Cecelia Butler Johnson: Two Decade Survivor of Myeloma and Breast Cancer

For Cecelia Butler Johnson and her daughter Makeda Tene, the journey through cancer has been defined by resilience, faith, and a commitment to sharing their story. Cecelia, a 22-year survivor of multiple myeloma and breast cancer, has defied the odds, and her story is not only one of survival but also one of transformation—for both herself and her family.

A New Chapter: From Diagnosis to Advocacy

When Cecelia was diagnosed with multiple myeloma over two decades ago, she recalls the shock of being told she had only 1-2 years to live. Cecelia, in disbelief, remembers deciding at that moment: “Man cannot tell me how long I will be here.”

Her journey continued with many doctors and specialists, including Dr. Anand Jillella at Augusta University Medical Center, whose expertise gave Cecelia hope and effective treatment. As his longest-living patient, Cecelia fondly remembers surprising him years later during a follow-up visit. “I know what you’re thinking—you didn’t expect to see me,” she joked, lightening the moment with her characteristic humor.

The road wasn’t without fear. “I knew what cancer and chemotherapy meant from my years working in a hospital,” Cecelia says. Yet, she consciously chose not to dwell on the grim possibilities. Instead, she stayed active—working, participating in her church, and staying deeply involved in her family’s lives.

A Second Battle: Facing Breast Cancer

Years into her fight with myeloma, Cecelia faced another challenge. One night, she heard an inner voice urging her to check her breast. “Cecelia, get out of fear and check your breast,” it said. She discovered a large lump and immediately sought medical advice. Her doctor confirmed it was malignant.

While the diagnosis brought back familiar fears, Cecelia approached it with practicality and faith. She underwent chemotherapy to shrink the tumor before a mastectomy. “The chemo didn’t shrink the tumor as hoped,” she recalls, “but I didn’t boo-hoo and cry all over the place. I accepted it.” She even delayed her surgery to attend Makeda’s wedding in Nigeria. “I wouldn’t have missed that for anything,” she recounts with pride.

Cecelia opted against reconstruction after her mastectomy, a decision she made confidently. “The doctors eventually stopped asking. They could see I was comfortable in my own skin.”

The Caregiver’s Evolution: Makeda’s Role

Makeda’s role as a caregiver has transformed over the years. As a young adult, she relied on her grandmother to buffer her from the harsh realities of her mother’s illness. But as she matured, she began accompanying Cecelia to treatments and emergency visits. “Seeing the ER trips and navigating infections made it real for me,” Makeda shares.

The turning point came during a conversation at church. Makeda, who rarely spoke about her mother’s diagnosis, discovered that another church member was also living with multiple myeloma.

“That moment showed me the power of sharing,” Makeda says. “I wanted others to know that just because you have a diagnosis, doesn’t mean you have to give into the timeline doctors give you.”

Makeda has since taken the lead in amplifying her mother’s voice. Using her background in publishing, she helped Cecelia write and promote Beyond the Diagnosis: Surviving and Thriving with Multiple Myeloma and Breast Cancer.

“This is what my caregiver role has evolved into,” she explains. “My mom helped our family become known in our community when we were younger. Now, I get to do that for her on a larger scale.”

Life Lessons from Cecelia’s Journey

Cecelia’s 22-year journey has been marked by her refusal to let cancer define her life. She credits her longevity to a combination of good healthcare, compliance with treatment, faith, humor, and staying active. “I try not to be around negative people,” she says. “I wake up each morning with a new light.”

Despite her optimism, Cecelia acknowledges the challenges. Her current medication has caused a loss of taste, making meals a difficult experience. She’s also realistic about the future: “There might come a day when I say, ‘I’m done.’ But that day isn’t here yet.”

A Family’s Legacy of Hope

For Cecelia and Makeda, sharing their story is more than therapeutic—it’s a mission. They hope to inspire others to live beyond their diagnoses, and to find joy and purpose even amid uncertainty.

“Even when life gets hard, you have to keep going,” Cecelia says. “If you want to live, sometimes you just have to do things.”

Their journey continues, not just as survivors and caregivers but as advocates for those navigating their own paths through cancer. With their voices, they uplift a community, proving that life’s challenges can be met with grace, determination, and hope.

To read Cecelia's book, explore here: Beyond the Diagnosis: Surviving and Thriving with Multiple Myeloma and Breast Cancer

_{HealthTree Foundation has no monetary connection with the purchase of this book.} 

Continue exploring other patient stories like Cecelia’s here: Myeloma Patient and Caregiver Experiences