Don Vaughan

A diagnosis of cancer can be emotionally devastating, but the personal trauma seldom ends there. The overall cost of treatment can be equally catastrophic to a patient’s bank account, especially if that person lacks adequate health insurance, analysts report. It’s not surprising, then, that care-related money issues are frequently cited as the primary cause of personal bankruptcy among families ravaged by cancer.

However, these families don’t have to struggle alone, thanks to organizations that provide free or discounted services and goods to patients battling the disease and struggling to make ends meet.

Total spending for cancer care in the United States was estimated at around $125 billion in 2010 and is projected to increase between 27 and 39 percent by 2020, reported Milliman, an independent actuarial and consulting firm, in a 2017 analysis of care costs specific to breast, lung and colorectal cancers.

When cancer strikes, the financial impact can be immediate. The study, commissioned by Pfizer, tracked the total cost of diagnosis and treatment over a five-year period, including the patient’s out-of-pocket portion, for roughly 35,000 commercially insured people with lung, breast or colorectal cancer. The results revealed that the average health care spending per patient increased from less than $2,000 in the month preceding diagnosis to as high as $25,000 in the month of diagnosis. The patient’s out-of-pocket responsibility similarly spiked dramatically, averaging $1,800 to $2,900 in the month of diagnosis alone.

The cumulative costs can be staggering. According to the Milliman report, total health care spending four years after diagnosis averaged $101,000 for breast cancer, $165,000 for colorectal cancer and $281,000 for lung cancer. The patient’s average out-of-pocket responsibility for that same time period totaled $7,531 for breast cancer, $8,442 for colorectal cancer and $11,180 for lung cancer. That does not include other major costs, such as insurance premiums and expenses associated with transportation, time off work and child care.

“Most of the time these costs are not covered by insurance, so it can be a downward spiral for many,” says Steven Hansen, managing director of Cancer Horizons, an organization that has one of the largest online directories of free products and services for patients with cancer nationwide. “I hear stories every day. People are trying to get better, but they’re also trying to deal with these fundamental lifestyle, cost-of-living-type issues.”

The patients tracked for the report had the benefit of employer-sponsored insurance, which negotiates a lower rate for the medical care provided, and then pays the lion’s share of treatment expenses. Even so, the added expenses associated with diagnosis and ongoing treatment, along with related costs for travel and lost wages, can be financially overwhelming. For those who lack insurance, are self-insured or need access to hospitals or treatments not covered by their insurance, the costs can be dramatically higher. Facing financial hardship can be demoralizing, but help is available, ranging from transportation to and from treatment to legal assistance to scarves and wigs for those who lose their hair due to chemotherapy.

Most assistance organizations require applicants to fill out online request forms. The amount of personal information asked for ranges broadly, but almost all require some proof that the applicant has cancer and is genuinely in need. Sometimes this may come via a Facebook page, but others require a letter from a physician.

People should not be deterred by the paperwork and take advantage of the goods and services available to patients and their caregivers, says Nancy Novack, founder and executive director of Nancy’s List, a nonprofit organization dedicated to assisting patients in need. “Such programs go a long way toward eliminating stress,” she says. “Participation increases the number of people who are on your side and gives you hope.”

Novack and Hansen both established their charitable organizations following a personal experience with cancer. For Novack, it was a successful fight against stage 4 ovarian cancer; for Hansen, it was months of caring for his father after a diagnosis of colon cancer. Both say after realizing the challenges faced by patients with cancer, they decided to fill an obvious need. “This is an extremely underserved market,” Hansen says. “Our sole mission is to provide com-passionate resources for patients with cancer. Everything is driven by the patients.”

Aside from the emotional and financial toll, cancer brings physical side effects, too — hair loss during chemotherapy; brittle nails; rough, flaky or discolored skin; sores and scars. Look Good Feel Better offers complimentary group, individual and online sessions that include lessons on skin care and cosmetics, nail care, wigs and turbans, accessories and styling to help men and women with cancer regain their self-esteem. To learn more, call the 24-hour hotline at 800-395-5665 or visit lookgoodfeelbetter.org. For men’s services, visit lookgoodfeelbetter.org/programs/men.

Having cancer doesn’t have to mean the end of having fun. Several organizations provide free experiences such as camping retreats and outdoor challenges that bring those battling cancer together with people who have gone through it.

Camp Good Days and Special Times provides free camp services for children who have cancer, have a parent or sibling with cancer, or lost a parent or sibling to cancer. Weekend adult retreats are also offered. To learn more, visit campgooddays.org.

Camp Mak-A-Dream is free to cancer survivors between ages 18 and 40. Campers can participate in activities like swimming, horseback riding, field sports, pottery, weaving and jewelry making. The camp also offers adult retreats. To learn more, call 406-549-5987 or visit campdream.org.

First Descents provides outdoor adventures of up to week, at no charge, for young adults aged 18 to 39 years affected by cancer. To learn more, call 303-945-2490, email info@firstdescents.org or visit firstdescents.org.

Project Koru brings the healing power of community and the outdoors for cancer survivors, who can participate in surfing, stand-up paddling, outrigger canoeing and snowboarding. To learn more, call 415-617-5678, email info@projectkoru.org or visit projectkoru.org.

The Hole in the Wall Gang Camp, founded by actor Paul Newman in 1988, was created to help seriously ill children celebrate fun and friendship for free. To learn more, visit holeinthewallgang.org.

Keeping family and friends updated on health can be overwhelming for patients. However, these resources try to make this job easier by keeping communication in one place.

CaringBridge lets patients post mass updates to everyone they choose to include in a private space; the organization provides emotional support, too. To learn more, call 651-789-2300 or visit caringbridge.org.

Lotsa Helping Hands simplifies the process of organizing help. Family and friends sign up to make meals, give rides to medical appointments, or stop by to say hello. To learn more, email info+contactus@lotsahelpinghands.com or visit lotsahelpinghands.com.

For many patients with cancer, as well as survivors, exercise such as yoga can benefit both body and mind. Certain fitness programs help alleviate physical side effects such as lymphedema, while others reduce stress and anxiety.

Cancer Support Community offers free fitness programs, cooking classes and nutrition lectures. To learn more, call 888-793-9355 or visit cancersupportcommunity.org/locations.

Livestrong at the YMCA offers free programs around the country. To learn more, call 855-220-7777 or visit livestrong.org/what-we-do/program/livestrong-at-the-ymca.

Yoga Bear provides a list of yoga studios around the country that offer free or reduced-cost classes to patients undergoing treatment. To learn more, visit yogabear.org.

The following organizations offer free headwear such as hats, scarves and wigs to patients who experience hair loss, a common side effect of chemotherapy.

• The Breast Friends Hat Project: Call 888-386-8048 or visit breastfriends.org. • EBeauty Community: Email alex@ebeauty.com or visit ebeauty.com. • Friends Are By Your Side: Call 856-582-6600, email wigs@fabys.org or visit friendsarebyyourside.com. • Good Wishes: Call 888-778-5998, email info@ goodwishesscarves.org or visit goodwishesscarves.org. • Heavenly Hats Foundation: Call 920-362-2668 or visit heavenlyhats.org. • Lolly’s Locks, call 240-428-1984: Email info@lollyslocks.org or visit lollyslocks.org.

Some local affiliates of Susan G. Komen distribute free wigs. Call your local chapter to see if they offer wigs in your area.

Patients undergoing active treatment likely will not have the strength or feel up to doing household chores and cleaning. That’s where Cleaning For A Reason comes in. Created in 2006, the nonprofit organization works with maid services throughout the United States and Canada to offer free housecleaning. To learn more, call 877-337-3348, email info@cleaningforareason.org or visit cleaningforareason.org.

Patients with cancer often find themselves at odds with insurers or face other disputes over access to coverage or benefits. This process of appeal can be daunting and stressful, but Cancer Legal Resource Center offers free information that may help. To learn more, call 866-843-2572, email CLRC@drlcenter.org or visit cancerlegalresources.org.

Treatment for cancer is stressful enough, but arranging and affording transportation to and from a hospital or cancer center can be trying, too. Sometimes treatment must be received at a care facility many miles away or in another state, a situation that can cause significant financial hard-ship. The following are some of the organizations that offer free ground or air transportation for patients.

The Air Care Alliance allows patients in need to reach out to all the charitable organizations offering free air transportation at once or specific member organizations. To learn more, call 888-260-9707, email mail@aircarealliance.org or visit aircar-ealliance.org.

The groups listed below can help, as well.

• AeroAngel: Call 303-817-7355, email mark@aeroangel.org or visit aeroangel.org. • Children’s Flight of Hope: Call 919-466-8593, email info@cfoh.org or visit childrensflightofhope.org. • Corporate Angel Network: Call 914-328-1313, email info@corpangelnetwork.org or visit corpangelnetwork.org. • The American Cancer Society’s Road to Recovery: Call 800-227-2345 or visit cancer.org/treatment/support-programs-and-services/road-to-recovery.html. 

Articles

Organizations offer free services and goods for patients with cancer. 

Help Doesn't Cost a Thing

“After a cancer diagnosis, you can go into a shell and look for what is comforting and familiar. That was food for me. I wish I had the forethought to have released my anxiety with a walk instead of overeating.” — SUSAN YANKEE - PHOTO BY ANGELA CHICOSKI

Susan Yankee, an opera singer and voice teacher in Madison, Connecticut, was diagnosed with breast cancer in February 2015 at age 48. She had a single mastectomy and reconstruction, but didn’t need chemotherapy, and today takes the hormonal drug tamoxifen daily.

Yankee admits to being overweight at the time of her diagnosis. She knew she needed to lose weight, but felt overwhelmed by her cancer and started to “stress eat” to help her cope emotionally. As a result, she gained 10 pounds over the next six months. “After a cancer diagnosis, you can go into a shell and look for what is comforting and familiar,” Yankee says. “That was food for me. I wish I had the forethought to have released my anxiety with a walk instead of overeating.”

Yankee is far from alone, oncologists report. In fact, as the obesity epidemic in the United States worsens, cancer specialists are seeing more and more patients who are either overweight or obese at the time of diagnosis. This is concerning, they say, because obesity can adversely affect treatment outcomes, influence mortality and increase a patient’s risk of recurrence.

The good news, experts say, is that it’s never too late or impossible to lose weight and, even after a cancer diagnosis, trimming down may bring many lasting health benefits. Studies show that simple, common-sense plans for healthy eating and exercise — particularly those that are supervised through programs aimed at survivors of cancer &mdash; are associated with lower cancer risks, and for those with cancer, a smaller risk of recurrence. Whether these interventions are truly responsible for this decreased risk is not proven, but experts assume it to be the case. There are several controlled trials in progress that are formally testing whether exercise or diet aimed at both conditioning and weight loss could have a favorable impact on cancer risk.

Obesity is measured using body mass index (BMI), which is calculated by dividing a person’s weight in kilograms by their height in meters squared. A BMI of 25 to 29.9 is considered overweight; 30 or higher is considered obese. According to a report in the 

Journal of the American Medical Association

, in the years 2013-2014, 35 percent of American men and more than 40 percent of women met the clinical definition for obesity. Rates of obesity are also rising among American children, of whom around 17 percent are considered obese, reports the National Cancer Institute (NCI), quoting a 2007-08 National Health and Nutrition Examination Survey.

Excess weight can contribute to a variety of health issues, including heart disease, hypertension and diabetes. It can also increase one’s chances of developing certain types of cancers, including breast, endometrial, kidney, gallbladder, esophagus, pancreas, thyroid and colon, multiple studies show. In fact, the results of a 2003 study published in 

estimated that the proportion of all deaths from cancer attributable to overweight and obesity in U.S. adults ages 50 or older may have been as high as 14 percent in men and 20 percent in women. Observed the authors, “Under the assumption that these relations are causal, the public health implications for the United States are profound: More than 90,000 deaths per year from cancer might be avoided if everyone in the adult population could maintain a body-mass index under 25.0 throughout life.”

The exact mechanism behind this phenomenon is not entirely understood, but researchers believe a number of factors may play a role. One of the strongest contenders is inflammation, notes Jennifer Griggs, M.D., professor of medical oncology and of health management and policy at the University of Michigan in Ann Arbor. “Obesity is considered a chronic inflammatory state,” Griggs explains, “and an inflammatory state may be pro-carcinogenic.”

Certain hormones are another suspected mechanism. The aromatase in fat tissue converts androgens to estrogen, and this elevated estrogen level has been associated with a higher risk for breast, endometrial and other forms of cancer, reports the NCI. Fat cells also produce hormones called adipokines that may stimulate tumor growth, and are suspected of directly or indirectly affecting other tumor-growth regulators.

Insulin and insulin-like growth factor-1 are also under study. Commonly found in higher levels in the blood of obese people, these compounds are suspected of promoting the development of certain tumors, including kidney and colorectal cancer, reports the American Institute for Cancer Research.

The negative influence of obesity reaches further than increased cancer risk — excess weight can also affect treatment in a variety of ways, researchers report. One of the most important issues on this front is chemotherapy dosing. Until recently, oncologists commonly prescribed the same amounts of chemotherapy drugs to obese patients as they did to more slender patients, potentially underdosing their larger patients and negatively affecting treatment outcomes. “The concern was that the risk of toxicity associated with chemotherapy could be higher in obese patients because they were getting much larger doses than non-obese patients,” explains Joseph Sparano, M.D., associate director for clinical research at the Albert Einstein Cancer Center in New York.

The consequences of underdosing can be significant. A 2013 review by Gary H. Lyman and Alex Sparreboom, published in the journal Nature Reviews Clinical Oncology, found that a 20 percent reduction in chemotherapy dosing lowered remission and cure rates by half in animal tumor models. Another study, published in 2015 in the journal JAMA Oncology, found that a group of women with ovarian cancer, including some who were overweight and some who were not, had a 35 percent higher risk of mortality if they received less than 85 percent of the chemotherapy dose they should have gotten based on their weight, compared with women who received adequate dosing.

In 2012, the American Society of Clinical Oncology published revised clinical practice guidelines that encouraged oncologists to measure chemotherapy drugs based on a patient’s actual size and weight rather than ideal weight after studies showed that this practice did not cause extra side effects.

Obesity can affect outcomes in other ways, as well. For example, a 2013 study published in the 

 Institute suggests there could be a reactivation of dormant tumor cells across levels of fat, as evidenced by the fact that, in animals, where visceral fat is present, both circulating tumor cells and lung cancer metastasis are more likely to be seen. Additional evidence comes from the observation that receptors for growth factors that are elevated with obesity are commonly expressed on circulating tumor cells. The same study noted, too, that fat tissue can dramatically affect the metabolization of chemotherapy drugs, and thus influence efficacy and prognosis.

When cancers are linked to obesity, that doesn't always spell a negative impact on prognosis, however. A 2016 study published in the 

 found that, while obesity is a risk factor for clear cell renal cell carcinoma (RCC), a high BMI is a prognostic factor for improved survival in patients with metastatic RCC who have received targeted therapy. Several hypotheses have been proposed for this paradox, including the theory that longer survival among obese patients is due to a less aggressive disease subtype.

Obesity may also play a significant role in cancer recurrence, researchers suggest. It’s an issue of particular concern for certain breast cancer patients, because a higher BMI at the time of diagnosis has been associated with poorer outcomes in terms of recurrence and survival, says Heather Greenlee, N.D., Ph.D., assistant professor of epidemiology at the Columbia University Mailman School of Public Health in New York. “It appears that if women gain a substantial amount of weight following a breast cancer diagnosis, that also is associated with poorer outcomes,” Greenlee notes. A 2012 study published in the journal Cancer affirms this concept, noting that overweight and obese women diagnosed with early-stage, hormone receptor-positive breast cancer and treated with standard chemotherapy and hormonal drugs have a higher risk of recurrence and lower survival rates.

An issue of concern often unforeseen by patients with cancer is weight gain during treatment. Patients often assume that they will lose weight during their treatment regimens, and are greatly surprised when the opposite occurs. “We tend to think of cancer chemotherapy as causing weight loss, but when that happens, it’s usually from the cancer itself,” notes Griggs.

Weight gain during treatment is fairly common, especially among breast cancer patients, but researchers are unsure of the exact mechanism behind it. “One hypothesis is that women reduce their physical activity during treatment,” Greenlee says. “It also could be an effect of the drugs themselves. Likely, it’s a combination of the two.”

There is evidence that a woman can lose lean body mass during treatment, slowing her metabolism and, thus, her ability to burn calories; if treatment induces menopause, that may also cause weight gain.

“Cancer disrupts people’s lifestyles,” adds Sarah Kiser, M.S., R.D., a clinical oncology dietician with Cancer Treatment Centers of America at Western Regional Medical Center in Goodyear, Arizona. “There can be grieving and stress involved, along with life changes. Additionally, treatment can cause side effects that might result in choosing less-than-desirable foods, such as taste changes. If a patient is experiencing taste changes, they might crave comfort foods over a well-balanced diet.”

When weight gain does occur, it can be difficult to lose, adds Griggs. “It’s not their destiny to gain weight, but when patients think they’re losing weight and people want to help by bringing them meals and taking them out, they actually put on 10 pounds,” she observes. “That 10 pounds can be very hard to lose, whereas if they lose weight on chemotherapy, they are likely to gain that back.”

Yankee knows how difficult post-treatment weight loss can be. Upon enrolling in the Survivorship Clinic at Smilow Cancer Hospital at Yale New Haven, in Connecticut, she was placed in the LEAN Study, which looked at how weight affects survivorship. Initially, she was part of the control group, which meant she received only a brief meeting with a nutritionist and a pamphlet on healthy eating. Yankee continued to gain weight until she was provided with ongoing nutritional counseling and weight-loss tools, such a food journal, pedometer and weight-loss program book.

“Getting up to 10,000 steps a day was difficult, especially since the first week of the program I reopened stitches from my DIEP flap revision (the breast reconstruction) and needed to be careful about my exercise,” Yankee says. “But that same week, I lost three pounds from the food journaling and portioning alone. At the end I lost 25 pounds, and have lost five additional pounds since then.”

The program worked for many others in the study too, and its authors say their findings support the idea that weight loss interventions should be used to improve diet among breast cancer survivors.

Kiser, too, encourages all cancer patients to eat with nutrition in mind as they go through their cancer journeys. She recommends a diet rich in fruits, vegetables, whole grains, nuts and seeds, and light on red and processed meat such as bacon and sausage. She also suggests limiting saturated fatty acids, which come primarily from animal foods.

“I think every patient who faces a cancer diagnosis is interested in making dietary changes of some kind,” Kiser says. “It can be a positive point of change in someone’s life.”

Obesity can negatively affect cancer treatment outcomes, trigger disease recurrence and shorten longevity. Organized weight loss programs and exercise can help patients protect themselves.

Size Matters: Examining Obesity's Role in Cancer Outcomes

Most cancer-themed graphic novels are aimed at an adult readership, but there are a great many cancer-related picture books written specifically for children. Some are for young people undergoing treatment for cancer, while others are designed to help kids cope when cancer affects a loved one or playmate.

“My Cancer Days,” written by Courtney Filigenzi and illustrated by Nicole Tadgell, for example, is about a little girl going through cancer treatment and the ups and downs she experiences along the way. Like all cancer patients, she feels a gamut of emotions, and comes to understand that her feelings are a normal part of dealing with a very difficult situation.

“The Long and the Short of It: A Tale About Hair,” written by Barbara Meyers and Lydia Criss Mays and illustrated by Shennen Bersani, explores the issue of hair loss among young cancer patients. It tells the story of Isabel, who wants her hair to be longer, and her friend Emma, a cancer patient who lost her locks during treatment. Isabel eventually realizes she can benefit others by giving away her hair, while Emma is buoyed by the kindness of people who want to help.

Coping with a friend or loved one’s cancer is a common theme in books written for young people. Filigenzi’s awardwinning book “Let My Colors Out,” illustrated by Bersani, is about a young boy who uses colors to express the range of emotions he experiences as his mother undergoes treatment for cancer. As in “My Cancer Days,” the boy comes to realize that he doesn’t have to feel guilty about his feelings.

A more personal example of this genre is “Our Mom Is Getting Better,” by siblings Alex, Emily and Anna Rose Silver, who also wrote and illustrated “Our Dad Is Getting Better.” “Our Mom Is Getting Better” begins with their mother finishing treatment for breast cancer, and goes on to explore a variety of important survivorship issues.

Children's books about cancer can be found for all ages, from preschool through teen years, and many are also available as e-books. The American Cancer Society offers numerous titles for children through its publishing division. For more information, visit cancer.org and search for the phrase “children’s books.”

Cancer-related picture books can help children better understand and face cancer. 

Med-Time Stories: Picture Books for Children With Cancer

MARISA ACOCELLA MARCHETTO felt there was no better way to describe her cancer journey than through a graphic novel, Cancer Vixen.- PHOTO BY SUSAN FARLEY

When illustrator Marisa Acocella Marchetto was diagnosed with breast cancer in May 2004, her editor at Glamour magazine asked if she would like to write about it. Acocella Marchetto immediately said yes.

Over the next 11 months, she diligently documented the physical and emotional ups and downs of her treatment journey via sketches, photos and tape recordings. “Sketching to me is kind of a nervous tic,” Acocella Marchetto says. “I’m always drawing.” The resulting chronicle was a six-page graphic memoir titled “Cancer Vixen.”

The New York Times profiled Acocella Marchetto when the issue of Glamour featuring “Cancer Vixen” hit the stands, and it wasn’t long before book publishers came calling. Acocella Marchetto signed with Alfred A. Knopf and expanded “Cancer Vixen” into a 212-page hardcover graphic novel, later republished in paperback by Pantheon Books.

With the publication of “Cancer Vixen,” Acocella Marchetto joined a growing number of cartoonists and illustrators who have chosen to tell their cancer stories through a medium associated by many with spandex-wearing superheroes. However, in recent decades, the graphic novel has matured into a powerful and evocative form of storytelling, especially when the subject is as life-changing as a diagnosis of cancer.

It’s a medium that can prove therapeutic not only for those who create the works, but for readers who can relate to the storylines because of their own experiences with cancer.

Cancer may not seem like an acceptable topic for comics, but many of the medium’s most popular creators would disagree. Tom Batiuk, the creator of the daily comic strip "Funky Winkerbean," which boasts an estimated 50 million readers, wrote two separate storylines involving character Lisa Moore’s experience with breast cancer. In the first, Lisa went through a grueling treatment regimen that included a mastectomy, but ultimately survived the ordeal. Several years later, she was devastated to learn that her cancer had returned. She fought as hard as she could, becoming a vocal advocate for cancer research in the process, but ultimately lost her battle. Batiuk’s syndicate supported his decision to have Lisa die, but many readers were outraged, telling the cartoonist they felt betrayed.

More recently, comic book writer Jason Aaron incorporated breast cancer into the storyline of "Thor," one of Marvel Comics’ most popular titles. The original Thor was found unworthy of wielding the mighty Mjolnir (Thor’s hammer), and the mantle was passed to Dr. Jane Foster, Thor’s ex-girlfriend. But there’s a catch: Foster is battling breast cancer, and every time she transforms into the Asgardian superhero, her condition worsens.

Cancer has only occasionally been addressed in comic strips and comic books, but is the subject of a surprising number of graphic novels. Among the first was “Our Cancer Year,” written by Harvey Pekar and Joyce Brabner and illustrated by Frank Stack. Published in 1994, the book-length comic explores a difficult year in the couple’s life, including Pekar’s battle with lymphoma and Brabner’s struggles as his overwhelmed caregiver.

“Our Cancer Year” won the 1995 Harvey Award for best graphic novel and opened the door for others to come, including “Mammoir: A Pictorial Odyssey of the Adventures of a Fourth Grade Teacher With Breast Cancer,” by Tucky Fussell (2005); “Cancer Made Me A Shallower Person: A Memoir In Comics,” by Miriam Engelberg (2006); “Mom’s Cancer,” by Brian Fies (2006); “Cancer Vixen” (2006); “Relatively Indolent But Relentless: A Cancer Treatment Journal,” by Matt Freedman (2014); “Probably Nothing: A Diary of Not Your Average Nine Months,” by Matilda Tristram (2014); and “The Story of My Tits,” by Jennifer Hayden (2015).

JENNIFER HAYDEN saw her graphic novel as 'a vessel that would hold all my life.'

Connected only by their subject matter, each book explores the cancer journey in unique and individual ways. “Cancer Vixen,” for example, is specific to Marchetto’s experience with breast cancer; it begins with the discovery of a lump in her chest and concludes with the successful completion of her treatment. “Mom’s Cancer,” which originated as a serialized online comic, is the story of Fies’ mother’s battle with lung cancer with metastases to the brain, told from Fies’ perspective as her oldest child. In “Mammoir,” Fussell incorporates a touch of fantasy as she relates the story of her breast cancer. And “The Story of My Tits” is a full-on autobiography that includes, among other incidents, Hayden’s diagnosis of breast cancer and her decision to undergo a bilateral mastectomy.

“I serialized Mom’s Cancer online because I wanted to get the story out, it was easy and cheap, and I didn’t know how else to do it,” says Fies of his decision to tell his story in cartoon form. He landed a book deal with Abrams ComicArts after “Mom’s Cancer” was nominated for an Eisner Award, named after artist Will Eisner, widely acknowledged as the father of the contemporary graphic novel.

Hayden went the graphic novel route because she didn’t consider herself a good enough writer to relate her story as a journalistic work of nonfiction. “When I started reading graphic novels, I realized that this, to me, was a vessel that would hold all my life,” she explains. “I thought it was the only way to tell abreast cancer story in which I could be funny and sad and silly — everything I wanted to be.” Before putting pen to paper, Hayden spent a year reading a wide variety of graphic novels. It took her another eight years to write and draw “The Story of My Tits.”

The time-consuming process of writing and illustrating their stories ran the creators through a gauntlet of emotions, though most found the experience cathartic. “I hadn’t intended 'Mom’s Cancer' to be therapeutic for me, but it was,” observes Fies. “Telling our story made me a careful observer and note taker. No matter what happened, I always had another pair of eyes watching dispassionately over my shoulder. It gave me an outlet to express my worry and stress. It also gave me control over something, when so much else was out of my control. I couldn’t heal Mom, but I could tell her story as best I could.”

Reports Fussell, “Writing and drawing ‘Mammoir’ was very cathartic, yet also very difficult. Still reeling from having been fired from my job as a teacher, I started to relax into the experience of writing and drawing daily. Probably the hardest part was publishing and publicizing the book.”

Acocella Marchetto also found the process therapeutic. “Instead of internalizing the experience, I was externalizing it and putting it on the page, finding the humor and making myself laugh,” she says. “I thought if I could make myself laugh, I could make other people laugh.”

Acocella Marchetto is somewhat unique regarding the humor she presents in “Cancer Vixen,” much of which derives from interactions with her mother (whom she calls Smother), friends and others. In contrast, there’s no humor to be found in Pekar and Brabner’s “Our Cancer Year.” The story unflinchingly shows the couple’s relationship in a downward spiral as Pekar suffers through a debilitating treatment regimen and Brabner deals with difficult issues in her own life. Yet, while very different in tone and style, “Cancer Vixen” and “Our Cancer Year” equally explore their individual cancer stories in a deeply personal and heartfelt manner.

The one thing almost all graphic novels about cancer seem to have in common is the no-holds-barred way in which they describe the cancer experience. It’s all on the page: the good, the bad and the ugly. “I just think, if you’re not going to tell the truth, why bother?” says Acocella Marchetto. “People respond to authenticity, and I don’t like it when I’m reading something and I feel like the author is withholding the truth.”

Fies agrees, noting, “I knew the story would only be worthwhile if I were as honest as I could be. It’s the difference between making up a story and reporting on something you’ve lived. Real life provides textures that only someone who’s been through it would catch and relate to. That was the point of doing ‘Mom’s Cancer’ — sharing our experiences, drawing a map for someone following us down the same path.”

Not everyone may be comfortable with that level of disclosure, though, so prospective readers need to consider whether they’ll feel empowered or frightened by naked honesty about the most difficult details of a cancer journey. Fussell faced questions about that issue as she worked to get “Mammoir” published, and was told by an editor that her artwork was too “real” and might make people uncomfortable. The conversation only left her more convinced that readers would benefit from her book.

BRIAN FIES was gratified to learn that his book was being used to teach nurses about family dynamics during the cancer experience.

Hayden has heard similar sentiments. “One reader said in a review online that, though she’d liked my book, passages about the cancer almost made her pass out,” she recalls.

Like Fussell, Hayden read that as a confirmation of the power of the graphic novel. “It is graphic,” she says, “and, in that sense, it can get more into the nitty gritty of a physical experience than just plain writing can.”

Creating a book-length memoir in graphic form is never easy, but the challenges are significantly more when the story is about cancer, especially your own. Acochella Marchetto, for example, says her greatest challenge was staying awake at the drawing board on the days she received chemotherapy.

Hayden’s challenge was chronicling certain negative relationship experiences that occurred during her life. By comparison, she says, writing about her cancer was far less stressful. “I was living with ghosts and reviving them,” she explains. “When I got to the breast cancer part of the story, it was a relief. It was easier than writing about my mother’s illness, my parents’ marriage or my relationship with my father. All of that really hurt.”

Ultimately, the heartfelt, honest and factually accurate nature of the books has resonated strongly with readers. “I still get letters about it,” reports Acocella Marchetto, who has donated profits from the book to her Marisa Acocella Marchetto Foundation, based at the Mount Sinai Beth Israel Comprehensive Cancer Center West in New York, which has raised $1 million so far to help empower and care for uninsured and underinsured women with breast cancer. “I feel like it’s an ongoing story because cancer is an ongoing issue. Also, it’s a tale of hope and positivity and inner strength. It’s a story (showing that) how you perceive yourself can affect your outcome.”

Fies notes that one of the first emails he received regarding “Mom’s Cancer” was from a nursing instructor in Australia who wanted to include pages from the online series in her coursework. “She wanted her students to understand some of the family dynamics they might face when serving remote communities in the Outback,” he says. “That blew me away. I intellectually understood the instantaneous worldwide reach of the Web, but hearing from someone like that on literally the other side of the planet was powerful. These stories are universal in ways I didn’t suspect.”

“I’ve had women write and say, ‘I’ve just come home from my mastectomy and I’m reading your book and feeling so much better,’” adds Hayden. “I think women read ‘The Story of My Tits’ and feel as if there’s a sisterhood out there. (A close friend) who recently received a bilateral mastectomy read the book and said it gave her a sense of solidarity and power, and made her realize it wasn’t the end of the world.”

Patients who gain that feeling of kinship and catharsis by reading such works may find themselves inspired to write about their own cancer experiences, something many experts agree can be a valuable therapeutic exercise.

With many cancer patients turning to personal journaling as they struggle with the ups and downs of their medical journeys, a growing number of hospitals and cancer centers around the United States have instituted writing programs specifically designed to help patients cope with their disease and treatment. Smilow Cancer Hospital at Yale-New Haven, in Connecticut, offers one such program. Launched in 2013, it is run by Charlotte Evans, a retired writer and editor with The New York Times, and directed by Dana Shaffer, coordinator of the hospital’s Complementary Services Art Program. Another program, Visible Ink, through which patients with cancer can work individually with writing mentors, is run by Memorial Sloan Kettering Cancer Center, in New York.

“I’ve always felt that writing could be a useful tool to get you through a difficult time, and there is a lot of evidence to support the theory that writing is helpful,” observes Evans, who leads the weekly classes at Smilow.

Evans begins each session with a segment she calls “Ripped From the Headlines,” in which she discusses recent newspaper, magazine and television items related to cancer. A discussion about the writing process is next, followed by patients reading their most recent essays, which are written at home.

“The expectation is that everyone will read,” Evans says. “It’s a privilege to sit and listen to others read about something so intimate, so it’s only fair that everybody take a turn.” Afterwards, participants offer comments and constructive criticism.

According to Evans, patients can write about anything they wish, but, almost always, their work comes back to their cancer and treatment. As to why patients join the program, she observes, “I think from a layman’s perspective, people just want to tell their stories. But beyond that, it’s a way of getting out something that is troubling them. They are afraid. They are in pain. Some of them have written about their fear of dying or the impact of their disease on family and others. I think it’s helpful for them to be able to get this out in a safe setting.”

Based on her experience at Smilow Cancer Hospital, Evans encourages patients to participate in a writing program if it’s available at their treatment center.

“I would say give it a try, because you may not know what’s inside you that wants to get out in word form,” she says. “With proper feedback, you can write, even though you don’t think you can, and you might surprise yourself as to what comes out on paper.”

Telling cancer stories through comics and graphic novels can be therapeutic for writers, illustrators and their audiences.

Don Vaughan

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