I would love to write about today from the other side of this. To tell you it was awful, but it’s over. To have a picture of myself ringing a bell and a date I could celebrate every year.
I want that story. I’m happy for the people who get to have it. Sometimes I have to look away because I want it so badly that it hurts.
October 13 is Metastatic Breast Cancer Awareness Day. Metastatic means the breast cancer has spread to other parts of the body, like the bones, liver, lungs, or brain. It’s stage 4, and there is currently no cure. Even when it spreads somewhere else, it’s still breast cancer.
I know people hear that and don’t know what to say. I don’t always know what to do with it either, and I’m the one living with it.
Treatment can help control it and give us more time. But I can’t tell you how many treatments I have left, because I’m not counting down to being finished. I’m hoping what we’re doing keeps working.
And while we wait to see, I still have a life I’m very attached to.
I want to get old with my husband. I want to watch the kids in my family grow up. I want to be around to hear about their first heartbreaks and their terrible decisions. I want a ridiculous number of pictures of Mojo on my phone because we’ve had a ridiculous number of years together.
I want to make a plan six months from now without the little pause in my head.
I still make the plan. I just wish I didn’t have the pause.
Cancer has made me think about losing things while I’m still holding them. I can be sitting beside Pete, doing absolutely nothing, and suddenly feel sick over how much I want to keep doing absolutely nothing with him. It’s an ordinary moment until my brain goes somewhere I didn’t want it to go. Then I’m trying to get back to the television before he notices I’m crying.
I don’t always want to talk about that. Sometimes saying it out loud makes it feel too close. Sometimes I’m tired of hearing myself talk about cancer. I miss having problems that didn’t require a doctor.
But today is supposed to be about awareness, so here’s an honest answer: I’m scared, and I’m still trying to have a life.
My treatment calendar doesn’t have a final appointment marked on it. We’re trying to keep things working for as long as we can, and I’m trying to live inside whatever that gives me. There are days when I can do quite a bit. There are days when getting showered uses up what I had.
I hate having to make those calculations. If I go, will I have enough left to get through tomorrow? If I stay home, how much am I going to regret missing it? Can I eat before we leave? Where can I sit down? How long can I pretend I’m comfortable before I need to tell somebody I’m not?
By the time you see me somewhere, I may have already spent half the day negotiating with my own body.
And once I’m there, I want to enjoy it. I want to laugh without someone studying my face. I want a picture I like. I want to be included in the conversation instead of becoming the conversation.
Then I get home and take the clothes off, take the medication, and try to get comfortable. The picture stays on somebody’s phone. I’m back in bed.
Both happened. Both are my life.
I think about that a lot when people tell me I look good. I know they mean it kindly. Sometimes it feels good to hear. Sometimes I want to cry because I worked so hard to look like myself for a few hours, and I’m afraid they’ll take it to mean I don’t need help anymore.
I still need help. I still want company. I still want people to invite me, even if I couldn’t come the last three times. Having to say no already hurts. Eventually not being asked hurts differently.
I also need to be able to say I’m tired without somebody hearing that I’ve given up.
I am tired. I can love my husband, my family, my dog, and every good thing I have, and still dread another treatment. I can be thankful there’s an option and cry because I have to do it again. I don’t need to be reminded how much I have to live for. That’s usually what I’m crying about.
I wish wanting to stay were enough.
Today, I’m thinking about everyone who knows that feeling. The people waiting on results. The people trying another treatment after the last one stopped working. The people who have gotten very good at saying “I’m okay” because explaining would take more energy than they have.
I’m thinking about the people beside us, too. Pete has to live with this fear while loving the person it’s happening to. My family has to hear news they can’t fix. They have their own lives and their own worries, and cancer keeps finding its way into those, too. I hate that I can’t protect them from it.
And I’m thinking about the people we’ve lost.
People who had plans. People who were loved at home, who had someone waiting for their text, who were supposed to be in the next family picture. I want us to remember them as people, with names and personalities and lives that mattered. Their families still have stories to tell about them.
I want research to give us better answers. I want treatments that leave us well enough to enjoy the time they give us. I want the people living with metastatic cancer to be heard while they’re here, including when what they have to say is upsetting.
I don’t have a beautiful way to wrap this up. I’d rather not need to write it at all.
I’d rather be annoyed about getting older. I’d rather have so much time ahead of me that I could waste a little without feeling guilty.
Today, I have things I want to do and people I want to see. I’ll work out what my body can manage, and I’ll try. Later, Mojo will wedge himself against me like he pays the bills, and I’ll be glad to be home with him.
I want more days like that. So many more.
Love,
Izzy
Mojo & the Mess · Resources · Keep Us Going
My books: Life’s a Mess · Before the Flowers Die
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