How Chemo Divas is providing a much-needed voice for WOCs (Women of Color) with cancer
“I think that there’s just so much that goes into the experience of different communities, underrepresented communities, that medicine and practitioners aren’t necessarily thinking about. They’re kind of treating just the disease and not the whole person.”
Tatiana Tate started Chemo Divas Foundation in honor of her late mother, Paulette Steeves. Chemo Divas supports women of color affected by cancer through education, inspiration, and community. Earlier this year, Tatiana reached out to us on Instagram after seeing a post about our Chike Springer Legacy Scholar, Dr. Luis Malpica. We are funding part of Dr. Malpica's research on lymphoma, and coincidentally, Dr. Malpica was her mother's doctor. Tatiana had terrific things to say about Dr. Malpica!
Dr. Malpica is one of the countries few experts in a rare form of lymphoma associated with the Human T-cell lymphotropic virus type 1 (HTLV-1) that widely affects people in Japan, Caribbean islands, Latin America, and some parts of the southeastern United States. When associated with lymphoma, this virus complicates treatment options and patient outcomes. Viruses like HTLV-1 or autoimmune diseases like Hemophagocytic Lymphohistiocytosis (this is what Chike had!) are understudied and often rely on a few experts (if any) who specialize in lymphoma AND these associated diseases. Our sponsorship of Dr. Malpica helps fund research and advocates for this kind of work and precision. Teaming up with Tatiana and hearing her mother's story has been so inspirational! We share the same goals of advocating for patients and raising awareness about the complexity of lymphoma.
Chike Springer Foundation founder and CEO, Lyndsay Springer, spoke with Tatiana about the platform she created to provide WOC (Women of Color) with a space to share their cancer journeys. By sharing these stories, Chemo Divas strives to promote representation in the cancer community, advocate for fellow Divas and inspire one another. Watch the interview below and show her some support by following her on Instagram (@ChemoDivas) and Facebook.
Interview Transcript
LYNDSAY: Hi, everyone. It's Lyndsay Springer from the Chike Springer Foundation. We really love to partner with other organizations within the lymphoma community. And today we have Tatiana Tate here from the organization Chemo Divas, which is an Instagram page dedicated to Tatiana's mother, who had a very rare form of lymphoma associated with the HTLV-1 virus. I absolutely love her page because it's really about bringing awareness to the treatment journey. It's extremely positive and extremely uplifting. Dr. Malpica, who is the doctor that we sponsor through the Lymphoma Research Foundation, was actually her mother's doctor. So that's a super cool connection there, and we're just so happy to be connected with you. So thank you, Tatiana, for taking the time today to talk to us a bit about your story and what you're trying to do to impact the community.
TATIANA: Yeah, absolutely. Well, thank you so much for having me, Lyndsay. I came across your page. I love what you're doing. And like you said, I saw Dr. Malpica's face and I was like, that's my mom's doctor. So, you know, small world, but so happy to be here.
LYNDSAY: Awesome. So can you tell us a little bit more about your story and what inspired the Chemo Divas IG Page?
TATIANA: Yeah, so I started the page back in 2020. My mom was diagnosed with ATLL, so Adult T cell lymphoma and leukemia. She had the lymphoma version back in 2019, October of 2019 and [it's] a very rare form of cancer. We ultimately participated in a clinical trial out in Houston, we're originally from Atlanta. So while we were in Houston as part of the trial, my mom was in the hospital, and I remember that was kind of the first time that we were separated for a long amount of time. She was in there for ten days just from side effects from the trial. And I thought to myself, oh, let me find some women on Instagram, some stories to send to her, to inspire her. And I remember scrolling through and not really seeing a lot of people that looked like her. I did find one page that I followed and they said, "Hey, you can submit pictures of yourself, you know, we're going to post other people on our page." And I submitted a picture of me and my mom and I noticed, like, okay, we're not getting reposted. And then I saw kind of a thread of people saying, "I tried to post to different pages. I never get selected. There's no one that looks like me." And I kind of looked at that and said, 'why don't I just do it?' You know, I feel like a lot of the times we kind of want to be included at the table, but it's kind of like, well, create your own table. So I said, I'm going to create this page and I'm going to give these women a voice and shine a light on them so they don't feel like they have to beg someone else to kind of shine the light on their story. So that's kind of how it started. And I tried to just incorporate information that we learned throughout my mom's cancer journey, showing women that look like us. Other women could see, "Hey, I'm not the only one. There's people like me who are going through this." And there's no such thing as a dumb question, a lot of us are coming from a similar background or similar communities. And this is the experience that we're having and it's similar to so many others out there that aren't being shined a light on.
“I feel like a lot of the times we kind of want to be included at the table, but it’s kind of like, well, create your own table. ”
LYNDSAY: I absolutely love that you said create your own table, because a lot of times there's so many things that you don't think of until you're actually going through the treatment journey and you actually see those gaps and same situation for us. You know, we saw some things that that needed to be addressed and some things that we could use Chike's story to really bring awareness to these gaps. So I really love what you're doing. We've talked before about some of the mental things and some of the just things that could make things better, easily, just by being more inclusive. Can you tell me a little bit more about who your mom was before her diagnosis and kind of what changed after her treatment began?
TATIANA: Yes. So my mom was a superhero! My mom was a superhero. There's a picture of her as like a Superman, like headband, that I always look at because I'm like, she really was like, this person is so, so vibrant, so, like, warm and loving. She was very into health and fitness. Her mother had cancer. A lot of her siblings did. It's just something that has been unfortunately pretty common in our family. And I think my mom kind of felt that that was something that could potentially be a part of her life story. So she did everything in her power to not let it be that way. But I always said, you know, the energy that she had and the fact that she was into health and fitness, she helped so many people throughout theirs. Before [she was] diagnosed with cancer, she was busy personal training. She was giving people meal plans. She was coordinating boot camps just trying to kind of bring health and fitness to our community as well, make it affordable, make it accessible. And through that, she met so many people and connected with so many people. And I think that it's kind of a testament to the fact that, yes, cancer ended her life, but the impact and the legacy that she had of traversing your body, your health while you have it and taking care of yourself. That, I feel like, is kind of been the legacy that she has left behind. So I think a lot of the parts of her journey that kind of transcended is kind of related to who she was before. These were things that she was always interested in, always trying to tell people and share with them. And I think that it all kind of ended up being a culmination of take care of your body, you take care of yourself, cherish the life that you have while you have it, because you never know you can be the healthiest person and end up with cancer. You can be someone that, you know, maybe not take care of their body as much and end up with cancer. But I think no matter what her thing was, kind of cherish what you have in the moment and don't take it for granted.
“Cancer does not discriminate. You can be the best person. You could be the worst person, young or old. Cancer affects everyone, all ethnicities, all religions, everyone equally. And unfortunately, there is some underrepresentation in research, which is really what the Chike Springer Foundation goes after.”
LYNDSAY: Yeah, I love that. We always say that too, the cancer does not discriminate. You can be the best person. You could be the worst person, young or old. Cancer affects everyone, all ethnicities, all religions, everyone equally. And unfortunately, there is some underrepresentation in research, which is really what the Chike Springer Foundation goes after. And people of color is one of the groups that are underrepresented. So why do you think it's important to share perspectives from people of color, especially women of color, going through the cancer treatment journey?
TATIANA: Yeah. I think education and representation are the two main things that can help and have an impact in the fact that these underrepresented women are kind of...they're...I feel like underrepresented women aren't necessarily focused on and understood in a way that will impact the quality of life and understanding that there's a difference in what people go through and kind of what brought them to this cancer journey and what they will have to continue to face as they go through it. So I think by focusing on kind of the differences that people have in their lifestyles and what they've been exposed to, I've done different kinds of research on the fact that like the type of food, food deserts, people not having access to physical activities in their neighborhoods, not having access to even quality hospitals and care and being in rural environments or oversaturated urban areas. I think that there's just so much that goes into the experience of different communities, underrepresented communities that medicine and practitioners aren't necessarily thinking about. They're kind of treating just the disease and not the whole person. And I feel like kind of giving these women a platform and sharing their stories and kind of understanding the commonalities between their stories shines the light on that information. And I know you had said when we spoke before, the data is all there. It's just that people aren't putting the dots together. And as I talk to these women and get their stories and read through their kind of accounts about themselves and like, there's so many similarities of what people are experiencing, but when you're not kind of looking at that side of the coin, you're not able to kind of piece it together. So I feel like it's just kind of putting it out there and you're getting to see a holistic view when you are kind of perking your ears up to a different experience, as opposed to kind of what's more general and commonly put in front of us.
LYNDSAY: Yeah, absolutely. You know, the whole person concept is something that we advocate for. Like you said, there's so many missed data points that could easily be collected on age, ethnicity, lifestyle and things that I know working with veterans groups that we also look at because there's a high exposure rate in lymphoma is tied to exposures to different environmental effects.
We absolutely 100% support you. You are such a badass. I can feel like who your mom was through you in how you talk about her. It's amazing and we're so happy to be working together. Awareness is such a shared goal and building up the community. So thank you again for taking the time to really talk about what you want to do and about your page and what inspires you.
TATIANA: Absolutely, absolutely happy to do it. And I think that that the beautiful thing about it is, you know, everyone's on social media. You're spending too much time on it, all that stuff. But I do feel like the sense of community that I found in in the @ChemoDivas page coming across your page and other pages. It's made such a difference, I think a lot when my mom was here, but more when she passed away, kind of knowing that, of course, my family and friends are so supportive, but they don't all have that sense of context. They all don't understand what it is to even see people interact with them online and then watch them do really well, and then all of a sudden they're gone. Or they are, you know, they've relapsed. I think it's a very unique situation to be put in, and it's really difficult to face when you don't have other people to talk to who have gone through it. So that's my whole thing. I want to build some sense of community so that people are able to kind of feel like they have a safe space in a place where people understand them. So that's why I love what you're doing. I love that we're able to connect and find one another and share our experience and see like, I know we're talking like, "oh my gosh, there's so many similarities." And it's like, you're not the only one. I like to say no one fights alone because they're not fighting alone. Everybody has gone through something similar to what you've gone through before. You just need to be able to find those people.
LYNDSAY: Absolutely. I thought that finding that community and finding other people as well was extremely healing for me. Just because exactly what you said, family, friends, you know, they can be empathetic, they can be supportive, but they just don't get that up and that daily, up and down, you know, waiting for the scan results, waiting for bloodwork to come back and everything that really stresses you out that, you can't even communicate it sometimes. So finding that community that just gets it is was for me very healing and very helpful, trying to figure out what I wanted to do, because ultimately Chike wanted his life to matter and to go beyond his time here. He wanted to make that change and make that impact and use his story to do that. So absolutely. We're so aligned and I can't wait to see some of the things that we can do in the future together.
“Chike wanted his life to matter and to go beyond his time here. He wanted to make that change and make that impact and use his story to do that.”