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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!

Mesothelioma on International Rare Disease Day

Today is Rare Disease Day. This day is set aside as a worldwide event. The first international Rare Disease Day that included the United States was held in 2009. The theme this year is Patients and Researchers Partners for Life.

There are over 7,000 rare diseases recognized internationally, and approximately 90 percent still lack effective treatment. Eighty percent of them have identified genetic origins, and 75 percent of rare diseases affect children. Raising awareness that these conditions exist and that they affect people all over can shine a light on the need for further research.  

In 1983, when Congress passed the Orphan Drug Act of 1983, rare diseases were called orphan diseases because drug companies were not interested in developing treatments for them. This bill created financial incentives to encourage the development of treatment  and a definition of what a rare disease is. The definition of a rare disease in the United States is  a condition that affects fewer than 200,000 people. The definition is different in Europe where a rare disease is a disease that affects 1 in 2,000 people.

Malignant mesothelioma is a rare disease. A rare disease with an active community and supporters. The progress that has been made towards a cure for mesothelioma has been made by research. Research is slow and expensive.

The Mesothelioma Applied Research Foundation has raised millions for research towards a cure. In addition the Foundation supports patients and families throughout their journey with mesothelioma. Awareness and advocacy, continued over time, is important to bring attention to a rare disease like malignant mesothelioma

The overall goal of Rare Disease Day is to improve the knowledge of the general public on what is a rare disease. The National Organization of Rare Disease is raising awareness by encouraging people to light up buildings on February 28th. Their motto is “alone we are rare together we are strong.”

On Monday, February 28th, take a minute to learn about what challenges people with rare diseases face on a day to day basis. See the possibilities that a small community can accomplish when we all work together to a common goal.

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.

New Year is Time for Reflection for Mesothelioma Patients

Happy New Year!

As we welcome the beginning of 2022 and the end of 2021 we reflect on how time keeps marching on. The mesothelioma community continues to be a resilient, caring group. Dealing with a life threatening rare disease along with a pandemic is challenging for patients and loved ones. 

Now that COVID-19 has been with us for almost two years, all of us are reminded about the importance of resilience and patience in taking care of ourselves and each other.

The New Year is a time of new beginnings and new promises, a fresh slate. With the New Year comes some continuing challenges such as the continued COVID-19 pandemic, the toll on the mesothelioma community, and the continued need for research for malignant mesothelioma

We have all seen and experienced the emotional toll that the pandemic has on all of us – how with time we have become weary and afraid. For mesothelioma victims and families those feelings are compounded by being diagnosed with a serious cancer. We started to care for people diagnosed with malignant mesothelioma decades ago, and as we continue to actively care for patients and their families who are diagnosed with this cancer daily, we are amazed at the ability of the human spirit to deal with adversity.

As we welcome the new beginning a New Year offers we are grateful for the advancements of the past years. The year 2021 saw improved survival time for patients with non epithelioid mesothelioma by using a combination of immunotherapy agents ipilimumab and nivolumab, as first line treatment. This treatment has offered options to some patients who did not have many, and is just an example of the steps towards a cure that continue to go forward.

Progress does not come in a straight line. It can be elusive. The New Year offers a chance for thanks and gratitude for continued scientific progress and hope in 2022.

We wish you all a happy, peaceful, and healthy New Year as we go forward together to face the challenges ahead.

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