It’s not too early to begin making preparations for Mesothelioma Awareness Day, September 26. The Meso Foundation has a helpful toolkit on its web site, that will assist you in planning mesothelioma awareness events in your area. There are two main activities encouraged – a radio public service announcement (PSA) campaign, and a proclamation from your local government to declare Meso Awareness Day in your community.

Here at myMeso, we have had great support for both Mesothelioma Awareness Day and Asbestos Awareness Day (April 1) from the City of Montgomery in the past. This year, we are hoping to expand our efforts, and share this important message with even more folks throughout our community and across the state. I’ll keep you posted as our plans develop. If you’d like any help in your area, please let me know, and I’ll be glad to lend a hand, or certainly contact the good folks at the Meso Foundation.

In addition to Meso Awareness Day, there are a few other upcoming mesothelioma and asbestos awareness events – go ahead and mark your calendar!

• The Asbestos Disease Awareness Organization (ADAO) has announced its Sixth Annual International Asbestos Awareness Day (AAD) Conference will be held in Chicago, Ill., April 9-11, 2010. Registration starts January 1, 2010. The theme is “Science and Technology Proves Asbestos is a Carcinogen.” This great conference features tons of expert speakers, as well as a heartfelt Remembrance Brunch to honor those who lost their lives to asbestos disease. Visit the ADAO web site for more information, and make plans now to attend.
• The Mesothelioma Applied Research Foundation (Meso Foundation) announced the 2010 International Symposium on Malignant Mesothelioma will again be held in Washington, D.C., and the event will return to the Omni Shoreham Hotel, which was a wonderful host for the event this year. Dates are June 10-12, 2010.

I will provide more information about both of these events as details are announced, but it’s never too late to make your plans. These events provide a wonderful opportunity to learn more about the dangers of asbestos, and the progress being made in research and treatment of asbestos-related diseases like mesothelioma. They also are a wonderful way to network and make connections with other people who are fighting the battle to prevent and cure mesothelioma.

The Asbestos Disease Awareness Organization (ADAO) has announced its Fifth Annual International Asbestos Awareness Conference is set for March 28, 2009, in Manhattan Beach, Calif. The purpose of the event is to educate the public about the dangers of asbestos, ban its use and encourage research efforts to improve treatment options for asbestos diseases like mesothelioma.

The conference will feature prominent physicians, scientists, safety and health directors, as well as survivors, who will present current information about the status of asbestos in the U.S. and worldwide. Discussion will include facts on exposure, asbestos-related diseases and how to prevent them, and where to turn for help.

In addition to the main event on Saturday, there will be an evening reception on Friday, March 27, featuring musician Jordan Zevon, whose father, legendary singer-songwriter Warren Zevon, died of mesothelioma in 2003; and a Unity and Hope Remembrance Brunch on Sunday, March 29.

Five individuals will be honored for their outstanding work in raising awareness about asbestos exposure: U.S. Senator Barbara Boxer for her work to ban asbestos in the U.S.;  Margaret Seminario, AFL/CIO, for her efforts to unite, educate and empower asbestos victims and workers; Dr. Stephen Levin, MD, for his research into the social and medical impact of asbestos; and Pralhad Malvadkar and Raghunath Manwar for their work with victims of asbestos exposure in India and worldwide.

The conference is presented by ADAO, the Barbara Ann Karmanos Cancer Institute and the International Ban Asbestos Secretariat.

For more information or registration, visit ADAO online.

Sunday, Sept. 7, is the fifth anniversary of Warren Zevon’s death. The Grammy award-winning composer and musican, who penned such popular tunes as “Werewolves of London,” passed away in 2003 from mesothelioma, at age 56.

The following videos are from Zevon’s last appearance on the David Letterman show in October 2002, where he was the only guest for the program, a tribute to his life and work. During the interview with Letterman, Zevon quipped that facing death had taught him to “enjoy every sandwich,” a reminder to savor each moment of life.

These videos provide a wonderful portrait of this talented musician. He is greatly missed.

Warren Zevon’s son, Jordan, also a talented musician, is an active advocate for mesothelioma and asbestos disease awareness, and spokesperson for the Asbestos Disease Awareness Organization.

Sears, Roebuck and Co. will pay a civil penalty of $55,000 to the State of Massachusetts for a violation of its Clean Air Act and Consumer Portection Act following the improper removal of asbestos from a customer’s home. The story in the Wicked Local Pembroke reports Sears contractors improperly removed asbestos when replacing a boiler in October 2004.

The news agency reports that the complaint filed in Suffolk Superior Court notes that Sears assured its customer that it could remove an existing boiler, which contained asbestos insulation, and replace it with a new one, safely and cost-effectively. The complaint says Sears assured the customer the workers would be properly licensed and trained.

However, the workers who arrived to complete the work – a plumber and second subcontractor – were not licensed or trained to handle asbestos. The complaint notes that the workers removed the existing boiler wearing no protective gear, did not seal the area, and dropped the boiler, breaking it open and releasing asbestos into the air when the insulation crumbled. The workers cleaned up the spilled asbestos insulation material with their bare hands, and disposed of it in regular black trashbags, the Wicked Local reports.

Asbestos dust was released into the air in the customers’ basement and first-floor area, exposing them to carcinogens. Asbestos is linked to the development of asbestos related diseases including mesothelioma and asbestosis.

According to the Massachusetts Department of Environmental Protection (MassDEP), contractors need to determine whether asbestos is present pior to conducting any renovation or demolition activity. Companies doing work on a project that possibly contains asbestos are required to hire a Division of Occupational Safety (DOS) certified asbestos abatement contractor.

If asbestos is present, there are MassDEP requirements for anyone handling asbestos, including special supplies and equipment, specific work practices including setting up a containment area, air filtration equipment, packaging and labeling of waste. If the area is contaminated by improper handling of asbestos, MassDEP says, cleanup procedures specific to the job are required.

Contractors should check with their state office of Environmental Protection or Occupational Safety before beginning any project that may involve asbestos, as regulations may vary from state to state.

According to the Massachusetts complaint, Sears subcontractors never notified their Department of Environmental Protection or filed an Asbestos Notification Form when removing the boiler.

The Wicked Local reports part of the settlement will require Sears to develop and implement a customized asbestos training program for salespeople and managers, and to provide enhanced supervision on all jobs where asbestos may be present.

A young woman believed to be Britain’s youngest mesothelioma patient, at age 28, passed away last week, just two years after her diagnosis, according to a story in the Daily Mail. Leigh Carlisle, who grew up in Manchester, had peritoneal mesothelioma, affecting the lining of the abdomen.

Because of its long latency period – from 20 up to 50 years – mesothelioma usually occurs in older people, age 50 and older. For that reason, Carlisle’s mesothelioma eluded diagnosis early on, with doctors mistaking her symptoms for ailments such as irritable bowel syndrome (IBS), pelvic infection and endometriosis. Doctors were stunned when they diagnosed peritoneal mesothelioma.

Because of her young age, researchers believe Carlisle may have come in contact with asbestos – the only known cause of mesothelioma – in her school, or possibly from a factory yard near her childhood home, which she used as a shortcut on her way to school each day. Asbestos sheets were cut at the yard.

According to the report, about 2,000 people in Britain die from mesothelioma each year, a figure that has doubled since 1992. The paper reports that 90,000 people in the UK will die from the disease, and another 90,000 from other asbestos-related lung diseases.

Additionally, the report says about 200 school workers have died or are suffering from illnesses related to asbestos exposure in schools in Britain, where it is estimated that about 13,000 schools still contain asbestos.

Following her diagnosis, Carlisle worked for mesothelioma and asbestos awareness. Her family requests that donations in her memory be made to the Oldham Cancer Support Centre in Failsworth:

Oldham Cancer Support Centre
Failsworth Primary Care Centre
Ashton Road West
Failsworth
M35 0AD
Tel: 0161 906 2940

A Minnesota woman is “claiming cured” after battling mesothelioma. Diagnosed in November 2005, Heather Von St. James, now 39, underwent surgery under the care of Dr. David Sugarbaker, who heads the acclaimed International Mesothelioma Program at Brigham & Women’s Hospital in Boston. Now nearly two years later, all traces of her cancer are gone, according to a story today in the Minneapolis Star-Tribune.

Heather’s treatment included radical surgery to remove her left lung, the lining around her heart, half her diaphragm, her sixth rib, and a few lymph nodes, followed by a chemotherapy regimen every three weeks for 12 weeks.  She now calls herself the “poster child for hope after meso.”

According to the Star-Tribune article, Dr. Sugarbaker is more guarded, although optimistic. The paper quotes him as saying, “right now in this present moment she is disease-free.”

Dr. Sugarbaker is arguably the leading mesothelioma physician in the U.S., and is largely credited with developing the surgical technique for mesothelioma resection and for recognizing the importance of a multimodality approach to treatment that combines surgery with chemotherapy and radiation therapy.

The National Cancer Institute estimates about 2,000 cases of mesothelioma are diagnosed in the U.S. each year. The disease has a long latency period of between 20 and 50 years, and it is unusual to find it in someone so young. Mesothelioma is linked only to asbestos exposure, so its victims are traditionally people who work in asbestos mining or come into contact with asbestos through other occupational exposure.

In Heather’s case, her mesothelioma is most likely due to secondhand exposure, from asbestos on her father’s work clothes. The Star-Tribune reports that Heather’s dad, Rollie Rosedahl, was a construction laborer who often worked with asbestos-containing products. Heather says she often wore her father’s jacket and boots when he’d come in from work.

The National Cancer Institute says that asbestos related disease like mesothelioma and asbestosis can occur in people with only brief exposures, and that there is evidence that family members of workers exposed to asbestos face an increased risk of developing mesothelioma.

Earlier this summer I wrote about a blog on National Public Radio called My Cancer. Written by the former executive producer of ABC’s “Nightline” program, Leroy Sievers, the blog was accompanied by weekly podcast, and provided a frank and honest look at living with a cancer diagnosis. In 2001, Sievers was diagnosed with and successfully overcame colon cancer. Then, in 2005, cancer returned, affecting his brain and his lungs. Seivers passed away Friday, at age 53.

The My Cancer blog inspired thousands of cancer survivors from around the world and boasted upward of 30,000 comments. Sievers also appeared on ABC newsman Ted Koppel’s “Living with Cancer” television special, which was broadcast by The Discovery Channel in May 2007, as well as a special broadcast of NPR’s Talk of the Nation program that addressed the same “Living with Cancer” topic, which aired July 9, 2008, also hosted by Koppel and featuring cancer survivor Elizabeth Edwards.

“Leroy gave voice to a topic that we are very uncomfortable with — death and dying,” Ellen McDonnell, NPR’s morning programming director, said in a statement. “My Cancer had a face and a heart and a smile.”

Sievers is survived by his wife, Laurie Singer.

A memorial fund has been set up to honor Sievers memory and work. Donations can be made to the following address:

Leroy Sievers Memorial Fund
Johns Hopkins Kimmel Cancer Center
Patient and Family Services
100 N. Charles Street
Suite 234
Baltimore, Maryland 21201

Last week, I mentioned that I’d come across an interesting story about a jazz musician and noted writer in Britain, who released a recording of his work begun in 1973. Keith Shadwick was a professional musician in Australia at the time, and he, along with drummer Gary Norwell, had formed a band called Sun, with a few other musicians. The group released one album, but then broke up. Keith and Gary recorded several jazz tracks before going their separate ways, and Keith revived the project off and on, in the mid 1980s and again in 2005 when he was diagnosed with mesothelioma.

A British record label, Candid Records, agreed to release the CD, and Keith recruited a number of musicians to fill in the gaps on the tracks to finally see the project through. The CD was called Free Time, a name initally selected because the original tracks recorded in 1973-74 were done during a recording studio’s down time, when a friend who worked there was able to lend Keith and Gary the space. But the liner notes, penned by Keith to tell the story of how the recording came together, tend to more solemn reflection.

“Then suddenly completion is in front of you and there is no free time anymore,” he writes, and it’s easy to see the dual implication of a completed project and a completed life.

Keith passed away just as the CD was pressed, and it is unlikely he saw it in its final form.

The special edition release of Free Time is available only through the Candid Records web site, and is shipped from the UK. Cost is £9.99 plus shipping, which totals around $24 U.S. once you figure in the exchange rate. But all proceeds from the sales will go to Bart’s Mesothelioma Research, an organization in Britain dedicated to the treatment of mesothelioma.

I received my CD yesterday. Full of free-spirited modern jazz tunes highlighting Keith on saxophone, the CD is joyful and jamming and sometimes poignant. It is perhaps hardest to comprehend when mesothelioma steals the breath of those who create music, before it steals their life.

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.

An article published by the Daily Inter Lake, which serves Northwest Montana, reports on a new study by Dr. Alan Whitehouse, a pulmonologist affiliated with the Center For Asbestos Related Disease (CARD) in Libby, Montana. Dr. Whitehouse’s study, published in the American Journal of Industrial Medicine, predicts an epidemic of mesothelioma cases in Libby in the next 10-20 years.

Dr. Whitehouse, along with four other physicians including CARD’s Dr. Brad Black, studied 31 mesothelioma cases, including 11 cases not previously reported. The study focused specifically on non-occupational asbestos exposure, including exposure to contamination of the community, the surrounding forested area, and areas in proximity to the Kootenai river and the railroad tracks used to haul vermiculite.

It is estimated that more than 200 people in Libby have died from asbestos-related disease, and CARD is following 2,000 additional asbestos cases. CARD primarily serves Libby residents who were affected by the W.R. Grace-operated vermiculite mine, which was in operation for many years, and at high capacity from the 1940s to the 1970s.

Focus has recently shifted to include people suffering from asbestos disease and mesothelioma who never came into direct contact with the vermiculite mining operation. In June, the U.S. Department of Health and Human Services and the Environmental Protection Agency announced an $8 million grant to fund a five-year study of the effects of low-level asbestos exposure.