By Shirley Chang
Just to be clear, I’m not claiming to be a sushi aficionado or anything remotely close to that. I just happen to love eating sushi. But I can probably very safely say that not many people have the same sushi experience that I had: it got me through the darkest days of my life.
I had my first encounter with sushi when I was studying as a foreign student at an upstate New York college. During one of the spring breaks, my classmate took me to a Japanese restaurant in New York City. That’s when I fell in love with sushi. After graduation, I returned to Hong Kong for work, got married, and followed my husband’s work to Arizona. My parents moved to Vancouver, Canada, in the late 80s, after the British government announced that it would return the colony back to China in 1997. After my dad passed away, Mom stayed in Vancouver, while my husband and I continued working in Phoenix. With my limited vacation days and life happenings, we were able to visit her two or three times a year. When my daughter was about three, my husband and I planned a visit to see mom in the spring. It was a wonderful time of the year to visit Vancouver, with beautiful weather and flowers blooming everywhere.
During that trip, I found out that Mom had finally seen a doctor for a cough that she had for a couple of months. Given that she was normally very healthy, I was concerned that it might be something serious like pneumonia or some variation of it. After she told me about the appointment, I felt compelled (and pretty sure it was divine intervention as well) to stay beyond my vacation in order to accompany her to her doctor’s visit.
On the day of the appointment, I met her doctor, a pulmonologist, who greeted us in Cantonese. I wasn’t too surprised by that, as there was a sizable Hong Kong community in Vancouver. The doctor told my mom in Cantonese: “Mrs. Chang, I am very sorry that your X-rays and CT scan confirmed that you have lung cancer.”
Mom and I were both in shock. But Mom recovered quickly and asked her about the staging. The doctor told her very vaguely: “Well, it’s somewhere in the middle.” She turned to me and switched to English: “Your mom’s cancer is late stage, stage IV. Due to the urgency, I made an appointment for her with an oncologist for tomorrow.” I was in shock one more time. My mom didn’t speak English, so she didn’t know what the doctor had just said.
“Doctor, aren’t you going to tell Mom the whole truth?” I asked her in English.
“Well, that’s your decision.” In my very personal opinion, this doctor was more “Chinese” than I thought. At that moment, I was not liking my native culture very much.
A thousand thoughts raced through my mind. Thankfully, I was able to shut them off and persevered until Mom’s oncology appointment the next day. The oncologist, who couldn’t speak Cantonese (which I was actually grateful for), spoke to me and asked me to tell Mom that her cancer had spread to other parts of her body and surgery would not help. All they could do was to make her feel more comfortable with radiation treatment, and then, palliative care.
I explained to Mom later with a short summary: no surgery, and radiation would start in two weeks. Mom remained optimistic: “I survived eight surgeries in my life and lived more than forty years with only one kidney. I will beat this thing.”
I didn’t have the courage to tell her. What should I do?
Again, thankfully, because I suddenly had this huge responsibility of taking care of a cancer patient, I quickly set aside my emotions and brought her home. I immediately called my husband to tell him about the oncologist’s report and discussed logistics. If my boss did not want me to quit right away and leave the ongoing projects dangling, I would have to request that he let me work from “home” with reduced hours so I could take Mom to her radiation sessions and take care of her. I would quit when he found my replacement. In the meantime, I would bring our daughter to cheer Mom up. And my mother-in-law, who was recently widowed, would travel from Hong Kong to help me take care of the cooking and watching over our daughter when I had to take Mom to her appointments or when I had work meetings. That seemed to be a good plan. Relying on family and friends, I eventually learned, was a really good plan, and not something to be ashamed of despite my initial misperception. When in doubt, ask for help; that was one of the many things I learned from my caregiving journey.
As Mom rested, I went to the pharmacy to fill her prescriptions and got a few things I needed: a planner to write down all of her appointments, some stationary, and some medical supplies that she might need in the future.
When I was done shopping, I started walking back to her apartment in downtown. It was only a short fifteen-minute walk from the pharmacy. The main street the pharmacy was on is a bit of a tourist attraction. There were tons of restaurants, with signs on the sidewalk, luring tourists in. I caught sight of a sushi restaurant on the second floor of a building; I checked out their menu and gasped — what a bargain!
Of course, silly me. Living in the middle of a landlocked state meant that seafood prices were very high in Phoenix. As much as I love sushi, we only very seldom had this special treat, usually on my birthday. Before my daughter was born, we used to make “food runs” to Los Angeles to get quality and reasonably priced seafood. But this is Vancouver, BC. Fresh seafood is in abundance, and there are many seafood restaurants competing for customers so the prices are equally competitive.
I immediately walked up the stairs into this sushi restaurant and ordered the happy hour sushi set. I had never done this before, having sushi by myself. But today, I really needed it. Yes, I didn’t just want it, I needed it. It wasn’t just about how inexpensive the set was, or how much I loved sushi. It wasn’t about that at all. I didn’t have a name for it, but I knew I needed something else to lift me up besides my friends’ prayers.
As I sat there watching the sushi chef slice the salmon with great precision and skill, I couldn’t help but feel I was the one on the cutting board. My beloved mom was dying, and besides making her feel comfortable, there was nothing I could do. I felt like falling to pieces, or slices, like the fish in front of the chef. I felt so helpless, so angry, and so sad.
As the waitress politely laid down the plate in front of me, my tears started rolling down. I was glad nobody saw me as I was hiding in a booth, away from the crowd. Six salmon nigiri sushi were artfully placed on the rectangular plate, next to some ginger and wasabi that were equally aesthetically pleasing. I picked up one of the pieces, dipped it into the soy sauce carefully, and delivered it to my mouth. The piece of salmon melted in my mouth immediately, releasing delicate flavors over the fragrant rice that’s cooked to perfection. This was easily the freshest and best tasting sushi I have ever had in North America.
But this was not just delicious sushi. This was helpless, angry, sad sushi.
A few days later, I made it back home to Phoenix, packed some stuff, and brought my daughter back to Vancouver. My husband drove my car with his friend to Vancouver so I could have transportation for my mom. Then my mother-in-law arrived.
For the next two months, there were a lot of things happening: doctor’s appointments, CT scans to keep tab of Mom’s progress, the two-week radiation that wiped Mom out, dietician visits, nurse visits, more doctor visits, and homecare visits. I was busy keeping my daughter entertained, persuading mom to take her meds, and buying fresh groceries from Chinatown market in order to help my mother-in-law cook dishes that were appetizing to Mom. I usually succeeded in accomplishing one of the three tasks, never more than two, and sometimes none.
There were weekly visits to the pharmacy as well. I had to pick up pain meds, stool softeners to help with the pain meds, then more meds to help with the other meds. I always timed the visits such that they occurred during the early afternoon, when lunch was finished, dishes were washed, and everyone else (my mom, my mother-in-law, and my daughter) were taking a nap. I would make a quick trip to the restaurant alone to have some sushi. Sometimes, it would be exhaustion sushi, especially on the days I lifted the wheel chair in and out of the car trunk multiple times when taking my mom to her appointments. Other times, it was nutrition sushi, when I could hardly eat anything else, but knew I had to eat something in order to be an effective caregiver. And then there were the days of sad sushi, when I saw how much pain Mom was in. Or if she refused to take her pain meds, I would have some helpless sushi.
I got to know the pharmacist pretty well. As he filled the prescriptions with heavier and heavier doses, he looked at me with sympathy. He must have seen this many times before. As expected, Mom’s condition worsened. She was withering away right before my eyes. She tried hard to fight, but her body wouldn’t cooperate. My years of Western schooling told me the right thing to do was to tell her the truth, as she deserved to know. My years of Chinese upbringing told me I should hide it from her, for her own good. What should I do?
After days of suffering in pain due to her refusal to take pain meds, I had to call my mom’s geriatrician and he came for a visit in her bedroom as she could no longer walk. He might have seen the situation before because he took me aside and asked me:
“I notice your mom doesn’t speak English; how well does she know about her situation?”
I couldn’t look him in the eye. He pressed on: “How well does she know? Tell me the truth.”
I broke down, “She didn’t know it was late stage.”
He looked me in the eye and demanded: “You have to tell her.”
I knew it was the right thing to do, so I told her. I could see the light in her eyes fade away instantly. Mom sighed and said nothing. The doctor told me: “If she still refuses to take meds, call me again.”
Mom told us to leave her room so she could rest. My mother-in-law saw the whole thing, and asked my daughter to go play with her in her room.
“Mama, I’m going to go get something from the pharmacy.” I told my mother-in-law.
That afternoon, I had two pieces of heartbroken sushi.
As expected, Mom refused to take meds again. I called the geriatrician and he sent the ambulance. My mom didn’t want to go to the hospital, but she was completely bedridden and in excruciating pain. At the hospital, she received pain medication through IV and was able to rest. I was by her side night and day and my husband flew in from Phoenix to take care of our daughter. I promised mom I would take her home after the weekend, as the doctors said I could after her condition stabilized. She was happy about that.
She passed away peacefully on Sunday night, surrounded by family: my husband, our daughter, my mother-in-law and me.
The next day, I slept all morning and afternoon. In the evening, my husband dragged me out of bed and said we should grab dinner; I said I didn’t want anything. He pleaded with me: “You have to eat! Look, you’re exhausted, you’ve lost so much weight. Please, do it for our daughter.” I relented.
That night I had sushi. Now I know its proper name. It was self-care sushi. And it got me through the darkest days of my life, as a caregiver to Mom. I did it without knowing it. I survived caregiving, with the help of the best self-care sushi in North America.