The Startup Body: managing my health #LikeABoss
Personalized medicine come to life
Hair and tumor management have many parallels: both operate in 3 month cycles, do weird things in response chemo, require daily tending, are growing 😍😭, and need the help of an expert. For my hair, I share my general desire with my hairdresser Anthony and let him decide how to implement it. Anthony handles it beginning to end, leaving me with a beautiful new ‘do. Even when my hair got more complicated when I lost it, Anthony had a regrowth plan, showed me how to care for my wigs, and even washed and styled them for me. He’s been my hair angel.
Getting my hair done is pretty straightforward. I don’t need to go to one person to get the shampoo, another for the cut, another for the color, and a final expert for styling. Imagine each person giving you different and sometimes conflicting advice, including in which order you should do it. Also imagine each one of these people at different salons, in different cities. And your credit card (insurance) potentially requires months of back-and-forth and approvals to schedule the appointments. It would be a total mess, likely resembling the resulting mop on top of my head.
Yet this is the experience of modern medicine with highly specialized doctors working in silos with the patient the only touchpoint between them. Ill-equipped patients are forced to navigate complex systems and decisions on their own.
It’s become clear to me that waiting for one doctor, one cancer center, or one treatment is not the answer. There is no mythical silver bullet waiting to be discovered. This is truly up to me to create the solution and chart the path.
In my journey, I’ve moved through three distinct chapters:
Keeping it simple with one institution navigating all of my care (2011-2017)
Triaging between UCSF and Ohio State, aiming for consensus between the two teams (2018-2020)
Running my health like a startup and recruiting my own team of experts to dictate my care, tapping into medical institutions and organizations that align to my needs (2021-present)
Enter: Goodbye Ursula 🙅♀️, the Startup
A cocktail of luck and research led me to discover Research to the People last year, an innovative non-profit that co-leads patient research to develop personalized medical insights. They have helped assemble a team around my case.
I now have a 8 person team dedicated team, including:
Peter Kane, the founder of Research to the People (RTTP), who is helping guide the overall process. RTTP recently joined Stanford, and so they have access to teams and resources through the Stanford Healthcare Innovation Lab.
Emily Wang, the Director of Operations for RTTP and a Thiel Fellow. She is helping setup the infrastructure for RTTP to scale. This year, we have a four person patient cohort.
Diana Saville, the Co-Founder and CCO of BrainMind and a super connector in the medical industry. She was a close friend of Leila and has become my advisor.
Jordan Blanco, my friend and former triathlon coach who is as organized as they come and is project managing my case.
Jason Slavich, my brother and healthcare veteran who has spent most of his career at Blue Shield. He is helping collect all of the data on Ursula.
A famous physical-scientist who is also a wound care expert who is helping guide my clinical decisions and helping us all think outside the box.
Mark Walker, my partner in everything, including this. In the daily grind and realities of managing Ursula.
Henry Bear, the therapy dog
And me, the patient!
The Strategic Plan
As long as I can remember in my Ursula journey, I’ve been crawling the neighborhood block-to-block. I come up to an intersection, ask for advice, and decide to turn left or turn right. About three months later, after my next MRI, I do the same again. We’ve been playing tumor whack-a-mole and I have no foresight into the route I am taking or where the destination is.
For the first time in 10 years, I now have a three-part strategic plan:
Phase 1 - Shrink tumors
Mark and I are driving this phase with a chemotherapy called Doxil being the frontrunner. Last week, I went back on IV Doxil and we are exploring a treatment called Chemoembolization that delivers a compound of Doxil directly to the tumors via the veins. The result is 10x the potency but only delivered locally. This was developed for Desmoids in Israeli and MSK in NYC has done this with a handful of Desmoid patients as well. We are in discussions with both teams of doctors.
Phase 2 - Wound closure
Diana and our physical-scientist are pulling together a national team of dermatologists, burn specialists, plastic surgeons, and more to develop a closure plan once my back is flat again.
Phase 3 - Ongoing suppression
It’s clear that Ursula is not going to go quietly and we need a systemic treatment option as Doxil has a lifetime limit. We’re considering wild ideas like gene therapy and mRNA vaccine-type technologies. To help guide us, we are collecting as much sequencing data on Ursula as possible and are planning a “hackathon” with the Children’s Tumor Foundation this summer, bringing together doctors and researchers to help “solve my case”.
The systems to support the process
Teams require communication and coordination, so with my new pod, we’ve set up some light infrastructure. We have a weekly standup. Everything is managed in a Notion workspace, and we are on Slack. All of my medical records live in a Dropbox folder, which I can easily share with any doctor or researcher around the world.
What next?
With my new team and our new plan we are aiming for clarity not consensus. I am no longer trying to triage between doctors and institutions every 3 months, trying to get alignment on the most conservative path forward. No longer are we only treating the disease; we are treating the whole person. Me. And with that I can finally breathe.
I am optimistic that with this approach, the promise of precision and personalized medicine will finally come to fruition. And once we understand Ursula on a molecular level, we’ll be able to find a treatment to help her on her way 👋.
Thank you to Jackie Bona for coming up with the fun name for this post, and Jeanette Mellinger and Pete Kane for providing editing support :)
Yes.......yes. Lewis will help.
Very inspiring and empowering to how you’re leading the charge, Vanessa. This is amazing.