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.

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.

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.

FOLLICULAR FAREWELL.

Well, it happened: My hair fell out.

Most of you will know that I’m no stranger to a bare(ish) head. Back in 2015, a friend and I got twin buzz cuts as part of a fundraiser for St. Baldrick’s, a nonprofit that raises money for childhood cancer research. Truthfully, I’d wanted to experiment with a super-short haircut for a while, and the opportunity to do so while also fundraising for a very good cause was irresistible.

Long story short, I freakin’ loved the buzz cut. Never mind that family members wondered why I wanted to “look butch.” (Oh, I dunno, because it made me feel like a powerful badass?) Never mind that everybody had always cooed over my naturally curly hair, showering me with compliments. Shaving my head was a big middle finger to all of it: The rigid standards of beauty women so often get locked into; my own tendency to hide behind my hair, to shrink away from showing myself. Buzzing my head made me walk differently and talk differently and move through the world differently. It was just me and my stupid face, unapologetically forging forth. I learned confidence and power and pride from my buzz cut.

I liked it so much I did it again a year later.

So you can imagine that, when I learned I’d need chemo, hair loss was not a side effect that particularly concerned me. (With a caveat that, yes, of course a shaved head =/= a bald head and a shaved head =/= all the other body hair loss.) I was a little irked that, after five years of various very short cuts, I’d finally decided to grow it out (#pandemicproblems) only to be thwarted by the C-word. I think my hair knew it wasn’t long for this world; the week I learned about chemo, I had some of my best hair days in literal months. (My fellow curlies know the pain of our fickle locks.) I snapped a few selfies and waited. I’d heard the horror stories of waking up to find chunks of hair on one’s pillow, but curly hair doesn’t really behave like that (my curly hair doesn’t, at least): I don’t shed much, because the curl pattern holds individual strands together. It’s only in the shower, when I comb through my wet hair, that I lose whatever dead pieces are waiting to fall out.

A week and a half ago, on Day 12 of my first chemo cycle, I was idly running my fingers through my hair to pull it back into a ponytail when I realized more than a few strands had come out. Hmm, I thought. I finger-combed my hair some more (basically an invitation for frizz, so not something I ever usually do with dry hair). Out came more strands. Welp, I thought. Here we go. I almost asked Steven to buzz me right then, but I figured I could wait a bit. Instead I took a shower and watched with interest as a small rodent’s worth of shed hairs accumulated in the corner of my tub. I honestly thought I’d get out of the shower and have visible bald spots, but no: I could tell my hair was a little thinner overall, but it looked pretty normal.

On Monday, though, things accelerated: I’d idly pull a curl only to have it come out. I started standing over the sink for a few minutes every hour or so, gently running my fingers through my hair and collecting the fallen strands, watching in morbid fascination as the pile quickly grew. I have fine hair, and I never thought it was particularly thick, but I clearly have a lot of it: It took a lot of loss before it was noticeably thinner!

I knew this sort of idle plucking was not sustainable, so the Monday before last, Steven sheared and buzzed me.

I’d never been buzzed without a guard, and the sight of my near-bald head threw me a bit. It was jarring, and I felt sadder than I thought I would. I’m familiar with my head shape, sure, and I know what a buzz feels and looks like, but this was different. This was just the tiniest, shortest remnants of prickly stubbly bits. It was tiny pink spots all over the back and sides of my head, where enough hair had already fallen out in one spot to be completely bald.

For a while my head felt like the hard side of a piece of Velcro and I did not like it. It stuck to the pillowcase, and pulling on a hat was sensory torture. I knew it wouldn’t last long, though, that soon the stubble would fall out and I’d be pink and soft like a baby.

Me today, with my fresh catheter insertion incision visible on my neck.

That’s where I’m at now… almost. I’m on Day 3 of cycle 2 and I’ve got a mostly bald head, with some patches of stubble that refuse to come out. I get the most hair loss in the shower, but I’ve had to slow down on those thanks to all the port procedures. So it’s a slow process of loss. I’ve worn hats most days, not out of shame or anything, but because my dang head has been cold! (Good thing I’m a knitter and have lots of hats lying around.) It’s only been in the last few days—during a blissful bout of 70˚ weather—that I’ve rocked the bald look out in public (well, walks in my neighborhood) and on work Zoom calls.

The whole thing is giving me a complex jumble of emotions. For the first time since my diagnosis, I’m starting to actually look sick—like the culturally recognized stereotypical cancer patient. But the truth of it is that I’m less sick—chemo drugs aside—now than I was three months ago! Up until January 6, I looked exactly like my normal, healthy self, with a full-on head of healthy hair… while I had a LITERAL CANCEROUS TUMOR growing inside me. That is sick.

Even post-surgery I’ve never appeared sick, I don’t think. My lumpectomy and sentinel node biopsy scars have never been visible to the average person, because it’s winter and I’m covered up all the time, and they’re low enough that they’ll never really show unless I’m wearing a swimsuit or something particularly low-cut. So I’ve never really given off a “sick person” vibe, until now. And yet… I have fewer cancer cells (I mean, hopefully ZERO cancer cells, but the uncertainty is why were’d doing chemo) than I’ve had in, maybe, years!

It’s kind of a mind trip, and it makes me think about how we as a culture view illness and sickness and even disability, how we latch on to simplistic and obvious signposts like baldness and wheelchair use and the presence of hearing aids and use them to create narratives in our heads about the person we’re seeing. The result, of course, is a reductive and unhelpful view of disability and illness, one that has no room for invisible disabilities or illnesses and that has a hard time with nuance—with good days and bad days, with a fat body also being a healthy body, with mobility aids one week and people walking “just fine” the next. Humans crave easy categorizations, I think, but life is rarely easily defined. We live it in the grey areas, in the nuances.

…so, yeah. I’m quickly going bald and I have a lot of thoughts about it. 😀

PORTia.

Hello, ’tis I, your favorite cancer blogger, comin’ at you live from a post-procedure drug haze! I’ve just returned home from getting my port placed!

(For the blessedly uninitiated, a port is a medical device implanted under your skin, with an attached catheter that leads to a vein in your neck and down into your heart. It allows your oncology nurses to deliver those sweet, sweet cancer-killing drugs to a ready-and-waiting medicine delivery site rather than place a new IV line every time. Since some cancer drugs can damage your veins, it’s generally preferred to using a peripheral line in the more delicate veins of your arm.)

If I’m being honest, having to live with a port for the three months of my treatment is making me more anxious than the treatment itself. Irrational, I know, but the thought of a lil catheter just hanging out in my neck—not to mention the portal itself, which is a dime-sized bump fully visible under my skinny-ass clavicle—makes me wanna retch. So I was not excited about my outpatient procedure this morning. Folks kept telling me it wouldn’t be so bad; it’s a gentle procedure compared to what I’ve been through so far, blah blah blah, but when has logic ever mitigated anxiety?! Plus, I wasn’t grossed out by the procedure, per se, but rather the aftermath: the device that will very visibly live under my skin for 12 weeks.

Joke’s on me, because I should’ve been worried about the procedure TOO! I knew I’d only be lightly sedated, but I assumed I would at least be sleeping. LOL NO. They wheeled me into the cath lab–not the beautiful bright OR to which I’ve grown accustomed, but a slightly older-looking room decked out with a massive screen hanging from the ceiling to display my vitals—and started swabbing me, ultrasounding my neck, and prepping me for surgery with not a single mention of a sedative. My very sweet nurse, Sandra, kept telling me it was OK; not to worry; etc., but my nervous system apparently isn’t connected to my ears because I couldn’t stop shaking and, ugh, even crying a little bit.

Me, back home, covered in iodine stains and with a rogue EKG sticker I did not know was there until I saw this photo.

(A pause here to gratefully acknowledge the medical professionals with bedside manner. Two of the nurses in the cath lab had it. One very much did not. I seriously don’t know how a human being—regardless of profession—can just ignore another human being’s pain without at least acknowledging it or pretending to care. Like, I get that you have a very important job to do, Becky, and I’m glad you’re doing it, and I want you to give it your full attention, but a pat on the arm or a cursory “You’re gonna be fine” would go a hell of a long way when you have a freaking 33-year-old woman getting a port inserted ahead of her chemotherapy regimen. I hope Bedside Mannerless Becky is treated more kindly if she’s ever sick.)

Finally the doctor came in and they did the pre-op time-out to verify who I was, what I was there for, and all that jazz, and then I heard Kind Nurse Sandra say the blessed words: “I’m going to give you that sedative now.” A brief stabby feeling in the IV (drugs always feel cold and pinchy going in!), a moment where I thought, panicking, that they weren’t working, and then—sweet, sweet relief. Versed and fentanyl, ahhhh.

An excerpt from my drugged interpretation of events:

Everything’s gonna be OK. It’s totally cool that there is a blue paper tent over my face and I can’t see anything at all and nobody can see my face; I’m just a square of neck and chest right now, nothing more. Just a body ready to be poked and sliced. Ah, the ol’ pinch of the needle going in. How many times have I felt that so far on this ~*~journey~*~? I tell the doctor that lidocaine sometimes makes me shake, because it seems like important information. He does not seem impressed. I feel a lot of tugging, and poking, and tapping. Is that the port going in? Now they’re at my neck and I hear someone ripping something after asking for a catheter of a specific diameter (at least that’s what my brain interprets the request as; it could have been literally anything else). More poking and tapping and tugging. I realize that, despite the doctor saying I’d doze and probably not remember details from the procedure, I’m definitely awake and present. I have a feeling the memories will stick. The doctor asks for sutures and tells me he’s sewing me up. I ask whether they’re dissolvable and he says, yes, they are absorbable. I wonder why he had to make that verbal distinction, dissolvable vs. absorbable. You know what I mean, BRO. That odd tugging feeling as he pulls the sutures through my skin. I feel myself being wheeled a few feet away from my initial position. Someone thanks the doctor; the door opens and closes. Apparently we are done and he is gone. The tent comes off my face; the oxygen comes out of my nose; Bedside Mannerless Becky wipes me off a bit. They ask me to scoot back onto my gurney; I do. I apologize to the nurses, thanking them for tolerating my mini-breakdown. BMB pretends to care and wishes me well. Down to the PACU I go.

Now I am home, still riding a gentle wave of Versed and fentanyl, trying not to move my neck because the catheter incision site feels so weird! Not painful, but slightly sore and just… noticeable, every time I swallow or even breathe too heavily. (The incision on my chest might as well not be there, for all I notice it, although the port itself is very much visible and present.) I’m trying to down as much water as possible to rehydrate after not drinking or eating anything since about 10:00 p.m. last night (save cranberry juice and crackers in the PACU). The sensation every time I swallow, though… oy.

In retrospect (you know, three hours later), I can of course realize that the procedure itself was not particularly painful or invasive, beyond the mental anguish caused by imagining a catheter being threaded down my neck. So if you are reading this at some point in the future ahead of getting a port placed, please don’t fear! Learn from my mistake and take some goddamn anti-anxiety medicine ahead of time, or ask your nurse for one once you’ve got your IV placed. Or maybe ask for just a liiiitle more power in the ol’ sedative combo so you’re ensured a trip to Dreamland.

(P.S. On the suggestion of my friend Kristina, I have named my port to help endear her to me. Kristina suggested PORTia, which is obviously perfect. So, PORTia, welcome to my body! I hope you find it a hospitable home! Despite all my whinging and anxious rambling, I am glad you are here.)

WHERE I’M AT; WHY I’M HERE.

I shake when I’m anxious, sometimes.

Not all the time. But when news is coming at me fast and hard and it’s not the good kind of news, sometimes my body starts shaking and I can’t stop it. It’s probably not visible unless you’re close to me, but I sit there vibrating like a nervy chihuahua, teeth chattering unless I clamp my mouth shut nice and tight. (I also get sweaty hot chills, which sound like a contradiction but are entirely too real.)

I’m pretty sure I shook on November 11, 2020, when my doctor called to tell me—in a gentle, kind, yet clearly surprised tone—that I, an otherwise healthy 33-year-old, had breast cancer. I had to have shaken, and I had to have sweated. But the thing is, I don’t really remember my physical response. I don’t really remember my emotional or mental response, either.

What I do remember: Sitting cross-legged on my bed with a pad of paper and a pen, jotting down words that had only existed in the abstract for me until that mid-morning phone call.

Invasive ductal carcinoma.

Breast surgeon.

Tumor.

< 1 cm?

Cancer. Cancer. Cancer.

I hung up and I told Steven and he cried but I don’t think I did, at that point, and then I called a few breast surgeons and I tried to figure out what to do next. I called my parents and told them. (Can you imagine? Telling your parents you have cancer? It’s obscene.) I told my boss. I told my friends.

I wanted to tell everyone, actually. I typically tend more toward privacy and I’ve never been an over-sharer, but this—this I wanted to share. I wanted to whisper-scream it at everybody (except the written version of whisper-screaming, because it was the middle of a fucking pandemic and I was not seeing anybody except Steven in the flesh). I wanted to tell everyone I knew that I—healthy, active Kelly—HAD FUCKING CANCER. And if I—hale and hearty me!—can have cancer, then YOU CAN TOO. It felt like a public service. A warning only I could provide. Do your self-exams, folks, because the big C could be comin’ for you too.

In the three months since diagnosis, that urge has mercifully subsided. I’ve still been talking about my cancer, of course, but less in the “I HAVE CANCER AND YOU CAN TOO” way and more in the “Ugh, I had this appointment with my oncologist today and it was so frustrating because they still don’t have my full pathology results back yet and I need to know what my next steps are going to be!” way. I share information in a bunch of different individual or group text/WhatsApp/Telegram threads and via Slack and Google Meets and email and the phone and it’s hard to make sure I’ve updated everybody with everything.

Early on, I thought about ways I could disseminate updates more easily. My Seattle-based brother—clearly wanting to find some way, any way, to help from afar—put together a list of distribution strategies I could use. I read them, and mulled over them, but ultimately didn’t take any of them. The piecemeal updates were working OK, I thought, and it felt so self-important to create an account on one of those “I have cancer; come here to read my updates” sites or to start a mass email list for updates. (We can unpack the implications of that particular notion later.) Plus, for a while, it seemed my treatment would be relatively simple: surgery and radiation, and then we’d call it a day. Piecemeal was fine. I could augment it with the little personal writing project I have going on the side, and maybe some paper journaling, and it would be fine.

Things have changed a bit, though. Turns out that my particular cancer will benefit strongly from chemotherapy; I will measurably reduce my risk of a distant recurrence (a metastasis, which is frankly one of the most terrifying words I know) if I go through four cycles—three months—of chemo. It’s an easy decision for me. I’m 33. I hope to have lots of life left. I want to do everything I can to prevent a recurrence. Chemo it is.

The news that chemo would help came on a Wednesday. By the end of that day, I had four appointments scheduled: a covid test, a virtual “chemo education” consult with an RN, a procedure to get my port placed (gag), and my first infusion. It’s all happening within a week of that Wednesday appointment. It’s moving fast. And as it’s moving, I’m realizing that maybe I do want a more public outlet to talk about what’s going on, to share updates as I welcome these toxic drugs into my body and invite them to do their worst. And where better to share than a blog? I’ve always loved a blog!

So here we are, three months plus one day out from diagnosis. I wrote most of this post on the three-month anniversary, and let me tell you… diving back into those diagnosis-day feels is always, always tough. But more about that later, I’m sure. Right now I’m going to wrap this up and read the Docetaxel + Cyclophosphamide (TC).pdf packet I just downloaded from my oncologist’s office. Because that, friends, is my life these days.