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Essays

When Health Insurance Is No Assurance At All

What does it say about our system when you can scarcely afford a routine medical procedure even after spending $12,000 a year on health insurance?

Lying in a flowerbed with bark chips poking my shoulder wasn’t the best way to start my 57th birthday. My husband Bob and I had taken the day off from our respective consulting businesses—he was a private investigator, I was a speaker coach—to head up the Southern California coast to Encinitas to shop for a beach coverup, have lunch at the organic paleo café, and take a walk through the Self-Realization Fellowship Gardens. Then my gynecologist’s office called. They wanted me in for another test. I scheduled it first thing, thinking we could head north afterwards.

Instead, thirty minutes after the procedure I found myself in the fetal position at the edge of the medical center parking lot, halfway between chunky mulch and pavement. My body was unclear what it wanted. Pass out? Throw up? Both? I’d sent my husband back up to the doctor’s office for a wheelchair and was trying to slow my panicky breathing. I felt the eyes of the freshly scrubbed parking valet on me. I sent him this silent command, “Please don’t call 911.” We had pitiful insurance. I couldn’t afford an ambulance.

Hard Decisions During Open Enrollment

I sent him this silent command, “Please don’t call 911.” We had pitiful insurance. I couldn’t afford an ambulance.

I’d worked since age 15. I’d always had health coverage through my job or my husband’s. By 2015, both of us were working from home. As self-employed workers we still paid our taxes and social security, but now had to run the gauntlet of private insurance. I was grateful for the Affordable Care Act’s provision for pre-existing conditions, as it meant we could no longer be turned down for coverage. That didn’t make it affordable. Our high deductibles covered little of our care. In 2017 two flu shots and a mammogram were the only care covered at 100%, yet our premiums were over $14,000. Every year I had to weigh the importance of continuity of care against the steep premiums of plans which covered my two specialists. I hadn’t had a primary care doctor or annual physical for ten years.

During open enrollment last November, with both of us in our late 50s, we debated whether we should skip health insurance and pay the penalty. Our 2018 deductible—the cheapest plan—was slated to come in over $12,000. We were healthy at the moment, working hard to watch our weight, eat right, and exercise. Could we risk it? If something happened we’d wipe out our savings, maybe lose our house. We bought in, unwilling to court disaster.

An Unwelcome Birthday Present

All was well until six weeks prior when I started spotting. I’d been on hormone replacement therapy to manage my menopause symptoms. A little blood could be normal, but it kept happening. I ignored it because seeing the doctor and the tests she’d order wouldn’t be covered. I told myself it was because I’d forgotten to change my estrogen patch on time. One day, the flow too heavy to ignore, I called my gynecologist’s office. They scheduled an ultrasound. I paid for the $250 test out of pocket, not covered because it’s diagnostic.

If something happened we’d wipe out our savings, maybe lose our house. We bought in, unwilling to court disaster.

When they called back with my results, they said I needed a uterine biopsy to check for abnormal cells. They warned me it would be uncomfortable. I took the first available appointment on my birthday, not wanting to wait. They wouldn’t be calling for another test so soon if nothing was wrong.

Before she did the procedure, my gynecologist explained that my ultrasound had revealed my uterine wall was thicker than it should be post-menopause, 7.5 mm instead of 5 mm or less. That thickness could be a side effect of the HRT, pre-cancerous cells, or endometrial cancer. Trying to quell my fears at hearing the C-word she said, “If you do have it, it’s the best kind. We almost always catch it early. We do a hysterectomy and then it’s gone. There’s rarely a need for chemo or radiation.”

Treatment I Couldn’t Afford

My first thought was that I couldn’t afford surgery. I knew my doctor was out of network and so was her hospital. If it turned out I needed this operation, she would have to refer me to a doctor I didn’t know.

She told me the biopsy might hurt, as the cervix is uncooperative my age. “If we can’t get the sample we need, then we have to schedule you for the procedure under anesthesia.” I knew I couldn’t afford that. I had to do it there.

When a doctor tells you a procedure will be uncomfortable, have a strong hand to hold. I tried to breathe through it. I tried not to flinch. I told myself to gut it out as tears squeezed out the edges of my eyelids. Finally, it was over. My doctor got what she needed and promised to call as soon as the results were in.

When a doctor tells you a procedure will be uncomfortable, have a strong hand to hold.

On the way downstairs in the elevator I felt light-headed. Bob sat me down in the lobby. Unsure of how to help, he came back with cold water, ginger ale, and a protein bar. He held my hand. He got me outside to a bench for air. He got me to the flowerbed because I thought I might hurl. He left me on the ground when I asked him to, because I knew I should go back upstairs to see a nurse. I hoped they wouldn’t charge me extra for coming back.

An Uncomfortable Procedure

Once I was wheeled upstairs, my blood pressure and pulse were so low they couldn’t get a reading. I heard the nurse explain to Bob I was having vasovagal syncope, an overreaction to the test that happens occasionally, causing my heart rate and blood pressure to drop suddenly. It looked serious but wasn’t a medical concern. My body needed time to right itself.

I suddenly needed the bathroom right away. Bob hustled me over there just in time. He asked if I was feeling better? Not quite. It turned out my stomach did need to empty itself after all. That finally did the trick.

Now that I could stand, he walked me back to the exam room. My pulse was now 45, my blood pressure coming up. The color came back into my always-pale face. They declared me safe to leave. Bob deposited me back on the same bench outside while he fetched the car. I looked at the flowerbed where I’d left my dignity, wondering how, in a building full of doctors, care was still nearly out of reach.

I looked at the flowerbed where I’d left my dignity, wondering how, in a building full of doctors, care was still nearly out of reach.

Once in the car, Bob and I agreed that my 57th birthday deserved a do-over. He drove me home for a two-hour nap. I made myself a birthday treat that night: fudgy chocolate cake with fluffy marshmallow frosting.

A Birthday Do-Over

The next day we headed up to a store where I found khaki Capris and a white linen shirt. I pushed away thoughts about my future as I pulled on clothes in the dressing room. I wondered whether I would be having major surgery with a doctor I didn’t know, and if hysterectomies were inpatient or outpatient procedures these days. We drove to Encinitas for organic Thai chicken salads for lunch. I ate chocolate cake for dessert at home.

My doctor called four days later. “How are you feeling now? Were you able to enjoy your birthday after all? It’s good news, we saw no abnormal cells. I’m going to lower your dose of estrogen. That should balance things out.” I felt the tension I’d been holding in my shoulders start to leave my body.

It feels like a terrible compromise,  to spend so much on a policy that covers so little.

I was thrilled I don’t have cancer, and that if I did, my insurance would have covered at least a portion of my treatment. But it still feels like a terrible compromise, to spend so much on a policy that covers so little. A car accident or major illness could wreak havoc in our lives. As Congress chips away at the Affordable Care Act’s protective provisions, we will see a rate increase of $3,300 next year. If they revoke the provision for pre-existing conditions, I’ll be without insurance altogether. For both those reasons I plan to trade off self-care with activism for the foreseeable future. With occasional slices of cake.

Essays

Can You Take A Vacation From Cancer?

When my family took a trip to the beach to take a break from my diagnosis, we discovered what vacations can and can't do to rejuvenate the soul.

The bulging suitcases were comforting harbingers of what was about take place: a vacation. My family might have overpacked a little for a four-hour drive to the beach, but this wasn’t just a typical break from the workaday world. This trip was our stab at a cancer-cation: a sorely needed respite from the homewrecker I’d been fighting for the past seven months.

During that period, I’d been diagnosed with breast cancer, undergone a mastectomy and an additional surgery to remove some lymph nodes, and received 36 doses of radiation. This litany of medical interventions sounds almost laundry-list, but it didn’t feel routine. I felt insanely self-conscious about how I looked, and I often felt overwhelmed and exhausted by the need to put on a happy face for my children, ages 4 and 7.  We’d explained to them in an age-appropriate way what was going on, but no way was I going to expose them to my physical pain, emotional depletion, and fear – hell, that shit was barely suitable for the grownups.

Hence, the cancer-cation. We headed out on the open road in hopes that we’d get a break from talking about it, thinking about it, and in my case, dreaming about it. I longed to busy myself with everyday problems like whether or not the kids had enough sunscreen on or whether I’d remembered to put my reading materials in the beach bag. We wanted to turn cancer off, even if just for a week.

A Geographic Cure for Cancer?

It turns out, though, that it’s harder to escape cancer than just driving away from it.

That was something we discovered after just an hour on the road, when I turned the knob of the dial to NPR. Fresh Air was on, one of our favorites, but after just two minutes, Terry Gross announced that she’d next be talking to a folk singer who had been diagnosed with breast cancer, followed by an obituary of a well-known author who had recently died in her 80s of… you guessed it.

I’d never turned a radio dial so fast in my life. Polka medley from a Lawrence Welk album? Death metal at top volume? No problem. Just anything but more cancer.

Next, we stopped at an ice cream shop to stretch our legs. I was choosing my flavor (always Oreo) when the woman who was scooping my cone asked me if I had breast cancer. I said I did, and in earshot of my kids, she said: “Oh that’s awful, my grandmother died of it.” Lead balloon #2 dropped.

This, here, was a reminder of what a carefree life was supposed to look like.

That evening, as we settled into our beach condo, we felt free and happy in a way we hadn’t for nearly seven months. Doing “normal” things like walking the beach at sunset and eating seafood for dinner made us nearly giddy with happiness: this, here, was a reminder of what a carefree life was supposed to look like.

After we got the kids down to sleep, we decided to start watching John Adams, a miniseries about the second president’s life. A certified history geek, I couldn’t wait to put my feet up and dive in. But even here, cancer found me. I soon learned that John Adams’ oldest child, Abigail, was diagnosed with breast cancer at 46. (I was diagnosed five days before my 46th birthday). Worse, the episode detailed her gruesome mastectomy, colonial-style: in-home, with crude tools, no anesthesia, and her family serving as surgical assistants. I ran to the bathroom, hyperventilating.

Wherever You Go, There You Are

I think it was then that I realized you can’t take a vacation from cancer. I’d run away to the beach in a vain attempt to forget the disease, but there’s no geographical cure for cancer. Jon Kabat-Zinn was right: Wherever you go, there you are.

I’d run away to the beach in a vain attempt to forget the disease, but there’s no geographical cure for cancer.

But that’s not to say that my vacation was a failure. I’d take that trip again in a heartbeat, because there was precious value in distancing myself, and my family, from the fractured reality we’d been living for more than half-a-year. Sure, cancer was always there to remind me that it existed, but our family still needed the normalcy of a vacation: a week of natural beauty, a bathtub with fish on the shower curtain, and the reminder that there was life beyond cancer, even if we weren’t quite there yet.

Essays Uncategorized

How I Became A Pink Person

I never really liked the color pink. But then I was diagnosed with breast cancer, and pink became the color that connected me to fellow survivors.

The first time I saw what cancer looked like I was in a science museum with my kids. The exhibit, which focused on microbes, had floor-to-ceiling images of cancer cells and microscopes set up to take a closer look at these rogue cells. I was fascinated and horrified all at once.

This was a few months after I was declared NED, or “No Evidence of Disease,” after a three-year fight for my life. In November 2012 I was diagnosed with Stage IV inflammatory breast cancer. And standing there in the windowless space, staring at the spiky microtentacles of the cancer cell, brought me back to the moment I found out I had breast cancer.

My mind could not process this invisible thing that was ravaging my body. Hearing the doctors talk about cancer cells and tumors and the rate of growth was overwhelming. How could these cells—this cancer—be doing all this damage all while I was at the park with my kids, brushing my teeth, making dinner? Seeing a scan or reading a chart detailing my tumor’s cellular makeup didn’t make it any more real.

Becoming A Pink Person

Enter the color pink. I had never been a pink “person.” It was just another color, something I associated with candy or ballet tutus or my grandmother in Florida. But suddenly pink became something tangible, something to touch and to see when everything else in my world seemed either colorless (chemotherapy) or invisible (radiation). Pink became the color of my cancer, the color of my world.

When I see a pink ribbon on a shirt, on a license plate, or on a suitcase at the airport, I can say: yes, that person has felt it.

And it gave my family and friends and those around me something to rally around, something to say: this is what I’m fighting for.

Pink did something else. It gave me a touchstone to other patients and survivors. People don’t realize how isolating and lonely it is to be so ill, how you can be constantly surrounded by people but feel so alone. When I see a pink ribbon on a shirt, on a license plate, or on a suitcase at the airport, I can say: yes, that person has felt it. Felt it themselves, watched someone they love suffer, supported someone into survivorship, said a heart-wrenching goodbye. It’s almost a physical sign: we’re all in this together.

We don’t, by contrast, bond over cells or, worse, crazed tentacle-covered blobs.

A Color That Connects

When I see pink, I always ask: are you a survivor? I feel a connection, even if it’s just for a few seconds. I have a collection of pink pins given to me by total strangers who support breast cancer research. One is a slim metal pin studded with deep pink rhinestones, a gift from a woman in a restaurant in California. Another is a soft, light pink fabric ribbon from a flight attendant in New York who wore it to support her colleagues. One is from a march in San Jose, an oversized neon pink metal pin that takes up an entire buttonhole on my shirt. I treasure them but also feel it’s my duty to pass them on, like a baton in a relay race. For me the color pink is a reminder that we are all fighting, recovering, persevering.

When I see pink, I always ask: are you a survivor? I feel a connection, even if it’s just for a few seconds.

Should I embrace another color now that I’m in remission? Something classically optimistic like green? Or purple, the universal color of cancer survivorship? People ask me this. But the color pink and breast cancer will always be a part of my life in some capacity. I have the BRCA gene that puts my kids at risk for cancer if they test positive for the gene. That makes me pink pretty much forever. To me it’s a reminder to be vigilant, and to never forget. Last year, 250,000 women in the U.S. were diagnosed with invasive breast cancer.  More than 40,000 women are expected to die from breast cancer this year in the U.S.

Until that number is zero I will be wearing pink, in all shades.

Essays

Breast Cancer and the Mom-God Fantasy

When I elected to have my breasts removed because of the BRCA I mutation, my twin daughters had to suddenly come to terms with my mortality.

I have the BRCA I mutation, meaning I had an 87 percent chance of developing breast cancer. After my preventative bilateral mastectomy, I now have a two percent chance. I think I made the right call, but even so, deciding to go through with surgery when there was nothing technically wrong was a grueling choice for me and my family… one that had unexpected ramifications for my relationship with my kids.

After my BRCA I mutation was identified, my husband and I had several conversations about whether it was better to get surgery to avoid a cancer diagnosis, or wait and hope for the best. It was a difficult choice. If I waited and did get cancer, I would have to get the surgery anyway, on top of chemotherapy and radiation. The combination would leave me sick and unable to take care of the household or my children for several months even in the best case scenario; in the worst case scenario, it could have killed me.

An Impossible Choice

After my BRCA I mutation was identified, my husband and I had several conversations about whether it was better to get surgery to avoid a cancer diagnosis, or wait and hope for the best. But how to tell our nine-year-old twins?

We decided to have the surgery. But how to tell our nine-year-old twins? Ultimately, we decided to tell them a week before the surgery–not too far in advance that they’d obsess, but not so soon to surgery as to give them an awful shock.

It didn’t work. My kids suddenly worried about me in a way they’d never had to worry about anything else in their lives. It’s come out in panic attacks, failing grades, angry outbursts, and emotional upheaval.

On the one hand, my children were scared for me. I’ll never forget seeing a page from an assignment my daughter had to do around that time for school. It was supposed to be an assignment to imagine a day in their parents’ lives, but her sheet was filled from top-to-bottom with just the words “PLEASE DON’T DIE, OH NO, HOSPITAL, PLEASE DON’T DIE” over and over again. But they were also angry at me, because suddenly, they realized that I could die. For the first time in their lives, they were forced to view me as a human being. I was no longer immortal Mom, the all-encompassing, immovable presence in their lives. Instead, I was reduced in their eyes to just another lady who could die, and they felt betrayed.

A picture of a mom with two twin nine-year old girls posing with a shaggy scotty dog.

Darlena Cunha, her two twin daughters, and their dog.

In My Daughters’ Eyes, Suddenly Mortal

Slowly, as I finish up my recovery, we are getting back to where we were, but their lives changed that day, not just mine. I went in looking one way. I came out swollen, bruised, and with drainage lines attached. Their dad takes them to school now—something that had never happened before—and we’ve been living on take-out until I could start cooking again. The girls see me unable to perform simple tasks, and it’s taking a toll on them. It makes the surgery not a temporary blip in my immortality, but a constant reminder that the definition they had of me was wrong.

Worse, they now know that they, too, can get cancer. That their genes, too, may contain ticking time bombs. They bombard me with questions I can’t answer: Will I still get cancer? Do they have it? Will they get it? How will they know? Will they have to lose the breasts they haven’t even developed yet someday? Will they die? In their eyes, my surgery hasn’t just robbed me of my immortality: it’s robbed them of theirs.

My kids suddenly worried about me in a way they’d never had to worry about anything else in their lives.

I’m almost completely healed now. I’m cooking again, and doing laundry. I’m here to define ‘infiltrate’ and ‘stealthy’ as my kids take on difficult mystery reading. I can lift my small dog again and wash down countertops. But getting back our family’s emotional flow has been difficult. I sometimes have to remember not to be angry at my children for being angry at me.

Leaving Behind The God-Mom Fantasy

What I’ve learned is not to expect too much, to be happy about little things and bring in joy when I can. So often, we deal with health crises, and nothing, really, can shake up a life more, but in accepting that we cannot change what we must walk through, that we cannot quicken the pace or hide the strain, we are setting ourselves and our families up for a solid recovery, not of the body that had been hurt or ill, but of the relationships tested in the distress of humanity.

In the end, though, I think this experience will make us all stronger, because it helped my family in a way I never knew we needed help. The more time that passes, the more I realize my children had to give up the mom-god fantasy, and, honestly, so did I. Before my surgery, I tried to be everything to them, but during my recovery, they had to learn self-sufficiency. Where once I was waking them up for school and helping them get dressed, now they were on their own as I struggled behind the closed door of a bathroom to empty the plastic recovery drains.

My daughters may no longer view me immortal after my surgery and subsequent recovery, but I can at least be thankful that the experience has better prepared them for a time when I’m no longer here.

Essays

I Married A Doctor. He Left Me When I Got Sick.

Just because you married a doctor doesn't mean your marriage can survive cancer, but it can show you who you really married.

I was a divorced, thirty-seven-old nurse on a New York City psych unit when a handsome doctor with thick dark hair introduced himself. He was six years my junior and winked at me because I couldn’t pronounce his Greek last name correctly. He was incredibly smart, graduating at the top of his Ivy League university with a free ride to medical school. Our lives felt full with purpose when we worked with the chronically mentally ill population.  We listened to indie rock bands like “Built to Spill” or “Yo La Tengo”. We had nachos delivered from our East Village Mexican joint while we played Scrabble. For every one of his, “sesquipedalian”, I’d come back with something like “dog”. Laughing hysterically, I’d say: “But, it’s not fair you speak Greek.”

Six months later, we tied the knot in a small ceremony at city hall in downtown Manhattan. Six months doesn’t seem like a long time to date someone before getting married, but whirlwind romances ran in my family. Fifty years ago, my parents went on their first date on New Year’s Eve and were married by April. They are still together; if it worked for them, why couldn’t it work for us?

Honeymoon Diagnosis

But newlywed bliss was a short-lived thing. A month after our wedding, I got a stomach pain. Seeking help, I was continually dismissed with condescending comments. Believing my pain was psychosomatic, a physician told me to see a psychiatrist. I felt betrayed, because my husband agreed: “You’re being crazy. I’m a doctor and I’m telling you there’s nothing wrong with you.”

My husband agreed: “You’re being crazy. I’m a doctor and I’m telling you there’s nothing wrong with you.”

Almost a year to the day of our first anniversary, I collapsed at work.  An emergency appendectomy eventually revealed a rare stage 4 abdominal tumor. As weird as it sounds for someone just diagnosed with a cancer that could kill them within 12 months, I felt validated that I was right; at least I wasn’t a hypochondriac.

I had one chance at survival, according to my oncologist: an experimental, brutal surgery where heated chemotherapy would be poured directly into my abdomen. I wanted to live, so I went for it. It took 10 hours and I lost most of my non-essential organs. In the ICU, a ventilator kept me alive. When I awoke my husband and my mom were there. I looked at the tubes poking out of my skin and staples from my breastbone to my pelvis, relieved that at the very least, the two people I loved most were there.

The surgeon explained the cancer was more aggressive then he’d suspected. In his Colombian accent, he told me, “I’ve done my part, now you do yours. You stay alive. Laugh as much as possible: hat’s your only job.”

Laugh? I could barely breathe.

An attractive 37-year-old woman in a black dress and strapped sandals with a tattoo on her left arm poses in front of a fence and a white house in New Orleans.

Liz Montgomery before her cancer diagnosis.

My mother stayed with me. My husband needed to get back to work. I didn’t want him to leave, but I accepted it: we had bills to pay.

My Lonely Recovery

For the next two weeks, I hardly saw him, but he picked me up when it was time for me to be discharged.

The drive home was merciless. Every bump in the road felt like I was being shanked. We pulled over six times because I was so nauseous. He had to go to work the next day and became frustrated at the length of the trip.

That was the first of many tip-offs that my husband was just not going to offer me the support and level of care I needed during my recovery. Soon, my mom called. ““Liz, you need to come stay with me and dad to recover,” my mom said. He didn’t object and I didn’t question her judgment.

That was the first of many tip-offs that my husband was just not going to offer me the support and level of care I needed during my recovery.

Soon, I was recuperating at my parent’s New Jersey, fifty-five and older community. I slept upright on my parent’s couch. Their house felt like a nursing home, or as my older brother called it, a waiting room for heaven.

I was on methadone, morphine, and fentanyl to quell my pain. My 72-year-old Irish Catholic mother comforted me until I fell asleep. She lifted me up with her frail arms to bathe me. When clumps of my jet-black hair remained, she shaved my head. Unable to eat, I needed intravenous feedings.

While my husband continued on with his life in NYC, mine felt like it was coming to an agonizingly slow end.

Friends called but I was too weak to speak. In moments of lucidity I remembered my life as a fun, fit nurse before the operation. My body felt like a shell holding my soul hostage. My spouse visited on weekends. My mom liked to put blush on my cheeks to prepare for his visit: “There now you look great.” He’d arrive excited to tell me stories about the hospital, but I wasn’t good company. The narcotics took over and like a heroin addict I’d pass out mid-sentence.

In moments of lucidity, I missed my husband and our Scrabble games. So still unable to care for myself, and against my parents advice, I returned home to be with him, our dog and three cats. After an MRI declared me cancer free, my so-called remission still included hospitalizations, bowel obstructions, infections and more tube feedings.  A home health nurse visited twice a week.

While my husband continued on with his life in NYC, mine felt like it was coming to an agonizingly slow end.

Too medicated to play games, we watched Dexter on Showtime in an attempt to find commonality again. Halfway in I’d fall asleep. One night, as he fought back tears he said, “I’m so sorry I didn’t believe you. I’m a doctor and I didn’t do anything.” We cried together.

The Collapse

My husband encouraged me to get back to nursing. Ignoring my instincts, I agreed. I wanted to prove to both of us that I was getting better, so I pushed myself. My fellow nurses welcomed me back. Weighing 90 pounds at 5’7”, wisps of baby hair covered with a scarf, I hid my feeding tube with a black armband. I was embarrassed by the way I looked, and perpetually exhausted, but I cared for my patients every bit as diligently as my husband had failed to care for me.

After my first shift ended, I was excited to share my accomplishment of making it through the day. Opening the door to my apartment, my animals ran to greet me. Someone else was waiting to greet me too. Sitting in our green, velour, armless chair, my husband wore an old band T-shirt, cargo shorts, and flip-flops.

Liz Montgomery, fighting for her life after being diagnosed with a stage IV abdominal tumor.

Without looking at me, he said simply: “I can’t do this, I can’t handle being married anymore.”

He stood up and walked out.

Shocked, I didn’t follow him. On my short walk to the bedroom, I noticed all of his stuff was gone.

That night, too stunned and tired to even process what had happened, I watched Bridget Jones Diary on DVD, swallowed my medication and fell asleep.

Without looking at me, he said simply: “I can’t do this, I can’t handle being married anymore.”

In the morning, the realization of abandonment felt like a weight on my chest. I called him repeatedly, but he didn’t answer. My mom rushed over, moving in for weeks to help me heal emotionally. She begged me to not think about him, fearing stress would cause my illness to return. Attempting to comfort me, she said: “Liz, try and rest. You will find a way through this, you always do.”

To Have And To Hold

I worked when I was able. One day, I bumped into my ex at the hospital. He said. “Please let it go, we haven’t been a real couple since you were diagnosed.” He then told me he had a girlfriend.

His lips kept moving after that but I couldn’t hear what he was saying because I’ve never hated anyone more than I did in that moment. I could understand that our union was too young for him to endure my illness and the time apart, but I couldn’t fathom how anyone, especially my husband, a doctor could lack such compassion.

I grieved the loss of my organs and my marriage. Eventually, my mother went home leaving me a yellow post-it note saying: “Liz, you are NEVER alone. Love, Mom.”

As time passed, my sadness dissipated. I went out with friends and to therapy. The fantasy I had of my parent’s high-speed romance had influenced my rush down the aisle. Now it was clear I had scarcely known him. But I don’t blame myself: I may have been naive marrying someone I only knew for six months, but years later, I still don’t understand how anyone—let alone a doctor with years of training to handle the chronically ill–could so incapable of fulfilling the vows he had made to me: “to love, comfort, honor, and keep me in sickness and in health.”

Cancer didn’t kill me, so I sure as hell wouldn’t let a broken marriage.

Regardless, I eventually realized that was his problem, and not mine. My problem was getting better, and so I stopped wasting time thinking about him, and spent more time focusing on my well-being. Cancer didn’t kill me, so I sure as hell wouldn’t let a broken marriage.

But sometimes it still stings when I hear about him, and his work today as a member of a groundbreaking cancer anxiety research team. I hope he treats his patients with more compassion than he did his wife.

Essays

Life After The Sell-By Date

When I was diagnosed with gallbladder cancer, I was given just months to live. Seven years later, I'm still cancer free.

When Dr. Siddhartha Mukherjee wrote in The Emperor of All Maladies that some cancers kill as inevitably today as they did thousands of years ago, the example he used was gallbladder cancer. That’s what I was diagnosed with in August 2011: stage four, metastasized to the liver. Still, the core of this story would be much the same with any life-threatening illness. To someone who’s just been handed a death sentence, the mode of execution matters less than whether there’s any way to use who you are and what you know to find a way to survive, and go on being you.

At first, it looked as if there wasn’t. Chemotherapy would probably keep me alive for only a few months—not much longer than I’d live without it. Surgery offered a tiny chance, but it wasn’t generally done because of the time-honored assumption, based on relatively few studies, that the cancer would come roaring right back. It was a hard truth, and some of the doctors I consulted tried to obscure it with platitudes like “This cancer isn’t curable, but it’s treatable,” and “You’ll be getting the best care available.” No doubt they were trying to keep me optimistic for as long as possible, given their conviction that I couldn’t live long — and if I’d stayed with them, I wouldn’t have.

It was only by confronting the seriousness of my situation head-on that I understood the need to keep looking for a surgeon who’d consider my specific case with an open mind. But surgery wasn’t a no-brainer.  Faced with the reality that my life was almost certainly coming to a close, I had to think seriously about spending two of my precious remaining months suffering the aftereffects of surgery that might do little if anything to slow the cancer.

A decision like that isn’t about what you know, in a situation where so little can be known for sure. It’s about who you are. Ask yourself: what would you do? It’s a yes-or-no question with no middle ground, and you don’t have all the time in the world to think about it.

A decision like that isn’t about what you know, in a situation where so little can be known for sure. It’s about who you are.

For me, I decided I’d rather try the surgery and have it fail than wonder, for the few months I’d live, whether I’d missed my one chance.

How To Find The Right Cancer Surgeon

Now chair of the department of surgery at Penn Medicine, Dr. Ronald DeMatteo was, when I first saw him, a top liver surgeon at Memorial Sloan-Kettering Cancer Center in Manhattan. I wasn’t in his office by chance. In the days after the diagnosis, I’d scoured the websites of major cancer centers, identifying surgeons who listed gallbladder cancer as a specialty. Dr. DeMatteo caught my attention not only because of his honors and awards, but also because he looked like a creative thinker. Heavens knows, that’s what I needed.

A few days after we first met, I was sitting in a cushioned chair so deep that my feet didn’t reach the floor, looking at him across a big mahogany desk. We were in his private office, not an examining room, but it was still scary as hell. For all the emotion either of us showed, though, we might have been discussing a routine home repair.

“If all goes well,” he said matter-of-factly, “we’ll take out three-quarters of your liver.” He said that like it was the most natural thing in the world. If all didn’t go well—if, that is, they found more cancer than they’d expected—they’d close up and do nothing.

My diagnosis was officially considered ineligible for surgery, the operation was dangerous in itself with little likelihood of success, and a review committee at Sloan-Kettering had advised against it.

So there I sat, listening to a man I’d known for less than a week calmly describing how he’d slice open my belly and cut out most of a vital organ. And what was I afraid of? That maybe he wouldn’t do it. Is that weird, or what?

For him, as for me, the decision had not been an easy one. My diagnosis was officially considered ineligible for surgery, the operation was dangerous in itself with little likelihood of success, and a review committee at Sloan-Kettering had advised against it. And yet, despite his colleagues’ opposition, Dr. DeMatteo had agreed to take the risk, because the tiny chance that surgery offered was the only chance I had. In a situation where medical science couldn’t provide a clear right answer, and with a healthy patient who understood the odds and wanted to go for it, he took the long shot.

Death Sentence Reprieved

As I write this story, there’s been no sign of cancer for seven years. To some, that might seem to prove that he, and I, made the right choice.

But I think of renowned philosopher and activist Susan Sontag, who sought out the most aggressive treatment for breast cancer, and recovered. She then sought out the most aggressive treatment for uterine cancer, and recovered. Finally, she demanded the most aggressive treatment for leukemia, only to die harder, and probably sooner, than she would have without it.

So did she and her doctors make two right decisions, and one wrong one? I don’t think so. Far more often than we like to admit, success or failure depends not on painstaking analysis, but on chance. A Sanskrit verse says it best: “Man, your control extends only to your actions. Over the results of your actions, you have no control.”

 Far more often than we like to admit, success or failure depends not on painstaking analysis, but on chance.

When facing life-or-death choices under conditions of great uncertainty, it’s absurd to define right and wrong in terms of an outcome we can’t possibly predict. The right decision is the one that makes the most sense at the time, given not only what we know, but what we value and how we think. It’s a coin tossed in the air. You call it. That’s all.

Now retired from my job, I’m a freelance writer and a volunteer at my local hospital, where I run workshops on how to use writing to relieve stress. I’m an active member of Rotary International, the International Women’s Forum, Mystery Writers of America, the Authors Guild, and the Cosmos Club. I’m a friend and a family member, a Scrabble player and a frequent traveler.

What I’m not is a cancer victim. In fact, although technically a cancer survivor, I don’t identify myself that way unless someone pushes it. Yes, I had cancer. And yes, there’ll never be a guarantee that it won’t come back. But that’s not who I am.

What I’m hoping for, if I’m lucky, is to go on living as I am until felled by what Dr. Atul Gawande describes in Being Mortal as “ODTAA syndrome,” for “one damn thing after another.” It’s the point when the body reaches its natural end, and what’s on the death certificate is almost random — just whatever happened to get there first.

In the meantime, each year on my birthday, I send Dr. DeMatteo a thank-you note. I’m still here, I tell him. And life is good.

Explainers

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.