Author: Joseph Belluck
The Mesothelioma Community Needs Advocacy Not Apathy
All too often when we hear of someone with a mesothelioma diagnosis, we give a standard response: “Oh, that’s too bad. Let me know if you need anything.” Then, normal life is resumed. You may pray for the person and their family, and that’s absolutely appreciated and important, but do you ever really follow up? Apathy and indifference seem to dominate society today on many levels. It’s time to give that up and let it give way to advocacy and action, especially when it comes to fighting mesothelioma.
Sometimes, we tend to feel bad for others, but think, “Well, it’s their problem, I don’t want to interfere.” It’s right, in a sense, not to want to get in their way sometimes, but you can take action on your own without the family even knowing.
Asbestos, the underlying cause of mesothelioma, is still legal in the United States. Contact your local representative and fight against it! Hold a fundraising dinner or bake sale to benefit the family you know. Although I do recommend getting the family’s blessing, medical treatments and travel get expensive, and I’m sure it would be appreciated.
Spread the word about the dangers of asbestos and the real consequences of being exposed to it. Contact the Mesothelioma Applied Research Foundation – they are happy to provide information and have wonderful ideas and concrete direction on how you can help fight this horrible disease. The person you know who is suffering from mesothelioma may not even know about the Meso Foundation. Give them some information; it could lead to an extended group of physicians and treatment options.
Working to find a cure for mesothelioma doesn’t just stop there. This research could lead to cures and treatments for other types of cancer as well. It’s amazing what a difference one person can make. Imagine what we could all do together!
My Father’s Passing Leaves Me Asking, “What Would Dad Say?”
When my Dad died, I didn’t just lose my father. He was so much more than that. On October 15, 2013, I lost a best friend, mentor, comedian, story-teller, and guide. When you lose someone you love so much, you lose a part of yourself.
Dad was honestly one of the best friends you could ever have asked for. People were always drawn to him, wanting to be around his infectious personality. He graced so many people with his presence, but I got to have him all the time. There are so many little things about my relationship with Dad that no one will ever know. How when I was little, any time I was sick, he would go to the store and pick up some goofy present for me. Whether it was an oversized coloring book and crayons or a silly book, those gifts became some of my favorite things.
My Dad was (as I’ve said before) so wise and gave me the greatest advice. I often feel lost without him when I’m trying to make a decision. Instead of picking up the phone to call him, I now have to sit back and think hard about what he would suggest and ultimately, what he would do in his own life. He was a walking, talking example of what a genuinely good human being should be.
Dad was funny! Most of the time, he didn’t really mean to be funny, it just kind of stumbled into his lap. He had an amazing sense of humor and was always laughing at himself. Don’t get me wrong, he was a jokester too! He loved to make people smile with his off-kilter way of talking or just doing a funny move.
My father truly was an extraordinary man and a piece of me did die with him that day. I lost one of the brightest lights in my life, but I do realize how blessed that I am to have had him as my Dad. It brings me comfort to know that even though I lost him, Heaven gained an angel.
Know more about Mesothelioma and how you can deal with it.
Family Cautiously Optimistic at Shrinking Mesothelioma Tumor
I’ve said this before and anyone who has been through cancer treatments knows that when a scan is coming up it is the most nerve racking time that you can experience. The nine weeks of Dad’s chemo were coming to an end and it was that time again. The facts were that we didn’t know how this round of chemotherapy would work, but the doctors were confident. Dad’s doctors could make no guarantee if it would even work to shrink the tumors that had grown back in his chest and liver. All we could do was pray and be hopeful.
In the week leading up to the scan, Dad suddenly started having an awful pain on the right side of his chest where there had been small pea-sized tumors that just wouldn’t go away from the chemotherapy and radiation treatments. This made him very uneasy about what the scans would show. The spot then became swollen and red within the next few days. Dad was feeling very discouraged by this and was dreading the upcoming scan. He told me that he had the same feeling about the results as the night before he went into his 15 hour surgery: the feeling of the possibility that he would lose this battle. Hearing your father speak like that is hard to take, but all you can do is encourage him that everything will be okay and keep positive.
Monday came around and he had an appointment close to home to get the scan done. They asked him if he wanted to see the results that day and he told them he did not want to know. He wanted to wait until Friday to discuss what the scan showed with his doctors in Philadelphia, so they could talk about a plan of action. I understood his reasoning, but it was burning a hole through me all week. I cannot imagine what it was like for him to have that lingering feeling of what the scan showed, but I know how I felt and I was on edge. I could tell that everyone in our family was too each time I talked with Mom and my brothers. We all wanted to know so badly, but knew that it was best to wait to talk about what to do next.
Friday came along and I was at work. I carried my phone around in my pocket all day waiting to get the call from Dad. I didn’t even know if I wanted to find out during work, or if I just wanted to wait to look at my phone until the end of the day. Around lunch time I saw a text from my dad, “Just left doctor’s office. CT scan shows that the cancer is shrinking, but still need 3 more series of chemo at least.” I took a deep breath and the feeling of relief overcame me.
After work I called to see how the rest of the day went and how his treatment went that day. I asked about what the doctor said about the pain in his chest and it turned out to be effects of the radiation showing up. Dad seemed to feel relieved, but still felt a bit discouraged in the fact that he said he has accepted that he will probably be on some sort of treatment for the rest of his life. He knows how sick he was on this last nine week cycle of chemotherapy and he was going to have to go through it again.
Once again, all I can do is keep encouraging him to keep fighting and that everything will work itself out and it will be okay.
Continue reading next week about the side effects and changes in my dad while he is on chemotherapy.
Happy Birthday Dad
April 25 would have been my Dad’s 58th birthday. Instead of cake and presents, there were flowers, tears, and a visit to his grave site. Where there should have been the sounds of laughter and singing, there were tears and sadness. We spent the day looking back at the past instead of looking toward what the following year would hold. Everything is different now.
Looking back and thinking of how we usually spent Dad’s birthday, I can’t help but smile. It was always simple, but special. We would have presents and cake and usually go out to dinner… one of those dinners that would last for hours full of stories and memories being made. Dad and Mom’s birthdays are two weeks apart, so we usually celebrated both of them together.
When Dad turned 50, we had a surprise party for him. There were 100 or so guests, family and friends, who came out to fete him. His band played; there was great food, funny gifts, and just a wonderful night to honor such an amazing person. I know that Dad felt so loved that night; his smile said it all.
When we started planning the party, we knew we wanted his band to be there, but didn’t quite know how to arrange that without him figuring it out. That’s when it was decided that I would tell him that my aunt and I were planning a surprise party for Mom. I told him that his only job was to get the band to play. I could tell that he wanted to do more and that it kind of hurt his feelings a little. I felt horrible!!!! All I could do was tell myself that I had to let it go until the party. I remember apologizing to him that night and he just laughed, like he always did!
That night, we had no idea that he wouldn’t have very many birthdays left. Life was easy and fun, so lighthearted, just like Dad. He wasn’t a worrier; he just took things as they came. Thinking of things this way, it makes me realize even more to treasure your time and make the most of every second.
Even though I miss Dad constantly, it’s the special occasions that are the hardest. It brings so much pain into my heart thinking back on the past and realizing that Dad’s not here to share in our present or future in the way he used to. The most important thing, I suppose, is to always remember that he’s in my heart and the hearts of all those who loved him. He has given us a birthday gift in this way.
I hope you had the best birthday in Heaven, Dad. I’m sure the cake and ice cream were the best ever.
Mesothelioma Advocates are Critical for Helping to Find a Cure
I have said numerous times that I had no idea what mesothelioma was until after my Dad was diagnosed. And, really, if you have no reason to know, why would you? Mesothelioma is always shown in commercials, with people offering some sort of legal advice. The word might be out there, but in no way does that explain what it is, how there is no cure, and what causes it.
Mesothelioma might be considered one of the lesser known diseases of our time. Even so, those impacted by its grasp find that they can never get away from it. With the cure not being found as of yet, loved ones of those who have or have had meso find themselves in constant fear of asbestos, myself included. We try to educate others of the dangers of this material and provide as much information as possible, but it still feels like people aren’t really listening.
Funding for mesothelioma research and education is critical. We must not only educate the general public about this form of cancer, but also work constantly to raise money that goes toward research so that we can, someday very soon, find a cure.
With people not being overly familiar with mesothelioma, it is sometimes tough to fundraise. People might not want to contribute to a cause that they know nothing about. When you are working on a fundraiser, be sure to offer literature that your patrons can look at. If your event is in honor or in memory of someone, talk about them and their life and how it was changed by this disease.
Having lived through my Dad’s journey with mesothelioma makes me want to work even harder to raise funds for organizations that work towards eradicating this disease. Dad underwent a heartbreaking diagnosis, surgery, chemotherapy, a clinical trial, and radiation before he passed away on October 15, 2013. The time between his diagnosis and passing was almost 21 months. That period was the most challenging of his life and the lives of our family.
Even though my Dad is now in Heaven, I will continue to work to raise awareness and funds for mesothelioma research, and I hope that you will join me. My prayer is that together, we can save lives through education and treatments, and finding new leaders who are committed to ultimately find a cure for mesothelioma.
Know more about Mesothelioma and how you can deal with it.
Free Mesothelioma Patient & Treatment Guide
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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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