When Data Meets Dogma: My Fight to Use Data to Drive Strategy

My Actual Test Results

The night before my first chemotherapy treatment, I sat staring at my NeoGenomics report with a sinking feeling in my stomach. The data was crystal clear: KRAS G13D mutation, MSI-High status. After weeks of research with my advocate Oscar Sierra, scouring PubMed studies, the science was unambiguous—chemotherapy likely wouldn't work for my specific tumor type, but immunotherapy would be highly effective.

I had done everything right. I'd advocated for comprehensive genomic testing, invested time learning to interpret the results, and prepared my body like I was training for a marathon. Because I knew the truth: if you start strong, you end medium. If you start medium, you end weak.

The Data Doesn't Lie (But Sometimes It Gets Ignored)

Walking into that infusion center the next morning, I carried my genomic report like evidence in a courtroom, literally standing next to my best friend who was an attorney. I was armed with peer-reviewed research showing that MSI-High colorectal cancers have poor response rates to standard chemotherapy but exceptional responses to immune checkpoint inhibitors.

My oncologist—the chief of staff at a major Atlanta medical center—barely glanced at the report.

"That doesn't matter," he said. "Trust me. Chemo is the right drug."

In that moment, I faced every cancer patient's nightmare: data versus dogma. Here was an expert with decades of experience telling me to ignore the very personalized medicine that represents the future of cancer care. How do you challenge the chief of staff when you're sitting in a hospital, about to receive treatment that could save or poison you?

The Poison I Knew Was Coming

I submitted to his authority, but the knowledge gnawed at me. Chemotherapy can be a lifesaver—if it works for your cancer type. For me, it was likely poison delivered through an IV drip.

Despite this crushing reality, I'd prepared for battle. I wore my favorite band t-shirt, hoping desperately I'd live to see them perform again. I brought art supplies to find flow state during treatment. My best friend sat beside me, ready to ease my anxiety through whatever came next.

But halfway through that first infusion, my voice betrayed my fear.

An Angel in the Infusion Center

The Emory chaplain appeared like an answer to a prayer I hadn't even spoken. She heard the change in my voice—the tremor of someone who knew she was being poisoned but felt powerless to stop it.

"Why are you nervous?" she asked gently.

When I explained my situation, she didn't offer platitudes or false comfort. Instead, she said something that changed everything: "You have to change your mindset, and I invite you to do whatever you need to make that happen."

"Can I throw a theme party?" I laughed, half-joking.

"HECK YES!" she replied without hesitation.

She told me about Julie in John's Creek, Georgia, who brings cornhole boards to infusions and turns treatment into play. This chaplain—this absolute angel on earth—gave me permission to focus my energy on joy instead of death.

The Power of Preparation Meets the Reality of Choice

That first session wasn't terrible. My months of physical preparation paid off. But the real victory was mental: I'd learned to advocate for myself while finding joy in impossible circumstances.

The genomic testing data that my oncologist dismissed would eventually prove prophetic. Those PubMed studies Oscar and I pored over would guide decisions that saved my life. And that chaplain's permission to choose joy over fear would become the foundation of everything that followed.

This is why I fight for patients to become Data G's—informed advocates who gather comprehensive information about their unique biology. When you have data, you have power. When you have power, you can make informed decisions even when experts disagree.

Your genomic profile isn't just numbers on a report. It's your roadmap to personalized treatment. Don't let anyone—no matter their credentials—dismiss data that could save your life.