As new innovations and treatments emerge, there is growing hope in the mesothelioma community. We have written about clinical trials, chemotherapy, surgical interventions, palliative care, radiation therapy and more, but behind all this research into different treatment modalities, there is a passion that drives us to work towards a cure. According to Webster’s Dictionary, the definition of passion is a “strong feeling of enthusiasm or excitement about something or about doing something.” Passion is exactly what we experienced at a conference last week in New York, surrounded by doctors, nurses, advocates and caregivers.

The International Association for the Study of Lung Cancer (IASLC) hosted a conference for the mesothelioma community to share their findings related to research into mesothelioma. Because mesothelioma is an international issue, there were experts and researchers from all over the world collaborating, sharing research, and debating on cutting-edge research and treatments for this disease. Throughout the conference, there was a common and shared passion to keep going forward, to learn from others’ experiences and stay informed on which treatments have worked and which do not.

As we convened in a conference area, many shared more private and personal stories of hope and success in fighting this illness. Shared stories have a way of bringing the mesothelioma patient’s experience to the people behind the scenes, who use the information for passion to continue and innovate in their research. Mesothelioma is a rare disease, and to have world-renowned experts collaborating and sharing is a testimony to the passion of the mesothelioma community.

Each month at our Mesothelioma Center, we meet many new patients, each with new stories about how this disease has affected them. Fortunately, we all have passion in treating this disease and not one of us – doctor, nurse, patient nor caregiver – has ever given up. We are a group of healthcare professionals who found ourselves caring for people who have a rare disease. While the challenges of treating mesothelioma are ever present, it is our passion that drives us to get to know each patient, stay connected and informed with the mesothelioma community, and dare to try new treatments in hope for the best.

When finding a mesothelioma center and a team to treat you, be sure to be mindful of the passion. It is a feeling of encouragement and energy that cannot be found anywhere else. Passion is not taught in medical or nursing school; it is found in a team of people who care and want to see patients have the best possible outcome. There are plenty of other places people could have chosen on a humid summer’s day in New York City, but the mesothelioma community chose to be at the IASLC conference and contribute their discoveries to the world. There was hope and passion from all, and this will help develop more treatments.

When 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.

“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.

One 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.