Finding Moments of Joy as a Mesothelioma Caregiver

When a loved one is diagnosed with a debilitating illness such as mesothelioma, everyday life can become full of challenges for those who care for them.

In addition to taking on the role of caregiver, you may have to take more responsibility for decision making, financial management, household chores and caring for children and pets.

Then there is the emotional turmoil that comes with the new reality: Feelings of isolation, sadness, anger, helplessness and fear. With all this going on, it is easy to believe that joy can no longer be found in life.

But no matter how challenging life may become, moments of joy are possible, and you can find them in something most of us take for granted — nature.

Tapping into Nature

Nature is all around us, but we often don’t stop to appreciate or acknowledge the vital role it plays in our physical and emotional well-being.

You do not have to travel to the Amazon rainforest to experience the wonder of nature. It can be found right in your own backyard.

When we tune in to nature, our senses of sight, hearing, smell and touch are awakened and we are open to experience pure joy.

Caregiving for a loved one with mesothelioma is never easy, but experiencing moments of joy, no matter how fleeting, can provide some valuable time away from emotional stress and help renew the energy you need to continue your vital role.

Here are five things you can do to find your moments of joy.

Use a Tree as a Meditation Focus Point

Make your way out into the backyard and find a quiet, secluded place where you can focus on nothing other than a tree in your line of sight.

Shut all thoughts from your mind as you concentrate on the smaller branches of the tree. Watch how they move as the wind blows, and listen to the rustling of the leaves.

If you are fortunate to have birds visiting, watch them as they sit on the tree. Appreciate how beautiful and unique they are and listen to their calls. Stay as long as you like, enjoying this wonderful connection with nature.

Collect Fallen Leaves

Take a walk to the park or into your own backyard. Focus on leaves on the grass. Scoop up a handful of them and note the following:

  • Color: Are they predominately green or a combination of green, red, yellow and brown?
  • Shape: Which trees did they come from?
  • Feel: Are they smooth or rough? Are there any seeds on the back of them?
  • Smell: Are they sweet-smelling or earthy?

As you answer these questions, you will feel closer to nature and be able to put worrying thoughts aside.

Take some leaves home and put them in a glass jar. Every time you look at them, they will provide a pleasant memory of the joy you felt that day.

Visit the Ocean

Go for a walk along the beach. Feel the sand under your feet and notice how the sand sifts between your toes. Walk down to the water’s edge and feel the cool wash of the waves on your feet.

Close your eyes and feel the cool ocean spray on your face — take deep breaths and fill your lungs with clean, healthy air. Find a place on the sand where you can stay dry and gaze at the vision before you.

Concentrate on the waves crashing to shore. Enjoy their rhythm as they roll up the sand and then back to the sea. Notice the foam left behind as it glistens in the sun.

Walk along the shore to a group of shells. Take a handful into your hand. Notice how varied they are. What shape are they? What color are they? Where did they come from?

Take a few shells home and display them as a pleasant reminder of the joy you experienced at the beach.

Observe Life in a Garden

Take a walk out to a garden. Sit on a comfortable chair and spend some time really looking at the abundance of nature there. If you look closely, you will see life in many forms.

On the ground there will be trails of ants carrying out their business, snails hiding in their shells, the remnants of dead flowers, splashes of color against the mulch.

Next, focus on the flowers and how many varieties there are. Note how perfectly each flower is formed and how many buds are about to open. Take a close look at the leaves and how symmetrical they are.

Close your eyes, take a deep breath through your nose and enjoy the wonderful scent of the flowers. It is the best perfume you will ever find.

Rise and Relax with the Sun

Set your alarm clock to wake up early one morning so you can experience the sunrise. As you watch the beautiful colors come into the sky, close your eyes and listen to the sounds of nature waking up around you.

At the end of day, stop whatever you are doing and make your way outside to watch the sunset. As you look up to the sky, take some slow, deep breaths. Notice how this relaxes your body and your mind.

Then focus on the sunset. See how the colors build and then fade. Watch closely as the sun disappears and darkness descends.

Your appreciation of the beauty you have witnessed will remain long after the sun has set.

How Asbestos Changed My Life

Asbestos is the stuff of nightmares, and I should know. It killed my husband, Brian.

Diagnosed with mesothelioma at age 52, he became one of hundreds condemned to death because of time spent in the asbestos mining town of Wittenoom, Western Australia.

The fact that he, his sister and their parents spent only a few short months in the town before relocating to Port Headland, Western Australia, made no difference.

Brian had 45 years of good health before the cancer struck. There was no way of stopping it.

As I struggled to come to terms with his terminal illness, I found it hard to believe asbestos was the cause. For most of my life, I’ve lived, worked and played in buildings predominantly built with asbestos without a care.

No one ever told me it was something to fear.

The shock of Brian’s diagnosis made me realize how little I knew about asbestos.

Suddenly, I needed to know what it is, where it came from and, most importantly, why it is so deadly?

My quest to find answers revealed some frightening facts about asbestos, the menace that still poses a threat around the world today.

Asbestos in Australia

Asbestos is a name given to a group of silicate minerals that occur naturally on every continent.

Consisting of magnesium, calcium and iron, types of asbestos include: Chrysotile, amosite, crocidolite, tremolite, anthophyllite and actinolite.

Australia has a long legacy with asbestos. Mining in Western Australia began in the 1930s.

Situated at the mouth of the Wittenoom Gorge, the Wittenoom mine was responsible for shipping more than 150,000 tons of crocidolite (blue asbestos) from 1943 to 1966. Blue asbestos is now known to be the deadliest of all types of asbestos.

According to experts, Australia had the world’s highest per capita use of asbestos from the 1950s to the 1980s.

Hailed as a miracle product at that time because of its remarkably high tensile strength and heat resistance, it was used extensively by the building industry in the production of a wide range of building products.

As a result, any home, school, hospital or business built during this time is likely to contain asbestos products.

Asbestos is commonly found in:

  • Cement (fibro asbestos sheeting)
  • Lagging on water pipes
  • Roofing materials
  • Floor underlays
  • Insulation
  • Piping for water supply and sewage
  • Electrical wire casings
  • Paints, coatings and sealants

It is estimated as much as two-thirds of asbestos products manufactured and installed between the 1940s and 1960s are reaching the end of their lifespan.

This is particularly concerning when it comes to fibro asbestos sheeting in hundreds of older buildings, backyard sheds and fences across Australia.

Weakened by time and the elements, the sheets can easily become friable, meaning the cement within them breaks down and is easily crumbled. Once this occurs, microscopic asbestos fibers are released into the air.

Carried by the wind, inhaling or ingesting these fibers can lead to asbestos-related diseases such as mesothelioma.

Take Precautions to Prevent Asbestos Exposure

Mesothelioma — a word I didn’t know for most of my life — is now forever on my mind.

I will never forget the pain and suffering this devasting disease caused Brian or his brave attempt to survive it. During his two years of survival, mesothelioma robbed him of everything he once enjoyed in life.

It has been almost 17 years since I became a widow. Time has eased the pain of my loss, but I still feel anger whenever I hear the word asbestos.

For me, there has been no justice for Brian’s suffering and unnecessary death. His killer is still out there, it is not going away, and its next victim could be me — or you.

This reality shows how vital it is to be aware of asbestos and take the following steps to protect ourselves and others from harm.

  • Be Aware: Make it your business to find out where asbestos may be lurking in your home and the buildings that surround you. If you are unsure about whether your home contains asbestos, call the experts.
  • Check Before You Act: Do not attempt to destroy or remove any product containing asbestos yourself. Contact an authorized asbestos abatement company to do the job safely.
  • Be Responsible: Do not attempt renovations of any kind in a home built before the 1980s. It is highly likely that it will contain several asbestos products, some of which may be in places you may not expect.
  • Be Proactive: Share your knowledge about asbestos with everyone you know. Your future health could depend on them and their actions regarding the deadly mineral.

Nurse and Mesothelioma Patient Advocate

May is Oncology Nursing Month, celebrating a profession that serves an integral part in cancer care.

Oncology nurses are essential to a patient’s cancer journey. They are there to explain a diagnosis, guide a patient through treatment, celebrate victories and offer comfort and support through the unimaginable.

The field of oncology nursing is one of the most challenging and rewarding fields in nursing. These nurses often work behind the scenes, communicating with doctors and coordinating care.

For patients battling a rare and aggressive cancer such as mesothelioma, oncology nurses play an important role in a survivorship care plan. They keep track of medical records and test results, safely administer treatments such as chemotherapy, and help patients understand complex medical terminology.

Karen Selby is a registered nurse and patient and family advocate at The Mesothelioma Center. Her extensive background includes working for a surgical oncology program at the University of Maryland Medical Center, where she assisted surgeons with lung resections, lung transplants, pneumonectomies, pleurectomies and other procedures.

As a patient advocate at The Mesothelioma Center, Selby uses that experience when working with mesothelioma patients and caregivers. For nearly 10 years, she has helped patients navigate the complicated health care system and connected them with the resources they need during their cancer battle.

Interview with Karen Selby

Q: What is your background with oncology nursing and patient advocacy?

Selby: It’s almost impossible to be a nurse and not deal with oncology in some aspect. My oncology experience started in the early 90s as an operating room first assistant nurse for a very progressive surgical oncology program at the University of Maryland.

This experience allowed me to gain knowledge in the surgical procedures associated with diagnosing and treating mesothelioma. I am a natural nurturer and enjoyed the patient care aspect of nursing. So, when The Mesothelioma Center reached out to me in 2009 to see if I had an interest in joining their advocacy program, I was very excited.

Q: When did you first get involved with helping mesothelioma patients? What drew you to this specialty?

Selby: Well, I first got involved in perioperative nursing in the early 90s. I was quickly drawn to surgery just after nursing school. After several years in the operating room, I found myself specializing in vascular and oncologic specialties.

I joined The Mesothelioma Center as a Patient Advocate in 2009 and was immediately excited to assist patients and caregivers with this rare cancer. My experience allowed me to know firsthand the importance of choosing the right specialist in order to receive best treatment options.

Sometimes this isn’t easy to understand, so sharing my experience with patients allows me to help them be the most educated and informed when making the choices that are right for them.

Q: How does your background prepare you for supporting mesothelioma patients and caregivers?

Selby: Because my background is multifaceted, being a true advocate for a new patient or caregiver comes easy. I am naturally drawn to someone in need and want to walk with them on their journey to help make their life a little easier.

That may mean explaining the process that they will be experiencing during a future procedure, helping them research and choose a clinical trial, assisting with scheduling an appointment to see a specialist, or bringing like patients together in our unique support group.

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Connect with Karen Selby and those affected by mesothelioma in our monthly support group.

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Q: What should patients expect when they first connect with you?

Selby: I ask lots of questions. I want to know as much as I can about their unique story. Everyone is different, so knowing as much as I can helps tailor the services we can offer here at The Mesothelioma Center.

Q: What makes The Mesothelioma Center different?

Selby: Our advocacy center is very unique in that we have very high-level, experienced advocates on staff, with each having unique skill sets: Medical, VA-Accredited Claims Agents, a certified dietitian and a licensed mental health counselor, to name a few.

We truly are an advocacy center, and our desire is to always have the patient or caregiver’s best interest at heart. We have no secret agenda.

Q: Why should mesothelioma patients connect with a patient advocate with oncology nursing experience?

Selby: With mesothelioma being very searchable, patients and caregivers can search terms on the internet and find themselves visiting a variety of websites that will label themselves as advocacy groups.

Many of these groups may not have any oncology experience and know very little about this unique cancer.

Connecting with an experienced oncologic nurse will allow the patient to get individualized information based on their unique situation rather than very broad and generalized information.

Q: How do you make a difference in the lives of the patients you help?

Selby: I feel that I try to help them at their level. I listen to their needs, then help them prioritize and problem solve. I have been here for almost 10 years and don’t plan on going anywhere as long as I’m needed.

I love it when I have a survivor call me several years after a diagnosis and say, ‘Wow, I can’t believe you remember me!’

Nutrition for Your Loved One After Mesothelioma Treatment

Mesothelioma and its treatment may cause a variety of side effects. These symptoms can diminish ability to eat well and lead to unintentional weight loss.

If you’re caring for a loved one with mesothelioma, you can help that person meet their nutrition needs and avoid losing weight without trying.

This is important because proper nutrition is a critical component of mesothelioma treatment. The right nutrients are the fuel your loved one needs to heal, maintain immunity and rebuild their body during and after treatment.

Beyond preparing food, removing stress from meal times, keeping realistic expectations, remaining flexible and supporting eating efforts can do wonders for your loved one’s ability to eat.

Understand the Challenges

One of the most challenging things about cancer is the additional stress it can place on a relationship or family. Every family has challenges, and we all get irritated with our spouse from time to time.

Mesothelioma cancer can magnify small day-to-day annoyances and bring them to a boiling point. Even things as seemingly normal as having a meal together can feel like a battleground after a cancer diagnosis.

Following mesothelioma treatment, eating can be a huge challenge. Food can taste horrible, or have a metallic flavor or texture like cardboard. Appetite can be nonexistent, and nausea comes and goes.

Words alone often aren’t adequate to describe these challenges to a family member who is not experiencing them directly.

Lending a Hand with Love, Not Judgment

For the family member, it’s easy to think, “Why aren’t they trying harder? If they’d just make more of an effort to eat what I’ve made, this would be so much easier.”

But this can come across as unneeded stress and feeling “nagged.”

This dynamic is the last thing a person struggling to eat needs. Stress can lessen appetite further and adds another barrier to eating enough. If they think every bite and sip is monitored, it’s harder for them to eat well.

As a caregiver, you can support your loved one’s attempts to eat without judgment by:

  • Offering them food frequently throughout the day and in small amounts.
  • Preparing various types and flavors of food.
  • Making suggestions of different things for your loved one to try.
  • Preparing what your loved one wants without judging its “healthfulness.”
  • Being supportive, even if someone doesn’t eat as much as you’d hoped.

Don’t Take It Personally

Common eating issues for people in cancer treatment include intermittent nausea, inconsistent appetite and frequently changing likes and dislikes.

For the person preparing meals, this may feel like constant failure. Your loved one mentions a food that sounds good. By the time you’ve fixed it, the moment has passed, their appetite has waned and they say, “Nevermind.”

It’s easy to feel your hard work in fixing what they want is being rejected. Just remember, what sounds great one minute may not be appealing the next. It’s not your fault, and it’s not your loved one’s fault either.

Instead of getting mad, simply acknowledge how hard it is to go through this. Offer to wrap the food and reheat later when they feel better. You can also try something else that’s quick and easy — a few sips of a smoothie or some crackers and cheese.

Understand the How and Why of Changing Nutrition Needs

Under normal circumstances, weight loss can benefit health if a person carries excess fat. However, cancer treatment is far from a normal situation.

With cancer, the body often cannot respond to weight loss in a healthy way. Instead of losing fat during treatment, patients can lose lean tissue. Lean tissue makes up muscle, organs, red and white blood cells and platelets.

In this way, weight loss exaggerates weakness and fatigue. You end up depleting the very cells and tissues needed to keep immunity strong and maintain healing.

Your loved one might put a positive spin on things: “At least I’ll lose a few pounds.”

Be supportive and help them move from old goals (weight loss) to a new goal (maintaining weight) to stay strong through treatment.

Let Go of Regular Routines, Try New Ways to Connect

One of the hardest things around eating habits is breaking routine. If you’ve always had three meals a day, and always eaten breakfast and dinner together as a family, it can feel hard to let go of that pattern.

However, when someone is struggling to eat enough during mesothelioma treatment, three meals a day doesn’t always work well to meet nutrition needs.

Many patients find multiple mini-meals and snacks — just a few bites at a time every 60 to 90 minutes — easier to manage than large meals. If meal times were your time to catch up on the day, create a new ritual.

Make it clear you’re still there for your loved one by saying, “Since dinner isn’t working very well right now, let’s make 5 p.m. our catch-up time whether you feel like eating then or not.”

Honest communication can head off a lot of battles around eating during cancer treatment.

Use Available Resources

Make the most of every eating opportunity with protein and calories.

  • Eat protein-rich foods regularly such as cheese, eggs, chicken, fish, lean beef, beans, tofu and nuts.
  • Drink high-calories liquids such as 100 percent fruit juice or smoothies made with whey protein powder or milk.
  • Add cheese and cooked meats to omelets, sandwiches, soups, salads and casseroles.
  • Increase protein in milk by blending one packet of dry milk powder into one quart of whole milk.
  • Add powdered milk or plain whey protein powder to milkshakes, cream-based soups and mashed potatoes.
  • Ask your loved one, “Salty or sweet?” Tailor each meal or snack to what appeals to them at the time.
  • Snack on cheese, nut butters or roasted nuts.
  • Blend nut butters or ice cream into smoothies and milkshakes.
  • Offer egg-based desserts such as cheesecake, custard and pudding.

3 Key Takeaways from Immunotherapy Expert Teleconference

If you have been diagnosed with mesothelioma, you’re likely considering treatment options.

These might include surgery, radiation therapy or chemotherapy with pemetrexed plus cisplatin or carboplatin. In some cases, bevacizumab may be added to that chemotherapy regimen.

These therapies are standard of care. They are accepted by medical experts as appropriate treatment for mesothelioma and are used by oncology professionals.

If you’ve already received standard of care and related treatments or you’re considering clinical trials, you may be interested in learning more about immunotherapy.

A free immunotherapy teleconference is a great place to start. CancerCare recently hosted a one-hour education workshop featuring three immunotherapy experts. The teleconference is available online for free.

For mesothelioma patients, immunotherapy is mostly available through clinical trials at this time.

Along with many important topics, the experts discussed clinical trials and shared important considerations for anyone thinking of participating in a clinical trial.

Exploring Future of Immunotherapy

Medical oncologist Dr. Mark Kris of Memorial Sloan Kettering Cancer Center (MSK), who served on the panel, discussed the early days of immunotherapy and its future.

“A better understanding of the immune system in recent years has allowed us to capitalize on that early work and develop new immune-based therapies,” Kris said. “Just a short time ago, we didn’t understand the on-off switches of the immune system. Now we understand them better. This has allowed development of drugs that don’t kill cancer directly but enable the immune system to do so.”

Kris explained there are several approved drugs that work this way, and more are on the horizon. None of these are approved for mesothelioma as standard of care, although they may be available through a clinical trial.

“These drugs can improve outcomes for many people,” Kris said. “But the key is working with your health care team to find out if immunotherapy is right for you. I cannot stress enough the importance of clear communication with your team about immunotherapy and whether it should be added to your cancer care plan.”

Consider a Clinical Trial

Clinical trials often are the only way a person with mesothelioma can access immunotherapy treatment options.

“We really need to acknowledge the many decades of patients who have participated in clinical trials over the years,” said panelist and medical oncologist Dr. Gregory Daniels of Moores Cancer Center in California. “We owe them a huge debt of gratitude, because it’s gotten us to where we are now.”

Daniels said clinical trial participation is always voluntary and helps patients gain access to otherwise unavailable treatments while advancing medical science.

“Ask questions so you fully understand, ‘How is this trial helpful to me? How could this trial harm me?’” he added.

To keep patient interests front and center, clinical trials are well regulated. Doctors and nurses familiar with giving experimental treatments conduct these trials.

If a patient is interested in a clinical trial, the medical provider will determine eligibility. That means finding out if they meet the right criteria to safely participate in the study.

For example, this might include undergoing scans or other tests to ensure your heart function is good enough for this particular treatment. Researchers always want to match someone to the right clinical trial for them.

“Clinical trials also allow for stopping the trial early if there is a clear benefit or harm of a newer therapy being tested,” Daniels said. “Most importantly, the patient must be comfortable with getting either treatment.”

Daniels explained trials are randomized, so patients — and often doctors — do not know who is receiving which treatment. The patient and doctor do not have a choice about which treatment will be administered.

“However, most clinical trials do not use a true placebo, meaning no treatment at all. Instead, you might be comparing standard of care against standard of care plus a new drug,” Daniels said. “Either way, you’ll be getting good treatment. No one receives no treatment.”

For mesothelioma patients, clinical trials may be the only way to receive a new drug not yet approved to treat mesothelioma, even if it already is approved for other cancers.

‘Environment Around Cancer’ Matters

Dr. Michael Postow, panel member and assistant attending physician in the melanoma and immunotherapy department at MSK agreed with Kris: Medical science advancements have allowed for a better understanding of the immune system.

“Immunotherapy is often called a ‘fourth modality’ of treatment after chemotherapy, radiation therapy and surgery, but it’s really more than that. It interacts with the immune system, which affects how other therapies work, to give even better outcomes,” said Postow.

Postow stressed that “immunotherapy is about the environment around the cancer. We used to focus only on the cancer cell, and now we know it is important to consider what is happening around the cancer cell that allowed it to grow and reproduce.”

“We now take a more holistic view on how the body interacts with cancer, and what we learn gives us even more targets for future immunotherapy approaches,” Postow said. “This informs how we approach cancer prevention, too.”

Postow explained that, surprisingly, not smoking is actually a form of immunotherapy “because smoking interferes with how the immune system functions.”

“Tobacco and alcohol cause cancerous mutations in cells and chronic inflammation that allow cancer to grow,” he said. “We now know avoiding things that harm the body works against cancer.”

The holistic approach also extends to cancer prevention vaccines.

For example, the HPV vaccine that prevents cervical and head and neck cancers caused by the HPV virus is a form of immunotherapy. For this approach, timing matters.

People are exposed to HPV through sexual activity, so the vaccine is recommended for children before they become sexually active. Getting vaccinated before viral exposure is critical for cancer prevention.

Postow also noted the important role of clinical trials in immunotherapy advances: “While immunotherapy allows for complete elimination of cancer from the body for a few people, a substantial number of patients do not have the response we want.”

A final takeaway from the experts is the importance of cancer survivorship care.

“These therapies are very complicated,” Postow said. “If you receive immunotherapy, you need experienced cancer centers and experienced doctors for appropriate treatment and long-term follow up.”

Mesothelioma Survivor Thriving in High-Altitude Lifestyle

Twenty months after aggressive surgery for malignant pleural mesothelioma, Hatsie H. celebrated with her grandchildren by taking the ski lift to the top of Vail Mountain.

At 11,250 feet above sea level — where many people in perfect health struggle — she took a deep breath and smiled.

They all skied down the mountain together.

“People think pleural mesothelioma is a death sentence, but it’s not. There is hope out there,” she told Asbestos.com. “It was hell for months after the surgery, but I’m feeling really, really well right now. I just told my husband this morning, ‘I’m going to enjoy this while I still can.’”

Embracing ‘The New Me’

Hatsie, 67, whose last name is withheld for privacy reasons, is a retired school teacher and a mesothelioma survivor who has lived in Vail, Colorado for more than 40 years.

She underwent a pleurectomy and decortication surgery with Dr. Raphael Bueno at Boston’s Brigham and Women’s Hospital in 2016.

And while the post-surgery recovery was difficult — Hatsie was readmitted twice with complications — she has rebounded with the fire and determination that has marked her life.

“I call myself now ‘The New Me.’ I’ll never be the same as before. I know that,” she said. “I’m not 100 percent anymore, but there is never a dull moment around here. I’ve scaled back, but I haven’t stopped.”

Adjusting Her Workouts

Hatsie has slowed somewhat, but she is far from done.

She stays active.

Instead of mountain biking on the rugged trails of Vail, Hatsie rides the stationary bike at the gym.

And instead of playing singles tennis, she now plays pickleball, a condensed version of the sport requiring considerably less movement.

She lifts weights, stretches and takes fast walks instead of daily runs.

She mostly stays on the tamer blue and green ski slopes instead of skiing the challenging black diamond trails.

Hatsie flew to San Francisco earlier this month, not to sit and visit like grandmas often do, but to help her daughter’s family move into their new house.

That meant packing and unpacking boxes, washing sheets and making beds. It meant dusting, sweeping and rearranging furniture.

“I’m cheap labor,” she said with a laugh.

She stayed a week before flying home to start planning her next trip.

“I like to stay busy. People look at me and say they can’t believe I have this disease,” she said. They say, ‘You still look great.’ And I say, ‘OK, I’ll take that.’”

Checkups Have Gone Well

Hatsie returns to Brigham and Women’s Hospital to meet with Bueno every six months, getting scans and checkups that have shown no new tumor growth.

The staff there often marvels at her pace when she greets them. The nurses struggle to keep up with her stamina tests.

“Someone told me, if I can get to the five-year mark, I’ll be in good shape. That’s my goal now, five years and beyond,” she said. “I focus on staying strong, staying positive, exercising. I think that helps.”

Hatsie recently returned from a trip to Amsterdam with her book club. She and her husband will travel to Red Lodge, Montana, this summer to visit their son and his family.

Pleural mesothelioma survivor Hatsie H. in Amsterdam

Pleural mesothelioma survivor Hatsie H. in Amsterdam

She expects to go hiking.

They will take their annual trip this winter to Naples, Florida, where she still expects to swim in the Gulf of Mexico and walk on the beach daily.

“I used to be a really good swimmer, but now after surgery I kind of just piddle around out there,” she said. “It’s a little discouraging, but I don’t dwell on anything negative. I have no complaints. None. I just sometimes think, ‘I’m too young for this.’ If it would have hit me in my 80s, that would have been better.”

Shocked by Mesothelioma Diagnosis

Hatsie and her family were stunned by the diagnosis of pleural mesothelioma.

She was puzzled initially by her sudden shortness of breath, having thrived at high altitude for most of her life.

But one test led to another. The fluid in her lungs was drained, and it returned. Nine months after those first symptoms appeared, her diagnosis was delivered.

“It was shocking, devastating really. But I’m a fighter, always have been. I knew we needed to find a specialist, so we went to Boston,” she said. “I didn’t over-research this, though. I didn’t want to know too much, like when it really gets bad. I didn’t want to know that ahead of time. I didn’t need that fear factor. I want to remain positive.”

Living a Full Life in Colorado

Hatsie and her husband have talked about moving permanently to a lower elevation — where her breathing might be easier in the future — but leaving behind their high-altitude, high-energy life in Vail will not be easy.

Although she grew up in Boston, she moved to Colorado for college and fell in love with the place. She met her husband there when he worked for a ski company, and she was taking tourists four-wheeling across the countryside in jeeps. They raised their kids there.

She also taught school there, for 37 years. Hatsie taught in a rural, two-room school house. She had to chase the wild turkeys off the playground every day, so the kids could have recess without being attacked.

“The kids would come to school on tractors, on horseback sometimes,” she said. “I loved the atmosphere. We’ve gone from sleeping in tents, to the back of his pickup, to a camper. Skiiing and being outdoors is our life.”

She also discovered her knack for oil painting — a hobby she pursues today — after taking her first art class 13 years ago. Some of her landscape portraits have been sold in local shops.

Their home today, which sits on a beautiful five acres in Vail, includes a barn and her small art studio.

“I don’t think about this [mesothelioma] very much. When you’re doing treatment, sure everything is horrible, but I’m past that for now,” she said. “I love where I’m at. Skiing is just cruising downhill. I hope to do that for a long time.”

Discovering Hope in the Face of an Incurable Disease

In 1995, I began my mental health counseling career working as an oncology support and education specialist with patients and caregivers at a rural cancer treatment center in a hospital setting.

It was the first of several positions at cancer treatment centers, university research departments and private practices.

I led cancer support groups and taught classes on coping with the challenges of cancer treatment to cancer patients and caregivers.

When people learned I worked with cancer patients, they assumed all those patients were in pain, felt ill and were dying. I changed their assumptions using what I had learned from my cancer patients, including those with mesothelioma: There is hope along the cancer journey.

I explained it’s possible to live a long time with cancer and some cancers are curable.

In the more than 20 years I have worked in oncology, the U.S. Food and Drug Administration has approved many new cancer treatment options that offer patients more effective therapies with fewer side effects.

Today, patients have access to less invasive surgical options, better technology to track treatment progress and more effective medications to lessen chemotherapy side effects.

Advances in Mesothelioma Treatment

In 2014, I began working with The Mesothelioma Center as the facilitator of the advocacy organization’s mesothelioma support group.

Since the support group’s inception, it’s been so encouraging to hear how experimental therapies have advanced from clinical trials toward FDA approval for treating mesothelioma.

Targeted therapies are the wave of the future. Researchers are testing some of these novel treatments for other cancers, such as lung cancer, on patients with mesothelioma. The results are encouraging.

Each month we hear from support group members participating in new and exciting immunotherapy and gene therapy clinical trials.

There is also increased research into the role diet, nutrition and other lifestyle behaviors play in reducing the impact of treatment side effects such as fatigue and peripheral neuropathy.

While mesothelioma is an incurable disease, and some people do not survive beyond its two-year life expectancy, more patients are living longer and with an improved quality of life.

It is not uncommon to hear about patients who stopped treatment for several years and show no evidence of active disease. It is encouraging to hear these mesothelioma patients feel good enough to travel or resume their prediagnosis lifestyle activities with their loved ones.

Shifting Your Focus, Improving Your Outlook

When patients and caregivers focus on the incurability of mesothelioma, it’s easy to become discouraged and lose hope.

But the length of time a patient spends in treatment or followed by their oncologist can be an opportunity. Those months or years may give you time to take advantage of new treatment options that were unavailable when you were diagnosed.

In our support group, we have group members who were diagnosed five years ago and have been in and out of treatment since that time. But now there are treatment options and clinical trials that didn’t exist years ago. For these people, time equals hope.

Switching your expectations from finding a cure for mesothelioma to controlling the disease also opens the door to hope.

Many patients focus solely on a cure as the only positive outcome, but mesothelioma that is controlled or stabilized will not end your life.

Most oncologists these days tell their patients cancer is a chronic illness, and the goal is to control the spread and impact of the disease. It’s common for cancer patients to spend periods of time in and out of treatment. That allows patients some breathing space so they can return to work or just have fun.

Learning from a Shared Mesothelioma Experience

Many members of our support group say they find hope when connecting with other mesothelioma patients and caregivers. Sharing their fears and hearing others describe their experiences grows a sense of realistic optimism among group members. It also lends validity to every person’s mesothelioma experience.

Each month, group members share their ups and downs, whether it’s hearing news about positive scan results or the struggles of treatment side effects and recovery from a challenging surgery.

Regardless of the good or bad, group members say they find comfort and support in the shared experience of mesothelioma.

I understand that feeling hopeful is not always easy when you or a loved one has mesothelioma. Despite the difficulties, my cancer patients continue to show me new ways to find hope in the face of adversity.

5 Fad Diets Bad for Mesothelioma Patients

When friends and family members learn of your mesothelioma diagnosis, they may offer well-intended nutrition advice, including suggestions to follow a fad diet.

While fad diets have been around for hundreds of years and exhibit remarkable staying power, that doesn’t make them right for someone with mesothelioma.

Proper nutrition is a critical component of mesothelioma treatment. You need fuel to heal, maintain immunity and rebuild your body during and after treatment. Fad diets can fail to provide the right balance of fuel.

Ketogenic Diet

The original ketogenic diet — often referred to as the “keto diet” — provides 80 to 90 percent of calories from fat. The goal is to force the body to use only fat and ketones, the byproduct of burning fat, for energy. This is called ketosis.

Carbohydrates must be strictly controlled. Eating just a few too many grams of carbohydrate can prevent ketosis. You may end up with an unbalanced, very high-fat diet that isn’t even ketogenic.

Researchers are investigating this nutritional approach, but there aren’t enough data to know which cancer patients may benefit from the diet and who should avoid it altogether.

Investigators have reported high dropout rates from ketogenic diet studies due to difficulty following the required eating plan. This is especially true for cancer patients who may not feel well.

Side effects of this eating pattern include constipation, fatigue and muscle cramps. Many people lose weight rapidly on a ketogenic diet, which can hinder mesothelioma treatment.

Vegan Diet

For many people, being vegan is a lifestyle rather than an eating plan. Vegan diets exclude all animal products such as dairy, eggs, meat, poultry, fish, shellfish, gelatin, honey and anything derived from animals.

A well-planned vegan eating pattern can reduce risk of heart disease, diabetes and hypertension. However, it is not a good choice for many people undergoing cancer treatment.

The most common nutritional problems for mesothelioma patients include consuming too little protein and too few calories. Vegan diets can worsen these issues.

Plant protein is bulky. Beans provide protein as well as complex carbohydrates and fiber. Under normal circumstances, this is a good thing, but with mesothelioma, you fill up before getting enough protein.

Vegetables and fruit also provide a large volume of food with fewer calories. Again, you can feel full before you’ve eaten enough to support your body’s ability to tolerate cancer treatment.

Cleanse

Cleanses are promoted as a way to remove toxins from the body. A cleanse won’t do that, but it may remove money from your wallet.

Commercial cleanses can require expensive juices and powders, none of which show proven health benefits. Home-prepared cleanses may cost less, but they are not shown to improve health, either.

A dietary cleanse will leave you short on calories and protein, contributing to fatigue and weight loss. In fact, many cleanses are promoted for weight loss. If you’re in active cancer treatment, losing weight rapidly can be harmful.

People with mesothelioma often require more protein and calories than usual to meet basic nutrition needs, withstand cancer therapy and recover.

Because cleanses eliminate many common foods from the diet, you may have trouble getting enough to eat, making it harder to receive your treatment.

Mesothelioma Nutrition Guide

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Eating right and balancing your diet while undergoing mesothelioma treatment can help ease your symptoms.

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Low-Carbohydrate Diet

The typical American diet provides 45-50 percent of calories from carbohydrates, and most people are accustomed to meeting around half of energy needs with carbohydrates.

This is why a low-carbohydrate diet looks very different from typical fare. If you’ve never followed this type of plan, learning to eat this way during cancer treatment may be even harder.

Mesothelioma and its treatment can cause taste changes, fatigue, early fullness and nausea. To cope with these changes, many people gravitate toward bland carbohydrate foods such as noodles, crackers and toast.

Intentionally restricting only the appealing foods can leave you unable to eat much at all. Malnutrition is associated with more severe treatment side effects and can make it harder to complete mesothelioma therapy as planned.

Fasting

Fasting refers to voluntarily withholding food for a specified length of time, but calorie-free liquids, such as tea, black coffee and water, are encouraged in nonreligious fasts.

Going without calories for longer than normal may change how your body uses medication, including chemotherapy and targeted therapies. If you have diabetes, fasting may cause dangerous blood sugar lows.

For some cancer types, fasting may worsen an already challenging situation. Many patients with malignant mesothelioma experience unintentional weight loss before treatment begins.

Fasting may worsen treatment side effects by exacerbating pre-existing malnutrition. If you have lost weight without trying, this is a red flag your body is experiencing severe stress, and fasting will not help.

Researchers are studying fasting for cancer patients, but they are a long way from proving the approach improves quality or length of life in people with mesothelioma.

Make Nutrition a Priority

When it comes to nutrition, what works for one person with cancer may not be right for someone else fighting the disease.

Make eating well a priority. If you are losing weight without trying or having problems eating enough, ask to see a dietitian.

An experienced cancer dietitian can develop a nutrition plan best suited to your needs.

Discover the Anti-Cancer Powers of Celery and Parsley

Unlike flashier “super foods” we hear about daily, parsley and celery get no respect. Parsley is tossed on a steak plate as garnish. Celery is dunked in Bloody Mary drinks at the brunch table but not used in much else.

It’s unfortunate these foods have a reputation as empty calories, because they contain a nutrient being studied for its ability to fight cancer.

Preclinical research shows this nutrient, called apigenin, has anti-cancer activity against mesothelioma cancer cells. This shouldn’t be surprising: Many natural substances are shown to interrupt cancer cell development and spread.

Over 50 percent of chemotherapy drugs come directly from plant substances or were developed in the lab by modifying a plant chemical into a drug.

Active Against Mesothelioma

Apigenin is a plant nutrient researchers are studying for the treatment of mesothelioma.

Existing cell and animal research shows apigenin:

  • Supports the function of tumor-suppressor genes.
  • Improves cell-to-cell communication.
  • Hinders gene activity known to promote cancer cell growth.
  • Curbs new blood vessel development around cancer cells.
  • Promotes cancer cell death.
  • Improves efficacy of chemotherapy drugs.

Population studies in humans also suggest a connection between regularly eating apigenin-containing foods and reduced risk of several cancers.

The Mediterranean diet, which is widely studied for its ability to reduce risk of chronic diseases, including cancer, is naturally full of foods containing the nutrient.

An apigenin clinical trial at The Ohio State University is looking at potential health benefits of banana bread with celery for women at high risk of developing breast cancer.

Nutrients vs. Cancer

Decades of research support the cancer-preventive role plant foods play. A dietary pattern based around plants reduces cancer risk.

You don’t need to be a vegetarian to benefit. All you need to do is fill around two-thirds of your plate with whole plant foods such as vegetables, fruit, nuts, beans and whole grains. Fill the rest with animal foods.

Plants appear to reduce risk in part because of the phytonutrients they contain. “Phyto” means plant, so phytonutrient means nutrients found in plants.

There are thousands of phytonutrients, including many familiar players, such as beta-carotene and chlorophyll, a substance found in all green plants, in the foods we eat.

Apigenin is just one of many promising, cancer-fighting nutrients.

Mesothelioma Nutrition Guide

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Eating right and balancing your diet while undergoing mesothelioma treatment can help ease your symptoms.

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Variety Is Important

Apigenin belongs to a family of food substances often touted as “cancer fighters,” which also includes nutrients found in red wine, green tea and dark chocolate.

Parsley, chamomile tea and celery are excellent sources of apigenin and related nutrients. Other herbs — mint, oregano, thyme, cloves, lemon balm and sage — also contain it.

Additional places you’ll find the nutrient include artichokes, onions, oranges, tea, spinach, rutabagas and lettuce. Foods containing apigenin are good additions to most diets.

However, nearly all nutrients studied for anti-cancer activity can be good extras to an eating plan. Fill your plate with plants of all colors, shapes and flavors.

Figuring Plants into Your Mesothelioma Treatment

Plants are powerful medicine but will not cure mesothelioma or any other cancer.

Eating well during cancer treatment is important. Depending on personal circumstances, healthful eating can look different for different people.

The most common nutritional problems for mesothelioma patients include consuming too little protein and too few calories.

If you’re struggling to eat enough to maintain your weight, you can juice fresh fruits and vegetables to obtain nutrients without filling up.

Don’t own a juicer? Toss some fruit or vegetables in a blender with water and then strain with a cheesecloth. Most grocery stores sell cheesecloth, which is inexpensive.

If you are having trouble meeting protein and calorie needs, ask your doctor for a referral to a registered dietitian experienced in working with cancer patients.

Managing Unintentional Weight Loss During Mesothelioma Treatment

Mesothelioma cancer and its treatment may cause a variety of side effects.

These symptoms can diminish a patient’s ability to eat well and lead to unintentional weight loss — a person losing weight without trying.

Some patients put a positive spin on cancer-associated weight loss.

Unfortunately, losing weight unintentionally during treatment can make your treatment harder and less effective.

If your weight is decreasing and you’re not on a diet, it’s a red flag.

Harms of Unintentional Weight Loss

Under normal circumstances, weight loss can benefit your health if you carry excess fat.

However, cancer treatment is far from a normal situation.

With cancer, the body often cannot respond to weight loss in a healthy way. This is particularly true if the weight loss is unintentional.

The stress and inflammation on the body during cancer care can prevent the use of fat for fuel. This is true even in people who carry excess body fat or have been told they are overweight or obese.

Instead, patients end up losing lean tissue. Lean tissue is made up of muscle, organs, red blood cells, platelets and immune cells. This is why losing weight unintentionally during cancer treatment is so harmful.

Not only do you feel weak and fatigued from losing muscle mass, but the very cells and tissues needed to keep your immunity and your body strong through treatment are depleted.

This can lead to more severe treatment side effects, treatment dose reductions and breaks in scheduled therapy. These things hinder recovery and make it harder to reach your treatment goals.

Who Loses Weight During Cancer Treatment?

Anyone with cancer can lose weight during treatment. However, certain cancers significantly raise the risk of unintentional weight loss.

People with malignant mesothelioma, myeloma or cancers of the lung, head and neck, kidney, esophagus, pancreas, stomach or intestinal tract often experience unintentional weight loss during treatment.

Cancer patients can require more protein and calories than usual to meet basic nutrition needs, withstand cancer therapy and recover.

An April 2018 study published in the British Journal of General Practice found many cancer patients lose weight without trying before treatment even begins.

Some treatments cause pain when eating and an inability to properly digest food and absorb fats, carbohydrates, vitamins and minerals. Although it sounds scary, a feeding tube and special nutritional formulas can be lifesavers.

All of these things highlight the importance of consulting with a registered dietitian who can develop a tailored plan to meet each patient’s individual nutrition needs.

Mesothelioma Nutrition Guide

Free Mesothelioma Nutrition Guide

Eating right and balancing your diet while undergoing mesothelioma treatment can help ease your symptoms.

Get Free Recipes & Tips

Make Good Nutrition a Priority

The most common nutritional problems for mesothelioma patients include consuming too little protein and too few calories.

Try the following tips to help yourself meet protein and calorie needs:

  • Eat Often: Enjoy multiple small meals throughout the day instead of three large ones.
  • Snack Frequently: Snack whenever you are hungry. Enjoy what you like without guilt about healthy or unhealthy foods.
  • Make Liquids Count: Focus on high-calorie liquids. Try smoothies with protein powder, bananas and peanut butter.
  • Skip Empty Calories: Avoid large amounts of tea, coffee or diet drinks and foods.
  • Sip Sparingly: Have most liquids after meals. Liquid can fill you up before you have a chance to consume the nutrient-dense foods on your plate.
  • Focus on Protein: Include poultry, fish, eggs, beans, nuts or peanut butter at each meal or snack.
  • Juice It: Juice fresh fruits and vegetables to obtain nutrients without filling up. If you don’t own a juicer, blend fruit or vegetables with water, then strain with a cheesecloth. Cheesecloth is inexpensive and available at most grocery stores.
  • Have Breakfast for Dinner: Consume your favorite foods any time of day. If you love breakfast foods, have them for lunch or dinner.

Mesothelioma treatment can take a toll on your ability to eat well. Ask your doctor or nurse for a referral to a registered dietitian who is a cancer nutrition specialist.