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First created on February 17, 1999/Updated on Feburary 15, 2002 by Jiang Nan
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A Web page created in memory of my wife, Luo Huiling
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Luo Huiling 罗惠玲 1964-1999 罗惠玲生于64年11月10日，先后就读于南京外国语学校和 南京师范大学，87年结婚，90年生女儿贝贝，92年来美，98年3月诊断得癌症，99年2月16日在宾州去世。 Luo Huiling was born on November 10, 1964 in Nanjing, China. She went to Nanjing Foreign Languages School (Nanjing Waiyu Xuexiao) from 1974 to 1982. She received her B.A. in Russian Language and Literature from the Foreign Languages Department, Nanjing Normal University in 1986. She worked for the provincial governement of Jiangsu from 1986-1992, and came to join me in the United States in December 1992. She was diagnosed with cervical cancer Stage IIb in March 1998 and died in State College, PA at 10:20 p.m. on February 16, 1999 at the age of 34. |
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Dao Wang Qi: A Chinese essay I wrote and published in Huaxiwenzhai two weeks after her death (in JPEG image format; No Chinese program necessary to read, but may take a few minutes to load)
Last Months: outline of events since her diagnosis to the last day
Messages: messages I sent to our friends in her final days
Photos: some of Luo Huiling's pictures
From diagnosis to the last day
Luo Huiling was first diagnosed with cervical cancer Stage IIb at University of Arizona Medical Center in late March, 1998. Accroding to the doctor and the information I got from the hospital, the cure rate is 75%. She received an exploratory surgery on 3/24/98, which was followed by six weeks of radiation. She received the maximum dosage allowed. Her tumor shrank from 9 cm to 2 cm by the end of the sixth week. A surgery was scheduled to remove the uteras on 6/1, but the doctor changed the plan, partly because we told the UMC business office that we were not able to bring $10,000 to the hospital on the day of the surgery. We asked the doctor if the surgery would make a difference, or not having a surgery would make a difference. He said no. After being told that we were moving to Pennsylvania, he also told us it should be all right to continue treatment in August in PA and she needed a break after the radiation treatment anyway. He also said the effect of the rediation treatment should last for another couple of months.
So We left Tucson in June with little worry about her condition. The following sketches what happened in the next a few months:
6/20 She went to a medical center in Oklahoma City for a checkup and was told the tumor was less than 2 cm.
8/4 She came to Pennsylvania.
8/18 Our daughter's birthday. We went to the Hershey Medical Center. We were told the tumor had grown to the bowel, bladder and vegina. The doctors decided to perform a major surgery to remove everything in the pelvis. The cure rate after surgery is 50%, we were told.
8/31 A day after my birthday. During the surgery, the doctors found the tumor had already spreat to the side of the abdoma and the surgery was abandomed. The only option now was chemotherapy. The cure rate is 1ess than 10%.
9/28 First chemotherapy.
10/20 Second themotherapy.
11/11 A day after her birthday. She was admitted to the Hershey Medical Center for high fever a few days earlier. A CT scan was given to evaluate the effect of chemotherapy on 11/10. The results came out today. They showed that the tumor has grown much bigger and there were tumors in her chest area too. The tumor blocked the passage from the kidney to the bladder, causing the difficulty in urination she complained about. The doctor told us they had to stop chemotherapy and she had less than six month to live. She wanted to go home immediately. She was discharged at 9:00 p.m. and we got home around 11:00 p.m.
From 9/10 to 11/10, I had to take her to the local emergency room six times for bleeding, infection and high fever. She had to be transfered to Hershey in an ambulance four times. She had the constant difficulty in bowel movement and urination.
11/24 At the request of her doctor, a nurse from Centre Hospice came. She explained what the program does, i.e. to help terminally ill patients to die at home without pain. She signed for the program.
11/27 Her pain got out of control tonight. For the very time, she realized that she didn't have many days to live. She told me that she probably could not live for a week.
11/28 Gu Shan and Ma Shu came to visit her from Delaware.
11/30 Cai Shujing and friends, came to visit her from New York. Gu Shan cooked some crabs and sent it here via Fedaral Express from Delaware. On the same night, she was sent to the local ER for difficulty in breathing.
Mid-December to Mid-January These were the best several weeks she had since she started chemo. The pain was well under control. She was able to eat regular food, go shopping with me occationally and watch TV and read newspapers.
1/21 I drove her to ER for blood in the urine and constipation. Stayed for a week.
1/26 Once she got home, I notice she had short and shallow breathing.
2/5 I was in Alabama for a job interview. She was taken to ER for breathing difficulty. I cancelled part of the interview and came back on 2/6.
2/9 Two tubes were inserted into her kidneys to drain the urine.
2/16 Died at 10:20 p.m. in Centre Community Hospital, State College, PA, with her husband at her side.
Hi friends,
The results of Luo Huiling's CT scan came out last night. They showed the tumor
has grown to the right kidney and to the chest. This means chemotherapy doesn't
work for her (she had two shots). There is very little more the doctor can do
now. They decided to stop any treatment. The doctor told us she has less than
six months.
Please don't call us for the next a few days so that she doesn't have to explain
her condition to people again and again. But do send her a get-well card when
you get time in the next a few weeks. Tell her not to give up. Our address is
2078 Mary Ellen Lane, State College, PA 16803. Send me email messages if you
want to know more about her condition.
I will do some research about the medical centers in this country that are successful
in treating cervical cancer and will contact the insurance company for transferring
her there for treatment, if I find one.
She is very calm. Right now she is watching "The Price is Right",
one of her favourite TV programs. If her condition permits, we will go and visit
New York, D.C., go back to Tucson for a week and take a cruiss trip.
The doctor promised they will not let her suffer.
Best Regards,
Jiang Nan
We went to D.C. on Saturday morning. visited downtown and had dinner in chinatown.
she threw up in the restaurant and scared a customer away. stayed in a hotel
six miles from downtown D.C. for the night. visited the capital hill and white
house on Sunday Morning, ordered the lunch from the same restaurant, took it
back to the hotel at around 2:00 pm. planned to go back to the downtown area
in early evening, but she had a fever, a scary 102.6F. took two tylenons, turned
on the air conditioning and bought bottled water and ice. the temperature went
down to normal at 7:30, went to downtown for 30 minutes. she said she probably
can't visit any other places (referring to New York, Tucson...) because of the
fever. She can easily get very scared when she has a fever. At one point, we
were considering driving to Hershey Medical Center which is 2 hours away.
she was quite energetic on Monday morning, went down to have
her breakfast by herself, we left D.C. at 9:45 and got home at 1:40 p.m. nice
chat in the evening, she went to bed at 11:00. she sometimes has to take extra
pain pills to control her pain.
Best Regards,
Jiang Nan
11/26
A nurse from Centre Hospice came yesterday at the request
of Luo Huiling's doctor and social worker. Hospice provides home care service
for terminally ill patients who have no more than six months to live. What they
do is to help the patient's family take care of the patient and to keep the
patient comfortable at home until she or he dies at home. Nurses will come to
visit and help on a daily basis and they provide pain medicine and other needed
items such as wheelchair. However, to get the service, the patient has to agree
not to seek to extend his/her life when the time comes for her/him to leave.
They call it to die naturally at home. We are not supposed to call ambulance
or request the use of any life supporting devices when she is dying. This is
very similar to what the Chinese term "ling zhong guan huai" means.
I explained it to her and asked her to think about it before she signs the form,
but she signed it without any hesitation. The service started yesterday. She
started to use a different set of pain medicine and we also requested a wheel
chair for our visit to Philadelphia.
I went to Hershey to pick up her medical record at
2:00 and got home at 7:00. We need to bring the record to Philadephia. I will
call the doctor tomorrow to ask if it is ok for me to bring only the record
there if she is too weak to go.
What worries us now is her high blood pressure 145/100
and fast heart rate (110 to 130/minute). It suggests her heart has to work extra
hard, according to the nurse. Our roommate, who graduated from a college of
Chinese medicine, told us she is not doing good. His father and father-in-law
both died of cancer. At one point, he indicated that she has only a few days
to live. She has some discomfort breathing, but that may be the side effect
of the new pain patch and may go away tomorrow.
The new pain patch is very effective. She has less
discomfort than before. She even felt hungry this afternoon, the first time
in a long period of time. She spent most of her time in bed, but she tries not
to miss The Price is right at 11:00 a.m. and Wheel of fortune at 7:30 p.m.,
her favorite TV programs. She is also making a great effort to eat.
Joy, our daughter, doesn't seem to understand that
much about what is going on in the family. Or she understands it, but
can't seem to behave the way we hoped. Sometimes, it is quite obvious that she
wants to be nice to her mom, but at other times, she continues to be bad-tempered
and gets mad for whatever reason. I took her to downtown to see lights and on
our way back rented a kids video for her. That is as much as I can do for her
for this thanksgiving. We also colored a picture together today.
There is no way we can cure her, but I can make every
one of her remaining days a happy one. I wnat to assure you that I am taking
a good care of Luo Huiling. I spend most of my time with her, day and night
(I carry my laptop computer to wherever she lies) and don't leave home unless
absolutely necessary. I am doing whatever necessary to keep her comfortable
and happy. She is a very couragous woman. She never went panic. She has two
biggest wishes, to get her younger sister here and me finding a job. We are
working on both. I will send you a message once or twice every week to keep
you informed of her condition. We received many get-well cards since I sent
you the message three weeks ago. Dinner time is a good time if you want to call
here. Otherwise, she may be waken up from her sleep.
I don't have the email address for all that I
want to send this and other messages to. Please share this information with
other friends of ours.
You all take care and have a great thanksgiving holiday.
11/28, Saturday, Midnight
Although I slept for less than a hour last night, I still
don't feel sleepy at all tonight. Last night was a horrible and scary one. She
had some red been soup for lunch yesterday and an orange for dinner. At around
9:30 p.m., she started to vomit. She threw up everything she ate that day. Then
she started to have that pain. For the first time since she was sick, she told
me that she probably could not hold on for more than a week. She told me she
never had the pain like that before. It was all over her. She took one ml of
morphine at 10:00. It didn't work. I called the nurse, and then gave her another
ml at 11:00. It didn't work for her at all. I called the nurse again, tried
2 ml at 12:00, changed her pain patch and gave her another pain medicine called
Dilaudid. I tried everything I could think of, but none worked for her. The
nurse didn't know what to do either. She repeatedly told me that the morphine
should work for her. I was very angry. I told her it didn't. I had to press
her tumor part to make her feel better. I called both families in China shortly
after midnight, as we told them we would. She was still in pain and could not
talk. At around 1:00 a.m., she became calm a little bit. We started to
talk, in whisper. We talked about many things. She said she really wanted her
younger sister to come. I told her to hold on for two weeks so that she can
see her younger sister. At around 2:20 a.m., we decided to stop talking and
try to go to sleep.
She went to the bathroom at around 4:10. When she came back,
I saw the clock showing 4:44. (the number 4 has the same pronunciation as the
word death in Chinese) I decided I didn't want to go to sleep. She requested
another ml of morphine. I looked at her. Sometimes I scratched back or pressed
the tumor part to make her feel comfortable. She was like half asleep, with
her eyes closed and mouth open. She had difficulty breathing. Parts of her body
such as hands and arms, feet and legs, shoulders, produced involuntary and quick
movement like shaking. This went on for the rest of the night till her sister
came at around 8:00 a.m. I went down to the sitting room to sleep on the couch.
I can't remember if I fell asleep, but I got up at around 9:00 and went upstairs
to her room.
Gu Shan called in the morning to ask if we were still going
to Philadelphia. I told her Luo Huiling is too week to go. She said they could
come over on Sunday. I told her Luo Huiling could leave in any moment and if
they could, they might come today. That was around 9:30. Made several calls
to the nurse and the funeral service. A Ling called from Tucson. I told her
about Luo Huiling's condition. I couldn't finish the talk. A few minutes later,
Hanjing called. I was sitting by her side for the rest of the morning.
She got some stall out at around 11:00 and felt much better.
By the time the nurse came at around noon, she felt much better. The pain was
almost gone. Her breathe was normal. When she was listening and talking
to the nurse, she could smile. "You are very alert. That's very good."
the nurse said repeatedly. She had an orange for breakfast. another later, she
drank some tea, but it made her threw up everything in her stomach.
Gu Shan and Ma Shu got here at around 2:30 from Delaware.
For the rest of the day, she was just another person. She talked, she asked,
and she smiled. She even got up and went to the other room to tell her sister
how to prepare the bed for the visitors. I made a call to Huang Caiya, her classmate
at Nanshida. I could not talk that much. She took an orange, but vomitted later.
Xiao Wei came in the evening. I fed her a bowl of red been soup later in the
evening. It stayed in.
As I coughed a little bit, I asked her sister to keep
her company tonight and I will sleep on the couch in the sittingroom. But I
just could not go to sleep. I went upstairs to stay with her. She was half asleep,
with her eyes closed and mouth open. She was sweating, as she did for the most
of the day. I remembered how my grandmother looked when her body lied in the
sittingroom shortly after her death, eyes cloased and mouth open, yellowish
skin and very skinny. Luo Huiling looks just like that when she lies in her
bed.
I went down stairs as she and her sister suggested.
But I don't feel sleepy at all. I decided to write this message. Then I will
go upstairs to sit by her side. I want to look at her and hold her warm hand
when she is still alive, when she could still talk to me, when she could still
show me her affection for me and when I can still hold her warm hands. Maybe,
we can talk a little bit, if she doesn't feel like going to sleep. We have been
talking in whisper for hours at night. We talked about many of our first times.
I know I will miss her smile and her deep love for me for the rest of my life.
11/30
I am sorry if my last message scared you. Also, if you feel distracted reading
messages about Luo Huiling's condition, you don't have to open the messages
with "Luo Huiling" in the subject line. If something extraordinary
happens, I will indicate it in the subject line.
She is stable right now. The pain is under control. Her four major problems
remain.
1. Illusion--she is bothered by constant illusion. Once she closes her eyes,
she is in a dreaming state. Sometimes even when she is talking with me or listening
to me with the eyes open, she told me hearing another person calling her name
at the same time. Once, a few seconds after she closed her eyes, she smiled.
I asked her why she smiled. She told me she was going to my lab and passing
Judy's office and was saying hello to her. Another time, she said get the line
straight. She told me she dreamed my making a phone call with the phone line
twisted and tangled.
2. Involuntary movement--It caught my attention about 4 or 5 days ago, but it
must have started much earlier. Part of her body moved suddenly and involuntarily.
It used to be a hand, or a foot, then a leg. Three days ago, more than one part
may do it simultanously, e.g., both legs, or left leg and left arms. It also
extended to her face and head. Starting from tomorrow, she does that even when
she is awake with eyes open. Her entire body may spring from the bed. It is
sometimes very scary to me. Such movements occur in every minute now when her
eyes are close. It happens quite often when her eyes are open. Her eye balls
seem to have that kind of movement when they are open.
Both of these seem to indicate that her brain has been affected.
3. Vomitting--she vomits 2 out of 3 times after she eats or drinks something.
It looks that the tumor has blocked the pathway in the abdoma and the stomach
doesn't want to take in anything. The same reason explains her difficulty in
bowel movement and urination.
4. fast heart rate and high blood pressure (170/118).
I called the hospice nurse today to request to give her some fluid through iv. She tried to explain that while the body is shutting down, it is natural that she does't take in anything. She seems to suggest that she is not going to do anything and let her go like that. I got angry and told her if this is what this hospice program is about, I have to cancel it. Then she backed up and said she would contact the doctor in Hershey to ask what she would have and contact the company to set up the machine. She said it can be done today, but then called back to say tomorrow.
I learned from the nurse the other day that her lungs are affected too. She said the doctor in Hershey told her that. But the doctor has never told us anything like that. She sometimes has difficulty in breathing, but she is mostly fine with breathing. I have to hide this from her.
I didn't dare to suggest to her that the involuntary movement and illusion may be caused by an affected brain. She herself came up with the explanation that they may have to do with her being dehydrated. I am very happy to accept that explanation.
She is very weak. I have to feed her. She needs help to sit up. She is making a tremendous effort to eat. No matter how many times she vomits in a day, she will ask to eat something as soon as she feels all right. Often times, she could not throw up anything at all. She took five baby carrot at four, but vomitted at five. But no carrot. I told her her stomach seems to be functioning and digesting very well (partly because it is empty). She agreed. I often told her something positive even when I myself is very skeptical about it.
She is lying on the bed right now,with her eyes closed and her mouth open. Parts of her body move involuntarily every minute. I have to put the rail up in fear that she may spring herself off the bed. Otherwise she is doing fine. She looks calm. She spent most of her day and night like this. There is no difference between day and night to her. She can't fall asleep well at night because she has to go the bathroom every hour. She knows it is the tumor that causes the pressure and makes her feel like to go and she will most likely get nothing out, but she still goes.
While videotaping her, she said hello to you all and she said she is very grateful
that so many people are thinking of her. She just had a big one and I had to
stop in the middle of the last sentence. She herself also woke up from the movement.
11/30
Another scary night. Three friends came to see her from New York and got here
around midnight. About 20 minutes later, she felt short of breath and pain in
her chest. She said she had to go to the emergency room (ER). I immediately
call the Hospice and then called 911 for an ambulance. Six minutes later, the
ambulance arrived and we went to the local ER. She vomitted. It is very hard
to imagine that was still so much stuff in her stomach. When she vomitted during
the day, very little came out. I guess she just didn't have the strength to
get it out. Now she could because she received fluit from IV and was less dehydrated.
Another ten minutes later, her shaking started to increase,
eventually developed into a horrible seisure. Her face was completed distorted
and bubbles came out from her mouth.
The seisure lasted about a minute or two. I yelled for help. Some medicine was
injected and she calmed down and went into deep sleep.
I was coughing all the time while in the ER. Whenever
I took in air, I would cough. So I took myself to the registration desk and
became an ER patient myself too. I was examined and given an antibiotic pill
and a prescrition.
I slept on a couch for a while but was sitting by her bed
for most of the night. I was thinking if we had not called the ambulance, she
might have passed away. She threw up everything she ate for the past 4-5 days.
She was extremely dehydrated (tuoshui). If that is what this hospice program
is about, I think I made a smart decision to cancel it.
12/1
She woke up at 7:00 a.m. from her long deep sleep.
As soon as she talked, I noticed she had become a different person. Her sentences
were fine, but they were not related to each other and to what I was saying
to her. She didn't remember anything happened last night. Her tone and facial
expression were like those of a three-year-old kid. The first thought coming
to my mind was that the seisure had damaged her brain. She seemed to live in
a fantacy world. She had constant fantacy for quite a few days, but before the
seisure, she would told us she dreamed of something or she seemed to be able
to see somebody in the room or hear someone call her name. She was mostly living
in the real world, though constantly bothered by her fantacy. But now, she was
living in her fantacy world. She could still wake up from her fantacy world
accosionally and responded to what I said, but most of the time she could not.
The ambulance came and we left for Hershey at 8:30
a.m. I didn't have foot since I had my lunch yesterday. So I drank a can of
Ensure before I left in the ambulance. That proved to be a disaster. I threw
up every fifteen to twenty minutes for the next two hours to Hershey.
We got to Hershey Medical Center at 10:30 and she was
directly brought to her room on the 3rd floor. From then to midnight, she could
not go to sleep, sometimes quite talkative, but continued to talk from her fantacy
world more often than the reality.
I learned this is called helucinating (sp?). One helucinates
when one cannot distinguish between what is in the reality and what is in her
dream. In retrospect, I guess this has to do with the factor that she did not
have good sleeps for the past a few weeks. She always felt like to go to the
bathroom so she got up every hour to go even though she could not get anything
out and even though the doctor told her the feeling of wanting to go was caused
by the pressure from the tumor. Because she didn't sleep well during the night
and because she did not eat much, she spent most of her day time on bed. So
she lived in a half-awake-andhalf-asleep way for the day and night in the past
weeks.
Her speech problems continued. One, she intended to
say one thing, but ended up saying another thing. Two, she spoke from her dreams,
rather than responding to others. Xiao Huo, Zhou Ming from Indiana came to her
room in the afternoon, bringing her sister. It took her a while to recognize
who they were. Her first recognition was always wrong. She took her sister as
her younger sister, Xiao Huo as Xiao Fan and Zhou Ming as our daughter.
I felt very sad to see her like that.
We five had some nice chat. She was able to bring herself
to reality for most of the time. She asked me to give her math problems to do
in order to show that her mind is clear and alert. She was able to do simple
ones all right. She sometimes realized that she was talking to us from her dreams.
In such occations, she would have the facial expression and gesture as if to
say, I hate that, I am sorry, or not again. Before they left, she asked Xiao
Huo to take care of his health. Don't be like her.
The doctor and the residents came in the evening. We
were told that she doesn't have serious problem with her brain, lungs, heart
and kidneys. The problem now is the tumor blocked the pathway for urination.
As a result, the level of waste in her blood is very high, as if the kidneys
are not functioning. If she has a pipe installed to help her drain the urine,
she may be able to live for another one or two months until her kidneys do lose
the function and she will gradually lose her consciousness as a result of the
high level of waste in her blood, among other things. If she didnot do that,
once the cathetor is taken out, she will only live for a day or two. We
of course asked to install the pipe.
She was in good spirit, and talkative for most of the
day, particularly after she learned she still have a couple of months. She talked
about going back to China. She felt sorry for her parents. She said she would
go to Atlantic City to gamble. She said with a guilty smile that she loves gambling.
At one point, she said she felt all right now. She did not have any discormfort.
When we talked about the doctor in Bufflo, NY, she said maybe, he can operate
on her and she can live even longer. She hold my hand with both her hands and
looked very happy and satisfied when we talked. When I think that she could
have passed away yesterday, and when I looked at her happy and satisfied face
and smile, I felt all the effort and time I spent since March is worthwhile.
But she could not go to sleep without dreaming and
talking from her dreams. I made a great effort to help her sleep, but not very
successful. I left her at about 12:30 after midnight after she promised that
she would sleep well. She told not to worry. I went down to the lobby area and
slept on a couch.
12/2
I went up to her room at 5:50 a.m. She was fast asleep.
Not like yesterday, she was really asleep now. I stayed for a hour, went down
to have breakfast and then to a waiting room on the third floor for another
sleep. When I came back at 9:00,she was still asleep. I had terrible headache
since last night. My coughing came back. I thoght it might be a good idea to
go back for a good sleep and come back tomorrow. I cleaned her body with a warm
wet towel. I was intentionally trying to talk to her, but she didn't talk. The
only response was to raise the other arm when I said, now the other arm.
She was finally awake a little bit at 3:00. I told
her I need to go back to have a good sleep and get my medicine. She said ok.
Before I left, I told the nurse Debby to try to feed her something for dinner
and asked her phone number.
Got home at 7:10, had some noodle, made a few phone
calls, then went to sleep at around 8:15. Woke up by a call at 10:50. She was
completely awake now. Her speech was normal too. She has changed back to herself
after that long long sleep. I asked her if she wanted to eat anything. She said
yes. Her sister is preparing some noodle now. I take my time to finish this
message. It is 11:25 p.m. now. Then we will drive over to Hershey, drop her
sister there and I came back to continue my sleep. I hope two hours and half
of qauality sleep may keep me concentrated for four hours of driving.
When I heard her talk over the phone like she used to be, I can't help thinking I did a great thing.
12/6
After staying in the Hershey Medical Center for six days,
Luo Huiling is back home. A friend from the local Chinese church is very kind
to go and pick her and her sister up from Hershey. While she was in Hershey,
three friends came to visit her from D.C. and New Jersey.
She is weak and doesn't have much apitite. She doesn't feel like
to sit up, take a walk, or even talk. She just wants to lie down and sleep.
But she can't fall asleep. She eats very little, just half a bowl of sour and
spicy soup brought here by the couple from the Chinese church. She vomitted
twice in the evening, but she doesn't seem to have the strength to throw up
everything in her stumach.
Our plan is to call the doctor in Buffalo on Monday and arrange
a time for a visit and possibly a surgery.
Jiang Nan
12/12
It has been a week since she came home from the hospital. She remains weak for
most of the time. Wednesday was exception. Today she looks ok too. She is reading
the material Wu Jian sent over. She decided to try Falungong. I don't feel she
really believes it, but without no other way out, she finally decided to try
it, whenever she has the strength to do so.
We are still waiting to hear from the doctor in Buffalo. He asked Luo Huiling
to have another CT and we did it on Thursday and it was sent to the doctor from
the local hospital directly.
The health insurance company has denied our request to visit the doctor in Buffalo.
But if that doctor decides to accept her, we will go in spite of that.
Jiang Nan
Jiang Nan
12/21
This is the eighth day she is on I.V. fluid (gua putaotang shui). She is doing
fine.
She started I.V fluid because she was vomitting and could not keep anything
in. Two days after she started I.V., she took some medicine called "magic
bullet". It stopped her vomitting. Then, her stomach area was like a full
flown balloon and for two days, she was tortured by the feeling of fullness.
She had to take morphine for it. Her sister and I took turn to rub her stomach
area to help her feel better. She had a combination of three different medicines
for constipation (bianmi) two days ago. She was able to have bowel movement
(dabian) now. Vaginal bleeding returned yesterday, and this has become a new
worry. Since September, she has gone through all sorts of complications and
discomfort. It will probably remain like this for the rest of her time.
Now she feels all right. She was able to do some reading in bed yesterday. She has finished reading Zhuanfalun, and is reading it for a second time. She is really into it. She wanted to call Wu Jian's home to ask her husband about it last night. She doesn't feel she only has a few weeks. I encourage her to have positve thinking about her conditioni in various ways and whenever I have a chance. She has not felt any pain related to the tumor for more than a week now. It may be because she changed the dosage of the pain patch from 75 ml to 100ml ($15/patch) a few days ago. Or it may be a good sign.
She said she could get up today if not for the bleeding. She started to eat
three days ago after four or five days without much food. First vegetable soup.
She loves my vegetable soup. At one mightnight (the first night she started
to eat), she wanted to eat blackpepper shrimps (jiaoyanxia). So I went to the
nearby grocery store and bought some black pepper (going to a store after midnight
is a normal part of my life now. It can be for anything, a medicine, a particular
kind of drink. You are happy to go anywhere at any time to buy anything when
a patient finally tells you she wants to eat this or that). I prepared a very
delicious dish of blackpepper shrimps and she ate nine of them and kept saying
delicious. I guess the strong taste of the dish really met her need for salt.
Of course, it also says something about my cooking.
Zhou Ming and Xiao Huo are coming from Indiana, PA to see her on 12/24. She
won't have any problem recognizing them this time. She first could not recognize
them when they went to Hershey Medical Center after her seizure. I hope she
can hold on like this to enjoy their visit.
She is asleep right now. She and I didn't have much sleep last night. She had
to get up every hour or so.
Her sister's application for a visa was denied for a second time. We have told
her about it.
We are not going to send out any card this year. But I do want you to know that
Luo Huiling and I deeply appreciate the help and support you provided us at
this time of crisis. They mean a lot to us. We wish you a very happy New Year.
Jiang Nan
12/25/98
Hello, everybody! This is Luo Huiling. I am up and walking again. For the past
a few days, I feel quite energetic. I have a good appitide and eat regular food,
three meals a day. I even went to Jiang Nan's supervisor's home last night.
I read Zhuan Falun every day. I feel it is very helpful. I haven't felt any
pain for almost two weeks now. I want to thank you for keeping me in your thoughts.
I wish you a merry Christmas and a very happy New Year. (I asked Jiang Nan to
type this for me.)
Luo Huiling (signature)
1/15
Thanks to those who inquired about Luo Huiling's condition recently. Luo Huiling
is doing fine. She is just like a typical patient, but not worse than that.
She has a decent appitite, has pain only occationally, and is up and around
all the time, spending most of her day time watching TY, reading newspaper and
talking and sleeping. She sometimes goes to shopping with me. She also likes
to watch Joy's playing with snow outside. However, she complaint twice about
difficulty in breathing in the past week, ( a few hours each time). She sometimes
has pain in her chest area and stomach. She also feels two small tumors in her
tummy area, though she feels no pain. I can also feel something but not sure
that is a tumor. These are very disturbing signs to me. A friend of us brought
a whole bag of Lizhi from China for her but it is very bitter to drink. It sometimes
makes her vomit. She doesn't like it at all and agrees to drink it only once
a day. She is optimistic and positive about her condition and sometimes even
jokes about her illness. The pain (caused by the tumor) she used to have is
gone for more than three weeks now. But she sometimes can have severe pain in
her stomach and where the catheter is (she is still catheterised). On the whole
she is doing great. It is better than expected.
Best,
--Jiang Nan
2/7, 1:00 a.m.
I took her to the local emergency room (ER) on the night
of 1/21 for blood in her urine. She also had problems with bowel movement which
caused a great deal of pain. She stayed in the hospital for a week. As she was
stable and there was nothing the doctor could do about either bleeding and bowel
movement, and as she was tired of staying in the hospital, she was discharged
on 1/26.
Once she got home, I noticed that she had short and shallow
breathing. She occationally coughed as well. These are the signs we were told
to watch for because they mean her lungs start to show the effect caused by
the tumor. As she was not able to eat much, she was very week and remained in
bed. She was able to do some reading.
I left for Alabama for a job interview on 2/4. 2/5
night, after a long day meeting thousands of people and a long, long dinner
with some faculty members, I got back to my hotel room at 10:00 p.m. I called
home. No one answered the phone. I knew there was something wrong. Not long
after, the Chinese church minister called me and told me that she was taken
to the local ER around 7:00 that evening for difficulty in breathing. I called
the hospital and was able to talk with her sister and herself for a while. She
seemed stable, but I knew it could happen at any time.
Next morning, I told one of the faculty members about
her condition and my hesitation as to whether to go home or stay for the rest
of the arranged activities on 2/6, Saturday. He strongly suggested I should
go home. We made several phones and one search committee member drove me to
the Atlanta airport. I got back to state college at 11:00 p.m. I am now with
her in her room. Both the nurse and she told me that the X-ray results show
her kidneys were blocked. The problem with the lungs is obvious. She has to
rely on oxygen. She did manage to talk with me for about 30 minutes. She wants
me to send this message to you so that you know her condition. She is calm.
Jiang Nan
2/9
Now I have more information about what happened in
the past a few days. On the day I left for Alabama, she started to receive I.V.
fluid. However, the passway from the kidneys to the bladder have been blocked
by the tumor. As a result, some of the fluid ended up in her lungs, causing
difficulty in breathing. Yesterday, she had two tubes inserted into her kidneys.
They came out from her back with two bags attached. They help drain the urine
directly from the kidneys. One of tubes seems to work quite well. The other
got a lot of blood in it. A second procedure will be done after the blood in
the other tube is clear. Two tubes will be inserted from the kidneys to the
bladder so that she doesn't have carry those two bags on her back.
The old problem is still there, constipation (bianmi)
caused by obstruction from the tumor. Her stomach is again full of gas and becomes
very firm. She has not eaten much for the past three weeks. She is very weak.
On the night I got back, we were able to talk for a while, but she spent most
of her day sleeping today. She does not seem to have immediate danger. She is
extremely thin.
She had always been optimistic about her condition,
even under the worst circumstance. She believed that a miracle might indeed
happen. but she said today that she regrets about having the surgery she had
yesterday. She said she'd rather let herself go. At her request, she was baptized
yesterday. She talked about what she should ware on that day. She is preparing
herself.
Jiang Nan
2/14
I went to the hospital at 1:30. She was not doing very well. She was able to
drink some water and soda. Later in the afternoon, I suggested she should drink
some Ensure. She agreed. Later in the evening, she said she could eat some noodle
then. I prepared the noodle in the morning but she did not feel like eating
anything at that time. I was able to feed her five to six small spoonfuls of
noodle, often with a break between them. She then asked me, I have eaten quite
some, haven't I? I didn't have the heart to tell her it was just five or six
spoonfuls. She wanted herself to eat more to gain strength. Knowing that she
had eaten quite some made her feel comfortable. This reminded me of when she
ate a lot in December and January. She was making a tremendous effect to eat
more so to gain weight.
I stayed till 11:30 p.m. Then I went home and drove her sister to the hospital.
2/15
Shortly after 7:00, I talked with the doctor over the phone about moving her
to the hospice patient room. I made the suggestion last night and Luo Huiling
agreed. Then, I thought the hospice room is where people die and if Luo Huiling
knows it, it may make her feel very uncomfortable. I called her sister and asked
her to tell Luo Huiling not to move to the hospice room. At around 9:00, I got
a call from her sister, telling me Luo Huiling wanted me to go to her room and
she wanted to talk to me. Then Luo Huiling got the phone and reminded me to
send her sister's application of extension before I left.
I went to the travel agency and got the refund for the ticket on my way to
the hospital. She told me two days earlier not to go to Boston for another job
interview. She said Auburn is fine and she didn't want me to leave at this time.
We had a very calm and pleasant conversation. She told what I need to do after
her death. Her breath was difficult. She had to pause between words. She told
me she was ready to go. I stayed alone with her for most of the day. We could
not talk that much. Her sister and Joy came in afternoon (Judy and David gave
them the ride) and went back at dinner time.
Later in the evening (8:00 ?), she woke up a little bit and said she wanted
to see Joy and her sister. When Judy and David sent her sister and Joy to the
room, she asked Judy to move to her right side (she mostly faces the right side
when lying on bed). She apologized for not being able to invite Judy and David
home for a dinner. She told her that we had always wanted to do that and now
it was impossible. She also said to Judy apologetically that I could not do
much research while in here. She also said she wanted to go to Auburn with me,
but now she could not. She said she was so grateful to Judy for taking care
of Joy and many other things. I just did not have the heart to listen. When
she saw David, she said, sorry I did not say hi when you came earlier today.
When Judy and David came in the afternoon, she was able to force a smile to
Judy, but was not able to do anything when David came in. However, while David
was sitting here, she did ask me to ask David what he wanted for drink. But
she could not remember it.
Joy and her aunt left for home shortly. I stayed on with Luo Huiling. This is a night I will never forget in my life. Her condition was obviously deteriorating. She mostly kept her eyes open throughout the night. I asked her to close her eyes and sleep for while numerously times, but she could not do that. Every breath was a struggle. At one point, I asked her to call my name. I said, if you have some strength, can you call Jiang Nan? I told her I wanted so much to hear her call my name. Upon hearing that, she called Jiang Nan for a dozen of times. I did not realize till then that it is such a great pleasure to hear her call my name.
I felt truly happy to hear her call my name. However, such happiness is leaving
me once for ever.
At around 1:00, I tried to wet her month. She said it is not important any
more. I told her that every minute of her life is important to me. She answered,
I know. But she still refused to let me wet her mouth.
She spent most of the night with her eyes open, but she would not respond to
my talk that often, particularly after mid-night. At one point, I wrote "I
am saying with my action that I love you deeply" on a piece of paper and
showed it to her. She read it and said thank you. Sometimes, I asked her to
look at me. She would do so, but sometimes, with a kind of smile I don't understand.
At around 4:00 a.m., she told me to hold her hand and not to release. She said
she did not want to go. She said, don't let me die, hold my hand, wait. I was
holding her hand for about 40 minutes. I guess deeply in her mind, she did not
want to die, though she said she wanted to go. There were two occasions throughout
the night that she'd rather go. When I saw her uncomfortable facial expression,
I asked her if she had any pain or difficulty in breathing. I suggested that
I could call the nurse to increase the flow of oxygen and/or morphine (she was
taking 14 ml morphine a hour). She said no. She said she wanted to go. Later
that night, she pull away the oxygen tubes away from her nose and tried to hold
tight to them when I tried to put them back.
2/16
Finally she made it to the Chinese new year. She often kept her eyes open but
would not respond to others. I think she was in half coma since the mid-night.
Sometime later in the morning, she closed her eyes. She could open her eyes
when you called her, but she did not produce any verbal response. At 1:00, after
staying in the room for 27 hours (she wanted me not to leave the room and I
did not dare to leave the room), I felt like to go out. I left for home, leaving
her sister to keep her company. I returned to the hospital at 3:00 p.m., with
Joy.
Now it is 8:00 p.m. She is still in a deep coma. I don't know how long it will last. I call her name from time to time, but got never a response. She had two seizures this afternoon, not as big as the one on 11/30. I think both her kidneys and lungs are failing. I will stay up for another night sitting by her side and hoping she is able to open her eyes and take another look at me.
Jiang Nan
2/16
A little bit more than two hours after I sent some of you the last message,
Luo Huiling passed away. It was around 10:20 p.m. on 2/16. A nurse happened
to be in the room and I happened to be videotapying her. It was only a matter
of 2-3 minutes. I have been sitting by her bedside and I noticed some liquid
coming from her mouth. I cleaned it for her, but it kepe caming out. I also
noticed a drop of tear from both her eyes. I dried it for her. I noticed her
heart rate was only about 60. It used to be 80 or faster. Then I noticed that
she was not breathing. I told the nurse she passed away. The nurse was not sure.
She listened to her heart and then told me she did not hear any heart beat.
Another nurse came. She listened, but could not hear anything either. Luo Huiling's
lips became purple. I looked at my watch. It was 10:20 p.m. She passed away
in peace, not even with a single struggle. I am glad that her suffering has
finally come to an end. I called home and then Judy to ask her to drive Luo
Huiling's sister and Joy here. I contacted the furneral service to arrange for
the creamation.
I asked the nurses to clean her body. Her sister, Joy and Judy came. Then her
sister and I put on a new shirt, a new pant and a new pair of socks and shoes
for her. I talked with the nurse about what to do with her body. I held her
face for a few minutes to say good-bye. Then we left.
I don't feel sad. Luo Huiling received the best care one could possibly have
in her last days. She died in peace. She also died with deep appreciation. Many
friends in Tucson and State College helped take care of her since she was sick.
Many of our friends came to see her, all the way from NY, Delaware, DC, New
Jersey and PA. A lot of our friends spent hours talking with her over the phone.
She received dozens of get-well cards from our friends. She was in the prayers
and thoughts of hundreds of people. We also received approximately $3,300 in
donation from our friends, and some faculty members in the department of Psychology
and Language Center are helping us pay for the furneral service. I was always
with her, and did my best to take care of her. Her sister was able to come and
help take care of her.
We have 18 hours of videotapes of her. I will spend the coming weekend editing
them. I will try to put together a one-hour videotape and send it to our friends.
Her sister, Joy and I spent hours talking about her when we got home. None
of us wanted to go to bed. Joy is now sitting by my side when I am writing this
message. She wants me to add that we cried a lot. Joy also wants me to add that
Luo Huiling has been a good mom.
If you want to remember when Luo Huiling passed away. It was on Chinese New
Year. I have set up a Web page for her. You are welcome to visit it at http://www.personal.psu.edu/nxj6/Luohuiling.html.
Some of her pictures will be added very soon.
Finally, I want to take this opportunity to say thank you to all of those who helped us in various ways while she was sick and who had Luo Huiling in their thoughts and prayers.
Jiang Nan
