What is exactly Multiple Myeloma? If you are thinking that the word myeloma can indicate something serious and could be a form of cancer, you are correct. According to the American Cancer Society, “Multiple Myeloma is a cancer of plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system. The immune system is made up of several types of cells that work together to fight infections and other diseases. In general, when plasma cells become cancerous and grow out of control, this is called multiple myeloma.”
“ It is extremely important to be an overly assertive patient. If you are not telling your doctor certain things then they cannot read your mind. I quickly learned that as a patient , it was up to me to do my research and not be paralyzed by the fear of the disease.”
I had no clue about this disease until one of my dearest and oldest friends confided in me her diagnosis. Faced with such a daunting diagnosis, she did what I knew she would do. She rose to the occasion and fought like hell and became a self-proclaimed and well-known patient advocate in the Multiple Myeloma community. Yolanda Brunson- Sarrabo is a board member of the MMCA known as the Multiple Myeloma Changemaker Council for Janssen Oncology, Co-host of the Myeloma Team Podcast, and Founder of Mae’s Breath Lung Cancer Foundation. Yolanda was awarded the AACR certificate of recognition from the American Association for Cancer Research. In addition, she is the founder and president of her own fitness brand and company, Chronic Fitness LLC. Yolanda’s company is a fitness boutique that serves clients with various forms of chronic conditions.
In a recent sit down with Yolanda who is currently in remission, we discussed her initial reaction when she was diagnosed and her journey towards being currently in remission. Yolanda is a force to be reckoned with and an inspiration to all as she never skipped a beat in advocating for herself and her future.
Q: Yolanda do you recall where you were when you got the news about your diagnosis?
A: It goes back to my yearly visit to my primary doctor. My doctor had ordered my standard blood work during my annual physical visit. In doing his due diligence, he called me on a weekend saying that my protein level was high. He referred me to a Hematologist which I had never even heard of this type of specialist. I did not act on this referral right away as the gravity of the situation had not yet settled in. He followed up a week later to see if I followed his advice and explained again that my levels were very high and it was serious. He did not diagnose me with Multiple myeloma but said it was an indication there was something wrong. Ironically, I was getting ready to change doctors at this time due to my new location.
I eventually listened and found a specialist. The Hematologists did a bone marrow biopsy then a bone marrow aspiration procedure. The first specialist I saw diagnosed me with Multiple myeloma. I sought a second opinion as the first doctor wanted to start chemotherapy right away. It was daunting and overwhelming, to say the least when I heard the news. At the same time, I was told not to get pregnant while on the chemotherapy treatment. I got in touch with another leading specialist who I asked to review my medical records. I was told that I was asymptomatic with no visual effects of the disease and it was not activated yet in my body. I essentially received a watch and wait for diagnosis. The disease took five years to activate in my body.
Q: How did you go about finding the right doctor and treatment plan for you?
A: The first oncologist I saw, I had no connection with him. He wanted to start treatment right away. I felt that it was extremely important to have a doctor that I not only trust but have a strong connection with and felt comfortable given the journey I was about to embark on. I decided to look for someone else and do my own research. It was very disheartening to see that the statistics showed a five year life span. I also had a very good GYN at the time that helped to weigh in and provide support when I updated her on my diagnosis. She graciously assisted me in a search for a suitable specialist. I also continued to do my due diligence in advocating for myself and sent the doctor I wanted an email. He replied back to me and asked me to send over my records. In addition, I was in contact with the Mayo Clinic and some of their top specialists in the field. Unfortunately, this is also when I discovered the barriers with what insurance would cover versus the out of pocket costs that would be needed to do the recommended testing. It was through my research that I made a connection with a doctor from the Mayo Clinic who was one of top specialists in the country. He gave me a list of about five doctors he felt confident in including my current doctor.
It is extremely important to be an overly assertive patient. If you are not telling your doctor certain things then they cannot read your mind. You also have to find your other doctors to complete your healthcare team. I had to locate specialists including a cardiologist due to medication side effects within my treatment regimen, as well as a nutritionist and social worker. I should have been given the whole story on how to build a healthcare team for my treatment, however, that was not the case.
Q: Based on your experience do you see a disparity with how people are treated based on race within the medical community?
A: Definitely but not in my case because I am a fierce advocate for myself but I have observed disparities. During doctor’s visits over the last twelve years, I see more Black people as well as Indian and Asian in the waiting rooms that look younger. Blacks are twice or three times more likely to get myeloma. It was rare for my age group when I was first diagnosed over ten years ago. The compassion is not always evident among medical professionals when dealing with people of color nor is the information on this disease readily available unless you do your research. I was around 38 and now 12 years later I am noticing younger patients being diagnosed.
This information is not well known in our communities and at times the medical community can take this for granted in terms of providing education within communities of color. It makes it difficult to collect and analyze data since our age and demographic groups are not always a part of clinical trials. If we are not represented in the clinical trials, then we are not getting the full picture of the impact this disease has on Blacks and other minority groups. As a patient, the Multiple Myeloma Research foundation will follow up on how I am doing with treatment. It is good to be a part of these groups such as this so that it can help others. In addition, different medications or treatments may not be available unless you are participating in trials. I have been quite fortunate with God’s plans for me. I am familiar with some that died from this and I never take that lightly.
Q: As a Black woman with a chronic illness, what was the most important lesson that you had to learn?
A: I quickly learned that as a patient , it was up to me to do my research and not be paralyzed by the fear of the disease. In doing my research, I also connected with groups such as the Multiple Myeloma Council Committee for Janssen Oncology. I learned to advocate and question when necessary or when I did not agree with a treatment plan.
Q: What if anything would you do differently along your journey to wellness?
A: I think I follow things pretty well in terms of diet and certain health routines once I received my diagnosis and the shock settled. I learned to schedule my life around being medicated, however, I never let my diagnosis stop me or my dreams. If anything, I would say it motivated me more to make permanent lifestyle and career changes for the better. It empowered and emboldened me even more to take my life to the next level. I would not really change anything about what I have done or continue to do. I was and always have been very methodical in how I go about doing things.
Q: Any advice you can give to individuals with their own chronic issues they are struggling with?
A: I think you have to own it. I get the denial thing but mentally you have to face it and determine how to move forward. You cannot move forward without knowing how to live healthy.
Q: Did you make any changes to your self treatment and care routine?
A: I do not think there has been a change. I would go to the gym and always did my medical appointments on time prior to my diagnosis. Leaving corporate America was the biggest change but that was due to me expanding my business options. It did, however, have a positive impact on my stress level. I engaged in self care activities such as meditation, boxing and massages while I was in the corporate industry.
Since starting Chronic Fitness, I have become even more aware of what is happening with my body. I have been able to gain weight in a healthy way. The stress of being in the corporate world definitely impacted me and I now feel the difference after leaving. My overall healthy lifestyle sparked the idea I had that I could do something with personal training. I had interviewed some personal trainers because I wanted to add that into my treatment and exercise plan.
During my search for a trainer, I came to a come to Jesus moment and saw a light open and realized I could do it. I just started researching ways to obtain my certification. I wanted a trainer that specifically addressed my issues. My target audience is specifically people who want to be healthy but have a specific chronic ailment. I would still work out during lunch breaks at work while I was going through my treatment.
Closing
We thank Yolanda for being candid and sharing her journey to wellness. Yolanda has a Bachelors of Science from Fashion Institute of Technology and holds CPT and BCS certification from NASM as a Personal trainer. She is the founder of Spitfir Productions brand strategy company and a two-time author of the books, Another Face of Multiple Myeloma and The Ins and Outs of The Fashion Industry- From a Fashion Insider. In addition, Yolanda founded Mae’s Breath Foundation which is a lung cancer awareness organization that promotes and provides information to communities in an effort to build healthier relationships between patients and their healthcare teams. She continues to travel the country discussing her journey in the field of health advocacy, racial disparity in healthcare and promoting self-care. Yolanda has proven that with self determination and support, that you can continue to use your voice and advocate for yourself and others. In the face of adversity, Yolanda continues to thrive and not let her illness defeat or define her. Her perseverance shows us that we can overcome even the most challenging and intimidating diagnosis and prevail as not just an ordinary survivor but as an extraordinary human being as God intended when he created us.
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