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!

COSTS.

Something I’ve learned recently: Cancer treatment is the gift that keeps on giving!

Just when you think you’re finally getting over all the side effects from chemo… another one strikes. In this case, it was the unexpected loss of my eyebrows and eyelashes about six weeks after my final infusion, just as my head hair started coming back all fine and soft. Whaaat? Yes. Apparently Taxotere is notorious for causing late-breaking eyelash/eyebrow loss. Cool!

That loss started at the beginning of June and I’m only just seeing baby lashes and brows coming back in. But I have very few full-length eyelashes, which is… disconcerting. The entire no-hair/sparse-hair situation has made me feel pretttty Gollum-y, if we’re being honest.

Image borrowed (ahem) from New Line Cinema. I feel somewhat entitled to “borrow” it because I spent a SIGNIFICANT PORTION of my high school dollars seeing each installment of this trilogy at least seven times in theaters.

My other super-fun side effects are courtesy of Lupron, the injection I get monthly. Lupron suppresses my ovaries, which means I get some choice menopause side effects (hot flashes, joint pain, trouble sleeping) with none of the benefits (age, wisdom(?!?)). I also sometimes get a really heavy, achy feeling in my thighs, which pairs nicely with the joint pain in my knees. This evening I pulled out my long-neglected bike for a gentle ride around my (admittedly hilly) neighborhood and experienced absolute screaming knee pain on the inclines. I’ve definitely lost muscle strength during treatment, but not enough to explain that very knee-centric pain. I can only assume it’s Lupron doing its worst. Cool cool cool cool cool.

Word on the street (aka my oncologist’s office) is that I might be getting Lupron injections monthly for a few years along with tamoxifen, the daily hormone therapy I’ll start soon. That’s because studies have shown an increased protective effect for women in my particular situation (premenopausal with hormone-receptor-positive and high-grade tumors) when tamoxifen is combined with a drug like Lupron. I’ve got an appointment with my oncologist next week to go over the plan and get my tamoxifen prescription ironed out, so we’ll see what she officially recommends.

I’ve been pretty willing to throw the kitchen sink at my cancer so far. For a risk-averse person like me, it was the obvious choice. Chemo will reduce my risk of a distant recurrence from 10% to 3.5%? Let’s get those drugs a-pumpin’! Tamoxifen and Lupron together will give me a strong shot at avoiding a local or distant recurrence? Time to drop trou and get my monthly butt shot!

But of course nothing is free and I’m starting to wonder what the costs of my treatment will be. I’m willing to put up with quite a lot, but it’s sort of daunting to realize that the side effects of my treatment could linger for quite a while or even appear years down the road. (Lupron has been linked to a loss in bone density, for example.) It’s strange and sad to realize that, had cancer not burst into my life at such a young and tender age, I could have gone literal decades without “hot flash” and “joint pain” becoming part of my personal bodily lexicon. Someday I’ll need to sit with that sentiment, to eulogize and mourn the Kelly-who-could-have-been, the one who stayed young and healthy and blissfully free of cancer’s horrors.

Not today, though. We’ll kick that can down the road a bit, because some things are just too heavy for a warm Wednesday night in June when you can hear trilling birdsong and clicking insect sounds through the open windows. Tonight I’ve got a pup’s belly to stroke and a cat’s chin to scritch and that seems about right for now.

DE-PORTED.

I am PORT-FREE! Lord Voldeport got the ol’ Avada Kedavra last week during my sixth (!) outpatient hospital procedure of 2021. I feel like a real pro at this point—I know exactly where to go when I get to the hospital, where to get my temp taken (#justpandemicthings), what to do at the registration desk… etc. I know enough to know that I prefer my IV to be placed in my wrist or arm rather than the back of my hand, because I’m bony and a hand IV sometimes bumps against my wrist bones uncomfortably. I know all the questions the pre-op nurse will ask, and I know what snacks and drinks they have available in the PACU (I typically go for cranberry juice and Saltines).

My port removal was blessedly uneventful (and hey, this time I didn’t have to do it sans sedation!). Brusque Doctor was the one who carried out the procedure, because of course he was. Even Bedside Mannerless Becky was in the room—the whole band was back together! I almost asked to keep Lord Voldeport after it was removed, but I chickened out. I did get one last look at it before it went to the Great Medical Waste Facility in the Sky and was weirded out by the fact that that loooong catheter used to go RIGHT INTO MY HEART.

I am left with a yellowing bruise (they really beat on your chest when doing port-related surgeries) and a fairly gruesome-looking incision, thanks to the dermabond glue—not only does it secure your incision, but it also glues in place any rogue blood. It will probably take a few weeks to peel off, which is… cool. Can’t wait to show off my dried-glue-and-blood stylings at the pool! Oh, except that I can’t swim until the incision is healed. 😦 Sigh.

A bald Kelly gives the camera a wry smile. You can very clearly see her port underneath her chest skin, with the catheter popping out over her collarbone. She has two visible incision scars.

Very few people were able to see me with my port in place, so I’m sharing a photo here for posterity. It was so very visible underneath my skin, as was the catheter! Ugh! It’s still kind of odd to brush my fingers across my collarbone and not feel the raised bump of the catheter.

This photo is about six weeks old—since then, my hair has really started to grow in! It’s very fine and soft and pleasing to the touch, like baby fuzz. I’m pretty excited to have super short hair during what promises to be a steamy hot summer. Silver linings, I guess.

EMERGENCE.

I’m treated to a serenade every time I step out my door. In fact, I don’t even need to be outside to hear the song—coworkers report the sound is so loud that they can hear it through Zoom, even when I have my earbuds in.

An empty cicada husk clings to the tall green stem of a fleabane plant, which has a few small white flowers. In the background is greenery and a birdbath.
Cicada husk on a fleabane stem.

The music is brought to me, of course, by the periodical cicadas who have emerged up and down the East Coast after a 17-year stay underground. Brood X is here, and they’re making their mark: Their crisp brown husks—the exoskeletons the nymphs shed as they grow into adults—litter vertical and horizontal surfaces throughout my neighborhood; every morning I find more and more of them stuck to the trees and the walls of my house and shed. These ghostlike shells hang from leaves and get stuck to the bark of trees; meanwhile, the newly emerged adult males make their way into the trees, where they begin to sing.

Their song—which, of course, is meant to attract mates—is loud. So, so loud. The low droning buzz is not the rising and falling higher-pitched screech I’m accustomed to hearing this time of year; instead it’s a constant background drone. It’s deafeningly loud in the more heavily wooded areas nearby; one source says the song can reach 90 decibels, as loud as a lawn mower.

Along with their husks, I see plenty of the cicadas themselves. Their splattered and torn-apart and squished corpses litter the road. Individual wings stick to the dogs’ feet and make their way into the house; I find the them scattered around the kitchen door. (Clearly the wings are not as tasty as the cicadas’ meaty bodies.)

A black cicada with red eyes perches on a violet leaf.
Cicada in a quiet moment.

Meanwhile, the adults who have not been trod upon or run over or eaten perch on tree bark or stand in the driveway or hang from leaves. We find at least one stuck to a car tire every day and see dozens on the roads and paths as we walk the dogs.

They are not particularly well-suited to life aboveground. It’s quantity over quality: They will emerge in the billions (!), and many will fall prey to their predators, and the rest will hopefully find a mate and create the next brood of nymphs.

It’s almost too easy to poke fun at these hapless insects. They are loud and not particularly stealthy as they move—bad news for a prey species. Their flight is erratic and jerky. They often fall out of the sky—I have seen it happen multiple times—and land hard on the ground. Some seem to die on impact. Others roll onto their backs and can’t right themselves; even after I reach down and gently turn them over, many flail helplessly, apparently unable to move the way they want.

I can understand why they’re so inept at life aboveground, though. They’ve spent 17 years buried deep in the cool, dark soil, getting their nutrition from the roots of shrubs and trees. They’ve lived a life separate from the one aboveground, a parallel state of existence. As the weather warmed this spring, they began to tunnel up, one by one, waiting until the soil was warm enough to emerge.

Imagine needing to use your wings for the first time in nearly two decades. Imagine the shock of life aboveground—the heat, the noise, the light!—after years in the cool and quiet dark.

I feel for them. In a small way, I empathize with them.

I’ve spent the six months since my diagnosis last November in my own parallel state of existence, my own dark underground life. There was the real world, and then there was my world. Sometimes they intersected, but mostly it felt like they were two slightly separate tracks running alongside one another. I was aware of that real world, and I interacted with it, but it wasn’t my world.

At least five cicada husks cling to the leaves of a Virginia creeper vine, which twines around a dead tree.
This snag (a mostly dead tree which has been given over to Virginia creeper and trumpet vine) supports a robust cicada community.

Lately, when folks ask how I’m doing, I try to express it but inevitably fail. “It’s like I’m coming out of a months-long haze,” I say. I feel as though I wasn’t really present for the past half a year… but at the same time, I was nothing but presence, nothing but bare emotion and physical sensation, inhabiting my body in a more visceral way than I ever have before. Sometimes it all seems like a really bad dream. Did I make it up? I wonder. Did it really happen? Is it really happening?

Of course, it did and it is. I finished radiation last week, and I have the slight pink burn on my chest to show for it. I have my scars. I have Lord Voldeport, although he will be coming out tomorrow (!). I have a perpetual tiredness in my leg muscles that is new. I have baby fuzz coming in on my head and I have appointments for my next Lupron shots and I have a date to meet with my oncologist to talk about what comes next (hormone therapy, mostly). I have the grainy black and white photos of my tumor from the pathology report, and I have the memory of what it felt like under my skin (hard, rubbery).

Summer is my favorite season. I feel so lucky that I’m wrapping up active treatment just as the weather warms, that I can step outside and see life bursting and blooming everywhere I look. I feel lucky that my cancer was early stage and that I only “lost” six months of my life to active treatment, not a year or two years or the rest of my life. I feel lucky that the next stage involves monthly shots and daily pills rather than anything more intrusive.

A pale white cicada emerges from its abandoned exoskeleton, which clings to black netting around a young tree.
We watched this fella emerge at our neighbors’ house weeks ago, before the rest of the brood appeared.

That’s not to minimize my experience or the ways it’s changed me. Some days I feel like those cicadas when they first emerge from their husks. They are soft and white and so, so vulnerable. I know what it’s like to be exposed, to be aware that your body isn’t protecting you the way you always assumed it would.

But the thing is, the cicadas don’t stay vulnerable forever. You can literally watch as their exoskeletons harden. Their wings unfurl; they gain color. In a remarkably short amount of time, their bodies change from pale white to black with vivid orange wing veins and bright red eyes. Some days I am more like them, those newly born and newly tough individuals.

In the months ahead, the adult cicadas will mate. The females will lay eggs on trees. The eggs will hatch and the nymphs will fall from the trees and bury themselves in the soil, burrowing underground to begin their own 17-year journey in the cool dark.

Not me, though. I’m staying up here, in the sun.

SCANXIETY.

Shortly after my diagnosis last November, one of my best friends put me in touch with one of her friends, another young woman around my age who was wrapping up treatment for breast cancer. During those early days when I had no details about my cancer and was filled with a truly staggering amount of existential dread, texting with fellow BC patients was a goddamn lifesaver. (There’s a reason folks in the young adult cancer community refer to people without cancer as “cancer muggles.” No matter how empathetic you are, it’s really, really hard to understand the experience unless you’ve lived it. Caregivers can probably come close, but it’s still a different experience.)

Anyway, this woman introduced me to a new term, one that’s become a very real part of my life: scanxiety. I love a portmanteau, and this is an excellent one. Scanxiety refers to the unique sense of bone-deep anxiety one feels while waiting for the results of a scan—an X-ray, a CT scan, a PET scan, an MRI, or any of the other diagnostic tools your treatment team uses to monitor your disease, investigate new symptoms, or check for spread. It’s the feeling you get when you’re living in a horrible limbo, a binary where one result sets you free(ish) and lets you go on with your not-so-normal life but the other sets you down a scary, uncertain path that might lead somewhere horrible.

Of course, you don’t have to be in the cancer club to experience scanxiety; anyone who’s gotten an imaging test in an attempt to diagnose an ache or pain or unexplained symptom has gotten a taste of it. But when you’ve got cancer, you get more than a taste: You’re force-fed it, through a feeding tube, foie gras duck-style.

Two small, light purple flowers on long stems with bright green leaves.
A light photo to balance the heavy copy. This is a wild geranium!

Scans in Cancerland take on a new dimension of terror. It’s partly psychological: You’ve already experienced a scan that ended in a really bad result—your cancer diagnosis—so you’re primed to expect the worst again and again and again. (Never mind all the other times in your life where scans showed nothing, or where a pain was just a pain.) But it’s also based in reality: You get a lot of scans as a cancer patient. Once you’re past active treatment, your regular scans verify that you have no signs of disease. (I’ll be getting bilateral mammograms or MRIs every six months for the rest of my life to ensure my cancer hasn’t come back.) Although I haven’t reached that point yet, I can easily imagine how nerve-wracking and stressful it will be to wait for those results, hoping for the “All clear!” and dreading the “Something showed up on the imaging…” that might signal a recurrence.

Beyond those regular scans, though, are the ones you get because something is amiss. You feel an unusual pain or an ache where you’ve never had one before, and it doesn’t go away, and you mention it to your oncologist, and they order a test for you—just to be sure it’s nothing. Just to be sure your cancer hasn’t secretly spread and invaded other organs. Scanxiety is real bad with those tests. I’ve had a couple of them recently, to make sure some very strange sensations I’ve been feeling in my ribs and upper abdomen for the past few weeks weren’t anything serious. First it was a chest X-ray, which came back clear, and then it was an abdominal ultrasound, because some of my liver values were elevated in my most recent blood draw. That one came back clear too. (The liver values are probably elevated from chemo, which can do a number on various organs. The pains are, well, still a mystery, but they could also be caused by chemo.)

A bald-headed Kelly is crouching on a gravel path and petting a wiry-haired mutt, who is on her back revealing her belly. They are surrounded on either side by small quart pots of woodland phlox — tall purple flowers.
Me and my shiny bald head at a native plant nursery, surrounded by woodland phlox, petting a very sweet resident pup.

I didn’t tell many people about what was going on. My oncologist made a point to say she was not worried and was only ordering the tests out of an abundance of caution (and, presumably, because she could tell I was freaking out about my mysterious pains). I didn’t want to transmit my [probably unfounded] worry to other people. I told Steven and a couple close friends (y’all know who you are, and you are angels!), but mostly I just stewed in my own scanxiety. It was rough.

Have you ever gotten an X-ray at your dentist’s office and had to wear a lead apron to protect the rest of your body from stray rays? The apron hangs on your shoulders, unnaturally heavy, while you try not to drool as the dental technician shoves hard plastic X-ray plates into your mouth. You don’t realize how much extra weight you’re carrying until, X-rays completed, the tech lifts the lead apron off your shoulders. You stand up a little taller, breathe a bit easier.

Scanxiety is like wearing the world’s heaviest lead apron, only it’s made of mortal dread and heart-pounding uncertainty. If you’re not careful, it sends your brain off on imaginative fancies where you explore every possible outcome (especially the bad ones). And when—if—you get good news and learn that your scan came back clear, the lifting of your anxiety is the lifting of a lead apron you didn’t know you were wearing. Your heartbeat slows, your brain quiets, and you feel a return to a more sustainable state of being.

…at least, that’s what it’s felt like for me. I fully admit that, as an anxious person in general, I am prone and primed to experience scanxiety in its most acute and unpleasant form. So if we talked or texted recently and I maybe seemed distant or not terribly invested in the conversation… that’s why. But the cloud has lifted, the lead apron is off, and I’m feeling some blessed lightness right now. I hope you are, too.

POKED AND ZAPPED.

I was going to begin this post with a clever bit about having gotten new tattoos before revealing that they’re actually part of my radiation treatment and I’d buried the lede, but instead… you get this bland but to-the-point statement, because I do not have the energy for clever bits right now: I started radiation!

Last week I had a CT planning session, where I got a whole bunch of CT scans taken and got marked up with green grease paint, which I had to maintain until this week. (It was preserved under clear tape, which helped.) My radiologist and a dosimetrist then used those scans to map out a radiation plan for me, with the goal of thoroughly zapping any remaining microscopic cells lingering near Lil Bastard’s original site. Yesterday I had my first treatment; the techs took additional X-ray scans, perfected my positioning, and then gave me four tattoos: tiny black dots that they’ll line up with laser lines in the treatment room to ensure I’m in the exact same position for each treatment. Then I got my first dose of the ol’ X-rays. The process took about 20 minutes.

(A side note on the tattoos—they weren’t given with a tattoo gun; instead, the tech put four dots of ink on my skin, then made tiny incisions (maybe using a scalpel? I couldn’t see) to let it seep inside. If you enjoy getting stabbed in sensitive body parts, I recommend breast cancer—between the radiation tattoos and the radioactive dye they inject in the four quadrants of one’s cancer boob before a sentinel node biopsy, you’ll get lots of pokes and stabbings… not to mention all the blood draws and the surgery itself!)

A young man seated at a picnic table outdoors; he's wearing a long-sleeve black shirt and is getting kisses from a small brown chihuahua. The chihuahua is standing on the table. In the foreground is a yellow Russel Wright plate with apple pie on one side and fresh strawberries on the other.
I don’t have any internet-appropriate radiation photos to share, because (1) it’s just me and the techs in the room, and (2) I am VERRRY exposed during the process. So here is Steven and our dog-friend Shadow enjoying a special moment earlier this week, when our neighbors Sara and Ron had us over for an al fresco dinner and dessert.

This morning I had my first regular radiation session, which was quick and painless. The longest part was the drive there… and I’m only about 10 minutes away. It took the techs just a few minutes to get me into position by aligning the tattoos with the laser guides, and then the treatment itself lasted just a couple more minutes.

It’s a pretty space age-y process, with the machine whirring overhead and into position, then the beeping as the actual radiation happens, then the machine moving to its second location for another round of zapping. The treatment room has large backlit photos of a blue sky and cherry blossoms on the ceiling, so you can look at that if you prefer it to large medical machinery. (I dig the machinery.)

I’ll get 19 sessions total, over the course of four weeks: 15 to the whole cancer boob, and then four extra-powerful “boosts” to the location of my tumor. The side effects should be minimal; I’ve got cream for any skin burns or irritation, and I might feel fatigued after a few weeks. But that’s pretty much it.

Aaand that’s where I’m at. Done with two of the big three treatments and moving on to the last one. I have a sneaking suspicion that transitioning out of active treatment will be tough for me. It’s hard to take all these drastic measures to eradicate any remaining cancer cells in my body and then just… stop said measures. I need to remind myself that hormone therapy (a daily pill I’ll take for at least five years) is also treatment, so it’s not as if I’ll be doing nothing.

But anyway. I’m not there yet, and I’m trying to stay in the moment. The whirring, beeping, radioactive moment. ☢️

ALONE/TOGETHER.

If there’s anything worse than being in the Cancer Club, it’s being in the Cancer-During-a-Pandemic Club.

Sometimes I try to imagine what my experience would be like if I hadn’t been diagnosed in the middle of a pandemic, but it’s almost impossible. I know that my friends and family—and even colleagues, because I would’ve been going into the office!—would’ve been woven into my life in so many ways. They’d be stopping by for quick visits, or dropping off gifts and saying hello, or traveling down to come with me to chemo. I would’ve seen their faces and hugged their warm, vital bodies. I would’ve gone home for Christmas, rather than celebrating via Zoom.

Instead, it’s just been Steven and me. My mom came for a week and a half in January, after my lumpectomy/sentinel node biopsy and strict quarantining on her part. I saw Steven’s mom and stepdad once (very briefly, no touching) after they’d been vaccinated and came to drop something off. Our neighbors Sara and Ron have dropped off meals, and we went to look at their new kitchen, and we sat outside with them in the sun for a mini cherry blossom festival with snacks and many small dogs. But that’s it. That’s it.

Sometimes I see photos of other people’s cancer treatments in the Before Times and I want to scream. They’re all dolled up at the infusion center, their beautiful mouths mask-free and visible, with a loved one by their side keeping them company during chemo. Sometimes I read about patients who brought friends—plural!—with them to appointments to keep track of everything. I don’t begrudge anyone that experience, obviously, but it’s just such a stark freaking difference to my experience.

I’ve never seen most of my treatment team members without masks, and many of them have never seen me without a mask. They’ve never seen me smile, or otherwise. I’ve never seen them smile. How does that affect our interactions and our relationships, I wonder? I’m always conscious of the tone of my voice and the smile (or not) in my eyes, but it has to make a difference.

I have been to every in-person appointment—save one—alone. I drove myself to all my pre-diagnosis scans. I sat alone in secluded waiting rooms, shivering under thin cloth gowns, and had only myself for comfort when I got the news that my lump looked a little funky and needed a biopsy. I took myself to my biopsy and cried during the post-procedure mammogram, as the possibility that this was something serious started to settle into my bones.

Post-diagnosis, Steven was allowed into a single appointment: The big one, when we first met with my breast surgeon and got all the juicy details on my cancer (suspected staging, hormone receptivity, etc.). The front desk staffer at the cancer center wouldn’t even let him in at first, not until the receptionist in my surgeon’s office made a call and went down herself to escort Steven up.

A hospital waiting room, with rows upon rows of empty chairs.
The outpatient surgery waiting room. Empty!

I’ve had a couple of televisits, which Steven has been able to “attend” alongside me from the comfort of our living room. But otherwise, it’s just me. He has now dropped me off at the hospital for five surgeries, then gone home to while away the day and wait for the call to pick me up. He bakes bread or cleans the house or just works, distracting himself. Meanwhile I sit in the outpatient surgery waiting room alone, wondering when a nurse will come out, call my name, and take me back to pre-op. There is no familiar face beside me to squeeze my hand and whisper a final “good luck!” before everything begins. It’s just me.

Top-down view of two socked feet  strapped onto ice packs with purple stretchy tape.
Little feeties, all iced up.

Throughout chemo—which, hallelujah, I have finished as of this past Tuesday!—Steven dropped me off and waited for a text requesting pickup. I sat in the big recliner, hooked up to the IV pole, alone. It was just me and the infusion nurses and the other patients. As I sat, I wondered how different it would feel to have someone beside me, ready to unscrew the cap of my water bottle or adjust the volume on my audiobook so I didn’t have to remove my hands from the ice packs protecting me from developing peripheral neuropathy.

It’s not all bad. I am an independent person, and I like being alone with my thoughts. So I don’t truly mind the solitude, sometimes. But like so many other situations in life, I bristle at not having a choice. That’s what’s hard.

There is good, though. There are the creative and kind ways the folks in my circle have stepped up and been present without being present. There are the gifts and the cards and the gift cards (ha), the homemade Mad Libs created to amuse me, the thoughtful books sent to distract me, the snacks supplied to nourish me. Care and compassion distilled into tangible items, squeezed into envelopes, and sent through the mail.

All of them have meant so much. Steven slipped packets of letters into my chemo bag for my last three infusions and it was such a genuine joy to read handwritten notes from so many people while I sat in that chair. I still have five letters left to read, ones that arrived just after my final infusion. I’m saving (and savoring) them for the weeks ahead. And I’m also feeling hopeful that finally, now that chemo is behind me and we’re all getting vaccinated, I will be able to see all my wonderful humans again. Cards are lovely, but people are even better.

BILLS.

Five months to the day after my biopsy on the tumor that would become known as Lil Bastard… I got a bill for said biopsy.

More accurately, it’s for the pathology; I’d already paid around $250 for the biopsy itself back in November. This $77.92 is for the FISH report the lab had to run to determine my tumor’s HER2 status after the initial HER2 report came back equivocal.

(You can learn more about HER2 here—basically, HER2-positive tumors have a HER2 gene that’s not working correctly and is copying itself too quickly, which leads to a more quickly growing cancer and influences the type of treatment you’ll receive. With my biopsy, the initial test for HER2 didn’t reveal a clear answer, so the pathologist completed a more accurate (and, I can only assume, more expensive) FISH test. It showed I was HER2 negative. Then the same thing happened again after my lumpectomy, when they reran all the pathology work on Lil Bastard itself—the result was equivocal and the pathologist performed a FISH test. That one was also negative.)

An image of the bill from CBLPath, with $77.92 due. "Paid online 4/5" is handwritten across the middle of the page.
A very exciting photo of a bill.

This lab charged my insurance $1,350.00 for the “FISH, manual, multiple PRB” test. My insurance adjusted the charge by $960.42, then paid out $311.66, leaving me with a balance of $77.92 to cover.

I have become morbidly fascinated with the costs of my cancer care. In one way, I’m really freaking lucky: My employer was offering open enrollment (for those outside the U.S., the one time a year when you can change your health insurance coverage) at the exact time I was going through my diagnosis. I said goodbye to the bare bones, low-premium plan that had served me and my oh-so-healthy self well for the past seven years and hitched my wagon to the Cadillac of plans: the one with a high premium but also excellent coverage. Once I saw that this plan fully covers inpatient/outpatient surgeries, chemotherapy, radiation, and a bunch of other things and has a low deductible, I knew the math made sense. Does it stink to have more money ripped out of my paycheck every two weeks? Yes. Do I know that it makes sense, financially? Also yes.

So, in theory, my super-fancy, super-pricy plan should cover just about everything from this calendar year (the biopsy was in 2020). I still have $20 copays for every visit, but I started an FSA for the first time to at least pay for those with pre-tax money.

Even though I shouldn’t have to worry about costs, I still indulge in a probably not-so-great habit: Every couple weeks, I log into my insurance portal and pore over the claims that my healthcare providers have submitted to my insurance company. I look at the dozens of claims highlighted in yellow (“PENDING EXAMINER REVIEW”) and the slowly growing list of claims highlighted in green (“PROCESSED”) and the very small list of claims highlighted in red (“PAYMENT PENDING”), and I realllly hope I don’t see one in a fourth color, one that means “DENIED.” (Wouldn’t you think red would denote a denial? Why is red used for “PAYMENT PENDING” instead!?)

It freaks me out that even though I’ve had three chemo infusions so far, starting in February, the claims for each of them are almost all “PENDING EXAMINER REVIEW.” And there are a LOT of individual claims for each infusion, for both goods and services: the IV pushes, the drugs, the lab work, the office visit itself, etc. Taxotere is billed at $8,023 per infusion; Cytoxan is a relatively affordable $2,180.

The priciest charge clocks in at a whopping $16,824. Can you guess what it is?

The back of the Neulasta OnPro injector; it's palm-sized and covered in a thin layer of soft gauze-like material. There's a little tiny blue catheter sticking out of the top.
A $16,000 piece of tech.

…it’s the dang Neulasta on-body injector! The thing that bumps my bone marrow into overdrive! My little bionic buddy is one costly mofo.

Y’all, it is EYE-OPENING. My outpatient lumpectomy surgery was billed for around $10,000… which is a relative bargain compared to chemo: Each infusion averages around $30,000. YIKES. The monthly Lupron injections aren’t cheap either; they’re billed at $3,938.

I suppose what I’m trying to say is that I’m really freaking glad I switched my insurance to the primo plan for 2021, especially given the unexpected number of procedures I’ve had. (A re-excision on top of my lumpectomy, two port placements, etc.) I’m glad I don’t really need to worry about these numbers. At the same time, I’m horrified by these numbers! What if I didn’t have good coverage through my employer, or any coverage at all? I paid a couple thousand dollars out of pocket in late 2020 as I was working my way through the tests leading up to my diagnosis but didn’t have the good insurance plan; what if I couldn’t afford that? It’s appalling.

Let me be clear: I can easily afford this $77 pathology payment that just came in the mail, and lots more like them! Steven and I are very lucky to be in a sound financial position, with ample savings. I’m not bemoaning having to pay for my care. But I am thinking about healthcare in general, and insurance, and what it means to tie your healthcare to your employment.

Anyone who knows my politics probably knows how I feel about healthcare in this country. I believe—and have believed for a long time—that it is a right. It is obscene that Americans forego routine (and not so routine) medical care because they can’t afford or access it. It is obscene that we see a story about someone raising hundreds of thousands of dollars through a GoFundMe to cover medical expenses and treat it like an inspiring anecdote and not the bleak, appalling testament to this country’s fundamental moral failures that it is.

Me getting cancer and seeing the numbers didn’t change my views on healthcare. I don’t need personal experience to empathize with others. Maybe you do. If so, here’s a thought experiment. What if Steven and I had both lost our jobs in 2020? What if my diagnosis coincided with COBRA running out and us losing coverage? What if we hadn’t gotten on the exchange yet? What if we depleted our savings on my surgeries and then decided to forego chemo because we couldn’t afford $30,000 a pop? What if my cancer came back because I didn’t do chemo? What if I died because I couldn’t afford care?

Nobody should suffer and nobody should goddamn die because they cannot afford healthcare. Not here, in the wealthiest country in the world, and not anywhere. It is a moral failure of the highest order. Remove tax breaks on giant corporations, start taxing churches, raise taxes on the obscenely wealthy. Tax me more. I don’t care. I will pay more today so my neighbor doesn’t suffer tomorrow. Because I cannot—CANNOT—abide someone worrying about finances on top of worrying about their goddamn life.

And you can thank a $77 bill for this rage-post about healthcare. #sorrynotsorry

THE HAZE.

Maybe it’s just the vaccine side effects making things worse, or maybe chemo truly is cumulative, but round 3 is not treating me well. I had my third infusion on Tuesday and began feeling unwell the very next day. Excuse me?! So much for the two-day reprieve I usually get.

It’s hard to explain how chemo makes me feel other than to say it’s a pervasive, systemic, entire-body case of the blahs. Aches in my legs and pressure in my head. Discomfort in my stomach, with the occasional pang of nausea. Brain fog and slowness. A buzzing in the ears; a speeding-up of the heart. General fatigue, everywhere. An aversion to most food, and the sensation that my mouth and tongue are covered in something thick and fuzzy.

I spend a few days in a haze, hoping no single side effect becomes acute. I respond to emails, slowly. I rouse myself for walks, slowly. I find a gentle yoga practice and complete it, slowly. I have one or two days where I can’t do much except lie around and read or watch TV, and I just give in to the lethargy. I skip the weekly video calls that have sustained me during the pandemic, and I turn down offers to chat with my sister. I let texts go unanswered for too long. I don’t have the energy or the strength to be present.

These days of nothingness usually fall on the weekends. I’m simultaneously grateful they’re not happening during the work week, and also resentful that my weekends seem to disappear behind me, lost and unmemorable but for a sense that I didn’t do much and didn’t feel very pleasant. The haze.

A brown tabby cat sitting in front of the window, gazing over her shoulder, with her lip caught in her fang.
Mattie the Cattie being cute, to lighten things up.

Steven wants to pinpoint and attack every one of my symptoms. I can’t blame him; I know it’s difficult to watch someone you love suffering. He offers medication when I mention something specific that’s bothering me, and sometimes I take him up on it, but acetaminophen doesn’t touch my headache, and also the headache isn’t THAT bad so what’s the big deal? I can manage. The headache is just a small part of the haze. I try to explain that my stomach feels upset, but it’s not actually nausea, so I don’t need a Zofran. We get into an argument about nausea vs. upset. I firmly believe there’s a difference; he says he’s always experienced them as one and the same. There are no winners in this argument. He thinks I’m resistant to taking medication (often true) and just wants to help; I just want to convey that the haze won’t dissipate with a pill. There is no anti-haze medication that will pull the cobwebs from every crevice and leave me clean and invigorated. It just takes time, time for my body to expel the toxins and build itself back up. I’ll get there, eventually.

I don’t want pity. I’m doing OK! Today chocolate tasted good and I ate half a bar in one go. (A minor caffeine high fueled this little burst of writing, but it’s already wearing off.) The sun is pouring in through my living room window (see photo of Mattie above), and although it’s chilly outside, I can see buds on the trees and growth in the garden. I will probably feel worse tomorrow, but then I will feel better.

I’ve documented all this before, during previous rounds. Apologies for the repetition. I’m trying to capture the experience in real-time, just a little bit, for Future Me. Because as difficult as it is to imagine right now, when I’m in the thick of it all, I have to believe that there will come a time when my memories of this period of my life will be—forgive me—hazy.

VACCINATED (PART 2).

Who has two thumbs and has had two doses of the covid vaccine? THIS GIRL!

I got my second dose yesterday morning and it was uneventful—the way a vaccination should be! On the way home, we took a detour to Brewing Good Coffee Company for celebratory fancy coffee drinks. (Their roastery has an open-air coffee bar that’s very pandemic-friendly.) I’m sure I’ve said this before, but coffee tastes absolutely vile during most of my chemo cycle—all bitterness with no flavor. (Good thing I weaned myself off it prior to starting chemo.) I get a few days’ reprieve toward the very end of the cycle when my taste buds have returned to normal, and I’m happy to report that yesterday’s cafe au lait with steamed oat milk was perfectly delightful. We also picked up a bag of beans (for Steven) and a couple cans of their nitro cold brew, which will be perfect for the warmer weather. I’m curious whether cold coffee will taste better to me than hot coffee—in general I find that hot food loses its flavor more than cold food does.

By early evening, my arm was super sore, and around 9:00 p.m. the second dose side effects started hitting. By the time I went to bed, my heart was pounding, my body was achy, and I had the chills. I took a benzo to help me sleep (if nothing else, chemo has given me a well-stocked medicine cabinet… the lorazepam is good for nausea, anxiety, AND insomnia!), but it didn’t knock me out the way I’d hoped. I spent a restless night drifting in and out of sleep, feeling sore and uncomfortable. But by the time I woke up, I could tell the worst was over. By about 24 hours post-vaccine, I was feeling almost entirely back to normal but for a very small lingering headache.

All in all, I can’t complain! I slept(ish) through the worst of the side effects, and compared to chemo, they were really quite mild. Totally worth it.

Although I don’t intend to alter my behavior too much once I’ve reached peak immunity in a few weeks, there is one thing I want to start doing: Grocery shopping. Sounds silly, but man do I miss it! We switched from in-store grocery shopping to curbside pickup from Wegmans after my diagnosis, and I’m so over it. I have the utmost respect and gratitude for the in-store shoppers who go through our list and message us to arrange substitutions, but it’s frustrating to have someone else pick my produce—and I hate all the plastic it entails. I can’t wait to get back in the store and break out my reusable produce bags for apples that are not riddled with bruises, cuts, or brown spots! Wegmans has an awesome scanning app you can use as you shop, which tallies up your purchases as you go, and then you just pay the total at a self-checkout machine. There’s no human interaction and no need to get close to anybody. I’ll feel pretty safe shopping that way (although I will avoid stores when my white blood cell counts are at their lowest). Ahh, the little things in life! 🙂