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Celebrating the Original ‘Chemo Diva’
Upon receiving a lymphoma diagnosis, it’s not uncommon to search for others like you who are going through a similar experience. That sense of community and support, of seeing your own story reflected to you, can provide much-needed encouragement and help you feel less alone.
But what if you can’t easily find a community with stories of people who look like you? If you’re Tatiana Tate, founder of Chemo Divas Foundation, you create your own.
Tatiana, a 30-year-old Black accounting professional based in Connecticut, started the Chemo Divas Foundation in 2022 after witnessing the disparities in our healthcare system throughout her mother’s 16-month lymphoma journey.
Tatiana’s mother, Paulette Ann Steeves, was first diagnosed with Stage II HTLV-1 associated adult T-cell leukemia/lymphoma (ATLL) in October of 2019 at age 48. An active bodybuilder and runner, Paulette was in the best shape of her life when she was diagnosed, and she was determined not to let lymphoma take away her love of living. Tatiana was just 26 at the time, recently married, and building a life with her husband.
“My mom had always been my brother Elijah’s and my rock growing up – she was always there for us. So when I picked up the phone at work one day and she told me that she had lymphoma, I froze and fell to the floor – I couldn’t stop crying,” said Tatiana. “I had never had a panic attack before, but I had one that day. I knew from that moment on that I was 100% committed to being there for my mom the way she was always there for us.”
Like many people first diagnosed with a serious illness, Tatiana and her mother found themselves thrown into an unfamiliar healthcare system and a steep learning curve about caregiving and Paulette’s rare lymphoma type. In their research, they learned that ATLL is a rare and often aggressive form of T-cell lymphoma that can be found in the blood (leukemia), lymph nodes (lymphoma), skin, or multiple areas of the body. ATLL has been linked to a virus (human T-lymphotropic virus type 1 [HTLV-1], often found in people from the Caribbean, parts of Japan, and some areas of South and Central America and Africa. Less than 5% of those carrying the virus will develop lymphoma, but those who do require immediate treatment due to the aggressive nature of the disease.
“Initially, the vocabulary around lymphoma felt so foreign to us, and there were times when we were made to feel less than by medical professionals, but my mom was always so positive throughout everything, which is a testament to her spirit,” said Tatiana. “One of the first things she said after being diagnosed and starting chemotherapy treatment was that if she had cancer and had to undergo chemotherapy, she was going to be a ‘Chemo Diva.’ It stuck, and before long, her friends were sending her T-shirts with ‘Chemo Diva’ across the front. She would arrive at her chemo appointments and announce to the front desk that ‘The Chemo Diva is here!’”
Out of Hardship, an Inspiration
Tatiana accompanied her mom to six different hospitals around the country as she attempted over 10 different treatments, including chemotherapy, radiation, and clinical trial immunotherapy, helping her mom keep that same light spirit along the way. During those trials, the COVID pandemic made treatment even more challenging, and Tatiana was not allowed to stay with her mom in the hospital due to safety protocols. To let her mom know that she was thinking about her, Tatiana turned to Instagram to find inspirational and humorous posts for her mom. The only trouble was that she couldn’t easily find many stories of women of color sharing their cancer journeys.
“Initially, I had a hard time finding relatable content – nobody looked like us,” said Tatiana. “So I decided to create the Chemo Divas Instagram page to celebrate women of color like my mom who faced cancer with humor, courage, personality, and flair; women who may be going through a difficult time healthwise, but who are choosing to find the fun in life even in those tough times. Over time, the page became a community and a place to show my mom and me doing TikTok dances together and our day-to-day lives as patient and caregiver.”
Beyond championing women of color facing their cancer diagnoses head-on, Chemo Divas quickly became a healthy distraction from the challenges that Paulette and Tatiana were going through.
“When you’re in clinical trials, you spend a lot of time waiting on a phone call with results or waiting for a call from your doctor,” said Tatiana. “Instead of just staring at our phones all day, my mom and I would practice our dance moves and create new content for Chemo Divas to keep our minds off all the waiting.”
A Lasting Tribute to a Life Well Lived
Unfortunately, Paulette passed away in March of 2021, 16 months after being diagnosed, but Tatiana has kept Chemo Divas going in her honor so that no woman of color will have to face a cancer diagnosis alone. Now, an official nonprofit foundation, Chemo Divas has more than 300 Instagram posts and nearly 2,000 followers who rely on the content for hope, community, resources, or a quick pick-me-up. To date, the organization has distributed $52,000 in financial aid to women of color and their caregivers. Chemo Divas’ goal is to improve health equity for women of color impacted by cancer. The organization shares resources, financial support, and the cancer journeys of women of color to provide support for others facing a cancer diagnosis.
Tatiana recently became involved with the Lymphoma Research Foundation (LRF) and found support for her mission in advancing health equity, which is one of LRF’s key initiatives aimed at removing barriers so that everyone has access to quality healthcare.
“There were times when my mom would have to go into the hospital, and even though I couldn’t stay with her in person, I could create an Instagram post sharing another woman’s story with my mom so that she knew I was right there with her in spirit. Through our Chemo Divas page, and now the Chemo Divas Foundation, my mom wound up talking with so many other women facing a similar diagnosis – whether it was blood cancer or not. Chemo Divas helped my mom and me feel less alone, giving us a purpose bigger than ourselves in sharing the joy of our day-to-day experiences with others who need it.”
Tatiana’s long-term goal for Chemo Divas is for the organization to be a trusted source of information and support for women of color as they navigate cancer care.
“I’ve spoken with other women of color who have told me that when they asked their social worker, doctor, or medical team if there were organizations out there for women of their background, they were told ‘no,’ and Chemo Divas is proof of that simply not being true,” said Tatiana. “Like LRF, Chemo Divas is giving young women of color a voice and a sense of community, and that goes a long way to building awareness and creating positive change.”