Talk Shows & Stories : Featured Stories : Grace

Grace: Colon Cancer (English translation of Mandarin-language recording)

Recorded June 26, 2002

Listen With 25 minutes, 04 seconds. (Mandarin-language recording)

I am Grace, Li Juen Lee. I am 64 years old. Currently, I live with my husband in South Bay, in northern California. My children are all grown up. I am a survivor of colon cancer. The difference between my story compared with others in general is that: I was the one who detected my own colon cancer. My doctors kept on telling me, "No problem." What happened? Let me share my experience with you.

Doctors Underestimate the Problem

In the 1980s, I had worked as a researcher at a Medical Center for seven years, so I was familiar with general medical knowledge. In the 1990s, my husband and I returned to Taiwan for work reasons.

In the beginning of 1996, my mother was ill and hospitalized. One morning after breakfast I went to the restroom. While on the toilet, the hospital called, so I got up in hurry and rushed to answer the phone. I felt that I hadn't finished my bowel movement. And then I went to the restroom again in that evening. At the time I didn't think anything was wrong, but strangely, after that day, the frequency of my bowel movements seemed to increase daily. This had never happened before. I used to have a very good, routine pattern with my bowel movements. I ate breakfast, went to the restroom, and then got ready to go to work. So I felt a little strange about this. But I was working very, very hard at the time, and my mother was sick, so I didn't have very much time for myself.

Later on, besides the fact that the frequency of my bowel movements had increased, I also noticed that the shape of my stool had changed too--it was thin and a little flat. I was worried that maybe something was growing in the bowel. Also around that period of time, when my friends saw me, they kept asking, "Grace, why are you so thin? You are getting thinner and thinner." I was alarmed. This wasn't a good sign. Also, I wondered--weren't these symptoms of colon cancer?

Then my mother passed away. Many things needed to be taken care of. After things settled down, my symptoms persisted, so I went to see a doctor. I told the doctor about my symptoms and my concern. The doctor ordered a barium enema x-ray exam. When the results came back, he said, "No problem. There was something on the wall of the bowels. It was called "diverticulum." It could be treated with medication.

After I took the medication for over a month, nothing had changed, so I went to see another doctor and took different medications, but had no improvement after a month or two. I usually come to California in June of every year, and I still kept in contact with my family doctor in California. So I thought, when I return I should do a colonoscopy, and I told the doctor to schedule an appointment.

I went to see the doctor in early July, but when he reviewed my Taipei exam report, he said, "You are all right; you have already done the x-ray, so why do you want to see a gastroenterologist and have a colonoscopy?" He said there may still be some risk in having a colonoscopy--a problem might occur during the procedure. He said, "You don't need one," so he did not refer me to a gastroenterologist. I only had one month in the United States before I returned toTaiwan. There were many things waiting for me to take care of. I had insisted on having the colonoscopy, but the doctor wouldn't allow it.

Following Instincts: Urging a Correct Diagnosis

Finally I went to my coworkers at the Medical Center in which I worked for before. I asked them for a referral to a gastroenterologist. After this doctor checked me, I told him that I was worried that maybe there was a tumor in my bowel, and that I could not accept that everything was fine. From the time of my discovering the change of routine in my bowel movements to the time when I saw this gastroenterologist, it had already been three months, and I had felt a dull pain in my lower abdomen. The doctor agreed. He said, "No matter what, we should do a colonoscopy to see." He arranged for me to have the exam right away.

After the colonoscopy, the picture showed that there was a tumor in the sigmoideus colon. He said, "Grace, regardless of whether the tumor is malignant or benign, we need to have it removed."

On July 31, 1996, I had surgery to removed six inches of my colon and the tumor. Around the insertion, they also took out 19 lymph nodes and sent them to the lab for testing. The test result showed that the tumor was malignant; so colon cancer had been confirmed. Among the 19 lymph nodes, one of them appeared to be positive. The doctor said, "You don't have to have chemotherapy, but just to play it safe, I think you'd better do it." Fortunately the tumor had not spread to other internal organs, so three weeks after surgery, I started my one-year chemotherapy treatment.

As I mentioned before, I lived in Taipei at that time, and I routinely commuted between Taipei and California. So I needed to do my treatment in both places. Fortunately I had two very good doctors, one in Taipei and the other in California. They cooperated very nicely, and I was able to continue my one-year treatment without interruption.

A Good Patient Rides Out the Chemo Storm

About chemotherapy--the process of chemotherapy, mine was a very unusual case. I was a good patient and I would follow the doctor's instructions as long as they sounded reasonable. I had my surgery at the end of July, and three weeks later, we started chemotherapy. I had the initial treatment in the United States. Initially I had to do it continually for five days. The drug we used was 5FU [Fluorouracil]. The doctor said this drug was rather mild, so the reaction shouldn't be too intense.

After I finished the five-day treatment, it was fine. There wasn't any discomfort and I felt just fine. Many people said this chemotherapy is difficult and very painful. I didn't feel too bad, and I was all right about it. After five days of treatment, I needed to wait another three weeks before starting the weekly injection.

At the time, when I was in the United States, I was supposed to have treatment for five days. I stayed at a good friend's house who lived very close to the hospital. One afternoon we returned home after the treatment. I sat down and rested. The phone rang and I went to get it. I took a few steps and just wanted to hand over the phone to my friend. Then suddenly I passed out. When I woke up, I was covered with blood, because I had fallen badly; my teeth had carved a hole in her wood floor, a big mark. Of course my teeth were broken, and my whole face was covered with blood oozing from my chin. Later I discovered my white blood cells had dropped to 700, a very dangerous condition. Because the white blood cell count was so low, I didn't have any immunity. And then I had a fever and went to the hospital again. The doctor gave me a shot to increase my white blood cells and help me to recover.

Because of this incident, finally both of my doctors agreed to reduce the dosage of medication. During my entire treatment process, I was very uncomfortable because of nausea, almost everyday. For example, right after treatment, I needed to rush to the bathroom and throw up. This reaction--both doctors said that among all their patients who have received 5FU injections, they had never seen anyone having such a strong reaction as I had.

During my treatment period, I was working as usual. It was 1996 when I was in Taipei with my husband. My husband worked in Shin-Ju. He didn't come home every day, so I thought that during the treatment period, if I didn't go to work and stayed home, I would only keep thinking: "I am a patient! I am a patient!" So I thought I'd better do what I needed to do; in that way I would be distracted from the illness.

Every Wednesday I had chemotherapy. When I returned home after work, it was the most difficult time for me. Then I understood what "dead tired" really meant. I felt nauseated and my body was boiling with fever. I felt bad, very bad. It was like when I returned home, I would break down entirely.

So my condition was getting worse and worse. I had only completed three months of chemotherapy. I could not bear it already, and I thought, why do I have to try so hard? Even if I do complete the treatment, no one can guarantee that I will be cured and will never have it again. What does it matter if I live a little shorter?

So I told the doctor that I didn't want to go through with the treatment. I said it was really too painful for me. And my doctor told me, "Grace, you have only done this for three months. If you stop the treatment now, all your suffering will be in vain--with nothing to show for it. If you could at least persist for six months--when it reaches the sixth month and you still feel this bad, or you don't want to do it, then I will consider other treatments or other methods. But I can't allow you to do that now."

He also told me his own story. He said several years ago, he got really sick. Because he could not tolerate the treatment, he wanted to give up, but eventually he made it through. He said, "After you finish your treatment and see that your health has been regained because of the treatment, you will feel that it has certainly been worthwhile." So he encouraged me and told me to continue the treatment. Because of what he said, I felt that I did not want all my prior suffering to be purposeless. So I decided in time, there would be nothing to hold me up.

Making the Most of Every Minute

So I adjusted my attitude and my way of thinking. I thought about how to pass through this difficult time. When I was doing my treatment in Taiwan, I saw many patients walking in looking sad and worrisome. Of course, getting sick is not a happy matter, but I thought there was no need to make it worse for yourself. Because I felt that getting sick was not because--like we had done something terrible. We shouldn't mistreat ourselves. We could still make ourselves a little happier, right?

So each time when I went to have treatment, I joked around with other patients. Of course, some didn't respond. But I felt that we were all like friends, because we saw the same people every week. I was joking around with the nurses and the doctors all the time, and when they found out that I had returned from the United States, they said, "Can you teach us English?" I thought it wasn't a bad idea. In Taiwan, it took a longer time to do the chemotherapy session. Why? Because besides injecting the drug, they also gave you glucose, and 250cc of glucose took a long time. You had to wait, drop by drop. I thought that sitting there staring at each other was rather annoying; so since they wanted me to teach them English, I said to them, "Good, I will teach you some everyday English. I will write it down for you, but you have to study seriously. Each week I will give an exam."

They were very happy. Every week I got there 10 minutes early and taught them before they started working and between changing drugs for patients. They would come over and ask me questions. I took advantage of the time in which I was receiving the injection by writing down the lesson for the following week. So I made myself as if I wasn't having treatment there. It was more like I worked there, and psychologically I was happier. Even though the injection still made me uncomfortable, at least I made it go by very, very quickly.

As I said, this period was very, very difficult. During this one year, I relied on the support of my family and friends, usually through mail and telephone calls. Many caring messages from all over the place came to support me. Finally I thought that I had won the battle against cancer.

In 1999, I finished my work in Taipei and returned to California. After surgery, my major task was to do follow-up checkups. At first I had a follow-up exam every three months. Later it was every six months, and then once a year. My last exam was in April this year. All the results turned out fine. As of July of this year, it has already been six years since the surgery.

Valuable Lessons to Share

My experience might be helpful to other cancer patients. After I returned and settled down in the United States, I thought if I could share my experience with the current patients, it might bring them some encouragement. Currently I am volunteering for the American Cancer Society's Northern California Chapter. The work includes escorting patients to doctors' offices and to their treatment appointments, interpreting for them, etc. Also we do promotions for cancer prevention, and I am the speaker on the topic of colon cancer. When they think about that this person who comes to pick them up and speaks about colon cancer, that she herself is a cancer survivor, and she is doing very well and doing all of these things--I think this will make them feel that if they persist in doing their treatment, they will also regain their health.

Now I always hope to do my best to help the people who need some help. I would like to share my thoughts with everyone. Based on my story, I would like to tell you the following points: first, trust the feelings about your own body. If you feel there is something uncomfortable in your body, go see a doctor. If you aren't sure about the doctor's diagnosis, or you feel that what he says is unreasonable and you are unsatisfied, I hope that you will insist on pursuing the truth.

After surgery, I am grateful that the doctor saved my life. If he hadn't done the surgery, I would be dead by now. And he said,"Not at all. It was you who saved yourself. Without your persistence, we could not have done it." When my doctors in Taiwan and California all said that I was fine, I should have been happy. Nobody wants to get sick, but I felt it was impossible that I was all right. My body told me something was wrong. And on August 1, 1996 if I had returned to Taipei, I would not be here today to share my story with you.

Secondly, I want to tell you about the psychological characteristics of cancer patients. Up until now there hasn't been any type of drug that guarantees a cure. Recently I escorted a cancer patient who had a recurrence; she was a patient of breast cancer. At the time she was having chemotherapy treatment. She asked the doctor, "How can you tell if my treatment will be effective this time, and it won't happen again?" The doctor said regretfully, "I can't give you any promises. Right now I can only offer you what I consider the best treatment." I could see the disappointment on that patient's face. On the way home I said to her, "I know you are disappointed that the doctor can't give you any promises, but as of yet he really doesn't have a drug that can guarantee that you absolutely will not have a problem again, or a recurrence. However, I think we shouldn't worry about the unknown. He said he is offering you the best possible treatment. We should accept it and have regular checkups. If there is any reappearance of cancer cells, then go for early treatment. You need to have faith while fighting cancer. You have always said that I am very lucky to have recovered well."

Actually my doctor warned me that if your cancer cells spread, it would be a big problem. But I do not let this thing bother me. I don't consider myself a patient anymore. At this stage, I am a healthy person. But I can't forget that I was a cancer patient, so I must have regular checkups to maintain my body's health.

Third, there should be a mutual, trusting relationship between a patient and her doctor. If you are able to choose your own doctor, I think you have to trust him or her that he or she is a good a doctor with integrity. When the patient and the doctor have good communication, we have more confidence and better results in treatment.

Lastly, I just talked about [the importance] of continuing follow-up exams to prevent the recurrence of cancer cells. Try to be as early as it can be. If there is any sign of recurrence, you will detect it earlier. Recently I made a friend who had cancer, and her cancer had recurred. I asked her, "When did you find out about the recurrence? Meanwhile, have you had checkups regularly?" She said that after she had her surgery and finishing the first round of treatment, she did not go back for follow-up exams, so she didn't know when the cancer had appeared again. Because of that, we could have missed the opportunity to treat her in time.

So I urge everyone not to forget to do follow-up exams. At the same time--I think we must face the illness when it arrives--but we shouldn't worry all the time and say that I am having a recurrence. It will bring us lots of stress. But I hope that we can live each day as happily as possible. Even if we get sick, we can still overcome the disease and become the winner.

This is my story. If it can bring you a little encouragement, then I think today has been a wonderful day. Thank you.

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