The CEA Test Results

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.”

“Oh no.”

“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.

He waited.

“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.

“Yep.”

“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.”

Dad frowned.

“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.

A Rough Start: What Next? Maybe I Shouldn't Tempt The Fates By Asking!

“GOD DAMN IT! Don’t ask me again! That’s the FIFTH time you’ve asked me and I don’t want to talk about it anymore!”

I hear my father shouting at my mother as I walk carefully down the worn steps leading away from my upstairs bedroom.

“Oh no! It’s only 7:51 a.m. and she’s up?” I think.

The first five weeks after I moved home to care for my parents, I had to wake my mother from a sound sleep every morning at 9:00 a.m. The time change occurred last Saturday and I thought she would transition well to it, sleeping an extra hour each morning. But this past week, she has woke up earlier and earlier each day. I can’t seem to get up before her, even when I set my clock.

“I just want to know why I can’t have ANY COFFEE!” my mother snaps back at my father. She is diabetic and has not had her fasting blood sugar test yet. My father is denying her coffee until I get up and test her.

I step on the carpeted floor of the hallway, walk quickly down its two bedroom length and turn the corner into the living room.

My mother is leaning forward on her green velour lounge rocker, with a frustrated look on her face. She was diagnosed with Alzheimer’s three years ago and cannot form new memories easily. Lately, she seems to fixate on one question or comment and repeat it throughout the day.

She is dressed in the black pull-on pants and printed blouse that I laid out in the bathroom last night. I discovered that if I leave a pair of protective underwear on the shower seat, in front of the toilet, she will put them on if she wakes in the middle of the night and finds herself wet. I applied that idea to her clothing and started putting the next day’s clothes in the bathroom closet at night. She has found them on the mornings she gets up early and has dressed herself.

My father is leaned back on the new, tan couch. He is visibly upset and angry. Earlier this year, after his second bout of chemo for lung cancer was finished, he began to hallucinate. The doctors did tests and told my father that the cancer had spread to his brain stem. The hallucinations have been brought under control with Thorazine, even as the inoperable cancer grows. Last Friday, he began to hallucinate again. I have added another Thorazine to his bedtime dose and the increased dosage has made the little girls in white, who poke needles in his eyes, disappear.

I stand in between the green rocker and the tan couch. “DAD, YOU CAN WAKE ME UP WHEN SHE GETS UP.” I shout. My father is hearing impaired.

“Ahhhh!” He growls and waves his hand at me, as if to wave me away. The irritation he feels is mirrored in his expression. He reaches for the remote and mutes the booming surround sound system, fed by the TV. “Whaaat?” he drawls.

“IT’S OKAY IF YOU OPEN THE UPSTAIRS DOOR AND CALL ME WHEN SHE WAKES UP. I WAKE UP REALLY EASY. I’LL GET UP AND HELP.” I tell him.

“You’re up late writing your book. You need your sleep,” he says. “Besides, you always wake up before 8:00.”

“DAAAD! WHEN I WORKED IN SAN DIEGO, I GOT 3 HOURS OF SLEEP A NIGHT, MOST NIGHTS, AND I FUNCTIONED FINE. I’LL BE OKAY AND IF I’M NOT, I’LL TAKE A NAP WHEN MOM TAKES HERS.”

He shrugs his shoulders. I’ll set my clock earlier for tomorrow, because I know he won’t wake me up.

I turn to my mother. “Mom, Let’s get you up to the table and I’ll take your blood sugar. Then you can have your coffee.”

My mother scoots to the edge of her green rocker. She leans forward and pushes herself up from the worn arms of the chair. She balances her weight, hands gripping the chair arms and gets her feet underneath her. She grabs her cane, holds out her free arm for me to hold and walks, supported to the table. She sits in a table chair and waits for me to set up her testing kit and insulin.

I sit next to her. I give her an alcohol swab to clean a finger. After she wipes her finger with the swab, I hand her the Ulti-Lance® Automatic Adjustable Lancing Device to prick it. She positions it on her finger, pushes the trigger and says, “Ouch!”

I load an Eclipse test strip into her GlucoLab™ meter and as she squeezes blood from her finger, I apply the test strip. The capillary action of the test strip pulls the blood from her fingertip.

“Five, four, three, two, ONE!” I count down with the meter. “Oh no! Your blood sugar is 229!”

“Is that good?” my mother asks. Four years ago, she tested daily and maintained a diet that kept her blood sugar between 90 and 130. That’s the goal we are now trying to make.

“It’s too high, Mom.” I tell her. I show my father.

“229?” he asks. “What’s she been doing?”

“I THINK I SHOULD HAVE GIVEN HER A HALF OF AN ORANGE LAST NIGHT, INSTEAD OF A WHOLE ONE.” I say.

“Okay.” He walks back to the couch, shaking his head. Last week she tested 130 and 131 on two consecutive days.

I insert the BD Ultra-Fine® II insulin syringe into the Lantus®, turn the bottle upside down and withdraw 10 units of insulin.

“Where do you want it?” I ask.

She slides up her left sleeve. I wipe her upper arm with another alcohol swab. I insert the syringe. It resists, then goes in. I wince and quickly plunge the insulin into her arm. I pull out the syringe and rub the injection site with the alcohol swab.

“How’s that? I ask.

“Pretty good,” answers my mother. Apparently she didn’t feel the resistance.

“I’m setting up a new needle for tomorrow.” I tell her. I toss the old needle into the sharps container on the end table we use for the medicines.

“Now, I’ll get you coffee.” I tell her.

“Finally!” she says.

I notice her feet are bare when I set her black coffee on the table in front of her. I walk to her bedroom, get a pair of socks and hand them to my father. He has developed a ritual of putting her socks on her each morning. She insists she can’t bend down to put them on, but every once in a while I see her do it. Not today, though.

“Oh! Your feet are bare,” says my father. He hobbles to the table, bends down and puts her socks on. “I get to gaze upon your lovely, painted toes.”

“You’re a keeper!” she says and gives him a smile. This is why he puts her socks on each morning. He likes to hear that specific compliment.

I go into the bathroom to change into clothes. I see her used protective underwear lying on the floor under the shower seat at the same time I step into a wet spot on the carpet in front of the sink. I sigh and pick up the underwear. It has soaked through the carpet in front of the toilet and left droplets of urine on the floor tile. I throw the underwear into the waste basket, pull the liner out and tie it closed. I pull the extra liner from the bottom of the trash can, shake it and line the can with it. I pick up the rugs and pile them outside the bathroom door, along with my mother’s nightgown. I take a Clorox wipe and clean the floor. I reach into the closet for clean carpets and place them on the cold tile in front of the toilet and sink. I wash my hands, change from my nightgown and pick up the trash bag and dirty clothes, as I leave the bathroom. I drop the clothes into the laundry basket on the back porch and throw the trash into the trash can on the patio outside. I wash my hands, again, take the clothes out of the dryer, transfer last nights wash into the dryer and then fill up washing machine with a new load. I start the machines. I wash my hands a third time.

I throw defrosted ribs into my computerized Crockpot for tonight’s dinner. I cook a breakfast of ham, eggs and toast. I serve my mother at the table and my father on the couch. I set my place next to my mother. We eat silently, while the TV blares and when we’re done, I collect the dishes to soak in the sink.

My mother gets up, walks to her green rocker and sits down. “Will you bring me coffee?” she asks me. I rewarm her coffee and bring it to her.

There is a knock on the door. Our Maltese, Roxie, growls and begins to yip shrilly. I answer the door, while shushing the dog.

“I’m from Pacific Power. I’m here to collect on an overdue bill,” a woman says.

“I paid them!” my father hands her a bill for September marked paid. It’s now November.

“Sir, you’ll have to look in your checkbook,” she says, looking a little unsettled.

I follow her gaze and notice he has blood under his nose. It looks like the toothbrush moustache that Hitler wore. I make a mental note to tell him after the Pacific Power lady leaves. He steps back into the house.

“He has brain stem cancer.” I tell the lady, to explain the September bill. “How much is the bill? Do you take credit cards?”

“Oh. I’m sorry,” she answers. “$180.88 is due. You’d have to call it in over the phone if you use your card. I can take a check.”

“Even if it’s a California check?” I ask. Some companies don’t want to take out-of-state checks.

“Don’t matter to me,” she says.

I write out a check. I ask if the company will credit the double pay to his account when they get the check he sent. She assures me they will.

When I go back inside, I see that my father has laid out all the bills on the table. He is searching for the power bill.

“IT’S TAKEN CARE OF, DAD,” I tell him.

“There!” he says, pointing at an entry in his checkbook. Instead of writing Pacific Power, he had written the monetary amount on the payee line, when he recorded the transaction in his checkbook.

“OKAY.” I said. “NEXT MONTH IS ALREADY PAID FOR.”

He starts trying to figure out what bills he has paid and what bills he owes. The piles of bills are too overwhelming and he says, “I’ll do this later. The checkbook’s a mess.”

“YOU CAN TAKE IT TO YOUR BANK AND THEY WILL BALANCE IT FOR YOU.” I tell him.

“Ahhhh.” He shakes his head, “I don’t want them to see how I messed it up.”

“YOU KNOW, THEY’VE PROBABLY SEEN WORSE.”

He shrugs, gathers the bills into piles and shuffles off to the couch.

“I don’t know what’s wrong with me. I think I’ll go to bed,” says my mother.

“No, Mom. You just ate. You’re blood sugar is up. Drink some water. It’ll make you feel better. You have to wait until after lunch to take a nap.”

She looks at me as if trying to figure out an argument to rebuke my statements, and then she takes a drink of water from the bottle on the end table. “I can’t take a nap?” she asks.

“No. If you sleep now, you’ll stay in bed all day, and then be up all night. It’s not fair to the rest of us.” I tell her.

“You can stay up to entertain me.” She grins, widely. Her eyes are devoid of cunning. They look as innocent as a two-year old’s eyes.

I smile and shake my head. She continues to grin at her joke. I know the focus of the questions of the day. They’ll be about napping.

I hit the ground running this morning, when I wanted a slow start. It’s calm now, but I can’t help but think, “What’s next?”

Maybe I shouldn’t tempt the fates by asking.

My Dad Has A Brain Tumor And It's Inoperable

I drove my father to his doctor’s new office, yesterday, for a general checkup. We talked about the wooden beams bracing the ceiling and the glass block walls in front of the reception area as we waited. Everything seemed to be alright. After a lengthy wait in the lobby, the nurse called him in, weighed him, and showed him to an examination room where she asked him to get up on the exam table.

“DAD, DO YOU WANT TO SIT IN THIS CHAIR? MOM SAT IN A CHAIR WHEN SHE WAS HERE.” I said loudly. My father can’t hear out of his left ear and has impaired hearing in his right ear.

“Nah. She said ‘the table,’” he answered.

Once my 78 year old father shakily perched himself on the table, the nurse told him that he needed to have his Coumadin levels checked. She pricked his finger, put the blood on a test strip and waited for the results.

I asked, “What’s a Coumadin?”

She looked at me and said, “It’s his blood thinner medicine. We have to check his blood every month.” She looked sideways at my father and winked. “JOE HAS NOT BEEN TOO GOOD ABOUT THAT,” she said loud enough for him to hear. He smiled.

I said, “We’ll have to change that.”

She continued, “If his blood gets too thin, he could hemorrhage. If it’s too thick, he could have a stroke. Aaaand…,” as the test unit beeped, she looked at the test strip, “It looks good. Keep his dosage the same.”

“Okay.” I replied.

She wrote the information into his chart, and then looked up at my father, waiting on the edge of the exam table, “DOCTOR WILL BE IN TO SEE YOU IN A LITTLE BIT.”

While we waited, my father strained to look out the window. The window shade was the type that closed from the bottom to the top. It covered the lower half of the window, blocking the view of everything, but the grey, overcast sky. I walked over and adjusted it, so he could see the trees covered in yellow, orange and red foliage and the birds practicing their flight south.

The doctor came in, said hello and checked my father’s chart.

“HOW ARE YOU DOING?” he asked my father. He nodded to me.

“Oh, okay,” my father answered.

“WELL, TODAY WE’RE GOING TO TAKE BLOOD FOR YOUR CEA.”

“What’s a CEA?” I asked the doctor.

“It stands for cancer embryonic antigen. It’ll tell us where the colon cancer has gone.”

I took notes as he spoke.

He turned back to my father. “ARE YOU GETTING A FLU SHOT?”

“Yes! I almost forgot about that,” answered my father.

The doctor checked the chart once more. “THEN I’LL GIVE YOU THE PNEUMONIA VACCINE, TOO. IT’S DUE.”

My father nodded.

The doctor stood up. “THE NURSE WILL BE IN TO POKE YOU,” he nodded to my father, then to me. He handed me a lab sheet that had itemized procedures listed on it. He had circled the items for my father’s treatment plan.

My father adjusted his seating and grimaced. “I gotta… get off …this table. My legs…they’ll lock up,” he said.

He slid forward and eased off the table. He walked to the window and looked out at the new construction going up just west of the doctor’s office. He walked around the small room and looked at the autographed and numbered duck prints mounted on the walls. The expression on his face said he wanted to be anywhere but in that room.

The nurse opened the door and entered the examination room. She took the lab sheet and read the doctor’s orders.

“I’M GONNA POKE YOU A LOT TODAY.” She said to my father. She set up for a blood draw.

I said, “YOUR BIG VEINS MUST MAKE IT EASY TO GIVE BLOOD.”

My father answered, “That’s what they say. Then they go to take blood and find out they roll. They think I have good weins….Damn!”

“VEINS?” I prompted.

He nodded and didn’t talk very much after that. After his blood draw, two vaccinations, and the nurse’s promise to call with the results of the CEA test next week, he was in a hurry to leave. I had to stop him from walking out of the office while I made his next appointment.

On the way home, I said, “LOOK AT THE COLORS OF THE TREES. THOSE RED LEAVES ARE SO BEAUTIFUL. IT’S WONDERFUL TO SEE THE SEASONS. WE DON’T GET THAT IN SAN DIEGO. IT’S ONE SEASON ALL YEAR ROUND.”

“It’s as good as….it’s as good as…,” my father stammered, then stopped.

I turned slowly to look at him, as I drove. He looked scared. He raised his hands, palms up, in front of him as if to say, “I don’t know what’s wrong.”

I asked, “ARE YOU HAVING TROUBLE TALKING?”

He nodded, then looked down towards his lap. He slouched in resignation. His ruddy complexion paled. His eyes watered, yet his jaw tightened in defiance. He still had fight in him.

“IT’LL COME BACK.” This had happened once before.

He looked really scared. This man, who fought his last bar fight in his 60’s, who outran cops rather than be apprehended, and who ruled his kids and his wife with an iron hand, was helpless against the tumor growing on the left side of his brainstem...the side that controlled language. I took him home and fed him. He ate silently and then took a nap.

After his nap, he began to speak, again, although slowly. “I couldn’t talk. I couldn’t understand what people were saying. I still can’t see right. It’s like being cross eyed.”

Later that night, he told me he had a horrible headache. I knew the tumor had been growing, putting pressure on his brainstem, causing the speech dysfunction and the pain.

“DO YOU WANT A VICODIN?” I asked.

“What’s that?” I give him Vicodin twice a day for pain management. Hospice has prescribed them for the pain his cancer causes. The prescription says I can give him up to three pills, twice a day.

“IT’S FOR PAIN.”

“Yeah, I’ll have one of those,” he said.

I gave him one and he went to bed. Later, I woke him for his last set of medications and asked him how his headache was.

“I must have slept it off,” he answered. He took his medicine and quickly went back to sleep.

My father has said that he felt he would die on his 79^th birthday. It’s in two days. I’m hoping that when he goes it’s with clarity of mind, so he can hear me tell him to save me a place on the other side.