Not the only one

I am not the only mPRCC case. It is quite unusual, but I do communicate a little with others in the same boat. Often they seem focused on technical terms and acronyms while searching for THE answer. We all have different ways of dealing with the immediate and continuous losses as cancer steals the lives we used to have. My own narrow viewing often fails to notice the new and different life evolving around me. The possibility of dying and suffering is always over my shoulder, but this is just not all bad. The profound gratitude for my life to date balances the grief and heartache.

Within the diagnosis of PRCC are several variants. Mine is not hereditary. I get other terms for other colors of this deadly, to date incurable, PRCC. Mine I like to think of as a quirky curveball kind of PRCC. I have seen the term sporadic in a few references, but the narrow field of study is still missing exact parameters. I received a letter that asked if my type is sporadic and here is my hopefully compassionate response:

There seems to be nothing sporadic about my mPRCC, but then I really do not know what sporadic means in this context. I have chosen to focus more on relationships with wife, daughter, family and good friends. I remain amazed at the depth and quality I get to experience with those closest to me. It seems each morning I awake with a small box of energy and so I am very selective in allocating and I consciously choose giving and receiving in those relationships.

My search for treatment began with Mayo Clinic right here in my own backyard. They misdiagnosed and said I probably had 18mos - 2yrs. 2nd opinion was with a supposed expert PRCC pathologist at UofAz Med Center. I went on Tarceva April 2009 and saw what I guess is very slow (but steady) growth. The 9cm tumor on my kidney was a coin flip about cutting out. Still have it.

Soon after I began my own research to find work being done on this exact type of cell. XL880 seemed effective for hereditary but not my type and I was too late anyway. As I continued my search for expertise, all roads eventually led to NIH and here I am, 22 months since that first revealing scan. I believe that NIH has more experience on exactly mPRCC than any where else in the world. The fact that insurance companies are not manipulating treatment at NIH/NCI gives even more credibility. Consciously I decided to trust them on technical issues and focus more on my own areas of expertise - living and enjoying every little bit of life I can notice.

Maybe the hardest part of the whole experience has been watching my caregiver, my wife, go through just as much pain and loss and fear and personal horror. I have watched her age 5 or 6 years in the past two. I know she tries to protect me from how hard she is hit and I try to protect her from how hard I am hit. We always end up in each others arms getting real and crying for a few minutes and then we are good for 2 or 3 weeks.

Writing this blog has always been cathartic, and so is writing back to people in the same boat. Emailing or blogging about what this is like for me are similar efforts to me, so todays blog has some of both. It helps me and hopefully others as well. Beyond that I can send some prayers your way.
Bill