by Azra Raza
SHEHER
It was October of 2016. Andrew was much better. He was going out again, partying some. Mom, you asked me if one of my friends could video your keynote speech at the Development of Literacy gala where you were to be honored. Andrew jumped at the opportunity. He was so excited, went and rented the equipment, he rehearsed how to use the remote microphone. Sam, Andrew, Charles, and I arrived at Cipriani before the gala to scout the grand ballroom. Andrew set up his equipment and fitted you with the mic. It was a glamorous evening, and we had a blast, sharing drinks and jokes, dancing and living it up. He filmed you with great care and concentration. He never forgave himself for the sound. It was the one mistake he made; he forgot to turn the mic on when he fitted you.
KAT
Andrew was so much better. He was independent again. He went by himself to LA, then for three weeks to Berlin. He was on chemotherapy and then lots of clinical trials in sequence. In Berlin, he went to the hospital to get the blood work every week, which then had to be sent to Dr. T. Andrew was annoyed about spending a whole day at the hospital in Berlin. While in Berlin, he started getting weak again in the final days of his trip. He had an episode where he unexpectedly lost control of his bowels and was deeply embarrassed, but the people he was with were very nice about it. He was able to laugh it off. He had a way of making everyone feel better. In Berlin, while we were FaceTiming one day, I noticed that his sharp and chiseled face appeared bloated. We later realized it was due to the steroids he was on. He discovered the term for this condition was moon face; he was pretty upset about it but would always tell people that his face would go back to normal once he stopped taking the steroids. Later, his eyesight started to go, and in a way, it was a blessing, because he never really saw how drastically his appearance changed.
SHEHER
Andrew was very frustrated because his mom was very protective of him, very possessive, but he knew he could not be alone anymore. His close friends visited constantly, accompanied him to his appointments, sat with him in waiting rooms, tried to help as he threw up from chemo and developed the worst possible raw ulcers in his throat after the radiation. It was really awful to see him suffer so much. He could not eat much of anything; he could not swallow. Through the worst nightmarish times, Andrew never complained. He was the one asking all of us about our lives, always turning the conversation away from him, always cheerful, never complained. How is that possible, Mom? He was so sick. We could see it.
KAT
In late April or May, Mom and I were with him when he suddenly started talking gibberish. He had gone for a routine radiation treatment when this happened. They sent him for an emergency MRI, which showed a bleed in his head. Everyone thought he was going to die that night. They asked him to sign a proxy and to decide on a DNR. That was the night my parents finally realized he was not going to make it. He still woke up and lived another two months. When he woke up, he thought he was in Canada. Temporary lapse only. He rapidly returned to being himself.
This very young radiologist involved in Andrew’s care was honest about how bad things were, but at least he was optimistic in his manner. He gave Andrew the choice to go ahead with the radiation or refuse it, calling himself the firefighter, putting out the immediate flame but not solving the overarching issue. He told Andrew frankly that it could help some of the symptoms but not do much for his survival. During that discussion, Andrew was very matter-of-fact: “Well, I don’t want to die, so we’ve got to do the radiation.” So they kept doing it until they couldn’t. He was then sent to rehab because he had to try to get “stronger.” At this point, within a month’s time, he was quadriplegic. The insurance approved rehab because he had to learn how to exist in his current state, and my mom had to learn how to care for him. However, the rehab facility was nervous to have him because they were not equipped for handling him.
SHEHER
I called you that night, Mom. Andrew started babbling in the radiation department. They did an emergency MRI and found a bleed in his head. Andrew’s mother, Alena, asked me to call you and ask you to help. Everyone felt like this was it. He was dying. We were all with Andrew, taking turns going to the waiting room and crying, then we would panic and rush back to be with him. I called you at 1:00 a.m. and cried hysterically, begging you to do something to help him. It was so unbearable. I was really mad for once. I yelled at you, saying, “How is it possible that his mother survived breast cancer and Andrew is dying at twenty-three? How is this happening?”
I am sorry, Mom, but it was too much. The pain, his face, the fact that he was paralyzed. He could not do a single thing he liked doing. He could not even play video games. He was blind. I heard all my life that you and Dad helped cancer patients. You did not help Andrew.
KAT
The last week of August would be his last week of life, although we didn’t know it yet. He could not see. He could not move at all, could not urinate or move his bowels. Next morning, he choked and stopped breathing. Mom responded quickly, a code was called, he was intubated and placed on a respirator. He was moved to the ICU. They weren’t sure if his lungs were working on their own or not. They kept the tube down for twenty-four hours. My family was really nervous about them keeping the tube in for too long; they kept insisting on removing it. My grandmother, who is also a doctor, kept insisting they remove it. He was very frustrated, because mentally, he was all there. Then came a final blow. They told him he could not eat again, as his swallowing was gone. They offered a swallow test. Andrew took this test very seriously; he was very nervous and wanted to pass. Of course, he failed. He was so disappointed. He thought of it like a college exam: if he tried harder, he could do better the next time and possibly pass. He begged to be given a second chance. Knowing that the result would be the same, the hospital staff let him take the test again the following day. He failed again. That was when the doctors sat my parents and me down and suggested hospice care. This came as a total shock for my parents.
After the failed test, my grandmother and uncle insisted that if he could not swallow, we had to ask them to put in a feeding tube. One of the fellows who used to come on daily rounds was very honest and discouraged us from it, strongly. He said he had another patient where they put in a feeding tube and it kept getting infected and was very painful. The medical team finally addressed the quality-of-life issue. Before that, it was all about “We will just keep fighting this disease.” Then all of a sudden, they switched to “Let’s do nothing.”
The silver lining was that we could potentially do hospice at home. Even Andrew was happy at the prospect of being home. He always put up a brave front, especially for my mom’s sake, and said to her, “Maybe they can’t do anything for me now, but after a while, they are sure to have something.” He never gave up. He could not.
My therapist recommended a really good book—Atul Gawande’s Being Mortal—about modern medicine and how the medical field does not really know how to address the quality-of-life issues. Doctors don’t know what to do when there is nothing more to do medically. The book helped me prepare for the hospice conversation. Hospice has a general negative association in our society; thanks to this book, I now understand how valuable hospice is. It helped me decide against the feeding tube. My uncle, the pediatrician, also insisted that we put in the feeding tube, and when I refused, he asked me pointedly, “Don’t you want Andrew to live?” I said, “Of course I do, but not like this. The feeding tube will do nothing for him.”
SHEHER
Some of our friends couldn’t come to visit Andrew. For one thing, we didn’t tell everyone just how bad things had become. But mainly it was because they couldn’t face it. I talked to many of them, tried to tell them it would mean so much to Andrew. Andrew needed us all. He needed for us to be there with him. He always acted normal with us. On a few days, he was frustrated, upset; otherwise, we played music, played games, talked. His speech and hearing were fine until the end. Charles, Rebecca, and I were all working at the time, but we spent all
the remaining hours we could being with him. The one time I saw him become extremely frustrated was with that stupid swallow test. Andrew became fixated on passing it, because he knew that literally his life depended on it. He looked so innocent, trying to succeed, but his mouth and tongue just refused to cooperate. His eyes, they reflected his torment briefly, and then he was fine again, even welcoming hospice care as a relief, to get out of the hospital and go home. He acted like it would be just for a few days.
KAT
In the final four months, Dr. T. did not come even once to visit Andrew. I was the one desperately researching possible trials. The hospital did not help us at all. They dropped the ball. It was a full-time job to do all that research. In the final month or two, I found out that they had never even done a genetic profile on his tumor.
People were not as compassionate as they should have been. I found one trial that required a blood test and a signed authorization from Andrew. He was in the rehab at his first hospital. Can you believe that it was impossible to get blood drawn there and get it to his second hospital? The bureaucracy of it all is so stupid when it has to do with human life. Most of the time, it was all about paperwork.
But then there were some amazing people we also met. The technician who would stop by and chat in French. John, Andrew’s physical therapist, was so charming, sweet, and attentive to Andrew. When Andrew was sent back to the second hospital, John stopped by on his days off to hang out with Andrew and the posse of friends in the ICU during Andrew’s last week. Another physical therapy assistant would come regularly to hang out with him. When I first met her, I assumed it was just one of his friends I hadn’t previously met, when in fact they had just met a few days prior and were getting on as if they’d known each other for years.
The evening he died, we all met at a bar in Brooklyn to celebrate his life and remember him. A lot of the caregivers Andrew had met along the way showed up that evening and at the funeral a few days later. A therapist reached out wanting to do Cycle for Survival in Andrew’s name. The little things people did were so touching.
SHEHER
In the hospital, I had a very upsetting evening with Andrew. He had relapsed, and there were metastases all over the brain and spinal cord. He had been in the hospital since May. Then he was sent to a second, pseudo–rehab center. He was getting physical therapy, people moved his arms and legs. He was mostly blind now and could only move one hand partially. He had several wisdom teeth taken out. He said it was the most painful thing, more than chemo. It was a week before he died. I was alone with him. I had just finished feeding him. He had to use a water pick to clean his mouth and get the food out of the gaping holes that were left in place of the wisdom teeth. Food would get stuck in those sockets. He was not allowed to use a toothbrush because his whole mouth was completely raw. He asked me to help. I filled the pick with water and handed it to him. He kept dropping it; he was too weak to hold it. I kept trying to grab it from him, saying, “Andrew, let me do it.” He got increasingly frustrated and finally yelled at me, “Please, Sheher! Can you just let me do this one thing for myself?” He tried so hard until that point to appear strong, as if he had no pain. In that moment, I could see the minute-by-minute agony he was going through more clearly than ever before. I waited until someone came to relieve me and left to bawl my eyes out. I sat outside and just cried and cried.
KAT
On the last day, there were forty or fifty people in and out of ICU. The hospital sent over a musical therapist who would stop by and have little jam sessions with us. Every person in the room got an instrument, and Andrew would be the conductor. That whole week, he had not eaten. There was the end-of-life team to manage the pain, giving morphine and making sure he had some relief. They let him break the rules: “You can eat whatever you want. But remember, you can choke.” He needed to make a decision about whether he wanted to be intubated if he choked again. I was with him that evening, when the choice was presented to him, and I stayed the night. It was a quiet night; we fell asleep listening to Arcade Fire’s new album. My dad stayed with him the next night, and it was horrible, and they were scared he wouldn’t make it ’til morning. I remember my mom and me rushing to the ICU that morning, hoping to make it in time. That morning, before my mom and I got there, Andrew decided on DNR. I think it was easier for him to say it out loud without my mom and me present. He was alone with our dad. Andrew was always so stoic when my mom and I were there. It’s my theory that he was protecting us, and by protecting us, he was also protecting himself from the truth.
SHEHER
He was so gaunt and so swollen at the same time. His body was wasted, but his face was puffy because he was pumped full of steroids. The shunt was draining fluid from his brain. His whole body was unrecognizable. He loved Brazilian jujitsu. He had lost his left arm soon after the diagnosis, but now his whole body was wasted. The fecal impaction was the worst; someone had to relieve him by hand. He did not want to ever go through that again. Or the spinal surgery. He said he would rather die.
KAT
They took him off all machines and put him on a morphine drip. I kept pressing the button for him even though he kept telling me he wasn’t in pain. I later was told that the button was giving him a tiny amount more, and just the prescribed amount, and it was pretty insignificant, but by pressing the button, I felt like I was doing something in this excruciatingly helpless situation. He wanted to have Coca-Cola; Andrew loved a fresh, cold Mexican Coke in a glass bottle. On a little sponge, I gave him a tiny bit to taste. A few hours later, he developed strange, noisy, gargled breathing. I felt guilty that it was the Coke, and my boyfriend, Ed, kept reassuring me that it wasn’t and that I didn’t do anything wrong by giving Andrew a taste. As he got tired, he said to everyone in the room, “Please don’t leave, just hang out. Don’t mind me, I will sleep for a bit. Just don’t watch me while I sleep.” From ten to midnight, he got into a deep breathing and sleeping pattern. The whole hospice conversation had been for nothing. There was no way he was getting out of the hospital.
SHEHER
I had made a video in which he looks high because he was so sick. It was from the time when one of the tumors in his brain had hemorrhaged and he was making no sense. He looked so cute—innocent and bewildered. I have the video but cannot watch it. Andrew was very close to his mom; they yelled at each other a lot. He, his sister, and his mom, went on annual trips together. He adored Kat. That last night, we were all with him for almost fourteen hours. He did not want to close his eyes. He somehow knew that when he did, he would never open them again. He kept telling us to stay. Until the end, he was making total sense.
KAT
That night, after everyone left at midnight, I was sitting on the bed with him and holding his hand. Mom and her friend were sitting on the chair. I was talking about something silly, not even looking at Andrew. Mom’s friend is a nurse, and she noticed that his breathing got slower and slower. We called the staff. They said Andrew was still with us; we could talk to him. We called my dad, who was in the waiting room. I felt like I had to tell Andrew it was okay for him to let go, even though I felt it was not okay. How could I tell him that? Suddenly, his hand went limp in my palm. I could not see him as I was sitting right next to him in bed, so I got up to look at him. It was the worst sight I’ve ever seen. Andrew’s face had just fallen. His mouth open. I was devastated. I left the room instantly. He was gone.
SHEHER
We had just reached home after being with Andrew for fourteen hours when I got Kat’s text. Andrew was no more. Inna lillah e wa inna ilayhe rajeoun. From him we came, and to him we shall return.
KAT
My dad and mom kept going back in to see him. I got frustrated, not understanding. “Why do you keep going in? There is only a dead body in there now. That’s not Andrew anymore!” For some crazy reason, my dad became obsessed with Andrew’s open mouth. What if it froze in that position as rigor mortis set in? He finally located some tape and managed to close
Andrew’s mouth and support his lifeless jaw.
THERE WAS NOTHING else left to do for Andrew now. It was not even half an hour since he died, but his father’s face had aged years. Your child’s dead body can do strange things.
No, no, no life?
Why should a dog, a horse, a rat have life,
And thou no breath at all? Oh, thou’lt come no more,
Never, never, never, never, never.
—SHAKESPEARE, KING LEAR, ACT 5, SCENE 3
A ghazal by Mirza Ghalib provides Urdu poetry with a new language for the elegiac; it articulates the anger of loss without in any way diminishing the intensity of passion. It addresses the dead son with the necessity of reproach. The poet declares that it was imperative that the absent should see his path again, and then asks a poignant question—why did you go alone?—and proceeds to state, “So stay alone, until some other day!” The couplet pierces because its sorrow is almost infantile in that it expresses the raw irritability of grief: there is no give-and-take in death; there is only a taking away.
Laazim tha kay dekho mera rasta koi din aur