INFUSED (AGAIN).

Another day, another spell in the chemo chair!

Wait… what?!

Don’t worry; no bad news here. Last month I started a new maintenance treatment: Zometa, or zoledronic acid. I learned about it from a couple of my online cancer buddies who’ve also taken it after a similar diagnosis. Zometa is often prescribed to stage IV folks with bone mets (metastases) to slow or reduce damage to the bone, but it’s also been shown to help prevent bone mets from forming in the first place for early stagers like me. I brought it up with my oncologist a few months ago, and she said she’d also been considering offering it to me. She was happy to prescribe it if I wanted it. Did I ever!

My philosophy on preventative/maintenance treatments at this point is bring. it. on. I’m young, with plenty of years left (*crosses fingers; knocks on wood*). I want to give myself the best shot I can at a disease-free future. Zometa has few significant side effects and only needs to be given once every six months for two years. That’s an easy yes from me!

Yes, I was sitting right next to the trash can. Make of that what you will.

So that’s how I found myself back in the chemo chair for a 20-minute infusion in early July.

Well, not quite. There was an intermediate step: getting clearance from my dentist. Because I kinda-sorta exaggerated. Although Zometa doesn’t have too many common side effects, it has one rare but rather grim possible outcome: osteonecrosis of the jaw. Also known as your jawbone rotting away and dying from the inside out, potentially revealing bone fragments to the world at large. So that’s… cool. Anyway, my dentist OK’d the treatment because I don’t have any dental issues and/or need for dental surgery in the near future (*crosses fingers; knocks on wood*).

…and that’s how I found myself back in the chemo chair.

Well, not really “back,” because I received treatment at a different location from the one where I got chemo last year. (That location is closed due to pandemic-related staffing concerns. Yikes.) A very friendly nurse got my IV placed, and when he flushed it, I got that oh-so-familar tang in my mouth. He described it as licking a tin can, and he wasn’t wrong. It’s metallic, acrid, and extremely recognizable. The body is strange: I received chemo through a port, yet I always tasted the pre-infusion saline flush in my mouth. I get the same sensation and taste when a peripheral IV is flushed, and it brings me right back to those chemo feels.

Anyway, the infusion itself was not particularly eventful. The most exciting part was when the elderly woman next to me nodded off and made some very audible groans in her sleep. (She was a hoot, though—she heard my nurse explaining the Zometa infusion to me and asked, “Oh, are you a chemo virgin too?!” It was with a strange mix of pride and disbelief that I explained, no, I actually had chemo last year but I’m receiving a different infusion now. Like… what? What is my life? How did I get here?!)

After the infusion, I got my quarterly Lupron Butt Dart™ and was on my way. That night, the Zometa side effects set in: shivers, chills, headache, pounding heart, body aches. I’ve heard that most folks only get them after the first infusion, so we’ll see. They were fleeting and mostly dissipated by the following evening.

And thus ended my Zometa experience. Of course, the fun never ends, because I had my first post-active-treatment breast MRI last Friday, and I’ll meet with my surgeon on August 8 to go over the results. I’m feeling pretty Zen about it, though. My surgeon has warned me that MRIs are sensitive and might result in false positives, so I know it’s likely that I’ll have to get something biopsied in the years to come. It’s a price I’m willing to pay, because I’d rather know what’s going on than trust the less-accurate diagnostic abilities of a mammogram. Que sera, sera.

STORIES.

There’s a scary thing that happens, when you’re diagnosed with cancer.

Before cancer, you think you’re a rational person, someone who understands that life is short and that tragedy—a distracted driver; a clump of misbehaving cells—could strike at any moment. You don’t take life for granted. You pursue the activities that bring you joy; you try to live in alignment with your values. But you still play a game with yourself, one that protects you from life’s hardest truths. The game goes something like this:

You read a story about someone—someone like you, maybe—who was unlucky enough to get hit by one of life’s great tragedies. The incurable disease, the drunk driver, the stray bullet. The logical, rational part of you recognizes that the person could be you. “There but for the grace of god,” and all that. A shiver passes through you; you’re chilled by the possibilities. And then that other, not-so-logical part of you takes over. “Well,” she says, “That couldn’t happen to me. That person is different from me, because of <insert strange, illogical, and overwrought rationalization here.> Me, though, I’m safe. I’m good. That won’t happen to me.”

I played the game. You probably do, too. On the one hand, I accepted, in the abstract, that any number of horrible things could happen to me. When I was younger I used to fear these things—the cancer, the kidnapping, the murder-by-stranger—so much that I couldn’t sleep at night, waves of dread washing over me as I imagined a future of suffering. And yet this other side of me, the protective one, played the denial game. When confronted with specifics, I came up with excuses about why some bad thing couldn’t really happen to me.

And then I got cancer. For real.

A willow tree stands tall in the foreground along a paved path. There's a split-rail fence next to it. The sky shows a fiery orange sunset.
Gratuitous sunset shot to balance out the heavy content!

The first time I met with my surgeon, she gave me some advice: “Stick to reputable, medically-focused, fact-based websites if you want to look up something about cancer. Do not go on cancer blogs. Do not read random cancer stories. Do not go on Facebook cancer groups.” That way lie the horror stories, the tales of misdiagnosis and under-diagnosis and the “I thought I was cancer-free but turns out it was everywhere.” That way lies danger, and dread, and so much fear.

Reader, I tried to follow her advice. I did. But I also craved other people’s stories. I was a 33-year-old with invasive cancer! None of my friends could relate. I have two first cousins who also had breast cancer relatively young, but even they were in their 40s and had kids, teenagers and twenty-somethings, when they were diagnosed. I was 33, with no kids, and needing to confront all sorts of hard new truths about my body and my fertility. I connected with a few other people around my age, friends of friends, but I needed more.

So I went online. I followed Instagram accounts and joined relevant subreddits. I read stories from other cancer patients, ones kinda like me, with experiences kinda like mine. And sometimes they helped; they gave me insights or perspectives I couldn’t find elsewhere. But mostly… they scared me.

Other people’s stories would put fears in my head that hadn’t been there before. “My metastases felt like a muscle ache,” one person wrote. Cue me—experiencing bizarre achy pains after finishing chemo—spiraling. “I was told my early-stage cancer was gone but then a year later we found out it had spread,” someone else wrote. Cue me—an early stager—suddenly wondering if my surgeon should’ve removed more lymph nodes rather than the one sentinel node, because what if the cancer was in THOSE nodes, the ones she left inside?! What if it skipped my nodes entirely and is making itself at home in my bones and lungs and liver RIGHT NOW?!

I’d be reading a fiction book (blessed escapism!) and suddenly a character’s sister would die on the table during breast cancer surgery. At the library I’d thumb through a nonfiction book about cancer (just testing the waters) and my eye would zero in on a terrifying statistic (“<insert scarily large percentage here> of women with early-stage breast cancer already have microscopic cancer cells in their bone marrow at diagnosis”). I’d click through Instagram tags and suddenly be reading about a thirty-something who thought she was all good after cancer only to discover, three years later, that it was in her bones. “I was healthier than ever; I was playing tennis and running and working for a nonprofit,” she wrote. Cue me—a thirty-something who took up tennis last summer and enjoys running and also works for a nonprofit—feeling that shiver, that chill, that rise of sheer terror and dread.

The stories! They could be about me! After cancer, the denial game didn’t work anymore. I couldn’t (ir)rationalize away the possibility of tragedy. The tragedy was coming from inside the house. It had been here all along. I was the tragedy.


Here’s the other thing about stories: We create them all the time, in big ways and small, even when we’re not fully aware that we’re doing it.

Receive an email from your boss, asking you to hop on a Zoom call in an hour, without any context? I bet you’ll tell yourself a story. She’s going to fire me; someone complained about me; I did something wrong! (Maybe you’re more optimistic: I’m getting a promotion!) You’ll probably spend that hour spinning stories, teasing out possibilities, maybe even carrying out full-on hypothetical conversations with your boss. You’ll imagine the look on your face when you hear the news; you’ll think, “How will I tell others that this happened to me?”

*insert metaphor about paths/light/darkness here*

When you get cancer, this story-telling compulsion kicks into overdrive. It is so, so hard to hear you have cancer and not know the details: the staging, the treatment plan, even who your doctors will be. Your brain spins breathtakingly detailed stories about what’s going to happen to you; you spiral down imaginary paths. Usually those stories aren’t good ones; those paths are dark and cobwebbed and lined with grim-faced specters breathing down the back of your neck. Even later—after you know what’s going on with your cancer, after you’re done with active treatment, after your doctors say you’re good—your brain still tells you stories. Because one story—one really scary story—already came true. So you keep on telling yourself more stories, where the cancer returns (or never really left, to be precise), or you get another cancer, or or or or or.

And those stories? They take a toll. They will eat you up from the inside, curdle your brain, reduce your psyche to a weeping mess. That story you told yourself about your boss, the one where you just knew she was going to fire you—didn’t it make your heart race when you imagined it? Didn’t you feel real physical sensations, even though the story was entirely in your head? I bet it brought your mood down. I bet it made your day a little darker. Even though, in all probability, your boss just wanted to chat about a new work-from-home policy your company is rolling out. Something totally (dare I say it?) benign.

But you told yourself another story, and you let its attendant emotions overrun you.


When she told me to avoid other people’s stories, my surgeon was reminding me of something at once breathtakingly simple yet immensely powerful: that my story is my own. It’s something I’ve been trying to internalize recently, as I sit with the immense weight of what I’ve gone through over the past year and a half. Nobody has a cancer story quite like mine, because nobody’s cancer is identical. Nobody’s! And I mean that literally, not figuratively: Our tumors are unique, with their own genetic makeup and markers. Our bodies respond to treatment in different ways; our healing happens on different paths. Even statistics—chance of local recurrence, chance of distant recurrence, five-year survival rate—tell just one story, a story that is the aggregate of individual stories. I’m not a statistic, and a statistic can’t tell my story. I’m not the thirty-something tennis player who runs and works at a nonprofit and is now stage IV; our stories might have some similar elements, but they are not identical.

Kelly, a young white woman with blue eyes, stares into the camera. Her head is bald from chemo. A long dark shadow runs down the middle of her face, which is dramatically lit by the setting sun.
My chemo-bald head was filled with anxiety and stories!!!

I can’t know what happens next in my story.

What I can do is this:

I can choose not to tell myself stories about things that haven’t happened yet, about what if and maybe this and when inevitably that. I can ground myself in the moment, in what’s happening right now.

I can choose not to believe that someone else’s story is any reflection on my own (regardless of how alike we are, as protagonists).

I can make my story the best version it can be. I can fill it with friends, and food, and family, and animals, and travel, and things that make me happy and make the world a better place. I can—deliberately, with care and love and attentiveness—write my own damn story.

I’m trying. I really am.

FLASHED.

11:03 p.m. on a Monday night in late March. I’m lying on the couch, delaying going to bed by playing game after game of Octordle. It’s a chilly evening—there’s a low of 20˚F predicted—but I’m not cold, not even a little bit. In fact, I’m boiling. My face and torso are covered in a shimmering sheen of sweat as I fan myself ineffectually. I don’t really need to do that, though. The heat will pass soon. As I go about my nightly routine—take pills, wash face, brush teeth—I’ll probably feel chilly, even. I’ll get in bed, cocooned in the covers, and hope I fall asleep before the next hot flash hits.


They feel a bit like vertical waves, my hot flashes. They start in my face and cascade down my body; I always know one’s about to hit when I feel that telltale heat blossom across my forehead. For a few minutes, I’m roasting. My face is flushed and I swear I can feel my own heat radiating off my body. Surely there’s a way to harness this heat, I think. It’s just going to waste here!

Screenshot from "The Year Without a Santa Claus" featuring the Heat Miser, an angry-looking fellow with a bright red nose, glittery red shirt, and red flame-like hair. Photo by Scott Beale / Laughing Squid, used under a Creative Commons license.
Actual photo of me experiencing a hot flash.

The hot flashes could be worse. I’ve heard of folks waking up in pools of sweat, or experiencing brief yet intense mood swings. And, yeah, I know they’re a part of life for about half the population, so it’s not like they’re a unique malady. But still. Still. I’m 35 freaking years old. I shouldn’t be experiencing them at all.


Look, don’t get me wrong. The hot flashes aren’t majorly disruptive to my life or anything. But they are a daily reminder that, hey, I’m not your average 35-year-old. Every time I wake up sweating in the night, every time I kick off my socks for some relief, every time I yank off my sweatshirt and throw off my cozy blanket and look at my red, sweaty face in the mirror, I’m reminded that I’m getting ovarian suppression injections and taking tamoxifen because I HAD CANCER. ME. ME!

So many people, when first learning of my diagnosis, had some variation of the following to say: “I’m so glad you caught it early. I hope your treatment is minimal and then you can move on with your life and forget about this bump in the road.” And even in those early days, even when naive Old Me had no idea what was in store, even then I knew that this was not a bump in the road or a minor pothole I’d forget about later. I knew it was a chasm opening up in front of me, a surprise sinkhole, a freak fissure. But I understood why people said it. It was intended as a comfort, not to minimize my experience. It was meant to give me hope as I navigated treatment, to remind me that normalcy might still exist for me. I get it.

And yet. If someone were to say a variation on that line to New Me, I would have real difficulty not emitting some kind of rude snicker/choke/splutter/anguished cry. Because there is just no way that I can “move on” when the physical, mental, and emotional fallout of this disease is with me every single day. I’m not going to move on and pretend this never happened. I’m just not! I’m moving laterally, and forward, and around the chasm, but not without carrying the weight of cancer with me and not without being reminded that, hey, the chasm still exists. And that’s OK. It doesn’t mean I’m in constant emotional distress or anything; it just means that I am choosing to acknowledge the uncertainty of life and the fact that this really horrible thing happened to me. Ignoring pain doesn’t make it go away. It doesn’t.

Plus, there’s this: Although I think it’s gross to talk about silver linings when it comes to life-threatening disease, I’d be lying if I said I haven’t extracted some good out of my experience (more on that in a future post). I can’t learn from my experiences if I choose to forget them. And that’s part of the reason why I will not be moving on or forgetting about “this time in my life.”

And even if I wanted to forget… the hot flashes would remind me.

(One bit of good news, though: Tamoxifen-induced hot flashes might be correlated with a reduced risk of breast cancer recurrence!)

STRENGTH.

In November 2020, during the strange, liminal time between my diagnosis and my first appointment with my surgeon, when I didn’t know many details about my cancer or how it would be treated, Steven and I got a half-cord of firewood delivered from a local nursery. They came and dropped it off in our driveway, dumping it unceremoniously from the bed of a truck one evening. The firewood, of course, could not stay in the driveway. It needed to be moved, stacked into a rack under shelter of the carport, the excess packed into our shed.

It was a tough job, but somebody had to do it. I decided that somebody would be me. Single-handedly, I would haul every last log up the driveway and find it a home.

A large stack of firewood leans against a shed. There are a few buckets with kindling in them. The setting sun casts bright orange light over the shed.
Maybe a third of the pile?

A cord of firewood, according to Ye Olde Internet, weighs between 2,000 and 3,000 pounds. So a half-cord—which comprises about 350 individual pieces of wood—can range anywhere from 1,000 to 1,500 pounds.

It wasn’t far from the pile to the rack, maybe three or four yards. But still, it takes a while to carry 350 pieces of rough, splintery wood, to find the perfect spot for each piece, to maximize space and keep the stack tight and well-managed. The wood arrived in late afternoon, and as the pale November sun set, I made progress on the pile. Back and forth, pile to stack to pile to stack to pile. Over and over and over again. I stripped off layers of clothing as I went, my body warming to the task despite the cool evening. I declined offers of help; after beginning on my own, I wanted to finish on my own.

It was fully dark by the time I was done. I was sweaty, and my arms ached, and bits of wood clung to my clothes, but I felt good.


You don’t need a degree in psychology to figure out why I attacked the wood pile with such fervor, such determination. Just 10 days earlier, I’d gotten the news nobody ever wants to get: I had cancer.

One week I was a healthy, hale, hearty 33-year-old, with a regular weightlifting habit and a newfound feeling of power and strength in my body. The next week, I was a cancer patient.

Kelly stands outside cradling a small tan chihuahua. Kelly is wearing a fuzzy beige sweatshirt and has curly hair down to her chin. She is wearingn glasses.
Cuddling a friend’s dog during the post-diagnosis, pre-staging Twilight Zone time.

The two were not—are not—mutually exclusive, of course. You can be healthy and strong and still have cancer. Nothing had really changed in the moments after I got my diagnosis—the cancer had already been there while I was settling into my fitness groove—but of course now I knew about it, knew that it was inside me, growing.

And that was pretty much all I knew. Ask any cancer person about what point in their diagnosis and treatment was the worst, what point caused the most existential terror, and they’ll probably say it was the time between diagnosis and coming up with a treatment plan. All the worst-case cancer situations seem possible in those days, and unless you are truly capable of embodying those elusive living-in-the-moment Zen vibes and/or have no imagination, you run through those situations in your head on a daily—if not hourly—basis. One way I kept myself at least moderately grounded was by moving my body, by doing yoga and doing yardwork—and hauling firewood—to remind myself that I was still here, still present, still alive. (The other way? PILLLLLS, BABY!)

I tried to keep my body active all throughout treatment. Although my weightlifting fell by the wayside, I did yoga every single damn day throughout my entire course of active treatment. Sure, during the worst of chemo, that yoga was barely more than gentle stretching, but hey—I was moving. I went for frequent walks, too, sometimes with my pups and sometimes without. Some days I felt so weak I could barely make it up the slightest of inclines without Steven placing a hand at my back, gently guiding me upward. But I kept going and I kept moving.


Fast-forward to now. March 2022. I’m sixteen months out from diagnosis and six months out from starting a new habit that I really hope will stick: I’ve become a runner.

I know, I know.

Before I laced up the ol’ (and I do mean ol’) sneakers for my first run in September, I had Very Strong Opinions on running: namely, that it sucked. It was torture by another name. It was for masochists who secretly hated themselves. It was emphatically not for me.

I’d dabbled with running years ago, back in 2014. I did a couch-to-5K program with moderate success, culminating in running a 5K with Steven and my mom. I remember feeling so proud after finishing that race, because I’ve never been sporty or athletic and the fact that I had stuck with a training program and run a damn race was fairly momentous. But truthfully? I didn’t really enjoy it. The race was fine, but training for it? Meh. I experienced no runner’s high. I never lost myself in the repetition, the rise and fall of my feet, over and over again. It was just… tolerable.

OK, that’s being charitable: It was tolerable at best; torturous at worst. Still, I registered for a 10K and started training, determined to keep going. But a really nasty upper respiratory infection sidelined me for weeks, and I didn’t end up running the 10K. I never got back into the habit. My running days were over, and I’d tell anyone who mentioned running in my presence that I considered it a thing of my past. I’d tried it, but it wasn’t for me. In fact, I considered it torture. Running is for masochists and fitness freaks. End of story.


And then I got cancer. And then I started tamoxifen and Lupron. And then I went into menopause. And then my blood pressure—responding to the sudden drop in estrogen—went bonkers. We’re talking readings of 155/100 at my oncologist’s office when I’d go in for my Lupron injection. Readings that made the oncology nurses do double-takes. Readings that had me on the phone with my angel of a primary care practitioner, having her talk me down from my fear that I was one stressful moment away from a stroke. Readings that sent me into a panic spiral, and then sent me to my cardiologist. Readings that, while they were often normal and healthy, were sometimes very much not normal and not healthy, spiking to scary highs when I was anxious (or sometimes when I was not anxious). And that’s how I ended up, at the age of 34, on a beta blocker to regulate my blood pressure. Sigh.

In an effort to combat said high blood pressure and help prevent cancer recurrence, I knew what I needed to do: incorporate more cardio in my life. My dad has been running for years now and my mom runs occasionally. One of my best friends was training for her second marathon. Runners were all around me! The bar to entry was so low—you just put on some sneakers and go!—that I felt compelled to at least give it a shot. So one day in late September, Steven and I headed outside and ran.

I did a mile and a half that first day, shocking myself. Even more shocking? I enjoyed it.

I haven’t really stopped since.


A photo of snow-covered grass to the left and right of a shoveled sidewalk. You can see Kelly's shadow in the snow.
A snowy run.

The thing about running is that it really, truly is mostly a matter of mental strength. I know, I know. I used to roll my eyes when I heard or read anything along those lines; I thought it was trite and probably not true. After all, I thought, if your lungs aren’t strong and your heart isn’t strong and your legs aren’t strong, what the fuck does it matter if your mind is strong?! And, sure, you do need a certain amount of stamina and physical strength to run (although I’d argue that even short distances, even slow paces, even walking breaks are totally fine, and you can still consider yourself a runner if you avail yourself of those tactics, as I sometimes do!). But the mental fortitude? Yeah, it’s really freakin’ important.

I know it’s true because it’s the only way to explain my current love affair with running. Eight years ago, I was undoubtedly in better physical health; I was in my mid-20s and, um, I hadn’t just gone through treatment for cancer. Yet running was torturous back then. When I first started running this time, I was just four months out from finishing active treatment, dealing with all sorts of physical maladies from surgery, chemo, radiation, and the onset of good ol’ medical menopause. My body was a mess! Yet running was legitimately enjoyable even during that first mile and a half, and I’m pretty damn sure it’s because my trusty little brain—the same one that took a real psychological beating during cancer—is stronger than ever.


In the past, physical discomfort sidelined and derailed me. If I felt out of breath or physically uncomfortable during a run, Old Me might’ve stopped. But New Me knows that I am so much more capable than I give myself credit for. I had cancer, for fuck’s sake! I can run three, four, five, six miles, no problem. So these days, when I start feeling unpleasant during a run, I ask myself a few questions:

Are you *actually* in pain, or are you feeling some discomfort from pushing your body beyond what it normally does?

Are you *actually* in pain, or are you just feeling disheartened by the ridiculous hill you’ve just started up?

Are you *actually* in pain, or are you reaching for a mileage goal you’re afraid you might not be able to attain, so you’re thinking it’d be easier to quit rather than to try and fail?

And the thing is… I’m rarely in pain! I’m rarely sitting in real physical discomfort. So when I check in with myself, when I ask myself what’s really going on, more often than not I realize I’m perfectly physically capable of whatever is making me want to quit. And that knowledge is really freaking powerful. I know that I just need to focus on what I’m doing in that moment. No worrying about what comes next, or what my pace is, or about how high that damn hill is. One step at a time, one foot in front of the other, and soon I’ve reached the top of the hill and it’s all smoooooth and easy from there on out.

(And when I am in pain or I am truly feeling bad? I cut my run short or take a walking break. No shame, no recriminations. Because I’ve already learned to be easy with myself, to give myself grace, and that lesson is sticking with me.)

So that’s how I know that, yep, it’s true: Running is about mental fortitude. And after going through treatment for cancer, I have really built up that strength. Not all the time, not every day, but enough so that when little things start to bother me, I remind myself that they are just little things—no need to waste my energy on them. I can let them go, let my feet carry me forward, and let my mind rest.

These days, running is not torturous. It is glorious. Every single step I take reminds me that I am still fucking here. I am moving forward. I am strong.

SURGERY.

January 5, 2021. One year ago today.


“Hold my hand,” my surgeon says. “Take a few deep breaths of the oxygen.” 

I am splayed out in an operating room. It is obscenely bright; two large circular lights shine above me as healthcare professionals move with haste and purpose around the room, and around me. One nurse straps automated compression machines onto my legs; another fiddles with my pulse ox monitor; the anesthesiologist examines my IV placement. I’m lying down, though, and I can’t see them. I can only hear their bustle, feel their energy.

“I’m going to start putting in the first drug,” the anesthesiologist tells me from somewhere behind my head. The IV is in my left hand, bumped up against my wrist bone. It took a “special IV girl” and a child-sized needle to place it, and the anesthesiologist says it’s a little slow but it’ll do—better than placing a new one.

I can’t see much from my vantage point. I’ve got an oxygen mask on my face and I’m staring upward, into the lights. My glasses are somewhere else, safely stowed in my bag of clothes. My arms and hands are splayed out, one by the anesthesiologist and the other gripping my surgeon’s hand. I can’t see her but I feel her, both the physical heaviness of her warm hand on mine and the indefinable presence of her body near mine. I admire the way she exudes both confidence and kindness in equal measure. I admire the way the hand that is currently giving me comfort will soon expertly wield a scalpel, will slice through flesh and tissue and muscle to remove both my tumor and the lymph node voted Most Likely to Succeed in Growing Cancer Cells.

“This drug’s going to feel a little spicy going in,” she tells me. “Take deep breaths.”

I do. I breathe so deeply, sucking in the oxygen that my anxiety-ridden body has craved for months. As the oxygen euphoria hits I wonder why I haven’t been breathing deeply since the mask went on a minute ago. Come on, I think, you had this amazing delicious sweet perfect air delivery system on your face but you didn’t take advantage of it?!

I breathe and I hold my surgeon’s hand and I wait for the burn in my veins but it never comes. I’m already asleep.


CANCERVERSARY.

Last month, on November 11, Steven and I took the day off from our respective jobs and drove three hours each way to pick up a cake.

Something about the camera angle makes my hand look ginormous!

I’d ordered my custom cake weeks in advance. I wasn’t celebrating a birthday, or a wedding anniversary, or anything conventional like that. No, I was in rural Pennsylvania—Bethlehem, in fact—to pick up a cancer cake.

The online cancer community—and particularly the AYA (adolescent/young adult) cancer community—collectively believes in celebrating every cancer milestone you damn well feel like. Why? Well, survivorship is hard, cancer is an asshole, and cake is always a good idea. Especially cakes with darkly humorous messages on them.

Hence my cancer cake, which helped me commemorate (“celebrate” is too strong a word) the one-year anniversary of my diagnosis. One year since everything in my life went topsy-turvy. One year since I crashed right into some hard truths about myself, and illness, and life in general. One year since the old me got left behind, waving forlornly from a path that wasn’t mine to walk.

I think of her sometimes, the old me, the one who got a call saying, “Good news—your biopsy was negative for cancer!” For her, November 11 is just a fun palindromic date, not the day everything changed. For her, cancer is still something that happens to other people. She’ll never experience the absolute terror that comes with a cancer diagnosis. She doesn’t know what it’s like to sit, exposed, in an exam room while a surgeon stares at your chest. She’s never wondered what her pre-op nurses’ smiles look like behind the masks they wear because of the pandemic. She doesn’t know the taste of a saline flush, that acrid tang that mysteriously appears in the mouth as a nurse cleans out a port. She doesn’t feel a twinge in her ribs and immediately suspect cancer is silently taking over her entire body. She’s an innocent, in so many ways.

But she’s also so ignorant of so much. She doesn’t know the freedom that comes when you decide to live life on your own terms, when you say “fuck it!” to the expectations, big and small, that people and society set for you. She doesn’t know that life is infinitely more enjoyable when you stop sweating the small stuff. She doesn’t—can’t—truly appreciate every little beautiful horrible painful happy moment of her life and the people in it. And she doesn’t know the joy of ordering yourself a fancy vegan cake from your favorite fancy vegan bakery and cutting into it with some dear friends to celebrate the fact that one year on, you are still here.

Mood lighting, because why not.

So here’s to me, the new me and the old me, and to cake. Especially cakes that look dark on the outside but have funfetti on the inside. I’m not sure how I’ll top this cake for my two-year cancerversary in 2022, but I’m sure gonna try.

MORE THAN PINK.

What’s overdone and trite and pink all over? Breast Cancer Awareness Month!

Here it is: my first October as a breast cancer survivor. And here it is, the explosion of pink. Pink ribbons, pink hearts, pink pink pink. On social media, in my inbox, on the front windows of stores. Pink iconography and pink words, as if the vast and horrible complexity of cancer can be distilled into a slick visual package, as if the life-shattering reality of a cancer diagnosis is best represented by a ribbon magnet on your exhaust-spewing SUV.

It’s not even the color that’s the problem, although it is ridiculously, stereotypically gendered. (As if pink is a ~girl color~ and as if men and nonbinary people don’t get breast cancer.) And it’s not even the focus on awareness that’s the problem, although that does grate—aren’t most of us already aware that breast cancer exists? It’s not awareness we need, really. Why not focus on education (how to do a self-exam; how to evaluate your risk) or the funding of crucial research? It’s the pinkwashing that’s the problem, the way a corporation can splash some glitter and some magenta on a product and pretend they’re doing good with no accountability.

I said pink-the-color-itself isn’t the problem, but also, it sort of is. Pink is gentle and nonthreatening, a baby-soft, comforting color. It’s cotton candy and puffy pillows and bubble gum.

My breast cancer experience was not pink. Cancer isn’t pink.

Cancer is red. It’s the angry red gash of a surgical site, the fluid in the surgical drains, the vivid red of adriamycin in a chemo bag.* It’s radiation burns and the pills you take when your port site doesn’t heal properly and you’re trying to stave off infection. It’s the mystery rash on your chest and neck that could’ve been caused by taxotere, or surgical glue, or maybe shingles but who knows.

Cancer is orange. It’s the translucent orange of the pill bottles—so many pill bottles—that fill your medicine cabinet, the ones to treat the cancer and the ones to treat the side effects of treating the cancer. It’s the orange of iodine solution spread across your chest before placing or removing a port, an orange you need to wipe off with a cloth because you’re not allowed to bathe for a few days.

A glass shelf in a medicine cabinet filled with orange and white pill bottles. There's tamoxifen, sertraline, ondansetron, lorazepam, and alprazolam in view.
Pillllls, baby!

Cancer is yellow. It’s the sickly, bruise-like yellow of trauma to the breast from a difficult MRI-guided biopsy, when the radiologist had to go in twice to find a second lesion that turned out to be benign. It’s the “tan-yellow, lobulated, glistening” appearance of your tumor itself—of cancer itself!—as described on your pathology report.

Cancer is green. It’s the bracken-like green of the four radiation tattoos that now dot your chest and it’s the metaphorical green of a stomach queasy from chemotherapy.

Cancer is blue. It’s the Arctic Glacial Icy Freeze sports drink bright blue of your urine after you get a sentinel node biopsy and a nuclear medicine doctor injects you with radioactive dye and the dye stains your breast and your urine both. It’s the pale blue of the cloth gown you slip into at each of your radiation sessions, oversized and baggy, making your already-small frame look painfully thin. It’s the robin’s egg blue of the SSRI you have to take after cancer, because living with your unadulterated thoughts is not an option.

White pills; pink hand.

Cancer is white. It’s the small, round chalky-white pills you’ll take every day for 10 years to prevent the cancer from taking root elsewhere. It’s crisp paper surgical masks and the bright, harsh lights of the operating room. It’s the sterile bandage taped onto your port when the nurse accesses it on infusion day and it’s the plastic identification bracelet the hospital gives you each time you’re there.

Cancer is black. It’s the black-red of dried blood, gunked up under surgical glue on a port incision, and it’s the grey-black of grainy images on a pathology report showing the traitorous cells themselves.

And yes, fine, sure, cancer is pink. It’s the pale pink of tender scars: over port sites, over biopsy sites, over surgery sites, over lymph node removal sites. It’s the pink of a tender life, ripped open, trying to heal.

*Surgical drains and adriamycin weren’t part of my cancer experience, but they are part of the experience for many breast cancer patients.

HAT GIRL SUMMER.

No, that’s not a typo… I am truly talking about headwear!

So here’s the thing: This post-active-treatment life is freakin’ tough. I’d heard from other cancer survivors that transitioning back into “normal” life could really mess with one’s head, but I did not anticipate just how messy that mess would be. As my primary care provider reminded me recently, healing from this kind of trauma and grief is not linear, and I am discovering that truth the hard way. Every time I think I’ve wrapped my head around what the fuck just happened to me, it’s like the whole truth of it slides out of focus and out of my grasp and hits me from a new and horrible angle.

Which is why it’s so important to find moments of joy and levity wherever I can. And this summer, hats are bringing me joy.

As a curly gal, I’ve always had a fraught relationship with hats: Most of them crush my curls, taking them out of commission until the next wash day. So I have to be strategic about when I choose to wear hats, rather than throwing them on with the careless abandon known (but likely not appreciated!) by the straight-haired.

You can probably see where this is going. Basically, my post-chemo short hair offers a big ol’ silver lining: I can wear hats whenever I want! So today I’d like to introduce you to my Four Hats of Summer. (Yes, this is a ridiculous post. No, I do not care.)

The classic baseball cap

Selfie of Kelly wearing a navy blue baseball hat with "The Humane Society of the United States" embroidered in white on the front. A bunch of flowers are poking out from her backpack.
At the farmers market, with a bunch o’ flowers.

Needs no introduction. A true American classic!

Baseball cap pros:

  • Has a slider to adjust the fit (crucial for my tiny noggin)
  • Is embroidered with my organization’s logo for sneaky activism
  • Is dark blue—doesn’t really clash with anything and is complementary to my mostly neutral wardrobe
  • Makes me feel sporty (lol)
  • Survives packing in backpacks, suitcases, and various other traveling implements without losing its shape

Baseball cap cons:

  • Technically features outdated branding for my organization (esp. bad because I spent many years on the branding team)
  • Is dark blue—kind of drab, especially for the summer
  • Does not protect the back of my neck; must apply sunscreen or risk a serious farmer’s tan

The straw hat

Purchased years ago at Sacred Feather, a now-shuttered hat shop on State Street in Madison, Wisconsin.

A selfie of Kelly wearing sunglasses, a dark green top, a white crocheted short-sleeved cardigan, and a wide-brimmed straw hat with floral fabric around the brim.
My great-grandmother crocheted this sweater!

Straw hat pros:

  • Has a floral band that offers a bit of visual interest without being garish
  • Provides 360˚ coverage and protects the oft-exposed back of my neck
  • Is lightweight
  • Screams “warm weather millinery” in a way that a baseball hat just doesn’t
  • Reminds me of the years I lived in Madison!

Straw hat cons:

  • Does not pack down and thus takes up too much space in a suitcase to be truly travel-friendly
  • Is, perhaps, a little ostentatious? One cannot hide while wearing this hat.
  • Is susceptible to blowing off on a gusty day

The netted wonder

Truly an innovation in functional hatwear. Thanks to my friend Sara for tipping me off about the existence of netted hats like this and thanks to Steven for purchasing a too-small size and generously gifting it to meee.

Kelly stands in her yard holding a fistful of freshly pulled stiltgrass. She is wearing a wide-brimmed grey hat with netting covering her face.
The perfect hat for pulling invasive stiltgrass at dusk.

Netted hat pros:

  • Protects one’s face from all manner of buzzing, biting, blood-sucking insects—ideal for evening gardening when the gnats are a-swarmin’ and the mosquitoes are a-hankerin’ for blood
  • Has a very wide brim—lots of sun protection!
  • Cinches at the bottom of the netting for a snug fit around one’s neck, leaving no gap through which insects can enter
  • Is super lightweight
  • Folds up into a tidy (and very packable) cylinder

Netted hat cons:

  • Obscures one’s vision just a bit thanks to the netting
  • Is not exactly fashion-forward
  • Doesn’t really offer a convenient way to tuck the netting up and off one’s face—would be great if the netting could be secured on top of the hat

The Regency bonnet

Betcha didn’t see this one coming! My dear friend Kim sent me this amaaazing handmade bonnet for my birthday this year and it is just the most darling (if not the most practical) thing. It’s a poke bonnet, so named because the brim pokes out around one’s face, and was popular during the Regency period. Adorable.

Kelly wears a pink shirt and a straw bonnet with a large brim and a back dome that extends fairly far out. The brim is wrapped with a long purple ribbon (which is tied under Kelly's chin) and blue faux flowers.
No clever caption. The hat speaks for itself.

Regency bonnet pros:

  • Makes me feel like an Austen character (I’ve always thought I’m a cross between Elinor and Lizzy; HBU?)
  • Is unique AF
  • …is a Regency bonnet

Regency bonnet cons:

  • Isn’t terribly practical if you want to recline or sit back or anything like that
  • Has a long ribbon that could get stuck in car doors
  • Does not allow for unobtrusive sneakery—this is a hat for a woman who wants to be noticed!

And there you have it: my four hats of summer.

Selfie of Kelly. She's wearing glasses, a pink shirt, and green leaf earrings. Her hair is short but starting to curl.

P.S. My hair is growing back at a rapid clip! Having shaved my head twice before this whole cancer thing, I knew what to expect in the growth journey, but I’d forgotten how quickly my hair goes from “yikes, that’s REAL short” to “cute pixie cut!” (Not that I dislike the “yikes, that’s REAL short” stage, to be clear!) My hair started coming back in early/mid-June, and now it’s at the point where, if I don’t comb it after a shower, I can see the curl patterns forming when it dries. (It’s funny when I read about formerly straight-haired people who get “chemo curls” after finishing treatment—that’s just normal hair for me!) I’ve already had to have a few little trims to the hair on the back of my neck (thanks, Steven and Bonnie!) because it gets shaggy quickly, but otherwise I’m just letting it grow.

On the other hand, my poor eyelashes seem stunted. Pre-chemo, they were gently curled and long enough that they sometimes brushed against my glasses annoyingly. Now, they’re just… kinda stubby. I’m still holding out hope that this is just a first damaged batch of eyelashes, and the next ones that come in will be restored to their former glory, but who knows. Chemo does weird things to a body.

SCANNED.

Oh hey—it’s been a minute! You can probably assume that my radio silence is a good thing, going forward… or at the very least, a not-bad thing. It means that I’m just over here taking my pills and getting my butt shots and trying not to spiral when I feel an ache or a pain or one of my damn mysterious rib twinges. No news is good news, as they say.

I’m a little more than a month into my tamoxifen regimen and it’s been fine so far. I thought the specter of blood clots would follow me around like a very specific ghost, but I’ve actually not been too anxious about them. I also haven’t found tamoxifen’s side effects to be unmanageable. I think a lot of women who go on tamoxifen and haaate it are experiencing estrogen suppression for the first time, whereas I’ve been on Lupron shots for more than six months now and already know what chemical menopause is like. So tamoxifen hasn’t really introduced too many new symptoms for me; I’m already an old pro when it comes to hot flashes and whatnot. Lucky me. 🙂

Kelly smiles slightly while staring at the camera and holding up a big bunch of grapes; the bunch is nearly the size of her head. She is wearing a dark blue top/dress and a vintage crocheted cardigan. She has very short hair.
Apropos of nothing, me and a large bunch of grapes.

I have had one big, important experience since my last post, though: my first post-active-treatment scan! I buried the lede on that one, eh?

A couple weeks ago I hit up the ol’ breast center for a unilateral mammogram on my cancer boob. I hadn’t had a mammogram since late December, when I got my SAVI Scout placement and they verified it with a post-insertion mammo. (You can read about the SAVI Scout here; basically it’s a little reflector that’s inserted into your tumor before a lumpectomy. During surgery, your surgeon uses a special tool to locate the reflector and thus knows where to start a-cuttin’.) But this was the big post-treatment mammo, where we’d see what the cancer boob is looking like after multiple biopsies, two surgeries, chemo, and radiation.

I thought I was OK going into the scan, but then I sat down with the intake forms and was suddenly very much not OK. Do you know how otherworldly and surreal it is to have to check that “cancer” box on a list of potential medical ailments? Ugh. Such a gut punch. Luckily the mammo tech was very sweet and gentle, and the scan experience itself was fine. Afterward I sat in the little curtained cubby, draped in a giant paper gown, waiting to hear what the radiologist thought. My surgeon had specified on the order that they could do an ultrasound if anything looked amiss, so I didn’t want to get dressed until I knew whether that was happening.

After 10 minutes or so, the tech returned and handed me a form. “There’s a lot going on in there because of the surgeries and radiation, plus you have very dense tissue,” she said. “We’re pretty sure there’s nothing amiss, though, and unfortunately an ultrasound wouldn’t really show much more. Your surgeon can go over the results in more detail when you meet with her.” Translation: Your cancer boob is a fuckin’ mess inside!

My results were marked “probably benign” on the form, which was… actually comforting. I figured that if they’d spotted anything alarming, they would’ve pushed for an MRI.

A few days later I had my big follow-up appointment with my surgeon, whom I really adore. She is a breath of fresh air, exuding a perfect mix of confidence and kindness. (Her bedside manner during my surgeries was just perfect.) She agreed with the radiologist who read the results: It looked a little funky inside, but that’s to be expected. Nothing rang any alarm bells.

A chunky black, white, and yellow striped monarch caterpillar hangs out on the underside of a long, thin green monarch leaf.
Just a lil monarch caterpillar on some milkweed.

Afterward, she and her NP gave me an extremely thorough clinical breast exam on both sides, dispelling a small fear I’d had that a lumpy bit on my left side might be another tumor. “No, that’s just normal tissue,” she explained. “You just have very dense, lumpy-bumpy tissue.” She instructed me to go home and do my own self-exam the very same day, so I’d know exactly what my healthy boobs feel like, lumps and all. I confessed that I’m really anxious about metastatic disease and constantly fear that my little aches and pains indicate that the cancer has spread without us knowing, and she reassured me just as my oncologist had done a few months back when I asked about the rib twinges and got a chest X-ray to check them out. “I’m not worried about small, intermittent pains in multiple spots,” she said. “Metastatic disease would cause pain in one spot that doesn’t go away and doesn’t respond to painkillers.”

I asked about something else that’s been bugging me: the fact that I had a grade 3 tumor, as shown by my Oncotype report. (My intermediate-high Oncotype score was the reason I had chemo.) I asked whether any aspects of my treatment would’ve gone differently had we known about my high-grade tumor. “No,” she said. “We wouldn’t have changed the order we did anything. You’d still have had surgery first, and then chemo. You have done everything right and you’ve done everything you could.”

There’s a bit of freedom in that, in knowing that I really did throw the proverbial kitchen sink at this fucking disease—even though it was early-stage, even though it hadn’t spread to my lymph nodes. We still took it seriously. We cut it out and blasted it with chemo and radiation, and even now tamoxifen and Lupron are continuing to fight it by starving out any estrogen-hungry cancer cells that are hiding out in my body.

Anyway, my doc sent me on my way with an order for a bilateral mammogram in six months (February) and an appointment to meet with her after that’s done. She also confirmed that I’ll be on a high-risk protocol going forward, alternating between mammograms and MRIs every six months. “MRIs are sensitive,” she warned me, “So you’ll probably get some false positives that need to be biopsied. Just be prepared for that.” I appreciated that warning; the MRI-guided biopsy I had back in December (to investigate a second lesion in my cancer boob that turned out to be benign) was easily one of the most traumatic experiences of my entire ~cAnCeR jOuRnEy~ and I’m glad I know it could happen again, so it doesn’t blindside me if it does.

So, phew. That’s where I’m at. I’ll still be seeing my medical oncologist every three months for bloodwork and to talk about how I’m tolerating the tamoxifen/Lupron combo; my next appointment with her is at the end of October. I’ll also see my radiologist in December so she can evaluate any post-radiation issues (of which there are blessedly few). I’m really glad to have these ongoing appointments, if only so I can air my fears and be reassured and given a dose of reality by my trusted team. I’m hopeful that their reassurance over the months and years ahead will help me calm down and settle into my new reality—one where cancer always occupies space in my mind, but where that space gets smaller and smaller as time goes by.

PILLED.

Here they are: the pills I’ll be taking for the next five to 10 years.

…or maybe not.

At my most recent appointment with my oncologist, we discussed a couple options for my endocrine/hormone therapy. I’ll be getting my monthly ovarian suppression shots (#buttshots) for sure, but there was a little uncertainty over which pill to pair them with: tamoxifen or an aromatase inhibitor. Tamoxifen is typically used in pre-menopausal folks and prevents estrogen from binding to estrogen receptors in breast (or breast cancer!) cells, whereas an AI prevents the adrenal glands from producing estrogen in the first place. AIs are typically used in post-menopausal folks, but because my Lupron shots put me into chemical menopause, an AI would work for me.

Anyway, my oncologist was leaning toward an AI because it has fewer scary side effects—tamoxifen slightly increases one’s risk of uterine cancer, cataracts, and blood clots; an AI doesn’t. However, AIs cause bone density loss, whereas tamoxifen strengthens one’s bones. Confusing! So my doctor decided to order a bone density test: If I had strong bones, we’d go with an AI; if I showed any bone density issues, we’d go with tamoxifen.

I had my DEXA bone density scan last week (super easy; you lie there and get low-dose X-rays of your spine and pelvis) and heard back from my oncologist earlier this week. Unfortunately, two spots on my pelvis came up as juuuust on the verge of osteopenia, the precursor to osteoporosis. (Like, literally on the border between “fine” and “osteopenia.”) Curses! My doctor says it’s probably because of chemo, which can mess with bone density. (On the plus side, my spine is above average density!)

The plan right now is to go with tamoxifen to take advantage of its bone-strengthening effects. We’ll reevaluate my bone density in a couple of years and potentially switch to an AI at that point. The Lupron-plus-AI combo is slightly more effective at preventing breast cancer recurrence than the Lupron-plus-tamoxifen combo, but my oncologist doesn’t want to send me into full-blown osteopenia or osteoporosis by starting me on an AI now.

I’m kind of bummed about it. I’ve been low-key dreading starting tamoxifen because I’m terrified of blood clots, so when I learned that an aromatase inhibitor might be an option for me, I was relieved… only to then have that option taken away because of the bone density issues. When I filled the prescription, I felt such a strong mix of emotions. Pride that I’ve gotten this far in my ~cAnCeR jOuRnEy~ (starting hormone therapy seemed like such a distant point when I first discussed my treatment plan with my surgeon), plus a bit of sadness that these pills and their side effects will be part of my life for such a long time, plus anxiety about said side effects.

But I’ve been thinking about it quite a lot, and I’ve realized… it’s my body. If I find that my anxiety about tamoxifen’s side effects is too strong, I can ask to go on an AI instead. I have every right to ask, at the very least.

In the meantime, I’m getting back into lifting weights to help strengthen the ol’ bones. I’d been really enjoying CrossFit-style workouts last year, but after my diagnosis I just… stopped doing them. I didn’t have the motivation when I was just trying to make it through every day; instead, I started a daily yoga practice that was just what I needed at that time. But now I’m incorporating more weights into my workout routine, which has also expanded to include jumping rope and playing (really bad) tennis. There’s some compelling evidence that regular exercise reduces one’s risk of recurrence for breast cancer, which is reason enough to stay active—not to mention that the endorphins help combat the survivorship blues (more on those in the future, I’m sure).

So here I am, two pills into the 1,676 I’ll take over the next five years. Take that, cancer cells! If there are any of you left hiding out in my body, I hope you starve!

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