From Birth to Beyond: Mary’s Story
The Day I Lost My Bladder—but Kept My Life
Receiving the formal diagnosis of advanced, muscle-invasive Squamous Cell Carcinoma of the bladder shattered my world. The path ahead was suddenly urgent, and the surgery I faced was not just another procedure—it was a turning point that would change the course of my life forever. The plan: remove the cancer, surrounding organs, and my bladder entirely. In an instant, I was confronted with a question most people never have to face: Where does my urine go now? This is the story of what followed—of survival, resilience, and redefining what it means to move forward.
On Jan 22, 2025, I underwent a Radical Cystectomy / Ileal Conduit surgery – an operation so extensive it would change my life forever. To survive, my body would need a new way to expel urine. A section of my small intestine was cut, attached to my ureters, and repurposed as a new channel for urine to exit my body. They created a stoma, which is a permanent opening in my abdomen, where urine would now flow into a permanent urostomy bag on the outside of my body. Before the surgery, my new wound nurse provided me with the external bag and equipment to practice with. They even marked the spot where the stoma and bag would live on my abdomen. This would be an entirely new life. And the magnitude of the surgery would be overwhelming, affecting nearly every part of my core.
On the day of surgery, I checked in at 5:00 AM. I was in the operating room by 7:30 AM and was finally in recovery at 5:00 PM. It was an 8.5-hour surgery. A few hours were simply dedicated to moving around and cleaning out my scar tissue from past surgeries (which is common for those of us with Spina Bifida).
During surgery, the following was removed:
- My Bladder
- My Urethra
- My Appendix
- One ovary
- Both fallopian tubes
- About 20 Lymph nodes
- The mesh from the Bladder Augmentation around my ureters
What followed was a profound shift: I had to come to terms with the fact that my anatomy and my daily life would never be the same. Every step of this journey required courage and adaptation beyond anything I’d ever imagined.
As if that wasn’t bad enough, apparently I created a set of rules for my hospital room… yes, rules. I presented this to my parents and husband by having them stand at attention at the end of the bed as I read the list to them:
- Speak up – I can’t hear.
- Don’t make me repeat myself.
- Don’t ask me to speak up – I’m too weak.
- Don’t speak to the doctors on my behalf.
I don’t remember this AT ALL. But my husband took the note to show me once we returned home – it was definitely something to laugh about later. And we framed the list – a sign that we ALL survived this absurdity.
I expected a tough recovery, but nothing could have prepared me for the reality: this operation forced me to rebuild my body and relearn how to exist within it. I lost nearly all leg mobility and had to claw my way back to even the simplest movements—bending, sitting up, standing, and walking. What once was effortless now required extraordinary effort. Getting in and out of a chair or taking a few steps with a walker became Herculean feats. The pain—especially getting in and out of bed—was blinding, sometimes reducing me to tears and screams. Swelling made every movement feel impossible. Two months after surgery, walking a single New York City block took an hour with a walker and my husband by my side. But slowly, step by step, I reclaimed my strength and relearned to walk again.
What made movement even harder was the 40 pounds of water weight and swelling I gained overnight from the surgery and the constant IV fluids to support my gastrointestinal system, which had slowed down completely. And this was despite 12 days without food. The swelling was so severe, especially in my thighs, that my legs looked like tree trunks, making it nearly impossible to move or walk. When it was time to go home, none of my shoes fit over my swollen feet. I left the hospital and ventured into a cab on the city streets, wearing several pairs of heavy socks instead of shoes in the middle of winter.
A few days after the surgery, I still had not gone #2 and was unable to keep fluids down without vomiting. My worst nightmare transpired; while awake, they had to place a Nasogastric (NG) tube down my nose, which goes down the throat and into the stomach to remove contents. NG tubes are terrifying. This is my second NG tube in my life. One was added after my Bladder Augmentation surgery in 2007. I never got over the PTSD from that. Both experiences were the same – like sword swallowing. Horrifying.
Inside the hospital, time lost all meaning—a relentless cycle of pain, fear, and uncertainty. Every ninety minutes, a fresh wave of agony or despair washed over me, punctuated only by the rare, fleeting moment of calm before the next ordeal. Powerless against the constant unknown, I learned that when visiting hours ended and the nights stretched on, true loneliness set in. This is the harsh reality endured by so many patients in the fight of their lives.
While dealing with the complications and fear, I was simultaneously tasked to learn how to replace my bag that now collected my urine. Urostomy bags have to be replaced at least twice a week. My physical and mental state was so altered, though, without questioning it, my husband took on the full responsibility of learning how to change it for me until I could begin to make sense of my own thoughts. He was a godsend. And he still leads the effort to help me change the bag twice a week to this day.
This new process also required trying new equipment, and there were some hiccups. I developed huge, bloody blisters that took over my right thigh from an allergic reaction to the medical tape used to attach the new urostomy bag to it. This took a couple of weeks of special medicine to heal. And I could clearly never use that type of adhesive again.
During all this, the NG tube began working and was removing bile from my stomach. Once we felt my stomach had fully decompressed, it was taken out (which is nowhere near the horrible experience of it going in), and I could hold down liquids again, and then progressed to a soft diet. However, I wasn’t out of the woods yet. In fact, an everyday condition we couldn’t get control over happened for over two months, and it drastically affected my way of life – explosive diarrhea. And about every two hours. The moment the team cleaned me up, it felt like I needed to go again. This condition persisted for over two months while at home until we found a suitable medicine to help. To this day, we’re still having issues, but to a lesser degree.
In the end, I endured 11 days in the hospital and fought for nearly four months to reclaim my life and independence.
The biopsy results from the surgery returned after I left the hospital. All the cancer from the bladder was removed, but the cancer had spread. It was found in ONE lymph node, which thankfully had also been removed during surgery. Additionally, the biopsy revealed that I did NOT have Squamous Cell Carcinoma of the Bladder. Instead, I had Urothelial Carcinoma of the Bladder with Squamous Cell Differentiation. This is a type of bladder cancer in which the cancerous urothelial cells (which line the bladder) begin to develop into squamous cells. This is a variation of the more common Urothelial Carcinoma, often in high-grade and advanced-stage tumors, like mine. While it differs from pure Squamous Cell Carcinoma, it may be more aggressive and have a poorer prognosis than Urothelial Carcinoma without this feature.
With the biopsy results in and the surgery over, it was now time to put this experience behind me officially. My next step was a PET scan and an MRI. These would determine whether the cancer had spread beyond the single lymph node. Lymph nodes are the carriers in the bloodstream. So, once cancer has hit there, it can be challenging to keep it from spreading.
So, was there more cancer?
Find out in my next blog!
And continue voting for me in the National Fab Over 40 competition, where my goal is to raise awareness about Spina Bifida and Bladder Cancer.
I’ve almost made it to the Quarter Finals! So – vote at this link every day for FREE: https://fabover40.org/2025/mary-67c6
Those of us affected by Spina Bifida and Cancer thank you.
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Mary Dobson
Individual Living with Spina Bifida