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For Mesothelioma Patients, Time is What You Make of It

Time is one of our greatest assets. According to Miriam Webster the meaning is “the thing that is measured as seconds, minutes, hours , days, years, etc.” Time is something we all have, we just don’t know how much. 

Many illnesses threaten our timeline and sometimes force us to look at how we spend our time.  Malignant mesothelioma is bad news, with some options, but still with no cure. Researchers, doctors and scientists continue to push science for more information. When diagnosed with this disease or any other serious illness, looking for a timeline is natural. The question often asked is “how much time do I have?” Although no one can say with certainty, there are averages of time that are based on previous patients. When faced with the knowledge that you have a serious illness and your time may be limited, most want the best of what time is left. The best for one, can be different for the next. 

I met a woman a few months ago, she had undergone a pleural biopsy. She was pretty convinced that she had pleural malignant mesothelioma. Prior to confirmation she told me she would choose wisely what type of treatment she would opt in for – which was ultimately immunotherapy. She has responded positively but has been left with some side effects. Her goal is to move out of her present housing situation and live somewhere easier. Physically, emotionally, and financially she has had to make some tough decisions. She feels as if these changes will give her a better quality of whatever time she has. Fortunately, she has a support system and a plan.

Dealing with terminal illness forces us to ask ourselves, how will we live out our remaining days? Some, if allowed, “live like they are dying.” Receiving a terminal illness as a diagnosis almost always forces one to reflect upon their life, and where and what they would like to do with whatever time remains. 

We all measure time with different clocks. Some mark time by births, weddings, deaths, current events. However you choose to measure time, don’t forget to live it and enjoy it. We know when one is diagnosed with a terminal illness it feels as if time is standing still. Despite whatever time you have left, you are given the opportunity to have many conversations with people . These illnesses allow one to say “I love you”, make amends or share some intimate conversations. 

All of us need to cherish our time  and relationships for time is promised to no one.

18th Annual Mesothelioma Awareness Day

Today is the 18th Annual Mesothelioma Awareness Day. This day is set aside to raise awareness of malignant mesothelioma and the need for research.

Malignant mesothelioma is a rare disease that affects around 3,000 people a year in the United States. A disease is considered rare if it affects less than 200,000 Americans a year.

The leading cause of malignant mesothelioma is exposure to asbestos. The exposure can happen as far as 50 years in the past. A lot of Americans assume that this is a disease that does not happen anymore because they think asbestos is banned. Neither of these premises are true.

Through awareness and research progress has been made. Research has given patients options that were not in play in the past. We have seen the direct role that research has played in moving the survivability of patients with mesothelioma from months to living with mesothelioma as a chronic disease.

The mesothelioma community is an active community. Organizing a group to successfully spread awareness is a challenge.

The main group behind the Mesothelioma Awareness Day is the Mesothelioma Applied Research Foundation. They raise awareness and fund research that hopefully will lead to a cure. The Foundation was instrumental in starting and growing this annual day.

Some of the ways that we can all spread the word about malignant mesothelioma is to wear blue on Sunday, support local efforts like walks, and support social media efforts to share the message. Individually we can talk with people about the disease and the devastation that it inflicts on families and help spread facts of this disease.

With the pandemic we have seen what awareness and sense of urgency can do. Making scientific research a focus and a national priority can help further the search for a cure. Research and support of research is the key to curing mesothelioma.

On Sunday, September 26, 2021 spend some time spreading the word! 

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!

This Labor Day, Let’s Reflect on Those Exposed to Asbestos on the Job

Today we reflect on what Labor Day is and has become.

According to the official definition from the Department of Labor website, “Labor Day is an annual holiday to celebrate the economic and social contributions of workers to the strength, prosperity, and well-being of the country.”

In the United States, Labor Day is a federal holiday currently observed on the first Monday of September. The first Labor Day was celebrated on September 5,1882.  Labor Day has its origins in the labor union movement which advised 8 hours for work, 8 hours for recreation and 8 hours for rest. Through their movement they help shine a light on workers conditions and change laws to regulate working conditions.

Labor Day is also the unofficial end to summer often that is what many people associated with this holiday. As we enjoy our families and friends this last unofficial weekend of summer, we should stop and remember the people who are battling illnesses related to their occupations.

Asbestos is the number one cause of work related deaths worldwide. More than 39,000 lives are lost to asbestos related illnesses each year. Although many think asbestos has been banned in the United States 1.3 million workers are at risk of exposure.

Malignant mesothelioma and asbestos related diseases have historically affected the working man and women. From the asbestos mines, to servicemen serving our country the exposure to asbestos through insulation, and the many products made with asbestos  has continued to affect the health of many workers.

People that are diagnosed with Malignant Mesothelioma can often pinpoint their exposures to jobs held many years ago. The incubation period from exposure to asbestos and development of Malignant Mesothelioma can be as long as 50 years.

Enjoy the holiday and hopefully in the not so distant future we can add banning asbestos to one of the movements that contributed to improved workers health and safety.

Unique Perspective: Mesothelioma Patients Can Set Personal Goals

Being diagnosed with malignant mesothelioma is life changing and patients handle this differently. Every person is unique in their response to this news, but how we respond to a serious life altering diagnosis is our own. There is no right or wrong way, as we must allow ourselves or our family members to feel their fear, or anger, or whatever emotion they may be feeling.

Often we hear people apologizing for their reactions or their families actions. The realization that you or a loved one is facing a life changing diagnosis is different from any other challenge you may have faced over your lifetime. Often we see fear, anger, and denial that are expressed in many different ways. The person that receives the diagnosis and their friends and families can become overwhelmed by waves of different emotions.

Recently when visiting a patient recovering from a pleurectomy, he explained that his goals were to get back to being an active person. He was elderly, had surgery, and was home recovering. He had a smooth course as far as complications go. What was bothering him the most was how long it was taking to recover.

He wanted to get back to his previous level of activity as soon as possible. He was an active hiker, skier, cyclist, and walker. His house was surrounded by woods and he was determined to get back to his trails. He explained that when he was outside with nature it gave him a calm feeling, and that is why he loves nature and wants those feelings to come back. 

When reminded that he was only three weeks post operation and he was doing very well, he listened politely. He is determined to get back in the woods and go hiking. He has made that his goal. He knows his health has changed and he has a serious illness but he is coping in his own way. If he can ever get back into the woods remains to be seen.

Change can be hard. Changing our outlook can be overwhelming. What is important in one person’s life may not be important in another’s. The thoughts of hiking in familiar woods after major surgery might not be anyone else’s goal. Respecting every person’s individuality and way they cope is essential to everyone who is involved in the care of or is helping a loved one facing malignant mesothelioma

If you are part of the support team, or are the patient yourself, respect the feelings and emotions that go along with this journey and know nothing stays the same. Every day is a new beginning and that is all we really have. If you are struggling, get involved with a support group or call your mesothelioma team. We are here for you if you need a listening ear or help with resources. You are not alone.

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