Revisiting Mesothelioma Survivor Heather Von St. James

Mesothelioma is one of the most aggressive and deadliest form of cancer there is and, upon diagnosis, most people are given little more than a year to live. There is no known cure for the disease and the future continues to look grim as attention to the disease, as well as research funding, continues to decline. 

Four years ago, in an attempt to help her fulfill her personal mission and spread awareness of this rare and preventable disease, I did an interview with my friend and mesothelioma survivor, Heather Von St. James. I would like to encourage you to read (or reread) that interview by clicking HERE so as to better understand what mesothelioma is and to familiarize yourself with Heather's story.

Mesothelioma Survivor Heather Von St. James

Heather and I have talked about getting together to do a revisit for quite sometime and have , finally, gotten around to getting it done. Below are the questions that I asked and Heather's answers. Following that, highlighted, italicized, and in parenthesis, are any responses I may have had to Heather's interview answers. 

1. Heather, thank you for doing this interview with me! It's been nearly four years since the first interview and I know that a lot of things have happened in both of our lives since then. For you, what is the most significant thing that has happened to you in that period of time?

I would say remaining cancer free is right up there! I have been doing some pretty exciting things. My daughter and I were part of a huge ad campaign for Baylor College of Medicine, then I partnered with Greenpeace to do a video and petition about the EPA and the disaster of what would happen if it got shut down. Those were probably two of the biggest things I've done. 

(It sounds like you've been staying busy for sure, Heather! I wish you well as you remain in the trenches and continue the fight for mesothelioma awareness.)

2. In our last interview you stated that you get a check-up every six months and, at the point of our last visit (May of 2014), things were looking good and you were taking that to mean that you were cancer-free. Was that the case? Are you still cancer-free today? And what is your prognosis at this point?

They say I have No Evidence of Disease, or NED :)  So that makes me super happy.. no detectable cancer.  Frankly, my prognosis isn't discussed. I'm 2 years beyond my best case scenario...so they honestly don't know what to expect. My doctor will never use the word "CURE", but we know that the surgery and treatment was successful. I don't take the fact that I am still NED lightly...and I want to use my survivorship to help others. It remains my mission. 

(I'm so thankful that you have remained cancer-free and are here to share that testimony. It's awesome that your mission remains strong!)

3. At the point of our last interview, asbestos was still the number one cause of occupational cancer in the United States. Has anything happened to change that during the last four years?

Sadly, no. We did have some headway by getting asbestos named as one of 10 chemicals to get a closer review under EPA guidelines, then the election in 2016 changed all of that.  This administration is not a fan of safety regulations or the EPA. In fact, the president doesn't believe asbestos is harmful and the head of the EPA has said he needs to do more research to determine whether or not asbestos is dangerous.  For the next four years, at least, I don't expect those statistics to change for the better because of this fact. 

(This makes me sad. Hopefully, things will change and the importance of research into the dangers of asbestos will become a priority.)

4. As you know, I keep up with you on Facebook, Heather, and recently I saw pictures of you with a van that had you and your daughter's picture painted on the side of it. What's up with that?

I was contacted by the PR department of The Baylor College of Medicine and asked to be a part of an ad campaign centered around all the amazing things Baylor docs have done for their patients. There is a rodeo pro, a collegiate athlete, a world traveler, and me, all here because our doctors pushed the boundaries and saved our lives. Lily and I were flown down to Houston, put up in a nice hotel, which Lily LOVED, and we did a photo shoot with an interview. The photo was put on a couple of shuttle vans on the Baylor college of Medicine, along with a huge installation at Houston Bush Intercontinental Airport that marked all the "Firsts" I've been able to be here for in Lily's life. That was 2 years ago and it is still there. :) 

(That is so awesome!!! What a great way to spread awareness!!!)

5. Since our last interview, Heather, overall what positive changes have taken place for those that are suffering with mesothelioma? 

Immunotherapy has shown some promise in many cases, lengthening survival rates. Surgery remains the number one most effective weapon against mesothelioma, but now they re coupling immunotherapy with the surgery. It is too early to determine success, but I know some results are looking good. Researchers are also realizing that this disease is not going away and more work needs to be done. That is why I support the Mesothelioma Applied Research Foundation in funding valuable research into mesothelioma. 

(I highlighted the link to the Mesothelioma Applied Research Foundation. If anyone is interested in supporting or learning more about it, just click on the highlighted link above.)

6. My father died, it will be, two years ago come May 9th, not of mesothelioma, but of silicosis, which is another occupational-related disease of the lungs. I know how he suffered and my heart goes out to you and all others who have battled, or are battling, diseases like these. I asked this question in the last interview, but, we're four years further down the road now, Heather, so I'm asking it again. What is the main message that you are trying to get across to people in your quest to make them them aware of mesothelioma? And what can my readers do to make a difference?

I'm so sorry for your loss. It has been 4 years since my dad passed from renal carcinoma, so I feel your loss.

I just want people to be aware of this disease and that it is more than a commercial on TV.  Patients are getting younger and younger as a result of the 3rd wave Do-It-Yourselfers who unknowingly exposed their families in renovation projects on their homes...scraping popcorn ceilings, tearing out vermiculite insulation, or knocking down walls and duct work that contains asbestos. People STILL don't know asbestos isn't banned in the US, so along with mesothelioma awareness is asbestos awareness. My mission is to just simply spread the word. There is no safe level of asbestos exposure. 

(Thanks, Heather! I appreciate your kindness. I don't know how far this blog post will go, but I really hope that it will help get the word out...not only about mesothelioma, but about the dangers of asbestos, as well. I am asking my readers and their families to please, please, please do a little research and take necessary precautions when doing do-it-yourself home projects, and, please, pass this message along to others. Who knows? It could save a life!)

Heather, thank you for doing this second interview with me and I will continue to follow your progress and the progress of mesothelioma and asbestos awareness in the days ahead. Please feel free to share updates with us as you can and I will be happy to pass them along to my readers.

Blessings to all...

~Rebecca

Recent and related posts that you might be interested in reading...

An Interview With Mesothelioma Survivor Heather Von St. James

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An Interview With Mesothelioma Survivor Heather Von St. James

Mesothelioma Survivor Heather Von St. James

Mesothelioma is one of the most aggressive and deadly cancers that there is and, upon diagnosis, most people are given little more than a year to live. There is no known cure for mesothelioma and the future continues to look grim as attention to the disease, as well as research funding, continues to decline. 

Since May is National Cancer Awareness Month, I have decided to help my friend, reader, and mesothelioma survivor, Heather Von St. James, fulfill her personal mission to spread awareness of this rare and preventable disease, by sharing her story on this blog. I hope that, as fellow readers of this blog, you will, not only read, Heather's story, but pass it on and share it with others, which will further help Heather in completing her mission. 

At the age of 36, 3 1/2 months after the birth of her first and only child, Heather Von St. James was diagnosed with mesothelioma and given just 15 months to live. Miraculously, Heather beat the odds and, eight years later, is still here to talk about her experience. 

In an attempt to understand a little bit more about mesothelioma and what Heather has been through, I sent her a few interview questions. Below are the questions I asked and Heather's answers. Following that, highlighted, italicized, and in parenthesis, are any responses I may have had to Heather's interview answers. 

Heather, thank you for being kind enough to do this interview with me. :)

1) Heather, I, personally, had never heard of mesothelioma before you contacted me through my blog and made me aware of it. Can you explain to my readers just what mesothelioma is?

Mesothelioma is cancer of the lining of the organs. The lining is called mesothelium, hence the name mesothelioma. It is almost always caused by asbestos exposure. There are 3 main types. Pleural mesothelioma is the cancer of the lining of the lung, peritoneal is the cancer of the lining of the abdomen and pericardial, which affects the lining of the heart.

(I know from reading Heather's page that it is pleural mesothelioma that she was diagnosed with.)

2) I was born in 1961 and remember asbestos being common in building materials and other products. I remember my mom having an asbestos burner cover, and the house I grew up in was covered in asbestos siding and we had asbestos shingles on our roof. In fact, the house that we live in now is very old, and, in thinking about it, I am 99.9% positive that the shingles that are on our roof right now are asbestos shingles. (Arrghh!) How and when were you exposed to asbestos?

My father worked with it when I was a child. He did demolition and cleanup work and did a bunch of drywall work. Back in the day, drywall mud and spackling had asbestos in it. He would come home from work with his jacket covered in this grayish dust that was literally caked on his coat. I would wear his jacket when I had chores to do outside because I didn't want to get my own dirty, besides wearing my dad's coat was comforting. It felt like wearing a hug. It was most likely the dust from this coat and from his car that I was exposed. 

3) When were you diagnosed with mesothelioma? And what was the prognosis? 

I was diagnosed on November 21, 2005, 1:30 pm. Just 3 1/2 months after my only baby was born. My prognosis was quite grim if I didn't take drastic measures to save my life. 15 months if I did nothing. Not very promising. 

4) What's the story behind your beating the odds? And where do you stand now? Are you cancer-free?

We caught it early, and I had excellent medical care. I saw the worlds leading specialist in the disease, and we threw everything we could at it. Major surgery to remove my left lung, heated chemo during surgery, followed by 4 sessions of chemotherapy and 30 sessions of radiation. We left nothing to chance. I just got back from Boston and a check up. I go every 6 months and everything looked great. No evidence of disease. I take that to mean cancer free. :)

(Yeah! I am so glad to hear that you are cancer free! That's awesome! Praise the Lord!)

5. I was reading on your site that asbestos is still the number one cause of occupational cancer in the United States. How can that be? Didn't they ban the use of asbestos in the 1970's? 

They TRIED, but it was overturned. Asbestos is still imported to the tune of 100,000 tons a year and still used in many industrial and commercial settings. Despite the very well known and documented health hazards, it continues to be used. 

(I had no idea! I've believed all these years that asbestos was done away with years ago. Thank you for bringing this to our attention and making us aware of this fact.)

6. What is the main message that you are trying to get across to people in your quest to make them aware of mesothelioma? And what can my readers do to make a difference?

Awareness is the beginning to getting people talking about and taking action on the disease. I want people to know that mesothelioma is a very real and dangerous condition that strikes all ages, and not just people who worked with asbestos. It strikes young and old alike. Until people stand up and start demanding action, asbestos will continue to be used and people will continue to die needlessly. You can call your government officials and urge them to appropriate money for mesothelioma research as well as ban the use of asbestos. 

(You heard it, Readers! Let's help Heather get the word out by calling our government officials and urging them to appropriate money for mesothelioma research, as well as ban the use of asbestos. Let's call today while it's fresh on our minds. To contact your senators and representatives click HERE.)

7. Heather, I would love to share your video on my blog. May I have your permission to do that?

Please do!!! I would be honored if you would!

(Here is that video now...)

For further information on mesothelioma and it's effects, please, visit the Mesothelioma Cancer Alliance by clicking HERE. 

To learn more about Heather Von St. James and her story, please, visit her blog by clicking HERE. 

Heather, again, thank you for making me aware of mesothelioma, and for sharing your story with me and my readers. I pray that the Lord continues to bless you with good reports concerning your health, and that your dreams are realized in getting the word out about mesothelioma until a cure is found. My thoughts and prayers will be with you always. 

Until next time...

All My Love,

~Rebecca 

#mesothelioma, #HeatherVonStJames

One Thousand Gifts - #36 - an unexpected supper date with Amanda, #37 - a beautiful hand-made card from someone very special, and #41 blueberry pie warm from the oven