As told to Taylor Novak by Rhonda Meckstroth
Lung cancer was never on our radar.
The majority of the public health education on lung cancer is based on whether or not you have a tobacco history. Jeff does not have a tobacco history. As a firefighter, Jeff also had to have an annual physical as well and that was something we kept up with after his retirement. We go in one fall day, and his lab work is perfectly fine, perfectly healthy—everything looks great. We’re about ready to leave and the doctor just casually mentions, ‘Is there anything else that we haven’t covered? Anything else that you want to discuss?’ And—this isn’t even something he and I have discussed—Jeff randomly brings up the fact that he has a lingering non-productive cough.
We live in a rural community, but the physician happens to have his office in the small hospital, so he sent Jeff to get a chest X-ray. The X-ray showed that there was a nodule on the lung. None of us were thinking, ‘Wow, we should probably follow up on this immediately because this could be lung cancer.’ The decision was made at that time that we could wait until after fall harvest because Jeff, as a full-time farmer, was very busy. We’re talking probably a month or so later that we actually went back in for additional tests. And that’s what led to the non-small cell lung cancer diagnosis.
Not only through Jeff and I’s experience, but through all of my advocacy work and all the different lung cancer families that I’ve talked to, I’ve learned it’s a matter of luck in terms of whether you happen to live in an area where you have access to medical teams that have been trained, advised and educated and regularly know how to diagnose and treat lung cancer. Less than 50 percent of all those diagnosed with non-small cell lung cancer even receive comprehensive genomic testing.
I can get really emotional just thinking about that because that comprehensive genomic testing is the only reason that Jeff and I have been able to have six years together since his diagnosis. That’s a significant amount of time and memories, and it’s devastating to think of how many families aren’t getting that same opportunity. And it was all just a matter of sheer dumb luck.
We decided we were done thinking about death. We were going to start focusing on living.
Comprehensive genomic testing is an amazing tool and advancement. It’s something that’s been in place for a long time and yet it’s still not being utilized. I think, ‘What is the purpose of having all these advancements and testing if we don’t even have any educational process?’
We’ve been dealing with this for six years and to know that those percentages haven’t gotten any better—there’s just so many missed opportunities. Jeff would have been gone in months had we not had that genomic profiling testing because it found that Jeff had a treatable mutation driving his cancer and there is an oral chemotherapy available.
I work in government and I have a research background. It’s like everything inside of me was like, ‘I need to learn as much as I can about Jeff’s diagnosis.’ I happened to come across somebody mentioning a Facebook support group. That’s when I was able to connect with people that were able to help me learn fairly quickly. I could talk with them and learn about their experiences. They asked me whether or not Jeff had had a brain MRI, because lung cancer loves to travel to the brain.
I go back to our doctor, who has never treated anyone like Jeff, and I tell him, ‘We need a brain MRI.’ And he thinks I’m insane because Jeff doesn’t have any symptoms. But the day that Jeff had his next CAT scan on his chest, the office called us that night to come to the office first thing the next morning. They said that they were able to see a tumor in Jeff’s brain on the CAT chest scan, and they now needed a brain MRI. And that was the last day that we saw that doctor.
After that, we recognized the importance of not only a second opinion but of having somebody who treats the kind of cancer that your loved one has—sees it on a regular basis, researches it, stays up to date with proper testing treatment and clinical trials.
There’s been two times in six years that the genomic profiling made a significant difference. We didn’t have to guess or wonder about drugs or trials. We knew what he needed.
It allows you to be able to focus on living. Jeff’s able to still do what he loves. A lot of times when you have a cancer diagnosis, it’s like you lose a part of yourself. So, the fact that Jeff had that genomic testing and his results from it said he can be on this therapy and still be a productive person and a farmer was worth its weight in gold.
In that first year or so, mentally Jeff and I’s whole viewpoint was about death. You go see an attorney. You get a will in place. We sold our boat. Our whole life was about processing and thinking about death. Two years after his diagnosis, we decided we were done thinking about death. We were going to start focusing on living. The most significant thing that Jeff and I did was that mental switch from being sad and thinking about death to truly living, planning, being normal.
Cancer is something we can’t control. But we can control today. And we’re gonna be grateful. We’ve lost things. But we still have things. We have to find that gratitude and that joy and what we still have, and we have to live and stop not making memories and moments. Just being able to get to that point of acceptance really works.
Just the other night, I told Jeff, ‘Next year is a big year for us. We’re married 25 years. I’m going to retire next July.’ Then I got emotional and he asked, ‘What’s the matter?’ And I’m like, ‘I love the fact that I can say ‘next year.’’
Jeff’s first targeted therapy was in December of 2015 and our anniversary is on Valentine’s Day. We decided we were going to go away somewhere. I planned this trip for us to go to Florida to the beach, thinking this was gonna be our last anniversary together. That whole trip we were very somber and there wasn’t a lot that we said. I made him walk down to the beach and I drew this big heart in the sand, and I wrote the year. In my mind as I’m doing it, I’m thinking this will be a photo—the last photo that I have from an anniversary of ours. That was in 2016. Now I have taken him back there in 2017, 2018, 2019, 2020 and 2021. I have a whole collection of beach photos now. And, late last year, we actually bought a second home in Florida. It goes back to that message of never stop living, planning and being as normal as you can be, right? Because it’s the only way to survive it.
Rhonda Meckstroth is a lung cancer advocate, board member for The White Ribbon Project, public speaker for Lung Cancer Advocacy, project leader for the Biden Cancer Initiative and patient advocate committee member for Pfizer.
