By Stephanie Rivera, CEO of Lazarex Cancer Foundation
I have cancer.
I’ve heard far too many people share that sentence with me in my 30 year career doing community health work. But this is the first time I’ve ever said it myself.
I have cancer.
I’ve long counseled, advised and advocated for others when they get a cancer diagnosis but let me tell you – it’s a whole different story when you get the diagnosis yourself. It happened to me this Fall. I was diagnosed with Stage 4 Papillary thyroid carcinoma – simply put thyroid cancer.
My prognosis is good, but the fight – as with all cancers – won’t be easy. What’s interesting is that I find myself facing this diagnosis in two ways – as a patient and as CEO of Lazarex Cancer Foundation, which has long been dedicated to helping cancer patients on their journeys. I know the knowledge I gain in the next few months will impact me both personally and professionally and ultimately enable me to help more people in the future.
Inspired by our Lazarex VIPs (Very Important Patients) and the way they so willingly and bravely share their stories to help others not feel alone, I’ve decided to do the same. While I will temporarily lose my voice as part of my cancer treatment, I am committed to speaking out about the lessons I am learning along the way and I am going to be as transparent as possible in sharing my story. I see it as an important way to continue my work to bring more equity, fairness and access to cancer care.
My voice will only be gone for a few weeks. The problem is many cancer patients don’t feel they have a voice in their journeys at all. Our healthcare system with its many challenges and barriers often leaves patients feeling dismissed, confused and not seen or heard. In my position as CEO of Lazarex Cancer Foundation, I have a passion and a platform to highlight and work to change this. Now, through my own journey, I am experiencing these challenges firsthand and as a Hispanic woman, a mother and a CEO, I believe I have a responsibility to talk about it.
My cancer journey started three years ago when I had spine surgery to address chronic pain. During the diagnostic testing, doctors discovered nodules in my neck which led to the discovery of a mass the size of a golf ball on my thyroid on the right side. It was big but doctors said it was benign and they weren’t worried because these kinds of tumors stay benign 95% of the time. There were two nodules on my left side that were smaller. After an initial ultrasound and biopsy, they said we would watch it carefully and have annual ultrasound tests. It was interesting to note, that one of the nodules on the left side could not be biopsied.
I had regular follow-ups through the years. But there have been multiple times when I’ve had a suspicion that something wasn’t right. I asked more than once if we should have a follow-up sooner than was scheduled or if we should take a closer look at things with more intensive tests and I was repeatedly told it wasn’t necessary.
Then this Fall, a regularly scheduled biopsy showed my tumor had metastasized. I now have Stage 4 cancer that’s spread to my lymph nodes.
Advocating for myself
You might expect that my first reaction upon hearing this would have been fear, sadness or panic. But it wasn’t. It was actually relief. I had long been feeling like I was overreacting each time I reached out and expressed concern that my voice sounded raspy or my neck didn’t feel right. So when the diagnosis came, the first thing I felt was the relief of knowing I wasn’t overreacting in expressing worry. Also, I finally understood what was going on in my body.
As someone who’s devoted her career to fighting for equity and access and working to give patients a voice in their healthcare treatment, I have been shocked by how quickly and completely I lost my own voice these last three years. A hospital gown is a great equalizer and hospital settings, by their nature, can be minimizing, especially for patients of color. I’ve always known this. I do a lot of work with communities that don’t have access to healthcare or don’t receive equitable healthcare. It’s my life’s calling so I’ve unfortunately seen it many times.
Now I’m feeling it too.
Advocating for others
I know I’m not alone in losing my voice in the healthcare setting. Serena Williams’ birth story has come to mind for me many times. As has all the research on maternal death rates for Black women, higher cancer rates and mortality rates among patients of color and so many more studies and stories of inequities.
Right now I need to focus on my own fight. But I promise you, in time, I will absolutely be using my personal cancer experience to intensify my advocacy efforts and our efforts through Lazarex Cancer Foundation to create more equitable healthcare settings and empower people, especially BIPOC (Black, Indigenous and People of Color), to find their own voice in their health and cancer journeys.
I am going to lose my voice as I recover from surgery. But honestly, in many ways, I feel like I’ve found it too. I know my voice will be stronger than ever on the other side of this experience – not only for myself but for everyone else who has at some point in their lives had to say these three very difficult words – I have cancer.
Stephanie Rivera is CEO of Lazarex Cancer Foundation. Connect with her on LinkedIn and learn more about Lazarex at Lazarex.org