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Consider Designating Your Donation Dollars to Mesothelioma Clinical Trials
Clinical trials are vital in the fight against mesothelioma. New data and treatments can stem from these trials, bringing us one step closer to finding a cure to mesothelioma in the near future. Like any research, these trials need funding, and you can help!
When you donate to a mesothelioma cause, you often have the option to designate where the funds will go. One option is toward research and clinical trials. Just imagine, you could contribute to finding the cure for this devastating disease; what a huge honor that would be!
My father participated in a clinical trial through Memorial Sloan Kettering Cancer Center in New York City during the Summer of 2012. Dr. Lee Krug, a brilliant, dedicated physician, was in charge of the study. Dad knew that taking part in the trial would help in the overall fight against mesothelioma. He was excited to share in something like this, even though it meant a lot of travel and some time away from home.
When you are advocating on behalf of mesothelioma patients and their families, be sure to let your listeners know the importance of clinical trials. They are among the most promising avenues to find new ways to help those in need and to ultimately eradicate mesothelioma altogether.
Tips for Planning Ahead When Traveling for Mesothelioma Treatment
Through my journey of caring for mesothelioma patients one characteristic shines through – persistence. It seems like a no brainer that people will do anything to live a little longer, but anything can mean a lot for many patients. Will you travel hundreds of miles to a treatment facility?
It is not easy to be away from home and to be ill. It becomes emotionally and physically exhausting. Mentally you need to be on your game. You will be gathering new information regarding your health, plans for treatment and expectations. When traveling for your treatment, you also have the added burden of planning how far you are willing to travel from home, where will you stay, who will travel with you, and if the treatment involves surgery or sometimes experimental studies, how long will you be gone.
So now you have decided to go the distance and take the plunge, and rearrange your life. Everyone knows there can be complications, but mentally planning for this can be very difficult. Complications can mean pain, more surgery, stopping chemotherapy temporarily and possibly extending your length of stay.
As I write this it does not sound bad, but living it is totally different. I see countless patients and families travel for their treatment, but I am not sure I could. Once you have an end date in mind and you begin planning to go home, changing that date can be devastating. Staying in the hospital longer than planned is never good, but when far away from your friends and family it can be even harder to handle.
Consider these few tips that can help keep your stress down when you travel for your mesothelioma treatment.
- Extend your deadline so you won’t be disappointed if you have to continue treatment longer.
- Get a coach. There are nurse coaches specifically designed to help mesothelioma patients. They can help with anxiety, pain, recovery and maintaining positive outcomes.
- Talk to a fellow mesothelioma patient. Unfortunately these treatments are not easy, but they can help ease your pain, extend your life and allow you to enjoy time with your family. Often time there are patient to patient programs where you can reach out and talk with someone who has already endured this situation and can offer tips.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please contact us.
Finding and Giving Comfort
The natural reaction of the human spirit is to try to help others when they are upset or in pain. When you hear of the loss of a loved one, you immediately want to comfort those closest to them… even when you are one of the closest.
When Dad passed away, telling our family members and friends was emotionally draining. It made it more and more real with each phone call. Even though avoidance wasn’t an option, hearing the reactions of others was brutal. Keeping with that natural response, our first instinct was to comfort them. Then we realized that we needed comforting ourselves, that we couldn’t really help anyone else through this time until we grieved personally.
Don’t get me wrong, I understand how important my Dad was to so many. It was just impossible for me to try to help ease anyone else’s pain until I had my own under control in some way. There is no concrete time table for this, mourning a loss is a very individual experience.
Others came and went from the house and the funeral home and Church, offering prayers and condolences. When you experience a tragic loss, it’s important to remember that everyone is doing the best they can, and may not know what to say. They try to be in tune with what you might need, but everyone goes through a time like this differently, so be patient with them. Some things people say might come off as insensitive, but remember that they may just feel awkward and unsure of how to approach you.
Never be afraid to let others know how you are feeling or if you need something. People genuinely are there to be of help; guessing what you may need is the hard part for them. When my family and friends saw me for the first time after Dad passed, they didn’t know what to expect. You need to give others a chance to process your reaction as well, as they will normally try to follow your lead.
Pray for the family who has lost someone and be sure to check in on them from time to time. Let them guide the conversation and be supportive and genuine throughout. They may not be able to say it at the moment, but they really do appreciate all you’re doing for them.
MesotheliomaHelp Essay Contest Raise Awareness to College Students
Several months ago, I was asked to judge this year’s Mesothelioma Help scholarship essay contest. I immediately said yes, what a wonderful way to give back! Then, I was told they would like to name the scholarship for my father, and I was floored. What a beautiful honor and tribute to my Dad. I can just hear him now saying that he had made the big time! I was elated to find that this accolade would be shared with Jan Egerton, another beautiful person that I was privileged to communicate with, who lost her battle to mesothelioma over this year.
The Jan Egerton and Don Smitley Mesothelioma Scholarship will be awarded to ten students from colleges and universities across the United States. The awards range from $5,000 to $100. The essays will be judged by me and Lisa Hyde-Barrett, a thoracic surgery nurse.
The underlying goal of this scholarship is to help the educational efforts of students while raising awareness of mesothelioma and the dangers of asbestos. What a wonderful way to get the younger community involved and to educate them about this terrible disease! With the annual number of deaths caused by mesothelioma increasing, we need more advocates to fight for those who suffer from it and those who love them.
Students may choose from three topics:
- A mesothelioma survivor’s story.
- The history of asbestos use in America
- The latest developments in the treatment of mesothelioma.
For more details on the contest, please visit: Jan Egerton and Don Smitley Mesothelioma Scholarship.
I look forward to reading the wonderful submissions this year and to helping more youth become involved in the fight against mesothelioma. My hope is that many eyes will be opened and our number of supporters will vastly increase. Best of luck to all and God bless you!
Tips for Helping to Keep Mesothelioma Patients’ Spirits Up
When you or a loved one are undergoing treatment for mesothelioma, it is an easy thing to do to start to feel down. Keeping your spirits up can help everything to go more smoothly. While my Dad was having surgery, chemotherapy, and radiation, his spirits were great 99.9% of the time. Sometimes, it felt like he was the one keeping me smiling as he always did!
Here are some ways Dad kept his spirits high and some things that have worked for me over the past couple of years:
- Pray. It’s as simple as that.
- Get involved in the mesothelioma community. Sharing what you and your loved ones are going through with others who really understand is such a comfort. It reminds you that, even when you feel at your lowest point, you are not alone in this fight.
- Share stories and watch home movies. It’s so much fun to watch those funny moments back. It’s a time to reminisce and laugh at yourselves. Those funny clothes we all wore are, in themselves, definitely enough to get a chuckle or two out of everyone watching.
- Plan ahead. Talk about upcoming events that will happen after the treatment is over. If you don’t have anything going on, plan something! A picnic, a day trip, anything that you and your family enjoy doing together. Dad was always looking forward to the next thing, and it was a shining example of heroism.
Even though these activities can serve as wonderful distractions from the problem at hand, it’s also important to let the one with mesothelioma sort of lead the conversation and activity level. Just because these things were helpful for my family, doesn’t necessarily mean they will be for yours. You have to read the situation and find a healthy balance that works for you. The important thing is to not let the drama and sadness overtake you. There is still much to live and work for… God will get you through!
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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