RebeccaFrostWrites

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.

A Millennial’s Guide to Cancer – all posts

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.

A Millennial’s Guide to Breast Cancer – all posts

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.

A Millennial’s Guide to Breast Cancer – all posts

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.

A Millennial’s Guide to Breast Cancer – all posts

A Millennial’s Guide to Breast Cancer: Hulk Powers, Activate!

My mom is so not the kind of person you’d expect to have tattoos. We’re not entirely in agreement about how many she has. She says three, because there are three specific dots, but they’re all part of the same thing. I was going to count mine as one, except they don’t give you dots for radiation anymore. Honestly I was a bit disappointed, but I’m paying my tattoo dealer to give me my tenth one soon enough.

Once you get your oncotype dx score and know that radiation’s your next step, it doesn’t happen as quickly as you’d like. Seriously, don’t these people know you have cancer? I say that half-joking, but seriously, the waiting can be aggravating. You can try to reason with yourself that hey, the surgery’s over and your lymph nodes were clear, so technically you should be cancer-free at this point, or look, self, there are plenty of people at the cancer center who seem to be in more dire straits, but it doesn’t always work. You want things to go as quickly as possible so you can get back to normal, whatever that means for you now.

It’s not actually that simple.

Meet your radiation oncologist

The first step is to once again meet some new people. My radiation oncologist’s nurse started us off, and she told us she was going to talk like I’d already decided I’d do the radiation even though at that point apparently I hadn’t officially made that choice yet. I told her that I had, and I’d actually already scheduled the simulation, and then she got down to it.

There are a lot of risks with radiation. Some side effects are common and some are rare. Some are short-lived and some don’t show up for a while after. The nurse talked us through the usual culprits, including skin irritation and exhaustion, and the radiation oncologist covered some of the more serious possible outcomes.

They also talked us through what I should do to help prevent these side effects. They gave me an ointment to use twice a day, starting after my first radiation appointment and continuing until two weeks after my last one. Since I was a candidate for Accelerated Partial Breast Irradiation, I only needed five treatment sessions and the side effects might not show up until after they were over, or might worsen for a bit before they got better. I also got a prescription for a steroid cream to use once a day for the same time span.

Enter the simulation

After the initial appointment, once you’ve officially decided to get radiation, you get an appointment for the simulation. This takes place with a CT scan instead of the radiation machine. Here’s Duck posing before my simulation:

Duck preparing to enter the holodeck. (He didn’t quite grasp what “simulation” means in this context.)

The green thing he’s sitting on is the knee rest. The table under that sheet is hard plastic, and part of the simulation is adding and subtracting various supports and things until you get a position that feels like you can handle it. Even though each radiation session is a matter of minutes, the schedule can be daily, and the repetition of the same position over and over can be rough on your body.

For breast cancer radiation, you’re posed with one hand over your head to give the machine the most direct access to the proper tissue. The tech adds wax and other indicators to the visible landmarks, which basically means using wax and BB stickers to your scar and whatever else they’re going to use to line you up. The CT won’t see your scar, but it can see the things they add. They want to make sure that you’re in exactly the same position every time you go for a scan, so the radiation hits exactly what they want it to hit and nothing else.

Back in 2009, this was where they gave my mom her three tattoo dots to help with alignment. These days there’s a sort of bean bag thing under the sheet and, once you’re in position, they suck the air out of it and mold it to your upper torso. This helped me get into exactly the same position for every treatment. I think it looked kind of like a potato chip. Once my treatment was over, they just open it back up and it’s good to go for the next patient. You can see the green lasers in this shot, too, since they’re another tool they use to get you properly lined up.

The CT is very close to your face, much closer than the actual radiation machine, so if you can get through the stimulation without feeling claustrophobic, you’re good to go. Once they had me positioned on the table the way they liked, with me as comfortable as possible all things considered, they did two scans. The first was with me breathing normally, and the second had me holding my breath for the duration of the scan. Holding your breath lifts the tissue away from things like your heart and your lungs, which they want to avoid irradiating as much as possible.

Once the two scans were done, I got dressed again and waited to get my treatment schedule. The tech wanted to know my preferred schedule, so I asked to start as soon as possible and have my treatments early in the day to get them over with. She was able to get four of them at exactly the same time, just to help me remember when they were. Then, because the scans had to go to the dosimetrists who calculate exactly how the machine will move to make sure the proper area is targeted, there’s a gap of a week to twelve days.

To start, press any key

The Cowell Family Cancer Center schedules radiation appointments at 15-minute intervals, but the actual treatment doesn’t take that long. You quickly get into a routine: show up, check in, go to the gowned waiting room to get changed, and either wait or head right to the radiation room if they tell you they’re ready for you. It looks a little different from the simulation, but the table setup is exactly the same.

Duck trying to decide if he wants to be the Hulk or Spider-Man.

Each day there were three techs, but only one of them was there for all five of my treatments. They get you onto the table and make sure your hands, for example, are where they were during the simulation. Once you’re lined up as well as they can do it with the eye, they step out, the doors close, and the machine starts moving around you. Honestly it kept making me think of EVE in Wall-E, if her paddle-like arms were a lot bigger.

They traded off saying “When you’re ready, take a deep breath in” and “Breathe,” because they have to repeat it a lot during each session. The first couple times are when the machine checks your position, and the table shifts to put you in the exact position the dosimetrists calculated. Once the radiation starts, the machine rotates around you during the periods when you’re holding your breath. This keeps the former tumor location at the center of the arc while making sure that it’s not concentrating too long on any one patch of skin.

They keep an eye on you from the other room so if you need to breathe, you can, and they’ll stop the machine where it is. They’ll also tell you if you have to breathe in a little more, or let a little out, which honestly just convinces you that you’ve completely forgotten how to hold your breath. Seriously it gets really hard to judge how much you’ve sucked in. Did I hold it like this during the simulation, or like this?

The machine didn’t always move the same way for each appointment, or for the same about of time. The first couple days it seemed to make the same arc back and forth the same number of times, but it does change. Once the red lights go off and the door starts opening, though, today’s treatment is over. It’s time to get dressed and then use the Dermaphor as soon as you can, since you don’t want to use any kind of lotions or deodorants before the treatment—they can mess with the way the different scans and treatments react to your skin.

I’m a bit of a delicate flower, because I felt some of the side effects after my first treatment. My skin turned a bit red and it felt tight, like a sunburn, but the ointment and steroid helped. If it had gotten worse, they would have given me other measures to help calm it down. I met with my radiation oncologist after the fourth treatment, and she said that, if more sever skin reactions are going to happen, they usually show up by then. The Dermaphor is similar to Aquaphor and can be used as needed, so when I started to notice the tightness and irritation, I could apply some more and that took care of things. (Note, though, that you need to use both the ointment and the steroid over the entire quadrant of your torso, and it can stain the fabric that touches it.)

Ring-a-ding-ding

After your final radiation treatment, you get to participate in the tradition of ringing the bell. It’s officially over! The initial, most active, and most obvious phase of your cancer treatment is over. I rang the bell 95 days after my diagnosis, and man, those were a long 95 days. You want to celebrate—or maybe just go take a long, long nap—because hey, it’s a big moment, except … well. This whole thing sounds a bit ominous, doesn’t it?

Next time we’ll talk about what happens after the bell. For now, go do something kind for someone else, whether or not they know you’re the one who did it. Memento vivere.

A Millennial’s Guide to Breast Cancer – all posts

A Millennial’s Guide to Breast Cancer: Can I Get the Final Answer?

I received my cancer diagnosis on a Friday near the end of the school year. I teach at a small rural high school, and they do something different from my own high school: the seniors finish before the rest of the grades. It ended up being the day the seniors took their last final exams, less than a week before graduation. Maybe it was denial or the minute-by-minute coping you enter into after such a diagnosis, but graduation was the first thing that I real felt cancer take from me. Because we’re in such a rural area, and because my parents live near a larger hospital downstate, I ended up meeting my surgeon on graduation day and watching the ceremony streamed on Facebook.

The timing meant that my surgery and at least a chunk of the following treatment would take place during summer break. On the one hand, this was good because it meant I wasn’t missing class and didn’t have to worry about sub plans and all the rest. On the other, I didn’t get either a summer or a break. But, back in May, I had no idea exactly how long treatment would take.

Duck Cancer overseeing my high school English classroom

Because of others’ experience, I knew that the bare minimum would be surgery and radiation. Another reason to transfer all of my care downstate was because there’s no local radiation. The individual treatments are short, only a matter of minutes, but they can be daily, and the closest center is still more than 60 miles from where I live. Practically moving back in with my parents for the summer wasn’t really top on my list of things to do, but they used to work at the hospital. Their house is less than a mile from the cancer treatment center. I just had no idea how long I’d be there.

A (very brief history) of breast cancer treatment

Back in the day, but still recent enough to be in living memory, patients went in for breast cancer surgery without knowing what the procedure would be. They could tell their diagnosis as soon as they woke up from the anesthesia: if both breasts were still present, the lump was benign. Cancer meant an immediate mastectomy.

It might have been effective as far as making sure the cancer didn’t spread, but this had a negative effect on the patients. It’s jarring enough waking up to see how much a lumpectomy has changed the body you’ve known for years. One of the items I was given at the hospital is a recovery camisole which not only had pockets for drains in case I had those after surgery, but comes with two breast forms that can be put in the top pockets. The drain pockets can be medically necessary; the breast forms can be mentally or emotionally necessary.

When they started doing lumpectomies, though, the recurrence rate was too high for comfort. It seemed like it should have been a good compromise between the 0 and 100 end points of doing nothing and doing a full mastectomy, but it wasn’t until they added in radiation treatments that the recurrence rates lowered enough to be acceptable. Even patients who have a double mastectomy can benefit from radiation treatment, so, from the get-go, I knew that there’d be radiation. What I didn’t know, and what you don’t find out until after surgery, is whether I needed chemo first.

Another pathology report

The first thing that helps say one way or another is the post-surgery pathology report. There were two things my mom and I skimmed for as soon as I got it: whether both the margins and the sentinel nodes were clean.

Margins refer to the tissue that’s been removed during surgery. Ideally the tumor is in the middle, surrounded on all sides by healthy tissue. If this is the case, the margins are clean, or noncancerous. If margins aren’t clean, that means some of the tumor is left inside and needs to be removed with further surgery. The goal is to eliminate every possible cancer cell, because even one can start the whole thing up again.

The sentinel node biopsy is a check to see if the cancer was trying to spread. The lymphatic systems deals with filtering and draining bodily fluids, so they’d catch any cancer that comes their way. My surgeon said the standard procedure is to biopsy the lymph nodes first before moving to the lumpectomy with the idea of moving from a non-cancerous area to a cancerous. He also shrugged and said he wasn’t entirely sure it mattered, but it’s better to be safe than sorry.

It was about two weeks after my surgery that my dad pointed out some of the information we’d skimmed over: exactly how much tissue had been removed, both by size and weight. Remember he’s a gynecologist, so he had some more insight than most. Hot tip: maybe just skim your pathology report for your margins and biopsy results at first. A lumpectomy sounds like it should be nice and small, but once you start actually picturing the size of the wound left inside … let’s just say there’s a reason tenderness and swelling can last 3-6 months.

Clean lymph nodes are a good indication, but they’re not the final say. For that, your oncologist needs the results of another test.

Another number

I spent almost two months wondering if I’d need chemotherapy which, for me, meant the specific “Will I make it back for the first day of school?” question. That was my mental and emotional touch point. If I could do that, then cancer wouldn’t have ruined my life. It might—and did—suck, and I knew I’d have to eventually deal with the various consequences of my lost summer, but being back for “my kids” was the important part. The will-I-or-won’t-I chemo question was answered when I finally got the results of a test called the oncotype dx.

The result itself comes in a number from 0 to 100. It’s called a recurrence score, and even though it looks like it might be a percentage, it’s not. Your percentage of recurrence is different from your oncotype dx, but it’s included on the same document. Mine told me my recurrence chances if I only did hormone therapy, and if I did hormone therapy plus radiation.

The number you’re hoping for is different if you’re pre- or post-menopausal. Since I’m pre-menopausal, my oncologist said we wanted a number of 18 or lower. That indicates that chemotherapy would not be helpful in treating my cancer. If the number is 26 or higher, then a more aggressive form of treatment is recommended, including chemotherapy. If it’s in the middle, then there are charts to say how likely it is for chemo to help, and that’s more of a discussion with your doctor.

I should note that every treatment plan was presented to be as a suggestion, from the lumpectomy to radiation to hormone therapy. At one point when talking about how to proceed, my surgeon said “We discussed the lumpectomy.” I nodded, which prompted him to say, “No, I was asking you if that’s what we’re doing.” The pendulum’s swung a long way from being wheeled into the operating room and having no idea—and no say—in what’s going to happen to you.

The oncotype dx results provide a lot of information to help you and your doctor decide what treatment comes next. When mine came back as 11, we all breathed a sigh of relief. It was clearly low enough that I wouldn’t need chemo. (If any readers did go through chemotherapy and would like to write a guest blog post on the experience, please reach out.)

The end of the beginning

My oncotype dx result meant my next appointment was with the radiation oncologist to determine exactly what my treatment course would look like. I’ll go over radiation in my next post, but for now, do something to relax. Maybe take a nap. You deserve it. Memento vivere.

A Millennial’s Guide to Breast Cancer: Tumor Eviction Day

Part of the absolute deluge of information I received from my first meeting with my nurse navigator came in the form of a coaster-sized disk on her desk. This was before I had Duck Cancer, so I pulled out my usual little Instagram star, secret kitten, and took a photo of it so I could share it with other people. This is the sample of the SCOUT, the reflector device put in place before a lumpectomy.

Savi SCOUT with secret kitten for scale.

I realize that “secret kitten for scale” really only works if you know how big secret kitten is to start with. Most of my other photos of secret kitten have to do with knitting, museums, or zoos, so here she is next to a full-size lion skull.

Now that you know the basic size of a SCOUT … what the heck is it?

Hide and seek

Once your tumor has been found, each successive tech or doctor needs to find it again. Depending on how you’re lying or standing, and how the tissue’s being manipulated at the time (squished in a mammogram, for example) it can seem to be in a different spot. This also depends on the size of your breast and the depth of the tumor. I have large breasts, and with my tumor in the bottom third of the tissue, various techs had to figure out the notes left by previous techs in order to find it again.

After the core needle biopsy, the radiologist inserted a clip into the suspicious site. If they’d known it was a tumor at the time, they would’ve just left the SCOUT instead, but the reflector can’t be left in for the rest of your life. The clip shows up on x-rays and ultrasounds just fine, but it won’t react to the magnets in an MRI, so it can remain. The best-case scenario means having a clip for the rest of your life, showing that this suspicious spot has been checked and was fine.

The difficulty comes in locating the tumor in the operating room. Back in the day—which wasn’t actually all that long ago; my mom had breast cancer in 2009 and this was what she had—you’d go get an ultrasound on the morning of your surgery and have a wire placed in your breast with the end sticking out. Honestly the mental image makes me cringe, but she said it wasn’t such a big deal. I think they gave her Valium beforehand, so maybe that had something to do with it. Then Dad drove her to the hospital where they continued with the rest of preparation. Because the wire does stick out, it has to be done the morning of surgery.

The SCOUT, which I honestly just called boob radar when I explained it to people, gets put into the tumor sometime before surgery. Mine was a little less than a week before. It’s quite similar to the core needle biopsy procedure, except it’s just leaving something behind instead of taking tissue samples out. The samples themselves are small, but honestly I felt such a difference between the two procedures.

The ultrasound tech first locates the clip, and the radiologist preps you for the insertion. You’re awake and it’s just there in the room with the ultrasound, but it’s still pretty intense as far as cleaning and draping. Since something’s piercing your skin, they want to make sure they’re not introducing an infection. The only thing they want to leave behind is the SCOUT.

Full disclosure: I did not look at the size of the needle. I kept my eyes on the ceiling and prattled on about Jack the Ripper. I don’t think they were actually interested in my research, but they keep track of how you’re handling it based on how you sound. You’re numbed, which happens in a sort of series of deeper and deeper shots, but there’s still a feeling of pressure and the idea that you’re waiting for it to hurt.

Once the SCOUT is inserted, you just put your top back on long enough to head over to the mammogram again. They don’t squish it as much as usual (I have a very active imagination, so I just asked them to reassure me even though they do this all the time) but they need to make sure the SCOUT is in the right spot. It’s a sort of sleeper agent, though, and won’t be activated until you’re in the operating room, so your cyborg dreams might have to be curtailed. Then you go about the rest of your day.

Further preparations

When you get scheduled for surgery, you’re just given the day. They’ll tell you what number to call the day before (or the Friday before, if your surgery’s on a Monday) so you know when you actually have to show up at the hospital. Remember you’ll need at least one person with you, since you can’t drive yourself home after.

There are a few things you’ll be asked to do prior to surgery day. I was given a bottle of soap and told to use it for three showers before my surgery: the two days before, and the morning of. It comes with instructions on how much to use and how much to wash with it—in my case, everything from the neck down. You can’t shave during those showers, since they don’t want to risk nicks and infection. The soap is definitely not your usual skin-soothing, floral-scented body wash, but you want to make sure you use it following instructions. You’ll need fresh clean sheets and entirely clean clothes after each shower, too, because it’s all about limiting the chances of infection.

You’ll also be given instructions on when to stop eating and drinking prior to surgery. This is to make sure your stomach is empty so you don’t aspirate the contents during surgery. Anesthesia suppresses certain reflexes, like the gag reflex. Remember how you had to worry about your college roommate passing out drunk, vomiting, and choking on it? It’s the same basic principle here. Seriously, follow all the rules and restrictions you’re given, to the letter, even if they don’t make immediate sense. If you Google, there’s always a reason, and usually that reason is “So the patient doesn’t die.”

The big day

You’ll be asked to show up at the hospital quite a while before surgery because there’s even more prep. My instructions said that I might be limited to two people waiting for me, so we determined beforehand who’d leave the waiting room if the limit was enforced. I checked in at the front desk and was told where to go, and then again in the waiting room. The receptionist wrote down the names, relationships, and phone numbers of who I had with me. Then we waited for me to be called back.

The nurse asked if I’d followed the showering and eating instructions, and then explained that she had a set of six large medicated wipes for another sponge bath, just in case. She told me how to use them very specifically before I changed into the hospital gown, and then another nurse came in and used the last one on my back. (Weird, because your breasts aren’t on your back, right? But this is how serious they are about not introducing an infection.)

At this time I was also offered painkillers. I’d never had Valium before, so I opted to half of what she offered. Spoiler alert: take them all. Just go for it. You can be as sleepy and out of it as you like, because the moment that matters is when they come at you with four needles around your areola. She also put numbing cream on in preparation for those needles, since it had to be on for at least half an hour.

This was also when the nurse inserted an IV. She said she could move it if it wasn’t comfortable, and I did end up asking her to. I’d brought my knitting, because I knew there would be a lot of waiting, and the first position didn’t let me knit comfortably.

At this point, while we waited for my radioactive tracer appointment, she went to invite any of my guests to come back and sit with me. My husband and mom came back, and my dad and mother-in-law stayed in the waiting room. While I was taken down for the tracer injections, they just waited in my pre-op room.

The radioactive tracer injections don’t take long, but this is why I highly suggest you take all the painkillers they offer you. Obviously it’s not fun to have needles in your breast tissue, but it’s not the same numbing here was there was for the SCOUT placement. The tracer, along with blue dye, is used to help the surgeon find the sentinel lymph node during surgery. This is the lymph node that has the job of draining the breast and, if the cancer is trying to spread, then cancerous cells will be found in the lymph node. After the injection and an initial scan, it was back to my room.

If you’re not the first surgery of the day, then your surgery might not happen at the scheduled time. It can be frustrating, because it’s your one big thing happening that day, and you might be having all kinds of emotions waiting for it. On top of that, you’ll be hungry and thirsty. Remind yourself that everyone else wants you in that operating room just as much as you do, and they don’t like delays, either. This is why I brought my knitting and yeah, okay, having a clearer head maybe helped with passing the time.

Duck Cancer supervising my pre-op knitting

At some point your surgeon will stop in to check in with you and answer any last-minute questions. The anesthetist and anesthesiologist will stop by, too, and probably ask you a lot of the same questions you’ve already answered, just to be sure that they’re prepared. They’ll ask about smoking and drinking habits because of the negative impacts those can have on the anesthesia process, so answer truthfully.

Once they take you from the pre-op room to the operating room, things move fast. You’re basically swarmed with people getting you set up, but you take deep breaths of oxygen before the gas switches over and then you’re out.

Waking up

The two things I remember about coming around in the recovery room was how badly my throat hurt—it’s a common side effect of the breathing tube used during surgery—and how I just wanted to rub my face like I’d had a long nap. The nurse kept telling me not to, because apparently your blinking reflex doesn’t work so well right after surgery. There was a clock in my direct line of sight and it didn’t take me too long to feel more awake. She handed me my glasses and got me some juice, then asked if I was ready to get dressed. I honestly wasn’t sure if I was, but said I’d try.

I was able to dress just fine on my own. I wore loose clothes and a front-close bra. I’d picked the Lounge Bra from SheFit because I already had a couple different styles for working out. It turned out that it wasn’t the best choice because of where my incision ended up, but you won’t know where that’ll be until after it’s already done. I also had some bras from Yana Dee and I ended up buying a few more because the tenderness can last three to six months after surgery. They’re easy to step into and carefully pull up in the first few days after surgery.

Real talk here: it was shocking to look at my breast right after. The swelling made the divot all the more pronounced, and the scar was bigger than I thought. When you hear lumpectomy you think oh, just a tiny little bit gets removed, only enough to make sure the margins are clear, but that’s not the case. The pathology report you get after tells you exactly how much tissue was removed, but seeing it for the first time was a surprise.

I didn’t want to move my shoulder very much because the incision for the lymph node was in the armpit, but I was surprised at how not-terrible I felt physically. I did wonder if maybe I should’ve had them drive my Equinox instead of my dad’s giant truck when I had to get up into it, but I made it. I don’t remember much about the rest of that day, but I was awake for a long stretch in the middle of the night (anesthesia can affect your sleep schedule for a while after surgery) and felt okay enough to sit up and read for a while.

Tom Petty knows what’s up

After the surgery comes more waiting. There’s another pathology report, and something called an oncotype dx, but we’ll get to those next time. Even all these months later it’s exhausting to try to remember everything that happened on the day of my surgery, because so much goes on, with so many people. It’s all such a rush, but then … there’s more waiting. You may have heard that it’s the hardest part.

Try to spend some time with nature today. Touch grass or watch a rainstorm while you’re cozy inside with a hot drink. Memento vivere.

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A Millennial’s Guide to Breast Cancer: It Takes More Than a Village

At the end of the 2024-2025 school year, admin put a rubber duck in each of our mailboxes. They were accompanied by a paper entitled “Get the duck out of here!” and instructed us to take the ducks along on our summer adventures, photograph them, and submit those photos before we came back in August for professional development. I asked my principal if that meant I was supposed to get a picture of my duck with my surgeon. The guidance counselor jumped in with “Is he cute?”

After naming my new rubber friend Duck Cancer, I did not end up getting photographs of him with the people who helped me along my cancer journey. For one thing, so many of them were focused on the task at hand, and it felt weird explaining why I had a duck. For another, there were so many people. Oh so many people.

Every type of scan has its own technician, and every doctor has their own primary nurse, scheduler, and probably even more people that I didn’t have to meet. Trying to keep the people straight is a challenge of its own on top of all the information you get about test results and what’s happening next.

During and just after the diagnosis

Technicians will introduce themselves as they lead you back—and it’s almost impossible for them not to ask “How are you doing today?” even though uh. The answer is generally “Not so great, thanks”—but you’re probably not in a mental state to remember their names. (See “Not so great, thanks.”) I had different techs for my mammograms, but the same tech for both the ultrasound and the ultrasound guided core biopsy.

The radiologist was the one who read my initial scans, so I had his name on the reports before I met him during the core needle biopsy. I also spoke to multiple radiologists depending on the appointment. After my initial diagnosis, I had my care transferred to a downstate hospital, considering how rural and isolated the local hospital is. We’re glad to have it, but there aren’t the same kinds of doctors on staff or equipment as larger hospitals. The radiologist, for example, only comes to the local hospital one day a week, and they don’t have the equipment for radiation treatment.

After my diagnosis I had a very long, very busy day meeting a whole bunch of people: my surgeon, his nurses, his scheduler, and my nurse navigator. Each doctor comes with at least one nurse and a scheduler (although schedulers usually work for more than one doctor) and it can be a bit tricky keeping track of who to contact about what. That’s where the nurse navigator comes in.

After my first appointment with my surgeon, which lasted over an hour, I went right over to meet my nurse navigator and we walked for another two hours. It was a very, very long day. My nurse navigator is specifically a breast health coordinator and she’s stayed my point of contact even as first my surgeon and then my radiation oncologist signed off on my case.

The nurse navigator has access to all your information and is the person who can be pestered with calls or emails when you’re really not sure who to call. If it’s not an emergency and you have a question about what’s going on, the nurse navigator is the one to ask. During our first meeting I told mine that I’d probably never call her (I don’t like phone calls, remember) but I’ve emailed her with all kinds of questions. I haven’t heard back from this person—is that normal? What’s the direct line to call this specific person and should I do that tomorrow or give them another day or so? Did you get this information from another provider yet?

My nurse navigator started off by going over an enormous binder of information outlining the basic information about what breast cancer is and the most common treatments. She gave me a whole overview of all the steps because, even at that point, we didn’t know for sure what kind of surgery I’d be getting. It was a long discussion with a lot of options, and it was nice to meet her face-to-face before I needed to ask her any of my questions.

Part of the reason we didn’t know for sure what kind of surgery I’d be getting is because the next person I had to meet was the geneticist. Partly because of my age and partly because of my family history of various cancers, we all thought it would be a good idea to do genetic testing and figure out if I had any of the genes that meant my risk for breast cancer was higher than average. The American Cancer Society says 1 in 8 women will be diagnosed with breast cancer in her lifetime, which means each woman’s chance is about 13%. Someone with a BRCA1 gene mutation has a much higher risk, not just for breast cancer but for other cancers. The lifetime breast cancer risk jumps to 45%-85% and ovarian cancer from just over 1% to 39-46%. BRCA1, BRCA2, and other gene mutations also increase the chance of recurring cancer, so someone who has those mutations might consider a double mastectomy or other interventions over a lumpectomy. I had my blood drawn and sent off to be tested.

Meanwhile, a whole group of people got together to discuss my case at the Tuesday Tumor Board. They only meet once a week, so all of your paperwork has to be in order and present before they can discuss it. I was called in for another mammogram and ultrasound to clear up a shadowy area present in the original mammogram, and the scheduler bumped someone’s routine testing to make sure I could get mine in on Monday before the tumor board met … which meant meeting two more techs and another radiologist.

The tumor board is made up of a bunch of people, some you’ve already met and some you haven’t met yet, including your surgeon, geneticist, and the oncologists who will be involved in your case. I didn’t meet my medical oncologist until weeks after my surgery, but she was there. They all look at the scans, agree on the diagnosis, and make their initial treatment plans. After my genetic results came back and showed no known genetic mutations, we agreed to move forward with the lumpectomy and sentinel node biopsy. (More on what that means later—we’re still listing all the people.)

Pre-op and surgery day

Before the surgery, there’s another trip to see a radiologist and have a radar reflector implanted. (Again, more on that later). That means an ultrasound tech, a radiologist, and another mammogram tech afterward to make sure it’s in the right spot. For those keeping track at home, this was my third radiologist.

On the day of the surgery, there are pre-op nurses who help you get ready, another tech who takes you to get injected with the radioactive tracer that will help guide your surgeon to your sentinel nodes, the anesthesiologist, the anesthetist, your surgeon, a whole bunch of people behind masks who surround you in the operating room before you breathe in the gas, and the person waiting for when you wake up. That doesn’t even count the people you check in with at the main hospital entrance or the OR waiting room.

After surgery there are at least two more check-ins with your surgeon, which involves his nurse and his scheduler, and then the transfer to the next part of treatment.

Post-op with the oncologists

I met my medical oncologist a couple weeks after surgery, which—you guessed it—meant also meeting her main nurse and her scheduler. It was just the one meeting, though, because we had the results back that meant she could pass me directly to my radiation oncologist (with her own nurse and scheduler). After our initial appointment—there are a lot of initial appointments—came the simulation appointment for radiation.

The simulation is a CT Scan and I honestly can’t remember how many techs accompanied my radiation oncologist that day. There were at least two, but maybe three or four actually came in and introduced themselves. I was staring at the ceiling, so I don’t remember all their faces.

After the simulation there’s more behind-the-scenes work going on with the dosimetrists. I didn’t meet them, but there were at least two involved: one to calculate what my actual radiation plan looked like, and another to double-check the first’s work.

The radiation treatments themselves meant more techs. There were three each day, but only one was there for all five of the days I had treatment. They all helped me get set up and then traded off whose turn it was to say “When you’re ready, take a deep breath in” and “Breathe,” which happens multiple times a session.

And then it was back to my medical oncologist to discuss what hormone therapy I’ll be on for the next five or ten years. She’ll be in my life for at least that long.

And that’s just the people

It doesn’t explain what the radar procedure is, or why you need to be injected with radioactive dye, or why there’s a second part and not just “a lumpectomy.” In my next post I’ll cover the steps of the radar reflector insertion and a breakdown of what actually happens on surgery day. Until then, buy yourself a little treat—you deserve it—and memento vivere.

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A Millennial’s Guide to Breast Cancer: Let’s Talk it Over

I didn’t know what my ring tone sounded like until this spring. Most people don’t call me, and I figured that, if anyone did, they’d leave a message and I could call them back later. Once your number starts getting around to various medical professionals, you have to start answering the calls.

For one thing, you can’t always just call someone back. The number that shows up on the phone, usually labeled healthcare so at least you know it’s not spam, isn’t a direct line. Sometimes it gets you a menu, and other times it’s a recording informing you that this particular number is never answered. At least if you get the message (and listen to it or have a good transcription), you’ll have the direct number for the service in question and you can save it to your directory for future reference.

Other times you want to answer at the initial call because you want to get the next thing scheduled right now so you can plan things out. Even the soonest available appointment can often feel like it’s too far in the future (don’t these people know you have cancer?) so answering and getting that conversation going means making your wait time as short as possible. Honestly once you know there’s cancer in there somewhere, you just want it out.

It’s not just about answering your phone and keeping track of the information coming in, though. You’re not merely becoming the expert on your cancer and your treatment. You also have to immediately become a teacher.

“Oh, it’s going.”

Telling people you have cancer sucks. You’re just going about your day, someone hits you with the usual “Hey, how are you?” greeting and you have to make that decision: tell them? Don’t tell them and have them find out later? Duck into the nearest sewer grate and avoid them for the rest of your life?

I knew there was no way I’d be able to say it out loud to many people, but even once you’ve decided on texting, there are still so many questions. How much do you say? How do you even start? What order do you text people in? What if you miss someone important in the first round? Seriously all the logistics of trying to inform everyone you think feels like they deserve to be informed directly so you don’t offend them on top of sharing your cancer news is ridiculous. Like you shouldn’t really be concerned with propriety in the middle of all this, but hey, you’re going to live through it, so you’ll be potentially dealing with their hurt feelings for decades. Right?

At first it didn’t seem like such a big deal. I went ahead and drafted a text, just to get it down, and decided I’d just sent it to everyone. At that point, “everyone” was basically anyone who texted me on a semi-regular basis. The number wasn’t that large, so it was easy enough to do: copy, paste, send. Paste, send. Paste, send.

Not everybody chooses to make their diagnosis public, so that’s a personal decision, but I opted to write a Facebook post about the situation. Basically I decided I wanted to eliminate the awkward “How are you?” conversations as much as possible. It didn’t quite end up working the way I thought it would—I still had to tell all of my high school students, one class at a time—but it did help get the news out there. Part of that made it feel more real, so of course I wasn’t in denial or anything, and part of it was just the act of doing something when what I was really doing was waiting for a call from the surgeon’s scheduler. I had the news, and I had nothing pressing to do, so I told everyone.

Part of what I said in that initial post was that people didn’t have to respond. They could hit the heart react, and I’d know what they wanted to say. Again, this was a two part deal: I didn’t want to have to come up with a response to every single comment, and I didn’t want to force people to think of something to say.

What do you say when someone tells you they have cancer? I don’t have a right answer, but I do have a wrong one: the number of people who rushed to reassure me that I’d be fine was, uh … not reassuring. It felt dismissive, like they didn’t want to be bothered thinking about what I was going through and therefore decided that I had to be fine, so they wouldn’t have to worry about it. And honestly, I’d already gotten the wrong end of the odds with the cancer diagnosis. Who were they to say that the next step in the process would turn out sunny-side up?

This isn’t to say, of course, that I think all these people honestly felt this way. I think it’s simply hard to know what to say when this situation comes up, and the first instinct is to be reassuring. I would suggest, though, that all well-meaning reassuring people start practicing a variation on I’m here for you, no matter what comes next. Even relating a story of a friend’s or relative’s experience isn’t necessarily reassuring, because every cancer experience is different and, especially early on, there are just so many directions our lives could end up taking.

Over and over again

You’d think that telling people would get easier, but I don’t think it has. I just met up with someone for the first time since before my diagnosis and had to go through the whole story again as part of our catching up. I may be guilty of avoiding people on days when I simply don’t have the energy to go through it all again: telling someone. Dealing with their initial reaction. Usually reassuring them so they don’t have to feel bad. At times listening politely to advice that simply has no bearing on my situation. It’s a lot, okay?

I try to remember that it’s the first time for everyone I tell. They haven’t had to internalize this and make this a part of their everyday life. It’s not something anyone expects to hear from someone who seems to be healthy. But it’s still such process, and some days I just don’t have the energy to guide someone else through it after all the informing I’ve already done.

From the initial texts and Facebook post informing people of my diagnosis, things just got more complicated. There were updates to share after every appointment, and even though I tended to keep specifics to texts and only share more general updates on Facebook, more and more people crept into my to text list. I would leave an appointment, sometimes overwhelmed by more than an hour of information, and type up a summary and the next steps. I could copy and paste again, but as I kept pasting and sending, more people would respond. I’d have to go back and make sure I didn’t forget to send anyone the initial message, and then also make sure I’d responded to responses, at least with an emoji react. People who care want to know what’s going on, but man, it can snowball.

Most people are lucky and don’t know all the steps involved in getting a breast cancer diagnosis and proceeding with treatment. They are lucky people, but this just means a steeper learning curve. After I’d spent an hour or more—I think the record without a break was three hours, but I’ve had two appointments per day more than once—answering questions and getting things sorted out, I had to distill it into something that made sense for everyone who received my texts. Spoiler: it rarely did. Follow-up questions were the norm.

I had one person (a cancer survivor herself) offer to pass on the information to a branch of my support system, and that helped a lot. She did try to warn me about how overwhelming it would get, but it’s hard to imagine it at the beginning, and then you’re already stuck in your new “usual” procedures. Could I have changed things up? Sure, but it would’ve taken too much energy, and by that point I needed to save every spoon I could.

And again and again

Part of the overwhelming nature of a cancer diagnosis is the simple number of new people you meet. They all want to help, but you’re also kind of at the worst point in your life, so it’s hard to be grateful … especially when they’re coming at you yet again with something sharp. It also means explaining to other people the difference between similar-sounding titles, or why different appointments are necessary even though, yes, of course you know it feels like things are just being delayed. I’ll give an overview of all the different appointments and professionals in my next post, but until then, do something kind for yourself today. Memento vivere.

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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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