There were other things she needed to talk to me about too. Ever more people were starting to hear that she had cancer, and she wanted to make sure she got to everyone in the right order and with the right message: not curable but treatable. Mom wanted everyone to know that it was too early to hang crepe and that she was determined to fight the cancer. With prayers and a bit of luck, she would have a good long run, she told people. But she also wanted them to know that it wasn’t something that could be zapped and dispensed with; that it was indeed pancreatic cancer, and they shouldn’t expect a miracle, just pray for one. We all spent a fair amount of time explaining to people that no, alas, she wasn’t a candidate for the Whipple, a grueling and brutal operation they do to remove the tumors and much of your pancreas if they think your cancer hasn’t yet spread to other organs. Because with Mom it certainly had spread.
One of my cousins and his wife had written to say, in a way they knew would make her smile, that even though they were “heathens,” they were praying for her. Mom loved this. She said to me—and to them—that she suspected heathen prayers were even more effective than Christian or Jewish or Muslim ones—perhaps because heathens prayed less.
We knew word had begun to get out widely when lots of food started to appear. A delicious roast chicken arrived. Some friends made soup or muffins and dropped them off. One of Mom’s best friends since grade school arranged and paid for a cook to come once a week and serve dinner so Mom could host a small gathering of friends without exhausting herself, or just share a delicious home-cooked meal with Dad if she wasn’t up for visitors.
Several people called me for advice. I understood their dilemma. What does one say to someone who has just been diagnosed with such a dire illness?
Every year pancreatic cancer kills more than 35,000 people in America—it’s the fourth leading cause of cancer death. It gets only 2 percent of the National Cancer Institute’s budget; maybe that’s because it has so few survivors. Most people don’t know they have pancreatic cancer until it has spread, because the symptoms usually come late, often as a result of the cancer affecting other organs, and they are common to many different illnesses. Weight loss, back pain, nausea, and loss of appetite can have hundreds of causes. The yellowing eyes and skin of jaundice is another symptom but is far more likely to be caused by viral hepatitis than anything else, so it’s usually chalked up to that.
After Mom’s diagnosis, I went to the Web to find a picture of the pancreas. It’s a lumpy, cone-shaped gland tucked deep in the abdomen behind the stomach, resting in front of the spine and alongside the small intestine. The pancreas is the gland that makes hormones like insulin and also the enzymes that help us digest food. The bile duct links it to the liver and the gallbladder. Cancer cells easily spread from the pancreas to other parts of the body, hitching a ride on the blood that courses from the pancreas through the lymphatic system.
When it’s not possible to remove the tumors by performing a Whipple operation—and it’s not with about 85 percent of the people who are diagnosed—the only available treatment is various combinations of chemotherapy. This is usually palliative—it addresses the symptoms and helps slow the disease but can’t stop the cancer from spreading.
At the time of Mom’s diagnosis, and at the time of this writing, the type of pancreatic cancer Mom had is almost always fatal, unless it’s caught in time for a Whipple. Fewer than five percent of all people diagnosed with all kinds of pancreatic cancer, including those who have the Whipple, will live five more years. For those, like Mom, who are diagnosed after the cancer has spread, the average life expectancy is three to six months, but that’s just an average. Some people, we were told, are dead within a month; others will live for two years or even longer.
I gave people who didn’t know what to say the best advice I could muster, which was that it was better to say anything rather than pretend that nothing was wrong. My hunch was that Mom would simply appreciate knowing that people were thinking of her. This turned out to be true enough. The messages she received brought her real pleasure, and she shared some with me. One of my oldest friends wrote a letter chronicling our families’ decades of friendship and also inviting Mom to her annual holiday party—or a quiet supper. The sister of Mom’s oldest godchild sent a lovely picture of “paper boats on a river of salt and sand to bear away some of your discomfort.” Others wrote about the effect Mom had had on their lives. I cringed a bit at some of the pre-eulogizing—too much too soon, I thought, too much like being present at your own funeral. Yet those were among the messages she liked the most. And why not? Why not enjoy the pleasure of knowing that you touched others during your life while you still can?
She did, however, confess to a passing irritation with people who wrote or said, “I’m sure you’ll be cured soon.”
People also wanted to share with her their stories of friends and relatives who’d had pancreatic cancer. I grew weary of these tales, but my mother didn’t seem to, always asking questions in case there was something useful she could learn, or perhaps just because she was much more comfortable in the role of the comforter than the comforted. Mom told one friend that she felt deeply selfish about her sense of relief that she would now be thinking only of herself and her family, and not about work or the scores of charities and schools and causes that had previously occupied her. The friend countered that that was hardly selfish, given the circumstances. But then in the next breath, Mom suggested a party for her beloved ninety-three-year-old office mate at the International Rescue Committee, and also volunteered to help plan a mission to Uganda that she couldn’t go on but thought was extremely important.
Meanwhile my mother’s bile duct was swollen shut, because of the pressure from the tumor in her pancreas. So Mom went into the hospital that week to have a stent put in, to ease the jaundice by helping her liver drain through her bile duct, but she simultaneously kept herself busy working her cell phone, organizing the party, the mission, and our lives.
Watching all this unfold, my sister was less and less sure about going ahead with the move to Geneva. The new job would give her the ability to influence policy and help save the lives of children around the world. But she really wanted to stay with Mom, go with her to chemo, and have Mom be able to spend as much time as possible with all her grandchildren. Sally, a nurse by training and now also in public health, was, as always, a calming and practical voice as my sister contemplated scrapping all the plans they had made together. If that was what Nina wanted to do, of course that was what they would do.
Mom would hear none of it.
“I’m going to fight this thing, and Nina can come back as much as she likes, and I’ll spend lots of time in Geneva, but she and Sally and the kids must go.” If Nina and her family stayed, against Mom’s instructions, she would be signaling to Mom that there might only be months left instead of, perhaps, years. Mom relied on my sister for an enormous number of things—including hope. What would it say to Mom about her condition if days away from moving Nina canceled everything? And what about all the plans surrounding the impending move? If the slightest change of timing or itinerary generally drove Mom’s anxiety level to DEFCON 1, then what would this do?
Still, Nina wanted to stay. Was it okay to stay simply because she wanted to do so, even if it upset Mom and increased Mom’s feeling of doom? And what about the job? Was it selfish to go or selfish to stay—or did that word even apply? A self is not; not a self [is not].
“Are you sure you don’t want me stay?” Nina asked Mom.
“Of course, I want you to stay. But I really want you to go,” Mom answered.
“And if I were sick and you had the same choice I have, would you leave or stay?”
“Oh, sweetie, that’s totally different. You have your whole life ahead of you.”
“But you’d stay?” Nina asked.
Mom didn’t answer.
And then Nina called me. “What on earth am I supposed to do with that?”
MOM HAD JUST give
n me A Thousand Splendid Suns, the new book by Khaled Hosseini, author of The Kite Runner. When Mom discovered The Kite Runner, soon after its publication in 2003, she was ecstatic—and made everyone she knew read it. The book and its author fascinated her. Hosseini was born in Kabul in 1965. He spent his early years in school in Afghanistan, but his father, a diplomat, was posted to Paris when he was eleven, so they moved there. After the Soviet invasion in 1979, his family was granted asylum in the United States. He would eventually become a doctor and would write The Kite Runner in the mornings before work. He had almost finished, and then came the September 11, 2001, attack on the World Trade Center, which made him think he should abandon it. But his wife insisted that he continue—she saw the book as his way of putting “a human face on the Afghan people.” Mom felt he had done exactly that; this was the Afghanistan she knew and loved, because it was a book about everyone she’d met there. She no longer needed to try to explain her love of that misunderstood country—she just insisted everyone read The Kite Runner.
Mom and I didn’t exactly agree about The Kite Runner. I liked it a great deal but thought it had too much plot. Did the evilest Taliban guy really need to be a Nazi too? There’s also a key scene involving a slingshot that I had trouble believing. When we disagreed about a book she loved, Mom would just furrow her brow. It wasn’t that she didn’t think you had a right to your opinion—of course you did. It was just that she felt you were missing the main point—you were focused on one thing when you should have been focused on another. It was as if you were critiquing a restaurant based on the decor, while she was talking about the food.
When she first pressed A Thousand Splendid Suns into my hand—we were in New York, standing in her and Dad’s dining room, sun streaming in through the French doors, making for a splendid sun effect right inside their apartment—she told me that she loved it even more than The Kite Runner, because this time Hosseini was focusing on women. It was the women of Afghanistan, my mother believed, who—once they’d been granted access to books and education—would be the salvation of that country. “And there are no Nazis in this one,” she added emphatically, remembering my earlier criticism.
As soon as I finished the book, I went over to Mom and Dad’s apartment to talk with her about it. Dad was still at his office; Mom at home waiting for a conference call. We found ourselves discussing the three kinds of fateful choices that exist in the two books: the ones characters make knowing that they can never be undone; the ones they make thinking they can but learn they can’t; and the ones they make thinking they can’t and only later come to understand, when it’s too late, when “nothing can be undone,” that they could have.
Mom had always taught all of us to examine decisions by reversibility—that is, to hedge our bets. When you couldn’t decide between two things, she suggested you choose the one that allowed you to change course if necessary. Not the road less traveled but the road with the exit ramp. I think that’s why we had all moved, at different times in our lives, to various foreign lands without giving much thought to it. If you stayed at home, you might not get the opportunity to go to that place again. But if you went, you could always come back.
At the same time Mom loaned me A Thousand Splendid Suns, she’d also given us all a much more prosaic work to read: The Etiquette of Illness, a book from 2004 by a social worker and psychotherapist named Susan Halpern, who is herself a cancer survivor. The subtitle is What to Say When You Can’t Find the Words. But it’s really about what to do when you feel scared that doing something, if it turns out to be the wrong thing, might be worse than doing nothing at all. For years, Mom and Dad had been fascinated with the subject of end-of-life care—including palliative medicine, which focuses not just on managing pain but also on helping patients and their families maintain the best possible quality of life throughout the course of an illness. In addition to having a standard will, always kept up-to-date, Mom had made living wills and filled out her “Do Not Resuscitate” paperwork long before she’d had any inkling that she was ill. It’s not that she was obsessed with sickness and death or even particularly worried about either—she said she just didn’t want to leave room for us to argue about her wishes if she wasn’t able to express them.
A Thousand Splendid Suns and Man Gone Down were books Mom had said I must read. The Etiquette of Illness, however, was one she said she wanted me to read. I let it sit for days on my bedside table, untouched. I thought I didn’t need such a book. Common sense would guide me.
One of the many things I love about bound books is their sheer physicality. Electronic books live out of sight and out of mind. But printed books have body, presence. Sure, sometimes they’ll elude you by hiding in improbable places: in a box full of old picture frames, say, or in the laundry basket, wrapped in a sweatshirt. But at other times they’ll confront you, and you’ll literally stumble over some tomes you hadn’t thought about in weeks or years. I often seek electronic books, but they never come after me. They may make me feel, but I can’t feel them. They are all soul with no flesh, no texture, and no weight. They can get in your head but can’t whack you upside it.
As an insomniac, I find what I want to read at three A.M. is very different from what I crave during normal waking hours. So a few sleepless nights later, I found myself giving The Etiquette of Illness a quick glance, after my hand knocked against it and it fell onto the floor when I fumbled for my bedside lamp. Three hours later I looked up. David and I live in an apartment that’s not huge but has a view south, to where the World Trade Center towers used to stand; east to the Brooklyn Bridge; and west across the Hudson, which peeks out from between elegant Richard Meier glass buildings and various squat brick structures that fill the blocks between our place and the water. When I paused in my reading, I saw that it was no longer dark and that the patches of the Hudson River visible from our window were orange with the light from the east. I would finish the book a few hours later, just in time for work. The book had hooked me instantly with one example that made me realize that there is, indeed, an etiquette of illness; that there was no reason I should know it, but also no excuse for not being open to learning it.
Halpern wants the reader to think about the difference between asking “How are you feeling?” and “Do you want me to ask how you’re feeling?” Even if it’s your mother whom you’re questioning, the first approach is more intrusive, insistent, demanding. The second is much gentler and allows the person simply to say no on those days when she’s doing well and doesn’t want to be the “sick person,” or is doing badly but wants a distraction, or has simply answered the question too many times that day to want to answer it again, even to someone as close as a son.
I scribbled down on a scrap of paper a version of that question and two other things I didn’t want to forget from this book and stuck the creased paper in my wallet. Here’s what I wrote:
1. Ask: “Do you want to talk about how you’re feeling?”
2. Don’t ask if there’s anything you can do. Suggest things, or if it’s not intrusive, just do them.
3. You don’t have to talk all the time. Sometimes just being there is enough.
The next morning, I called Mom the minute I awoke.
“Hi, Mom, do you want to talk about how you’re feeling?”
And she did. She’d been feeling better—the stent they’d put in made a huge difference, and her jaundice had almost disappeared. Dad had gone with her for the procedure, and she was very proud of him, as he hadn’t been squeamish in the least about any of it. (He always gets annoyed if people insist on describing operations or illnesses in detail, though I now realize that this is mostly because he just doesn’t think it’s a proper topic for conversation.) Mom’s appetite was somewhat back. But she’d had her first chemo treatment and was getting mouth sores—very irritating. On the other hand, Dr. O’Reilly gave her steroids, and that was helping improve her energy. She was just nervous about how she’d feel when the steroids wore off. She’d been thinking abo
ut my suggestion of a blog—but was even more convinced that it was unseemly for her to write about herself, and that I should write about her from my perspective. So we clunkily titled it Will’s Mary Anne Schwalbe News.
Still, she thought, it would be easier for me if she composed the first post—but in my voice, as if I had written it and not her. She would dictate it to me, and I would type it up. So here is Mom, pretending to be me reporting on her:
Mom started her weekly treatment yesterday as an outpatient at Memorial Sloan-Kettering. She says the people are incredibly nice there and she was impressed with the whole setup.
A lot of people have asked Mom, Dad, Doug, Nina, and me about the best way to keep in touch—which is part of the reason for this blog! I’ll post news when there is news to post, including dates on Mom’s trips to London, Geneva, etc.… So you can check back on the blog as often as you like for any updates.
And, as I’m sure everyone has guessed, email to Mom and regular old snail mail are much better than phone calls. (My father has never been a great fan of the phone.) Of course, depending on her treatments and travels, she may not always be able to reply right away to emails or notes. So please don’t worry if you don’t hear back.
Thanks to everyone for your concern and kind thoughts and words. Mom is really grateful, as are we all.
Of course, she said, I should change or edit the post however I liked. But she did think it important to mention that she was planning to travel, so people wouldn’t think she was on her deathbed quite yet. I didn’t change the post at all. Mom apologized to me several times: “I’m sorry to put you to so much work when you have so much of your own to do.” I tried to explain to her how little work it is to update a blog. She wanted me to promise her I would get some sleep.
The End of Your Life Book Club Page 4