Jen Sotham is a freelance journalist and screenwriter/director. She was working as a university professor in Busan, South Korea, where she lived for almost a decade, when she was diagnosed with metastatic melanoma in 2014. Still doing battle with the beast, Jen has since returned to New York, where she has been using her voice to share her story through film, essays and her blog, jenvscancer.wordpress.com

Jen Sotham

JOHN FISHER, survivor - PHOTO BY JAMIE ORR

If you had asked John Fisher whether he considered himself a survivor of cancer immediately following his bladder cancer diagnosis in 2014, he would have said no.

“I would not have classified myself as a cancer survivor because I hadn’t been treated yet, and I didn’t know what the outcome would be,” says Fisher, 46, a technology specialist for a school district in Cedar Rapids, Iowa. “I always thought of a cancer survivor as someone who had beat it, and I never pictured cancer as this ongoing thing, living treatment to treatment, scan to scan.”

Cancer being an “ongoing thing” is a recent phenomenon. In the dark ages of treatment, when the diagnosis was synonymous with an imminent death sentence, the notion of a survivor was a person who had lost a loved one to cancer, as in “Jane is survived by her husband, Jim.” With improved medical interventions and chances for prolonged survival, the term shifted. For many years, the accepted biomedical definition of a survivor was: “an individual who has had a life-threatening disease but has remained disease-free for a minimum of five years.” In retrospect, many believe that those criteria failed to account for the variability in the course of different types of cancers and among individual patients, and the sudden impact cancer has on a person’s life.

The founding of the National Coalition for Cancer Survivorship (NCCS) in 1986 was the catalyst for an update of that definition, says Julia H. Rowland, Ph.D., director of the National Cancer Institute’s Office of Cancer Survivorship. It proposed that “an individual may call him or herself a survivor from the moment of diagnosis and for the balance of one’s life.” Today, this remains a widely accepted definition of the term.

“At the time NCCS was established, the definition of who was a cancer survivor was that used by the medical community and referred only to those individuals who had remained disease free for five years,” Rowland says. “In 1986, however, more than 50 percent of those diagnosed could expect to be alive in five years, and the percentage was even higher among those diagnosed as children. The coalition’s founders argued that people could not put their lives on hold for five years (while waiting to see if they would live to become survivors). Decisions about valued goals and desires needed to be discussed before treatment started.”

For Betsy Stein, a 42-year-old New Yorker who works in finance, making the transition to calling herself a survivor of cancer was quite a jump. Stein, who has been treated for three types of cancer, was first diagnosed with thyroid cancer in 2009, which was fully treated with a thyroidectomy.

“It was a one-and-done situation. I didn’t even consider myself a cancer patient back then,” she says.

Her second cancer diagnosis was not as cut-anddried. In 2015, Stein learned that she had melanoma that had metastasized to her liver, lungs, jejunum (part of the small intestine) and brain, and was given a very grim prognosis.

“I remember being in the hospital, looking out over the East River and contemplating the fact that I was told I could have as little as three weeks to live,” she says. “I mentally fought it with the mantra, ‘This can’t be it. It’s not over.’ I knew I had so much more living to do.”

Stein was treated with Gamma Knife radiosurgery, which is a precise form of radiation therapy, and put on Zelboraf (vemurafenib), a targeted drug commonly used to treat melanoma that expresses the BRAF gene mutation. When she came out the other side with most of the cancer gone, Stein began to identify herself as a survivor of cancer.

On top of several recurrences of her melanoma, Stein was diagnosed with lung cancer in 2016. She has undergone chemotherapy, surgeries and additional Gamma Knife treatments, and has had periods where she was without evidence of disease. Despite her illnesses and treatments, she maintains a positive attitude and has managed to squeeze in trips to Alaska, Mexico, Spain, the Dominican Republic and, most recently, Sri Lanka.

“I have to do what I have to do during periods of illness so that I can return to normalcy and have a good life,” she says. “I don’t want to live in a cancer bubble.”

Today, despite the fact that he is still undergoing treatment, John Fisher also identifies himself as a survivor of cancer. It was the simple act of making an appointment that empowered him. After a recurrence in 2015 that led to a risky surgery and subsequent radiation, Fisher decided to meet proactively with a doctor at the University of Iowa Holden Cancer Center’s research department to explore his options.

“Instead of sitting around and waiting for it to come back, or letting my doctors dictate everything, I was taking my diagnosis into my own hands,” he says. “That was when I decided that I am a cancer survivor! I think the revolution in cancer medicine right now is changing a lot of the traditional definitions of survival. I am encountering more and more fellow patients who may never be cancer-free for five whole years, but may still be alive into their 80s or later, happy and otherwise healthy. I used to think of ‘cancer survivor’ as meaning someone who had experienced cancer and then, after treatment and time, was proven to be cured. I now know how a cancer diagnosis and treatment affects someone physically and emotionally, as well as their caregivers. I think anyone going through that with the will to keep fighting, in spite of what odds they are given, is a survivor.

The truth is that, although the language used by society and the medical community may be updated to reflect advances in treatment, opinions about when and to whom the term “survivor” applies are as individual as the people affected by cancer — and may change as people continue to live with their disease. “It is important to note that, when the NCCS founders proposed their new definition, they never meant for it to become a label,” Rowland says. “Rather, their goal was three-fold: to eliminate the then widely used term ‘victim’ for someone with cancer; to provide hope for those diagnosed that there was life after cancer; and, most importantly, to change the dialogue.”

According to the American Cancer Society, more than 15.5 million children and adults with a history of cancer were alive on January 1, 2016, in the United States. It is estimated that, by January 1, 2026, the population of survivors of cancer will have increased to 20.3 million. The changing face of the disease has encouraged the cancer community and society at large to expand the lexicon used to talk about the disease. However, many feel that there is still work to be done in order to update the language people use to discuss survivorship.

Robert Carlson, M.D., a breast cancer specialist and CEO of the National Comprehensive Cancer Network (NCCN), advocates using a less static term. “Use verbs!” Carlson suggests. “‘Cancer survivor’ is a label, while life after a diagnosis is really a process of facing mortality, dealing with short-term and long-term side effects of the cancer and its treatment and facing ongoing societal issues of having had cancer,” he says. “‘Cancer surviving’ is an active, ongoing process, and is my preferred term.”

As for when and to whom the term applies, Carlson agrees with the definition of survival as starting at diagnosis. “For many cancers, the course of treatment may span many years, even more than a decade, without any evidence of disease,” he says. “Where in the timeline should the individual be identified as a ‘cancer survivor’ or as ‘cancer surviving?’ The straightforward solution is to start the timeline at diagnosis.”

When it comes to planning for care during survivorship, the standard recommendation is to create a plan that describes suggested follow-up care and who should provide it. The Institute of Medicine’s 2006 report “From Cancer Patient to Cancer Survivor: Lost in Transition” outlines four essential components of a survivorship care plan: surveillance for recurrence or a new cancer (close to 19 percent of new cancers diagnosed this year will be in individuals who already have had a cancer diagnosis); screening and intervention for consequences of cancer and its treatment (for instance, persistent physical, psychological, social or existential effects of illness); prevention of late-occurring cancer or other conditions, including use of techniques to support health; and plans for coordination of recommended care going forward.

“The advocacy community initially wanted these documents to be generated at the time of diagnosis and modified across the course of care. However, in most settings today, these documents are being generated at the end of acute treatment,” Rowland says. She believes it is critical that patients be their own advocates, engaged in the creation of their own survivorship plans.

“Self-advocacy doesn’t mean making all of the decisions yourself,” she says. “Sometimes it means delegating — (as long as you’re) not abdicating.”

Rowland also asserts that the cancer community should gravitate toward a more holistic approach. “We talk so openly about the medical and physical aspects of survivorship. Cancer has a huge psychosocial impact, and the psychosocial aspects are still put on the back burner,” she says. “The survivorship movement is about achieving good quality of life whether you are living with, through or beyond cancer. Let’s make it as full and rich and important as we can.”

Stein is accomplishing that by looking forward with gratitude.

“Survivorship is an amazing place to be,” she says. “It’s a gift, in a way, because it forces you to reflect on what you really want out of life. As awful as cancer has been, surviving cancer has been a positive experience that helped me change my life for the better.”

Fisher feels that his continued survival allows him to live more in the present.

“I’ve always had a natural inclination toward worry, despite the fairly privileged upbringing and good life I’ve had, and I’ve had anxiety issues since I was a little kid, so I’ve spent time in therapy,” he says. “When I was diagnosed, all of those things that I learned in therapy, and about mindfulness, clicked. A lot of those superficial kinds of worries have taken a back seat. So instead of fretting about what will happen next week or next month, I can just take it day to day.

Articles

When does a patient become a survivor of cancer? Some believe it’s at the moment of diagnosis, but others disagree.

Defining Cancer Survivorship

I was born with a compass in my heart. As a child, I was obsessed with my Jacques Cousteau photo book and my atlas; memorizing maps was my hobby. The thing was, my parents weren’t really travelers. Or at least, they couldn’t afford to be after I was born. Sure, we took annual trips to Los Angeles to see my grandpa, visited my cousins in Austin, did the obligatory theme park trips with family friends. But the only time as a youth that I (kind of) left the country was when a rich friend’s parents took six of us to the Bahamas for her sweet 16, where we did a bunch of things that 16-year-old girls shouldn’t do.

Then, I discovered the Grateful Dead. I spent every university break spinning and dancing in every corner of the United States. I even spent a summer hitchhiking all by my lonesome across the country in the back of big rig trucks. I traveled within the country quite a bit in my 20s… and then bigger things called.

 birthday, I gifted myself with a six-week solo backpacking trip through Western Europe. Soon after, I did a Costa Rica jaunt with two of my girlfriends. Then, through a journalism job, I was invited on a press trip to cycle the west of Ireland. I fell hard and fast. I knew that a career as a writer was going to be a long, hairy trek and travel became my Gatorade.

At 32, I took a job teaching English in Busan, South Korea. My intention was to stay there for a year, to save enough money for a trip around the world, then return to the U.S. I stayed for eight years, and added the stamps of 25 countries to my passport. In 2010, I did a three-month trip through Central America between teaching contracts. I had just scored a job for the fall as a professor at a university in Busan — a gig with a 10-hour work week four months of paid vacation. (I know, right?!)

While doing my advanced Scuba certification in Honduras, I noticed that a mole on my inner knee had changed.  During the rest of the trip, the edges of the mole continued to blur, the color went from brown to black, and it became raised. On a stopover in New York, a family friend who was a dermatologist biopsied it and confirmed my worst fear: it was melanoma.

I went back to Korea as planned, had two excisions until the margins were clear. One year later, a PET scan (which only cost me $100, thanks to Korean national health insurance) turned up clear. Two years later, a metastasis to a local lymph node required surgery and radiation therapy. To this day, I often wonder what would have been had I, at that point, returned home to be treated by a melanoma specialist who didn’t require a translator to communicate with me. But I can’t travel back in time, so I try not to let that “what if” be too heavy of a burden.

Once the distant metastasis came, just one year later, it was time to head back to New York to seek out more expansive treatment options. I immediately started an immunotherapy combination, and three months later, I had a complete response. I celebrated with a road trip through Europe with a close friend. A few months later, on a family vacation to Mexico, I got to check scuba diving with sharks off my bucket list.

I remained disease-free for a year, and then my cancer came back — much, much worse. Since that recurrence in April 2016, I have been in constant treatment, and have been unable to travel. Even when I do have time between treatment cycles, I have to take so much time off from my part time teaching job for medical appointments that travel is just not viable. Not to mention that, with the side effects attached to many of these treatments, I cannot take the chance of being too far from western medicine. I had to cancel a trip to visit Korea last year because a 16-hour flight over the Pacific was just too risky.

Travel is still very much in my blood. It’s in my soul. Unfortunately, it’s not in my life. As a result of my own travel history, I’ve accumulated a wealth of friends who are globe trotters. The downside to this is that Facebook can be absolute torture. Last week, a friend posted a request for recommendations for her upcoming trip to Zanzibar, my number one dream destination. I clicked “like” and then left a comment wishing her happy travels, but inside, I was smoldering with envy.

The upside to having friends who travel is that they actually come see me. Since my recurrence, I’ve had a constant succession of close friends from around the world stay with me — visits that have strengthened bonds that I cherish.

I usually try to end my posts with some sort of positive spin, or an epiphany that shines a ray of optimism. But being grounded by cancer just plain sucks. While living in the now does relieve much of the stress of having cancer, my “now” is devoid of true adventure. My wanderlust — one of the things that makes me “me” – is unfulfilled.

As my Instagram feed fills up with my friend’s photos of Zanzibar, I will do what I always do… click the little heart below each mind-blowing picture. And although I mean “the heart,” I am genuinely happy to see my friend enjoy her holiday — living vicariously is not all it’s cracked up to be. 

A cancer diagnosis robs us of many things. For an avid traveler, its like a bird being trapped in a cage. 

Oh, the Places You Won't Go: Being Grounded by Cancer

A cancer diagnosis and treatment can take over your whole world. Here are a few ways to reclaim parts of your life and ease some of the emotional stress that cancer brings.

Last week, after feeling great for a few consecutive days, I experienced an onslaught of side effects from the current IL-2 treatment I am undergoing… chills, fever, nausea. As I lay on my parents couch, crying and waiting for the Tylenol and Zofran to kick in, my mom said to me, “Well, you were running around the city yesterday when you probably needed to rest.” My inner teenager took over and, in what was probably a harsher tone than necessary, I said. “What, should I just stay in bed when I am feeling good? I want to live my life. Besides, I don’t consider sitting on the grass at Prospect Park listening to bluegrass running around.”

The truth is, I did run around a bit. I had an appointment for blood work at my cancer clinic, after which my friend and I hopped downtown to eat xiaolongbao at my favorite place in Chinatown. Then, we jumped on a train to Brooklyn to meet up with some other close friends to take in the musical stylings of Bela Fleck and The Flecktones. Not once that day did I feel run down or appetite challenged or fevery. In fact, I didn’t feel like I had cancer at all. As much as I believe in and practice proper rest, including two hours more sleep per night than before my diagnosis, I refuse to let cancer force my life into being devoid of pleasure. When I wake up and feel great, I go do something that brings me joy. After all the shit I’ve been through, I deserve joy. I NEED it to keep the scale balanced.

Adjust Treatment Schedules to Accommodate YOUR Lifestyle

My current course of treatment required for me to be hospitalized for two separate weeks this summer, two to three weeks apart. I was told that I would probably be feeling mostly fine during the weeks when I was not in the hospital. The start date for my first week of hospitalization was scheduled according to the protocol of the clinical trial. The second hospitalization was scheduled three weeks later because my oncologist would be on vacation until then. The week I was due for my second stint as an inpatient was a little tricky, as my oncologist wouldn’t be returning until midweek, meaning she would have to find a protocol-appropriate attending to round on me on the days when she would still be out of town. “Well,” my doctor said, “the trial does allow for us to push it back one more week, when I’ll be here.” The week she was referring to was the week that I had planned to housesit at my favorite happy place by the beach, have a close friend visiting from out of town, includes my birthday and an annual family gathering. I looked my oncologist in the eye and said, “I’m sorry, but that week I am not available for cancer. Please do everything in your power to make the previous week work.” And she did.

And so it is that I am writing this blog post from aforementioned happy place, with my inpatient week behind me and am able to fully enjoy my birthday week and all it has to offer. I still have to run into the city for an outpatient follow-up appointment one day, but that’s perfectly acceptable to me. Many people with cancer are afraid to delay or postpone treatments, or they are unaware that they are even able to do so. Yes, there are times when aggressive disease doesn’t allow time for delay. And sometimes treatment protocols are inflexible, but often they are adaptable. Because of the nature of my disease, I have been and probably will remain in ongoing treatment. One of the things I try to always do is have my oncology team print out a treatment schedule for several months in advance, so that I can plan around it. But when fun or important life events are in my calendar, I ask them to please adjust the treatment schedule to accommodate those plans. When you have late-stage cancer, those life events become all the more precious. Most doctors are aware of that, and will work around your schedule when they are able to.

Be Assertive About Your Communication Needs

Before my two hospitalizations this summer, I respectfully asked my friends and family members to “back off” when I was in the hospital. I would be undergoing a pretty intense treatment regimen, and I wanted the hours in between being poked and prodded to focus on writing, reading and catching up on Netflix shows, not answering text and Facebook messages asking how I felt. The moment I was released from the hospital, the questions commenced. I get it. So many people are genuinely concerned about my wellbeing… it’s a good problem to have. The way that I have personally dealt with this good problem is by maintaining a regular blog, detailing the medical logistics and emotional impact that come attached to my cancer diagnosis. Still, people close to me are inclined to ask how I’m doing, how treatment is going, as they should. OR, they avoid broaching the subject because they feel guilty about forcing me to talk about it. The thing is, loved ones and caregivers NEED for us cancer patients to give them some direction in terms of how and when it is appropriate to discuss our diseases. When someone asks, I do one of two things. I engage in the conversation, because at that moment I am ok with talking about it, or I simply say, “I don’t want to talk about cancer right now.” And 99 percent of the time, people respect that and move on to a question about my Game of Thrones theories or upcoming plans. For those who avoid the C word, if I need to talk about it, I just talk about it, and they talk through whatever I need to talk through with me, usually with a sense of relief that I am the one who brought it up. And I’ve always been very clear with my people that they, too, are allowed to say, “I don’t feel like talking about cancer right now.” 

A Life Less Cancery

I've come to think of the word “foodie” as a ridiculous word, or at least a word that has lost its exclusivity. We live in an era where anyone can become a gourmand, either voyeuristically or tangibly. I mean, I've watched on TV as an 8-year-old kid from rural Missouri whipped up a flawless Beef Wellington. And today, dietary restrictions don't really suck that much... I made a batch of Betty Crocker gluten-free brownies last month that were the real deal. The thing with cancer is that there aren't any foods that I can't eat. Instead, it's a matter of what I should or shouldn't eat, and, sometimes, what I do and don't want to eat.

Call me ridiculous, but I am, in fact, a foodie. As much as I despise the word, it's one that I think most people who know me would use to describe me. I was lucky to grow up in a family that dined out at fine restaurants on a regular basis, and my family boasts generations of badass cooks. I can bang out a few choice dishes, myself. I wouldn't call myself an excellent cook - but I am an excellent eater. By that, I don't mean that I can eat a larger quantity of food than someone else - I've always been pretty mindful of portion control. I just have a profound understanding of what foods complement each other, of exactly what and how much to order in a group dining situation, of how long to pause between courses to get the most out of a meal, in terms of both consumption and socialization.

The immunotherapy combo (Yervoy + Opdivo) that was my first course of treatment when I was diagnosed with metastatic melanoma demolished my thyroid. With thyroid issues come appetite issues. There was a brief period of time when I struggled with eating, but as soon as my body adjusted to the hormone replacement drugs, my appetite went back to normal. The immunotherapy also demolished my cancer, and I spent an entire year NED. In the month leading up to my one-year scans, my love for food did a runner on me. I remember being at a fine restaurant with guy I was dating, barely getting through half of a phenomenal short rib risotto before welling up in tears and throwing in the towel. I thought it was my thyroid again — it had flip-flopped a few times and my meds had to be adjusted – until I went in for my one-year scan results to learn that my melanoma was back, worse than before, and all in my GI system.

Since that recurrence 14 months ago, I have lost 30 pounds and required quite a few blood transfusions. Treatment after treatment works for a short time to slightly shrink my tumors or keep my disease stable before my cancer becomes resistant and my oncology team has to try something new. How fortunate we are to live in a time with endless treatment options and clinical trials coming down the pipeline.  

Fortunately, I have mostly been “on-again” in my love affair with food. Many people have recommended special diets, especially ones that call for zero sugar intake. I have been encouraged by both my doctors and my loved ones to do what makes me happy... if eating delicious food improves my quality of life, then eat delicious food. My oncologist always tells me to pay attention to my body, to eat what I want in moderation. I am lucky that, for me, good eating mostly equates with healthy eating. I eat three meals a day, I never binge, I don't drink alcohol save for the occasional glass of wine when a meal calls for it. When I buy a pint of ice cream, it lasts me two weeks.  

When I stopped responding to my most recent treatment, and was told that the clinical trial that seemed my best option wouldn't start for a month, I panicked. I hadn't been treated for three weeks before the negative scans, which meant that it would be a total of almost two months without any form of treatment. In melanomaland, two months without treatment can mean rapid progression... distant metastasis... it's kind of like dog years.  

I decided to finally read through the literature a friend has been sending me about the 

. Basically, it's a high-fat, high-protein diet where you cut all carbohydrates and sugar out of your regimen. The theory is that, since cancer feeds on glucose, if you deprive your body of foods that turn into glucose, your body goes into a state of ketosis, meaning your cells feed on fat. Apparently, healthy cells are able to thrive on only fat, where your abnormal cells - or cancer cells - starve. The thing is that even a tiny 'cheat' brings your body out of ketosis and it can take two or three days to get back into it. The science behind it seemed legit, so I decided to give it a try. At least I'd be doing something while waiting for the clinical trial to start.

After consulting a few online meal plans, I did a big food shopping trip and became confident in my ability to stick to this. Eggs, cheese and bacon; tuna salad with extra mayo; steak and creamed spinach, fatty salmon with cauliflower in butter sauce; as many avocados as you desire - totally doable. The only thing that seemed daunting was the 'no fruit' thing. To address this, I bought sugar-free Jello. The first two days were easy... with the exception of missing bread and fruit, my meals weren't that much different than normal. By day three, I began to feel weak and food, once again, started to lose its appeal. I wasn't sure if it was the diet or the cancer.

My fourth day on the diet, I had to have baseline scans for the upcoming clinical trial. I ate a keto-friendly breakfast of muffins I baked with almond flour and stevia. They were friggin' disgusting. Then, as required for the CT scan, I fasted for three hours. Then I realized that the dye they injected me with is made of glucose (another reason people theorize about the correlation between cancer and sugar... the glucose in the contrast fluid is what causes the cancer to light up). By the time the scans were done and I met my sister for dinner, I was feeling a bit weak and light-headed. Now, I'm no scientist, but I figured that the glucose I was injected with probably already took me out of ketosis (if I was even in it in the first place), so I might as well eat normally for dinner. A couple of corn tortillas at my favorite place for enchiladas weren't going to kill me.

Despite the fact that I was starving, I barely got through half the plate. It was delicious, but at the same time terribly unappetizing. I returned to keto-friendly foods for the next 24 hours, and at dinner the next night, I found myself picking at a gorgeous piece of salmon with distaste. The next morning, I headed straight to the bagel store and procured a mini everything bagel with veggie cream cheese. I devoured it. It was delicious. I washed the bagel down with some dark chocolate almond milk and suddenly I felt like myself again. I was back in action.

As much as the science behind all of these 

 individually make sense to me, many of them contradict each other. One says fruit juices are the enemy, another says juices are the answer. One says red meat is the devil, another says bacon is my savior. The fact of the matter is that having late-stage cancer is exhausting - mentally, emotionally, and physically. So, if I can find a little reprieve in a piece of toast with my morning coffee, I'll take it.

In just over two weeks, I'll begin a promising new treatment and until then (and continuously), yes, I'm going to lay off sugar and limit my carbs, but I'm done trying to starve my cancer out. When I explained this to my ever-supportive sister, she said, "Jen, if there really was a definitive food fix... a diet that flat out killed cancer, don't you think every oncologist would be putting their patients on it?" Keep in mind that she was the first person to suggest cutting out sugar. I honestly don't know the answer. What I do know is how to listen to my own body, and right now it's telling me to go eat a nice, juicy peach. 

For more news on cancer updates, research and education, don’t forget to 

Cancer not only wages war on our bodies, but also our relationships with food. Are cancer-fighting diets really the answer?

Jen Sotham

Defining Cancer Survivorship

Oh, the Places You Won't Go: Being Grounded by Cancer

A Life Less Cancery

Food vs. Cancer, or Cancer vs. Food?

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