The Physical

Many of my mornings start with a surprise; I still feel like shit. The exhaustion sets in before my feet even hit the floor. Here we go again. I peel myself out of bed and drag my shackled body to the kitchen to make my oatmeal. I need to line my stomach so I don’t puke. Then it’s time for the daily reminder of my body’s deficiency. I swallow the pill.  Don’t forget to write it down! And off we go, as the toxic substance, that I can’t touch with my hands, yet put in my body everyday, secretes it’s way through my marrow and blocks the bad cells from being made.

I’ve neglected to write about the physical side of chronic leukemia because it’s really hard to put into words. And I’ve noticed that I have a tendency, especially in my writing, to spin things in a positive light. It’s in my nature to try and find the lessons from having CML. I know that’s a good thing, but I’ve recently learned that it can also minimize the actual experience. The physical pain and struggle is my gateway to the lessons. And I think I do a disservice to myself and my readers for not completing the picture. By not describing, and accurately painting a picture of life with chronic leukemia. So that’s what this post is for.

How do you wake up tired? We all expect, subconsciously, to wake up and feel good. To be full of energy, because that’s what sleep does, it recharges us. That’s why every morning I wake up and it’s a surprise, in the worst way. I wonder if that expectation will ever change for me?

A common response I get when I tell someone how I’m feeling is, “yeah, I’m tired all the time too”. Thank you for trying to relate, seriously, I appreciate that. But it’s not the same. There’s a difference between being tired and being fatigued from cancer treatment.

You ever have the flu? When every single movement is excruciating? When lifting your head off the pillow to take a sip of water feels like a CrossFit workout? Yeah, it’s kinda like that.

You ever feel like your bones are going to fall out of your skin because your body is sagging so bad? You ever feel like sitting upright is an extreme sport? You ever tried to turn your desk chair into a bed because sitting up straight is too much of a burden? You ever crave the relief of being held by your mattress the second you get up? Yeah, it’s kinda like that.

You ever been out of breath after shaving? You ever walk outside to check the mailbox and feel like you just completed an ultra-marathon? Your legs ever tremble when standing up from the toilet? You ever have to pull yourself up the stairs using the handrail cause your legs might give out? Yeah, its kinda like that.

Your body ever ache so bad that sleep is the only thing you look forward to? You ever feel so shitty that you can’t think about anything else? Where you would give anything for an ounce of relief? You ever feel like such shit that you can’t even bring yourself to speak? You ever feel like restraining yourself from crying while someone talks at you is an accomplishment? Yeah, it’s kinda like that.

But wait, there’s more!

You know after you drink too much and your sides hurt? That constant dull ache? Yup, I can often feel my insides struggling to process the oral chemo. And then there’s the sharp abdominal pains. You ever get a pain that makes you question if everything is in working order? Yeah, the sharp pains comes around just enough to keep me on my toes.

My medication comes with a 3 page printout of all the different side effects. I saw that bone pain is one and I thought “what’s bone pain even feel like?” Well, it feels like lightening strikes through your bones. It’s this searing, white hot pain that shoots up your bones from nowhere. I’ve never been stabbed before but I imagine it being something like this.

Oh right! I almost forgot, the nausea! Nothing like feeling as though you’re going to yuke at any moment to brighten the spirit!

I’ll concede that these don’t all happen at the same time and they don’t happen every day. The nausea and bone pain have gotten better over time. But the fatigue, man, the fatigue. I forget what it’s like to have a full tank. It’s not something you can sleep off. A goodnight’s rest doesn’t translate into a day full of energy and that is super frustrating. You just have to let it run it’s course and try not to make it worse.

I’m constantly torn between bowing to my cancer while living in preservation mode, and living life on my own terms. Even the good times are spent with one eye looking forward, in fear of what I’m going to feel like tomorrow. The consequences always catch up, always. That innocence, that willful disregard of the consequences is something I so dearly miss. And then there’s the regret that comes when I do decide to stick it to my cancer and live life on my own terms. It feels good in the moment but I regularly end up kicking myself as I recover for over-exerting yet again. I’ve cut back a lot and realize that I probably need to cut back even more. Which sucks because it feels like defeat. It feels like I’m letting the CML dictate my decisions. It feels like I’m a grandpa stuck in a 25 year old’s body.

I’ll never be able to say that I’m fully cured of my cancer. I’d have to essentially get rid of my body and exchange it for a new one through a stem cell transplant to ever be fully rid of this disease. The fact that there is no end date is the most maddening aspect of CML. Even if I go into remission, I still have to stay on the medication indefinitely. If it were going to be a year or two of treatment and then back to a “normal life”, I think that would ease the psychological burden. I’d have something to hang my hat on. I’d have a light at the end of the tunnel. But chronic leukemia is not like that. So I’m forced to grapple with the questions; what if this is forever? And how the hell am I going to deal with it if it is? Will I be able to keep this up?

CML deceives every notion there is about “beating cancer”. That mindset doesn’t work for me. I have to learn to live with and welcome it. Below is the start of a Twitter thread I did a couple months ago about this whole “win/lose” mindset with cancer.

I’ve grown to hate the phrase “battling/fighting cancer”. I think we use it as a way to try and symbolize our strength and determination. But, it has dangerous implications and can cause unintended consequences for those that have it. I know it does for me.#WorldCancerDay

— Casey Mullooly (@mullooly_casey) February 4, 2019

All this from a pill and disease I’m supposed to be thankful to have? Fuck that. I’m considered medically lucky, but I’ll let you in on a secret, I haven’t felt lucky a single day in the last 15 months. Trust me, I’m fully aware that things could be much worse and they very well may get worse, there are no guarantees when it comes to cancer. And I’m fully aware that there are much harsher treatment regimens than the one I’m on. But I’m sick of using that as a way to marginalize my actual experience. Yeah things could be worse. But things could be so much better too.

I say I’m grateful and thankful for this disease because I know it’s the right thing to say. And I do feel that way sometimes, because it has taught me so much and allowed me to transform as a person. I’m still alive, so yes, I’m about as grateful as you can be for the development of the medication I’m on. But there are also days when I’m frustrated out of my skull, desperate, crying, to just feel good again, to just feel normal again. I’d trade this wisdom for my youth back in a heart beat.

The lessons usually come after these raw feelings of anger and frustration pass. But the positive spin only shows one side. It’s not fair to only write about the good stuff. I wanted to show you the other side so you can have a little better idea of where I’m coming from.

This is where I usually try to wrap up the piece in an insightful, inspiring way about how we can all do better. I don’t have much of that in me today. So cherish each and everyday you wake up with your health, because you’ll really miss it when it’s gone. Thanks for reading.