Mesothelioma Help Cancer News
Open Letter to Mesothelioma Patients and Families: Keep the Faith
Dear Family and Friends,
With an unpredictable disease like mesothelioma, there will be many ups and downs. Sometimes, the ups are so high that it doesn’t seem like mesothelioma was ever a part of our lives. Other times, the downs are so low that we don’t see how anyone could ever come back from them.
That’s the tricky thing about life with or without mesothelioma. We never know what will happen in the future. It’s hard, but it’s best to take every day as it comes. If we spend too much time dwelling on those “what-ifs”, we will miss out on all the wonderful things happening right now!
Uncertainty is a precarious thing; there are two ways to react to it. One, we can focus on the possibility of a negative outcome. Two, we can recognize that we have no idea what will happen and pray for the best while enjoying our time here on earth.
One of my favorite Saints, Padre Pio, said, “Pray, hope, and don’t worry. Worry is useless. God is merciful and will hear your prayer.” Try to follow his advice. Pray for your loved one. Hope for the best outcome and think positively. And lastly, try your best not to worry. This might seem easier said than done, but it truly gets you nowhere and can only cause more stress to you and those around you. God will hear your prayers as He always does and will take care of everything according to His perfect plan.
My prayers are with you always,
Jen
Mesothelioma Patients and Their Families are Their Own Best Advocates
Many times and in many situations in life, you are your biggest advocate. No one knows you better. No one understands your needs more clearly. In a fight with mesothelioma, the patient themselves with their loved ones are their greatest, most aggressive supporters.
When facing a diagnosis with any kind of illness, it’s important to recognize the importance of knowledge. The more you learn about the disease, the more equipped you are to battle it effectively. Doctors and medical staff will present you with a lot of information and the latest research and statistics. Figuring out what to do with it is up to you.
It’s easy to get overwhelmed with medical jargon that sounds like another language. Take the time to ask questions and research what it really means in everyday terms. Once you’ve deciphered a little about what it all means, dig deeper. Weigh all your options and decide what is best for you personally.
You will get a lot of differing opinions and advice about the best courses of treatment. Remember, no one can force you into doing anything that you aren’t 100% comfortable with. Pray about it and stand up for yourself. Do what you know is best for you and your health.
If you are a family member, help your loved one sort through all the material, facts, and figures and support them in whatever they decide. Sometimes, you might need to use a little tough love to help them, but it will be worth it in the end. Be sure not to lose faith and place everything in God’s hands.
Mesothelioma Nurse to Another: “Thanks for All Your Hard Work”
Mary Hesdorffer is the Executive Director of the Mesothelioma Applied Research Foundation, and is a tireless advocate for mesothelioma patients and their families. The mission of the Meso Foundation is to support patients and to fund research leading to a cure for mesothelioma.
Mary has been an advocate for the mesothelioma community for many years. She is passionate about her patients, and thousands have benefitted from her support and knowledge. Mary is a leader and a personal inspiration to patients, caregivers and fellow nurses. She is always available and approachable – and most importantly, she knows the answers to your mesothelioma questions (or will get it for you).
Today, while looking for the right way to spell her name, I came across an exciting new project that Mary has completed. She has written the first-ever booklet on clinical trials for mesothelioma. Clinical trials are the way that mesothelioma researchers are going to eventually be able to cure mesothelioma. In the United States, less than five percent of cancer patients participate in clinical trials.
Educating patients and their families about clinical trials is imperative to future treatment modalities, and for refining the ones that we currently have. One of the barriers to mesothelioma research has been patients and treatment centers not knowing what is available. Which studies are enrolling patients, what the criteria for the studies might be and the clinical trial phases are all key pieces of information patients and doctors need to know to find an appropriate trial. All of this information is available on www.clinicaltrials.gov, but many people are intimidated by the site or just aren’t sure what to look for.
Mary has simplified the search process and made the booklet easy to understand. Hopefully, her efforts will lead to increased knowledge and participation.
Navigating the medical system when dealing with any condition can be challenging, but when you or someone you love is diagnosed with mesothelioma it can be totally overwhelming. The information that you find might not be up to date. It is important to go to a mesothelioma center and be seen by a team that specializes in mesothelioma. While doing your research look at the Mesothelioma Applied Research Foundation’s website, www.curemeso.org, download the booklet, view the past conferences, and know that the organization is dedicated to support and research for a cure.
Mary Hesdorffer is a true mesothelioma hero. Thank you, Mary, for all your hard work and tireless dedication to the mesothelioma community.
Summer is a Good Time for a Mesothelioma Fundraiser
Summertime is a great time to plan an event to fundraise for mesothelioma causes!
If you’re looking for some ideas, here are just a few:
BBQ: Hold a barbecue dinner at your local community organization, park, or Church! Ask businesses in your area to donate food, drinks, paper plates, etc.
5K Run or Walk: These events can be a bit more involved, but if you ask, people are always more than willing to help. Find out if there is a race organization in your area who can help you, or talk to volunteers of similar events. They can be a wealth of knowledge.
Festivals or Carnivals: If there are events like these in your area, ask if you can set up a vendor table. Pass out information, collect donations, raffle off some baskets (this has always worked well for my family) and raise some funds!
Collect at local businesses: Ask local businesses if you can do a collection day for your cause. Stand outside the business with a can for a few hours, pass out information, and you will be surprised how generous people will be!
Hold a golf outing: If you’re a golfer, or know lots of people who like to golf, take advantage of the courses in your area and ask if they would help you plan an event. Here’s a perfect excuse to play 18 holes!
These are just a couple of ideas for fundraisers, but the possibilities are endless. Take advantage of the warmer months and help to find a cure for mesothelioma!
Family Adjusts to a Slower-Paced Life After Mesothelioma Diagnosis
Before Dad’s diagnosis in January of 2013, my parents’ lives were upbeat and busy. They worked opposite shifts, Mom during the day and Dad evenings from 4pm-11pm. Since they didn’t see each other much during the week, weekends were their thing. Whether they were working in the yard or going on a day trip somewhere, they always had something planned.
Our familyare huge sports’ fans, and we can all thank Dad for that. We always made the time to go to different sporting events. Each fall we would usually go to two Philadelphia Eagles games. One game Dad would never miss was the Eagles vs. Giants game, and he would only take the boys. That was their bonding time and we girls had to stay home.
As a family we would go to another one together, and we would always have a good time taking the bus to Philly, grilling with the other people on the bus trip, dancing to the band Mr. Greengenes (the Eagles pep band a few years ago) and, of course, watching the game. Now, Dad enjoys watching games in the comfort of his own home.
My brother, Andrew, and Dad would also go to the NASCAR race in the Poconos each year. This was always their thing to do with my dad’s racing friends. Unfortunately this year, he won’t be taking Andrew; instead Andrew is now taking a friend. I’m not sure if Dad thinks it would be too much, or has just lost interest.
My parents also always vacationed somewhere each summer. Summer of 2011 was their last big trip to Key West with my mom’s oldest sister and her husband: Aunt Sandy and Uncle Anthony. I know they had a wonderful time boating at sunset, going on a breakfast cruise to a small island, listening to bands on Duval Street and just enjoying the sunshine together. Summer 2012 saw them head to the Jersey Shore where they stayed in a condo for a few days and then came to stay with me for a few days in my shore house. We spent long days on the beach and enjoyed nice dinners at night followed by listening and dancing to a band. Now though, I’ve noticed that even going out to dinner is sometimes too much for Dad. Also, he often doesn’t have an appetite either to eat a big meal.
The last get-away my parents had right before Dad’s diagnosis was a trip to Montawk for their 37th wedding anniversary in September of 2012. They took a bus trip and visited my dad’s favorite things – lighthouses and wineries, took mansion tours and enjoyed a few nice dinners. Of course they didn’t announce to anyone about celebrating their anniversary since they aren’t the flashy type. To make one of their dinners a little bit more special, I sent them a bottle of wine to be presented to them at dinner. The dinner was with the group they were with on the bus trip, so everyone saw what they were presented with it and they all congratulated them. They had a great time at dinner.
I think trips to these extents are over. Living with Mesothelioma limits you to much calmer and slow paced activities. We haven’t figured out yet how to alter doing trips that Dad can handle. He gets out of breath very easily and doesn’t have much stamina to do long days. It’s time to figure out things for him to be able to do to start enjoying life again.
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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