Today I sat in an infusion chair for the thirty-third time.
When people hear that I am currently in No Evidence of Active Disease, they often assume that means I must be doing well. In many ways, I am. My treatment is working. My scans are stable. My oncologist is happy with where things stand. If you looked strictly at my medical chart, you would probably consider me a success story.
The problem is that medical charts only tell part of the story.
What they don’t show is how exhausting it is to live with metastatic cancer, even when treatment is working exactly as intended.
Over the last few weeks, I haven’t felt like myself. Nothing dramatic has happened. There hasn’t been a bad scan result or a major setback. In fact, from the outside, things are probably looking as good as they have in a long time. Yet I have found myself carrying a level of physical and emotional exhaustion that is difficult to put into words.
People tend to think of exhaustion as something that can be fixed with rest. Get more sleep. Take a vacation. Slow down for a few days.
This isn’t that kind of exhaustion.
This is the exhaustion that comes from knowing cancer never really leaves the room.
Even when my scans are stable, cancer still dictates the rhythm of my life. Every three weeks, I sit in an infusion chair. Every month, there are injections. Every day, there are medications. There are side effects that have become so routine that I sometimes forget they aren’t normal. Fatigue, brain fog, physical changes, aches, pains, and the countless other reminders that my body is being asked to tolerate treatments designed to keep me alive.
I am grateful those treatments exist. I know there are people who would give anything to have a treatment plan that is working. I know there are people facing progression, searching for options, and hoping for more time. That awareness never leaves me. At the same time, acknowledging that reality does not erase the fact that treatment comes with its own burden. Gratitude does not magically make fatigue disappear. It does not make side effects easier to tolerate. It does not make the constant appointments, medications, and uncertainty feel less overwhelming.
One of the hardest things about living with metastatic cancer is that I don’t think you ever fully recover from the moment your body betrays you.
Before my diagnosis, I trusted my body without thinking about it. If something hurt, I assumed it would pass. If I felt tired, I blamed a busy week. If I had a headache, I took an Advil and moved on with my day.
Cancer permanently changes that relationship.
Now every symptom exists within a different context. Every ache, pain, headache, cough, or unexplained change forces a conversation that most people never have to have. Is this nothing? Is this treatment-related? Is this cancer? Is this the beginning of something I don’t want to know?
Most of the time, those fears stay in the background. I’ve learned how to live my life despite them. But they never disappear entirely. They are always there, quietly waiting for the next scan, the next lab result, or the next appointment.
That constant state of awareness is exhausting in a way that is difficult to explain to someone who hasn’t experienced it.
Living with cancer is a full-time job.
There are appointments to schedule, medications to manage, insurance approvals to navigate, labs to complete, scans to coordinate, side effects to monitor, and financial decisions that are often influenced by healthcare needs. Every week requires some level of attention to the disease, even when the disease appears stable.
The reality for most of us, however, is that cancer isn’t the only full-time job we have.
I still have to work.
I still have deadlines.
I still have responsibilities.
I still need health insurance.
I still need an income.
I still need a sense of purpose and normalcy in a life that has felt anything but normal for the last twenty-two months.
There are days when I finish a full day of work and realize that I have spent the entire day pretending to feel better than I actually do. Not because anyone expects me to, but because life keeps moving. Bills still arrive. Projects still need to be completed. Responsibilities don’t disappear because you’re tired.
That reality can feel incredibly isolating because the world tends to measure how you’re doing by your scan results.
If the scans are good, people assume you’re okay.
If treatment is working, people assume life has returned to normal.
If you’re NED, people assume you’ve somehow moved beyond cancer.
What they don’t see is the amount of energy required to maintain that version of normal.
They don’t see the exhaustion.
They don’t see the fear.
They don’t see the mental weight of knowing that everything looks good today while understanding how quickly things can change.
Earlier today, I came across a video where someone described being homesick for a person they’ll never see again. The phrase stayed with me for the rest of the day because my mind immediately went to the people I love.
People often assume my greatest fear is dying. The truth is that my greatest fear has always been leaving behind the people I love. The thought of my husband having to navigate life without me, the thought of the people closest to me carrying that grief, is what stops me in my tracks. It is a thought that arrives without warning and hits with a force that never seems to lessen, no matter how long I have been living with this disease.
Perhaps that is why these last few weeks have felt heavier than usual.
The longer I live with metastatic cancer, the more I realize that good news and difficult emotions often coexist. I can be grateful for stable scans while feeling overwhelmed by the demands of treatment. I can be thankful that my medications are working while feeling frustrated by their side effects. I can celebrate being NED while still acknowledging that living with cancer is hard.
Those realities do not cancel each other out.
They simply exist together.
Today was my thirty-third infusion. On paper, everything looks good. The truth, however, is that surviving and living are not the same thing. While I am deeply thankful for every stable scan and every additional day treatment gives me, I am also tired. Not because I lack hope, and not because I fail to appreciate how fortunate I am, but because carrying metastatic cancer is heavy. Some days that weight is easier to carry than others. Today, it felt especially heavy.
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