I watched 100% of the College World Series while I recovered from my quick lumpectomy, reduction and lift.
If ESPN had been in the market for a different perspective on the proceedings, maybe a dreary, black-mooded color commentator who talked less about thrilling draft prospects and more about phantom lymph node pain, I would’ve made an excellent hire.
I sat in an armchair moved out of its usual corner habitat and oriented at the TV. My legs were propped on a mismatching ottoman from the other room. Water and Tylenol and tea and a book I was pretending to read were stationed on a small table beside me. My heating pad lined the back of my chair, and sometimes the most industrious thing I did in a day was to move the setting from high to medium when the heat, as it does, changed from soothing to just hot.
Weeks later, my two middle kids would ask me to stop sitting in that chair. I seemed recovered and capable of returning to the sectional, and by extension, life. They found my constant return to that seat triggering. But I was attached to the habit of my chair. Like wearing maternity pants well past delivery and then waking up one day to realize your infant is nine months old and it’s time to start wearing zipper pants again.
Before it became a habit, back in that first post-surgical week, I sat in my chair and wallowed. I felt less lucky than I had before the surgery. Surgery had been the thing to get through, and once I got through it, I felt hurt and bad for myself.
So I let baseball game after baseball game swallow me. The screen popped bright and summery. And for those 2-3 hours of playing time, health issues didn’t keep score. Young and vibrant collegiate players seemed invincible, contorting reliable bodies to do fantastical things to catch, hit or throw a ball. Each so blessed with collagen and good looks that they could afford to squander some of those riches on ugly mustaches.
And behind them, the reassuringly sold out stadium, stands filled with people who were just out in the world having a nice day. I mean not everyone they showed on the screen looked healthy exactly. The lens would always pan to a guy devouring a pound of brisket who absolutely should not have been devouring a pound of brisket — cameramen can be brutal. But still — that brisket-eating guy was there, at a fun game and, for the time being, living.
Comforted by the aggregate Just Fine-ness of the crowd, I got lost in the slow details of the game. I focused on how a good catcher frames things, catching what would otherwise be a ball and deftly bringing it up to the strike zone. I kept thinking that was what I should be doing — taking a crap pitch and making it look better, helping everyone call this something other than what it was, bringing my team closer to winning.
I remembered talking to a friend shortly after her own cancer diagnosis years before. She didn’t want a mood board for cancer. She didn’t want to navigate illness in some specific or inspiring way. She didn’t want to be a warrior or some admirable sufferer. She just wanted to see her kids graduate from high school. At least.
I’d understood her when she’d said it. And now I understood her even better.
There is a strange cultural wrapper around cancer. It’s as if in trying to make things bearable, we over-correct, assigning expectations and ideas of nobility. Maybe cancer doesn’t suck. Maybe it’s epic!
For some this kind of language might really resonate, even lend strength. If it’s useful, it should be used. But for me, the cancer vocabulary didn’t feel like it fit. Mine had been very early stage — I didn’t think I was entitled to use the same words of people with later stage cancers. It felt like — I don’t know — a copyright infringement.
More, I just didn’t like these words.
I didn’t want to be on a journey — that sounded long. And like it might end someplace far from where it started.
And I didn’t want to be a warrior — that suggested a really tough fight, possibly one that was wanted or sought. But I hadn’t gone looking for a fight. The fight had found me, and once it did, I just did 100% of what I was told to do. I didn’t make tough choices. I didn’t forego pain meds. I didn’t maintain a plucky mood so everyone around me could think I was doing a beautiful job with cancer. I wasn’t brave. I was dainty and terrified about my body. I twice got stuck halfway out of a sports bra because the removed lymph node site under my arm was too painful to move in any direction that might’ve got me all the way out of the sports bra. I guess that was a battle of sorts?? But if so, it had been my husband’s to win because he was the one to extract me.
Above all, I wanted to survive — obviously — but I didn’t want to be a survivor.
Besides, I’d already been a warrior on a journey that I’d barely survived. I knew deeply how these words worked when they were living up to their true meanings. I’d spent seven years in combat with my youngest’s mortality. It had been hourly and horrifying and stuffed with all the features of a really tough fight, like pit of the stomach hopelessness, serious contemplation of giving up and heavy rotations of why me, why him, why us.
My diagnosis and treatment didn’t feel great — at all. But it didn’t feel like that.
I will tell you — though I’d prefer you didn’t tell cancer I said this — there is one way my treatment did feel. And that was excessive.
Before my surgery the offending spot was estimated to be 4mm. When actually removed, it was discovered to be half that size. This isn’t a hard and fast medical opinion — though I have untrained loads of these! — but given that this unfriendliness was the size of a crayon tip, I believe it was about as small as it could be while still being findable.
This had been a speck of cancer.
But it was considered a GIANT problem.
My post-surgery pathology was all clear — they got the whole Crayola nib, they got clean margins and my lymph nodes were benign. But I’d still need radiation. And I’d still need to take tamoxifen for a decade to prevent distant cancers, medicine’s poetic way of terming cancers that crop up in places other than the original site.
Was it overkill? Who could know. What was known was that it could kill you, so over was the only way. But I kept thinking it was a carpet bombing. Like tenting your house and fumigating it at the site of one small ant. A deadly ant, yes, but one that you’d already killed.
And hey, if something this small could be so dangerous, shouldn’t it have already been making me feel terrible?? Achy or tired or slow? But I’d felt just fine while my cells got up to their extra dividing — that very thing they’d been expected to do to ever get me going in the first place now a decidedly bad endeavor.
Since I didn’t feel this tiny spot as an injury, the avalanche of treatment required was all the more insulting.
At a follow-up appointment with my Bright Oncologist, I tell her all of this. I tell her I don’t feel like I’m getting any credit for my excellent pathology. I could’ve barely done better on any of these tests, and yet I’m not on the dean’s list. I got a 5 on the AP, but I still need to take the class.
She sits like a task lamp on a desk, alit and warm and trained on the work that needs to be done. She points to my final Oncotype report. Did I see where it said no chemo recommended? This meant I was the valedictorian.
She’s helpfully matter of fact about my protocol. I just need to do what I need to do. I think of the people in her waiting room, hollowed and hallowed, and realize I’m probably one of her happier appointments of the day. We’re not talking about something dire. We’re talking about having to do some stuff that sucks in order to keep living a great life. Big deal.
Maybe because I’m lighter fare, my Bright Oncologist and I talk for what has to have equalled at least two appointment slots. We talk about my cancer, cancer in general, my grandmother, my youngest’s epilepsy, my hair, her kids and a couple of TV shows.
I don’t know what I expected an oncologist to be like, but she’s not it. She seems too bubbly for this line of work. To wit, she tells me she no longer admits she’s an oncologist at cocktail parties. It either causes record-scratching silence or an onslaught of sad stories. She now tells people she’s a physical therapist and just enjoys her drink.
I tell her how rampant this diagnosis feels. Two of my MRI techs at two separate clinics had had breast cancer within the last two years. So had someone in the life of just about every person I’d told of my diagnosis. I had deep and ready resources everywhere in my life about chemo, radiation, tamoxifen.
This dims her for a bit. She knows. It is not my imagination, this surround effect. I ask if this is because of early detection — that we’re finding cancer earlier so it feels like there’s more of it. She says no, the numbers are just rising. The peanut allergy effect. Both sudden spikes explained in a variety of ways. Both with a root none of us wants to think about it, how the trashing and plasticification of a planet invades bodies. How we have yards without weeds now, but really we’ve just sent the weeds to be invasive species inside of us instead.
My Bright Oncologist and I discuss my paternal grandmother because she had what must have been a similarly early stage breast cancer when she was slightly older than I am now. I never knew many of the particulars. It was my grandmother’s story, and I don’t think she told it widely, but she most definitely didn’t tell it to a young me. I just grew up knowing she had one breast, a fact of her as plain as her tawny, once-a-week-salon-styled hair or that she never wore denim a day in her life.
When she died at 90, it wasn’t from breast cancer. Her breast cancer had been a discreet episode, dealt with and forgotten, seemingly remembered only on the family history forms I had to complete before my frequent breast screenings. Her case coupled with my dense tissue earning me my high surveillance status.
In the weeks before and after my surgery though, my health history form came to life. I thought about my grandmother constantly. I realized I’d done more of that dummy conflating, mistaking everyone else’s forgetting with her own.
Had she been as non-plussed by it all as she’d seemed when she was making us elaborate seated dinners, more utensils than you could need in an average week flanking each plate? Did she really care that much about keeping a tidy house, or was she trying to put order to something deeply disorderly? Had she been a born worrier or had she learned to worry? When she told us to be careful doing innocuous things, was it because she’d lost a piece of herself and knew something we didn’t: Bodies could go through it. Bodies didn’t always stay whole.
As I sat recovering in that triggering armchair, I pictured my grandmother sitting and recovering so many years before me. I imagined her adjusting to a different body in a different time, when breasts were somehow more private or sexual or embarrassing, and so not a topic for polite conversation or substack newsletters.
I’d guess, like me, my grandmother would’ve been a candidate for a present-day lumpectomy. I know a present-day care team would counsel a woman against finishing treatment with just one breast. A partial solution if ever there was one.
My grandmother had been cured — she lived decades longer — but fundamentally changed. She’d received health care that seemed to only take physical health into account, any other sort of health left for her to sort through on her own. These thoughts made me ache in a place my prescriptions couldn’t reach.
My own experience had shown how time and innovations have shifted standards of care. I had left surgery altered, but not incomplete. I didn’t elect for reconstruction and a lift — these were a given, a necessary part of my necessary surgery. And every doctor along the way asked me how I was coping, offered me time with a social worker, wanted me to rate my distress level on a scale of 1-10.
Relative to my comprehensive treatment, my grandmother’s good, solid cancer-eradicating care fifty years ago now seems borderline barbaric. This is the thing about medicine — it advances, relentlessly, miraculously. So what about our current breast cancer care will seem borderline barbaric to our granddaughters? They took your lymph nodes *out* to biopsy them? They radiated your tissue, the tissue right near your heart, just because a little speck, since removed, used to sit there? You needed to take a tamoxi-what? For a decade??
A month after my surgery, I went to get mapped for radiation. Lying in yet another giant machine, a camera at my feet dissected my chest into quarters. The screen flashed with coordinates, locating the waters where that now-sunk Battleship had been moored. The pattern of my breathing was tracked and recorded. The radiologist told me my inflated lungs would cushion my heart as they ionized my tissue. It sounded flimsy. It sounded like my heart was at risk.
Mapping involved all of the highest of tech, the kind that makes you marvel at what humans can do and build and figure out. Until the final step, that is, when the technician took a picture of me with a digital camera like the one I used to snap my way through Italy in 2001. This throwback took me aback, reminded me this process might still be a work in progress.
Later, my online chart would populate with an after visit summary detailing changed tissue and details that sounded a bit concerning. I didn’t know if these findings were expected or standard or even tolerable. But the doctor didn’t call me to discuss anything so I concluded it must all be okay enough. This was another thing I’d learned about medicine: advocacy required inquisition and then sanity demanded a limit on that inquisition.
On the same day I got mapped for my radiation, my youngest had his routine echocardiogram across the city. To maintain access to the drug that changed his journey, the drug that makes him a survivor, my son’s warrior heart must be checked every six months at a hospital he calls the Beautiful Place. I used to think he only meant this because the building was sparkly and new, opened in the middle of his darkest years, bright, gleaming and manicured, looking filled with solutions. I used to doubt he understood the layer of beauty — tucked right below necessity — that I saw. Now I think he’s known all along.
At these appointments, he lays in a dark room as they gel up his chest and thorax. For years, standing beside him on the exam bed, I’d sweat. It was a legitimate workout to get him to be still, to convince him to endure the goopy feeling all over his tummy, his heart, his neck. And I’d be anxious. If that wand looked around in his small body and found thickened valves, our magic spell would be broken.
I’d heard of kids gaining seizure control but made to leave the clinical study because their heart valves had thickened. On its own, when I held my son as a fresh newborn, if someone had told me I’d ply him with a drug that could thicken his heart valves, I wouldn’t have believed it. I would never willingly ruin his heart! But as his epilepsy raged, trying to ruin or outright take his life, I’d harden to scary side effects.
Because medicine is always a game of would you rather. Every solution comes with a list of potential problems. You’re forced to judge trade-offs, determine downside tolerances. And it is always downside. There is barely ever an upside with these side effects. Honestly, as far as I know, Latisse and Ozempic are among the few drugs with side benefits, as in Watch out: this drug might make you gorgeous!
I no longer sweat at my son’s echocardiograms. I just sit beside him and check my phone while he and his valves readily comply. “Yuck,” he tells me here and there as more gel plops onto his chest, but he stays still. He now knows this is just something he has to do. Big deal.
Driving home from the Beautiful Place, I look at my healthy and happy son chomping an apple in my rearview, taking bite-breaks to read me billboards and street signs, another miracle in his canon. Fading behind us, a city filled with complicated machines and people who know how to use them, specific chemical compounds that enter bloodstreams and do just the right things, a metropolis of medicine serving fortunate citizens like us.
This is how it would go during my post-surgical month — I would marvel at my care, bask in gratefulness, and then suddenly feel burned.
Since I was not allowed to run, I went on annoyingly slow walks, unable to outpace the dark and dramatic thoughts hovering over my head.
I don’t feel like myself.
I think I’ve been robbed at knife point.
I don’t know why any of this happened.
Of course, I don’t know why I was I still trying to find a why. There was no why. There never is. Bad things happen and good things happen, and they’re not evenly distributed. They cluster — in spans of time, in locations, in people.
I am uncomfortable and changed, but also healing and Just Fine. I should probably just get over it. Certainly and absolutely, there are people dealing with far worse things right now. I know plenty of them. Truly, to be middle-aged is to be surrounded by people improv-ing their way across some stage of grief.
But still. I ping-pong, unable to stick on the Just Fine, spiraling through the Why, wondering what anything ever ends up meaning anyway.
Weeks into recovery, I take my older son to an appointment with my Primary Care Doctor, the one who held my hand at the bottom of the ocean when this whole tide came in in early May. This is my son’s pre-college check so we can complete all the required forms and confirm he doesn’t have sickle cell and that 18 years ago, he did well on his newborn screening (huh?).
My son’s departure is a big looming change, the thing I had thought would fully consume me and take my breath away throughout the summer. Until my body came up with its own spectacular and derailing distraction.
My son finishes his appointment and my doctor asks me if I want to chat for a few minutes back in her office. I remember she also did this after his 10 year-old appointment. At the time, my youngest was in a health spiral so she had wanted to touch base about his medication changes, how we were coping. But my son didn’t know that. He was ten. To his eye, I was being called back for a hush-hush conversation right after his own exam. Halfway home, after much silence, my son quietly asked from the back seat what was wrong with him. Of course he’d assumed he was catastrophically sick. Growing up amongst what he had, this seemed a reasonable, even a foregone conclusion.
Now my son is old enough to connect dots. He knows this hush-hush talk will be about me. It’s maybe a little unsettling, but mostly a containable worry. I seem Just Fine.
Back in her small exam room, my doctor asks where I’m at with treatment, how I’m dealing. I tell her I can’t square it all. That I can’t even tell if this was a big deal or not. That everyone’s been telling me I’m lucky. That I, of course, know I’m lucky. But that I don’t feel lucky. I feel unlucky, like a person of clustered bad things.
Steeped in Primary-ness and Care, she listens so fully and calmly. And then she tells me: you are both. You are lucky. And you are unlucky. In this. In all things.
The idea, so simple, feels medicinal.
Curative.
The exact treatment I need.
Yours in the both-ness,
Jen.
There are very few stories that are as long as yours that I will read. Your writing about the human condition is enthralling. Feel great soon and fast.
Nobody captures the nuance of feelings around illness and healing as well as you.❤️