Start of the Roller Coaster

Hello Family & Friends! I’m starting this blog as a way to keep you informed about what is happening as I deal with the recent discovery of bladder cancer. I also want to use this as a way to share thoughts, feelings, and fears about what the ride is like. My hope is that you’ll visit this site as you want, maybe learn something about this type of cancer, and find incentive to care the best care of yourselves and those to you care about.

I still welcome e-mails and phone calls if you have questions or want to respond to anything you see here.

Just to recap how this disease came to be found in me:

Mid-August – I notice blood in my urine. I attributed it to the beets I’d had for dinner the night before. The color disappeared & I thought that was over.

Late-August – another episode of blood in urine … hmmm, strange, maybe it will go away.

Sept 3rd – third episode, definitely not normal; I called my doc & got it for exam & testing. My doc referred me to a local urologist for further testing & exam.

Sept 8th – This was the day it because clear that I have cancer. CT scan, x rays, and further exams by Dr. Peckler, urologist resulted in diagnosis of tumors in the bladder. Surgery was recommended as the next step to remove the tumors & get samples for biopsy. Some pretty involved coordination also occurred with the Puget Sound Blood Center in Seattle to design a course of treatment to counteract my Hemophilia B (Factor 9). Two days later, 3 boxes were delivered for home infusion of artificial Factor 9. I had just finished doing this for my back surgery in July, so everyone felt comfortable with the same setup. Guess what the cost is for 120 vials of Factor 9? Over $110,000!

Sept 15th – surgery at Providence St. Peter in Olympia. All went as expected, three tumors removed and biopsy samples taken from several sites. Home from hospital on September 16th with catheter (I don’t recommended for anyone, but manageable).

Sept 19th - Another fateful day. Daren & I met with Dr. Peckler. He had the pathology report & said that I have a very rare & aggressive type of bladder cancer called neuroendocrin tumors of the bladder. Mine is the only case he had seen in 27 years of practice. He referred me to specialists at Virginia Mason in Seattle, and said that we I should expect is chemotherapy and bladder removal surgery.

Upon returning home with this news, I called my older brother, Paul, to inform him of what was happening and ask that he called the immediate family. I also called our daughters; Kehlen, Pullman and Lauril, in San Francisco.


Finding out that I had cancer (see below) was a total shock and unreal. I feel fine physically, especially after getting the catheter out. My energy level is lower than normal, but I attributed that to healing up from surgery & not sleeping well. Because of the language used to describe what I have (‘very rare, very aggressive’) I start thinking about how to wrap up my affairs, a short list of wants & needs, who to give things to when I’m gone, and where to have my ashes spread.

Word spread among family on the West & East coasts, friends and co-workers. The outpouring of concern, love and support is both overwhelming and heart wrenching. I don’t consider myself a particularly “special” person – the one lesson from bible school that I absorbed was the Golden Rule – being honest, working hard, and treating people fairly have been the guideposts for my journey. I am blessed with wonderful and caring family, friends and colleagues, and will never forget your support as I deal with this burden called bladder cancer.

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For more information on bladder cancer, risk factors, statistics and treatment, a good place to start is the National Cancer Institute web site at: http://www.cancer.gov/cancertopics/wyntk/bladder/page10