by Azra Raza
KITTY C.
June 18, 2018
Conor (Kitty’s son)
As far as my experience, I can’t quibble with the medical element. My mom always had glowing reviews of you and the other doctors who treated her—or to be more accurate, who she worked with. My mom was an incredibly giving person and, as a friend of hers told me casually but poignantly, “She really gave you a good life.” This is absolutely true, and I realize it more and more every day—she gave everything she could possibly give to me. Indeed, she even didn’t want to burden me with the knowledge of her disease for the first several months she was sick, until my aunt Helen persuaded her to tell me. Even then, somehow she shielded me from the worst elements. Helen and I became sleuths who tried to put together the bits and pieces of the progression of her disease and her treatments, to try to form a complete picture of what was happening in her life. In the weeks after she died, Helen and I wondered, had she held out for me? Was she looking at all the chaos in my life saying to herself, “I can’t die just yet because he needs my support”? We still tease her to this day for the copious notes she left on funeral parlors and cremation services, as if, even in death, she had to carry her weight in the family. We always tried to take that weight from her, but to no avail.
Well, I believe our last days with her may have eased my mom’s passing into the unknown. No matter how much you try to give back to someone like this, it never feels like enough. My last moment with her was two nights before she died. She was lying in her favorite spot on the couch in our living room, thin and frail, curled up like a child. I sat with her and ate a late dinner as Eulalee, her aide, took care of the intangibles. This may sound dark, but I think of Eulalee almost as a midwife of death, a kind of shaman who steps in at the end and guides people through the fear and sadness of dying, helps them remain present and accept it, and even guides their loved ones through it all. Like my mom, Eulalee was incredibly giving. She knew exactly what was needed to ease the transition. After engaging with my mom in what limited chat she was capable of, I was getting ready to leave for my apartment and Eulalee told me to give her a hug. My mom was a fiercely independent person, and she often shied away from overt affection, so it was difficult for her to signal when she needed it. But I obliged. Since my mom was not able to even sit up at this point, I sat down next to her and reached my arms under her, feeling her boney back and weak limbs. I saw an elated smile on her face, a feeling of satisfaction as she exclaimed, “You’re so great! You’re so great!”
Was that enough for a lifetime of self-sacrifice and kindness to a son who was sometimes clueless of his mother’s own struggles? No, it’s never enough. But by showing this gratitude, I sent my mom the message that her struggles were not in vain. She was proud and happy that she had raised a partner who could be there in the moment when she needed someone most.
The next day, Helen visited her as she drifted in and out of consciousness. She was traveling, as Eulalee said. Helen, her sister and best friend, gave her the strength to embark on this mysterious voyage. She reassured her, “I’ve got the pearls”—some storied family jewelry—which gave them both a nice laugh in the waning hours. I called from work in the afternoon and spoke to my mom. She was so happy to hear from me. She had no idea where I was or what day it was, but she conjured up a setting where she imagined me in my element. She said, “You’re at the protest? Are there a lot of people there?” I was confused, but I went along with the fantasy and was happy of how proud she was.
The next morning, I got the call from Eulalee that my mom was in the throes of death. When I arrived, she was breathing heavily but not conscious in any apparent way. Helen and Eugene, my half brother (who has the same father), came up to the apartment, and we waited it out. Eulalee knew to the minute when it was coming and told me to lie in bed with my mom and hold her hand. Again, I obliged. I gave her some parting words as she drifted away.
To my surprise, I went into a rage that she had abandoned me. But as I write this, the loving kindness that she gave me is all that I feel. And I take solace in the freedom she must have felt in those last moments to travel by herself, like the bird she always wanted to be.
ANDREW
Alena (Andrew’s mother)
How do I even think about what happened, and did we do the right things? Do we know even now what would have been better? What eats me is his last radiation therapy. The radiation therapist came in and said, “It’s your choice. You can do it or not do it.” I was so confused. I asked him, “What would you do?”
Did he stop swallowing because of tumor or the radiation? I spoke to someone whose nephew was dying of cancer at twenty-nine. They told him, “You will have a month to live.” Right before the doctors told him, he was full of life. After that, he broke and died in twenty days. Andrew had no chance of surviving. Would he have died before sixteen months if he was told that? As a mother, I would take every day. Every extra minute he could live and I could see him. An older man I know in Israel also has glioblastoma, and he is alive, though in a wheelchair, six years later. I would accept a wheelchair for Andrew as long as he could live.
I wish I knew what gave him a better quality of life—to treat or not to treat him? When given a choice, until the last day, Andrew said, “I want to live and will do everything to beat this cancer.”
Azra, I have to tell you, no one was honest with me. No one told me. But even if they had, what would I do?
Even my friend who stayed with me the last night said, “It is time to let him go.” I couldn’t. I always had hope. When he asked me, “Ma, is this it?” what did I say? He was still walking, getting radiation treatment, but walking with a cane. We were coming out of the apartment. He just turned to me and said, “Looks like I just got the bad lottery ticket. I’m not gonna make it.” I said, “No one knows. Perfectly healthy person could get hit by car and die.”
His father was more accepting.
Andrew did not lose hope. Even when he failed the swallowing test, he wanted to take it again.
I keep thinking about this: If he had no chance to live and telling him would take away his hope and kill him faster, could we give him placebo instead of that terrible treatment with chemo and radiation therapy? At least he would have kept thinking he was getting treatment, not lose hope, and it would not kill him faster. Why make his life more miserable with those poisons?
When he started with the terrible headaches after the first round of surgery and chemoradiation therapy, we called NY General Hospital and were not getting any satisfactory answers. They told us it is probably a sinus infection, he should take antibiotics. He had no relief and the headaches were killing him. We called a few times, and they made us feel like they didn’t want to be bothered. When I called a few more times in a row that he was having terrible headaches, they seemed annoyed. Finally, they told us to go to the ER. By then, he was throwing up and almost losing it. In the ER, scans showed tumors all over. When Dr. C. found out Andrew had metastases all over, she was very upset. Then we went to NY Hospital, and she never called once to follow up to ask about what happened to Andrew, was he even alive. We just never heard from them again. It still bothers me to think of how they treated Andrew. Sure, we need hope, but we also need more compassion. It’s great they follow the books to do things, but compassion is not in their books.
And what of NY Hospital? His oncologist just disappeared after he came once, joked a little, and left. That was it. After that, he just never bothered. For more than three months, Andrew was admitted, going through hell, but the oncologist, he never came.
Kat (Andrew’s sister)
Because Andrew never accepted he would die, I cannot. Looking back, his condition was so brutal. He was receiving special pills from California with THC. He was taking a very strong dosage. He did not like taking it because he would wake up high and drowsy, and anyway, we couldn’t tell if it was helpful at all. Only twice I saw him scared. Once after the first surgery when he was in rehab. One morn
ing when I arrived, he started sobbing, “Why is this happening to me? Am I going to die?” I did not know what to say. Should I say, “Yes, you are dying”? Instead, I said, “We are all dying.” At the end of Andrew’s life, Charles and Rebecca wanted him to acknowledge that he was dying. Sheher did not. Andrew liked attention but not pity. He did not want to admit dying because then people would pity him. That was Andrew.
The second time, he was depressed for a month or so when things started going downhill. Mom moved in with him and wanted to be there all the time. He was trying to negotiate his personal space. He felt she was taking away his privacy and independence. Once when he felt better and they were having lunch, I talked about something in the future, and Andrew said, “You know I am always going to have to deal with this.”
He showed sadness and disappointment every time doctors told him bad news. He would always respond by saying tomorrow would be different. He understood how much it would hurt me and Mom so he made it seem like it was not as bad as it really was. The thing that hurt us the most was how he was abandoned by his oncologists both at NY General and Special Hospitals.
Sheher (our daughter)
(Opening remarks at the Fifteenth Harvey Preisler Memorial Symposium, November 14, 2017)
On my mother’s side of the family, we have the sweet custom of being welcomed into the world at birth with an adult whispering the Azaan, or the Islamic call to prayer, into the newborn’s ears. When I was born and being handed over to my mother’s older sister for this ritual, my father intercepted. He snatched me from the nurse and repeatedly whispered into my ears, “Quantum gravity, quantum gravity!” Believe it or not, the first letter of the alphabet my dad taught me was G, for “glavity,” as I pronounced it. This was my dad: a scientist to the core, one who harbored an unmatched respect and appreciation for seeking answers to the wonders and mysteries of the universe through a serious commitment to the pursuit of knowledge.
The truth mattered to my father more than anything else. This is what has motivated me at a deeply personal level to devote myself to multimedia journalism as a venue to uncover the secrets of science, technology, and medicine. My childhood is filled with memories of evening excursions to the Lincoln Park Zoo, the Shedd Aquarium, and the countless at-home experiments and science fairs my father and I participated in together. And after studying premed and working in Dr. Siddhartha Mukherjee’s lab for the last few years, I’ve found my calling in science journalism.
Following my father’s footsteps, my biggest hope is to improve the lives of others. That is what my dad devoted his own life to. He grew up in Brooklyn, the child of parents who had migrated from Eastern Europe, escaping the Holocaust. He took an IQ test in high school: it was off the charts. He didn’t have to take any science courses during his last two years of high school because he knew the syllabi better than his teachers did. And at fifteen, he made the decision to dedicate his life to cancer research. He never looked back.
What a cruel twist of irony it was that as he was directing the Rush University Cancer Center in Chicago, he was cut down in the prime of his life by the very disease he had dedicated his life to curing. I was only four when he was diagnosed and eight when he died. My parents took great pains to never mention the c-word in my earshot and yet most of my memories of Dad are related, at least in part, to the presence of this nameless “other” in our lives.
Even though I was too young to know what was going on at any tangible level, I had some sort of instinctual knowledge that something was terribly wrong. I could sense my mother’s struggle as she was navigating through stages of optimism, pain, dread, despondency, and eventually hopelessness as my dad underwent a seemingly endless stream of experimental treatments. These stages are what most cancer patients and their caregivers experience.
Another example is Andrew, one of my best friends. In the spring of 2016, he developed numbness and tingling in his arm, which made him exercise more vigorously. One afternoon, while visiting family upstate, he felt weakness in his right arm. He was driven to the NY General Hospital emergency room. Within days, Andrew was quadriplegic: a nine-centimeter tumor was found in his neck. During the emergency operation, neurosurgeons couldn’t completely remove the glioblastoma multiforme that had already enveloped several upper vertebrae.
The year that followed was characterized by a mixture of hope, fear, anxiety, panic, pain, more pain. Too much pain. Andrew received round after round of chemotherapy, radiation therapy, immune therapy, more surgery, placement of a shunt, and then more chemotherapy and more radiation and more immune therapy. Throughout all these treatments, Andrew experienced indescribable agony and discomfort from the side effects, yet the tumors continued to multiply. He lost his battle on August 25, 2017. Andrew was twenty-three years old. What struck me the most throughout his ordeal, during which our friends and family never left his side, was his positivity and selflessness. He never lost hope that he’d get better, and spending time with him—even in the ICU—felt like we were just hanging out. He rarely—if ever—complained and always went out of his way to ask everyone else about themselves and shifted the focus away from himself.
Some of the best times of my life involve traveling through Europe with Andrew and our other two best friends, Rebecca and Charles. We had a great time clubbing in Berlin, visiting Versailles and the Louvre in Paris, fighting over bunk beds in London. Throughout his illness, we sat with his mother and sister, his grandmother and father, at NY General Hospital and at NY Hospital, laughing with Andrew, crying among ourselves in the waiting room, choking over food at night thinking how Andrew could not even swallow his own saliva, and staying up night after night in a cold sweat, dreading the worst.
Andrew and I shared December birthdays. Alas, neither Andrew nor my dad will be with me to celebrate my twenty-fourth this year. Picking up a yellow rose petal from Andrew’s grave and handing it to my mother for safekeeping forever, I realized that both my childhood and entry into adult life have been marked by the intrusion of this “other”: cancer. I have been forced to look at life itself through a prism of psychological and physical suffering caused by this deadly disease, for which there seems to be no solution. For me, life can never be business as usual.
I stand here today and entreat you not to forget what Harvey Preisler and Andrew Slootsky went through and what thousands of cancer patients are going through every day. I am deeply humbled by the courage and nobility of endurance I witnessed firsthand in my father and in Andrew. Let us pledge to work together at all costs to help all cancer patients.
I HAVE TOLD the stories of men and women facing death. These remarkable souls continued to inspire and humble their caregivers by their poise, their dignity, their grit, right to the very end. Death is not a failure, pervasive societal denial is. Greek gods could not accept mortality. Humans do.
Immortals are mortal, mortals immortal,
one living the others’ death, and one dying the others’ life.
—HERACLITUS
EPILOGUE
THE DAWN HAS ALREADY ARRIVED
MY OLDER SISTER AMERA, MY BROTHER TASNIM, AND I TOOK OUR mother shopping in Buffalo one sunny summer afternoon in 1988 when she was visiting from Karachi. Tasnim, a cardiac surgeon at Buffalo General Hospital, had already performed hundreds of coronary bypass surgeries, and his group was leading the charge in heart transplants in western New York. It was impossible to walk fifty feet in the mall without being stopped by one of his cured patients, pumping his hand enthusiastically, beaming at our mother, awash in gratitude because her son had heroically saved their lives. Of course, at home, Tasnim was less eulogized, we siblings refusing to let him develop the God-complex of surgeons. We teased him mercilessly at family gatherings. My sister Sughra would innocently ask, “Aps, what do you call two cardiac surgeons looking at an EKG?” I would reply, deadpan, “A double-blind study!” Thankfully, no one likes a joke better than Tasnim, who would gleefully address the pediatrician (my sister Atiya), radiologist
(my sister Sughra), and oncologist (me), “Statistically speaking, nine out of ten injections you ladies give are in vein.” He loved calling us by an acronym that we reserved for some of our ex-boyfriends—“Hello, sisters, what is the NATO group up to this evening?” (NATO being our code word for No Action Talk Only)—or he would ask us sweetly if we had heard of the mechanic, working on the heart surgeon’s motorbike, who said, “So, Doc, look at this engine. I open its heart, take the valves out, repair any damage, and then put them back in, and when I finish, it works just like new. So how come I make $40,000 a year and you get $40,000 a month?” The surgeon replied smugly, “Try doing it with the engine running.”
As we were returning home, my mother asked the question I had been dreading.
“You have been in Buffalo for almost ten years. I have never met any of your patients. Why are heart patients doing so much better than cancer patients?”
She had put her finger on the heart of the matter. Tasnim and I often had the same conversation. Our conclusion—heart doctors recognized that the only effective treatment was prevention and early intervention. The equivalent of cancer in heart disease would be a heart so severely damaged that the only possible treatment would be a transplant. Advanced cancer is like this end-stage heart disease, where only extreme, heroic measures have the potential for saving lives.
