Category: Faces of Mesothelioma
Mesothelioma Patients Encouraged to Take the Time to Celebrate Life
For every person, not just those impacted by mesothelioma, each day is a cause for celebration. It is a chance to do things that you enjoy and be with people that you love. I once heard someone say that each day is another chance to “get it right.” What a profound statement! God gives us such a beautiful world full of things that we take for granted on a daily basis. It’s time that we really celebrate life!
Throughout Dad’s journey with mesothelioma, every milestone has been celebrated in some way. When he arrived home from his surgery at NYU Langone he came to our house first. We were greeted with a full refrigerator, dinners, gifts and visitors. At his home, there were balloons, cards and visitors.
When his chemotherapy was finished, there were cards. At the end of his radiation treatment, there was a party (that was sort of foiled when Mom and Dad arrived home a day earlier than planned) with cake and family. Every day, no matter the situation, you can find something to celebrate!
They say that getting life changing news, such as a mesothelioma diagnosis, can make or break you. Don’t let it bring you down! Every trying situation is an opportunity to better yourself and to find a valuable lesson in it. ’m not saying that every single day of your life will be rainbows and sunshine, but there can be good found in every obstacle. Trust God, rely on your faith, and He will bring you through!
Don Smitley Finds Comfort Spending Time with His Dog, Charley
I have mentioned my parents’ dog, Charley, in several posts. It’s time he got some attention! Charley is a five-year-old poodle-terrier mix who has become a light in Mom’s and Dad’s lives. He is sort of goofy (truth be told!) and always makes them laugh and smile.
The relationship between Dad and Charley is an interesting one. Throughout Dad’s mesothelioma, Charley has been his constant companion, never letting Dad out of his sight. He follows both Mom and Dad around the house. But once Mom leaves for work, they become a dynamic duo spending a lot of time playing, walking, watching TV, and napping in the recliner that they share.
Dogs tend to be a lot of company, and Charley is no exception. When you talk to him, he seems to understand every word that you say. So… we all find ourselves carrying on conversations with him from time to time.
He also seems to sense when you’re not feeling your best. Charley is usually pretty hyper, jumping on your lap and demanding attention. It was interesting that when Dad returned from his pleurectomy last February, Charley was extremely gentle and spent a lot of time just resting with him.
My husband and I also have a dog, Gus. He’s been a great source of comfort for us as well, always bringing happiness to our lives. Put Gus and Charley together, and you have a comedy show!
These animals are just one more aspect of our lives that we have to be thankful for. God works in mysterious ways; maybe he brought us our dogs to make us smile and realize that maybe laughter is the best medicine after all!
Caregiver of a Mesothelioma Patient Takes “Me Time” to Be at Her Best
When becoming a caregiver in any capacity for a loved one who has been diagnosed with mesothelioma, it’s easy to get caught up in your duties and forget to take some time for yourself. Remember, to be an effective “nurse,” listener, or friend, you have to be rested and centered. It’s important to give yourself some “me time.”
Even though I help Dad with his battle against mesothelioma, I make sure to take some time for myself. I spend a lot of time walking. It clears my head, allows me to relax, and exercise is always a way to make yourself feel good. My husband, Mike, and our dog, Gus, often join me, and Mike and I tend to talk a lot on our walks about anything and everything. It’s a great way to spend time together, laugh and just BE.
Now that the weather is turning warmer, I find myself on our porch swing quite a bit. To me, it’s simply relaxing. Since I was little, I’ve loved to just sit there and let my mind wander. That hasn’t changed.
Getting a massage every now and then is also something that helps me relax. It’s a more literal way of relaxation, getting all the tension out of your muscles. Yoga and Pilates are also some physical ways that help me to relax. Remember the importance of good nutrition as well.
Something else that I really enjoy that helps me on a much deeper level is attending Mass and events at our Church. God has brought us through and it’s important to keep an emphasis on your faith, no matter what. These activities help me to find clarity and peace, even when I’m at my most stressed.
In short, find something that you enjoy and do it. Read a book, go out to dinner, or watch a movie! Your loved one understands that you need some time to do things that you love. Include them if they’d like! Also, remember that there are support groups and counseling if you want to talk with others who are in your same situation. You are never alone.
Taking care of yourself will make being a caregiver easier. Also, make sure that you’re getting enough rest. Your relationship will be better (we all know how sometimes we can lose our temper when we’re tired or overworked) and your time together will be more enjoyable. Life is a gift meant to be lived and shared with others. Enjoy all aspects of it! God bless you all!
Mesothelioma Patients Housing Option During Treatments by Hope Lodge
When it was decided that it was time for Dad to have some further treatment, we put everything in God’s hands. The recommendation was 25 radiation treatments, over a course of 5 weeks, that would take place in New York City with Dr. Kenneth Rosenzweig of Mount Sinai Medical Center. Being away for such a long period of time is quite an undertaking, and we expected the monetary costs to be enormous. That was until we heard about Hope Lodge.
Hope Lodge is an amazing, beautiful facility funded by the American Cancer Society. They are located throughout the country and provide a free place to stay for people undergoing cancer treatment. There are strict criteria that must be met in order to be eligible, but we are blessed that Dad was accepted.
I must admit, my family was initially quite apprehensive about the Hope Lodge. When you hear that there is a free place to stay in NYC, you can’t be sure what to expect. Walking through the doors, we were pleasantly and completely surprised. We were greeted by wonderful volunteers and staff members who gave us a tour of the Lodge.
The sixth floor is the family floor equipped with a full kitchen, fireplace, entertainment center, and plenty of seating to visit with family and friends. There is a room for children, games for everyone’s use, a computer lab, meditation room, and library. It is a wonderful, calming atmosphere. This space is also used for events held by Hope Lodge. In the time my parents have been there, among other things, there has been a 100th birthday party for the American Cancer Society, dinners, games, and music, free to all guests and their families.
On this floor, there is also a balcony with plenty of space to sit outside and eat or relax. Looking to your left you see Madison Square Garden, with the Empire State Building to the right. There is a staff member on the sixth floor 24-hours-a-day to help you with any needs you may have. They are so kind and knowledgeable about the Lodge and area, and they are a great resource and friend to the guests.
We helped my family move into their beautiful, spacious room with a great view! They have their own bathroom and there is laundry and a full kitchen on every floor. These floors are only for the patient and their caregiver, allowing for a quiet, restful environment while you are receiving treatments.
My family has benefitted greatly from the services offered by the Hope Lodge. It is truly a Godsend and has made a tremendous difference in many lives. The Hope Lodge allows patients to receive lifesaving treatment they may not have been able to receive otherwise. God bless all those involved in the Hope Lodge program, and thank you on behalf of all families and patients you’ve encountered!
Managing “Adrenaline Rushes” with Medication
Those suffering from mesothelioma may encounter a strange phenomenon once in a while which I can only call an “adrenaline rush.” It has happened to me quite regularly over the years and recently when I posted about it on Facebook I was quite surprised that a few others have experienced it too.
I have no idea how it starts or why it happens, but I do know one thing: it can be a frightening experience. Even now that I am used to them, I still find myself scared.
I’m not sure whether they run in a pattern of time, but I do know that for me my normal temperature is 36.5C (97.7F), but when I go through one of these episodes my temperature can drop as low as 34.7C (94.5F). During my last four attacks, however, my temperature has only dropped to 35.6C (96.08F).
Sometimes they happen when I have gotten up in the middle of the night and there is a big change in temperature from being under covers in the bedroom to entering the cold tiled floor of the bathroom, or when I have been hot and come into a cool room. Whether this is the trigger I do not know. It starts by me feeling unsettled, then I feel that I can’t get air and my heart seems to start racing. I know the best thing is to try and sleep through this, but I can’t lie down because my body starts telling me that I can’t breathe. I have paced before, but I found this seems to make the heart race more. I can’t sit still, my mind is everywhere and I become clammy.
I am not an advocate of taking pills for the sake of them, but when these adrenalin rushes start I have found that taking a diazepam (marketed as Valium) tablet is the only way I can get through them.
I fluctuate between being too hot and too cold. Then I fluctuate between wanting to lie down and wanting to stand up. In the doctor’s waiting room I was hot and cold, on and off the chair, feeling tearful one moment and angry the next. He was running late and honestly I wanted to lie down and die.
The doctor took my temperature, asked me a few questions but I can’t really remember any of them, all I wanted to do was be knocked out to stop my mind from working overtime. He prescribed diazepam, not a tablet he likes to give but one that he knew would settle me. For me the medicine takes about twenty minutes to work, and during that time I try to relax. I typically then fall asleep, and wake up a few hours later after the attack has passed feeling much better.
I understand my body quite well and sometimes I believe these rushes are the start of a growth of a new tumour, maybe it’s my way of the body trying to tell me that all is not well.
It would be interesting to know if any other Mesothelioma patients go through this or something similar, and if you do, how you manage the effects. Feel free to comment below of your experiences.
Additional information about Adrenaline Rushes:
According to Livestrong.com, an adrenaline rush is a sudden increase in the secretion of adrenaline from the adrenal glands. When a person is under stress, these hormones are released to initiate the “fight or flight” response which often includes increased heart rate and an increase in the blood flow to essential organs. The cause of an adrenaline rush may be an imagined threat as opposed to an actual physical threat. An adrenaline rush can also be initiated by strenuous exercise, heart failure, chronic stress, anxiety or a disorder of the brain or adrenal glands, according to Livestrong.
https://www.livestrong.com/article/203790-what-happens-during-an-adrenaline-rush/
Symptoms of an adrenaline rush are similar to those of a panic attack. The American Cancer Society discusses panic attacks on its website under information about anxiety and fear that many people with cancer often face.
http://www.cancer.org/cancer/malignantmesothelioma/detailedguide/malignant-mesothelioma-treating-c-a-m
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