I am super-late in posting this, but I wanted to share some photos from Heather Von St. James and family’s annual Lung Leavin’ Day celebration. Those of you who have followed Heather’s story here on myMeso know that this is the day that commemorates Heather’s decision to undergo an extrapleural pneumonectomy to remove her mesothelioma tumor.

Prior to the surgery, which removed Heather’s lung and part of her diaphragm, along with the cancer, her family gathered for the first Lung Leavin’ Day. They wrote their fears on plates and smashed them in the fire – a symbolic conquering! Today, Heather celebrates four years cancer free! The 4th Annual Lung Leavin’ Day Celebration was held Feb. 6, and Heather reports that more than 60 people joined her for the festivities. What a wonderful blessing to see Heather healthy and happy, surrounded by friends and loved ones!

Those of us who could not be there in person were there in spirit. Even our good friend Debbie Brewer celebrated “across the pond” in the U.K. I substituted a paper plate and the fireplace for china and a bonfire, but the sentiment was the same nonetheless. We love you Heather, and look forward to many more Lung Leavin’ Days in the future!

Pictured below is a photo of the fire, surrounded by broken plate shards.

Heather lit a candle in tribute to those who have lost their battle with mesothelioma, as well as in honor of those who are still fighting the battle. The names of the meso warriors were posted.

In the world of mesothelioma, we are so often surrounded by bad news, it is especially exciting to hear something good. Today I can share some of the BEST news. Those of you familiar with this site are familiar with Heather Von St. James, whose story we featured on this site. After being diagnosed with mesothelioma, Heather chose to have an extrapleural pneumonectomy, in which the affected lung, as well as part of her diaphragm and a rib were removed. Heather reports that her latest scans in Boston have come out clean and clear!

She was so excited, she posted the above photo on her Facebook page, and also allowed us to share it with you here, to let all her friends and fans see how well she is. Also, this scan provides a glimpse of what a body looks like after the extrapleural pneumonectomy, with only one lung. This is from her CT scan, done Nov. 3, 2009.

In the photo below, you can tell from her face and the enthusiastic “thumbs up” that she’s relieved and happy with these latest results.

We are ecstatic to see that Heather continues to be cancer free, healthy and strong! We love you, Heather, and pray for your continued good health!

Our friend Heather Von St. James, who lives in Minnesota and who recently celebrated her third anniversary of being cancer free after undergoing a pleural pneumonectomy to treat her mesothelioma, recently lost a friend to this disease. On Sept. 2, she posted the following beautiful essay on her Facebook page, dedicated to the memory of her friend Lonna. She gave me permission to share this here, and I thought it appropriate for the week leading up to Mesothelioma Awareness Day.

“So as I sit here today… another senseless death due to this horrible disease has happened, and another is near… two beautiful, bright and amazing women succumbing to a disease they got because of exposure to a substance that kills… and has not been banned. There is no more innocent victim than a mesothelioma victim….Someone told me that one time.. and the more people I know that are dying from this.. the more I believe it. Because someone hugged someone who worked with asbestos and had it on their clothes, they are now paying the ultimate price… their life.

I’ve said it before… Cancer is a weird thing… a true double edged sword… I know my life would not be what it is today had I not gotten sick with mesothelioma… I know that the people that have come into my life in the last 4 years would not have been a part of my life had I not gotten sick… On one hand… I have to deal daily with the fear that “IT” might come back… I don’t dwell on that fear, but it is an underlying current to every ache, pain and uncomfortable feeling I have that I can’t explain… My last stint in the hospital proved just that… My mind immediately went there… what if “IT” is back? On the other hand.. I would not be home to raise my daughter, and I would not have gotten to know so many of the amazing people in my life that I have… nor would I appreciate the small things. I do a lot of praying.. and even more during those times. My doc out in Boston told me after my 1st post surgery check up to go home.. and LIVE LIFE… just go on and live.. don’t let the diagnosis get in the way of living your life. Maybe he knows something I don’t… Having to face this illness every day with as many people as he does.. So I have done just that… despite the aches and pains that are with me every day.. I live my life.

When I know that others are suffering from this disease after fighting it so hard ,for so long, it just breaks my heart… Today, in honor of Lonna.. I am buying daisies…her favorite flower, I am going to have bouquets of them around my home and in them I will see her smile.. hear her gentle voice.. and in their simple beauty I will once again remember to live my life.

The circle of life continues on…. one passes, another is born… Kristi is going to have her baby any minute now. That simple joy of a baby doesn’t bring anyone back, but it brings hope… hope of a new, bright life. Despite the tragedy of losing so many friends and loved ones to this disease, I continue my hope that there will be a cure. Not just for this type of cancer, but for all cancers…. This month is Childhood cancer awareness month… Sept 26th is Mesothelioma Awareness Day… October is breast cancer awareness month… There are too many cancers, not enough months or days to be aware of them all… i just know what I am able to do in my little part of the world..and that is bring hope and joy to those around me… and live my life to the fullest… To remember my vow to be positive, and NOT live in the fear of “it” coming back…. I have my whole long life ahead of me to enjoy and I intend to do that.. and today I reaffirm that vow… Thank you God for every day that I have, for every day truly IS a blessing, and don’t for one minute take it for granted.. it can all change in a blink of an eye…

God bless you Lonna on the next step in your journey,I am blessed to have known you…”

I promised an update on Lung Leavin Day 2009, and here it is! Not really a story as much as some photos to share, courtesy of the day’s creator herself, Heather Von St. James (and her sister, Danna, who devised the name).

As you all know, Heather is a mesothelioma survivor. Diagnosed just over three years ago, she decided to undergo surgery at the International Mesothelioma Program at Brigham & Women’s Hospital. The surgery involved removal of Heather’s tumor, pleura, part of her diaphragm, and her left lung.

The date of the surgery fell coincidentally on Groundhog Day, prompting an instant slew of jokes from the patient herself – she asked her doctor if her tumor saw its shadow would she have six more weeks of recovery? – and her sister, who renamed the day Lung Leavin Day, which stuck.

February 7 was set for the Third Annual Lung Leavin Day celebration, as family and friends gathered at Heather’s home in Minnesota to celebrate life and let go of their fears. They wrote their worries on plates and smashed them into the fire, and took a moment to cherish friends and family.

Hooray for Heather!!

Regular readers of this site will no doubt remember the incredible story of Heather Von St. James that we shared not long ago. Heather was diagnosed with mesothelima just over three years ago, at the young age of 36, shortly after having a baby, daughter Lily Rose.

Stunned by the diagnosis and it’s bleak prognosis, Heather decided to undergo a radical surgery pioneered by Dr. David J. Sugarbaker at the International Mesothelioma Program at Brigham & Women’s Hospital in Boston, Mass. The procedure involved removing the tumor, pleura, part of her diaphragm, and her left lung.

The surgery was scheduled for Feb. 2, Groundhog Day, but Heather’s sister Danna promply dubbed the day “Lung Leavin’ Day.”

Heather’s surgery was a success, and she holds fast to the belief that she is cured. On the first anniversary of the surgery, she decided to have a party to celebrate life and hope. And the Lung Leavin’ Day annual celebration was born!

Heather, along with family and friends, commemorates the day with a huge bonfire. They write their fears on plates with a Sharpie marker and smash the plates into the fire in a symbolic releasing of those concerns.

The event has grown from a few close family members to include more than 40 people this year, on Saturday, Feb. 7, date of the Third Annual Lung Leavin’ Day.

Even if you can’t travel to Heather’s home in Minnesota to join the party, she encourages families battling meso and fellow survivors to use the day as an opportunity to celebrate life and to face the future with courage and optimism.

“I would love it if people all over celebrated with us,” she says. “They can do something as simple as raising a toast to health or dancing around a fire and plate breaking! Whatever you want to put in!”

The official celebration begins at 6 p.m. Central Time. I’m planning to definitely raise a glass and think of everyone I’ve met here through this web site, and all those I haven’t yet but who are struggling in their own fight against mesothelioma. There is so much hope, there are so many wonderful stories of success in this fight.

I know that together we can beat this cancer!

Lung Leavin’ Day! WOOT!

It has been three years since Heather Von St. James chose a radical surgical treatment following her mesothelioma diagnosis. Just 36 years old at the time of the diagnosis, Heather is an anomaly in many ways in the world of meso – she’s female, and she is very young. The average meso patient is older, usually around age 60 or older, and male.

Heather also is unusual in that she is a survivor. Mesothelioma is a deadly disease, very often killing its victims within two years of diagnosis. This is partly because meso can be hard to diagnose, and is often mistaken for pneumonia or other minor ailments, until it is caught late, at an advanced stage, too late to treat effectively. There is no known cure.

A persistent fever, fatigue, and a heaviness in her chest prompted Heather to visit the doctor two months after the birth of her daughter, Lily, in August 2005. She knew her symptoms were not related to the usual exhaustion of new motherhood. By Nov. 21 Heather was diagnosed with mesothelioma, and less than a month after her diagnosis Heather was in Boston at the International Mesothelioma Program (IMP). Two months later she completed surgery, an extrapleural pneumonectomy, to remove her tumor and her left lung.

She believes that God had a hand in the quick diagnosis and treatment, allowing her to battle her mesothelioma before it was able to advance.

“I am not the norm,” she acknowledges. “Too many people die from this disease – young, old, everything in between. But more people are surviving it now. We are out there. And I think that needs to be out there more.”

Heather understands that when she tells people she is cured – a diagnosis her doctor, Dr. David J. Sugarbaker, who pioneered the mesothelioma program at IMP, cannot officially confirm – it makes some people angry. But, she says, she has to make her own choices, and part of her recovery is believing that the meso is gone for good.

“Life is a death sentence, and we all get so caught up in the death part of it. [Having meso], it’s like you sort of know your chariot home. It was sort of an eye-opener for me,” she says. “But it also made me really want to stay. I have a baby daughter. I am not ready to stop being a Mom to her. I am not anywhere near ready to go. What got me through a lot of dark times was my relationship with the Lord, and my positive attitude.”

She is eager to share her story, as much to give hope to other mesothelioma patients as to raise awareness and support for a cure.

“There is the 80 percent that don’t make it, but there is the 20 percent that does. That statistic is there for a reason, because it’s true,” she says.

Heather regularly attends new patient orientation at IMP when she returns to Boston for her check-ups, looking for the opportunity to meet other mesothelioma patients and their families. She hopes she can answer their questions, help calm fears, and provide a sense of hope.

“I’m the face of ‘after.’ That’s still rare. I want to talk to patients, to give them hope.”

A full-time social worker and two chaplains work at IMP, and there are regular support groups each week for families and patients, both while they are at IMP for surgery, and when they return for follow-up visits. Heather also attends these meetings when she is in Boston.

Additionally, last October Heather was a special guest speaker at an annual symposium hosted by Dr. Sugarbaker for IMP supporters, physicians and researchers.

“Researchers never see the real people that all these cells they’re working on are attached to. Dr. Sugarbaker wanted to give a face to all these cells,” Heather said.

Heather and her family also hold their own annual celebration on Feb. 2, the date of her surgery, dubbed Lung Leavin’ Day by her sister, Danna.

On the first anniversary of her surgery, she and her husband Cameron built a huge bonfire. Cameron collected two plates and a Sharpie marker, and they wrote their fears on the plates, then smashed them into the fire. Danna and her husband, Wayne, had their own Lung Leavin’ Day celebration at their home in Portland at the same time, in solidarity.

Last year, on the second Lung Leavin’ Day, more than 40 friends and relatives gathered to celebrate Heather’s health.

“It’s a celebration of life,” she says. “That’s the day when my life started over. My cancer was gone.”

Heather is exploring volunteer and outreach opportunities in Minnesota, where mesothelioma is literally an epidemic, responsible for the deaths of nearly 60 taconite miners in its Iron Range, and affecting dozens more. In April, the Minnesota State Legislature approved nearly $5 million for a study of the Iron Range and mesothelioma.

In another tie to her home state, the current bill before the House of Representatives that would finally call for a complete ban of asbestos in the United States is named after late Minnesota Congressman Bruce Vento, who died of mesothelioma in 2000. The Bruce Vento Ban Asbestos and Prevent Mesothelioma Act of 2008 is currently before the House Committee on Energy and Commerce.

As a result of these two issues, people in Minnesota are perhaps more aware of mesothelioma than most other places in the U.S. Heather hopes to do what she can to continue to expand the message, with the hope of saving more lives through awareness, outreach and fund raising for a cure.

“I know I’m here for a reason,” she says. “[Other cancers] get so much attention and funding. Why can’t we have a 3-day walk for mesothelioma? It needs to be out there. We’re just going to see more and more of this disease.”

In the meantime, Heather concentrates on staying healthy for her daughter, Lily, whom she calls a “fourth generation flower.” Heather’s grandmother was Rose, and her mom is Violet. So she claims cured, and counts her miracles, and keeps the fear at bay while she builds that garden.

You can contact Heather Von St. James through email at red7ro7r@hotmail.com or call her at 651-330-3614. She welcomes calls from mesothelioma patients and families.

Heather Von St. James knew having a baby was a physically taxing experience, but the weeks of exhaustion, night sweats, and constant fever following the birth of her daughter, Lily Rose, in August 2005, just didn’t seem right. She was only 36; she ought to bounce back faster than this, she thought.

Within two weeks, the Roseville, Minn., resident visited nearby St. Paul for a checkup. Because of the fever, combined with a feeling of pressure in her chest that made breathing labored, doctors suspected a virus affecting Heather’s heart.

They ordered a chest x-ray, which showed fluid around the lung, so they sent her to the hospital for a thoracentesis to drain the fluid. During that procedure, they found a liter of fluid around her lung. Concerned, they sent Heather for a CT scan to find out where the fluid was coming from and what was causing it. The test revealed a tumor on the pleura. When they tested cells and fluid from around the lung, they were stunned by the diagnosis of mesothelioma.

Not quite believing this disease could affect such a young woman, they sent the samples to the Mayo Clinic for a second opinion. On Nov. 21, 2005, Heather got confirmation – she had mesothelioma. Even the Mayo Clinic physicians had only heard of one other woman Heather’s age with meso.

Mesothelioma has traditionally been seen in older men, usually with a background of working in a factory, shipyard, mine or other environment with heavy asbestos exposure. Today, however, more and more cases of secondary exposure are being diagnosed. Family members who receive only relatively minimal exposure through contact with clothing or other items dusted with asbestos are developing meso.

Heather’s dad worked around asbestos, as a fireman, and also in construction work, where he did remodeling and renovations. A self-proclaimed “Daddy’s Girl,” Heather figures she was exposed to asbestos in the dust on his clothing.

“That’s what ticks me off,” she says. “(Manufacturers) knew what [asbestos] did, (they) knew what it was. But they didn’t tell anyone.”

Heather, with her husband Cameron at her side, was given three choices for dealing with her diagnosis – do nothing, with an expectation of living about 15 months; pursue traditional chemotherapy and radiation treatments, with a life expectancy of about 5 years; or take a risk on a bold groundbreaking surgery at the International Mesothelioma Program (IMP) in Boston.

They decided to take the risk, and were in Boston by Dec. 12 to meet with Dr. David J. Sugarbaker, who has pioneered the treatment of mesothelioma at the Brigham & Women’s Hospital. The surgery, an extrapleural pneumonectomy, would involve the removal of Heather’s lung, pleura, pericardium and diaphragm.

At IMP, Heather and Cameron attended a new-patient orientation, and met two other families facing the diagnosis of mesothelioma. Both of the other patients were men, aged 72 and 80.

“It was really hard to be there. It was so surreal, having just had a baby four months earlier, and now I’m in Boston talking about going through this major, major surgery, talking to these men who worked around asbestos,” Heather says.

As part of the initial visit and evaluation, Heather underwent surgical biopsies on the tumor and on her esophagus, so that doctors could check for lymph node involvement.

Heather and Cameron returned home to spend a worried Christmas with their new baby while they waited for the results of the biopsies. The tests reconfirmed the mesothelioma diagnosis and revealed that the tumor was localized on the left part of her lung, on the pleura. Thankfully, the lymph nodes were clear.

Surgery was scheduled for Feb. 2 – Groundhog Day. Heather promptly nicknamed her tumor Punxsutawney Phil, after the famous weather-predicting groundhog, and joked with her surgeons that if her tumor saw its shadow would she have six more weeks of recovery? Her sister renamed the holiday Lung Leavin’ Day.

Shoring up her courage with humor, Heather set her mind on a positive outcome. She was not ready to leave this world.

Next: Part II – Surgery & Recovery