Determining What’s Important After A Mesothelioma Diagnosis

Once in awhile it is important to step back and take stock of what is important to you and what is not. A recent mesothelioma patient and his wife reminded me of the importance of reflection. They were a couple from another state. He had recently been diagnosed with malignant pleural mesothelioma and they had come to a mesothelioma center to see what options were available. The diagnosis had been a difficult one and it had taken a few months to make.

After meeting with the mesothelioma team and undergoing testing, one of the options presented to them was surgery. They decided to undergo the surgery and returned a few weeks later for the surgery. Visiting them after surgery, the patient could not say enough about how good his wife had been to him, and how he could not have done it without her. As he was recovering, though, a hurricane hit their home state and they couldn’t leave when the time came. For a time, they did not even know if they had a home to return too. They took this all with great patience and acceptance.

When someone asked if the past few months had been the worst time of their lives, they responded they did not see it like that. The past few months had been challenging from the diagnosis, to the surgery, and now the hurricane, but they were focusing on the people they had met. They had been shown so much kindness, and now they were so much better off for not being at home when the storm struck. They had taken one of the most stressful times in their lives as an opportunity to get closer to each other, their friends and families, and to really think about what was important and what was not.

They did get back home and had some damage to their property. When talking to them once they were home, they were again counting how lucky they had been and thankful to all that had helped them. “Things can be replaced or repaired.”

When diagnosed with any type of serious illness, it is a challenge to remain positive and move forward. In addition to the physical challenges, there is the fear of what the future holds. The way this couple handled their challenges, which such clarity of priorities, is inspiring.

Sometimes when you are in the midst of a situation you can get caught up in wasting time on things that really do not matter. When you reflect on these situations, ask yourself if what you are reacting to is really important. A lesson taught by people who have realized what is important to them.

September 26 Is National Mesothelioma Awareness Day

Each year, the mesothelioma community across the nation comes together for Mesothelioma Awareness Day, a time devoted to raising public awareness about the life-threatening cancer and its cause ─ exposure to asbestos.

Patients, family members, friends, advocates and health care professionals are encouraged to share their personal stories, struggles and inspiration in order to bring attention to the disease and further the search for a cure.

When Is Mesothelioma Awareness Day?

Mesothelioma Awareness Day is held on Sept. 26. In 2018, September 26 falls on a Wednesday.

In an effort to expand the impact of Mesothelioma Awareness Day, advocates have encouraged patients, caregivers, family and friends to participate in Mesothelioma Awareness Week surrounding Sept. 26, as well as Mesothelioma Awareness Month throughout September.

Mesothelioma Awareness Day History

In 2004, the Mesothelioma Applied Research Foundation organized the original Mesothelioma Awareness Day. Since then, the national nonprofit organization has continued to build momentum by promoting the day as a time for all those touched by the cancer to talk about its impact.

In 2010, Congress joined the effort by establishing Mesothelioma Awareness Day as a time for the nation to recognize that thousands of Americans are diagnosed with the preventable cancer each year. In fact, despite its designation as a known carcinogen, asbestos is still not banned in the United States, and Americans are still at risk of exposure.

The Importance of Awareness Day

The National Mesothelioma Awareness Day resolution asks that the President of the United States issue a proclamation calling for all Americans, federal agencies and departments, state governments, local municipalities, organizations, and news media to properly observe the day.

The Congressional Declaration outlines these key facts about malignant mesothelioma as reasons for promoting awareness of the deadly asbestos cancer:

Although workers who were exposed to asbestos on a daily basis over a long period of time are most at risk of developing mesothelioma, even short-term exposures can cause the disease. In fact, exposure to asbestos for as little as one month can result in mesothelioma 20 to 50 years later.
Asbestos materials were used in the construction of virtually all office buildings, public schools, and homes built before 1975. Still today, asbestos is used in more than 3,000 products being sold in the United States.
The National Institutes of Health reported to Congress in 2006 that mesothelioma is a difficult disease to detect, diagnose and treat.
For decades, the need to develop treatments for mesothelioma was overlooked. Still today, even the best mesothelioma treatments usually have a very limited effect, with the expected survival time of 8 to 14 months.
It is believed that many of the firefighters, rescue workers and police officers from Ground Zero on September 11, 2001, may be at increased risk of developing mesothelioma in the future due to asbestos exposure at the site.

Every year, about 3,000 people in the United States are diagnosed with mesothelioma. Around the world, an estimated 38,400 people die each year from the devastating asbestos illness.

Unfortunately, those numbers are not dwindling. Mesothelioma statistics indicate an increase in deaths in recent years, with an 8 percent increase in fatalities in the United States for the 10-year period that ended in 2015.

These facts point to the importance of Mesothelioma Awareness Day in educating people about the dangers of asbestos and promoting the need for continued research into more effective treatments.

Paint the World in Mesothelioma Awareness

Just as breast cancer is associated with the color pink, support for mesothelioma awareness is often represented by a colored ribbon. The mesothelioma awareness color is blue or pearl.

Friends and family members of patients typically don pearl or blue ribbons in a show of solidarity with their loved ones who are fighting the life-threatening disease.

The Mesothelioma Applied Research Foundation also encourages people to participate in its “Paint the World in Mesothelioma Blue” campaign to raise awareness by wearing blue and sharing photos of themselves on social media.

How You Can Show Support on Mesothelioma Awareness Day

Since its founding, the nonprofit Mesothelioma Applied Research Foundation has advocated for patients and families while coordinating fundraising events to support research efforts related to the disease. This national organization is committed to finding a cure for mesothelioma and ending the suffering it causes.

One way to show your support on Mesothelioma Awareness Day is to make a donation to the Meso Foundation. Your contribution will help fund the organization’s efforts to support mesothelioma patients and the ongoing search for a cure.

You may also choose to show your support by wearing (and asking others to wear):

Mesothelioma awareness ribbons
Mesothelioma awareness pins
Mesothelioma awareness bracelets
Mesothelioma awareness wristbands
Mesothelioma awareness shirts

At Mesothelioma Help Cancer Organization, we aim to raise awareness year-round, in particular through our Mesothelioma Awareness Scholarship Contest. As part of this contest, students submit essays sharing their own experiences with mesothelioma as well as their efforts for raising awareness of the dangers of asbestos. We encourage the students to share their essays on social media to help spread the word.

Quick Facts to Share on Mesothelioma Awareness Day

Asbestos is the only known cause of mesothelioma. It has also been shown to cause lung cancer.
Asbestos was commonly used on Navy ships and in shipyards. Veterans account for approximately one-third of mesothelioma diagnoses.
Industrial workers and construction workers are at an increased risk of developing mesothelioma and other asbestos diseases.
Family members of those who worked with asbestos may have faced secondhand exposure through fibers brought home on clothing or skin.
Although the U.S. government has safety regulations in place, it has not banned the use of asbestos.
There is no safe level of asbestos exposure.
Renovation projects on older homes and demolition of older buildings can put people at risk of asbestos exposure.
Never try to remove asbestos materials on your own. Contact an asbestos abatement professional.
Companies that made asbestos products understood the health risks but failed to warn the public.
Mesothelioma patients and families may be entitled to compensation for damages due to asbestos exposure.
Even if an asbestos company has gone out of business, funds may be available in a bankruptcy trust for mesothelioma victims.

Sources:

Mesothelioma Applied Research Foundation
https://www.curemeso.org/get-involved/get-involved-events/mesothelioma-awareness-day
Make a Donation
https://www.curemeso.org/donate

Balancing a Mesothelioma Diagnosis With Hope and Trust

On a Sunday morning talk show, Senator John McCain who was recently diagnosed with glioblastoma, an aggressive brain cancer, talked about his diagnosis and how he was dealing with it. “I’m facing a challenge. But I’ve faced other challenges, and I’m very confident about getting through this one as well.”

Like malignant mesothelioma, glioblastoma is an aggressive cancer. Scientists have been working on treatment options for both of these diseases. Progress towards a cure takes time, and reality is that some will benefit from others who have gone before them.

Balancing the devastating diagnosis of an aggressive cancer with hope is also a challenge. Hope that a cure will be found in time for you or your loved one to benefit from. In addition to hope, you also need to trust. Trust that your medical experts will recommend the right treatment in the right time frame that will improve your quality of life. Trust that you have chosen the path that is right for you. Hope that you get some quality time with your loved ones.

Over the years of taking care of mesothelioma patients, one of the things that is reinforced daily is the complexity of the disease. From obtaining a diagnosis, to staging, treatment options, timing of chemotherapy, surgery, radiation, or the possible involvement in a clinical trial, this aggressive disease has many sides. We learn about aggressive cancers by brave victims that have suffered with this disease before us.

As we all face challenges throughout our life, and Senator McCain has lived through many daunting challenges, we are reminded about how complex the cancer diagnosis can be. We wish him only the best possible outcome as he starts his journey. When someone famous or powerful is diagnosed with cancer, it can serve as a reminder to all of us of our mortality. No one is exempt from health challenges, it is how you handle them, and who you surround yourself with, that can determine how what could be the final chapters in your life will play out.

Senator McCain’s journey is beginning. Wherever you, or your loved one, is on your journey may you know peace of mind and be surrounded by hope and trust in your medical decisions.

Ask Jennifer: How Did You Hide Your Worry About Your Father’s Mesothelioma?

If I had a superpower, it would be worrying. You name it, I worry about it. As much as I try to stop, it’s something that just seems impossible to me; however, with a lot of praying, it’s starting to get better.

Even so, when my Dad started to fall ill, I began to panic. I played out every scenario of what could be wrong, how we would handle it, and ultimately what the happy outcome would be. (Even though I worry, I’m an optimist… odd juxtaposition, I know.) One thing that I never thought of was mesothelioma. I knew next to nothing about it and thought it was something that you just saw on commercials. There was no way it was happening to my father.

People sometimes ask me how I managed my worrying tendencies during these trying times. The answer is, I didn’t. I tried my best to hide it, especially in front of Dad, but I think that everyone saw through my act. Even at the moments where my strength may have appeared to peak, I was completely broken inside. I don’t know how I made it through any of it; I take that back, I only made it through because of God.

A lot of the time, I tried to put on a happy face and pretend that I wasn’t concerned. After we received good news, we celebrated, and I was absolutely thrilled each time, but in the back of my mind, that old fear always seemed to creep in. I thanked God for the joy, but wondered when the next wave of sadness would begin.

Still today, even though we’re approaching the four year anniversary of his passing, there is still sadness in my heart from his loss. It’s true that I am extraordinarily happy with my husband and daughter, and with my family who loves me unconditionally, but there is still a piece missing that could make that happiness even more amplified. I am constantly questioning what Dad would be doing today if he were here, or what would he think about certain situations. I always want to send him a picture of my child or tell him the funny thing she said, just to hear his beautiful laugh.

A piece of me is missing without Dad, but what is also missing is the worry I carried for him. I am certain that he is in Heaven where there is no worry or sickness. He is free from this awful disease. I know that he is looking down on me, and that he doesn’t want me to worry about him anymore; he is with God, laughing and smiling each and every second.

Global Study Shows Mesothelioma Deaths Continue to Rise

In March, MesotheliomaHelp presented information on the increasing number of mesothelioma cases in the U.S., but researchers continue to struggle to get a handle on the worldwide trend of mesothelioma. Now, in a newly released study, researchers concluded that globally, the incidence of mesothelioma cases has continued to rise.

An international team of researchers from Japan, Australia, the United States, the UK, Thailand and Singapore set out to determine the burden of mesothelioma deaths throughout the world. The team analyzed data from the World Health Organization’s mortality database of 230 countries for 1994 to 2014.

Realizing some countries are better at reporting mesothelioma cases, they broke the 230 countries into three groups:

59 countries with quality mesothelioma mortality data suitable to be used for reference rates;
45 countries with poor quality data; and,
126 countries with no data.

Using the countries reporting quality data, the researchers counted 15,011 mesothelioma deaths in the last three reporting years, 2011-2014. They then extrapolated from this information that the global number of mesothelioma deaths is 38,400 per year.

“The estimates are within the range of previously reported values but higher than the most recently reported values,” the researchers said.

Expert Insight

“The global numbers and rates of mesothelioma deaths have increased over time.”

Share on Facebook

While the researchers say the estimate depends on the validity of the data, they noted that their estimates “can be updated, refined and verified” from the commonly accessible data and their use of a “straightforward algorithm.”

Mesothelioma is a rare, aggressive cancer that is caused by past asbestos exposure. Although asbestos is banned in over 50 countries, a surprising number of them still mine asbestos and use the mineral in construction products. The U.S. has not banned the product and still imports over a 1,000 tons of it a year, according to the Asbestos Disease Awareness Organization.

When assessing the reported data, the researchers report that due to mesothelioma’s rarity and difficulty in diagnosing the disease, many countries are still struggling with accurate reporting. They also said reporting from even the “quality data” countries was not consistent. In fact, they said, “No country reported mesothelioma deaths for all of the 21 studied years.”

“Clearly, mesothelioma is a global health issue,” the team concluded.

Read the full study in the Sept. 2 issue of Occupational and Environmental Medicine.

Mesothelioma Help Cancer News