The Path Forward – Introducing KCCure
This blog began as a caringbridge site. Some of you may remember Chris’s funny opening line – something about being able to ride a bull while crying. In the beginning, it was an effort to keep family and friends updated, but it grew into something much bigger. That change forced us to move from caringbridge to a full-fledged blog. Chris’s writing inspired patients from around the world.
But as our reach grew, we also began to get e-mails from patients asking for help. Chris helped them with his words – I helped them with more practical things, like finding doctors and navigating insurance claims. Some wanted advice on treatments that we had tried or tips on mitigating side effects.
After more than 4 years of navigating the healthcare system, it felt like I’d earned a degree. A masters in what? Navigation? I don’t know the title. I just know that not sharing what we learned felt wasteful.
After Chris died, I couldn’t “find my footing,” so to speak. Straddling my old life as a lobbyist while trying to remain connected to the patient community – everything felt off-balance. Kidney Cancer Chronicles was part of that struggle. What to do with the blog? I learned enough from Chris to know that keeping a blog alive requires content. But that was what Chris did. If I focused on writing every day, I wouldn’t really be focusing on helping patients.
Anyone who knows me knows that “patient” is rarely (#never) used to describe me. The truth, however, is that patience is exactly what I needed. Letting the dust settle from 5 long years of crisis allowed a path to form – and when it did, it was so clear. In fact, I’ve never seen anything so clearly before.
KCCure is a new non-profit organization that I’ve cofounded. Together with Dr. Hans Hammers and Susan Poteat, we’re going to change the face of kidney cancer research. As I said at Chris’s memorial service, my work here is not done. And Kidney Cancer Chronicles is not done – it’s just evolving. For those of you who followed our story and found value in it, please come join us on KCCure.org. The work of curing kidney cancer has only just begun.