Author: Joseph Belluck
Heading to the Mountains Allowed Dad to Escape Mesothelioma
I say it all the time, my Dad was so much more than a disease. He should be defined for being an incredible husband, father, brother, and friend. He should be remembered for his character and sense of humor, not as someone who had mesothelioma. Dad never wanted the burden of being ill for himself or anyone else; he wanted to be Donnie, not Donnie who had cancer.
Mesothelioma did not change who my father was. It changed his ability physically, but his personality and values remained unchanged. Most of the time, he just wanted to be away from everything that reminded him of his cancer.
Dad loved spending time in the mountains, and this is where he would go when he wanted to get away from it all. We would take rides, go out for dinner, and stop at scenic overlooks to just take some time to relax. He loved playing bluegrass music with his band; it seemed like when he was on stage, he could let go and just be himself, smiling and singing.
Spending time at home with his family was always high on his priority list. He loved getting lost in old stories and making new memories. But he wasn’t afraid to say that he didn’t want to talk about mesothelioma anymore if it were brought up in conversation. Dad was determined not to let this disease run his life. Life is so much more than one setback, it is the sum of all that you are. Dad’s sum total was a beautiful life and he is loved and missed every single day.
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Ask Jennifer: How to Manage Mesothelioma’s Financial Burden?
Health care is expensive; being treated for mesothelioma is daunting enough without having to consider the financial strain. A lot of meso patients travel for treatment, adding additional expenses to the already large number looming overhead. Sometimes, I fear that the cost may impact someone’s decision to receive the best care available.
When my Dad was diagnosed with pleural mesothelioma, we started on a journey in many ways. One of these journeys was traveling to New York City, eventually making it our second home. Hotel employees knew us by name, servers at restaurants we frequented would talk about seeing friends of ours who had just been there – who were also in NYC for treatment. Life in NYC is expensive as anyone can imagine, but the cost was well worth the benefit for my father.
Starting our trips to NYC, we weren’t sure how we would handle it. Hotel accommodations and meals were a great expense and we were grateful for the gifts and donations that generous family members and friends provided. When Dad needed to stay in the city for six weeks, we were blessed to find that Dad met the criteria to stay at the American Cancer Society’s Hope Lodge; they provided a wonderful place for Mom and Dad at no charge.
Figuring out everything that goes along with a mesothelioma diagnosis can be a huge task, but there are people who can help you. Contact the Mesothelioma Applied Research Foundation; they were an unbelievable help to my family. They can provide you with information that can change things for the better.
When considering the cost of cancer care, don’t count out any treatment because of monetary implications. It is well worth researching aid and help that you may be able to receive. After all, you or your loved one’s health is worth more than any dollar amount!
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Mesothelioma Nurses Are Appreciated
There has been a lot of talk in the news lately about the importance of nurses. From personal experience, I have to say that my father’s nurses were an integral part of his mesothelioma treatment and recovery. We cannot thank them enough.
At every stage of Dad’s journey, he needed help from the medical community. There were so many nurses who helped him along the way. From helping him navigate the hallways on walks after procedures, getting him a snack, taking vitals and blood, to just stopping by to say hello on their way home, they were amazing. These nurses went above and beyond their call of duty and treated Dad like a friend, not a medical record number.
The long hours and hard work that these men and women endure are commendable and should not go unnoticed. Working with mesothelioma patients and their families can be trying on every level, as it is both a physical and emotional undertaking. So, on behalf of my family and others in the mesothelioma community, thank you for helping us through the most trying times, and bringing a beautiful balance of professionalism and friendship to our situations.
To all the nurses out there – you are appreciated!
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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.
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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.
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Free Mesothelioma Patient & Treatment Guide
We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.
It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
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