The End of Your Life Book Club

by Will Schwalbe

  It would be one of many such hospital stays, each one frightening for a variety of reasons. When you’re sick, just about the last place you want to be is in a hospital. We were constantly worried that Mom would pick up an infection there, and several times she did: a staph infection a few times and a case of C. diff., a horrible bacterial infection (full name: Clostridium difficile) that would recur.

  When Mom was in the hospital, Dad would stay by her bedside as long as visiting hours allowed. Doug and I (and Nina when she was in town) would visit as much as possible, with Mom always suggesting at some point that we take Dad out for a burger to give him a break from the place. Over lunch, we’d chat breezily with Dad about our work and lives and try to figure out how many days Mom would need to remain in the hospital this time around. Following Dr. O’Reilly’s lead and our own inclination, we never went near a discussion of a timetable beyond that: how many more days, or weeks, or months, or years we might have with Mom—not just because it was impossible to know but because it was too painful.

  I remember this stay well because Mom was fixated on getting out by a particular date, and she grew more and more anxious as that date approached.

  On May 16, Marymount Manhattan College, where Mom had been a trustee, was going to be giving her an honorary doctorate of laws, alongside the religious historian Elaine Pagels and the philanthropist Theresa Lang. It would be at the Marymount commencement ceremony at Avery Fisher Hall in Lincoln Center. Mom would be introduced by a refugee whom she’d helped attend Marymount; she was then to give a short speech. Mom was tremendously moved by this honor and desperate to be there.

  I’d been anxious about the birthday party, but I was even more anxious about the honorary degree. Once again, however, I needn’t have worried. Mom was, in her own words, incredibly lucky—again. She was out of the hospital in time. Nina had been home with Mom for a week and was not just a great help on things medical but gave a huge boost to her spirits. So now, though weak and hovering around one hundred pounds, Mom felt strong enough to stand up in Avery Fisher Hall and speak.

  I’ve been many times to this enormous concert hall, but always to hear one orchestra or another. Now the auditorium was packed with graduating students, in cap and gown, and their families, draped with cameras. Mom looked tiny behind the podium on the vast, brightly lit stage. She started her speech by calling Marymount her favorite institution of higher learning in the United States, which got a big whoop from the audience, who knew that she’d held positions at Harvard and Radcliffe. She then told the story of the boy who had lost a leg and of the Bosnian family who insisted on walking ahead of her through the field of land mines to get to the polling station. And also an anecdote I hadn’t heard before—about a boy in a refugee camp who begged her to start a school there because, he said, “boys get in trouble when we have nothing to do all day.”

  Most on Mom’s mind was the upcoming presidential election in the United States. She ended her remarks with a story of a pamphlet that she’d been handed when she was visiting an African country where people were able to vote freely for the first time. The pamphlet was called The Ten Commandments for Voters, and she read aloud to the graduates just a few of them. There she was, almost disappearing behind the podium. Her hair looked thinner, but the robes she wore hid just how much weight she’d lost. Her voice, however, was loud and clear. She read:

  1. You have nothing to fear. Remember that your vote is secret. Only you and your God know how you vote.

  2. People who promise things that they never give are like clouds and wind that bring no rain: do not be misled by promises.

  3. Your vote is your power: use it to make a difference to your life and your country.

  Most of the students were, like her, passionate supporters of Obama. They knew just what she was talking about and cheered.

  Then she continued: “I have learned from the refugees I have met over the last eighteen years to have hope for the future—and that is what has helped me through my life, and I know that has been important to the Class of 2008. I wish you all that for yourselves, and so much more.”

  I couldn’t stop crying, and I was surrounded by a thousand proud parents, most of whom were also crying, but with tears of joy to see their children graduate. I thought about Mom’s instructions for the acknowledgment cards we would need to print after her death, and I looked around at the rows of our family and friends who had come to support Mom, and I knew that before too long they would be sending me condolence notes and letters, and I would be sending them back these printed cards—personalized, of course, just as Mom had instructed. In blue ink, not black.

  What’s odd about commencement is that so many people think of it as the end of something, the end of high school or college—but that’s not what the word means at all. It means the beginning, the start of something new.

  Wherever You Go, There You Are

  The wig reappeared in August 2008. Mom hadn’t worn it at all, as she still had enough of her own hair not to feel too self-conscious in public, but now that she was having more chemo, she thought she’d try to improve the wig in case she lost more hair. Mom’s yoga teacher, who had become her friend and guide in various holistic therapies like biofeedback and meditation, knew someone who could make the wig better, make the color a little truer to Mom’s, and make it less big.

  We’d spent the early part of the summer reading various books about current affairs, the upcoming presidential elections, and Obama, whom Mom loved and respected more each day. But for our August book club meeting, Mom wanted a change of pace, so we decided to discuss Jon Kabat-Zinn’s books on mindfulness and meditation. The first Kabat-Zinn book we’d read was Full Catastrophe Living, which details how meditating and finding ways to handle the stress in one’s life can aid in healing. Kabat-Zinn has a Ph.D. in molecular biology from MIT and is the founder of the Stress Reduction Clinic at University of Massachusetts Medical School. The book, originally published in 1990, cites studies he and other scientists had done to show the ways the mind can help heal the body. We now read his 1994 book, Wherever You Go, There You Are, which is more of a guide to meditation and mindfulness, of being present in your life, not just to reduce stress and aid in healing but to live more fully every minute. “Mindfulness means paying attention in a particular way: on purpose, in the present moment, and nonjudgmentally,” writes Kabat-Zinn. “This kind of attention nurtures greater awareness, clarity, and acceptance of present-moment reality.”

  “You should do yoga and maybe even try meditation. I think it really makes a difference,” Mom said to me when we met.

  “I know,” I replied. “But I don’t have time.” As soon as I said it, I realized how ridiculous it sounded. Compared to Mom, I had a lot of time. “Still, just reading things like this helps, I think,” I added hopefully. “Maybe reading this book is a form of meditation.”

  “Maybe,” said Mom. “But it’s certainly not the same as yoga.”

  There was a passage in Kabat-Zinn’s most recent book, Coming to Our Senses, that I’d marked to show Mom. Unfortunately, I couldn’t remember what I’d marked, why, or where I’d put the book. It was a book I’d helped edit, so it was particularly irritating not to be able to get my hands on my copy. I was sure I would eventually find it under one of the piles of papers scattered around our apartment. But I was just too wrecked to search for it. Which perhaps proved Mom’s point.

  “You look exhausted,” Mom would say to me whenever I saw her. I’m sure I did. I had decided that my new venture should be a cooking website. So I was racing around town from meeting to meeting, usually soaked in sweat due to the heat and my nerves, trying, with two partners, to get the website designed and funded and built, rushing in and out of a shared fourth-floor-walk-up office that I’d rented from friends, pausing just long enough in their wine shop below to have a quick chat and to grab a bottle to take home or to a dinner. I spoke to my brother and sister about our busy lives: much as we wanted to, we all felt that
if we slowed down dramatically to spend more time with Mom, we would communicate to her that we thought she was dying very soon. And it was also clear that Mom didn’t want us hovering. While she was relatively well, she had people to see and things to do.

  THE EARLY AUTUMN passed with many good days for Mom, but also plenty of not-so-good ones. It was now almost a full year since she’d been diagnosed. Fever brought her to the hospital several more times in quick succession, and again she sometimes had to stay over. It was during a hospital overnight in September 2008 that we saw, for the first time, Mom experiencing what even she would describe as pain. It was terrible to watch. She bit her lower lip, closed her eyes, and doubled over. When the spasm subsided, Mom asked for a painkiller. Up to that day, she hadn’t taken anything stronger than an Advil. They gave her a Percocet, and that seemed to do the trick.

  “I feel like such a whiner and complainer,” Mom said as she took the pill.

  I was there with my father, and we shouldn’t have, but we both burst out laughing. Mom looked annoyed.

  “Mom. You have cancer. You can ask for a painkiller every now and then. It’s okay.”

  “I know that,” Mom said, a little sharply. “I just haven’t needed them.” She paused. “I’ve also been thinking a lot about that first time Rodger and I talked and about how much pain he said I’d be in.” She and Rodger had chatted many times since that conversation and had seen each other on one of his visits to the city. Rodger had moved to Denver years before, leaving behind his best friends and busy life in New York, to take a challenging job running a gay rights foundation, after nursing both a brother with AIDS and the friend with pancreatic cancer through the last stages of their illnesses. Neither Mom nor I ever told him how much that initial call had upset her, and both of our friendships with him had continued undiminished and unabated. “I think that scary conversation with Rodger was actually really a blessing and maybe something he did on purpose,” she continued. “No matter how uncomfortable I am, I keep thinking, Well, it’s not nearly as bad as Rodger said it would be. And that’s been a real gift. But I’m worried about Rodger—he’s in terrible pain from his back problem, and I don’t think people realize what it’s like for him to be in pain all the time, not to have good days and not-so-good days, like I have, but constant pain.”

  When we went to Dr. O’Reilly for Mom’s next checkup, we got a full report from her last hospital stay. Mom’s colon was inflamed—that was almost certainly thanks to C. diff., the tough-to-treat bacteria she’d picked up during one of the previous hospital overnights. The pain was from the infection, not the cancer. Mom was also to take a second break from chemo before they started a new treatment—the most recent course of chemo had been too hard to tolerate and not as effective as they had hoped.

  As for the tumors, they were still smaller than a year ago when Mom had her first scan. While Dr. O’Reilly spoke, I scribbled down notes and asked questions. I did this every time. If I didn’t write down everything, I’d remember nothing.

  Dr. O’Reilly then had a topic she wanted to approach gingerly. She sat down and asked Mom how she was dealing with all the needle sticks. Mom had started to look like an IV drug user, with all the track marks up and down her arms. The endless blood testing and chemo had taken their toll, and the search for a usable vein had become an increasingly brutal game of hunt and peck. Dr. O’Reilly said she wanted to implant a port under Mom’s skin, just at the top of her breastbone. This would make everything easier and allow for a new treatment, during which Mom would be hooked up to a little bottle, like a water bottle, but full of chemo—she’d carry it around for a few days until it was empty. The process is called a Baxter infusion; they would teach her and me how to hook it up and unhook it, though Mom could always go to the clinic and have it done there.

  She felt Mom’s best option was to try 5-FU, a chemotherapy that’s delivered this way, along with Leucovorin, a kind of folic acid that makes it more effective. She warned of side effects that included the return of the dreaded mouth sores, fatigue, diarrhea, and sensitivity in Mom’s hands and feet. But she thought the side effects would be far less severe than those the first chemo had eventually caused.

  There was literature on it, if we wanted.

  I always love that use of the word literature. So our book club now included information about drugs written by folks at pharmaceutical companies. Mom took the literature, thanked Dr. O’Reilly profusely as always, and started to head out.

  I reminded Mom that she had one more question she wanted to ask.

  “That’s okay, Will,” Mom said.

  Dr. O’Reilly wanted to know what.

  “Don’t bother the doctor with that,” Mom said, now exasperated that I’d ignored her hint.

  “Mom has an important dinner on November twelfth,” I said.

  “It’s the annual dinner of the International Rescue Committee,” Mom said.

  “And she really wants to feel well for it,” I added. “I’ve heard that Ritalin can help. Is that right?”

  I’d done enough drugs in high school—and had enough friends who still did them—to know these things. Ritalin is a form of speed. It calms kids down but increases energy for adults.

  “Yes, that’s a good idea,” said Dr. O’Reilly. “Many patients think it helps. I’ll give you a prescription for it,” she said to Mom. “You may want to try one first on a day where you don’t have something important to do—just to see how you react to it.”

  MOM LIKED THE Ritalin. And she found it had a terrific and unexpected side effect—it helped her read. The day she first tried it, she was tired and uncomfortable and having trouble concentrating. She popped the Ritalin right before she sat down with Thomas Mann’s Joseph and His Brothers, a fifteen-hundred-page book that she’d been attempting to read after a friend gave it to her. Mann spent a decade’s worth of work on the book, on and off, between 1926 and 1942, during which time he also wrote Death in Venice, Tonio Kröger, The Magic Mountain, and Mario and the Magician. With the Ritalin, Mom found herself well into Joseph before she needed to come up for air. I, meanwhile, was still tearing apart my apartment looking for the Kabat-Zinn book I’d misplaced. When Mom finished the Mann, she gave me her copy as our next book club pick. What she didn’t give me was any Ritalin to go with it.

  I TRIED TO read the Mann several times but always gave up. I finally admitted this to Mom.

  “It’s not easy,” she said. “But it’s amazing. It’s like a catalog of every behavior and dilemma you could ever imagine. And it’s quite funny, too.”

  “Really?” I asked. I’m sure I sounded dubious.

  “But did you read the foreword? Because even the translator doesn’t suggest beginning at the beginning. He says you should start about one hundred pages in and then go back to the beginning when you’re done.”

  Everything should have been great for the next few weeks—Mom was on vacation, as it were, from the chemo so that she would be in better shape when she started the newest treatment. But she still kept getting fevers and needing to go to the hospital. Another staph infection had Dad hurrying around their neighborhood on a Friday night, he told us the next day, trying to find some pharmacy that had the six-hundred-dollar antibiotic that could cure it. Fevers tended to pop up after hours, when the Memorial Sloan-Kettering pharmacy was closed.

  Mom was trying to keep up with all her friends, through a barrage of emails and also visits, which she loved and planned her days around. She would time her medicine, and her energy, with someone’s expected arrival. She’d be ready and sitting on her favorite part of the sofa; she’d have some snacks on the table, ice in the ice bowl, coffee or tea during the day, soda and wine in the evening. When the appointed time came, the clock would tick by heavily until her guest arrived. But after a half hour or so, the visitor could see the energy draining from Mom’s body, her face becoming increasingly clenched as she tried to stay focused on the conversation.

  By the end of October, Mom started
to feel better. The new antibiotic was finally working. Dad went with Mom when they installed the port in her chest. I spent the day with her when they gave her the first treatment with it, hooking up the bottle. They showed me how to unclip it once it was empty. I’m not very mechanically inclined, but I was determined to learn how and did.

  That day was a long one with lots of waiting. I had many cups of mocha over nearly eight hours. And we had lots of time to talk. We’d both just read Home, the latest book by Marilynne Robinson, the author of Gilead. Thomas Mann would have to wait, mostly because I’d yet to return to his fifteen-hundred-page book. Home, a retelling of the prodigal son story using many of the same characters from Gilead, presented its own challenges to us. The tale of the prodigal son, both in its original Bible version and the Robinson update, is an unsettling tale for any child to discuss with a parent.

  “The thing about the prodigal son story that’s always bothered me,” I told Mom, “is that the son is welcomed back so enthusiastically because of all the trouble he’s caused, not in spite of it. I mean, what if he’d returned prosperous and well fed, not broke and starving? Would they have given him a party and slayed the fatted calf? I don’t think so.”

  “I think they would have,” Mom said. “The point of the story is that he was lost and then came back. It’s about salvation, not hunger.”