Taiwan Hospice Headline: Nurse Makes a Difference

I've been serving as the editor for the Taiwan Hospice Headline for the last couple of years. I just asked the Chinese editor-in-chief, Yi-rung Chen 陳怡蓉, if we were posting the articles online (I wanted to provide a link to my blog). She answered: "We didn't set up these hospice issues online. But we will be post it on our foundation's Web site in the future." She encouraged me to put up some of the articles on my blog, which I think I will do, as they are meaningful. The address of the Taiwan Hospice Headline is: No. 45, Min-sheng Rd., Tamsui, Taipei, 251, Taiwan. The Web site is www.hospice.org.tw. The phone number is 886-2-2808-1130. The fax is 886-2-2808-1137. Their Email is hospice@ms1.mmh.org.tw

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The Story of Cancer Fighter - Chien-hao
Jia-Rung Wu, Nurse, Liou-ying Branch of Chi Mei Medical Center

Preface: The Beginning of the Story
I had known Chien-hao for almost a year. As his nurse, I took care of his wounds and watched his young body ravaged by cancer. He had a strong spirit and the will to keep going, and I admired him. In the beginning, Chien-hao refused to go to the hospice ward, even though he knew his body could not stand additional rounds of progressive chemotherapy. His reluctance to be transferred to the hospice ward meant he needed to accept the fact he was in a hopeless situation, that he was waiting to die. But he seemed to prefer it that way.

The hospice team of the hospital continued to reach out to him, trying to clarify the meaning of hospice care. After a while, his outlook seemed to change. He chose to be transferred, and to receive hospice care in the hospice ward. When he arrived, the nurses could spend more time addressing his wounds according to his needs. No matter whether he was enjoying a comfortable bath or looking at scenery outside the window from his bed, he seemed satisfied with the hospice care he was receiving.

When I saw the general call “The first cancer fighter selection”, the name “Chien-hao” jumped to mind. Now, he would have a chance to tell his story. When I handed him the regulations, however, he hesitated, worrying about his writing style. With the encouragement of both Huis-hsia, an attendant auntie, and myself, he finally agreed to give it a try. Huis-hsia recorded all of the interviews conducted by Wei-chun Lin, the psychologist of hospice ward, putting down his words in the following report: “The Story of Chien-hao”.

Content: The Story of Chien-hao

As far as I can remember, perhaps from the age of four, I have had a strange disease called “hand dermatitis keratodermia tylodes palmaris progressiva”. My four limbs looked different. The keratin on my hands and feet kept on growing, forming a callus. As a result, my nails could not grow normally. My fingers looked like they could be ET’s. Being just a child, I could not understand why this was happening. When I entered elementary school, many of my classmates treated me disdainfully. A feeling of inferiority was firmly implanted in my mind.

Though I was looked down on at school, my mother and brother always treated me well at home. My father, on the other hand, wondered what he had done to be stuck with a disabled child. He held me in contempt and often scolded me. When relatives and friends came to my home, I had to stay upstairs, so the guests wouldn’t see me. In a normal family, members have meals together, but that was not the case in mine. My father detested me so much that I was only allowed to eat the leftovers after the family was finished. My parents earned a living by farming. They had an orchard. When it came to work, my father suddenly disregarded my disability. He insisted that I go up the hill and harvest mangos with him. I could only hang the basket on my arm and slowly pick the mangos. The baskets that I harvested were usually too heavy for me carry. 

Physical inconvenience was a bitter pill to swallow, but I gritted my teeth and endured the pain. I didn’t hate my father. I just wanted to show him I was trying. I longed for his approval and love.

To me, the most terrible pain was not the contempt I received from others. Depreciations were a common occurrence in my life. It was the burning pain that resulted from keratodermia. The itching was more unbearable than the pain. It itched so much that I couldn’t help but chafe my limbs against the cement floor or the edge of the stairs. Even when I was bleeding, the itching still wouldn’t subside. I rubbed up against things so often that the legs of tables and chairs in my home became worn. Thick calluses formed on my hands and feet. I tried to cut them off with a knife, but had trouble with this as I had couldn’t hold it in my stiff deformed hands. Bleeding was routine in my life. Nights were what I dreaded the most. The pain, itchiness and loneliness corroded both my mind and body. It was too painful to sleep. The only thing I could do was to hit my head on the wall. And I would literally do this, until I reached a state of dizziness that allowed me to fall asleep. If I woke up late in the night, I simply chafed my suffering limbs and hit my head on the wall, until I fell asleep again.

During the first 20-odd years of my life, I had no friends. I had neither the courage to make friends nor the conditioning to keep up with other youngsters. So I spent all of my time with my mother, brother and a younger cousin, who was over ten years younger than me. Sometimes I wished I had a friend to talk to; I was sick of facing problems alone. I lived without dignity. I fought against the disease around the clock. 

My brother got married and had his kids of his own. I envied him so much. I remember I would sneak off on the family motorcycle to an Internet café. The Internet allowed me to mask my deformities, so that I was able to make “friends”. I could pretend to be a healthy and active person, even if I was really suffering.

Something changed two years ago. There was an ulcerated wound on my right ankle, exuding a foul odor. I put on socks and stayed in my room. I didn’t want my parents to know about it. One day, my brother came into my room. He smelled the foul odor and saw me resting, with my right foot set in an awkward position. He called mother, and she sent me to the Youn-kang branch of the Chi Mei Medical Center. When my socks were taken off, all doctors and nurses were stunned.

My right foot fell off my leg along with the sock, with only a few strands of flesh keeping it from being completely severed. Blood and pus flowed all over the floor. One doctor told my mother that I would have to undergo an amputation. It hurt so much that I had no choice but to accept. It had never occurred to me that the amputation would be made at the knee. Not long after that, my knee was also ulcerated. The wound was so deep that it made a hole, which the nurse could pour normal-saline-solution through when she helped me to change the dressing. I could see my bone in the hole, and the fungus that was infecting the bone. Soon, my other foot was also festering and in need of amputation. The doctors transferred me to the hematology department of the Liou-ying branch of the Chi Mei Medical Center. The hematologist told me that the biopsy read “malignancy melanoma” and that I would be receiving chemotherapy. My wound became infected during the treatment course, resulting in yet another amputation. My legs had been cut down in size three times. But the real pain was only beginning.

In February or March, an ulcerative hole emerged in my groin. It was three centimeters in depth and six to seven centimeters in width, and exhaled a foul smell. Every time the nurse changed the dressing, pus oozed out. I sometimes had a fever, and was covered in a cold sweat. I wondered why God wouldn’t just let me go, why He kept my agony instead.

The hole grew bigger and bigger, so that it stretched almost to the femoral artery. The nurse helped to clean the wound, again and again. She tried different ways to care for it, hoping to slow its growth. Nothing seemed to work. I was constantly in and out of the hospital. My mother was so exhausted that she called upon an attendant nurse to share in the burden. The attendant auntie helped to change my clothes several times a day, which was necessary as the thick gauze would become sopping wet after a few hours.

One day, I was eating dinner with the attendant auntie. I was leaning against the table on my bed when I felt something warm on my bottom. “Auntie,” I cried, “I’m bleeding!” When she removed the table, both of us were at a loss. Auntie rushed to the nurse station, shouting that I was bleeding heavily. Several nurses rushed into my room and pressed upon my wound. I was very weak and sweating, and my blood pressure had declined. I was immediately sent to the intensive care unit for emergent treatment. Auntie asked my mother and brother to come to the hospital. I didn’t know that I was about to die. I was still conscious, crying for them to stop the bleeding. I was then sent to the department of medical imaging to find the exact spot of the bleeding; and an artery embolism was performed to stop it. But the wound continued to grow. Soon, it was larger than an octavo, and my iliac (or loin) bone was eroded to the point of breaking. The surgeon removed my testicles because they were in a state of necrosis. No one could have imagined how terrible the wound was going to get. The skin was torn and the flesh was gaping open, filling the air with a heavy putrid odor. At the beginning of August, the tumor began to eat my intestines, and stool flooded out from the wound. “Oh God,” I protested, “what more can you do to me?” I had once been 180 centimeters tall. Now, after repeated amputations and ulcerations, I weighed only 30 kilograms. My stature was less than half a bed length.

The wound had to be cleaned every four hours. Unfortunately, stool continued to flow into it. The wound, a mixture of blood and flesh, became even worse due to an infection. Three days later, my doctor consulted a surgeon, Dr. Tsai, and it was determined that he would perform an enterostomy on my left abdomen. By this time, the stool could only be relieved via a plastic bag attached to my stomach. Beneath the ulcerated flesh on my right side was an artery that could burst at any moment. A 16-stitch suture separated the wound and the plastic bag. I wondered why God had provided me with such a fate. Why was it me that should pass through the crucible? Hadn’t I been through enough?

But I was still alive. Resting on my bed, staring at the clouds on the other side of the window, I wondered if I would ever see the sun rise again. The next day arrived, and I understood that I had once again met the challenge. Though physically handicapped, I felt my mind strong; and I knew I had the ability to be stronger than those around me.

Postscript: The End of Story

The day Chien-hao left, I was at his side. I saw a change in his breathing pattern, and that his body temperature had dropped. He waved both of his hands and looked unresponsive even though his eyes were open. The room was filled with a wired atmosphere and everything was quiet. In the final moments, Chien-hao’s mother held me and cried. She said “Thank you for taking care of him”. My heart pounded, and I tried to hold back the tears. She held on to his thin deformed hand: “You have now recovered from the sickness. At last you can rest in peace. Do not concern yourself with me. I was so sad about what you were going through. Thank God, I was able to be with you when you embarked on you final journey. You were not alone.”

Chien-hao’s story was late for the first cancer fighter selection. After discussing it with Wei-chun, we decided we needed to share it, and members of his family agreed. We hope other terminally ill cancer patients will be inspired by Chien-hao. The life ahead of us may not always follow a smooth path. Most of the patients we take care of are not in good shape. During the treatment process, they will feel pain and uneasiness, and face both obstacles and dismay. They will be forced to look at the frailty of the human condition close-up, and to realize there are things none of us can control.

Chien-hao has also inspired me – I have learned much from him. My job has also taught me to respect and cherish life. I hope that those who lead lives limited in time can find the maximum value. I am fortifying myself, so that I can do more to provide quality care to those that are suffering. I will do the best I can for their families as well.