The first few nights home from the hospital that last week of June could not have been any better. Everything went smoothly—including the Lovenox shot that I had to give Mom on a nightly basis. Things seemed to be going well thus far: she liked her new soft-spoken oncologist while I couldn’t help but marvel that he was a physician with an Ivy MD and residency, credentials that were far loftier than those of the other doctors at the hospital. The chemo facility seemed spotless and efficient, its staff friendly and knowledgeable. Mom would be in good hands, I thought. But in less than one week, problems emerged, signalling her rapid decline.
For one thing, the Lovenox was making her incontinent. She could barely get to the bathroom in time, so it meant placing a commode in her room. For me, this entailed not only waking up in the middle of the night, but also walking her to the commode before emptying it and washing it out: although in retrospect this was by no means the worst aspect. More disquieting was the fact that her mind was deteriorating as she lost her sense of direction.
One night, as she was going to use her commode, which was just three feet away from her bed, she headed towards the desk instead. “No, Mom, this way.” I was able to get her to the commode just in time by grasping her, but she became enraged. I was already feeling exhausted since I had insomnia—not to mention that I was already nervous about her CAT scan which was to take place a few hours later—so I snapped back angrily. “I’m going downstairs,” she huffed. “No, Mom, you’re not.” I tried to seat her on her bed, but she pushed me aside.
“I’m fed up with you; you’re even nastier than my mother.” I felt a bit relieved when she went to the study next door and slammed the door. I could hear the TV. She’ll probably just watch a program before snoozing I thought. Somehow, I finally fell asleep until the cats came in and woke me up. I shooed them away as I was still drowsy.
Then I heard my mother call from a distant part of the house. She had indeed gone downstairs so I sprinted down as fast as my drowsy legs would carry me. I was surprised to see her at the basement door whereupon she cried that some evil spirit came and pushed her down the stairs and that the cats came to check on her. Even to this day, I don’t know whether she just fell on the landing or tumbled all the way down to the basement. But again, it seemed apparent that the cats were aware that something was wrong—and that they thought it imperative to get me. Never underestimate a cat’s intelligence, I told myself.
We still made it to Mom’s CAT scan on time before forcing her to the ER: Mom did not want to go, telling me she was fine, while I wanted to make sure she had no broken bones. A few hours later, we were told everything was fine and Mom could go home. She was in tears as she apologized to me. “I know I should have listened to you.”
That weekend of the 4th of July would be some of our few blissful days together. I still recall feeling at ease, even pleased, as Mom complimented my burgers that sunny Saturday. All of us ate in my study watching the large TV. Mom even felt sufficiently energetic to go out and sweep the deck. That evening, we joked and laughed, just like old times.
The bliss would not last for long though. Shortly after her first chemotherapy session three days later, she felt extremely fatigued and out of breath. We were not altogether unprepared for it since we had already been cautioned that the first chemo session would be the most difficult—and indeed it was because she could not sleep at all that night, tossing, turning, and picking at her sheets. On the following day, a Wednesday, the visiting nurse came: and even now, I wonder if it was the right decision as he decided that she needed to be sent to ER immediately. Perhaps, knowing that the first session would be difficult, I should not have allowed the visiting nurse to come; it might have been better just to let her sleep. But as it was, her oxygen went down while her blood pressure ramped up, so she was sent to the hospital for another week.
My birthday on the 13th was a melancholy one. How different from last year when I turned 50 and Mom bought me not one, but two cakes—along with three birthday cards featuring cats. And now, here she was, lying in bed, just barely remembering, even if she was conscious enough to be pleased when I told her about another stock profit I had made right in her very hospital room. “You are so good at this…I’m so proud of you.” Would I have another birthday with Mom, I asked myself. Or would this be the last?
I often wonder if Mom’s hospital stay weakened her even more a day later, particularly when my mom’s roommate, a very warm and affable Haitian woman, told me how Mom rang and rang for the bedpan, but with no response from any of the nurses; in fact, the roommate’s aunt, who was visiting, felt she had no choice but to get the bedpan for Mom. What would have happened had the aunt not been there? The roommate went on to say, “tell your mom to be more aggressive. She is so sweet but the nurses ignore her. I usually have to make additional calls for her.” I could only imagine that Mom’s stress aggravated her physical problems.
But perhaps what disturbed me even more was the call I received from an attending physician after dad and I had left for the day. He advised that Mom should enter a combined rehab/hospice facility, recommending one that was not too far away. “Her mobility is limited,” he explained. “She should avoid stairs.” I explained that we had a family room that could easily be fitted with a bed if necessary. “It’s your choice, of course, I don’t really care what you do, but she needs to be in a single-floor residence.” What a brusque response, I thought, but chalked it up to the fact that he, like my parents, was a foreigner, who had not quite mastered American English turns of phrase.
Far more questionable to me, however, was the fact that this rebab was rejected by my mother when she was searching for one for Dad two years ago. And even more disturbing was the fact that it was run by her primary doctor. Was this not conflict of interest, I asked myself. Although I was not paranoid enough to jump to the conclusion that the physicians at the hospital were trying to hasten her deterioration, I did increasingly wonder if they were attempting to profit from her illness—especially over the following weeks in August and September when some of the decisions they made seemed anything but wise or responsive.
My immediate fear then was that they would somehow force Mom to go to their rehab so I was greatly relieved when she was sent home. I felt thankful too that her oncologist believed that she was still fit and strong enough for chemotherapy. The relief, however, did not last for long. Mom had not only become more incontinent, but also more irascible: it was an even clearer sign of her that cognitive weakening that I could not yet fully acknowledge to myself. I can still remember the day she stood up with nothing but a tee shirt and diapers bawling that I was being harsh by forcing her to use the bathroom. She adamantly refused to sleep in her room as long so I was there and insisted on going to a hotel. Although Dad, as I will explain later, generally had a tendency to exacerbate conflicts, I must praise him for his patience in coaxing Mom to sleep in his bedroom that night. There she would sleep at night for the next two months until she was sent to the hospital for the last time.
If we had any hopes that Mom would improve, there were other signs that would thwart them even if we prayed that somehow, some way, they might disappear. It was on the very day I started contemplating the necessity of a second opinion, that Mom began to experience sharp pains in her stomach—a characteristic sign of bile duct cancer. I still recall the bright, sunny afternoon when she went to sit out on the deck by my study only to scream less than twenty minutes later, “my stomach is hurting like crazy. I’m dying!” Dad and I thought she was on the brink of a seizure. I braced myself for another visit to the hospital when Mom started to calm down. For another week or so, these aches would come almost daily, and later on, several times a day.
In the meantime, over the following month, she seemed to look more fatigued. She could barely lift her head to watch her favorite Japanese TV programs. She complained of chills—another sign of bile duct cancer, even when it was near 90: and as such, she would layer shirts and jackets, oblivious to whether they matched. This was not the Mom I knew, always carefully dressed. She would also fail to see objects lying directly before her eyes. All the while, her blood tests during her chemo treatments revealed a shrinking red and white cell count. Yet, rather than chalk it up to the cancer, I wanted to believe that she was still weak from her hospital stay. Or maybe it was the chemo which was said to lower blood counts.
Because she did have some very good days, days when she seemed like her old self, I did not think she was completely hopeless. I was determined to find an oncologist who would give her the best chemo—a combination of gemzar and cisplatin, which was considered the most comprehensive remedy. For the time being, Mom was only getting gemzar as her oncologist feared cisplatin might be too strong for her. But how could I get her to another hospital, the best and closest of which was 45 minutes away, if she got hit by her stomach pains?
Her MRI results in early September provided us with some relief as we were informed that some parts improved even if others worsened. Her oncologist seemed to conclude that she was still reasonably healthy enough to continue the same regimen of chemo treatments. Not long after, one of my cousins—Vanessa, the daughter of Mom’s oldest brother—drove up from Illinois with her husband to visit us. Mom was overjoyed to see them: and I was even happier to see her eat the Japanese meal we bought for her with gusto. She had not shown such an appetite for over a month. I wasn’t sure if it was pleasure at seeing her niece or her fondness for Japanese food, but I felt a certain relief. I would go out and buy her a Japanese dinner every day if I had to.
Little did we know then that her days at home were numbered. I still recall her last full day at home, a Saturday. I made her the chicken soup that I had enjoyed since childhood and which she finally taught me to make. Unlike the previous day, she showed a good appetite, devouring three bowls of soup and noodles along with two bowls of porridge mixed with sweet potatoes. Even though I couldn’t stand being in Dad’s room which always smelled, I stayed there for an entire day.
Suddenly, Mom began to cry that evening. “I’m dying.” “No, you’re not, Mom, you’re looking much better. You ate a great deal today, more so than Vanessa came.” “No, I feel it. I’m dying.” She began to stroke my hair. “Who’s going to take care of you? I worry so much about you,” she sobbed. “My sweet daughter.” And so we sat hugging each other tearfully. “Mom, you will get well. It’s will power. Look at your sister in Alabama. She’s only a few years younger than you. She was sickly as a child and just recovered from her colon cancer. Remember how strong and radiant she looked when she came to visit in June? Don’t you think you can do the same?” She stopped crying. “You are such a wonderful daughter. I don’t know what I would have done without you.”
Any optimism I had that night disappeared the next day as she grew crankier with every hour. As she refused to eat, I felt frustrated and infuriated, threatening to call a visiting nurse. At first, it was just a threat, but as she looked worse that evening, I feared she might have a stroke: and so I called the nurse. Upon arrival, she determined Mom would have to be sent to hospital.
None of us predicted that today would be her last day at home.