Long time, no write . . .

It has been just about a year since a specific dianosis was reached - metastasized papillary renal cell carcinoma, PRCC. I am not sure it is the pill form chemo drug Tarceva, or what, but the largest growth of any of my tumors is about one centimeter. I still feel nothing from the kidney tumor, but my breathing is impacted some by the nodules in my lungs. I started the medicine last March, but the centimeter of growth is measured frome the first CT scan January 2009.

The year marks a turning point for how I think about and feel about having this unusual and "incurable" form of cancer. What does my doctor really know? What does he not know? Early on, in some degree of shock, Jacki and I both took him at his word to be a a ntion wide expert in PRCC. Maybe he is. I know that he did not follow up on one drug trial I pointed him toward a year ago. In his practice, his patient times were adjusted from 20 min to 15 min. I know he did not follow up on a promised graph of tumor change over the months.

We have concluded that he may well be an "expert" in his field, but he still knows very little about inhibiting papillary cell growth. Nobody knows much about it. I want to know what they know AND what they do not know!!! I have finally defined my necessary role as Project Manager of my own treatment.

So, you helped me find a listserve of fellow PRCC patients. Through them I learned of a number of oncologists around the country who are or have worked with PRCC. Of those, much of the small amout of research on PRCC is done at the National Institute of Health. Their department of Cancer studies is deep into papillary study and trial interventions.

I must point out to our conservative party of NO! citizens that this place is an example of socialized healthcare. They are mostly government funded. No sanctified capitalistic pharmaceutical company has nor will invest much in research about PRCC nor most other unusual forms of cancer. No money in it.

I have cultivated an informed relationship with the head nurse of the department and I now have the cell number of one of the doctors. They want me to go to them in Bethesda, Maryland for a complete physical workup, perhaps to the genetic level. Then they will layout the drug trial pros and cons (additional side effects?) to Jacki and me to help us decide to be or not to be part of the trial. This stage 2drug trial uses my current drug, Tarceva, combined with another drug that kind of hits my cancer from a different angle. Sort of a double whammy approach that lets me be a bit more hopeful.

The doc I have spoken with said the combination looks very promising. In April I go to Bethesda for a few days of evaluation. They pay airfare and hotel but we pay Jacki's air. I am excited. If Jacki and I decide to do the trial it will require more trips to Bethesda.

That uplifting hopeful development the balance out with feeling angry a few times over the next few days. During a brisk long frustrated walk one night I had an overwhelming urge to throw my cell phone though a couple plate glass windows and then run like a scared rabbit. Then I realized my phone would be evidence inside the plate glass window -- uh ohh. I am typically better at stuffing anger than appropriately expressing this very human response to pain. Of course, stuffing anger squeezes out rage of coagulates inside into depression So vehemently talking about it and just thinking of throwing my phone or slashing my doctor's tires is progress for me and a bit more honest than "oh, I'm a little disappointed."

The anger was about yet another quality of life loss. We had to cancel a first time to Hawaii long planned trip. No biking, no skiing, no job, less freedom, spongy brain, cloudy thinking, memory loss. Cadillac problems all, but cancer is a thief and I am pissed off enough to fight.

Last night I became aware that in talking with others and particularly Jacki, I was focusing on some side benefits of going to Bethesda. For example I love the possibility of walking the monument filled Capitol Mall in nearby DC. I get choked up about getting to visit The Wall. Long ago I had an overwhelming experience visiting Philadelphia and the Liberty Bell and Independence Hall. I want it again, perhaps 10 fold in DC.

What I was not talking about is the underbelly of doing the trial. What if it does not work? How bad are the side effects? How much will I be away from friends and family? Even if I still die from PRCC, will I at least have helped the next guy? However, regardless of those fears, at least I will feel like I am doing something! Something please!!

Thanks for listening!
Bill