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It’s Time to Start Planning for Mesothelioma Awareness Day
Mesothelioma Awareness Day is once again upon us! On September 26, people will come together raising funds and spreading awareness of this awful disease. Remember that together we can make a difference and work to find a cure.
Once again, my family will be putting together a raffle table at Dunbar Community Fest in my Dad’s hometown. We have received donations from family, friends, and businesses who have been extremely generous with their support. All the proceeds will benefit the Mesothelioma Applied Research Foundation (www.curemeso.org) who provide support to those impacted by mesothelioma, as well as funds dedicated to research.
What can you do to participate in this special day? The sky is the limit! Hold a fundraiser, talk to someone about mesothelioma and the dangers of asbestos. Anything you can do will provide a positive impact.
Education is an important aspect in the fight against mesothelioma; get involved! Check out The Meso Foundation’s website for more information on events in your area. Help out with one, or start your own! The mesothelioma community appreciates your continued efforts and prayers!
Turn to the Mesothelioma Community to Find Others Who Have Walked in Your Shoes
Sometimes the journey with mesothelioma can be an isolating experience, at these times it is important to reach out to the mesothelioma community. All of us have our own stories to share – patients, family members, healthcare providers, friends – we all have our own perspective, our own experiences. By sharing our experiences we help those who are struggling see a light in the tunnel.
This week, a patient who was contemplating a clinical trial but had not yet committed because he was worried about the side effects, was put in touch with someone who had been in the same trial. He talked to someone who had been where he was, and found out that the person is doing well. The participant was able to re-assure him that he had not suffered the side effects that he was worried about. Although there is no guarantee that he will be as lucky and not experience the side effects, he was still comforted by talking to someone who had walked before him.
The importance of belonging to a community- of belonging to something bigger than ourselves- is a basic human need. As humans, we need to belong. No patient chooses to belong to the mesothelioma community, but still he is comforted by it.
No man is an island entire of itself; every man is a piece of the continent, a part of the main… ~ John Donne
There are many ways to stay connected today. Social media is an important part of life. We can stay connected with each other through Facebook, Twitter, Instagram, and email. Some patients and caregivers have the opportunity to put a face to a name by meeting some of the leading researchers, and long term survivors, at an upcoming conference to be held on Sept. 26, Mesothelioma Awareness Day, in New York City.
The 2015 New York Regional Conference on Malignant Mesothelioma is a collaborative effort between the Mesothelioma Applied Research Foundation and Memorial Sloan Kettering Cancer Center. See The Meso Foundation for more information.
Research is how mesothelioma is going to be cured. Hearing about progress, from the researchers and hearing about the clinical trials that are ongoing also helps to strengthen the bond of community. Join the mesothelioma community and learn about the latest research, reach out and find some support, and make some new friends!
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
Respect and Kindness Lessen the Discomfort of Mesothelioma Diagnosis
Certain subjects can make us uncomfortable. Hearing of someone diagnosed with cancer is one of them. What do you say? Do you ask questions? Do you acknowledge the diagnosis? Coming up with the answers can be challenging, especially when the diagnosis is mesothelioma. Unlike some cancer patients who lose their hair during treatments, often, the mesothelioma patient looks the same as always.
Expressing concern might not seem like enough, but often it is the kindness that is remembered. Sometimes it is not the words that help a patient, it is just being present and listening to what the patient is going through that is helpful. Although you might want to reassure the patient, saying something like “everything will be ok, because my neighbor had the same cancer and is fine, ” resist the impulse to minimize what the patient is going through. Although your intentions are good, the fact is that everyone’s cancer is different, and your neighbor might have a different type of the same cancer which has a totally different treatment plan. Listen more to what the patient is going through.
I heard this week about a patient who had gone through chemotherapy and had lost her hair. Not wanting to be intrusive, but wanting to express concern, an acquaintance said, “ Whatever you are battling it looks like you are winning. Keep it up!” This approach expressed concern, acknowledged that something was going on, but did not intrude on the patient’s space. It left it up to the patient to share more or not. It struck me as a very kind, positive way to approach anyone who has cancer.
Depending on your relationship, humor can also help. Another patient was telling some good friends that when she saw them next she would not have hair, as she was starting chemotherapy. One friend said to her, “You are long overdue for a new hair style anyway.” The patient repeated the statement, always with a smile, many times to ease others’ discomfort with her temporary hairlessness.
There is no way that is right or wrong. In the words of Maya Angelou, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you make them feel.”
Acknowledge with respect and kindness, and you will soon forget that you were not comfortable talking about cancer.
Cryoablation is One Option for Managing Recurrent Mesothelioma
What can doctors do for patients when their mesothelioma recurs? Although many believe there are no options, recent advances have changed that. One of the options available is cryoablation. Cryoablation is a treatment that is being used for mesothelioma recurrences that involve the chest wall to help relieve pain and to improve the quality of life for mesothelioma survivors.
Cryoablation consists of controlled freezing to destroy cancer tumors in a safe and quick manner. It is sometimes used as a primary treatment for cancer of the kidney, liver, lung and prostate. Cryoablation can be used to relieve pain that the tumor might be causing by pressing on other organs.
An English physician, James Arnott, is credited with being the first to use cold to destroy tissue, as early as the 1800s. He used a combination of ice and salt to destroy unhealthy tissue. The ancient Egyptians were the first to use cold to treat swelling, showing the roots of the procedure in some form go way back.
Cryoablation is usually administered percutaneously, or through the skin, directly into the area of the diseased tissue. Through a wand-like device, a cryoprobe is inserted, and a gas is used to freeze the tissue. The tissue is then allowed to thaw. This cycle may be repeated several times during the same treatment session. Ablation occurs when the tissue has been frozen and the blood coagulates interrupting blood flow to the tissue, causing ischemia and cell death.
An April 2013 study from UCLA , “Role of percutaneous cryoablation in management of recurrent mesothelioma following lung sparing pleurectomy and decortications,” reports that for localized malignant pleural mesothelioma recurrences, cryoablation following surgery can be performed safely as an outpatient procedure with minimal morbidity, a very high efficacy rate, and improved overall survival.
Recently, the procedure is being performed in other mesothelioma centers. Ask your mesothelioma care team if this procedure is right for you. The UCLA study was done on an outpatient basis, but other institutions have patients stay one night in the hospital. The procedure is usually done under general anesthesia.
Here is another promising adaptation of an established procedure to improve the quality of life and survivorship for mesothelioma patients!
Mesothelioma Help Scholarship – Great Opportunity to Make a Difference
Once again, I was humbled and honored to be a judge for the spring Jan Egerton and Don Smitley Mesothelioma Scholarship contest. Jan was an inspiring woman who I was happy to be acquainted with and, of course, Don was my father. A scholarship memorializing these two amazing mesothelioma warriors seems only fitting.
As I read through each entry, I was astounded at the interest and compassion shown by each student. They really did an excellent job researching the topic and many stated how much they learned through the process. I gain a lot of hope in knowing that teens and young adults are becoming aware of this disease and showing a genuine interest in how they can help.
These youths are the next generation of up-and-coming professionals and philanthropists, and it will be up to them to continue the fight against mesothelioma. I find comfort in knowing that the torch will be passed to such motivated individuals.
Educating ourselves about the dangers of asbestos and mesothelioma is the first step in eradicating this cancer. It is our responsibility as a community to make sure that this is done and done well. I am extremely proud of the scholarship participants for their hard work and commitment to serving others.
I pray that you all continue on your journey to help those with mesothelioma, believing in a cure!
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