Deja Vu

Jeff here again. I called my sister when she got back from Taipei and asked her what happened these past few days. I was busy with work and didn't get a chance to call. It also took me a while to finish writing about my trip. The idea was to have my sister write while she was there, but I delayed that. When I did give her the username and password for this blog, she couldn't login for some reason. And by the time I figured that Blogger has a new and an old login page, and she had logged in the other one, she was on her way back to San Francisco.

In any case, she told me about my dad's swelling and how my mom was going to take my dad to the hospital after she dropped my sister off. But she had just talked to my mom and they ended up not going because my dad was too tired. This was Saturday here in the States.

I called my mom and she said basically the same thing as what my sister told me, that my dad was too tired. But today, she was going to take him. I talked to her again Saturday night (Sunday afternoon over there), and she told me that she still hadn't taken him.

Apparently, my dad woke up and went to the bathroom and took a shower. After showering, he was too tired and went to his bedroom to take a nap. He got up to eat lunch, but afterwards, he was again too tired to go to the hospital and went to sleep.

Frustrated, my mom told me that she couldn't sleep very well the previous night because she was constantly worried about my dad. His swelling was bad in his feet and his stomach. She said he could walk, but not that far. On top of that, he was eating less and less, and was a little constipated too.

My concern was what if the swelling got so bad that he couldn't get himself up? How would she get him out of bed?

My mom agreed. She told me that she thinks my dad doesn't want to go to the emergency room because of his first experience there. It was New Year's Day, he had just arrived from Shanghai and he had a very high fever. My mom took him immediately to the hospital emergency room. He stuck in the hallway for days, with constant noise and no privacy. On top of that, my dad's fever raised an alarm with Taiwan's Center for Disease Control. They thought that my dad went to China and came back with Avian Flu.

I asked my mom to let me talk to my dad. She woke him up and he sounded really weak, despite it being 4 p.m. in the afternoon their time. I asked him why he hasn't gone to the hospital yet. He said somewhat incomprehensibly that he had a checkup on Tuesday.

I assumed that he meant that he was willing to wait it out. So I told him: "Pa, you are in serious condition. The swelling is making you so uncomfortable, you can't eat. If you don't go to the hospital, you are just going to get worse.

"Remember when you told me you didn't want mom to suffer? Well, if you don't go to the hospital, you are making her suffer. So please go to the hospital, you will feel a lot better after they drain all the fluid. It won't take that long."

My dad only responded with an occasional "Ehhh."

I got back on the phone with my mom and we talked about getting him to the hospital. I asked her what would she do if my dad could not physically get to the hospital. I suggested calling an ambulance or calling on my cousin.

She said there was another downside of going to the hospital now - it was a holiday weekend. It was almost deja vu, because the dreaded emergency room episode also took place during the New Year's holiday, and half the hospital staff was out. This weekend, it was Tomb-Sweeping weekend, and most definitely, hospital workers would be out paying respects to the dead.

I told my mom that we're sorry we couldn't be there to help and that I hope she stays strong. She responded, "O.K.-la, bye."

The next day, I called the apartment but no one was there. Part of me was relieved that they had finally gone to the hospital. I called my dad's cell phone twice and he answered the second time. I could tell that he was in a hospital, there were voices in the background.

I asked him where he was. He said he was in the hospital emergency room. I told him I was glad he was there.

"Glad ni de pi! I am so tired, but I can't sleep because it's too noisy. I haven't slept for two days."

I asked him why he was there so long, how come they haven't taken the fluids out. He said that they tried to, but when they were taking it out of his belly, they saw a little bit of blood and so they stopped. The doctors think the blood might be coming from his liver, so they have to run some more tests.

He was pretty miserable and pissed off. But I told him, "Dad, I know that you are not happy right now and you're not comfortable, but I'm really glad that you are in the hospital."

He said, "Ehhh ... O.K., I'm tired. Bye."

Laura's Visit: Day Two

My dad got up at 7:30 and that's when everyone started to move around. I made breakfast (eggs and toasted bagels). Mom made coffee for the both of us.

Dad announced that he needed to have a bigger lunch and a smaller dinner. He had felt bloated from the dinner we made last night. (Penne pasta with tomato sauce and onion bagels, toasted, dipped in olive oil, and a soup that mom made.) And even though he was able to fall asleep, when he woke up, the bloated feeling was still there and kept him awake. By making lunch bigger and dinner smaller, he would be able to sleep through the night without feeling hungry or uncomfortable. We all agreed that this was a very wise decision on his part and we would make the adjustments according to his needs.

After breakfast dad fell back asleep. It's during this nap that my mom and I went out to do a little shopping. We had to buy milk. That's about all we could think of. Dad wanted to eat out for lunch, which the both of us didn't want to do, but he'd be upset if we didn't go along with this idea.

After the morning nap, we went to the accupuncturist's office and then went out for lunch. Dad had yu tou soup on his mind. The same soup Jeff and the Aunties had during their visit. Yes, the same one that could've fed ten people. I think he had such a good time with my brother and the Aunties at that meal, that he wanted to relive it with me and my mom. No such luck. Instead, we found a nice restaurant that served a medicinal chicken soup.

The restaurant wasn't bad. Everything we ordered was light and tasted pretty good. I think the most important thing was that my mom was around and she has a pretty big say on what gets ordered.

When we were done, we sat around to digest for a little while. During this time I noticed my dad staring at every dish the waitress was carrying to the next table, mouth open, eyes looking hungry. My mom made a comment about how scary he looked. Then we all laughed because we all knew that he really was hungry inside and couldn't help but feel envious of all the dishes the next table was able to eat. We packed up the soup and went home. Dinner was going to involve the leftover soup.

Dad's pretty upset about his weight-loss. He kept bringing it up and I kept trying to make light of it. I reminded him that since he was in his forties, he's been trying to lose weight. Now he doesn't have to worry about it anymore. All he could do was chuckle out of courtesy. He said ..."not like this". And he's right, because he's not only lost excess weight, but all the muscle in this arms and legs. He has little to no energy and when he does anything, it makes him completely exhausted. So he sleeps. And when he sleeps, he becomes inactive, which is probably why he's lost all the muscle in his body.

Dad's constantly comparing himself now with himself a couple of months ago. "I used to be able to walk a lot, now i can't"... but that's because he was on a medication that wasn't having much effect on his cancer. So, now the medication seems to be working, but he can't seem to stop feeling fatigued.

After dinner, I gave him a light back rub. The guy at the acupuncturist office showed me where he needed a massage to help his shoulder. After about five minutes my dad was out of breath saying that he felt like he just worked out.

Laura's Visit: Day One

I arrived in Taipei at 6am, Tuesday. The plan was for me to take the Express bus to Sun Yat Sen Memorial and from there mom picked me up. It was rainy and cold and I was so happy when I saw my mom. We got into a cab and went straight to the apartment.

When we arrived at the apartment, my dad was still sleeping. I had over a week to prepare myself for when I saw my dad's weightloss. I walked in and was a little shocked. I woke him and told him that he looked good. He sat up and flashed me a big smile and said "you too". I knew it was going to be a good day.

I started to unpack the forty pounds of luggage that I brought. Some more organic pasta, a toaster, an answering machine, a digital camera, two small bottles of spices, two pounds of granola cereal, four bottles of Isotonix, a bottle of organic olive oil and half a dozen bagels. My mom was impressed that I was able to pack everything into one suitcase. I told her that I had a great teacher. She laughed because she knows that she's able to pack any amount of clothing into a single suitcase and have it come out without a wrinkle.

I started to make breakfast. Liu family eggs over half a toasted bagel. Everyone was happy and we were just enjoying each other's company. Dad took his medicine and almost instantly fell asleep. He walked off to his bedroom and fell asleep as soon as his bed touched his pillow.
This was when my mom and I went out for some grocery shopping at the market down the street. As tiring as her daily schedule is, I know that there's something fun and interesting everytime she goes to the market. She told me that the clothes here are cheap and everyday there are different vendors. The other day she saw people selling pants for 100 NT. That's about 3 US Dollars. She said she figured she wouldn't get them that day. The next day, they were gone.

We get back and dad's awake and ready to go to the acupuncturist. Dad's arm still hurt and going to the acupuncturist's office gave him some relief. They also wanted to see if I could find some relief for my neck and headaches.

When we arrived at the office dad sat in a chair and they put a heat pack on him while I sat next to him with six needles in my neck and shoulders. After the time was up, I got onto the massage table and this short stalky man started to treat me with tui na. It's like a massage but the person presses a lot harder, so it's not relaxing, and it hurts a lot. Afterwards, dad got on the table and the man starts tui na on him.

It hurt him as well, but he's positive that it's been beneficial. He told me that after his first visit, he urinated a white fluid. I read online that those with cancer often experience swelling. That the lymph nodes were being blocked which release a white fluid. I thought that maybe the tui na was massaging the lymph glands and helping the release of the fluids. Of course, it only happened that one time.

When we were done with the treatment, dad was ready to go out for lunch. Mom and I objected because we had already planned the lunch and dinner. We got home and cooked lunch and when we were done, we all sat around and watched a little tv.

Dad dozed off and once he was asleep, mom and I were off shopping again. We didn't need much, but I think the time shopping is a chance for my mom to get out and moving.

We made dinner early because I was already starting to crash. I made some penne pasta with marinara sauce. I added some red chili peppers. Dad was looking forward to the chili peppers because he loves adding it to his spagetti. However, this time, it was too spicy for him and he couldn't finish his pasta. Dad was stuffed, took his medication and got ready for bed.
Dad told me that he's hungry all the time, but he can't eat much because he feels bloated. And when he feels bloated, he gets really uncomfortable and cranky. It was good news to hear that he had an apetite, but unfortunate to hear that he can't satisfy his hunger.

We all started to watch The Sixth Sense and I passed out. I woke up in the middle of the night and heard my dad moving around. I went into his room to keep him company. He was feeling bloated. I tried to hang out with him. He just told me to go back and keep my mom company.
And that was Day One.

Doctor Revisited

On Thursday, we had a doctor's appointment in the afternoon. My dad wasn't as excited about the check-up as he was about my mom coming back. He prepared by making sure he got a lot of rest, because at night he wanted us to all go out and eat.

The question of the day was where to eat dinner. He wanted Capone's, but he was worried my mom wouldn't want to eat Western food. So as a backup, we picked out Kao Chi, the Shanghainese restaurant we went to last time I was here - no, not Taipei 101 again.

After eating lunch, we started getting ready. At 3:30 p.m., we left for Tai Da. We got to the Oncology ward just in time. We hadn't waited for more than 2 minutes when the nurse called our number.

My dad began by explaining that he was doing fine, his appetite was back and physically he was feeling better. He also told the liver cancer specialist that he had kicked off all the other meds. The doctor was shocked. He was like, "Everything? Even the pain killers?"

I said, "No, not exactly. He took it on two occasions - once when he went poo 8 times a day (as I figured its side effects would counteract this) and the second time when he couldn't sleep. Both times it worked."

The doctor looked a little confused. He didn't think it would counteract the pooing, but he went back to my dad and asked him if he was feeling any pain. My dad said no.

At that point, the doctor did a physical check up on my dad's abdomen. My dad went on to explain that for the first time, he had sneezed loudly and it didn't bother him. For the past two months, he couldn't take deep breaths because his lungs would press up against the tumor and cause pain. But now, he was sneezing, yawning, even sleeping on his side, which he couldn't do before.

You should have seen the look on the doctor's face. He looked at me and I concurred. The doctor was in disbelief. He said he never seen anyone cut off that much medication at once. He also said the tumor felt smaller and that my dad's body was taking to the Capecitabine quite well.

I could tell that he was still in shock, though. He asked us, "So you don't need any more pain killers, stool softener, constipation pills, hiccup pills, appetite meds?" My dad said no, we still have a lot left.

He wrote out a prescription for a two week supply of Capecitabine and told us that he would give us the number to contact the distributor directly for future doses of the chemo drug. I guess they don't have enough to distribute or something.

I then asked my dad to explain his sleepnessness and the dreams he's been having. The doctor suggested prescribing sleeping pills. At first my dad said no, but after I suggested that he should at least have some on hand just in case, my dad agreed. The doctor prescribed some light sleeping pills so my dad shouldn't be too worried.

Outside the doctor's office, my dad asked excitedly, "Did you see the doctor's expression when I told him I wasn't taking any other medication? His eyes got so big." My dad then wanted me to count how many seconds it would take for him to take a deep breath. I counted 8 seconds. He then walked over to the weight scale and measured himself. He said he had gained 2.5 kilos from the week before, when we last came to see the doctor.

My dad said, "You see, before I could only take small breaths. I couldn't even yawn really because it would hurt."

After getting the prescriptions, I went to go pay. The bill came out to be NT$11,000, which we didn't have in cash, so I had to run downstairs to the ATM and make a withdrawal. The majority of the bill was for a 2-week supply of Capecitabine. The stuff isn't cheap, I tell ya.

Walking down the hallway of the hospital, I looked over at my dad. He looked pensive, deep in thought, not like he was 10 minutes ago.

I asked him what was wrong. He said, bursting into tears, "I'm just so happy."

I told him that the results were really positive and the fact that he got his appetite back is a huge plus. We were all really happy for him.

Then he said, "These past few months have been a complete waste of time. I should yell at the doctor for putting me on that medication."

I tried to be positive, telling him that the Tegafur/Uracil and Thalidomide didn't shrink the size of the tumor that much, but it didn't allow the tumor to grow either. That was important because the cancer could have spread to other parts of the body and been even more difficult to stop. The difference between that and taking nothing would have surely been death.

But inside, I understood how frustrated my dad must have been. All that suffering, all that weight loss, the pain.

We had to rush back home because my mom was on her way back from the airport. My dad choked on some grape juice and said that he had to calm down from being too excited that mom was back soon. When we got back, I picked up a card for him at the bookstore. He wrote my mom a nice little note and we placed it on the living room table.

My mom arrived loud and proud. She walked in the door and went into the bedroom to hug my dad. My dad immediately started tearing. It was too much for him.

My mom didn't really know how to respond, I think. She was just like, "Ah-yo, what's the matter? Look, I brought you the clothes you wanted! And here's some cookies!"

It was funny, like she was trying to cheer up a child.

After my mom unpacked her luggage, we all went out to eat at Capone's. When we got seated, my dad was like, "We'll order a smaller pizza this time as an appetizer and split a soup and salad. Then we can each order a pasta or steak."

Well, no one ordered a steak, and we only ordered one pasta dish. My dad's eyes were bigger than his stomach. With the pizza, soup and salad, we had enough to feed all three of us, and still have leftovers.

The next day, my dad woke up tired and his right shoulder aching. He had slept on his side, and since he had lost all of his muscle tissue, his right shoulder was in pain. The Salonpas I got him didn't work. I told him he could have taken a Tramal Retard. It's a pain killer, that's what it's for. He said he was worried about being constipated from the medicine, but took one after breakfast.

My dad spent most of the day sleeping. I packed my stuff and taught my mom on how to make the Isotonix drink (which the liver cancer specialist said would do more good than harm) and dispense his medication. I told her not to worry, as my sister was coming to visit on Tuesday.

It was a tiring 10 days. And when I got back to Los Angeles, I slept for 12 hours ... straight.

Emotions Run High: Part II

Maybe it was the nagging or the bossing around. Maybe it was the talking in hushed tones, constant fussing over my dad, or the various advice on what to eat/not to eat.

Or it could of been just lack of sleep from my dad waking up hungry in the middle of the night again. Whatever it was, by Tuesday, I needed a break. I told my dad that I might have to go out. My mom had gone, yet I felt I had gained two mothers in the meantime. My dad laughed.

My aunts complimented me at lunch for doing such a great job cleaning and washing. But it wasn't much comfort. I was starting to get snappy. That afternoon, when my dad went to sleep, I went to a nearby cafe to work on the blog. When I got back, my aunts were sleeping on the couch.

For dinner, my first aunt prepared bai cai xi-fen again, per my father's request, while me and my second aunt went to go get some bentos from this restaurant around the corner. We selected a lot of vegetable and tofu dishes. I also picked up two grilled chicken thigh pieces from a Thai restaurant.

My dad really enjoyed the meal. We had all kinds of stuff, like a mini-feast. My aunts made fun of me, because I only got one boiled egg (for my dad). They said that my dad could eat it and everyone else could "liou kou sui."

But as we were all eating, he started crying unexpectedly. This totally freaked my aunts out. They were like, "What's wrong? What's going on?"

My dad didn't say anything, he just asked them to leave him be for a second. A little later, they talked about coming back the next day. It was their last day, as they were flying out at night. My dad said it wasn't necessary. They should go out to shop. My first aunt was itching to go out on the town, I could tell. My second aunt said she hadn't been back to Taipei for 15 years, but she just wanted to spend time with my dad.

I walked them out, and I asked them what time they were going to come over tomorrow. I figured that it was their last day, and if they wanted to, they should spend as much time as possible with my dad.

As I cleaned up, I told my dad that he should rest as much as he could because we should really take my aunts out to lunch. "It's their last day here," I said. He agreed.

We sat around talking about how he was feeling, Medicare, anti-oxidants, his sisters, growing up, being emotional these last few days. I asked him what made him cry today during dinner.

He said he started missing my mom again.

The next morning, I found out that my dad couldn't really sleep. One of the side effects of the Capecitabine is sleeplessness. Even if he wanted to sleep, he couldn't. He would doze off, but wake up suddenly.

He told me that he kept having this recurring dream of him playing cards with another person whose family name was also Liu. It was these intense card games, and each time he would beat the other person. Each time he won, he would wake up, sweating profusely.

"I don't know what would have happened if I had lost," he said.

I said that maybe the dream was a metaphor: the other person he was playing against was really the cancer within him, and he was mentally trying to win his life back.

At around 10 a.m., we heard my name being called from outside. My dad said, "They're back?" I laughed and let my aunts in. They came in all happy, boisterous and loud. After a few minutes with my dad, I told them that they should let my dad rest if they wanted him to be able to go out to lunch.

At 12:30, I woke up my dad. He was tired, I could tell. He wanted us to go out and get take-out food. But he could tell from the expression on my face that we should go out. I wanted him to try and get up, instead of being home all day for the second day in a row. I helped him get into his clothes and he went to the bathroom to freshen up.

Of course, we went to Taipei 101 again. On the way there, the cab driver overheard my aunts talking about some wonder-soup that's supposed to be good for the body. He started talking about what this soup and that soup, I couldn't understand all of it because he was talking in Taiwanese half the time. But he said how he drinks it every day and he's so healthy. My aunt was like, yeah it must be good because I can tell from your LOUD VOICE.

We went to the Shanghainese restaurant and ordered xiao long bao, chicken soup, sauteed green vegetables and some small dishes including bitter melon.

My aunts were laughing, having a good time. At Taipei 101, they had a little time to do some last-minute shopping. My second aunt bought my dad a book about this woman who had cancer and cured herself just by switching to a healthier diet, eating organic vegetables and certain soups.

They left close to 2 p.m. We hugged goodbye. My first aunt said, "Next time we'll stay longer." Ha-ha-ha.

My dad and I hung out in the food court downstairs. He said being outside feels good. The air is better and he can people-watch. I could tell he hasn't been as sensitive to smells and noise as he was with the first round of chemotherapy.

When we got home, we both took a nap. We were both exhausted.

Emotions Run High: Part I

Monday morning, my dad asked me to call my mom to ask her about some business stuff. Our housekeeper answered and said my mom was out at a golf tournament.

Afterwards, I asked my dad if he was jealous that mom was out on a tour and playing golf. He replied, "No, I'm actually very happy for her."

Then he said how my mom doesn't make friends easily and it was hard for her to adjust to life in Shanghai. But now she gets calls from all these people asking her to do stuff.

My aunts came over at around noon, and since my dad was in good spirits, we decided to go out to eat. My second aunt likes nicer, sit-down establishments, so she suggested Taipei 101. We ended up at this Shanghainese restaurant, very close to the end of their lunch hour.

We ordered saguo yu tou soup, cao nian gao, and cai fan. The smallest bowl that the saquo yu tou soup comes in serves 10 people, but we put a pretty good dent in it.

My aunts left to take care of some business, so me and my dad hung out at Taipei 101 for a little while. Lately, my dad needs time to rest when he goes out. He can't just get up and go. He needs an hour or more to just rest his body before moving again.

We went home at around 4:30 p.m., taking the #5 little bus back to Wuxing Rd. I know that my aunts would have preferred us take the taxi, but I want my dad to feel that he can still do some things independently, even if it's with my help.

My dad told me that about a month or so ago, he went out by himself to eat. I'm not sure if he told my mom or what, but he set off on his own. Well, he had a sudden urge to go to the bathroom, and he had to ask the restaurant owner to let him use the bathroom. He was pretty desperate. We're talking small restaurant here, like hole-in-the-wall.

My dad says that he was praying "Om-yi tuo-fuo" the whole time, because he was in so much agony. He didn't even know if he could make it home. When he finally got the energy to leave the bathroom, his clothes were wet from sweating so much. He said he cried when he got home.

Occasionally, my dad will sweat a lot. I read somewhere that the liver helps regulate body temperature. In general, when we're at home, he feels hot even though he doesn't have a fever.

When we got home that day, my dad went to sit on the couch and immediately fell asleep. Within an hour, I heard my name being called outside. It was my aunts again.

I had thought they were gone for the day, but I was wrong. When they got upstairs, they said they went to Taipei 101 to look for us, but we weren't there.

We ate leftover wonton and bai cai xi-fen that evening. After my aunts left, my dad and I sat in the living room talking about his cancer and his meds. He told me to look up the Isotonix drink powder that my second aunt got him on the Internet. My aunt seems to be big on it. She wants my dad to drink 3 times the recommended dosage every day, to "catch up." She takes it regularly and swears by it, saying it makes her skin soft. Isotonix turns out to be high in anti-oxidants, although I looked at the label and it contained quite a bit of fructose sugar.

Sugar, especially refined sugar, I explained, is not good for you. Your body expends a lot of energy and B vitamins to break down sugar, so quite a bit of research says that refined sugar actually depresses the immune system.

I also explained to him the role of anti-oxidants and how some doctors believe that it could work against cancer meds. Firstly, they could repair cancer cells that are damaged on purpose by certain chemotherapy drugs, or block the efficacy of these drugs.

We agreed to take just the regular drink dosage and talk to the liver cancer specialist on Thursday to see what he says.

Somehow, the subject of my mom came up. My dad told me about how he never thought her family would help him out so much. My mom's brother really hooked him up with a reputable liver doctor, who helped get him out of the hectic emergency room and into a real hospital bed.

And then his eyes started to well up with tears. He told me when he was released from the hospital, it was my mom's birthday and he wanted to buy her a birthday cake.

"It's one thing if you don't have money to buy someone something," he said, crying. "You could get a piece of tofu - at least it shows you tried. But you feel so bad if you can't even cross the street to buy someone a cake - if you're not even physically capable of doing just that little thing."