The Eye of the Storm, Part 2
At this point, on a Tuesday morning, hope was clearly running out. I wondered to myself how much longer Mom would have. In fact, later that afternoon, there were plans to move her to the cancer ward although I didn’t understand why since no cure could remotely be possible at this point: in retrospect, it was presumably to move her from a much-needed ICU room since she most likely was not going to wake up.
It all felt ominous to me as they wheeled her to what would be her final destination. For one thing, the ward seemed to be the farthest away from the entrance—as if patients were not expected to leave. It was also situated in a much older and somewhat dilapidated part of the hospital dating back to the 70s at latest, making it feel dark and more than a little creepy. The corridor seemed much narrower and more crowded. There was chipped paint in places. Many of the rooms looked desolate especially since they faced a brick wall of the courtyard. Was Mom going to spend her last days in this depressing environment?
It was not until the previous day--the day my mom had her stroke--that I had discovered there was a gastrointestinal (GI) oncology department at the hospital. I was furious. Why was she assigned a hematologist in the first place? After some research, I discovered that the hematologist was new in the local area and needed patients. Couldn’t they have added a GI oncologist at the very least? Yes, her oncologist had stellar credentials--on paper, at least. And as mentioned earlier, Mom seemed to like him so much. Yet, what does it avail if his area of specialization is very different? Would he be up on the latest research on such cancers and their treatment? For instance, I would be well placed to supervise a thesis on any genre of English literature from the pre-Romantic and Romantic periods, but not so much for a student working on Shakespeare. Nor would I be able to supervise one on American beatnik writing. A Ph.D. in English literature from Oxford truly wouldn’t matter at that point.
Angry and distraught, I snapped at one of the visiting doctors when he came to examine Mom even as I tried to be tactful in doing so. I complained that Mom should have had a GI oncologist in the first place since her cancer started in the bile duct. Wasn’t that common sense?
As I explained this to the visiting doctor (using examples of Chaucer and Jane Austen since he was unlikely to know what pre-Romantic literature was), he got very defensive. I told him that not all patients and their caregivers were ignorant. That I was an academic and that their decision to assign a hematologist as her one and only oncologist made zero sense. He replied, "well, if you're an academic, you know that results cannot always be assured. Maybe your mom would still be suffering." I answered, "That's not the point. She may--but perhaps she might have a better chance at survival. At least, we would be assured in the knowledge that everything was tried. After all, how is a hematologist going to know the latest research in GI treatment? There's a reason why there are specializations in academia!" He looked like he was ready to explode. But I knew I was right. (And hell yeah, my doctoral institution is much more prestigious than his third-rate one, HA!)
The doctor continued to insist stubbornly, "but there are no guarantees"--to which I replied, of course, "there are indeed no guarantees in life or anywhere, but it is highly unprofessional to not try the best route possible!” Why the FUCK is that so difficult to grasp, I thought to myself. He—and others in his profession—must think it’s easy to gull and gaslight the poorly educated. They’re not used to people who will push and probe. No wonder there is such little trust of the entire medical profession. (One wonders too if the anti-vaxxers—as foolish as many are—have not been influenced by legitimate distrust?) In fact, this very hospital, as I found out later from a nurse who once worked there, had only just recently settled long-standing child abuse and molestation suits extending back many decades as the staff and administration continued to defend a physician who had abused children throughout his medical career. When the experts lie and gaslight, they do everyone—including themselves—a grave disservice.
I guess the visiting doctor must have been upset enough to relay this conversation to my mom's primary doctor who called me that night: he generally never called us any later than noon. But I stuck to everything I said and repeated it verbatim. Since my mom was now going to the cancer unit, I told him I was going to speak to the head of the GI oncology department.
For some time, I contemplated suing the hospital but refrained from doing so because maltreatment of the elderly is exceptionally hard to prove, particularly where no obvious abuse or negligence is apparent: others have shared similar experiences with me. And I certainly didn’t have the extra dough to pursue one even if there were very solid grounds for a malpractice suit. I learned this from another woman whose mother was also nearly the same age as mine—and who was given a drug that she believed drastically hastened her deterioration. Yet perhaps this is all a vicious cycle, I thought to myself. If a ready excuse could be easily made for elderly frailty, why should there be any effort to redress this situation? Especially if they were less likely to be reimbursed by insurance companies in the first place?
This is probably the only time I ever regretted not pursuing medicine. It was only when I read of a doctor who was unable to save his mother under the care of another physician that I found any sense of respite. Even they are not assured of good outcomes where their own family is involved, it seemed. As such, it led me to wonder if errors can be made even with the best intentions and knowledge. Perhaps my mother was indeed in so poor a condition that Sunday night that she was, according to my pharmacist cousin, overdosed for her general frame and build.
If only I had stayed that night. But then, what would I have known? I would probably still have assumed that she was given an appropriate dose. Perhaps when she called for me, her mother, and siblings, I would have known something was wrong?
On the following day, I got a call from the Fourth Angel in the late morning. Bless the woman I spoke to: she was my age, but had been suffering from my mom's cancer for the last 4 years even though she was also only given a 6-month prognosis. But somehow she endured, refusing to give up. She tried every cure and treatment possible: in fact, more than seven years later, she is still thriving, informing the general public on bile duct cancer. We talked about a lot of other matters and I left for the hospital feeling considerably better.
One of the things she told me was that many stroke sufferers still have their hearing intact. So when I visited Mom, I played some music for her—some of her favorites, some of ours, and some of my childhood favorites. She always enjoyed Schubert's Ave Maria, so I started with that. Then to another Schubert piece, this time an impromptu I played back in college, There was a waltz from Berlioz's Symphonie Fantastique that she always hummed along to, Mozart's "Rondo Alla Turca" and Beethoven's Fur Elise, both of which she used to play all the time during my childhood years.
What amazed me was how Mom started to move her arms and legs; it was almost as if she were trying to dance to the music. Then I played some tracks from my favorite childhood album, hoping that it might jolt her memories and revive her. After all, she was always reminding me how much I loved The Sound of Music when I was little (“yes, Mom, I know!”):
"The hills are alive with the sound of music. With songs they have sung for a thousand years..."
"Doe a deer, a female deer…”
"Raindrops on roses, whiskers on kittens, bright copper kettles, and warm woollen mittens..."
Then I remembered one of her favorite tunes from a movie which we watched numerous times together and which she would always try to sing along to:
“Somewhere over the rainbow, way up high…”
Mom continued to move...could she really be hearing the sounds of music? Could she then hear our conversations? Maybe she did hear me telling her every evening that I loved her. That I wanted her to get better. That we would return home and she would recover. And maybe, just maybe, we could go to the mall like we used to. (OK, I didn't really think that would happen…)
That evening, Dad came home with me because he was feeling quite tired since he'd slept there Tuesday and Wednesday. He’d done his duty, I thought, and I didn't want him to risk his health any more than necessary especially since it was not altogether clear how conscious mom was after all: would she really know he had left? It would be just one night anyway.
Yet, seeing her move to the music made me think at least Mom had not gone altogether; she probably was attuned at some level. She may not have been functioning overall, but she was certainly sentient. If I could just see her move over the next month, I wouldn't feel so depressed. Better that than losing her completely. (Looking back, I realize how selfish that sounds…)
But the next day, a Friday, October 3, Dad said he felt a cold coming on—so I went by myself. I played music for Mom, but there was very little reaction. She wasn't moving her arms and legs like the day before. Was she feeling worse? Or did she know Dad was not there?
I also spoke to the head of the GI department. He was very polite and understanding but tried to tell me it wouldn’t have made much difference if we’d gotten a GI oncologist since her cancer was discovered at such a late stage, particularly at her age. And anyway, he explained, the doctors who are conducting the latest research are not the ones practicing. I still found that difficult to believe, but was now slightly more willing to accept that Mom’s age and general condition may have been challenging factors. At any rate, he appeared sincere and undefensive.
And yet…and yet, I thought to myself. Thoughts of the last two months kept replaying in my head. Maybe if Mom listened to me and didn’t have an accident downstairs, she wouldn’t have gone downhill so quickly. Maybe I shouldn’t have called the visiting nurse that following Wednesday after her chemo treatment; that stay in the hospital definitely weakened her. Then maybe I could have brought her to Yale for a second opinion. Or maybe, just maybe, she shouldn’t have had the chemo treatment. After all, that 86-year-old woman lived for another three years despite the initial prognosis of 6 months. Maybe Dad shouldn’t have taken her to Taiwan since that’s when her cancer probably started. And maybe we shouldn’t have moved to Connecticut. So many maybes, so few answers.
But amidst all this, I noticed that the skies were clear and pristine for the first time since Monday. Nary a hint of drizzle or rain. This was only the eye of the storm. I left at 6 pm, feeling almost utterly deflated. There was little I could do now. I probably would have stayed longer had I known that she only had seventeen hours left on this planet.