Lives Remembered

Tucked away in NASA’s online archives is a little known fact: On 19 March 1961, tiny particles of matter from another galaxy had hit the upper atmosphere of Earth over New Mexico, USA. Billions of radioactive particles that had resulted from the forceful splitting of these outer-space particles were showered across the area. Aside from this astronomical event, nothing of historical significance happened on this day. But an ocean away, in the town of Benoni, Transvaal, South Africa, a very special baby was being born. She was the second daughter of Victor and Fong Keen Look, both hailed from Guangzhou, China. They named their baby girl Lily (spelt with one “elle” on her birth certificate but, for some reason, with two “elles” in her passport and other official documents. She preferred “Lily”. ).

I like to imagine that some of those radioactive particles had floated across the Atlantic Ocean and somehow zapped their way into this newborn infant, because Lily certainly had an energy and zest for life that was simply “out of this world”, even up to her last days of cognizance!

Being undeniably the smartest of the three daughters born to our parents, and the one with the most vivacious and vibrant personality, Lily had no trouble getting admitted to any of the convent schools she interviewed for. Her school years were relatively uneventful, save for a brief unhappy period in her kindergarten year when for logistic reasons she and Jannie (JJ) were sent to live with family friends. It was in this period that she and JJ forged a close sibling relationship that would last throughout their lives together.

I hate to admit that Lily liked having fun more than schoolwork, so her grades were average at best, which was a sad waste of her real smarts and talents. Because of this, she didn’t get into university (the expectation of every Chinese parent for their children in those days), but she enrolled in Technikon (a local vocational training college) and studied to become a Pharmacist. However, “Girls just wanna have fun” and this describes Lily in every way. She eventually dropped out of the Pharmacy course and instead completed a diploma in Inorganic Chemistry. She worked for a number of years at AECI, handling plastic explosives for a time before transferring to the less dangerous area of paints.

During this period, Lily had a large group of fun-loving friends and they often travelled together to all parts of the country. Among these friends was the man she would eventually marry, which she did while in her mid-20s. The marriage barely lasted a year and was dissolved quickly in the divorce court because it had been an abusive one, during which she had experienced 2 miscarriages. Surrounded by too many painful memories, Lily decided to make a fresh start in Canada, and she officially landed in Toronto in 1990. She worked in several administrative positions and was well liked by her employers and peers alike, some becoming life-long friends.

At around late 1991, Lily started experiencing nauseating headaches that were misdiagnosed by all of 3 neurologists as being migraines. By January 1993, these “migraines” had worsened and she switched family doctors to one Dr. Mark Nowaczynski. This wonderful physician recognized the seriousness of her condition and immediately requisitioned a CT scan (something the afore-mentioned neurologists had insisted was unnecessary).

Lily was undeniably the prettiest of us three siblings, with the most outgoing and vibrant personality. She was never lacking for dates and friends.

The scan revealed a 5-cm-diameter ball of astrocytoma (a type of brain cancer cells) in her right frontal brain lobe. [I received Lily’s phone call about this on the morning (Singapore time) of Chinese New Year Eve 1994, just before I was heading out for work. Despite all businesses shutting down by midday in preparation for the week-long lunar celebrations, I somehow managed to fly out to Canada on that very same day, thanks to an empathetic official at the Canadian Commission in Singapore and superb cooperation by the local bank, British Airways, and my employer. My parents arrived from S. Africa several days later. JJ had a reason for being unable to join us, but I forget what that was now. We were all stunned by the unexpected news and fearful of what it meant in terms of Lily’s short-term survival. I recall ushering in the Chinese New Year with her in her small apartment and later staying awake watching her as she slept, with fear gripping my heart that those would be our last days together.]

Lily underwent brain surgery (performed expertly by Dr. Peter Mueller at St. Michael’s Hospital), followed by a period of radiation therapy to kill off residual tumor cells. Dr. Mueller declared the operation a success and we all breathed a sigh of relief that this was just a bump in the road and that Lily would be okay. We all went back to life as normal and Lily even resumed temporary work after a brief period on disability welfare.

By the end of the treatment, Lily had lost all her hair and endured immense pain (thanks in part to an impatient resident neurologist who had the habit of yanking the turban-like bandage off her head to examine the stitches, instead of gently easing it off). But throughout it all, Lily remained a trooper!

She was named “Laughing Lily” by the hospital staff, because she remained humorous and cooperative throughout her experience, and she did have a characteristically loud “Ho Ho Ho” laugh. Whatever else she had lost from that diseased part of her brain (e.g., her artistic abilities, analytical capabilities, and capacity to ever dream again in sleep), her sense of humor remained solidly intact.

One of the anti-seizure drugs she was taking, Dilantin, had the side effect of swelling, and within a year she was quite overweight for her short height. Her hair never grew back over the affected area that was radiated on, so she had to wear a wig in public, but she was never too shy to whip it off in front of close family and friends, especially in the hot summer months. [Lily’s friends loved her all the same regardless of what she looked like – she was still the same crazy fun-loving person they knew and loved. She would later say to me, “If your friends or lover left you because your looks changed for the worse, you need never regret ridding yourself of such superficial people anyway!”]

Despite these physical setbacks, Lily continued to register with dating clubs, go on blind dates, attend the theatre and movies, party like an animal, and even risked a trip to Singapore to visit me (it was a risk because she was still prone to seizures). Her zest and appetite for life never waned! [It was this spunky courage of hers in continuing to blind date that inspired me in 1995/6 to venture into the world of Personal Web sites, something that was unconventional at the time and ridiculed by the majority. But I made many new and lasting friends this way and it would eventually lead me to meeting my husband Robert many years later. So, in more ways than one, I owe my union with Robert to Lily’s example of courage and determination.]

Lily remained in remission for exactly 5 years during which time she tried to resume p/t work under various temping agencies. However, she was unable to remain gainfully employed because the tumor had destroyed much of her analytical abilities, which in turn affected her work.

[JJ’s death in August 1997 shocked me into the realization that my sisters were not invincible, and that family is forever more important than career. I faced the reality that if JJ could die from supposedly curable non-Hodgkin’s lymphoma, then Lily’s statistical chance of surviving her type of brain tumor beyond 10 years was slim. So I applied for Canada emigration and finally left Singapore for Toronto in July 1999.]

By January 2001, Lily had started to experience seizures in multitudes again. I recall the morning before our scheduled appointment with Dr. Mueller to discuss her recent CT scan. She and I had gone to a bar-restaurant at Eaton Centre and shared a plate of chicken wings with blue-cheese dipping sauce. We had discussed what to do for the rest of the day and Lily willingly posed for this photo and laughingly called herself “The Bride of Frankenstein” From both JJ & Lily, I learned the most important lesson of all — that true beauty lies in one’s heart, not in one’s looks. chatted as if we had no worries in the world. Then we headed over to St. Mike’s where Dr. Mueller delivered the shocker – the tumor had returned…

Lily was silent after receiving the news and I didn’t know how to comfort her – words are pointless and meaningless in situations like this. I suggested we go see a movie – she knew I wasn’t a fervent movie go-er like she was and joked that I was doing this only to make her feel better. We went to see “American Beauty”. Throughout that and the bus ride home, she talked only of general things.

But once she got home and into her bedroom, she sat on the edge of her bed and finally broke down and cried. “I’ve done all the doctors have told me to do; followed everyone’s advice no matter how difficult & painful it was. Why does this have to happen to me still?” All I could do was put my arms around her and cry too. I had no words of comfort, no solutions to her nightmare – I had always been able to solve Lily’s financial problems, stood up against her abusive ex-husband for her, and vainly thought of myself as her general life-saver, but at that very moment I had never felt so useless and helpless in my entire life!

But more important to stress is that aside from that day in Feb 1994 when she called me in Singapore to tell me of the tumor, this later upset in Jan 2001 was the only other time I ever witnessed hopelessness from Lily throughout her illness. At all other times, she resolved to continue the fight for a complete cure — no matter that the cure was worse than the disease itself — such was her determination to live life to the fullest!

In March 2001, Lily managed to celebrate her 40th birthday, which we did at home with our Canadian cousins and all their toddlers. It was probably one of the best birthdays she could ever have had because she loved all these little kids immensely (she loved children in general), most of whom she had played with since their births. [I had bought “Mamma Mia” tickets because she loved musical theatre, but regretfully we had to sell off the tickets because her condition had worsened too much to attend. I have since never been able to bring myself to see that show, because it just wouldn’t be the same without her company.]

Lily was scheduled to undergo another brain surgery in July 2001 to remove the new tumor. Prior to this, she was enlisted into a clinical trial of experimental chemotherapy at Princess Margaret Hospital. The chemo was unsuccessful and Lily’s condition worsened steadily. She had periodic falls at home, in the bathroom, in public – it would happen at any time, anywhere. Her overweight and weakness made it impossible for her to get up on her own, and she would sometimes lie for hours on the cold hard bathroom floor in the middle of the night before one of us discovered her there.

Lily finally never underwent the July-scheduled surgery. In the interim, fluid had collected in her mid-lobes, causing pressure on the brain and increasing the seizure episodes. She had to have emergency surgery to drain the fluid away, some time just after her birthday. A few days later, Lily had a delusional panic episode, where in the middle of the night she had tried to escape from the hospital on her own. Her bed was wheeled into the corridor so that the Nurses’ Station could keep an eye on her until I arrived. Upon seeing me, Lily was like a sheepish young child, scared and guilty about what she’d done. I stayed with her that night in the ward — it was the first time I witnessed Lily the lucid adult starting to erode away…

Lily’s legs and left hand had already become very weak at the start of 2001, and she was eventually wheelchair bound by April. She relented to using adult disposables when her bodily functions finally became uncontrollable, something I knew was extremely hard for her as she was always proud of her independence. Worse, it was her “baby sister” she had to rely on for her personal hygiene needs – this was never how she wanted to be in front of me as she had always wanted me to look up to her. I knew it crushed her emotionally and her pride was shattered, but she always laughed it up in front of me, joking that she was my “baby” now.

In May 2001, Lily had her last set-back as a fully cognizant person. We rushed her to St. Mike’s emergency where she lapsed into a coma [At one point, when they inserted the catheter through her urinary opening, her eyes shot open, her head jerked forward, and she gripped my hand until her nails dug into my skin. It was all I could do to withstand the pain of her nails digging into me – I can only imagine how painful that procedure must have been for her to have reacted in such a way. For the life of me, I don’t understand why a general anesthetic can’t be applied for this procedure!]

It was at that emergency stay that Dr. Mueller pulled me aside and advised that there was nothing more they could do for Lily. He impressed upon me that it would be cruel to subject her to more painful surgeries just to keep her alive and insisted we commit her from that point onward to palliative care only. No matter how many times I had prepared myself for that inevitability, there was nothing worse than hearing it from the mouth of this kind surgeon who for so many years had represented our only hope for Lily. For me, the feelings of helplessness and hopelessness were simply overwhelming!

Lily remained in a coma for 1 week, during which time we stayed at her bedside at St. Mike’s. Many friends and family visited and coaxed her to wake up… to no avail. Then, on Father’s Day 2001, with our dad at Lily’s bedside, talking gently to her as he did every day, her eyes miraculously flew open, and she responded to him like she had just woken from a deep sleep. It was the best Father’s Day gift our dad could ever have received!

We resolved to care for Lily in surroundings familiar to her, so we brought her back home after a further week at St. Mike’s. For the next 2 months as a “palliative care” patient, she was home-visited by nurses and doctors from the Yee Hong Centre. By this time, her mind was becoming mostly confused and her spatio-reasoning was gone. [I recall trying to convince her she was lying properly in her bed while she argued that she was lying across it and couldn’t understand why I wouldn’t help her to twist back to the proper direction. She also believed the paint cracks on the wall were snakes and kept warning me, “Watch out! It’s coming!” The workings of the brain are a strange mystery indeed.] Yet, she also had moments of lucid clarity where she would be able to follow my instructions and react and respond to what I said and did. I couldn’t quite place where exactly her mind was at during this period.

Our days lapsed into a routine of wake-up for morning medication, personal hygiene, exercises in bed, more medication, and meals. We kept the tv on in her room to keep her occupied. Because she was bed-bound by this stage, she needed to do some leg & arm exercises to avoid muscle wasting (atrophy). Our favorite song to do exercises to was “Row, row, row, your boat”, which I sang to her while we moved her hands and legs about. She would always be smiling while we did that; she really enjoyed those moments of interaction. [People say attending to the infirmed is a tiring burdensome chore, which undeniably can be. But the truth was that I could have looked after Lily like this forever if it meant having her with us still — caring for her was an honor for me, never a chore.]

Lily had a final collapse on the night of 22nd August 2001. She was transferred by ambulance to Scarborough Grace Hospital’s emergency unit, and thereafter to their Palliative Care ward where they could administer morphine to her under controlled conditions — the morphine was for severe headaches and muscle pain; and because the temperature control centre in her brain was breaking down, she was experiencing painful “brain fever” as well [Likened as the discomfort of a bad bout of flu, except 100 times worse]. In those last days, she could no longer hold down food and was slipping between lucidity in one moment and unresponsiveness the next.

My parents & I took turns holding vigil at her bedside – after what had happened to JJ (who had died alone in the middle of the night in a hospital bed), we were determined not to repeat our mistake with Lily. We did not tell anyone where she was – she was in constant pain and
needed complete quiet, and we simply felt that a constant stream of visitors announcing their presence to her, however well-meaning, would have caused her great disturbance and discomfort.

At daybreak of the 10th day, my parents were at home taking a much needed rest before their day vigil with Lily, so I was the honored one to have been at her side when the fateful moment arrived. [Although I didn’t do her any favors then either. Despite that just a few hours earlier (after watching her increasing discomfort throughout the night), I had whispered in her ear that it was okay for her to leave us and to find JJ and peace, I incredulously tried to resuscitate her ER-style when the nurse informed me Lily was in her final stages. In a moment of panic and unwillingness to let go, I pushed my hands down hard on her chest: “Breathe Lily, breathe!” I only stopped when my pumping actions caused her lungs to choke out some spittle. Thinking back on what I’d done, it was just as well the nurse had left the room, as I would probably have been dragged out for disturbing what should have been a peaceful and dignified death.]

Lily breathed her last in the wee hours of September 1st, 2001… she was 40 years old.