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I Want to Live
By Li Wei-huang
Translated by Lin Sen-shou
Photographs by Yen Lin-chao
I don't want to ask my doctor the chances of my survival, and I don't want to count how many days I still have. I don't want just six months--I want a much longer life. I want to take my children to the places I have been, and I hope their childhood will be filled with happy memories. I will do my best for my children and for the marrow donor--I must stay alive, because this is my best way of saying thank you to the donor.

--Lu Chiu-hui, trading company employee

 

Lu Chiu-hui was so busy that she would eat her lunch while working at her computer. At 6 p.m. she would pick her children up from school and take them back to her office, so they could do their homework and stay with her while she worked overtime.

Chiu-hui had studied international trade in vocational school and had come to this company of four employees when she was 18 years old. Within 12 years, the company had expanded to 300 people. She always rushed against time and helped the company make a lot of money. Being frank, open, and kind, she hit it off well with everyone around her.

However, Chiu-hui had been working so hard for so long that she felt she was about to burn out. When she consistently began feeling tired and couldn't sleep well, she went for a checkup. The doctor was surprised by the blood test results, and he advised her to go to a major hospital for further tests.

Chiu-hui checked herself into National Cheng Kung University Hospital in southern Taiwan the following day. A doctor from the oncology department told her that she suffered from acute leukemia.

"What?" Chiu-hui didn't comprehend the name.

"It's what most people call 'blood cancer,'" he explained.

When Chiu-hui heard the more common name for the disease, she was stunned. "Am I dreaming? How can this be?" she asked herself. Her sister and husband were equally taken aback when they heard the news.

Chiu-hui would never forget that awful day, October 19, 2000.

After 30 years of a healthy life, Chiu-hui felt that the doctor's unexpected announcement was ruthless and unreal. She was hospitalized the same day, underwent tests the next morning, and had her first chemotherapy in the afternoon.

She hadn't expected to stay in the hospital since she had only felt tired and had gone for a simple checkup. She worried about her children and her job. This was the first time she had taken time off from work since she started, 12 years ago. She became disoriented. Suddenly, her job, family life, traveling--all that she had considered practical and important--became irrelevant.

She received five chemotherapy treatments as well as radiation treatments. They continued until July 2001.

"When goose bumps appeared on my hands and feet, I knew trouble was brewing. I turned on a heater and a solar lamp, and put on a jacket and a winter comforter as though winter were coming. My hands and feet started shaking faster and my heart beat faster, making me very miserable. With my shaking hand I would try to put the oxygen mask on my face. The muscles on my body would be so taut that my body might break any minute. My neck and waist would be so sore and painful that I almost fainted. I told myself that I had to hold on."

"Then I would start to feel as hot as though I were in an oven. I would turn off all the heaters and turn on the air conditioner. I took off my clothes, socks and the comforter, but I still felt very hot. My temperature would rise to over 40 degrees Celsius [104], and I was very scared..."

Heaven didn't seem to be listening to how she felt. After suffering six months of chemotherapy, the doctor told her that the leukemia had not been cured.

Chiu-hui didn't want to deal with her sickness. Instead, she hid it and traveled to China with her husband and children. "I just wanted to spend more time with them," she explained. She was very upset because she didn't know if she still had a future. She wrote an e-mail to her colleagues and told them about her feelings after becoming sick. In response, her colleagues gave her a thick book full of their blessings. This book accompanied Chiu-hui through her tug-of-war with death.

 

I want to give up

Dear Chiu-hui: Everyone has to experience pain and suffering. You just happen to be experiencing it earlier than other people. You have to make it, all right?

Chiu-hui again underwent chemotherapy and experienced the same pain once more. Three chemotherapy treatments almost wiped out her will to live.

One afternoon, she had a fever of over 40 degrees Celsius. When her mother entered the ward and noticed that the whites of her eyes had turned up, she immediately called a nurse. After emergency treatment, Chiu-hui woke up to find tubes all over her body. She felt dizzy and thought that she would die. She vomited continuously. Her body felt fatigued. She asked for the date, because she thought it might be her last day.

At three o'clock, she thought, "Stop the treatments, because I want to give up!" Then she remembered her children always left school at four, and she didn't want them to miss their mother after school. She clenched her fist tight so that the nurse could extract a blood sample for testing.

Then her body seemed completely paralyzed and she was half asleep. Chiu-hui sensed that a group of people was working hard for her. She also felt that she was willing to give up her life, but she didn't really want to.

 

I am not sure I can win

Dear Chiu-hui: You are experiencing so much pain in the hospital. We're concerned about you and want to give you our blessings.

The chemotherapy failed to cure her leukemia, so a bone marrow transplant became her only option. Chiu-hui was able to find a suitable match in the Tzu Chi Bone Marrow Donor Registry, which stores records on over 200,000 potential donors of Asian ancestry.

Chiu-hui was fortunate. A stranger responded to her call and donated his marrow. Their tissue types matched, but from a strict medical point of view, the tiny antigens in the blood might not match, so before the transplant the doctor told Chiu-hui that there was still a possibility of rejection.

Chiu-hui knew that if she didn't undergo the transplant, she would only have six months to live. But if the transplant failed, she would lose her life even faster. "I don't want just six months of life, I want a much longer life," she thought.

Her desire to live left her no choice, so she chose the transplant, even though the chances of success were slim. "I felt like I was going to war, but I wasn't sure if I could win," said Chiu-hui. She admitted she was frightened by watching other patients in the ward die one after another, or by hearing the sounds of nurses running or the sounds of an emergency treatment. She wanted to lock herself up in a room alone to keep out any disturbance.

 

Keep walking

To our beloved Chiu-hui: We must go see the sunrise together!

While Chiu-hui was getting ready for the transplant, volunteer Kuo Shu-ching from the Tzu Chi Bone Marrow Donor Care Team came to see her every Thursday. Shu-ching was also a volunteer at the palliative care ward and oncology ward at the National Cheng Kung University Hospital. When Shu-ching had become familiar with Chiu-hui, she understood her anxiety. Fever and medications made Chiu-hui very dizzy, so she needed positive, encouraging words. Shu-ching often recited aphorisms from Master Cheng Yen's Still Thoughts, such as "Harbor good thoughts," or "Do not punish yourself with other people's faults," as a way to remind her to maintain good thoughts inside. Chiu-hui felt these thoughts were logical, so she would copy them down and share them with other people. Shu-ching also gave her other Tzu Chi publications to help her find spiritual support.

Knowing that Chiu-hui constantly felt depressed, Shu-ching would invite other volunteers to eat with her or chat with her to cheer her up. Shu-ching owned a beauty parlor, and when she noticed that Chiu-hui's hair had started to fall out, she used her professional skills to make Chiu-hui beautiful again.

Shu-ching said that her father-in-law had died of lung cancer in 1994, so she understood very well the torment of cancer patients and their families. Therefore, she became a hospital volunteer to care for patients inflicted with strokes or cancer. For the past decade she had been on duty in the hospital every Tuesday and Thursday. She had accompanied any number of cancer patients and their families and had experienced their ups and downs with them. Shu-ching said that she learned a lot from these patients.

 

I can't fall

Dear Chiu-hui: We're still waiting to pick grapes with you and your cute kids!

For the past decade, Chiu-hui's job, marriage, the birth of her children, and everything else had been very sure-footed and went as planned, but now her illness pushed her close to death and came close to ruining her life. She had to lie in bed and had no control over anything. Whenever the night came, she always felt very lonely. To avoid any distractions, she used sleeping pills.

Nevertheless, her children would come to the hospital and stay with her. [In Taiwanese hospitals, families are encouraged to stay with patients.] Sometimes they would sleep with her in the hospital and go to school the next day. Unless Chiu-hui had a fever, she always bathed her children and helped them with their homework. She also trained her seven-year-old son to buy boxed meals at a convenience store downstairs and to ask a clerk to microwave them.

To a sick mother, it was tormenting to have to give her children such training, but she did not know what the future might hold. Training them early made her feel better.

When she thought of her children, her will became indomitable. She constantly encouraged herself, "I have to hold on. Otherwise, what will happen to my children?"

However, Chiu-hui was very sorry for her mother, who was over 60 years old. She knew that Chiu-hui had no appetite because of the chemotherapy and because she didn't like hospital food, so every morning she bought fresh groceries and cooked them at home. Then she rode her bicycle to the bus stop, took a 40-minute bus ride, and then walked 15 minutes to the hospital to deliver the hot lunch. Her mother would then go home in the afternoon, because she didn't like to leave her 70-year-old husband at home alone.

Chiu-hui recalled that when she was a year old, her small intestine developed a problem and her mother used all of her savings to pay for an operation. Now that Chiu-hui herself was a mother and a wife, she felt bad that her mother again had to give so much to care for her.

Chiu-hui's mother suffered from degenerative arthritis, and her knees swelled up from traveling to see Chiu-hui every day. Chiu-hui thus hoped that she would get well soon so that she could spend more time with her mother.

 

My future is waiting for me

Dear Chiu-hui: Please get well soon, so that you can get all dressed up and we can go window-shopping together!

Chiu-hui heard that some patients wrote their wills before the transplant because they were afraid they might not make it. However, she didn't want to do this. She still had responsibilities and two children, so her transplant simply had to be successful!

One week before the transplant, she was moved into a bone marrow transplant ward to receive a high dosage of extermination therapy to kill off all her marrow and to completely remove all the cancer cells. For four consecutive days, she swallowed 30 pills four times a day. She became very frail and didn't have enough strength to move around. She started to wonder if she would make it.

On July 5, 2002, three bags of bone marrow arrived. Her relatives and friends stood outside her ward and watched the drops of bone marrow flow into Chiu-hui's body. They were more nervous than she was. When the transplant was over, it was after 11 p.m.

Everything went well, but Chiu-hui knew that this was only the beginning. The road would still be very long and painful.

She was in the ward for over a month. She didn't feel well and couldn't do anything. She tried to eat a little and drank 500 c.c. of nutritional fluid, but then threw it all up right away.

"Whenever I was in pain, I told myself that everything would go away. Just hold on a little longer and then my future would be beautiful. Otherwise, all the hard work would be wasted. I had been suppressing my feelings and didn't want to tell anybody about them. After I was transferred to a general ward, I became very emotional. My family cared for me, but I often rewarded them with my bad temper. I was afraid that my confidence would fall apart... Whenever I was alone, I would weep. I told myself that I had to be strong and work hard."

 

Discharged from the hospital

Hi toots: You're braver than all of us, because you're facing a challenge that none of us have ever faced.

After Chiu-hui was moved into the general ward, Shu-ching invited other volunteers to care for her and talk to her to help tide her over the hard times.

Chiu-hui had canker sores inside her mouth and eating was torturous. In addition, she would involuntarily tremble so hard that when a volunteer fed her lunch, it would take her two hours to finish. Sometimes when she held her pills in her hand, a dull look would come over her eyes because she was afraid to take the pills. The volunteers would coax her into taking the pills as if she was a child.

About a month after the transplant, Chiu-hui was discharged. She knew that some patients went home and died because, with their low immunity, they would contract septicemia, pneumonia, or other serious complications. Therefore, she often rested in her room to avoid contact with other people. Nevertheless, she had no strength to do anything, and she simply curled up in bed. She said, "It was like I was carsick, only it was for 24 hours a day."

Chiu-hui took anti-rejection pills four times a day, and just thinking of them was enough to make her sick. She remembers that if she burped, the stench of medicine would emanate from her mouth. And if she vomited out the pills, she just had to take them again.

During this period, she contracted a herpes virus that made her belly painful and itchy. She also constantly felt thirsty and had folliculitis on her feet. She had three biopsies to see if these problems were caused by rejection of the new marrow.

"I couldn't find a way to make myself comfortable," said Chiu-hui. Resting at home was more painful than the chemotherapy in the hospital. She even had no appetite for her favorite food: chocolate. And orange juice tasted so bitter to her...

 

I needed my children

Chiu-hui: We can hardly ever take any breaks in our busy lives, so take this opportunity and get more rest!

"I don't want to ask my doctor about the chances of my survival, and I don't want to count how many days are left for me. I know if I ask, I will get a number. Because I don't want that, I don't count the days. I only have my children in my mind. I want to take them to the places I have been, and I hope their childhood will be filled with happy memories."

"Today is the beginning of winter. I am hospitalized again because I have a fever. It is the 170th day since my bone marrow transplant. My two children are my strength. They can still grow up without me, but I can't live without them. You two have to wait for me to go home with you, and Mommy will also try to live!"

Her seven-year-old son once asked her, "Mommy, will you die? Will you go to heaven?"

Chiu-hui said it was heartbreaking to hear this, and she replied, "Even if I went away, I would become a star in the sky and look down on you..." She became choked up with tears and couldn't continue speaking.

After enduring this kind of suffering, Chiu-hui now always feels very fortunate if she can smoothly eat a bowl of rice and drink a cup of water. Even better is that she can stroll around and even ride her motorcycle.

 

I want to live

Dear Chiu-hui: Look upward, because heaven is blessing you with recovery. Look forward, and you will see a bright future waving at you. Look to the right and the left, and you will find us standing by your side giving you support!

One year after receiving the transplant, Chiu-hui's condition had improved so much that she wished to become a volunteer too. Shu-ching also hoped that Chiu-hui would get out of the house more often, so she invited her to help organize books at the Tzu Chi Tainan branch office. The work would not be very stressful, and Chiu-hui could also read Tzu Chi publications so she wouldn't become depressed.

Shu-ching also told Chiu-hui that she could make great contributions to society by encouraging other patients with her own experience so that they could steadfastly face their challenges. Chiu-hui agreed cheerfully to become a volunteer.

Through her recovery from blood cancer, Chiu-hui realized that a person's will is very important. If a person loses the will to live, no one else can help. Therefore, she often encourages other patients to find their hopes, which will help them move forward.

To the stranger who donated his or her marrow, if she ever had the chance to see him or her, she would thank the donor in person. She said, "The best way I can pay him back is to stay alive, so I won't waste his love."


......
 

Since returning to her office, Chiu-hui still faces the same workspace and the same tasks, but now she has a completely different perspective.

She thinks that her cancer occurred because of her heavy workload, stress, and negative emotions. Otherwise, why did she have leukemia when she had hardly ever even caught a cold? Therefore, she often tells her friends and other patients not to get fussy over trivial matters and not to give themselves too much stress. People have to stay optimistic. Right now she still works as hard as ever, but because of her new mentality, she is learning to relax and to find some pleasure in her busy lifestyle.

She has become more relaxed in life and less picky about time and money. She says, "It's fortunate that the whole family can be happy and healthy." She remembers what Shu-ching told her--to bless herself more and to commit herself to helping the needy. She believes that after she fully regains her health, she should volunteer to help others.

It has been two years since the transplant, and Chiu-hui believes that she is fortunate enough to be able to look back upon the whole thing. But she also realizes that there are still many blood cancer patients in hospitals waiting for a suitable donor. And they aren't sure if they are strong enough to wait that long.

She thinks for a moment and writes down in her diary, "It's okay to have regrets, but not without hope!"

 

 

The Moment They Met:
Lu Chiu-hui and Yang Wen-hsiao

By Li Wei-huang
Translated by Lin Sen-shou
Photograph by Yen Lin-chao

When Yang Wen-hsiao appeared on the stage in a white T-shirt and black trousers, Lu Chiu-hui, sitting in the audience, was already crying so hard that she couldn't see.

When the master of ceremonies announced that the marrow recipient could go onstage to meet the marrow donor, Chiu-hui immediately ran upstage and hugged her lifesaver. Yang patted her on the back and saw for himself that she was still alive and well. Two years of concern about her simply disappeared.

Chiu-hui's skin became darker after the transplant. Her blood type was originally O but has now changed to type B, the same as the marrow donor's. Her hair has also become thicker and darker. In addition, the pores in her skin have become bigger. While watching these changes, Chiu-hui had tried to create an image of her lifesaver in her mind.

With his thick, curly hair and robust body, Yang matched Chiu-hui's imaginary picture. Both of them happened to be of the same age; she was a mother and he was a father. When they spoke about the marrow donation, they felt as though they had known each other for a long time.

Yang donated his marrow and saved Chiu-hui and her family. Chiu-hui's mother was so delighted she put on makeup (something she rarely did) and came to Hualien with Chiu-hui to thank him in person. She held his hands tightly when they met.

Yang came to Hualien one day early, and that night Typhoon Rananim swept briefly across Taiwan. He said with a smile that the day he donated his bone marrow had also been a typhoon day. Thus, his memories of Hualien consisted of typhoons and bone marrow.

When Yang donated his bone marrow, it was the first time he had ever received general anesthesia. He explained, "I didn't want any more broken families." He recalled that approximately nine years ago, his wife had suffered a miscarriage. Putting their grief aside, the couple donated the fetus to a hospital for research, hoping to be of service to society. Therefore, Yang felt that even though he had lost a child nine years ago, donating his bone marrow was a chance to make up for what he had lost.

After the donation, Yang always thought about the recipient whenever he went to the hospital or heard an ambulance siren wail by. "How is the recipient doing?" he would ask himself.

Yang has now brought his blessings to Chiu-hui in person.