Mesothelioma Help Cancer News
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.
Mesothelioma Diagnosis – Where Do We Go From Here?
I remember the phone call so vividly: walking into the gym after a long day at work. My phone rang, and I just knew it was my mother. We were supposed to get Dad’s diagnosis at the end of the week – sure enough it was Friday and here she was calling. I dropped my bag, answered my phone, and bam, there it was. Mesothelioma. I froze. What was this? Neither my mom nor I had a clue as to what this cancer was all about.
I don’t remember if I was more scared and upset by Dad definitely having cancer, or by having no idea what my dad would go through with yet another type of cancer in his lifetime. I picked my gym bag back up and went straight home.
I talked to my mother on my way home. We cried, I listened to her tell me what the doctors said, and we took turns voicing our concerns. To my surprise, despite the news he got that day, Dad still went to work. I don’t know how my father has the strength that he has, I only hope it rubs off on me somehow because at that point I felt defeated. That night I decided to stay put in Philly at my place with my roommates. They gave me comfort that night and helped me to think through things logically, which in turn gave me strength.
Having fought cancer in the past, Dad assumed that once again he could stay in the comfort of his own home and local town for treatment. This was not an option since his past oncologist only worked with patients who had melanoma, and there were no oncologists in his hometown that specialized in mesothelioma. At first we thought that a doctor who treated lung cancer could treat him, but this was also not an option.
After an initial appointment with our family doctor, he recommended doctors in New York City and Philadelphia. This was very overwhelming to Dad because that meant traveling to one of the cities, long drives, traffic and more time off work. This was a lot to consider. My mother and I were very scared and stressed with waiting for a decision as to where to go. Dad did his research and listened to our family doctor about both places, as did my mom and I.
After researching both locations, the final decision was the Abramson Cancer Center of the University of Pennsylvania in Philadelphia. We chose Abramson mostly because of their great reputation, and the fact that they could get Dad in for his first appointment much sooner than Memorial Sloane-Kettering in NYC. Plus I live in Philadelphia, so if my parents really needed a place to stay, they could stay with me.
After Dad’s first appointment, the doctors were aware of what they were facing and could have a conversation about treatment options. The process of treatment happened very quickly and my father began his fight with this horrible cancer. Throughout this whole experience our family’s mindset and goal was to get Dad the best treatment out there.
I can say that Dad is in very good hands and his team of doctors has been wonderful from the beginning. They continue to provide the best possible treatment and are very thorough when explaining what their plan is and how each and every appointment goes.
Check back next week for what treatments my dad went through, and how he fared throughout them all.
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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.
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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.”
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