Transitional Cell Carcinoma, with lamina propria &

Transitional Cell Carcinoma, with lamina propria & lymph node spread.  Post chemo scans & surgical pathology clean. Indiana pouch.

I was 52 when diagnosed, and initially thought my bleeding was related to the Change.  When I realized it was occurring only when I urinated, I finally got my GYN to refer me to a urologist who scoped me and discovered the tumor, and referred me to a surgeon at Memorial.  My surgeon performed the TURB about two weeks later and discovered the spread to the lamina propria.  She told me I would have to lose my bladder.  The subsequent CT-scan showed lymph node spread so I was suddenly a chemo candidate, instead of the surgery I was preparing myself for.  I had what I later discovered was six months of state of the art chemo.  As part of a protocol, I had 5 administrations of doxirubicin and gemcitobine over 10 weeks, then 12 weeks of paclitaxel, cisplatin and ifosamide, taken every three weeks over three days.  Between cycles I had to self inject with neupogen to boost my white counts, and also drink a dose of mesna the evenings of the chemo to protect my kidneys.  There was also aggressive managment of side effects so that I never vomited and only felt intermittent nausea, but lost my hair and had mouth sores, etc.  The final post-chemo CT scans showed no lymphadenopathy.  On 8/8/00 I had the cystectomy [with Indiana pouch construction], a total hysterectomy and lymph node dissection.  The surgical pathology was absolutely clean!  My recovery was good, except for the opening of much of the incision when they removed the staples.  That was scary!  It closed on its own in several weeks as they said it would,  but I had kept expecting everything to fall out when I stood up.  It didn’t, but it was a trip being able to look inside my skin.

My husband and daughter came to every doctor’s appointment with me to ask questions and help clarify things.  I know I missed a lot of information and they were there to hear everything.  They also came to be with me at all my chemo sessions, and sat through 10 anxious hours of surgery as well.  I got through it all with a lot of reading, visualization, reike, the incredible daily help and support of my family and a wide email support network, the prayers of a lot of people, and the use of self hypnosis healing and music tapes, both during chemo and also in the recovery room. Humor was also extremely helpful. I have learned a lot on this journey and have many helpful hints for fellow bladder cancer travelers!

Before my surgery I had asked my email circle for suggestions for the design of a ritual to mark and celebrate the last time I would pee like a regular person.  I knew I had a very loving email circle, but I also discovered they were very very weird!  Rituals are by their very nature secret, so let the story rest there.  

Update:  1/29/06
Last month was 6th anniversary of my diagnosis.  My pouch is now more than five years old; I put a birthday candle in a catheter to celebrate.  It sleeps through the night, does not talk in complete sentences, but does make its needs known.  I have had clean scans since the end of treatment in 2000, and plan to have many more.  I have cathed in planes, trains and automobiles; I have even used urinals in men’s rooms– what a life!