Real Cost of Cancer

When one hears the word “mesothelioma,” everyone immediately thinks of the commercials on TV: “If you or a loved one has been diagnosed with mesothelioma, a deadly cancer caused by asbestos exposure… “ and then they think everyone who gets this cancer is automatically wealthy because of a lawsuit. Well, I’m here to set that record straight.

What Is the Cost of Mesothelioma?

Let’s start with the basics. Mesothelioma is almost always caused by asbestos exposure. This exposure usually takes place in a work environment, or in my case, secondhand exposure through the work clothes of a parent. My dad worked with asbestos and would come home covered in this fine, gray dust. His work coat was crusted with it. Most of the work my dad did was drywall sanding and cleanup. The joint compound my dad used contained asbestos. Almost 30 years later, I was diagnosed.

Mesothelioma has an incredibly long latency period, anywhere from 10 – 50 years, and the asbestos companies knew this as early as the early 1900s. Of course, asbestos is big business. Although asbestos is banned in over 50 countries, the U.S. is not one of them. We import over 1,060 metric tons of asbestos – that is, over 2.3. million pounds. Based on current trends, US asbestos consumption will most likely remain at the 1,000-ton level.

Where is all this asbestos being used, you ask? Commercial building materials, brake pads, and insulation, just to name a few products.

The USGS says the chlor-alkali industry – a segment of the chemical industry that makes chlorine and a caustic soda called sodium hydroxide – accounted for about 57 percent of domestic asbestos consumption in 2012. Forty-one percent of the imported asbestos went into roofing products and the rest into “unknown applications.”

This, to me is terrifying. As a victim of asbestos, and being involved with the mesothelioma community for the last 10 years, I have seen first hand the death and devastation wrought by this seemingly beneficial mineral. The World Health Organization estimates that over 100,000 people die each year from asbestos-related disease.

What makes me so angry is that they are all preventable.

Facing the Costs of Cancer

That is basically what an asbestos litigation trial boils down to. I can’t speak for the literally thousands of other victims, but let me give you a rundown of my experience.

Before I got sick, I was part owner in a $3.5 million salon company. I made over $80,000 a year working behind the chair, doing what I loved most: Making people look and feel their best. I loved my career and often joked that in order to get rid of me, they would have to pry my shears out of my cold, dead hands. I had a great clientele, most were people I considered good friends and some like family.

The time seemed right to start a family. I was established in my career, so that I felt confident enough that taking time off to have a baby would not have any negative impact on my books, and I was prepared to work a more flexible schedule. Things were going really well, with one exception. After Lily was born, I felt awful. I knew that being a new mom would be exhausting but I was beyond tired. Then there was the fever, the weight loss, the night sweats, and finally the heaviness in my chest that suggested more was going on than meets the eye.

After weeks of testing, we had our answer. Malignant pleural mesothelioma. Never in a million years would I dream that I would be fighting for my life when my baby was just 3½ months old.

My husband and I had some very hard decisions to make. We had to take Lily’s needs and well-being into consideration every step of the way. The thought of not being here to raise my baby broke my heart and was the driving factor in many of our choices.

Mesothelioma treatment is not only aggressive, it’s expensive. There are not many doctors that specialize in mesothelioma, and when you do find one, most often you have to travel to get to them. In my case, my specialist was in Boston at the time, at Brigham and Women’s Hospital. That meant flying across the country from Minnesota to Massachusetts. As you know, plane tickets are not cheap, and faced with the prospect of flying back and forth to Boston was daunting.

I tried to find alternatives and found out about a couple of organizations that offer flights to cancer patients seeking treatment in other cities – Angel Flight, and Air Charity Network are just a couple that offer this service. Although the program didn’t work for me, I know many other patients who have benefited by their services. Traveling for medical appointments is a major investment. Not only do you have flights, but also lodging, food, and transportation – all before the actual doctors’ appointments.

We were very fortunate that we didn’t have much debt when I was diagnosed. We were faced with the very real possibility of losing our home, our vehicles – nothing was off limits. Somehow, we made it through.

So, What Is Your Life Worth?

Just how much was my lung worth? By the time I was 40 years old, I racked up close to a million dollars in medical bills and associated expenses. I had to quit my job and sell my portion of the business. My new full-time job was fighting cancer.

According to The American Institute of Cancer Research, each year cancer costs the world more money than any other disease. My surgery alone was $250,000; the hospital stay, another $380,000. Chemotherapy was $25,000 per session – with four sessions, that totaled $100,000. Radiation was another $45,000 added to the bill.

This doesn’t include all the other expenses, labs, medication, blood transfusions, all the complications that go along with cancer treatment. I thank God every day I had insurance. Insurance that I was able to keep because of COBRA laws, since I no longer had a job, and cost me over $800 a month.

There are ways to help manage expenses, such as signing up for frequent flier programs and hotel loyalty programs. Some medical centers have homes that patients can stay in for a much cheaper rate than a hotel. In Boston, for example, there is the Thornton House at Brigham and Women’s where patients and their caregiver can stay while they are there getting treated. Most hospitals and mesothelioma centers have a program coordinator who can help with finding lodging. The Mesothelioma Applied Research Foundation also offers financial help to people who qualify and are seeking treatment away from their home.

Discovering the Incalculable Costs

But what about all the intangible costs?

I missed my daughter’s entire sixth month of life. I was either sick, or recovering from treatment for basically the first two years of her life. There are huge gaps in my memory from that time. Those are moments I will never get back. These are things you can’t put a price on.

The mental stress for my family, my parents, who took over parenting for Lily while I was in Boston, and the costs they incurred for her care over the three months she lived there, were never even taken into consideration. No one thinks of these things when they think about the cost of cancer.

The bills were piling up, so my husband had to return home, alone, and leave me in Boston, under the care of my sister, who had taken three weeks off work to care for me while I recovered. All of her expenses came out of her pocket; she never got reimbursed for anything.

I was lucky. I had friends and family who stepped in and held fundraisers for us to help with medical and living expenses. Without that help, we would have lost everything.

10 years later people assume everything is just great, but the expenses are still there. My surgeon moved from Boston to Houston, so I still have to travel every six months for follow-up appointments. I have to pay for airfare and lodging out of my own pocket. I will always have breathing issues, living with just one lung. I have fatigue related to treatment, and recently I was diagnosed with PTSD as a result of the cancer diagnosis and subsequent treatments. Through help from a good therapist, support from other meso patients, friends and family, I am better equipped to handle the anxiety and PTSD. So there is much more to the cost of a mesothelioma diagnosis than what is on paper.

Like many other asbestos victims, I hired a reputable law firm to represent me, and we were able to settle our suit. Many people wrongly assumed that this makes everything okay. No amount of money can ever replace all I lost.

The first two years of Lily’s life, my career, my health and my lung. My life is irrevocably changed since that day in November 2005.

I’ve worked hard to make my life what it is today, but the innocence is lost, the uncertainty of life is never far from my thoughts. The fact that things can, and do, change in an instant is something I’m intimately familiar with.

Asbestos robbed me and thousands upon thousands of other innocent people of that life we dreamed of – and for what? Corporate greed. Money. No product should be used that has been known for decades that it kills people. There are other cost-effective substitutes on the market that don’t endanger the lives of people working with or around it.

There is no known safe level of exposure to asbestos, and as long as it is still legal and lethal in the US, I will continue my efforts to change the laws around using this deadly mineral, working toward a ban.