“My first exposure to [mesothelioma] was through TV ads about mesothelioma lawsuits.

It [all] went over my head.

I was a student [at Iowa State] and I first met [Connie] when he was on staff here through the Industrial Educational Department, so that was our very first [time] crossing paths and I was a student pilot at the time. Many, many years [later] we reconnected and ended up getting married in 1994.

He had some of these very common symptoms. The problem [was they] were common symptoms of a lot of things and so that’s why making an accurate diagnosis is very challenging for doctors because [mesothelioma] presents like so many other common illnesses, it is easier to dismiss it as something less serious. If I could say what the very first thing was, [it] was that he was tired but again, fatigue is almost universal to every illness whether it is serious or not. I’m tired all the time, but I don’t think I’m sick.

He was naturally quite energetic, he would say things like, ‘I think I’m ready to retire,’ or ‘I feel lazy today’ or ‘I’m slowing down.’ Given his age of 75 at the time, it was not uncommon, people don’t have the same energy at 75 as they do at 30. It was not alarming, it just was something that was easily overlooked as being more potentially problematic.

The diagnostic process for [mesothelioma] is very intense because with any illness [doctors] try to rule things out. [Doctors] start with the simple test, if that’s incohesive then they try with another test.

He was very willing to fight [mesothelioma], so he was very brave and very willing to try some treatments.

The bad part of that, there aren’t any good treatments for this disease. There’s one [Food and Drug Administration] approved, it’s chemo combination of two different medicines that are typically used. Sometimes surgery can be performed, it depends on what all [the] testing shows and how far [the disease] spreads. There are two types of surgeries being practiced: one is the removal of the entire lung, it’s very radical but can be very effective for some people depending on their overall health status and other health factors in their life, not everyone is a candidate for that surgery.

He was set up for [a] clinical trial at Mayo, which involved an innovated process of using cryotherapy on those tumor areas to see if that created some type of immune response. All kinds of immunal therapy are making strides in cancer treatments right now. But as part of his prep for that, that’s when they discovered  biopsying and found the spread below his diaphragm. They actually aborted the surgical procedure and said, ‘We don’t think this is a good fit for him, we’re going to refer you to oncology,”

In this case, [the referral] did not help my husband. We ended up running out of options we looked at clinical trials all across the country, but his physical state made traveling difficult. So at that point in time there [weren’t] a lot of clinical trials [that] were good fits for him and those we looked into, he didn’t qualify for. We tried to see if there was something on the horizon he might be able to sign up for.

We ended up in hospice through Mary Greeley. We only had hospice for a day and a half, we probably didn’t get the full benefit  of what a good hospice could offer. In general, I would always encourage people to think about their own end-of-life decisions and become familiar with your local hospice providers so you know before you ever need them, what kind of services they provide. That’s a subject a lot of people don’t want to approach while they’re healthy, like a lot of things in life, we wait [until] we need them to learn about them.

In my inner circle of friends and family I try to talk about [his death], I don’t want to force it on anyone, I know some people are uncomfortable talking about death and illness. I think it’s important for people to understand that [mesothelioma] is a real illness that affects real people, it’s not some mythical disease you see on the CNN commercials.

I don’t think this disease is going away. I think social media has helped raise awareness of all illnesses, not just mesothelioma, it has become easier to [reach] larger audiences quickly. Out of all the diseases, I thought he would succumb to, it was not on my radar at all.

I’m just getting my foot into the advocacy, I didn’t want to do this too soon after he passed away, I want to have some clarity on the illness and the risk factors and research in mesothelioma,so it’s taken me a minute to learn a little bit about all of this.

I would like to make it happen to encourage all doctor’s offices to have on their patient questionnaires questions about environmental exposure [with] a sidebar being, ‘do you have any known exposure to asbestos?’ just to get the conversation started.

That’s what I’m also trying to do: coach people to donate in honor of my husband to an organization that’s fighting for better treatment and care for the disease.

With any rare disease, it’s not rare to the person who gets it. It does and it can happen to anyone. Be mindful of your exposure to asbestos, whether its a prior exposure or people thinking about remodeling their homes.

If people know that they have risk factors, they might be proactive in recognizing the symptoms of asbestos related diseases, even though they [present as] common symptoms of other diseases and conditions.”

— Lisa Kuehl