Mom's First Intravesical Chemo Instillation

At the end of January 2021, Mom had a sleep study in the same town we had driven into for her BCG treatments. I noticed appointments were ramping up. It seemed we saw one specialist after another, but I did my best to conceal my overwhelm. Mom was getting more pensive and introspective, which concerned me.

The sleep study indicated her sleep apnea and COPD was causing a disturbance in her quality and ability to sleep. A new CPAP machine would be ordered. Moreover, intravesical chemotherapy was to begin in February.

Chemo regimen

Mom told me that chemotherapy would comprise 2 drugs instilled into her bladder. She would hold them in as she did previously with the BCG treatments and void them out after about an hour.

As was becoming the norm, she was fuzzy on further details. Obviously, the fear and overwhelming nature of this nightmare prevented her from fully taking in what doctors were saying to her. She caught what she could, and I had to research to fill in the rest.

Because this was to be administered into the bladder, chemo drugs wouldn't touch any other cells except the ones lining the bladder. My research showed that the chemo wouldn't even touch the bladder muscle lining, just the internal urothelial cells.

This gave me hope - the doctors must believe the cancer is still only at the surface. I leaned into that hope within my own heart and in conversations with Mom.

Far too familiar

We had to drive into Palo Alto to go to the main Stanford University Cancer Center. Urologic oncology was not performed at the smaller hospital in Pleasanton, where we went for her BCG instillations.

We used to make this multi-hour drive so often about a decade prior when Mom was battling lymphoma and PRCA (pure red cell aplasia). I never dreamed we would be back in a similar battle.

This was the first time we had been this far from home and outside our county since the Pandemic lockdowns. It was initially surreal and scary until we realized the Bay Area counties were handling pandemic protocols way better than at home. We felt pretty safe in the hospital at Stanford and the surrounding vicinity.

The day arrives

The Stanford Cancer Center has its own parking lot and wing of the hospital. Sadly, this had become familiar ground. We parked, and I walked in with Mom.

Technicians took our temperatures and asked us screening questions outside the center's curb. I remember thinking, my goodness, what would we do if we failed this screening? Would we be able to get Mom the care she needs?

We passed, luckily, and were allowed into the lobby. Everyone wore masks. There was hand sanitizer everywhere. Another receptionist told me I would have to wait in the lobby for Mom. She had to be alone in her trauma yet again!

"Ok, Mom, I will see you when you're done. I'll be waiting here, and you can call or text me," I offered.

"Ok, Son." She had a heaviness that was undeniable.

We exchanged a hug and kiss on the cheek. Mom walked the long corridor to Urology Clinic F and disappeared. I grabbed onto the healing crystals I had brought and poured into a book to keep my mind busy.

Burning

It seemed too fast to see someone who walked and looked just like Mom. I knew something wasn't right. Mom sat next to me in the empty chair. She was writhing in discomfort.

"I have the medicine in me. Oh, it burns so much!" I could see her distress.

"How much longer do you have to hold it in?"

"As long as I can for an hour, but it's only been 15 minutes." Her discomfort was palpable. "I just don't want to have an accident."

"Mom, who cares, and who could blame you? Your bladder has been through so much!"

"This is just the first medicine. I have to do this again when this one is done. I just don't know, Son..." her eyes got misty.

We sat silently in the lobby in a state of fear and hopefulness. It felt like hours crept by.

"I can't wait anymore, Son," she said suddenly as she got up and began to walk the long way back to the clinic.

"Mom, there's a restroom right here! Don't you want..."

"I'm going to the clinic, so they know what's going on!"  She scuttled away resolutely.

A setback

After maybe 15 minutes, she appeared down the long corridor walking back to me. I saw the distress on her face as she got closer.

"They canceled the second medicine because I had a reaction to the first," she said with tears in her eyes.

"Oh no, Mom, what should we do?"

"Let's go home. We'll try again next week." Her voice trailed off as she got lost in thought.

My poor, brave Mom.