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Your message to us will be held in strict confidence. All requests for information by mesothelioma patients and their family members will be answered within 24 hours. Mesothelioma Treatment and Care Guides are sent to mesothelioma patients and families by overnight delivery.

Simple Questions

As a nurse, you never know what patient’s story will have an impact on you. I recently had the honor of meeting a patient who was undergoing a thoracentesis.

Thoracentesis are procedures done frequently for many reasons, in mesothelioma often patients have them at the beginning of their journey, and sometimes at the end of their journey for comfort. They can be done for diagnostic reasons, the fluid is sent for testing, or for therapeutic reasons for the comfort of the patient. The procedure is usually done with local anesthesia only and patients feel better afterwards. A thoracentesis is a relatively quick procedure which can take 50-60 minutes. It is ideal if the patient can sit up   The proceduralist then uses an ultrasound machine to find the fluid and inserts the needle under visualization. In the institution that I work in we usually limit the fluid draining to 1000cc’s. The needle is inserted into the pleural space between the lung and the chest wall. The goal is to remove excess fluid – usually there is approximately 30 cc in this space.

Mr. W. had one other thoracentesis in December of 2016. He was having one now because he was feeling short of breath. He was quiet and had a beautiful smile. It was evident without any questions or conversation his disease was taking over. As we explained the procedure we talked about his life and his family. He proudly told us he had 4 children. His eldest recently purchased a restaurant and was a big success. The pride he wore on his face was undeniable. He spoke of his daughter who would graduate from college, and planned to come home and stay with him this summer because he did not know how much time he had left. The silence in the room at this time was deafening. He continued to tell us how proud he was of his other two children and how he loved his wife. He told his story with humor and grace.

At this point, the young resident that was assisting with the procedure, asked him a simple question. How is your family doing with all this? Usually we think of these questions but they are not asked. People don’t like to talk about death and dying it can become the elephant in the room.   He was at ease with this question and almost seemed relieved that someone was willing to listen to him. He spoke how he was a different man now than he was 3 months ago. His physical appearance had changed and he was dealing with more physical obstacles. He is not always able to do the tasks that he used to do around the house. He has grown weaker. His appetite is poor and he is unable to maintain his weight, and requires a lot of rest. He was stating these changes as facts. He has high hopes for this procedure to improve his quality of life. Being short of breath and feeling tired he said gets old and is limiting.

For Mr. W. the procedure was a success, he felt better and was going to be headed home. He was anxious to get home with hopes that his quality of life improves.

Sometimes the simplest questions are the hardest to ask but do the most good.

– Lisa

Handling Challenges on Your Mesothelioma Journey

When challenges happen in life it can change our life’s plan. How we handle those challenges often can define your life for better or worse. “Challenges are what make life interesting and overcoming then is what makes life meaningful,” Joshua J. Marine.

For patients diagnosed with mesothelioma the way they handle the diagnosis and the reality that the remainder of their time on earth can be limited, can be a challenge. Like all of us, we know on an intellectual level that we are all going to die, but to face death and dying and make choices on the way we want to live out our final days, can require support and courage. Sometimes, and hopefully all the time, support can be found with family, friends, community and your medical team.

Medicine has recognized that there is a need for specialists to look at the big picture in a patient’s treatment. What is important to the patient? How are the symptoms of their disease affecting the way they live? Palliative care specialists are focused on what is important to the patient, not just in the context of their disease but in the context of their lives.

In the January 3rd, 2017 edition of the New York Times there is an article by Jon Moolallem about B.J. Miller a doctor who also is a triple amputee. The article is about Dr. Miller who is a pain and palliative care specialist, in a part of the article he tells the story of the tragic death of a young mesothelioma patient at the Zen Hospice in San Francisco. The back story of Dr. Miller’s life is woven into the story of how he became a physician, how he handled his accident in college, and his philosophy on living and on how we die. Palliative care focus is on relieving symptoms so that you can lead the best possible life. The article is well-written and worth reading.

The story of the death of Randy Sloan from mesothelioma at the age of 27 at the Zen Hospice is inspiring. By chance Dr. Miller and Randy knew each other as Randy had worked at a motorcycle shop and had worked on specializing a motorcycle for Dr. Miller a year before he was diagnosed with mesothelioma. Randy’s journey with mesothelioma was quick and devastating. He had an aggressive course that robbed him of his life very quickly. Through the Zen Hospice, Dr. Miller, his family, Randy’s death was on his terms. One of the things that Randy wanted to experience was having an ordinary day. A day he did not have to think about chemo, sickness, he was sick of being sick. Dr. Miller explained that the hospice house he ran was the best chance of living out his life the way he wanted to. Although the patient Randy was uneasy he did move in 5 days after his conversation with Dr. MIller. As he got comfortable his friends could be his friends, his mom could be his mom and he could live the way he wanted to.

How one person faced a challenge- his accident and amputations, became a doctor and continues to help other people face their challenges is inspiring. By allowing someone to face death the way they want, on their terms, he has made a difference.

However long a patient’s journey is with mesothelioma or any other disease, palliative care specialists remind all that it is the patient’s choice what treatment he undergoes and when he has had enough.

– Ellie

The Importance of Communication in Your Mesothelioma Journey

Communication is essential in life and even more so when dealing with a new diagnosis of mesothelioma. Dealing with the news on an emotional level and on an intellectual level can be overwhelming. Trying to educate yourself about this rare, very complex cancer is best done with support from family and medical experts.

A recent study found that 60% of people did not understand the instructions that they received from their doctor appointments. Often what is said and what is heard are very different. How do you make sure that you and your medical team are on the same page? One way is to bring someone with you that can also hear what is being said. When you are under stress and emotionally overwhelmed you are more likely to misread people. If possible you need to stay in the moment. The emotions of anger, fear and anxiety are all very normal responses. As you gather all the information that you need about your treatment, try to channel your emotions in a positive direction.

One of the difficulties of dealing with a new diagnosis of mesothelioma is there are no black and white answers. Questions are asked and sometimes it seems that there are no satisfactory answers. We are used to having some control in our lives, and suddenly you are on a path that has few signs on it.
What are you willing to do to fight this disease? This is a question that only you can answer after talking to your mesothelioma doctor. Do their recommendations work for you? Is the treatment plan one which you understand?

This past week, we observed two patients in two different situations. One was not going to come to a mesothelioma center- he was going to stay close to home and have his local doctor treat him. The local doctor was the one uncomfortable with his decision. He wanted the patient to explore some options in a mesothelioma center. He talked to the patient and his family multiple times, educated them on options and now the patient will be seen at a mesothelioma center. The second patient had scoured the internet, and found out as much information as possible, made her own appointment and was also going to be seen at the mesothelioma center.

Communication played a critical part in the mesothelioma journey of both the patients and families. Communication is a two-way street involving listening and talking. Before you make the decisions regarding your treatment options with mesothelioma, be sure to gather the facts, and listen with an open mind to your options. Being comfortable with your care team is essential. Being able to ask the tough questions and hear the answers that are given will help both the patient and the family deal with mesothelioma. Communication styles vary, know what your options are, and what you are comfortable with- it is your journey.

– Lisa

Mesothelioma and the Armed Services

armed services mesotheliomaThis past weekend I had the honor of attending the Army- Navy football game. Although Army won, it was an experience of a lifetime. As we observed American finest young men and women in the prime of their young lives, healthy, it seemed like a foreign thought that some of them in the future could become victims of mesothelioma by simply choosing to serve their country.

According to the World Health Organization web site, www.iarc.fr there are about 125 million people in the world exposed to asbestos in the workplace. All forms of asbestos are carcinogenic to humans. Approximately half of the deaths from occupational cancer are estimated to be caused by asbestos.

How did asbestos become one of the most significant environmental carcinogens on our planet? How does exposure to asbestos from many years ago cause people to be diagnosed with deadly cancers and others to develop pulmonary diseases such as pulmonary fibrosis, malignant mesothelioma of the pleura and peritoneum, and others exposed to asbestos not develop diseases?

Asbestos is a naturally occurring mineral fiber that is in rock and soil. There are six major forms of asbestos: chrysotile, crocidolite, amosite, anthophylite, tremolite and actinolite. “White” asbestos is chrysotile, “blue” asbestos is crocidolite. These two forms are the primary asbestos found, with chrysotile being by far the most prevalent.

The history of using asbestos as a fire retardant goes back centuries. At some points in recent history asbestos was used in different forms for food and many building materials. Asbestos continues to be used today in many products. Although not banned in the United States, it is regulated by the Environmental Protection Agency and the Occupational Safety and Health Administration.

Exposure to asbestos can cause cancer. Approximately 33% of malignant mesothelioma victims are veterans of the armed services.

On this late Fall afternoon looking at the future leaders of our military, we are proud of these young men and women, and wish them nothing but the best. The best does not include exposure to asbestos while they are doing their job.

– Lisa

Coping With Mesothelioma During the Holidays

As we approach the holidays for many people who have been diagnosed with mesothelioma or their family members, it is difficult if not impossible to “be of good cheer.”   The constant reminders of past happy holiday seasons and the uncertainty of how future holiday seasons will be affected weighs heavy on the patient and the family.

A few weeks ago, a mesothelioma patient who had been diagnosed two years ago died suddenly after contracting what was thought to be pneumonia. The timing of his death surprised his family as they had been used to him living fully with mesothelioma for the past two years. His death the week before Thanksgiving left a void that could not be filled and having the holidays approaching has left the family reeling. Dealing with the grief accompanying their loss and at the same time, the time set aside for reflecting and giving thanks, seemed overwhelming when we texted back and forth.

There is no wrong or right way to grieve. The first holiday season after a loss is going to be difficult, prepare yourself for that reality. One of the most important things to remember, as much as you might want to “cancel the holiday,” isolating yourself does not allow you the opportunity of creating a new tradition with others. Creating a new tradition might be the last thing on your mind and you might not feel that it is appropriate, but some people find comfort in changing traditions. Allowing yourself time to grieve during this time of year, to feel joy, anger, overwhelming sadness, while surrounding yourself with people that love and support you can be helpful. Taking care of yourself, exercising, and not drinking too much is also recommended.

Our patient’s family successfully made it through Thanksgiving. Acknowledging that this experience was different and difficult they also found strength in the support they found with each other. They are now planning how they will chart the upcoming Christmas Holiday season.

Two books that deal with this topic are: James Miller: How Will I Get Through The Holidays? Twelve Ideas for Those Whose Loved One Has Died.

Drs. Clarence Tucker and Cliff Davis: Holiday Blues- A Self Help Manual on Grief Through The Holidays

For family and friends trying to support someone during this difficult time, often acknowledging that it is a difficult time and reaching out and listening, is better than any gift you might buy. Our patient’s wife communicates best through texting; ask what way your family and friend are most comfortable communicating with and reach out.

Ellie

The Strength of the Mesothelioma Community

For some patients and families being diagnosed with mesothelioma brings them in contact with other people that they would never had met before, have little in common with, live nowhere near each other, are from totally different socioeconomic backgrounds. These relationships can be some of the most comforting for both the patients diagnosed with mesothelioma, and their families.

Recently while seeing a patient at a hospitality house near the hospital, one of the patients needed immediate medical assistance. After calling for an ambulance the patient was transported to the Emergency Room for treatment. The family was being supported by another mesothelioma patient and his family that they had become friendly with. Talking to the mesothelioma patient that was at the house after the other had gone to the E.R., the concern for the other patient was paramount. He and his family were quietly reflecting on the events, how worried they were about the other patient and his family. They were sharing stories of how they had met and how close they had become over the past few weeks. There was a bond between the families as well as the patients.

The sense of community is a powerful one in the small mesothelioma community. To be diagnosed with a rare cancer, seek treatment, and live with this cancer, requires support. Often the support comes from other patients and families. These bonds between people unite them in a way that is deep and meaningful.

As we enter the Holiday season in 2016, we are reminded in many different ways, that what unites us can be as simple and important as concern for others. Mesothelioma is a cancer for which there is no cure-yet. It can also remind us about how truly important our relationships are, as we give thanks this year.

– Ellie

Dealing with Anger in Your Mesothelioma Journey

Anger is an emotion that can develop any time during your journey of Mesothelioma. It often is the first reaction that a patient experiences after receiving a Mesothelioma diagnosis. Patient sometimes are angry about what it has done to their lives, or how they contracted this disease. Patients sometimes feel guilty about this emotion and do not know how to express it. These sentiments can be manifested and result in depression which also has to be monitored. Anger can be exhibited in many different expressions. Patients often will verbally lash out at the ones they love. They don’t blame their family and friends for their disease, but these caretakers and family members provide a safe repository for this anger.

We have been following a patient who has exhibited a lot of anger. He feels frustrated about his recovery. He is refusing to have family or friends visit him because his physical appearance has changed as he has lost a significant amount of weight. Every activity is a day’s event. The energy it takes and the fatigue he feels is overwhelming. He does what is expected but it is really hard for him. He also feels frustrated about relying on medicine to help him with the pain. He is angry about his overall situation and his frustration and anger is now having a negative effect on his caregiver.

These emotions are not right or wrong, unfortunately they are a by-product of this and many other diseases. Sometimes patients will express anger when they are actually feeling another emotion. Often anger is actually a reaction to sadness or hopelessness. If it all possible, it is best to avoid taking out anger on others. If you can direct your anger at the cause of the anger itself, rather than a person, there will be no hurt feelings. Sometimes it is hard to manage your feelings and counseling can possibly be helpful.  One on one or group counseling may be available.

Sometimes good can come out of having this emotion. Anger can turn into positive energy. Research has shown that anger can make us push on toward our goals. When used constructively it can make a patient more powerful. Expressing anger is justifiable and can strengthen relationships.

Anger is a strong emotion and sends a clear message that something has to change. Once we analyze the cause of our anger we can identify what changes need to happen and how to proceed to make these changes, which may include physically moving forward, getting counseling, or talking with loved ones about what you are angry about.

Anger can be positive; we just have to figure out the message it is sending us.

– Lisa

Mesothelioma and “Quality of Life”

One of the terms used commonly in many areas these days is “quality of life.” What does that mean? What is the definition?   According to the World Health Organization: “Quality of Life” is “- an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person’s physical health, psychological state, level of independence, social relationships, personal beliefs and their relationship to salient features of their environment.”

When diagnosed with mesothelioma or any other serious illness, a major concern is how will the disease and treatment impact the person’s quality of life. As progress has been made in healthcare choices that were never before options are being offered to patients. Are these choices what the person wants?

Quality of life is affected by several factors when dealing with mesothelioma. The factors would include stage of the disease and treatment side effects. The average life expectancy for patients with mesothelioma range from 12 to 21 months depending on when the patient was diagnosed, type of mesothelioma, treatment option they might decide on. The scenarios are many and as individual as the patient, family and mesothelioma tumor. Many patients after receiving treatment go on to lead very active lives including travel, working and enjoying children and grandchildren. Some patients elect not to receive treatment based on their wishes and circumstances.

There are sites on the internet that imply that surgery, chemotherapy and radiation can improve your quality of life. This can be true for some people but for others is not.   Often the symptoms you experience help you make the decision to opt for treatment. Often shortness of breath, pain or fatigue are catalysts for determining what treatment options are best for you.

There are many patients who opt for quality of life versus pursing all possible options for example author Randy Pausch in his book, “The Last Lecture”, describes how he had a terminal illness and was given months to live. He accepted his diagnosis and he chose how he would live his final days. His advice is to “break down the brick wall and fight for what you want”   During his journey he never gave up on hope and love.

In a study presented at the American Society for Therapeutic Radiology and Oncology by Dr. Benjamin Movsas, chairman of the Radiation Oncology Department at Henry Ford Hospital in Detroit he presented data that showed how important quality of life indicator is for predicting survival of patients with advanced non-small cell lung cancer. “We conducted two different statistical analysis including all the usual prognostic factors and either way, quality of life remained the strongest predictor of overall survival. What’s more, if a patient’s quality of life increased over time, we saw a corresponding increase in survival.”

How is your quality of life? Are you living the best possible life that you can? Are you happy? These questions and answers play an important role in the treatment of your disease.

Mesothelioma Awareness Day: A Nurses’ Perspective

“Asbestos exposure is the main cause of pleural mesothelioma. When asbestos fibers are breathed in, they travel to the ends of small air passages and reach the pleura, where they can cause inflammation and scarring. This may damage cells’ DNA and cause changes that result in uncontrolled cell growth. If swallowed, these fibers can reach the abdominal lining, where they can have a role in causing peritoneal mesothelioma.”   www.cancer.org

  • Asbestos exposure has been scientifically linked to causing malignant mesothelioma
  • Asbestos is not banned in the United States in 2016.
  • Asbestos is still imported and used in products
  • Asbestos can still be found in many, many homes, commercial buildings, and schools
  • Asbestos was used in the military on Naval ships and boiler rooms, leading to one third of all mesothelioma victims being Veterans
  • The incubation period from asbestos exposure to developing mesothelioma is estimated to be 15-50 years.

All these facts are commonly known about asbestos role in a person developing malignant mesothelioma by those in the mesothelioma community.

Although not banned, asbestos and asbestos exposure are regulated. Removal of asbestos from a building requires permits, inspections and trained qualified personnel.   It is imperative to remove asbestos in the right way for the health of all involved.

There is nothing new about any of the above information for people in the mesothelioma community. Recently in the newspaper it was reported about a local landlord who owns multiple properties, and was renovating them. Not only did he not obtain the correct permits, he allowed contractors to perform illegal asbestos work on four homes he was renovating. He was brought to court by the Attorney General of Massachusetts, and the Massachusetts Department of Environmental Protection and was fined. The reason for the $100,000.00 fine was putting workers and the public at risk for asbestos exposure. The suit was filed in 2012 and settled in 2016.

Knowing the potentially deadly consequences of exposure to asbestos, how does the mesothelioma community raise awareness? Educate the public? Put a face to this fatal disease? On Monday September 26 the Mesothelioma community will join to help educate people about the real dangers of asbestos, the potentially lethal ways asbestos kills, and the human suffering that involves all mesothelioma victims and their families. Since 2010, September 26 has been the Mesothelioma Awareness Day, as proclaimed by the U.S. Senate and the U.S. House of Representatives.

This year we encourage you to get involved, raise awareness and educate the public to the dangers of asbestos all around us.

– Ellie

Four Stages Of Emotions After Receiving My Mesothelioma Diagnosis

It is never an easy thing when your doctor tells you that your biopsy report is abnormal. In order for you to accept your mesothelioma diagnosis, you must go through many stages.

Stage 1: Denial

In the fall of 2007 while watching a Patriot game, my cell phone rang. Did you ever get a phone call and look at the number and say I have no idea who this is but… I need to take this call? It was my colon-rectal surgeon who had just done a bowel resection for diverticulitis. My ovaries and sigmoid colon were removed via a laparoscopy. I was recovering with minimal discomfort. I was almost one-week post-surgery at this time. Why on earth would my surgeon be calling me at 7:30 in the evening???   After 2 minutes of small talk, he states that there is a “little problem” with my pathology report.   “A little problem!!!” I repeat his words. “I don’t understand. I had diverticulitis, this is not a malignant disease.” He then tells me that both my ovaries had abnormal cells that they can’t differentiate. Now I immediately feel that ugly pit in my stomach. This can’t be happening. Denial, yes I don’t want to believe this. My slides were sent to Mass General for a second opinion. I was told it would be about 10 days to get their report. Unless you have been through this yourself, you have no idea how stress, sleepless nights, and anxiety take over your life.

Stage 2: Anger

After my long 10 days of waiting, I call for my report. Doctor is away until end of week; the secretary tells me “No!”.   I try telling the secretary that I need my report but am told I must wait until my surgeon returns as no report is in my chart. I can’t tell you how angry I became, yet there is nothing you can do. Wait…. 4 more days feels like eternity. I don’t want to talk to anybody about it. I have 2 sons who are in there 20s yet why tell them about it when I don’t really know what I am dealing with.   Anger has no limits!

Stage 3: Depression

On Friday afternoon, my dreaded phone call confirms mesothelioma in both ovaries. The pathologist states it is a rare finding and prognosis is guarded.   I’m shocked, sad, and in a fog. “Guarded, guarded,” I repeat the words over and over. I look up the definition. Not good. I refuse to just sit back and let this disease take over.

Stage 4: Acceptance

Well I don’t actually think I ever accepted it but I definitely learned to deal with it. I became my own advocate as no cases of peritoneal meso had been diagnosed at my hospital. I called numerous doctors who dealt with peritoneal mesothelioma. I was not going to let this disease take over my body without a fight. It was a tedious job but it was what I needed to do to feel comfortable with the plan of care I was going to take. It is indeed a rare tumor. I did end up traveling to New York for surgery and chemo.

In conclusion, it’s ok to deny your diagnosis, be angry at the world, and feel depressed. These are all stages we must go through to finally reach our accomplishment.

8 years and cancer Free. Yes!!!


About Julie Russell R.N.

julie-russellJulie Russell is an experienced Registered Nurse who is also a mesothelioma cancer survivor. Julie’s clinical expertise in nursing is in the area of the Cardiac Intervention. She has also been an instructor of Advanced Cardiac Life Support (ACLS) and Basic Life Support (BLS) for many years. Her varied nursing background includes roles as a nursing supervisor, educator and staff nurse.

Diagnosed with peritoneal mesothelioma in 2008, Julie has undergone surgery, chemotherapy, and become an advocate for herself and others. A mesothelioma diagnosis effects the whole family. Her two sons became active in the mesothelioma community as well. She is a passionate advocate for all patients, but peritoneal mesothelioma is a personal cause of hers. She will be a guest blogger for us. Julie will be sharing her personal experiences with peritoneal mesothelioma as she continues to live and work a full life. Since diagnosis, Julie has also become a grandmother. We invite you to follow Julie’s journey and feel free to contact her for any questions or support.

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Your message to us will be held in strict confidence. All requests for information by mesothelioma patients and their family members will be answered within 24 hours. Mesothelioma Treatment and Care Guides are sent to mesothelioma patients and families by overnight delivery.

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