Thursday, December 11, 2008

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.


“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.

Thursday, November 20, 2008

Walking On Glass

You know how uncomfortable it is when you go to someone’s house when they’re fighting? That’s what it’s like here. No one is saying anything provocative, but the tension is palpable. My husband and I are not looking at each other. We’re staying way out of each other’s comfort zone. It’s like walking on glass; trying to take the right steps, but one false move and you limp away hurt and bleeding with a wound that takes a long time to heal.

My face is blotchy and my eyes are red from crying. I just put an icy cold washcloth over my face while I was in the bathroom to calm down the color. I don’t want my Dad to ask if there is something wrong. He’s hard of hearing and I would have to yell the answers to his questions. My husband wouldn’t appreciate being talked about so loud that the neighbors got the gist of our fight. Neither would I.

I’m so overwhelmed every day with the regular routines. This is so much harder than I thought it would be. The work is doable with minimal training, but doing it daily without a break is so hard. Every morning I get up, get dressed, then launch into two hours of work (laundry, sponge bath and toileting for my mother, help her to get dressed, fix her hair and brush her teeth, take her blood sugar and give her an insulin shot, give her the first of three rounds of medicine, fix and serve breakfast, wash dishes and do what I have to do to prep for dinner) before I can sit down and get a moment for myself. The TV blares so loud that my ears hurt, but I have to stay in the same room with my mother, in case she has to go to the bathroom or needs something. My father always finds another thing for me to do, but most of the time, he doesn’t come right out and ask. He’ll drop a hint, so I will ask and it will look like it’s my idea to do it because it came from my mouth first.

I’ll write the checks and pay the bills with his checkbook, even though he can do it. He complains about not being able to write like he used to. Yeah, abilities change with time, but he is still capable. My mother always did the bills. That’s why he’s giving it to me. It’s women’s work.

I’ll call to straighten out bills with errors, negotiate settlements with bill collectors and set appointments at the various doctors that the parents need to see so often. I keep the dates on two calendars, one on the wall that he can check and the other in my purse so I don’t overbook appointments. His partial deafness makes the phone work too difficult for him to do, so I do it.

My mother will dose in her easy chair and I will start to write, focusing despite the blaring TV. He’ll pick up the remote, mute the sound and launch into the tenth retelling of a story about something he did with someone some time ago. I enjoy his stories, but we used to get backhanded for interrupting him. I mean, he can see me with the laptop on my lap, looking at the screen, fingers flying over keys as I write the story aching to be told. Why doesn’t he read my body language? Geeesh!

Soon, it’s time for lunch. I make sandwiches or cook soup, pizza or quesadillas and serve the food to all of us. Afterwards, I do dishes, take my mother to the bathroom and then put her down for a nap. If I’m lucky, she’ll sleep for three hours. Most of the time, she sleeps one to one and a half hours. She’ll wake on her own or my father will stop on his way to the bathroom to talk to her, waking her up. I guess he misses her. I, on the other hand, am trying to write while tuning out the various cop and detective shows that he watches at full volume. Or I take this time to go grocery shopping or to my own doctor appointments. Husband and I used to go out for a drive, but the rising gas prices and our low income keep us from doing that very often.

Once my mother gets up from her nap, finishes her toileting and takes her second of three rounds of medicine, she wants a snack. As soon as she’s done with the snack, she starts asking about dinner. What is it? When is it? Who’s cooking it? I answer her, only to have to answer her again ten minutes later. Sometimes the constant questioning forces me out into the kitchen to cook before dinnertime, just to put a stop to it.

After dinner, I wash dishes and sit down for family TV time. We watch a movie or a segment of a TV series on DVD. Around 9:00 p.m., my father goes to bed, but my mother won’t be ready to sleep for another hour or so. I test her blood sugar, give her the third and last round of medicine of the day and top it off with 10 mg. of Lorazepam to help her stay asleep through the night. She’s needs physical support to get around and dietary choices to manage her diabetes. It’s dangerous for her to wander at night. Thank God for Lorazepam.

Around 10:00 p.m., I help my mother to brush her teeth and get ready for bed. After she’s down for the night, I lay on the love seat while my husband lies on the couch, running his fingers through my hair. Together we watch a recorded show. The new season has started for Ghost Whisperer, Supernatural, Heroes and Survivor. There are new shows to add to our favorites list. True Blood is one. Then there are the numerous political shows that help us to make an informed decision on Election Day.

Around midnight I shower and head upstairs to bed. While my husband drops off to sleep, I write. After midnight is the magic hour, when I can hear my thoughts and let them become concrete stories on the computer screen. Around 2:30 or 3:00 a.m., I started stressing about how functional I will be in the morning and I save my work, turn off my computer and snuggle under the duvet and into sleep.

One day is pretty much the same as the others, unless there is a poopsident or an emergency. It doesn’t sound like it’s hard, but try being on call 24 hours a day, seven days a week, without a break.

I tend to lose who I am and just become the one who serves others. Not without resentment: there are things I want to do with my life. I want to write and be published. I want my books to be made into screenplays and then into movies. I want to travel. I want to get a hot rock massage at a spa. I can work on my writing, while I’m the caretaker, but everything else is on hold until after I’m done here. Last year, my mother’s doctor told me that Alzheimer’s victims typically live five to seven years after their diagnosis. My mother was diagnosed about four years ago. My father has heart problems and a slow growing cancer somewhere in his body. He thinks he’ll go before my mother. So, if I had to make a guestimate of how long I will be caretaker, I would say about three to four more years. That’s a huge investment of time. I try to take it day by day, so I don’t feel too resentful about putting my life on hold. I’m no Pollyanna, though. Some days I just want to cry, because I know I can’t quit this job.

Like today. My husband is upset. I’m not quite sure why. I know it’s because of something I did or didn’t do. We don’t often fight, but when we do, it’s hard to pinpoint just what started it. Usually, it’s a build up of a whole lot of things: communication problems, financial woes, not enough us time. Today I think it’s all three.

I wish he could step into my shoes and feel how I feel. I really need him. Most of the time, I can talk to him about the things that frustrate me and he totally gets them, commiserates with me and makes jokes about bizarre solutions to the everyday problems. He helps me purge my resentments and keep going. When we fight, I feel like I’m in this all alone with no end in sight. I feel hopeless and helpless. That’s the feeling I wish he could tune in to. I think if he felt it, he would do whatever he could to keep me from feeling that way.

I know this is hard on him, too. He gave up his union job, his family ties, his film school and Hollywood dreams to follow me to Oregon to care for my folks. His life is on hold as much as mine is. It’s us against the situation. We need to work things out if we want to make it through this together.

Saturday, October 11, 2008

At The Hospital With Mom

This happened in March 2008. Mom spent 9 days in the hospital and 6 weeks in a skilled nursing facility before returning home. She is doing fine, now, but it was touch and go for a while.

Tuesday night after dinner, I took my mother to the bathroom. I helped her pull her pants down and get seated on the toilet. After toileting, she could not wipe.

“My arms aren’t long enough,” she said.

I cleaned her and pulled up her pants. I guided her to the sink to wash her hands. I turned on the water for her. She put her hands under the water and just stood there letting it run over her fingertips.

“Pick up the soap,” I said.

She picked it up and held it under the warm stream of water.

“Pull it out from under the water.”

She pulled her hands and the soap out of the running water.

“Rub your hands with the soap.”

She began to make lather.

“Put the soap down. Wash your palms. Wash the backs of your hands. Wash your fingertips.” I gave her instructions one at a time. It was all she could process.

Afterwards, she grasped her walker and hung on to it as she shuffled into the hallway that leads to the living room. After a few steps, she stopped.

“Lift your foot, Mom,” I instructed.

She couldn’t move. I reached down and tugged on the pant leg of the foot I wanted her to lift.

She couldn’t do it. She started to slump to the floor. I thrust my hands under her armpits and held her 197 pound body. Shaking with increased adrenaline, I called my husband to help.

Freddy ran into the hallway. He held her from the front and I held her from the back. I tried to get her to respond to my shouted commands to stand. She slumped and pinned my hand to the walker.

“Freddy!” I yelped. “She’s pinned me to the walker!”

He pulled her away from my hand. She started sliding out of my grasp. I placed my knee between her legs and she sat on it as she collapsed to her knees.

“Bob! Bring us a chair!” Freddy yelled to my father.

My father brought a wooden chair into the hallway. Freddy placed it behind me. I worked my way behind the chair while holding onto my mother. I pulled while Freddy lifted and we dragged her unresponsive body into the chair.

“Mom!” I yelled. She opened her eyes, looked at me and closed them again.

“Mom! I’m going to take your blood sugar.” I turned to my husband and barked, “Freddy, get her insulin and kit, please!”

He ran to the kitchen and got her insulin out of the butter compartment in the refrigerator door. He ran back to me.

“Where’s her kit?” he asked.

“It’s…it’s …it’s…” I couldn’t articulate. “I’ll get it. Make sure she doesn’t fall.” He nodded.

I ran into the living room and grabbed her kit from the top of the medicine console. “I really need you to know where these things are!” I complained, loudly.

“I know!” said Freddy.

I ran back to the hallway and opened the kit. I inserted a test strip into her meter. I tore open an alcohol pad and rubbed it on her fingertip. I pricked her fingertip and squeezed until a small globule of blood appeared. I touched the test strip to it and watched the meter count down. 5, 4, 3, 2, 1…457. I slid her needle from the kit and loaded it with 27 units of insulin. I cleaned her arm with the alcohol pad and gave her the insulin injection.

My father said, “I think she should go to the hospital. Insurance will pay for it.”

“I think you’re right, Dad.” I said. I looked at my husband. “Freddy, will you call for an ambulance?”

“Okay,” he said. He went into the living room and began looking for the ambulance phone number in the phone book. After a few minutes, he came back into the hallway. “Should I call 911?” he asked.

“Watch her. I’ll do it.” I said.

I found two ambulance numbers in the yellow pages. I called one and a recording said it was the fire department. I hung up and called the other number. A recording told me that I had the ambulance and gave me choices to push on the touch tone phone.

“Agent!” I said, not wanting to navigate the robo-system.

“I’m sorry. I didn’t hear….” I hung up and dialed 911.

When the 911 operator came on I gave my name, address and requested an ambulance for my mother.

“Is she conscious?” she asked.

“Yes.” My voice trembled.

“Is she breathing okay?”


I wanted to cry, but knew I had to keep it together so I could give information to the operator. She asked what had happened to my mother and I told her. She assured me the ambulance was on the way. I hung up and went to wait in the hallway with my mother.

An ambulance and a fire truck pulled up in front of the house. Four paramedics came in. They worked together to check and record my mother’s vital signs, blood sugar and medications used. Her blood sugar had gone up to 488.

My husband pushed her wheelchair into the hallway. I helped to lift her out of the chair and into her wheelchair. The paramedics pushed her through the house and out the back door where they loaded her onto a gurney.

“Call my brothers and sister!” I yelled to my husband.

“Okay,” he answered and went back into the house to get their emergency numbers from the list posted on the wall, next to the calendar.

The paramedics rolled the gurney down the side of the house, to the street and loaded my mother into the ambulance. I climbed into the back and strapped myself into a seat next to her, wanting to be close in case she felt lost.

The paramedic inserted an IV line into my mother’s arm. “Ready,” he said to the driver. He grabbed the radio mike and keyed it to tell the hospital that it was 8:30 p.m. and our ETA was in six minutes.

ER staff rolled her into room 24 as soon as we got there. They checked her blood sugar. The meter couldn’t record it. It was over 500. A nurse took blood for the lab to test. They started a five hour cycle of checking her blood and giving fast acting insulin to bring it down.

My youngest brother and his wife walked into room 24. They waited with me through the testing process, a CT scan and the PCU admission in the fourth hour after her arrival. Sharing the burden felt less terrifying.

We went home after 1:00 a.m. I showered and went to bed, waking every few hours. In the morning, I fixed a heat and serve meal, then went to the hospital with Freddy.

My youngest brother’s wife was waiting at the hospital entrance. “She’s been crying this morning,” she said. “She doesn’t know where she is or why she’s there. We should stay with her in shifts, so she won’t be scared.” I agreed.

We went straight to my mother’s room. She lay in bed looking at the wall in front of her. She looked scared.

“I thought you left me in a nursing home,” she said with a sorrowful look in her eyes.

“I would never do that.” I told her, remembering the promise I made to her 41 years ago when she worked at a convalescent home. I felt sorry that I had gone home the night before.

I stayed with her taking a break in the early evening to eat and go back to the house to pack for an overnight stay. My youngest brother and his family stayed with her while I was gone. During the night, nurses woke her every two hours to take her blood sugar and give her insulin. They changed her disposable diaper and cleaned her thoroughly each time.

She ate breakfast in bed. Afterwards she asked for the bedpan. The nurses got it for her and put her on it. When she finished, they’d take it. A few minutes later, she would ask for it again. This happened three times. When the doctor came to see her, I asked for her to be catheterized. When they put the catheter in, she filled the bag with 800 ccs of urine. Something had impeded her natural flow, making her feel the need to urinate frequently.

They took her blood sugar and got her up for lunch. She sat in a chair next to the bed and began to eat. A nurse came in and gave her a shot of insulin. She continued to eat. After a few bites, her hands began to shake. I covered her legs, in case she was cold. She ate a little more of her food. She grabbed hold of her water cup by putting two fingers inside and her thumb on the outside. She pulled it to her breast and held it trembling. I took it and held it to her lips. She drank and drank and drank. She picked up her fork, put it in her chicken soup and raised it, dripping to her lips. She couldn’t get it to her mouth. I picked up a spoon and asked her if she wanted help. She nodded and I put a spoonful of soup in her mouth. After a few bites, her head lolled back and her eyes closed.

I pushed the nurses call button. Nurses came in and took her blood pressure. It was 77/51. They got her into bed and took it again. It was 161/90. They took her blood to test for an infection and then put her on antibiotics. They told me the test results would take a few days to culture. They took her to get another CT scan. The results were no different than last night’s scan. There was no neurological damage other than the Alzheimer’s disease. They took a urine sample for testing. Each time they came in they asked her questions.

“What’s your name?”


“What’s your last name?”


“Who’s the president?”


"Who’s that lady over there?” The nurse pointed to me.

“It’s my Mama!”

My eyes welled with tears. Whenever I’ve faced trouble in childhood and in adulthood, I’ve always wanted my mom. In better years, she was there to support me and help me get through life’s problems, big or small.

I want my Mom, now, but it’s painfully clear I can’t have her. I’m her Mama, now.