When Intravesical Chemotherapy Takes Your Breath Away

The end of March 2021 began a whirlwind that consumed my life. I didn't realize at the time, but we were entering brand new territory in Mom's battle. While I was busy healing from my COVID-19 vaccine, Mom was preparing for Easter and healing through the final week of her intravesical chemotherapy.

One of her side effects threw us for a loop.

A miserable mystery

I previously mentioned Mom experienced a disturbing side effect about halfway through her chemo instillations. While she was using the restroom to urinate, the flow would stop and she would clog up. She felt the immense pressure of having to pee, but only drops came out due to something "stuck" in her urethra.

For a couple of weeks, Mom ended up passing various-sized clots or burnt tissue from inside her bladder. To address this, she would instinctually press her lower belly with her hands to apply pressure to her bladder. Soon, the pressure would cause the lodged tissue to pass, and a whoosh sound would be followed by a splash and returned urine flow.

At first, I wanted to believe this was a good sign of the chemo attacking cancerous cells. But the way she was clogging up, the discomfort it caused her, and the clumsy way she had to address this agony bothered me. This just couldn't be right.

The room where it happened

One day, I walked into her bedroom as she was using her ensuite restroom. I heard her groaning and breathing deeply.

"Are you clogged again, Mom?"

"Errrgh yes, son... Ugggh," she moaned in agony. The tone of her voice was as though she was in labor. This clot was especially bad. I sat on the tub just outside her water closet door and encouraged her through the trauma as best I could.

"Damn! I wish we would have been told about this, or that this could even happen!" I referred to the lack of communication and preparedness from her care team.

"Erghuuuh!" A loud whoosh, splash, and flowing liquid sound emitted from the water closet.

"Did you pass it?" I asked hopefully.

"Yes," she replied with audible exhaustion. She finished and cleaned up. "Son! Do you have the stomach to see this?" Not really! But as her primary caregiver, I was determined to advocate for her and give her hope. I walked in.

An alien monster

What I saw was so shocking, that I had to hold in my reaction. Inside Mom's toilet was what looked like a huge, black liver steak with tentacles. It looked to be about 4 inches in diameter. Parts of it protruded above the water line. It filled the shallow bottom of the bowl where it dropped in. The flesh was surrounded by wisps of bright red blood that pooled down in the drain hole. There were splashes of blood throughout the inner bowl. It looked like a horror movie.

How the hell did that come out of her urethra?! I thought. Is she hemorrhaging now? Do we need to go to the emergency room? Am I scaring her by my reaction? How do I turn this around? What do I do?! So many thoughts raced in at once.

"Wow, Mom, that's incredible!" I tried to force hope into my tone. "How do you feel now?"

"Better now that that's out of me," she replied. Her voice trembled. She was shaken and scared, although she wouldn't allow herself to utter such words.

"I'm going to take some pictures to show your care team." I hoped they would be able to tell us what had happened through the photos and a video that showed what it looked like being flushed. I'm not sure I will ever forget those images.

A deep breath

These urinary plumbing issues took a toll on us. Mom climbed back into bed to rest. I noticed she was breathing deeper than usual, which I attributed to the hard work she was doing in the restroom, and the associated pain and anxiety.

Nevertheless, Mom returned to preparing Easter baskets for my nieces, their partners, my sister, my brother-in-law, her friends' grandchildren, and myself. She never let a holiday go by without making incredible gift bags or baskets. This year, she needed more of my help for Easter.

I had to run to Walmart to get a few last-minute things for her. She wasn't able to go out and battle pandemic-restricted crowds. I did the best I could, but still didn't get the shopping done as she wanted. Regardless, everyone loved their Easter baskets and was floored that she was even able to get them together!

I didn't let her secret shopper be known.

Take my breath away

A week after Easter 2021, Mom had a video visit scheduled with Dr. Willkom, her family doctor at Stanford. It was on a Monday and I couldn't take more time off of work, so my sister graciously agreed to be present at home for Mom's video visit.

I called about 30 minutes after Mom's video visit start time. "What did the doctor say?" I asked my sister.

"She said we have to take Mom to the ER. She doesn't like how hard she's breathing." We quickly worked out the details and they were off to Valley Care's ER in Pleasanton.

I hoped this wouldn't mean an admission to the hospital...