Wednesday, May 2, 2018

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 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...

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