the day to day

There is no handbook to living with an incurable illness. Sure, I have been lucky enough to connect with others dealing with the same situation but breast cancer, even metastatic breast cancer, can span vastly different scenarios. There is no way to really predict your outcome based on the experiences of others, for better or worse. Studies are there to guide my doctor’s treatment decisions but she won’t really know how my body, or the cancer within, will respond. Everyone’s body is unique and two women can respond completely differently to the same treatment plan even though they have the same cancer.

I guess what I’m getting at is that very little of what I go through is following a playbook or a certain trajectory. It means there is not a lot that we as cancer patients can control. I can’t will my body into staying on this medication, despite it being the most fervent of hopes in my heart. So how do I manage to get up every day? Do I sit up and bed and just “FUCK IT,” knowing so much of my fate feels out of my hands. (Sometimes. Sometimes, and in fact a few days this week, that was my exact mantra upon waking up.)

I try and focus on the things that I can control. Eating well provides me with a lot of comfort. Since the fall, I have been working with a nutritionist who specializes in working with cancer patients. We focus on supporting my healthy cells, maximizing protein, and loading up on fruits and vegetables. No one on my medical team told me to do this and she’s not promising me some sort of miracle cure. But it is within my control to eat well so I do. Same with exercise. The days where I move my body (when did that become an expression, btw?) I feel like I’m actively fighting cancer. Each workout I log is me desperately trying to seize back control of my body. I want to be the one telling it what to do, not the cancer.

Both of these obsessions, which it is what I need to honestly acknowledge they are right now, SHOULD help my outcomes, but that’s a big should. Far from a guarantee. I get more than just physical benefits from eating well and exercising — the mental reward of feeling like I’m doing something beyond passively taking pills and receiving injections.

My next monthly appointment is coming up next week. I feel like just yesterday my doctor told me the excellent results from my scans. And every day that passes from scan day, I feel the thread of confidence fray just a little bit. Before we know it, I will be back in the PET scan machine, radioactive dye coursing through my veins, possibly lighting up as it comes across areas of concern. There is no one way to survive day to day between the scans, between the appointments. I’m not sure my way is the best way. There is a lot I push to the side, because it is too scary, too dark, too painful to think about. The scans, the appointments, my Instagram feed, E’s concerns and questions — they make it impossible for me to ignore my illness.

Some days, I want to hide in my bed, let the world carry on without me. I don’t want to make the calls to refill my prescription, ask for a second opinion, schedule the appointments. Finding the things that push me to emerge from under the covers is important and not always an easy task. Work does not provide me that motivation so I’m trying to find it elsewhere. Working out, eating an egg sandwich, holding hands with E, seeing friends when the pandemic allows — those are the things that run through my mind when I’m frozen in place and give me the lift to put my foot on the floor and get out of bed. No one told me how to do this and I can only take it one step out of bed at a time.