Team Meleke and the Lung Force

After 15 years of misdiagnoses, Daphne Faitla-Rodriguez's mother Meleke died of stage 4 lung cancer. Her tragedy inspired an international movement seeking standards for better treatment.

Daphne Faitla-Rodriguez and her wife are sitting on an orange kayak in front of Australia’s famed Sydney Opera House, all smiles. Daphne is holding a white t-shirt with teal and black lettering. The shirt reads: Team Meleke, Lung Force, John 4:16. This simple shirt has become part of Daphne’s mission – a mission to use her voice because others can’t. She speaks locally and nationally about what she believes is the lack of education and awareness, even among doctors, when it comes to lung cancer. For Daphne, it’s personal.

Daphne Faitla-Rodriguez and the rest of her family.

When her mother Meleke was finally diagnosed with lung cancer, the 15 years of being misdiagnosed with allergies, sinus infections, or even arthritis were finally over, but it was too late – the cancer had metastasized throughout her entire body.  It was stage four and it was everywhere; cancer had taken over her sternum, liver, spine, thighs, stomach, and back, and it was creeping into her bones. The only place it hadn’t spread was to Meleke’s brain.

Daphe was heartbroken by the fatal diagnosis, and she began to educate herself about lung cancer, questioning why she knew so little. The more she read, the more shocked was by what she learned.

“There is only a two percent chance that anyone with lung cancer will go into remission,” she recalls. “It’s the number one cancer killer in America, and 46 percent of those diagnosed are non-smokers. It’s killing people at very aggressive rates; by the time someone is diagnosed, more than half are gone within the year.”

While she pondered how it was that lung cancer awareness was so lacking, yet information on other cancers flood the news and personal conversations, she had an “aha” moment.

“The strongest advocates are people who advocate for themselves.”

“The strongest advocates are people who advocate for themselves,” Daphne explains. “When you go through something, you understand how terrible it is and you become an advocate. When I looked closely at those numbers, I realized, what time do lung cancer patients have to go out and advocate? We don’t hear about it because it’s killing people so fast. By the time you get diagnosed, it kills you before you get to tell anybody. People with lung cancer don’t have the opportunity to become activists, so unless their friends and family become that voice, nobody will.”

Looking back, what’s frustrating to Daphne is not just the lack of public education and awareness, but the number of times the medical community got it wrong. For years, doctors refused to listen to Meleke’s requests for further testing, insisting that her symptoms were related to common conditions.

Meleke grew up in American Samoa, raising Daphne and her seven siblings on the small island of Aunu’u where they led an active life and ate off the land, growing most of their own produce and consuming fresh fish. Meleke was strong – she played rugby and climbed mango trees, but she always had a persistent cough even though she never smoked a cigarette.

Team Meleke’s Lung Force shirts have become a global phenomenon. Here’s two people posing with one in Russia.

As Meleke went to doctor after doctor and received improper diagnosis after improper diagnosis, her cough got worse and Daphne knew something was wrong. Perhaps, she thought, the doctors on the island weren’t as good as those in the states. So, when Daphne left American Samoa to join the marine corps, she sent her $3,000 signing bonus to her mom so she could travel to Arizona to see a specialist. The diagnosis? Allergies. And then upon a follow-up, bronchitis. Coming from a small island, they thought that all doctors in America were “top of the line,” and they believed the diagnosis. That was 2007. In 2008, Meleke began to travel back and forth to the states to see doctors because her cough was so bad they knew something was wrong, but she was repeatedly told she had pneumonia. In 2010, she moved to Arizona to live with Daphne’s older sister.

By 2014, Meleke was much worse, suffering from terrible back pain, and she returned to the doctor again. The newest diagnosis came back as arthritis. Meleke, finally fed up with diagnoses that did not seem to fit her symptoms, demanded a lung x-ray, believing she had lung cancer. Six months and multiple demands later, she received her scan and her diagnosis.

“When the doctor finally learned the true diagnosis, all he could say to my mom was ‘I’m sorry.'”

“For the past who knows how many years, my mom had been taking allergy medicine for lung cancer,” says Daphne. “When the doctor finally learned the true diagnosis, all he could say to my mom was ‘I’m sorry. Not only do you have cancer, but it’s Stage 4 and you have only six months to live.’”

“I was in complete shock. It was everywhere, throughout her entire body, and nobody found it. How crazy is it that the patient demands the scan and they find everywhere, except her head. HE was the doctor! This is what he does for a living; it’s not a hobby. He’s done this for the majority of his life and he had to wait for the patient to tell him what she had?”

“The system is terribly flawed.”

Meleke chose to fight, underwent chemo and radiation, and lived for another two years, beating the odds. During that time, Daphne focused her attention on her mother, and she began to learn everything she could about lung cancer. Before she became too sick to have meaningful conversations with her children, Meleke made a request of Daphne.

“My mom said, ‘I want you to tell people about this,’” Daphne recalls. “‘Go out and tell people. If you can share my story and save just one life, it will make all of my pain and suffering worth it.’”

Now Daphne is doing just that, and she won’t stop until things change. She’s made lung cancer awareness her mission, passionately stating that everyone, including doctors and politicians, need to learn more about this often misdiagnosed and fatal disease.

Shortly after her mom passed away, at the age of 56, Daphne took the first step by signing up for a lung cancer walk, and that fueled her passion. She began to look at the bigger picture, recognizing that it has to come from the top. If the government doesn’t provide the proper funding for research and education, then doctors will not be able to recognize the symptoms and order the proper tests to diagnose early. According to the American Lung Association, only 16 percent of lung cancer cases are diagnosed at an early stage, but if there was more knowledge and awareness, Daphne believes that more patients will survive.

“My mom said, ‘I want you to tell people about this…'”

Daphne has taken her advocacy to the state and national capital. She’s shared her mom’s story with district leaders, state representatives, and the staff of her senators, John McCain and Jeff Flake. Each time she told her mom’s story she became emotional, and they cried with her. For Daphne, that was powerful – she felt she got through to them. She would then voice her concerns that lack of funding and education are killing people unnecessarily.

“How is that our doctors – who are supposed to know everything, who are supposed to be able to detect these things – do not know,” Daphne questions. “Something I’d been taught in the marine corps is that if leaders don’t give their people the tools and resources necessary to do their job, then they are going to be unsuccessful. That is why it was extremely important for me to go to Capitol Hill. When all of these doctors can’t find it, I don’t think it’s their fault at this point. I think it’s the fault of our education system.”

“So, I went to our leaders to tell them that this isn’t just an issue in the state of Arizona, it’s flawed throughout the entire country. You are the leaders and you need to do something. You are the ones that need to provide our doctors around the country with the right tools and resources to fix people because you are the leaders.”

“When I look at it, how do you know something is wrong when you’ve never been taught how to find it? Or, you haven’t been given enough information to know how to find it? And I think that’s the issue with lung cancer right now – doctors just don’t know.”

Team Meleke at Niagra Falls.

When not speaking to politicians and leaders, she’s spreading her message locally, nationally and internationally.

Locally, Daphne is a leader for her security team at Palo Verde, the largest nuclear power plant in the United States. Before each shift begins, the leader will ask their group questions, and hers always focus on lung cancer. They learn important facts, such as lung cancer is the number one cancer killer, and it begins a conversation that she hopes continues in their homes and with their friends. She also serves as the emcee for the local Lung Force walk, kicking off the event and introducing the speakers.

Nationally and internationally, Daphne spreads the word with her Team Meleke t-shirts. The concept was created when she and her wife were kayaking in Sydney, and it went viral. While the goal was to spread awareness about lung cancer, she had no idea just how far it would go. She originally created the shirts to build awareness and then developed the Team Meleke Challenge, encouraging people to take the “coolest picture holding up the t-shirt.” But what happened next, surprised her. She began receiving photos from around the country and world with strangers wearing her shirt in Boston, Washington, on the mountains of Hawaii, Canada and even Russia and Germany. Family, friends and strangers people post pictures of themselves in their shirt to her Instagram account, @rodsquad13, spreading the awareness that Daphne believes is so lacking about this disease. The Team Meleke Challenge has become so popular that she began receiving requests for next year’s shirt before the current year was even close to over.  Daphne decided she will create a new t-shirt style every year so she can track how far and often her message is spread throughout the years.

Daphne is just getting started. In less than two years, her advocacy has been seen in the halls of Congress and on the streets of Europe, plus everywhere in between. As she continues to find new ways to help spread the word and increase education, she keeps her mother’s memory alive, doing what Meleke asked and hoping to save at least one more life.


Reconstructing Dad

After two bouts of cancer and two hit-and-runs, my dad is more active than ever... and teaching me new lessons about what it means to live life to its fullest.

Dad was in his seventies when I finally won a game of tennis against him. The win was bittersweet. In the past, eager for me to take up the sport, Dad let me have points; this time he didn’t, because he couldn’t afford to. His feet were not working like they used to. Neuropathy–a disease affecting the nerves–was slowing him down, and my win was overrun by the realization of how limited our interactions might soon become.

As an adult, Dad was always active. Because he was something of a social misfit, sports like tennis, skiing, and yoga gave him something to do with others that–unlike small talk–made him feel comfortable, and which he could excel at.

Before he became sick, the sport Dad loved best was skiing, but he soon gave it up when his feet started hurting from the cold. For similar reasons, he had to give up tennis shortly after my bittersweet win. Frustrated, he resorted to long swift walks, finding historic trails to explore. At first, I worried about him on these walks, but soon tucked away my fears of his mortality. I decided to take advantage of the time we had left, and do something we enjoyed together. We embarked on a camping trip like we had done when I still in high school.

Because he was something of a social misfit, sports like tennis, skiing, and yoga gave Dad something to do with others that–unlike small talk–made him feel comfortable.

When I was sixteen, Dad took me to the border between Minnesota and Canada to a string of lakes that he had camped at as a kid. There, I saw firsthand his love for canoeing, sleeping in a tent, and eating food cooked over a fire he had built himself. I remember, specifically, him telling me once about winning a canoeing award at summer camp when he was ten years old. As he told me the story, I could imagine my awkward, friendless father feeling like a champion with his paddle.  I’d never seen him seem so proud.

On that trip, Dad imparted to me the many ways in which camping can be empowering. My father seemed superhuman as he portaged over rocky hikes from lake to lake. We sung in the rain and laughed at our sore muscles while we lived in continuous motion, paddling, walking, setting up a tent, or making our food.

Our second camping trip, when he was seventy-five years old, felt different. I panicked each time he lifted the canoe, or took a moment to catch his breath. Instead of enjoying the gorgeous scenery as we glided along, my mind was working out the details of what I would do if he had a heart attack in the woods. I calmed down each time I spotted a road or a house on the horizon where I could run for help in case of emergency. I found the experience so stressful that, after it was over, I vowed that the only way we would ever go camping again was if I had a boyfriend who could go with us. (That hasn’t worked out yet.)

A couple of years after that trip, my Dad was diagnosed with bladder cancer. Since my parents were in Florida at the time, I called the hospital before he went into surgery in case it was the last time we would connect. Dad’s voice was filled with gravel and salt. He didn’t want to talk much, but I told him that I loved him and he had always been my hero. He perked up and wanted to hear more about that. I talked about the time he took to drive me to school, the ski hill, or out to California. I told him how he had given me a love of books, a memory for numbers, taken me sailing, and made sure I could swim. He soon got tired and I thought that goodbye might be the final one.

But Dad recovered, almost like new. He didn’t go swimming anymore, because he now had a urostomy bag, but he stayed active. One of my following visits, I asked if we could rent bikes. Mom joined in, and we had a terrific time roaming the quiet streets in the small Florida town where they’d settled. Shortly after, Dad took up biking as his main form of exercise and fun. He joined a bike group and started racing in local events. I felt proud of Dad’s resilience and silly that I had put his age and ailments in a box marked doom. Dad was thriving, happy as ever, and still living a physical life after not one but two diseases had almost put him in the ground.

I felt proud of Dad’s resilience and silly that I had put his age and ailments in a box marked doom.

Then I got a call.

“Dad had an accident,” my mother told me over the phone.

A car hit my father while he was running an errand on his bike; the driver fled the scene. I couldn’t imagine who would leave an eighty-year-old guy lying on the ground, but somehow, Dad got to the hospital. He was lucky: aside from bruises, he escaped with only a few broken bones in his arms.

The accident couldn’t deter him from getting back on his bike once he was healed. Even after his hit-and-run he’d bike as much as 20 miles a day, and seemed to enjoy pushing himself. His resilience inspired me. I, too, took up biking in the city again, and decided that if my Dad wasn’t going to let preconceived notions of what he was capable of get in the way of doing bike races as a cancer survivor at age 86, I shouldn’t be afraid to go back to school as an older student.

As I get older myself, Dad’s taught me that aging isn’t anything to be scared of.

It was around this time that I started to feel like I really understood my father. Before, I had always viewed my father as the quiet, loner type. Now, I realized that for Dad, staying active was a path to empowerment. He always said that he only wanted to stay alive if he was active and healthy: he never wanted to feel confined. His illness and accident showed me how he was more of a hero than I had imagined. Nothing–not neuropathy, not cancer, not even a hit-and-run–could slow him down.

And nothing did. Shortly after his first hit-and-run, there was a second cancer: a slow-growing multiple myeloma–a cancer of the white blood cells. He went on pills for it, and got back to his hobbies. Then, unbelievably, there was the second hit-and-run. This time, Dad was just standing at a newsstand: a truck somehow backed into him, then fled the area. This time, Dad didn’t even bother going to the hospital. He just drove to Wal-Mart, picked up a couple of canes, and in a couple of weeks, was back to his 20-mile bike.

I feel stronger, knowing this is my father. Sometimes, when I think about all I have learned about him in the last few years, I feel awed: far from being the awkward outcast I mistakenly believed him to be most of my life, he’s a living example of not allowing age, or illness, or anything else define you. True, a part of me worries about him, and wants to wrap him in an anti-aging cloak and keep him here forever. But as I get older myself, Dad’s taught me that aging isn’t anything to be scared of. In fact, it doesn’t have to mean anything at all… unless you let it. No matter how old or how sick, you become, the world will always be full of moments to enjoy, and challenges to take pleasure in overcoming.


Out of Body

Getting breast cancer felt like being cheated on: even after it was over, as with many infidelities, it took me a while to learn to love my body again.

Until I was diagnosed with Stage IV inflammatory breast cancer, I didn’t think much about my body. I relied on it, of course, and I took care of it (exercise, green leafy vegetables, triple chocolate brownies). And it took care of me, until it didn’t. Most of us operate that way, I think. It’s almost an automatic response. Wake up, brush teeth, put one foot in front of the other, make breakfast. Until you can’t. Until one day your eyes open and your body doesn’t cooperate. Until you can barely sit up in bed, much less get to the toothbrush or the kitchen.

Laura at her son Roman’s second birthday party, taken during treatment.

And that was the biggest shock of all. When I heard the word cancer, I thought of chemo, bald heads, vomit, and exhaustion. I didn’t think I would lose my physical being—the part of me that loved to dance, play tennis, jump into a swimming pool, hold hands. I hugged with abandoned.

But as I started treatment, I retreated. It started with the PICC line, making sure no one got near my right arm. And when I got a chest port put in, any form of hug became incomprehensible. I didn’t want anyone to touch me. Everything hurt. A nod, a hand squeeze, a wink became my preferred way of communication. As the chemo drugs did their thing, my mouth and my eyes and even my balance were foreign to me. Sometimes even talking was just too exhausting. I became fearful of my body, of what it was doing to me and what people were doing to it.

It’s not just the treatment itself that seizes your physical body; it is the lack of movement from being in treatment. I woke up every day feeling like a stranger. Where was the strong body that had carried two babies and delivered them without a hitch? Where was the body that had run through the hills, walked thousands of miles in cities around the world, and that had breathed in and out without me even thinking about it?

I would sit on a park bench and just watch people move: walk a dog, throw a Frisbee, catch a ball. I ached for my old body.

Suddenly I could barely walk. The trek through the hospital halls to the parking lot felt like a marathon. Traveling for treatment I relied on wheelchairs in the airport to get me to the boarding gate. My soul resisted these changes. I yearned for the ability to move my body in ways that were joyous and positive. I would sit on a park bench and just watch people move: walk a dog, throw a Frisbee, catch a ball. I ached for my old body. I wanted to sink in a pool of water and float for hours. I wanted to sit in a swing with the kids and spin until we were dizzy. But instead I sat in my bed, stuck in a cycle of vertigo and nausea; I swam in visions of darkness and death. I watched the rain drip from the leaves outside, or the sun create shadows on the house next door, listened to a dog bark down the street. I was motionless. My physical being was gone, lost in a swirl of IV lines, medication bottles, needles.

So while I was trapped in stillness, I decided to watch the physicality of others. My mom bought two tickets to a Cirque du Soleil performance. I hobbled into the theater, my mom holding my arm, and we settled into our seats. The performance began and I sat still, staring at the performers. Their ease in movement, in flight, in motion, and bodies that did what they told them to do—it left me breathless. What must it feel like to wake up in a body that moves so easily. I wanted to touch the acrobats, to feel their muscles, to feel the blood running through their veins, to feel and absorb the life I saw in them. I wanted a body that reacted to touch, that craved sensation. My body had become a pincushion, a way in for medication, a thing to be healed. A body that other people talked about in front of as if I weren’t even there.

I cherish my body, this body that put up the best fight against cancer.

But seeing that performance sparked something in me. Something that made me move a little more, made me forgive my body a bit, too. I walked a little more each day, to the mailbox and beyond it. After the first surgery I made it up and down the wide hospital hallway on the second day, clutching my IV pole. Then more walks: past the marsh with my sister; down a city street with the kids to get ice cream; with my friends to see the ocean. Slowly, slowly, the energy returned. My being returned: I remember the first time I danced (a tango class with my husband for Valentine’s Day), and my first hike up a hill.

The contrast of the before and after is profound. I cherish my body, this body that put up the best fight against cancer. This body that came back to me, a little worse for wear but still here.  I move it every day in countless ways, and even dance in my sleep, sometimes. Finally, the physical me matches the mental me. I am whole again.

Creative Commons photo by Louish Pixel.


The Art Of Coping With Brain Injury

Dutch artist Tom Heerschop aspired to be the greatest artist since Leonardo Da Vinci. Then he developed a brain tumor the size of a sweet potato.

In 2008, Amsterdam-based artist Tom Heerschop was in his kitchen on his son’s sixth birthday, about to cut the cake, when he felt a violent pressure in his head. “My head felt like a train was arriving, and I had to catch that train,” Heerschop says. “I ran downstairs. I heard strange sounds and smelled strange smells. I thought I’d gone completely crazy.” Outside, he had a seizure, his first. It lasted for 45 minutes.

After waking up in the hospital, Heerschop asked for an MRI scan. Doctors in the Netherlands don’t automatically administer MRIs to patients suffering from seizures, but Heerschop insisted. One month later, a scan revealed a benign tumor, the size of a sweet potato, in Heerschop’s brain.

Though tumor discoveries are not usually described as such, “it was a big relief,” Heerschop says. Finally, “everything made sense.” For ten years, he had been afflicted with severe depressions, violent outbursts, migraines, and personality changes. He illustrated these afflictions in his daily “Depression Diary.” In self-portraits from the diary, the artist’s brains explode out of his head, his face is pocked with greenish boils, his eyes are black caverns. Though he tried everything from psychoanalysis to singing bowl therapy, none of his symptoms responded to treatments. When the tumor was discovered, Heerschop realized, for the first time, that his psychological condition had a physical cause.

Though tumor discoveries are not usually described as such, “it was a big relief,” Heerschop says.

Growing up in Bussum, a town 20 minutes from Amsterdam, Heerschop loved to draw. “As a kid, I was in my most natural habitat when drawing,” he says. “It made me quiet and happy. Everywhere we went, I had my little notebook.” He attended a Waldorf School, known for its encouragement of children’s creativity. At 16, he started taking weekend painting courses, and by 18, had his own atelier. At the Rietveld Academie Amsterdam, a prestigious fine arts university, he studied photography, drawing, design, and painting, and graduated in 1996. Shortly after, he got married. He felt like he was at the top of his game, “in control, at ease,” and that showed up in his artwork: Crisp pencil drawings of barns, trees, and silos; quietly surreal ballpoint illustrations of bakers baking bread.

But when he was 25, getting his master’s in art at the Sandberg Institute, Heerschop felt his psyche shifting. He began to experience depressions of a depth he’d never felt before. Crushing headaches led a doctor to prescribe him painkillers. And though he’d “always been gentle,” he started to hit his wife. At one point, he broke her shoulder bone. “I knew something was going on, but I didn’t know what it was,” Heerschop says.

One of Tom Heerschop's larger murals, completed before his diagnosis.

One of Tom Heerschop’s larger murals, completed before his diagnosis.

At his wife’s urging, he tried various forms of therapy: Psychoanalysis, rebirthing sessions, hypnotherapy, acupuncture, tai chi, relationship counseling. “Therapists tried to figure out what was wrong with me—they asked about my parents, my childhood, work-related stress, stress with my former girlfriend,” Heerschop says. “It never stopped, and none of it helped at all. That went on for ten years.” Over those years, Heerschop and his wife had three sons. At first, he was a gentle father, but soon became temperamental and violent.

Drawing was one of his few non-destructive outlets, and he was wildly productive in the studio. He made more than 100 works a year and appeared in solo and group exhibitions in the Netherlands and Italy. “A drawing a day keeps the doctor away,” he wrote of his “Depression Diary,” begun in 2000. Some work from this diary is psychedelic, lighthearted, in fauvist colors: A fuzzy stuffed penguin and a ginger cat are recurring characters. But much of it is tortured: A man in a crown slices his own head off with a kitchen knife, his black ink guts spewing; webs of paint smother the faces of sickly men with purple eye bags; an Easter rabbit with a basket of eggs gropes a nude woman; a horned demon sits in a wheelchair; a pink body curls on a cot in a jail cell. Compared to the quiet, controlled drawings from Heerschop’s college years, these works suggest psychic chaos.

“Not once did anyone come up with the idea that maybe all my problems had something to do with something inside my body, instead of my personality,” Heerschop says in a 2013 TEDx talk.

By the time the tumor was discovered in 2008, it had been growing in his brain for at least ten years. It was a millimeter away from his ear and a millimeter away from his eye. If it had gotten any bigger, he would have gone blind and deaf. “At first, I thought I was going to die, but doctors assured me I would survive,” Heerschop says.

The operation that removed the tumor left a scar shaped like a backwards question mark curving from his hairline down to his ear. Though recovery from the surgery was tedious, “I felt born again, for a while,” Heerschop says. “It felt like a new start.”

But there was no happily-ever-after to follow. Even after the tumor was removed, Heerschop still struggled with erratic behavior and strange symptoms: Headaches, memory loss, fatigue, irritability, aggression. Sounds overwhelmed him. And, when he returned to the studio to draw, he felt slow and stuck. “In the past, when I made drawings, it was like opening a never-ending stream,” he says. “Now, this stream had dried up.” After Heerschop waited eight months for an appointment at a neuro-rehab center in Amsterdam, a neurologist diagnosed him with Acquired Brain Injury (ABI) in ten minutes. The tumor had done considerable damage to his frontal lobe.

Tom Heerschop as seen on his official website.

Tom Heerschop as seen on his official website.

An intensive neurorehabilitation program educated Heerschop about ABI and taught him coping mechanisms, like mindfulness and body scan exercises, which he now does for 35 minutes a day. “It leaves me feeling completely reloaded,” he says. “I’m trying to draw with more mindfulness.” But the damage is irreversible, and challenges persist. About every three months, he has a seizure. After working for 45 minutes, he’ll have to rest or take a nap. “Thinking is tiring. If a child is talking while the TV is on, those sounds together are too much for me.” But for the first time in his life, he knows the cause of these symptoms, and has a support system that helps him manage them.

After the surgery, Heerschop and his wife split up. Two and a half years ago, he reconnected, via Facebook, with Bregje deVries, a former girlfriend, whom he’d fallen in love with while “young and kind of restless.” Now, “less restless,” he lives with DeVries, an educational scientist, who acts as his agent and helps him manage his medications and schedule.

In a way, this disease helps me to be much more reflective in everything I do.

“In a way, this disease helps me to be much more reflective in everything I do,” Heerschop says. “So many people just go into work and work too hard to earn money and come home and don’t think about it. I really have to think about the worth of everything I do.”

Heerschop’s life story is front and center on his interactive personal website, designed earlier this year by Utrecht-based Studio Airport. In a black-and-white video loop, the artist stares out from the homepage, blinking, occasionally laughing or scratching his nose. When you click on his head, animated fragments of his drawings pop up: A purple lizard-creature flicks its tongue; a bug-eyed bluebird peeks into the corner; a bonfire sprouts from Heerschop’s forehead. “There was only one way to make this site: Putting Tom’s photograph as the front door you have to go through to get to the work, entering his head and following all the series of works that sprang from it through the years,” deVries says. Nearly 1,200 of Heerschop’s artworks are displayed in chronological series from 1996 to 2015. Together, the series of drawings tell the story of his illness from the inside out: You see the evolution from crisp, controlled monochromatic still lifes, to scrawled stream-of-consciousness works in riotous color, to drawings about the tumult and excitement of early parenthood, to the depression diary, to hallucinatory works made while recovering from surgery, featuring cross-sections of brains and slinkies popping out of skulls.

One of Heerschop's later drawings, made as he recovered from brain surgery in 2012.

One of Heerschop’s later drawings, made as he recovered from brain surgery in 2012.

Before his operation, Heerschop averaged one drawing every two days; now, he’s lucky if he finishes one in three weeks. Instead of aiming to match the machine-like output of his earlier years, he’s changed his approach, experimenting with large-scale, ongoing works. “I let go of the idea that you can finish a drawing. It’s much more difficult for me to make one single image—that blocks me, in a way,” he says. “I’m now trying to find a way to make endless drawings.” His most recent work, a nearly 30-foot long panorama in black marker on white paper, took four months to complete. Featuring serpents and phalluses emerging from flames, bodies with giant eyeballs for heads, missiles with legs, and fractal-like arrangements of pencils, it was an abstract response to the terrorist attack at Charlie Hebdo in January 2015.

“I’m not yet in a place where I’m making my best work after my operation,” Heerschop says. “He’s always doubting his work,” deVries says. “But I’m his biggest fan.” Despite the perilous setbacks, he doesn’t plan on retiring any time soon. “Drawing is more than a job— it’s my love, it’s my blood,” Heerschop says. “I’m gonna draw forever.”


How Charlie Brown Helped Save My Best Friend’s Life

A 1990 Peanuts special helped me get my friend to the doctor when she came down with a rare bone marrow disorder.

In 1993, I was sitting on the indestructible grey carpet of my second grade classroom, while our teacher stood on her tiptoes to load a VHS tape into the TV. There were 45 of us there–girls in scratchy green and grey plaid jumpers, boys in playground rumpled khakis and white shirts–and we had been assembled to watch a movie. It was called Why Charlie Brown, Why? and it would teach me the most important thing I ever learned in that classroom.

As Vince Guaraldi’s iconic Peanuts theme began, everyone got comfortable on the floor, grabbing pillows and making sure they could see the screen. I saw my classmate Nick walk out of the classroom with one of the teachers. She had her hand on his back, six or so inches below his bald head, which was covered in temporary tattoos.

Nick had cancer, and it meant that his life diverged from ours like a stream that branches off of a river, maybe to rejoin it done the line. He would sometimes be absent for days on end, or go to the nurse’s office in the middle of the afternoon while the rest of us were in class. I didn’t know where he went, or what he was going through. That’s probably why the teachers had put the movie on.

Nick had cancer, and it meant that his life diverged from ours like a stream that branches off of a river, maybe to rejoin it done the line.

I turned my eyes to the TV, where Charlie Brown and his friends were waiting for the bus. I watched Peanuts at home, so I was familiar with the entire gang. When Linus appeared on screen, he was next to a cute blond girl named Janice. He’d been pushing her on the swings, and the two were clearly crushing hard. As they boarded the bus together, Janice hit her elbow on the railing.

“Ouch! Now I have another bruise,” she glumly moaned. She then starts cataloguing her bruises for Linus, showing dark purple patches all up and down her arms and legs, including some that hadn’t healed even from the week before.

“You sure bruise easily,” Linus says. “I never used to,” Janice responds.

A few scenes later, Janice says she’s feeling tired and goes to the nurse’s office. Three days later, Charlie Brown and Linus go looking for her, find out she has cancer, and visit her in the hospital. Over the course of the next twenty minutes or so, the Peanuts gang learn all about cancer, and its warning signs. Then the movie ended, and I mostly forgot about it for the next 13 years.

Why, Charlie Brown, Why by WarriorMovies

In 2006, I was living in Florence, Italy, doing an extended study abroad program at an American university. It was a crisp November day after a week-long fall break, and I was outside. Across the courtyard, I spotted Anne, one of my best friends since middle school. She taught me how to play ping pong, and I taught her about the culinary joys of putting ketchup on eggs. We wandered the mall together, sharing small bags of chocolate-covered gummy bears, and window shopping fake silver jewelry. One day, when we both happened to be home with a cold, we spent the entire day on the phone, watching trashy TV and talking. I had to call her back multiple times when the cordless phone battery died. We drifted apart in high school, but we’d somehow ended up at the same abroad program, where we became close again.

Anne spotted me, waved, and walked over. She just got back from a trip to Istanbul, she said. She started to tell me about her trip, but I can barely concentrate on her story. We both had white skin, and our summer tans are all but gone in the fall light, but she looks ashen. While she spoke, I found myself focusing on her lips. Normally pale pink, they were now almost white.

The conversation shifted, and Anne mentions that she’s feeling really tired. She’s been getting bruises lately, bruises she can’t remember getting, bruises that take too long to heal. I flashback to the Peanuts cartoon: Janice on the swing, Janice with bruises, Janice in the hospital. Anne with cancer.

 I flashback to the Peanuts cartoon: Janice on the swing, Janice with bruises, Janice in the hospital. Anne with cancer.

Anne might well have gone to the doctor without me. The fact that she’d brought up her fatigue and bruises at all meant she must have known, on a subconscious level, she was sick. But I was the one who pushed her, then and there, to call a doctor. Once I made the connection between her and Janice, I couldn’t unsee the pallor of Anne’s lips, or unknow that excessive bruising can be a symptom of deadly bone marrow diseases. “You have to get a blood test, now,” I told her.

A few hours later, I saw Anne again. She had taken my advice, and gone to a doctor, who had drawn blood to test. She heard back almost immediately: her white blood cell count was almost nothing. She had to go back and meet with the doctor immediately. The next day, she was admitted to the hospital, and Anne would spend the next few months battling to save her life from a rare bone marrow disease called Severe Aplastic Anemia.

Anne wasn’t allowed out, so I tried to bring the outside to her with stories about my crazy cat, Eva Cattiva, and my ridiculous love life. I did anything to make her laugh. Then, when visiting time was done, I’d leave, getting back on the bus to wind through the darkening streets back to my apartment. I was too revved up to eat, so I spent the week baking cookies — batches and batches of them — for everyone I knew. I gave them to my roommates, the men working in the small restaurant below my apartment, the butcher next door, all the administrators at school, and anyone else I could pawn them off on. One of the teachers eyed me closely  as I handed her another plate of chocolate chip cookies. “Are you okay?” her look asked.

Recently, I rewatched Why, Charlie Brown, Why? I was struck by how many details they left out, or softened. The bedroom-like hospital room that Janice stays in was a far cry from the shared room that Anne was brought to. Unlike Charlie Brown and Linus, who wore their school clothes to meet Janice in hospital, I had to wear a full-body, pale blue medical suit before visiting Anne. Also different from the cartoon: the infinite pokes and prods, blood tests, IVs, needles. The PICC line, its gruesome name matching its equally gruesome function. And I only saw it from the outside. There were a thousand jabs I never saw, and that’s Anne’s story.

That little movie is why, years later, I still have a best friend. Thanks, Charlie Brown.

But the biggest thing that was absent from the movie: the fact that not everyone survives. Thanks to a bone marrow donor in Germany, Anne received a transplant in March of 2007, and is now a healthy 31-year-old. But in 2005, the year before Anne got sick, Nick passed away after his cancer–which had been beaten into remission when we were kids–returned.

How important was Charlie Brown to saving Anne’s life in the long run? It’s impossible to say. What I do know is that when I remembered seeing that movie in my second grade class, Anne was closer to death than any of us knew. One accidental cut, from a cutting knife or even my cat’s claws, could have bled her dry. When things are that close, every coincidence, every small decision, every awareness matters. Whether a big reason or small, that little movie is why, years later, I still have a best friend.

Thanks, Charlie Brown.


The 15 Year Long Headache

Joshua May has woken up with a headache every single day for the last 15 years, but he's still not going to let life pass him by.

Having had Hodgkin’s lymphoma when he was sixteen, Joshua May has intimate knowledge of the inside of hospital wards, and of how incredibly short life can be. He says beating the illness during his teen years taught him to appreciate what he has, and he tries to live every day with this attitude.

But there’s something worse, to Joshua, than having cancer. It’s what he has now. New Daily Persistent Headache Disorder, a condition which is exactly what it sounds like: a headache that never goes away. One of the ways in which NDPHD gets diagnosed is the patient can pinpoint the exact date their headache began. Joshua’s headache started on March 14, 2003. He has now had it for 5286 consecutive days.

Joshua May has had a headache every day for the last 15 years.

He compares the chronic pain of his headache to cancer–and thinks the cancer was easier in many ways. For one, it’s easier for others to understand. They know it’s Bad™.  Doctors also know what causes cancer, so there’s a treatment path. Not so with NDPHD, which is defined mostly by symptoms, not causes. 

“With cancer, there’s an obvious treatment path. People empathize with you when you’re bald and vomiting. You’re allowed to take time off work, or just, like, life. Cancer is visible on scans, so doctors take you seriously. And there’s advocacy groups and support groups and, hell, entire teams of researchers trying to work out how to fix people with your problem in even better ways.”

“But if you try telling people you have a headache,” Joshua points out. “Well, you’re never going to get the same reaction.”

Joshua is a software engineer in Berlin, Germany, working on products like the menstrual tracking app Clue, and Taxfix, a tax refund site. The job is flexible around his health, and he manages his pain with a mixture of medication and biking outdoors. But having an invisible illness presents a range of challenges, access to medication being one of them. He’s lived and worked in five countries across three continents, but every time he moves, he has to start over with new doctors and new healthcare systems.

“Even within the same system, there are so many different factors. A young doctor versus the older doctor  at the same practice can have vastly different attitudes to what they’re willing to ‘believe’ and how far their compassion can bend. My only real success is trying, trying, trying until I find someone that will listen. That’s probably something 99% of people with chronic issues can relate to. Unfortunately it’s only getting harder as ‘the painkiller epidemic’ [focused on opiate use] spreads everywhere.”

Neither cancer nor NDPHD have stopped Joshua from traveling the world and living abroad.

Along with the difficulty of being believed by doctors and accessing appropriate medical help, Joshua says chronic pain interferes with interpersonal relationships. “I find it hard to say ‘I’m having a bad day… again’,” he says. “Everyone has a suggestion on how to “fix” your problem. My pain is unpredictable and unique and it’s probably going to get worse, which is really isolating.”

Romance is also difficult. The four little words “I’ve got a headache” have become such a well-known excuse for not wanting to be intimate that our society has literally turned them into a punchline. But losing his interest in sex has killed at least one relationship for Joshua. “It became breaking point, unfortunately. I did a pile of tests to see if anything else was affecting my libido. Nope, testosterone fine, everything checked out. It’s literally all in my head.”

It’s always hard to get out of bed with a headache, but Joshua says waking up every day with one is enough to drive anyone mad. “It’s one thing to wake up with a headache, but knowing the second you sit up, you’ll get a rush of blood and it’ll cause your head to throb. And that’s just the start of the day. If I could just have an hour of respite to get the day going, I feel like so much would be easier.”

Headaches can’t get in the way of savoring life to the fullest.

It sounds like hell. But having had cancer taught Joshua a lot about not giving up, and understanding when you’re making progress with an illness. Not all of your milestones are epic, but they add up: you need to celebrate them all the same. 

“I remember the day I realized [the chemotherapy] was working. I had my first treatment on a Friday, where I couldn’t eat a bit of cheese without choking. By the Tuesday after, I was able to eat a proper meal without any real issue. You couldn’t wipe the smile from my face that day!”

But neither chronic headaches not cancer are going to get in the way of Joshua living his life to the fullest.

“I think my adult life is heavily tinted with a general idea that you can’t put off happiness until retirement. I wouldn’t be surprised if I don’t make it retirement, due to the chemotherapy, so I have to live my life while I’m here. It’s a good reminder to make everything worthwhile. Don’t waste your life causing problems. Just try to do good things.”

The Good Fight

Kids Fighting Cancer With Jokes (And Groucho Glasses)

Abbott and Costello, Laurel and Hardy, Jack Lemmon and Walter Matthau….Max Chawtko and Alex Travin?

It was another rainy day in Chappaqua, NY, and Max Chawtko and Alex Travin were bored. Stuck in their classroom for indoor recess, the two eight-year-old besties were desperate for something to do. Then inspiration struck. Max’s five-year-old sister had recently been diagnosed with brain cancer and they had a brilliant idea: tell jokes as a way to raise money to support pediatric brain cancer research.

Of course, since they’re eight-year olds, Max and Alex have a more roundabout way of telling the story.

Max and Alex.

Alex: I came over to Max and asked if he wanted to tell jokes with me and people will pay.

Max: No, that’s not what happened. Me and Alex were playing and decided to do something with jokes together. So we decided to make up something called Jokes for Scarlett. We wanted people to bring in five cents and then we would tell them a joke.

Alex: On the first day we offered free jokes. We didn’t tell that many jokes, and they weren’t that good. We were just getting started.

Max: We made a sign in the back of the classroom and wrote “Jokes for Scarlett on it.

Alex: A few people came back to listen.

Max: The next day, was indoor recess again and one kid brought in $20.

Alex: No, it was more like $5.

Max: No, don’t you know how to count your money? It was $20. And five other kids brought in money.

Alex: No, it was three other kids.

Max: No five. I know, how about we round it out and we say four kids?

Alex: We didn’t know people would come back with money. We gave Ethan a lot of jokes because he brought in more than five cents.

Max: No, he brought in a bunch of dollars. You should say more than five dollars. But he didn’t empty his piggy bank. He says he has lots of money.

Alex: At least that’s what he says…

Q: What do you call a mean cow?

A: Beef jerky!

The boys, known by their friends and family for their impeccable comedic timing and entertaining banter, realized they were on to something. As word spread and kids began to empty their piggy banks in order to hear a joke and support the cause, they boys began to dream big. They wanted to reach a larger audience than the kids at Roaring Brook Elementary School in Chappaqua, NY.

So, unbeknownst to their parents, they began telling their classmates that they would set up a table at their local farmer’s market. No stranger to fundraising–with the help of their parents, the boys had previously helped create a 40-person team that raised $30,000 for Swim Across America that previous summer–they quickly spread the word.

Alex and Max manning the first Comedy Kids event at their local farmer’s market.

“Suddenly, people were contacting me and stopping me on the street to ask how they could donate money and when the boys were going to be at the Farmer’s Market,” Robin Chawtko, Max’s mother, recalls. “I had no idea what they were talking about.”

Max: Our moms asked us to explain our idea to them. Then they asked us to come up with the name. It took us two business meetings to come up with that.

Alex: We went to Starbucks for our first business meeting. Our moms helped us with names. One idea was the Westchester Jesters, and another one was Two Stooges.

Max: But we liked Comedy Kids. At our meetings, we talk about our business.

The boys’ moms got to work and began taking the necessary steps to reserve a spot at their local farmer’s market, a popular place where their small town gathers on Saturday mornings to buy fresh, local produce and goods while catching up with friends. As the moms worked behind the scenes, Max and Alex began planning and got the word out.

They purchased a website,, and the boys began to advertise around town. They put up posters, told their friends, called the local paper and even appeared on their school’s morning announcements. Every morning, they told a joke and reminded the students and staff to visit them at the farmer’s market to help them raise money to support pediatric brain cancer research.

Q: What did the fish say when he swam into the wall?

A: Dam!

Max and Alex knew they could pull this off. They’re such close friends they finish each other’s sentences. They also bicker like an old married couple: their humorous dialogue entertains everyone within earshot.

Max: We’ve known each other for three years

Alex: No, no, actually more.

Max: I think four years. We met in kindergarten.

Alex: No we didn’t. We met at a library sleepover before kindergarten began. It was two weeks before kindergarten.

Max: Yeah, but we weren’t best friends then. We did play with each other.

Alex: But we didn’t sleep over. It was bring something that you want to have sleep over at the library.

Max: Oh yeah, and I brought Howie, a huge giant bear, remember him? It was as big as me at that time.

Alex: No it wasn’t.

Max: It’s more than five feet tall, and I’m about four.

Alex: You’re not four!

Max: Yes, I am. How tall do you think I am?

Alex:  I don’t know.

Alex and Max on stage at Saturday Night Live.

On November 5, 2016, they set up a table at the Farmer’s Market. They placed a box filled with jokes on top– some they created on their own and some they got from books or the Internet. Each person who approached the table was asked to make a donation in exchange for selecting a joke. The average donation was $20.

Comedy Kids had several hundred visitors that day. They also received donations via their website from friends and family around the country. Each time a donation is received online, the boys send a joke by video as a thank you. By the end of six weeks, they had raised over $20,000 – all of which was donated to pediatric brain cancer research.

Q: How do you drown a hipster?

A: In the mainstream!

The Farmer’s Market was their warm up act. Two days later, they decided to take their show on the road, via other children throughout the country. The boys hope to inspire others to use comedy to raise money for whatever cause they support. Max and Alex have developed a kit, free to any child, which includes joke cards, two t-shirts and two pairs of Groucho Marx glasses, that timeless comedic prop. Comedy Kids also provides tips on how to create a successful event, including location suggestions, how to spread the word and even how to contact the local news. They’ve already received orders from New Jersey, Texas and Hawaii.

Comedy Kids recently launched a podcast. The boys’ first interview was their friend Ryan; he taught them how to armpit fart. They have conducted several more, all no longer than seven minutes, and are currently in the editing phase. Max and Alex are also on social media, posting jokes, using hashtags and creating videos. They have a Facebook account, they tweet and they’re even on Instagram.

Max: We’re not comedians. We’re not like Billy Eichner or Ben Aarons.

Alex: Well, I consider myself a comedian; he doesn’t. I like the title.

Max: Actually, I am a comedian, I’m like Billy Eichner. Like Billy on the Street! He’s my favorite comedian.

Alex: The part he likes the most about Billy Eichner is the curse words!

Max: No, that’s not what I like the most! He asks questions to random people and makes weird faces to the camera. He’s like (makes a face)….

Alex: That makes you look meshuganah.

Q: What has 18 legs and catches flies?

A: A baseball team.

In May, the Comedy Kids were treated to the surprise of their lives: they were honored by the New York Yankees as part of HOPE (Helping Others Persevere and Excel) Week. That morning, the boys, their moms and sisters were brought to Manhattan where their first stop was Saturday Night Live. While standing on the stage, one by one five Yankees players walked out, greeted the boys and handed them a $10,000 check: $2,500  was donated to A Kid’s Brain Tumor Cure and the remaining $7,500 was given to their new campaign with the Dana Farber Cancer Institute. After reading cue cards and telling jokes to the Yankees, the Yankees had their turn to entertain Max, Alex and their families before everyone sat down for lunch.

After lunch, the boys headed to The Tonight Show where they met Jimmy Fallon, joined him in the “Tight Pants Dance” – one of their favorites, sat in his chair, gave him bunny ears, ate The Tonight Dough ice cream with him and told jokes on his stage. The highlight? Jimmy Fallon’s tweet: “Those kids were funnnnyyyy!!!” with a picture of Jimmy, the kids and the Yankees.

Meeting Jimmy Fallon. “Those kids were funnnnyyyy!!!

Q: How do you tell a snowman from a snowwoman?

A: Snowballs!

Once they arrived at the Yankees game – the only part they knew about in advance, Max and Alex were on the field for batting practice, met Yankee’s Manager Joe Giradi who wore their shirt throughout his pre-game interview, sat in the dugout, threw out the first pitch, received signed baseballs, ate in Legends restaurant and were presented with awards on the field. They Yankees beat the Kansas City Royals that day, and their day ended with high-fiving the team.

“They were shocked about everything – the whole day,” recalls Robin. “They repeatedly said it was amazing and awesome. The next day, they had a hero’s welcome at school.”

It all goes to show. It’s never too early to dream big, or try to heal the world with humor… one joke (and pair of Groucho glasses) at a time.

The Good Fight

Because Chemo Is Scary Enough Without Wigging Out

After her own cancer treatment, Nancy Riviere started Wig Out, a non-profit dedicated to getting free wigs to women who want one.

In 2014, Nancy Riviere is a brunette, but she’s decided one of her wigs should be blonde. It just seems more fun, and god knows she needs some fun right now. In the wig shop, she sits quietly in front of the mirror watching as the sales clerk pulls the curly, shoulder-length hair piece over her head. Riviere still has her hair, but knows that in just weeks, she’ll be bald.

Riviere, then 41, had just been diagnosed for a second time with invasive ductal carcinoma,the most common type of breast cancer. The diagnosis came just nine months after her last reconstructive surgery, itself following a double mastectomy, and two-and-a half-years after she first found a lump in her left breast.

Nancy Riviere, founder of Wig Out

But this time, she needed chemo, and it was this painful, intimate experience of shopping for a wig that led her to create Wig Out, a non-profit that donates repurposed, high-quality wigs, headscarves and hats to women across the country who’ve lost their hair during chemotherapy.

Cancer came into Riviere’s life in May 2012. On vacation over Memorial Day weekend, Riviere, who was 39 at the time, found a small, round, painful mass under her breast while doing a breast self-exam. “At the time, I didn’t go to that place in my brain, that it could be cancer,” says Riviere, a former event planner.

After a series of painful breast biopsies, Riviere learned it was, “I was lying there and crying, and the nurse was holding my hand and telling me ‘it’s going to be okay, it’s going to be okay.’ It just completely rocks you emotionally.”

So when Riviere was diagnosed the second time and told she’d have to have chemo, she wanted to feel prepared.

Riviere knew the drugs would whittle away at her hair. It would start to come out in clumps in the shower; in the mornings, she’d find her pillowcase plastered with wisps that had fallen out overnight. She wanted to be ready for the inevitable, so took a trip to a local wig shop in her hometown of Houston, Texas.

Today, remembering that first experience while she washes donated wigs in the sink of a guest bathroom in her bright and airy mid-century modern home, Riviere remembers her surprise at how little the women there had thought of the experience of women like her.

“It’s a shocking thing to try on wigs knowing you’re going to be bald.”

“The women there could not have been nicer, but the experience was scary, sad and somber,” she says, as long brown locks, blonde bobs and salt and pepper ‘dos drip dry from hangers hooked over the shower rod. “It’s a shocking thing to try on wigs knowing you’re going to be bald,” she says. “No one at the store had been through the experience herself. No one had walked the walk.”

Nancy and hair dresser when she got her head shaved for the first time.

It was then that a fuzzy idea popped into Riviere’s head. What if she could somehow help women in the same situation as herself feel different—comforted, reassured, and perhaps a little more confident and uplifted, despite the horrible circumstance they were in?

Several weeks later, Riviere sat in a barber’s chair at MD Anderson Cancer Center. She wore her signature cherry red lipstick, a mainstay throughout her treatment. It made her feel alive and put together. Her hair was patchy now, and she knew it was time to shave her head. When the volunteer hairdresser offered her a free wig, Riviere had already bought one, so instead, she asked if she could give it to her friend’s housekeeper, who had also recently been diagnosed with breast cancer.

“It changed her world,” Riviere says. “She couldn’t afford to buy a wig. It gave her the tools to face life and get back to work with pride and self-confidence. It restored her. I knew then there was really something to my idea. Something needed to be done.”

“It changed her world. She couldn’t afford to buy a wig. It restored her.”

For so many women, wigs are cost prohibitive. It’s not uncommon to shell out hundreds to thousands of dollars for a high-quality wig made of human hair, and they’re not covered by insurance. With lost days of work and stacks of healthcare bills eating away at income, many women have to make tough choices, between clothes and school supplies for their children or a wig for themselves. A wig won’t be the right choice for every woman, but studies show that hair loss, which can last for up to a year after treatment, is one of the most traumatic parts of cancer. If a wig can be the difference between a woman with cancer having the courage to face another day of treatment, and feeling alone and vulnerable, Riviere felt it should not be denied her.

Weeks after Riviere parted with her first wig, she gave her blonde number (which she never felt quite right in) to a woman she met during radiation. “It was just tears and tears, the two of us standing in front of the elevator at the clinic,” she says. The ability to help someone when they’re really on their knees, fighting for their life—that’s what helped lift Riviere up.

Nancy helps a client style her wig.

Wigs gave Riviere a respite from the constant reminder she had cancer, while Wig Out gave her a reason to keep going when she wasn’t sure she would survive. The next six months of chemotherapy–which included 33 days of radiation treatment, and several surgeries that removed her ovaries and fallopian tubes–were extremely trying, but she was motivated by her desire to ultimately help as many fellow women as possible.

Since Wig Out launched in the summer of 2016, Riviere has paired dozens of women with wigs: the non-profit currently  has 150 hair pieces, draped over Styrofoam heads and spilling out of bureau drawers, ready to donate. Riviere receives donated wigs from across the United States, washes them, pairs them with women based on a questionnaire and follow-up phone call, and mails them to the women along with a wig care kit, all for no charge.

Right now, Riviere is still working alone, but she hopes to soon expand the program. Next up for Wig Out? A dedicated office, as well as a fully-stocked van she can use to take her mission mobile, driving it to patients’ treatment facilities where women can receive a wig on the spot. “This can be easily replicated in cities across the world,” Riviere says. “I see it going there, I know it will.”

“Service to others really gets you out of your own head,” she adds. “ It’s so healing. And it takes just a little bit to help someone get back on their feet, to reclaim themselves.”


Why I Started “The Huffington Post For Testicles”

For the last two years, K. Thor Jensen has written hundreds of clickbait articles about testicles, every one for a good cause.

They say the mark of a good writer is the ability to spin gold out of straw: to take any topic, no matter how obscure or ridiculous, and turn it into compelling prose that people want to read.

I’m starting to feel like a pretty good writer, because I’ve penned hundreds of words about testicles every day for the past two years.

Sean Kimerling, a New York sportscaster who died of testicular cancer in 2003.

In 2014, the Sean Kimerling Testicular Cancer Foundation had an idea. They’d been successful doing the usual nonprofit stuff–a yearly fun run on Roosevelt Island, a charity golf game–but they wanted a new way to raise awareness for testicular cancer.

The foundation is named after a sportscaster who died at the age of 37 from the disease. I never knew Sean Kimerling, but his hustle was inspiring. After an internship in California, he dubbed 100 videotapes of his on-air work, packed them in a car and visited every station between Los Angeles and New York to ask for a gig.

He got one, in Texas, and eventually parlayed it into a weekend job manning the sports desk at New York’s PIX11, where he won two Emmy Awards. Unfortunately, in 2003 he went to the doctor complaining of back pain and was diagnosed with testicular cancer. It had already spread to his lungs, and he succumbed to infections shortly after.

Testicular cancer is the most common form of cancer in men under 25. But it’s also one of the most beatable.

Testicular cancer is the most common form of cancer in men under 25. But it’s also one of the most beatable. If detected early, before it spreads from the testicle to another body part, survival rate is a staggering 99%. That goes down if it metastasizes. Since there’s no real way to prevent cancer, most outreach involves catching it before it moves out from the testicles.

You don’t need to go to the doctor to do a preliminary screening for testicular cancer. What you do is reach down, put your index and middle fingers at the base of your testicles, and gently roll them, looking for any lumps or irregularities. It takes about a minute.

So the foundation’s goal was simple: get people checking themselves at least once a month.

The problem with their other initiatives is that they were yearly affairs. So they made a big impact, got some press, and then faded into memory. They wanted something that got testicular awareness in front of people day in and day out, to remind them to do that one minute check.

The winning idea was the Ball Report, a site that they pitched to me as “the Huffington Post, but for balls.”

With a topline like that, I couldn’t say no.

The winning idea was a site they pitched to me as “the Huffington Post, but for balls.” With a topline like that, I couldn’t say no.

I signed on with the foundation in early 2015. Together, we developed a business plan for the site. We quickly realized that a 100% testicle-focused site would run out of material pretty quickly, so we started brainstorming what would be under the umbrella. Testicular stories, sure, but also stories of “ballsy” behavior. Sports, as long as the ball was the focus of the piece. Ball pits. Energy balls. Balls of snakes. You get the idea.

We knew when we launched the site that “come read about testicular cancer every day” wasn’t going to generate a lot of traffic. So we had to balance the mission-centric content with other ball-related clickbait.

It worked.

The homepage of the Ball Report mixes cancer awareness content with clickbait-style articles.

As I write this, I’ve created 1,073 posts for the Ball Report. We’ve had some tremendous content successes, stories that have been read hundreds of thousands of times.

When a viral story about a gang member dying after spray-painting his testicles gold started to spread, I was one of the first to debunk it and trace “his” mugshot back to another story.

I wrote a dense history of the practice of “teabagging” in video games, that ubiquitous first-person shooter taunt where you rapidly crouch over a fallen opponent’s head.

I interviewed an entrepreneur who was Kickstarting a bulletproof jockstrap inspired by a particularly brutal groin shot during a UFC fight.

The powerful thing about working on the Ball Report is that we have proof that awareness can translate into action, and that can translate into saving lives.

And it’s not all testicles, either. When I work on the site, I look outside the bag to find clickable, fun stuff that I can still tie back to the mission. After I saw an old comic book ad for Madballs, the grotesque 80s bouncing toys modeled to look like movie monsters, I put together a history of their production and marketing. I also shared my picks for the best pinball machines ever made, and profiled a Florida man who claims to have made $15 million retrieving golf balls.

Lots of medical nonprofits tout “awareness” as something that they provide. But for many diseases, “awareness” is a pretty useless metric. The powerful thing about working on the Ball Report is that we have proof that awareness can translate into action, and that can translate into saving lives. Every single post comes with a bold and unmissable sidebar advertisement, a picture of a denim-clad cowboy gripping his crotch and exhorting you to check yours. And we can track exactly how many people come to our non-profit because of our ball-related clickbait.

The thing with testicles is that they’re not easy to talk about. What’s interesting about talking to testicular cancer survivors is how open they are about their illness, even though it involves one of their body’s most private parts.

I’m not the only one out there transforming testicular cancer into creative inspiration. I’ve been lucky to profile multiple people who survived the disease and came forward about it.

Canadian artist Mathieu Francoeur struggled with his treatment, having to stay out of direct sunlight because chemotherapy weakened his immune system so badly. Confined to his garage, he produced a series of paintings that used materials from his hospital stays on the canvas. A show of the work raised money to pay for his hospital stays.

Surviving testicular cancer is a crucible–it burns away the embarrassment of talking about your testicles to the world.

I was inspired by the story of Josif Nolan, a British guy who was diagnosed at the age of 14 and had one of his testicles removed. He was seriously embarrassed and traumatized about his body for years afterwards, but bit the bullet when he was scouted by a modeling agency. Now he poses–even in the nude–for multiple global brands.

Even Taboo from the Black Eyed Peas, one of the most prominent testicular cancer cases of the last few years, wrote a song called “Fight” about his journey.

Surviving testicular cancer is a crucible–it burns away the embarrassment of talking about your testicles to the world. The people I’ve written about have come out the other side galvanized to share what they learned and help prevent other people from going through it.

I’ve been writing professionally for two decades now, for dozens of different clients. I bring my best to every job, no matter what the subject. But this is more than a job to me. It’s allowed me, without suffering from testicular cancer myself, to join a fraternity of men who are using their ordeal to help other people. Each and every one of us is looking to save somebody’s life–no matter how uncomfortable it makes people–one ball at a time.

Illustration by Shannon Wheeler.


Fighting Cancer Among The Q’eqchi’

After years spent fighting for the rights of native Guatemalans, Liza Grandia is applying an anthropologist's skillset to her own cancer.

Guatemala’s second largest indigenous group, the Q’eqchi’, are a justifiably proud people. Their traditional lands constitute the only Mayan territory never conquered by the Spanish. Q’eqchi’, also the name of their language, is the most widely spoken Mayan tongue in Guatemala.

Liza Grandia today.

Liza Grandia, an American anthropologist, first fell in love with Q’eqchi’ culture in 1993 during her undergraduate studies at Yale. Going on to live with a a Q’eqchi’ family in Guatemala for four years, she returned to write her dissertation, staying for another three years.

Living with the Q’eqchi’ is not an easy lifestyle. “Petén, Guatemala is a pretty rough place to work — heat, mosquitoes, parasites galore, dust, poor roads, bad water, and little to no sanitation,” says Grandia. But she took it in stride, because she believed her work, focusing on environmental justice and agricultural conflict, was important. While there, she even helped assist the Q’eqchi’  defend themselves from land grabs triggered by a World Bank loan.

I was horrified that no one was working on these issues.

Nine years ago, after returning to the United States after seven years of living in rural Guatemala, she was diagnosed with an aggressive form of lymphoma. Grandia believes that the cancer likely grew out of her long term exposure to pesticides and other toxic contaminants found around the villages she lived in–several large resource extraction projects operated nearby.

Though there is no official registry of such data, Grandia believes that chemical exposure among the Q’eqchi’ is likely high. Grandia herself kept a detailed record of the pesticides she was exposed to. “I was interested because I was horrified that no one was working on these issues,” she says.

The diagnosis, which effectively ended Grandia’s career as a field researcher, set her on an intellectual journey investigating this issue: how chemical exposure might be quietly poisoning us. She was surprised to find that environmental factors were generally not considered in cancer diagnoses. When she informed multiple oncologists about her likely contaminations in Guatemala they were simply “not interested in the information,” she says. Her concerns have carried on into her new academic research.

“I’m interested in making that loop, the complete circle of poison back to our lives, the ways in which we inadvertently poison ourselves.”

Earlier last month Grandia was awarded a Mellon Foundation grant for $270,000 to study toxicology and environmental epidemiology at the University of California, Davis, where she is director of the Indigenous Research Center of the Americas. “I’m interested in making that loop, the complete circle of poison back to our lives, the ways in which we inadvertently poison ourselves,” she says. She also continues to work remotely with the Q’eqchi’ on a number of environmental legal cases as an expert witness.

Folks spoke with Grandia to find out more.

Much of your current work was influenced by your own medical situation. Can you please take us back to your diagnosis?

I was diagnosed with a very aggressive lymphoma the day before my 35th birthday. I had a lump spreading on the top of my chest through my collar bone that grew from zero to ten centimeters in about a month. It was actually my first year as a professor. I was in my first tenure track job and right at the beginning of the second semester. Because the cancer was so aggressive either the chemotherapy would work or I had about two months, according to the oncologist. I haven’t really led an academic life outside of that reality.

That occurred in 2008. There hadn’t been a six month period between 1993 and 2008 that I hadn’t spent time in Guatemala. Sometimes it would be two or three years on end. So that was an abrupt shift for me to not be able to go to Guatemala for the better part of five years.

What first drew you to anthropology and why does it drive you? Why did you start focusing on the Q’eqchi’?  

I was drawn to anthropology by the practicing anthropologists I met when I first went to Guatemala in 1993.  I liked the kinds of questions they asked.  They always seemed to have a quirky angle on whatever the proverbial elephant was in any given meeting room. That said, I did what no student should ever do: apply to graduate school in a field in which you’ve only taken one introductory class. Luckily for me, anthropology is my life’s calling and I landed at UC-Berkeley with the best possible mentor in the field, Dr. Laura Nader.

I was drawn to anthropology as a discipline for understanding problems of corporate globalization because I felt more than any other social science it had genuinely and honestly wrestled with its colonial past.

I was drawn to anthropology… because I felt more than any other social science it had genuinely and honestly wrestled with its colonial past.

In the four years I spent in Guatemala before graduate school, I had lived with a Q’eqchi’ family, worked in Q’eqchi’ communities, but had not yet learned the language.  For my dissertation work, I committed to this and was rewarded with so many new understandings of Q’eqchi’ lifeways and worldview. This is a continually deepening process. Decades later, Q’eqchi’ healing and ceremony is helping me understand what I am meant to do as anthropologist.

In Maya cosmovision, a good life is one in which a person finds and fills her destiny. When you get a life-threatening illness like cancer, a person tends to question everything. What’s the point of all that suffering?  What am I going to make of that experience?  It’s taken me almost a decade to understand my path forward.

Has studying the way other cultures approach illness helped you in any way handle your own?

Absolutely. I never even considered putting all my eggs in the allopathic basket.  Chinese medicine (acupuncture and qigong) were central to my recovery.  The Mesoamerican tradition of sauna has been the cornerstone of my healing of chemical sensitivities. That said, it’s also a healing modality of Europe. You find many similar healing modalities that arise in disparate places at different times. Some old Maya healers practice a kind of acupuncture with sharpened bones, and they use very similar points to Chinese doctors. So I read copiously across many medical traditions and look for commonalities or comparable success stories.

What was your initial healing process like?

I had just moved to a new town, Worcester, MA. I didn’t really have a network of support, didn’t know where to go for treatment. From the very beginning I felt that the best way to cure myself was to be very public about my cancer. Some people take it very privately, like a scourge on themselves. But I never blamed myself. I sent out an email to 300 people asking ‘What do I do?’ Through that I pieced together connections to very good doctors.

I had long been an activist and worked with social movements. I’m very good at organizing on behalf of others but I’d never actually organized for myself. I took this as ‘How do I connect the people I know and use my intellectual firepower to heal myself?’ I wasn’t going to put all my eggs in one basket. I did chemo and radiation because it was a very acute cancer, but I also tapped into a lot of alternative therapies.

From the very beginning I felt that the best way to cure myself was to be very public about my cancer.

My original surgeon in Worcester wanted to try to cut out the tumor. I found out later that surgery would have killed me because it would have delayed the chemo and caused the cancer to spread. The night before the surgery a friend convinced me not to go. I called the hospital and cancelled. The doctor actually threatened me and said if I didn’t go through with the surgery I’d never be allowed back in that hospital again. I didn’t have health insurance to any other hospital so it was a leap of faith at that point. I had not seen any other specialists. Happily I found another oncologist. For six months I underwent chemo and radiation. I have been in remission ever since.
What kind of alternative medicines did you tackle during your recovery? Did you feel more open minded about such treatments because of your training as an anthropologist?

Grandia during chemotherapy.

I mentioned saunas above. Healing is multi-layered and what works for one person at one time may not work for another. To be honest, I wasted a lot of money on supplements, though a few have been helpful. The most healing things have been the least expensive, and good, organic whole food is medicine in itself. Qigong was the cornerstone of my recovery from cancer and gave me an understanding of how to induce a relaxation response or shift the autonomic nervous system from sympathetic to parasympathetic state. When I fell ill with chemical sensitivity, for awhile, I focused heavily on detoxing and replenishing minerals. Then I worked on my lymphatic system and found old-fashioned castor oil packs and dry brushing to be transformative. I worked with western doctors to address glutathione deficiencies — glutathione is a master antioxidant and chemical exposures can deplete your store of them. I’ve always had a healthy diet, but I started learning about the brain-gut connection and probiotic foods and drinks made a difference in my cognitive function. Then I started learning about the limbic system and how to condition the amygdala not to go into flight-or-fight response so much. That is very much a work in process.

What has been your life been like in remission and how did your diagnosis change your academic and activist work?

Over the last nine years I haven’t gone six months without having a terrifying cancer relapse scare. It’s over but it’s never over. You never have a normal headache as a cancer survivor. One can never accuse a cancer survivor of hypochondria.

Five years ago I moved here to UC Davis. Given that I was in questionable environmental circumstances before the diagnosis it definitely caused me to reflect on the questionable long term exposure over a lifetime.

It’s over but it’s never over. You never have a normal headache as a cancer survivor.

What cancer researchers are finding is what they call a multi-hit model of cancer. The prior imagination of cancer was that there was this one thing that gave it to you, like asbestos or smoking gave you lung cancer. Increasingly it appears that many of the genetic transformations and things that happen at the cellular level which impair the body’s ability to repair itself can come from something that occurs over many, many steps. In fact the oncologist told me right away that because the cancer I had was so particularly aggressive, the mutation it had would have required a series of things to have gone wrong.

Is that when you made the link with Guatemala?

In my field work in Guatemala I was working with farming families. I was worried about the pesticides being used so I had been tracking them. I had a list of all the pesticides that were being used in the villages I’d lived in. I had done some initial research on that and presented a paper in Guatemala because the international organizations were really focused on biodiversity and didn’t really care about human health–there’s not a lot of information about the dangers of pesticides in Guatemala. So I was definitely aware of the connection with pesticides when I was diagnosed.

After diagnosis, with not being able to expose myself to pesticides, which, with rural fieldwork in Guatemala, there’s no way to avoid it–they stored pesticide tanks next to the bed in the hut I was staying in, for instance– it was clear I wasn’t going to be able to do that old fashioned anthropology anymore. I was thinking about how I could reinvent my work so I could be effective from my desk. Indigenous people are online and organizing in extraordinary ways, making use of digital tools. I had been thinking a lot of how I could be of use to indigenous groups facing environmental struggles without actually having to physically go. I knew that I had to learn the language of toxicology and policy, so I applied for this Mellon New Direction fellowship.

What was the link you saw between your diagnosis and your previous agro-environmental work in Mesoamerica?  

When you do chemotherapy, some of the drugs are so toxic that the nurses have to put on partial hazmat suits–an extra full gown, masks, thick rubber gloves–to actually handle the needles and the bags that they’re putting in your IV. You’re voluntarily poisoning yourself to hopefully get well. I had been, in the lead up to chemo, revising my book for publication in Guatemala about the World Bank inducing land grabs. The key legal principle which we were trying to use to stop the expansion of this World Bank project to the rest of the Q’eqchi’ Maya territory to the south was that the Bank had expanded the project without consulting the indigenous communities. They had violated the international legal principle of “free prior informed consent.”

After my diagnosis, I began thinking about that and then thinking of the possible causes of cancer, of the chemicals that we all have in our bloodstream without our consent. People in the United States are crazy about trespassing and privacy but don’t think about the things that corporations have put into the environment and then travel inevitably into our water and bodies, full circle.

I followed all the rules, like a lot of people who get cancer. But the institutions are looking at how to blame the individual rather than the… corporate economy.

I started tracking the companies that were responsible for the two main herbicides to which I know I had been exposed: glyphosate and 24-D. Monsanto makes glyphosate and 24-D was once manufactured by Monsanto and now Dow Chemical.

This was part of my externalizing the causes of my cancer. Folks have written a lot of literature about positive healing, but it sort of implies that you gave yourself cancer by thinking negatively. In the 1970s there was thought to be a type of person who got cancer–stressed and so forth. All of the American Cancer Society literature is about behavioral causes: you drank too much, you’re overweight. But I was a vegan, organic eating, exercising person–I followed all the rules, like a lot of people who get cancer. But the institutions are looking at how to blame the individual rather than the broader structural forces of the corporate economy. That’s when I began to think of the concept of “chemical trespass”, which led me to research about everyday chemicals in our bloodstreams.

What are your key goals going forward with furthering your activism and research?

I continue to do lots of pro bono expert witness work on behalf of Q’eqchi’ peoples. I think that scientists on campus have that capacity to do pro bono science work from their laboratories, if there is interest in it, but they don’t have a social connection. So I see myself as a connector. I hope to have a system and network and way of connecting groups that are facing emergency and environmental threats. They need to be able to connect with environmental scientists to get the soil, water and air quality studies that are needed to bring their cases before a judge. They need evidence, hard core evidence. Most native and indigenous communities don’t need anthropologists anymore to document their culture–they’re doing that themselves. But they do need connections to entities of power.

Top photo of a Guatemalan woman provided by Creative Commons license by Stefano Ravalli.