How does one describe the type of fatigue they feel after three of four rounds of chemo? It is hard to articulate. Newborn baby tired has nothing on this. Chemo tired is different. Despite sleeping a lot- cat napping throughout the day, moving between couch, bed and chair and then sleeping for hours at night, I wake up just as damn tired as I was to begin with. It feels like it exists at a cellular level making it hard to remember what I was saying or the most menial tasks overwhelming. And like most of this experience, it’s humbling.
I was warned that chemo has a cumulative effect and it has delivered on that promise. The first 5 days or so after chemo are the most challenging. Almost from the moment I leave the hospital parking lot I have lost what little appetite I had to begin with. Replacing it is an undercurrent of nausea and a feeling of glue in my mouth. Hardly anything sounds good to eat-with the exception of sweets and even those can be hard to choke down. A day later the fatigue rolls in and pulls me under the pile of blankets and dogs on the couch. Laying there, I often think of what is referred to in marathon running as the pain cave. It is the point in the marathon when you’ve stopped taking in the crowds and scenery around you because all of your energy and focus is going towards taking the next step. All senses have been replaced by just one feeling-fatigue and it is equal parts horrific and motivating all at once. You want it to be over but to be over you have to keep moving. To be clear, shifting my position from side to back on my couch every few hours is a lot less painful than those final miles in the marathon but the mental game is equally as hard.
Needless to say, between napping and scrolling Tik Tok for videos on how to organize my linen closet or recipes made by old Italian nonnas, I have a lot of time to think. So what do I think about? Lately I’ve been thinking about how I am supposed to be this optimistic, badass, long-distance running woman who has somehow earned the title of “brave” because a few of my cells mutated and turned against me. People often comment on my positive attitude and in those hours spent on the couch, I wonder who the heck they’re talking about. Certainly not me because there’s not much about this I like.
Maybe the tiredness from chemo feels so much deeper because it’s more than just a physical tiredness. It's being tired of the tremendous pressure I have placed on myself to be tough and constantly prove that to myself and others. Throughout my life I have sought out challenges to prove this over and over. Running marathons, attempting to start a business knowing nothing about running one, tackling hard conversations, pushing myself outside my comfort zone, always looking for ways to push myself. When I first found out I had cancer I fully expected to rise to the occasion in the same manner. Case in point, upon diagnosis, I decided I should start looking for a marathon to train for and run. I wanted to be “that '' girl. The one who kicked cancer’s ass while crossing off another 26.2. Ha! Little did I know at the time that there would be days that walking up my stairs would send my heart rate soring and leave me out of breath like I’d just finished a track workout. Somewhere between having to put my feet up after a few loads of laundry and struggling to keep my eyes open past 7:45, I readjusted my expectations. Probably even more significant is that I don’t even care if I can run very far when I am finally given the go ahead to resume normal activity. I don’t care!
There is something different about this battle. In the beginning I thought maintaining a positive attitude was critical to helping me and those around me. That I should "Stay Strong" by making sure I kept my sense of humor, counted my blessings and stayed grateful even as the bottom dropped out of my world. Now, two surgeries and three rounds of chemo in with more to come, that perspective has shifted. I've come to learn that being honest with myself and others is far more important than whether or not I am being positive and frankly requires less of the precious little energy I have. The truth is, when something so devastating as cancer shows up in your life, it takes a LONG time to get to the point where you feel grateful. It takes a LONG time to feel like something positive will come from what has happened to you. It takes a LONG time to feel tough again. Do I expect to get there? Yes I do. I enjoy life way too much to let this pull me under and keep me there. But I am discovering qualities like positivity and strength may present themselves in ways we might not expect. It’s not so black and white. It’s in the moments of grace I give myself to just be; even if that is a crying lump of exhaustion or celebrating the walk I took, knowing someday I will be picking up the pace. It’s giving myself permission to go easy on myself, maybe for the first time ever.
And that right there may make it all worth it.