Mesothelioma Survivor Driven by Family, Active Lifestyle

Attending a dinner party with friends became the motivation Darlene Micciche needed while recovering from cytoreductive surgery and hyperthermic intraperitoneal chemotherapy (HIPEC).

“We live in a development where we’re friends with a lot of other couples here,” Micciche, a peritoneal mesothelioma survivor from Rochester, New York, told Asbestos.com. “And there’s this restaurant about 45 minutes from us that was voted the best new restaurant in the United States.”

The reservation — booked months in advance — was for seven couples, the entire occupancy of FLX Table in Geneva, New York.

Micciche’s surgeon, Dr. John Kane, told her it would take about six weeks to recover from the aggressive surgery. She was out of the hospital in 11 days and remained as active as possible at home the following weeks.

The dinner party was exactly six weeks and two days after her surgery, and Micciche was there with a smile on her face.

“I told everyone I was going to make that dinner,” she said. “I was told six weeks and was determined it wouldn’t be a day longer. I was able to go and have a nice dinner and have a good time.”

A week later, on Halloween, Micciche was able to go trick-or-treating with her grandson, who she watches on Tuesday nights and Wednesdays during the day.

“I walked all over the neighborhood with him and he kept telling me he loved me,” she said. “Nothing better!”

Less than two months after surgery, peritoneal mesothelioma survivor Darlene Micciche was able to go trick-or-treating with her 3-year-old grandson.

Less than two months after surgery, peritoneal mesothelioma survivor Darlene Micciche was able to go trick-or-treating with her 3-year-old grandson.

Peritoneal Mesothelioma Diagnosis Came as a Relief

Micciche, 60, had multiple gastrointestinal surgeries prior to her cytoreductive (debulking) procedure on Sept. 9, 2017.

It was a surgery to remove scar tissue on her stomach that revealed several spots on her peritoneum, or the lining of the abdomen.

“My [gastroenterologist] had done a surgery on me a year and eight months before that and knew those spots weren’t there at that time,” Micciche said.

Micciche’s friend, neighbor and GI specialist, Dr. Anthony Baratta, was there to greet her when she woke up from surgery.

“When [Baratta] came into the recovery room, I could tell something was very wrong,” she said. “I could just tell from the look on his face.”

Micciche’s doctors were certain the spots were cancer, but were unsure of the exact type of malignancy.

“They said it was adenocarcinoma, either of the small intestine or the pancreas,” Micciche said.

After numerous tests, doctors ruled out small intestine cancer — the more favorable of the two options. Micciche was later told it was stage 4 pancreatic cancer that had spread to her peritoneum.

It wasn’t until a second opinion at Strong Memorial Hospital in June 2017 that doctors finally determined the true diagnosis: Peritoneal mesothelioma.

“For two weeks, I thought I had stage 4 pancreatic cancer,” Micciche said. “It was terrible. I had some uncomfortable conversations with my husband. It was just awful.”

According to the American Cancer Society, the one-year survival rate for all stages of pancreatic cancer is 20 percent. The five-year survival rate for stage 4 pancreatic cancer is 16 percent for those treated with surgery and just 1 percent for patients not eligible for surgery.

Peritoneal mesothelioma carries a significantly better prognosis. About half of peritoneal patients treated with cytoreductive surgery and HIPEC live longer than five years.

“When they finally told me it was mesothelioma, I actually felt relieved,” Micciche said. “That was better than the diagnosis we originally thought I had. The whole thing was just a giant roller coaster of emotions.”

In Good Hands with Dr. Kane

With the cytoreductive surgery and HIPEC combination not available in Rochester, Micciche had to look elsewhere. She connected with Kane at Roswell Park Comprehensive Cancer Center in Buffalo, New York.

“We looked him up before we went because my oncologist [in Rochester] said you have to be comfortable with your surgeon,” she said. “We ended up loving him from the start.”

A big part of that was confidence in Kane’s experience, with more than 200 debulking surgeries with HIPEC under his belt.

Micciche’s surgery took 10 hours. Kane never left the operating room.

“He was just awesome,” she said. “The nurse would come out and update my husband on the phone every two hours since it was such a long surgery.”

Kane removed Micciche’s ovaries and peritoneum and scraped cancerous growth off her diaphragm, liver and small intestine. A 90-minute heated chemotherapy session followed.

Her first scan in December came back cancer-free. She’ll be back in March for another, with quarterly scans for the next three years.

Kane told Micciche if the cancer returns after two years, he’ll perform another cytoreduction and HIPEC.

“He was honest with me and said that in most cases you either have a zero percent chance of it coming back or a 100 percent chance,” she said.

Family, Friends and Faith Played a Part During Recovery

After her diagnosis, all Micciche could think about was her husband, her parents and her 3-year-old grandson.

“I wasn’t really scared for myself. Maybe it was because I felt, if I died, I was going to go to a better place,” she said. “The worst part was worrying about them.”

Micciche attended Catholic grade school and high school, but admits she doesn’t go to church regularly.

“I have to say that my faith really got me through,” she said. “I prayed every single night and had everybody praying for me, and I really feel that’s what helped my prognosis.”

Darlene Micciche with her husband, Mike, and grandson, Camden, at Darlene's 60th birthday party.

Darlene Micciche with her husband, Mike, and grandson, Camden, at Darlene’s 60th birthday party.

Friends also played a large part in Micciche’s speedy recovery. They started an online meal train to organize dinners and make sure she always had a nice meal.

“It was so helpful because my husband doesn’t cook and I couldn’t do it,” she said. “All my friends signed up for dinners, and every day someone came with dinner. I always had leftovers the next day for lunch. It really took the pressure off.”

Micciche’s friends also assisted with medical needs, such as giving her a daily shot of heparin to prevent blood clots.

“I just couldn’t put a needle in myself and I couldn’t let my husband to do it, so friends of mine — two that are doctors, two friends that are nurses and a friend that’s a [physician assistant] would come over every day and give me that shot,” Micciche explained. “That was a really helpful thing because I was so scared to do it myself.”

The active lifestyle Micciche kept before her diagnosis and surgery hasn’t stopped. She still attends dinner parties, takes out the family boat, vacations at their property in Florida, and spends as much time with her grandson as possible.

“I look forward to watching my grandson every week,” she said. “He exhausts me, but I love every minute of it.”

Benefits of Sharing Your Mesothelioma Story

For thousands of years, humans have shared stories through speaking, pictures and writing.

Listening to and sharing stories is how we educate and entertain our children, bond with friends, grieve our losses and celebrate our joy. Sharing stories is how we make sense of the world around us and process new information to create our own personal narrative.

Many people find comfort and a sense of connectedness when they share the story of their wedding day, the birth of their child or a big career move.

Sharing personal accounts can also help us cope with traumatic life events such as the loss of a loved one or a cancer diagnosis. Events that have a big impact on us need to be processed and integrated into our new reality.

Research in the field of linguistics and psychology shows sharing stressful life events such as a mesothelioma diagnosis can benefit us physically and emotionally.

When Talking About Cancer Was Socially Unacceptable

Until about 40 to 50 years ago, cancer survivors rarely felt they had permission or an opportunity to share their cancer experiences.

It was considered taboo to discuss a diagnosis with family members or close friends.

At the time, even mentioning the word cancer was considered socially unacceptable. Many simply referred to it as the “Big C.”

The rapid increase of cancer support groups in the 1980s finally allowed cancer patients and caregivers an opportunity to talk about their cancer journey and give and receive support from others going through similar experiences.

Newly diagnosed cancer patients are usually eager to talk to survivors who have already received treatment and experienced advanced symptoms and side effects.

Reasons to Share Mesothelioma Stories

We can share cancer stories orally or in written form. There are many benefits — and a few risks — to sharing experiences and inner thoughts and feelings with others.

Reasons a person may want to share their story include:

  • Providing medical history to health care providers. Many mesothelioma patients find they will recount how they were diagnosed and treated many times to their health care team. A primary care physician or family doctor may not be familiar with mesothelioma symptoms or treatment options, so a patient may have to educate them on the specifics of the cancer and what to look for should recurrence or progression occur.
  • Venting about negative emotions or experiences. Emotions such as anxiety, fear, stress and sadness can get jumbled in our heads in a way that feels disorganized and overwhelming. Keeping a journal or talking to a supportive listener are good ways to vent about negative thoughts and feelings.
  • Celebrating treatment successes. Many mesothelioma patients can’t wait to share good news with others. Telling loved ones about completed chemotherapy treatments or a successful surgery is a great way to spread joy and help everyone focus on positive moments.
  • Educating and supporting others. Most newly diagnosed mesothelioma patients and their caregivers are eager to hear stories from survivors to get perspective. Some mesothelioma patients find it rewarding to share their own treatment experience as a way of giving back and providing hope to others.
  • Searching for and expressing the meaning of the cancer journey. Major events such as marriage, having children and the loss of a loved one are woven into our life story. These events shape our values, worldview and hopes and dreams. Sharing a cancer experience can help a patient feel more deeply connected with others or with their spirituality. Some mesothelioma survivors form a new, positive meaning to life after a cancer diagnosis.
  • Informing co-workers or loved ones about health issues and asking for help. Coping with mesothelioma treatment isn’t easy. Patients may want or need help from family members, friends or co-workers. The more this inner circle knows about what a patient is going through, the better equipped they will be to offer the right kind of help or support.

Share Your Story

Are you or someone in your family a mesothelioma survivor or caregiver? Tell us how this cancer has impacted your life.

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Risks of Sharing Cancer Stories

There are many benefits to sharing a cancer experience, but it is important to know potential risks.

As a mesothelioma patient shares challenges, fears and successes, they could face very personal questions, unsolicited treatment or diet advice or even judgmental comments.

While most people intend to be supportive, some mesothelioma patients have shared their personal cancer stories and not received the type of support they wanted.

Cancer chat rooms and support groups are a safe place to share cancer stories, as they are usually moderated by trained volunteers or health care professionals.

Canadian Mesothelioma Survivor: ‘Advocate for Yourself’

Peritoneal mesothelioma survivor Jayda K. didn’t take her increasing pain lying down.

The Ottawa, Ontario, resident fought hard to get doctors to recognize her mysterious pain. Without her fighting spirit and determination to advocate for her health, she might not be here today.

“If I had given up when they first told me, ‘Oh, it’s just a little period pain,’ I might not be here today. You have to trust yourself and you have to trust your gut, no matter what people say to you,” Jayda told Asbestos.com.

Jayda was diagnosed with peritoneal mesothelioma at age 31 — decades before most usual diagnoses. Her diagnosis was confirmed a year and a half after her first symptoms arose. It began as a pain in her right side that was aggravated by bending over or leaning against things.

At the time, she was working in a kitchen and did a lot of bending over and leaning against sinks or tables. Eventually, the pain became constant, and she frequently ended up in the emergency room seeking an explanation. They found some fluid in her abdomen, but nothing seemed out of the ordinary.

“You have to advocate for yourself, and if you get turned down, just keep trying,” she said.

Struggle to Get Doctors to Take Her Pain Seriously

Jayda was referred to gynecologists at least six or seven times. Each time the gynecologists said they couldn’t find anything wrong.

“As a woman, especially as a young woman with abdominal pain being my major symptom, I had a really hard time convincing someone that I was in pain. Like, a really hard time. I was told it was just my period,” she said.

The incidence of mesothelioma in women is up 8 percent. Women now make up a quarter of mesothelioma cases. Historically, the disease has disproportionately affected men because men have tended to make up the vast majority of the workforce at risk of asbestos exposure.

In April 2014, after many months of emergency room visits, ultrasounds and imaging scans, Jayda convinced her doctors her pain wasn’t going away. They decided to do an exploratory laparoscopic surgery to determine where the fluid might be coming from.

That little amount of fluid turned out to be just a little more than a gallon of fluid.

During her laparoscopic procedure, the surgeon saw many small growths on her peritoneum and took biopsy samples that were sent off for pathology tests. All the biopsy samples came back inconclusive, but her doctors decided to do a more invasive surgery, called a laparotomy, to remove the growths on her peritoneum in November 2014.

During the laparotomy, her surgeon collected more biopsy samples and sent them to several experienced pathologists. All but one came back inconclusive, and it was the last sample that finally confirmed the mesothelioma diagnosis.

It took an expert pathologist who specialized in mesothelioma to identify the cancer. The pathologist said her case presented atypically, which explained why all the other biopsies turned out inconclusive.

Once they knew it was mesothelioma, they recommended cytoreductive surgery and heated intraperitoneal chemotherapy (HIPEC), which Jadya underwent in February 2015. The procedure was scheduled to take about 12 hours, but it lasted 18 hours because she needed blood transfusions. She spent a month in the hospital recovering.

Expert Care Covered by Canada’s Health Care System

Canada’s publicly funded health care system, informally known as Medicare, covered the costs of Jayda’s cancer care. All she has to pay is transportation to and from medical appointments.

Canada’s heath care system operates within each province, which meant Jayda had to travel five hours by car to Toronto for care instead of nearby Montreal, which is a two-hour drive from Ottawa. Her transportation costs quickly added up.

Then a social worker recommended Hope Air, a charity that arranges free flights for Canadians who must travel far from home to receive medical care. Hope Air not only provides flights with just a few days’ notice, but it also arranges for a travel companion to accompany patients when they aren’t feeling well enough to travel alone.

Now Jayda flies to Toronto for cancer care and doesn’t have to pay for her flights thanks to Hope Air.

In Toronto, Jayda received excellent cancer care at Princess Margaret Cancer Centre and her surgeries were conducted at Mount Sinai Hospital. She has friends in Toronto to stay with, which saves her the cost of lodging.

Likely Exposed to Asbestos as a Child

Jayda was most likely exposed to asbestos as a child through her father, who worked with asbestos products in the coal mining industry.

Her father worked at a mine that quarried coal for use in asbestos production. He worked in a lab at the coal mine where he used and tested asbestos products. He also did mechanical work that involved working with asbestos parts on the machinery at the coal mine.

This kind of asbestos exposure, when an asbestos worker unknowingly brings asbestos home on their clothing and work gear, is called secondary exposure.

Jayda has four siblings, and she’s concerned about their potential prior exposure and what future cancer risk they may be facing. Her brother was diagnosed with Crohn’s disease around the same time she was diagnosed with mesothelioma.

For a while, they had similar symptoms, and when she was diagnosed, they were worried he might have mesothelioma, too. It was later confirmed that he did not have mesothelioma and that his similar symptoms were caused only by Crohn’s disease.

Coping with Side Effects of Cancer Treatment

Jayda still has pain around the right side of her abdomen. Her doctors think its lingering nerve pain. She wonders if the pain is caused by a gallstone she developed more than a year ago.

Scans show two new growths in her abdomen, but doctors can’t tell if it’s cancer or scar tissue. They’re keeping an eye on it.

Every six weeks or so she ends up in the emergency room for pain or some other complication, and they usually do a scan to make sure no new cancer growth has developed. So far, so good.

She’s willing to have her gallbladder removed to see if that alleviates the constant pain she feels, but doctors say that kind of surgery is complicated to perform after cytoreductive surgery with HIPEC.

Jayda learned a lot about pain management from the Ottawa Hospital Pain Clinic. The waitlist to get into the pain clinic is usually around a year, but Jayda got in quickly by participating in a research study involving patients who often end up in emergency care for pain control.

“At the pain clinic, they give you a pain specialist, a nurse, a psychologist, a physiotherapist, an occupational therapist and a social worker. So you have all the support of people trying to figure out how to make your life easier,” Jayda explained.

Prior to working with the pain clinic, Jayda frequently went to the emergency room for intravenous (IV) hydration therapy. The folks at the pain clinic arranged for Jayda to get a permanent intravenous catheter, commonly called a port, portacath or PICC line, so she could easily receive IV hydration at home rather than going to the emergency room.

The pain clinic teaches patients that any kind of stress, whether emotional or physical, can increase the degree of pain a person feels in their body. Addressing pain management in a holistic way helps patients to reduce the amount of medicine they need to keep pain under control.

Jayda says that mindfulness techniques help her to control her pain by identifying what she’s feeling in the moment, and it helps her regulate her stress response. Yoga and other movement practices have helped her cope as well.

Social Support Through Young Adult Cancer Canada

Jayda found a supportive social community through Young Adult Cancer Canada (YACC), a nonprofit organization that unites young adults facing cancer.

YACC organizes retreats, an annual conference and local meetups throughout Canada. All of YACC’s events aim to connect young adult cancer patients with others who understand what they are going through.

“It’s nice to hang out with other young adults who get it,” says Jayda.

Jayda Kelsall at YACC

Peritoneal mesothelioma survivor Jayda K. met other young cancer survivors at the annual conference for Young Adult Cancer Canada.

She’s been to YACC retreats, their annual conference and local events. She recently joined a Christmas potluck, a karaoke night and a trip to one of Canada’s sugar shacks, where YACC members learned all about how maple syrup is made and enjoyed maple taffy.

“Most people at this age are building careers, building families and beginning their families and their lives, and when you have cancer, that gets put on hold,” said Jayda. “Just seeing that people are as frustrated as you are with similar situations, it’s really powerful. It’s a good connection.”

Learning to Trust Her Instincts

The symptoms that led to Jayda’s diagnosis taught her a lot about advocating for her own health.

“I can listen to myself and know myself and not be ashamed of that. That’s definitely helped me out a lot, just being confident and knowing when to advocate for myself, and how important that advocacy is,” she said.

Research shows women struggle more often than men to get their doctors to take their pain seriously. Dr. Jennifer Wider, a women’s health expert and spokesperson for the Society for Women’s Health Research told Vice News, “Studies show that doctors, regardless of gender, tend to undertreat female patients and take longer to administer medication to women.”

“My whole life I’ve been going to the doctor feeling like I probably shouldn’t be there, like I was probably just a wimp, and I think what this has taught me is that I’m not a wimp. I’m actually really strong,” Jayda said.

Jayda isn’t letting her pain or physical limitations stop her from traveling. She and her partner, Alex, are planning an upcoming vacation. She can’t go anywhere tropical because of the risk of stomach bugs, and she needs to travel somewhere where she can rent a pump to self-administer her IV fluids.

She hopes to visit her sister in New Zealand soon, and she’s working on ways to travel with her supplies to do IV hydration therapy.

“Being sick has made me much more confident in myself,” she said. “I’m much more self-aware and much more trusting of my own body.”

When asked what kind of advice she would offer to other people with mesothelioma, she stresses the importance of trusting yourself and advocating for your health.

“You are your own best advocate. You are your own expert,” she said. “You know your body better than anybody else does. And if something doesn’t feel right, scream it from the rooftops until somebody listens to you.”

Asbestos Exposure Summaries for VA Disability and DIC Claims

One of the key elements of a successful VA Disability Compensation claim or Dependency and Indemnity Compensation (DIC) claim for an asbestos-related illness is the asbestos exposure summary.

After a veteran is diagnosed with an asbestos-related disease and a doctor or other medical professional has provided a nexus letter, the next step is supplying exposure evidence.

It is essential to provide information about how the veteran was exposed to asbestos during their military service and describe potential civilian work exposure before and after active duty.

Asbestos-related diseases are different from many service-connected disabilities where an injury or event occurs while a person is enlisted and is documented on service medical records.

Because of the long latency period associated with mesothelioma and other asbestos-related illnesses — typically between 20 to 50 years — veterans are not diagnosed and do not have documented symptoms while on active duty.

As a result, veterans must provide evidence to the U.S. Department of Veterans Affairs (VA) to demonstrate they had more exposure to asbestos in the military than before or after service.

A well-written and researched exposure summary can be an important part of this evidence.

Summaries Include Where, When and How Exposure Occurred

In an exposure summary, a veteran supports a claim by providing information about where, when and how they were exposed to asbestos.

An asbestos exposure summary should include:

  • Information about their assigned duties
  • Specific asbestos-containing materials or equipment the veteran worked with directly
  • A description of airborne asbestos particles the veteran inhaled or ingested

Many veterans I have spoken with over the past three years assume the VA will know how they were exposed based on their service records or DD-214.

While the VA acknowledges some military occupational specialties have a higher risk of asbestos exposure — machinists, boiler technicians, mechanics, electricians and HVAC technicians — the veteran must provide evidence that demonstrates more exposure in service than in their civilian careers.

I encourage veterans to write summaries as if the VA rating officer has no knowledge of their job duties or asbestos-containing products.

This is especially important for veterans who worked outside their assigned military occupation specialty code or were exposed to asbestos in what is considered low-exposure jobs.

Exposed to Asbestos in the Military?

Our Veterans Department can help you or a loved one file asbestos-related VA claims.

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VA-Accredited Claims Agents Can Help

As a VA-accredited claims agent, I work with veterans to understand how they were exposed to asbestos during service and write summaries that can be submitted as part of their VA claims.

I’ve had the opportunity to work with hundreds of veterans and have helped write more than 100 exposure summaries.

Some of the asbestos-related VA claims I have assisted with include:

  • Restrictive lung diseases such as asbestosis
  • Mesothelioma
  • Lung cancer
  • Cancers of the bronchus, gastrointestinal tract, larynx, pharynx and urogenital system

VA-Accredited Claims Agents at The Mesothelioma Center can help gather evidence for VA claims and connect veterans diagnosed with asbestos-related diseases to specialty treatment centers in Boston and Los Angeles or civilian medical centers.

We can also assist veterans with additional financial resources, connect them with emotional support services and provide literature for learning more about their specific diagnosis. We are here to help the brave men and women who served our country.

Mesothelioma Treatment: Battle, Journey or Dance?

A mesothelioma diagnosis brings with it intense emotions and difficult clinical jargon.

While it’s vital for patients and doctors to discuss treatment strategies in the clearest terms possible, it’s only natural for cancer survivors to draw on more poetic language when reaching out for emotional support.

“Cancer patients use metaphors to help describe their cancer experience and increase others’ understanding of their life experiences,” licensed mental health counselor Dana Nolan told Asbestos.com.

Nolan runs The Mesothelioma Center’s monthly support group, and she has seen firsthand how survivors use familiar images and concepts to make sense of cancer treatment and explain their feelings to others.

Ever since the 1970s, when President Nixon declared the “War on Cancer,” military terms have provided many of the most common metaphors for cancer treatment. In recent years, however, many institutions have officially discouraged aggressive metaphors in favor of softer language that refers to cancer treatment as a journey.

“Some survivors and caregivers do connect with the ‘battle’ or ‘war’ metaphor, but others reject that description, as they don’t want to be at war with something within themselves,” Nolan said. “Some people talk about their cancer experiences as a rollercoaster, with lots of ups and downs, or as running a marathon.”

Cancer survivors adopt a variety of metaphors from all areas of life, and whether a metaphor is empowering or disempowering depends very much on the context in which it is used.

Battle Metaphors: Warfare vs. Weeding

Many medical metaphors are inspired by military terms. Patients undergoing treatment for mesothelioma are said to be “battling cancer,” and they may speak of cancer cells as an “enemy invasion” in their bodies.

“The battle metaphor helps some people feel stronger, like a warrior, which gives them hope,” Nolan explained. “But some people do not like that metaphor at all, as they don’t feel like a warrior — nor do they want to. So metaphors like that shouldn’t be universally prescribed to all cancer survivors.”

The overall “War on Cancer” metaphor is an effective device for bringing communities together and raising funds for research, because it positions cancer as a common enemy people can unite against.

However, this metaphor also casts mesothelioma patients as soldiers in a war they did not sign up for. It can imply that if they lose their “cancer battle,” it may be because they did not “fight hard enough.”

This is a profoundly unfair judgement in light of how resistant mesothelioma is to conventional treatment.

Many cancer survivors find less morbid ways to talk about their conflict with cancer. Drawing from everyday life, one can think of eliminating cancer cells as a tiring but necessary task like weeding a garden or de-icing a sidewalk.

Rather than a violent battle, some patients think of treatment as playing a game of chess against the cancer, which requires strategy, patience and a level head.

Journey Metaphors: Rollercoaster vs. Marathon

The journey metaphor for cancer treatment became popular because it fits into the broad philosophy of “life as a journey.”

By framing cancer treatment this way, patients are less likely to feel anxious about living up to the expectations of people who want them to “beat the cancer,” and they are less likely to feel guilt or shame if their bodies do not respond well to treatment.

The journey metaphor also makes it clear cancer treatment is a long and uncertain process, not a war that can be won in a single decisive battle.

However, journey metaphors are not necessarily more empowering or comforting than battle metaphors, as a recent study of communication in an online cancer survivors’ forum revealed.

Mesothelioma patients may feel as though they’ve been forced onto an arduous path filled with obstacles, or they may feel like unwilling passengers with no control over their destination.

The metaphor of a rollercoaster ride aptly conveys how patients can be taken from high hopes to depths of depression and back again with each new scan and test result.

One type of journey metaphor that gives patients more authority is marathon running. A marathon is long and difficult, but it is also a testament to the runner’s determination and love for life.

Other Metaphors: From Survivor to Thriver

Much of the public debate around the language of cancer treatment focuses on contrasting battle metaphors and journey metaphors, but ultimately each mesothelioma patient has the freedom to use whatever words bring them the greatest peace of mind.

Patients who face multiple relapses and remissions may think of treatment as a dance, in which sometimes they lead and sometimes their cancer leads.

Recognizing cancer begins in their own bodies, some patients think of treatment as re-establishing a musical harmony by getting all their cells to sing in tune again.

Many patients find strength in humor by personifying their cancer with a silly nickname or even thinking of it as a troublesome roommate they must adjust to. This is fitting because there is currently no cure for mesothelioma, which means no matter how long medical technology can extend survival, patients will likely have to live with some level of cancer care for the rest of their lives.

Indeed, this is the reality for most forms of cancer and many types of chronic diseases.

For this reason, many patients choose to emphasize how they can continue living their lives after their diagnosis — going beyond surviving to thriving. What this means is for each individual to decide, and there are as many perspectives on survivorship as there are mesothelioma survivors.

“I don’t think there is a ‘better’ or healthier way to describe cancer,” Nolan confirmed. “I don’t recommend a particular metaphor or suggest how someone should experience or communicate their feelings or perspective about cancer. Mesothelioma is a very individual experience, and I believe the usefulness of metaphors is to further understanding of the cancer experience between the cancer survivor and those who care about them.”

Does Cancer Treatment Alter Your Sense of Taste?

For many families, a loved one’s cancer becomes more real when physical symptoms appear.

Patients may lose their appetites and rarely feel hungry. Others struggle with oral lesions that make eating painful and undesirable.

Collectively, these eating problems lead to weight loss.

It is essential for patients and caregivers to discuss eating issues with their oncology team.

Because eating difficulties aren’t a life-threatening side effect of cancer, people may overlook the impact of such issues on physical and mental well-being.

Understanding cancer-related eating problems and how to best combat them are good ways to stay healthy.

Cancer-Related Factors That Can Affect Taste

Malnutrition and weight loss are arguably the most visible side effects associated with cancer.

We cannot see malignant cells and tumors growing inside the body of our loved one, but we most certainly can see the drastic body changes many cancer patients endure.

A 2017 study published in Frontiers in Physiology shows how eating problems may relate to a loss of taste perception. Many patients and caregivers might not realize cancer-related factors affect taste perceptions.

Some of the elements that may affect a cancer patient’s sense of taste include:

  • Medications
  • Oral lesions
  • Chemotherapy
  • Radiation

Biological Underpinnings of Taste

In the study, authors from Weill Cornell Medical College and the University of New York explain how inflammation related to advanced cancer may affect a patient’s taste buds, appetite and eating capabilities.

We have 5,000 taste buds that help detect food preferences, prepare the body for digestion and use ingested nutrients. The authors explain how treatments such as chemotherapy, radiation therapy and cancer-fighting drugs may affect the biological mechanisms of taste.

Many cancer patients report gastrointestinal disruptions such as dry mouth, loss of appetite and loss of taste perception as the most distressing symptoms they experience.

Addressing these issues may lead to a higher quality of life for those affected by cancer.

Advanced Cancer and Treatments May Influence Taste Perception

It would seem some of the treatments necessary to combat cancer adversely affect a patient’s eating abilities while attacking cancer cells. One study suggests nearly 70 percent of research participants experienced taste issues during their cancer treatment.

Some of the treatments discussed in the study that can alter a patient’s perception of taste include:

  • Chemotherapy: Some patients undergoing chemotherapy treatments experience subsequent mouth complications called oral mucositis. This side effect of chemotherapy is an inflammation of the mucus membrane that leads to the development of raw sores in the mouth. Inhibited taste perception can be related to oral mucositis.
  • Radiation Therapy: While radiation therapy targets and destroys cancer cells, it may also destroy taste cells. People with head and neck cancer are more likely to experience radiation-related taste issues, but this phenomenon occurs in patients with other forms of cancer as well.
  • Zinc Depletion: Some cancer patients undergoing chemotherapy and radiation treatments experience depletions in their levels of zinc. This trace element is essential for taste perception and other immune system functions. Lower levels of zinc may inhibit one’s ability to taste foods.

According to the study, loss of taste perception is a temporary side effect and usually subsides within a few weeks or months of completing cancer treatment. Additionally, there are several ways in which patients can combat dietary issues that stem from loss of taste perception.

Ways to Fight Loss of Taste

The researchers from Weill Cornell Medical College and the University of New York assert that patients who understand the potential effects on their taste perception prior to treatment cope better with the changes.

Talking to your oncology team about potential taste issues is a good place to start.

Some other suggestions in the study include:

  • New Recipes: Patients struggling with loss of taste might be enticed by new and exciting foods that they’ve never tried before.
  • Add Some Gravy: Pouring a tasty sauce or gravy over vegetables or meats is a way to add some extra flavor to a meal.
  • Sweeten Things Up: Glazing meats like ham or chicken might help to liven up taste buds, creating a more palatable experience.
  • Taste Test Before Treatment: It may be helpful to try out a few supplemental drinks and foods before starting cancer treatments to find the right one.

My Father’s Struggle with Eating

Dad’s weight loss began even before doctors diagnosed him with mesothelioma.

Significant physical changes ensued shortly after he started chemotherapy and radiation treatments. We quickly learned how cancer treatments impacted his oral health and eating habits.

At first, Dad said his food just “didn’t taste right.”

Soon, painful mouth sores developed inside his mouth, and Dad could only eat soft solids.

During this time, my creative and resourceful father created a “jelly diet.” Jellies and jams were the only foods that tasted good to Dad and were soft enough for him to eat.

These gelatin-based foods work reasonably well at providing calories and satisfying a sweet tooth, but a diet consisting of only jams and jellies won’t fuel the nutritional needs of someone with advanced cancer.

Luckily, Dad’s oral complications and taste issues subsided a few weeks after he stopped treatments.

Opening conversations with your oncology team about eating-related side effects of cancer treatment may the first line of defense.

Working together can decrease the impact these issues have on a patient’s quality of life.

Do Side Effects Indicate a Cancer Drug Is Working?

Chemotherapy often carries the perception that the treatment is worse than the disease.

The approach earned this reputation decades ago, but today it does not represent the reality of mesothelioma treatment for most patients.

Cancer drugs do cause uncomfortable and sometimes dangerous side effects. However, the expectation of severe side effects can sometimes lead patients to feel anxious, confused and even frustrated if it turns out their treatment regimen isn’t so bad.

In cancer treatment, the idea of “no pain, no gain” is a myth. A positive response to treatment depends in large part on minimizing and managing side effects. Prescription medication can control some side effects, and the new generation of cancer drugs causes fewer side effects to begin with.

Side Effects Do Not Indicate Treatment Effectiveness

Dr. Raja Mudad, medical director of the chemotherapy treatment unit at the Sylvester Comprehensive Cancer Center in Miami, has experience treating mesothelioma with chemotherapy and immunotherapy.

“Most patients have heard about side effects from reading on the internet or via other patients,” Mudad told Asbestos.com.

When patients do this sort of informal research, they may come to expect side effects such as complete hair loss, crippling nausea and debilitating fatigue during treatment.

“Most patients are usually apprehensive about taking chemotherapy because of this misconception,” Mudad said.

Some patients even assume if they don’t experience side effects, the treatment is not working. Mudad debunked this myth.

“There is absolutely no relationship between effectiveness and side effects,” he said. “A patient may respond without side effects or not respond and have side effects. To measure the effectiveness of a cancer drug, we usually perform scans after two to four treatments to assess shrinkage in the tumor.”

Difference Between Symptoms, Side Effects and Response

Cancer and chemotherapy can both cause fatigue, digestive problems and low blood cell counts, so it’s easy to confuse mesothelioma symptoms and drug side effects.

To better understand what a patient may experience during cancer treatment, it’s important to know the difference between symptoms, side effects and response:

  • Symptoms are adverse effects caused by tumors pressing against or invading organs and tissues in the body. As cancer develops, it can also cause painful fluid buildup as well as weight loss and fatigue when cancer cells use up the body’s energy supply.
  • Side effects are adverse effects caused when drugs damage healthy cells in addition to cancer cells. Chemotherapy drugs usually affect all rapidly reproducing cells in the body, especially cells in the stomach, intestines, bloodstream and hair follicles.
  • Response is how doctors describe a drug regimen’s effect on cancer. A “complete response” means the cancer has disappeared, while a “partial response” means the tumors have shrunk. “Stable disease” signifies no effect, and “disease progression” means tumors are still growing despite the treatment.

Doctors Can Help Patients Manage Side Effects

A positive response does not depend on a patient enduring harsh side effects. In fact, side effects are precisely what limit the effectiveness of cancer treatments in many cases.

For example, nausea and vomiting are two of the most common side effects of chemotherapy. In addition to reducing quality of life, these side effects can prevent patients from getting the nutrition their bodies need in order to heal.

“Nowadays, we have better drugs to prevent side effects, and most patients do not experience many side effects from chemotherapy,” Mudad explained.

To help patients manage nausea, doctors often prescribe a medication such as palonesetron (Aloxi), aprepitant (Emend) or ondansetron (Zofran).

Emerging Cancer Treatments Are Less Toxic

Chemotherapy can also cause rare, life-threatening side effects depending on a patient’s blood chemistry and overall health.

Even if a treatment is proven to kill cancer cells, if it comes with an unacceptably high risk for an individual patient, doctors may have to reduce the dosage so much the treatment is no longer effective.

For this reason, researchers are constantly searching for ways to reduce the toxicity of cancer treatment. Doctors can administer less-toxic drugs in higher doses, which increases the likelihood of a partial or complete response.

Mudad reported positive developments in mesothelioma treatment.

“The availability of newer drugs like Avastin and immunotherapy treatments has added new options for patients, and these drugs are much less toxic than chemotherapy.”

Avastin is a brand name for bevacizumab, which the National Comprehensive Cancer Network (NCCN) added to its recommended treatment regimen for mesothelioma in 2016.

Researchers continue to study immunotherapy drugs such as pembrolizumab (Keytruda), nivolumab (Opdivo) and ipilimumab (Yervoy) in mesothelioma clinical trials.

Finding Your Faith in the Midst of Mesothelioma

I am often reminded of a popular saying: “It’s easier said than done.”

So many people like to use this saying when they are faced with a problem or other hardships. I was diagnosed with peritoneal mesothelioma at the age of 21. Just for context, most people are diagnosed at age 70 or older.

I remember bits and pieces of the day I found out, but there is one thing I remember the most. The doctor who treated me stood at the foot of my bed after my surgery and said, “Well, Ms. Cox, your surgery went well, but you have cancer. Mesothelioma to be exact. I’m sorry.” Then he left the room.

I am sure anyone who has ever been diagnosed with cancer has had different responses to the devastating news. For me, it took some time to comprehend it.

Let me remind you that I was in the recovery room because I had just exited my surgery. After he announced my diagnosis, I looked at the faces of my family members standing around my bed. I saw the fear and sadness on their faces as they stared at me to see my response. All I could think about was my five-month-old Caleb, and how I wanted to go home and see my baby.

Relying on Faith

Although it may take some time, it hits you out of nowhere. And that’s when I had my breakdown.

I let out the loudest scream ever. It was an outpour of my emotions: Thinking about the things that led up to that point, my husband Samuel (boyfriend at the time) and Caleb. It felt like everything came to the forefront and flashed before my eyes.

After the diagnosis comes the outpour of people reaching out and wanting to help. In a sense, you feel as if they are sorry for you, and that’s the only reason they are reaching out. But at the time, I wanted to be with my little family — Samuel, Caleb and me.

I needed time to digest things and get my mind prepared for the next steps. Samuel encouraged me the entire time. He would let me know I would get through this and reminded me daily of my faith.

Just in case you’re not familiar with the word “faith,” it means believing in something even if you don’t see it. I grasped on to my faith and didn’t let go.

Tamron-Cox Little

Peritoneal mesothelioma survivor Tamron-Cox Little.

Key to Faith Is Believing

As the days passed, my faith strengthened. I believed I would heal, be made whole again and that God would carry me through this with victory. That is the power of faith.

When you are hit with a cancer diagnosis or anything that causes tribulation, it’s easy to give in. It’s easy to get wrapped up in your emotions and question why this is happening to you.

Having faith determines your attitude as well. I remember my family asking me all the time if I was OK because of my positive attitude throughout the process. What they didn’t know was the peace I felt having found my faith.

It may be easier said than done, but you’ve got to find your faith and believe you will come through. Your life depends on it.

Tamron Cox-Little was diagnosed with peritoneal mesothelioma when she was 21 years old. Now, the 10-year survivor is sharing her stories and experiences to support people recently diagnosed with the rare, asbestos-related cancer.

Getting from a Local VA Clinic to a Top Mesothelioma Specialist

Mesothelioma is one of the toughest forms of cancer to treat, so it should come as no surprise your local VA clinic is probably not up to the task.

But you might not realize the national VA health care system can provide access to some of the best mesothelioma specialists in the country.

Once you appreciate how important it is to receive mesothelioma treatment from a medical center with the right tools and expertise, the question becomes: “How do I get from here to there?”

When it comes to crafting a treatment plan for asbestos-related cancer, there’s a sharp difference between the generalized approach of most doctors and the expert opinion of a specialist.

A few prominent mesothelioma specialists work within the VA system, providing cutting-edge treatment to veterans. The VA can arrange for veterans to travel to these specialists at no extra cost or cover the expenses of seeing a mesothelioma specialist at a private institution.

Rare Cancer Requires Highly Specialized Care

Mesothelioma is rare compared to other forms of cancer, so very few doctors — within or outside the VA system — have the training and experience required to effectively treat this disease.

A 2017 study published in the Journal of Surgical Research describes the experiences of 38 veterans diagnosed with pleural mesothelioma who obtained a second opinion at the VA Boston Healthcare System. The VA system in Boston shares staff and facilities with the International Mesothelioma Program at Brigham and Women’s Hospital.

The majority of the patients had been initially prescribed only chemotherapy or symptom management by their local doctors, and many of them were told they had only months to live.

When mesothelioma specialists in Boston evaluated the 38 cases, however, they found three quarters of the patients were eligible for multimodal therapy. This approach combines tumor-removing surgery with chemotherapy and other cancer treatments, and it provides the best hope of helping mesothelioma patients live longer.

Additionally, the Boston specialists discovered four of the veterans were misdiagnosed and actually had a benign pleural disease or a form of lung cancer, which requires a different treatment strategy.

Mesothelioma Specialists Within the VA System

As the Boston VA study illustrates, many mesothelioma patients have to travel across multiple state lines to see a doctor familiar with their disease.

The good news for veterans is while they may have to go out of state, they don’t necessarily have to go out of network.

Certain VA treatment centers have the resources to serve patients with mesothelioma as part of the standard health care benefits for veterans.

Bruce W. Carter VA Medical Center

This hospital near Miami, Florida, provides a comprehensive array of health care services, and mesothelioma patients who travel there can benefit from the surgical expertise of Dr. Dao Nguyen. In addition to his work at the VA, Nguyen is affiliated with the Sylvester Comprehensive Cancer Center, one of the nation’s leading institutions for mesothelioma treatment and research.

West Los Angeles VA Medical Center

Part of the largest VA health care system in the U.S., this hospital rivals many of the nation’s top private institutions in terms of excellence in mesothelioma treatment. The hospital’s leadership includes Dr. Robert Cameron, who is also the director of UCLA’s Comprehensive Mesothelioma Program and senior medical adviser for the Pacific Mesothelioma Center.

VA Boston Healthcare System

In addition to the International Mesothelioma Program, this health care system’s partners include Harvard Medical School and the Boston University School of Medicine. Dr. Abraham Lebenthal — a respected thoracic surgeon and former military man himself — has a special interest in making sure veterans with mesothelioma have access to world-class treatment in Boston.

How to Afford Traveling for Treatment

At this point you may be thinking: “It’s great these medical centers are out there, but how am I supposed to afford getting treatment a thousand miles from where I live?”

Fortunately, there’s a system in place to answer this question. When veterans cannot get the treatment they need locally, their medical center can arrange for them to travel anywhere in the VA health care system at no extra cost to the veteran.

In many cases, caregivers and family members of veterans can also find free lodging near a major treatment center. For example, military families traveling to the VA Boston Healthcare System can take up temporary residence at the Fisher House or the Huntington House.

The Boston VA also has a telephone triage system designed to expedite second opinions and travel arrangements for veterans with mesothelioma, no matter where in the country they live.

How to Afford Private Treatment Closer to Home

Veterans who prefer to seek treatment outside the VA system have a financial resource available to them in the Veterans Choice Program. In cases where veterans cannot easily seek treatment for a service-connected disability within the VA network, the funding available in the Choice Program can pay for treatment at a private facility.

The VA recognizes mesothelioma caused by military asbestos exposure as a service-connected disability, but the process of getting all the paperwork approved can be long and complex.

Rather than wasting precious time waiting for approval to begin cancer treatment, veterans also have the option to start treatment first, file an asbestos VA claim and then have their service-connected medical expenses reimbursed.

Mesothelioma Survivor Believes Trial Drug Saved His Life

Mesothelioma survivor David Broyles once worried about living long enough to see the birth of his daughter.

Now, almost 22 years later, he will see her graduate from college.

He has beaten the odds.

“Miracles happen,” Broyles told Asbestos.com. “They happen every day in this world, small miracles and large miracles. I’m evidence. I can’t change the facts.”

Six Months to Live

Broyles, 55, was devastated by his diagnosis of peritoneal mesothelioma more than two decades ago. He was young, strong and invincible — or so he thought.

He was a top-ranked mountain bike racer who owned his own construction company in Austin, Texas. Broyles thought his surgery for a hernia would be little more than a minor distraction back in 1996.

It became a blessing — and a curse.

He couldn’t believe what the surgeon told him afterward, when more tests were ordered and the rare diagnosis was eventually delivered.

“The surgeon didn’t have the best bedside manner, but he told me ‘you got six months to live. Get your stuff in order,’” Broyles recalled. “My wife and I went to the library and did our homework to learn more about the cancer, and it was horrible. I was devastated. I almost passed out. We were crying for days at home.”

Pregnancy a Welcomed Distraction

A few weeks later — shortly after starting his chemotherapy — his wife told him she was pregnant again.

Broyles’ son, Tyler, was four.

Although treatment for peritoneal mesothelioma has advanced considerably, there was very little hope offered for a patient 20 years ago.

“The pregnancy was a good distraction for us. It made me want to fight this battle even harder than I would have,” Broyles said. “I had this will to live, and just said, ‘I’m not going to accept this diagnosis. I want to see my children grow up. I want to see them graduate. I want to live to be 55.’”

Broyles underwent major cytoreductive surgery, considered risky and far from perfected back in the 1990s. The tedious, seven-hour surgery cleaned out tumors throughout his abdominal cavity.

Whatever It Takes

Broyles jumped directly into a clinical trial involving a combination of chemotherapy and the experimental drug ranpirnase (Onconase), which is created from an enzyme found in the Northern Leopard frog.

The drug supposedly worked by speeding up the body’s ability to destroy or stop cancer cells from dividing.

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After each chemotherapy session, Broyles would train on his mountain bike, regardless of how bad he felt or what his oncologist suggested. He pushed himself to the limit, even winning races in the midst of a chemotherapy cycle.

“I just felt the best way to deal with cancer was to punish it. I wanted to make it as uncomfortable as possible for the cancer, because it sure made me uncomfortable,” he said. “It helped me to hurt. I was just obsessed with riding after chemo.”

Broyles responded so well to the clinical trial that the company making the drug started sponsoring his competitive mountain biking, promoting him as a spokesperson.

“They called me the wonder child. They had never had a patient so young and otherwise so healthy,” he said. “My situation was unheard of back then. It defied all logic. I guess you could say I was an anomaly.”

Although the trial was later discontinued for lack of overall efficacy, Broyles believes firmly the drug saved his life. He’s thankful to be one of the lucky ones who responded so well to it.

He also feasted on alternative medicines and supplements, including shark cartilage, various minerals and high doses of vitamins — often 30 pills each day.

“My oncologist, he was out there, very unconventional,” Broyles said. “He was all for that stuff.”

Second Major Surgery Followed

For two years, regular CT scans showed no cancer recurrence, although it returned on a smaller scale in 1998, prompting a second cytoreduction.

“I told them they should have put a zipper on my belly, like one of those zip lock baggies. It would have made it easier the second time,” he said. “But I went through it again, and they got it all out that time.”

Broyles has experienced no recurrence since. His scans are done only every five years now.

“My brother told me, ‘you got the best, worst luck I’ve ever seen,’” he said. “My mother said the hernia was God’s way of getting an early detection.”

‘Lucky in a Lot of Ways’

Without the hernia surgery, Broyles is unlikely to have discovered the cancer until it had spread more extensively, making it more difficult to control.

Less than a third of mesothelioma patients even qualify for surgery because it typically is detected so late.

“I was lucky in a lot of ways. At times I feel guilty because I understand so many others die from this. It’s weird, I want to live but sometimes feel guilty about still being alive,” he said. “My surgeon has retired, and so has my oncologist. I’ve outlived some of the medical people who treated me.”

Broyles still runs his construction company in Austin. Away from work, he hunts, fishes and enjoys the great outdoors every chance he gets.

And even at 55, he still rides the local bike trails.

“I don’t think once you’ve had cancer, it ever really leaves you mentally, even after all these years,” Broyles said. “I know it has given me a sense of awareness that I never had before. I can appreciate things a lot more. And hopefully, I can help others along the way.”