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Mesothelioma Nurses

Tool Box – Making Life Easier

Lisa Hyde-Barrett, RN Mesothelioma NurseWhen you want to fix something, whether you’re a master craftsman or a Do-It-Yourselfer, you rely on your tools. What does a person diagnosed with malignant mesothelioma need in their tool box?

If we put together a tool box for patients arriving at a Mesothelioma Center, we would put in some simple things that could make a huge difference in the journey.

We would start with a scale, so you could weigh yourself daily. Something as simple as weight can tell a mesothelioma team if the patient is consuming enough calories, or if they are retaining fluid. When recovering from mesothelioma treatments, it important to weigh yourself at the same time every day. You would be surprised at just how much a fluctuation in weight could tell a healthcare professional. Often, a patient feels short of breath, only to discover their weight increased 2-3 pounds overnight. Shortness of breath often precedes weight gain, but the scale could confirm your fluid retention.

Another item we would include is a pill box. We have all seen them and they can be useful if you are taking more medications than usual and feel overwhelmed. You or a family member can set it up for a week or two, which allows for fewer errors. Patients who use pill boxes often feel more in control and confident about when they are taking their new medications. Some local pharmacies may even help with this task; you will just have to check with your individual store.

We would also add a journal for writing about your feelings and experiences along your journey. This can be a great device to reflect upon where you have been and how you have changed, both physically and mentally. When you have moments of doubt in your treatments, your journal can show you how much progress you have made. Taking care of your mental and physical health during this period is critical. Many people feel anxious or overwhelmed by thoughts that plague them since being diagnosed with mesothelioma. A journal can help act as an outlet for these worries and fears, and it can be therapeutic for many people with malignant mesothelioma to let go of some of these feelings. A journal can track how much you exercise. It is good to walk outside for 20 minutes, go to physical therapy, participate in a meditation course, or clean your house for an hour. Physical activity can make a world of difference in helping us feel strong and in control.

If there was only one more thing we could include, it would be a water bottle to measure the amount of fluids that you drink. When coping with mesothelioma, many people lose their desire to drink fluids. Measuring your intake can keep you on track about staying hydrated. Regularly drinking fluids can help you fight off dehydration and dizziness, avoid drops in blood pressure, and help you feel better overall. Using a bottle with simple markings can help you stay on your game and keep yourself well hydrated.

None of these tools have to be elaborate or high-grade medical equipment; in fact, most are already somewhere in our houses. The core idea of your tool box is to help you have equipment at your disposal to make life easier.

Gathering Information

Eleanor Ericson Mesothelioma NurseAt a recent meeting with patients diagnosed with malignant mesothelioma, as usual, we exchanged a lot of information. Some patients shared their experiences about surgery; other patients shared their thoughts and feelings about scans, chemotherapy and radiation therapy. We shared thoughts about why sometimes surgery is recommended over chemotherapy or vice versa. Everyone discussed their concerns and questions about the treatments.

Information comes at us from multiple sources. We can get information instantly these days from the internet. It is estimated that approximately 1/3 of Americans look online for medical information – like this blog. Reading about mesothelioma online can be very scary and concerning. Knowing the source of your information and the context of the statistics and information is very important. While we share this information with you, it is extremely important to speak with your medical providers about your health.

For patients diagnosed with malignant mesothelioma, treatment needs to happen at the right time, at the right stage of the disease and the person must be physically able and mentally willing to undergo treatment. This information can only be evaluated with a medical expert in mesothelioma. Treatment for malignant mesothelioma is decided on a case by case basis.

Reading the latest statistics can be interesting, but do they apply to you? It is estimated that at least one-third of people living in the United States use symptom checkers for routine and urgent medical conditions. Since many of the initial symptoms of malignant mesothelioma are the same as more common conditions, you could be worrying yourself unnecessarily. While you may be experiencing symptoms that concern you, it is best to discuss these with your doctor, as these online tools are not appropriate to diagnose a medical condition.

Search engines can be very helpful in obtaining information, but they should only be a part of making your decision regarding your health care. Please remember to discuss the information you find on the internet with your healthcare professionals.

Sleep Help

Eleanor Ericson Mesothelioma NurseOur recent blog on sleep deprivation and sleep deficiency explained what the terms mean and how important sleep is to good health. When you or your loved one is managing with a diagnosis like mesothelioma, it is not unusual to suffer from lack of sleep. Now that you have identified this problem, how can you help solve it?

Sleep hygiene is a defined as “a variety of different practices and habits that are necessary to have good nighttime sleep quality and full daytime alertness” (www.sleepfoundation.org).

Sleep should be a priority for everybody, but especially so for people being treated for mesothelioma. Getting a restful night of sleep can be challenging. It is estimated that up to 59% of all cancer patients suffer from insomnia. Some of the possible causes of sleep deficiencies with a cancer diagnosis can be stress, pain, side effects from the cancer treatments, new medications that are interfering with sleep, or possibly the cancer itself.

How do you improve your sleep hygiene during the stress of managing a mesothelioma diagnosis? Let’s begin with how your routine affects the quality of your sleep. Once you determine how much sleep you function best with, make it your goal to get that amount. The average adult requires 7 to 9 hours a night for their best performance. One way to achieve this is to limit daytime naps to no more than 30 minutes. Also helpful is exercising during the day – it can be as simple as walking and getting outside for at least 20 minutes. Try not to drink caffeine or eat rich or spicy foods close to bedtime. Too much alcohol can also interfere with sleep – although you might get to sleep faster, staying asleep can be an issue. Make sure that your bedroom is comfortable – a cooler temperature is better for restful sleep. Finally, try and make the time you go to bed each night routine, so your body understands when it is time to fall asleep. Above all, make sure you are always reaching out to your loved ones and your caretakers throughout this ordeal, and relieve some of the burdens and worries that are inhibiting your sleep.

It is important to keep your mesothelioma team in the loop of how you are sleeping. Sleep is as important as exercise, medication, and nutrition when dealing with any cancer diagnosis, and your nurses and doctors need to be aware of anything that might be impacting your fight. Your mesothelioma team can even guide you to sleeping resources as well – the counselors on site at a mesothelioma center can benefit patients by helping them practice healthy sleeping techniques. There are ways and resources to help you get restful sleep. It begins with recognizing how important a role sleep plays in your health.

Get a good night of restful sleep, or make changes and talk to someone to help you achieve this goal. It is a priority!

What Does the Super Bowl Have to do With Mesothelioma?

Eleanor Ericson Mesothelioma NurseOn Sunday February 3, 2019, an estimated 100 million people will watch the Super Bowl.  Some are fans, some are watching for the commercials or half-time show, and others are just watching to be sociable at a party or gathering. The Super Bowl is a game between one team from the American Football Conference and one team from the National Football Conference that have won the honor through a playoff system to go to the Super Bowl. Fans and players alike have superstitions they think can influence the game results. For the teams involved, it is an accomplishment just to have the opportunity to make it to the game.

Football is a team sport. At first glance, it may just seem like one team tackling the other team. It is, however, an intricate game with strategies and assignments for everyone under every possible variable. It has plays, schemes and strategies. It is practiced, studied, analyzed and dissected. It has been called a game of inches. Anyone that has played can also tell you it is hard physically and mentally.

What does the Super Bowl have to do with malignant mesothelioma?

Treating your mesothelioma may be looked at as a team sport, with your teammates fighting for you. Fighting any disease is best done with a team at your side. Mesothelioma Centers support you and your caregivers with experienced teams that include doctors, nurses and social workers. Your doctor is your Head Coach and will guide you through this journey. You may think of your friends and family as your teammates and fans. Just like football teams, your team is unique and special, making plays based on your needs.

Remember, your team is there for you and will help as you need it. You are not alone. Your team will make adjustments for you and switch plays when needed. Your team will learn along the way and get better and better at fighting for you.

P.S.  GO PATS!!!!

2019 Resolutions

Eleanor Ericson Mesothelioma NurseAs the New Year begins, we often look upon this time to make a positive change in our lives. For patients and families dealing with a diagnosis of malignant mesothelioma and any other life-threatening diagnosis this time of year can be difficult. Often patients and families would be happy to make New Year’s resolutions like the ones they might have done in the past but this year they do not seem important or meaningful.

New Year’s Resolutions are usually made to accomplish something that we have been putting off, or to make a positive change in our lives. According to a poll on YouGov.com, the top three resolutions are to eat healthier, get more exercise, and save money. Unfortunately, up to 80% of people surveyed drop their resolutions by the middle of February.

As we approach the end of January perhaps we should shift our resolutions from the top three to promoting good health for ourselves and our families. When a patient is diagnosed with malignant mesothelioma it impacts the entire family. Navigating through the medical system might be extremely difficult and stressful. Our resolutions could include taking care of ourselves and staying positive.

According to Family Caregiver Alliance National Center a caregiving web site, Caregiver.org, the mental and emotional effects on the caregiver have been measured and the statistics are impressive: 40-70% of family caregivers have clinically significant symptoms of depression. 17% of caregivers feel their health in general has gotten worse as a result of their caregiving responsibilities. The toll chronic stress can take on the human body can include a weaken immune system.

How can you manage stress during this very stressful time? For many this is the most stressful time of their lives. Regardless if you are the patient or the caregiver – take care of yourself. Simple things can make a difference. We all know most of these strategies and they can be started at any point to help you relax. Eat well. A healthy diet will give you more energy and be better able to cope with the ups and downs of this journey. Get enough rest, exercise regularly, take a walk outside, do things you enjoy. Take care of yourself, join a support group or take the time to write down your feelings and experiences in a journal. Do what works for you.

We all have our own strengths and weaknesses, likes and dislikes, styles of communication, not one size fits all. Whatever works for you and your loved ones is the right way for you. Make a resolution to take care of yourself for the entire year!

Mesothelioma is a “Rare Disease”

Lisa Hyde-Barrett, RN Mesothelioma NurseA rare disease, by definition, must affect only a small percentage of the population.  In the United States a rare disease is defined as a disease that affects fewer than 200,000 people in the country. Worldwide, there are over 6,000 rare diseases that affect over 300 million people. Each disease is unique in its effects and treatment, and due to the rare nature of these diseases, they often lack the same resources and treatment options as more common health problems. People suffering from rare diseases, along with their caretakers, often have difficulty finding experienced doctors. Often it requires multiple appointments and experimental medications to determine a health care path. Managing a rare disease can be physically, emotionally, and financially challenging. It is extremely stressful without support systems of others who suffer from the disease.

Every year there is a specific day that is set aside to recognize these diseases, usually the last day of February each year. This year, it will be February 28, 2019. This year’s theme is “Bridging Health and Social Care”. What exactly does this mean?  It is focusing on the challenges of coordinating care between the medical field and social and support services. If you have been fortunate enough not to be affected by one of these diseases, you would be astounded by the amount of time and energy that a patient or a caregiver expend daily to fight their “rare disease.”

Mesothelioma falls under the “rare disease” category. Approximately 3,000 people are diagnosed with this disease annually. While there are many treatment options available at Mesothelioma Centers and larger health centers, these facilities are not always easily accessible.

As patients and families struggle with this disease, we know there are options: there are numerous support services for this disease, as well as travel assistance programs which may be available to you. Every week, we see patients from all over the world come through our doors with hope. Many patients need to travel far and wide to arrive at the doorsteps of a Mesothelioma Center. However, by travelling to a major Mesothelioma Center, patients are giving themselves the best opportunity to fight this disease. The healthcare teams at Mesothelioma Centers understand travelling is not easy. Centers are usually set up with social and support services to help during these challenging times. Experience from treating others has taught us what helps. Although mesothelioma can be frightening as a “rare disease,” the medical community is making great strides to fight it. We are extending lives, and working towards a cure.

As you educate yourself about the options in front of you, know that many others have been in your shoes and followed this path. When feeling overwhelmed by it all, reach out to a Mesothelioma Center, ask questions, and become connected with our supportive and tight-knit community.

New Year – 2019

Eleanor Ericson Mesothelioma NurseAs we welcome 2019 and all the promise a new year might bring, we recognize the progress made in mesothelioma research in 2018. Progress often comes through a series of small steps, not headlines announcing an overnight cure. Each step brings us closer to a cure.
As we make our wishes for 2019, we pray for research that will cure mesothelioma. We hope you all know we are here to help guide you and we pray along with you for a cure. Researchers, Mesothelioma Programs, Mesothelioma centers, doctors and nurses are all working together towards the common goal of a cure.

As we look forward, we know that working together is so important. In January of 2018, an article was published in the Journal of Clinical Oncology. “Treatment of Malignant Pleural Mesothelioma: American Society of Clinical Oncology Clinical Practice Guideline” was written by a group of distinguished leaders in the mesothelioma community and demonstrates how working together will help us move forward. The article provides “evidence-based recommendations to practicing physicians and others on the management of pleural mesothelioma.”

We wish you all peace, love and health in 2019.

Our Caring Community

Eleanor Ericson Mesothelioma NurseWhen you or a loved one receives a diagnosis of malignant mesothelioma, you become part of our caring and very special community. We understand the struggles you face and are here to help. We know you do not want to be a part of this community. It is, however, a community through which you can connect, share stories and experiences, and feel strength and support behind you through the challenging times.

Many new members of our community have preconceived notions of what these experiences may entail. Being a member can help one find the answers to make a well-informed decision regarding their treatment and the goals of their care.

Treatment of malignant mesothelioma requires a team led by dedicated physicians and experts in the mesothelioma field. In our community, there is no substitution for experience.

Whether you are a patient, a nurse working in a treatment group, a researcher or physician treating the disease or a family member, what unifies the mesothelioma community is the common purpose to help each other. Our community is a safe place to support each other and remind ourselves we are not alone in this battle.

Belonging and connecting is how a community becomes stronger. Humor can also help to strengthen a community, regardless of its intent or purpose. There is a movement called the “pink socks tribe” started by Nick Adkins, a former health care executive. Adkins gives away pink socks with mustaches to facilitate connections with each other. When he gives away a pair of pink socks, he connects with the person, looks them in the eye and shares the moment. With his pairs of pink socks, Adkins is connecting and making someone smile, opening a connection, helping the person to enjoy some silliness and inviting them to tell their story.

The mesothelioma community is an active group that will continue to work together to strengthen our connections with each other and win the battle against mesothelioma. For any new members reading, welcome, and continue to reach out and share to strengthen the bonds.

Advocate – An Important Helping Hand

Lisa Hyde-Barrett, RN Mesothelioma NurseBeing an advocate is one of the most giving and selfless things you can do to help your loved one. From our years of experience, we have found advocates are critically important to both doctors and patients. It is wonderful when patients have a family member or friend who can take on this role. It is not an easy job and requires one to be on their toes and stay level-headed. It is very important that advocates understand their responsibilities and are ready for this position. Being an advocate often includes accompanying a loved one to medical appointments, monitoring medications, scheduling appointments, overseeing nutrition, planning exercise, and helping with overall well being.

There is no rule for who steps up to be an advocate. It is often a patient’s significant other, but can be their child, relative, neighbor or very close friend. While you might find classes and information on advocacy, most of learning how to be an advocate happens on the job. It can be very difficult to suddenly become the person who needs to remind their loved one to eat, drink, walk or take medicine. It helps when this is done with compassion and love.

As an advocate, it is very important that you communicate with the medical team and take the stress off of your loved one. Even scheduling appointments can be very difficult and emotionally stressful for a patient undergoing chemotherapy and battling mesothelioma. As an advocate, fight for your loved one calmly and with the strength that your loved one does not have at the moment. It is important that you be your loved one’s rock throughout this often stressful, confusing, and chaotic. Although your heart might be breaking, by remaining focused and calm you are performing an invaluable role. It is one of the most sincere and important things you can do for your loved one.

We have seen the truly inspiring relationships between patients and their advocates. Although this is a very difficult time, you can become very close, create cherished memories, and help your loved one feel comforted and loved.

Christmas Thoughts

Lisa Hyde-Barrett, RN Mesothelioma NurseThe holidays can be very difficult times for anyone, but these weeks are extremely difficult when loved ones are suffering with an illness. It is difficult, even impossible to focus on the traditional ideas of holidays, shopping, cooking and family time. As the holiday season approaches many people will be in the midst of treatment, away from home and not feeling well. Some of our loved ones are no longer with us.

I spoke with a physician last week about what really matters to our patients, and to everyone – time with people who we love. Most people who are not well or who have lost loved ones to illnesses mostly want time with people. If you are the relative or friend of someone who is suffering from Mesothelioma it would be a blessing to spend some time with them to brighten their day. It would also be a blessing to let a caregiver know that you care and support them. Most of us want to know that others think about us. Spending time together is the most valuable and memorable gift you can give someone. It is so important to visit people who are isolated because of illness. It means more than gifts. Even a friendly telephone call is a blessing. Young children stopping by to say hello bring energy, life and laughter. Time together simply cannot be measured.

As nurses we often visit with Mesothelioma patients and experience firsthand how grateful a patient is to receive a visit from a new or familiar face. We can only imagine the joy a loved one will bring to a patient. The visit will help you too. Many times, we visit patients and we comment on how much better we feel after we have seen a patient. The emotions and mood elevation one may gain from visiting a loved one or friend is very surprising.

Holidays are very difficult for those who have lost someone. Feelings and emotions are complex. The absence appears to be more pronounced around the holidays and causes heartache and feelings of sadness and loneliness. One of the things a loved one should focus on is what your deceased loved one would want for you. Most would want you to be happy, and to care for yourself, and surround yourself with other loved ones. There was a time when you spent most of your waking hours, with minimal sleep, tending to your loved one who needed you. With no regret you were glad to be the one who could do this and provide the needs and love that were required. Now it is the time to take care of you. That is what your loved one would want you to do.

Allow yourself time to heal, be with others and if you need emotional care allow someone to help you. This is a time to heal. Surround yourself with loved ones, eat healthy, exercise, start walking and regain your fitness. It is difficult to lose someone or care for someone but the best thing you can do for yourself is be kind to yourself. Think of the happiest of times with your loved one and surround yourself with people who will make you feel good.

Our blessings and best wishes to you all.

Happy Holidays!

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.

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.

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.

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.

Mindfulness

Eleanor Ericson Mesothelioma NurseBeing diagnosed with malignant mesothelioma is a life altering event. How does one handle and function when facing the voice in your head that cannot be turned off? A growing number of patients are finding relief in a way of thinking known as mindfulness.

One definition of mindfulness in Psychology Today is: “Mindfulness is a state of active, open attention on the present. When you’re mindful, you carefully observe your thoughts and feelings without judging them good or bad. Instead of letting your life pass you by, mindfulness means living in the moment and awakening to your current experience, rather than dwelling on the past or anticipating the future.”

Mindfulness is a way to “rewire the brain for the better.” This is not a new technique it has roots that go back thousands of years to Buddhism and Hinduism. The modern-day movement is thought to have started in the 1970’s. In 1975 the Insight Meditation Society was started by 3 people. Another leader is Jon Kabat-Zinn is credited with starting the conversation regarding the clinical effects of mindfulness. In the late 1970’s he founded the Center for Mindfulness in Medicine Health Care and Society at the University of Massachusetts Medical School in Worcester Ma. He currently is a Professor of Medicine Emeritus at UMASS. He developed a stress reduction and relaxation program called “Mindfulness- Based Stress Reduction” (MBSR), putting mindfulness in scientific context. His program is 8 weeks long, mindfulness-based stress reduction, and continues to be taught and practiced.

Mindfulness must be practiced. It is not something that clears your mind of all thoughts and concerns, it is not a way to relax. It takes time and practice to incorporate it into your life and get results. It helps both the mind and spirit. Meditation is a part of mindfulness.

There are classes available to learn about mindfulness. Cancer Centers, or Centers for Integrative Health Care, might have one available or be able to tell you were the nearest one is. There are classes available on line, books, apps, all different ways to learn about mindfulness.

One book, Mindfulness- Based Cancer Recovery, by Linda Carlson, includes research that shows mindfulness can lead to a 65% reduction in stress symptoms, has a measurable biological affect, slows the cells aging and maintained the shortening of telomeres. According to Carlson, “the goal is to focus on the events in your life as they are instead of ruminating about what could have been or what might still be.”

In a 2017 pilot study a researcher from the Mayo Clinic, Robert Benzo MD, found that people with lung cancer who practiced mindfulness before and after lung surgery, had fewer complications and better lung function.

A study published by Britta Holzel, a research fellow at Harvard and Giessen University in Germany, demonstrated that through meditation, the brain was able to create new gray matter. Practicing meditation can play an active part in increasing our quality of life, while helping reduce a number of symptoms.

People diagnosed with malignant mesothelioma and their loved ones are under enormous stress. Practicing mindfulness may be a way of letting go what you cannot change and become comfortable in the present moment.

Review Your Nutrition

Lisa Hyde-Barrett, RN Mesothelioma NurseThe role of nutrition before, during, and after a diagnosis of malignant mesothelioma or any cancer is being studied and the results are constantly evolving. The basic information is that your personal diet should fit your taste, contribute to a healthy lifestyle, and be affordable for you. Generally, it is recommended that your diet be low in salt, saturated fat and cholesterol, and high in fruits, vegetables, whole grains and healthy fats.

The National Cancer Institute has a division, Nutritional Science Research Group, in the Division of Cancer Prevention, whose purpose is to, “promote and support studies, establishing a comprehensive understanding of the precise role of diet and food components in modulating cancer risk and tumor cell behavior.” On Cancer.gov, there are results of studies that have been conducted and their connection with cancer.

Research has shown that you can reduce your chance of getting cancer or improve your chances of recovering from it by making conscious decisions about what you eat. We all have heard through the media many propositions for what someone should eliminate but one of the most promising diets is a plant-based one which eliminates meat, dairy and eggs. Back in 2012 there was an analysis of all the studies that concluded that vegetarians have significantly lower cancer rates. A study funded by the National Cancer Institute showed that vegans have lower rates of cancer than meat eaters and vegetarians. What is it that makes vegan and vegetarians less prone to cancer? When eating animal protein, the growth hormone called IGF-1 is increased. By performing studies that collect blood from meat-eaters, vegans, and vegetarians and placing it on human cells growing in a petri dishes, the results showed that those who ate more plant- based diets were found to suppress the growth of different types of cancer. Additionally, research has shown that being overweight can be a risk factor for cancer.

When you are diagnosed with malignant mesothelioma you may lack hope and doubt that a diet change is going to improve your outcome. Despite what the cancer will bring, you may feel better by just making some positive changes. Your whole diet does not have to change overnight but simple steps can improve your overall health and outlook. The American Cancer Research encourages us to eat a diet where our plates are filled with 2/3 of plant- based foods.

We know that Mesothelioma is not related to diet but the overall control of how you treat and fuel your body may feel empowering. Possibly you do not want to change your diet and you are satisfied with your nutritional status and that is fine. Although there is not one study that could provide all the answers, find what is right for you and give it a try.

There are a lot of healthy foods and vitamins widely available to all. Supplements can help a limited diet but, unfortunately one vitamin cannot take place of a food that would otherwise be full of it. Many times, vitamins work with other vitamins and not individually so that should be considered when making food choices. Remember it is quality over quantity; if you cannot get fresh vegetable, try the frozen version. Always remember something is better than nothing.

Sleep Week

Eleanor Ericson Mesothelioma NurseWhen dealing with a diagnosis of malignant mesothelioma it is vital to take the best possible care of yourself. One of the ways to do that is to get enough sleep. The amount of sleep that can provide you with optimal physical health, optimum immune function, mental health, and cognition, is what you need to obtain. This is often easier to say and to intellectually know but to achieve can be challenging.

Mesothelioma SleepSleep is a basic need of the body for physical and psychological well-being. The importance of sleep for best health cannot be underestimated. Sleep is something that has been undervalued by many of us. The amount of sleep we need varies with age. According to the National Sleep Foundation, adults age 18-64 should get between 7 and 9 hours of sleep a night. Age 65 years and older 7 to 8 hours are recommended. Infants and younger people require more sleep. Over time not sleeping, called short sleep deprivation, can lead to various health problems, including cardiovascular disease, obesity, and all-cause mortality. The immediate effects of not getting enough sleep are irritability, negativity, bad mood, inability to concentrate, short term memory loss, apathy, poor communication and questionable decision making.

Sleep and its effect on the human body is studied by sleep doctors. These specialized experts are called somnologist- from the word “somnus” meaning sleep. These physicians have additional training in the science of sleep medicine and are board certified by the American College of Sleep Medicine. The American Academy of Sleep Medicine, is dedicated to achieving optimum health through advancing the field of sleep medicine at the state and local levels.

There have been many studies conducted regarding sleep and its effects. In our culture often people admire someone who claims to get only 4 hours of sleep a night. In one study nearly 30% of adults in the United States reported that they sleep 6 or fewer hours a week.

Research has shown that long-term sleep disruptions may raise the risk of diagnosis of certain types of cancer. The findings that lack of sleep increases inflammation and disrupts normal immune function. Involved in the sleep cycle is a hormone called melatonin, which we produce with sleep, this hormone is thought to have antioxidant properties that help prevent cellular damage.

March 11-17 is Sleep Awareness Week. “Begin with Sleep” (#YourDayBeginsWithSleep), the focus of this week is to educate people about the importance of good sleep health for individuals to best achieve their personal, family, and professional goals. The week is sponsored by the National Sleep Foundation. The foundation is dedicated to improving health and well being through sleep education and advocacy.

Being diagnosed with cancer can lead to sleepless nights. In the middle of the night unable to sleep our darkest fears can seem to be reality. It is important when this happens that we realize that what we think at 4 a.m. is often shrouded in lack of sleep, and a negative hopeless frame of mind. It is important for all of us to take care of ourselves and get enough sleep for our physical and emotional well-being.

“The best bridge between despair and hope is getting a good night’s sleep.” – E. Joseph Cossman

Yoga – A Successful Treatment

Eleanor Ericson Mesothelioma NurseOne of the side effects that patients undergoing treatment for cancer often notice is fatigue. Doctors that study fatigue related to cancer treatment have found that the interventions that are prescribed fall into three categories. The first is treatment of a physiological problem like anemia, the second is drugs to stimulate the patient such as amphetamines. The third, and most successful is to suggest an exercise program such as yoga. Research is showing that yoga can help with pain and fatigue for patients undergoing cancer treatments. Used in conjunction with standard medical therapy, yoga is included as the third most popular complementary treatment used in the United States.

Yoga Cancer MesotheliomaYoga is an ancient practice of at least 5000 years, there are more than 100 different forms of yoga varying from fast paced to relaxing. The practice of yoga can help increase strength, endurance, and flexibility. Hatha is the form of yoga that most people think of when they think of yoga. The word Yoga is derived from the Sanskrit word “yuji,” meaning yoke or union. Yoga is an ancient practice that brings together mind and body. One of the premises being that mental and physical health are not just closely tied together they are equivalent. For many yoga is a low risk, high yield approach to improving overall health. Yoga has been described as a total mind -body workout that combines strengthening and stretching poses called asanas, with breathing exercises known as pranayama, and meditation or relaxing.

The past few years have shown an increase in the number of people who practice yoga. It is estimated that approximately 7.5% of U.S. adults have tried yoga at least once- nearly 4% in the previous year. A survey conducted by Yoga Alliance and The Yoga Journal, the results noted in an article in Forbes March 15,2016, stated yoga is being practiced by 37 million people in the United States up from 20 million, 3 years ago. Of that number 72% are women and 28% are men. The coasts of the United States are where yoga is most popular rather than in the middle of the country. One study identified some of the reasons people are trying yoga is 61% for flexibility, 56% stress relief, 49% general fitness, 49% overall health, 44% physical fitness, 86% experience a strong sense of mental clarity and 90% yoga is a form of meditation.

What are some of the effects of yoga on your health?

– Yoga can reduce the impact of exaggerated stress responses and may be helpful with both anxiety and depression.

– University of Utah study showed that people that have a poorly regulated response to stress are also more sensitive to pain.

– Techniques such as yoga, can help a person regulate their stress and pain responses.

– Can decrease the levels of cortisol, the primary stress hormone- helps lower levels of stress, anxiety, fatigue and depression

– Studies have shown that practicing yoga can lead to a decrease in symptoms of anxiety

– May reduce inflammatory markers in the body and help prevent pro-inflammatory diseases

– Could improve heart health- alone or with other therapies

– Improves quality of life

– Fights depression by decreasing symptoms of depression by influencing the production of stress hormones

– Reduce chronic pain increasers the secretion of melatonin a hormone that regulates sleep and wakefulness

– Improves balance and mobility in older adults

– Yoga may stimulate the vagus nerve and reduce migraine intensity and frequency- alone or with conventional therapy

– Mindful eating- yoga encourages mindfulness which may be used to help promote mindful eating and healthy eating habits

Yoga has many health benefits, is affordable, and open to people of all ages. It may help in your journey with mesothelioma.

Post-traumatic Stress Syndrome, PTSD

Eleanor Ericson Mesothelioma NursePost-traumatic stress syndrome, PTSD, is something that a lot of people associate with seeing or being involved in a traumatic event such as service in the military, it can also extend to being diagnosed with cancer. PTSD can develop at any age, and not everyone diagnosed with PTSD has been through a traumatic event. A friend or family member may experience a trauma, or a sudden unexpected death can lead a loved one to experience PTSD.

The United States National Library of Medicine defines post-traumatic stress syndrome as, “an anxiety disorder that develops in reaction to physical injury or severe mental or emotional distress, such as military combat, violent assault, natural disaster, or other life-threatening events.”

Often when a person is diagnosed with malignant mesothelioma it is after eliminating other more common diseases. This time can be an emotional roller coaster. For many it is mentally going from their usual excellent health to maybe a common condition like pneumonia, or an infection, to a diagnosis of a rare deadly cancer. The symptoms might have started as annoying, through the work up and elimination of other diseases it becomes a process that indicates a life altering diagnosis.

A recent article in the journal Cancer in November 2017, found that approximately one in five cancer patients reported symptoms of post-traumatic stress disorder within six months of diagnosis. After four years, about 6% of patients had PTSD.

In general PTSD affects approximately 3.5% or about 8 million, of the people in the United States. Not everyone that has experienced a traumatic event develops PTSD. Consisting of ongoing- chronic -or short term -acute- PTSD the symptoms can develop within one month of the traumatic event or years after. PTSD affects more women than men. Generally, the symptoms are divided into four different groups: intrusive memories, avoidance, negative changes in thinking and mood, changes in physical and emotional reactions. The diagnosis is made for adults they must have these symptoms for at least one month, at least one re-experiencing symptom. These symptoms can cause issues in everyday life. They can include flashbacks- reliving the traumatic event over and over and experiencing it physically. Avoidance symptoms which include staying away from places, events, or objects, that remind the person of the traumatic event and avoiding thoughts or feelings related to the traumatic event. The 3rd symptom includes arousal and reactivity symptoms that include being easily startled, feeling tense, difficulty sleeping, angry outbursts. These symptoms are constant, leaving the person angry and stresses and with difficulty doing activities of daily living. The fourth category of symptoms are cognition and mood symptoms which include trouble remembering key features of the traumatic event, negative thoughts, distorted feelings of guilt or blame and loss of interest in enjoyable activities. When symptoms last more than a month, interfere with your ability to function and cannot be attributed to other mental health issues, substance abuse, medical issues it might be PTSD.

Treatment for PTSD includes medications, commonly an anti-depressant and psychotherapy – talking with a competent mental health professional who is knowledgeable in PTSD. Talk therapy with a competent professional can last 6- 12 weeks but for many people it can last a lot longer. With help the symptoms can improve gradually. Support of friends and relatives is also important, letting them into what triggers your symptoms also can help.

Post – traumatic stress disorder is a very serious condition, it can upset your relationships, livelihood, and your health. It is vital that the symptoms be recognized and to seek help. PTSD can be treated and managed but not cured. Reach out get help, improve your life and the lives of those who love you!

Comprehensive Mesothelioma Centers

Lisa Hyde-Barrett, RN Mesothelioma NurseOne may ask what happens when you arrive at a comprehensive mesothelioma center. What is the difference between a local doctor and a doctor with years of experience? First of all, a comprehensive mesothelioma center offers customized treatment for each individual. This is not a cookie cutter package where everyone has the same treatment method. Every diagnosis is unique and treated individually. A person will have a battery of tests that will tell exactly where the mesothelioma is and what condition the body is in. There are a variety of options that may be presented to you. While treatments may appear similar to another person’s, I assure you no two treatment plans are the same.

Most often the hardest question asked is what do you want? As we sit in a generalized orientation meeting it is explained that this factor is just as important as any other medical decision. Some people despite how minimal or advanced their disease, want everything done. Other patients may take a different route and choose to take a more passive option. Emotionally this can be difficult. This question requires reflection and conversations with your loved ones. Most people who enter our center have decided they want some treatment but have no idea what their options are. There is no right or wrong answer, and everyone is entitled to make their own decision.

Everyone’s body is different, with its own strengths and weaknesses. This is another reason for all the tests that must be done. Each organ needs to be evaluated for the treatment plan. Some people feel that all of these tests are overkill. However, it is important to remember knowledge is power. Think of your body as a machine with its own assets. While nothing is one hundred percent guaranteed, the more information we have about your body the better we can devise a treatment plan. The other factor involves one’s mental state, what has this diagnosis done to you mentally? If your diagnosis has caused anxiety, restless nights, fear and worry, you are not alone. These emotions are real and can make you feel overwhelmed. Most comprehensive centers offer social workers, chaplaincy and psychiatrists. A serious illness like this can cause emotional issues and you are not alone. Researchers at Baylor University Medical Center have found that 77 percent of people with a terminal illness experience depression. Remember there is no right way to feel about your illness, but it is good to identify these emotions and share with people how you are feeling. Another feature of a comprehensive mesothelioma center is support groups. These centers often provide support groups related to your illness. There are other people who are going through what you are currently experiencing or have been through something similar.

At the end of the day one needs to know they made the best choices possible about their health. It really is about being comfortable about your decisions. Not everyone chooses to travel to a mesothelioma center and that is fine. Often people prefer to stay close to home because that is what works. As research and treatment options continue to progress hopefully the ingredients to a successful treatment plan will be shared and will be available to other areas of the medical community.

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