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Where Can Mesothelioma Patients Find Hope?

With the state of the world right now, it is hard to maintain a hopeful outlook. Is there a place for hope?

From the larger version of what is going on in the world’s stage, to the very personal journeys we are all on, is hope enough or even possible with the current world events? It is hard not to despair against the overwhelming odds and events that are going on. Despair being the opposite of hope.

When diagnosed with a life threatening cancer, or any time we pause to reflect on our lives, we review our wishes, our hopes, and what has happened to our lives. Our hopes range the spectrum and are as different as we all are. We hope for a cure for our disease. Hope for no pain. Hope that your loved ones’ pain is eased. Hope that our time left is meaningful. Hope plays a part in any cancer journey. 

A pioneer in Mesothelioma research, Dr. David Sugarbaker, used to say “when hope is in the equation, the odds don’t matter.”

What if despite what you hope for, the outcome is not what you wanted? What do we do when we lose a loved one to cancer?

One person turned their despair into hope and hope for others. In 2009, Greg Chastain lost his mother to cancer. One of the things that he enjoyed doing and his mother enjoyed watching was his performances in community theaters. When his mother died he was appropriately devastated. A week after, he went on with the show he had planned to be in. His theater family was so supportive, he decided to do a one time benefit to raise money for cancer research.

The benefit was such a success, he started Voices for Hope. “We are ordinary people on an extraordinary mission to find a cure for cancer.” Voices of Hope, all volunteer performers whose lives have been affected in some way by cancer, perform and raise money  and donate all of it to cancer research, for the collective good. Research toward a cure. One person turning despair into hope. Hope for a cure for cancer.

Research for malignant mesothelioma has long been supported by individuals who have been affected by this disease. Maybe the cure did not come in their lifetimes, or their loved ones’ lifetime, but maybe it will come in their children’s lifetime. Hope for better outcomes, for the collective good.

To have hope is to want an outcome that makes your life better. We hope that this positive example that one person took with his despair may potentially help to impact  many of us, through successful research to a cure.

As we  all collectively join together, w  hope for peace.

Mesothelioma Patients Must Invest in Themselves

Undergoing treatment for mesothelioma can be a challenge to sustain for the long haul. The mesothelioma team invests in the patient, with their expertise and time. This treatment plan is most successful when the patient is willing to partner with the team as well. For most treatments of illnesses, the best equation is that the team and the patient are invested in whatever it takes to make the best possible outcome for the patient. Usually the relationship between the patient and team is ongoing and long term.

Once the plan is formulated and executed, a plan that could involve radiation, chemotherapy, immunotherapy or surgery or a combination of therapies, and the patient is home managing his care, often the physical and emotional challenges set in.

With improvements in therapies for a growing majority of patients, malignant mesothelioma can become a chronic condition for some. Chronic conditions require attention and balancing.

Living with a chronic condition day to day is challenging. The CDC describes a chronic condition as   conditions that last one year or more and require ongoing medical attention or limit activities of daily living or both. It is also estimated that between 95 and 99 percent of chronic care is managed by the person that has the chronic illness.

Most patients will do anything to get better so that is a great start on the investment. It requires activity, nutrition, and a good mental state. What makes a patient who has a rare disease have a good mental state is a good question. The mind is a huge component of fighting illness, and it helps us move forward and not get caught up in our thoughts.

There are many ways patients can stay positive and engaged. You can commit to making a new habit – research shows that it can take up to 66 days to form a solid habit. Many make a list of activities they would like to perform and monitor their progress. Everyone deals with ups and downs – there will be good days and not good days. Sometimes things seem easy that were difficult the day before.

Researchers have shown that being grateful can have positive effects on your brain and increase happiness. Researchers also suggest writing down a list of things that you appreciate, to remember that much more of what we are grateful for. If you have a diary of things you are grateful for, this will become a tool to reflect upon.

The key to being the best you can be while you continue your living with malignant mesothelioma is self-investment of time in your health for the long term. You are the biggest investment and if you don’t invest in yourself, who will? Basically, it is investing or contributing time to you. The investment can include physical, mental, or spiritual activities.

One investment that you know will return dividends is trying to achieve the best possible outcomes with your health. Make it a habit to live your life to the fullest with malignant mesothelioma for the long haul!

A Necessary Discussion: End-of-Life Options for Mesothelioma Patients

The COVID-19 pandemic has been a frightening time for all of us. The uncertain nature of the disease and number of people affected brings the importance of what we want at the end of our lives to the forefront. With hospitals and skilled nursing facilities limiting visitors and the inability of some to travel, it is necessary to discuss what we wish to happen at the end of life with our loved ones.

We all know that when one person within our family or group of friends gets diagnosed with a severe illness like malignant mesothelioma, it affects all of us. Uncomfortable conversations need to be had. However, navigating these complex and potentially life-altering conversations can be done in a reflective, thoughtful way. 

As nurses, we have long heard our peers state that they would never have chosen the treatment that a particular patient went with, only to confront a health challenge themselves and choose the same treatment option. 

Our relationships are the most important connections that we have. What we value and who we love are all individual decisions. Once we self-reflect on what we value and how we would like to live our final days, we need to let others know. To ensure your wishes are carried out, they must be shared with those who care about us: a spouse, partners, friends, and so on. Your medical team needs to know your desires, but more important than anything is that you and your loved ones know them.

Having essential conversations regarding our end-of-life wishes should be done by all of us, ideally before a health crisis. But unfortunately, it is easy to put off these conversations. 

There is guidance and help on where to start thinking and planning about our wishes. Ellen Goodman, one of the co-founders of the Conversation Project, sums up their goal:  “Conversations about what matters to you, not what is the matter with you.”

There are workbooks to help clarify your values and wishes. What do you value? Do you want to be home when you die? With who will you share your wishes? 

In this complex world, sometimes we need to get back to basics and accept that we all are mortal. Talking and planning will not hasten our end of life but enable some peace when it does come. Ensuring that what you as an individual value and the decisions you want are honored can offer some peace of mind for both you and your loved ones.

Your Mesothelioma Diagnosis is the Start of a Journey

Being diagnosed with malignant mesothelioma will most likely change your perspective about life. The things you put emphasis on will no longer hold the same value. The relationships and everyday things you paid little or no attention to will now seem important. Our value system as you know it changes, our viewpoints will change without any conscious awareness. 

Most likely you will learn more about yourself than you ever thought. You will begin to understand what makes you tick. When recovering from mesothelioma you will learn to understand your body. A whole new relationship will form. All of a sudden you will have certain hours of the day that you will perform better than others. There will be foods that give you energy, while others that once provided comfort will now be less appealing. You will learn the art of compensation and the art of acceptance.

You may not like the limits mesothelioma has placed on you but you will learn to figure it out. Some days will be very difficult while others will go by with more ease.

Having a rare disease like malignant mesothelioma is not easy on any level. Most medical professionals will paint the worst case scenario, and then the real experts of this disease will give you all scenarios. These will range from the very best to the very worst. Some of this will be up to you. 

Of course, your disease is there. The type and the extent are facts. Taking a step back after the initial shock takes place may be the best thing you can do. Picking and choosing the things or situations that you are in charge of may be helpful. 

Remember the things that made you smile yesterday are still there. Make a list of the things you can do while treating Mesothelioma. Pull every positive aspect you can and write it down. Being overwhelmed can interrupt your thought process. If you can only think of a couple of items that you are in charge of then just write them down. Keep the notepad handy. 

Another thing you can do is think of the things you are grateful for. It is a difficult time to feel grateful but just make the list. When you are feeling not so well some day you can go back and reflect upon these ideas. Your mesothelioma journey will take you to a place where your life will change, you will meet people and you will learn to smile again with your loved ones and your new friends.

An Update on Malignant Mesothelioma from Dr. Raphael Bueno and CureMeso

The Mesothelioma Applied Research Foundation has a series hosted by their Executive Director, Mary Hesdorffer N.P., that interviews experts in malignant mesothelioma. This month the guest was Dr. Raphael Bueno, Chief Division of Cardiac and Thoracic Surgery at Mass General Brigham Hospital in Boston, Massachusetts.

Dr. Bueno reviewed the progress that has been made. In the not too distant past it was believed that anyone diagnosed with malignant mesothelioma was handed a death sentence. Today, malignant mesothelioma has many options to offer for treatment. The knowledge of malignant mesothelioma has evolved like many other cancers and therefore treatment options have as well.

Dr. Bueno reviewed that in order to understand mesothelioma, we need to understand the genomics of the disease. Genomics is the biology of the structure, function, and evolution of the tumor. Basically it’s understanding the fingerprint of the tumor. Once it is understood how it can react in certain settings, we can treat it. This does sound pretty basic but it has taken a long time to figure this out. Each malignant mesothelioma tumor is unique like one’s own fingerprint.

Another treatment that has been found to be equal or better was the pleurectomy. In previous years, many more extra pleural pneumonectomies (also known as EPP removal of the lung) were performed on patients. It has been found that removing one’s lung in someone that is 70 years or greater can create other issues. Pleurectomy has become the surgical choice. It has also found that instilling IOHC, Intra-Op Heated Chemotherapy, was key in attacking any microscopic cancer cells that could not be detected with the eye. This has also improved survival. 

It has also been discovered that everyone should not have chemotherapy. Some patients do not respond to chemotherapy and their tumor continues to grow and they lose the option of becoming a surgical candidate. Chemotherapy is effective for 23-25 percent of the population for a 5 year survival.   

As the talk went on, Dr.Bueno spoke about local recurrence. He educated the audience about how local recurrence is not metastatic disease, it is just what it is: local. There are options to remove this growth. Ablation or surgical removal of the tumor can be as simple as a day procedure or an overnight hospitalization. Ablation is similar to burning a wart off.      

Dr. Bueno’s closing remarks were about the future and what will help cure this disease. Malignant mesothelioma does not have to be a death sentence. This is an aggressive disease but there are many who are still living beyond five years. He believes staging is critical. Dr.Bueno spoke about getting the mesothelioma patient to a Center of Excellence. He explains we do not have a cure but we certainly offer better outcomes. A Center of Excellence can offer hope to a patient that has been diagnosed. 

Progress to a cure continues!

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