Category: Nurse’s Corner
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 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.
Mesothelioma Nurse Explains The Need for a Caregiving Team
Having mesothelioma can be devastating and overwhelming. It makes your mind and your loved ones’ minds spin. There are a thousand questions you have, both answered and unanswered. I have answered many of these questions, but over the years I have asked my share of questions as well. One of the most important things I have learned from the patients and their families, is that a strong care team is vital to recovery.
I have watched each case, and I have noted what seems to work and what doesn’t always work. I would say that having a strong support system is definitely key to easing the stress of the mesothelioma patient. You should not only designate a primary caregiver, but you should also select other friends and family members who can serve as backup.
You may think that you and your significant other can handle what comes along with mesothelioma, but that is not always the case. Things can go wrong, or at least not work out exactly how you figured they would. It happens more times than not. If possible, you should have people around you who are committed to helping you with all of your loved one’s healthcare needs.
Who can be there for you at the drop of a hat if you need a ride to a chemotherapy appointment, or if you need to see a doctor when you are not feeling well? In the best possible situation, you could have three to four people who have a flexible schedule and are able to commit to being available with little notice.
Recently a middle-aged patient and his wife came in for treatment. Unfortunately, things have not gone according to plan. The patient’s stay in the hospital has been extended, and feels like forever to his wife. This unexpected development has left her frightened, alone, and far from any other support system that she has. Her reactions have taken a toll on her husband’s emotional well being, and have challenged the medical professions who are caring for him.
Her fear and frustration have become crippling to her. She is the primary support for her husband, but she has little, if any, support for herself.
It is ok to be the caregiver and to acknowledge the need of time for yourself. There are support staff within any large medical institution who can offer you support. They can be helpful and are great sounding boards, are non-judgmental and they can see your unique situation from a different perspective.
After a rough few days the wife agreed to call her sister to come and help her, taking all of the responsibility off her shoulders, and sharing it. A true sign that strength is in numbers!
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.
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].
Collaboration Key to Breakthroughs in Mesothelioma Treatment
As we celebrate our freedom as a country, we also celebrate the freedom we have with our medical choices. Twenty years ago, if you were diagnosed with mesothelioma, you were told to go home and get your affairs in order. Before the internet was commonplace, before mesothelioma academic research programs were established, your choices were limited. Twenty years ago there were no dedicated mesothelioma centers; no Mesothelioma Applied Research Foundation.
Now, we live in a time where researchers have dedicated their professional lives to improving the treatment and to creating breakthroughs for a cure for mesothelioma. Some of the recent news of promising clinical trials and research is indicative of how far the war against mesothelioma has come.
Across the country and throughout the world there is collaboration among researchers, clinical trials, and professional organizations, working together to advance the cause. When new discoveries are revealed it is often through this collaboration, and through multi-centered clinical trials that they are able to bring potential new drugs to mesothelioma patients.
One example of international cooperation that hopefully will lead to lengthening and improving the lives of patients diagnosed with mesothelioma is the COMMAND study. The study is sponsored by Verastem, a clinical stage biopharmaceutical company. The focus of Verastem is on the discovery and development of drugs to treat cancer by the targeted killing of cancer stem cells.
It is thought that cancer stem cells are an underlying cause of tumor recurrence and metastasis. The study is using the drug VS-6063 with pleural mesothelioma patients as part of a clinical trial. The clinical trial is currently listed as a phase 2, randomized, double-blind placebo, controlled, multicenter study. It is available in 67 study locations across the world. For more information on this study see ClinicalTrials.gov.
Continued co-operation will hopefully lead to a cure and freedom worldwide from this devastating disease.
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.
Free Mesothelioma Patient & Treatment Guide
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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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