(This is the original unedited version written for KCCure)

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 letter 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.

So after a life with 3 college degrees, 3 startups, 3 kids, one wife and one IPO, 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”. Basically, clinical trials are “evidence-based” informed guesses about something that might work but probably won’t. But it got worse.  Clinical trials are primarily sponsored by pharmaceutical companies looking to sell into a big market and I had a "rare disease". There are several definitions of “rare disease”, but MY definition is a disease that few people are working to cure or treat. And I could tell that nothing was happening because there was a metric that told me so. “Overall Survival”, the time from initial diagnosis to death, has not increased in a decade for pRCC.

So I first met researchers in the field to create rarekidneycancer.org and co-author a paper. Now I help organize “silicon valley” style events to promote my own vision of how to cure all cancer (mine included). You can help, because interestingly, at its heart, all this fancy stuff still requires the patient to help do 3 straightforward things:

1. Asking your doctor to save your tissue from any operation.
2. Turning that Tissue into usable data
3. Making that data available to the researchers.

And as prepared as I thought I was, I did not realize that each new clinical trial might "use up" one of my tumor samples for analysis (DNA, RNA-seq, methylation, who knows what). So I did not ask my doctor to save lots of tissue at this first step. Please be smarter than me. Make that request.  

If you’d like to learn more about avenues for tissue donation, turning your tissue into data or the avenues for making your data available to researchers, please contact me at bill@rarekidneycancer.org

In closing, I’d like to mention that I’m not above taking inspiration from pop culture.  My second favorite movie, “The Martian,” really sets the tone for me on individual attitude. Replacing "space" with "cancer" it reads:

The Martian: Mark Watney: The other question I get most frequently is. When I was up there stranded by myself, did I think I was gonna die? Yes, absolutely. And that's one you need to know, going in, because it's gonna happen to you. This is cancer. It does not cooperate. At some point everything is going to go south on you. Everything is going to go south and you’re going to say 'This is it. This is how I end.' Now you can either accept that or you can get to work. That’s all it is. You just begin. You do the math, you solve one problem. Then you solve the next one, and then the next and if you solve enough problems you get to come home.

But my very, very favorite movie, Iron Man, sets the tone about working together.  It 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.