What is Mesothelioma, Anyway? 10 Quick Things You Should Know

September 26th is Mesothelioma Awareness Day, so I’d like to turn the mic over to my dear husband, Paul. “Enough with the Liz chronicles. We want Paul!” said everyone, everywhere. 

I hear ya, I do. Let’s talk about meso.

If you’re asking Google (like I did 5 years ago when Paul was diagnosed) you’ll mostly find lawyer ads and a lot of bleak statistics. Like these numbers are not going to make you feel good. 

There’s a lot of unhelpful information about mesothelioma floating around the Internet. So it was by divine intervention (or something like it) that I was able to find the Mesothelioma Applied Research Foundation while desperately searching for financial assistance a few years ago.

This organization is the real deal. They are: 

“the only nonprofit, charity organization dedicated to ending mesothelioma and the suffering caused by it, by funding research, providing education and support for patients and their families, and by advocating for federal funding of mesothelioma research.”

It's true! Personally, the Meso Foundation helped our family finance a trip to meet with a specialist in Chicago. They also host a yearly Symposium on Malignant Mesothelioma, which we attended in 2015. This event connected us with other specialists in the field as well as families struggling with the same issues we were (a first, for us.)

I’m no clairvoyant, and I don’t presume to understand the seemingly insignificant, everyday decisions that can redirect our ever-flowing lives. But I do believe discovering the Meso Foundation truly CHANGED OUR LIVES.

Because: where would we be if they had never introduced Paul to the team at the National Institute of Health? Would he still have elected to be treated by them? Would he have chosen a different course of treatment? Would we have been given these years that we’ve enjoyed together?

I don’t know.

What I do know is that, for the average person, mesothelioma is a disease shrouded in mystery. Everyone, it seems, has some connection to breast cancer. Maybe their sister had it, or their aunt was recently diagnosed, or they went through treatment themselves. Quite literally, and sadly, everyone I talk to has a breast cancer story.

But when someone asks what type of cancer Paul has, it's all raised eyebrows and variations of “oh, the cancer with all the lawyer commercials? How did he get that?”

Most people know two things about mesothelioma: (1) It’s associated with asbestos exposure, and (2) it can make you filthy rich if you talk to the right lawyer (not the case.)

In the spirit of patient advocacy, I’d like to shed some light on the lousy cancer my husband has been wrestling with for the past 5 years.

10 Things You Should Know About Mesothelioma (because this stuff kills)

1.  Typically, meso is caused by asbestos exposure—but not always. As Paul’s surgeon put it, “sometimes it’s just bad luck.” We’ve never been able to pinpoint a definitive place or time where Paul could have been exposed, though we have our suspicions. But suspicions do not a lawsuit make. (We've tried. With three different law firms.)

2.  Asbestos is still present in thousands of older construction and housing products like insulation, siding, and floors. If your home was built before 1970, there’s a chance asbestos is lurking in the materials. Which brings us to fact # 3...

3.  I know DIY is all the rage, and there are at least 16 variations of Fixer Upper on TV (I love these shows, their hosts are magical visionaries.) But don’t tear up your dated kitchen tiles before calling a certified abatement crew to identify any questionable materials in your home. Asbestos is safe as long as it’s contained, but once you disturb it, it’s game over. Let the professionals remove it or encapsulate it. The right way.

4.  Asbestos STILL isn’t banned in the US. This makes my blood boil. The EPA has made some strides since the '70s to regulate asbestos-containing products. Asbestos is banned, for instance, in corrugated and commercial paper. However, in the United States companies are not barred from importing and distributing many products that contain asbestos such as clothing, vinyl floor tile, and car gaskets. 

5.  Mesothelioma has a loooong latency period. Often, symptoms don’t show up until 20-50 years after the initial exposure to asbestos. By the time the cancer is detected, it’s usually very advanced. For all we know, Paul could’ve ingested a microscopic asbestos fiber as an infant, where it grew silently for years.

6.  Mesothelioma can be contracted through secondhand exposure. This occurs when a family member brings home asbestos particles on their clothing or hair. Patients can be exposed as innocent children and develop this deadly cancer decades later. Not okay in my book.

7.  The lungs aren't the only organs that can be infiltrated by meso. It can also invade the lining of the heart (pericardial meso) and the lining of the abdomen (peritoneal meso), which is what Paul has been fighting for years.

8.  Mesothelioma is an incredibly rare cancer—only 3,000 new diagnoses are made every year. (A disease can only be classified as "rare" if there are less than 200,000 cases of it per year.) Peritoneal meso makes up only 20-25% of those 3,000 cases. What can I say—I'm in love with one rare fellow.

9.  Mesothelioma is one of the least funded cancers by the National Cancer Institute.

10.  Only 8% of mesothelioma patients survive 5 years post-diagnosis. A statistic that, at one time, made my stomach drop. Paul, I am happy to report, just passed the 5-year mark this spring. Huzzah! 

If you're so inclined, feel free to share this post to help spread awareness about this stupidhead disease.