Sunday morning, I got up at 7 a.m. and went to check in on my dad. He was awake, having not being able to sleep, and I could tell that he was feeling really uncomfortable. I went out to buy dou jiang and xie ke huang for breakfast.
After eating breakfast, I went to the bathroom to do my business. And two minutes into my prime reading time, I hear these voices from outside calling my name. My dad calls to me and says they're here. I was irritated because it's 10 am and they just drop by unannounced, and not to mention I'm busy.
So I let them in and tell them that my dad didn't sleep last night. They're like, "Why didn't he sleep? How come you didn't sleep?" I was like, because he kept thinking about Medicare!
They were going to leave and come back later, but since my dad was also looking forward to my first aunt making wonton, I suggested they stay. My dad corrected me, wonton and bai cai xi-fen.
Making wontons in a small apartment with limited dishes and tabletop space is sooo inconvenient. We made do with what we had, but this involved washing every possible bowl or dish multiple times because you needed them for prep and for eating. I think we only had four small bowls and a few plates.
My second aunt went out to get some plastic disposable bowls and a gigantic package of take-out chopsticks. I think she's the queen of low-maintenance eating. She'd rather not deal with cleaning up or cooking.
My first aunt, on the other hand, was busy washing, chopping, cooking. I helped her in exchange for her teaching me how to make Liu-jia wonton. You could tell which ones I wrapped.
When we finally sat down to eat lunch, my dad was quite pleased. He said that within the family, he was the one who would make wonton, and he taught my first aunt. They said that my first aunt had it rough. As the eldest daughter, she would cook and clean, and when she wanted to get married, my grandfather wouldn't let her.
I asked her if nai-nai taught her how to cook. She said nai-nai didn't cook, so it was just something that they had to figure out growing up. I wondered what it would be like if your parents didn't cook, especially back in their time after the Communist Revolution. And then I remembered my dad telling me when we went to eat at Kao Chi, how he wouldn't do his homework and got his friends to help him pass his classes.
I asked him what he did with his time. He said, "Dream." I laughed and said, what did you dream about? He replied, "I dreamed about food because we were so poor, a lot of the time we were just hungry."
My dad ate quite a bit of the wonton and bai cai xi-fen, so we were all quite pleased. But we hardly made a dent in the food. There were three big plates full of uncooked wonton and a large bowl of the xi-fen left. I didn't know where we were going to put all of this stuff. After all, all we had in the apartment was a small mini-fridge. The freezer section is smaller than a toaster.
My aunts left after my dad went back to bed. To avoid what happened this morning, I asked them to call us before they come tomorrow.
My dad took a nap and I cleaned up a bit. But seeing all the leftovers, I had to figure out what to do with them. So I took the MRT to the Carrefour in Kunyang to pick up some plastic food containers and ziploc bags. I got lost getting there and had to get a cab to get there. I realized then that there was no way I was going to make it back to the MRT stop with groceries. So I asked around which bus would take me to Taipei 101 and took the 281 bus back.
Along the way home, I picked up a pork chop bento box for my dad, which he liked. After packing away all the leftovers, I went to sit with him. He kept asking me why my mom hadn't called yet. We tried several times to call the apartment in Shanghai, but no one picked up.
We looked all over for her cell phone number. I remembered I had it written down on a piece of paper in my passport wallet. At that point, I realized I couldn't find my passport! I tore apart the apartment several times looking for that thing, but no luck.
Finally, I had to wake up my girlfriend in Los Angeles to get my mom's cell phone number. I dialed the number and my mom picked up. I told her we've been trying to call her and asked where she was. She said she was on a tour!
I passed the phone to my dad, and he talked to her less than a minute when, all of a sudden, he started crying. I was shocked. He handed the phone back to me and my mom asked me what was wrong. I didn't know, and of course, she started asking, "What did you do? Did you get in an argument with him? Did you ..."
To change the topic, I asked my mom if she had my passport. When she told me no, I started to worry. She told me to check under the sofa bed. Then she told me to stop fighting with my dad.
When I got off the phone with her, I asked my dad what was wrong. He told me that he missed my mom!
Jeez, am I such bad company?
Well, it turns out my passport wallet was under the couch. I called my mom back and told her I found it. Then I told her that we missed her, and she replied, "Hu suo ba dao."
Go figure.
Wednesday, March 28, 2007
Tuesday, March 27, 2007
The Aunties Arrive
On Saturday, I got up at 8 am, later that usual, because I wanted to rest. When I got up to go to the bathroom, the phone rang. It was my first aunt from Toronto. In a loud, booming voice she said, “Jeff, zhe si da niang-niang.” I had to hold the phone away from me because her voice was so loud. She told me that she and my second aunt from San Jose were going to come over at noon.
After hanging up, I started getting ready. By his request, I made a seafood omelette for my dad, using the toppings from last night’s pizza. It was a failed attempt at an omelette, as the non-stick pan lost its non-stickness and it turned out to be more of an egg scramble. I heated up the now-turned cheese pizza for him to eat as toast and poured him a glass of organic Concord grape juice. He didn’t finish the eggs – as it wasn’t quite fluffy enough – but he did have a glass of milk after his grape juice.
My dad took a nap to save up energy for the later arrival of my aunts. I too got ready – I swept the floor, cleaned the toilet and the bathroom sink, washed the dishes, did a load of laundry. I know that if anything is out of order with anyone in my family, I won’t hear the end of it for days ... or worse, years.
They arrived at around lunchtime, bringing with them a bag of about 20 lianmu fruit, a box of ginseng tea, six bottles of this Isotonix vitamin drink powder, in addition to the organic penne pasta, tomato sauce and pumpkin spice granola that I had requested from my sister. We could have opened up a supermarket in our one bedroom apartment.
My first aunt from Toronto and I went out to buy lunch. I remember my mom saying that there was a dao xiao mian place around the corner. So we went there and me, not knowing how to read Chinese except niou rou mian, ordered that for me and my dad. Plus, he told me yesterday that he wanted to eat some beef. This little thing turned out to be one of those moments you never hear the end of.
After lunch, we went to Taipei 101 to have some coffee and hang out. When my dad went to the bathroom, my aunts were like, “Jeff, you shouldn’t let your dad eat anything too salty." I said yeah, I know. They said, well, you shouldn’t have let him eat niou rou mian. Or next time dilute the soup with water. And when you go out, make sure you ask them not to put any MSG in his food …
Oh boy ... this is going to be a long week.
Around dinnertime, we thought it'd be better to just eat in at Taipei 101. I surveyed the fourth floor for restaurant options that fulfilled my dad's request: meat. My dad told me the day before that he had been wanting a good steak, so we ended up going to Tony Diamond’s Italian Restaurant in Taipei 101. All their steaks came with sauce and so he ordered one with pesto. I requested that the sauce be put on the side.
Luckily I did because he didn’t like the pesto, thought it was too salty. He would’ve been fine with just eating the steak, but he had dropped his fork and well, he then had a grudge. I picked it up and a minute later he said where’s the fork that I dropped. I said that I had it. He said that the manager was poorly trained. I asked why, and he replied that the manager saw him drop his fork and should have come over to replace it. Instead, the manager just walked on by. My dad then had the look. The look where he’s scanning the room looking for a target.
Well, a few minutes later, he called over the waitress and told her: 1. The pesto was too salty 2. The corn wasn’t cooked enough and 3. The string beans were too firm.
The manager came, apologized and replaced the pesto sauce with a mushroom sauce (they didn’t cook the vegetables again). So when he got the sauce, I tasted it and said that it had a sweet flavor, but was still kind of salty, like a gravy.
He proceeded to dunk pieces of his steak into this gravy. So I said, hey, you should be careful, it’s still salty. He looked at me and just waived his hand like, Don’t tell me not to eat it ‘cuz I’m gonna eat it; it’s just a little and it’s my body and I want to do what I want. Just fuhgeddaboudit.
I looked around and there was no one there to back me up ...
It was a pretty good steak for NT$600.
That night, my dad couldn't sleep. He wasn't sure whether it's because of the coffee he drank or what. I heard him get up at 2 a.m., then again at 4 a.m. when he took leftover niou rou mian out of the fridge to eat. He was fiddling with the plastic bag surrounding the container and it quickly became annoying. I got up and thought Oh my God, he's trying to cook. I told him to go sit down, and heated up the noodles for him although I was half asleep.
When I asked him why he couldn't sleep, he said he was engrossed in thinking about going back to the U.S. in October, when he turns 65 and qualifies for government Medicare insurance. After talking with my second aunt, he had suddenly become interested.
Prior to her arrival, she mentioned this to me over the phone and I was instantly aware that she would plant this in his mind. I don't know why, but I just had this feeling. I asked my dad a few weeks ago if he wanted to move back and he said that he didn't want to. "Never," is what he said. He didn't want to live the kind of life he had in the States, where one has to struggle to maintain their quality of life.
I remember on Christmas Eve in Shanghai, my parents took me to eat niou rou mian at this tiny shop. The owner and his friends who ran it seemed to all be from Taiwan. But they were like my dad: They moved from Taiwan to the U.S., worked, retired and moved to Shanghai, while their kids stayed in the States.
The owner of that niou rou mian shop also said he would never go back for the same reason. Shanghai, to them, is a place where they feel comfortable, and can relax, and pursue small business ventures that won't put them out on the street if they didn't succeed.
But he changed his mind about moving back to the States. He is now considering it. Not that I'm advocating that choice, but sometimes I wonder what my aunt said to him. In Chinese, you say that she is li hai.
I just wished he didn't lose a whole night's sleep over it.
After hanging up, I started getting ready. By his request, I made a seafood omelette for my dad, using the toppings from last night’s pizza. It was a failed attempt at an omelette, as the non-stick pan lost its non-stickness and it turned out to be more of an egg scramble. I heated up the now-turned cheese pizza for him to eat as toast and poured him a glass of organic Concord grape juice. He didn’t finish the eggs – as it wasn’t quite fluffy enough – but he did have a glass of milk after his grape juice.
My dad took a nap to save up energy for the later arrival of my aunts. I too got ready – I swept the floor, cleaned the toilet and the bathroom sink, washed the dishes, did a load of laundry. I know that if anything is out of order with anyone in my family, I won’t hear the end of it for days ... or worse, years.
They arrived at around lunchtime, bringing with them a bag of about 20 lianmu fruit, a box of ginseng tea, six bottles of this Isotonix vitamin drink powder, in addition to the organic penne pasta, tomato sauce and pumpkin spice granola that I had requested from my sister. We could have opened up a supermarket in our one bedroom apartment.
My first aunt from Toronto and I went out to buy lunch. I remember my mom saying that there was a dao xiao mian place around the corner. So we went there and me, not knowing how to read Chinese except niou rou mian, ordered that for me and my dad. Plus, he told me yesterday that he wanted to eat some beef. This little thing turned out to be one of those moments you never hear the end of.
After lunch, we went to Taipei 101 to have some coffee and hang out. When my dad went to the bathroom, my aunts were like, “Jeff, you shouldn’t let your dad eat anything too salty." I said yeah, I know. They said, well, you shouldn’t have let him eat niou rou mian. Or next time dilute the soup with water. And when you go out, make sure you ask them not to put any MSG in his food …
Oh boy ... this is going to be a long week.
Around dinnertime, we thought it'd be better to just eat in at Taipei 101. I surveyed the fourth floor for restaurant options that fulfilled my dad's request: meat. My dad told me the day before that he had been wanting a good steak, so we ended up going to Tony Diamond’s Italian Restaurant in Taipei 101. All their steaks came with sauce and so he ordered one with pesto. I requested that the sauce be put on the side.
Luckily I did because he didn’t like the pesto, thought it was too salty. He would’ve been fine with just eating the steak, but he had dropped his fork and well, he then had a grudge. I picked it up and a minute later he said where’s the fork that I dropped. I said that I had it. He said that the manager was poorly trained. I asked why, and he replied that the manager saw him drop his fork and should have come over to replace it. Instead, the manager just walked on by. My dad then had the look. The look where he’s scanning the room looking for a target.
Well, a few minutes later, he called over the waitress and told her: 1. The pesto was too salty 2. The corn wasn’t cooked enough and 3. The string beans were too firm.
The manager came, apologized and replaced the pesto sauce with a mushroom sauce (they didn’t cook the vegetables again). So when he got the sauce, I tasted it and said that it had a sweet flavor, but was still kind of salty, like a gravy.
He proceeded to dunk pieces of his steak into this gravy. So I said, hey, you should be careful, it’s still salty. He looked at me and just waived his hand like, Don’t tell me not to eat it ‘cuz I’m gonna eat it; it’s just a little and it’s my body and I want to do what I want. Just fuhgeddaboudit.
I looked around and there was no one there to back me up ...
It was a pretty good steak for NT$600.
That night, my dad couldn't sleep. He wasn't sure whether it's because of the coffee he drank or what. I heard him get up at 2 a.m., then again at 4 a.m. when he took leftover niou rou mian out of the fridge to eat. He was fiddling with the plastic bag surrounding the container and it quickly became annoying. I got up and thought Oh my God, he's trying to cook. I told him to go sit down, and heated up the noodles for him although I was half asleep.
When I asked him why he couldn't sleep, he said he was engrossed in thinking about going back to the U.S. in October, when he turns 65 and qualifies for government Medicare insurance. After talking with my second aunt, he had suddenly become interested.
Prior to her arrival, she mentioned this to me over the phone and I was instantly aware that she would plant this in his mind. I don't know why, but I just had this feeling. I asked my dad a few weeks ago if he wanted to move back and he said that he didn't want to. "Never," is what he said. He didn't want to live the kind of life he had in the States, where one has to struggle to maintain their quality of life.
I remember on Christmas Eve in Shanghai, my parents took me to eat niou rou mian at this tiny shop. The owner and his friends who ran it seemed to all be from Taiwan. But they were like my dad: They moved from Taiwan to the U.S., worked, retired and moved to Shanghai, while their kids stayed in the States.
The owner of that niou rou mian shop also said he would never go back for the same reason. Shanghai, to them, is a place where they feel comfortable, and can relax, and pursue small business ventures that won't put them out on the street if they didn't succeed.
But he changed his mind about moving back to the States. He is now considering it. Not that I'm advocating that choice, but sometimes I wonder what my aunt said to him. In Chinese, you say that she is li hai.
I just wished he didn't lose a whole night's sleep over it.
First Week Back With Dad: Part II
On Friday, my dad had for breakfast orange-mango juice, a piece of toast and two eggs over easy, by request. For me, breakfast is the easiest meal of the day to make. I think in a previous life, we must have been farmers because my family loves to eat eggs. I once asked my sister the most she ate in one day. She said she had 8!
After breakfast, he asked for some pineapple. My mom had cut some up for him yesterday morning. About an hour later, he complained about his mouth hurting and bleeding. I put two-and-two together and I realized why he felt the liang mian the day before was spicy. His mouth was bleeding then too. He had eaten pineapple before lunch so obviously it was this fruit that was causing him so much pain. I pointed this out to him and we both agreed that he was not to eat anymore.
For lunch, I figured he wouldn't want anything hard or would require a lot of chewing, so I went out and got shui jiao from this place next door. They make great baozi and frozen dumplings for you to cook at home. I also made a kaiyang danhua soup, to balance it off. My dad had 7 jiaozi and two small bowls of soup. It seems like he was getting his appetite back.
Later that afternoon following his nap, I wanted to go to Bo Ai Lu, Taipei's camera district, to buy some black and white film. My dad said he would come along, so we took the #22 bus to Taipei Main Station and walked 3 blocks to the district. On the way there, my dad tried out a few canes, and bought a collapsible one for NT$400. It's kind of cool - it pulls apart into four pieces which you fold into a bag. Then when you take it out, it snaps together by itself.
When we got to Bo Ai Lu, my dad said he would wait for me at a place around there and have a snack. I told him that I would walk him, that way I would know where he is. He insisted that I don't, saying that I would be wasting time by going with him, and to just call when I'm done.
About an hour later, after successfully navigating about 30 shops, I called him to see where he was so that we could go eat dinner. I called about 4 times and no answer. Then on the fifth try, he picked up. I asked him where he was. He said "McDonalds." McDonalds!!!
After what happened the day before, I was really pissed off. Fuming. I got there and he was sitting reading a newspaper. I asked him, of all the places here, why did he choose McDonalds? He asked me what the big deal was.
I said, "You know it's not good for you."
He replied, "All I'm having is a snack."
An ice cream sundae, half a chicken sandwich and a drink at 5 p.m. is not really a snack, is it? I said I felt like he was trying to sneak a trip to McDonalds because he knew I wouldn't approve. And then I told him I was particularly incensed because we were supposed to go eat pizza after going to Bo Ai Lu. He said that we could still go.
So we took the MRT to the Sun Yat-Sen Memorial and I brought him to this place called Capone's. The place wasn't gangsta, but I felt like cappin' someone. We started arguing again after sitting down. I told him that if he wants to eat hamburgers, that's fine. It's his body, after all. But of all the places that he could eat at, why does he choose the place with the worst food for him?
We ordered a large seafood pizza, a soup for him and a salad for me. He had two slices of pizza and ate most of the soup. It was actually pretty decent thin-crust pizza. At around 7:30 p.m., more people started coming in. The waiter said that there was a band playing at 9:30, but we left at 8 p.m.
When we got home, I gave him his medicine, and that was a struggle. He's supposed to be taking 3 tablets of Capecitabine, 1 tablet of Tramal Retard, 2 tablets of Magnesium Oxide, and one Prometin. He just wanted to take the Capecitabine. He reasoned that he wasn't in pain, he was pooing normally, and he wasn't feeling nauseous. My dad added that the Tegafur/Uracil and Thalidomide trial didn't allow him to deviate from his prescribed regimen, but now he can.
Thinking about how he's been doing, and how his appetite has been pretty good, I told him fine. I've also seen how the drugs have been controlling him and making him feel just plain uncomfortable. We ultimately want him to be comfortable, right?
Right. And ultimately, I wanted some sleep. Because the next day, the aunties were to arrive ...
After breakfast, he asked for some pineapple. My mom had cut some up for him yesterday morning. About an hour later, he complained about his mouth hurting and bleeding. I put two-and-two together and I realized why he felt the liang mian the day before was spicy. His mouth was bleeding then too. He had eaten pineapple before lunch so obviously it was this fruit that was causing him so much pain. I pointed this out to him and we both agreed that he was not to eat anymore.
For lunch, I figured he wouldn't want anything hard or would require a lot of chewing, so I went out and got shui jiao from this place next door. They make great baozi and frozen dumplings for you to cook at home. I also made a kaiyang danhua soup, to balance it off. My dad had 7 jiaozi and two small bowls of soup. It seems like he was getting his appetite back.
Later that afternoon following his nap, I wanted to go to Bo Ai Lu, Taipei's camera district, to buy some black and white film. My dad said he would come along, so we took the #22 bus to Taipei Main Station and walked 3 blocks to the district. On the way there, my dad tried out a few canes, and bought a collapsible one for NT$400. It's kind of cool - it pulls apart into four pieces which you fold into a bag. Then when you take it out, it snaps together by itself.
When we got to Bo Ai Lu, my dad said he would wait for me at a place around there and have a snack. I told him that I would walk him, that way I would know where he is. He insisted that I don't, saying that I would be wasting time by going with him, and to just call when I'm done.
About an hour later, after successfully navigating about 30 shops, I called him to see where he was so that we could go eat dinner. I called about 4 times and no answer. Then on the fifth try, he picked up. I asked him where he was. He said "McDonalds." McDonalds!!!
After what happened the day before, I was really pissed off. Fuming. I got there and he was sitting reading a newspaper. I asked him, of all the places here, why did he choose McDonalds? He asked me what the big deal was.
I said, "You know it's not good for you."
He replied, "All I'm having is a snack."
An ice cream sundae, half a chicken sandwich and a drink at 5 p.m. is not really a snack, is it? I said I felt like he was trying to sneak a trip to McDonalds because he knew I wouldn't approve. And then I told him I was particularly incensed because we were supposed to go eat pizza after going to Bo Ai Lu. He said that we could still go.
So we took the MRT to the Sun Yat-Sen Memorial and I brought him to this place called Capone's. The place wasn't gangsta, but I felt like cappin' someone. We started arguing again after sitting down. I told him that if he wants to eat hamburgers, that's fine. It's his body, after all. But of all the places that he could eat at, why does he choose the place with the worst food for him?
We ordered a large seafood pizza, a soup for him and a salad for me. He had two slices of pizza and ate most of the soup. It was actually pretty decent thin-crust pizza. At around 7:30 p.m., more people started coming in. The waiter said that there was a band playing at 9:30, but we left at 8 p.m.
When we got home, I gave him his medicine, and that was a struggle. He's supposed to be taking 3 tablets of Capecitabine, 1 tablet of Tramal Retard, 2 tablets of Magnesium Oxide, and one Prometin. He just wanted to take the Capecitabine. He reasoned that he wasn't in pain, he was pooing normally, and he wasn't feeling nauseous. My dad added that the Tegafur/Uracil and Thalidomide trial didn't allow him to deviate from his prescribed regimen, but now he can.
Thinking about how he's been doing, and how his appetite has been pretty good, I told him fine. I've also seen how the drugs have been controlling him and making him feel just plain uncomfortable. We ultimately want him to be comfortable, right?
Right. And ultimately, I wanted some sleep. Because the next day, the aunties were to arrive ...
Monday, March 26, 2007
First Week Back With Dad: Part I
Hi everyone, I'm in Taipei right now. I arrived last Monday. A lot has happened in the past week, so I have a great deal to write about. I just haven't had a lot of time to write about all this.
I arrived Monday at 6 a.m. and took the bus to the Sun Yat-Sen Memorial. From there, I took a short taxi ride to Wu Xing Road, where my parents are renting an apartment. From the pictures, you can tell that it's not that big, but a pretty decent size for two people.
I walked in and saw my dad sitting at the desk in the bedroom. I went to hug him, but to be honest, I was really shocked. When I got closer, I saw that he had lost so much weight. I couldn't even recognize him - he looked like he just got out of a concentration camp.
He was skin and bones: his jaw and chin was smaller, the dimples had disappeared, and his eyes - his eyes were big and round. His eyes said everything. They told me that the medication had taken a hard toll and it was, as he said, controlling him.
I had never seen my dad in such a frail state. I wanted to cry, but I held back, forcing myself to be happy to see him. I finally had to leave the room so that I could give myself some time to take all of this in.
I learned from my mom that the results from his ultrasound and CT scans came back with little positive results. The Tegafur/Uracil and Thalidomide combination kept the tumor in check, but its size was still quite large. The drugs were also making him dizzy and causing him to throw up. The drugs also made him constipated, so when he didn't go poo, he was reluctant to eat.
The cancer specialist took him off the cancer meds the week of the 15th. He presented a number of alternatives: Sorafenib, Bevacizumab, Capecitabine, Erlotinb (I wonder who comes up with these names), and said that we could research them and decide which one to take. He still prescribed all the other medication for my dad: the pain killer Tramal Retard, Magnesium Oxide, Prometin and Lasix. When I arrived, my dad started to refuse to eat some of these pills, which were for the side effects of the pain killer and cancer drugs.
The next day, my sister called and I asked her to pick up some things for my dad that I hadn't considered bringing: green tea, spaghetti sauce, pasta, granola, a toaster, bagels. My mom warned me that they didn't have a lot of dishes, let alone a towel for me. But being there, I saw that there were many comfort foods for my dad which Taipei didn't have. Or they had, but it just wasn't the same as back in the States.
That day, me and my mom went to the Chunghwa Telecom office to setup DSL internet service at home. On the way back, we stopped at this place called New York Bagels. Wondering if it was any good, we ordered to go a turkey sandwich on an onion bagel and a roast beef sandwich on my dad's favorite: sesame bagel. It turned out to be pretty good, my dad finishing 3/4 of his sandwich.
That afternoon, we went to go see the liver doctor. He said that the cancer specialist did the right thing by taking my dad off the Tegafur/Uracil and Thalidomide treatment. He said that a cancer patient has a window of opportunity to neutralize the tumor before it spreads. Once it spreads, cancer becomes really difficult to treat and creates a lot more problems.
After sharing the list of cancer drugs the specialist had provided as options, he advised us to go by the cancer specialist's recommendation. My dad then asked about using acupuncture to help relieve some of the side effects. The doctor neither said it was a good idea nor disapproved. He just said that since my dad isn't in the experimental trials for the Tegafur-Thalidomide combination, my dad has more control over his treatments. My dad can say, "This is making me feel ill and I would like to switch," and he could.
On the flip side, he now has to pay for these medications, as they aren't covered by Taiwan's health care system, or covered only partially.
That evening, my dad started hiccuping uncontrollably for some reason. We think it's from him cutting off his medication. By this time, he said he didn't even need to take the pain killer and so he refused to take it despite the doctor's orders. We tried several different things to stop the hiccuping, but it didn't really work.
It went away, but it came back at night. Sleeping next to him on the bed, he would wake me up with his incessant hiccups. The next day, the hiccups became more frequent. Holding his breath wouldn't help. Breathing in a brown paper bag wouldn't help. Eating sometimes helped.
You could tell that he was annoyed and was losing sleep over it. Wednesday night, I slept outside on the sofa bed with my mom. But my dad woke me up each time he started hiccuping. I got up each time at 2 a.m., 4 a.m., and 6 a.m., to get him some warm water, which helped.
Needless to say, I was getting cranky because I didn't sleep well those past two nights. On Thursday, my mom was leaving for Shanghai, so she was busy packing and getting ready to go. I made liang mian, with organic wheat noodles. My mom ate, hugged us goodbye and headed off to the airport.
So, of course, my dad and I got in an argument no less than 30 minutes after my mom left. We were arguing over him not eating lunch. He said it was too spicy. I said you didn’t even try it. Then he said he wanted to cry because his whole mouth burned.
I told him that he was making excuses not to eat, and that if he wants to prepare himself for the next round of chemo, he better gain some weight back. He said that he wasn’t making excuses, adding that my mom had told me to come and he didn’t ask me to come. Then he told me to get out of the room.
You know how a child tests you to see if they can get away with something? I felt the same way here. I felt that since my mom left, he feels he can do whatever he wants. She was controlling his diet, and he probably felt like he was being held hostage because she wouldn’t let him eat pizza or a hamburger or anything he knows he's not supposed to eat.
That afternoon, we went to the cancer specialist. I was pretty mad still, then annoyed because my dad started hiccuping on the busride over to the hospital. As if my life couldn't get any more unpredictable, there was this mentally ill woman who sat in front of me and was having elaborate conversations with herself.
But when we met with the doctor, I tried to focus on the tasks at hand. We talked about his diet and how he's been doing this past week without his cancer medication. We then went over the meds that he had suggested last time and the costs of each.
Finally, the cancer specialist suggested my dad take Capecitabine and wrote a prescription out. My dad was still hiccuping and the doctor wrote a prescription for that too.
When we got back from the hospital, my dad wanted to eat. I pointed out that it was 5 p.m. and asked if this was dinner for him. He said no, and I got irritated because he was going to throw off his entire eating schedule.
So he ate mi fen at this place around the corner. We went back home and I passed out until about 9 p.m. I accompanied my dad to get something to eat, but I was still pretty wiped out and not hungry at all. This was, after all, the first day without my mom.
I arrived Monday at 6 a.m. and took the bus to the Sun Yat-Sen Memorial. From there, I took a short taxi ride to Wu Xing Road, where my parents are renting an apartment. From the pictures, you can tell that it's not that big, but a pretty decent size for two people.
I walked in and saw my dad sitting at the desk in the bedroom. I went to hug him, but to be honest, I was really shocked. When I got closer, I saw that he had lost so much weight. I couldn't even recognize him - he looked like he just got out of a concentration camp.
He was skin and bones: his jaw and chin was smaller, the dimples had disappeared, and his eyes - his eyes were big and round. His eyes said everything. They told me that the medication had taken a hard toll and it was, as he said, controlling him.
I had never seen my dad in such a frail state. I wanted to cry, but I held back, forcing myself to be happy to see him. I finally had to leave the room so that I could give myself some time to take all of this in.
I learned from my mom that the results from his ultrasound and CT scans came back with little positive results. The Tegafur/Uracil and Thalidomide combination kept the tumor in check, but its size was still quite large. The drugs were also making him dizzy and causing him to throw up. The drugs also made him constipated, so when he didn't go poo, he was reluctant to eat.
The cancer specialist took him off the cancer meds the week of the 15th. He presented a number of alternatives: Sorafenib, Bevacizumab, Capecitabine, Erlotinb (I wonder who comes up with these names), and said that we could research them and decide which one to take. He still prescribed all the other medication for my dad: the pain killer Tramal Retard, Magnesium Oxide, Prometin and Lasix. When I arrived, my dad started to refuse to eat some of these pills, which were for the side effects of the pain killer and cancer drugs.
The next day, my sister called and I asked her to pick up some things for my dad that I hadn't considered bringing: green tea, spaghetti sauce, pasta, granola, a toaster, bagels. My mom warned me that they didn't have a lot of dishes, let alone a towel for me. But being there, I saw that there were many comfort foods for my dad which Taipei didn't have. Or they had, but it just wasn't the same as back in the States.
That day, me and my mom went to the Chunghwa Telecom office to setup DSL internet service at home. On the way back, we stopped at this place called New York Bagels. Wondering if it was any good, we ordered to go a turkey sandwich on an onion bagel and a roast beef sandwich on my dad's favorite: sesame bagel. It turned out to be pretty good, my dad finishing 3/4 of his sandwich.
That afternoon, we went to go see the liver doctor. He said that the cancer specialist did the right thing by taking my dad off the Tegafur/Uracil and Thalidomide treatment. He said that a cancer patient has a window of opportunity to neutralize the tumor before it spreads. Once it spreads, cancer becomes really difficult to treat and creates a lot more problems.
After sharing the list of cancer drugs the specialist had provided as options, he advised us to go by the cancer specialist's recommendation. My dad then asked about using acupuncture to help relieve some of the side effects. The doctor neither said it was a good idea nor disapproved. He just said that since my dad isn't in the experimental trials for the Tegafur-Thalidomide combination, my dad has more control over his treatments. My dad can say, "This is making me feel ill and I would like to switch," and he could.
On the flip side, he now has to pay for these medications, as they aren't covered by Taiwan's health care system, or covered only partially.
That evening, my dad started hiccuping uncontrollably for some reason. We think it's from him cutting off his medication. By this time, he said he didn't even need to take the pain killer and so he refused to take it despite the doctor's orders. We tried several different things to stop the hiccuping, but it didn't really work.
It went away, but it came back at night. Sleeping next to him on the bed, he would wake me up with his incessant hiccups. The next day, the hiccups became more frequent. Holding his breath wouldn't help. Breathing in a brown paper bag wouldn't help. Eating sometimes helped.
You could tell that he was annoyed and was losing sleep over it. Wednesday night, I slept outside on the sofa bed with my mom. But my dad woke me up each time he started hiccuping. I got up each time at 2 a.m., 4 a.m., and 6 a.m., to get him some warm water, which helped.
Needless to say, I was getting cranky because I didn't sleep well those past two nights. On Thursday, my mom was leaving for Shanghai, so she was busy packing and getting ready to go. I made liang mian, with organic wheat noodles. My mom ate, hugged us goodbye and headed off to the airport.
So, of course, my dad and I got in an argument no less than 30 minutes after my mom left. We were arguing over him not eating lunch. He said it was too spicy. I said you didn’t even try it. Then he said he wanted to cry because his whole mouth burned.
I told him that he was making excuses not to eat, and that if he wants to prepare himself for the next round of chemo, he better gain some weight back. He said that he wasn’t making excuses, adding that my mom had told me to come and he didn’t ask me to come. Then he told me to get out of the room.
You know how a child tests you to see if they can get away with something? I felt the same way here. I felt that since my mom left, he feels he can do whatever he wants. She was controlling his diet, and he probably felt like he was being held hostage because she wouldn’t let him eat pizza or a hamburger or anything he knows he's not supposed to eat.
That afternoon, we went to the cancer specialist. I was pretty mad still, then annoyed because my dad started hiccuping on the busride over to the hospital. As if my life couldn't get any more unpredictable, there was this mentally ill woman who sat in front of me and was having elaborate conversations with herself.
But when we met with the doctor, I tried to focus on the tasks at hand. We talked about his diet and how he's been doing this past week without his cancer medication. We then went over the meds that he had suggested last time and the costs of each.
Finally, the cancer specialist suggested my dad take Capecitabine and wrote a prescription out. My dad was still hiccuping and the doctor wrote a prescription for that too.
When we got back from the hospital, my dad wanted to eat. I pointed out that it was 5 p.m. and asked if this was dinner for him. He said no, and I got irritated because he was going to throw off his entire eating schedule.
So he ate mi fen at this place around the corner. We went back home and I passed out until about 9 p.m. I accompanied my dad to get something to eat, but I was still pretty wiped out and not hungry at all. This was, after all, the first day without my mom.
Sunday, March 11, 2007
Laundry List
I talked to my dad on Friday night. He and my mom sound like they are in better spirits. I told them that I would be leaving in a week to go see them. Of course, they gave me a laundry list of stuff to bring.
My mom asked for a water filter that attaches to the kitchen faucet. My dad wants me to get him an electric toothbrush for himself and a couple of boxes of chocolate for the doctors and nurses that have been helping him. He said he doesn't want any more clothes since last time I brought him stuff, all of the shirts didn't fit because he lost so much weight.
On Friday, he had a blood test and an ultrasound, but he has to wait until this week to get the results. Will report more when I found out more.
Now I have to go shopping.
My mom asked for a water filter that attaches to the kitchen faucet. My dad wants me to get him an electric toothbrush for himself and a couple of boxes of chocolate for the doctors and nurses that have been helping him. He said he doesn't want any more clothes since last time I brought him stuff, all of the shirts didn't fit because he lost so much weight.
On Friday, he had a blood test and an ultrasound, but he has to wait until this week to get the results. Will report more when I found out more.
Now I have to go shopping.
Sunday, March 4, 2007
Chinese New Year Blowout
I know it's been a long time since I have written. Things have gotten busy with work, and frankly I haven't been in the mood to write.
I called my parents about 2 weeks ago for Chinese New Year's and my mom basically yelled at me for 10 minutes. I don't know if it's because she's mad or because here hearing isn't so good. Probably both.
Then my dad reiterated what she said. It seems that they are concerned about people visiting them. Since my dad is sick, it's not like he can entertain them, take them out or talk to them for a long time. He's just not in good enough shape to do this. And then my mom doesn't want to have to be put in the position of having to cook and entertain any guests.
From what I can tell, they are both under a lot of stress. The job of preparing meals for my dad has been challenging for my mom. While they were in Shanghai, she didn't cook very often because it was just two people, and they had an ayi who is a great cook.
My parents even told me that I shouldn't come. "You can't cook. You'll be no help," my mom said.
Well, I can cook ... I've just never had to prepare 3 meals a day for someone else.
My mom also got the latest blood test results from the doctor. A lot of it she can't understand and I'm having trouble translating the medical terms from Chinese to English. But basically, once he started the chemotherapy, it's had a positive effect:
From what I researched, GOT and GPT are both transaminases, or enzymes that enter the blood in large quantities only when the cells that make and house them become destroyed. High levels of GOT and GPT mean that liver cells are damaged. ALP is an enzyme found in all cells, but particularly in high concentrations in liver cells and can indicate whether a person's liver is damaged.
As you can see, the decrease in these enzymes, as well as his white blood cell count, is a good sign. However, the numbers, I believe are still higher than normal.
My father says that since I left, he's thrown up his food at least once a week. However, ever since he's been taking the new drugs - Prometin and Farlutal - he's gotten his appetite back.
I don't know if that's a good thing. The day I called, my dad wanted to eat egg rolls. My mom said no. Then he wanted to eat pizza. She wouldn't get it for him. Then he got mad.
"This medicine makes me feel this way," he said. "Sometimes my temper's not good. Sometimes I can't control my temper."
Well, speaking from experience, I can't say that his temper was ever very good.
For the past week, it's been difficult getting in touch with my parents. They either weren't picking up my dad's cell phone or it was turned off. Then on Thursday night, my sister called me and said that my mom called her with a new phone number. Apparently they got in a fight and the cell phone ... well, let's just say it explains why we couldn't get through to them.
I called my parents on Friday night and my mom seemed stressed out, tired, sad. She didn't say much about the cell phone or the fight. Neither did my dad.
He sounded tired and he kept talking about how the medication "controls you."
"You are so tired. It's not that you're really tired. It's the medicine that makes you tired," he said.
My mom reported that my dad's been gaining weight because of the new meds, and told the doctor that he wants to stop taking the Farlutal.
This Friday, he's going to be getting an ultrasound and another blood test. The ultrasound will show if there's been some real progress in reducing the size of the tumor in his liver. My dad says that if the progress isn't significant, they may switch chemotherapy drugs.
Keep your fingers crossed. As for me, I might be heading to Taipei in a few weeks to help relieve my mom. Well, I dunno - she doesn't want me to go, she wants me to go, ...
I called my parents about 2 weeks ago for Chinese New Year's and my mom basically yelled at me for 10 minutes. I don't know if it's because she's mad or because here hearing isn't so good. Probably both.
Then my dad reiterated what she said. It seems that they are concerned about people visiting them. Since my dad is sick, it's not like he can entertain them, take them out or talk to them for a long time. He's just not in good enough shape to do this. And then my mom doesn't want to have to be put in the position of having to cook and entertain any guests.
From what I can tell, they are both under a lot of stress. The job of preparing meals for my dad has been challenging for my mom. While they were in Shanghai, she didn't cook very often because it was just two people, and they had an ayi who is a great cook.
My parents even told me that I shouldn't come. "You can't cook. You'll be no help," my mom said.
Well, I can cook ... I've just never had to prepare 3 meals a day for someone else.
My mom also got the latest blood test results from the doctor. A lot of it she can't understand and I'm having trouble translating the medical terms from Chinese to English. But basically, once he started the chemotherapy, it's had a positive effect:
| 11/1/07 | 31/1/07 | 14/2/07 | ||||||||||||||||
Glutamic-Oxaloacetic Transaminase (GOT) | 95 | 42 | 36 | |||||||||||||||
Glutamic-Pyruvic Transaminase (GPT) | 124 | 35 | 31 | |||||||||||||||
Alkaline Phosphatase (ALP) | 655 | 370 | 276 | |||||||||||||||
White Blood Cells | 16,200 | 6,700 | 6,800 | |||||||||||||||
Red Blood Cells | 10.7 | 11.7 | 10.4 |
From what I researched, GOT and GPT are both transaminases, or enzymes that enter the blood in large quantities only when the cells that make and house them become destroyed. High levels of GOT and GPT mean that liver cells are damaged. ALP is an enzyme found in all cells, but particularly in high concentrations in liver cells and can indicate whether a person's liver is damaged.
As you can see, the decrease in these enzymes, as well as his white blood cell count, is a good sign. However, the numbers, I believe are still higher than normal.
My father says that since I left, he's thrown up his food at least once a week. However, ever since he's been taking the new drugs - Prometin and Farlutal - he's gotten his appetite back.
I don't know if that's a good thing. The day I called, my dad wanted to eat egg rolls. My mom said no. Then he wanted to eat pizza. She wouldn't get it for him. Then he got mad.
"This medicine makes me feel this way," he said. "Sometimes my temper's not good. Sometimes I can't control my temper."
Well, speaking from experience, I can't say that his temper was ever very good.
For the past week, it's been difficult getting in touch with my parents. They either weren't picking up my dad's cell phone or it was turned off. Then on Thursday night, my sister called me and said that my mom called her with a new phone number. Apparently they got in a fight and the cell phone ... well, let's just say it explains why we couldn't get through to them.
I called my parents on Friday night and my mom seemed stressed out, tired, sad. She didn't say much about the cell phone or the fight. Neither did my dad.
He sounded tired and he kept talking about how the medication "controls you."
"You are so tired. It's not that you're really tired. It's the medicine that makes you tired," he said.
My mom reported that my dad's been gaining weight because of the new meds, and told the doctor that he wants to stop taking the Farlutal.
This Friday, he's going to be getting an ultrasound and another blood test. The ultrasound will show if there's been some real progress in reducing the size of the tumor in his liver. My dad says that if the progress isn't significant, they may switch chemotherapy drugs.
Keep your fingers crossed. As for me, I might be heading to Taipei in a few weeks to help relieve my mom. Well, I dunno - she doesn't want me to go, she wants me to go, ...
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