Last week I posted news that the federal Bureau of Land Management, under the direction of the Environmental Protection Agency, closed a 48-acre recreational area in California known as Clear Creek due to concerns about high levels of asbestos in the area. The land is a popular area for off-road hiking, biking and ATV adventures, with about 35,000 visitors a year. But now it seems that asbestos is a growing concern throughout a wide swath of California, where naturally occuring asbestos is prevalent. The Los Angeles Times reported May 2 about a community in El Dorado Hills, Calif., that is being investigated by the EPA for high asbestos levels.

Inspectors donned air filters and protective gear while running, biking and playing baseball and other sports in areas of the town to monitor asbestos levels. The paper reported that initial EPA assessments were worst along a creek-side trail in El Dorado Hills Community Park, where asbestos levels were 22-43 times higher than ambient air levels when stirred up by the common recreational activities tested.

It shouldn’t come as a complete surprise to the town. Already, the newspaper reported, asbestos concerns were responsible for a $2.5-million cleanup at Oak Ridge High School, including replacing the running track with a new all-weather surface.

Still, there is active ground clearing and new home construction throughout the town, with an affluent population and fine homes priced in the $700,000 range.

While some residents expressed concern, I was struck by the comments of residents who seemed to want to ignore the threat, or who refused to believe there would be a problem as a result of the asbestos. The Times quoted residents who “shrugged off” the news, saying “the whole thing seems like overkill.” Others objected to “the government” “overreacting,” saying “there’s risk in life whatever you do.”

One resident, who is worried about the effects on her children, recalling how her daughter brushed up clouds of asbestos-laden dust after a cheerleading routine, said, “Most people around here seem more worred about home values than health.”

The same types of risk dismissals are found in the Clear Creek story, where outdoor enthusiasts are vowing to fight the recreational area’s closing, telling the government to stop meddling and let them take the risk.

I just don’t understand this attitude. Asbestos is proven to be a danger, causing asbestosis, mesothelioma and other lung and stomach cancers. If people were told they were building their homes on radioactive land, or bike riding through Chernobyl, they would be concerned. Why is this deadly threat so much less apparent to them? Most seem to have the attitude that they will “worry about it later.”

What about the children? With the often long latency period for asbestos damage, youngsters exposed to asbestos now are at risk of developing problems in the prime of life. Are parents really willing to risk the lives of their children in order to not be “inconvenienced” or to “make their own decisions” independent of government recommendations?

If the EPA were to turn away from this danger, to issue a warning but not aggressively pursue closures and clean-up, what would the public say years from now, when people are affected with asbestosis and mesothelioma? “Where was our warning?” “Where was the government, to tell us there was danger?”

You can’t have it both ways.

I received an email a few days ago from Nancy Wagner, in Jacksonville, Florida. She found our site through the Lung Cancer Alliance message and journal sites, over at Inspire.com. She wanted some mesothelioma awareness materials, like our awareness bracelets, to share with people around her, in memory of her father, Bill, who passed away with mesothelioma in 2004. Nancy was kind enough to share her Dad’s story with us:

My Dad, Bill [Hackett], was a master mechanic and boilermaker from the time he was 25 until he retired on disability at age 61. During this time he dismantled and rebuilt or built boilers to run some of the company’s largest factories and businesses. He started out at Maryland Ship Building and Dry Dock and then went on to become an independent contractor.

Over the years he was exposed to asbestos hundreds of times, not knowing back then that it would be what eventually claimed his life.

From the time he was retired due to this disability until his death in 2004, he suffered tremendously with breathing disorders from mesothelioma. He faced several surgeries and had to have fluid removed from his body numerous times. There were days he could hardly breathe at all, but he kept going. How I will never know.

Because he had been self employed, there was no insurance because he could not afford it. And social security did not pay very much on a monthly basis. Being a decorated WW II veteran, he was entitled to some treatment through the Veterans Administration.

My father was a very independent man and refused to give up or give in to anything that stopped him from doing what he wanted and going where he wanted. And he refused to be a burden on any one, especially his daughters. Until the week he died he continued to serve as Chaplain of the American Legion Post and made arrangements for former veterans’ funerals and assisted their families.

But he never told us about the cancer. He went to all of his chemo appointments and never told us anything. It wasn’t until after his death and the Death Certificate was issued did we know this is what took him. He died alone, 2 weeks before Christmas, in the house where we grew up.

My dad was truly a great man. I believe the reason he never told any of us was because we lost our Mom to cancer when she was 34 and he was 36 and he didn’t want us to have to face losing him to cancer, even though it was a different kind.

Almost 2 years after his death, I found out that I have stage IV lung cancer.

Cancer in any form is life threatening. The more people are aware of the signs and symptoms of cancer, the better off they will be. Annual checkups are vital. Don’t wait until it’s too late. Cancer caught early can be cured. The later the stage, the more intense the treatments and the less chance for remission.

I’d just like to thank Nancy for sharing her Dad’s personal story with us, and for helping to raise awareness and urge for early detection and research. God bless you.

Approximately 31,000 acres of public land in California’s Clear Creek Management Area (CCMA) have been closed to all forms of entry and public use by the U.S. Department of the Interior Bureau of Land Management, based on the results of an Environmental Protection Agency CCMA Asbestos Exposure and Human Health Risk Assessment. The closure order was issued by the Bureau on May 1.

The closure order states, “This closure is necessary to protect public land users from human health risks associated with exposure to airborne asbestos in the CCMA based upon a final report issued by the Environmental Protection Agency that concludes that public use activities could expose an individual to excess lifetime cancer risks. The order will remain in effect while the BLM completes a Resource Management Plan for the CCMA to determine if and how visitor use can occur without associated health risks.”

The risk in this area comes from natural deposits of asbestos. Asbestos is linked to mesothelioma, a deadly lung cancer.

The San Francisco Chronicle, on the SFGate.com web site, quotes Jere Johnson, a project manager with the EPA, as saying, “Frankly, we were surprised at how high the levels of asbestos are at Clear Creek. What we found is that there is a lot of asbestos in the soil, and when you disturb the soil it poses a health risk.”

Chronicle reporter Carolyn Jones says outdoor enthusiasts are not happy about the area’s closing, and are skeptical of the danger. She quotes Don Amador, Western representative for the Blue Ribbon Coalition, an outdoor advocacy group, as saying, “It’s unprecedented, as far as public land issues go. We’re going to want to fight it, either administratively or in court.”

The article says the area will most likely be off-limits for at least a few years, while the Bureau of Land Management completes its own study.

There will be a public meeting tonight at the Santa Clara Convention Center, 5001 Great America Parkway, from 6-9 p.m. There also will be an open house from 3-5 p.m. Additional meetings will be held from 6-8 p.m. May 19 at Veterans’ Memorial Hall, 649 San Benito Street in Hollister; and 6-8 p.m. May 21 at the Martin Luther King Jr. Library, Room 225, 150 E. San Fernando Street, San Jose.

If you live in the area, please let me know if you attend any of these meetings. We will follow this issue and let you know if there are new developments.

In March, I posted that for the first time the Department of Defense (DoD) had appropriated funding for mesothelioma research as a priority within the department’s Medical Research Program, thanks in most part to the lobbying efforts of the Mesothelioma Applied Research Foundation (MARF, Meso Foundation). Today, TheHill.com reports that MARF, with the backing of more than a dozen senators, is pushing for continuing and increasing funds for mesothelioma research in the 2009 defense appropriations bill.

In the 2008 defense appropriations bill, Congress designated $50 million for the mesothelioma research as part of the Pentagon’s peer-reviewed program.

TheHill.com points out that supporters of the initiative for continued funding in the 2009 bill argue that “at least one third of the people suffering from mesothelioma … have either been in the Navy or worked in Navy shipyards across the country” where they were exposed to asbestos. Much of the exposure in the Navy cases, the report states, happened between World War II and the Vietnam War, when asbestos was used in shipyards and ships. For that reason, supporters push for federal funding for research.

TheHill.com writer Roxana Tiron reports that last month several senators sent a letter to the chairman and ranking member of the Senate Appropriations Defense panel in support of the continued funding. The letter stated, in part, “Funding through the Department of Defense appropriations bill is an important demonstration of our nation’s commitment to addressing the tragedy of mesothelioma and its disproportionate impact on those who serve our country.”

Among the bill’s supporters are Sens. Max Baucus (D-Mont.) and Patty Murray (D-Wash.), who have been leading the charge to ban asbestos and secure more funding for mesothelioma research. The Ban Asbestos bill, introduced by Murray and passed in the Senate last October, includes $10 million per year in funding for cancer research. The companion bill in the House has not yet been passed.

Also among the supporters for the 2009 appropriations funding for meso are Sens. Patrick Leahy (D-Vt.), Dick Durbin (D-Ill.), Barbara Boxer (D-Calif.) and John Ensign (R-Nev.).

The Meso Foundation funds approximately $1 million a year for research worldwide. The organization will hold its annual three-day symposium in Washington, D.C., starting on June 26, expecting more than 100 grassroots supporters to meet with their congressional representatives. For more information about this event, visit MARF online.

Today I received a wonderful email from Charlene Kaforey. Some of you have followed along with her story about her own fight with mesothelioma, which was published here in March and April. For those that are unfamiliar, Charlene, who just turned 49, was diagnosed with mesothelioma in June 2007.

With a stage III diagnosis, she underwent chemotherapy treatments from October to December of that year, and then, faced with the prospect of a pleurectomy or pneumonectomy, which would remove part or all of the affected lung, decided to try alternative medicine.

Charlene went to the ITL Alternative Cancer Treatment Clinic in Freeport, Grand Bahamas, in January 2008, where she underwent an 8-week treatment called Immuno-Augmentation Therapy (IAT). Upon returning home, she administers her own vaccines several times a day, and has been continuing a twice-daily intravenous vitamin C program with the help of a nurse friend.

She celebrated her birthday Sunday, then on Monday went for her first CT scan since beginning her alternative treatment. Charlene reports, “There was overall improvement in my scan results!! The tumor was half of what it was previously, the pleural thickening was reduced, fluid is reduced and the pleural effusion is gone. I am thrilled, and stunned. Of course, I’m still guardedly optimistic, since I do still have cancer and the results could change at any time. But this, for now, this is the best birthday present I could have gotten!”

Alternative therapies like IAT are not authorized by the American Medical Association, and there is still a lot of skepticism and caution surrounding them. Generally, medical insurance does not cover alternative medical treatments like IAT.

Treatments that are not considered conventional medicine, but that are undertaken along with traditional medical therapies, like chemotherapy, radiation and surgery, are called complementary. Treatments used in place of conventional medicine, like the IAT Charlene is undergoing, are called alternative medicine.

IAT, along with other complementary and alternative medicine (CAM) programs, are being studied by the U.S. Department of Health and Human Services, the Food and Drug Administration (FDA) and the National Center for Complementary and Alternative Medicine (NCCAM), which operates under the Department of Health and Human Services.

Patients considering complementary or alternative treatments are encouraged to thoroughly research possible risks, benefits, and scientific evidence, and to discuss alternatives with their physician.

For more information, visit the NCCAM online, in the “health” section under “be an informed consumer.” They have information on topics including what to do when considering using CAM, how to select a CAM practitioner, and paying for CAM treatment.

I will be exploring CAMs in the coming weeks, and hope to talk to physicians and alternative and complementary treatment doctors and specialists about these programs, as well as patients like Charlene who are using them. If you’ve had an experience with a CAM, leave a comment or email me and share your experience.

I am thrilled for Charlene! Happy Birthday!!

Those of us who work to raise awareness about mesothelioma, or who are facing the diagnosis for ourselves or with a loved one, tend to talk about it a lot. We corner people at gatherings and start warning them about the dangers of asbestos, or sharing the latest information about treatments and research. We barely need an opening to start talking about mesothelioma.

But now it’s even easier. MyMeso.org has several items we’d love to share with you that will help open doors to conversation - bracelets, pens and water bottles, all emblazoned with the words “mesothelioma” and “awareness.” We’d be happy to send you some of these to help you talk to other people about the dangers of asbestos exposure and the challenges facing those battling mesothelioma.

You can pretty much always count on seeing me with a bright blue mesothelioma awareness bracelet now. If you don’t see it, it’s probably because I’ve given it away when someone asked me about it, so they will remember to look for information after we’ve parted. I leave meso awareness pens in restaurants, hoping a curious diner after me will steal one and search to find out what it’s all about. I strike up conversations in the gym or at the park when someone sees my water bottle and asks, “what is that about?” It makes it really easy to spread the word!

Now you can help us raise awareness! You can have any of these items for FREE! Just send me an email and let me know what you need and where to send it. We will not share your information or use it for solicitation. We just want to help you help us share the news about this public health issue.

The more people we can educate about mesothelioma and asbestos danger, the closer we will come to securing funding for prevention, research and solutions.

Amy Peterson of the Lung Cancer Alliance posted to the LCA message board / support group on Inspire.com yesterday to let cancer survivors know about a new program that aims to provide hope and cheer during a difficult time. The LCA is partnering with Compassionate Communications, a company dedicated to connecting people in need of support and encouragement with people who want to reach out to them.

Compassionate Communications will operate a web site, which will be launched sometime this month, that will feature photos and information about people struggling with cancer, including mesothelioma, and other life-threatening illnesses. Visitors to the site can view profiles, and if they choose to register (for a fee of $25), they will receive five Hallmark greeting cards with pre-paid postage, to send to patients to encourage them, and other support materials. Twenty-five percent of the registration fee will benefit patient-serving organizations.

There is no charge for a patient to register his or her profile. The program operates in cooperation with Hallmark Business Expressions (a subsidiary of Hallmark Cards, Inc.).

Patients may download an “opt-in” registration form and waiver directly from the web site, or call 888-337-6416. The waiver must be completed and returned by mail or fax to Compassionate Communications, which will then provide participants with an account so they can set up their personal profile on the site. There is a place on the waiver form for patients to designate the patient-assistance organization they would like card-sender registration fees to benefit.

You may also get more information or ask questions by emailing Amy at the Lung Cancer Alliance at apearson@lungcanceralliance.org.

Ok, it’s out there. I said it. Death. It’s not a subject that I go into with most of the people I talk to about mesothelioma. Even if we acknowledge that mesothelioma is diagnosed as a terminal disease, most of my conversations are about treatment options, support groups, awareness, and, ultimately, hope.

A couple of days ago I wrote about the closest topic I’ve seen along these lines, which still involved ways to find a silver lining in the struggle. Obviously, it’s a very necessary part of such a diagnosis. But it’s still about hope.

But today I came across an interesting essay, penned by Monica Sanford, a graduate student at the University of Nebraska-Lincoln, that is forcing me to look at another reality of mesothelioma. Its title, “Inevitability of death leads to freer living,” was immediately arresting. The author jumped right in with, “I thought I should write about death.” She went on to share that she has recently lost three people very close to her in fairly rapid succession - a paternal grandmother, a maternal great-grandmother, and her dear friend, Marilyn. Marilyn died of peritoneal mesothelioma at age 47.

As she ponders the very different lives and deaths of these people she loved, Monica wonders at a common thread - all knew they were nearing death, two as a result of illness, the other just sensing her time was nearing an end, even sharing with her great-granddaughter just a month before her death that she had walked with God, who showed her a waiting heaven.

That’s a truly unique aspect of this diagnosis. The knowledge, the clarity, the preparation for death. Everyone knows they will one day die, of course, but that day is always a long way off. Illness of this kind brings it into sharp relief.

In the post I wrote a couple days ago about silver linings, most people said the one thing they could credit their disease for was giving them a sense of the value of their time on earth. That knowing their illness was diagnosed as terminal gave them often times a will to fight harder and stay longer, because they saw with new eyes all the things they really wanted before they would be ready to go.

There’s a saying, “live each day as if it was your last.” But in the everyday hustle and bustle, it’s so hard to keep that in mind.

Monica’s essay reflects on faith, traditional Christian faith like that of her great grandmother, as well as her own, different, Buddhist perspective, and observes the different ways that her family members mourn, or celebrate, or deny at a loved one’s passing.

In the end, she finds that, for her, “The one thing I have that helps me cope with death in my life is not faith or family or hope. It is acceptance. Death is. Just like life is. Neither is good nor bad - they just are.”

But still, it hurts to let go.

A while ago, I posted a series of stories from an interview with Rear Adm. Phil Coady (ret.) the Chairman of the Board of the Lung Cancer Alliance. In the interview, he talked about pulmonary fibrosis. Since that time, I’ve had several people wondering if pulmonary fibrosis is connected to asbestos or mesothelioma.

The American Lung Association explains that pulmonary fibrosis is also called interstitial pulmonary fibrosis or interstitial lung disease (ILD). These three terms are often used to describe the same condition.

ILD is not lung cancer; it is a chronic lung disorder. ILD involves a thickening of the lung tissue, which becomes stiff and makes breathing more difficult and demanding. ILD can take many forms, and may progress slowly or rapidly, depending on the individual and the nature of the ILD.

The Lung Association reports that the common link in ILD is that it begins with inflammation, which may affect different parts of the lung. Inflammation may lead to permanent scarring of the lung tissue, which is often called pulmonary fibrosis. The interstitum is the tissue between the lung’s air sacs. Scarring begins in this area, which lends the condition its formal name.

Known causes of pulmonary fibrosis include occupational and environmental exposures, including exposure to asbestos, which can damage the lungs and cause scarring (fibrosis).

Other possible causes include a disease called Sarcoidosis, side effects of medication, radiation, connective tissue or collagen diseases, or genetic predisposition, which is not as common. The familial form of the disease is often called familial idiopathic (of unknown origin) pulmonary fibrosis.

When I spoke with Admiral Coady, he mentioned that he did have a family history of pulmonary fibrosis. He knew that his family history, combined with his exposure to asbestos while serving in the Navy, put him at greater risk for the disease, and was vigilant about early screening. He did eventually develop the condition. Sadly, he also later developed lung cancer, although not mesothelioma.

Some ILD improves with medication if treated when inflammation occurs, and some people also need oxygen therapy as part of their treatment.

I hope this answers the questions and clears up any confusion. While pulmonary fibrosis is not related to mesothelioma, it could be considered an asbestos-related disease.

Asbestos concerns have forced the relocation of nearly 150 elementary school-age children from North Kossuth Community School in Bancroft, Iowa. An Associated Press report released on MSNBC today says asbestos levels in one classroom were 10 times greater than what is considered safe, and 1,000 times greater in a second-floor hallway at the school. Asbestos has been linked to mesothelioma cancer and other diseases including asbestosis, a severe scarring of the lungs.

The school was closed Monday after testing revealed the high asbestos levels present in the facility. Students will be relocated to a facility in the nearby community of Swea City, with plans to complete this resume classes Thursday. Students have three weeks remaining in the school year.

According to a story on MidIowaNews.com, the district has been concerned about the school since at least May 4, 2007, when Paul Baer of The Institute for Environmental Assessment sent a memo stating that accoustical ceiling spray on the ceiling of the second floor hallway and classrooms contained asbestos. The news story goes on to say that the memo stated that due to roof leaks beginning in 2002, asbestos was beginning to separate from the plaster and would release asbestos fibers into the air if it fell.

On March 18, 2008, the Fairmont Sentinel, a daily paper that serves southern Minnesota and northern Iowa, reported that concerns were raised at the March 17 school board meeting. North Kossuth Superintendent Mike Landstrum told the Sentinel that an IEA inspector “told me there were some major concerns with health issues.”

Following the meeting, two public hearings were set to address the issue, one on April 7 at Swea City, and one April 14 in Bancroft.

The Sentinel reported that at the Swea City meeting April 7, in a letter to the district, George Rosburg of the IEA stated the water damage, visible leaks and sagging asbestos ceiling spray were “… a serious health & safety concern, and recommends North Kossuth Community Schools consider the asbestos removal and roof repair as a very high priority.”

Until this decision to relocate students, North Kossuth Elementary has been located in space rented from St. John’s Catholic School, a private school located on the same campus. North Kossuth has rented the property since 2002. Because the district leases the building, St. John’s is responsible for maintenance, which would include asbestos removal and other repairs.

North Kossuth’s lease agreement with St. John’s does not expire until 2012.

The Environmental Protection Agency (EPA) requires all public school districts and private schools, known as local education agencies or LEAs, to inspect all school buildings for both friable and nonfriable asbestos; to develop plans to manage asbestos in schools; and to carry out the plans in a timely fashion.