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Why I Will Always Be an Advocate for the Mesothelioma Community
Advocating for mesothelioma patients and their families has become a big part of my life since my Dad’s diagnosis in January of 2012. Even though I knew next to nothing about the disease, I immediately felt connected to the mesothelioma community and knew that I needed to do all that I could to help find a cure and to fight on their behalf.
Throughout my Dad’s journey with mesothelioma, my family and I did fundraisers to work toward finding a cure for this terrible cancer. Over the past two years, I have been blessed to come to know many researchers, caregivers, and meso warriors. Hearing their stories inspired me to do more, but I wasn’t sure what I had to give. I was so grateful for all those who were fighting on my family’s behalf, but I didn’t know how I could help. Total strangers were pulling for Dad and praying for us, how could I ever repay them?
When I lost my father on October 15, 2013, I realized that what I had to give was my voice. Through writing, fundraising, and just talking to people to raise mesothelioma awareness, I can make a difference. And so can you.
Being a mesothelioma advocate means speaking for those whose voices have been silenced by the disease. It means fighting for those whose bodies need to focus on healing. It means educating others about the dangers of asbestos and the serious implications of exposure. The best part of this is that you don’t have to do it alone. There are lots of people out there who are encouraging mesothelioma patients and research in their own ways. Innovate. Get creative!
Being a mesothelioma advocate is a wonderful way to remember a loved one who has fought this horrible sickness or to honor someone who is still battling. I choose to speak up in memory of my Dad, who fought tirelessly until he took his last breath. I owe it to him and the rest of the mesothelioma community to keep fighting. My prayer is that together, we can find a cure so that no one has to go through this ever again.
Family Deals With the Return of Mesothelioma Tumors
Last week Amanda talked about the fresh start to the New Year. In that article she also mentioned that her father slipped several times on the ice. Was it the falls that were leaving him feeling sick and tired?
February rolled around and it was a big birthday month for our family: it was my birthday and my brother, Adam’s, birthday. I was turning 28 and Adam was turning 22. Our birthdays are only 10 days apart and since we both live a distance away from Mom and Dad’s, we have been combining the celebrations together when we could both make it home. We decided on February 22, my brother’s actual birthday to come home and celebrate. Dad was very excited for us all to be together and we were planning on going out to dinner. He said it was my choice where to go to dinner, and I had picked one of my favorite chowder houses that is close by to their home.
The weekend had come around quickly and I was very busy with work and coaching and had not been checking in with Mom and Dad as much as I usually did. Plus, if there were any concerns or something was wrong I knew they would call me. In my mind, all was still going well at home with Dad’s health and work was still going smoothly.
My plan for Saturday was to go to a cheerleading competition with the cheer team I coach and then head home to my parents for the rest of the weekend. After watching my girls compete and get their awards, I started on my way home. I called my mom to check in and see what everyone was up to.
She only then informed me that Dad had not been feeling well for the last week. She said he had been really sore in his lower back and he was very short of breath. My first thought was that his back was still bothering him because of the couple falls that he had. She said that he was going into work that night and she mentioned that we might just cancel dinner on Sunday because of the way he was feeling. She would cook instead or we would order from our favorite pizza place.
When I got home my mom and I caught up and watched some TV on the couch together. As we were sitting there we got a message from Claudia, Dad’s secretary. She said that she was concerned about him. She said that he looked horrible and that he had just got sick at work. She insisted that he go home immediately and even had offered to have her husband drive him all the way home. Dad insisted that he could drive himself and he did. As soon as he got home, he went straight to his bed. Mom and I checked on him, took his temperature, gave him medicine and made him comfortable. He didn’t want to be bothered and just wanted to lie down.
I started texting with a good friend of mine who is a doctor and often gave me advice when it came to my dad. She mentioned the falls that he recently had and how there could be something wrong because of the blood thinners he was on. She suggested that we take him to the emergency room just to be sure. I mentioned it to him and he wanted no part of it. So I told him if he doesn’t feel any better in an hour or so, I wanted to take him.
Sure enough, he finally said he wanted to go to the hospital. My mom and I took him to the local emergency room and they took him right back. This made me very on edge, as did my mom. We were under the assumption that his fall in the driveway was causing some type of bruising, a fractured rib, or just severe soreness in his back. When asked by the doctor how much pain he was in, to our surprise he said a “nine” and asked multiple times for pain medication. For Dad to say that, a man who has a very high pain tolerance, he must have been feeling very miserable. I cannot even imagine.
We ended up being there until about 4:00 a.m. The doctors did a handful of tests including x-rays and a CAT scan. After the CAT scan, the doctor said he would be out with the results within an hour. This hour felt like eternity. We sat and sat. Mom and I fell asleep for a little bit. I paced up and down the hallways. Almost two hours had gone by since the doctor finished up the scan. As I was walking, I saw the doctor studying the results on the computer screen in the office area. Right then and there I got a horrible feeling: it’s back. I knew it at that moment. I went back in the room and I sat there quietly.
My mom said she had a bad feeling. I told her I did too, but to just wait and see what the doctor said. Soon after that, the doctor came in, and he reported to us news that he hated giving. The mesothelioma had come back aggressively. He compared the last scan in January to the one now in mid February. He said that we needed to call his doctors in Philadelphia immediately and get down there. Within about a month the cancer had grown from two pea-size spots to multiple masses in his chest with the largest being the size of a grapefruit on his liver. This was why he was in so much pain in his lower back. The tumor was pushing on his ribs and lower spine.
Our hearts sank and once again we felt defeated. After those few months of feeling relaxed and things were somewhat normal, why did this have to happen? After the intense surgery he had gone through, why did this have to happen? After chemotherapy and radiation, why did this have to happen? All that kept circulating in my mind was “why, why, why?” All the doctor could do for Dad was give him some pain medication and send him home. We listened to the doctor’s advice and Dad called UPenn first thing on Monday morning.
Family, Friends, Coworkers Come Out to Celebrate and Support Mesothelioma Patient
After seeing what Dad went through in the hospital after his surgery, the mental and physical stress he has been under, and not being able to work, I decided to plan a benefit for him. Throughout the summer I gathered items for baskets through many of the local companies in my parent’s hometown and items from places down at the shore. I contacted good family friends of ours, Lex, Patty, Jessie and Carrie Wilkinson, who just opened a sports bar very close to my parent’s house named Dub’s on 5th. I also contacted Sal Ritz, a high school friend of my parents who has his own band, and plays locally at many different events. They were all on board and wanted to help in anyway they could.
August 14 was the day I had planned. I did not go into much detail with my parents about what this night would be like – I just told them that I wanted to do this for them and to just show up. I wanted this to be an evening of happiness, and to enjoy being around friends that my parents haven’t seen in years. The main reason for this benefit was to get family, friends and neighbors, new and old, all together. A lot of our family and my parent’s friends were either unaware that Dad was sick or they did not know how his treatments were going.
After all the preparing, the day finally arrived. A few close friends of mine came to my parent’s house with me to finalize the baskets and get everything in order. I arrived at Dub’s on 5th with my brothers and a few friends to set up. The Wilkinsons helped me get situated and were very warm and welcoming to me, as always. To my surprise a few of my dad’s old coworkers and friends were there already. Dad’s old coworker introduced himself and told me how he remembered me as a little girl running around. That just shows how long it’s been since Dad has seen some of his friends, and they had no idea what my dad was going through.
People started pouring into Dubs and buying tickets for the baskets and the 50/50. Within an hour the place was packed with so many familiar faces. Even all my friends from Philadelphia and some of their families made the two-hour drive to be there. Sal Ritz started playing while everyone was ordering dinner and drinks as well as enjoying each other’s company.
My parents finally arrived and walked into Dubs. When they saw the people in the room they froze and their mouths dropped. They had no clue what to expect, and they were blown away by the turn out. There were people there that they haven’t seen in 20 years that came to show their support to my parents. The smiles on Mom’s and Dad’s faces were priceless. After all the stress they have been under in the months prior, it was so good to see them smiling, having conversation, and enjoying company of everyone there. My dad is a man of few words at times, but he was so touched by the amount of people that were there for him. He stood up with Sal Ritz and thanked everyone for coming and I remember him saying, “This night shows me how much support I really have and I couldn’t be more thankful for that.”
Dad was able to stay until after the announcements of the prizes; although he said that he wanted to go before them because he was getting tired. He was happy to see who some of the prizes went to: Box seats to a Phillies game went to two of his best friends growing up, an autographed Flyers photograph to a new friend, a fruit basket to an old neighbor from when he was growing up, and many more.
This night helped raise awareness for mesothelioma and also raised money to help fund the travel expenses to and from Philadelphia for Dad’s treatments and toward some medical bills. But most importantly, it showed my parents the support that they have. So many people were offering to help in anyway that is needed.
This is the positive support any family dealing with cancer needs. When you are going through tough times, just the gathering and closeness of family and friends can lift you up. I can definitely say that this night lifted my family’s spirits and showed us the huge support that we really have.
Impact of Mesothelioma to a Daughter Who Lost a Father to the Disease
Mesothelioma…a difficult word. A lot of people aren’t sure how to say it, let alone know anything about it. I used to be one of those people. All I knew about mesothelioma came from those commercials promising legal help. I didn’t know it was cancer, I didn’t know there was no cure, and I didn’t know how it would change my life forever.
When I hear the word “mesothelioma” now, a range of emotions run through me – fear, pain, heartache. Everywhere I go, I’m afraid that there might be asbestos around. I feel pain every time I think of someone being diagnosed with mesothelioma or undergoing surgeries and treatments. My heart breaks knowing that this disease took my Dad from me and knowing that others have gone through this same devastation.
All these sincere emotions aside, perhaps the most painful thing for me is that, in many cases, the general public who are lucky enough not to be privy to the world of mesothelioma, don’t take it seriously. There have been many times since Dad’s diagnosis where I have overheard people saying that asbestos is a joke, that it won’t hurt you. I always make it a point to step in and politely and calmly explain that that is simply not true. It’s something that I take incredibly personal; I feel as though I have to defend my Dad and all those in the mesothelioma community.
It is so important that the general public be educated on the dangers of asbestos and mesothelioma. It is for everyone’s protection. Knowledge and caution will help, but knowing that asbestos is still legal in the United States truly angers me. Meso is a completely preventable disease that we all need to protect ourselves against.
If you have questions about mesothelioma, contact the Mesothelioma Applied Research Foundation to find out more. Help to spread the lifesaving information they have worked so hard to provide, and continue to “Believe in a cure!”
Mesothelioma Patient Turns the Corner on Her Recovery
Last week the mesothelioma patient we have been following for several weeks was still very sick with infections, air leaks, and respiratory failure she developed after her surgery. She was very depressed, as was her family, as they were not expecting such a rough recovery. The family has been very frustrated, and they started second-guessing their decisions and began to wonder what their loved one really wants for her care. They held a family meeting where they decided to re-assess in one more week. Fortunately, there have been small but steady gains during the last week – the woman’s infections have subsided, she is gaining strength and her attitude has become more positive.
In talking with her husband and daughters, who are in their early twenties, I got to know what kind of person the woman is as well as how much this sickness is affecting them too. Finding themselves in the role of caregivers is foreign territory. When asked to describe what their day looks like, they explained that it starts early with a call to the ICU to see what kind of a night their loved one had. Then it is on to the hospital where they spend as much time as possible with their wife and mother. It includes time spent in the waiting room with family members of other patients, some much older patients with mesothelioma who are doing better than their loved one. Then they meet with the doctors for their daily update.
Thankfully, their loved one has a team of primary nurses who know her well and feel like part of the family at this point. Today, one of their favorite nurses is on duty. She is upbeat and personable – does she have any idea what that means to them? They say they do not have to worry about the “numbers” or their mother being too sick to ambulate – when they know this is vital to any chance at recovery. The hours go by slowly. They talk about how they try to deal with so much uncertainty – their wife/mother is the ‘director’ of the family and she guides them all through life. She would be the one who could tell them if they should go back to work or school, or if they should spend so much time with her. They want her to help direct them as to what to do now.
There have been guidelines all along for patients without complications; but their case is unique. Uncertainty clouds every decision. What if one goes back to school and their mother takes a turn for the worse and dies? Should they be thinking like that- it is reality- that it is a possibility. They describe being paralyzed with indecision as they wait for their “director” to tell them what to do. Mostly, they describe a situation so foreign to anything they have gone through as individuals or a family.
Emotional exhaustion has turned to physical exhaustion for all of them. They play the ‘what if’ game. What if she recovers, but she is in pain? What if her infections get worse, should they continue the same treatment? All those conversations about what she would and would not want are echoing in their heads. Luckily, their loved one’s health is improving.
Mesothelioma has been held at bay for another day.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please contact us.
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