So, hi.  🙂
My name is April. My partner found your site a week or so ago while researching online, trying to find anything to enlighten the two of us about dealing with a neo-bladder.
A few months ago, when I finally had a good job with insurance benefits, I finally went to see a urologist about the problems I’d been having off and on for about 3 or 4 years. He found what he said was likely a benign tumor embedded in the wall of my bladder. Parts of it were calcified, he said, and although it likely was not cancerous it should come out. So, surgery was scheduled and a month or so later I went in as an out patient for a simple cysto procedure. Not long into the procedure the doctor realized the tumor was more complex and much bigger than he originally thought, but he kept going anyway, made a series of very bad judgment calls, and I almost died.
Thanks to my partner, Jana, I survived. She was with me immediately after surgery in ICU when I consequently started having seizures, at which time she ran to get a nurse.
I was in ICU, unconscious, for 4 days.
When I finally came to, I was moved to another room and kept for another 4 days, until I was strong enough to leave. (Had to get my sodium and potassium levels up, get my white cell count straight, etc.)
Another doctor, Dr. Fort, who was called in to fix what the first doctor screwed up, came to see me and explained to Jana and I that the tumor was in fact cancerous, and that it was connected to a much greater mass in my uterus, which was also likely cancerous. He advised another surgery, which would include a complete hysterectomy, a urostomy and the construction of a neo-bladder from part of the small intestine.
He also said the tumor was a stage 4a sarcoma, that there was a chance that I wouldn’t survive this, even with treatment.
Like anyone else, any and all of you here I’d wager to say, we were shocked…devestated, really. For a few weeks I couldn’t even get my head around it, I was still hurting so bad, still so doped up from what had just happened. But I went to see Dr. Fort, as he suggested, talked to him, asked dozens of questions, but never really stopped feeling like I was in the Twilight Zone.
When I felt confident that there really was nothing left to talk about, we set a date for the next surgery.

On October 16, 2006, I had a complete hysterectomy, a urostomy, and a neo-bladder put together for me. I won’t bother repeating any more of what is a well known part of all this, regardless of exact details: hospital stays after major surgery are a nightmare of pain and discomfort, no matter how glad you are to be alive.

But…such harshness has a way of illuminating the mundane blessings of everyday life, all that we so easily take for granted. Here I was in the midst of the hardest, scariest time of life, so tremendously grateful to be alive.

I’ve been home for awhile now. Still taking pain meds (which I hate.) Still not digesting properly (i.e. nothing much happening without laxatives yet.) The most annoying thing happening right now is a bit of leakage from the stoma, where this temporary catheter travels from the bladder into a leg bag, which will be removed next week.

The good news is all the cancer was removed during the surgery, so I don’t need any further treatments (as of now.) All margins were clear, no spreading…and the larger mass (the size of a grape fruit) in my uterus was not cancerous.

So, now I’m just trying to get used to it all, I guess. Some days are harder than others. Some days I’m so angry and scared, and pretty disgusted with myself for it, because this could have been so much worse. Other days, I feel like I’ve felt for most of my life: invincible and sassy, your basic redheaded smartass.  😉

I was born with cancer, retinoblastoma–cancer of the eye. My right eye was removed when I was 8 months old. The cancer traveled to my left eye and was found when I was 14 months old, treated, and for the next twenty some odd years, I had annual check-ups at St. Jude’s in Memphis.

Dr. Fort said the radiation treatments I received in 1971 were likely what caused this latest cancer. He’s probably right. I always wondered if it would come back, wondered if I’d be able to beat it a third time.
Looks like I have, so far.

Anyway.
It’s good to find such a terrific group of people and such a great source of information. This seems like a terrific community of survivors. Hope it’s okay if I hangout here for awhile.  😎

And please, if there’s any advice, any thoughts you’d care to share…I certainly welcome them.

Until we read again…

Peace & kindest regards   [size=12][/size]