Month: September 2015
Mesothelioma Nurse Shares Her Passion for Her Job
Throughout the world there are nurses on the frontline of health care doing many jobs that many have not ever considered doing. There are 3.4 million Registered Nurses in the United States – one in a hundred people in the U.S. are nurses. For 13 years, RNs have been named number one as the most respected profession. Nurses are women and men, we come in all sizes, ages, colors, nationalities. We work long hours doing things that are far from glamorous.
I have been a nurse for many, many years, and often I am asked, “What do nurses do?” When my children were growing up, it was a question they would ask. When they were young and I was working nights, I would often bring home donuts, so they thought I had gone out early to get the donuts. As they grew up, they stopped in one day when I was working in the SICU, I happened to be assigned to the first room, “Ah,” my son said, “you are like the Walmart greeter!”
A couple of years ago my husband was critically ill with what turned out to be a tick-borne disease called anaplasma. As one of my daughters and I watched, his nurse in the Medical Intensive Care Unit seamlessly worked on him, hung fluids, suctioned him, monitored his vital signs, titrated life saving medications, and talked to us, all the time as she prepared him for a CAT scan. When we left that evening, my daughter, a successful computer software professional, turned to me and said, “I could never be a nurse, she never stopped working for the last four hours, she was toiling over someone she doesn’t even know. She never once complained or took a break. I am exhausted from just watching her.”
This month, Kelley Johnson, RN, a contestant in the Miss America pageant, expressed her passion for nursing in the talent portion of the contest. It was a poignant, memorable, from-the-heart monologue. She was expressing what every nurse feels: the satisfaction of connecting, caring, touching another person.
Members of the TV show The View, commented on her “costume,” her “MD’S stethoscope”, and found the monologue, “hilarious,” “she was reading her e-mails.” After the “apology” was issued, another cast member suggested that the nurses “listen more carefully.”
Message given and received. I, and I suspect many other nurses, will not be watching The View again, but I will be buying Eggland’s Best eggs and Johnson & Johnson products, as they have both pulled their advertisement support of the show.
When the anger and disappointment that this incident has created passes, hopefully more people will know what nurses do, and what a great job it is for those lucky enough to be blessed with the passion for it.
In a society that often confuses success with the amount of money earned, or by becoming a celebrity for one thing or another, or by expressing our opinions on a talk show, we are reminded that the Kelley Johnson’s of the younger generation are our bright lights.
Maya Angelou said, “Success is liking yourself, liking what you do, and liking how you do it.” Kelley Johnson is a success and a reminder to us all – nurses are not on TV, are not famous, but most of America respects us.
And that is the take-away in this controversy – and the panelists on The View now realize nurses are respected.
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!
Know more about Mesothelioma and how you can deal with it.
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].
Know more about Mesothelioma and how you can deal with it.
Paddling the Hudson River to Raise Awareness and Funds for Mesothelioma
Attorney Joseph W. Belluck of the New York law firm of Belluck & Fox, and his son, William, took to the Hudson River and kayaked in the Kayaking4Meso event, held September 12 in Stillwater, NY. The event, in its fifth year, is held to raise awareness, and funds, in the fight against mesothelioma, an aggressive cancer caused by asbestos exposure. Belluck & Fox, LLP has sponsored the event, planned in conjunction with National Mesothelioma Awareness Day held Sept. 26, every year.
“Belluck & Fox, LLP has been a sponsor of the event since its inception and we are proud to be able to help raise money for mesothelioma research,” said Belluck. “There are several other law firms who sponsor the event but we are the only firm that also shows up to kayak.”
The event grew out of a father’s love of his daughter who was diagnosed with peritoneal mesothelioma as a teenager and was given just twelve months to live. Mark Wells, whose daughter, Linda, was diagnosed with peritoneal mesothelioma at age 16, organizes the annual Kayaking4Meso event to raise awareness and Money for Mesothelioma Research.
“Linda is my inspiration for doing what I do,” said Wells in an email to Mesothelioma Help. “Realizing there was no cure, I figured the next best thing to do was to raise awareness and money for research.”
Expert Insight
Mark Wells, Kayaking4Meso Organizer
“Don’t ever give up hope. Research is going on every day and new trials are available often. I will continue to raise awareness and money for research.”
Peritoneal mesothelioma is a form of cancer that is almost always caused by asbestos exposure and affects the lining of the abdomen. While there are close to 3,000 cases of all forms of mesothelioma diagnosed in the U.S. each year, less than 10% of those are peritoneal. The cancer, which is often associated with former industrial workers who were exposed to asbestos decades ago, is virtually unheard of among young adults.
Linda is the youngest person Wells knows who has been diagnosed with mesothelioma. She has battled the disease for “almost half her life and is now one of the longest survivors I know,” said Wells. Linda has lived with the disease for 13 years.
“She is doing as well as can be expected for what she’s been thru,” Wells added.
Raising Money to Find a Mesothelioma Cure
In 2011, Mark Wells and two friends paddled from Schuylerville to Mechanicville. The trio kayaked about 16 miles through locks 4 and 3. Five years later, over 150 boaters lined up to kayak down the Hudson River from Admiral’s Marina in Stillwater thru Mechanicville, ending at Lighthouse Park in Halfmoon. The eight mile paddle took the group thru Locks 4, 3 and 2 during the 3.5 hour excursion.
“This year was especially rewarding to see over 150 kayakers come out to attend and support our cause, including Joe Belluck himself,” Wells said. “Our biggest event ever and Joe has been a part of it every year. I think his commitment to help us from the beginning inspired me into making this a successful event,” said Wells. “It’s made a huge difference to me and the success of our event.”
Expert Insight
“This is symbolic of what makes our law firm different from the other lawyers that represent people with mesothelioma – whether it’s participating in an event like this or representing one of our clients – we fully commit our time and energy.”
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The money raised during the event goes to the Mesothelioma Applied Research Foundation. The organization is the only non-profit organization dedicated to ending mesothelioma and the suffering caused by it, according to the Meso Foundation’s website.
Wells said the Meso Foundation has helped his and many other families with knowledge and advocacy by directing them to doctors, hospitals, and clinical trials.
Wells said the events have raised more than $40,000 to date to aid in research to find a cure.
“I think the thing that impacts me most is the meso family that we have created with this event, with six meso survivors attending and over 30 family members,” said Wells. “I think it means a lot to all us to get together to support each other.”
Asbestos Along the Hudson River
Belluck, a mesothelioma lawyer who has been advocating for mesothelioma patients and their families for over 15 years, finds the irony in the event organized to raise money to fight an asbestos-caused disease. He fights for compensation for victims of asbestos-related diseases, he says, and the route took the paddlers through three of the Champlain Canal Locks that allowed so many of the companies that the firm’s clients worked at to prosper.
“This stretch of the Hudson north of Albany is beautiful, the leaves have begun to turn and it’s a gorgeous fall day,” Belluck said of last Saturday’s event. “But, we also paddled past some of the factories where our clients worked, and one area of the Hudson where the soil is being dredged and renewed from the toxic substances that not only injured our clients but also poisoned this beautiful river. And perhaps that is a good metaphor for why we do this work.”
Mesothelioma is an asbestos-related cancer that is usually diagnosed in older men – after spending years as trade workers such as insulators, plumbers and pipefitters, electricians and sheet metal workers. With an extended incubation period, it is often not diagnosed for decades after asbestos exposure. Approximately 2,500 to 3,000 people in the United States are diagnosed with mesothelioma each year.
Sources :
- Kayaking4Meso
http://www.kayaking4meso.org - Meso Foundation’s website
http://www.curemeso.org/site/c.duIWJfNQKiL8G/b.8578185/k.6D0E/Meso_Foundation_Symposium.htm
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