Navy Veteran Finds Specialized Mesothelioma Care at Boston VA

Navy veteran Chuck H. was not a fan of the VA Health Care system — until he discovered how well it worked in Boston.

Chuck, who lives in tiny Charles Town, W.Va., traveled nearly 500 miles to meet thoracic surgeon Abraham Lebenthal, M.D., at the Boston VA, changing his opinion of medical care and dramatically altering the outlook toward his diagnosis of malignant pleural mesothelioma.

It was a trip, taken four times now, that was well worth the journey. As a veteran, he found the specialized, personalized care that he couldn’t find anywhere else.

“I can beat this thing now,” Chuck said confidently from his home, less than three months after major surgery in Boston to remove the pleura lining around his lung. “I’m not ready to go down yet. I told them at a deposition, ‘I’m 71 years old, and I plan to be around another 71 years.’”

Chuck, whose last name is being withheld over privacy concerns, is a mesothelioma survivor expecting to survive a real long time.

Navy Service

Chuck, who served aboard the USS Grand Canyon, the USS Norton Sound and the USS Holder during the Vietnam era, was frustrated by the VA care he had received closer to home in Virginia and then in Washington, D.C.

They had no answers for him there. They offered little hope. They struggled for months to even diagnose it correctly, leaving him resigned to the idea that he had just 9 to 12 months to live.

He still remembered being badly misdiagnosed almost 45 years ago by various Navy doctors when a kidney shut down, causing him years of pain. It was the same kind of frustration he felt at the local VA three years ago, when knee replacement surgery left him feeling like a neglected number on a medical chart.

He was wondering if this latest diagnosis was even worth the fight, until his youngest daughter dragged him to Boston. With some help from the Doctor Match program at Asbestos.com, Chuck connected with Lebenthal quickly.

“I’m a homebody,” he told Asbestos.com. “I didn’t like the idea of traveling anywhere, especially to Boston. But once I got there, Dr. Lebenthal, and the entire staff — was wonderful. He explained things in simple terms.

“The care I got was fantastic. I remember thinking, ‘This can’t be a VA. It’s too good. Everyone is too nice, too caring.’ It was a night-and-day difference from what I was used to.”

Chuck today sounds like a man primed to battle cancer, fueled by his family, his future and the confidence he gained by the care he received in Boston. His calendar is booked. Giving up, or giving in, is not an option.

Promises Made

“I’m living my life,” he said. “I’m not holding up on anything. There are a lot of things left for me to do.”

He promised daughter Suzanne he will be around to teach her two sons, twin boys Holden and Pierce, how to drive. (They are 3½ years old.)

He promised youngest daughter Charlene, an emergency room nurse at a nearby hospital, that he will be taking her on an Alaskan cruise — and be around to watch her get married and raise children.

He promised everyone he would start driving slower, and stop getting speeding tickets in his 2012 silver Chevy Camaro convertible he bought during his “mid-life crisis” two years ago. “That’s my baby,” he said.

He promised his brothers at the Fraternal Order of Eagles, the local community service organization where he works, that he expects to resume his duties as an officer.

He promised himself he would start fishing again, maybe go gamble at the Charles Town racetrack, or drive to see those relatives in Ohio that he hasn’t seen for too many years.

And of course, there is his home, where he lives with Babe and Sadie, his two dogs, and Kitty the cat. There is grass to cut, rose bushes to clip, a pool to keep clean, and cookouts to host.

It has been him and the pets alone ever since his youngest daughter grew up and moved out.

“My dad raised me on his own since I was 13 years old,” said Charlene, who lives less than a mile away. “He did a good job, too. He did it all.

“I think one of his biggest frustrations in all this, is that he has to slow down a little. He is used to doing everything around the house, on his car, in the yard. You’re not going to tell him he can’t do something.”

Special Care for Veterans

Chuck spent much of his life as a welder, first in the Navy and then in private industry. He worked with loads of asbestos products, thinking nothing of it, which led to his mesothelioma cancer decades later.

He went to Boston first for a consultation, then returned for a biopsy and later for the pleurectomy and decortication surgery earlier this year.

As part of his rehabilitation, the staff challenged him to get better, appealing to his determined side, pushing him gently, and pushing all the right buttons. An expected six-week rehab in Boston ended in less than three because he progressed so quickly.

“You could tell they really were on your side. You weren’t just a number,” Chuck said. “When I was leaving the Boston VA, I told them they should go to these other places around the country and show them how it’s supposed to be done.”

The care he received in Boston isn’t too surprising. Lebenthal is a veteran of the Israeli army. He speaks often on the need for special care of U.S. military personnel, particularly those with an asbestos disease likely caused in the service. His expertise in mesothelioma comes from working with renowned surgeon David Sugarbaker, M.D., at nearby Brigham & Women’s Hospital.

Lebenthal talked several times with both Chuck and his daughter Charlene before and after surgery, much like he does with other veterans and their families. There is an old-school feel to the care he gives to each case.

“I work with doctors every day in my job,” said Charlene, who has helped nurse her father back to health. “And you just don’t see the kind of care my father received. You leave there feeling good about things.”

A Family Wedding Shines a Light in the Darkness of Mesothelioma

The legendary Dr. Phil certainly got it right when he said, “When a member of the family gets cancer, the whole family gets cancer.”

What he is saying is that everyone in the family is affected by a cancer diagnosis. And how could they not be?

Cancer makes us painfully aware of the fact that we can no longer take our life or the lives of those we love for granted. When a member of the family gets cancer, all the trivialities that once cluttered our lives are stripped away, and we come to realize that the only thing that really matters is the love we share with those closest to us.

A Family United

On the day that my husband received his mesothelioma diagnosis, our three children were with us. They had waited in the car while we went in to see the doctor and were the first to hear the sad news.

Still reeling from the shock of his diagnosis, Brian told them that his illness was caused by the asbestos dust he had inhaled as a child and that he was not expected to live more than nine months at the most.

Their shock at hearing this was equal to ours, and as we sat cocooned in our car, grieving together, it seemed unbelievable to us that the asbestos dust Brian had inhaled 45 years ago could be responsible for the terminal diagnosis he had been given that day.

Our Family Had Never Been Closer

There are no words that could adequately describe the fear and sadness we were all experiencing at that moment. As a family, we had never been closer, and I was so grateful that Brian had found the courage to tell our children what was happening and that we were all together at this tragic time.

Unable to accept that Brian was going to die from his disease, we began making a plan about how we would save him. We talked about getting supplements to strengthen his immune system, changing his diet, looking on the Internet for treatments that were available, anything that could give us hope and take our minds off the grim reality.

Eventually, we drove back to my son’s home, where we had the sad task of telling the rest of the family about the diagnosis.

Nothing was the same for any of us after that day. Brian’s prognosis of three to nine months weighed heavily on all of our minds, and we found it hard to focus on anything else.

This changed, however, when our eldest daughter, Michelle, told us that she and her partner, Mark, were going to get married and that they intended to do this as soon as possible so that her beloved father could be present.

Something Happy to Focus On

This was wonderful news. We already loved Mark, and we were so happy that he and Michelle had decided to marry. Suddenly, we all had something exciting to talk about and to make plans for, and this was a very-much-needed diversion for us all.

Naturally, being a woman, my thoughts turned to what I was going to wear on the day. As the mother of the bride, I wanted to wear something really special. Fortunately, it did not take me long to find something I was really happy with.

There are some very special occasions in a mother’s life, and a daughter getting married is one of them. I loved helping Michelle plan her special day and grew very excited as everything started coming together.

Brian, too, was caught up in the excitement. He chose a dark blue suit for the day and looked wonderful in it. He spent a lot of time working on the speech he was to give and even managed to put in a few lines that would make everyone laugh.

It was amazing how the preparation for the wedding helped us all to focus on something positive, and we became even closer to each other during this time.

The Wedding Day Arrives

Michelle was a beautiful bride. I sat there proud as punch watching her, and when it came time for her and Mark to repeat their vows, I was taken back to my own wedding day and the vows Brian and I had pledged together.

When Michelle repeated the words, “In sickness and in health, until death us do part,” I thought of how very true those words were for Brian and for me, and it was hard not to cry.

Happy moments were ahead, however. Our daughter, Julie, who is a singer-songwriter, sang a very special song for her sister. And following this, there was a surprise in store for Brian.

Knowing that her father loved the bagpipes, Michelle had arranged for them to be played following Brian’s speech.

The speech he gave was amazing and full of his customary humor. Once again, I was awed by the courage of this very special man.

When the time came for the piper to arrive, Michelle asked us all to stand in a circle around the room. Brian, thinking nothing of it, complied, and moments later the pipers came into the room. All eyes were turned to Brian to see what his reaction would be, and we were not disappointed. His face was absolutely beaming.

A Celebration of Love

During the reception, I took a look at my three beautiful children: my son, Clint, and daughters Michelle and Julie, and thought how blessed I was to have them near. There was sadness beneath our smiles, but we were united in our love for Brian and our determination to bring him joy.

My beautiful children brought many smiles to Brian’s face over the following months. Each had their own unique way of bringing him pleasure and letting him know how much they loved him.

Living in expectation of Brian’s death was the cruelest torture for all of us. I had known and loved him for over 35 years; the children had known and loved him for all of their lives, and there could be no measure for our grief.

The saying that “time cures everything” does not really apply to grief. You cannot be cured of loving someone, nor can you be cured of missing them when they are no longer with you. Time, however, does ease the sharpness of emotional pain and eventually there comes a time when memories bring smiles instead of tears.

Cancer is a Journey for Both the Patient and the Caregiver

When cancer strikes someone we love, we are flung into an entirely different reality, one that we have been aware of but have never before experienced: The world of the sick and dying.

It’s a world of physical and emotional pain, hospital corridors, hospital beds and chemotherapy and radiation treatments. A realm where it doesn’t no matter who we are because we are no different than those who are around us.

It is a grim reality and a frightening world, and it is only when we cross over into this world that we become aware of how precious life really is.

Depending on the length of our life and the trials and tribulations that befall us, it is likely that we will experience being a caregiver and eventually being taken care of by a loved one in our lifetime.

This could be due to any number of reasons, including short-time illness or advanced age. Tragically, it could also be due to cancer. The high incidence of this disease around the world means many families will be affected by it. And as a result, many people are now caring for loved ones with cancer.

Becoming a Caregiver

Many people who are caring for a loved one with cancer do not think of themselves as caregivers; they are just looking after the one they love and doing the very best that they can.

This was true of me when my husband, Brian, was diagnosed with pleural mesothelioma. Though he had cancer, I did not think of him as a cancer patient, nor did I think of myself as his caregiver. As I carried out the things that were necessary for his well-being, I saw myself as none other than a loving wife living out the vows I had pledged to my husband on our wedding day:

“To love and to cherish, in sickness and in health, until death do us part.”

Irrespective of whether we see ourselves as caregivers, when we are living with someone who can no longer care for themselves, we are, in every sense of the word, a caregiver. The transition into this role can be difficult, especially due to the responsibilities that come along with it.

Responsibilities of Caring for a Loved One

  • Accompanying them to doctors appointments and to chemotherapy or radiation treatments
  • Helping them to make decisions about available treatments
  • Helping them to manage their pain and symptoms
  • Administrating medication
  • Assisting them in the bathroom
  • Helping them in and out of bed
  • Helping them in and out of a wheelchair
  • Helping them in and out of the car
  • Making special meals
  • Providing emotional support
  • Running the home
  • Taking over the financial management of the household

On top of the responsibilities mentioned above, there can be any number of things that need to be done while caring for a loved one with cancer, and it may become necessary to ask for some assistance.

Cancer is a Journey

Many cancer patients refer to their illness as a journey. The same could be said of those who are caring for a loved one with terminal cancer. In many ways, this journey is one of discovery, for it is only in times of tragedy that we become aware of our inner strength. And it is through this that we are able to rise above our grief and support our loved ones in their time of need.

Being needed is a reward in itself and we discover that it is a privilege to walk beside a loved one as they journey to the end of their life.

Living in expectation of my husband Brian’s death for the two years of his survival, was a torture beyond compare but along the way, I did find things to be grateful for and I always wrote these things into my diary so that I could focus on something positive.

Things I Am Grateful For

I cared for Brian at home.

This meant the world to Brian, to me and to our three children. Our home was never the house of the dying.  It was full of life and Brian was very much a part of it. Despite his illness, he remained active and alert and was not bed bound until three short days prior to his death.

I kept Brian out of pain.

Through the knowledge I acquired on the internet, I was able to put together a pain and symptom management routine that kept Brian’s pain and symptoms under control and dramatically improved the quality of his life.

I found the courage to carry on.

Thanks to positive thinking and my diary, I found the courage to carry on and to remain strong for Brian even on my darkest days.

I kept my two promises to Brian.

Upon Brian’s diagnosis, I had made him two promises.

1. He would not suffer unnecessary pain.

2. He would not die in the hospital.

Brian passed peacefully away in our home surrounded by all of his loved ones.

I found peace and strength.

The journey of grief often includes feelings of guilt and remorse over what could have been said or what could have been done. I am grateful that there were no such feelings for me.

I could not have said or done more for the man I loved as he traveled to the end of his life, and it is because of this that I have found the peace and the strength to go on with my life.

Blogging about Cancer Offers Physical and Psychological Benefits

It’s easy to feel alone when you’re diagnosed with mesothelioma. The 3,000 Americans diagnosed with the cancer each year rarely meet anyone else with mesothelioma. They rarely get to connect with someone else who can truly relate to their condition.

Unless they’re online.

A growing number of people with cancer are starting blogs, a Web log that follows their experience with the disease. One such blogger is Kasie Coleman, a mesothelioma survivor who balances family life with running her own bakery. Kasie has found blogging therapeutic and helpful in that it is helping her to process the experience and connect with others who can relate on a personal level.

“I’ve found more people who are diagnosed with it,” she said. “Because it’s so rare, I used to feel like I was the only one.”

Support from friends and family is important to anyone facing cancer. Knowing that loved ones are there to help and comfort in times of need can ease a cancer patient’s concerns about their present and future health. But knowing someone who is facing the same cancer can offer a sense of support that no one else can offer.

“To reach people who are going through the same thing — they can relate, I can relate,” Kasie said. “Most people say ‘I feel sorry for you,’ but to know someone living with it and to know that not everybody is dying from it, that’s been the most helpful to me.”

Patient Blogs Meet Unique Needs

Mesothelioma patients aren’t the only ones taking advantage of their Internet connection. A 2011 survey by Pew Research Center reports that of the Internet-using adults in the United States:

  • 27 percent track health indicators online, such as symptoms or side effects.
  • 34 percent read about someone else’s health or medical experience online.
  • 18 percent have gone online to find others with their health concerns.

Many of these people are looking for health information, answers to medical questions, or someone else who might have their diagnosis or symptoms. Patient blogs are among the primary places people turn to for online medical information outside of sources like WebMD.

Many patient bloggers spend a lot of time researching their condition and then share what they find on their blog, eliminating some of the legwork for others. Patient blogs also serve as a place for people with cancer to track their health and responses to treatment. By some estimates, there are more than a million health bloggers.

One patient blog platform, called CaringBridge, is widely used by people facing medical issues to keep friends and family updated. Kasie used CaringBridge to keep her family up to date while she was undergoing treatment for mesothelioma.

“It saved me from having to say the same thing a hundred times over,” she said. “You get tired of saying it over and over.”

Writing for Health

Writing and journaling have long been viewed as therapeutic tools. According to the Center for Journal Therapy, reflective writing emerged as a form of therapy in the 1960s.

In recent decades, clinical trials on the benefits of reflective writing were published. Some of them found that people with cancer who used writing therapeutically reported better physical health, reduced pain and required less health care services. Other studies reported the longer-term benefits of expressive writing, including:

  • Improved immune, lung and liver function
  • Fewer stress-related doctor visits
  • Improved mood
  • Reduced blood pressure
  • A sense of better psychological well-being
  • Improved working memory

Studies conducted by Dr. James Pennebaker found that writing about emotionally challenging events or feelings for 20-minutes time period over three to four days increased immune system functioning. Pennebaker’s studies suggest that writing may play a role in the body’s ability to process stress in a healthy way. Reduced psychological stress as a result of reflective writing could reduce the overall amount of stress placed on the body.

Writing to Connect and Heal

Among the most beneficial aspects of blogging that mesothelioma patients enjoy is the rare opportunity to connect with someone else who has mesothelioma. At the end of blogs are comment forms where readers can leave a message in response to the blog.

“The rewarding part is when people comment and leave responses,” Kasie said. She finds it exciting to know that others with mesothelioma are reading her words even though she’s never met them. Her family and friends are a great source of support for her, and so are the comments she receives on the blogs she writes.

Kasie said blogging also helps her to slow down and process what happened to her.

“The blog, it keeps me grounded,” she said. “I get so busy with the bakery and everything, and I live life so normally when I sit down to write the blog.”

Being a mother, a wife and a business owner keeps her so busy that she rarely took time to recognize what happened to her until she started blogging.

“Sometimes it can be overwhelming,” she said. “It reminds me of what I’ve been through, what I lived with, because I tend to forget. When I stop to write, it’s like ‘Wow, this is a big deal.’ Other people see it as a big deal, but I don’t because I’m so busy all the time, I never stop.

“When I sit down to write, I’m able to write the article in no time because it starts to flow, because I take the time to stop and concentrate on that.”

A 2012 study surveyed patient bloggers about the benefits of blogging about their health experiences. Participants reported that blogging increased their connection with others, decreased isolation and offered a forum to share their medical story. The patient bloggers also reported that writing made them gain insights about their experience that fostered a sense of purpose and a sense of greater meaning.

Kasie can relate. She said blogging about her experience has helped her to gain a different perspective.

“It’s kind of  like sitting in your subconscious,” she said, “and when you sit down and have to write about it, it just reminds you of how precious life is.”

Leave a comment for Kasie below, or join the conversation on Facebook.

Asbestos Victims Fight Proposed Changes to Toxic Substances Law

Much to the mesothelioma community’s dismay, asbestos is not banned in the United States. But the Toxic Substances Control Act (TSCA) does limit how asbestos is used. Asbestos victim advocates have long supported strengthening the TSCA. Now, for the first time since it took effect, the U.S. Senate is considering major changes to the law.

But asbestos victim advocates worry that the proposed changes would make the TSCA less effective.

What Is the Toxic Substances Control Act?

Congress passed the Toxic Substances Control Act in 1976 to regulate the manufacturing and use of toxic substances. Specifically, the law gives the U.S. Environmental Protection Agency (EPA) authority to collect safety data and issue regulations for a variety of toxic substances, including asbestos. The EPA’s regulatory authority is broad and ranges from imposing testing and labeling requirements to banning substances.

According to the EPA, it has used its authority to establish standards “to prevent chemicals from posing unreasonable risk.” But asbestos victim advocates and other critics argue that those standards don’t do enough to prevent the unreasonable risks posed by asbestos.

What’s Wrong with the TSCA?

Perhaps a more accurate question is: What went wrong when the EPA tried to use its powers under the TSCA?

To the EPA’s credit, it attempted to ban most asbestos-containing products in 1989, following a decade of research and public hearings. But after a group of corporations filed suit to block the EPA’s “Asbestos Ban and Phaseout Rule,” a federal appeals court rejected key portions of the rule that would have protected the public from the dangers of asbestos. Although the court agreed with the EPA’s finding that asbestos is a hazardous substance that presents serious risks in a variety of industries, it held that the EPA lacked substantial evidence to support a ban.

With its hands tied by the 1991 court decision, the EPA abandoned its plans to ban a variety of asbestos uses, including its use in gaskets, roof coating, clothing, floor tile and disc brake pads. But the decision did leave the EPA room to ban the use of asbestos in a few products such as corrugated paper, flooring felt and rollboard. It also left the EPA free to ban new uses of asbestos after 1989.

Critics argue that the court’s decision slowed down the EPA’s efforts to restrict the production and use of toxic substances. According to a GAO report, the EPA had only restricted five chemicals by 1994. That number includes the asbestos regulations which were scaled down. Critics widely consider the EPA timid when comes to its willingness to exercise power under the TSCA.

Will Amending the TSCA Help?

In May, Sen. Frank Lautenburg of New Jersey introduced a bill to amend the TSCA. The bill, known as the Chemical Safety Improvement Act (S. 1009), purports to “improve the safety of consumers” and “ensure that risks from chemical substances are adequately understood and managed by modernizing title I of the [TSCA].” But critics and asbestos victims and advocates are skeptical that the bill would actually fulfill those purposes.

Among other things, Title I of the TSCA governs:

  • the testing of chemicals;
  • the 90-day notice manufacturers are required to give the EPA before producing or introducing a new chemical product into the United States ;
  • the EPA’s regulatory controls for hazardous chemicals;
  • procedures regarding how the EPA gathers information and handles confidential business information;
  • the extent to which parties can challenge the EPA’s rules in court; and
  • the extent to which EPA rules take priority over state laws (known as “preemption”).

Bill sponsors say S. 1009’s amendments to the TSCA would include:

  • requiring safety evaluations for all chemicals and labeling of health and environmental risks (e.g., from “low” to “high” risk);
  • giving the EPA authority to take action against unsafe chemicals;
  • requiring the EPA to conduct transparent reviews and measures to manage risks;
  • requiring safety screening for new chemicals;
  • allowing the EPA to get health and safety information from manufacturers, but also requiring it to avoid duplicative testing by relying on existing safety information from manufacturers first;
  • encouraging scientific innovation; and
  • amending TSCA’s preemption and judicial review provisions.

But S. 1009 reportedly has no support from environmental and public health advocates. The lack of support is due in part to Sen. Lautenburg poor reputation among environmental advocates. But critics also say that the proposed legislation is an industry-backed measure that sacrifices safety for profits.

In July, the Senate Committee on Environment and Public Works held a hearing on the bill. Witnesses included environmental and toxic tort attorney Robin Greenwald of Weitz & Luxenberg, who made the following observations about S. 1009:

  • The bill assumes that chemical manufacturers put public safety first. But history shows a pattern of deceit in the industry when it comes to dangerous substances like vinyl chloride, polychlorinated biphenyls (PCBs) and asbestos.
  • S. 1009 could effectively prevent people from filing lawsuits caused by exposure to approved chemicals. It also makes it difficult to challenge the EPA’s labeling of a substance’s risk.
  • The bill would set the bar and costs high for the EPA to impose restrictions on a chemical substance.
  • S. 1009 makes it easy for manufacturers to label information it gives the EPA confidential. This could effectively block public review and comment. At the same time, the bill makes it harder to question the validity of any decision to label a substance low priority.

The hearing testimony and criticism by victim, health and environmental advocates seem to echo the same sentiment: S. 1009 is a missed opportunity. After decades of continued abuses and cover-ups, lawmakers are considering a measure that seemingly offers more protection to the manufacturers than to public. If passed, the bill will likely have the same dampening effect on EPA willingness to ban toxic substances as the 1991 court decision to reject the Asbestos Ban and Phaseout rule.

But there is hope that the bill won’t make it far, at least not in its current form. Committee Chair Barbara Boxer’s hearing statement noted the need to strengthen EPA’s regulation of toxic substances and listen to asbestos victims and others who have called for better product safety. Senator Boxer is widely considered the strongest advocate for environmental and health protection to occupy the chair in many years.

S. 1009 is still sitting in committee. We’ll keep you updated on its progress.

Survivor & Navy Verteran Itching to Get Back on the Water

John Conway is already contemplating a marinate recipe for the mahi-mahi he expects to grill when he returns to Florida and hops on his boat this fall, cruising into the Atlantic to start deep-water fishing once again.

He is planning a future.

Malignant pleural mesothelioma may have dominated his life recently, but giving in or giving up — is the last thing on his mind.

“I’ve got a lot more living to do,” he said from his home in Massachusetts. “A lot more fish to catch.”

And a lot more golf to play, more target practice to take, more things to fix, and a whole lot more hugs to give Mia, his adorable 10-year-old granddaughter.

“Yes, he’s got a lot to live for,” added his wife, Pat. “We intend to see he gets that chance.”

Conway, 69, is a 19-year Navy veteran whose ships were part of the Cuban Missile Crisis blockade, and later the Vietnam War, serving his country proudly and heroically, never considering that his time at sea would come back to haunt him decades later.

A Navy Boiler Technician

He worked as a Navy boiler technician chief on the USS Wasps (CVS-18), where he likely was first exposed to the asbestos that led to mesothelioma, a rare but aggressive cancer that sidetracked his life.

After serving primarily on four different Navy ships USS Wasps, USS John Paul Jones, USS Dale and USS Puget Sound — he left for the Merchant Marines, where he worked for 24 more years before moving into what he expected to be a long and happy retirement.

“I grew up wanting to be in the Navy, probably since I was 12 years old,” he said. “I was proud to be there, proud to serve. It was fun, too. It took me around the world three times. I never thought about any long-range danger.”

Unfortunately, Conway served at the peak of the asbestos era, when ships were covered from bow to stern with asbestos products, particularly where he often worked.

He was part of a crew that assisted America’s historic space program, on ships that retrieved Mercury, Gemini and Apollo space capsules. Yet he also was part of a crew that stripped the asbestos insulation off the WASP’s below-deck steam pipes, unknowingly inhaling the toxic asbestos fibers.

“It used to look like it was snowing down there,” he said.

John Conway, Navy Veteran and Mesothelioma Survivor
Dr. Jacques Fontaine sits down exclusively with Asbestos.com to talk about the treatment options available for mesothelioma patients.

Diagnosed in 2012

Conway was diagnosed with mesothelioma in July 2012, more than 40 years after he was first exposed, yet another example of the long latency period of this aggressive cancer.

“The pulmonologist told me I had a year to live,” he said. “When I got the news, I was devastated. This is not easy.”

“I cried my eyes out every day for a week,” Pat said.

The Conways, though, fought back. They found Brigham & Women’s Hospital and mesothelioma expert David Sugarbaker, who spearheaded their medical care in Boston. The Veterans Assistance Department at Asbestos.com guided them quickly through the often-frustrating VA claims process, letting them focus on the medical issues.

“When you first get the diagnosis, and start reading about the disease, it’s not pleasant. The more you read, the more depressed you get,” Pat said. “It was like walking through a dark tunnel, looking and searching for answers. We’re fortunate, very fortunate, to find the right people. Asbestos.com was a big help there.”

Conway endured nine rounds of chemotherapy, split between Boston and Florida. His aggressive treatment approach was sidetracked temporarily when he sustained a mild heart attack. He had surgery in January that removed the pleural lining around his lungs and all visible tumors on the chest wall.

His latest CT scan was good because no new tumor growth had appeared. He has more tests scheduled soon. In the meantime, his strength is slowly returning.

Ready to Fish Again

He takes walks twice daily now, hoping his endurance will return. Pat often walks alongside him. Sometimes, it’s daughter Lauren. Sometimes, it’s son David. And sometimes it’s granddaughter Mia.

“We’ve had good days, and not-so-good days. There have been a lot of ups and down. Our hope is that John continues to progress, and we can get our life back to normal again,” Pat said.

The couple also is making vacation plans for a European cruise before heading back to their home in Florida. Conway spent much of his career on the water, and he still hopes to spend much of his retirement there, too.

“Mahi is still my favorite,” Conway said. “Marinate it in Italian dressing overnight, and put it on the grill. That’s a tough one to beat.”

John & Pat Conway

Mesothelioma Treatment Decisions, CAM Therapies and Relationships

There are a variety of reasons why mesothelioma patients and their family members become interested in Complementary and Alternative Medicine (CAM) therapies.

Some have a lack of faith in Western medicine or in our current medical system. Others want to avoid the side effects or long-term effects of traditional cancer treatments like surgery, chemotherapy and radiation therapy.

Believing in the mind-body connection leads some cancer patients to practice stress management techniques like meditation and relaxation. Other cancer patients struggle with the lack of control they feel receiving traditional cancer treatments and choose CAM because they want more control over their treatment plan.

Loved Ones Want to Help

When a loved one has mesothelioma, it is understandable to want to do something to help. Investigating treatment centers, treatment options and CAM therapies can be helpful to the patient at a time when they feel overwhelmed with their diagnosis and decisions.

However, many people with mesothelioma report that their loved ones can have strong opinions about which treatment options the patient should pursue. The reasons why these opinions can be strong is because of the concern and love that they have for the person with mesothelioma and fear of losing them to the disease.

Some mesothelioma patients have reported that they feel overwhelmed and distressed when friends and family members suggest or even pressure them to pursue different treatment options.

If you want to help your loved one with mesothelioma investigate traditional treatment options or CAM therapies, ask them first if they want your assistance. They may welcome the help if they feel overwhelmed with navigating the health care system or making sense of treatment options.

Or they may want to be in control of that research and their personal health care information. Accepting a loved one’s treatment decision regardless of whether you agree with that decision is one of the most supportive things that you can do.

Patients Need to Set Some Limits

If you have mesothelioma and feel overwhelmed by loved ones sending you information about your cancer, treatment options or you are receiving unsolicited advice about what you “should do,” it may be time to set some limits with your loved ones.

A good place to start is to say that you appreciate their concern and the information they provided to you, but all you really want is their support of whatever treatment decisions you make now and in the future.

Everyone with a diagnosis of mesothelioma has challenging decisions to make about what kind of treatment to undergo throughout their cancer journey. Accepting whatever treatment decisions the patient makes can make a huge difference in how supported and loved they feel as they fight their cancer battle.

This material was shared in the recent mesothelioma online support group.

Memories from a Country Music Festival Still Warm My Heart

Ask anyone if there is something that they would like to do before they die, and inevitably they will come up with at least one thing that they have always wanted to experience but have never got around to doing.

Some people have a “bucket list” of yearnings, and the extremes could be as exotic as traveling to foreign lands or as simple as learning to cook Chinese food.

Time and money are not always the culprits for our procrastination when it comes to actively pursuing the experiences we crave for. More often, it is because we do not want to move out of our comfort zone.

Though most of us get bored doing the same things day in and day out, we find comfort in our known routines, and it can be a daunting prospect to put ourselves into a position where we feel uncomfortable and vulnerable.

Sadly, this often results in us not opening ourselves up to so many of life’s joys.

Taking on a new challenge does take a certain amount of energy, and it can also take a lot courage to move out of our comfort zone and try something different. Something, that challenges our brain and our body and teaches us something new.

It could be as simple as doing a course at the local college, joining a craft group, taking a Chinese cooking class, learning yoga or taking that holiday to a place you have dreamed of going to.

Unfortunately, many people do not think about their bucket list until they are facing the end of their life and it becomes obvious that there is limited time to do all of the things that they would like to do.

The same applies to when a loved one is facing the end of their life, and we are made painfully aware that there is limited time to do the things that you have always dreamed of doing together.

When Brian was diagnosed with mesothelioma and given three to nine months to live, I was determined that one of the things we had wished to do together would come true.

A Country Boy at Heart

Brian was a country boy at heart. He loved the easygoing lifestyle of the far north of Australia and the fishing and crabbing opportunities that came with it. He also loved having a few beers with his mates and listening to country and Western music.

Country and Western music was always being played in our house, and our children grew up with the familiar strains of Kenny Rogers, Dolly Parton, Slim Dusty and a host of other country singers playing on our stereo. Though I had no favorite singer, Brian’s favorite of all time was Slim Dusty.

Over the years, Brian had often mentioned that he would love for us to take a trip to Tamworth during one of their music festivals. I had agreed that it would be a wonderful thing for us to do, but for some reason or another we never got around to doing it.

Making Our Wish Come True

 The city of Tamworth, located midway between Brisbane and Sydney on the east coast of Australia, is known as the “country music capital of Australia” and is renowned for the Country Music Festival it hosts in each year.  Held over a two-week period in late January, it is the second biggest country music festival in the world.

Fortunately for us, the Tamworth Country Music Festival was due to commence not long after Brian was diagnosed, and since he was well enough to travel, we decided that we would make the trip.

I immediately set about making travel plans for travel and accommodations, but soon learned that this was not going to be as easy as I had anticipated. Unbeknownst to us, people had booked their accommodations in Tamworth a year in advance of the festival, and all of the hotels, motels and caravan parks were already booked out.

We believed it may not be possible for us to go, until a travel agent gave us the contact details of a lady who took in private boarders during festival time.

Once we had made contact with her and had secured our accommodations, things started to come together. Excited about our trip, I began searching for information on the Internet about the festival and which well-known singers were going to be performing.

I could not believe my eyes when I read that a Slim Dusty was putting on a concert, and decided to book two tickets in advance without telling Brian. Knowing how much he loved Slim Dusty, I wanted this to be a special surprise.

Tamworth was amazing. Everywhere we turned, there was a band playing or a singer strumming a guitar, and the whole mood of the place was one of excitement. There was so much to do and so many wonderful entertainers to listen to. We wandered up and down the streets in our cowboy hats, just taking it all in and enjoying this special time together. 

And then came the time for Brian’s surprise. I had held off telling him about Slim Dusty until the day of the concert, and I was bursting as I waited to see his response.

Brian’s joy at meeting Slim Dusty in person, and hearing him sing all of the songs that he knew so well, was all that I had hoped it would be. I watched Brian’s face as much as I watched Slim Dusty perform, and I couldn’t get enough of his smile. We went up to Slim Dusty after the concert and shook his hand. I think it was one of the most exciting times in Brian’s life.

Memories of our time in Tamworth still warm my heart, and I am so glad that we managed to fulfill at least one of our dreams before Brian passed away.

Living for the Moment

Brian’s illness and death have forever changed the way I look at life. I have found out the hard way how quickly the gift of life can be taken from us, and now, to the best of my ability, I do the things that I have my heart set on, as soon as I possibly can, rather than putting them aside for a rainy day. 

Rainy days don’t always come.

Life is so precious and so full of opportunities to love, to learn and to grow, and I am determined to grab everything that life offers me with both hands.

What is on your bucket list? What is keeping you from doing it? Share your thoughts on Facebook.

Survivor Patricia Powell Hargrett: Faith Gets Her Through

A smile sweeps across Patricia Powell Hargrett’s face. She’s just been asked about her 25-year career teaching elementary school children.

“I miss the children so much. But I don’t miss the paperwork,” she said, and chuckled.

Her home is adorned with memories of a life lived fully. A 2005 Teacher of the Year trophy and an oversized Mother’s Day card sit on the shelves, and pictures of her children and grandchildren scatter the walls. All evoke a sense of fulfillment.

Never once amid those 25 years did Patricia suspect that teaching in the public school system could expose her to a toxin that would one day threaten her life.

And that’s not the only place she was potentially exposed.

Her husband of 44 years, Coolidge “Jerry” Hargrett, served in the Air Force and brought Patricia with him when he was stationed in Germany. They had a child in Germany and enjoyed the time they spent in the country, totally unaware that asbestos products were commonly used on Air Force bases and in military housing.

A Bright Start in Chicago

Patricia and Jerry met at a Chicago college and were married right before Jerry was sent to Germany. Upon returning to the United States, they both went back to school and continued to grow their family with the adoption of two children, a brother and sister.

Both interested in education and public administration, Patricia became a public school teacher and Jerry became a police officer. They enjoyed rearing their three children and watching them graduate college, have children and explore life’s opportunities. One of their sons, Chrisdon Hargrett, a track star in the 100 and 200 meter dash, competed in the qualifying semifinals for the 2008 Summer Olympic Games.

After 25 years of teaching children from more than 25 different countries, Patricia retired and remained involved in her community through church events and other activities.

Jerry continued higher education at institutions like Harvard University and Rollins College, worked other public service jobs, and for years now he has been an adjunct teacher for Columbia College. They joke around about how many times he has retired, which is upwards of three or four times now.

But when Patricia received her diagnosis in October 2012, Jerry knew it was time to retire for the last time.

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An Annual Physical Made the Difference

After an ordinary annual physical exam, Patricia was told that her calcium levels were abnormally high. Her doctor sent her to another doctor, and the follow-up tests led to a shocking diagnosis: peritoneal mesothelioma.

It was the first serious medical concern anyone in her family had to face. And they made every decision following that diagnosis as a family.

Patricia was lucky. They caught her cancer early, while the tumor was just beginning to form. Her story stresses the importance of annual checkups as a form of preventative medicine, especially for anyone who may have worked around asbestos.

Opting to work with the physicians at Orlando’s MD Anderson Cancer Center, Patricia underwent cytoreductive surgery to remove as many cancer cells as possible from her peritoneum, the protective layer that lines the abdomen. Surgery was followed by four rounds of chemotherapy over several weeks, each session lasting two or three hours.

Patricia spent about two weeks recovering at MD Anderson, and then returned home to a loving support system. Always thinking of ways that she can serve, Patricia started a nonprofit project while recovering from cancer treatment. Dubbed Warm Necks, she knitted 45 scarves for the Coalition of the Homeless while recovering and hopes to donate more scarves again this winter.

Patricia received so many cards from friends and neighbors during recovery that she had to store them in a huge box. From freshly cooked meals to helping out around the house, Patricia received support in countless ways.

“All my neighbors, all my friends  . . . I didn’t have to want for anything,” she humbly shares. “I’m always used to doing for other people. I’ve been doing that my entire life. And when this happened, it seemed like you really don’t know how much people care until something like this happens.”

A Return to Living Life Fully

About two months ago, Patricia started driving again. People tell her all the time how great she looks, that they’d never think she recently faced cancer. She’s teaching her husband how to play the piano and they love to travel and spend time together dancing, gardening and catching up with friends and family.

A month ago they took their first big trip since Patricia’s diagnosis, a cruise to the Virgin Islands, Puerto Rico and the Caribbean Islands. They traveled to Chicago in July to visit family, and because Patricia loves the beach, they’re making their way down to Fort Myers, Fla. in August. Fond of The Big Easy, they’ll visit New Orleans in September and then New York City in November for something high on Patricia’s bucket list: the Macy’s Thanksgiving Day Parade.

When asked what advice she could impart to others facing mesothelioma, Patricia says, “The best advice, I can give to anyone is to trust God and have faith that God will see you through any situation. Also, don’t be afraid to accept help from others, they are blessed by helping you. Be open, you can change the lives of others through your experience. And don’t forget to live life and help someone in the process.”

Her smile is so bright, her eyes so filled with light. Everyone loves to be around her. The presence of someone surviving cancer with such faith and optimism serves as an opportunity for others to awaken to something we often forget. It is so easy to become blinded by our fears and regrets that we forget to recognize the present moment, the sheer gift of life.

Patricia, with a tenderness of heart only known by those who have loved so fully, gently reminds us, “Take it one day at a time, moment by moment. We are not in this alone.”

When it Comes to Cancer, Financial Stress Can Be the Last Straw

The physical and emotional impact of a mesothelioma diagnosis is staggering, and things can really intensify when there are also concerns about finances.

Since no two situations are the same, the financial impact on families dealing with mesothelioma will vary. However, it is often the case that the couple affected are of working age, and prior to diagnosis were both holding down full-time jobs.

In this instance, when it becomes impossible for the husband or wife to continue to work due to their illness and the partner has to stop working in order to care for them, it does not take long for the financial strain to appear.

Often, the couple have quite a bit of debt. They may be paying off a house loan, a car loan or both, and while this was not a concern when wages were coming in, it is an entirely different matter when neither of them is able to work.

Even if there is no debt, a substantial amount of money is needed to cover the general cost of living, including groceries, property taxes and utilities. If there are children involved, there are also school fees, uniforms and books to be considered.

Add to this the cost of medical services and treatments, which may not be fully covered by health insurance, and the whole situation can become completely overwhelming.

If some are fortunate enough to have savings set aside, this can help for a while, but savings quickly disappear and there is no way to replace them.

The High Cost of Cancer

Consider the following stats:

  • Based on rates from 2008-2010, 40.76 percent of babies born today will be diagnosed with cancer at some time during their lifetime.
  • U.S. medical expenditures for cancer in 2020 are projected to reach $158 billion, an increase of 27 percent over 2010.
  • Medical bills were involved in more than 62 percent of U.S. personal bankruptcies in 2007, an increase of nearly 50 percent from 2001, a team at Harvard Law School, Harvard Medical School and Ohio University reported recently.
  • The Harvard team also found that most people who file bankruptcy over medical debt are well educated and middle class; three-quarters have health insurance.

Financial stress can be the straw that breaks the camel’s back, when it comes to caring for a loved one with cancer. Often, the caregiver, in an attempt to minimize stress for their loved one, takes on all of the financial worry and becomes so overloaded with stress that they wind up chronically ill themselves.

My Personal Experience

Brian was 52 years old when he was diagnosed with pleural mesothelioma, and I was 49. We were living in Exmouth, in the far north of Western Australia, and were both working full time.

I was successfully running my own retail business, selling clothing, shoes and artifacts that I imported directly from Bali, and Brian was working at the local prawn factory.

Prior to his diagnosis, we had both intended to continue working full time until we reached retirement age.

Things had been going really well for us. My business was thriving and, with Brian’s regular wage coming in as well, we decided to purchase a new home.

Shortly after we signed the papers, we traveled to Bali and spent a substantial amount of money on new stock for my shop. The tourist season was approaching, and we were anticipating a very profitable few months.

Unfortunately, this was not to be.

Shortly after our return to Exmouth in November of 1999, Cyclone Vance hit the town, with recorded winds of 267 kmh (166 mph), the highest-ever wind gust measured on the Australian mainland. Exmouth was left looking like a war zone, with its residents wandering around shell-shocked.

It was a dreadful time, and up until Brian’s diagnosis, it was the worst thing that had ever happened to me.

Needless to say, our hopes of there being a few excellent months of tourist trade were dashed. The town of Exmouth was so damaged that it was declared a national disaster area, and entry to the town was closed until the damage could be repaired and residents and business owners could get back onto their feet.

During this time, the residents of Exmouth were only spending money on bare essentials, and for a good many weeks business for me was absolutely nil.

Regardless of this, there was still the high rent to be paid on my business premises, and this had to come out of Brian’s wages, along with all of our other living expenses.

One Tragedy After Another

1999 was to be the cruelest year of our lives. Just over one month after Cyclone Vance hit, Brian was diagnosed with mesothelioma and given three to nine months to live.

This changed everything for me, and I decided to sell my business so that I could spend every precious moment with Brian. Unfortunately, at that time, when it came to selling a business, there was no longer the option of including a monetary figure for “good will” (payment for the building up of a loyal customer base).

All I could do was hand over my business name to the buyer, along with all of my shop fittings and stock, at cost price.

Selling my stock at cost price represented a huge loss of potential earnings for me; added to this, it was hard to accept that all of the hard work Brian and I had put into sourcing and buying the stock in Bali had been for nothing. There was also the cost of travel and accommodation that we had paid for.

Far from being a holiday, our buying trip left both of us drained. Brian had seemed to be exceptionally tired, and knowing what I do now, I believe he already had mesothelioma.

Selling my shop was heartbreaking for me. I had built it up from scratch and was very proud of what I had achieved. It was also very sad for us to put our new home up for sale. We had been so happy to find such a beautiful home in Exmouth and had thought that all of our dreams were coming true.

Due to the urgency of our situation, we could not be choosy when it came to an offer on our house. We needed to sell quickly, so that we could buy a home in Perth, and we ended up losing out financially on this as well.

Once in Perth, Brian’s chemotherapy treatment began and there were several stays in the hospital over the following months. Not having private insurance, we initially had concerns about how we would pay for all of this, but fortunately (Australia’s) Medicare covered most of the medical bills and all of the chemotherapy treatments. Medications also became very cheap after we reached the safety net.

Since neither Brian nor I was able to work, we both received benefits from Centrelink, and though this didn’t allow for any extras, we did manage to get by.

Owning our own home helped to make this possible. If we had had to pay rent, as well as all of our other expenses, I don’t know how we would have survived.

Alleviating Financial Stress

The first thing to do when a loved one has been diagnosed with mesothelioma is to talk to a qualified mesothelioma lawyer to find out if you can get any compensation from the company who was responsible for the asbestos exposure.

There is none better than Asbestos.com to advise you and support you during this process. Asbestos.com can help you select a qualified law firm for your needs.

Secondly, don’t be afraid to ask for help. Reach out to others. You never know who may be able to help you unless you ask.

Here is a list of other things that may be helpful:

  1. Contact any company to which you owe a debt, explain your situation and ask them if they can help you in any way. If it is a relatively small debt, you may find that some business will waive it. With larger debts, the companies may be agreeable to holding off payments that are due until such time as you are able to meet them, or at the very least, they may agree to reduce the monthly payment and extend the payment period over a longer period of time.
  2. Talk to your doctor about your financial concerns. They may be agreeable to reducing your fees.
  3. Use the Internet to find out which organizations are available to help people in your situation. Not-for-profit organizations have volunteers who will do all manner of things to help people, and there is no charge for their services.
  4. You can also use the Internet to look into how you may be able to manage and control your health care costs. Visit websites where there are online forums and an opportunity to communicate with people who are going through the same thing as you are. Ask questions, and you will be surprised at the amount of helpful information that fellow site visitors provide. The more you network, the greater the chance of finding some solutions for your problems.

So in short, reach out to others, from mesothelioma attorneys to the other resources mentioned above. You’ll never know if help is available until you ask.

You can leave Lorraine a comment below or on Facebook.