Mesothelioma Help Cancer News
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 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!
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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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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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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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