Barbie Perkins-Cooper, Author

Tag: esophageal cancer

  • In Memory of Walter W. Perkins, My Father — Mr. Sandpiper 1998


    Dearest Readers:

    Exactly 21 years ago today, Tuesday, July 6, 1999, I lost my father. Rushing to Sandpiper Convalescent Center in the late afternoon, I was pleased to show him his checkbook. He will be so proud of me to know he did not have to ask for his checkbook. Today, I have it balanced and ready for him.

    Parking at the side entrance, I grabbed my bag and rushed inside. It was dinner time at the center so I knew Dad and Dudley would be in their room eating dinner. Dudley was weak. He could not move his arms properly due to Multiple Sclerosis, so a nurse would be feeding him. As for Dad, he would be sitting on the side of his bed, eating. The umbilical cord feeding tube still attached to his body, although not in use. Dad insisted on eating food, not something dripping into his stomach for nutrition. His doctors had told him if he eats food, he will aspirate it and choke to death. “I’ll take that chance,” he said. “After all, most of my independence is gone. I want to eat, and I WILL EAT!”

    Walking carefully along the path to my dad’s room, I knew it was only a matter of time before Dad would breathe his last breath. Medical professionals told me to ‘be prepared.’ To which I responded: Just how can I be prepared? I’ve done everything I’m supposed to do. I don’t want to lose him, but I know soon this nasty, horrifying esophageal cancer will take him away.

    Dad was 84 years old. Once a tall, dignified man who sang gospel songs and quoted scriptures from the Holy Bible, no one would suspect during his marriage to my mother, he was an angry man. He and my mother spat words of hatred daily from their lips. Never did I ever hear them share any love for one another, or for me. In the public eye, no one saw the hatred they shared. The volatile fist fights. Shaking. Screaming. I cringe each time I think about the Domestic Abuse I saw so much within my family. At times, I wanted to run away, but where would I go? I stood as the referee — stretching my arms wide to stop their fights. Fortunately, after their divorce, Dad change his demeanor. He hugged me, and once I heard him say: “I love you.” I looked around. Shocked to hear him say those words of affection directly at me.

    Never did I see his anger after their divorce. Now, my Dad was a calm, loving man. So welcoming and kind! As for my mother. She changed — for the worse!

    Strolling along the corridor of the nursing home, I saw residents in wheel chairs, walkers and canes. One wrinkled gently woman with gray hair held a doll baby wrapped in a pink blanket in her lap. I had been warned if her baby slipped from her lap do not assist her. Let a nurse or a CNA (certified nursing assistant) help her. The woman suffered from Alzheimer’s Disease. She remembered a baby girl she had lost years ago. Now, she was caring for her.

    Such a heart breaking scenario just to walk inside a nursing home. The lonely, isolated residents are trapped inside what once was a productive and perhaps happy lifetime. Working hard to build a good life for their families, suddenly left to either be alone, or unable to care for themselves. Now, alone — many never receive family or familiar visitors. I made certain my father was not one of them. I visited daily, even when Dad would shout at me to “leave. I don’t want you here.” The only dates I missed was whenever my acute bronchial asthma left me weak and ill.

    Regardless how cruel he could be as he shouted for me to leave him, I stood firm. Dudley struggled to tell me he was ‘mean’ to me. I laughed. “Dudley, it’s ok. I can take it. He’s my father.”

    I loved him. I wanted to visit with him, to embrace him and his love for one of his four daughters. I was only one. My sister, Dolores, and her family, came to visit regularly from Georgia. The other two sisters were “Too busy. They had lives to live.” How I wish they could see what I saw after we moved him to Charleston. Gone was the hatred. Violence. Shouting, and anger. Replaced by a man who smiled, laughed and told me He loved me. How I cherished hearing those words.

    He welcomed my oldest sister, Dolores, giving her a hug. This was our father. A new man who was struggling to live as esophageal cancer threatened his body.

    Today Dad will be so proud of me. He won’t ask for his checkbook. I’ll give it to him quickly so he can see, his money is safe. I’ve paid the nursing home. I’m not like my mother. I’ll not spend his money.

    Headed towards his door, I met one of the nurses. She was pushing an oxygen tank in the direction of Dad’s room. “Uh-oh.” I said. “That isn’t good for someone.”

    She didn’t answer me. Placing my hand on Dad’s closed door, I noticed her hand met mine. She shook her head no.

    Oh no. Not today. Please God. Not today. I screamed. Someone placed an arm around my waist forcing me to turn away, leading me to a chair.

    Where’s my phone? Oh. I left it in the car. I need to call Phil. He’s on his way home from New York.

    I placed my face in my hands, to cover the heartbreak of my tears. I knew without a shadow of doubt, my father was dying. I could do nothing to stop it. I prayed. Please God. Give me strength to let him go with dignity. I cannot and will not disobey his wishes. Years ago while we dined at a restaurant, Dad looked at an elderly man walking with a walker, struggling to remain upright.

    Dad told me when the time comes, please let me go with dignity. Do not allow them to resuscitate me. Promise me, you’ll let me go with my dignity.

    I looked at the man. His son helped him to move. A tear danced in my eyes. “Dad, I promise.” I touched his hand, squeezing it with loving gestures.

    Moments seemed like hours as I listened to the nurses begging my father to come back. “Mr. Perkins. Mr. Perkins. Breathe. Your daughter is here. Breathe…”

    Someone touched my shoulder. “Barbie, if you say the words, we can bring him back.”

    “No.” I said. “I promised him. He’s a DNR. I cannot let you resuscitate him. Just let him go. He’s at peace. Let him go!”

    “Your husband just landed. He’s on his way here.”

    When Phil arrived, I fell into his arms. A nurse wanted to know if I wanted to say goodbye to my father.

    “Yes,” I muttered.

    I remember walking into the room. Dudley mumbled, “I’m so sorry.” Dudley and I had developed a way to communicate. I walked over to him. Dad’s curtain was pulled so his body would not be seen.

    I patted Dudley’s bare head. “Thank you,” I said, tears pouring from my face. “You were such a great roommate and friend. Truly the odd couple. Thank you.” I kissed him on the forehead. He laughed.

    Dad’s body felt like dry ice. Clammy. Cold, almost frozen to the touch. I kissed his bald head and his cheek. I love you, Dad. I will never forget you. Go in peace to see your family and your identical twin brother Lewis. I love you. I love you and I will miss you, but you will always be in my heart. Always.

    Exactly 21 years ago to the date, July 6, 1999, I recall everything on that date as if it was yesterday. Words cannot describe how much I miss him. His laughter. His Shakespearean, boisterous voice. His singing, and trying to teach me to harmonize and yodel. The compliments he gave me during the holidays. He enjoyed our “fancy dinners” and fun. I focus on the good times. The times he and I traveled to Georgia to see family. The moments he shared with me about how much he missed his identical twin brother, Lewis. Until Lewis’ death, both of them were inseparable.

    Such good memories. Yes, I could focus on the domestic abuse I listened to in fear, serving as the referee, telling both of my parents If you want to hit someone, or hurt someone, just do it to me. Not each other.

    Years ago, Dad and I talked about those times. He hoped I would forgive him. And forgive him, I did. After all, I loved my father. He was the one who gave me strength. He taught me courage, and he always said for me to stand tall and voice my concerns about the world. “Don’t look back on life,” he said. “Move forward!”

    One thing I will always remember is the day he was on TV, being interviewed after he was elected Mr. Sandpiper. The TV announcer asked him if he was a writer. Yes, he was. He was a poet and biographer. He laughed. “No. I’m not the writer in our family. My daughter, Barbara…now she’s the writer!”

    Walter W. Perkins, my father, although today is the 21st year of you leaving this earth, I want you to know, you are still in my heart, even with the tears pouring down my face. I love you and miss you terribly.

    In memory of my father, Walter W. Perkins, December 19, 1914 – July 6, 1999.

  • Chattahoochee Child – Walking Into the Fears of Cancer…

    Chattahoochee Child – Walking Into the Fears of Cancer…


    Dearest Readers:

    Periodically, I post a few stories from the book, “Chattahoochee Child” — my latest work-in-progress. Hope you enjoy!

     

    The morning my father and I learned to forgive each other started like most mornings in Mt. Pleasant, South Carolina. Resting motionless in bed, he reminded me of a frail injured bird with crippled wings. His body was thin. His skin the color of mustard. Peach fuzz of a cotton soft beard kissed his face. My heart broke for him. My arms ached to reach inside his weakened body to pull the cells of cancer away.

    Dad was rebelling after the diagnosis, stating in a firm voice that he would not shave his face UNTIL he was given the freedom and luxury of eating food. Meanwhile, the beard continued growing.

    Although it was the holiday season of 1997, I could find no happiness or excitement in decking the halls or decorating a Christmas tree. The patriarch of my family tree was terminally ill, destroying my belief in the humanity and meaning of life. Why was it always the good people who suffer the most? Life just wasn’t fair.

    During that Christmas holiday spent inside four cold walls of a hospital room, I remember staring outside, watching cars speeding by, ignoring traffic lights. I glanced at Christmas lights blinking off and on, counting the precious moments of life we, as adults, get locked into believing will be forever.

    “How much longer do we have?” Suddenly, I shared an unspoken conversation with God as I looked up into the skyline asking why this had to be.

    On that particular morning, Dad’s forehead was hot to the touch. I took his temperature. 103.  Sighing, I reached for the phone near his bed. “I’ll get the nurse to check your temp,” I said.

    He watched every move I made. “You’re a good daughter,” he said. “I love you.”

    I stopped dialing the phone. “I love you too,” I said, realizing he had never expressed those words before. His generation did not believe in showing affections and I was moved to the point of tears.

    “Barbara,” he said his voice only a whisper. “I’m sorry for everything.”

    I bathed his forehead with a cooling wash cloth, “No need to be sorry for the past,” I said. “You were the parent. I was the bratty, rebellious teenager.”

    Dad’s facial muscles struggled to smile. “You always were stubborn and persnickety,” he said as he coughed.

    “Just like my father,” I teased. “You rest. We can talk later when you’re stronger.”

    “I’m glad you’re here. I can always count on you, even when things are difficult.”

    “All of that’s in the past,” I said, brushing a blonde strand of hair from my face with an apricot manicured nail. “The past is history. The future a mystery. This moment is a gift, and that’s why we call it the present.”

    Dad’s eyes fluttered. “I’m tired and sleepy.” He said.

    “You close your eyes and sleep. I’ll be here when you awaken.”

    November, 1997 until July,1999, were years of change, heartache and indescribable fear as I slowly watched my dad melting away from me from the effects of esophageal cancer, the Percutaneous Endoscopic Gastrostomy [PEG tube], commonly referred to as a feeding tube and chemotherapy radiation. I watched his tall, sturdy frame slowly bending into an emaciated body that could no longer fight or walk without assistance. It was truly the most painful time of my life.

    After the week of Thanksgiving, 1997 my dad phoned, telling me he was a bit nauseated and thought he had cancer. I snickered. My dad did not have cancer. He was the picture of health. He took care of himself, walking daily, eating healthy foods and he lived a good life. Never drinking or smoking. No, Dad doesn’t have cancer. Not my Dad.

    The next morning I took Dad to the Emergency Room at Roper Hospital in Charleston. For over eight hours, we sat while medical professionals took blood samples, x-rays and scratched their heads. Deciding to refer Dad to a gastroenterologist, we left the hospital, got a bit of dinner and I drove him back to his apartment. During dinner, he struggled to swallow his food. He apologized for taking so long to eat. When finished, over half of his meal remained on his plate. He did not request a take-out box. I suppose I knew something was wrong, I just did not want to admit that my dad was getting older and weaker each day.

    In early December, Dad and I met with the gastroenterologist. An endoscopy was scheduled for the next morning. I phoned my boss letting her know I would not be at the office the next morning. I detected a bit of disappointment with her but remained firm. After all, my dad needed a test. All of my interviews and presentations could wait. Corporate America simply had to understand. My family was important to me.

    The next morning, feeling confident Dad’s tests would be negative, I sat alone in the waiting room of the hospital, watching people passing by in a rush, reading newspapers and magazines, and sitting. How I wish I had remembered to pack a book or magazine. I watched the clock tick away. One hour. Two hours. My stomach growled. I hadn’t eaten anything and it was almost lunch time. My cell phone rang, but I couldn’t answer it since the hospital did not permit them to be used while waiting. And so I waited and waited.

    Moments seemed like hours. I glanced up at the clock again, stopping to notice my dad’s doctor was approaching. His eyes did not look at me. He held his head down. He sat down by me.

    “We found the problem.”

    “Oh. He’s just not eating properly? Isn’t that his problem?”

    “No. Your dad has cancer. Cancer of the esophagus. Terminal cancer. I’m sorry to say it, but he probably has less than six months to live. He needs a PEG tube so we can get nourishment into him again.”

    I sat motionless. Nothing was fazing me. My mouth flew open and I felt dizzy.

    “Are you all right?”

    “My dad has cancer. You’re saying my dad is dying? My Dad? This can’t be. He’s taken such good care of himself. You must be mistaken.”

    “Have you noticed how thin he is?”

    “Yes, I suppose. I did notice he didn’t eat much at Thanksgiving. I’ve been so busy at work. I guess I just didn’t pay enough attention.”

    I knew my speech wasn’t making sense. People were passing by me, and all I could think of was the dreaded word – cancer.

    I thanked the doctor. When he left, I turned my phone on and called my husband.

    “Can you…can you please come to the hospital? Please?”

    Garrett knew me well. When he arrived at the hospital, I fell limp in his arms. The tears I refused to cry suddenly poured out of me and I screamed. People stared at me, but I didn’t care. My dad was dying. Cancer. Cancer. CANCER.

    The next few days were a blur to me. I returned to work, although my heart wasn’t there. All I could think about was my dad and the approaching Christmas holiday season. How could I possibly celebrate Christmas while knowing my dad is battling cancer? What if he chose not to fight cancer?

    My prayers were answered one afternoon after a stressful day at work. I walked into my dad’s hospital room. He was resting while watching TV. An intravenous solution was attached to his arm. I touched his cold, resting arm while watching the IV solution of chemotherapy slowly dripping into his body. An amber colored bag covered the solution as it dripped…dripped…dripped ever so slowly into the veins of my father.

    His eyes opened slowly. “Chemotherapy,” he said. “The doctors think it might help me live longer.”

    My hand squeezed his and I felt his icy cold skin. “Are you warm enough?” I asked.

    “Yes, I’m fine. You stop worrying about me.”

    I squeezed his hand again. Tears were dancing in my eyes and I turned away. I did not want my father to see me crying. On that day, I recognized a new closeness and bonding between us. Gone was the angry, bitter-tongued father of my youth, replaced by a kinder and caring man who trusted me.

    “We’ll fight this together, Dad.” I said, looking deeply into his eyes. “Together. I will be here for you every day. I love you, Dad. Together we will fight.”

    Dad squeezed my hand. “You’re a good daughter,” he said. A tear fell down his face. “Will you wipe my eyes with a tissue. They’re watering.”

    Still the tower of strength emotionally, Dad would not admit he was crying. I wiped his eyes and kissed his forehead. “I love you, Dad. Together we will beat this monster of cancer.”

    During the holidays of 1997, I watched my dad battle chemotherapy radiation with courage and faith. I visited him daily and with each visit, we bonded. Before leaving at night, I would bend over to kiss his forehead. He whispered, “I love you.” Something he never did before cancer knocked on his door.

    Cancer changes people. Suddenly life appears to fall into place. The little things in life become important again. No rushing around. No deadlines to battle. No appointments to break, or arguments to tolerate. All that is important is that one special, precious moment of life. Even when Dad had a rough day, we made the best of it. We strove to see the sunshine and sunrise. Life appeared to be simpler, with one exception. Daily I prayed for God to give Dad and me just one more day. One more day to touch his hand, one more day to kiss his forehead and to whisper three simple, caring words that gave me strength. “I love you.” Eight precious letters of the alphabet that guided me in the mornings, during the unexpected stress of each day, and covered me with a blanket of warmth at night. “I love you.” We expressed those words daily. Every day and moment we shared was precious.

    After three chemotherapy treatments Dad was so weak, his blood counts so low, the doctors decided his body did not have the strength necessary to receive additional chemotherapy or radiation treatments. His throat was extremely sore, creating more difficulty with swallowing. The medical terminology I was learning educated me about esophageal cancer and other words I hadn’t learned before cancer knocked at our doors. Dysphagia, the inability to swallow. Skilled medical care – meaning 24-hour medical care and, of course, the detested PEG tube. What Dad and I described as an umbilical cord. Since he had a PEG tube, we decided it was necessary for him to reside at a convalescent center. He made friends at the nursing home and adjusted well. I visited him daily, praying for a miracle.

    Our miracle granted him additional time with us although his quality of life weakened. He could not swallow food without regurgitating it, so the PEG tube was used, against his wishes. Slowly every quality of his life ended. The ability to enjoy food. The strength to take daily strolls without the assistance of a walker. The independence to live alone, without the assistance of skilled medical care. Father Time was slowly ticking his life away. Tick. Tock. Tick Tock, until he was almost a vegetable lying in his hospital bed.

    On July 6, 1999, I arrived at the nursing home thrilled that I had his checkbook in my handbag. Dad kept close tabs on his checkbook and always asked about it. I was pleased that I had balanced his checkbook, and paid the nursing home for another month of nursing care. I was confident he would be pleased that he did not have to ask for his checkbook this month. I was prepared. Approaching his room, I turned my head, acknowledging a nurse. She was pushing a portable oxygen machine. “Oh, that isn’t a good sign,” I said to her. She did not acknowledge me, but followed next to me. Placing our hands on the door of my father’s room, I exhaled. The nurse suggested I wait outside. I was told I could not enter. I knew the time had arrived, and although I had prepared for this moment, his loss tore into my heart and soul. A woman I had never seen before took my hand, moving me to a chair. I was hysterical. She sat next to me, holding my hand until my husband arrived. I have no idea how he knew that Dad was dying. Someone had called him. Much to my surprise, that someone was me, although I do not remember making a phone call. All I can retrieve from that ‘moment’ was the strange, kind woman holding my hand, whispering words of encouragement to me.

    The next morning, I drove to the beach, before sunrise. Standing along the shore, I knew Dad was at peace, and in time, I would be thankful that he had the final say. Walking along the shore, I noticed a sandpiper, appearing to follow me. Was this a sign? I would like to believe it was. The tiny sandpiper running next to me was a symbol that Dad and his spirit were now united with his twin brother and his family. Truly, it was a beautiful sunrise on that morning, July 7, 1999. The first morning of my new life as an orphan.Never would my dad and I harmonize a gospel song. Never would we spell vocabulary words, or whisper ‘I Love You.’  A fresh new morning of life for me, although inside, I felt nothing except a deep, debilitating grief.