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Mesothelioma Recovery Requires Close Attention to Detail
Mesothelioma is a rare disease and is difficult to diagnose. Once diagnosed, some patients undergo surgery as part of their treatment plan. I’ve found over the years of treating patients after mesothelioma surgery, that there are many extremes in what people think is important, and what they don’t see as important.
Some of the symptoms that you should be aware of are dizziness, persistent coughing (more than you are comfortable with), shortness of breath, weight loss, weight gain (puffiness in your extremities), constipation, pain, weakness (not able to do what you could do a day or two ago), and fever. Paying attention to the way you or your loved one is feeling is important for a smooth recovery. Nutrition is also an important factor to monitor including how much food, and what types of food are being consumed. Also, ensuring the patient is abiding by the fluid intake requirements is important.
Medications and their side effects can also be an issue. When patients leave the hospital after surgery many are on pain medication. As everyone is different, it is important to pay attention to the constipation issue and follow a bowel regime. Often patients are on beta blockers for their heart rate and, sometimes as they get better, the dosages need to be adjusted.
Some of these points seem like they are simple, common sense things. It is surprising, however, how quickly they can escalate into serious issues when they are not addressed. It is important to listen to yourself: if something does not feel right, or if have a question about it, reach out. Call someone on your medical team and get the reassurance that you need.
A successful recovery is a team sport and you are the center of the team! Mesothelioma recovery can be tough, but together with your support system and your mesothelioma team preventable complications can be avoided.
Reach out if you have any questions!
If you have any questions regarding any aspect of your mesothelioma treatment, feel free to email me at [email protected].
ADAO’s Mission Impresses Mesothelioma Nurse
The Asbestos Disease Awareness Organization was co-founded by Linda Reinstein and Doug Larkin. This organization was founded by the courageous duo who watched their loved ones pass away from the terrible illness caused by asbestos: mesothelioma. Linda’s husband was diagnosed in 2003. He endured chemotherapy and had to undergo multiple surgeries where his left lung, pericardium and diaphragm were removed, and his diaphragm was replaced with goretex. Sadly, he passed away in 2006 leaving behind his wife and daughter. Doug Larkin also lost a family member to this dreaded disease, and now he works tirelessly to serve his memory.
Together, the two have taken their grief and turned it into a positive example of helping the mesothelioma community and in fighting the world of asbestos. They are more than just a couple of individuals trying to prevent the spread of asbestos: they know what it feels like to lose a loved one to this disease and they have seen it happen to too many other families. Linda and Doug have a mission to ban asbestos globally. The ADAO started small, but today it is a 501c nonprofit, and is the largest U.S.- based independent asbestos victims organization.
The vision of ADAO is to eliminate asbestos-related diseases, like mesothelioma. ADAO works with public health organizations, healthcare workers, and many others to help ban asbestos. ADAO has three initiatives: education, advocacy and community.
You can find Linda at most mesothelioma conferences reaching out to help others who have been affected by the terminal cancer and other asbestos-related diseases. This month, she led the 12th Annual International Asbestos Awareness and Prevention Conference in Washington DC.
Since 2005, the annual conference has brought over 300 speakers ranging from victims, lawmakers, and experts to share their information. Gathering so many experts can only bring more education, awareness and long-lasting relationships.
Thank you for all who continue to work hard at fighting this dreaded disease and at educating the world about the harm asbestos is causing in our communities.
By increasing awareness of asbestos, the hope is that other people’s loved ones will not suffer as theirs did. For more information about the good work from this organization, visit the Asbestos Disease Awareness Organization website.
Worker’s Memorial Day Is a Sad Reminder About the Dangers of Asbestos
April 28 is recognized as Worker’s Memorial Day. It is a day to remember those who have died or who have become ill because of their job, and is a time to look toward the future in building and requiring safer working environments for all.
You always hear on the news about tragic accidents that take employees’ lives far too soon. Unfortunately, as the mesothelioma community knows all too well, the workplace is not always the most harmless place to be. Many people who have been victims of mesothelioma were exposed to asbestos in the workplace. My Dad, Don Smitley, passed away at the age of 57 from mesothelioma. This disease is a direct consequence of exposure to asbestos.
Maybe this day is a good time to renew our commitment as well. By recommitting ourselves to the cause of removing all traces of asbestos from our lives, be it at work, at home, or at play, we can make a difference. The mesothelioma community has a goal to make this toxic substance illegal. Taking this on can be a key step in helping to eradicate mesothelioma.
My thoughts and prayers go out to all those who have lost a loved one in or because of an unsafe work space. Banding together, we can be the catalyst to make a change for the better.
Mesothelioma Patients May Question Their Mortality
He was in the ICU from a complication after his surgery. His journey with mesothelioma had begun just three months earlier. He had presented to his local doctor with what he thought was pneumonia- it wasn’t. Previously healthy, he was diagnosed with epithelioid mesothelioma. He and his family had researched mesothelioma, came to an academic center, had surgery. Things had been going well and then he had an unexpected complication – treatable – but unexpected.
Physically he was recovering, mentally he was devastated. He knew about the possibilities of complications since they had been explained in depth to him and he had accepted the risks of the surgery. Before the complication he was beginning to see that he and his family could cope with and live with mesothelioma. He was beginning to feel that he had regained control of his life. Now, he lies in the bed wanting to know if death was imminent.
The psychological toll that the complication had taken on him was worse than the physical setback.
As the nurse, I know that he will get better from the complication physically, I can point out all the evidence that it will happen, he is ex-tubated, his vital signs are good, he is not on oxygen, he will soon be transferred to the step down unit. All positive signs that he is on the mend.
What about his mental state? He had done everything that was asked of him after surgery, and had landed back in the I.C.U- what does that say about his prognosis? Once diagnosed with cancer, and when having treatment, finishing treatment, whether it be surgery, chemo, radiation, or clinical trial, in the back of every patient’s mind is the question, “When will I have a recurrence?” Every patient needs to process and deal with this possibility.
The way to help is to listen and support the patient. Know that everyone responds to complications differently. Point out the positives in the patient’s situation, for example, physically you are better. Acknowledge that it takes time to adjust to a diagnosis of cancer, and that there are ramifications. A cheery pep talk might not be appropriate, but simply pointing to the facts might help. Like every mesothelioma tumor is different, every patient’s reaction is different. It is important to accept that and adjust your approach.
I am happy to report that the mesothelioma patient in ICU did get physically and mentally better. He is adjusting – time, family love, and support can be the best medicine!
Mesothelioma Nurse Encourages Patients to Find Their Strength
Most patients who have mesothelioma will need to go to rehab facilities after surgery, or at different points on their journey. These experiences are as varied as the patients themselves. Recently, while visiting a patient in rehab, I noticed a sign that read, “Find Your Strength.” Having been to this rehab many times, it struck me that I had never noticed this sign before.
Reflecting on the message, and the mesothelioma patient I was visiting, it struck me how much physical and emotional strength is required to deal with mesothelioma. The physical strength can be quantified by how the patient is breathing, his oxygen level, how well he is walking, appetite, pain level, and generally how they are feeling. The physical strength to deal with mesothelioma often comes with time, therapy, and patience.
The strength to deal with mesothelioma on an emotional level, however, can be daunting. What are your coping mechanisms? Are you a talker? Do you exercise, run, swim, walk, and did that help you to deal with stress before your diagnosis? Do you know what your emotional strengths are?
During crises in your life, you deal with things that you never thought you had the strength to get through. Your support system may be helpful at this time, but you need to let them know what you need.
The mesothelioma patient that I was visiting seemed to have found his strength. Tucked away in a sunny corner of his room, with his eyes closed listening to his wife reading to him, I found it hard to believe he was the same person that had left the mesothelioma hospital one week ago. He had been weak physically and emotionally withdrawn. He had reluctantly agreed to rehab.
Now, the scene in front of me was of someone at peace. His wife was reading from a book of spiritual readings. He appeared to be reflecting on the message and her voice. As the visit progressed and we talked of all they had been through, he made a request: “Say a prayer for me.” As I responded yes, the sign at the entryway came to mind.
“Find Your Strength.” This patient and his wife found theirs together.
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