Author: Lisa Hyde-Barrett
Mesothelioma Patient Steps Outside of His Comfort Zone
We all have our own space, our own routines that we are comfortable with- people, stores, our personal routines – that bring us comfort. Being diagnosed with mesothelioma can jolt you out of your comfort zone.
This week I saw a patient who had stepped way out of his comfort zone. He had been diagnosed with mesothelioma a few months ago and had planned to have his treatment locally. But after he researched mesothelioma and found an advocate who advised him to head to a mesothelioma treatment center, he ended up on a plane in order to increase his survival chances. He had come by himself, to a strange city, without his family, to see if there was another option for him.
What makes some people more willing to get out of their comfort zone than others? While researching this I came across an interesting article: “The Science of Breaking Out of Your Comfort Zone (and Why You Should),” by Alan Henry. In the article, Henry defines comfort zone as “a behavioral space where your activities and behaviors fit a routine and pattern that minimizes stress and risk. It provides a state of mental security. You benefit in obvious ways: regular happiness, low anxiety, and reduced stress.”
Your comfort zone is your comfort zone. It is neither a good thing or a bad thing. When it is necessary to come out of our comfort zone, though, how do you do it? Leaving it can cause increased anxiety and risk. This can be a good thing or a bad thing. Sometimes it is a little of both.
Our patient has done well this past week, navigating the system, having tests, communicating it all to his family back home. Was he nervous coming to the mesothelioma center by himself? Yes, he was, but he did it.
Coming to a strange city knowing that you have mesothelioma, a serious cancer, is an extreme example of stepping out of your comfort zone. Sometimes when we step out of our comfort zone we do things that we are not totally comfortable with, but we surprise ourselves and do things we would not otherwise have considered.
Changing things up can lead to personal growth – and may even improve your life!
Nurse Hopes Patients to Enjoy Long Lives
Living with mesothelioma as a chronic illness is progress for patients with this rare cancer. Mesothelioma treatment has progressed to the point that some patients are living for many years. For all in the mesothelioma community, this is gratifying. This week, I was fortunate to see a patient who has been living with mesothelioma for over six years. He is living and doing what he wants to do, enjoying life, his family and his work.
Diagnosed over six years ago, the man continues to aggressively seek treatment for his mesothelioma. Shortly after his initial diagnosis he had surgery. He had investigated his treatment options and decided to come to a mesothelioma center. His doctors back home at his local practice support him and help him manage the cancer. When the treatment does not require specialty care, his mesothelioma team at the treatment center work directly with his local care team and he is treated locally.
He has been across the country in his search for innovative new treatments for his mesothelioma. He has had recurrences and a variety of treatments. His treatments have included surgery, chemotherapy, immunotherapy and radiation therapy – IMRT. He is willing to travel wherever necessary so he can extend his life. He speaks matter-of-factly that he expects his cancer to come back, but he has the expectation that there will be another treatment available to him. He expects to recover and resume his life.
Every day he wakes up he expects to have a good day. He is educated about his disease, but he is in no way surrendering to it. He continues to reach out to other mesothelioma patients. He remains optimistic for living a long, busy life with mesothelioma as a chronic condition.
Everyone’s journey with mesothelioma is their own. This patient‘s approach works for him, but it might not work for someone else. As we share stories of surviving and thriving with mesothelioma we draw hope that his story will become the norm.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].
Progress in Treatment Comes from Past Experiences
When patients and families are beginning their journey with mesothelioma, it is hard not to get discouraged when looking at survival statistics. The statistics are often interpreted as devastating, but, keep in mind that they are just that: statistics. Progress in the treatment of mesothelioma is being made slowly.
I have taken care of mesothelioma patients for years throughout their journey, whether that be in the intensive care unit, before their surgery, after their surgery, non-surgical patients and during all different phases of the disease. I can put faces and events to the different phases of the mesothelioma journey. And I still remember one patient from years ago who shows us how progress in mesothelioma care has been made, and how important it is to get to a mesothelioma treatment center.
Years ago, this man in his early 50s, who had worked in shipyards and was diagnosed with mesothelioma, traveled from out of state for specialized care for his mesothelioma. He had surgery, and was recovering well, but while still in the hospital he developed a blood clot that went to his lung, a pulmonary embolus. He became acutely short of breath and despite immediate medical intervention he died. It was a devastating complication, and he is still remembered by those who took care of him. Treatment has changed now, and it was by learning from the treatment of other mesothelioma patients that it has improved.
Now, in 2017, when any mesothelioma patient has surgery they are placed in pneumatic boots, that compress the legs to avoid blood clots. Patients routinely undergo non-invasive ultrasounds of their extremities to look for any blood clots on postoperative day seven. Walking is emphasized before and after surgery. If a patient has to stay in bed, they are placed on an anti-coagulant subcutaneous injection to help prevent any clots. Clots are screened for, and aggressively treated if detected.
This week, a mesothelioma specialist gave a talk and he referenced how important it is to come to a mesothelioma center. Although progress is being made, it is probably not fast enough for anybody. Yet, we have learned and progressed, and treatment is constantly being analyzed and perfected.
Patient and Caregiver Dealing With a Mesothelioma Recurrence
“Cancer that has recurred (come back), usually after a period of time during which the cancer could not be detected. Cancer may come back to the same place as the original (primary) tumor or to another place in the body. Also called recurrent cancer,” is the National Cancer Institute’s definition of recurrence.
Over the years, I have cared for many patients who have not only had to deal with the initial diagnosis of mesothelioma, but also with subsequent recurrences. Sometimes, like the patient I saw this week, recurrence is mentally challenging to the patient and the family. The patient, a man in his early 70s, had his disease return to the other lung, the non-operative side. He is physically weak and having trouble breathing. Mentally, though, he is alert but full of despair. His caregiver is angry and frustrated. It is hard not to be filled with these emotions after they have tried so hard to fight this disease with the best tools that are available, but still it has progressed and returned.
The caregiver was angry at the doctor, hospital, the rest of the family, anybody she came into contact with. Dealing with her anger, and his despair, can be very challenging. The focus needs to shift by turning the emotions into fighting the disease not each other. Fight the symptoms, the pain, the shortness of breath-make those the enemy.
While dealing with all of the emotion, the medical team must focus on the patient‘s desires. When asked what he wanted to do, the man said he wants to be home for his last days. Even while his team looks for ways to make this a reality, his caregiver cannot see her way for it to happen. It will take time and continuous support for both the patient and the caregiver to work through everything.
How do people cope with their emotions when mesothelioma returns? We have seen a variety of responses all unique to each patient. Visit the National Cancer Society web site for some very helpful advice and resources for the caregiver and patient.
Everyone’s mesothelioma and situation is different, and a recurrence, for some is just a setback that can be overcome both physically and emotionally. Many patients have progressed to where mesothelioma is treated as a chronic, ongoing disease.
The faces of recurrence are as varied as each individual’s journey with this aggressive disease. During these times it is the most difficult to remain positive. Reach out, there are resources and people to help you and your family get through the dark days.
2017 Calendar Mesothelioma Events
As progress continues to be made in the fight against mesothelioma, 2017 looks promising in continuing the march to a cure. For patients and families looking for more information on the latest developments, there are plenty of conferences to offer knowledge, along with support.
The Mesothelioma Applied Research Foundation is holding its International Symposium on Malignant Mesothelioma March 27 -March 29. The event will be co-hosted by the National Cancer Institute in Bethesda, Maryland.
The 13th Annual International Asbestos Awareness and Prevention Conference, sponsored by the Asbestos Disease Awareness Organization, is April 7-9 in Arlington, Virginia.
Following are other days and events held throughout the year that are intended to help bring attention to mesothelioma, and cancer in general.
- February 2, 2017- National Cancer Prevention Day
- February 28,2017- Rare Disease Day (NORD)
- May 20,2017- International Clinical Trials Day ICTD
- June 5,2017- 29th Annual National Cancer Survivors Day
- August 1, 2017- World Lung Cancer Day
- September 26,2017- Mesothelioma Awareness Day
You can also find caregiver recognition events and online support groups for both patients and families. For some it is impossible to get to these events, but it is possible to participate online. If you know of any, and would like the rest of the mesothelioma community to be aware of, please let us know.
Everyone is different, as is everyone’s journey with mesothelioma. Some people like to find out as much as they can about the disease, some go to events to enjoy the sense of community. Whatever your personal situation- support is available.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].
Sources:
- Mesothelioma Applied Research Foundation
http://www.curemeso.org/site/c.duIWJfNQKiL8G/b.8598593/k.D685/Homepage.htm - Asbestos Disease Awareness Organization
http://www.cvent.com/events/2012-annual-asbestos-awareness-conference/archived-e6277e3d443b4c059bed43fc0937b530.aspx - 13th Annual International Asbestos Awareness and Prevention Conference
http://www.asbestosdiseaseawareness.org/archives/40117
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