My Father Passed Away from Melanoma at age 87

Wen-Jian Han's obituary    

This past summer, my father’s nose kept bleeding. The doctors were afraid of doing a biopsy since he was over 86 years old with other problems, so nothing was done except for stopping the bleeding and using an antibacterial drug.  My brother was able to find a younger doctor a few months later who was brave enough to do a biopsy to figure out if it was cancer.  The result was cancer but we could not tell my father. We told him it was a polyp. Now at the end of the year, the tumor extended beyond his nose and was still bleeding, sometimes more, mostly a slow drip.  His doctor said surgery is very risky. He might not be able to wake up from surgery. They tried to organize a group of specialists to meet and discuss his situation, and then give us their recommendations.

    I flew to China on Monday November 18th, and did not get to my parents' home until the 20th.  I brought our Catholic Prayer cards, which I added into the crowded family altar, which included a long Tibetan Buddhist prayer and a few Han Buddhist statues, and a Taoism symbol.  My sister said all prayers are welcome here.  

     We all went to the hospital to visit my father right away. He was in bed, and I went over and hugged him. He held me really hard and started to cry.  My 88-year old mom was sitting on a wheelchair, and my brother, sister, and I all gathered around my father. 

     My father started to talk. First, he said his aide was so wonderful and he felt bad that she had to get up so many times during the night to help him. She had to help the nurse during the day and go out of the hospital to buy meals. The aide didn’t lose the opportunity to talk; she said she had to carry my dad to use the bathroom 7 or 8 times each night. Later, I found out that was a lie. She massaged my dad’s legs 3 hours a day so her hands hurt. Later, the physical therapist said the massaging was wrong due to my father’s high risk of blood clots. My dad used to go downstairs to exercise every morning at 6 AM until she came into his life a little over two years ago. He became more and more dependent on her, now his back failed so that he could not even stand up and needed her to carry him to the wheelchair. He could not walk anymore. Her pay started at 2700/month; my brother gave her 8000/month plus whatever my dad gave her for take-out meals...  

     Then he said he was sorry to burden my brother, so that my brother could not even find any social time to find a mate to get married. He was at work and home only. He is going to die alone since he was not married and didn’t have any kids. I said we, my sister and I, would take care of him. 

     Then, he talked about my mom so I pushed my mom over to him so he could reach her hand. My mom stared at him trying to figure out who he is.  My father did not look at her but held her hand saying sorry that he had to leave her behind. My mom didn’t say anything but tears ran down her cheek. When she looked at the aide, she stared at her with anger and she didn’t say a word. 

     My sister and I went back to the hospital and my brother was home with my mom. The first concern was why the aide was going out of the hospital to buy meals from the restaurant. The board above my father’s bed stated “Special Diet” since he has diabetes. The aide said the hospital food was no good and my dad could not eat it. I said the meals from the restaurant are not suitable to him, because they are high in salt, fat, and sugar. You could eat out but my dad needs to eat the hospital food. She said your dad tried but could not eat it, the rice was too dry and the noodles mush and they were tasteless. I said he needed the special diet. Did you ask what were his options? She said you could go ask the doctor. I went to the nurses station since it was right outside of the door. The nurse said all of the food was designed for senior patients. All our patients are seniors, but for your dad’s special diet, you should go ask his doctor. The nurse said, “by the way, where was your dad’s aide trained?" I said, “I assumed at your hospital since my father took her home from here. I went to the doctors office; there were about two dozen persons at their desks and computers, all facing the wall, with a large table in the middle so they just needed to turn around to have a meeting. My father has two assigned doctors, but all the doctors plus invited specialists sat around the table regularly discuss my father’s situation. Since there are new lab and the whole body CT scan results, they’re going to have another meeting next week to discuss what is best for my father.  Each time, the best is still do nothing.

     I walked into the office, a half dozen doctors were there and I didn’t know who was my father’s doctor. I said Hello, please tell me who is Wen-jian Han’s doctor? One of the young female doctors turned around and said she was one of them. I asked if I could talk to her, she said sure. I said my dad needed a special diet, could you tell me what it is? She said the nutritionist should have told my dad and his aide. I said, “ the aide has been feeding my father take-out food. She said that is not good to have daily, maybe once in awhile. He needs low salt, sugar, and fat, but needs high quality protein, vegetables and fruits. I said, “I know but they didn’t listen to me, can you write it down so I could go show them?" The doctor said she and the nurses did feel resistance from my father and the aide. Not sure why? She wrote it down and I took it to my dad and the aide. The aide said the dinner would come soon, why don’t you go see how special the food is and see if you could eat it. I waited outside of the meal room until all the orders had been picked up. Two didn’t show up so she delivered the food. Then I got a chance to talk to her, she said there’s a meal plan for my father but we decided not to order. The special meal was for diabetes patients. I said that I would ask my father to try the food. Do you have any extra meal I could buy? She said she always brought a few extras just in case. She and I went to my father’s room, I asked my father to try the rice to see if it was too dry and he said it was good. I asked him to try the special food tomorrow and he agreed. 

     The next day was raining, I went to Carrefour to buy a small food processor just in case my father could not chew the vegetables. Then I went back to the hospital to check how was the special food. My dad was happy and the doctor said she added two more vegetables after reviewing his case. Then the aide walked in and said the food was not impressive, she showed me some leftover vegetables. I said it looks good and healthy. She didn’t say anything. I also made some salmon chives, mushrooms, and tofu-stuffed pancakes for my dad, but he said to save them for the aide since she loves them. I said that I brought four to share with her as well.  My pancakes were spoiled and the maid returned them to me to throw away.  To make sure he continued his special food and repeat two more times because the aide repeated two times the special food was not good. My dad could not eat outside take-out food.  My father was upset and asking me if he needed to give me a medal award since I kept talking about the special meal. He tried a week and stopped. He told me he was not going to live that long, why bother, eat whatever he wanted to eat.  I gave it up too.

     The aide didn’t have any training to care for the patient, plus we all had trouble to understand her dialect; only my father could understand her. My brother said she went grocery shopping and refused to give my brother a receipt. Her cooking was high in salt and fat, she just could not change so my brother took over shopping and cooking for my parents. The aide just keeps my dad company, she wheels him out at 9 AM, and back at 11:30 for lunch. After lunch, she and my father went to the master bedroom to take a nap until 2:30. She wheels him out again if it is sunny. Every time, I called my dad, he said how much he was relying on his aide and how tired she was, sometimes she would sleep all day due to headaches. Her teeth hurt, my father paid her to go to a dentist, and paid her to see a doctor if she was sick. Her 80-year old mom is sick, my father gave her 1000 yuan to mail back home. She could also get prescription drugs in my father's company hospital, my brother said sometimes over 6000/month, all covered under my dad's insurance. Funny my mom could not since she has her own policy and her policy was not as good as my father.

     I kept reminding my dad that his favorite son is working night shifts and caring for them at the same time, I cannot say he was doing the aide’s job which would make my father angry. I just said he is older than his aide and he still smokes from his stress. He needs to care his son! 

     My sister came back a week earlier than me, I could not believe that my father asked her to clean the master bedroom’s bathroom since only the aide was using it. My father was using a potty. My sister didn’t complain and went to clean her bathroom and the other bathroom, and the kitchen, before my dad was admitted to the hospital. 

     I asked the physical therapist to see my father since he refused before. He was not friendly in the beginning, but the therapist was very patient. She explained why and how he lost his muscles and strength to the point he could not even get out of bed. She showed him how to exercise on his own with the aide's help, how to doing things on his own turn, since one of his back disks moved. She explained why he could not have the aide give him a massage. He needed to try to move around on his own, not lay in bed, or sit on the wheelchair all the time. She helped him left his legs and asked his aide how to help my father correctly since his aide had no training. 

     My sister and I tried to let the aide go, and find a trained one for my father, my brother did not think my father would let go and he was right. When I came back from the doctor's office, I saw my sister was kneeling at the end of my father's bed saying sorry to my father, my father said her sorry was not sincere.  The aide was facing the window crying, away from my sister, standing in front of my sister, next to my father's bed.  I asked my sister to get up, in my mind really wanted to drag the aide down to kneel in front of my dad. I said to my father, “you forgot your favorite baby girl (么妹)?  She just wanted to talk to you alone and get your attention.” My father said, “She and all of you tried to kick out my aide. You have no right.” I said, “dad you misunderstood, since the aide was so tired and could not sleep well, we wanted to help her and find another one to help her and give her a break. She has been with you 24/7 and she has her own husband, children, grandchildren, and a great grandchild to see.  Later on in my father's better mood, he said I should not go directly talking to his aide offering another aide. He said, "She was lying about getting up 7 or 8 times a night,  she was complaining how tired she was just hoping you could give her a "red envelope" with some American dollars."  I said, " I will not give her a penny, she is lucky that she is still here." My father said I am too Americanized and did not know how everything works in China.  Everyone around him wants money. 

     When the nurse came in to take his blood pressure, my father started to complain to the nurse. When the nurse asked his name, he showed her the name tag on his wrist. The nurse insisted that he answer the question but he refused. They are lazy and tried to have his aide do their job... I ended up following the nurse out apologizing and brought some chocolate to the nurses station the next day.

     My father expressed anger to me since I came home the least. He said, “ I praise you for bringing up 3 excellent sons including one resident doctor, one medical student, and one pharmacy student, but I am sorry that I cannot live long enough to see them again. Since you are here for only a very short visit, I imagine that you have to go to visit your uncles and aunt, so you would be hardly spending any time with me. I said, “ Dad, I am sorry that I can’t quit my job like my sister did and I can’t afford it. This trip, I am not going to Zigong to see my uncles and aunt, and I plan to visit you every day for my three weeks here. Then he said, “you should go to see your uncles and aunt and give them some money, we owe them too."  The truth was my grandmother, aunts, and uncles cared for me until I was almost 10 years old, and I did not have to do anything, not even know how to bread my long hair, which my grandma was doing it every morning before I went to school.  I went back to my parents and had to learn helping them watch my younger brother and sister, doing most house chores. I cried a lot and I wanted to go back to my grandma.  My grandma missed me as well and finally came to live with us and I did my best caring for her, she died a month before my College National Entry Exams.  I was with my parents less than 7 years before I went to college.  I finally understood my parents when I entered the work force, still swear to myself that I will care for my own kids. I do not have much emotional attachment to my parents like my sister who stayed with my parents until she was 26 years old when she got married. 

     The next day, I went to the hospital by myself, my dad, and the aide were complaining about my brother and my sister, how bad they took care of my mom. My mom lacked protein because they didn’t feed her meat. They both cooked terrible food. Only his aide could care for my mom the best!  My dad was trying to persuade me to keep his aide for my mom after him.  I did not object but also looked around myself. I found one in the hospital who came from my mom's hometown Neijing. I also introduced him to my brother. He said his younger sister would be the best choice for my mom.

     When I was visiting my dad in the hospital, my dad wanted to give his aide a break and have me to taste what his aide was doing.  He never asked once if I slept at night since the time difference between China and America. I could not sleep at night since it was daytime in America, it was my sleep time everyday when I visited him.  When the lunch was ready, my dad wanted me to help him move from the bed to the wheelchair, I was a little nervous so I asked the aide to help me. Especially in the bathroom, I don’t want to drop him.  I have to remind my dad that I was close to 60 years old, I had never done any of the aide's work before just like him. He never cared anyone in his life.  He said he just wanted me to feel what his aide was doing, respect her!

     My dad wanted me to share the food with them, he said he could not finish his meal anyway. The aide was feeding my dad; my dad wanted me to feed him so the aide could eat. The aide was trying to stop my dad but my dad insisted.  The doctor told me my father can eat on his own when she saw me feeding him.  I told her it was OK, he missed me.  After the lunch, my dad wanted the aide to take a nap, and asked me to wheel him out for a walk and he was nice to me. He showed me the hallway where "dead  people wheel down from here."  Since he talked about death, I asked him if he was really sure not to keep his ashes.  My mom already bought their place in Wenshu Yuan Monastery (文殊院) to store their ashes.  He said "your mom wanted to stay there."  I asked him if he wanted to join our family in the future since we have not buy our plots yet.  He said it would be too expensive for me, I said it would not be expensive to ship ashes.  My mom and my brother could join us too in the future, do not worry about money, you have 3 grandsons and they will have money to pay back your care to them in America. After talking to my dad, he did not say anything about his hometown where his parents and sister are buried; he did not want to go back, not even his ashes.  It really made me think that my father was really fighting for his own battles, all he believed was his aide cared for him. I later apologized to the aide and told her experience was better than trained certification.  She then told me another lie, she had helped over 20 patients, she told my bother 8. There is no way to check but we knew at least one patient for sure.

     I left before dinner, I took the new subway back home as I came in the morning, it came every 2 minutes for less than $1. My brother said my dad’s nose was bleeding again, he was going to deliver the special self-absorbent cotton pads. The doctor was waiting for these special cotton pads. It required storage in the cooler. Cost over 500 yuan a piece and my dad’s insurance does not cover them. I said that I would go with him so he could drop me off and I could deliver it faster while he parks his car in the underground parking garage. It is an hour each way. 

     When I got there, I could see the aide was helping my dad, no doctor or nurse, the doctor waited for a half hour and left. I went to the doctor’s office, one of the doctors called and told me to go back to my dad. I came back and started to hold my dad’s nose to stop the bleeding and the bleeding slowed down a lot. The doctor finally came and forced the special cotton into his nose and made his nose bigger. My brother and I went back late and my sister and my mom waited for us for dinner. I went to bed right after. 

     The next morning I went back to the hospital, my dad said his nose was bleeding again but he and his aide managed. He coughed up a big black piece. The aide was poking it and it was really hard. I said, “did you save it for the doctor?.” No, they didn’t think the doctor was interested. My dad was dizzy in the morning, I noticed his little package of pills from last night still sitting there, the aide said my father refused to take them. But she already gave my father pills from home for dizziness. I was upset since she said that she knew my dad better than the doctor. Also, I don’t think she measured how my father’s water intake and urine output; she reported to the nurse the same numbers every day. The nurse just comes in to scan my dad’s code on time, put the old-fashioned thermometer under my dad’s arm, often doesn’t come back for an hour until he forgot and lost the thermometer and ended up looking all over for it. Sometimes even the blood pressure was checked by the aide. The scale is outside in the hallway, the nurse came in asking what is his weight.  My father could not stand up on the scale so he could not weigh himself.  To get my father's weight, the aide had to push my dad's wheelchair upstairs by elevator, there was a weight station there, put the wheelchair and my father on it, then minus the wheelchair weight.  The aide did not want to do it often so she was given the same number to the nurse.  The cleaner was cutting corners and I had to chase him down to ask him to come back to finish his job. No wonder my dad is complaining!

     My dad told me that his next door neighbor Muslim Ma passed away, his wife sold their home and moved away. He missed them, both good times and bad times, they worked together all their life. He was always above my dad, since he was a communist party secretary, this position is always higher than directors.  He made sure my dad never passed him except he died first.

     When my dad just finished college working under him in the field, my dad often introduced him to the local agencies. They respect the leader, after initial handshake, the leader was left alone. My father was very popular and blended in anywhere he goes. Life was hard back then, not much meat to eat, once a month was lucky in the field. As a Muslim, he and his family received special coupons for beef and lamb, so they ate more meat in general so they got more from the government. His wife was Han so she got pork coupons too.  We as majority Han didn’t get any beef or lamb.  The pork coupons we received were fewer.  In the field, there were not many places to have beef or lamb. The cow is the farmer's family member. Most Han does not like lamb, which means he would not have any meat at all. It could be months at a time doing fieldwork. So my dad was thinking to do him a favor. He told the kitchen staff to hide the pork and vegetables under his rice, topped with more vegetables. Ma ate all of his meal, my dad was very happy to see that he ate the whole thing and asked him if everything was good. He said very good. Then my father said, “let me wash your dishes.” Ma said “no no, I wash my own dishes. I don’t want the locals thinking I am abusing my power.” My father smiled and thought about the real reason. The pork dish was very greasy, while a vegetable dish is not. He didn’t want anyone to see he ate pork. He didn’t know my father was the one who arranged the whole thing. My dad didn’t stop there, he switched the beef and pork on the cutting boards for one of the holiday meals. That put him in very very hot water! Ma was so upset, my father watched him clean the cutting board over and over again with boiling water. Even today, my father didn’t think it was a big deal. The way he washed the board showed his disrespect for the pork eaters. He felt offended. Ma gave my father trouble ever since as if my father never grew up, always a naughty boy. Since they were our neighbors, my father asked his children if they ate pork. His children said yes, of course, we eat pork.  
     Two weeks went by very fast, we were still waiting for my father's options.  The ear, nose, and throat department finally were going to discuss my father's case, I confirmed with my father's doctor that I would join them and I had to be there around 7:30 AM the next day.  I took a taxi there since the subway does not start till 6 AM and I needed 1 hour to get there.  When my father's doctor took me to the ear, nose, and throat department at 8 AM, I was told to wait outside with other family members in the hallway. No chairs were out there for a hour.  I did not see anyone except my father's doctor who came out, she said "we will have to wait for the anesthesiologist to see if it is safe to do the surgery."  Later on that day, a young anesthesiologist came to ask some questions to my father and left.  The next day, the same results came out just like August before the biopsy was done, high risk, let the patient and his family decide.  Back in August, my father was stronger, the cancer was too small to see, now the cancer grew out of his nose.  Of course, we decided not to go through the surgery and signed a paper.
     We were hoping the Oncology could step in earlier, but it had to be after we rejected the surgery first. My brother went ahead and spent over 300 yuan to book a first-class Oncologist in the International section of the hospital to see my father on December 3.  Since the doctor did not want to see my father in person, we did not wheel my father there, just brought the biopsy result and CT scan films to see him. When we went inside, the old Oncologist had two younger assistants with him, he looked at the film and said we needed two more tests, BRAF V600E and C-KIT Exon 17, about 2 minutes.  Results will come in two weeks.
     The next day, my father's doctor told us that the Oncologists would discuss my father's case the next morning and get my father ready at 7:30 AM.  I asked again to make sure they were going to see my father, she said she also asked the same question and they told her yes.  My brother drove me there the next day and the aide already put my father on a wheelchair ready to go, from 14th floor, down to the 6th floor. It was breakfast time there, so the hallway was crowded with people passing by to get their food. Again, we waited outside for a hour. When our doctor came out, she said we needed to do a PET scan.  The next day, I went to the hospital, my father's doctor ordered three more tests BRAF V600K, CKIT 9,11 and NRAS.  The results came back that there were no mutations so the target treatment was not suitable for my dad.  We also rejected the radiation for melanoma due to the risks.
     I came back to the USA already before my dad found a suitable treatment. Immunotherapy was considered last and my dad went through more tests, but he got another lung infection, so everything stopped after that. The doctors recommended palliative care since my dad was too weak and he did not have much time left.
     My sister cancelled her return ticket and she decided to stay there to keep my dad company.  She and my brother also were looking for an aide for my mom. The interviews were set up after the Chinese New Year, but the Coronavirus stopped the whole thing, Wuhan locked down first, the whole country locked down as well. Stay home unless you have to go out.
     My father was not doing well, his blood pressure was dropping, so his high blood pressure drug stopped. His nose was still bleeding regularly so he was having anemia. His vital signs were not good. He also started to experience pain, he closed his eyes since they were hurting, he could not eat solid food anymore. He slept most at daytime, not at night. he was calling my mom. The doctor agreed that my sister could also stay by my father's bedside along with the aide at night, so she did not have to come and go daily in fear of bringing Coronavius inside of the inpatient hospital. 
     My brother was able to bring my mom over to see my dad on the day before my dad died, my mom was not able to understand what was going on, my dad's eyes moved a little bit. The next morning around 4 AM, my dad stopped breathing. It was March 1st there, still 4 PM Feb 29th here, when my brother called me. I was able to video chat with him while he was cleaning my dad's room since my dad had been there since last November and accumulated a lot in the closet.
     My sister already took my dad away to a private memorial place, she did not want anyone to touch my father, not even change his clothes. She said it has to be after 36 hours. She wanted to stay with my father and pray for 3 days and 3 nights, helping my father get to Heaven.  Since the Coronavirus shut down, no gathering was allowed so she could not invite Buddhists over.  My brother tried to ask her to go home with him but failed. I was very concerned since the place locked down at 9 PM, no one would be there, not even a security guard.   There are other bodies in the other rooms next to my father's room. She turned off her phone as well.

     

     It was more surreal to me that my father was gone since I was not there. I dreamed about him before he died -- he was in bed holding a baby and playing with the baby happily.  My mom threw a blue towel over to my sister.  I was not interacting with them, only like a bystander watching over them.  I was very emotional at noon on my walk, I was alone walking, I looked up at the sky and I felt for my dad, I really felt him above me.  I started to cry while I was walking.  I did not dream about my dad, but dreamed that I went back to the old apartment building when I was still in high school.  I saw my mom was cleaning and organizing. I went over and saw they actually kept some of my things, which was shocking to me.  Then I drove my mom because my mom wanted to give away my dad's clothes, I did not know the people, but saw two more nice pants so I walked out of the car and added them to the pile. I then dreamed that I was climbing a hill, on the top, it was flat and a lot of kids were playing soccer, or just fooling around.  I walked around waiting for my sons, I also noticed some pretty mushrooms on the cliff.  I started to worry about my sons so I walked back looking downhill, I saw a group of kids fooling around while climbing, one girl fell off backward.  I was trying to call my son, but I forgot my cell phone at home, so I was able to borrow one from another mom, but I did not remember my son's number.  I had to give up -- all a dream.
     I was considering booking a flight back to visit, but no flights were available until the end of March.  It will also depend on how the Coronvirus spreads in the US.  My father was cremated the 3rd day and he wanted his ashes scattered. My brother was suggesting to keep part but scatter some of the ashes. My sister wants to keep him and my mom together in the Wenshu Monastery.  My mom's younger sister's husband's ashes are already there. They bought the places a long time ago. But only keep the ashes for 70 years like the rest of the properties in China and expires in 70 years.  My brother stored my dad's ashes next to the crematory right now before we make any decision.

Wenshu Monastery (文殊院) - Chengdu, Sichuan, China.

     My brother said he would let the aide stay to take care of my mom, she agreed to a pay cut to one-half since my mom could still walk and eat by herself.  She could also help with some simple tasks such as cleaning vegetables, remove peas from peapods.  My mom is going to be 89 this March and she is like a little kid again. Although my mom did not like her, tried her best to kick her out, she was not a stranger to her or us. We do not know how she was going to react to a new stranger. Not to mention it was my dad's dying wish that we keep her for my mom. My dad wanted us to keep her employed. My brother did install surveillance cameras just in case.

     I went back to my blog to read My Father's Roots.  I enjoyed listening to the songs my father use to sing, sadly I have never stepped into my father's hometown Yahozhou (耀县) or his birth place Shanyang (山阳县).  Not sure when since I only have 3 weeks vacation and I need to spend the time with my mom, my 93 year old uncle and 91 year aunt.  They do not have much time left.  I am also grateful to my husband's understanding my situation that I could not be with him or his aging parents. Fortunately, my oldest son Jonathan chose to stay close to his grandparents for his 3-year residency after he finished his medical school.  He could go visit them on the weekends and holidays.