Today’s Voice of Kidney Cancer is Bill Paseman. In addition to being a survivor of papillary kidney cancer, he also serves on the KCCure Patient Advisory Board. Read Bill’s story and how he’s trying to use Silicon Valley style events to gather more information about this rare subtype of kidney cancer.
Forty years ago, MIT accepted me to grad school.
I was a “local boy” raised in Texas, working in my teenage years with my father in refineries in the Houston area.
I remember remarking to my Dad “A whole lot of people die early from kidney cancer in this job”.
So I was pleased that MIT’s acceptance had put my life on a track away from the refineries and oil fields.
A track to a desk job where I could count on dying from a heart attack at 68, instead of kidney cancer at 35
After a life with 3 college degrees, 3 startups, 3 kids, one wife and one IPO (initial public offering), my response to a kidney cancer diagnosis was probably atypical.
I didn’t feel scared, I didn’t feel depressed, I didn’t feel hopelessness, I felt really, really stupid.
Here I was. I had made a PERFECT prediction, 40 years out, and STILL, I was blindsided.
Despite that incredible lead time, I felt like I had been given an unannounced test, in an unknown subject, with no chance to prepare whatsoever and the test was tomorrow.
Stupid. Stupid and angry at myself.
But picking up working knowledge of unfamiliar material was not a new task for me.
So taking Mark Watney’s advice given in the last moments of “The Martian”, I just “began”.
I asked my surgeon before the operation, “what sub-type of kidney cancer is it likely to be”? “Clear Cell” he declared. 80% chance.
Well, it wasn’t. It was papillary kidney cancer (pRCC). One out of ten kidney cancers are diagnosed as this.
After the operation, my doctor told me that while clear cell had a recognized SOC (Standard of Care), papillary didn’t. And that in the case where there is no agreed upon course of action for a medical condition, I ought to look into a “clinical trial”. I found that there were very few clinical trials that accepted pRCC patients.
While there are several definitions of “rare disease,” my definition is a disease that few people are working to cure or treat. And overall survival for papillary kidney cancer is still too short.
So I held a meeting with researchers in the field, started rarekidneycancer.org, helped co-author a paper, and (still) help organize “silicon valley” style events to address this.
In closing, I’d like to mention that I’m not above taking inspiration from pop culture. My very, very favorite movie, Iron Man, features an MIT graduate: Tony Stark, who gets his head set straight with comment from a friend who is in the same situation as him, stuck in a cave in Afghanistan, shrapnel working its way into his heart, with people outside ready to kill them both.
Iron Man: Tony Stark: I shouldn’t do anything. They could kill you, they’re gonna kill me, either way, and even if they don’t, I’ll probably be dead in a week.
Yinsen: Then this is a very important week for you, isn’t it?
Have a good week.
To learn more about Bill’s upcoming Silicon Valley style “hack-a-thon” visit http://rarekidneycancer.org/news/2018-kidney-cancer-hackathon
