I have been doing chemo long enough that I should know better, but every round I still convince myself that this one might be different.
Maybe I’ll stay ahead of the nausea. Maybe the pain won’t get as bad. Maybe I’ll sleep through the worst of it. Maybe I’ll get some work done from bed and only lose a couple of days.
Then chemo week starts and humbles me all over again.
This last round was my heaviest one yet. I knew that going into it, so I wasn’t expecting to skip out of treatment feeling wonderful. Still, there is knowing something is going to be hard, and then there is actually being in it.
Those are two very different things.
Expectation: Chemo day is the bad day
Most people picture chemo day as the worst part. You sit in the chair, get the drugs and immediately become sick.
For me, chemo day is mostly a lot of waiting. Labs, medications, syringes, IV bags and people checking numbers to make sure my body is allowed to be poisoned again. That sentence sounds insane, but that is basically what happens.
Then I go home tired, drugged up and usually a little too confident because the premedications are still doing their job. Sometimes the prednisone gives me a fake little burst of life, and for a few hours I think maybe I’m okay.
I’ll answer messages. I’ll check on Village plans. I’ll talk about something I want to get done the next day like I have not lived through this exact situation before.
Pete knows better. He lets me make my little plans while quietly preparing for what is coming.
Reality: Chemo day is the warning
The actual crash does not always happen while I’m sitting in the infusion chair. It waits until I’m home and starting to believe I got lucky.
Days three and four are usually when everything really catches up with me. The nausea gets harder to control. My mouth starts hurting. Food tastes like I’m licking a handful of change. My head hurts, my body feels heavy and the bone pain works its way into places I didn’t even know could hurt.
This round came with enough pain medication to make me forget entire conversations, but apparently not enough to make my bones forget they have cancer.
There is no comfortable position. Lying down hurts. Sitting up hurts. Moving hurts, but staying still too long also hurts. Eventually I start rotating around the bed like a gas station hot dog, hoping one side of my body will finally stop screaming.
It does not.
Expectation: I’ll eat before I get nauseous
I always start chemo week with food I think I’ll tolerate. Bland things, snacks, drinks, easy meals and whatever sounded good before the medication changed every taste bud in my mouth.
The plan is to eat small amounts throughout the day so I never get too hungry and make the nausea worse.
Very reasonable. Very responsible.
Then Pete makes something, I smell it from another room and suddenly the entire house has betrayed me.
I’ll decide there is exactly one thing I can eat. Not one category of food. One specific item from one specific place, prepared one specific way. Pete will go get it because he loves me and because he knows there is no point trying to offer a substitute.
By the time he gets home, I no longer want it.
Sometimes I cannot even look at it.
This man has spent years playing a game called “What Can Izzy Eat Today?” The rules change constantly, there is no prize and somehow he is always losing.
Meanwhile, I’m hungry and nauseous at the same time, which feels like my stomach is arguing with itself and has decided to involve everyone else in the house.
Expectation: I’ll drink plenty of water
Everyone tells you to stay hydrated during chemo. They are right. Hydration matters, especially when your body is trying to process medications that feel like they were designed by someone who personally hates you.
But drinking enough sounds much easier when water does not taste disgusting.
Sometimes it tastes metallic. Sometimes it tastes thick, even though I know that makes no sense. Sometimes I take two sips and feel like I have completed a chore.
I keep drinks everywhere because there is no guarantee I’ll have the energy to go find one later. Water, electrolyte packets, Diet Coke for the migraines and whatever else my stomach has not rejected yet.
Some rounds, I still end up needing hours of hydration because apparently staring at a water bottle from across the room does not count as drinking it.
I checked.
Expectation: I’ll rest and catch up on things from bed
Before treatment, I always try to get ahead. I answer what I can, schedule posts and make lists of things I can supposedly handle while I’m down.
I imagine myself in bed with my laptop, resting but still being somewhat useful.
The reality is that chemo brain turns one email into a major assignment.
I open a message, read it and forget what it said before I reach the end. I start typing a response, stop halfway through and later find it still sitting there unsent. I pick up my phone to answer someone, get distracted by something else and then spend twenty minutes looking for the phone that is already in my hand.
Trying to plan The Village during chemo has made this especially interesting. I can be half asleep, nauseous and on enough pain medication to sedate a small horse, but somebody still needs an answer about a table, a banner, a raffle basket or the kids’ area.
There have absolutely been moments when I have looked at something I handled during chemo week and thought, “Who approved this?”
Unfortunately, it was me.
Even while I’m down, The Village keeps growing. I’m thankful for that, but it also means my brain never fully shuts off. I want to be involved. I want to know what is happening. I want to keep working because this matters to me.
Then I read the same sentence four times and realize chemo has officially closed the office.
Expectation: Being exhausted means I’ll sleep
This should be true.
If I can barely keep my eyes open, I should be able to sleep. Instead, my body will be completely exhausted while the steroids have my brain running like it just drank six cups of coffee.
I’m tired, but I cannot get comfortable. I’m nauseous, but I’m hungry. My head hurts, my bones hurt and every time I finally start falling asleep, I need the bathroom or another medication.
Mojo is usually pressed against me, which is sweet until a twenty-something-pound French bulldog somehow becomes the heaviest object on earth. He has the entire bed available and still needs to be directly on the part of me that hurts most.
He is helping.
According to him.
Expectation: I’ll answer everyone checking on me
I see the messages. I see the comments. I know people are waiting for an update, and I know it comes from a place of love.
Sometimes I can answer. Sometimes all I can do is read them.
Chemo makes even simple conversations feel like work. I may know exactly what I want to say and still not have the energy to type it. Then enough time passes that I feel guilty for not responding, which makes me avoid the message longer.
It is not that I do not appreciate people checking on me. I do. Especially during the weeks when I feel completely buried under treatment.
I just cannot always be sick and explain being sick at the same time.
Sometimes my update is going to be short. Sometimes it is going to be a picture from bed. Sometimes it is going to be silence until I can put a full thought together again.
That silence does not mean I stopped caring. It usually means I am using everything I have to get through the day in front of me.
Expectation: I’ll feel better by a specific day
I am constantly making deals with the calendar.
If chemo is Monday, maybe I’ll feel better by Thursday. If Thursday is bad, then definitely Friday. If Friday is also bad, surely the weekend will be different.
I start assigning responsibilities to a future version of myself who has not agreed to any of them.
Future Izzy will finish the blog. Future Izzy will answer the emails. Future Izzy will shower, eat a real meal and return to society.
Sometimes she shows up. Sometimes she is also in bed.
There usually is a moment when I realize the worst is beginning to ease. It is not a huge transformation. I do not jump out of bed feeling brand new. I just notice that I have gone a little longer without needing the bucket. Something tastes less terrible. The pain medication lasts the way it is supposed to. I walk into another room without immediately needing to lie back down.
Tiny things start feeling big.
A shower becomes an accomplishment. Clean pajamas feel like a complete reset. Eating something and keeping it down feels worthy of an announcement.
That is the part of chemo week people do not always understand. The scale of what counts as a good day changes completely.
The reality nobody sees from the infusion-chair picture
Chemo is not just the time spent getting medication. It takes the days before treatment too, because I’m getting ready, handling everything I can and worrying about how hard the round will hit me. Then it takes treatment day. After that, it takes however long my body decides it needs.
By the time I begin to feel like myself again, the next round is already waiting on the calendar.
That is what wears me down the most. It is not only the nausea, pain or exhaustion. It is how much of my life gets arranged around being sick, preparing to be sick or recovering from being sick.
I hate losing days. I hate watching things pile up around me. I hate needing so much help. I hate that Pete can tell how bad the nausea is by which bucket he needs to bring me.
But there are funny parts because there have to be. If we did not laugh at some of this, we would lose our minds.
There is nothing normal about having nausea medication in every room, discussing bowel movements like breaking news or being genuinely excited because I ate half a sandwich. But inside this house, during chemo week, those things are normal.
There is no graceful version of it here. It is messy. It is medication alarms, untouched food, weird cravings, lost thoughts, clean blankets, bad sleep and Mojo supervising all of it.
Every round, I expect myself to handle it better because I have done it before. The reality is that knowing what is coming does not make it hurt less.
It just means we know where to put the buckets.
If you have been through chemo, tell me your biggest expectation-versus-reality moment. I know I cannot be the only person who becomes convinced one extremely specific food will save me, only to hate it before it even reaches the house.
Before You Go…
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