Year Ago Today

I guess I have one more question (at least) for both Rick and Gene (Ginger): Did you consider the indiana pouch at all?

Rick and Ginger: Thank you for the input. I don't know where else I would go to give me this much background information going into this. By the way, is the ilial conduit always on the right?

Rick,

Glad to hear all is well with you, and your anniversary of still having a good life is in order.. like you my husband has benefited from this site from day of diagnosis til now 6 months past surgery. For Jeff we had Stage 3 T-2 no chemo no radiation. some of us luck out and get by without it. like you Rah, Gene has the bag, but we go on, and live as we once did.... Ginger

Jeff F.
First off, good luck to you on your Journey.
I had: T3a N0 MX

My bladder had two Diverticulums (Picture a Mickey Mouse balloon as my bladder instead of the normal shape balloon. The ears are similar to the diverticulums.)
Inside both of the Diverticulums were some tumors. The Diverticulums are quite a bit thinner then the normal bladder wall.
After they removed the bladder, they found cells on the outside of the diverticulum. The cells were still on my bladder and they did not find any in any nodes.
Since they found cells outside the bladder, they suggested I get Chemo.

My surgery lasted ten hours. I went into surgery with the plan for a Neo Bladder. The surgeon could not get the part of the intestine he was using for the Neo Bladder to stretch around my large colon. So he had to bag that idea (pun intended) and go to plan B. He had to reconnect my intestines and cut out a different section to make my Ileal Conduit Stormo. Since I was out cold it could have lasted six hours or ten hours, I couldn’t tell. My wife and family however, felt it was an eternity.

I was out of the hospital in six days. I was back to work at the six week mark.
The exterior bag was the way to go for me. I have had no problems.
I don’t have wet pants or beds.
I sleep all night while a tube is connected from the bag on me to a larger bag next to my bed.
I know when I have to “Leak my Bag”.
The pouch lasts me a week. The change takes about 10-15 minutes total for me.
The only problem is that the Stormo is on my belt line. When I wear a belt it sometimes unseals the bag from the pouch (the seal of the bag to the pouch is kind of like a Tupperware bowl and lid connection). Now I just wear suspenders.

This is my experience. As they say, “Result may vary”.

Take Care
Rick

Rick, I have read all your posts, and am getting ready for my RC. I wondered, were your tumors muscle invasive? I have muscle invasive T2 in one area. My doctor indicated I would not be a candidate for chemo. Is there a particular reason you did chemo? Thanks and best of luck. Also, how long was your surgery and hospital time and back to work? I think I am going for the exterior bag because it looks less complicated and I have to shorten my down time as much as I can. Thanks again.

Jeff

What a year.
A year ago today the Urologist looked inside my bladder and said there were tumors all over the place.

A few minutes later, my wife and I were sitting in his office. The third time he used the word "Tumor", my wife asked, "Does that mean Cancer?"
With his words, "Yes, Rick has bladder cancer"; our life has been changed.

I went through the scary unknown of "How Bad" the cancer really is.
I went through the plan and surgery for a NeoBladder; that turned out to be an Ileal Conduit Stormo.
I went through the recovery of being opened-up, intestines reorganized; prostrate removed; and a "red tongue" sticking out my abdomen.
I went through all this with my family being a part of the whole recovery.
My wife and I became skilled on changing the pouch so that it last a whole week with out any leaks.

After the physical healing was done came the twelve weeks of poison. I survived the three month of flu like state as I complete my Chemotherapy protocol.

Now I am back to Normal. Other then the bag on my belly, I feel the same as I did two years ago.

Looking back on the year, I must admit, most of the changes were for the good. I truly know how much I was and still am loved. I know the power or prayer in its comforting and healing ways.

Thanks to those at this Café for all of the words you wrote, information you provide, and love you project. The Journey would not have been the same with out the Web Café.

Best to all
Rick