If you had told me a few years ago that I’d be battling stage 4 cancer as a young Black woman in my 20s, I never would have believed you. But here I am, and I’m fighting.
It began before the pandemic when a seemingly harmless lump on my knee kept growing and restricting my ability to walk normally. Despite visiting an orthopedic surgeon, they just brushed it off as needing physical therapy. It took months of persistence and the tumor continuing to enlarge for them to finally order the scans and biopsy that revealed in July 2020 I had synovial sarcoma, an extremely rare cancer.
After I got a second opinion at a more experienced and high-quality hospital confirming that it was indeed cancer, I went through regular chemotherapy, radiation, and eventually an extraction of the tumor in November 2020. Despite being in remission for six months, the cancer decided to return and spread to my lungs. I had gone from what was once a minor knee issue to wrestling with stage 4 cancer.
My oncologist quickly presented me with two clinical trials that had shown remarkable initial success in keeping some sarcoma patients alive and disease-free for over a decade. Given my grim prognosis otherwise, it seemed like a no-brainer to sign up.
However, he did warn me that for reasons still unclear to researchers, Black and Hispanic people tend to lack the specific biomarkers required for one of the immunotherapy trials. Sure enough, while I qualified for the other MAGE-4 trial, I felt that sting of potential discrimination built into the medical system.
The MAGE-4 trial involved an incredibly complex process—extracting my white blood cells, genetically engineering them to contain the MAGE-4 protein so they could better detect my cancer, wiping out my existing immune system with harsh chemo, and then reinfusing those “supercharged” cells back into my body. It was brutal, but I was willing to go through it all if it could save my life.
For a while, it seemed to work like a miracle. Scans showed my tumors gradually shrinking with this experimental therapy. My family and I were overjoyed. But then the unthinkable—new tumors emerged.
My doctor’s words still ring in my ears: “We’re learning that synovial sarcoma can evolve and stop responding to therapies that were once effective.” Back to the drawing board while my care team searched for other viable clinical trials.
In the meantime, I’ve been managing my disease with chemotherapy, the same drugs. But I’m still grateful to be here and have access to these treatments at all. The medical costs have been staggering – even with my workplace insurance, I’ve racked up tens of thousands of dollars in out-of-pock
et expenses. Without a good job and coverage, I’m not sure how I could have paid for it all.
That’s why I’ve felt so compelled to keep working full-time throughout this ordeal. The only extended leave I took was for three months surrounding the MAGE-4 trial when I was essentially hospitalized for the procedure and recovery.
Staying employed hasn’t just been about the money and benefits, though. It’s helped me maintain some sense of normalcy and reminder of my identity outside of just being “the cancer patient.” My coworkers have been supportive, and knowing I have that community to return to has given me incredible strength.
Of course, I’ve found an even more powerful community by sharing my journey so openly on social media. What started as a way to relieve boredom during chemo sessions has blossomed into an incredible network of other cancer warriors and chronically ill folks who simply get it. We understand the unique challenges of navigating healthcare as people of color and not always feeling heard by doctors.
That’s a big reason why I’m such a passionate advocate for more Black people considering clinical trials when possible. If our communities aren’t represented in the data driving new therapies, then there’s no way to ensure those treatments will be effective for us. By joining trials, we can play an active role in pushing research to be more equitable and inclusive.
For me, if I hadn’t taken those chances on clinical trials, I’m not sure I would even still be here. The treatments so far haven’t beaten my cancer for good yet, but they’ve continued extending my life and giving me more treasured days with loved ones. With more research and more diverse trial participants, I’m hopeful that a cure is on the horizon.
So I’ll keep fighting, keep sharing my story, and keep inspiring more people to seriously weigh these opportunities. Every person who joins a trial is participating in medical progress that could impact millions down the line. We owe it to ourselves and our communities to be part of that fight for better treatments and better representation in research. Our lives could literally depend on it.
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