personal experience – Rebecca Frost

A Millennial’s Guide to Breast Cancer: And So It Goes

For my fortieth birthday, I bought myself a five-year journal. I’d gone back and forth on it for a while, because I’m not exactly a daily journal writer, but I figured I could make myself do a few sentences each day. It would be fun to look back on things and see what happened, even with the mundane stuff.

Before I ordered it I did think to myself that it was a bit of an optimistic gift for myself: This means I need to live another 5 years, ha ha ha.

It didn’t help that I was diagnosed with laryngitis on my birthday and we had to put off celebrating until I felt better. It didn’t feel like an auspicious start. But I kept up with daily updates, not forcing myself to fill up all the given space if I didn’t feel like it, for longer than I thought I would. My initial scans and biopsy are in there, and the surgery. Later in the summer, though, it felt like it was just another “Felt terrible today. No other updates.” And other such things that I actually don’t want to remember, thanks.

Fast forward to October.

I started these blog posts at a very low time, actually. In October 2024 I’d finally (finally, finally!) signed with an agent after four years of querying. In October 2025 my now-former agent released me from contractual obligations. (That’s the official wording. Honestly it feels like being dumped and, once again, told that I’m not good enough.)

The thing is, I’d focused on my writing and presumed future publications as my reason to get through treatment. In my lowest moments, I clung to the idea that I finally would be published and in bookstores. That was my reason to push through, and then … suddenly … that reason didn’t exist anymore. Where the heck was I supposed to go from there when my path forward was just dynamited?

So I started writing these posts. I outlined twelve things I felt like I was able to talk about now, and figured six weeks was actually a pretty long stretch of time. There’s a lot to say about being diagnosed with cancer, after all, and I’ve written about 18,000 words on the subject. That’s way past a short story and into novella territory. But now I’ve come to the end of those twelve ideas, and I don’t think I’m ready to write about some of the other things yet.

They’re still too nebulous.

Some day I’ll write about how the bad days now feel even worse, even though they’re better, because I’m sooooo close to being back to normal. The bad days remind me that hey, I had cancer, and no, things aren’t normal anymore. It’s just not fair.

I’ll write about the weird compartmentalization that means I forget that I had cancer, even though I’m taking medication for it daily. The incisions still hurt from time to time, and the scars are obvious, but otherwise I try to ignore it … unless it gets stuck in my head and I dwell on it.

I’ll look back on this first holiday season after my diagnosis and maybe have an answer as to whether this is normal “getting back to life after cancer” or if the holidays themselves actually add to the emotional tornado. There’s no way of knowing how bad things would be if I hadn’t had that mammogram, and the chances of me having died by now without a diagnosis are slim (breast cancer is usually slow-growing), but I can’t help but think these things. The what ifs? run in herds.

Someday—I hope—I’ll also be able to tell you exactly when you feel like you’re actually past the cancer and not just waiting for the next bad news. Yeah, that’s a pretty big hope. I don’t know if that will ever happen, but I won’t even have my first post-treatment mammogram until next spring. I didn’t know I had cancer before, so there’s no way for me to be sure I don’t have it now.

That’s also wrapped up in this idea that I shy away from thinking of myself as a “survivor.” Like yes, I’m still here, but have I won? Is it really over? And why does it feel like it’s the treatment I had to survive, not the cancer itself?

I’m sure there’s also a whole essay behind saying memento vivere instead of the more common memento mori, but right now I feel like it’s so obvious that, if you don’t get it, I can’t explain it. That means I’m still too close to really write about it.

So the main thing is, it’s not over.

I’m still reminded of my cancer every day, sometimes multiple times a day. I’m still negotiating the side effects of the medication I have to be on to reduce the chances of the cancer ever coming back. (I’m still doing gymnastics to word sentences that way because there’s no guarantee it will completely prevent the cancer from coming back.)

Since my own diagnosis, two people I know and one friend of a friend have been diagnosed with breast cancer. Sharing stories is remembering, too, and dealing with the conflicting emotions between the memory of how bad it was with the idea that I’m still so lucky. This is a thing that happened to me, and parts of it are still happening, and it’s not like I just “can’t let it go.” It’s simply not over. There will be more.

I hope you have a wonderfully warm and bright holiday season with those you love. Memento vivere, and find the joy everywhere it exists.

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A Millennial’s Guide to Breast Cancer: Write What You Know

I didn’t start reading Stephen King until the summer after college. I’ve always been a voracious reader, and I can only remember one time when my parents intervened. I wanted to read Pet Sematary (it had a kitty on the cover!) but I was in second grade, so they suggested that maybe I put that one off for a while. There’s no real reason I put it off for so long, but it generally surprises people that I got such a late start.

In ‘Salem’s Lot, Catholic priest Father Callahan visits another character in the hospital and spends some time musing about how his parishioners usually react to sudden medical news like cancer, a heart attack, or stroke. Father Callahan’s experience tells him that these hospital visits are usually with someone who feels betrayed by their own body, but they can’t get away from the betrayer like they could if it was a backstabbing friend. It’s a dark assessment from a priest who’s losing his faith but who, at that point, has only really observed such things from the outside.

King was 28 when it ‘Salem’s Lot was published, and although he had personal experience with Callahan’s alcoholic, he was still decades way from the car accident that turned him into the patient. Characters like Edgar Freemantle in Duma Key (one of my favorites, and sadly not as well known) clearly come from his own lived experience, but Callahan’s dour assessment comes as an outsider.

Even though I was in my early twenties when I read it, though, it stuck with me. You can bet that scene ran through my mind after my own diagnosis.

Callahan’s not my favorite character

At least, not in ‘Salem’s Lot. He shows up again in The Dark Tower series, and although he’s not exactly young in ‘Salem’s Lot, this second appearance gives him more depth and complexity. The original Callahan is a bit whiny, wishing he had a true battle to fight for his faith. It’s one of those “Be careful what you ask for” situations, and Callahan’s one of King’s tragic characters in his initial arc. When he goes to visit the sick character in the hospital, he hasn’t really been tested himself. He means well, but he doesn’t know what he’s talking about. Callahan’s looking from the outside in.

Even though I didn’t start reading King until I was older than most fans, his works are still a major component of my life. I’m the co-chair for the Stephen King area of the National Popular Culture Association conference, and I’ve written multiple chapters and two books about his works. I’ve got all his books in paper, digital, and audio formats. I’m most definitely a Constant Reader (but do not claim to be his number-one fan). Granted, King’s brand of horror isn’t exactly what you want to relate to in your daily life, anyway, but my mind automatically goes to make connections, not just from one of his books to the next, but between what he writes and what I experience.

To be fair, it’s not just King. When I was very young I read Eighty-Eight Steps to September and cried my eyes out when the main character’s little brother died from leukemia. Jan Marino just kind of paved the way for a Lurlene McDaniel phase later on. If you’ve never read one of her young adult novels, they’re full of teens going through incredibly traumatic medical diagnoses. Lots of her characters die. If the main character isn’t diagnosed with something, then their love interest is.

As we’re growing up, that’s our usual experience with intense medical issues: whatever we see or read in the media. And, let’s face it, a lot of those stories end with death. I remember my mom explaining to me that Eighty-Eight Steps to September was set far in the past (okay I think it was the fifties, but I’m trying to remember something I read in like 1991, so maybe that just felt like the far past to me at the time) and little kids don’t die from cancer like that anymore. That’s not quite true, but she had to say something to a six-year-old crying over a fictional character.

But that’s what fiction has taught me: that kind of diagnosis is an utter betrayal, once you can’t get away from, and one that’s going to end tragically.

Life imitates art?

At this point I think the most unrealistic thing about Father Callahan’s assessment is that it means his parishioners had to speed-run the stages of grief. I still have times when the thought “I had cancer” just doesn’t make sense. One of my friends said he mother-in-law sometimes gets hit with it, and her diagnosis was five years ago: “Huh. That happened. I lived through all that.” If I’m going to feel betrayed by my body, then I need to actually internalize what happened to my body.

And I also get that it’s weird to think that I should feel something just because some author somewhere put it in one of his character’s heads. It doesn’t even have to be what King himself thought back then, because he usually writes about entire towns and has plenty of opportunities to explore different points of view. It’s just a scene that was so vivid, something Callahan dwelt on in his own mind for quite a while, that it stuck. When you have cancer or a heart attack or a stroke, you feel like your body’s betrayed you.

I’ve actually spent a lot of time thinking about it. To my mind, the cancer isn’t a betrayal by my body, because it’s not me. It’s like a little mutant invasion. (Now y’all might also need to reassess how well you think I’m coping. The journey’s a long one.)

The other side of things—the Lurlene McDaniel side of things—means trying to work the whole “It’s statistically unlikely I’m going to die from this” thing into any initial announcement. Cancer is a big scary word, and the people who care about you want to know how bad it is. If caught early, invasive ductal carcinoma has a 5-year survival rate of 99%. I’m too old to be a Lurlene McDaniel heroine, anyway, but the odds were in my favor.

That doesn’t mean nobody asked if I was going to die. You can kind of guess how the age of the person in question factors into things, because hey, the younger you are, the more likely it is that your only association is cancer equals death. But even calling it “breast cancer” means there are so many possibilities for how things are going to unfold. People who’ve watched loved ones on their own journeys had more questions, and maybe more worries, than others. They had a better, more personal understanding.

Wait, so should authors stop writing outside their own lived experience?

Okay, that’s a whole can of worms and there are no easy answers. When it comes to the experience of cancer patients, though … yeah, it’s still complicated. Stephen King, writing before I was born, had no idea how much that scene would stick in my head when I read it later, or how it would come back after my diagnosis. Lurlene McDaniel started writing to deal with her son’s medical diagnosis, and honestly I think she can be credited for teaching a lot of us about the different conditions she gave her characters. That’s not something the average teen can just sit down with their parents for an in-depth discussion.

I also think that these approaches come from a place of empathy. Authors can’t always write characters who are only like themselves, so they have to try to imagine all kinds of different people whose experiences and thought processes aren’t the same. Cancer and other major medical events happen in the real world, so leaving them out completely, especially over as many books as King has written, would be unrealistic. And honestly, if I’m struggling to understand my own experience, then I can’t really fault someone who’s never gone through it for writing something different than what I’m feeling. Heck, other survivors have entirely different experiences, and that doesn’t make them wrong.

In the spirit of books and scenes that maybe stuck with you longer than they should, recommend your favorite book to a friend or post about it online. Share the love for your favorite author. Read new stories, expand your horizons, and memento vivere.

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A Millennial’s Guide to Breast Cancer: The Dark Night of the Soul

A couple years ago I was on a writer’s forum and the discussion was about plotting. Somehow I mentioned that I’d never read Save the Cat Writes a Novel, and someone—a complete stranger—scoffed back that we have to learn the craft. After a moment of internal debate, I responded that some of us had started “the craft” before Save the Cat was even a thing.

It began as a screenwriting tool to help map the major beats of a project. The idea is that, if you follow this basic story outline, you’ll write a blockbuster (or a bestseller). If you think those beats look a lot like the hero’s journey, well, what can I tell you. There are only six plots.

One of the Save the Cat beats is called “The dark night of the soul.” It comes after the “all is lost” moment, and it lines up with Campbell’s heroic arc: the main character appears to lose everything and goes through a final trial before the ultimate confrontation. It’s the absolute lowest point but, because it’s fiction, you know a) that it don’t get lower, and b) that the hero will ultimately win.

Cancer doesn’t come with those guarantees.

One day second at a time

Radiation doesn’t have as many side effects as chemotherapy, check. Advances mean that I was able to complete my therapy in five days, check. But it certainly wasn’t a frolic through a field of wildflowers.

I know a lot of things now that I really could’ve done without. Thanks to my ink dealer, I have recent enough data to know that a healing tattoo doesn’t feel as bad as radiation burns. I also know that using the same ointment on said tattoo that you used on said radiation burns gives too many flashbacks. That smell will forever be tied to last August.

I also know that standing still takes more energy than walking. If you think I’m full of it, then you’ve never been that tired. Spoonies get me. How tired is that? Well. It’s too tired to even keep sitting up, but it’s not the kind of tired that means you can nap. It means you lie there, eyes closed, and you feel every passing second as in individual thing. Even playing those audiobooks I mentioned last week doesn’t always help. That takes a certain level of concentration, and concentration takes energy.

And this is also too tired for reading paper books, by the way. If you’re too tired to sit up, you’re too tired to hold a book or a Kindle in bed, and keeping your eyes open so you can see the words? Hah. Too tired for that, too. It’s the sort of tired you would dearly, desperately love to sleep through, but you can’t sleep.

For me, the lowest point (I confidently type now more than four months after my surgery) was the Sunday during my radiation treatments. I had the first three Wednesday-Friday, so the weekend was “off” before my final two appointments. Saturday wasn’t good, but Sunday was “lie in bed and wonder why the hell you’re putting yourself through this” bad. Seriously, it’s a mindfuck when you felt fine and it’s the treatment that makes you feel like crap. (My mom doesn’t like it when I swear, but le mot juste is le mot juste.)

And the thing is, in those dark nights of the soul, it’s just you. There’s not really anything anyone else can do in that moment, because nothing’s the right thing, anyway.

All that’s left is you

And that brings us to one of my favorite tweets:

During the whole cancer experience—not just the dark nights of the soul—I found myself relying on past experiences. I’m not particularly good at meditation, but I’ve tried it before, so I could count and do the 4-7-8 breathing technique. I can’t say for sure that it really helped with relaxation, but it gave me something to focus on.

I’ve already sung the praises of Dan Stevens and his audiobooks, but comfort media really comes in handy when you don’t have the energy for something new. You don’t have to follow along with plot twists because you already know them. I’m not saying I could recite the entirety of And Then There Were None, but that’s one I could play while I lay in bed, not sleeping, because I could drift off and tune back in. It could run, and mark the passing time, but if I missed a part, I wouldn’t really miss it. (Did you know that clocks are pretty much everywhere in hospitals? There’s got to be a study about the visual marking of the passage of time in those kinds of situations.)

There’s also all sorts of emotional regulation that has to happen when you’re going through cancer. You don’t want to explode and alienate the people who are helping you through it, and maybe you really just don’t want to break down and cry in front of someone. In the moment it’s hard to explain exactly why it sucks, because there’s nothing specific. There’s not a pain right here that you can point to, and on top of it, you’re probably not sleeping well, so your thoughts are fuzzy. It just sucks, in a very general kind of suck, but there’s nothing you can do to get out of it except pass the time.

This is why you’ll want to lay in the comfort foods and make sure your favorite clothes are handy. You’ve got so little room for discomfort outside of the stuff you just can’t avoid, and so little patience. Your world gets very small when you have cancer and all the energy you have left is seriously put into survival.

It’s not even glamorous survival. You’re not a prepper, laying in stores in case the world goes through an upheaval. You’re not in a zombie movie, defending your home and loved ones against a visible, common threat. You’re not in the death zone on Everest, focused on your goal of reaching the summit and standing on top of the world. You’re just … breathing, and trying to convince yourself that it’s honestly worthwhile to keep breathing.

Cancer sucks.

Sometimes what sucks about it the most is the inability to explain exactly why it sucks. You just feel cruddy, but none of the usual remedies help the way you’re used to. Seriously, I’m still betrayed by the inability to nap.

Cancer really does kind of reduce you, except in this case I mean it the way you reduce a sauce: the excess goes way and leaves you with your core. That’s what gets you through it, second by second. Nobody really prepares to get that diagnosis, but everything you do in life comes back to you in surprising ways.

Today you should remember one of your past loves and try it again. Get out the crayons—bonus if it’s the box of 64 with the built-in sharpener—and draw something colorful. Plunk out a song on the piano. Sew something small. Whatever it is, whatever your love, let it come back to you, and memento vivere.

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A Millennial’s Guide to Breast Cancer: “If There’s Anything I Can Do …”

This is the other side of the coin: after you tell someone you have cancer, their most likely response is “Let me know if there’s anything I can do.” We’re not trained on what to say to bad news, and I can’t say I’ve come up with anything better. The thing is, though, that it puts all of the responsibility back onto the person at the center of the bad news.

The way I figure it, this post can go two ways. If you’ve recently been diagnosed with breast cancer, it can give you some ideas if you’re looking to plan ahead. It can also be shared with the people who say to let them know if there’s anything they can do because … well, it’s a list of things that helped me.

I will say that, sadly, having a list doesn’t always help. I made a similar Facebook post shortly after my diagnosis with some ideas and a wish list link, and a couple people apparently decided I either didn’t really mean it, or that they should get me something even more special. They said yes, of course, they saw the list … but what did I really want? So it’s not foolproof, but also, if someone you know has cancer and made a list, buy them something off it.

For clarity’s sake, none of these are sponsored items. I don’t earn or get anything if you click the links. It’s just me trying to share in the hopes that it will make someone else’s journey reasonable.

Feed me

This is a case of knowing what’s really going to help someone and their household. My husband likes cooking, so my close friends asked what they could do that wouldn’t interfere with that part of it. They didn’t want to take that away from him. I suggested gift cards for our preferred meal box, Blue Apron; Misfits Market, where we also frequently order; or to our local grocery store. We live in a very rural area, so I made sure people knew that cards to places like Walmart wouldn’t be as helpful – the closest one is still over 50 miles away. Keep in mind, too, that not every place has something like Uber Eats, although that would absolutely be useful for anyone who lives where they can order that way.

It’s also totally the time for comforting favorites. We didn’t have a local cafe, but if someone loves getting a coffee or a treat and you know their favorite spot, get them a gift card to use there. Some days even just leaving the house to go get a latte or a smoothie was worth the effort of getting ready … because it wasn’t leaving the house for another appointment. Heck, get someone a gift card for avocado toast.

Stress alone can make it difficult to eat, even outside of the side effects from treatment. I stocked up on Soylent, which is my preferred meal replacement drink. The original flavor is oaty but not as sweet as most meal replacement shakes. I needed something I could just drink and be done with when I really didn’t feel like eating, and Soylent is the one I can chug. It’s helpful to have a supply on hand for the times when nothing sounds good, but you know you’re just going to feel worse if you don’t eat.

Microwavable and other ready meals also help. I had a lot of comfort food: macaroni and cheese, chicken nuggets, pizza rolls … Yes, on the one hand you want to eat healthy, but on the other, seriously, some days it’s hard to eat anything at all. Sometimes you’re microwaving another breakfast burrito and chanting “Fed is best” as it spins around. Reality is what it is, and you really don’t have the time or the energy to waste wishing things were different or that you could be “better” about your diet.

Creature comforts

Get a seatbelt cover before your surgery date. Even if you’re sure your incision isn’t going to end up in seatbelt range, bodies aren’t logical. It’s really weird sometimes what will make things hurt, and you don’t want to aggravate it. Sometimes even a short encounter can have effects that last for days.

I wore a SheFit bra on my surgery day. The front closure makes for easy on and off, and I already had some for exercise, so I knew I’d get a lot of use out of them. The closure ended up irritating my incision, though, so I switched to Yana Dee bras. They’re easy to step into and comfy for all-day wear. And I’m also still wearing them four months after surgery – I tried one of my previously comfortable everyday bras once and had to take it off after an hour, so I’m willing to wait a while before trying again. It’s good to have choices, because you don’t really know what things will be like when you wake up.

I had mug warmers long before this, but they’re lovely to have when you’re not sure if you want to keep getting up and moving around. This one has three different temperature settings so you can keep your drink just as hot as you like. It’s a small thing, but in the middle of trying to just get through another minute, the small things add up.

Part of the exhaustion will mean napping at all hours of the day, so you’ll want a good eye mask. Overstimulation is also real, so consider some earplugs – this version from Loop lets you pick exactly how much ambient nose you want to hear. And speaking of bed, you’ll end up wanting different blankets: a fuzzy comforting one, and also a cooling blanket for when you start getting hot flashes. I’ve got a cooling pillowcase, too.

Time after time

If you’re not good at being patient – and who really is? – then you’ll want to prepare for all the waiting. I knew that this would be particularly difficult for me, in part because everything was happening during summer vacation. I didn’t have to worry about my job, but I also had to figure out how to fill up the time myself when I didn’t have enough concentration or energy for everything I’d planned to do.

Audiobooks are one good way for me to reassure myself that time’s passing even if it doesn’t feel like it. I started with audio versions of books that I’d already read and branched out from there. Dan Stevens is one of my favorite narrators, and his version of And Then There Were None is one of my comfort listens. I could go lie down, not sure if I was tired enough to sleep or just not awake enough to sit up anymore, hit play, and it didn’t matter if I fell asleep because I know the story so well.

The main thing I suggested for people who wanted to help was craft kits. All kinds of craft kits. I’m already a knitter and have plenty of yarn, but I branched out to brick painting, mosaics, window clings, latch hook, and more. Basically if it came all together in a kit, I’d take it. Some of them took less time and energy, so I’d pick those when I needed to feel a sense of having accomplished something. Others took longer, so I’d have to figure out a good time to put it down and pick it back up again later. Mostly I just had so many hours to fill, and I needed to do my best to take my mind off of what was coming next or why I was so darn exhausted all the time.

And of course, if all else fails, there are gift cards. Get them to a specific place, or give someone a card with money to spend wherever will help the most. This is absolutely the time to let people have little treats because hey, we’re fighting for our lives. Even if we didn’t realize we had cancer and that wasn’t making us sick, the treatment packs a huge punch.

And if you don’t have money, give time

It doesn’t even have to be much time. People sent me text to let me know they were thinking of me. They shared memes at 3am for me to find later. It’s called pebbling, and it’s a solid way to support someone. Listen, it’s morbid, but we need to know for sure that someone’s going to miss us if we die. In the darkest moments in the middle of treatment, when it’s just absolutely so freaking unfair that it’s the cure that’s making us sick, we’ll cling to whatever we can get. Send the stupid meme.

I believe that last part so much that I’m making it your action item: send a message, meme, or gif to someone you care about. Let them know you’re thinking about them even when they’re not around to remind you they exist. Memento vivere, and may they send you a 3am meme in return.

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A Millennial’s Guide to Breast Cancer: I Don’t Know How to Say This, But …

It’s kind of ironic that I don’t know how to start this post. Do I tell you that I’m the kind of person who can carry a heavy load but will completely and totally break down at the last straw, baffling everyone who just sees a single straw? Or how I really hate speaking bad news out loud because that’s what makes it real? I can text it just fine, but if I have to say the words, I’ll start crying.

I could also start by explaining that the seniors get out earlier than the rest of the students. This wasn’t true when I was in high school, but that’s how it works where I teach: near the end of May, seniors have a short week with some days of normal classes and then two short days for all their exams. This happens at the same time all the other grades are going through their usual hours, so we have to get the exams to the office so someone can oversee them. Students can be exempt from their spring exams, too, so they don’t even always have to come to school on their last day.

I found out that I had cancer on the seniors’ last exam day. I was done with my other classes, and I wasn’t going to see the seniors, so I didn’t miss anything that day. It was also the Friday before Memorial Day weekend, so that gave me time to think. Too much time, maybe. Do I say something? And, if I want to say something … what?

Good news, everyone!

(Okay, if you don’t watch Futurama, you really need the explanation on the wiki: “Good news, everyone!” is Professor Hubert J. Farnsworth’s catchphrase. His good news usually means a suicidal mission for the Planet Express crew. Very infrequently is the news actually good.)

Is there ever a good way to share bad news? Considering the timing, I had some leeway about it, but it wasn’t really a question of whether I could get away with not saying anything. Even on that first day I figured I’d end up missing some of the end of the school year, and it was only a few days before I learned I’d be missing graduation. They’d notice I wasn’t there.

The thing is, though, that when you tell someone bad news, you also have to handle their emotions about it. They’re going to respond, because we’re taught that the right thing is to respond, even if we don’t necessarily have a good thing to say. It’s like how we ask “How are you?” when we greet someone, even when that’s actually not a good question. Did every nurse ask me that through every appointment? Yes, except for the one I told not to before she could do more than say hello. And that felt rude, because it’s just what people say.

So that was in my mind as I figured out how, exactly, to do this. I sent texts to people I usually text, and then came up with this post for Facebook:

Hey everyone, this is a PSA to get your screenings. I had my first mammogram 15 days ago – they don’t push it at 40 anymore, but with my family history, I figured “Better safe than sorry.”

Then I had an ultrasound 11 days ago, and a biopsy 4 days ago. Today I found out I have breast cancer but, because of the mammogram, they caught it early. We’re working on the treatment plan but, if you happen to think I’m distracted or more emotional than usual, now you know why.

You don’t have to comment. It’s hard enough to find words, and I doubt I have the energy to respond to everyone. You can just hit that “care” emoji and we’ll know the entire conversation that happened between us. Thanks for caring.

Remember, this was a Friday night before a long weekend. I figured I’d be able to keep track of who reacted to it and trace how far it would spread. I wouldn’t have to say anything on Tuesday at school, because they’d all already know, and I wouldn’t have to force students to process their initial reaction in public, in real time. That was my brilliant plan.

Ope.

Partway through first hour, a student turned to me and asked if I was looking forward to summer vacation. That’s when I realized that I’d have to say something, after all. It’s really hard to find the proper balance of “I have cancer” and “But there’s like a 95% chance I’m not going to die.” The main concern with students is if they’re going to have a sub, and who the sub’s going to be. On Tuesday I didn’t know if and when they’d have one, but it was a good thing I’d said something because I came back on Wednesday to say well actually you’ll have a sub tomorrow and Friday.

Sometimes you can delegate someone to do the telling. I asked the principal to tell the seniors, considering the speed of my travel plans and the fact that there was no way I’d be able to tell them I was missing their graduation. That was a situation I could anticipate, and at least I did have someone who was willing to do it. But the thing is … it doesn’t end.

Every person you see for the first time after your diagnosis is a potential land mine. Even if a student’s mom had liked my post, I might run into the dad at the grocery store, and he wouldn’t know. When I scheduled the hot pink dye job with my hairdresser, I put a note in the appointment request. A friend asked if she could announce it at church and ask for prayers, maybe not saying why, and then my mom decided to announce it as well, with the full news. She said there were gasps, but then a lot of people got over the initial reaction, and she didn’t have to keep saying it.

It’s not foolproof, though. I was downstate for treatment until right before school started, which means I missed our all-school professional development. One teacher turned to another and asked where I was, so she had to tell him. It’s just a law of the universe, I guess: the one time you hope gossip will get there before you do, it has lead shoes.

And honestly, it just doesn’t end. I had a dentist appointment in the middle of everything and had to tell both the hygienist and the dentist. Even some of the medical calls from people who know full well what’s going on ask you to explain it in your own words, and you have to say it again. I told my students on the first day of school this year, explaining it’s not a secret and I hope it doesn’t impact them much, but yeah, some of my follow-up appointments mean certain hours need subs. The students in the health careers courses had more questions, which I was happy to answer, but mostly it’s died down.

Mostly. Until I once again run into someone new—say, someone who’s an occasional member of the weekly writing group and hasn’t stopped by since spring—and have to go through it all again.

Okay, I know this is a bit ironic

But writing isn’t telling. I don’t have to watch you react and process in real time when I talk about my experience or do the “I was diagnosed with cancer earlier this year” confession. Because yes, it feels like a confession. It’s a total downer, and you don’t really want to make other people think about cancer, and who it could affect and how it could be them. Except, if we don’t talk about it, then people don’t get screenings and, when they find out it is affecting them, it’s so much further along.

The thing about emotions surrounding cancer, though, is that there are a lot of them. There are, of course, more posts to come, but in the meantime cuddle in your coziest blanket, sip your favorite fall drink, and memento vivere.

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A Millennial’s Guide to Breast Cancer: After the Last Day

On the last day of radiation treatment, one of the techs asked me a very important question: was Duck with me? He’d met Duck on the first day, when I took the photo of the room, so Duck had to be there to ring the bell.

Patients undergoing treatment like chemotherapy or radiation ring the bell on their last day to signify that it’s over. It’s apparently a fairly recent tradition, just under 30 years old, and has its roots in the Navy: one of the reasons to ring it is to celebrate a major accomplishment. Admiral Irve Charles LeMoyne is credited with being the first person to use a bell for cancer treatment.

Mark time

The last day of treatment is a very specific date and a very clear ending. It’s a day we look forward to because it means this part is going to be over. It’s the end of the active treatment, the flurry of appointments and procedures and hospital gowns that may or may not be missing some of their ties. At the end of radiation it means not having to come back tomorrow, even if tomorrow’s a weekday. Even knowing that side effects can still worsen after that last treatment, at least it is the last treatment. You won’t continue to actively do something to make it worse.

As humans we like stories, and what that really means is we like stories with endings. One of my three areas for comprehensive exams during my Ph.D. was narrative theory. Check out the initial definition from that page:

Narrative theory starts from the assumption that narrative is a basic human strategy for coming to terms with fundamental elements of our experience, such as time, process, and change.

There’s just no way to tell about our experiences except to put them into a narrative. Anything with cause and effect is a narrative: the app says it’s going to rain later, so I should take an umbrella. The bus was late, so I ended up walking to work. We use narratives to talk about real events and imagined events, and both of these are ways of making sense of the world.

Think about your favorite book. It’s divided in so many different ways. There are pages, which just happen because of how many words can fit on them, but there are also chapters, where parts of a page are purposefully left blank. You have to turn the page to see what happens next. There can also be scene breaks within a chapter, denoted by a blank line – blankness again, like a visual cue to rest – or maybe a cute little symbol. (Apparently that’s called a dinkus. I learned something today.) There’s also a beginning and end to the whole book. It has to start somewhere, and it ends somewhere. Even Stephen King’s heftiest tomes finally come to a close.

You see these choices when you’re watching movies, shows, or documentaries, too. These are the moments when, back in the day, the network would cut away for ads, or the points where viewers would have to wait a whole week to find out what happens next. Maybe there’s even a recap at the start of the next episode, in case you forgot what happened or you missed a week. Today we binge as we please, but our narratives are still set up with these various arcs and pausing points.

When “The End” isn’t the end

Ringing the bell at the end of treatment feels like the end of something. We’d absolutely love it to be the absolute end of us thinking about cancer, much less having to deal with it ever again. A lot of people in my life seemed to think of it that way, too: oh, that’s over. She had cancer, but it’s gone. Go back to your lives, citizens.

I’ve barely begun to scratch the surface of cancer’s emotional toll. This has all been the basic survival mode recitation. This happens, then this happens, then this. I’m still not going to get into the emotional (in this post, at least) but even with just the facts, I can tell you that ringing the bell isn’t the last part.

There is a short break where your focus is on recovering from treatment. Ringing the bell is an emotional day because of all the symbolism and expectations around it. My parents and husband came with me, and my husband made sure to film it because his parents and others wanted to see me ring the bell. It was honestly kind of stressful because of all of those expectations and I wasn’t sure what my emotions would be doing at that point. Even the techs came out to clap, but then I basically went to bed and collapsed.

This is the point where we have to remember a lot of what we’ve learned about breast cancer. One of the first tests tells us the hormone receptor status of the tumor: how many colors of cat food will my little old lady eat? And one of the later tests is the oncotype dx, which tells us how tenacious the cancer is, and how likely it is to return. Based on those results, your doctor might prescribe hormone therapy.

In my case, I was prescribed Tamoxifen, and right away I’ll suggest you don’t read about all the possible side effects. It’s a selective estrogen receptor modulator (SERM) which stops estrogen from interacting with any place, benign or cancerous, that’s receptive to estrogen. In other words, this stops Van Go from eating one of the colors of cat food. If there are any cancer cells left after treatment, they should starve.

I’ll be on Tamoxifen for 5-10 years, and that’s part of the reason why the list of potential side effects is so long. They have to list anything that happened to anyone while they were on the drug. Some of them are common, like hot flashes and irritability, and some are rare. My sister-in-law, for example, had a side effect seen in less than 1% of people who are on tamoxifen, so she’s an unlucky outlier.

What this means, though, is that breast cancer survivors still have to think about their cancer at least once a day. Some have to take Tamoxifen twice a day, and some have more medications depending on their doctors’ recommendations. It’s a conscious, daily act for me, and then the hot flashes come whenever they feel like, and they’re just another reminder of what I went through.

Then there are the follow-up appointments. The surgeon needs to check on you at least twice, and I’ve had two appointments with my medical oncologist to start the hormone therapy and then check in to see how well I’m handling it. I’ve got another follow-up scheduled with the radiation oncologist later this year, and there’ll be one early next year where I have to go for a mammogram again. Considering how my very first mammogram found cancer, I can’t say I’m entirely looking forward to that experience.

No Evidence of Disease

I didn’t know I had cancer until the scan showed it, so it’s hard for me to think that I flat-out don’t have cancer now. The pathology report says my lymph nodes were clear and the margins were good, and the oncotype dx gives me a very low chance of recurrence with radiation and hormone therapy, but it happened once. I already got the fuzzy end of the lollipop. There’s no guarantee I won’t get it again.

My next post will shift toward managing some of the emotions surrounding cancer, but in the meantime, I have a request. I’m committing to knitting every day in November to raise money for the American Cancer Society, and I’d love it if you donated to support this cause. Obviously this is a cause very important to me, and I’m just getting my energy back after treatment, so knitting every day will be both a joy and a triumph. The scarf I’m wearing to ring the bell is one I knit early on in my treatment, after my diagnosis.

Memento vivere, friends, and take a moment to do something good.

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A Millennial’s Guide to Breast Cancer: Translating Medicalese

Missed the first post? Read it here.

One of the things I learned this year (one of many I’d be fine not knowing, thanks) is that documents can hit your online patient portal hours before your primary care provider sees them. I knew that, if I logged in and saw the results there, I’d have to deal with them on my own without her input and guidance.

Of course I looked. Granted, I did have my parents to fall back on if there was information on the pathology report that I didn’t understand, but honestly that first “carcinoma” was enough. What else did I need to know?

The initial pathology report actually has a lot of information on it. It doesn’t have everything—people will want to know your stage as soon as you tell them you have cancer, but you don’t get that information until after the surgery—but it has a lot. Your doctors will go over what things mean specifically for you, tailored to your results, but this is a basic overview of the information available on the initial report.

Invasive vs. in situ

This designation is an either/or: if the cancer isn’t invasive, it’s in situ. The Latin means “in place,” so an in situ carcinoma hasn’t spread beyond where it started. “Invasive” means the cancer has spread beyond the original site into the surrounding tissue. It sounds scary, but most breast cancers found are invasive. (Okay, it’s still scary, but the fact that it’s common means the medical field knows how to treat it, and a cancer labeled “invasive” can still end up being a Stage 1 in the end.)

Ductal vs lobular

This one indicates where the cancer was found. If it’s ductal, then it’s in the milk ducts. Lobular cancer was found in the lobules, which produce breast milk. The location of the cancer helps guide treatment.

Histologic Grade

This section has a lot of data and a lot of numbers, but the final one—the cancer’s grade—indicates how quickly the cancer is spreading and how different the cancer cells look from normal cells. It’s like golf, so you’d like to see lower numbers here. A Grade 1 is slow-growing, less likely to spread, and has cells that look close to normal cells. Grade 3 looks very different from normal cells and has a potential to grow and spread faster. This information will also help guide your treatment.

Hormone Receptor Status

Breast cancer can be “receptive” to three main hormones. If it’s receptive, then that hormone acts like a key turning in a lock and starting an engine: that specific hormone causes the cancer to become active. My surgeon had a whole speech about it with hand gestures, but I’m going to make this into a metaphor about my cat.

Van Go was a little old lady (she had a crumpled ear, which was why the Humane Society gave her that name) who was very particular about cat food. She preferred dry food to wet because she was a contrary cat, and she only ate specific colors of the dry. After Van Go was done eating, there’d be a little pile of the rejected color, separated out from the two colors she’d eaten. Van Go was receptive to two colors of cat food, but not the third.

The two colors she did eat fueled her for her little old lady adventures. If, for some reason, we’d decided to go through the bag and remove those two colors, she would have starved. Those were her food, and she ignored the third color. Van Go was a cat and not a tumor, but you get the picture. (In case you’re concerned, she lived a very long and happy life to an age the vet could only estimate as “19+” and she was always full of purrs and head bonks and her two favorite colors of crunchy food.)

If a tumor is receptive to a hormone, then part of the treatment can involve the reduction of that hormone. We’ll get to hormone therapy later, but yes, suppression of estrogen leads to hot flashes. This is your cue to send the cancer survivors in your life their favorite chocolates.

And finally, a note on the size estimate: the report will include an estimate of the largest size in all three dimensions, but it is only an estimate. It’s not uncommon for the final measurements after surgery to be slightly larger than this initial report. In my case the estimates different from the final by 2mm, so it’s not a huge difference, but it was something more than one friend warned me about, so I’m passing that along, too.

Information overload

Already we can see that even just this initial pathology report is full of data and overwhelming. The diagnosis is already individualized at these different levels, depending on where the cancer started, how much it’s already spread, how different the cells are, how likely it will continue to grow and spread, and what fuels it. All of these answers helps the team of doctors make their plan of attack so they can remove the cancer and take the most efficient steps to decrease the chances of it ever coming back.

At this point, though, right at the diagnosis, it can feel like those are all just tiny details. The main point is that, after all those scans and the core needle biopsy, you can’t just breathe a sign of relief because it was a false alarm. You have to shift your plans and, at some level, even your perception of self. You’re not a healthy person anymore. You have cancer.

This is also the moment where you start having to decide what to tell other people, or even if you want to tell them anything at all. That’s a very personal decision, and I’ve known people who’ve made choices all the way across the gradient from making it public to only informing those who absolutely need to know. My next post will discuss information, both getting and disseminating, in more detail. For now, though, fix yourself your favorite drink—make it a pumpkin spice if that’s your pleasure—and memento vivere.

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