Category: Family
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!”
Family of Mesothelioma Patient Faces Tough Decisions
This week we continue to follow a woman who is recovering from surgery after being diagnosed with mesothelioma. She has been struggling more than expected, and the family is trying to come to terms with the extended care needed to get their loved one back on her feet. The patient is critically ill and has many medical issues that need to be managed, and her family members are feeling lost.
They remember being told something about their loved one facing potential complications from surgery, but nothing could have prepared them for all this. Serious infections, respiratory issues, and most upsetting to them, the patient is very depressed and has lost all hope. Everything is a major effort- from acknowledging her family to asking for water- and it is painful for them to watch.
When things do not go as we expect and medical decisions need to be made, the most important thing a family member can do is to listen and to keep in mind what the patient told you in the past. What are their wishes? Those difficult “what if” and “I never want xxx care” conversations are all running through your mind. It is vital at this point in your loved one’s illness, that you remember their wishes and keep the lines of communication open with your healthcare team.
Now, it is excruciating to watch their family member struggle to talk and to perform the most basic human functions and they can’t believe that she will ever get better. The truth is while some patients do recover, some may not. Recovery goals are set each day in the ICU, and measuring the patient’s progress against them is one way to assess how the patient is progressing.
In our patient’s case, after two family meetings involving the health care team, some decisions are made. After much discussion and listening and praying the family has decided to keep going with treatment and to re-evaluate in one week. Now, the family is praying for improvements in their loved one.
Although to let you realize how grave the situation is, the decision has been made not to perform CPR if her heart stops. From the medical standpoint the treatment and care is aggressive, and the medical team likes to know they have exhausted all options. From the family’s perspective, they would like to see their loved one comfortable and at rest.
Next week we will offer an update as we continue to follow this patient.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please contact us.
Know more about Mesothelioma and how you can deal with it.
Chest Cold May Sign of Mesothelioma
My father has always been a very hard worker who would not stop until his projects were finished.
As long as I can remember he has worked long hours, often overtime on Saturdays, and although Sunday was his day off, he would still be busy doing some kind of repair or home improvement around the house.
It was not as if he was keeping himself busy to avoid his family, he was doing all this hard work for us. In his mind, Dad is a provider; a provider for his wife and children and he could not rest until he felt accomplished.
Even when Dad would feel sick he would refuse to miss work or even stop to go to the doctors. I remember back when he was diagnosed the first time with cancer, it took him a while to finally listen to Mom’s suggestion to go to the doctor to get the odd looking mole on his leg checked out. Same with this time around, he was not feeling well for weeks, or possibly even months since he never complained of any ailment.
It took him until he could hardly sleep at night because of his difficulty with breathing and the heaviness in his chest before he would go to the doctor. It was about a week before he went that I remember having a conversation with him about how work was going and what their yard looked like after Hurricane Sandy hit. He mentioned he was feeling like he had a chest cold that he could not kick.
He rarely would ever show weakness or even mention if he was not feeling 100 percent. He had told me that he already tried an antibiotic to get rid of his nagging ‘chest cold,’ but there was no improvement after completing his prescription. I told him maybe he needed to go back to the doctor to be tested for pneumonia or some other lung issue. He finally did, I don’t know if he took Mom’s and my advice, or if he was tired of feeling short of breath, but he finally went.
Our family doctor then admitted him to the hospital to have his lungs drained of the fluid found. At the time, I didn’t think much of his admission to the hospital, and I was denying the fact that this was anything serious. They ended up keeping him in the hospital for a few days after draining the fluid to await the biopsy results of the lung tissue and fluid. My mother had asked my brother, Adam, and me to come home. So that weekend Adam drove home from Penn State, and I drove home from Philadelphia, to see Dad with the rest of the family.
When I saw him, I could see how sick he really looked. That’s when I realized that something was up, I wasn’t sure what, but it definitely was not a chest cold. The doctor met with us that night while we were all there and explained that the biopsies showed cancer cells, but he was not sure what type of cancer. He assumed it to be melanoma that had reappeared after all these years as stage IV in the lungs. There was still more testing to be done, and samples had to be sent out for further investigation, because he wanted to rule out all other cancers.
We were devastated. We were confused. We were scared. Everything you can imagine that goes through a family members’ minds when they get this kind of news, hit us. We sat in the waiting room together: Mom, Andrew, Adam and me. We cried. We hugged. We sat in silence. We said that we would not show Dad that we were upset or weak. We had to be strong for him and what was to come.
We calmed ourselves down and went back into the hospital room that night and sat with him, making small talk and being cheerful despite the news. I remember I had some students’ papers that I had been grading while sitting there that Sunday with my family, watching football on the small hospital television screen before the doctor had come in. I got them back out and started sharing some of the funny things my students had written. It’s true what they say, “Kids say the darndest things.”
I got a little chuckle out of my parents to ease the mood and left that night to go back to Philadelphia feeling very upset, but also satisfied with that evening that we all spent together. I used to take time with my family for granted, sure that my parents would never get older or get sick. Now, I’ve realized that I should be cherishing every moment that we are all together.
The next day my father was sent home to rest for a few days before heading back to work. Later that week my parents received the phone call from the doctor with the results from the biopsies. It was NOT Stage IV melanoma. It was a cancer that we have never heard of before -it was Mesothelioma.
Check in next week for the continuation of my blog: “Where do we go from here?”
Daughter Reflects on Life With Don Smitley
Over these past few months, I’ve been reflecting on what it was like growing up with my Dad. I had told many people that I would have rather had 30 short years with him as my father than 100 with someone else. I mean that from the bottom of my heart. My Dad was the perfect father to me.
Dad was a special kind of dad. He was fun, goofy, and never afraid to look silly to make me smile. We were watching some home movies over Christmas where Dad and I were walking our dogs. Then, I decided to walk Dad. I put the chain around his waist and drug him all over the place. Some neighbors who were outside asked him what he was doing and he just laughed and said, “I’m getting walked!” He was constantly doing things like this. When he saw that I was happy, he was happy too.
Even though I danced my whole life, Dad wanted me to try out all different sports. Not necessarily by being on an official team, but with him. We spent hours outside playing baseball, kickball, and throwing a football around. I never exceled at any of these activities, but looking back, he was trying to help me become more well-rounded (or maybe to just be able to play games with the other kids). Plus, he liked chuckling at me when I would kick as hard as I could and miss the ball completely.
We were always going on adventures together. Whether it was taking a ride in the mountains or trying to bake cookies at home, he made even the most seemingly ordinary activity special. My Mom worked late one night a week; I was never in bed on time those nights. It became a game to see if I could get ready and be “asleep” under the covers by the time she got home. We never made it.
You would think that these things would have changed a bit as I got older, but they didn’t. Every Saturday morning was our time. Mom would be at work, and we’d be off. We would go out to breakfast, shopping, up to the mountains, for ice cream, do a project at home, and visit family… all in the same day. Those days are such precious memories for me.
Dad was more than just fun. We always had the kind of relationship where we could talk about anything. I know I have said before that he gave the greatest advice of all time, but it bears repeating. No topic was off limits for us: school, work, faith, we discussed it all. He always knew exactly what to say. If he wasn’t sure, he would tell me to let him think about it and he would let me know what he came up with later. And he always did.
I could write a book or 50 about Dad and his kindness, generosity, and genuine love for life, God, and his family. He was perhaps the single most powerful influence on my life. He didn’t just tell me how to live a good life, he showed me. This is a true testament of the life of the most amazing person I’ve ever known, and I was blessed to be able to call him “Dad.”
Know more about Mesothelioma and how you can deal with it.
Daughter Encourages Her Father, and Other Mesothelioma Patients, to Be Open to Help from Others
My father has been through seven months of treatment for his pleural mesothelioma: surgery, rehabilitation, chemotherapy, and radiation therapy; but now he is back to living life as normal as possible. He has returned to work and this helps him find normalcy again, for he has always been a very hard worker and does not like to be idle.
His work requires him to walk around a lot in a large warehouse. This is both good and bad. It’s good that he is getting exercise to help his lungs become stronger, but he does have to take frequent breaks and sometimes use his oxygen in his office. Besides returning to work, he also does his daily, routine work around the house, such as taking care of the pool, trimming back trees, moving and stacking firewood for the woodstove, and decorating for Christmas – there really isn’t much he has stopped doing since his diagnosis.
It is so great to see my dad back to his old self, but I have to remind him sometimes to ask for help. He’s a man of action and wants to get things done, so he takes a lot on himself. Just over Thanksgiving, while I was home visiting for the holiday, he was getting dressed to go outside to bring in firewood. I said to him, “Dad, I hope you’re not going to the back of the yard alone to get a load of firewood.” His shocked response to me was, “Well yeah, why not?”
I rounded up my two brothers and we walked behind his pickup truck to help. When we got to the back of the yard, he attempted to load up the firewood to fill the bed of the truck. Well, within a few minutes he was huffing and puffing and had to take a break. I said to him, “Dad, we’re here, and we can do it. You watch.” I could see him struggle to take a step back and accept our help, but he listened, and my brothers and I were very happy to help.
While he was in the hospital recovering from his extrapleural pneumonectomy surgery, I wrote him a letter to encourage him and to let him know what I was feeling. One thing that I asked him to do was to please open up to us and accept help from others – he is one that never asks for help and he takes care of everyone else before himself.
I wrote: “I have found out recently that talking about your feelings and anxieties and accepting help from others makes you feel so much better and it does not make you seem weak. It brings you closer to people. Who knows though, maybe you will return to your complete normal life, but please know that we are here for anything that you need, even if it is just making you a grilled cheese sandwich.”
My message and advice to other mesothelioma patients is to accept help and to not feel ashamed about it. Your friends and family want to help you – they don’t want to see you struggle. Like I said to my dad, it does not show that you are weak when you accept help, rather it brings you closer to the people who love you.
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