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How To Deal With Chemotherapy: Everything You Need To Know

So you, or someone you know, is getting chemotherapy. Here's what you need to know.

Chemotherapy. It’s not a feel-good word. It conjures up images of pale, sickly faces with shaved heads. But there’s a lot more to this cancer-killing drug regimen than its most talked about side effects. Because after you go through chemotherapy, it changes you in all sorts of ways… and while some of those changes can be unpleasant, others can be extremely positive and life-affirming.

Because nothing beats chatting with someone who can share their first-hand knowledge, Folks spoke to two cancer survivors about their experiences: Allison St. Pierre, who was diagnosed with breast cancer just after her 52nd birthday in 2014, and Eric Fishman, who was 35-years-old when he received a diagnosis of testicular cancer in 2017. Whether you’re a newly diagnosed patient looking at treatments, a friend or family member of someone with cancer, or just curious about what geting chemo is like, here’s what you need to know about chemotherapy.

Every Chemo Treatment Is Different

For starters, chemotherapy is not a one-size-fits-all drug–it’s actually a mix of chemicals (a drug cocktail, if you will) that are combined together based on the diagnosis, stage of cancer, and best course of care for each person. Although an oncologist will recommend the mix and intensity of treatment, the patient is the one who makes the final decision on exactly how aggressive they want treatment to be.

Some regiments of chemo can be extremely intense: Eric had three rounds of treatment, each consisting of a week of daily treatments followed by two weeks mostly off except a treatment on Tuesday. Others can be relatively laid back: Allison received one day of treatment a month with a month off between treatments, which is more common.

Almost Everyone Gets A Port

No, not the dessert wine. Because chemotherapy is such a potent mix of chemicals, inserting it directly into a small vein could dissolve the vein. So before chemotherapy begins, patients undergo a brief outpatient procedure to have a thin tube, called a catheter, placed directly into a large vein, often near the heart. The port is then connected to the catheter internally and has an external opening for chemotherapy delivery. Instead of a nurse continually pricking a patient to find a large, working vein, a special needle is placed directly into the port and then connected to an IV holding the personalized chemotherapy cocktail. Ports can also be used to draw blood.

There are exceptions, of course. Depending on the type of cancer and treatment used, some patients do receive chemotherapy through an IV, or get injections, or even take capsules orally. But for most patients, you’re looking at getting some hardware installed.

Every person’s chemo is different. Creative Commons photo: Beverly Yuen Thompson

What A “Typical” Treatment Is Like

For those who receive their chemotherapy drugs intravenously, they must visit a lab for each treatment. Before chemotherapy begins, a nurse will weigh the patient and take a blood sample. If their blood count is too low, treatment may be delayed until their immune system strengthens. For those with ports or a catheter, the line must be cleared before the new chemotherapy treatment is given. This can leave a bad taste in the mouth, so many patients bring mints or a strongly-flavored drink to avert the taste.

The amount of time it takes for the chemotherapy to drip through the IV and into the body can vary. Allison was typically done in two hours, while Eric needed three. Most patients will pack a “chemo bag” full of items that will provide them with comfort and help pass the time. While each bag is personal, some common items can include a large water bottle, a jacket and/or blanket, books, and electronic devices (with headphones!) to listen to music or watch movies.

Patients May Lose More Than Just Their Hair

Chemotherapy doesn’t only eliminate cancerous cells, it’s designed to kill all fast-growing cells. So not only do you lose the hair on your head, you can also lose all your body hair… and when it grows back, it may, at first, be very different than before. For example, formerly coarse hair may grow back baby fine, and once wooly legs may be almost bare. Some people even lose the nails on their fingers, or experience skin discoloration by developing splotches that look like sunspots. And while for most, these changes are temporary, some people can end up permanently changed by chemo.

What’s the trick to getting through these changes? Alison says: “Take charge!”

“When you have cancer, you feel you like you don’t have any control,” Allison explains. “My daughter and I made a party out of shaving my head. It was long, so she chopped it in stages to see what it looked like. I even had a mohawk at one point!” It can even be fun to accessorize around a newly bald head: for example, by trying out wigs with cool new hairstyles, or embracing a range of fun scarves and hats.ys to exert a bit of control.

When you have cancer, you feel you like you don’t have any control…Take charge!

Chemotherapy Will Change What You Eat

Chemotherapy causes nausea and vomiting, leading to weight loss, but that’s not all. It also changes your taste buds. Lasting up to five days after treatment, everything Allison ate had a distinct metallic flavor; Eric, on the other hand, completely lost his ability to taste after treatment. Both are common side effects from chemotherapy.

In addition, because of nausea and possible mouth sores, “heavy” foods (like burgers, pizza, or steak), sodas and sweets are often unappealing to chemotherapy patients. Many will stick to a diet of bland foods, like mashed potatoes, oatmeal, and crackers.  Luckily, taste buds often return to normal in between treatments, and once chemotherapy is complete, food will taste like food again.

Finally, when you undergo chemotherapy, you need to be really careful about where you’re buying your food. Since outbreaks of salmonella and E.coli are on the rise, patients may now be advised to avoid fresh, raw produce, which could prove deadly to a person who cannot fight off bacteria. Say so long to the farmer’s market, at least until treatment is done.

Your Life Still Continues Normally During Chemo

Most chemotherapy plans involve periods of treatment, followed by periods of relative normalcy, where no chemotherapy is had. During treatment periods, the symptoms can keep patients homebound, but in those weeks between, most patients resume their “normal” lives as much as possible.  In Allison’s “two good weeks” between rounds, she worked at her local community theater, shopped at the grocery store, enjoyed meals out with friends and went to the movies. She even remembers the satisfaction of having enough energy to clean her kitchen.

Chemotherapy Can Change Your Personality And Your Politics

For Allison, going through chemotherapy resulted in a complete mind shift. She was raised to be polite, not speak out, and to put others first. But chemotherapy made her realize that maybe she needed to spend more time advocating for herself, and speaking up when things were wrong. “Cancer completely upended my life and made me outspoken,” she says. Why? It all had to do with the feeling of being helpless during the negative side effects of treatment, and not wanting to feel that way in her day-to-day life. “I started looking at the big picture and began to view things differently. I’m a Southern girl and was taught not to talk about politics, but now I’m speaking up.”

Chemotherapy Also Changes Friendships And Provides Opportunities For New Ones

Chemotherapy can, weirdly enough, be a good time to bond with your friends, or even make new friendships.

For Eric, friends took turns accompanying him to chemotherapy treatments, and helped support his wife and children. One buddy in particular stands out. “My friend’s dad had recently died of cancer,” he recalls. “While I was going through chemotherapy, he called often to check in on me: he called more than anyone else.  We’ve become much closer now. He’s never been a mushy guy, but now he’s much mushier towards me. Even though the treatments are complete and I no longer have cancer, he still calls me often to check in. And now, it’s not just to ask how I’m feeling. Before, I was usually the one who called him, but now he calls me much more.”

Allison also made numerous new friends during her chemotherapy treatments. And not all of those friends were local. While she did attend some support group meetings, the women she met mostly older, many of Allison’s closest friends were made through online support forums for fellow cancer patients.

Staying positive and making friends is important to make it through chemo. Creative Commons photo: Komen Austin

Attitude Is Everything

Both Allison and Eric stressed that positive thinking and staying away from undue negativity was the major thing that brought them through what they call “the hell of chemotherapy.”

For Allison, taking a “media fast” was very important. Instead of watching or reading the news, she chose to read the Bible, write in her journal, walk in nature, participate in yoga classes for cancer patient, and join support groups.

Eric approached it differently. He kept his distance from negative friends and avoided as many conversations about cancer as possible. At chemotherapy treatments, he and friends would while away the time by watching funny movies together. (In fact, one time, Eric was laughing so uproariously during treatment that a woman next to him asked if he’d gotten extra drugs in his chemo cocktail.)

The walkaway from all this? If you’re a chemo patient, do whatever it takes to feel good about the world during this time; if you’re the friend of a patient, follow their lead, and be as upbeat as possible.

There Is

 A Light At The End Of The Tunnel

It might feel like chemo never ends, but it does. And life does get back to normal, eventually, even if it can take a long time.

When he received an all-clear from his oncologist, Eric says that he still didn’t feel “fully normal” partly because he still looked sick. It wasn’t until months later, when his eyebrows grew back, that he started feeling like he was really better.

Allison’s recovery was faster.  Starting just a few weeks after her last treatment, she began to see new hair, which she photographed weekly as a reminder of the progress. For her, this served as proof that she was recovering, even though it seemed slow. She created an electronic photo album called “Hair,” and as soon as she felt it was long enough to publicly display, she donated her wigs to a local cancer organization.

When your chemo ends, there can be a tendency to feel a certain degree of survivor’s guilt: to ask yourself, why did you make it, when so many others don’t? To this, Alison says that we should all remember a song from one of her favorite musicals, Hamilton.

“There’s a line in a song sung by Aaron Burr called ‘Wait For It,'” she says. “It goes, ‘If there’s a reason I’m still alive when so many have died, I’m willing to wait for it.’ I don’t know why I’m still here while others are not, but we have to focus on the positive and hang on to that.”

Creative Commons photo at top by North Carolina National Guard.

Features

Is Medical Crowdfunding Really The Answer To A Broken Healthcare System?

These three stories of individuals who used crowdfunding to raise money to pay their medical bills show that sites like Indiegogo are just one piece of the puzzle when it comes to navigating the system.

Life with a health condition can be a stressful journey, but financial woes can make it harder. In a broken health care system in which few people can truly afford to be chronically ill, many patients have to get creative. That’s why many Americans are turning to crowdfunding—raising money on the Internet using social media for promotion–to pay their health care costs, with middling success. According to Business Insider, half of all funds raised on crowdfunding platforms like Indiegogo, YouCaring and GoFundMe are used for medical costs,

Lost in the greater debate about whether healthcare crowdfunding is evidence of a broken system or innovation in action, though, are the personal stories.

Shelley Simmonds.

Fraser Simmonds was born with a rare life-limiting condition called Duchenne Muscular Dystrophy, a genetic degenerative muscular condition which over time causes muscles to waste away and die currently has no cure or treatment options. Although the Simmonds family lives in the UK, which has free healthcare through the National Health Service (NHS), not all of Fraser’s expenses were paid for: for example, the powered wheelchair he needed to socialize independently with other kids, which was not considered a “medical requirement.”

The family eventually launched a GoFundMe campaign for essential care for Fraser. And they’re doing their part to pay it forward: the family now regularly organizes charitable events to raise money for a treatment for Duchenne.


Fraser’s Mom, Shelley, explains that it wasn’t easy for the Simmonds to turn to crowdfunding. The family was always financially independent before Fraser was born, and it was hard for them to ask for help. “Having a disabled child is a huge financial worry,” she says. “People do not always understand what little financial help is given to those that genuinely need it. I would do whatever it takes to give Fraser the best in life so sometimes you have to put your pride aside.”

Yet because he lives in the UK, Fraser Simmonds is one of the lucky ones, whose medical costs are still mostly paid for by the NHS. Here in the US, though, the generosity of strangers on crowdfunding platforms can be the difference between life and death.

Amongst other ailments, Linda Ruescher lives with lupus, a chronic autoimmune disease that affects 1.5 million people in the U.S. alone. At age 64, just three months before being eligible from Medicare, Linda lost her insurance and developed a pulmonary embolism. A life-saving hospital visit left her with an astounding medical bill of $130,000, as well as out-of-pocket prescription bills that cost over $2,100 a month.

People do not always understand what little financial help is given to those that genuinely need it…

Although Linda returned to work just six days after her hospital visit, those costs were unaffordable. “I had to choose between a roof over my head and food in my belly or the medication,” she says. “I just needed to hold on three more months until I qualified for Medicare. I was sick, exhausted and terrified of being homeless,” she says. Crowdfunding was her only option, and after a social media push from her friends and family, she reached her crowdfunding goal. But it didn’t come without a personal cost. “Asking for help struck at the core of my identity,” she says. “It represented a loss of independence, a loss of ability to support myself and my needs, and even worse, it forced me to recognize and face the severity of my health condition.”

What also gets lost in the debate around healthcare crowdfunding is that money alone can’t solve many of the problems that people with chronic health conditions face. When Nicholas Emerson’s hardworking father died from a rare and aggressive form of Non-Hodgkin’s lymphoma in 2016, his absence as the sole provider for the family was sorely felt. Nicholas and his sister set up a crowdsourcing page to try to alleviate some of the strain. They met their goal, but found that money alone couldn’t fill the hole that had been left in their family.

Linda Rueschler used crowdfunding to pay her bills after a sudden embolism.

“Crowdfunding sites help to pay the bills but that’s only one aspect of care that’s needed,” he says. “Such sites can never do enough to help with all the other time-sensitive, rapidly-changing, emotional, psychological, and physical needs involved [in a sudden health emergency] that, unless you’ve gone through your own version of this, you will never fully understand.” That’s why he created Supportful, a platform that allows families to crowdsource the tangible acts of support they need from their friends and families, like fundraising, meals, gifting, volunteering, and more.

There are no universal panaceas to navigating the complicated world of chronic illness, and crowdfunding is no different. Even if you can raise the money you need through crowdfunding your medical expenses, it can only help ease the burden of having a condition touch your life, not cure it completely. Until our system evolves enough to meet the full spectrum of needs a person might face on their healthcare journey, crowdfunding will only be one piece of the puzzle.

 

Q&As

The In-Between Days Of Having Cancer

In her powerful graphic memoir, comic artist Teva Harrison shines light on "the bogeyman that is my cancer."

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When Canadian artist Teva Harrison was preparing to undergo stereotactic radiation—a medical procedure that requires the patient to be vacuum-sealed into a mould that feels like a bean bag chair—she couldn’t stop laughing. “I felt wrapped up like a tray of supermarket sushi,” Harrison writes in her graphic memoir, In-Between Days, which chronicles her life after being diagnosed with incurable metastatic breast cancer at age 37. In a black-and-white comic, a smiling cartoon Harrison lies shrink-wrapped on a hospital bed and asks her technician: “Would you mind taking my picture in here so I can show my husband how weird this process is? Please?”

This sense of humor and eye for the absurd is woven throughout the devastating personal essays and minimalist pen-and-ink comics that make up In-Between Days. That doesn’t mean the book is Pollyanna-ish—Harrison confronts head-on the heartbreak, terror, and physical agony her cancer wreaks—but that these pages contain equal parts hope and dread. “I am chock full of hope, mostly because I need it to get through every single day,” Harrison writes. The “Acts of Hope” illustrated in one comic include “wearing seatbelts in cabs; buying recycled toilet paper; 7-step skincare regimen—because who does these things if they don’t believe in the future?” Perhaps the bravest act of hope Harrison performs is that of drawing and writing about her illness, which presumes the possibility of finding meaning and connection in the midst of suffering.

Teva Harrison. Photo by David P. Leonard.

“When I was first diagnosed, I didn’t want to talk to anybody,” Harrison writes in the book’s preface. “I have since learned that it is the unspoken that is most frightening. Shining a light on my experience takes some of the power away from the bogeyman that is my cancer. I am taking my power back.” This means Harrison is unflinching in her illustrations of cancer’s grisly realities—from opiate-induced emotional numbness and vomiting to the foggy memory and vaginismus that follows surgical menopause—but also that she refuses to let pain block out light. She offers snapshots of her sustaining marriage and friendships; reflections on her family history and Jewish heritage; and childhood memories of snowball fights and summers spent floating with her sisters in “the mermaid pool,” a super-sized metal horse trough with a dedicated hose.

Shining a light on my experience takes some of the power away from the bogeyman that is my cancer.

In a society that often dehumanizes and shuts out the seriously ill—as Harrison puts it, “When we get sick, we disappear”—this portrait of living in the “in-between spaces” offers the antidote of empathy. We spoke to Harrison about the making of In-Between Days, the downsides of prevention messaging, and how to sustain hope and humor even when “wrapped up like a tray of supermarket sushi.”

“Living with this disease has changed the way I look at people around me,” you write. “I wonder what pain they bear silently.” How has your experience of compassion—your understanding of other people’s pain and suffering—changed since your diagnosis?

I don’t look like a person who has terminal cancer. I move through the world as a regular person—and yet I have all this pain and challenges I have to work through, from getting out of bed to getting where I need to be. It changed how I look at people — if strangers are cranky, pushing you on the subway, struggling to get a seat, I try to think about what might be behind that, what’s difficult in that person’s life, what’s making it harder for them to get through the world.

While you acknowledge the unrelenting pain and depression that comes with living with cancer, there’s more hope than despair in the pages of In-Between Days. Where do you find your wellspring of hope?

Pain Management.

An element of it is how I’ve always seen the world. I’ve always erred on the side of optimism and beauty and appreciation and gratitude. But I have to have hope. I think it’s the only way you can live with this sort of disease and go on living, doing the things you love. A lot of my hope comes from the firm community I have. I’m really lucky in that regard. I have good family and good friends. That goes a long way because it means I have support—it’s easier to feel hopeful when you have support.

I get hope from watching the news and seeing how many new treatments are being developed all the time. I get hope from reading stories of exceptional responders—people who have lived a really long time with this disease. Because it is possible. Maybe I will get to have a normal lifespan. I’ll get to see change that is meaningful. So long as it’s possible, there’s hope there.

How did writing In-Between Days change your understanding of yourself, your own illness, and illness in general?

Before my diagnosis, I was director of marketing for the Nature Conservancy of Canada. My job had become very much entwined with my identity. I lost that when I got sick and had to stop working. There was this chunk of me that was missing. I didn’t have the ease of identity that you have when you have the knowledge that you’re contributing to society. Writing this book helped me work out what my place is now, how I fit in as a person living with illness, and how I can still contribute to the cultural conversation. The act of writing it helped me work out in real time how I feel about what I’m going through and how to communicate it. Writing and drawing about it caused me to think about being sick or having an incurable illness in an analytical way.

“I know my cancer is genetic, but I can’t help but blame myself sometimes,” you write. “I wonder what awful thing I did to deserve to get cancer. I run through all the bad things I’ve ever done.” You’re an atheist, but still occasionally entertain the notion of illness as some sort of divine punishment for personal moral failings—a common impulse for anyone looking for an answer to the question “why me.” Why do you think you sometimes go down the road of blaming yourself or looking for things you’ve done to “deserve to get cancer?”

Cancer gratitudes.

We live in a society with so much messaging about prevention. With all that prevention messaging, where we were told ‘if you do this and this and this, you’ll be okay,’ it feels like if you do all these things and you’re still not okay, it must be your fault. That messaging is really deeply embedded in our culture. It comes, in some cases from the medical community, and also from other people. It’s a hard one to get around. Many of us feel this way. I’ve been told by many medical profs that this disease was coming for me, that it’s hereditary—but I still think, “well, I was on the pill for a few years, what about this and that,” things I did, be they moral or physical. I feel awful for people who don’t have that reassurance. I don’t know how to reconcile these feelings.

Then there’s the hyper-personal element—I’m Jewish and we have a special kind of guilt. My husband was raised Catholic and I was raised Jewish—the two primary guilty religions. He once said that Catholics feel guilty for what they’ve done, Jews for what they haven’t done.

“Friends stop themselves from sharing their problems, mumbling, ‘I mean, I have no right to bother you with my little problems. You have cancer,’” you write. “And in that moment, they’ve simultaneously raised me up and shut me out.” People often get uncomfortable and withdraw when a friend of theirs is ill. What are the most helpful things friends have said or done for you during illness?

Invisibilities.

Every cancer patient appreciates different things. For me, a big part has been offering something concrete. If someone asks, “What can I do to help?” I rarely have something at the tip of my tongue. But if someone says, “Can I bring you soup?” or “Do you need rides? I’m available x and y day”—that’s helpful. Sometimes my brain is really cloudy and I’m not able to come up with something – I appreciate people just being regular friends and telling me what’s going on in their lives, even if it feels like complaining.

But it’s really just showing up. There’s gonna be a misstep on one side or the other on any relationship. It’s more acutely felt with cancer or any serious illness. We always have to negotiate. Language is imperfect. Communication is this iterative process—we’re able to get there if we both try.  

How has this illness affected your friendships?  

With metastatic breast cancer, friendships are sometimes really brief and really bright. Because survival is so short, everyone I’ve met with this disease is trying to pack as much as they can in. We’re all living hard and bright. And that’s a special thing to experience with someone.

Which artists and writers most influence your work?

Helen Frankenthaler is my favorite painter. I particularly like her works picturing big objects pressing against tiny little narrow spaces. Writers, I love Lydia Millett and Lydia Davis—my two Lydias. Art Spiegelman. I love Maira Kalman—her book My Favorite Things.

You manage to hold onto your sense of humor during treatment — “I couldn’t stop laughing,” you write. “Having been wrapped up like a tray of sushi, I asked the technician to go into my purse, take out my phone, and take a picture so I could show my husband.” How do you make yourself laugh in the midst of cancer treatment?

Cover art to In-Between Days.

I feel like who we are when we’re well is who we are when we’re sick. If we have a tendency to laugh about things when we’re well, I think we’re still laughing when we’re sick. If we tend to take things very seriously, we do that when sick. Humor is partly a coping mechanism, a way of getting through it. Part of it is also the fact that this was all new to me, since I had no real experience with the medical industry. I was discovering things like a little kid— “This is so cool! This is amazing!” They can’t stop laughing. To a degree, I’m like that. It keeps me from going in a dark direction. I have the capacity for both, and finding the humor in something helps me to not just see how dismal it can be.

You can buy a copy of In-Between Days on Amazon here.

Q&As

Tying Together A Cancer Support Network In Rural America

When his mom died of stomach cancer, Matt Dexter formed the Christine B Foundation to make sure that no one affected by cancer ever felt alone, no matter how geographically isolated.

The fall of 2007 should have been one of the most exciting times of his life. Matt Dexter was 13 years old, starting eighth grade and excited about the prospect of high school the following year. His whole life was open in front of him.

But in October, after a series of misdiagnoses, his mother Christine was diagnosed with stomach cancer. When a dozen surgeries failed to remove the cancer from her stomach and intestines, Christine returned home and spent the last six months of her life on hospice. She passed away in April 2008 at 47 years old, eight months after her diagnosis.

It was a confusing time for Dexter and challenging time for the whole family. Dexter, his older sister, and father had to shuffle their schedules, lifestyle, and responsibilities to step into the role of caregiver for the woman who held the house and family together.

Christine Dexter’s death inspired her son, Matt, to find a cancer foundation in her honor.

“What really struck me was being a caregiver [to my mom] and having the person who gave me life lose her own life and there was nothing I could do. That time was a defining part of why I’m doing the work I‘m doing now,” says Dexter. “For me, as a caregiver, I wanted to try to understand the whole cancer experience. Having it be a struggle-free experience is really important.”

[H]aving the person who gave me life lose her own life… That time was a defining part of why I’m doing the work I‘m doing now.

In 2014, Dexter created the Eastern Trek for Cancer, a relay run to raise money to support the cancer community in eastern Maine and later established the Christine B. Foundation, in honor of his mom. Dexter spoke with Folks about how his mother inspired him to advocate for cancer patients and families, the importance of community, and his vision for creating a model for cancer care in rural communities.

This interview was edited and condensed for publication.

Tell us about your mom. What was she like?

My mom was the go-to mom in the neighborhood. She would always say yes to everyone and everything—hosting fun events, inviting kids over for movie night, working with schools and stepping in as a substitute teacher. My favorite story is that she was the crazy woman on the highway who gave the tollbooth workers candy to say thank you and put a smile on their faces. She was a social worker, helping families and children at-risk and, after having two children, became a full-time mom. She was very outgoing and treasured her relationships and friendships.

How did things change after your mom got sick?

It was this trifecta of madness at the time. I was entering high school in the fall, which in and of itself was a lot of stress. My sister was starting college, and my dad had to shift positions at work to be home more. All three of us had to adjust our lives, not only due to the natural transitions of life but to stay together and not totally fall apart as a family.

It was tough for my father and I to keep as strong of a relationship as I had with my mother. Especially with my mother’s misdiagnosis, I wasn’t fully aware of what her surgeries were or what a misdiagnosis really meant. At the time, I thought that you go to the doctor and they fixed it. I didn’t understand why she was not OK and why she now no longer with us. I blamed the doctors and I blamed my father. I had a lot of build up anger. I think it was hard for people to speak my language and break things down to help me in a way that I wanted to accept.

At the time, I thought that you go to the doctor and they fixed it. I didn’t understand why she was not OK and why is she now no longer with us.

After your mom was diagnosed and in treatment, was there a support network you could draw on?

We had a lot of grassroots support. My aunt—my mom’s sister—came up from the Cape and spent five or six weeks with us, which helped keep the household together. Many of our neighbors, whom my mom had supported in the past, came out to support my mom and our family. For example, for about five weeks, a neighbor always cooked and delivered a hot meal to us, Monday through Friday. It rotated around the neighborhood and it was the always the best food: an appetizer, main course, dessert, and different drinks.

Being 13 at the time, I didn’t really process the value of this support. But looking back, it certainly made a huge difference and helped me realized how far smaller initiatives can go to make a difference, what you can do with a lot of individual voices, and the impact one voice can have when you’re working together.

What’s the mission of the Christine B. Foundation?

Our mission is to build a community of support for those in eastern Maine affected by cancer. From the beginning, we knew that we wanted to support those facing cancer, both patients and families. We didn’t want to focus on research or treatment. We wanted to provide immediate support.

Our mission is to build a community of support for those in eastern Maine affected by cancer.

Eastern Trek brings together a team of 12-15 young adults for a seven-day, 300-mile relay run from Portland, Maine to New York City to raise money for the foundation. Why running?

The direction I took wasn’t the healthiest in terms of processing the loss of my mother at such a young age. Leaving my hometown and everything i was used to, moving 300 miles north, starting college—I used running as a way to stay grounded and really process where I wanted to go with my life. I love the way running helps people not only with their physical health but their mental health as well. It can be a tool to process certain stressors and a platform to build community and to raise money. We started with the Eastern Trek for Cancer in 2015.

The Foundation focuses its work on eastern Maine. Why?

I went to the University of Maine in Orono. I thought I would follow in my mom’s footsteps and go into social work. I was also very into the Maine culture. It was so different compared to where I grew up [outside Boston]. I did some volunteer work to get more involved with the Maine community, specifically eastern Maine and it hit me during my sophomore and junior years that I could do good here.

There’s such a need in eastern Maine to support those affected by cancer. As we started planning year two of the Eastern Trek for Cancer, we listened to people in the Maine community, specifically Penobscot County, and Downeast, near Bar Harbor.

I love the way running helps people not only with their physical health but their mental health as well. It can be a tool to process certain stressors and a platform to build community and to raise money.

Being a rural community, there are so many barriers and lack of support to help people utilize care. For example, people have to travel upwards of 100 to 120 miles round-trip just to receive treatment. There’s also a higher incidence rate here compared to other states and the average household income in Maine is relatively low. We felt like there was no other place in the country that needed support like here. That’s how we shifted gears and began thinking about how we could leverage the resources in the community to help the people of eastern Maine and also the people traveling to the area to receive treatment.

What are the Foundation’s programs?

We empower people and provide services to people. The empowerment component right now is through the Eastern Trek for Cancer. It’s more than just a 5K on a Sunday morning. We empower young adults to make a difference by becoming part of the cancer community, using running as a platform, and raising funds and awareness for our mission. We have two scholarship opportunities, a $2,000 scholarship and a $500 scholarship, for undergraduate students affected by cancer. We also host service events like a Cancer Survivor’s Day and hand out comfort bags to patients at different cancer centers.

Matt Dexter at the Christine B Foundation Survivor’s Day.

Your vision is a struggle-free cancer experience. What does it look like?

I’ve definitely been in meetings and discussions where people say that’s a ridiculous vision. But we want to work ourselves out of a job. The struggle-free cancer experience is really about trying to reduce the burden that people face when they experience anything to do with cancer. We want to make sure it’s as easy and as simple as possible for people to navigate through the cancer journey and get the support they need—navigating the finances, understanding treatment options and what the doctors are saying, finding transportation and housing options. We also want to educate people to be proactive about their health and hopefully avoid a cancer diagnosis in the first place, whether that’s through diet or health or other wellness opportunities.

We want to make sure it’s as easy and as simple as possible for people to navigate through the cancer journey and get the support they need…

Do you think this would have changed your experience?

I don’t know. I think it’s hard to look back and see what would have worked and what didn’t work. Support depends on the community you live in—neighbors who can help, transportation options, and support services. I had dinners brought to me and I had supporters. I hope that through our work, other children who might happen to be entering high school and just lost a parent to cancer can navigate around all of the opportunities [and feel supported].

What’s your vision for the future?

We want to connect the cancer community as much as possible and create a community of support for anyone affected by cancer. We want to leverage all the other providers in the community to help them help more people, to support transportation assistance to make it as easy as possible for patients to utilize care, and to make housing options more readily available for those traveling to the area.

Hopefully, 10 years down the road, we can serve as a precedent for rural communities for building and investing in a community of support for their cancer community. We want to identify what works in eastern Maine and share our successes and collaborate as much as possible with other rural communities.

Essays

The Happy Little Life Club

The last lesson my mom taught me before she died of stomach cancer was the secret to living life to its fullest.

“How am I going to raise my kids without you?” I asked clenching my hands tightly in my lap. “They’re still babies. I need you. You’re not done yet.”

I shifted in the plastic-backed wooden chair and looked around the kitchen, as if taking it in for the first time, or, perhaps, the last. The mirrored ceiling fan above our heads spun in circles, calm and steady, just like it did for countless meals growing up.

It was hard to look at her; she was different. She smiled at me in a way I’d never seen before.

“You will be fine,” she said. “You’re a good mom.”

She was serene and at peace with her decision, but we were not. She’d already moved on, but we hadn’t.

It was mid-November 2014 and her four grandchildren were playing with their great-aunt, two rooms away. In the kitchen, we could hear their giggles and gleeful screams, along with the popping sound of a push toy and a Disney movie playing in the background. My mother would usually never miss an opportunity to spend time with her grandchildren, but nothing about what we were going through now was usual.

She was serene and at peace with her decision, but we were not. She’d already moved on, but we hadn’t.

The air in the house was heavy this time. Heavy in a way it had never been before. Even during the three previous times where she’d faced cancer, there was hope. This time, all there was was dread, thick and looming.

Yet through all of this, my mother sat across from us, completely content. The morphine had begun to take effect, easing her of the unbearable pain of Stage IV stomach cancer. This time, we all knew, death was going to win, but only my mom seemed at peace with this. Perhaps she felt some peace with the fact that she had chosen to leave on her own terms, by coming home and saying goodbye to friends and family. But part of me wondered if the morphine had transformed her personality.

Clockwise from top-left: my sister, me, and my Dad, saying our final goodbyes to my Mom in November 2014.

A pessimist by nature, my mother was not usually the serene, peaceful woman she was now. As her brother said, she was normally staid. Ask anyone who knew her how she’d face her death, and they’d tell you the same thing:  Yes, she’d have emotions, but not these. She’d be angry. She’d be sad. She’d be jealous of those who were able to watch her grandchildren grow. She wouldn’t smile. She wouldn’t be at peace.

All sitting together at the table, my mom faced me, my sister, and my dad, saying her goodbyes while she was still lucid. I was directly across from her, and her stillness, her peace and her sense of calm as she said goodbye to the three of us flooded me with emotions.

Her stillness, her peace and her sense of calm as she said goodbye to the three of us flooded me with emotions.

She never sat still like this, ever. She was a doer, always a doer. She’d clean the baseboards while we spoke on the phone. She weeded her grass by hand. Weekly. She purchased and planted flowers at her synagogue. She took long walks and bike rides; she exercised daily in front of the TV. She didn’t take the time to sit and enjoy the calm peacefulness of a warm spring morning, dew still on the grass, birds singing and the sun warming the earth. She was moving. Keeping busy at all times. There was always something for her to do.

But now, facing death, she was stiller than I’d ever seen her. And I didn’t know what to think about it. Mom seemed to have no regrets about ending her life, even though she was leaving so much behind.

A few months before, a little over one year into what would be a contentious three-year divorce, I’d taken my children to visit family friends at their beach house. One night, after the children had gone to bed, I asked what my friend’s network name “hllc” stood for.

“It stands for happy little life club,” he told me. He’d taken up that motto after his divorce. It was how he chose to live his life. That was nice, I thought, but definitely not my life. Yet that phrase stuck with me for some reason, never too far from my mind.

As I sat observing my mom watch her family tearfully tell her goodbye, “happy little life” re-entered my mind. Is that what she had, I wondered? Even though she was leaving so soon, abandoning the life she worked so hard to create? Was she really happy? Was she really content leaving her life? Her own “happy little life” that was still in progress?

We each took turns telling my mom how we felt about her, what we’d miss, how sorry we were that this was happening to her. Our eyes were wet, but not hers. The only thing she gave back were smiles and small words of comfort.

The next few weeks would be challenging. Death refused to take my Mom quickly. As we waited for her to pass, I found myself thinking back, over and over again, to our final conversation. The peace from which she spoke—her acceptance of death—impacted me in a way I couldn’t quite understand, but kept coming back to.

In the three years since my mother died, I think I have finally come to understand what my mom communicated to me that day. When we sat down together at that table, my life was full of stress and sadness, but since then, I’ve divorced, returned to my writing career, and worked hard to create a life that I was proud of; a life I could accept leaving with nothing left undone or unsaid at the end of the day.  I’ve challenged myself to do things that bring me joy, knowing that life could end at any moment.

So today, my mother’s final serenity make sense to me. The woman who had moved through life as if it were a to-do list of tasks had finally checked off every last one, and was free to rest. The woman who never sat still finally did.

That woman, my mother, had her happy little life, just in her own way.

And now, I know she was trying to tell me, it was time to make mine.

Essays

How Comedy Kept Me Going Through Chemo

Stage IV Non-Hodgkins' lymphoma was the last place I thought I'd find comedy again, but laughing gave me power over my diagnosis.

Growing up, I was that kid. Deigned the official class clown each elementary scholastic year, I soon found myself promoted to in-house comedian midway through junior high — a pope-job I kept through high school and a little beyond. Making other people laugh was addicting. It’s something I’d wake up and look forward to every morning. Then, as I got older, I became more serious, as many people do. I stopped making so many jokes. But a good sense of humor is a gift, and it wasn’t until I rediscovered it during treatment for stage IV non-Hodgkin’s lymphoma that I discovered that gift’s true power.

Cruz Santana.

Because my disease was so advanced by the time of my diagnosis, I ended up spending almost six months shut up in a hospital room, often in terrible pain. Every three weeks, a cocktail of poisons was pumped into me, with the hope of drastically shrinking the malignant tumors housed inside my lymph nodes. I hurt every minute of the day before chemo even began. Once it started, recovering from each session was a living hell. It was the last place I ever thought I’d find comedy again. And it was what I feel helped save me.

A good sense of humor is a gift, and it wasn’t until I rediscovered it during treatment for stage IV non-Hodgkin’s lymphoma that I discovered that gift’s true power.

It was pain that brought me to the doctor in the first place. After eight years of ignoring swollen lymph nodes, I awoke one morning and found my left leg ballooned to twice its normal size. An untold number of scans, biopsies, and follow-up visits later, my oncologist — ever the realist — gave me a detailed mental picture of what I could expect in my next six months.

It wasn’t pretty. Starting on day one, I’d have a series of procedures in preparation for receiving chemotherapy. Among the items on the list: A central line would be surgically inserted through my chest into my subclavian vein leading into my heart. Then they’d pump me with drugs that are so toxic, they have to ship some of them in glass bottles, because they’d eat through the bag. According to my doctors, I would experience nausea, discomfort, and some disorientation.

“Will any of it hurt?” I asked.

He was blunt: “It will. You have non-Hodgkin’s lymphoma. And you have a lot of it. But we’ll manage the pain — do all we can. It won’t be bad at all.”

Liar, liar, pants on fire.

All told, on the first day, I had six procedures, including my first ever chemotherapy infusion. When I came to, my chest hurt first: I could feel every bit of whatever form of sorcery had taken place under my skin. Then my leg started aching, thanks to a blood clot they’d discovered. Finally, the rest of me joined in. My skin felt like it’d been covered in bruises. Simply running a hand over my arm sent a bolt through me. Nurses eventually appeared in my doorway armed with syringes of this-and-that, and, oh yeah, pain medications.

Jokes built up beneath the surface. I could hear my mind running through the ways in which being confined to a bed wearing grippy socks and a revealing gown was beyond hilarious. But it didn’t feel like the right time for such a joke, so I held it in.

As the treatment continued, my pain increased in intensity. I was eventually issued my very own PCA pump set to deliver a dose of pain meds every eight minutes with the push of a button. It was enormous. As this Everest of medical-doo-dads wheeled past me, complete with a gigantic LCD screen and looking like the biggest television I’d ever had in my life, my guard went down, and I quipped: “Now, are the dirty channels free on this thing? No? How ‘bout HBO? Still no? Okay, tell ya what… Whose post-coital sandwich do I have to make to make that happen?”

The poor techs about died laughing. I had the room rolling in minutes, and their energy lifted my spirit. With that, strangers became family. Their joy wrapped itself around me, held my ailing body, and loved me through my agony. I can’t even begin to describe how much that helped.

And so it went. Every few weeks for six months, my body was poisoned  The PCA pump took the edge off the painful aftermath, and that’s when I let my guard down, and started cracking jokes to my nurses, doctors, and anyone else in the room who would listen to my twisted sense of humor.

“You should write some of those down, girl,” my nurse suggested during a late-night pow-wow-slash-chemo-sesh.

“Why? They’re not really mine once I they leave me, you know?” I replied. It was my idealistic, self-deprecating side talking. But I started thinking about it. Maybe I should write down my jokes. Maybe they’d help make my kids laugh one day, long after this was over. So I started writing them down, filling composition books with my quips and gags, that went home with me at the end of each stay.

Rediscovering my relationship with humor wouldn’t have happened were it not for my cancer diagnosis

Months later, channeling Fester Addam’s countenance and hairdo, I showed up at a local comedy club for open mic night. Filling out my entry, I hovered over the box labeled “Type of Stand-Up Routine,” and paused, trying to think of something clever. Finally, I gave up and wrote: “The cancer-patient’s kind.” When it was my turn, I was nervous at first as to how my jokes would go over: after all, many people don’t think cancer’s very funny. But my routine killed, and I was even invited back a few times.

A page from Cruz Santana’s journals.

These days, I often revisit those 18 composition books, as if they were a stack of Mad Magazines for the terminally ill. They continue to inspire me: in fact, I recently wrote a speculative pilot script for a dark television comedy based on some of the jokes I wrote down during chemo. And now, as I face a new cycle of chemotherapy sessions, and a bone marrow transplant, I find myself turning to comedy again to help me survive.

Rediscovering my relationship with humor wouldn’t have happened were it not for my cancer diagnosis. Getting sick stripped me of everything–my clothes, my hair, my health–but my sense of humor not only remained, it came back with a vengeance, comforting me and giving me power over a foe I cannot see, but can beat. Especially if I keep laughing at it.

Profiles

Space, Time, and Turmeric

After survivng cancer, James Beard award-nominee chef Will Goldfarb moved to Bali, and opened a restaurant in paradise.

Bali is a magnet for soul-searchers, yoga and wellness practitioners, and expatriates bent on reinvention. The extremely lush island in Indonesia that transformed Eat Pray Love author Elizabeth Gilbert from a melancholy divorcee to best-selling author and happily married wife worked its healing magic on renowned New York pastry chef Will Goldfarb.

Room4Dessert, the avant-garde dessert and cocktail bar in Soho where he was the chef and partner, opened in 2005, and won him a James Beard Best Pastry Chef in America nomination for his artistry. It closed two years later, despite its popularity, after Goldfarb’s health issues first arose. But who said life has no second acts? The second Room4Dessert opened in 2014 in Ubud, Bali, where his wife always dreamed of going, after his bout with cancer.  Trading the asphalt jungle for the real jungle and kowtowing to no one, and the gritty Type A ethos of the Big Apple for the tranquillity of a place many equate with paradise, Goldfarb found the Hindu island ideal for his needs.

“Bali is the perfect place for recovery,” he said. “Space, time and turmeric.”  Each day he drinks Jamu, the local remedy based on turmeric, tamarind, honey and lime; along with a green juice and a bottle of coconut water.  A far cry from the life of the endless espresso.

“Bali is the perfect place for recovery,” he said. “Space, time and turmeric.”

When he first arrived in Bali, Goldfarb tired easily. Then, he began to recharge, and take charge of his career in a way he had never done before, as Bali’s fabled life-giving qualities seeped into his veins.

“Since moving to Bali, I have been able to focus on all aspects of well-being.  For the first time in my life I have given serious thought to my diet and rest habits, and the results have been surprising,” he added.  The daily routine of subways and traffic jams have been replaced by pilates and frequent steam baths at a local picturesque spa.

Will Goldfarb, plating one of Room4Dessert’s signature dishes.

He began leading the pastry team at Ku De Ta, a popular restaurant in Seminyak, an upscale beach resort area that some call the Beverly Hills of Bali. He worked with Ku De Ta to add a new floor for a second restaurant with a dessert laboratory where he could experiment to his heart’s content with Bali’s exotic bounty of tropical fruits, herbs and spices. Called Mejekawi, it opened in 2013.

His inventions began to flow fast and furiously. Bubbles concocted from torch ginger, a vivid red showy flower. A meringue from palm sugar, the caramelised nectar of the coconut palm. A pandan panna cotta, where the custard-like Italian dessert was flavored with pandan leaves, a tropical plant widely used in Southeast Asian and Indian cooking.

But Room4Dessert always lurked in the back of his mind, as unfinished business he needed to tend.

In Ubud, the cultural capital of Bali, a café closed and Goldfarb decided to open its 2.0 reincarnation with what he cheerily admits was “zero” budget. Home furnishings were needed to fill up the room, nearly five times the original New York’s location in size. Recycled metal was used for the outside door and inside. Local artists, including the restaurant’s original hostess, were asked to contribute art.

Will Goldfarb

His nine-course dessert tasting menus and selection of cocktails and fine wines became a hit among locals and tourists. Whimsical creations, like Caramel Tea Brulee with cardamom and black tea, and playful names danced across the menu, like Ghostface Keller (wood-roasted papaya, apple tatin, doughnut, cocoa nibs and Reblochon cream from the soft raw cow’s milk cheese from France), whose name alludes to both the Wu-Tang Clan, the New York hip-hop group, and Thomas Keller of French Laundry fame in Napa.

The secret garden restaurant features more casual fare, inspired by Goldfarb’s global travels, including his stint at elBulli (the three-Michelin-star restaurant in Spain, now closed), and late nights at L’Hort D’En Minguets in Roses.  Room4Dessert helped develop the booming food scene in Ubud.

Goldfarb has always been determined with a never-say-die attitude. His resilience after hardship or rejection is an inspiration to us all. (It’s no accident he named his line of pastry flavorings and powders WillPowder.)

“I like to think that I have been given a second chance.  There is no way I will let it slip through my fingers.”

“I like to think that I have been given a second chance.  There is no way I will let it slip through my fingers.”

He once joked at a TEDx talk in Ubud in his first job in Paris, he was pushed aside due to his awkwardness, with remarks like, “It’s better if you’re not helping.” While working towards his Le Cordon Bleu diploma, he was warned, “Try something else.”  After several advances to elBulli in Spain, whose chef-owner Ferran Adria was compared to surrealist artist Salvador Dali for his creativity, he persevered, and won an unpaid stage position in its pastry department.

“Hopefully, 2018 will show how some of my hard work is paying off,” Goldfarb said modestly. No kidding: his first cookbook will be published in the spring by Phaidon.  The title: Room for dessert.

Essays

The Dark Side of Facebook Support Groups

I joined a Facebook group to help me cope with my husband's cancer diagnosis; instead, I was told to divorce him. Good Facebook groups are out there, but you have to know what to look for.

Last year, a woman who didn’t know me told me to leave my husband. And so did a large handful of her friends. My husband hadn’t done anything wrong to warrant that response, except be sick, and neither did I—all I’d done was ask for help. In a Facebook group specifically designed to help people.

Earlier that month, the two of us sat in a neurosurgeon’s office, watching a team of doctors go through his MRI results and point out anomalies. Roughly translated, their whole spiel added up to this: “You have two brain tumors and we can’t do anything about it. Sorry, pal. Come back in six months for another MRI.”

We spent the rest of the day mostly in silence, trying to process what the doctors said. The next week, I hunted for resources and found a Facebook group dedicated to supporting spouses of people diagnosed with brain tumors.

I was completely pumped to make my first post. I thought the group would be good for me—I’d have a place to chat with people in the know about coping strategies, learn how best to minimize any negative impact on my husband’s health during our daily activities, and have a place to share my frustrations if needed. Full of a perhaps naïve but genuine excitement, I posted, explaining our situation (“My husband was recently diagnosed, and now we’re in a wait-and-see period of MRIs every six months.”) and asking for help (“What can I do to make this easier for him and be sure I’m not triggering any anxiety or depression when we talk about it?”).

And then that woman told me to leave my husband.

I was disgusted that so many wives were advocating for me to abandon my husband, when all I wanted was to both help him.

Her spouse apparently was in a wait-and-see period too. His diagnosis was all he ever thought about, and it was making her life hell, she said, because they never did anything fun anymore and lived in a black hole of brain tumor depression. She wished she had the money to divorce him. Well, I explained, I’m sorry about her issues, but I’m not looking to leave my husband—I just want advice on how to be the best support for him I can be.

She didn’t respond again, but it appeared that her willingness to bring in so much negativity sparked something in the other women in the group. I opened Facebook the next day to a flood of comments agreeing with her. These spouses told me it wasn’t worth it to stay, it’s more work than I could imagine, and don’t I want to move on to something else: that fairytale marriage with no problems that so many people dream of? I’d never get it if I stayed with him.

I was disgusted that so many wives were advocating for me to abandon my husband, when all I wanted was to both help him and find support of my own.

Meanwhile, my husband’s diagnosis expanded to include hyperacusis and tinnitus, which may or may not be caused by the tumors; we still don’t know. Relatively little research has been done on hyperacusis, which causes physical pain at certain sounds, volumes, and wavelengths. This was new territory for both of us. I decided I’d try another Facebook support group, just in case the first one was a weird vortex of negativity.

It wasn’t. I saw the same terrible advice coming from people in the new group.

One said her spouse’s hyperacusis was so bad that she couldn’t do anything but sit quietly on the couch, a virtual prisoner in her own home. She’d started an affair as some sort of warped coping strategy. Others chimed in, saying yes, if you can’t deal, just move on. I stared at the computer, mouth gaping, becoming angrier and angrier by the minute. It’s like a drug, that anger; one person in the group lets it out and it sweeps through everyone regardless of the reason they’re in the group to begin with. These women were angry about their spouses’ conditions, which in turn made me angry at their callousness toward it. It’s a vicious cycle.

These women were angry about their spouses’ conditions, which in turn made me angry at their callousness…

Around the same time, I was in a tiny argument with a friend of mine. Her sister recently became engaged to a wonderful man diagnosed with a terminal disease. My friend told me she would have left him. It was her life too, she said, and she didn’t want to waste her life on something like that.

I told her exactly what I told the women in the brain tumor group: My husband’s diagnosis does not define him. It does not change how I feel about him. What kind of partner would I be if I bailed at the first sign of distress?

Back in the first group, I hoped my response-by-manifesto of sorts would have a positive effect, so I stuck around for a bit to see. It didn’t. All I saw was more women telling people to leave their spouses and get out while they still could. I waited (with decreasing optimism) until I couldn’t take it anymore, and then checked out.

By the time I finally left both groups, I was depressed, deflated, and even more worried. My experience, though, appears to have been a fluke. The reason I signed up for these groups in the first place is because I heard how helpful they can be from friends who belong to their own Facebook support groups. I was shocked enough by what happened that I even floated the ridiculous idea that someone was angry with me and following me into all my groups, just to leave unhelpful comments.

Since my fallout with the spouse support groups, I’ve actually found one that’s beneficial—but it’s one for my own circulation disorder, not one for people married to someone with the disorder. A nonprofit research association runs it and often shares new related studies and breakthroughs. I’ve also learned a few tricks for navigating the Facebook support communities, and making sure you find one that’s in line with what you need.

My husband’s diagnosis does not define him. It does not change how I feel about him.

Look at the posts and comments already there first. That way you can gauge how helpful the responses are and whether the information being shared would be useful to you. Try to find a group organized by a nonprofit association or research committee. Here, you’ll find more fact-based advice and concrete examples of ways to cope, and there’s generally a team behind the management and moderation of the group.

Perhaps my biggest suggestion, though, is to join a group focusing on the condition itself, rather than one focused on supporting others who are connected to someone with the issue. What better way to feel like you can be effective in your coping strategies than getting those strategies from the sufferers themselves?

As far as my husband, his prognosis is still undetermined. We still go back for regular MRIs to be reminded that, yes, that thing there isn’t supposed to be in his brain. But hey, it’s stable, so we should be happy! He still struggles with his hearing issues because no doctor has been able to give us a good solution or even a way to manage it.

I still have no intention of leaving my husband. But the more I look back onto my experience in those groups, the more I start to understand the mindset of the women who did leave. Not because that’s how I feel, but because I know how excruciating it can be to watch a suffering partner, and to know that one day, you’ll probably lose them to the same unseen monster you stare at every day. It’s not something everyone can handle—it’s not something every marriage can handle. And for that reason, I truly wish them all the happiness they can get.

Histories

Sick and Tired

Fannie Lou Hamer was one of America's most important civil rights icons. But her health issues show that racism isn't just a social disease, it's a physical one.

Located in Mound Bayou, Mississippi, a town founded by former slaves, the tombstone of Fannie Lou Hamer features an unusual inscription. Bordered on each side by urns overflowing with flowers, the Civil Rights icon’s gravestone doesn’t just include the date of her birth (October 16, 1917), or the date of her death (March 14th, 1977). It also features her most famous quote–“I’m sick and tired of being sick and tired”– a phrase she coined during a speech made alongside Malcolm X, before an audience at Williams Institutional CME Church in Harlem on Dec. 20, 1964.

While the quote originally referred to the centuries-long fight for black Americans to be treated with respect and dignity, it could very well have been a literal acknowledgment of her health struggles. Fannie Lou Hamer was sick, and she was tired. At the age of 59, she eventually succumbed to complications of heart disease and breast cancer, but not before helping move race relations in America forward. Her life was a testament to how society, including the healthcare system, have failed black people.

American civil rights leader Fannie Lou Hamer  testifying before the Credentials Committee at Democratic National Convention in Atlantic City,  August 22, 1964.

Hamer is most noted for her valiant fight against Mississippi’s oppressive power structure. In 1962, she joined 17 others at an Indianola courthouse to register to vote.“That happened because I went to a mass meeting one night,” she writes in her autobiography, To Praise Our Bridges. “Until then, I’d never heard of no mass meeting and I didn’t know that a Negro could register and vote.”

That meeting, she said, was conducted by leaders of the Student Non-Violent Coordinating Committee (SNCC). When they’d asked for volunteers to register the next day, she raised her hand. Although there were violent efforts in Mississippi at the time to oppress the black vote, Hamer wasn’t afraid. “The only thing they could do was kill me and it seemed like they’d been trying to do that a little bit at a time ever since I could remember,” she wrote.

“The only thing they could do was kill me and it seemed like they’d been trying to do that a little bit at a time ever since I could remember.”

Over the years, Hamer traveled through the state teaching black people to read and write in order to pass dubious literacy tests that prevented them from voting. She was arrested, beaten, and shot at throughout the course of her activist work. In June 1963, she was beaten so badly in a Winona, Mississippi jail that she suffered permanent kidney damage and was nearly blinded.

In the summer of 1964, she spoke to the Credentials Committee of the Democratic National Convention in Atlantic City. There, she represented the Mississippi Freedom Democratic Party, a group challenging an all-white delegation from Mississippi  filled with fervent segregationists. Upon telling her story about trying to vote in Mississippi, President Lyndon B. Johnson himself called an impromptu press conference to force her to stop speaking during the televised hearing. The effort backfired spectacularly; Major networks would later play her testimony from the previously-preempted newscast. Hamer could not be silenced.

She spent the rest of her life fighting for voting rights and to close the gap of economic disparity in Mississippi. The political oppression of the time was not the only system Hamer struggled against in her lifetime, though. She was also a victim of the healthcare system.

In 1961, Hamer went to a Sunflower County hospital so doctors could remove a uterine tumor. She left without her reproductive organs. The procedure–which she dubbed a “Mississippi appendectomy”–was part of a concerted effort within the state to reduce the local black population by sterilizing men and women of African descent without their knowledge or consent when the opportunity medically presented itself.

Unable to have children, Hamer was devastated. To be a poor, black woman in the rural south, there wasn’t much outside of the ability to reproduce that she could claim as her own without the threat of having it taken away, according to Chana Kai Lee in For Freedom’s Sake: The Life of Fannie Lou Hamer.

“The impact of this [tragedy] found its way into her political thoughts,” Lee writes. “During the hearings, Hamer raised this issue as if it was an afterthought. However, she may have raised it last because it was something that bothered her most out of all the other horrible experiences that typified her life. Nevertheless it stands out amidst the rest of her testimony, for not everyone in the movement regarded sterilization as a political concern of their work in Mississippi. Clearly Hamer did, and she spoke about it.”

“Just because people are fat, doesn’t mean they are well fed,” Hamer pointed out. “The cheapest foods are the most fattening ones, not the most nourishing.”

Since she grew up in malnourished poverty with no access to preventive health care, Hamer understood that determinants of health— your environment, your social status— would predict health.  She advocated for better health education in local black communities, even arranging for nutritionists to come speak about the best ways to have a balanced diet while living in poverty. “Just because people are fat, doesn’t mean they are well fed,” Hamer pointed out. “The cheapest foods are the most fattening ones, not the most nourishing.”

Fannie Lou Hamer could be fierce, but her years of advocacy took their toll on her health.

She was even an early advocate of what might be considered the precursor to the local food movement, creating the Freedom Farm Cooperative as a way of promoting the value of eating foods raised by people’s own hands. While looking for money to finance the cooperative, she wrote in a 1971 letter to the Field Foundation in New York City: “Freedom Farm Corporation is working. Its purpose of feeding people, on one hand, is the essence of humanitarianism; but at the same time it allows the sick one a chance for healing, the silent ones a chance to speak, the unlearned ones a chance to learn, and the dying ones a chance to live.”

A lifelong civil rights crusader, Hamer’s health woes aren’t an outlier. Many activists before and after her experienced poor health, including heart disease and high blood pressure, exacerbated by the stress of fighting systemic racism in the country.

Following his death in 1968, an autopsy confirmed that Martin Luther King Jr. had a prematurely aged heart. Some close to him attribute an ailing heart to the ongoing stress of the civil rights movement.

Racism isn’t just a social disease. It’s a physical one.

In a PBS documentary, Citizen King, his biographer Taylor Branch proclaimed: “The movement took a huge toll on him. When they did the autopsy, they said he had the heart of a 60-year-old, he’s 39. So yes, it took a big toll on him, and he was constantly fantasizing about getting out of the movement.”

These issues continue today.

Civil rights leader Martin Luther King Jr.’s activism might have cost him his life even without his assassination: the stress of fighting racism had prematurely aged his heart.

New York activist Erica Garner, daughter of Eric Garner—who died at the hands of police in 2014, a brutal death that helped kick off the Black Lives Matter movement— died of a heart attack on December 30, 2017. After years protesting the systemic brutality that police routinely deploy against black men like her father, she had an enlarged heart.  In an interview for a web-based show just weeks before her death, she talked about the stress she and others feel while working as an activist. “I’m struggling right now from the stress of everything  because the system, it beats you down,” she said.

Racism isn’t just a social disease. It’s a physical one. Recent studies have shown that perceptions of discrimination cause great harm to the body when its pervasive. The stress of a racist or discriminatory act often yields slower declines in cortisol levels throughout the day. This can lead to obesity, depression, chronic illness, a weakened immune system, and even death.

After a life fighting against racism, Hamer was afflicted with all of the above. The cumulative impact of grief, trauma, and injustice is widely believed to have cut her life short.

In 1972, following continuous activity including a failed state senate race, her body gave out. She collapsed from what was described as “near nervous exhaustion,” according to Kay Mills, author of This Little Light of Mine: the Life of Fannie Lou Hamer.  She never really recovered. In early 1977, she was hospitalized to be treated for breast cancer, diabetes and heart disease.

A friend, Unita Blackwell, noted that the very religious Hamer, knew she was dying. In This Little Light of Mine, she was cited saying, “She called me one day and said ‘girl I’m real sick. I don’t want to die, but I made my peace with God.”

“She called me one day and said ‘girl I’m real sick. I don’t want to die, but I made my peace with God.”

Historians are careful not to depict Hamer as a”strong black woman” —a well-intended but harmful trope which advances the narrative that women like her don’t need help, love and protection.

She did take care of her community, and tried her best to ensure they had a better way of life. It’s a common issue among black women to cater to many, but go without care for themselves. Hamer was a revolutionary but she wasn’t invincible. She needed care, too. Nonetheless, she leaves behind a legacy that shows her pain and suffering were not in vain.

While Hamer’s activism is echoed today, the notion of being “sick and tired” is now addressed with a new buzzword, yet old concept: self-care. As black women honor Hamer and other activists for their courage, they also must heed the warnings of how oppressive systems, stress and chronic illness impedes one’s quality of life. They need to do more than care for their communities. Hamer would also want them to care for themselves.

Health & Fitness

To Beat Cancer, Talk To Your Family

After a cancer diagnosis, families that talk and listen to each other experience better health outcomes than those who don't.

Though medicine has scarcely stressed it, for Dr. Carla Fisher, an assistant professor at the University of Florida’s School of Journalism & Communication, good cancer care is all in the family. Strong familial relationships, she says, are crucial to cancer recovery. To prove it, Fisher has interviewed over 150 patients and family members about their relationships with one another then analyzed health outcomes of her interviewees. “We’ve found that [family] communication patterns can actually impact health outcomes,” she says.

Coping Together, Side By Side by Carla Fisher explores how family relationships can help improve health outcomes after cancer diagnosis.

Though such interviews can become emotional, they have allowed her to identify common communication patterns and formulate recommendations for clinicians and patients that encourage more positive and wellness-supporting rapports. Fisher focuses on breast cancer and the mother-daughter relationship (a subject which she tackled in Coping Together, Side by Side: Enriching Mother-Daughter Communication Across the Breast Cancer Journey) but the idea extends to other familial ties as well, she says.

In her field, Fisher is foremost. Along with earning numerous awards, she has collaborated with such medical behemoths as USAID, the National Institute on Aging, the National Cancer Institute, Mayo Clinic and the Memorial Sloan-Kettering Cancer Center. Clinicians, she says, are generally receptive to her ideas. But it will take time to fully incorporate them into a field that has long weighted the biophysical aspect of patient care over the psycho-social. Still, Fisher is in it for the long haul, she says.

We reached out to hear more about how good family dynamics can help fight cancer.

What initially got you into this kind of work?

Probably subconsciously it’s always been driven by my own family narrative. My mom is the youngest of eight and her oldest sister Rose was diagnosed at age 34 with breast cancer. Rose had four daughters, from age two to fifteen. Rose would talk about how the only thing she was concerned about was her daughters. This was during a time when they really didn’t know what they were doing with cancer, in the late sixties. She ended up dying two years later. I grew up hearing about that from my mom. Rose was like a second mom to her. But the family hadn’t let her talk [about her cancer]. My mother always looked back on that as, ‘We should have let her talk.’ She would remember that and tell me that her own mother, my grandmother, was never the same after Rose died. That profound loss was something that was woven through the fabric of my family identity. I hadn’t realized that it is actually a lot of families’ stories until I started this research. I would hear it over and over again.

Why is it important for cancer patients to sustain healthy familial relationships?

You think it would be a no-brainer. But the way things are prioritized in healthcare, you still have to have that evidence-based argument.

One of the things I’ve found is that, for mothers and daughters after a breast cancer diagnosis, if it’s a relationship where they’re communicating more openly about their concerns and needs, you see better health outcomes. On the flipside, if they’re acting more withdrawn from each other, they tend to have more negative physical health outcomes; fatigue, sleep disruption, things like that.

That’s what always informs my research: the clear connection that your interpersonal [family] life is as important to your survival as other physical or biological processes that tend to be prioritized in healthcare.

Your [family] life is as important to your survival as other physical or biological processes that tend to be prioritized in healthcare.

Health isn’t experienced in an individual vacuum. But at the same time, we’re not born with innate communication skills. We might think we’re being supportive or talking about things in a healthy way [with our family], but that’s not always the case. What I really focus on is identifying patterns of communication that promote health. Then I make that argument in healthcare, particularly cancer care, that we need to incorporate family communication and support services for the patient in order to ensure that the patient is maximizing their health and survival.

Carla Fisher

How does age and generation play into this?

What’s healthy for, say, a daughter diagnosed [with cancer] in her thirties coping with a 70-year-old mom, looks a little different if it’s the mom who was diagnosed. That’s partly because the younger generation’s boundaries of privacy are very fluid: we’ve been socialized to be more open. The older generation grew up in a time where you didn’t even say the word cancer: it was highly stigmatized. You certainly didn’t talk openly about the female body in a way that we do today.

The older generation grew up in a time where you didn’t even say the word cancer: it was highly stigmatized.

Older women in their 60s and 70s will talk to me about how their parents didn’t tell them anything. They had no idea what was going on when there was a parent diagnosed with cancer. So they feel that they’re being very open with their adult children by letting them know what’s going on and keeping them in the loop. Then, when you talk to their adult children, especially the daughters, they don’t necessarily feel that mom is being as open as what they would want. For those relationships, it’s really important that daughters respect privacy when it comes to parents. The boundaries of privacy are critical when it comes to their wellbeing. You don’t necessarily need to know everything.

How is it different when it is daughters that have been diagnosed?

Daughters in 20s and 30s are still developing a sense of independence. One daughter said to me, ‘The one thing I like that my mom did was that she left it up to me whether or not I allowed her to be there and be present in treatments or appointments.’ She appreciated that because it provided her control and independence, something that you’re robbed of after a cancer diagnosis. When she finally did say, ‘Mom I need you to help me,’ she said it really struck her how happy her mom was that she had allowed her to be there. ‘I realized that my mom needed to be there. She needed to mother. That was her own way of coping with [my diagnosis],’ she told me.

So I think when you talk to both of them together, they get a better sense of what it is that [the other] needs.

What are some signs of a not-so-healthy mother-daughter relationship?

When moms are diagnosed, they’ll often talk to me about how they want to talk to their daughters about what’s going on. They have this profound sense or need to protect their children from developing the disease themselves in the future. But oftentimes, after a diagnosis, daughters will withdraw from their mothers to avoid talking about cancer. One daughter explained it to me: she could not picture her mom not being there next year, because doing that was just too much for her. So she shut herself away in a box as a way of self-preservation. The problem is, mothers get really worried about this. So even if a daughter doesn’t intend it, this behavior can actually inhibit her mother’s health.

What ended up getting this particular daughter to come out of that box was realizing that she could support her mom in a way she could never do before. And also talking about cancer made it less scary. When not talking about it, your imagination runs wild and it becomes this big scary nebulous thing.

What are some recommendations you make to families dealing with diagnosis?

Humor, listening, affection. That’s listening and validating feelings, not listening and silencing them. So if someone says, ‘I’m having a shitty day’ or ‘I’m worried about recurrence’, you should not say, ‘Don’t worry about that,’ say, ‘Yeah it’s scary, I agree. I’m here for you.’ Listening with silence is good too, though it is hard for all of us. Being more open and showing affection is great. Affection with no words is really, really helpful emotional support for mothers and daughters. Humor, listening, affection.

This interview has been edited for length and clarity.