Author: Lisa Hyde-Barrett

“Grand Gestures” After A Mesothelioma Diagnosis

• Lisa Hyde-Barrett
• Nurse's Corner

Anyone with a diagnosis of cancer knows how it can make you look at your life and how you are living it a little differently. Some cancer patients make radical changes – such as quitting a job, finding more meaning in spirituality, or taking on something that they always wanted to do and doing it. These changes can sometimes be life changing. In the July 28 issue of Cure, the article “Patients With Cancer Find Purpose in Radical Feats,” highlights people who have been diagnosed with cancer and have then done something new, something that they wanted to do now that their life may be ending. The cancer diagnosis allowed them to find the inner strength they needed to take on these challenges. One patient climbed Mount Everest, another started a major fundraiser for metastatic breast cancer.

In addition to making big changes and undertaking grand gestures, for some people, it is finding the joy in everyday tasks. All of our life’s journeys are uniquely our own, all are experiences that affect the unique way we our lives. Part of living is facing our own mortality. As uncomfortable as it is to think and talk about, we are all going to die.

Recently, I was talking to a survivor of malignant pleural mesothelioma. He was in his late 60’s and had been diagnosed 18 months ago. Since then he had surgery, chemotherapy, and was back for a possible reoccurrence. Before his diagnosis, he had been working, avoiding retirement, unsure if he ever would retire. He was fearful that he would retire and have too much time on his hands, and end up doing a lot of things he did not want to do in order to keep his wife happy. He did not see retirement as an event to look forward too.

Now 18 months later, he has put his diagnosis of malignant pleural mesothelioma in a positive light. He is grateful for every shared trip to the grocery store, doing errands together, going out with friends. For him, being diagnosed with cancer gave a different meaning to his retirement. He has a new sense of purpose, enjoying every minute of his life. The cancer diagnosis has put work and living in perspective. As he said, “What I feared about retirement is now what I enjoy and live for.”

For some people, a cancer diagnosis can spur major changes, for others it can make them appreciate what has always been in their lives. It can change your outlook on what is and is not important. Everyone’s response will be as unique as they are. Facing our own mortality will do that to us!

Determining What’s Important After A Mesothelioma Diagnosis

• Lisa Hyde-Barrett
• Nurse's Corner

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.

Balancing a Mesothelioma Diagnosis With Hope and Trust

• Lisa Hyde-Barrett
• Nurse's Corner

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.

The Faces and People Behind the Mesothelioma Statistics

• Lisa Hyde-Barrett
• Nurse's Corner

When diagnosed with malignant mesothelioma, the survival statistics can be daunting to comprehend. Statistics are numbers, and it is vital that you remember that there are people behind those numbers. People with lives and families, like your own. Sometimes it is good to hear stories of people that are living with mesothelioma as part of their lives. Professionals tell us that there are survivors, but to talk to one, to see one living their best life can be very helpful for both patients and caregivers.

In the publication “Breath of Hope,” by the Mesothelioma Applied Research Foundation, the cover is about two people with malignant pleural mesothelioma who have connected after both having one of their lungs removed. These two people, Heather and John, connected in 2013 on Facebook. Heather is a survivor. Diagnosed in 2005, she had surgery in 2006 in which she had a left extrapleural pneumonectomy with heated intra-op chemotherapy.

John was diagnosed in 2012, and he underwent a right extrapleural pneumonectomy after undergoing chemotherapy before the surgery. Every person’s journey with mesothelioma is different, but there are similarities in the positive lessons they have taken from their experiences.

John talks about how important music has been throughout his life, and even more so now with his journey with mesothelioma. Heather was a hair professional before mesothelioma. She has been unable to go back to that line of work, and she has shifted her focus to patient advocacy.

Heather said, “I look at things far differently than I did before cancer and would say I’m a better person for it.  I’ve tried taking something terrible and find the good.”

Both are parents of a daughter. Both have learned to savor every minute of being a parent, of being alive, and in being able to influence their daughters.

Both acknowledge that there have been times of despair. Both have had challenges along the way. Both are living their lives with mesothelioma. Both have become friends with similar interests besides mesothelioma.

Heather finishes the article saying, “…it’s the people that are the silver lining in every storm.”

People not statistics, stories behind the numbers, faces of survivors with malignant pleural mesothelioma sharing their journey and their lives, helping others. Living with mesothelioma.

Be Prepared for Mesothelioma Awareness Day With the Facts

• Lisa Hyde-Barrett
• Nurse's Corner

As the summer winds down and Fall approaches it is time for new beginnings. For the kids, it is the start of the new school year. For the mesothelioma community, September brings Mesothelioma Awareness Day on September 26. The day has been set aside since 2004 for the mesothelioma community to raise awareness about mesothelioma.

Over the years we have learned from the patients and families we have had the privilege to care for, that most people know two things about mesothelioma. The first is that mesothelioma is caused by asbestos. Most people then go on to say, “but we don’t have asbestos in the U.S. anymore.” The second thing that our patients have said over the years is that they have heard of mesothelioma from the television ads. They know the word, they know it is a serious cancer, but that is about it.

The Awareness day is to help the mesothelioma community enlighten more people to the facts about asbestos exposure, asbestosis and mesothelioma:

• Mesothelioma is a rare cancer. It is less than 1% of all cancers.
• The number of people affected in the United States is approximately 2,800 to 3,000 people a year.
• Asbestos is not banned in the United States, it is still used in many products.

One of the most important things that needs to be emphasized, is that despite the history of malignant mesothelioma, there is hope. Hope that this disease can be cured. Hope that the doctors and researchers and scientists who have dedicated their careers to this disease, are making progress.

Raising awareness starts with all of us. There are planned events for the day including encouraging people to wearing blue, and assembling at Rockefeller Plaza in New York on the set of the Today Show to spread the word.

Awareness helps to put a face to a deadly cancer. Education and research along with hope, can only help further the work of the mesothelioma community.

On September 26, Mesothelioma Awareness Day, plan to make a difference!