Category: Family
Contact Your Congressional Representative to Encourage Implementation of Mesothelioma Registry
In August, Congressman John Katko of New York introduced a bill into Congress to create a mesothelioma registry. This is a huge step in the fight against mesothelioma; other conditions, diseases, and types of cancers have seen advances such as improved life expectancy and better treatments due to registry implementations. Registries are extremely helpful in the terms of a rare disease like mesothelioma. Oftentimes, doctors and scientists around the country are unable to complete their research due to a lack of sample size of patients. Having a large database of information readily available can help provide these numbers.
Right now, mesothelioma does not have a registry of any kind, lagging behind other diseases and conditions.
The Mary Jo Lawyer-Spano National Mesothelioma Patient Registry Act of 2015, the full text of which can be read here, seeks to:
- Establish priorities for successful outcomes
- Develop and revise standards of care and treatment best practices for patients with mesothelioma
- Share evidence-based information between physicians across the country
- Implement benchmarks to improve care in mesothelioma clinics
- Identify centers that provide the most beneficial care to patients
The Mesothelioma Applied Research Foundation (Meso Foundation), the nonprofit 501(c)(3) organization dedicated to eradicating mesothelioma, has been at the forefront of this endeavor and has set-up an action alert through which anyone can contact their Congressional representative to request support of the bill.
In fact, according to the Meso Foundation, this bill came about as the result of its Advocacy Day in March of 2015, when one of its advocates, Meg Meccariello, met with her member of Congress, John Katko. Ms. Meccariello’s family has been greatly affected by mesothelioma. Aside from herself being a patient, she has lost her sister, Mary Jo Lawyer-Spano, and her father Charles Lawyer, to this disease. Another sister of Ms. Meccariello’s is currently also battling the disease.
The benefits of this registry would be outstanding. Please join me in contacting your Congressional Representative and asking them to co-sponsor this bill. If they already support it, thank them and let them know that you are grateful. Let’s make a difference together and continue to believe in a cure!
Go to the Action Center page at curemeso.org to send a letter.
Know more about Mesothelioma and how you can deal with it.
Mesothelioma Awareness Day Draws Mesothelioma Community Closer Together
For many people, Labor Day marks the end of summer, although the official end is not until September 21st. Life returns to its hectic pace with school, work, appointments, etc. For the mesothelioma community, however, September is the month to recognize National Mesothelioma Awareness Day. This year it is Saturday, September 26th.
This past week, I had the good fortune of meeting a patient who had been diagnosed with Stage 4 lung cancer – 9 ½ years ago. When she was diagnosed, she was told that she had six months to live. She was a non-smoker and could not understand why this was happening to her. She was in shock. She walked out of the appointment with her doctor and said that was not going to happen. She never went back to that doctor. Instead, she referred herself to a large teaching hospital that specializes in oncology.
When she told her story to her new oncologist, he pointed up to the sky to a higher power, and to her head, indicating the power of positive thinking, and said, “It is up to you – no one has a crystal ball – let’s see what happens.”
Her oncologist pointed her to clinical trials and offered a variety of treatments. And she has benefitted greatly from many treatments and medications that are now available as the result of successful clinical trials. It has not been easy, complications have left her with other medical problems, she undergoes dialysis twice a week, frequent blood tests, frequent doctor’s appointments. But, she has lived to witness many life events and family milestones that she never thought she would – graduations, weddings, grandchildren.
One thing that she does every year, at the request of her oncologist, is to speak to researchers- she puts a face to all their work. Her successful fight, because of their research, long ago put six months in the rear view mirror.
Although this patient has lung cancer, we have mesothelioma survivors who continue to battle the disease and are living well after their six month sentence has been in their rear view mirror. Like my recent patient, they sought out clinical trials, became involved in learning all they could about their disease, and kept living. Mesothelioma does not define them.
As I was thinking of this patient, it occurred to me that this is why Mesothelioma Awareness Day is so important. Having a community to support mesothelioma patients and family members through this journey with mesothelioma, sharing the progress being made with research, celebrating the success, and acknowledging the disappointments, sharing the stories of survival are all some of the purposes of the day.
On September 26th, remember all who continue to battle this aggressive cancer, all who have lost their battle, and their families, as we all pray for progress to a cure.
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
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I’m Proud to Support the Mesothelioma Applied Research Foundation
Eight months after my Dad’s diagnosis of pleural mesothelioma, my family held its first fundraiser to benefit the Mesothelioma Applied Research Foundation. They helped us so much, we felt it imperative to do what we could to say thank you. Dad was intensely involved with the planning and execution of the basket raffle that we held at our hometown’s yearly event, Dunbar Community Fest. He was sort of the ambassador that day, chatting with everyone who passed by and updating them on his progress and why we were there. He was proud to help.
Even after Dad’s passing in October of 2013, my family continues to support The Meso Foundation however we can. Working with them is an amazing way to give back and to honor the memory of my selfless father who always went above and beyond to help others. Working with others in our fundraising community inspires me. I see so many working together toward a common goal of eradicating this disease and spreading awareness and hope.
I have gotten to know amazing individuals through The Meso Foundation. We are reluctant members of a group of people who have been touched by mesothelioma in some way. Though unfortunate, we choose to rise above it and do everything possible to spare anyone else from the pain we have endured.
I am proud to be a member of The Meso Foundation’s Rising Leaders Council. We are an assembly of young people dedicated to raising funds and awareness, advocating on behalf of those still battling, those who have lost their fight with mesothelioma, and those who love them.
When entering into his clinical trial a little over two years ago, Dad told me that even though it might not help him, it may be able to help someone else. Mesothelioma took my father from me, but it did not take away his legacy of love and compassion for others. When I feel like I’m too busy to help or if it seems like it’s too much to take on, I remember him and all that he was. He pushes me to continue this endeavor.
Please consider joining me and so many others in this fight. For more information, contact the Mesothelioma Applied Research Foundation and visit their website at www.curemeso.org.
Know more about Mesothelioma and how you can deal with it.
Remembering All The Precious “Things” I Shared With My Dad
Every morning before my husband leaves for work, he gives our daughter her first bottle of the day. At night, they spend time together that has been dubbed “Daddy in the Evening.” This is their special time, it’s their “thing.” As I watch them together, I wonder what else they will do together; it makes me think back to the relationship I had with my Dad.
Dad and I had a million “things.” We had nicknames for each other that would change periodically. Every night before I went to bed, he would carry me to his closet and help him pick out his shirt for the next day at work.
Perhaps the biggest one, and the one most famous in our family, was Saturday morning. It was a well-known fact that that was our time. My Mom would work three Saturdays a month, and we loved that (sorry, Mom!). We would get up early, head out to breakfast, and then the day was ours. So many of my favorite memories with Dad are from those lazy mornings spent driving around, talking about anything and everything. Once my husband came along, he was blessed to take part in these times as well. I think Dad loved carrying on our tradition and sharing it with the newest member of our family.
While I would give anything for one more Saturday morning with Dad, I realize how fortunate I am to have had a father willing and happy to spend that time with me. I’m proud to say that my little girl will have the same type of Dad, loving her unconditionally and making the littlest thing into the boldest memory.
Even though I still struggle with the fact that my Dad is gone, I realize that I’ll always have our “things;” the littlest things that made the biggest difference.
Advocacy for the Mesothelioma Community May Evolve Over Time
Unfortunately, there are countless members of the mesothelioma community, and our numbers are growing by the day. Each one of us advocates for those affected by this disease in our own way. Some take a more “in your face” approach, some quietly talk to their family and friends, and still others are somewhere in between. No matter where you find yourself, your efforts are appreciated.
For my family, a lot of the level of involvement that we had at any particular time, depended on where Dad was in his treatment process and his overall health. As much as we wanted to be “all in” all of the time, it just wasn’t possible. Our number one priority had to be taking care of my father, while praying for those who were able to be more active at that point.
Emotions can play a big role in someone’s level of involvement and willingness to share their story. For example, when we were grieving my Dad’s loss, I sort of stayed on the outskirts of things for a bit. The feelings of sadness and pain were too raw and I needed some time to sort through everything before I felt ready to dive back in. For others, these feelings may be a catalyst to act and act now. Everyone is different and will respond in the way they feel best for them.
It’s ok to choose your own way to advocate. Even our silent members are an important part of this community. We all have a shared bond that we wish we didn’t, but we have helped each other through the awful highs and lows that are part and parcel with this cancer. We all have our own story to share in whichever way we choose.
Free Mesothelioma Patient & Treatment Guide
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