“I’ve seen Jesus play with flames / In a lake of fire that I was standing in” – Sturgill Simpson, “Turtles All the Way Down“
Sturgill was singing about drugs when he saw Jesus, but to be fair, I was on copious amounts of Dilaudid when I saw him, so we’re probably even.
Aside from that, I can’t think of a more apt description – a lake that’s been set on fire by the one who’s supposed to show you mercy – of what I felt when I was diagnosed with stage four cancer six years ago today.
Six?! Six. No, really, six.
Last year, when I hit the five-year mark, I felt victorious. I had miraculously hit that 10% of metastatic kidney cancer patients that make it to five years. When my oldest daughter graduated high school a couple of weeks later, one of the first people I texted with a picture of her in her cap and gown, clutching her diploma in front of the Welcome to Las Vegas sign (a truly Only Vegas locals moment) was my oncologist.
You made today possible, Dr. V. Never in my wildest dreams did I believe I would get to be there for her today. Thank you so much from the bottom of my heart!
I’m still filled with gratitude; don’t get me wrong. Never for a moment do I take my incredible good fortune for granted. I know how lucky I am.
But in the back of my mind is always the question, the one I am so superstitious about that I am almost afraid to even type it out…
I think back to one difficult appointment with Dr. V when I was almost NED (no evidence of disease). I was feeling good at this point. Went to my appointment on my lunch break thinking, “The medicine is working, my cancer is shrinking, and this can all be in my rearview mirror soon.” No one had told me yet that cancer rips the rearview mirror permanently out of the car. I wasn’t prepared for him to map out for me how he believed I had at most three years until I had a recurrence, and that he strongly believed it would come back with a vengeance. Tears rolled down my face while Dr. V calmly explained to me where he believed it would come back, and how it would go about killing me.
An hour later, I was sitting in a media planning session where in theory, I was sitting there discussing what advertising to buy for the remainder of pool season. In my mind, however, I wasn’t absorbing a word, instead thinking, “If I only have three years left, what the hell am I doing? I’m going to spend my last days buying ads?”
Thankfully, three years have now long come and gone. I’ve also learned that I draw a perhaps unhealthy amount of purpose from my career. Truth is, I’m bored to tears if I’m not working, and I really enjoy what I do. But the question never leaves my mind – what now? Are you really living your life with purpose, not wasting one day, sucking the marrow out of your borrowed time?
I continue wading in relatively unchartered waters, using a map that no longer fits my journey. I don’t think there’s even published survival rates past five years for stage four patients, probably because the numbers are so low that they’re difficult to even trace. Or it’s just damn depressing.
It’s getting lonelier, too. The patients I first connected with in 2016 are by and large gone now. Even many patients diagnosed a few years after me that have become close friends have now passed away. I have now counseled more than a few patients from early in their diagnosis all the way through their passing. I have woken up to texts and Facebook messages with, “I’m in the hospital, and they’re recommending hospice. They’ve said there’s nothing more to do. I’m scared. What do I do?”
I don’t want to sound ungrateful. It has been an honor to help these patients, these friends. But each time I lose someone, they take a piece of me with them. I cry myself to sleep, because none of it makes sense. There are no answers as to why I got lucky – first line of treatment, NED within a year, stable complete response, are you kidding me?! – and these patients didn’t.
I feel so reckless even confessing any of this. It’s the ultimate looking a gift horse in the mouth moment. God, hear my plea that I’m grateful, alright? I don’t take it for granted, and I don’t need another reminder. I know how lucky I am when I get another batch of results that confirms I’m still in remission.
It’s just hard to not know what happens next sometimes. I know how vicious and sneaky HLRCC can be. I know I’ll probably be on a four-month scan regimen for the rest of my life because of it. I know being on Cabo for 4 and a half years likely caused organ damage aside from what we can see now, and that it combined with the repeated radiation exposure from my CT scans isn’t great. And listen, if the worst of it for me is an aggressive scan regimen and required medicine to counteract Cabo’s damage ad nauseum, then I’ll take it, obviously. I’ll swallow it down gleefully with my five pills every single morning with nary a complaint.
I just don’t want to be the outlier anymore.