Carcinogen Embryonic Antigen (CEA) tests measure markers in the blood for lung, liver and colon cancer. Dad had opted for no treatment for his slow growing cancer for the last two years. His CEA scores have been in the same range since I began caring for him 15 months ago. This is the story of his latest test.
We’d just settled into that after dinner stupor and were getting ready to watch the latest Netflix pick, when the phone rang. I scrambled for the phone, then waited while Dad fumbled with the concept of mute on the remote. He got it by the third ring and I pushed the talk button on the phone.
“Hello,” I said into the mouthpiece. “This is Sandi.”
“Sandi, this is Chris.” It was the head nurse at Dad’s primary doctor’s office.
“Chris, you’re working really late, tonight,” I said.
“Well, yeah,” she answered. “The reason I called is because of the results of your dad’s CEA test last Monday.”
“Oh. He had another one?” He hadn’t mentioned it.
“Yeah. You remember the last one he took in June was 25.3?”
“Yep. I remember.”
“Well, this last one is 40.2. It’s almost doubled.”
“I think you should have a family meeting and talk over the options of treatment or taking comfort measures.”
“Oh. Okay,” I said. “Chris, what do the numbers mean, besides the disease progressing? Is it a percentage? Is 100 the top number? What number is fatal?”
“I just know it means the cancer is growing,” she answered. “You’ll have to ask the doctor at his next appointment.”
“Okay,” I said.
“Make sure you tell him,” she said, referring to Dad.
“I will. I’ll make sure he understands what’s going on,” I answered. “Thanks for letting me know.”
When I hung up, Dad pushed the mute button on the remote and the TV blared at preset concert levels. I walked to the couch, sat down and reached over to take the remote from him. I muted the TV.
“I have to tell you something,” I said, loudly. Dad is hard of hearing.
“That was Chris giving me the results of the CEA test you took at your last visit. She said that your numbers had almost doubled. She thought we should have a family meeting to talk about whether or not you should have chemo again or just let it ride.”
He looked at me with tired eyes and gave a quick answer. “I’ll just let it ride.”
“What are you letting ride?” asked Mom. She’s in the middle stages of Alzheimer’s. She can hold a conversation, but the emotional involvement isn’t there. In this case, it’s a blessing in disguise.
“We’re talking about Dad’s cancer, Mom,” I answered her.
“Cancer?” she asked. “I didn’t know that.” She looked worried for a moment, then her face relaxed.
I turned back to Dad. “Do you know what I mean by let it ride?” I asked. “I mean no treatment. You get comfort measures so you don’t hurt while you die from your cancer.”
“I’ll have pills so it won’t hurt?” he asked.
“I’ll let it ride,” he said.
He took back the remote and blasted the TV back to life. I looked at his stoic face, got up and sat on my spot on the loveseat.
He watched the TV while I sent texts to family members, updating them on Dad’s health and his choice for managed comfort. After an hour, he muted the TV.
“I think I’ll take chemo,” he said. “But I don’t want that thing they put in me last time.” He rubbed his chest. “I still itch.”
“Dad, they may have to put in another port.” I explained. “Your veins roll. It would be for your comfort.”
“What port?” Mom asked, shifting her weight and leaning forward.
“If Dad has chemo, he may need a port for his treatment,” I told her.
“Does he have cancer?” Her forehead creased in concern.
“Yes, Mom. He does.”
“I didn’t know that.” She leaned back, lifted her little finger to her lower lip and rubbed it back and forth. Slowly her forehead relaxed as she forgot the conversation.
I turned to Dad. “It’s your choice. You have two weeks until your next appointment. Don’t make a decision now. Just think about what you want to do.”
He nodded and hit the mute button, bringing the sound levels back up to movie theatre volume. He watched TV until 9:00 and then went to bed.
The next morning, when I got up Dad told me he had tried to make coffee, but forgot to put the coffee grounds into the coffee maker. I laughed, because I was expected to, but it was another of a long list of actions that made me aware that things were changing for him.
The day before he had asked, “Do you hear that radio?”
I had turned my head, aiming my good ear in his direction. “No Dad,” I had answered.
“Shit!” he said. “It must be a hallucination.”
I’d nodded and wrote it down on the list I take to the doctor for parent appointments. Auditory hallucinations followed weekly strokes with optical effects, increased urination, amplified forgetfulness and frequent impatient outbursts of anger.
Later, Dad began to talk about chemo. “This will be the fourth time I’ve had chemo.”
“Won’t this be the third time?” I asked.
“No,” he answered. “I had it for colon cancer, lung cancer and brain cancer. I still can’t figure out why they gave it to me when I didn’t have brain cancer.”
“You didn’t have chemo for brain cancer, Dad,” I said, hesitantly.
“Yes, I DID!” Dad insisted that he had been given chemo for his misdiagnosed brain tumor after a CAT scan found shadows in his brain. He had fallen at the hospital and the sound of his head hitting the floor brought the nurses running to his room. He had been given three to five months to live and started receiving Hospice care. After eight months, he had another scan and it was discovered that the shadows had been blood from a hematoma caused by the fall. It wasn’t cancer. He got Hospice, not chemo. Hospice helps people who are not on any treatment for recovery.
“Daaaad,” I said. “I think you had two rounds of chemo for your colon and one round for your lung.”
“God damn it!” he yelled. He slapped the hand nearest me, down on the couch. His jaw tightened, his eyes narrowed and his face turned red. “I had chemo for brain cancer!”
I tensed at his anger. Fear coiled in my gut like a snake and I wanted to leave the room. I marveled at how he still scared me at 55 the same way he did when I was a child. I was scared of him in his anger, even though I could take him, if I had to. I could surely outrun his zombie shuffle. I wondered if his cancer had progressed into his brain to cause the changes I had been seeing. I hoped it was just the normal dementia of aging.
Years of self analysis helped me to make the next decision. I asked myself, “Do I want to be right or do I want peace?” Residual childhood fear would accompany the choice to be right. I didn’t want to feel that. I chose to stop confronting his beliefs and go for the peace option. I stopped talking about the reality of his treatment and he calmed down. He got the last word and that made him right in his eyes.
Later, he changed his mind about having more chemo. He wanted to let it ride. I asked him once more to just think about it and not make a decision until the day of his doctor appointment. That’s the plan for now.