Something Old Yet Something New

After I was diagnosed with Stage II bladder cancer requiring a radical cystectomy I talked with the doctors about the various diversions available to me. Based on my situation I was fortunate enough to have my choice of wonderful options. The bag - always fashionable at a post-cancer soiree. The Indiana Pouch for those who make a habit of wearing tight fitting black formal numbers. And the “neobladder” for those who don’t like worrying about traveling with a lot of accessories. I listened to all the descriptions and nodded knowingly as they talked through them. But when the doctors explained what a neobladder was I was dumbfounded. What sort of witchcraft were they talking about?

A "fake" bladder?

Creating a “fake” bladder from my intestines? Hooking it all back up inside me and everything would work almost like before?

Nuh uhh.

All I could think about was when they put a baboon heart in a baby back in the early 1980s.

When they described the process I was thankful I lived in a time when that type of stuff was possible. Medicine is truly wonderful. Science writer and inventor Arthur C. Clarke is famous for many, many things, one of which was saying, "Any sufficiently advanced technology is indistinguishable from magic."That’s what I thought when I heard about the neobladder. It was magic!

Then I found out it was a procedure pioneered in the late 1970s!

What I thought was cutting edge medicine was almost 50 years old! I was no longer a medical miracle. I was just another in a long line of neobladder recipients.

I wasn’t special. (Sad trombone … whaa…whaaaaaa…)

But what was surprising to me was even with a 50 year-old vintage, neobladders weren’t that well known to the general public, and in my area of the country, not even that well known to the medical community.

You will be a teacher

I’ve been sporting my neo for about five years now and I’ve had a few things pop up now and then related to my kidneys, the neobladder, my back and legs resulting from cancer. As anyone who has been diagnosed with cancer will tell you, while you may never have cancer again, you will definitely continue to have cancer-related issues. Each time I went to the doctor for those issues, I was amazed how much explaining and educating I had to do related to my neobladder.

I once thought I had a kidney infection and went to the emergency room at a hospital (the one that does my annual CT scans for my - wait for it - bladder cancer check ups). They checked my urine for infection. I told them about neobladder. My urine came back with white blood cells in it - a sign of an infection. They gave me antibiotics. When I told my urologist who did the neobladder during my next check up with him, he questioned whether I really had an infection at all, because with a neobladder, I will have white blood cells in my urine pretty much all the time. You’d think the first doctor would have known that.

Explaining the entire neobladder procedure

Another time, I had an issue with voiding (I thought my volume of urine was too low) so I used a catheter to check if I was completely voiding. I was. But the next time went to the bathroom there was a bit of blood in the urine. I was freaked out as blood in the urine is the same symptom that started my cancer journey. I immediately popped out to my local quick-lube medical urgent care stop where I had to explain the entire neobladder procedure to the doctor. After which she said… and I kid you not… “Huh. Amazing.”

I was again dumbfounded. A fairly young doctor was surprised by a 50 year-old medical procedure!

FYI - just to close the loop on this … because I know you're wondering … the reason for the blood in my urine was a metal staple had slipped down into my urethra from my original surgery two years earlier and I had pushed on it when I put in the catheter causing a slight amount of bleeding.

So - #Protip:If you’re in the same club as me (neos rule!) you will run into a few doctors and other medical professionals who won’t have a clue about your neobladder or the things that having one entails. I urge you to learn a lot. Know your disease and be ready to be a bus driver and take some folks to school.

Side note…

The one person who did have the 411 on neos was a podiatrist. I guess he did some sort of surgery rotation and had to go through one as an observer. He said he remembered his legs killing him because the surgery was so long and he had to stand the whole time. Go figure.

But now you know. Go forth and educate!

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