by Azra Raza
Around 2015 Vice President Biden called me about his son’s brain cancer, and I got involved with some of the diagnostics. His son passed away in May of 2015. By October I had written a two-page white paper talking about accelerating cancer immunotherapy using genomic sequencing and big data. My job as a physician, a surgeon, a cancer oncologist, immunologist, NASA ex-scientist, and former CEO is to orchestrate all of this. We are pursuing a very, very ambitious program. I’m not saying we’re going to cure cancer by 2020, but maybe we’ll be able to activate the body’s T cells to fight it.
Michele and Patrick helped me in one unexpected but highly desirable way. They gifted Columbia University with an endowed chair, the Chan Soon-Shiong Professorship, which I was named to receive and which has provided me with protected time to devote to clinical and basic research. In a long-running interview, Patrick shared with me his strong belief that the cancer cell creates an evolving, changing environment in response to the treatment we impose on the patient. Hence, he believes that basic research needs to be performed within the dynamics of a clinical treatment, rather than at a static point in time. As a consequence, he has devoted his resources in developing a cancer vaccine by activating the patient’s own immune system and wishes to support basic research in the characterization of the cells surrounding the tumor in real time. Patrick and I remain in touch constantly and debate cancer therapy questions regularly.
As for finding patronage for my tissue repository, I remain at square one.
For Patrick and Michele, the goal has never been just about following their passion for self-satisfaction. Their goal is to unite their passion with compassion in the service of humanity. Such a quest is led less by eyesight and more by insight. They have aimed high, they made big plans, and they work relentlessly toward their goals. It will be a lifelong journey, because in the words of Charles Evans Hughes, “medicine is testing us every day as is life itself. Success must continuously be won and is never finally achieved. Every day puts at risk all that has been gained. The greater is the gain, the greater is your risk of loss. One must never look at the end of the road, as one is always at the beginning of a new one.”
I REMEMBER A day, earlier on in her disease, when JC was in an uncharacteristically somber and reflective mood. She sighed and confessed that she regretted not having valued her family more when she was well; she especially mentioned the pointless, inane arguments with her live-in mother-in-law over trivial issues, leading to days of unpleasantness. Facing a lethal illness at the age of thirty-four, JC wished for a second chance so she could show everyone the better angels of her nature. Confinement by disease allowed her to free her spirit, made her more generous. After being in remission for a year, one day she was in clinic for a visit and mischievously confessed that in the middle of a recent jaw-jaw with her mother-in-law, she had suddenly stopped in her tracks as she realized how “normal” she must be feeling. She had reverted to her whining, entitled, temperamental, vacuous predisease self. “And those are some of my good points!” she groaned. “I tried to emerge a pearl out of the oyster of my illness. Instead, I have ended up impersonating the old crab. Warning, Dr. Raza! When you find me being nice, suspect relapse.”
Maybe it was because those were my salad days. Maybe it was JC’s ravishing personality. Her youthful, stunning good looks, her vulnerability as a new mother, her wicked sense of humor, her poise, her willingness to befriend and school a fresh, insecure, junior attending physician in ways of knowing cancer, ways of knowing life. Aristotle defined tragedy as a moment of discovery. The discovery has to be, somehow, purged. When Oedipus found out that he had killed his father and married his mother, he had to blind himself, wandering off as some kind of a prophet. The years with JC shattered me in ways I was not aware of until I tried to put myself back together. The destruction and reconstruction process, painful, stepwise rehabilitation of my soul, marked by many false starts and regressions, was my equivalent of blinding and un-blinding myself. I stopped being the newly minted warrior oncologist. I emerged as someone who was no longer startled by cancer’s infinitely unpredictable, testy tolls, its gruesome cruelties; rather, I became an adult who had learned to stop twinning the suffering of individual patients. The mystery of the world is the visible, as Oscar Wilde pointed out, not the invisible. JC helped me make that leap from dallying in the abyss of cancer’s ruthless nihilism to consideration of more humanistic, humanitarian issues of life and death. JC gave no lectures; she wrote no books. It was her sober acceptance of the unspeakable tragedy in a thousand little gestures that slowly but surely parted the curtain, allowing me to witness grace in all its heroic splendor. She gave my eyesight the insight it needed. JC made the invisible visible and opened entire new mysterious worlds for me to wander in as I negotiated each new patient who came with their own unique set of cryptic and mysterious challenges.
The best tribute I could pay her when she died was to pledge my life to study and cure the disease that took hers. If I have seventy-two more lives, I would pledge myself seventy-two more times to JC.
If equal affection cannot be, let the more loving one be me.
—W. H. AUDEN, “THE MORE LOVING ONE”
SIX
ANDREW
Was Honesty a Choice?
MY DAUGHTER, SHEHERZAD, BROUGHT HIM OVER ONE EVENING after school in 2009 when they were fifteen. “Meet my new GBF [gay best friend], Mom.” And before I had time to look up, “Khuda hafiz, we are going to play video games in my room. Oh, and we are starving.” As they flew into her room, Andrew doubled back. “Hi, Azra,” he said. “Thanks for having me. I am excited to try the famous Pakistani food everyone talks about.” He was the polite one, always. I will let Sheher and Andrew’s sister Kat, older than him by two years, tell his story in their words.
KAT
In April 2016, Andrew started getting weak in his right arm. Couldn’t do push-ups suddenly. Dad recommended a chiropractor, who told Andrew it was a pinched nerve. He advised various exercises. No benefit. In the last week of April, we went upstate for a family friend’s birthday. Andrew was self-medicating with old opioids. He took Percocet, which did not help. We finally decided to go to the local ER. He was thoroughly examined, told once again that he had a pinched nerve, given stronger pain meds. The next morning, back home in Brooklyn, he was dizzy and could not get out of bed. Our mom and grandma were returning from vacation in Europe. I called my uncle, who is a pediatrician. He asked us to take him to the ER. My dad drove him. He was in the ER all day.
It was a Sunday, and the MRI machine was backed up. By 8:00 p.m., I was informed that the technician had left for the day and it would have to wait ’til morning, so they admitted him. He developed urinary retention. A catheter was inserted. I was on my way to the hospital the next morning and called him once I got off the train. I still remember that moment. I was on Thirty-Fourth Street. The doctors had just come in. Andrew put me on the speaker. The doctors said they were not specialists, but there was a large tumor in his spinal cord and he would be sent to the specialists, who would decide what to do. This was now Monday morning. They transferred him to the neurosurgical team. The tumor board apparently met and decided to take the tumor out. We called Mom, who was getting on a flight back home from a cruise in the Baltics. It was just Andrew and me. Mom was in hysterics the whole flight home, with Grandma trying to calm her down. They came straight from the airport to the hospital. He was operated on Wednesday, a seven-hour surgery. It was a nine-centimeter tumor. His surgeon was very clear. We appreciated and valued him, his apparent honesty, his friendly demeanor. His aura was trustworthy. Closer to midnight, he came out and said the surgery was very successful and he had taken out most of the tumor.
No pathology yet.
SHEHER
Rebecca and Andrew were friends since middle school. I introduced my best friend, Charles, to Andrew in 2009, and Rebecca joined the group in 2012. Andrew was spending a year abroad in Paris from 2014 through 2015. He lived in a dorm with
a great view, had a private bathroom. He had made a set of wonderful friends. Rebecca and I visited him, and he took us to underground bars and the hippest restaurants and introduced us to his friends. We had the best time, going out dancing, clubbing, but some nights, we just stayed home, talking.
One incident is stuck in my head. It was our last night. We came back at 3:00 and had to leave for our flight at 5:00. Andrew asked Rebecca, “Can you do this one dish before going to bed?” She refused. He flared up, and he and Rebecca had a shouting match, calling each other entitled. But then it was over, and Andrew was the same loving self. He doted on Rebecca. He could be stubborn, obstinate, but fiercely protective of all his friends.
KAT
Two days after the surgery, they said it was a glioma, but they were not entirely sure yet. Then they said it was a grade 4 glioblastoma. My grandmother and I researched glioblastomas and found out how fatal they were. Mom and Dad did not even look. They could not. At New York General, he had some of the most painful experiences. He was paralyzed. He lost control of his bowels and bladder. He had to be disimpacted manually. He said it was the worst pain imaginable. They sent him to rehabilitation. He had to learn to walk again.
The doctors were very positive at this stage and said he was really doing well. Dr. C. wanted to do radiation and chemo separately, because simultaneously giving both could potentially cause too much inflammation, which would lead to other issues.
SHEHER
Six of us had a group chat. Andrew texted us. He started by saying, “Guys, I have a pinched nerve.” Then, he texted, “Oh, it’s some neuromuscular thing.” And finally, “It’s cancer.” But he made it sound like everything was under control, even as he told us the diagnosis. He was very positive all along. I went to see him in the ICU before he had the surgery. He was already paralyzed, he could not move, but was very positive. He was more concerned about how Charles and I were doing. He was calm and matter-of-fact. “They have to do surgery and then radiation therapy, and chemo, but first I have to learn how to walk again after the surgery.”
KAT
We sought a second opinion at another hospital. They said to give both chemo and radiation at the same time and deal with complications later. Andrew felt more comfortable at first. The doctors there were more hopeful and exhibited optimism. They started radiation. He did PT. Radiation was targeted to the regional spine, and the same area was repeatedly scanned to look for any recurrence. Afterward, my grandma felt that was negligent, that they took years away from him by not scanning his brain and spine routinely. Anyway, he was finally done with radiation.
He was so happy he was getting back on his feet. We were even able to go snowboarding that winter; after such an invasive spinal surgery, it wasn’t clear if he could walk again. But when we tried to go a second time that winter, he couldn’t. He started to get weak. He started getting really awful headaches. Doctors said maybe he had a sinus infection. It was the most ridiculous thing. They gave him antibiotics. He deteriorated very quickly, had to be rushed to the ER; he was throwing up nonstop. He looked totally green and was shaking. He spent another full day in the ER. They did a CT scan to see if there was bleeding. There was fluid built up that blocked off the ventricles. They did a full-body MRI and saw tumors all over the spine and all over his brain. Mom and I found out first in the ER. We were so terrified of sharing this news with him; thankfully, the doctors told him. Andrew was so stoic. All he said was, “That sucks,” and then, “But what’s your plan for fixing this?” They did another surgery and put in a shunt. They put him on high doses of steroids.
Dr. C. came to the ICU postsurgery. She was despondent and sorry and grim. She apologized a lot. I am not sure whether it was because she should have done a full-body scan or because she could not do anything to help now. She was very honest and told us that even though there were options, Andrew’s chances of response were low and lower.
Andrew and my mom hated her being so honest. They decided to switch to the second hospital. He got assigned to the doctor who had done his second consultation. Dr. T. got along very well with Andrew and Mom. Dr. T. was very optimistic and said there were any number of experimental trials they could offer. Andrew would get sassy with Dr. T., and they would have a great time at every appointment, laughing and making jokes.
SHEHER
I first met Andrew in late winter 2009. Andrew had parties called the Slootsky Fest. His mom was very protective and insisted that instead of going out, he should invite all his friends over. She would be upstairs, and the kids partied in the basement. It was dark. Andrew was playing a band called Crystal Castles. I walked in, went straight to the iPod, and changed it to Mindless Self Indulgence. A voice in the dark yelled, “Why did you do that?” It was Andrew. The rest is history. The boldness of each struck the other, united and bonded us. I was a regular at the Slootsky Fest after that, and he was over at my place the rest of the time.
KAT
Andrew badly wanted to study abroad. Growing up in Brooklyn and staying in New York City for college, he longed to get out for a bit. Andrew almost always got what he wanted. He studied French all through school; Paris was the obvious choice for him. We traveled there as a family a couple of summers prior, and he thought it’d be a great place for a semester abroad. He left in late August of 2014. I wasn’t really concerned about his experience there, since Andrew makes the most of everything instantly, easily making friends. My mom, of course, still needed to call as often as possible for her own peace of mind. She missed him. I did, too, but for me, it felt more natural. Sometimes when I get really sad now, I pretend that he’s just living in Paris. It helps.
While in Paris, Andrew studied French and film. He was pretty much fluent after his time there. He always made fun of my pronunciations when I attempted to speak my very limited French. When he was admitted to the hospital for his cancer, a number of the patient care technicians were from French-speaking countries, and it was such a joy seeing him easily communicate with them in French. They had their own secret thing going on; it made anyone in the room smile. Mentally, Andrew was all there until the very end. One of the technicians, who was originally from Senegal, would always come find Andrew when he was admitted, even if Andrew was not assigned to his care—just to have a chat and see how he was doing. The technician stopped by on Andrew’s last day and attempted to have a chat in French, but it proved to be difficult, not because of Andrew’s loss for words but the morphine he was given made his tongue really heavy, and having a conversation was difficult. I remember the technician getting really emotional and leaving the room, which at the moment I couldn’t understand and was angry about, but I can see more clearly why he did that now. Andrew’s disease deeply affected him even though he dealt with terminal cancer patients every day. Andrew was different. They had a bond. He was one of the hospital staff members who came to the funeral. It meant a lot.
SHEHER
I remember a day in Berlin. We were trying to decide what to do. I wanted to go to the aquarium; Charles and Rebecca refused. They wanted to go shopping instead, but Andrew took me. We went into a room with insects, where ants were falling on our heads. We were screaming, running around. It was the best day I had on that trip. Andrew always paired up with me, and Rebecca with Charles, whenever there was a conflict in our plans. We would joke that people assumed he was my boyfriend. It had two advantages: boys didn’t hit on me, and sweet Andrew carried my shopping bags. Besides, he was my designated fashion adviser. If he couldn’t come, I sent him photos before buying anything.
KAT
Andrew mostly went to class, partied, and explored Paris with his newly formed group of friends. He interned at the Mary Katrantzou showroom during Paris Fashion Week. Since he was trilingual, he was able to communicate with their many Russian clients and translate Russian to French. He collaborated on a documentary film he directed with a friend from his program. The film documented Fashion Week through the eyes of their friend Yu attending some of the
shows. Shopping was a favorite pastime. He was always on the hunt for something special. He got himself some classics thrifted in the Parisian boutiques.
SHEHER
When I first met him, Andrew wasn’t into fashion. He dressed like a regular high school gay boy. In college, he developed a real sense of style. We were going to start a PR agency together. We used to throw big warehouse parties where kids could drink and dance. Both of us liked to dress well in college and executed the parties together. He was very artistic, always had a strong vision for things. Before I bought any bags, shoes, my statement pieces, I always got his approval first. He took great care to put together what he was going to wear. Kat is a photographer. He styled clothing for her. He loved Prada, Dries Van Noten, Kenzo. Shoes and clothing both. He also looked for high-end obscure brands. He played with silhouettes, shadows. Even now when I dress to go out, I think of what Andrew would say. Sheher, take that off right now. Or would he approve? He was really into music. Just before the last time he went into the hospital, he demanded to live alone on Thirty-Ninth and Park in his grandma’s apartment. He got this program called Ableton, which DJs use. He created a song. Rap, hip-hop, dance music, he loved it all. We argued a lot about who would play music at parties. Andrew would fight us but also protected all his friends with his life.
KAT
My mom and I went to visit him for his twenty-first birthday in December. We flew out to Paris and got an Airbnb near the history museum. Andrew abandoned his dorm to stay with us. We explored the city he now knew so well, guiding us around on bikes by memory. Then we rented a car and drove to the French Alps; we snowboarded, and our mom skied at Val d’Isère. It was such an amazing experience skiing in the Alps—vast open trails with endless peaks covered in snow every which way you looked. Andrew and I loved snowboarding, going as fast as we could, each trying to be the first one down, following closely on the other’s tail. He would make playlists for us to sync up and listen to while flying down the mountain. Our mom always worried that we were going too fast, but we were having the most amazing time.