The healthcare system is full of brilliant people. Almost none of them are holding your complete picture.

My mother had metastatic breast cancer. By the time she was diagnosed, the disease had spread to her liver.

Her treatment took the standard path.

Her care discussions, like most oncology conversations, centered on overall disease burden and systemic therapy. Reasonable. Standard. What bothered her the most was the leisons in her liver. She never really explained why but because she vocalized it, that was enough for me. After researching on my own, I found we had an expert in a more advanced way of treating metastasized liver cancer and he was in our home state. After traveling to see him, we learned that  one of her liver metastases sat near the main hepatic artery. Her Oncologist never mentioned it or even the liver metastases in general.

I learned quickly that Systemic therapy was expected to manage it along with everything else but the doctor we found from  my research told us that an untreated lesion in that location, if it progressed, could quickly become both untreatable and life-limiting. We moved forward with the recommended treatment and successfully ablated the lesion.

I didn’t accept the standard treatment protocol as the answer. I researched interventional options for hepatic metastases and learned that cryoablation, which is  freezing the tumor directly, was viable for her case. After the successful ablation, the treating Oncologist didn’t believe the scan results as in literally didn’t believe the lesion was gone. i had to push her to review the scan again and explained that what she was seeing was the image of where the lesion had been.  Needless to say, I was not the Oncologists favorite person after that but I didn’t care. I learned a lot of things from that process especially the limitations of healthcare and healthcare providers. What I got was even more valuable….. time, precious time with my mother.

More holidays. more conversations. more of my mother.

The education no one asks for

That was the beginning of an education I never asked for but have never stopped receiving.

In the years since, I’ve fought for a diagnosis for my son when no one could explain his suffering — the kind of fight where you learn that “we’re not sure” too often becomes “we’ve stopped looking,” unless someone refuses to let it. I’ve navigated rare disease inside my own household, living with conditions uncommon enough that most physicians will never knowingly see a case. And I’ve managed complex chronic illness of my own while co-founding a biotech company and personally leading a medical device through FDA 510(k) clearance — teaching myself regulatory affairs from the ground up because we couldn’t afford to hire someone who already knew it.

Somewhere along the way, I realized these two lives,  the biotech founder and the family advocate,  were actually one life. The same skills. The same relentlessness. The same core belief:

Our healthcare system is full of brilliant, dedicated people, and almost none of them are holding your complete picture.

The oncologist sees the cancer. The radiologist sees the scan. The specialist sees their organ system. The insurance company sees the billing code.

Somebody has to see you.

That’s the work I’m stepping into now: specialized patient advocacy for people facing rare diseases, complex chronic conditions, and the moments when medicine says “we’ve done all we can” before every option has truly been explored.

In  the next few posts, I’ll share how I actually do this work, not platitudes about “being your own advocate,” but the concrete methods:

  • How to build the complete picture that changes every appointment that follows
  • The specific questions that change outcomes
  • What to do when you’re told “there’s no approved treatment”
  • How rare disease families can find the expertise that’s out there but hidden
  • Why regulatory fluency is an advocacy superpower

If you or someone you love is lost in the system, this series is for you. Not because you should have to become an expert to receive good care but because until the system changes, someone in your corner needs to be.

I’ll be that person for as many people as I can.