Hello all my name is Klynn, my husband John has recurring bladder cancer, in 2004 he had a total cysectomy. He has a neobladder he did well with the surgury, had leak 2 weeks post surgury that caused a sisk to form blocking his bowel and had to have a 2nd surgury to reroute the bowel, after a month in the hospital he came home. He rebounded well and was back to work in 5 months living a happy almost normal life. Fast forward to January of 2006..wakes up New Years morning with blood in his urine. we make an appointment with urologist and they treat him for a UTI. This goes on for 3 months, spend a week in the hospital, 2 ct scans a cystogram, a white blood count of 35thousand, they do other tests say he has herpies of the windpipe and send him home with valtrex. A week later back to the dr and his white count is now 46thousand. Dr says maybe he has luekemia. I call Mayo clinic we spend three days doing test and they find a large pelvic mass. The mass has caused his kidney to drain slow so they put in a nephrostomy tube by the way since 2004 his left kidney has shriveled up and is not functioning. The recommend chemo we decide we cant stay in Minnesota so we head back home to northern Illinois.. It is now June I call all around and find the Kellogg Cancer center since they come recommended by a family friend and can also fit us in the quickest. I could not believe how long some of the places wanted us to want to get in. In July john started radiation he did 30 treatments along with a weekly Taxol treatment. This caused his pelvic mass to shrink from 7×4 inches to about 4×2 inches,Thats the good news the bad is that is caused a fistula between the bowel and bladder, whatever he ate came out of his penis. Not good when you are eating cashews I thought I had found a nice high calorie snack that he enjoyed. We can laugh at that now as he had another surgury in September to fix the fistula, they actually cut out the portion of his bowel with the hole in it and disconected his neobladder so that it would heal. He still has the nephrostomy tube as it is the only way for him to pass urine. He recovered well it took a little longer than the original surgury in 2004, he is now doing rounds of carboplatin and gemzar has completed three rounds. He had a ct scan last week and they no longer see the mass.. hopefully 2007 is going to be a better year. Thanks for taking the time to read our story, I have been a lurker for a long long time started reading back in January 2004. I finally registered and would like to thank every on the site for all the great information I know in 2004 it really help us to know what to expect and just knowing that you are not alone…
28January