Month: December 2013
Don Smitley’s Love of Bluegrass Helped Him Forget About Mesothelioma
My Dad was a musician. He always said he “played at” the guitar, just chording, but wow, could he sing! Music made a huge difference in Dad’s life. It allowed him a sort of escape to a place where he could let go and be lost in the bluegrass music that he loved so much.
During Dad’s last few months, he wasn’t able to play very much as he was in and out of the hospital. The last time he went to a bluegrass event was over Labor Day weekend. He traveled by himself to meet his band mates up in the beautiful Pennsylvania mountains. I remember being so nervous about him going alone, but he assured me that he was fine. When he got home, he called and told me that he was tired, but that he had had a wonderful time. I could tell by the sound of his voice that he was beaming.
Dad and his band mates sort of became a “band of brothers,” if you will. They were very close and supported Dad throughout his battle with mesothelioma. Although his voice has been silenced here on earth, it is so wonderful to have the videos and CDs of his performances. These are things that I will treasure forever.
My father always believed in making the best of every situation, and music really helped him to do that. Singing about “Rocky Top,” which he dubbed his theme song, Gospel, or other carefree subjects, made him feel better in mind, body, and soul. I was always so proud to watch him play and sing. You could tell that he was truly happy and content, as he was with everything in his life.
If I can offer one piece of advice to those suffering with mesothelioma, it would be to do what makes you happy and try to forget about the disease. Don’t let mesothelioma take your happiness from you; let your happiness take away the mesothelioma.
Comparing Your Mesothelioma with Another Patient’s May Not be Helpful
On Black Friday a lot of people shop, but only after they study the ads and plan out carefully where they are going and what they will buy. For some, it is a fun tradition that kicks off the start of their holiday shopping. For others, it is the comparison shopping and the hunt of a bargain that drives them. Mesothelioma patients often prepare for their treatment in much the same way – studying articles, stories and their treatment options. However, many also compare their mesothelioma with other patients.
Recently, I heard two mesothelioma patients discussing their experiences. Knowing that both had different types of mesothelioma, had different therapy, and were at different stages in their journey, I was surprised at what they had taken away from their experience so far. It is understandable that people want to compare how they are progressing with someone else that also has mesothelioma, but it is important to keep in mind that everyone’s case is different.
There are many studies that support the importance of support groups in dealing with life-threatening diseases. The groups can provide a lifeline and much needed hope to the patient, family, and caregivers during this time. Many survivors of mesothelioma have had more of a positive impact on patients and families than just about anything or anyone else.
It is important to remember that mesothelioma comes in different sizes and shapes. The location of the primary site of the tumor can be pleural (lung), the most common making up around 85% of malignant mesotheliomas; peritoneal (abdomen) comprising around 5% of tumors; and pericardial and testicular, both very rare, making up the other potential cancer sites. Once the location, is identified the type is tested for either epithelial, sarcomatoid or mixed. Once identified, the disease is staged by biopsy of the surrounding lymph nodes. From there the results are compiled and the best treatment is suggested. Some possibilities include chemotherapy, surgery, radiation, complementary therapy, or alternative therapy.
Like the bargains on Black Friday, remember that your specific mesothelioma is different than someone else’s, and that different people respond differently to treatments. Just because a treatment modality did not work for someone else, doesn’t mean it won’t work for you. Be positive and trust your treatment team.
Mesothelioma is no bargain. But neither is advice that is not accurate. Take a lesson from the expert shoppers, compare and study all the facts about what you might accept as fact, and hunt for information from reliable sources.
Americans Urged to Contact Congress to Forward Mesothelioma Research
President Obama kicked off 2013 by signing into law the Recalcitrant Cancer Research Act. The legislation establishes a research framework within the National Cancer Institute to guide research efforts for recalcitrant cancers, or those with high mortality rates. Now, it is time for the NCI to develop the frameworks, and the Mesothelioma Applied Research Foundation is asking Americans to rally around U.S. Congresswomen Betty McCollum (D-MN) and Chellie Pingree (D-ME) in urging all members of Congress to push the NCI to include mesothelioma in the frameworks.
McCollum and Pingree sent a “Dear Colleague” letter to the members of the U.S. House of Representatives asking them to join them in urging Dr. Harold Varmus, Director of NCI, to guide research efforts for the rare, asbestos-caused mesothelioma.
A recalcitrant cancer is a cancer with a five-year relative survival rate below 50 percent and one that has not seen “substantial progress in the diagnosis or treatment.” Mesothelioma meets the act’s definition for both of these requirements: the cancer has just a five to ten percent five-year survival rate, and there is only one FDA-approved treatment for the cancer. There is no cure for mesothelioma.
“Congresswomen McCollum and Pingree are leading a very important effort for everyone affected by mesothelioma by encouraging the National Cancer Institute to create a scientific framework to progress mesothelioma research,” said Meso Foundation’s executive director and nurse practitioner, Mary Hesdorffer in a press release applauding the Congresswomen’s action.
The Mesothelioma Applied Research Foundation, a national organization dedicated to eradicating mesothelioma and the suffering it causes by funding the highest quality mesothelioma research, has long advocated the U.S. government for increased focus on mesothelioma research.
Take action by urging your Congress member to progress mesothelioma research. Visit the Mesothelioma Applied Research Foundation’s web site for more information.
Sources :
- Mary Hesdorffer
http://blog.curemeso.org/meso-foundation-congratulates-representative-betty-mccollums-efforts-advance-mesothelioma-research - Recalcitrant Cancer Research Act
http://www.gop.gov/bill/h-r-733-recalcitrant-cancer-research-act-of-2012-as-amended
No Regrets for Family Who Lost Loved One to Mesothelioma
The natural human reaction to losing a loved one is to start asking “what if?” You start to have regrets. You wonder why you didn’t stay five more minutes during a visit, why you hung up that phone call, or what you could have done to protect the one you lost. Living with regret is something that can have a negative effect on every aspect of your life. Try to remember that someone that loved you would never want you to live with that awful feeling.
Life has a funny way about it. It keeps going on for some when it ends on earth for others. Dad had been diagnosed for one year and eight and a half months when he passed. One year and eight months to the day after his surgery. Looking back, I know that we did everything that we could to help him fight mesothelioma.
My parents traveled constantly for surgery, doctor appointments, a clinical trial, and radiation. They were so hopeful with every good result. We researched and read as much as we could about new treatment options, side effects, and others who were also battling this horrific disease.
Losing Dad was the most heartbreaking event of my life, but we can take comfort in knowing that we literally did everything that we could to give him the best quality of life possible while he was sick. Dad promised me that he would never give up, and he didn’t. He is an inspiration to me and I am so proud to have the opportunity to share his story with so many. His faith is what carried him through, and has allowed us to carry on knowing that we gave it our best. My prayer is that we may all find comfort in our journeys, no matter what they may be.
Mesothelioma Specialists Offer Best Care, According to Nurse Lisa Hyde-Barrett
After last week’s Thanksgiving holiday, I am going to write about being thankful. I am sure it does not take long for all of us to come up with a few reasons to be grateful. Of course, I am always thankful for my family, my friends, and my health. I recently had something happen to me that was not so pleasant, and I was on the other side of the fence. I was not the healthcare professional, I was the patient.
It gave me new insight into just how people must feel when they are dealing with a new medical condition. Most often, people feel out of control and uninformed when they or their loved ones are sick. Perhaps, even powerless. These feelings can be scary and overwhelming. But you don’t have to feel that way.
I work in a big facility that is a world renowned mesothelioma center. Oftentimes people make comments about how aggressive we are as a medical facility. Yes, we are aggressive. We are like other facilities around the United States that are vigilant in fighting this disease. We don’t give up easily, and we are in it for the fight.
There are so many mesothelioma patients who may not think about going to a specialist or they think their primary care physician can give them the best care. They are right, they will get good care. But they may not receive the newest, cutting-edge care specialists can offer who work with mesothelioma patients on a daily basis. When things are not going so well, patients can be thankful that this group of physicians nurses and scientists can brainstorm together.
I always tell patients who come to our facility that one thing is for sure – when you go home you will know that there was no stone left unturned. This group of professionals offers every bit of treatment they can possibly offer. Some journeys are long and stressful regardless of the care you receive. I just recently visited with a patient from three and one-half years ago. Yes, he does have mesothelioma, but he is up every day thanking his lucky stars that he has another day with his family. Of course, he has his aches and complaints, as we all do. Currently, he is receiving radiation and he has started to feel relief. I know every situation is different, and not all end up so favorably. I sure am grateful that I am associated with a top mesothelioma center that is aggressive and in it for the fight.
If you read this, please take yourself to a specialist who knows mesothelioma, and can possibly make a difference. I cannot tell you how many people I cared for that they were told to get their affairs in order, yet here they are living – three, five, even 10 years after their original diagnosis. One thing is for sure – this is your life and you deserve the best care. If you think I cannot travel because it is too expensive or you are too sick, there are avenues to help you. Just contact me and let me talk with you.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, feel free to contact us.
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