For many people, a pancreatic cancer diagnosis is a death sentence. That’s exactly what Cleveland native Dan McNamee thought when he got that terrible news on June 30, 2020.
Fearing his sons, just 4 years and 9 months old at the time, would grow up without him, McNamee set out to write something to remember him by.
But what began as a series of letters to his sons became much more. His book, “Everything That Makes Me Happy Makes Me Sad – Fun Life Tips from Life’s Abyss,” touches on his mother’s love and support through the years, finding happiness in family and friends, the pros and cons of money in the American medical system, and how people deal with the inevitability of death.
Glenn Forbes: It's the Sound of Ideas from Ideastream Public Media. I'm Glenn Forbes. Thanks so much for spending this hour with us. Pancreatic cancer has a five-year survival rate of only about 13%. So when Cleveland native Dan McNamee was diagnosed back in 2020, he didn't have much hope. He started to compile his thoughts for his family and started with the line, "I am probably dead as you are reading this." Ideastream's Stephen Langel sat down with author Dan McNamee about his book, "Everything That Makes Me Happy Makes Me Sad: Fun Life Tips from Life's Abyss," who is very much alive, all about his new perspective on life.
Dan McNamee: So, writing it at the time, I certainly wrote that sentence through tears. There are a number of sections in the book that I wrote genuinely with tears streaming down my face. There was that section. There's a section of when I do two medical trials. The second medical trial was particularly difficult and that physically was incredibly daunting and I just cried a lot as I was writing and there is a therapeutic element to writing the book. How I came to that sentence was really the idea of the book. This book was for my sons, and as they would be reading it, this would be, you know, they were nine months old and four years old at the time. If they're reading it 15 years later, I was almost certainly not going to be around. And it's a striking first sentence, I think, but it came to me very quickly, and it really encapsulated what I was trying to do with the book. That said, even in the paragraphs that follow, there is some humor in it, because I did want this book, again, to be as much of me as it possibly could, and that seriousness of what I was facing was forefront. But the book is also about trying to make sense of life and trying to find joy, and that's really what I wanted to get across to my sons.
Stephen Langel: And I'm looking back on it now, have you changed your perspective at all in terms of that line?
Dan McNamee: Means to when I wrote it, the first person who read it was my wife and I didn't give her any heads up as to what the context was like. I handed her a very rough draft of the first chapter, and she read that, and she was very angry with me. And so I would change that. I would give her a little bit more of a heads up before I let her read that first sentence. But no, I wouldn't change anything. And having survived something that I wasn't supposed to survive, I'm trying to forget some of the most painful elements, some of most painful lessons that I learned, some of those things that I really sat in the deep darkness with the chemotherapy sort of coursing through my body, and that you're just very, very fragile and very, very alone and operating and living with that in the forefront of your mind is impossible. Living in an engaged way in life, in society, with your family, and finding joy and peace and happiness where and when you can. It's almost impossible if that's at the forefront of your mind. So in the one sense, my mind is shaving off, sanding off those rough edges as it goes because I think that you just can't operate in that way. So it's forgetting that. But there are things that I need to remember. Life is fragile. You do have to take advantage of the moments that you're alive by being alive and reminding yourself that this is finite and fragile, I think is a good thing to do if you can use that in a positive sense, not just be terrified of it.
Stephen Langel: I was hoping you could speak to the example that your mother set and the sort of the strength that provided you.
Dan McNamee: So, my mother is the reason I'm here today in so many respects. My mother, she's the foundation upon which I was able to build my life. I have two brothers and a sister and they would say the same thing. My mother was a school teacher before I was born and then she had us four and when I was about five years old, she became the first female firefighter in Northern Ohio or Northeastern Ohio, I'm not really sure. I usually just say Ohio because it sounds better and nobody's gonna fact check me on it. So she became the first female firefighter in let's just say, Ohio. And she provided the love and support that was foundational in every element and the idea of just perseverance. You just have to keep moving forward. It's not that you have to be impenetrable to pain and sadness, but you have to keep move forward, and you have to keep movement forward for those people who are in your life. And I knew that I needed to keep moving forward for my mother. I knew I needed keep moving forward for two brothers, and my sister, and my extended family, and I knew I had no choice but to get up out of bed and move forward for my two sons and for my wife. These were people I chose to make my life with. They gave me so much and it was incumbent upon me. When I was just post-chemo and I was really struggling, I had a 4-year-old and a 1-year old and they wanna play. They wanna wrestle with Dad. They wanna go out on walks. They just wanna play, they want you to be there. And that gave me reason to get out of bed. It gave me fuel to get out of bed. My wife's support, where she was with me every day, whether I was high or low, met me where I was. And I wanted to be there to give her a hug, to help her go through this incredibly difficult time as well. So they were fundamental. Every person in my life, it was just another string holding me down to earth, holding me together in my light.
Stephen Langel: What lessons do you think your sons can take from the book now, given your recovery from this?
Dan McNamee: Terrible disease. So I think it's going to be a while until I allow them to read it. They're both still marked by how sick I was for how long I was sick. So I would like them to read it when they're teenagers. I think especially around that age it helps give some perspective about how important family and friends are and how the point to me of life is we're here to be happy. That sounds trite, and it is trite. But the way to be happy is to spend time with family and friends and people you love. And I think if they can be reminded of that, particularly in their teenage years as they're growing up, that would be ideal for me.
Stephen Langel: One of the points you made earlier on in the book was about this idea of the U.S. versus Europe when it came to research and availability of medication. I was just hoping you could give me more of your thoughts on the power of money in medical research, how that made your chances of survival greater here in America because of the power.
Dan McNamee: So I was diagnosed in Paris, and the first standard treatment that I received would have been exactly the same, whether I stayed in Paris or whether I came back to Cleveland. I ended up coming back to Cleveland just because I had such deep family ties here. And luckily, I had an insurance policy that allowed me to either get treated in France or in the United States. That genuinely saved my life. That random piece of paper that I signed and paid for before I got sick saved my life in a way that I couldn't have imagined because it allowed me to get treatment in the United States. So while the standard treatment, chemo, is going to be exactly the same in France and the United states, moving back to the United States, this is where the future of cancer research is happening. This is where there are trials going on in Europe. There is great progress being made in Europe. But there are many more trials, and many more well-funded trials in the United States. And I think it's in the eternal conversation in the Unites States about what is good and bad about our health care system. There is much good and much bad, and it is desperately unequal. But people don't always realize the progress that is being made in our medical system. We are literally curing cancer. We're literally curing HIV and AIDS, and that is happening because of the amount of money that gets dumped into these medical trials. And the reason that money gets dumped into the medical trials is, for better or worse, once they come up with a drug that works, they can charge and absorb it in sums for it. And that is problematic for people who don't have insurance and who can't afford it. It's deeply problematic, it's deeply unequal, it's deeply unfair, but it does create new opportunities that eventually become standard of care. The first medical trial I did was an immunotherapy infusion where it gets the immune system kind of ginned up and extra active so that it can identify and kill the cancerous cells. And I was also taking the PARP inhibitor. That was a pill that would prevent the cancerous cells from repairing themselves so that the immune system could go in and kill the cancer cells. I think the pills, if I had to buy it myself, it was gonna be like $16- or $18,000 a month. That's unaffordable. Very few people in America can afford that unless you have insurance. I was lucky enough to have insurance, but the tumors that were in my body shrunk to zero. So pancreatic cancer is one of the most deadly cancers. We have that treatment, which is a medical trial, shrunk my tumors down to zero. If not for that trial, I would have gone through chemo, the tumors would have shrunk, they would have come back, I would've gone through chemotherapy, and eventually, chemo would have stopped working and I would probably be dead today. That trial, as expensive and outrageous as those costs are, saved my life, and eventually it will save other lives as well. And eventually those drug costs do come down and they do become more affordable. So we just have to take into account that there are positives to some of the most outlandish parts of our medical system. We are curing cancer, we are curing things like HIV and AIDS, and I often say that if you're in the United States and you're lucky enough to have the right insurance, in the medical system you're invited to live in the future. And I was invited and able to live in the future and it saved my life. Thank you.
Stephen Langel: Interesting points you'd brought up in the book had to do with how people deal with the prospect we all have to deal with, which is that everyone dies and that people either look for meaning in their life to believe they'll live forever or they distract themselves from the fact that they're one day going to die. I was hoping you could speak to this realization you had about the two ways people deal what this fact.
Dan McNamee: It's impossible for our brain to live with the knowledge that we will die and it's going to be much sooner than any of us want. And that is terrifying. And it renders everything a shade or two darker. And it makes joy more difficult to find and happiness more fleeting. And so we just ignore it. We do our best, we watch sports, we exercise. We read books, we look at our phones, we just ignore it. The quiet mind terrifies us because at the foundation of it is our anxiety about our own death. Distraction is key in that. Or we pretend like we're gonna live forever. We're going to build a building, we're going write a book, we're making a song, we're leaving some legacy that is forever lasting. That... even though we know we physically won't be there, we will exist because people will know the great thing that we did. And I see the irony because obviously I wrote a book and I'm talking about it. So it's not like I've somehow figured out how to deal with these things, but we also have to be realistic about how unlikely any of that really is, you know. I live in Paris and I remember one day I was riding my bike along the left bank in Paris, and I stopped at this giant statue. It was probably five meters by three meters with this giant statue of a guy sitting reading a book. And I stopped and I looked at the name and I'm like, this is a giant statue. I have no idea who this person is. And I've lived in this city for a long time, and I bet you... Most of the French people who walked by that statue never looked at it and didn't know who he was either. And so this person who is so famous, so influential that they made a giant statue in one of the prettiest cities in the world. People walk right by it as if it doesn't matter. We can pretend like we're gonna live forever by the deeds that we do or the accomplishments. I'm trying to choose to live forever by the relationships that I build with my family and friends and my children and maybe I will leave something in my children that they will leave in their children. To me, that's the only part that actually sustains.
Stephen Langel: Building on that, you had spoken at the end of the book about your desire to build a meaningful life moving forward. I was hoping you could speak about the meaningful life you're planning to create.
Dan McNamee: It's hard. At the one hand, I want to remember what I've learned, and at the other end, I would prefer to be blissfully ignorant of it. Learning how fragile life is and the anxiety that produces. It's very heavy to carry every day. And there's lots of days when I just want to put it down and I want to ignore it again. I don't think it's possible for me to ignore what happened. I don't think the fear will ever truly go away. So I need to figure out a way to live with it. I didn't fight along the bottom of life for so long to stay alive in order to live scared and unhappy. I fought to stay alive so I could hug my children, hug my mother, hug my wife, hug my siblings, find joy and happiness. And so the foundation of the life that I want to build is already there, it's in those people. It's in the moments that I get to spend with them and that amount of time when I can find some peace, I can those moments of joy. That voice that's in the back of my head reminding me I have another CT scan in five months and it's probably gonna be OK, that scan, but we don't know. That voice in the back of head, I hope it continues to get quieter and I hope I am able to remember those parts that put in perspective how important it is to find joy and peace, and I hope that I build a life where I'm just capable of spending as much time with my family and friends as I possibly can, because that's where the joy is.
