“I wish we would talk about it more because you wouldn’t feel so alone going through it,” shares Jawanna, pictured here. Photographer: Casey Templeton
Multiple myeloma is the second most common blood cancer in the U.S., and Black and African American people develop MM at much greater rates and at younger ages than people of other races.1,2 Currently, there’s no cure. But with treatment, there’s hope. As Jawanna shares in this story of determination and resilience, it’s possible to manage MM and thrive.
It’s very important for me to share my story because I want to be an example that you can fight this cancer, you can live a fulfilled life, and you have to be able to push on and have faith. – Jawanna, diagnosed with Multiple Myeloma
“I was in my favorite place ― Grenada,” remembers Jawanna, who was taking a one-year sabbatical at the time. The island country in the Caribbean is known for its lush rainforests, stunning waterfalls, and sparkling beaches. Traveling is one of Jawanna’s passions, an interest she developed while working in the Coast Guard.
“Over time, I started to notice that my health had declined,” she says. “I had back pain. I was severely anemic. I didn’t have an appetite. I was fatigued. I would sleep 10 hours and feel like I didn’t sleep at all. I had lost weight. I didn’t know what was going on.”
Looking for answers, she went to a local clinic on the island, where x-rays were taken. “They said I had compression fractures,” says Jawanna.
Those findings were puzzling.
“I hadn’t broken a bone in my body or had any traumatic injuries or surgeries,” she notes. “I could only get so much help there. I needed to come back home. When I came home, people that knew me knew I wasn’t myself. I would go to the hospital once, twice a week, sometimes the ER, just to figure out what was wrong with me. They would say, ‘Oh, you’re fine, you’re young. Just eat better.’ It was like a revolving door, just trying to figure out what was happening with me.”
Persistence, Then ― Finally ― Answers
Jawanna didn’t give up searching for an explanation for her symptoms. Determined to find a doctor who would listen to her, she pushed on.
“When it comes to doctors, I can only speak for the African American community, sometimes in my community we get so stuck on a title and just trust what they say,” she says. “That’s why I kept pushing. I feel like we don’t question medical professionals enough. There’s a disconnect there where, a lot of times, we feel like their word is final. We’re telling them how we feel and nothing is happening, instead of getting second, third opinions, and asking questions.”
Jawanna’s persistence paid off when, finally, she received a referral to see a neurologist. He ran some tests but refrained from making a diagnosis.
“He didn’t want to say anything to me,” she says. “He said he had a friend who was an oncologist. You hear about the big cancers — breast cancer, prostate cancer. I would do the Susan G. Komen walk. I know about those big cancers. I never knew what oncology was. I never had much interaction with cancer in my personal life.”
The neurologist called oncologist Dr. James Xu, who wanted to see Jawanna right away. “[Dr. Xu] looked at me and was like, ‘Something is wrong, we are going to figure this out,’” she remembers.
Jawanna spent several days at the hospital, where she underwent tests and blood transfusions to address her severe anemia. When she returned to Dr. Xu’s office, he had a diagnosis. It was multiple myeloma.
What Is Multiple Myeloma?
Multiple myeloma (also called myeloma) is a blood cancer that starts in the plasma cells of bone marrow. As myeloma cells crowd out healthy cells, it can lead to symptoms like anemia, bone problems, and kidney damage.
Once she had the diagnosis, Jawanna says, “I felt a little sense of relief. I just wanted an answer. I feel like, when people go through this stuff, all they want is an answer instead of being pushed aside. I felt relief that I found a doctor that took my symptoms seriously and went the extra mile to order all the tests. He knew that something weird was going on and needed to figure this out.”
Navigating Treatment Challenges & Finding Connection
“Once I met with Dr. Xu and he diagnosed me, I hit the ground running,” says Jawanna. “I met a doctor who cared about me and cared about my symptoms, and I went on treatment right away.”
Jawanna started chemotherapy, making two to three trips a week to receive treatment. Meanwhile, the COVID-19 pandemic was starting to unfold across the world. “At the beginning, my mom was able to come with me and then, as it got crazier, I had to go by myself. And that’s when it got crazy financially,” recalls Jawanna.
To maintain her treatment plan, Jawanna had to leave her job. “I had to move back with my mother at that time, and I had a walker,” she says. “I had been on my own for so long, I didn’t want to put this burden on my mother, this financial stuff.”
So, Jawanna started doing research, googling cancer organizations that could help. That’s how she discovered resources like the Leukemia & Lymphoma Society and the Cancer Support Community. CSC helped connect Jawanna with funds to finance her hotel stay while she prepared for a stem cell transplant at the University of Maryland Hospital in 2021. The procedure required her to stay near the hospital during the cell collection process.
In the U.S., about 157,000 people are living with or in remission from myeloma.3 Currently, it’s managed like a chronic illness, and there are different treatments to help manage it.
“During that time, I was doing my own research on multiple myeloma,” says Jawanna. “Throughout that process I met a lot of people in my demographic, young Black people who had my issue. I started to share my story on my social media, and I would get DMs from people — some who I knew, some who I didn’t ― in my demographic, same lifestyle as me and no prior history, no childhood illness, and some prior military like myself, who were going through the same thing.”
As Jawanna navigated her diagnosis and treatment, she discovered strategies and resources that were helpful to her.
“I wish we would talk about it more because you wouldn’t feel so alone going through it,” she says. “I wanted to try to be a face to the illness and just let people know that you are not alone and there are resources out there. Every time I found a resource that would help, I had this document I would share with everybody. My gift is connecting the dots, so I really homed in on that. I wasn’t working at that time, and that was my passion project.”
Developing a Support Network
Among the people who reached out to her via DM, Jawanna remembers one young woman who wanted to know, “Jawanna, how do you do it? How do you keep going?”
“She was younger than me, single, no children, an African American female, and had no idea where this cancer came from,” Jawanna recalls. “She could not get out of her head.”
Jawanna worried that the young woman lacked a strong support system, both personal and medical. “I feel like that’s the number-one thing you need when you are going through something like this,” she says. “Unfortunately, she passed away.”
“I wish we would talk about it more because you wouldn’t feel so alone going through it.” – Jawanna
Jawanna credits her own medical team ― including her doctor, a mental health therapist, and her transplant team and a transplant coordinator at the University of Maryland Hospital ― for helping her navigate her diagnosis and treatments.
“She didn’t have that,” says Jawanna, who did what she could to offer support to the young woman through their messages. “I could only do so much from the DMs. I think that the mental part is big because it keeps you from taking the necessary steps to go forward.”
Self-advocacy, determination, and help from loved ones played critical supporting roles in Jawanna’s cancer experience.
“I took charge of my health and had a great support system with my family, friends, doctor, and transplant team,” she says. “All of those factors helped me get to the point where I am today. Healthwise, my numbers are great. After my transplant, I hit the ground running. I’m not going to let this cancer take over my life. I was so determined to bounce back. I was back at work two months after my transplant.”
Everybody’s different, she adds. “The way my body reacted to treatment may not be the way others do. But you have to have a good support system and be ready to tackle this mentally. Without that, you are going to have a harder fight. Even when I didn’t want to fight for myself, I had my mother, my uncle, my friends. I had people to ask me, ‘What do you need?’”
Today Jawanna’s treatment plan includes infusions and regular follow-up appointments with her doctor. “I feel amazing and really am blessed, and I just want to continue to be a voice for people,” she says.
5 Takeaway Tips
If you or someone you love is navigating multiple myeloma, here are key tips Jawanna wants you to know:
- Educate yourself: Knowledge is power! Changes are ongoing in the MM space. Keep up with the latest treatment options and research on MM topics. Ask your health professionals questions.
- Build a support network (family, friends, support groups).
- Practice self-autonomy: Do what you can for yourself, and also don’t be afraid to ask for help and what you need from your network.
- Prioritize self-care: Remember to do some of the things that bring you joy and happiness.
- Stay positive and hopeful: Mental health is so important in the cancer journey. Do whatever you need to do to stay healthy mentally.
“Above all,” says Jawanna, “remember that you are not defined by your diagnosis. While living with multiple myeloma presents its challenges, it’s also an opportunity to appreciate life, cherish meaningful connections, and find strength in resilience. Be kind to yourself, stay informed, and lean on your support network as you navigate this journey.”