Surviving Mesothelioma: Heather’s Story

I’m taking the blog in a different direction this week to educate my readers about a couple things that are way more important than competitions or workouts.

First off, September is Blood Cancer Awareness Month. This is something very near and dear to me since my mother passed away from Lymphoma over a year ago. You can donate this month (or anytime) to make a difference right here at LLS.org. This is an organization I trust and continue to support in the research that they do for treatments and a CURE for blood cancer.

You can learn more about Leukemia and Lymphoma on their FB page or their website. I know everyone heard about ALS these past few months due to the Ice Bucket Challenge and that’s wonderful. Education is very important when it comes to diseases that don’t get a lot of attention.

I rarely use this blog to talk about my own chronic condition: Ulcerative Colitis. I’m literally sitting here typing this at the Cleveland Clinic getting my Remicade infusion, the ridiculously expensive treatment so I stay in remission. I get this every 8 weeks. But I never talk about it too much. Perhaps that needs to change…a blog post for another day. Not today though.

Today is about someone else. Someone I have never even met or spoken with. Today is about Heather Von St. James.

Today, September 26th, is Mesothelioma Awareness Day. Yes, just one DAY dedicated to this disease that I would be willing to bet many people don’t know about.

I’ll be the first to admit my limited knowledge of this disease: I heard it mentioned on commercials for attorneys looking for patients who could be part of a class action law suit. I knew it had something to do with asbestos. And I knew it sounded bad.

Yep…That’s the extent of it.

When we don’t know someone affected by a disease, do we care? Should we care? No one expects us to be experts at every chronic disease, right? That wouldn’t be realistic. But, when someone we love and care about comes to us and says, “I was just told I have _____________,” what’s the first thing we do? We do as much research as we can! We find out the causes, the treatments, the survival rates, who’s the best doctor in town or the state or the country that can help.

Well, imagine someone just told you that you have Mesothelioma. And now read Heather’s story and see what you can do to spread awareness. I’m doing a small part by sharing Heather’s story. You can share it today too and educate a bunch of people too when you’re done reading it.

That’s called spreading the knowledge. That’s called making a difference.

HVSJ

Heather Von St. James was diagnosed with Mesothelioma at age 36. Same age as I am.

Imagine being told you have 15 months to live. That’s what happened to Heather on November 21st, 2005. And I sit here in this hospital right now picturing a doctor coming in the room telling ME, right now, “You have a extreme form of lung cancer. You have 15 months to live.”

What is the first thing I would do? I can’t even imagine…I suppose I would want to know how I got it.

Heather developed this disease because her father worked in construction. You read that right, her father worked a job that caused this disease because he would come home from work and had some dust on his clothes. Heather would play outside and put on his coat sometimes. That’s the gist of it. Something that sound so simple, almost an afterthought, caused this awful disease.

You may have been one of those people who associate asbestos with the older generation and so “not your problem.” Well, Heather was just 36 as I mentioned when she was diagnosed. Turns out, diagnosis in women is on the rise because of this very problem: They have contracted it from their parents (father’s, most likely) from second hand exposure.

This begs the question – How does this stuff even get into our bodies and lay dormant for so long?

Asbestos enters your body and settles into the linings of your lungs from all the furniture, floors, walls and insulation sheathings where it was “living.”  It can lie dormant for up to 50 years, DECADES, before showing signs of Mesothelioma to those who have been exposed, at which point the risk is critical.

Here’s where the story goes from tragic to a fight: Heather had just given birth 3 months prior to her daughter Lily. She’s a brand new mom. Her husband a brand new father. Imagine these parents being told this news. This horrific news. I’m trying to imagine it now and I just can’t grasp it.

Lily, born August 2005
Lily, born August 2005

What are the facts about Mesothelioma? Well, upon doing even the most basic Google search, Heather probably read that she was one of the 3,000 people diagnosed with this disease per year. It doesn’t sound like such a large number, and I suppose it isn’t. But just because it’s rare doesn’t mean it shouldn’t get attention. When something is rare, what happens to the funding for treatments or cures and studies? Probably not a whole lot of those going on because the awareness is minimal. But that’s why sharing Heather’s story is so crucial and so important.

A quick word about asbestos: It’s not banned in the United States. Yikes. Another startling fact: Over 30 years after its’ rise in the industry, asbestos remains as the most frequent cause of occupational cancer. Despite this, the U.S. continues to service out 30 million pounds each year, in homes, schools, and commercial buildings. So something that we once thought of, and continue to think of as an old problem, is a silent predator.

surgery
Surgery day – or as Heather now calls it “Lung Leavin’ Day.”

After Heather and Cameron realized the survival rate was so low, they decided what was most important was to find the best doctor.  That’s what you do when you’re ready to do battle; arm yourself with the best weapons. They found the best surgeon who was able to give Heather her best option for survival: extrapleural pneumonectomy. That’s a the technical term for Lung Removal.

On February 2, 2006 Heather underwent this long, intensive operation with a 55 percent complication rate and a 3 percent risk of death. Her husband told her, “Lily needs her mother. That’s the way I kept Heather’s hope up.”

Heather took 3 months to recover from the surgery. And today, 8 years later, she is a voice of hope for those that need one so desperately.

She says she doesn’t keep her cancer a secret from her daughter. Lily knows “Mommy had cancer” when she was a baby. But now she knows that “Mommy is a fighter and a survivor.”

Cam_Lil_HVSJ

Heather’s story has been shared many times by many bloggers and by Heather herself on social media and her webpage. It just goes to show that 1 person can make a huge difference. Even by sharing my blog today, you are making a difference in someone’s life. You are spreading that message of HOPE. She says she’s a Voice for the Victims. But I like to think she’s a voice for the FIGHTERS. 🙂

I picture myself, in that hospital room, getting a visit from a doctor. He tells me the worst news possible. In my case, I have an increased chance of colon cancer. What if I was told that today? I’d be terrified. I’d probably panic. But after the anger and stress and sadness and despair would wear off, I would hope that I would start educating. I would start sharing my FIGHT with you. With anyone who would listen.

Because that’s what survivors do.

Do yourself a favor and check out these resources for more information on Mesothelioma facts and treatment:

http://www.mesothelioma.com/treatment/
http://www.mesothelioma.com/mesothelioma/

And please follow Heather on Facebook and Twitter.

Thank you for SHARING and taking part in Mesothelioma Awareness Day!

One thought on “Surviving Mesothelioma: Heather’s Story

  1. Surviving Mesothelioma – It is truly touching when you hear about people who have concored the deadly lung disease mesothelioma. This blog post and the mesothelioma sufferers it is dedicated to, is a true testament to cancer survival stories.

    If you are interested in learning more about mesothelioma and it’s effect’s visit this great mesotheioma resource site I discovered here: http://survivingmesothelioma.link

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