an exciting day when I was able to begin getting back to my exercise routine. I began to feel hope that my life was returning to some degree of normalcy. Needless to say, I wasted no time getting back to exercise. While slow at first, I found that bringing exercise back into my daily routine gave me focus. It became a way for me to demonstrate that I would not give in to WM. At Thanksgiving, I ran in a 5k and achieved my fastest time ever. I also participated in a 35-mile bike tour.
With the blessing of my local oncologist, I saw Dr. Castillo at Dana-Farber Cancer Institute in January 2020. His main concern was my spleen and how rapidly it enlarged in a four-month period. He recommended quarterly rituximab maintenance, to continue for two years. I finished my third round in July 2020. I’m happy to say that I have been feeling pretty good. My IgM was slow to drop since I started this treatment, but it is now at 298. From time-to-time I am fatigued, but most other symptoms have subsided. I was feeling well enough to plan to get back to the gym, reconnect with my previous clients, and resume my personal training business.
As if WM was not making things hard enough, the world threw us all another curveball in 2020 with the COVID-19 pandemic. Because of my compromised immune system, I knew I needed to be careful going to the gym. I needed to think differently about my personal training business. How could I help people with fitness training without going to the gym to see them in person? With the help of a long-time friend whose hobby is photography, we worked together to build a website. We began making free exercise workout videos that I can share via YouTube. It has helped me reach my prior clients as well as an even broader audience, and has enabled me to focus on a future outlook that was brighter than my then-current situation.
I continue to make free YouTube videos as well as to build my online personal training business. This focus has coincided with my one-year anniversary living with WM and celebrating my twelfth year as a personal trainer. Since the end of March, I have made over forty videos. Having this project has not only kept my mind busy, but it has pushed me to a higher level of physical ability and fitness than before my diagnosis.
I am so honored the IWMF wanted me to share my journey. Fitness and nutrition have been an integral part of who I am. To be diagnosed with cancer was so contrary to what my life was beforehand when I was living and breathing a healthy lifestyle. As I move forward into my 60’s, I want to share my passion for fitness with the WM community. It is my hope that my free workout videos and website will help others as they navigate this strange world of WM.
The help that I have been given by this wonderful foundation, as well as my support group, have helped me to cope. It makes me hopeful that I will be able to live a healthy life for a long time even though I have cancer.
Please feel free to reach out to me through my website or YouTube channel. I encourage you to try one of my workout videos! Since my workouts are always done with modifications, they can be done by any age group or fitness level. As with starting any exercise program, be sure to consult your doctor beforehand. You can learn a little more about me by viewing my YouTube introductory video and on my website. See links below.
www.fitnesswithsharon.com/(link is external)
Lakewood Ranch, FL