Shifting Awareness: Mesothelioma

Breast cancer awareness overshadows so completely that it bleeds right into September. You’re probably not even aware that today is Mesothelioma Awareness Day – or what mesothelioma is. Let me tell you a bit about it…

BarbaraI often think about the end of 2001 as our last days of innocence. We joined my husband John’s family for a week-long Caribbean cruise. We were a party of 14, and I have to admit I was a bit apprehensive. It was a big boat, to be sure, but a relative could be lurking behind any porthole. Then there was our active, inquisitive, knows-no-limits three-year-old son Zach who, in my mind’s eye, kept climbing up the bars for a better look at the ocean below. He was just the right size to slip through the rails. However, besides a command performance at dinner (where Zach was taught the “slide the tines of the fork through the tube” method of penne consumption by his uncle, we came and went as we pleased. That meant group shore excursions, magazines shared at the pool deck, and a command performance in the ship’s day camp Christmas play.

Within six weeks of returning home I was diagnosed with Stage II breast cancer. We received incredible support from everyone, despite the distance between Los Angeles, where we live, and Chicago, where the rest of our family are. We plowed through the six rounds of chemo and another six weeks of surgery and recovery. Zach scored a trip with cousins to San Diego, where they revealed his addiction to chocolate. By August there was nothing left but five years of tamoxifen. We shared a collective sigh of relief, as if we had all dodged a bullet.

Life went on. My son turned four, and then five. I went back to work. We were livin’ the dream, as they say. A major family celebration had us visiting Chicago almost exactly two years and a growing head of hair after I finished my treatments. It was my niece’s bat mitzvah.

That evening in June 2004, my mother-in-law complained of pain in her ribs. When she saw the doctor a few days later her pain was declared a broken rib, and bedrest and pain killers were prescribed. With no relief, she pursued other causes for the pain. Sadly, it took another few weeks to uncover the true cause – mesothelioma.

We were both overwhelmed and stunned by her diagnosis. We knew immediately it was not good news. As is so common with mesothelioma, hers was found late. By the time of her diagnosis the tumor was the size of a grapefruit and was inoperable because it was in the lining of both lungs. Living in Chicago provided excellent access to care, and she immediately found a well-known specialist and began chemotherapy. As my mother-in-law progressed through treatment we began to learn more about mesothelioma and it’s only known cause: asbestos.

Asbestos is one of those things that is too good to be true. It is a naturally occurring combination of mineral fibers that are durable, heat- and fire-resistant, and it had been put to use in countless commercial applications since the US began mining asbestos in the late 1800s. By World War II it was used as insulation, in roofing, and other building applications, as well as common consumer goods.1

Despite ancient Greek and Roman references to the correlation between asbestos and lung disease and premature death in miners, it was still hailed as a “miracle mineral” and saw an upswing of use during the Industrial Revolution. According to History of Asbestos Use, “…records have shown that many business owners who employed the use of asbestos in their facilities knew that the material was dangerous yet continued to allow its use.”2 It wasn’t until the 1970s that legislation was first introduced, and 1989 before asbestos was banned in the United States.

All the while, these microfibers were hiding within the lining of my mother-in-law’s lungs.

It is not uncommon for inhaled asbestos to take 20, even 50 years, to become cancer. While exposure had been wide-spread, cohorts such as miners, tradesmen, ship builders and construction workers had particularly high incidence levels. And perhaps even more offensive – our government failed to protect our naval and marine service members. When these workers came home, they exposed their families to the fibers that clung to their clothing. However, none of these risk factors made sense for a woman in her 60s who grew up in and then had her own well-to-do, professional family. We began to speculate. The concrete factory few miles up the road? The new tract house they built-in the 50s? The filters of her cigarettes? Attorneys had the family look through books and books of product labels, and anything that looked familiar went on the list. The lawyers would then tap the trust funds of each company, where even those that went bankrupt had been court-ordered to leave behind funds for mesothelioma patients and their survivors.

from MesotheliomaBook.com

While her disease progressed beyond treatment, I began to share her story with people in my life. The first question was almost invariably whether she was smoker. As it happens, she had been. And that might have made things worse for her. But I would then explain that she did not have lung cancer, but rather cancer in the pleura, or lining, of her lung. I’ve often wondered what motivated people to raise the “smoking issue” so readily….

When her doctor had nothing left to offer her, we scrambled for another doctor. She was set to see him, but before Thanksgiving she had taken a fall that required residential care. That weekend we spent many hours with her. Our five-year-old sat at her bedside and chattered away, holding her hand and kissing her. We hosted a 48th anniversary party, suspecting she wouldn’t see their 50th. Weeks later she was home, feeling better, but had given up on the new doctor. Hospice came home with her: the poles, the bed, the jars and jars of medications, and virtual strangers coming and going.

I spoke to her every few days. I think it helped that I was both one-step removed from her immediate family, and a cancer survivor myself. She could say the things that would be so hard for her husband and children to hear. She talked about fear and frustration. She talked about faith, in this case abandoned just when she needed it most. She talked about being ready, and not being ready, to die. And, always thinking of others first, she talked a great deal about wanting my father-in-law to find someone new. She didn’t think he was the type of man to be left alone. She was a talker anyway, but as the end of her life approached she had so much to say.

We quickly planned another trip to Chicago, but two days before we were scheduled to leave we got “the call.” She had fallen again, and been hospitalized. My sisters-in-law advised that it was time. While John drove to the airport I found him a flight, and assured him we would follow as scheduled. He drove straight to the hospital where he met his sisters, his father and his aunt, all at his mother’s bedside.

After months of insisting he note come visit her, “You came, Johnny,” were her last words to him. She seemed content to be surrounded by those who loved her so, and she quietly slipped into a coma. When we got there two days later she was still alive, receiving just enough saline in her IV to keep her medicated and pain-free. As for Zach, we carefully explained that it might look like she was asleep, but she wasn’t; that we didn’t know if she could hear us, but we hoped she could; and then we asked him if he wanted to see her. He peeked in the room and then went to find his cousins.

Another two days later, in my sister-in-law’s kitchen, we gathered the younger kids together to tell them she had died. We buried her and together we mourned. We cried, we laughed, we learned to play Jewish maj jongg, we told her stories and we ate. Quietly my sisters-in-law and I slipped away to divide her jewelry and take what we wanted of her things to remember her by. Then we laughed and cried some more.

It is coming up on ten years since she died, and it’s still hard to believe she is gone. I can conjure her laugh when I am down, and I wear red because “red is always a happy color.” We still miss her at every family gathering and certainly at every milestone.

After this many years, it’s hard to judge how well-known mesothelioma is. It is clear, however, that so many misconceptions remain. Not only are support and research very necessary, but the story of asbestos and mesothelioma is a cautionary tale. When I step back and look at what we, as a country, are willing to tolerate for the sake of convenience, I am quite frightened. Where do things like pesticide use and fracking end? How much unknown harm is being done now, even while the potential damage is known? When it comes to mesothelioma, the correlation between exposure and lung disease is ancient, and what I can’t get over, still, is that none of these deaths had to happen.

For more information, and to take action, please contact the Mesothelioma Cancer Alliance. Make your voice matter!

 

1From the National Cancer Institute (cancer.gov) Asbestos Fact Sheet.

2Mesothelioma.com

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4 Comments (+add yours?)

  1. The Accidental Amazon
    Oct 04, 2014 @ 06:08:21

    Thanks for writing this, Lori. It hurts to read, but it’s important. One of the things that goes with my job is that I see patients with all kinds of cancers, including this kind. Even when asbestos exposure does not turn into mesothelioma, it will, as you pointed out, wreak some kind of havoc on a person’s lungs sooner or later in the form of pulmonary fibrosis or some other pulmonary disease. It’s crazy that, in the U.S., new industrial products are allowed to come onto the market before anyone has determined whether they are harmful or carcinogenic. We need to be aware of that, too. xoxo, Kathi

    Reply

    • Lori
      Oct 13, 2014 @ 22:29:19

      You’re absolutely right! Asbestos wrecks havoc with the lungs. It will never cease to amaze me that the ancient Greeks knew that, but that we STILL have it an SO VERY many chemicals in our environment that do untold damage daily.

      Thanks, Kathi!

      Reply

  2. pattyalcala
    Oct 05, 2014 @ 11:30:48

    I applaud you for sharing such a heart breaking story. It is so true that breast cancer seems to ‘take over’ all other diseases when it comes to funding, awareness, even practitioner education. Thank you for sharing your personal story.

    Reply

    • Lori
      Oct 13, 2014 @ 22:27:33

      Thank you for stopping by. We still miss my mother-in-law daily, and I think she’s be thrilled to know she is still touching the lives of others!

      Reply

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