In my last post about “The Fault in Our Stars,” I made a comment about how most patients live, if not thrive after their cancers. I am deeply grateful for the readers who correctly commented that some patients also die.
There are no words to express how tragic, painful, or unjust, the death of a young person from cancer can be. I particularly appreciated these comments because they came a day after the death of one of my own, and very beloved, patients. I wrote this memoir the day he died. With his parents’ permission, I am sharing a few pieces of his story, his legacy, with you.
Daniel Mar died early this morning at the age of 20. He was one of my first patients as an independent oncologist. For that alone, I could say he will not be forgotten. Daniel was a “patient” simply because he happened to have cancer; terrible cancer that ultimately took his life. But beyond that, he was so much more. He was an advocate. A son. A brother. A devoted friend. To me, he was my muse. My teacher. And, through it all, my friend.
I met Daniel when he was diagnosed with Ewing sarcoma (a bone cancer) at the age of 19. We had just launched a study consisting of serial interviews with adolescents and young adults with newly diagnosed cancer, designed to gather their perspectives of “resilience.” Daniel enrolled, which meant we talked regularly about his experience.
From the beginning, Daniel believed strongly in “staying positive” and sharing what he had learned with others. About two months after his diagnosis, I asked him what advice he’d give to new patients. He said, “I’d just tell them ‘think of the end [of treatment], think of the positives, like what awesome thing are you gonna do to celebrate the end of this. Like, what amazing friendships or relationships have you gained so far through this. Like, the kindness that you receive is outstanding and it’s incredible…like, it’s hard. It’s hard to be happy and have cancer at the same time but I promise it’s possible cause I’m doing it right now.’”
To many, Daniel exemplified resilience. We’d ask him how he was doing and he’d respond (literally, this is how he answered that question every single time): “I’m living the dream.” Some thought it funny. Some thought it illustrative of his easy-going nature or his strength. So, I asked him once, “Why do you say that?” He replied, “It’s easier. It sort of protects them. They don’t need to know what I’m scared of, what’s hard. I’d rather just, you know, protect people. I don’t have a lot of control here, but I have control over that. If I can help other people in this situation, then why wouldn’t I?” So, I think his “living the dream” answer was really about how Daniel forever thought about others, put their needs in front of his own, and in so doing, made the rest of us feel safe.
To me, Daniel’s resilience was in his insight, his ability to find meaning and purpose from his experience, and his ability to advocate. His observations changed how I approach patient care (some of his greatest worries were around the taboo topics of sex, drugs, peer relationships and death, and he taught me that all oncologists should make themselves comfortable normalizing such things). About six months after his diagnosis, we had collected hours of interview transcripts (that boy loved to talk; not one of our interviews were less than an hour!). I was thinking about what we should (or could) teach other patients about resilience. I shared with Daniel my ideas, and he told me what he thought of them, how we should (and could) shape them into something meaningful, and what it would look like. I gave him draft information sheets for new patients (with some of these same quotes embedded) and he edited them. I shared what we thought we were learning from him and the other anonymous patients, and he reframed our impressions with the lens of his own experience.
“Why did this happen to you?” I asked him once.
“The doctors say the sarcoma that I have is just random,” he said. “It happens to…it’s like, some stupid percentage. It just happens to people and it’s crappy, but it happens. I…I don’t believe that, really. I think everything happens for a reason.”
I responded by asking, “What’s the reason?”
“I think it’s to point me in the right direction for the rest of my life…cause everyday, almost every day, I’m either in the clinic or here getting infusions and I see kids in pain. I see kids unhappy, I see kids suffering. And I hate it. And I just wanna fix it but I can’t cause I’m just, like, I’m just sitting here. But I recently got in contact with a director for the American Cancer Society, and I think I’m supposed to go into that. I want to better the lives of people in the future. And I think, like, I think that’s why. So I could see the suffering, so I could really understand, so I’d kinda know what to do.”
Daniel did work with the folks at the American Cancer Society (ACS). They even wrote a story about him. It was about surviving. A few months ago, when Daniel’s cancer recurred in his pelvis and his lungs and his prognosis was very poor I asked him what he wanted to do about the ACS story.
“They should still run it,” he said.
“As is?” I asked, “Do you want to change it?”
“No, I think it is a happier story the way it is. And that is what I want people to remember. That they can be survivors. That they can make this worth it somehow,” he said.
Daniel died surrounded by family and friends. I heard he was somehow making them laugh up until the end. He was alleviating their suffering and making them feel safe. He controlled how he died just as he controlled how he lived. For that nearly impossible feat, I will forever admire and respect him.
This morning, I took a walk in the woods and mourned my friend. In the midst of it, a song came on my iPod about honoring the ones we’ve lost. I thought about Daniel’s self-professed purpose to share what he had learned, to advocate for and inspire other patients, and to alleviate their suffering. “Thank you, Daniel,” I thought as I listened. “I hear you.”
In my “Fault” post, I commented that most pediatric and young adult cancer patients survive and have powerful, important stories to tell. I stand by that. But, for the patients who die, their families and loved ones become the survivors. And we tell their stories. To my friend Daniel Mar: I am profoundly grateful to tell a tiny part of yours.
Dr. Abby Rosenberg is the medical leader of Seattle Children’s Adolescent and Young Adult (AYA) Cancer Program. She is also a researcher in Seattle Children’s Research Institute’s Center for Clinical and Translational Research.
- Seattle Children’s Cancer and Blood Disorders Center
- Seattle Children’s Adolescent and Young Adult (AYA) Cancer Program
- The National Cancer Institute: Adolescents and Young Adults with Cancer
- AYA Cancer Care Unit