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Mesothelioma Expertise

Lisa Hyde-Barrett, RN Mesothelioma NurseResearching “mesothelioma” can be very confusing. You hope for accuracy and truth when you are desperate to find the information you need. We write from our experiences actively caring for mesothelioma patients. There is an immense amount of information on the internet, and some is quite accurate. Ours, however, is unique because we are in contact daily with people who have mesothelioma. We watch some people struggle with the disease, and see others learn to live again. We have the distinct advantage of truly knowing people with mesothelioma and we can put a face to symptoms and side effects.

Today’s blog is meant to reassure you that the information we provide is from our personal experience caring for patients who have been diagnosed with mesothelioma. This is a form of expertise, and we want to share this expertise with you. We do not profess to have all the answers by far, but we have true experience.

Over the years, we have built on these experiences. We have had the privilege of knowing and working with families, patients and other members of the team involved with patient care. We are in constant communication with physicians who care for these patients. When we see that a patient is having an issue, we are only a phone call away. We work with one of the most experienced groups of physicians who care for mesothelioma patients. We are Registered Nurses working with a team of mesothelioma specialists.

We thrive on the knowledge that the specialists are working towards a cure for mesothelioma and dream about the day that there is a cure for this disease. Until then, it is our goal to provide you with accurate information.

My goal in writing this is to advise you to be careful what you read and make sure that your information is relevant. We do not have all the solutions, but we care for patients and write about our experience. When searching out your information, take the time to find out the source of the information. Are these people writers? Are they connected to mesothelioma patients? Do they have any hands-on experience with this disease? Most of us assume that one writes about a very specific topic they must be an authority, but this is not always true.

This diagnosis is a challenging one for patients, loved ones, family members and friends. In this blog, we hope we give you accurate and helpful information, and please contact us if you need to know more about our expertise and credentials.

Loneliness

Eleanor Ericson Mesothelioma NurseRecently, on a home visit to a patient I asked, “How have you been since the last time I was here?” He said he was fine, but I thought he looked sadder than when I saw him last. After a brief cry, we started talking about how he really felt.

My patient had been affected by a public health issue: exposure to asbestos leading to a diagnosis of malignant mesothelioma. He also was affected by another public health issue becoming an epidemic – loneliness and social isolation. Because loneliness is such a problem for mesothelioma patients, I encourage caregivers and medical providers to take time to listen to the patient, really listen to what they are saying and what they are not saying. This can have a profound effect on their physical and mental health. To be our healthiest, physically and mentally, we need to relate to each other. The strength of the bonds that we have with other people can help us feel connected, and part of something.

Loneliness is an epidemic that affects people throughout the world. Not only does it affect your mental health, it has a direct effect on physical health. The physiological way that loneliness affects health is that it can trigger some of the same hormones that your body makes when it is under stress. Long term stress is detrimental to health.

Doctors in England have recently recognized loneliness as a public health epidemic. This past summer, Prime Minister Theresa May appointed a national Minister of Loneliness. Indeed, by 2023, doctors in England will write prescriptions for cooking classes and walking groups as part of a government initiative to combat loneliness. This is a new program called “Social Prescribing.” The plan is for doctors to recommend group activities, such as cooking classes, walking groups and art clubs, instead of medication. In fact, the British government reports that about 200,000 older people across the country haven’t had a conversation with a friend or relative in more than a month.

It is not just the elderly who are suffering from loneliness. In 2018, Cigna, a health care insurer, conducted a study indicating half of all Americans reported they feel alone, isolated, or left out at least some of the time. In fact, American Millennial and Generation Z adults – about 75 million people total – are lonelier than any other U.S. demographic and report being in worse health than older generations. Being connected on the internet is not the same as human interactions and relationships.

The physical toll that loneliness takes on mortality is suggested to be the same as smoking 15 cigarettes a day, making it more dangerous than obesity. People who are lonely and isolated are more at risk for heart disease, stroke, immune system illnesses, and often have a harder time recovering from cancer. Loneliness has also been found to contribute to premature death for people of all ages.

In the age of social media, how can we combat this potential epidemic? We can all make a conscious effort to connect with people. Try to connect with people in your community, church, and neighborhood. Do not assume that everything is okay, or that you would be intruding on someone’s privacy. People who find themselves feeling isolated and alone can benefit from support groups, adult classes, volunteering – any activity fostering connections with people will help.

Listen to your neighbors, family, and friends. Reach out and connect.

Sacrifice

Lisa Hyde-Barrett, RN Mesothelioma NurseIt always amazes me how much people will sacrifice to treat their mesothelioma at a major treatment center. Recently, I met someone who came to us from South America, and another family from the Middle East. Not only is the geographic distance an issue, a significant language barrier exists as well. Another example is a young woman who moved to a neighboring state to be closer to radiation therapy at a specialized center. Just last week, we met an elderly couple taking an Uber to treatment at a mesothelioma center because driving was too overwhelming. What patients will do for specialized care is endless.

Most people think they would do anything when faced with a rare cancer diagnosis, but often, obstacles get in the way. Let’s face it, it is easier to remain in the comforts of our own home, with the things we know and the people we love. Yet, patients determined to treat their disease will sacrifice the comforts of home to access cutting-edge care. Further, they will sacrifice days of their lives to get a second opinion and explore other options.

Living in hospitality homes or local hotels is not easy, but that may be the cost of going to a mesothelioma center. We hope patients understand that health care professionals know the sacrifices made when traveling distances to be treated at a center. There are resources available and, although it helps, sometimes it may feel like it is not enough. Mentally and physically these are challenging times for patients and caregivers who choose to make sacrifices during their journey.

The flip side to all this is there may be treatment for your mesothelioma, whether it is surgical, chemotherapy, radiation, palliative care or alternative care. I am one hundred percent sure that there are more options at a mesothelioma center than at a local community hospital. Your local medical center is probably a great institution, but simply does not have the experience that a specialized mesothelioma center offers. Having access to top medical treatment is so important. When days and nights seem daunting and you feel like your hotel walls are closing in on you, stop and pat yourself on the back. Remember, you are in pursuit of excellent treatment and a chance to beat this disease. Success comes hard and often must be fought for, but everyone’s life is worth it. Being fortunate enough to know about a place that can offer expert care is a gift. Not everyone knows that these centers exist and that there are treatment options. Mesothelioma is a rare disease and although you feel confident in your local practitioner, we encourage you to make the sacrifice and go to a mesothelioma center.

Individuality

Eleanor Ericson Mesothelioma NurseWe have learned something from every patient or family member that we have met over the years. The lessons have been as diverse as the patients and family members themselves. Some have been cultural lessons; a great deal has been about human nature. how relationships are affected by being diagnosed, and how we can help and support them has been an ongoing focus of ours. Relationships and how a cancer diagnosis affect the reactions of family members, can be a source of both comfort and stress during their journey with mesothelioma.

Sometimes when faced with big, uncomfortable, situations we become overwhelmed. These feelings can lead to inaction, denial, or thoughts of overwhelming despair. The Cambridge English Dictionary has a definition of overwhelming that fits for patients diagnosed with malignant mesothelioma. It is, ”1. difficult to fight against 2. very large or very great 3. very great or very strong.”

Being diagnosed with a rare cancer can be overwhelming. The person who is diagnosed is dealing with his or her own emotions. Often, as we have witnessed they are the one in a relationship that usually leads the couple or family. The family, or the other person in the relationship looks to them for direction. As every relationship is unique what we observe to be a couple supporting each other or not supporting each other can be the way the relationship works. Not all relationships are “healthy” or supportive. A diagnosis of cancer can be a stress that is added to an already stressful situation.

At a recent meeting with newly diagnosed mesothelioma patients, one of the patients and his wife were in attendance. As the meeting progressed the wife had to leave the room. The information, what they had already been through to come to a mesothelioma center was too much for her. The patient explained that they lead a simple life and coming to the city had been something that had been difficult for her. Faced with the loss of her life partner she wanted to go home to their life.

When faced with big challenges in life, we all have our own ways of coping. We lean on those around us for affirmation that we are choosing the right path, that what we have decided is what is best for us. Malignant mesothelioma can seem like a mountain to climb, with no guarantee that you will make it to the beginning hill. This journey starts with small steps.

While talking after the meeting with the wife who was overwhelmed at the meeting, once again we realized that the journey with mesothelioma is different for everyone and making the first steps are often the hardest. The difficulty that they had experienced getting to the center, hearing the information, realizing what they were faced with had overwhelmed her. The logistics of treatment, how to return to the center, where to stay, the financial implications were all adding to their stress. Talking and drawing on the experience of the staff made it seem possible. Leaving with a plan had helped.

As our relationships are unique so is everyone’s mesothelioma. The one size fits all approach does not work for treatment of mesothelioma nor does it work when supporting patients and families.

No Cure

Lisa Hyde-Barrett, RN Mesothelioma NurseAs I was walking down the hall yesterday I heard someone saying, “My cancer is not curable but is treatable.” To date we have no cure for malignant mesothelioma, but many more treatments are available than ever. Surgery, radiation, chemotherapy, immunotherapy, alternative therapy, and clinical trials are all options for the Meso patient. This may or may not seem like a lot of choices but looking back to 10 years ago- it is huge. To have an option has not always been the case when dealing with a mesothelioma diagnosis.

Another benefit that was not so prevalent ten years ago is the support therapy that is available because of social media. I have cared for so many patients who have participated in support groups on-line, which have helped them through their mesothelioma journey. They may not be for everyone but for many they have helped make the journey less lonely.

In the United States a rare disease is defined as a condition that affects 200,000 people or less. Rare diseases, also known as orphan diseases, fall into that category because drug companies are not interested in developing treatments. This research can be costly and only a small population will benefit. Rare diseases need champions and with mesothelioma the community has champions of many different backgrounds and expertise. Although there are many treatment options, not everyone is a candidate for all options. Despite what you want, your disease and body determine the treatment that will be offered.

If you have been diagnosed with mesothelioma, ask yourself what it is that you want. The most important thing is doing what you want and having peace of mind during the journey. Surround yourself with knowledgeable professionals who can explain your options and the disease. Mesothelioma Awareness Day was celebrated on September 26, 2018. Many people shared on social media their loved ones who were and are affected by mesothelioma. As I scrolled through the entries it was staggering how many people have been affected. The number of people in someone’s life family, friends’ acquaintances, relationships that are changed due to a diagnosis of malignant mesothelioma. The pictures make it so much more real than just the statistics.

The statistics of survival are not favorable but again that too has improved with knowledge and research. If you have been diagnosed with mesothelioma or your family member has, you will agree the facts are overwhelming and scary. The flip side is that there are people currently living their lives taking trips, spending time with family and friends, and doing what they want who are being treated for mesothelioma.

This year has been an exceptional year in the world of mesothelioma. We have seen progress and hope. There have been survivors and memories being made by some while undergoing treatments. In the words of one of the first mesothelioma treatment pioneers, the late Dr. David Sugarbaker, he always spoke about hope and that it had to be part of the equation. Make the most of your days, stay positive and keep moving.

In Memoriam – Dr. David Sugarbaker

Dr. David Sugarbaker MesotheliomaServices were held for Dr. David J. Sugarbaker (August 5, 1953 – August 29, 2018) on Saturday September 1, 2018. Dr. Sugarbaker was a man who has been described by many of his co-workers as a man bigger than life. For mesothelioma patients, he was a hero who gave hope to patients when they had been told there was none. For individuals that were fortunate to work with him, he was compassionate, kind, a passionate man with a work ethic that few could match.

To sum up a person’s life in a few words, at a memorial service, in a conversation is not possible. The many brilliant accomplishments he achieved professionally will live on and affect the lives of patients and families for many years to come. His varied interests, his expertise on many subjects, his unfailing enthusiasm to get going, get it done, were legendary.

One of 10 children, son of a surgeon, mother was a nurse, raised in Jefferson City Missouri. He attended Wheaton College, Cornell Medical School, residency at Brigham and Women’s Hospital, established the Thoracic Division of Surgery at the Brigham and Women’s Hospital. He founded the International Mesothelioma Program at Brigham and Women’s Hospital in 2002. He developed and pioneered treatment options for patients with malignant mesothelioma over the course of decades, researcher, scientist, patient advocate, accomplished successful surgeon. Dr Sugarbaker spent the last four years of his professional life establishing a mesothelioma program at Baylor- St Luke’s Hospital in Houston Texas. A brief limited professional resume of Dr. Sugarbaker’s many accomplishments.

Dr. Sugarbaker’s professional accomplishments are the side of him that was known publicly. His personal accomplishments are just as impressive. He leaves a wife and six children. When talking about their father the perspective of what kind of a father Dr. Sugarbaker was, how involved with his children he was, the impact on their lives was as impressive as his professional accomplishments. His family was the center of his life. The tributes from his children were a reminder of the depth of love he shared for his wife Linda and his children and grandchildren.

Dr. David Sugarbaker was a talented healer who was able to offer hope to people when there was none.  In addition to the thousands of patients and families lives that he touched, Dr. Sugarbaker was a mentor to hundreds of thoracic surgeons. On a beautiful late summer day many came back to Boston to pay their respects and to thank him for his expertise and mentorship over the years.

Having had the privilege of working with Dr. Sugarbaker for over 30 years there are many superlatives that we can use to describe the type of man, surgeon, leader he was. To us he was generous, kind, always encouraging, with a great sense of humor. He was a visionary that was able to make an impact on all he touched.

About 10 years ago we accompanied a patient we wanted to get home to his follow-up mesothelioma appointment with Dr. Sugarbaker. We had been asking him frequently when and how we could help get him home. He greeted us by saying, “look who you brought with you today, your travel agents!”

It has been a privilege to have known Dr. David Sugarbaker, to have heard his stories, see him interacting with patients and families, and watched as he inspired the next generation of thoracic surgeons.  The mesothelioma community has lost a leader.

Rest in peace Dr. Sugarbaker, you are missed, job well done!

– Lisa and Ellie

Care for The Caregivers

Lisa Hyde-Barrett, RN Mesothelioma NurseThe role of the caregiver is an underestimated position when someone is ill. With a serious rare cancer diagnosis like malignant mesothelioma, the caregiver is a vital participant in the team. When does one begin to assume the role of the caregiver? Who decides who will take this role? Usually the caregiver is someone who has a close relationship with the person diagnosed, a wife, husband, a significant other, an adult child of the patient. Statistically it is usually a woman who assumes this role.

The responsibilities that come with this role can be overwhelming. It is a difficult role as it can affect the caregiver physically, psychologically, and emotionally. Most people are unprepared for this new all-encompassing role.

The number of individuals who at one time in their lives will assume a care giver role is staggering. According to the National Alliance for Caregiving in the U.S. and AARP, there are 35.2 million Americans who provided unpaid care to an adult 50 years of age and older within the last year.

For caregivers of mesothelioma patients, the challenges can be daunting. It can start with educating yourself about a rare disease. Getting familiar with medical words and phrases that are as difficult to pronounce as they are to understand. Accompanying their loved one to many different appointments, traveling to consultations, taking notes, assisting with physical care- bathing- grooming. Logistically organizing appointments, lodging, medications, all while emotionally supporting your loved one.

For the caregiver, mesothelioma diagnosis and the havoc it reeks can become a focal point of your life. The diagnosis can alter your life irrevocably as well as the person diagnosed. In addition to these endless tasks there is the difficult conversations that must be had. What are the patient’s wishes? What are their goals of treatment, their fears? What do they want? The answers might not be clear, but the topic has been addressed and it is on the table.

Unfortunately, there is no set of rules that one can follow to become a caregiver. In some ways it is on the job training whether you are ready or not.

As important as the role of caregiver is to a person diagnosed with malignant mesothelioma, the vital part for the caregiver has to include taking care of themselves. Over the years we have seen fantastic caregivers who forgot about themselves. They have suffered and continue to suffer long lasting effects of that decision.

On the Family Caregiver Alliance website, there is a page dedicated to care givers self-care. Some of the points are things that we see every day with caregivers of mesothelioma patients. Some caregivers learn so much about mesothelioma that they become experts. Another suggestion is to get support. There are support groups available, talk to people if support groups do not interest you. Forgive yourself -no one is perfect and no one no matter who you are can take care of someone 24/7 without a break. Allow time for yourself. You had a life before this diagnosis. Allow yourself time away to recharge. One of the most important points they make is to change guilt to regret. Guilt is you did something wrong, regret is that you are in a difficult situation and sometimes you have to make difficult decisions, but they are not wrong.

Care-giving is challenging and all encompassing, remember to be kind and forgiving to yourself and to take care of yourself.

EPA and Asbestos

Eleanor Ericson Mesothelioma NurseFor patients and families that are diagnosed with malignant mesothelioma in addition to dealing with this deadly disease there is the lingering question: why did I get mesothelioma? Could it have been prevented? Was I exposed to asbestos? When was I exposed?

Malignant mesothelioma is a rare fatal cancer. For the great majority of patients that are diagnosed with malignant mesothelioma the cause can be traced to exposure to asbestos. Asbestos historically has been used in hundreds of products that individuals use. Asbestos is a naturally occurring mineral and for centuries it has been used in products for its insulating properties and fire proofing qualities. The resulting products are varied and found in many industries.

The economic impact of asbestos and its properties is huge. The impact of a cancer diagnosis is devastating. The politics of health vs. wealth is something that victims and their families are thrust into when diagnosed with malignant mesothelioma.

The leading supplier for asbestos in the United States has been Brazil. In December of 2017 Brazil banned the mining, use and commercialization of the material. In 2016 the total imported metric tons of asbestos from overseas was 705 metric tons. Of that 705 metric tons, 95% of the imported asbestos came from Brazil. The remaining amount was imported from Russia. With Brazil having banned manufacturing Russia has an opportunity to become the biggest supplier of asbestos to the United States.

The link between exposure to asbestos and the development of mesothelioma was first detected in the late 1940’s. The incubation period is from 20- 50 years. An individual can be exposed to asbestos as a young person and not develop the disease until decades later.

Asbestos is not banned in the United States. Asbestos is still found in brake liners, potting soil, chlorine factories and firefighters clothing. In 1975 the EPA- Environmental Protection Agency – banned asbestos from building materials. In 1989, using the Toxic Substance Control Act, the EPA had a ban on nearly all asbestos products. This ban was appealed by the 5th U.S. Circuit Court of Appeals in 1991. In 2016 the Toxic Substances Control Act was amended and required the EPA to evaluate the risks of all existing chemicals used commercially in the United States. Asbestos is one of the first chemicals to undergo evaluations under the new law.

In the news in the past few months it is noted that the Environmental Protection Agency is looking at a risk evaluation of asbestos to “determine whether a chemical substance presents an unreasonable risk of injury to health and environment, without consideration of costs or other non-risk factors, including an unreasonable risk to a potentially exposed or susceptible sub population identified as relevant to the risk evaluation by the Administrator under the conditions of use.”

There are groups that family members of patients who have been diagnosed with mesothelioma have formed to work toward banning asbestos, including the Asbestos Disease Awareness Organization.

If you have witnessed one person suffer with the devastation that a diagnosis of malignant mesothelioma brings onto a person and their families’ lives, there would be no question that asbestos should be banned totally for the good of the public. Wealth means nothing without health.

Immunotherapy and Mesothelioma

Eleanor Ericson Mesothelioma NurseCancer research progress can be slow.  We are always encouraging patients to enter clinical trials. The facts remain that less than 5% of all patients with cancer enter a clinical trial.  Malignant mesothelioma is a rare disease making research even more important. Progress to a cure will only come if scientists are able to study the patients and the impact of the disease on them. When progress is made we need to celebrate it.

In the June edition of Nature Medicine there is an exciting story of a 52-year-old woman from Florida who had metastatic breast cancer and was told she had only a few months to live. Her breast cancer had metastasized throughout her chest and her liver. She had tumors the size of golf balls and was in pain from the tumors pressing on her spinal column, making any movement painful. She joined a clinical trial at the National Cancer Institute, under the direction of Dr. Stephen Rosenberg. The clinical trial protocol included taking tissue from her tumors and identifying the mutations. She had 62 genetic abnormalities in her tissue from her tumor. Of that only four were potential avenues to attack the tumor. The immune system uses white blood cells to fight off bacteria and foreign substances, but with cancer it is not enough.  A “living drug” is made from the patient’s own cells. Scientists screen the white blood cells and extract the cells that can attack the cancer. They then grow these cells in huge quantities in the lab. Along with drugs that will take the brakes off the immune system, and the patient’s own treated cells are infused back into the patient. This procedure took place two and a half years ago.  Almost immediately she started to feel better. Her scans showed her tumors shrinking and disappearing. Now she has been cancer free since the procedure. She is living her life and feeling well. She is the first known patient cured with metastatic breast cancer. In this clinical trial the response rate is 15%. That translates into 7 patients out of 45 survived. The clinical trial included patients with advanced colon cancer, liver cancer and cervical cancer.

Scientists do not know why this woman from Florida with metastatic breast cancer had such a positive, lifesaving response. To find out more much larger clinical trials need to be conducted.

Immunotherapy is a new exciting world of treatment for many cancers. The ways that immunotherapy works for different cancers are still being discovered. The basis of immunotherapy working is to use the person’s own immune system to work harder or smarter to attack cancer cells, or to give your immune system additional man-made substances such as proteins.

For malignant mesothelioma patients this is a positive, exciting report. Once again, every person’s tumors are different, and scientists are finding the keys to unlocking what will work for certain tumor types. A response rate of 15% is a place to start working on why some patients and some tumors respond and some do not.

Joining a clinical trial not only saved this women’s life, it cured her cancer. No one can promise that anyone else will be cured but she has been!  Investigate clinical trials – you never know!

Staging Updates

Eleanor Ericson Mesothelioma NurseDiagnosing and staging of malignant pleural mesothelioma has always been a challenge. Malignant pleural mesothelioma is a rare disease but often, symptoms can mimic many more common diseases. Frequently, a patient’s symptoms can be present for months before a diagnosis is made.

After diagnosis, treatment can vary from patient to patient. Some patients are eligible for chemotherapy and supportive care while others with an earlier stage of the disease and better physical health might opt for aggressive multimodality regimes, including surgery, chemotherapy, and radiation. Currently at one major academic mesothelioma center, approximately 1/3 of the patients that are seen are candidates for surgery. That leaves the majority of patients with non-surgical options.

How is the decision made? And what does staging of mesothelioma do for patient options? These recommendations are made based on a staging system called TNM. T is for tumor and its size, N stands for nodes, and M for metastasis when lesions are found in other parts of the body. This staging is done to see what the prognosis might be, and for helping to decide what type of treatment the patient with the tumor might be eligible for. This staging is based on the tumor size, location, and what the scientists see under the microscope.

As part of the workup for diagnosing malignant pleural mesothelioma different tests are performed. One of the most common test is the CT scan. The CT can show valuable information particularly in the early diagnosis time to see if the tumor is resectable. The CT scan can show if the disease is limited to one lung, distant metastasis or whether there is involvement of the chest wall or involvement of the abdomen.

Some researchers have taken this information and investigated how the volume of the tumor can predict outcome and treatment. From the CT scans they assess the three- dimensional reconstruction of the tumor. This has helped researchers in the prognosis of overall survival. The second measurement that could potentially help with patient prognosis is the thickness of the disease in the fissures in between the lobes of the lung. Since everyone’ tumor is different this is a difficult staging system to implent due to the variability in the disease and the expertise of the radiologist interpreting it.

One of the researchers that is working on this staging system to help patients on what type of treatment is best for their particular stage of the disease is a Dr. Ritu Gill, a radiologist. Studying CT results of malignant pleural mesothelioma patients can give more precise options to the patients and aid in further research. Measuring malignant pleural mesothelioma is not straight forward because the pattern of MPM is irregular and inconsistent.

While the information from CT scans can be challenging to interpret, clinical trials can test these unique measurements and try to make them even more precise. In practice these findings can be used to monitor patient’s response to ongoing treatment and all over for workups of thoracic malignancy. This work takes the results of the CT one step further.

Although more research is needed, this work will help patients and their mesothelioma team in deciding the best possible treatment for that particular patient’s MPM.

The Journey Can Be A Roller Coaster

Lisa Hyde-Barrett, RN Mesothelioma NurseThe journey with mesothelioma can be a roller coaster of highs and lows both physically and mentally. Many times, we hear families, loved ones, or caregivers say that the patient was not in the state he or she was in before their surgery occurred. It is important to know that as someone undergoes treatment for mesothelioma, so much happens physically and emotionally and change should be expected. The physical portion most people can easily understand, they can see the pain, the scar, the tubes coming out of different parts of the body.

The emotional part is more difficult to understand. This disease has forced the patient to face their own mortality. They are now reliant on people to help them with everyday skills, a task that can be a lot to take in. As you walked into the hospital, it is unfathomable to think that you are going to get out the way you came in. Not only are you dealing with major surgery, but now you have been robbed of your independence.

As you progress through your recovery and eventually home, the reality sets in that you have mesothelioma and the fight must begin. How are you going to move forward, get back to where you started? This time can be quite emotional, and if you have family or friends helping you this may be quite beneficial. I actually saw people recover independently at a rehab but that too can be a rough road. It can be done, but it seems as if that makes it more difficult not to have support to help.

As you sit day to day and mentally feel down, the recovery moves forward but it may not seem fast enough. A good idea could be to keep a journal of your activity, mood, physical appearance, and weight. Most people have smartphones that you can take a quick photo each week as you progress through your recovery. A scale is an easy device to monitor your weight and encourages you to eat healthy. Your activity can be easily monitored if you keep the same route. You can jot down when you go beyond your previous walks, or jot down how many flights of stairs you took that day. All this information can be helpful, but I suggest that it be reviewed once a week as checking day to day may seem too daunting. As you are tracking your progress, try to scale your overall mood for the day, maybe use a numerical scale that is from 1-10. One could be just a lousy mood, frustrated, pain, etc. and ten could be a mood of joy, gratitude, happiness, etcetera. All this information can be helpful when you are able to reflect that you are making progress while you may still experience feelings of frustration.

Recovery from mesothelioma can be difficult, long and hard. Try to surround yourself with positive people and don’t beat yourself up. Remember we all only have today and allow yourself a bad day now and again. When the good and great days come be happy, celebrate and share with others. The journey has begun and now you have a say of how it will move forward.

Memorial Day 2018

Eleanor Ericson Mesothelioma NurseThis past weekend the nation stopped to honor all that have died in service to our country. Memorial Day is an American holiday, by Federal law it is celebrated on the last Monday in May. Focusing on the reasons for this holiday and the men and women that it honors, it is important to remember how Memorial Day evolved and the history behind it. Originally it was a tradition started to honor the soldiers killed while fighting in the Civil War. It was called Decoration Day because people would decorate the graves of fallen servicemen as way of remembering and honoring their sacrifice for our country. Memorial Day became an official Federal holiday in 1971. This is a day of remembrance and giving thanks for those who have fought for our freedom. Parades are held and for many it is the unofficial start of summer.

War and the experiences in war can leave unseen scars that claim lives years later. Malignant mesothelioma is diagnosed every year in over 3,000 people each year in the United States. Of that amount approximately 1,000 are Veterans of the military, having served our country. Another way servicemen are affected after their service is over is by untreated mental health issues leading to suicide.

The longest foreign war this country has ever fought is still ongoing. In 2001 the war in Afghanistan started, it is now in its 18th year, with many military experts saying there is no end in sight. Many American soldiers have paid the ultimate price in this war. Many other servicemen have paid the ultimate price after leaving the war, dealing with the effects of war on their mental health.

This past week I attended a conference in which a Veteran gave a talk on his experience post military, in his search for mental health help. He is a service connected disabled Veteran who is advocating for fellow Veterans. He is a Veteran of 14 years of service. During his years in the military he had served 2 tours of duty in Afghanistan and Iraq, had multiple commendations for bravery and service. He is a service connected disabled Veteran with a diagnosis of post-traumatic stress syndrome. His wounds are not evident to look at him but are connected to his service. He has taken his experience with the Veterans Administration and become an advocate for his fellow servicemen. He has dedicated himself to helping other returning veterans so that their path back to health will be smoother than his. As he shared his story he related that in the past few years 15 of his fellow servicemen that he had served with had committed suicide. The suicides were all related to the long-term effects of their service. Some had received help, but most had not. He was advocating for improvements to the Veterans Administration access and availability for the returning service-member.

Some private organizations have recognized the need for ongoing emotional support for the Veteran and their families. One such organization that is dedicated to healing the invisible scars of war in Boston is called Home Base, started by the Boston Red Sox Foundation. Home Base is dedicated to ongoing counseling and support of Veterans and their families, regardless of their discharge status.

As we remember those who have given their lives for our country this Memorial Day 2018, remember the Veterans who are struggling with the invisible demons of their service.

Thank-You for your service.

It’s Okay to Talk About Dying from Mesothelioma

Lisa Hyde-Barrett, RN Mesothelioma NurseThe process of dying can be awkward, unpredictable and messy. We all like to have some control of our lives but this last final phase keeps us all on our toes. For many people this phase of life, is approached reluctantly with fear. To face dying, makes us face our own mortality and we begin to question ourselves, ideas and the world around us. For most of our lives we plan, we have goals, we take steps to reach those goals. For many this is an orderly process, and we take pride in accomplishing our goals. Dying is uncharted territory. We might have an idealized goal of a peaceful death surrounded by family at home, but the path to that goal is not one we have experience with.

As we prepare to care for people in the final stages of life we need to help them have peace with their decision. A personal choice of this magnitude cannot be dictated. Many people who come to terms with their disease often opt for comfort measures, in hopes that they will no longer be plagued by symptoms of the disease, multiple doctor’s appointments, medications and the side effects. This individual choice is what is right for that person on their own schedule.

The good news about coming to terms with ending aggressive treatment is that there is some rest and the energy that was spent on treatment, can now be focused on what the patient would want. Possibly it is just being home with loved ones, resting, have conversations at ease, and being with familiar surroundings. Patients don’t often come to a decision about ending treatment abruptly these are usually well thought out. When the body will not cooperate with your mind often this is the time that a mindset change.

Many time patients feel they are quitting, giving up, or their loved ones want them to pursue treatment for a little while longer. Whatever the reasons in the end patient and families want to know they did everything they possibly could. People do not want to be left behind thinking that there was one more thing they could have done that would have changed the results. It is hard not to think about ourselves, but the focus should remain on the patient offering peace and dignity, respecting their choice.

As we know there are no cure for Mesothelioma, but we continue to try every day. We are aware that 3000 patients are diagnosed a year and 2500 dies from asbestos related disease each year. Each of those people are unique with their own life experiences, influencing their decisions on treatments and dying. As the years progress we continue with more treatment options and are learning to treat symptoms of the disease better. In the end it reminds us of what asbestos can do and still continues to do. For the people who continue to bravely fight this disease, get involved with clinical trials, have surgery, chemotherapy, radiation, and all the other procedures you endure thank you. Without you the treatments would not be as advanced, and we know so much more today than we did 2 years ago. Someday this disease will hopefully have a cure and people will no longer suffer, and all deaths will be where the person wanted, and the way they wanted.

You Are Not A Number

Lisa Hyde-Barrett, RN Mesothelioma NurseAs people progress through their journey of Mesothelioma often they believe that they just become another patient or a number. From the beginning of their journey all they hear are numbers. There are 3000 cases of Mesothelioma diagnosed a year. Your odds of survival are x percent. There are so many numbers thrown around that no doubt people wonder how they even count as a person.

Well I disagree. As we visit Mesothelioma patients, we began to know them as individuals and develop relationships with them. These patients become part of our daily thought process. We worry for them, we worry about their mental health, their own thoughts and families. Over the last few weeks this has reminded me how much we and other medical professionals are emotionally invested.

As I sat today and spoke with a doctor how various patients, outlooks, patient families, and upcoming worries it reminded me of the continual thought process that is poured into each of these individuals. We used to hear from a physician who would say you may feel like you are sitting and waiting for something to happen, but please know that things are happening despite what you see or don’t see.

When you lay awake at night and cannot fall asleep know that someone is thinking of you as well. When one patient starts their medical journey, the emotional investment begins. The mental and physical investment begins as well, but so much is poured into each and every case.
To be honest with you we speak about patients and families as if they are our own families or loved ones. This is a long journey and we see you at the most vulnerable state and try to build upon that. I don’t know of any other disease that commands such an investment that the mesothelioma team gives to each patient. It really does not seem like it is just the nurse, but it encompasses everyone from the social worker, to the chaplain, to the oncologist, surgeon etc. to the staff who can run the hospitality house.

Mesothelioma can make you feel alone, isolated and fearful. Please know you are not just a number, you are a person who someone cares for, a medical team who is working diligently to improve your life, and above all you are a fighter. You were diagnosed with this disease, which was completely baffling to you and your loved ones but there are medical centers out there who care and want you to be better. Yes, we all know there is no cure but there are treatments, that can help provide relief from symptoms and extend your life. Know that you are not a number, you are a person who is important to many.

Talc, Abestos and Finding Answers

Eleanor Ericson Mesothelioma NurseWhen talking with patients diagnosed with malignant mesothelioma, there are a certain percentage of people that never know how they acquired the disease. There is no known asbestos exposure in their past that they can identify. For some it is a mystery that remained a mystery.

Recently we saw a pleural mesothelioma patient who has had a complicated post-op course. She is currently in rehab and looks fabulous! She is recovering and regaining her strength. She has not been able to link any risk factors to mesothelioma. Her job has not been in one of the known occupations that increase the risk of mesothelioma. She has been a long-term user of talc and powders that contain talc. Could this have been her exposure that led to her developing malignant mesothelioma?

Recent attention in the news has now linked the use of talc to the development of mesothelioma and ovarian cancer.

Talc is a naturally occurring mineral, it is known as the softest mineral. One of the reasons for this is that it can absorb moisture and be crushed to a powder that is used in “talcum powder.” Another form of talc is soapstone. Soapstone is used to make sculptures, bowls, countertops and many other objects. These are the two forms that most people think of when they think of talc usage. Talc usage is in many products and used as a filter in many. The most common use of talc in the United States is in the manufacturing of plastics, accounting for around 26% of total talc use. Approximately 17% of talc consumption is used as a filler in ceramic products such as bathroom fixtures. Talc is used in a variety of products including paint, paper, cosmetics, antiperspirants. It is also used in roofing materials to improve the resistance to the weather. It is also used as a carrier for insecticides and fungicides it can be blown through a nozzle and sticks to the leaves and stems of plants.

Talc is also commonly found in baby powder and in cosmetics. Talc is also used in rice and chewing gum and in some tablets. It is used to absorb moisture, prevent caking, or to improve the feel of a product.

Cosmetic products and the ingredients that are in them, do not have to undergo FDA approval before they go on the market. The cosmetic company is responsible for the safety and labeling of their products and for the ingredients in them. Under the Federal Food, Drug and Cosmetic Act the companies are not required to share their safety information with the FDA.

What is talc? Talc is a naturally occurring mineral. The ingredients that make up talc are magnesium, silicon, oxygen and hydrogen. Talc is mined in the United States from an open pit. Most of the talc deposits in the United States are in metamorphic rocks on the eastern side of the Appalachian Mountains or in Washington, Idaho, Montana, California, Nevada, and New Mexico and Texas. China leads the world in production of talc.

Asbestos is also a naturally occurring mineral. Talc and asbestos occur naturally and are often intertwined in the ground. Since asbestos is a known carcinogen, and since asbestos is known to be present in talc deposition, this issue of asbestos and talc has been studied for many decades. However, it is only recently that the issue of asbestos and talc has received media attention through a number of legal cases. There have also been recent legal cases involving talc and ovarian cancer that have given attention to this issue as well.

This connection of the use of talc and the development of mesothelioma can possibly be the answer for some patients who have already been diagnosed with malignant mesothelioma. For those who have had no answer to the development of their disease, the issues that have come out about asbestos in talc could help in answering these lingering questions.

Why You Should Use Corn Starch and Not Talc

talc asbestosThe link between asbestos in talcum powder (talc) and mesothelioma has taken center-stage recently with several large jury verdicts leveled against the leading manufacturer Johnson & Johnson Consumer, Inc. (Johnson & Johnson). The company has been sued in thousands of claims alleging that its baby powder causes ovarian cancer. But cases involving mesothelioma are based on the presence of asbestos in Johnson’s Baby Powder and Shower-to-Shower talc products, which is breathed in by those using or exposed to the products. It is important that consumers understand that the corn-starch version of Johnson’s Baby Powder is 100% asbestos-free, whereas the talc-based classic Johnson’s baby powder formulation has been found to contain asbestos.

The Connection Between Talc and Asbestos

Talc is a naturally occurring mineral known for its moisture absorbing properties. Talc is found in close proximity to asbestos when growing in its natural state. Exposure to asbestos is the only well-established cause of mesothelioma in the United States. Consumer companies must refine talc before use, but studies reveal that many products, including baby powder, still contain small percentages by weight of asbestos. Cornstarch, however, can be safely used as an alternative to talc. Cornstarch is made of large particles located in the corn kernel and is completely free of asbestos. Many consumer product companies have acknowledged the benefits of using cornstarch and have increasingly used cornstarch in place of talc. Johnson & Johnson, however, continues to market two versions of baby powder: one with corn-starch and the classic, more-recognizable version with talc. Clearly, talc should not be used in any baby powder or body powder because of the findings of asbestos in talc, and because a 100% asbestos-free alternative exists in the form of corn starch. Studies also demonstrate an increased risk of ovarian cancer in women who use talcum powder regularly below the waist.

Historic Verdict Links Mesothelioma to Talc in Baby Powder Products

In a major victory for mesothelioma patients in April, 2018, a court in New Jersey concluded that the talc found in Johnson & Johnson’s baby powder was contaminated with asbestos in the mining process. Plaintiff Stephen Lanzo, represented by two MesoLawyersCare law firms, maintained that he developed mesothelioma as a result of using baby powder for decades. Internal Johnson & Johnson documents revealed that the company was aware that the talc in its baby powder contained asbestos yet failed to provide warnings on its packaging alerting consumers about the dangers. This knowledge dates back prior to the 1970’s according to company documents. The jurors awarded $30 million to Lanzo and $7 million to his wife and an additional $80 million in punitive damages to be paid by Johnson & Johnson and Imerys Talc America, Inc, a talc supplier.

Mesothelioma Litigation Against Talc-Based Product Manufacturers

Unlike asbestos lawsuits that often arise from occupationally-related asbestos exposures, the plaintiff in the Lanzo case was exposed to asbestos that contained in talcum powder. Evidence that asbestos was present in talc came from historical documents and testing, as well as modern-day testing of vintage products. Asbestos was found in the majority of Johnson’s baby powder products tested by the expert for the plaintiffs in the Lanzo case. Johnson & Johnson vigorously objected to the admission of this testing in the Lanzo case, but the trial court overruled its objections. Johnson & Johnson still claims, despite all this testing, that its talcum powder products never contained any asbestos. Johnson & Johnson also claims that any asbestos minerals in its talc-based powder do not meet certain geological definitions for “asbestos fibers”. However, the jury in Lanzo rejected these arguments and concluded that Johnson & Johnson’s baby powder was a defective product because it contained asbestos, that the product was unreasonably dangerous and that cornstarch is a safer feasible alternative.

The outcome of the case is significant because it is the first time Johnson & Johnson has been held liable in a mesothelioma case in connection with the presence of asbestos in its baby powder. Despite the company’s continued claims that their baby powder poses no health hazards, the verdict is further evidence why consumers should use corn starch instead of talc.

If you or a loved one has been diagnosed with mesothelioma, contact MesoLawyersCare to learn how we can help you obtain the compensation you deserve. We have recovered some of the largest and most notable verdicts in mesothelioma cases in the country. Call us at 1-888-568-1177 or complete the form on this page to speak to our attorneys about your case.

Keytruda

Eleanor Ericson Mesothelioma NurseThis past week encouraging news came out regarding Merck pharmaceutical drug Keytruda and patients with previously untreated advanced non-small cell lung cancer. Keytruda is a drug that harnesses the immune system to attack tumors. It is an immunotherapy drug that works by targeting a protein called PD-1- programmed death receptors. It is thought that the cancer cells do not allow the white cells to attack and kill the cancer cells as they normally would do with other foreign invading toxins. The clinical trial that the news came from was presented by Dr. Leena Gandhi of New York University, Perlmutter Cancer Center and reported at the American Association for Cancer Research meeting in Chicago. The study showed that Keytruda was useful when added to the standard chemotherapy for non-small cell lung cancer, which is the type of lung cancer most commonly found in people that smoke. By adding Keytruda the one-year survival rate increased from 49% to 69% as compared to the group who received the standard chemotherapy only.

Keytruda whose generic name is Pembrolizumab, has been used to treat many different types of cancer. It has been used with some degree of success in patients with melanoma, Hodgkin’s lymphoma, cancer of the stomach, head, neck, and bladder. The total sales for the treatment with Keytruda was a total of 3.8 billion, with an average cost of $150,000 per year, per patient.  Keytruda is administered intravenously. The common side effects are nausea, anemia and fatigue. The standard chemotherapy treatment used in the study and for non-small cell lung cancer is pemextred and carboplatin in the control group with Keytruda in the other group.

The only approved chemotherapy treatment in the United States is pemextred and cisplatin.  Scientists are excited about the possibilities that immunological drugs can offer to patients with a variety of cancers. It is not a one size fit all approach. All the additions and timing of when to administer the chemotherapy with or without the immunological drugs has to be studied through clinical trials that are carefully regulated.

For patients with malignant mesothelioma the number of patients is small. With approximately 2,500 to 3,000 patients a year diagnosed with malignant mesothelioma in the United States per year, the challenge is to encourage enrollment in clinical trials that patients may qualify for. Other immunological drugs are also showing promising results with malignant mesothelioma.

The timing of treatment is critical. Diagnosis with malignant mesothelioma can sometimes take time due to the rarity of the disease, and most symptoms mimic other more common diseases. The importance of knowing what clinical trials that the patient with malignant mesothelioma may be eligible for is how progress to a cure is going to happen.

Currently there are 13 studies listed on www.clinicaltrials.gov that are studying Keytruda/ Pembrolizumab and malignant mesothelioma. Of that 13, 2 are not actively recruiting patients, 10 are recruiting, and one has been withdrawn.

Progress is exciting! Encouraging continued participation in clinical trials is the way forward both scientifically and economically.

Investigate the possibilities, www.clinicaltrials.gov

Comfort Care

Lisa Hyde-Barrett, RN Mesothelioma NurseWhen it was announced on Sunday April 15th that Barbara Bush, the wife of one President and the mother of another, would be receiving comfort care, there was confusion as to what that meant. Comfort care refers to focusing on the symptoms of a disease and not focusing on curing the disease at the end of life. Hospice and palliative care are forms of comfort care. Comfort care is about maintaining dignity and managing patient’s symptom and maximizing the quality of the time that a person has left. The goal is care and not a cure of the underlying disease. There is a shift from fighting the disease to fighting the symptoms, the pain, and shortness of breath or whatever the symptoms may be.

The decision to change the focus of care is a personal one. Mrs. Bush chose to stop trips to the hospital for further aggressive treatment. Her choice and the choice of any patient who choses comfort care at the end of life, does not mean the patient is not cared for. We are all mortal, we all have a limited time on this earth. Although we know this in our head most of us avoid talking and dealing with this inevitable conclusion to our time on earth. Mrs. Bush announcement included a quote, “Life has been good and while more would be great this is enough.”

By opening up the conversation regarding care at the end of life it brings attention to a topic that most people are not comfortable with, our own mortality. April 16th, 2018 had been declared National Healthcare Decision Day. Medicare has a Voluntary Advance Care Planning benefit for people to make important decisions that give them control over the type of care they receive at end of life, and when they receive it. There are organizations that are trying to bring the importance of thinking about end of life issues and what our wishes are, to the forefront. The Conversation Project, End of Life Resources for Patients and Families, www.caregiver.org, www.nia.nih.gov, are all resources that can be used to start the conversation.

The choice is a one that not all family members arrive at or understand in the same time frame. Some patients look upon this decision as empowering. There is also some confusion as some patients and family members look upon this as “giving up.”

For many patients with malignant mesothelioma the end of the journey may come after months or years of dealing with disabling symptoms, along with having some quality time. It is very important that you speak to your medical team and make your wishes known.

Thank you, Barbara Bush for sharing so much of your private life and most intimate wishes.
Because of you this will give the power and courage to help people guide themselves through the pathway to the end of life. Hopefully the door has been opening to change the culture to openly talk about what matters most to all of us at end of life and share it with our loved ones.

MLC Law Firms Win $117 Million Mesothelioma Verdict Against J&J

Johnson & Johnson Baby Powder Talc Mesothelioma Verdict for Stephen Lanzo

Pictured: MesoLawyersCare attorneys Joseph Satterley (left), Moshe Maimon (middle) and Denyse Clancy (right) after this historic verdict.

April 11, 2018 – Two of the MesoLawyersCare law firms, working together for our deserving mesothelioma client, won a historic victory today in New Jersey state court against Johnson & Johnson Consumer, Inc. (“J&J”), and Imerys Talc America, Inc. (“Imerys”), a supplier of the talc. The jury unanimously found that Steve Lanzo’s mesothelioma was caused by exposure to asbestos in Johnson’s talc baby powder and Shower to Shower products. The trial proceeded in two phases: the liability and punitive damages phase. Last week, after a three-month trial, the jury awarded $37 million dollars to compensate Steve and Kendra Lanzo for their damages resulting from Mr. Lanzo’s mesothelioma. Today, the jury awarded an additional $80 million dollars in punitive damages, consisting of $55 million against J&J and $25 million against Imerys.

Both J&J and Imerys continue to claim that their talc never contained asbestos. However, the jury rejected this argument, unanimously finding that Mr. Lanzo breathed in asbestos from his use of J&J’s talc powders. In its verdict, the jury also decided unanimously that both defendants failed to adequately warn about the health hazards of asbestos in their talc. The jury was also asked to decide whether Johnson’s Baby Powder and Shower-to-Shower were “defective” products as the result of being unreasonably dangerous. The jurors all agreed that the products were defective because it contained asbestos and J&J had a safer feasible alternative design (corn starch) that they could have sold instead of its talcum powder. The MesoLawyerCare attorneys devoted themselves to the Lanzo family and this cause in order to win this important victory. The team of MesoLawyersCare attorneys presented a large number of previously confidential corporate documents regarding asbestos in talc for the jurors to view and consider in deciding the case.

This trial was the first mesothelioma case in which J&J has been held responsible for asbestos in its baby powder talc products. There have been previous verdicts against J&J in ovarian cancer cases, but those cases have not centered around the presence of asbestos in the talc and did not involve mesothelioma. The documents unsealed in court, which came from the defendants’ confidential files, dated back to the 1960s and 1970s. These documents showed that the companies knew that there was asbestos in the talc used in Johnson’s Baby Powder, but failed to provide any warnings to customers about this severe hazard. The jury was also shown documents showing that J&J could have replaced its talc baby powder with a safer alternative (corn starch) but failed to do so because of marketing and litigation concerns. One of the documents from 1977, indicated that J&J had done market testing showing that most customers preferred corn starch baby powder (a substance that is 100% asbestos-free).

The United States government has never regulated cosmetic talc powder products. The companies instead “self-regulated” and opted to primarily use a test method that they knew lacked the sensitivity needed to identify asbestos in talc. In the 1990s and 2000s, additional testing and correspondence put J&J on notice that there was asbestos in Johnson’s Baby Powder. One of these reports, from the 1990s, was a published article that identified a talc sample as “Sample I” that contained asbestos fibers. It was not until litigation with J&J in 2017, that it was revealed that J&J had documentation that “Sample I” (which contained asbestos) was Johnson’s Baby Powder, purchased off-the-shelf in the 1990s.

Evidence was introduced at trial showing that, in 2008, Imerys’ head of product stewardship made a monopoly board called “License to Market” for selling talc. On this monopoly board, a skull and cross bones and “DANGER” were placed next to squares marked “Public perception” and “Litigation”.

At the punitive damages phase of this trial, Imerys’ Chief Financial Officer testified that Imerys Talc America’s Board of Directors had not discussed making any changes as a result of the jury’s finding that there was asbestos in the company’s talc. J&J did not have a corporate representative testify during the punitive damages phase of the verdict.

The dedicated lawyers and staff from all the MesoLawyersCare law firms are proud to announce this important verdict for the Lanzo family. We are also hopeful that our victory in this case will help others diagnosed with mesothelioma resulting from exposure to asbestos from dangerous talcum powder products, and that these companies will stop using talc in baby powder and body powder products.

If you or a loved one has been diagnosed with mesothelioma, please contact us so that we can see if MesoLawyersCare can help you. Our firms have collectively recovered over $10 billion dollars for victims of mesothelioma and other asbestos-related diseases. As this verdict shows, we are willing to take on powerful corporations to get our clients the justice they deserve. You can contact us today by calling the phone number on this page, typing into the “live chat” with one of our representatives now, or filling out the form on this page.

Dignity

Lisa Hyde-Barrett, RN Mesothelioma Nurse“All human beings are born free and equal in dignity and rights.” In 1948, after World War Two this declaration with the Universal Declaration of Human Rights, it is thought of as the beginning of the modern-day human rights movement.

Dignity is the one thing we all value and take for granted. We just assume we are going to function independently and our goals will be met. Diseases like Mesothelioma try to rob individuals of their dignity. It is hard as a loved one to witness a person struggle and not jump in and take over. I have watched an individual over the last few months become plagued by the disease and continue to maintain his independence and dignity. From an outsider’s viewpoint everything seems to be such a struggle and it is heartbreaking to watch. We recently had a conversation about some of his activities that he does independently. As he explained to me, the physical symptoms are the hardest. Shortness of breath is one and the fluid has made his mobility almost impossible. There are a few activities that he still enjoys and feels he can still do. As he continues to control his medical journey independently he has learned to ask for help when needed. The activities that he performs independently he hangs onto and is unwilling to give up despite the thoughts of others. Perhaps his family or friends could do it quicker or better, but he still can do it. We must respect what people can do despite how it appears on the outside. We all need to know we can perform somethings independently.

As we watch so many people battle with their illnesses we realize all we really can do is support them. Sometimes just watching can be the hardest but possibly the most important. Often, we can be guilty thinking “if that was me I would do this.”. Truth be told I believe no one really knows what they would do. For this individual he continues to fight despite what others think he should do. The one thing Mesothelioma has not stolen is his power to make decisions about how he will travel through his journey. Choices are freedom and he continue to make these for himself.

This has to be one of the hardest parts of watching someone deal with Mesothelioma, how it steals someone’s self- worth. How do we help someone preserve this component that makes us all individuals? Being able to care for ourselves independently gives us self-worth. For this person the mere task of dressing, putting on shoes, still provides self-worth. It would be easier for a loved one to step in and do some or all of it, and sure would be quicker, but we must allow a person to continue to provide himself with the simple tasks of caring for himself. No doubt the fight and will are still there so we must support these people. Taking over for a loved one who is having difficulty with anything can dash their hopes and dreams. If we don’t allow patients to try, then what have we left them with.

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