A portrait of the author's mother.

Treating Mom with BCG

About 10 days after Mom's successful TURBT procedure, her oncology surgeon began her on a regimen of BCG. Fortunately, the progression of the cancer after her TURBT showed stage 1 urothelial carcinoma, not muscle-invasive.

However, it was aggressive. The surgeon reiterated that fact to my Mom - this was an aggressive form of bladder cancer, and radical cystectomy was a definite consideration. Mom wanted to save her bladder.

A tuberculosis drug?

When Mom walked out of her cystoscopy after healing from the TURBT, she was armed with a battle plan.

We would have 6 instillations of a "tuberculosis drug," she told me. No chemotherapy. She said the drug would cause her immune system to attack the cancer cells. We were immediately on board, as one of her biggest concerns was losing her hair to chemotherapy. No such possibility with BGC!

Mom was to hold the medicine in her bladder for up to an hour and then void it into a toilet. She was instructed to immediately pour about a cup of bleach into the toilet before flushing. The apparent goal was to kill the BCG, but I couldn't help but wonder why? Like, was this bacterium that dangerous it could not be let out into the general sewers?

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Instillation station

We moved forward with the BCG intravesical therapy soon after receiving the plans. I loved those drives out to the hospital in Pleasanton, about 45 minutes from our home in Manteca. We would listen to the 60s XM station, and Mom would sing along and share some of her memories. I adored those moments because I knew I was creating something special with Mom.

I was able to go with her into the lobby and waiting room for her first appointment. We were still mid-pandemic in the summer of 2020, so I felt fortunate to be by her side. Unfortunately, I was not allowed in the installation room, so I went downstairs to the restrooms and waited in the car. I decided to grab some bagels at Noah's, and I returned as Mom was walking out. She had the BCG in her as we spoke.

"Let's go, Son."

"Where do you want to go? Don't you have the medicine in you?"

"Yes. Let's go Home."

"But Mom, we're 45 minutes away. Can you hold it in that long?"

"I think so..."

Holding in for dear life

That first time, we made it home. She ran into the restroom from the car and barely made it to the restroom. Ever the star patient, Mom flushed with bleach and began to settle in for a relaxed evening. I made her a bagel, and we waited to see what would happen.

By the evening, Mom was starting to feel sick. She best described it as feeling like the flu or cold and definitely felt itching and burning in her bladder. A bit of body soreness crept in as well. We knew this was a possible side effect, so I encouraged her that this was a good thing.

I let her rest in bed as much as she would as I took care of the house and chores. We settled into this routine pretty well and quickly.

Burning to make a difference

Future BCG instillations went about as well. Mom would feel sick for a couple of days after instillation but feel better by the following week for treatment. However, the itching and burning were getting more intense with each instillation.

Mom began to feel uncertain we would make it all the way home, so true to her style, she wanted to go shopping while she held the BCG.

We made a habit of going to a crystal shop nearby, and each time we found a crystal or two to add to our collections. Mom also found some adjustable gold necklace chains that she wanted to buy for my nieces and sister.

Foster's Freeze, our favorite lunch spot, was just a block away. Not only did we like the old-time burgers and fries, but they also had clean and well-stocked restrooms. Restrooms were always an important feature of any place we went and were hard to find during the pandemic. I appreciated this fast-food restaurant so much for keeping clean facilities for Mom to use!

These little blessings maintained us as we battled together.

Urgency and waiting

We tried to go home on her last instillation and made it about halfway when intense urgency hit her.

"Go to Home Goods!" she exclaimed. I didn't know if this was a retail emergency or urinary. It was the latter.

Fortunately, we found a clean restroom, and Mom found treasures at Home Goods to keep her mind off her discomfort.

"I bled a little," she admitted as we stood in line.

All we could do was wait for her next cystoscopy. The waiting is the hardest part.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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