The Mercury News, which covers Silicon Valley in California, ran a story recently that gave me goosebumps. It profiles Tom Kaisersatt, who recently completed the Silicon Valley Marathon, although he is in the midst of preliminary treatments for mesothelioma. He completed a fourth round of chemotherapy after the race.

According to the story, Kaisersatt, 68, is a regular marathoner who also coaches first-timers to the sport. He was diagnosed with mesothelioma in June, and is now talking with doctors about the possibility of undergoing an extra-pleural pneumonectomy, removing his right lung.

The News reports Kaisersatt received special permission from race director J.T. Service to run the marathon in stages, completing parts of the distance over five weeks prior to the event, and the final five miles of the race on the day of the marathon. The course was lined with well-wishers wearing bright yellow shirts emblazoned with the words “Team Tom” and bright balloons, who cheered Mr. Kaisersatt to the finish line.

The prospect of losing a lung has to be difficult for a man who loves to run, but Kaisersatt proved he is keeping a positive outlook, quoted by the News as saying, “A lot of people get along with just one lung, although that will probably increase my marathon time next year.”

What an amazing spirt, and an amazing man. Blessings to you as you face this challenge, and we’ll see you at the finish line next year!

There’s an interesting story in the news today about a young woman in California who has painted the exterior of her home a bright seafoam green as a way to boost her spirits as she struggles with abdominal mesothelioma. The story is published in Today’s Local News, a community newspaper distributed free of charge to 75,000 homes in the five cities along the Highway 78 corridor - Carlsbad, Escondido, Oceanside, San Marcos and Vista, Calif.

According to the story, Rebekah Price was diagnosed with advanced mesothelioma in her abdomen a little more than two years ago. She underwent surgery and now flies to the National Institutes for Health Clinical Center in Bethesda, Maryland, every four months for treatment. There is no cure for her mesothelioma, and Price knows that within five years after surgery the cancer can reappear.

When she purchased her house in Carlsbad, Calif., she first brightened the inside, painting the rooms in a variety of bold colors - gold, orange, purple, green, blue and pink. The colors cheer her up, the story reports, quoting Price as saying, “Life’s been pretty dark for a long time. I want color, you know?”

Unfortunately, the choice to paint the exterior of her home has raised the ire of some neighbors, who have harassed Price and her two daughters, the News reports. Twice, groups of teens have approached the house with the intent to vandalize it, and many times people have driven by yelling insults at her. They commonly tell her to “…go back to…Tijuana!”, a racially motivated reference to the bright colors sometimes favored in Hispanic decor.

Although the harrassment has been scary and discouraging, Price decided to take a lighthearted approach and recently threw a Mexian-themed party in her yard, complete with a mariachi band, traditional taqueria (taco stand) and low-rider autos donated to the event by a local auto club in which some of her friends are members.

Not all neighbors have reacted negatively, with many saying Price ought to do what she wants to find happiness and peace during this difficult struggle with mesothelioma.

Perhaps some of those harassing Price don’t know about her special circumstances.

But even if she wasn’t facing a terminal diagnosis, it makes you wonder about the lack of tolerance in the world today. What is so scary about diversity that some people feel the need to react with hostility and violence? How boring the world would be if everyone was the same.

Good for you, Rebekah! Find your joy! You serve as an inspiration to all of us to embrace the beauty and fun in this world, to take the time to stop and look around and really see what we have, and what we want, before it’s too late.

I hope everyone had the chance to watch John Atkinson play the U.S. Open golf course at Torrey Pines, California, as part of a celebrity foursome with NBC Today Show anchor Matt Lauer, Dallas Cowboy player Tony Romo and entertainer Justin Timberlake. The event was broadcast on NBC Sports on Sunday, Father’s Day.

I’ve posted about John several times on this site. He was selected by the readers of Golf Digest magazine to participate in this first-ever celebrity foursome event. Diagnosed with Stage IV lung cancer, John used the event as a chance to raise awareness about lung cancer and to inspire those with the diagnosis to keep meeting the challenges of everyday life, and taking advantage of life’s unique opportunities.

This morning, Matt Lauer interviewed John and his brother, Kevin, who caddied for his big brother on the last hole in an emotional show of support. Watch the video at MSNBC.com.

In addition to this video, the Lung Cancer Alliance has the first part of what will be a multi-part documentary about John’s battle against Lung Cancer up on its site. John is a spokesperson for the organization. Watch the first episode at the LCA web site.

John has made it his mission to raise awareness about lung cancer, with the hopes of increasing funding for research and treatment. His campaign gives hope to everyone who battles lung cancer in its many forms, including those fighting mesothelioma, which affects the lining of the lungs. Thank you, John, for your willingness to go that extra mile!

Just a quick update on John Atkinson. I’ve posted many times this week about the lung cancer survivor, who will play in a celebrity foursome on the U.S. Open Torrey Pines course in California with entertainer Justin Timberlake, NBC Today Show anchor Matt Lauer, and Dallas Cowboys star Tony Romo. John’s round of golf will be televised on NBC Sports at 2 p.m. EDT on Sunday, June 15. But I need to clarify that John is actually playing his round TODAY, Friday, June 6.

He arrived in California yesterday for a practice round, and will tee off with the celebrities in front of 250 spectators, along with camera crews and journalists, tomorrow. His final round and his score will be televised on June 15 as part of the lead-in to the U.S. Open coverage. The special will feature clips from the 18 holes of golf. John vows to break 100 on the tough course, with a goal of shooting an 89.

You can still sign up to sponsor John as part of his U.S. Open adventure, with funds going to lung cancer research and awareness. He is encouraging people to agree to double their pledge if he makes his goal of breaking 100. Find a sponsor form at the Lung Cancer Alliance web site. GO JOHN!

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.

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.

Public Justice recently filed suit in federal and California state courts against CBS Broadcasting, Inc., Planet Toys, Inc., and several retail manufacturers in response to their production and marketing of CSI toy kits containing asbestos. Asbestos has been linked to mesothelioma, a deadly lung cancer, as well as other cancers, asbestosis and pulmonary fibrosis.

CBS licenses the toy, which is based on its popular CSI: Crime Scene Investigation ™ television program. Planet Toys is the manufacturer.

According to a Public Justice press release, the federal complaint, filed in U.S. District Court in Los Angeles, alleges that CBS and Planet Toys were negligent in their quality control measures and that they promoted the CSI toys although they contained a hazardous and potentially lethal carcinogen.

In November 2007, the Asbestos Disease Awareness Organization (ADAO) released results of a study of a number of products, including the CSI: Crime Scene Investigation ™ Fingerprint Examination Kit. It was found that the CSI toy’s fingerprinting powder contained asbestos. The fingerprinting powder containing asbestos also can be found in related CSI toy kits, the CSI: Crime Scene Investigation ™ Field Kit and the CSI: Crime Scene Investigation ™ Forensic Lab Kit.

The story was covered in the news media, including CNN, in December 2007. On Feb. 21 CNN did a follow-up report and noted that the Planet Toys had not yet issued a recall.

Public Justice reports that in a meeting including representatives from ADAO, CBS and Planet toys in December 2007, CBS and Planet Toys agreed to remove some of the toys from store shelves, and to work with Public Justice to further test the toys. However, Public Justice reports that months later, there has been no joint testing, Planet Toys continues to deny the products contain asbestos, and there has been no recall.

The Public Justice press release quotes Linda Reinstein, executive director of ADAO, who says, “Our pleas for the companies to do the right thing have fallen on deaf ears. It is unacceptable and unnecessary to have asbestos in toys, and especially in powder form, its most dangerous state. Most Americans falsely believe asbestos has been banned, but our recent product testing results prove asbestos remains a threat to public health.”

The federal complaint is a class action suit that asks the defendants to “provide refunds to consumers, pay for asbestos testing of toys that have been opened, and pay for appropriate medical treatment for consumers who have been exposed to asbestos,” according to the release. The state lawsuit “seeks civil penalties for violations of the law, in addition to injunctive relief.

Read the full text of the Public Justice press release here. This site also contains links to the federal and California state complaints.

Public Justice is a membership-supported law firm with more than 3,500 members, comprised of trial lawyers, other attorneys, and public interest advocates worldwide.

ADAO is a nonprofit organization dedicated to the mission of “asbestos awareness, education, advocacy, prevention, support and a cure.”

Over the weekend I traveled to Detroit, Michigan, to attend the fourth annual Asbestos Awareness Day Conference, presented by the Asbestos Disease Awareness Organization. The conference included a full day of educational and informative presentations on Saturday, as well as a remembrance service on Sunday.

Following is a story that appeared in the Detroit Free Press about the remembrance service, and the mission of asbestos awareness. I will post some stories and images from the conference this week, but I wanted to share this excellent report.

By Amber Hunt, Free Press Staff Writer

For Andrew Manuel, it began with back pain.

But the seemingly benign symptom turned out to be something far more sinister, and within two years, the married father of three shed 65 pounds, underwent surgery to have a lung removed and endured chemotherapy and radiation to no avail.

At 42, he was dead. The killer: mesothelioma, a cancer linked to asbestos.

“When I heard the diagnosis, I said, ‘Meso-what?’ ” said Manuel’s wife, Latanyta Manuel, 45, on Sunday. “All I heard was ‘lung cancer,’ and I said, ‘No, that’s not possible.’ My husband never smoked or drank, but they said this cancer is about asbestos.”

On Sunday, a group of people affected by the deadly disease, which they refer to as “meso” for simplicity’s sake, gathered at the Marriott in downtown Detroit’s Renaissance Center for a remembrance brunch.

The event was sponsored by California-based Asbestos Disease Awareness Organization and the Karmanos Cancer Institute in Michigan.

Some, such as Manuel, had lost loved ones. Others have been diagnosed with the deadly disease themselves.

They gather annually, they said, to support each other and to spread the word about asbestos-related diseases, including lung cancer and asbestosis.

Asbestos is a fiber that for decades was routinely used for fireproofing and insulation.

While the U.S. government has limited its use, asbestos still can be found in many products, including some stuccos, vinyl flooring and even theater curtains, according to the Asbestos Resource Center.

“Asbestos is still being imported. It’s still being put in products,” said Michelle Zigielbaum, whose husband, Paul, has been diagnosed with peritoneal mesothelioma.

By the time he was diagnosed, his stomach was so full of fluid and tumors that “I looked like a pregnant woman,” Paul Zigielbaum said.

The Asbestos Disease Awareness Organization recently conducted a study that tested 250 products off store shelves for asbestos content. A first lab found that 18 of the products contained asbestos.

A second lab confirmed that eight of the products had asbestos, while a third confirmed that five products — including a child’s toy — contained asbestos.

Those gathered Sunday said they and their loved ones got sick in different ways.

Andrew Manuel’s father worked in a pipeline, bringing asbestos back into the home. Paul Zigielbaum said he believes he was exposed secondhand, too, but said he also believes that contact with everyday products contributed.

All blamed aggressive asbestos lobbyists as the reason the United States hasn’t banned the substance altogether.

“It’s disturbing to see how companies and politicians try to cover it up,” said Dwayne Manuel, Andrew Manuel’s 26-year-old son. “This is a preventable disease.”

Latanyta Manuel said she just wants to honor her husband’s wishes and spread awareness about the disease.

“Once it erupts, it just kind of takes over,” she said. “People need to know.”

Contact AMBER HUNT at 586-826-7267 or alhunt@freepress.com.

The Mesothelioma Research Foundation of America is supporting clinical trials of Veglin, a relatively new anti-angiogenesis drug designed to halt blood vessel formation. Anti-angiogenesis drugs target the body’s natural production of Vascular Endothelial Growth Factors (VEGF), proteins that spark blood vessel growth into cancerous tumors and lead to malignancy. Mesothelioma is among the cancers being studied in the clinical trials.

Veglin is undergoing clinical trials at the University of Southern California’s Keck School of Medicine, and, in August 2007, MESORFA teamed up with doctors at the Yale Cancer Medical Center in an endeavor to meet the needs of the mesothelioma patients on the East Coast.

Veglin inhibits VEGF proteins, halting the formation of blood vessels and limiting the ability of tumors to grow and spread. Veglin is an antisense oligonucleotide, meaning that it can bond to messenger RNA (nucleic acid that directs protein production) and block the production of VEGF proteins.

Trials are targeting patients that have already undergone chemotherapy, and also newly diagnosed patients.

To determine if you qualify for Veglin, please contact Jennifer Paul, Executive Director, by calling 1-800-909-MESO (6376).

• Mesothelioma - General Information
• Symptoms
• Diagnosis
• NEW Developments in Diagnosis
• Risk Factors
• Other Asbestos Related Cancer

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