Gary W., PA

My Diagnosis

I took an early retirement from my job at 59 years old. Being empty nesters, our plan was to travel. My wife has a goal of visiting all 50 states – we’ve been to about 43 so far – and we both love National Parks, so we booked a trip out west to check off some more. Midway through that trip, two people had to drop out because they had COVID. I knew that people were contagious before they started to show symptoms or test positive, so I was aware that we might get sick too. Sure enough, when we got home, I also came down with COVID. With it, I developed a cough that felt unproductive, like there was something deep in my lungs that I needed to get out but couldn’t. I recovered from COVID, and my cough subsided for a little while, but it eventually came back. I went to my primary care physician, who listened to my lungs and told me that he didn’t like the sound of them. He sent me for a scan immediately, and a tumor was found in my lower right lobe. That kicked off a whirlwind of more testing that revealed a tumor in my other lung as well. I was diagnosed with stage 4 (IV) inoperable bilateral adenocarcinoma non-small cell lung cancer with the HER2 mutation. I had some trouble with my first care team and wasn't feeling good about their treatment plan, so I got a second opinion at Johns Hopkins Sibley Cancer Center in Washington, D.C. I met with a thoracic surgeon initially, wanting the tumors cut out of me. I was told my case was inoperable and needed to see an oncologist. From the very beginning, my oncologist took a great interest in my case and made me feel like he cared about me personally. The HER2 mutation is found in both lung cancer and breast cancer, and he actually put me on a breast cancer drug called ENHERTU.

Treatment

I’ve been taking ENHERTU (fam-trastuzumab deruxtecan-nxk) for two years now, and I’m doing well on it. My treatments are on Monday mornings, and my wife and I usually drive down to my son’s house in McLean, Va., on the Saturday or Sunday before, spend time with our family, and then go for my infusion on Monday. My treatment begins at 7:15 a.m., and we are usually on our way home by 9:30 or so. I’ve been blessed that my side effects have been minimal. I’ve been in treatment long enough now that I know that week one, I’ll feel pretty run down; week two, I’ll start to feel much better; and by week three, it’s like I don’t even have cancer. I’m able to be very active. I walk with a friend of mine for about two miles every day, and I also do a lot of our household chores like cooking, cleaning, shopping, and laundry. In these ways, being in treatment hasn’t changed my day-to-day life too much.

Cancer treatment is incredibly expensive. My wife still works, so I’m on her health insurance. When I first started, my treatments were $32,000 every three weeks. The cost has since increased to just shy of $62,000 per treatment every 21 days. Annually, that’s $1,054,000. With my wife’s insurance, we pay only a specialty care visit fee of $40 each time. I recognize how very lucky we are to have such good coverage, and we’re grateful for that. Last year, her employer, who is self-insured, made a major change with healthcare insurance coverage. Starting Jan. 1, 2025, spouses will no longer have healthcare insurance coverage. HR spoke one-on-one with my wife, and as I have no other insurance coverage option, they consider me uninsurable and will provide healthcare through 2025. I’m one of about three spouses in the company who will be provided coverage. As I’ve said before, I feel blessed again in a big way, and someone is looking out for me! It’s something you don’t think about when you’re diagnosed, but it can make a huge difference in whether and how you are able to be treated. I have an incredible support system of medically educated immediate family caregivers helping navigate my cancer survivorship.

Approaching Lung Cancer With a Positive Attitude

When I was first diagnosed, we were stunned. We truly couldn’t believe it. For several weeks, I was in some level of denial about what was going on with me. There was a lot of anxiety at first, too, because so much is uncertain. You’re always waiting on an appointment or test results, or waiting to see how a treatment will go. My hair fell out at first, but then it grew back in. I asked my doctor if it was normal to have hair grow back while you’re still in treatment, and he said, “There is no such thing as normal here. No two people are alike.” That was shocking to me at first, but in a way, it also gave me permission to have my own experience with lung cancer and not worry about what happened to other people.

After a little while, you settle into a rhythm with it all, and it begins to feel like your regular life. I’m lucky that I’m doing so well on my treatment that I very much live like a normal person. I also made a conscious decision not to be a Debbie Downer about my diagnosis. There’s no point to it. My quality of life is excellent, so what good would it do me to sit around and feel sorry for myself about something that’s out of my control? I have great energy and am very active physically and mentally. I don’t ever want to stop living and enjoying my life. At first, I was determined not to let lung cancer slow me down, but if anything, it’s accelerated me. One time, I was at the beach in New Jersey with my family and I saw a sea turtle up near the dunes who was buried in the sand. All you could see was her head sticking out. It may have been a mom who got buried while she was laying her eggs there. I watched her work and work to dig herself out of where she’d been buried, and then very slowly crawl across probably 200 feet of sand to the ocean. It may sound silly, but seeing her do that spoke to me and stuck with me. It showed me that we’re all capable of doing hard things if we don’t give up and we push forward. I had someone ask me once, “How many months did they give you?” and I said, “I hope a heck of a lot because there’s so much I still want to do before I check out.” The person didn’t know what to say after that, but it’s the truth. I’m not done living. Why would I dwell on anything else but how much I have to be grateful for?

Advice for Others Living With Lung Cancer

I will talk to anybody who will listen to share what I've learned to educate them about lung cancer. Helping others understand my situation is empowering for me and sets them, I think, somewhat at ease being around me. Two years into treatment, we feel comfortable enough with my lung cancer that we’ve ramped up our traveling and just returned from 12 days in Hawaii. Furthermore, we’re going to Alaska in August—two more states completed on the 50 states bucket list. I think the thing that people diagnosed with lung cancer really need to understand is that there is so much progress being made with the disease, and so much hope now. If I’d been diagnosed eight or 10 years ago, I’d be dead by now because the treatments didn’t exist that are available today through research now to manage this disease. I recently attended an online webinar presented by LUNGEVITY and Johns Hopkins announcing the newest clinical trial research findings at MD Anderson Cancer Center in Texas. Lung surgeries are being successfully performed on stage IV cancer patients with very positive outcomes. A similar Japanese clinical trial has duplicated those findings. Ongoing research has identified that in just two years since I was diagnosed, successful lung cancer surgery has become a reality for some qualifying cases. More research is needed. When I first met my oncologist, he told me that we have learned more about lung cancer in the past 24 months than in the previous 24 years before that. Because of this, he told me not to worry, because if current treatment ever stops working for me or if the side effects get to be too bad to tolerate, he’ll just put me on something else. People need to understand this – whatever you’re on, it’s not the only drug or treatment option. There will be another therapy or another trial to try, and this should bring us all a lot of hope that we can live very well, even with lung cancer.