raig daniels
I didn't wait to get organized. Day one, I was already building the plan.
The Problem With Being a Patient
The default mode is passive. You show up, you listen, you follow instructions. Your doctor knows things you don't. That's true. But my doctors are also managing a full roster of patients across multiple institutions, in at least two languages, while I'm managing one case — mine.That asymmetry is a problem if you let it be.
I didn't let it be.
What the CEO Does
The CEO doesn't perform the surgery. Doesn't administer the chemo. Doesn't read the scans.But the CEO knows what's in every report. Knows what each imaging modality measures and what it doesn't. Knows what questions to bring to the next meeting. Knows when the data says one thing and the plan says another — and says something about it.
My oncologist treats the cancer. I manage the process.
Different jobs. Both required.
The Document
I'm an American living in Portugal, receiving treatment across two institutions, in a language I don't speak natively, potentially heading toward a major surgery in another country that will require convincing a U.S. insurer to pay for it.That is a logistics problem, not just a medical one.
So I built a document. A single, current, portable record of my entire case — my own oncology summary that I control, I maintain, and I can hand to any surgeon, coordinator, or insurance reviewer anywhere in the world without waiting for a records department to respond.
It covers:
- Full cancer history — thyroid carcinoma in 2019, colorectal adenocarcinoma in 2024, peritoneal recurrence in 2025
- Surgical pathology from both primary surgeries
- Complete chemotherapy history — every regimen, every dose adjustment, every reason why
- Staging and imaging timeline — every scan, every finding, in chronological order
- Genomic profile — FoundationOne CDx results, what they mean, and what they rule out
- Current disease status and treatment response
- Relevant comorbidities and medications — anything that affects surgical or anesthetic planning
- A summary specifically framed for CRS-HIPEC candidacy review
When Dr. Sardi's coordinator asked for my history, the answer was obvious — build a resume for my medical life. The execution was not. Two years of records. Multiple hospital portals. A hard drive. A long thread of emails. Nobody organizes that for you.
Why This Took Work
Nothing about this was automatic. My surgical records are at CUF. My chemo records and imaging are at Champalimaud. My prior history is split between hospitals in Iowa and Wisconsin. Everything in Portugal is in Portuguese.I had to request, compile, translate, and synthesize two years of medical records across two countries and four institutions.
That is CEO work.
What It Actually Changes
The document doesn't treat the cancer. It doesn't make the hard decisions easier.What it does is eliminate wasted time. Every consultation starts at the current state of play — not at the beginning. Every surgeon I speak to gets the same accurate picture. Nobody is working from partial information or a verbal summary I gave from memory six months ago.
It also changes how I show up. When you know your own case this well, the dynamic in the room shifts. You're not waiting to be told what's happening. You already know. You're there to discuss what comes next.
That's the difference between being a patient and running the company.
The Takeaway
I'm not suggesting everyone build a forty-page oncology summary. That's not the point.The point is: nobody is managing your cancer journey for you. Your doctors are doing their jobs. But the connective tissue — the continuity, the institutional memory, the advocate in every room — that's yours to provide if you want it done right.
You can wait to be managed.
Or you can run the thing.
I know which one I picked.