Thursday, April 5, 2012

Breathing. It's kind of a necessity

Just go ahead and take a deep breath for me... and another. Feels good, hey? Now imagine trying to do that with a litre of fluid on your lung. From cancer. While holding your three month old daughter.


But fear not. This is a good news story. Heather Von St James is a survivor.

Some quick background: Mesothelioma is a cancer of the protective lining of the body cavities and internal organs, such as the lungs, heart and bowel. Asbestos is the main cause of mesothelioma. Heather was exposed as a child, when her father would return from his construction job covered in a fine white dusting of asbestos fibres. After exposure to asbestos, it usually takes more than fifteen years for Mesothelioma to develop.

Heather and her gorgeous family

Now back to Heather. After being diagnosed, and when her baby girl Lily was just six months old, Heather underwent a radical procedure that involved the removal of her left lung, the lung lining, her heart lining, her sixth rib and the left half of her diaphragm. The amazing doctors then replaced it with more Gore-Tex ™ than is in your average tent, and bought her another six years and counting.

But the truly amazing part of this story is not the doctors (although they are), not her survival (although it is) but her ATTITUDE.

Heather asked to share her story with you:
In November of 2005, I was a new mother. My only child was three and half months old. My life was at a happy place. Then, I was diagnosed with malignant pleural mesothelioma. It looked like I was going to die. Everything had changed. It was hard to think of anything that could have possibly been worse, short of a loved one suffering my illness. 
Nonetheless, I found strength in myself that I never thought I had in me. That strength was found at the Boston Brigham and Women's hospital, where Dr. David Sugarbaker, one of the worlds leading mesothelioma doctors, told me just how deadly my disease was, but that I had a chance to fight it. I had a two percent chance of living more than five years past my diagnosis. I latched on to the word chance and started to fight. 
Naturally, my fight included surgery, chemotherapy and radiation. The first step was a difficult surgery that robbed me of my left lung. It also took out a tumor that was threatening my life. My daughter was safe with family nearly 2,000 miles away from Boston where I underwent the surgery. After that, my life was wrapped up in the infamously difficult chemotherapy and radiation that comes with cancer. I was sick during the entire first year of Lily's -- my daughter's -- life. She was thankfully oblivious and around her first birthday, I was done with treatment and rid of my cancer. I wanted to stay that way. 
One of the most important lessons I took from my struggle with cancer is that life is meant to be lived to the fullest. If it is worth fighting for, you cannot take anything for granted. The little things in life matter just as much as the big things. It is good to appreciate everything, especially the things that I love. You never know how short or long your life will be. Wasting time is not worth the risk. Because of frequent trips to the hospital and a wish to be involved with others going through the same thing, meeting some other fighters was unavoidable. I met people whose strength was inspirational. These people were family members of people with my disease and those people fighting with me. In some cases, they are no longer able to live life to the fullest. However, every single one of them tried. 
It is because of these people that I am determined to let everyone know about mesothelioma and the people who suffer from it. It is also important that people know it is survivable and we can do something about it. No matter what life throws at me from now on, I intend to live it to the fullest. Every little scrap of life I can get my hands on will be appreciated and adored for the precious moment that it is. No matter how bad things get, there is something to be grateful for -- a reason to keep on living. 
When I found out I had mesothelioma, I easily could have given up after reading statistics on the disease. The survival rate was dismal (2%) It’s not very encouraging to read when you are diagnosed with a disease, but instead of giving up, I made up my mind; SOMEONE has to be in that 2%. That someone was going to be me. And 
now, almost 6 years later, I am considered a long-term survivor. My attitude is this; I survived for a reason, to spread hope and awareness about mesothelioma.

And spread hope she does. Every year Heather hosts a "Lungleavin' Day" at her home, where those afflicted by cancer, and their friends and family can gather around a bonfire, write their fears on a plate and then smash it to smithereens. What an inspirational way to turn losing a lung into a positive!

But, besides the obvious, why did I decide to share this on a small Australian blog?

Because exposure to asbestos is the main cause of mesothelioma, and Australia was one of the biggest asbestos users in the world. There is a phenomenal amount of asbestos in our buildings and other infrastructure. As a result, the Australian Mesothelioma Registry Website states "we have one of the world's highest rates of mesothelioma and it is estimated that this is yet to peak."


So take the time this weekend to have a browse of the sites below, and get informed. And if you're doing any construction work, maybe a little DIY on that 1950's beach cottage, get it checked for asbestos before you start!

Heather's Blog - really worth a read

Mesothelioma on Wikipedia

Australian Mesothelioma Registry

So, gentle readers, after hitting you with that, do you have any survival stories you want to share? Or any questions for Heather? She will be lurking around the comments board, so feel free to leave her some encouragement!


  1. This comment has been removed by the author.

    1. Ooops apologies for removing my previous post with too many typo's ... as I was saying ...

      No survival stories to match that doozie. Sending mega hugs for a long, fabulous life to the gorgeous Heather and her Lungleavin Day gang.

      Heather's story is a perfect reminder for people to make sure they're on the Organ Donor registry.

      Excellent, uplifting post, Thank YOU ;~)

  2. Thanks so much Cherie! All the best to you, too!

  3. Such an inspriational story Heather. Thanks for sharing this Mrs A.
    My cousin has (fingers crossed) beaten breast cancer. Diagnosed last year and losing one breadt and undergoing Chemo and Radiotheropy she did the bravest thing last week and went and got the other breast off. Her reasoning "Why have them if they are going to kill me" They can not tell her if she will live to see her two boys (6 and 4) graduate college or marry. But if by chance the other breast wants to kill her down the track it now cant. By the end of May she will have a new set that won't want to take her life.

  4. My dad was an electrician in the 60s and 70s. He said he's come across a lot of asbestos. So far he's really healthy and in his 70s. I hope stays that way.