A few months back, I was invited to take part in a program for ABC television called “You Can’t Ask That.” The premise of the show is that there are taboo subjects about which it is difficult to have an open and honest conversation, death being one of them. The producer of the program explained that I would be required to answer a number of questions on camera. She said questions had been sent in from all over the country, and the ten most common had been selected. I wasn’t to know what these were until the day I went into the studio for the filming.
It turned out that the producer of the program herself had a need to talk about death, as she had recently lost her father to cancer, and was struggling to cope. This is so often the case with people I talk to about my situation: they listen for a while, then they tell me their own death story, but always with a vague sense that it is shameful, that the whole sorry business is somehow their fault. In taking part in “You Can’t Ask That,” I wanted to do my bit to change things around, to win back some dignity for the dying, because I don’t think silence serves the interests of any of us.
The questions, as it turned out, were unsurprising. Did I have a bucket list, had I considered suicide, had I become religious, was I scared, was there anything good about dying, did I have any regrets, did I believe in an afterlife, had I changed my priorities in life, was I unhappy or depressed, was I likely to take more risks given that I was dying anyway, what would I miss the most, how would I like to be remembered? These were the same questions I’d been asking myself ever since I was diagnosed with cancer, back in 2005. And my answers haven’t changed since then. They are as follows.
When James Vlahos learned that his father, John, was diagnosed with stage IV lung cancer, he set out to save his dad’s memories by programming them into a chatbot that he could pull up from his phone. The chatbot, nicknamed “Dadbot,” could emulate John in text conversations, bringing up various stories from John’s life. Vlahos wrote about his experience in Wired, and recounts the first time his mother interacted with “Dadbot”:
The Dadbot gives my mom a few other pointers, then writes, “Finally, it is critical that you remember one final thing. Can you guess what it is?”
“Not a clue.”
“I will tell you then. The verb ‘to be’ takes the predicate nominative.”
My mom laughs as she reads this stock grammar lecture of my father’s. “Oh, I’ve heard that a million times,” she writes.
“That’s the spirit.” The Dadbot then asks my mom what she would like to talk about.
“How about your parents’ lives in Greece?” she writes.
I hold my breath, then exhale when the Dadbot successfully transitions. “My mother was born Eleni, or Helen, Katsulakis. She was born in 1904 and orphaned at three years old.”
“Oh, the poor child. Who took care of her?”
“She did have other relatives in the area besides her parents.”
I watch the unfolding conversation with a mixture of nervousness and pride. After a few minutes, the discussion segues to my grandfather’s life in Greece. The Dadbot, knowing that it is talking to my mom and not to someone else, reminds her of a trip that she and my dad took to see my grandfather’s village. “Remember that big barbecue dinner they hosted for us at the taverna?” the Dadbot says.
At Sports Illustrated, Tim Layden tells the story of middle-distance runner Gabriele “Gabe” Grunewald, who discovered in 2009 that she had a very rare form of cancer, adenoid cystic carcinoma (ACC), which is found primarily in the salivary glands and for which there is no standard of care. Then 22, she was on the verge of winning a Big Ten title and about to launch her professional running career. So they removed the tumor and she fought ACC.
“It all marked the beginning of Gabe’s life with cancer, not the end,” writes Layden. Within less than a decade, cancer has come back in different forms — again and again and again. Through it all, Gabe keeps running.
Since that morning in Tempe, cancer had come back three times. First there was thyroid cancer in 2010, just a year after her initial diagnosis. This was an entirely different kind of cancer, which at first confused everybody (but which now seems like a footnote). In the days between those first two cancers, Gabe, now 31, had lived—and run—voraciously. She learned that ACC five-year survival rates are very high (approximately 89%), and she attacked those five years. “Just fit in everything I can,” Gabe says. She procured that extra year of eligibility and took a whopping 10 seconds off her 1,500-meter PR, down to 4:12.06. She finished second at the Big Ten championship, second at the NCAAs and scored a modest pro contract with Brooks. Justin was away at medical school, in Duluth, so she also stayed out a little later, drank a little more beer and a little more red wine, escaping and experiencing a life she’d avoided in her past. “Sometimes those nights ended in tears and drama,” she says, “because I would get emotional about everything.” She had surgery on the thyroid cancer that fall, followed by one treatment with radioactive iodine, and then she bounced back quickly.
The big cancer, ACC, stayed away for seven years, and in that time Gabe carved out a career as a solid professional middle-distance runner. She finished fourth in the 1,500 meters at the 2012 Olympic trials, ran a personal best in the same event in ‘13 (4:01.48; only 10 American women have ever run faster) and won the indoor 3,000-meter national title in ‘14.
On a still summer night in the last year of last century an overweight woman in a wheelchair appeared, as if an apparition, under a street lamp in a parking lot on the west end of campus. I had not seen her when I pulled my car in. It was an hour till midnight, and I was covered in sand.
I’d spent the night playing volleyball and had returned home to married student housing where I was summering with a friend’s wife, while he interned in Minneapolis. She was a nurse who worked nights, and I was an English major lazing between my junior and senior year. We rarely saw each other; the only complication in our cohabitation resulted from my inability to lift the toilet seat when I got up to pee in the middle of the night. In the mornings we’d cross paths and she’d tell me, again, that it was no fun to come home and sit in piss.
That night in the dark parking lot, the woman rolled her heavy body from behind a street-lamp. “Excuse me,” she said, coming closer.
“Hi!” she said cheerfully. “Can you, uh—would you be able to give me a ride home?”
She worked at a telemarketing place near the corner of University Ave. and 42nd St. Work had let out, but the buses had stopped running, and she needed a way home. She crossed the busy intersection and wheeled into the expansive parking lot waiting for someone to help her. I was tired and dirty. I just wanted to slink into the stuffy efficiency, shower, and distract myself to sleep with PlayStation. But here she sat.
“Sure,” I said. “Sure, I’ll give you a ride home.”
A palliative-care doctor once told me that we die cell by cell until enough cells succumb that we cross over a line. But if you are watching the person you love the most die, you track their breaths, not cells. When someone is dying, their breath slows. Ever-widening gaps form between the end of the exhale and the beginning of the next inhale. In that space, you, the watcher, wait to find out if the unimaginable has happened. You don’t know if this breath is the last one, or if there is another to come. You only know it’s the last breath when it’s too late to go back and tell them you love them one final time.
The first recorded cases of cancer show how the Ancient Egyptians used cauterisation (using red-hot instruments to burn off tissue and seal off wounds) to destroy tumours and to treat a variety of infections, diseases and bleeding lesions. Until the mid-18th century, surgery was the only effective option for addressing several conditions. But it was difficult and painful, as shown by the case of Madame Frances d’Arblay, an English novelist living in Paris.
Before operating in 1811, d’Arblay’s doctor didn’t shield her from the gruelling pain she would encounter during the treatment for her advanced breast cancer – a mastectomy, without anaesthetic. “You must expect to suffer, I do not want to deceive you—you will suffer—you will suffer very much!” d’Arblay later wrote that “when the dreadful steel was plunged into the breast—cutting through veins, arteries, flesh, nerves—I needed no injunctions not to restrain my cries. I began a scream that lasted unintermittingly the whole time of the incision… the air felt like a mass of minute but sharp and forked poniards [daggers] that were tearing the edges of the wound.” Yet the operation was a success, and d’Arblay lived for another 29 years.
In 1846, the introduction of ether as an anaesthetic eliminated the pain. Such was its impact that the next hundred years became known as ‘the century of the surgeon’. Yet, even in the 21st century, a neurosurgeon removing a tumour still relies largely on just his eyes and touch to guide him.
—Alex O’Brien writing in Mosaicabout the difficulty of visually distinguishing cancerous cells from non-cancerous cells in the brain. His piece explores how scorpions, Amazon.com, and the legacy of a dying girl are helping provide new tools for brain surgery.
Nicole was thirty-four, and the doctor had been direct: “It’s everywhere,” he said. “Like somebody dipped a paintbrush in cancer and flicked it around her abdomen.” I staggered down a hallway and then collapsed. I remember the tile, close to my face, and then watching it retreat as my best friend picked me up from the floor. His name is Dane Faucheux, and I remember noting, even in the midst of a mental fugue: Dane’s a lot stronger than I realized.
–Matthew Teague’s wife Nicole was only 34 years old and dying of cancer. From Esquire, this is the story of how a friendship, deep, true, and strong, became prophylactic against the dizzying litany of indignities involved in a slow, painful death.
Time for me is double-edged: Every day brings me further from the low of my last cancer relapse, but every day also brings me closer to the next cancer recurrence — and eventually, death. Perhaps later than I think, but certainly sooner than I desire. There are, I imagine, two responses to that realization. The most obvious might be an impulse to frantic activity: to “live life to its fullest,” to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time, it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. But even if I had the energy, I prefer a more tortoiselike approach. I plod, I ponder, some days I simply persist.
Everyone succumbs to finitude. I suspect I am not the only one who reaches this pluperfect state. Most ambitions are either achieved or abandoned; either way, they belong to the past. The future, instead of the ladder toward the goals of life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described, hold so little interest: a chasing after wind, indeed.
Yet one thing cannot be robbed of her futurity: my daughter, Cady. I hope I’ll live long enough that she has some memory of me. Words have a longevity I do not.
“His name was Ross Cagan. He did not work for Schadt; he worked as a professor at Sinai. But they met every week, and after Schadt called on October 1 to tell Cagan about Stephanie Lee, he listened to Cagan’s idea for her. A month earlier, Cagan had started doing something that he said ‘had never been done before.’ He started creating ‘personalized flies’ for cancer patients. He took the mutations that scientists like Schadt had revealed and loaded them into flies, essentially giving the flies the same cancer that the patient had. Then he treated them. ‘Why a fly? You can do this in a fly. You can capture the complexities of the tumor.’
“A day after Cagan spoke with Schadt, Stephanie became the fifth person in the world to have a fly built in her image—or, rather, in the image of her cancer. In an ideal world, Cagan would have created as complex a creature as possible, burdening the fly with at least ten mutations. He gave Stephanie’s fly three, because ‘Stephanie is on the shorter course. We’re making the fly as complex as possible given her time.’ By October 11, however, Cagan already had ‘one possible drug suggestion for her’—or one possible combination of drugs, since he always tests at least two at a time. ‘In this center, the FDA will not allow us to put a novel drug in patient. To get a novel drug into a patient, we have to do a novel combination of [known] drugs. We have to use novel drug combinations that people have never seen before'”