Category: Mesothelioma
Each Mesothelioma Patient’s Journey is Unique
The mesothelioma journey is as individualized as each patient’s tumor. Science has come to this revelation in the past decade regarding mesothelioma- everyone’s tumor is as individualized as their fingerprints. Just like each of us has a unique fingerprint, each patient’s journey with mesothelioma is also unique. Patients and loved ones go through different emotional stages at different times.
Dr. Elisabeth Kubler-Ross published a book in 1969, “On Death and Dying,” that started discussions on how people handle personal trauma and emotional upset. She identified five stages – denial, anger, bargaining, depression, acceptance. These are not rigid categories, and individual patterns vary as to when, if ever, a person facing a serious illness will go through each of the stages.
I recently saw a gentleman who was 60 years old who had just had a pleurectomy. During his hospitalization he was quiet, anxious and appeared frustrated overall with his diagnosis, staff, length of stay, and just about everything that he encountered. After he was discharged, I visited him at a temporary housing apartment, and I was pleasantly surprised – he welcomed me into his place and acknowledged that he remembered me. I was so happy to see him and to see how well he was progressing.
His journey with mesothelioma had taken a turn, and he had moved on to another stage of healing. He had a bounce in his step, and his attitude was of gratuity and hope. He expressed that he too was surprised at how well he felt, and how far he had come from the dark days in the hospital. He was knowledgeable about his medications, fluid restriction, and dietary restrictions. He spoke about his length of stay in Boston and was completely okay with whatever he had to do. He was feeling better and he was back in a good place psychologically. I could not have imagined that this content, happy man was the same man who I encountered in the hospital.
Like researchers have realized that every mesothelioma tumor is individual and not like any other, the emotional journey is also an individual, unique, journey. As a health care worker, it is my honor to accompany patients and their families on the journey, during rough times as well as calm times.
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Keeping Advocacy Alive After Loss of Loved One to Mesothelioma
Losing someone to mesothelioma changes your life in a million ways. One way, in particular for me, was how my family looked at itself without Dad. Dad was the steady, kind, thoughtful presence who always put others before himself. Trying to redefine who we are as a unit was a daunting task; I kept trying to picture life going on without him and was unsuccessful.
In the days following Dad’s death, I felt like I was walking through a fog. I knew that it was real, I knew that we were planning my father’s funeral, but I still couldn’t face it. People came to the house and brought meals, cards, and anything they thought we may need; their generosity seemed boundless, but I couldn’t bring myself to properly thank them. I tried to smile when people greeted me, but all I could see was the sorrow in their eyes; they had lost a friend as well.
I was given a lot of encouragement from people who truly didn’t know what to say. I felt as though it was hard for people to see me; in a way, it probably was. What words can befit the loss of a parent? Still, I appreciated their outpouring of love and support, even though I wasn’t sure I wanted to accept it. I felt like if I did, it would make everything more real.
I will never forget one of my dear friends, who also sadly lost a parent, coming to the viewing. She told me that she wasn’t going to sugar-coat anything for me and that things were going to be terribly difficult. The change in my life would impact me at every moment of every day. She told me that I would miss my Dad at both major life events and during normal happenings but that she would be there for me, as would all my friends and family.
Our conversation has stuck with me, and I honestly think that speaking with her that night made me realize that I had to consent to this path that God was leading my family down. Hiding from the fact that my Dad had passed away would hold me back from living my life as fully as I could, and from working to help others in the mesothelioma community.
Allowing something positive to come from my Dad’s illness is exactly what he would have wanted. He would have wanted his family to continue to work to be a positive influence in any way we were able and to support this cause as much as possible.
For my family, the best way to honor Dad is to share his story of faith with others. I feel truly blessed to have this platform to do just that. Thank you for listening to our story.
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VA Secretary Wants to Use Choice Program Funds for Budget Shortfall
The Department of Veterans Affairs is facing a $2.6 billion financial shortfall that it says is caused by increased veteran demand for healthcare. Deputy VA Secretary Sloan Gibson plans to ask Congress for permission to use money from the Veterans Choice program to cover the funding gap, a measure that could hurt veterans with mesothelioma who seek treatment at a non-VA care facility.
The Veterans Choice program is the centerpiece of a $16.3 billion VA reform law approved by Congress last year in response to a VA scandal over long patient wait times and falsified records. Of the $16.3 billion, $10 billion was put into a fund that allows veterans who are unable to secure an appointment at a VA medical facility within 30 days or who live more than 40 miles from the nearest VA facility to seek care at a private hospital.
More recently Congress amended the legislation to define the 40-mile rule as actual driving distance, not “as the crow flies” distance. And the House is currently considering another amendment to the Choice program that would allow veterans living within 40 miles of a VA facility to seek care at a private facility if their local VA hospital does not offer the specific services they require, such as mental health or cancer treatment services. This would be very beneficial to veterans with mesothelioma who are only able to receive the specialized care they need at a handful of VA mesothelioma centers as well as those unable to get an appointment with a VA oncologist within 30 days.
Secretary Gibson, according to The Columbus Dispatch, says that the program got off to a rocky start, but has expanded significantly in recent months and is likely to expand even more. The ability of the program to meet the health needs of veterans with private care, however, whether they live in rural areas or simply cannot secure a timely appointment, would be hampered by the appropriation of $2.6 billion to other VA health care costs.
That’s more than one-quarter of the entire budget of the Choice program, which runs through August 2017 or until the $10 billion is used up. Using up $2.6 billion of that budget to adjust for what some are calling yet another example of VA mismanagement doesn’t add up for veterans helped by the Choice program.
While Gibson attributes the budget shortfall to increased demand at VA medical facilities—which he says has increased by 7 million appointments in the past year—others have been more critical of the VA.
“The VA’s problem isn’t funding—it’s outright failure,” said House Speaker John Boehner at a news conference. “Absolute failure to take care of our veterans.”
Wait times longer than 30 days for VA appointments have gone up by 50 percent in the last year, a clear sign that, whether due to bureaucratic missteps or more veterans seeking care, the Choice program is needed now more than ever.
Rep. Jeff Miller, chairman of the Veterans Affairs Committee, says that he is prepared to give the VA Choice program funds to pay for daily health care expenses, according to Stars and Stripes, but in return will demand changes to the way the VA manages its finances.
Veterans who need help paying for mesothelioma medical services at a non-VA facility are encouraged to contact Belluck & Fox for a free case review. A lawsuit against the companies responsible for your asbestos exposure could provide funds for medical care, lost wages and other expenses related to your illness.
Veterans may also be available for monthly compensation from the VA. Use our VA Benefit Tool to find out whether you qualify.
Sources
- The Columbus Dispatch
https://www.dispatch.com/content/stories/national_world/2015/06/25/0625-va-budget-shortfall.html - Stars and Stripes
https://www.stripes.com/news/veterans/house-panel-supports-closing-va-s-2-6-billion-funding-gap-1.354590
Holding Dad Close to My Heart on Father’s Day
Father’s day is just around the corner, and this year’s is especially bittersweet for me. As I continue to mourn the loss of my own Dad, this year marks the first as a father for my husband. As hard as it is to balance these emotions, it is important to continue to celebrate those who are still with us and remember those we have said goodbye to.
2013 was the last Father’s day I got to spend with my Dad. He was in New York City with my Mom, staying at the Hope Lodge. He was nearing the end of his radiation treatment at Mount Sinai Hospital, and we had planned to drive in that Monday and bring him back home Tuesday. After a long, almost seven week, stay there, Dad was feeling the effects of the treatment and missing home terribly. On Father’s Day morning, my husband and I drove into the city and surprised him. I will never forget the look on his face.
When he came down to the family area of the Hope Lodge, he was surprised and happy to see us. You could see in his eyes the love that he had for us, coupled with weakness and fatigue. The residual effects of the radiation were written on his face, hidden behind the joy of being with his family on such a special day.
Dad didn’t feel up to going out that day, so we spent it together playing games, talking about going home, and ordering burgers in. It was a precious time for us all. Knowing that Dad’s treatment was almost over gave us a renewed hope, but we were all worse for wear. Dad from the treatment itself, Mom from being a full time caregiver, and Mike and I from making bi-weekly trips to NYC to be with them. Those trips were worth every second.
I always felt that my Dad deserved to have Father’s day every day. He was selfless, loving, faithful, and kind; I see these traits embodied in my husband as I watch him with our baby daughter. I know that Dad would be so proud of him and want to celebrate him as well. While my family shares this beautiful day together, I will remember my Dad and all that he was, and still is, to me. The beautiful bond between father and child cannot be undone; I will always love my Dad and forever be his little girl.
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EWG Analysis: Asbestos Kills 12,000-15,000 Americans per Year
A new analysis by the Environmental Working Group (EWG) finds that asbestos kills significantly more Americans each year than previously estimated—and the actual asbestos death toll may be much higher.
Using data from the Centers for Disease Control and Prevention (CDC) database, EWG calculated that from 1993 to 2013, 189,000 to 221,000 people (12,000 to 15,000 per year) died from mesothelioma, lung cancer, and asbestosis in the United States.
EWG says that public records of U.S. asbestos-related deaths are imprecise, however, and that their estimate is conservative.
“As shocking as these figures are, they may be too low,” said epidemiologist and former assistant Surgeon General Dr. Richard Lemen in a press release from EWG Action Fund.
http://www.prweb.com/recentnews
“The report did not estimate deaths from the other-asbestos-related diseases. Furthermore, some studies suggest even higher lung cancer rates in asbestos-exposed workers,” said Lemen.
According to EWG, 39,870 American died from mesothelioma, an incurable cancer caused exclusively by asbestos exposure, from 1999 to 2013. Over the same period, EWG estimates that 20,317 Americans died from asbestosis, a type of lung scarring caused by asbestos fibers, while as many as 159,480 died from asbestos-related lung cancer.
In addition to deaths from these causes, it is believed that asbestos exposure can also cause cancers of the larynx, pharynx, stomach, colon, ovaries, and rectum. An older study by EWG that includes asbestos-related gastrointestinal cancer puts the number of annual U.S. asbestos deaths at around 10,000.
U.S. asbestos use peaked in the 1970s and the carcinogenic mineral fiber is no longer mined in this country, but it continues to be imported and used in a wide range of products. An EWG analysis of U.S. port records indicates that at least 8 million pounds of raw asbestos have arrived here since 2006.
EWG’s figures indicate that there was no apparent decline in asbestos deaths from 1999 to 2013. There were 2,481 mesothelioma deaths in 1999 compared to 2,686 in 2013 and a high of 2,874 in 2012. Asbestosis deaths were virtually identical in 1999 and 2013 (1,258 vs. 1,229). Both EWG’s lower and higher estimate of lung cancer deaths show increases from 1999 to 2013.
This can be attributed to the long latency period of many asbestos diseases. Mesothelioma, for example, can take 15-50 years or more to develop from the time of initial asbestos exposure.
Given the lag between asbestos exposure and disease onset, asbestos disease rates will likely remain high for years to come. One expert estimates that within the next three decades 300,000 Americans will die from asbestos.
“The only way to see the numbers of asbestos-related fatalities significantly decline among Americans is for our elected leaders to adopt an outright ban on the deadly substance,” said Sonya Lunder, author of the EWG report, “Asbestos kills 12,000-15,000 people per year in the U.S.”
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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