Category: Mesothelioma
Ask Jennifer: “How Do I Manage All This Mesothelioma Paperwork?”
With any medical diagnosis comes a lot of paperwork. With something as complex as mesothelioma, that correspondence can become overwhelming. Keeping everything organized can be a daunting task, to say the least, but it’s a task worth undertaking.
I completely understand the thought that, “I have a million other things I need to worry about, I can’t sort through paperwork right now!” If there is any possible way to do it though, it really is important. Even little things like keeping all your records in one place and writing upcoming appointments on a calendar can make a world of difference. You never know when someone might need to see a form or copy of a scan. It’s very useful and beneficial if you are able to provide that information to them.
Mom kept the bulk of Dad’s records in a basket, and then the things that seemed more pertinent were put in a folder. That folder, along with a notebook, accompanied them to every appointment, meeting, and treatment. It proved to be a valuable resource time and time again.
If you’re not sure how to organize things, talk to someone at your doctor’s office; they may be able to give you some more specific guidance. Ask a friend for some help, their clear thinking will be extremely helpful! Best of luck to you and remember to always believe in a cure!
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Family Came Together to Decide on Best Mesothelioma Treatment
Jennifer’s father was diagnosed with mesothelioma in January 2012. Today she reflects on those first few weeks when her family grappled with deciding the treatment plan.
Once we received Dad’s diagnosis of pleural mesothelioma, we knew that some decisions needed to be made and rather quickly at that. We were originally told that the best option was to have Dad evaluated to see if he was a candidate to have his right lung completely removed.
After a couple of days, we received information about the possibility of a different surgery, a pleurectomy, in which the lining of the lung would be removed, but everything possible would be done to save the lung itself. This opportunity would require travel to New York City. Chemotherapy was also an option.
My Dad, Mom, husband, and I wrestled with many questions as to how we should proceed. From the moment of the diagnosis, we all knew that this was not just Dad’s fight. We were all in this together. We knew that we would do everything that we could to work together to give Dad the best treatment possible and would stop at nothing. Giving up was never an option.
We did know, however, that the ultimate decision would be my father’s to make. We carefully weighed all the possibilities and prayed for guidance constantly. Finally, Dad decided that he would take the trip to NYC. This resulted in living there for two and a half weeks, followed by countless subsequent trips for a clinical trial and radiation which required a six week stay. Dad had the utmost confidence in his doctors and entire medical team, and so did the rest of us.
Having my family band together and rally around Dad was a great source of comfort and solace for all of us, I believe. He knew that he wasn’t alone, and the rest of us knew that we could turn to one another for reassurance. It’s never easy to go through tough times, but going through them with those you love the most helps to cushion the blow.
Remember, that even though you might have moments when you feel as though it’s you against the world, God is always with you and is on your side. Rely on Him and pray for strength for your loved ones.
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Ice Bucket Challenge: Why Didn’t I Think of That for Mesothelioma?
The ALS Ice Bucket Challenge has been everywhere on social media and in the news. The people who created this challenge have developed an innovative, creative, and fun way to raise awareness and funds for their favorite cause. In looking at it, I have to think, “Why didn’t I think of that?” The truth is, you can!
Sometimes, I think that, as fundraisers, we might be afraid to pursue something as big as the ALS Ice Bucket Challenge. We might wonder what will happen if it fails, if it is seen as a copy-cat type of thing, or if people choose not to participate. In all honesty, we will never know unless we try.
I happen to not be very creative (you can ask anyone!), so my new ideas are completely few and far between, but you might not be that way. Take a risk with your endeavors and think big. Contact me… I’m always happy to help out. You might just have the next big, viral fundraising idea on your hands!
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Educate Yourself About Mesothelioma to Be a Better Advocate
In order to be an effective advocate for the mesothelioma community, it is important that you become educated about the disease, its causes, effects, treatments, and latest updates. The more you know, the better you can help teach others and encourage them to support the cause. You owe it to yourself and those you fight for to be as well prepared for questions as possible.
Many times, while attending a fundraiser in the community, people ask a lot of questions. Some have never heard of mesothelioma, while others are just curious to learn more; there are even some who want to question the validity of what they are donating to. Either way, it would be a disservice to any of them if you don’t at least let them know how to obtain more information. It’s okay to say that you don’t know the answer to their inquiry, but it’s important to be able to steer them toward someone who can help them.
There are many ways to learn more about mesothelioma, one being getting in contact with the Mesothelioma Applied Research Foundation. Their staff dedicate their lives to eradicating this disease and are a wealth of knowledge. They can help you learn, provide you with valuable information to pass on to others, and even help you organize a fundraiser. They are extremely helpful and are always willing to share what they know with you.
Thank you for working so hard to advocate for and support mesothelioma patients and their loved ones! Educating yourself on this disease is hard, sometimes very trying, work, but believe me when I say that the appreciation from this community knows no bounds!
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Dealing With a “Different Me” Since Losing Dad to Mesothelioma
After my Dad was diagnosed with pleural mesothelioma, people said there was something “different” about me. They were absolutely right. My whole world had been changed and turned upside down. We had just been told that my amazing father had an incurable disease; there was an instant change in my entire family.
I had always been a worrier, but even the care-free side of myself began to be plagued by a constant sense of apprehension. What would happen next? What would the results of the next scan be? How would Dad feel after his treatments? It seems like millions of questions filled my head. With this on mind, it’s easy to see why I was different.
It seemed as though people seemed to get used to that initial kind of different. They learned to accept that I just had a lot on my mind, and did their best to help me through it. Then, my Dad lost his battle to mesothelioma.
After Dad passed away, I went through a time where I had no idea what to think or feel. When asked the age old question, “How are you?” I often replied with “Ok, doing the best I can,” or “Taking it one day at a time.” The platitude of the day changed periodically. I found that it was impossible for me to express how I was, because I wasn’t sure myself! Finally, people started to ask if I was okay, and I began to say that I wasn’t, but that someday, I would be.
Even though it’s not “ok” that I lost my Dad, I have to find a way to make myself be all right. There are days and things that trigger me to break down, but I have realized that I have to pick myself back up again. Dad would never have wanted me to be upset, especially with the faith that he is in Heaven.
I am a very different person now than I was two and a half years ago. I have watched my family be shaken to its core, but rise up untied and strong. I have experienced a loss so profound that I find it difficult to put it into words. These kinds of things will change a person, you just have to choose to let it change you for the better.
I think that this whole experience has made me much more aware of the suffering of others, and hopefully allows me to be more helpful and in tune with their needs. I am much more mindful that there is no guarantee of tomorrow for any one of us, and that we need to make the most of each day God gives us. This “different me” has felt intense pain that has made me stronger.
Remember that it’s okay to change with the seasons of your life. Everyone has a journey that they must travel and your response to it is as unique as your life itself. Rely on God to help you transition smoothly over the bumps in the road and never lose faith.
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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.
Download Now