I Have Stage IV Lung Cancer

The first post on this site went up in April 2013. I said I'd use it for photography, filmmaking, and blogging personally about anything I want. I never figured "anything I want" would turn out to be this.

I'm 54. I live in Oneonta, New York, with my wife Charlotte. We have 2 grown sons, Devin and Dillon, and 2 grandkids, Evelynn and Maximus.

And I just found out I have stage IV lung cancer.

It's non-small cell, adenocarcinoma, starting in my left lung. It's in the lymph nodes in my chest and 4 spots in my bones.

It isn't curable. Treatment is about slowing it down and buying time. My oncologist said someone with my cancer has a median of about 8 to 12 months left to live. A median is the middle of the group, not a date on my calendar. Half the people in that group live longer. For someone with my genetics, the best study I could find put the odds of still being alive 5 years later at around 1 in 20. And those were healthier patients than me. With my heart and my kidneys, I figure my real odds are a lot lower.

Let me back up.

The cancer showed up on a lung cancer screening CT on July 7. When I went in for that scan, I was short of breath and had some chest pain. Once the scan was done, they sent me to the ER. I was in AFib. They scheduled a heart cath, and it found a 70% blockage in my left main artery. The one they call the widowmaker.

I've felt terrible for years. Fatigue that never let up, and nobody could tell me why. We kept looking at my heart, and nothing turned up until this cath. Now we're not sure what it was. Could have been the heart. Could have been my kidneys, which haven't been working right for a while either. Could have been my diabetes, which is hard on both of those. Could have been the cancer at some point along the way. Probably some mix of all of it.

The plan was a double bypass on September 11. I pushed it to October 9. I know that sounds crazy. I'm the director of the American Legion Riders here, and our Legacy Run was September 11 and 12. I was also co-chair for The Wall That Heals, coming to Neahwa Park in Oneonta at the end of the month. Add in other Riders charity events, work, and everything else I had going on. I needed to see those through. I didn't want to let anybody down, and I wanted to keep things as normal as I could. I also needed a little time to process everything, and I wanted a second opinion on my heart. That's what I did with that month.

The PET scan in August is where it got real. Just not right away. I read "may have spread" and stopped there. I gave my sons the short version, and a few days later I had to go back and tell them it was more than that. I hadn't really taken it in myself.

When I did, I'd catch myself thinking about things down the road like I always have, then stop and tell myself, well, there is no future. I started trying to figure out how to leave Charlotte in the best shape I could financially. One of the first things I started asking myself was how to explain dying to a 5-year-old and a 3-year-old when the time comes.

I'd actually put it into words for myself way back, right after that first CT scan. It's still true.

"I'm not afraid of dying. I'm afraid to leave."

Dying itself doesn't scare me. What scares me is leaving Charlotte, the boys, and the grandkids. Not being there for them, and missing everything that comes next in their lives.

Getting it confirmed took some pushing. I spent days on the phone trying to get a biopsy on the calendar. It finally happened September 4. A few days later it came back as cancer.

Every step of this took something away. Back after that first CT scan, the doctors said if it was just in my lung, they could cut it out. I let myself think I might be fine.

Then the PET scan showed it in my bones. Stage IV. Surgery off the table. So the hope moved to the genetic testing. Some lung cancers have a mutation a daily pill can go after, and people with those can get years. I was hoping for 3 or 4.

Mine didn't have one of those. It has mutations in 2 genes called STK11 and NFE2L2, which make it harder to treat, and it's PD-L1 negative, which means immunotherapy has less to work with.

I'd already seen numbers like that in my own research. But on September 28, Charlotte and I sat with my oncologist and heard it from a doctor for the first time. 8 to 12 months left to live. We already knew. Hearing a doctor confirm it was something else. It was surreal. September 28 is Charlotte's birthday. It's also our wedding anniversary.

As we sat in that doctor's office, I watched the blood drain out of her face. It was like her soul left her body. I'd been getting bad news about myself all summer. Watching it become real for her was worse. When we walked out of that appointment, we both completely broke down.

Going from "maybe they can cut it out" to 3 or 4 years was bad enough. But 3 or 4 years was enough time to get things in order for my family and the business, and to finish what I wanted to get done. 8 to 12 months isn't. That devastated me. Less time with my family. Less time to launch all the new things we've been building at work. Less time for everything.

That changed the heart plan too. At my second opinion at St. Peter's in Albany, the doctors agreed open heart surgery was a lot to put me through. A bypass means opening the chest and 2 to 3 months of recovery, and chemo can't start until that heals. That would have pushed my cancer treatment to late November. When you might only have 8 to 12 months left to live, I didn't want to spend 2 or 3 of them recovering from surgery while the cancer went untreated. So they went with a stent. It's a risky procedure, but it keeps me on my feet and gets me to cancer treatment sooner. I had it done October 7 at St. Peter's. I've got another PET scan and an oncology visit October 20 and 21. Treatment starts after that.

Since then I've read every report all the way through. I've learned more about my own cancer than I ever wanted to know. I walk into appointments with my own research and my own questions. When I went looking for someone in my position who just said plainly what this is like, I didn't find much. Nothing about the fear. Nothing about what it does to a marriage. Nothing about making medical decisions with a family and a business depending on you, or how you're supposed to process any of it.

So I'm going to write what I wish someone had written for me.

Next I'm going back to the beginning, to the CT scan I put off 3 or 4 times.

I'm writing this for 2 reasons. The first is my friends and family. This is how you'll know what's going on without having to ask. The second is anyone going through something like this. If that's you, I hope my experiences help you in some way.

I'll keep writing as long as I can.