We know there is a lot of information demanding your attention after a diagnosis, and that it can lead to its own kind of mental fatigue. We also try to make sure that we are following the many people, organizations and programs that can offer support as you navigate cancer in the workplace and in life.
Jasmine Souers and Marissa Thomas are two leaders whose voice and work you won’t want to miss. Through their non-profit organizations, both together and separate, they offer programs, services and community for people of color affected by cancer. They were kind enough to agree to an interview, and we are grateful to share what they have to say. Be sure to stay tuned until the end for links to follow and get involved.
Jasmine and Marissa, you both first met online, then in person at a Young Survival Coalition event (another long-time partner of CAC’s) in 2019, and for the last 3 years you have partnered to run For the Breast of Us, a community for women of color affected by breast cancer. Would you tell us a bit more about how you met, what led you to create a company together, and the mission of For the Breast of Us?
JASMINE: After meeting at the YSC Summit in 2019, we happened to attend a breakout session about representation in breast cancer. It turned out that session was about representation in clinical trials. Similar to the representation of imagery and stories of black women and other women of color in the breast cancer communities, the disparities and lack of representation was shocking. We initially created For the Breast of Us as a way to intentionally amplify the stories and experiences of women of color in the breast cancer community that weren’t being seen elsewhere. Today, the mission has broadened to help women of color make the rest of their lives the best of their lives after a breast cancer diagnosis.
MARISSA: After being diagnosed with breast cancer we noticed, especially on social media, there was not a space specifically for Women of Color affected by breast cancer. We knew that we could change that by providing a community that is inclusive to Women of Color where they could connect with each other, share resources and learn about their diagnosis so they could advocate for themselves. For the Breast of Us has grown bigger than what we thought it would and is continuing to grow. Our mission has always been to help others live their best lives after a diagnosis, so we will continue to do this by providing access to clinical trials to make sure there are more Black and Brown women included, local community events, partnering with advocacy groups to provide training to thrivers, educational seminars and giving back to the community with our Baddies Give Back Program.
For the Breast of Us is so good at fostering a sense of community – and it’s inspiring that it started with the two of you. What does community mean to you? Both in the sense of finding a community where you feel seen and heard, and in the spaces where someone may be struggling having not yet found a community of support and shared experiences?
JASMINE: Community to me is family. It’s sisterhood. It’s knowing I have someone I can reach out to that understands something not many people can understand unless they’ve lived it. Life without community can feel hopeless and isolating. We need to see women who look like us thriving and overcoming challenges to remind us it can be done. And we need to see women who look like us advocating and raising awareness to show the harsh realities and challenges of a breast cancer diagnosis. Seeing is believing.
MARISSA: I have a saying that goes, “If I eat, you eat too!” and that essentially means sharing the opportunities and resources that I have (or come into contact with) with those around me. Lifting up as we go and making sure to not leave anyone behind in the process. I have the privilege of being an advocate and voice in this space and it is my duty and obligation to pass that along to the women around me. Community is learning from those around you, together, as we all come from different walks of life and raising those voices to become stronger as one. We have always said “We didn’t have a seat at the table, so we built a table of our own”. And anyone in our community can come sit at the table when they’re ready. There’s always a seat waiting for them.
You both have full-time jobs and run a company. What was your experience balancing work with your diagnosis and treatment? What is your experience now juggling a full- time job in the cancer space? And what has work meant to each of you as you’ve navigated cancer, and supporting others throughout their experience?
MARISSA: A cancer diagnosis is hard navigating on its own and throwing work into the mix can be a lot to juggle. I work in healthcare so I knew what treatment and my medical care may look like for me. My team was very supportive doing things like donating leave time so I didn’t have to worry about working during active treatment. One point of advice I would share with thrivers is to be completely upfront with your co-workers as long as you feel comfortable doing so.* For example, when I returned to work, it was hard for me to remember how to do some tasks (thanks chemo brain!). I said to my coworkers, please be patient with me because it is hard for my brain to compute what is happening but I will remember it soon. That helped set expectations for myself and my team.
Having a full-time job and running For the Breast of Us is a lot of work but I wouldn’t change it for the world. I know one of the reasons I’m here is because I have a responsibility to serve the women in our community. To give them the resources and community I wish I had when I was diagnosed like access to advocacy training from partners like Living Beyond Breast Cancer and sharing the content from Cancer and Careers on how to navigate work and their diagnosis.
*Note from CAC: Prior to disclosing your diagnosis at work or online, we always recommend considering all the angles, and especially your own unique situation and needs. To help you be as informed as possible before making a decision, check out our articles on Sharing the News and Building and Protecting Your Online Brand.
JASMINE: I was waiting on the results of my first mammogram and ultrasound to decide if I should take a new job. I was misdiagnosed and took the job, but accurately diagnosed in my first 7 or 8 months of employment. It was challenging. There was an investigation with our disability provider to make sure I wasn’t diagnosed before I started the job. I was in the middle of leading a big project that was new to the organization and therefore didn’t have a lot of cross-training support. Ultimately, I worked with my care team and decided to take off as much time as I needed after a false start and finding myself completely overwhelmed.
Five years later, I’m still at the same company. They are very supportive of my advocacy work. I love what I do, but it does require a sacrifice of time and energy. For me, there are lots of late nights and weekends. I’m currently working on finding more time to play as hard as I work.
Cancer made me pursue a purpose-driven life, take more leaps of faith and stop playing small. I could die any day and it doesn’t have to be from cancer. I want to make sure when I leave here, I leave empty, having used all of my God-given gifts and ideas to make the piece of the world assigned to me a better place.
Marissa, in your bio you mention that you’re a private person. But here you are sharing your story to help others and providing a platform for many others to share their experience in a safe space. So many members of our community are navigating all the choices surrounding what they disclose about their diagnosis – how much to share, what to share and when, especially in relation to work. Would you mind telling us a bit about your experience before you had shared your diagnosis? And what has your experience been over the years having been more public about it? What would you say to someone who isn’t comfortable being public like you are but still wants to be a support and find support?
MARISSA: During active treatment, chemotherapy in particular, I was in a dark place: sick all the time, not liking the way I looked or not knowing who the person was I was staring back at in the mirror. I had also came from a family who didn’t talk much about when they were sick, there’s a saying that you “don’t air your dirty laundry” and it’s one that communities of color live by. I wanted to change that and with a help of my close friend Cristina who was also diagnosed with breast cancer, I did just that! She encouraged me to share openly and honestly about my experience as she knew it would resonate with others. Cristina helped me break that shell and she was right. When you’re in the midst of your diagnosis, it’s not all pretty pink and lovely how it’s painted to be. I wanted to make sure what I was saying was authentic to my experience and hoped others would understand what I meant.
My advice to those wonder when to share or how, whether that be with family or friends or work colleagues is do it when you are comfortable and ready. Also there is not a wrong or a right way to do this. If you feel like you want to tell your full story, do that.** If you only want to share bits and pieces, that’s okay too! Don’t feel rushed to share your experience because people are saying you should or social media is making you feel like you should. This is your story, your experience, your life and you have to write it how you see best, especially since you are the one living it. And know your employer standards when it comes to disclosing your health. They only need to know so much to provide your benefits, leave and pay. If you do not want to go into details you do not have to do this. Protect yourself and your peace first!** There are also support groups like ours where you can seek support without being vocal or seen. That is the great thing about FTBOU, you can learn and connect with others virtually without the pressure of sitting in a in-person group to receive this information.
**Note from CAC: In order to have as much control over your work situation as possible we recommend carefully thinking through disclosure and understanding your legal rights. To learn more, visit the Legal & Financial and Back to Work After Cancer sections of our website.
Jasmine, you recently announced that you are leaving For the Breast of Us to start a new non-profit organization: The Missing Pink Breast Cancer Alliance. CAC Note for our readers: don’t worry – For the Breast of Us isn’t going away! In your announcement, you also mentioned “I realize if I only focus on directly helping patients and ignore the systems they navigate, I’ll never see the change I want to see, at least not by me.” Would you be willing to tell us more about what you have planned for The Missing Pink Breast Cancer Alliance? What have you learned about where our current systems fail patients of color? And what do you see as key opportunities for change?
JASMINE: Simply put, disparities exist in the treatment, care and quality of life of black patients and patients of color diagnosed with breast cancer. They are as urgent as higher mortality rates and financial toxicity and as minor as lower participation in wellness retreats and a lack of diversity of representation in educational children’s books.
As a perfectionist at heart, I tend to think of things as zero or 100 instead of zero to 100. I used to think of systems in terms of changing every healthcare facility or research center, but the reality is our workplace, schools, doctor’s office etc. are all systems cancer patients have to navigate. Changing the experience of one person navigating those systems is cool, but improving the experience of every person that navigates each system, be they big or small, should be the goal.
My mission at The Missing Pink Breast Cancer Alliance is to improve the lives of people of color affected by breast cancer through collaboration, education and support. We’re a multicultural, multi-disciplinary alliance of people and organizations invested in health equity for people of color affected by breast cancer.
I’ll be working to make patient advocacy more accessible; address financial barriers to quality care and quality of life after a diagnosis; elevate the incredible work that’s happening in other communities; and provide resources, tools and contacts for people to replicate and implement best practices in their community. And that’s just the beginning. More to come soon.
Thank you both so much for taking the time to share your experience with our community.
To follow Jasmine and Marissa online, take advantage of their programs, or e-mail them directly, check out the links below.
For the Breast of Us
- Website: www.breastofus.com
- Baddie 2 Baddie Breast Cancer Podcast - sharing real life experiences, education and information to help you live your best life after a cancer diagnosis.
- Baddie Behavior Podcast - a safe space for survivors and thrivers to have candid conversations about how breast cancer affects our bodies, relationships and sex lives.
- On Facebook: Search “Breast Cancer Baddies” to join the For the Breast of Us private Facebook group.
- Email: firstname.lastname@example.org
The Missing Pink Breast Cancer Alliance
- Launching this Spring! Signup for emails at www.themissingpink.org