What People with Multiple Myeloma Want You to Know

What People with Multiple Myeloma Want You to Know

Living with Multiple Myeloma: Empowering Stories of Courage and Hope


Multiple myeloma, a rare type of blood cancer affecting less than 1% of Americans, can indeed take a serious toll on your life. However, the good news is that better treatments and increased awareness of the disease bring power and hope. A diagnosis no longer means putting your life on hold. In this article, we will explore some lesser-known facts about multiple myeloma, shedding light on its impact and the courageous individuals who live with it.

It’s Not Bone Cancer, But It Can Cause Bone Problems

Contrary to popular belief, multiple myeloma is not bone cancer itself. Rather, it affects plasma cells, which are infection-fighting white blood cells crucial for your body’s immune system. This type of cancer originates in the bone marrow, the soft and spongy tissue inside bones responsible for blood cell production. Consequently, multiple myeloma can lead to various issues such as back and bone pain, fatigue, and an increased risk of infections. Weakened bones are also a common occurrence, demanding heightened caution in everyday activities.

Samantha Hines, a 55-year-old security professional from Dacula, GA, experienced the consequences of weakened bones firsthand. In 2018, a routine visit to the chiropractor resulted in 18 fractures in her ribs. Hines underwent surgery to fix a crushed vertebra, a tiny bone in her spine. She explains that even simple activities like sneezing or coughing could lead to such injuries. These anecdotes highlight the importance of being mindful and taking precautions for those living with multiple myeloma.

Samantha Hines

It Doesn’t Happen Only in Older People

While multiple myeloma is commonly associated with older individuals, with most cases diagnosed in people aged 65 or older, it can affect people across all age groups. Jameca Barrett, now 44 and living in Fairburn, GA, was diagnosed with multiple myeloma at the young age of 26. Barrett reflects on how this life-altering diagnosis disrupted her peers’ trajectory as they built their careers. She explains how her age became a deterrent to an early diagnosis, with imaging tests initially discrediting the possibility due to its rarity in younger individuals. Less than 1% of cases occur in people under 35, making early detection challenging.

Jameca Barrett

There’s a Racial Gap

Multiple myeloma is the most common type of blood cancer among African Americans, with this population being twice as likely to develop it compared to white individuals. Approximately 20% of people diagnosed with the disease are Black. Disturbingly, projections suggest that by 2034, nearly a quarter of new diagnoses will be in African Americans. The reasons for this racial disparity are still being investigated. Jameca Barrett, who actively advocates within the African American community, sees several obstacles hindering timely diagnosis and treatment. High healthcare costs and a lack of information contribute to the problem. Barrett also emphasizes the importance of seeking a second opinion, as many individuals place utmost trust in their initial healthcare provider’s expertise, potentially overlooking potential issues.

Speaking about her personal journey, Barrett underlines the psychological impact that accompanies the physical toll of multiple myeloma. She describes how the cycle of pain and stress intertwines, creating a challenging reality for those living with the disease. Access to mental health care becomes crucial in order to navigate these challenging circumstances.

Multiple Myeloma Can Take a Toll on Mental Health

Barrett, together with Samantha Hines and other members of the Atlanta-area multiple myeloma support group, understands the mental health impact of living with the disease. Depression and anxiety commonly accompany the physical symptoms, particularly in those who have lost their independence or experienced unsuccessful treatments. Barrett emphasizes the cyclical nature of pain and stress, where the two feed off each other, creating an endless loop of suffering. The identity and abilities of individuals with multiple myeloma may be altered, leading to a need for greater reliance on others. Seeking professional help for mental health concerns becomes an essential part of the journey.

Barrett further advocates for self-reflection during periods of remission. While there is no cure for multiple myeloma, achieving remission means a disappearance of symptoms and no observable signs of cancer in plasma cells. After at least a year of remission, some individuals benefit from redefining themselves and embracing newfound excitement for future accomplishments. It is an opportunity to build a positive outlook and shape a fulfilling life.

You Don’t Have to Put Your Dreams on Hold

Even amidst the challenges, stories of resilience and determination fill the lives of those living with multiple myeloma. Jameca Barrett, now in remission for 15 years after chemotherapy and a stem cell transplant, has faced a few health setbacks but considers herself blessed. Samantha Hines, who is currently undergoing her third chemotherapy drug, aims to debunk the misconception that multiple myeloma is a death sentence. When first diagnosed with stage III disease in 2018, Hines came across an internet search result claiming her life expectancy to be merely two years. This revelation brought her to tears, as she felt there was so much more she wanted to experience and achieve.

Determined to live life to the fullest, Hines sold her motorcycle due to the risks it posed to her bones but continued to enjoy the thrill of riding with a more stable three-wheeler. She revamped her diet, focusing on healthier choices such as green vegetables while avoiding sugar and meat. Additionally, Hines fulfilled one of her dreams by starting a line of all-natural vinaigrette salad dressings. Her determination is best exemplified by her message written on the soles of her shoes, reminding her to walk myeloma out of her life each day. She refuses to let cancer define her.

Samantha Hines

Living with multiple myeloma presents numerous challenges, but these stories of resilience, courage, and hope remind us that there is life beyond the diagnosis. Through increased awareness, support systems, and a positive mindset, individuals with multiple myeloma can thrive and pursue their dreams. Let their experiences inspire us to embrace our own strength, resilience, and determination in the face of adversity.