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.
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