The Switch

As I sat down to write this, a tree removal service pulled up right across the street and fired up their wood chipper. Sounds about right.

I’ve had a wood chipper in my mind for the last 3 months. Except the wood chipper was in the form of 4 little words. Your cancer got worse.

I’ve lived with chronic leukemia for 2 1/2 years now. In July, I was told for the first time that the number of cancer cells in my blood had increased, not decreased. For the last 3 months I’ve had that lodged in my chest, unable to take a full breath. It wasn’t a cloud hanging over my head, the cloud was in my head and it was a hurricane. That’s right, a hurricane wood chipper.

It’s been hard to reign in the spiraling nature of all the what if’s this news created. One question led to another which led to another. I actually had to make a flowchart to organize them all. Is this medication not working anymore? Why is it not working? Am I resistant? Did the cancer mutate? What’s the plan if it’s higher again? Does it depend how much higher?

And then, there was the part of me who was trying to be all cool and nonchalant about it. “It’s probably just a blip in the road, ya know”. “It’ll go back down again in October.” It’s funny to look back on and realize that some part of me thought I should be able to take this news in stride and just brush it off. Cancer got worse, no worries man, all good here, don’t really think about it too much. What a load of crap. High expectations much?

But even if it did go back down, I still had to address my quality of life issues. I’ve kept track of my days for the last 11 months. I rate them on a scale from 1-10, 10 being the best, 1 being the worst. I haven’t had a 10 all year. The breakdown looks like this. 50% are bad, meaning less than 5. These are the days where it’s hard to do anything at all, I really struggle, crippling fatigue, brain fog, body aches, headaches etc.. 40% of the time are what I call “capable days”, meaning those side effects are still there, but they are manageable. And 10% of my days, I actually feel good. Meaning the side effects are minimal and I don’t have to push myself through them very much at all.

One of the more aggravating, but also amazing, nuances of CML is that there are currently 5 types of treatment. They’re all the same class of drug (TKI) but they all work in slightly different ways and have slightly different side effect profiles. I remember learning about The Paradox of Choice in an economics class in college, and let me ya tell, it is very real indeed. These choices leave me questioning myself for sticking with the current medication. I always wonder, especially on the bad days, “would life be better on another medication?” It haunts me knowing that maybe it doesn’t have to be this way. But it’s equally haunting to think that maybe this will be the best it gets.

My need to make this decision has been picking up steam for the last year now. The need to know has been growing with each day spent being side effected. I go over and over it in my head, analyzing all scenarios, trying to come up with how I can handle it better. But all roads comes back to this question of, is this quality of life acceptable?  So do I live with what I know? Or do I switch?

The catch to making this decision is it’s impossible to know how my body is going to respond. There is no guarantee it’s going to be better. And there’s a chance it could be worse. I’ve been paralyzed, terrified to find out that answer. I have a certain number of moves I can make in terms of treating this disease. And to spend one of those moves for it to backfire and be worse, how demoralizing.

In the last 4 meetings I’ve had with my doctor, switching medications has been the primary talking point. The options are discussed and I feel almost ready to make a decision. I build up and build up and then I decide to stay put and keep things as is. Then when I inevitably feel like shit, the process starts itself over again. Well what can I be doing better? I’m doing everything I can? Yes? Okay well maybe I should switch.   I’ve been waiting to be fully on board with the decision. While the incessant nagging of “it could be better” ate away at me inside.

Over the last 3 months I’ve reckoned with that fear of switching and it being worse. And I’m still not okay with it. But I’ve realized that I’m less okay with remaining how I am. In all of my thinking and planning about how I would feel on the new drug, I was discounting the only information that I actually did have, how I felt today. Everything I’ve read about how to make good decisions says some variation of the same thing, “Leave your emotions out of it. Don’t make kneejerk reactions. Wait till you have more information.” But sometimes all you have is how you feel. Sometimes knee jerks actually show you how you really feel. And sometimes you will never have enough information to feel like you’re making the right decision.

But not making a decision is making a decision. And it had gotten to the point where the only thing more terrifying than the unknown was staying the same.

 

Last week my doctor called with the results. My cancer got better again, the number decreased. What a relief. Oh man I was so happy to hear that news. The fear escaped me as I took my first full breath in months. But I still felt a lingering let down because I knew that the same old side effects were still waiting for me. In that moment on the phone with my doctor I made the decision to switch medications. At the time I felt 40% sure I wanted to switch, 30% sure I wanted to stay, and 30% sure I had no idea what I wanted to do. That felt good enough. There was something inside me that needed to switch. I just had to. I need something new. Even if it’s worse, I just have to know.

Doing the right thing rarely involves knowing how things will work out ahead of time. If you wait until you’re 100% certain, or even 75% certain, it’s probably too late. And there is such a thing as too late when it comes to quality of life.  Making important decisions is less about knowing the results will be favorable and more about knowing you’ll be able to handle it if they aren’t. And I don’t mean handle it as in take it in stride. I mean handle it as in knowing that new challenges are going to arise, while remembering that’s exactly what you so badly needed. Challenges arising after a difficult decision has been made is not proof that you made the wrong decision. It’s proof that you made the right one. It means you’re not restricting the essential force inside of you that needs to change. You’re going to be dragged kicking and screaming into some of the most important changes in life. You will not going willingly. But being sure is the sacrifice required for moving forward.

It’s been a weird, stressful and downright painful 3 months for me. I haven’t written any posts, not because I haven’t wanted to. I’ve been burnt out on drawing conclusions and learning lessons from “my cancer experience”. And instead of pushing through that I decided to just let myself crash and tune out for a bit.

Meaning making is a proven way to process and work through struggles, trust me I’ve read Man’s Search for Meaning twice. It’s a way to create purpose around the struggle, which can lead to better life satisfaction. Oddly enough though, actively not trying to create meaning around my cancer experience allowed me to feel the full brunt of just how bad it actually is. And that’s what ultimately pushed me to make the switch. I was listening to myself in order to respond. Not listening in order to feel. I was using my experience solely for the purpose of trying learn from it.

I noticed during this time how my reflections had morphed into an assessment. I was measuring how good my reflections were by the conclusions I was drawing from them. But that’s not reflecting, that’s assessing. Big difference. In there somewhere was my desire to prove to myself that all this time living with cancer wasn’t going completely to waste, that I was getting something out of it. And I definitely have gotten a lot out of it, and changed for the better. But when you’re always going in to it looking for something to pull out, it can start to feel like a transaction. And life’s experiences are so much more than that.

It’s so easy to subscribe to the idea that we have to make something out of our struggles. It’s deeply embedded in our identities’. That’s our story, the underdog overcoming the odds to become successful. But there’s something so ridiculous about the belief that we, as individuals, and as a society, will just continue to grow exponentially to infinity. There’s something missing from that narrative. And I think it has a lot to do with the impact that transactional view of the world has on our souls. It denies a sense of realness. Our experiences are meant to be felt, not used in service of a “better life”. This mindset makes it seem as though our life experiences are inputs into an equation. But the solution never changes. No matter how skewed the inputs are, the solution is permanently growth.

The point is not to stop reflecting on how we can change for the better, but to extricate ourselves from the need to constantly prove that our lives only have meaning when we can spin them in a positive light.  If suffering is only viewed as an opportunity for growth we completely miss how it actually makes us better people. We’re so eager to race through it and come out the other side better for it because we think that all the heavy stuff, the grief, the heartbreak, the bodily pain, the trauma, is what will crush us. But what crushes us is the requisite denial of lived experience.

It’s said that suffering is grace. And that’s the God’s honest truth. But what I tend to lose sight of is that first word, suffering. There is no grace without suffering. And it’s not suffering and then grace. Suffering IS grace. Grace doesn’t feel good. In fact, the most graceful moments of your life will probably be some of your worst. But what grace, and therefore suffering, reveals to us in those moments, is the beautiful horror that this is life too. And sometimes life just hurts.