A Letter For Dan Reynolds and "It's Time"

My journey and story of battling aggressive tumors

This past summer my family and our neighbors (the Hooligans) got the privilege to attend an Imagine Dragons concert on a beautiful warm evening.

The concert - look at that mustache

My wife and oldest son are huge fans and listen to the band regularly. They love them, blast them in the car and in their earphones.

Before the concert I would have described my feelings on the band as:

“great but just not my favorite”

After the concert that stance changed dramatically to:

“Holy shit that band is great”

Imagine Dragons has many billions (yes, with a B) of streams and many platinum records, I realized why live in person. These guys are freaking rock stars and A+ musicians. In particular their lead man and creator of the group Dan Reynolds. At the show one thing was very apparent:

Dan Reynolds is in his prime - so confident, so comfortable in how he carries himself. So utterly sure that he can put on a world class performance with the world class music he creates.

I also realized that these dudes have some absolute hits, great songs. Bangers. Totally original style and delivery. And then they have some gut wrenchingly emotional and introspective pieces.

There was a moment early when Dan gave a little monologue between songs and talked about how he wrote a song, It’s Time, about a college friend of his who had cancer while they were attending BYU. He explained how the song is about how he didn’t want to ever let that friend go and lose him. He was scared to leave town or leave the hospital at night to head back to his dorm because he didn’t want it to be the last time they saw each other. He was paralyzed by the unknown and uncertain.

His friend tried to qualm those fears and anxiety by telling Dan that he is going to die, just like Dan is going to die someday and that that’s okay. He’s still going to be the person, the soul, that he is and embodied on this earth and that death is a chance to rise to the top of heaven. It’s just a new beginning, for both of them.

The song is a conversation between friends, grappling with this reality and trying to move through it together as imperfect and impermanent humans.

I didn’t know this context to the song even though I’d heard it a million times. By giving us that little nugget and setting the stage for the words and beauty that flowed through them, he gave me such a gift. Listen to these words:

“The path to heaven leads through miles of clouded hell”

I’m a visual person so when they performed the song live I was transported into that hospital room, picturing the conversation happening between the two friends. I got overwhelmed with emotion and started holding back tears, eventually I just let it out. I tried to be faced away from the rest of our friends/neighbors to not let them know I was crying. I still have that weird midwestern male ego that doesn’t want to be seen crying, vulnerable, weak.

So stupid.

I spend a lot of time thinking about cancer. How the people that get it don’t deserve it, they didn’t do anything wrong. They didn’t have a choice in the matter, not really. The miracle of biology and life that they were given betrays them.

It’s so fucking cruel. That your own body would attack itself and eventually kill itself.

My body is trying to kill itself in this way - fortunately the tumors I have just aren’t good enough at it (killing me). At first they named it PVNS or Pigmented Villonodular Synovitis, now it’s called Tenosynovial Giant Cell Tumor. It’s a very rare sarcoma tumor condition caused by a random mutation that affects my right ankle synovium and tendon sheath. I have the form (diffuse type) that will relentlessly mutate until I die or they have to amputate my leg, whichever comes first.

It’s a 1 in 4 million random genetic mutation to a specific cell type that makes those cells produce a protein that creates an enzyme that signals to the other similar cells to multiply. In typical healthy humans the cell knows when to turn it on and when to turn it off. Mine doesn’t turn off, ever. The cells just multiply, unimpeded, and don’t stop. They form massive tumors eventually (hence the “giant” in the name). They take limbs eventually if uncontrolled, but they can’t spread to the rest of my body.

In November 2019 the FDA conditionally approved a new drug called Turalio, with a black box warning (it works but it’s not necessarily safe to take without constant monitoring as it can poison the liver quickly). This funny little blue and white capsule of poison, if taken twice per day with specific little meals 12 hours apart, can degrade the cells so much that they can’t produce the protein that makes the enzyme that makes the cells multiply.

My story starts back in August of 2014. I still remember everything so clearly. That first time I played hoops and my ankle swelled up for no reason.

Then a couple weeks later when I went for a run at night and came home telling Bri something was wrong. I iced it. Poked at the swelling. I racked my brain to remember if I twisted it or stepped wrong… but had nothing. I remember thinking, because I felt so much pressure in my Achilles, that maybe I just slightly tore my Achilles.

My friend Patrick was the Orthopedic surgeon on the air base in Tokyo that we lived on. Patrick is a foot and ankle specialist, so I asked him if I could come in and take X rays and have him examine it. He obliged and got me in that morning. We went to the x-ray room chatting like friends and like nothing crazy was going on, I[ve had a million xrays of my ankle from all my hoops days.

I went to the exam room and waited. He came in the room with the X-rays. I remember the look on his face, a blank stare. The way he held the X-rays at his side, looked at me briefly and then turned and plopped them onto the little whiteboard with lights behind it was sheepish and uncomfortable.

At first it looked like a normal foot, but I could sense the unease in his voice. He grabbed the pen out of his pocket to use as a pointer. When the tip of that pen moved towards a dark splat towards the heel and he made a little circular motion around it and said the word “Tumor” is when it clicked. Like tunnel vision, everything closes in, the darkness from the perimeter gets tighter, your chest compresses, stomachs drops, whatever chemical is flying around your brain is flying like a F-15 in a dog fight.

Then he circled another dark spot. And another. He plainly told me that I have 3 golf ball sized tumors that have invaded my ankle. Worse yet, all of them appeared to be pushing into my joint space. No good. That’s what’s causing the massive swelling. Every time I step my tibia grinds into a tumor .

He says he can only see so much on an XRay and that he needs to get an MRI scheduled at the hospital in downtown Tokyo. The earliest I can get in is 3 weeks and this was about a week before Thanksgiving, 2014.

At this juncture it was impossible to know if these tumors are cancer or not. He informs me that what’s worrisome is that I only noticed the swelling and pain starting in September. To have 3 this size means they probably grew to that size very quickly, but that we should get an MRI and measure them and then wait a couple months to see what happens.

The 3 weeks to the MRI is a long ass time to sit and think about 3 large tumors. To make matters worse, we were scheduled to move back to the US, and a new home in Utah, in between when I could get my first MRI and the second one.

The first MRI confirmed the tumors. What kind, we didn’t know. A soft tissue sarcoma for sure, how aggressive or what type was undetermined.

Then we moved halfway around the globe to a new strange place in Salt Lake City and waited for a couple of Months to get that second MRI. While distracted with moving across the globe and starting over again in a new city, having a 1 year old, buying a house and starting a new role, I found a way to put the potential cancer out of my mind. Although it’s never really out of your mind when every step you take you can feel the tumors.

Every once in a while the creeping doomsday scenario would take hold - the one where maybe I had aggressive cancer that had a decent likelihood that it had spread or had the ability to spread into my bones and rest of my body. There aren’t really words that can describe those moments, your brain scrambles itself pretty fast with overwhelming surges of fear and anger and helplessness.

The 2nd MRI showed that the tumors grew even more. The largest one now nearly 4 cm’s by 6cm’s, towards the back of my heel and pushing back into my Achilles, wrapping itself around and entangling my nerve bundle. Not good news.

Two more weeks.

Biopsy time - the moment of truth. It was time to sample some cells and determine for real what these cells were. This was a delicate procedure to perform because my oncology team was concerned with the prospect of the cells “spilling out” from the tumors and giving them an opportunity to move to other tissues or into my bone marrow, since the the tumors were diffused and in the joint space.

I went to the hospital early in the morning on a Friday. They put my foot in this live imaging rig and blanketed my body in lead blankets. The surgeon had on an entire lead coat and outfit as well. I was trusting this random persons steady hands to be as precise with a giant needle going into my ankle joint as possible, it’s weird how much trust we put in those people in those moments.

One little snip and a verification under a microscope that the cell sample was good and that was it. They would call later that day with the results after the oncology team had a look at it and could verify.

My mom had flown out to stay with us while this was happening and to help out. I don’t remember what happened the rest of the day other than I remember exactly where I was when the call came. My mom accompanied Bri, Otto and myself to Leatherby’s Ice Cream on North Temple Rd, a simple and pretty old school ice cream place. We were sitting at the table in the northeast corner by the window nervously eating ice cream and pretending like everything was normal, but the nervous energy pervaded the table.

My cell phone rang and the caller ID said “Intermountain Hospital,” I stood up from the table and started walking away as I answered the call. Dr. Miles, my oncologist was the one who addressed me.

“Hey Andrew - good news. The tumors are PVNS - they aren’t cancerous or metastatic. They are localized to the ankle tissue. They are large and causing damage though to the joint, we need to take them out asap”.

Phew. What a relief. The emotion wasn’t joy or happiness though, it was much more complicated than that. It was more a release of nervous energy. An unloading.

I think I smiled, gave my family a thumbs up and said something along the lines of “It’s not cancer”.

The surgery was a mess and partly ruined my ankle/foot forever as 80% of my nerve bundle and tendon sheath was removed, but I could walk normally again. My doctors gave me a 50/50 chance that the tumors would return and are the bad version of this condition.

Me before my excision surgery

Turns out I had the bad version. The tumors continue to grow and come back. 10 years on and I’m still a “cancer patient”. Those 10 years have been filled with frustration and anger and joy and complications and all sorts of other stuff. Part of that stuff is my now ability to take those little blue and white pills and shrink the tumors.

I’m thinking and writing about this today because tomorrow I start taking those pills again as I cycle back on them. It’s weird to ingest poison into your body willingly twice a day. It comes with all sorts of weird consequences and side affects - one being that my hair and skin turn white/translucent/void of color and pigment.

In about 6 weeks I’ll look like this again ☝️

Whenever I’m reminded of my tumors, like this week, I listen to “It’s Time” a lot. It a great reminder of the emotions and journey I’ve been on. It’s always amazing to me how music and great art can do that - it can permeate your psyche and provide solace in hard moments. It’s a real testament to a great creator, someone like Dan Reynolds and Imagine Dragons, if they can create something that can do this to our minds.

I believe it can only happen when you truly and deeply examine the things emotions and feelings that are happening directly to you. When you can pull that out of yourself and communicate it in and through the art. The success of the art is then in its success to resonate with as many people as possible.

If that’s the measure of success than those Billions of streams of Imagine Dragons songs means they’ve succeeded at an extraordinary level that most creators can never even dream of reaching.

I’m so grateful that I got to see the band live and watch Dan just rip up the stage for a couple hours. But I’m most grateful for that little 30 seconds of context that connected and resonated deeply in my soul.

With love and deep appreciation,

Andrew