When Lifesaving Information Comes Too Late
Content Note: This article mentions abuse. If you or a loved one are struggling, consider reading our mental health resources page.
Since I was a baby boy, I remember my Mom being a tough and unwavering warrior. Everyone knew not to mess with Susan! Being the eldest of 6 kids in the Baby Boomer generation, she was responsible, no-nonsense, and a bit over-protective from youth. She could always solve my problems or at least help me assuage my fears.
I was shocked to see how bladder cancer reduced my Mom to a constant state of fear, panic, and hopelessness. It was out of character for her, especially after her myriad health scares from before. I just couldn't figure out why bladder cancer was different for her.
Humble, horrible beginnings
Mom was emotionally, physically, and sexually abused from childhood.
Being the eldest, she was held responsible for her younger siblings' misdeeds and would receive the punishment for it. My Mom endured endless slaps, punches, broken bones, a sullied reputation, and shattered trust from those who were supposed to love and protect her.
Because Mom was always one to stand up for what was right, she stood up for herself against her abusers. This fact was used against her to make her the target of vitriol in my family. An agreement reality of Susan being "a troublesome bitch" was invented, and her siblings, cousins, certain aunts and uncles, and neighbors were all enrolled in the saga. Her life experience was being alone and backed up against a wall.
Once Mom and I reinvented our relationship, she was able to share many unimaginable sufferings with me. I am both grateful and tormented.
New gut punches
Mom started getting urinary symptoms in 2019 that gave way to light bleeding in 2020. By June, her bleeding got so heavy that Mom ended up in the ER, where she finally received a scan that revealed a bladder tumor.
From that fateful moment, we were tossed onto a nightmare of a rollercoaster. Every cystoscopy, TURBT, and therapeutic instillation was a solo battle.
The first TURBT I wrote about was traumatic for all of us, having to wave goodbye as she walked into the hospital and disappeared around a corner. I couldn't believe the universe would conspire against my Mom so cruelly after the difficult life she lived.
An ontological hint
We share an intuition that can sometimes be a little spooky! Mom had always had a mysticism about her. She physically predicted the 1989 Loma Prieta Earthquake in the San Francisco Bay Area. It was not uncommon for her to think of someone or something and have that person call unexpectedly or that thing she imagined would occur.
The intuition that something was off with my Mom began to creep into my heart. I knew something was off. I just couldn't put my finger on it.
Mom was always dressed so beautifully, even if it was just for a doctor's appointment or a run to the store. She always looked and smelled awesome! It was an integral aspect of her being.
Mom was terrified of losing her hair to chemotherapy. This was no secret! She was also pretty dead-set against radical cystectomy from the start.
I understood that fear and concern, but it was just so strong. I could tell she was holding onto something, but what? Was it just simple vanity?
As Mom began preparing for the next phase of her bladder cancer battle, she made an appointment with her regular doctor. By now, we were near the end of December 2020, and chemotherapy was to begin in January 2021. Mom wanted to get all her regular medicines and everything in order so she could concentrate on relaxing and healing.
At that appointment, which Mom attended alone due to pandemic restrictions, she updated her doctor on her bladder cancer battle. The following is what she relayed to me:
"Susan, why don't you want to take your bladder out?" he asked Mom.
"I don't want to walk around with tubes hanging out of my dresses or pants; I want to wear regular clothes, and I don't want people to stare or point at me or even feel bad or weird!" Mom admitted she teared up as they spoke.
"Susan, which of my patients in the waiting room don't have their bladders?" he asked her.
She was stumped. "What do you mean?"
"When you were in the waiting room, which patients did you see without a bladder?"
"I don't know."
"Exactly. There was more than one, and you couldn't tell, could you?"
Mom was hopeful for the first time in months when she got home from that appointment.
"Dr. Khan took the time to tell me about the different options for bladder replacement. I didn't know they could put a bag right on my stomach. They can even create a new bladder for me!"
I felt so stupid. How could I have missed that my Mom had not been educated on urinary diversion? Furthermore, how could her oncologists and urologists fail to take the time to explain this to her? I could have made up the difference had I realized, but my focus was elsewhere in her battle.
"I'm feeling a bit better, Son. I don't want to lose my bladder, but maybe if I have to, at least I have options."
I'm certain her story would have unfolded differently had these options been presented to her earlier.
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