My Boring Cancer. (Abridged.)

I. 

“Are you somewhere you can talk?” 

On October 30, 2023, I got the news. My doctor reached out to me with the results of a biopsy. My stomach dropped, the room reeled, and over the course of that single, life-changing, 10-minute phone call, I went from being a healthy woman in my 40s who was sure this was just another scare – to a woman with breast cancer.

I wasn’t told much on that call, just that my cancer was estrogen receptor positive and Stage 1; they had to wait on more pathology to determine next steps. She used a lot of words I asked her to define. I remember thinking, “Has she just done this so many times that she’s forgotten that most people don’t know what all this means?” From that moment on, for the rest of my life I would either be a cancer patient, or a cancer survivor. I had just been drafted, receiving a lifetime membership to a club to which no one ever wants to belong. Over the following days I wondered if there would ever be another morning when my first thought wouldn’t be “OhmyGodIhavecancer.” (Spoiler: there have been.)

This is not a cancer story for a book. This is not a miraculous Stage 4 recovery, the reversal of a terrifying prognosis, and the blossoming of a new lease on life (well, the last part, maybe a little). This diagnosis felt both gutting and banal at the same time. Take the above sentences: when I got to the part where it said “Stage 1” did you think, “Oh, just stage 1? That’s not so bad.” It’s okay if you did; I get it. In fact, bizarrely, at no point in this story did I truly worry about what I always assumed would be my first thought if I was dealt this blow: was this going to kill me?

While decades ago this diagnosis could be lethal and often was, it was put to me from that first call that this – in 2023 – was something I was almost certain to survive, though they never promise you anything 100%. The heavier and somehow more difficult questions have been more like: What are the ways we’re going to ensure that survival? and Once we get rid of it, how do we make sure it stays gone? I was awash in anxiety around treatment, mitigation, and prevention of recurrence. For a while I actually believed that I would come out the other side and eventually return to my pre-cancer self. Over the next several months, one of the slower, more crushing realizations would be that my old self is a person of my past, and she is going to stay there. There was no way to come through this unchanged, physically or emotionally. It would take me even longer to understand that some of those changes were ones I needed, and wouldn’t have happened any other way.

No, what scared me most at the beginning was what the journey toward being cancer-free would require of me.

While there is never a convenient time to get a cancer diagnosis, this timing felt particularly shitty: I was ramping up for an intense work project and for Pete’s sake, my two kids were just starting to emotionally stabilize after a few years of a global pandemic that hit when my oldest was in kindergarten, and, consequently, a big move out of the city they’d always known as their home. And now this. Now their mom has cancer?! F$#k you, universe. 

Of course, the big question at this stage was: chemo, or no chemo? In that first call, as tears streamed down my face while I furiously scribbled notes, my doctor explained that the estrogen-positive finding in my pathology was “good” – we wanted that. She may have explained why, I don’t remember, my brain was busy melting. Eventually, I came to understand that estrogen+ breast cancer is often easier to treat, and less likely to spread and grow, than its estrogen- counterpart.

But the HER2 growth receptor was the critical pathology we still needed. That news, meaning whether my cancer was HER2-positive or HER2-negative, would determine whether I was going to need chemo. (The positive kind is more aggressive, so is typically met with more aggressive treatment.) Of everything facing me at that moment, chemo was what scared me the most. Images of actresses in movies swirled around my head, withering and pale in those terrible head scarves that screamed illness and death. But I did my best to put on a brave face as my family donned vampire costumes for Halloween the next day, and went trick or treating. 

Miraculously, we were all able to have fun even though we’d told our kids – then 9 and 7 – the night before. Some parents understandably wait a while, but I wanted them to know right away, knowing they would sense something was wrong and worry; I knew I wouldn’t be able to feign normalcy. That first night was the only time I ever saw them cry about it. Somehow I was able to stay grounded as I told them, projecting more strength than fear; you’ll have to ask them if I succeeded. The shock hit hard at first, and we let them sit in sadness with us briefly. As we explained that not all cancer ends in death and my prognosis was great, they dried their tears, let us hug them, and asked what was for dinner. 

A few days later the next worst call came: I was HER2+ and needed chemo. I was devastated. Then the bluster of activity kicked into high gear. I picked a medical oncologist who ended up being the exact right person, I met with her, and I got the first semblance of a plan. Every person with cancer has a customized treatment plan, with different treatments happening in a specific order; for mine, I was instructed to block off the next year of my life. 

II.

In retrospect, I think three things saved my life. 

About 10 months into my first year of motherhood: I started having issues with my breasts. It started with a visit to my OBGYN that included a breast exam. Even though I was still producing milk, she felt a suspicious lump and sent me to a specialist for a second opinion, and then biopsy (and let me tell you, biopsies are hard enough on a non-lactating body, but a core needle biopsy while breastfeeding is next level.) In any case, this began my relationship with a breast surgeon, or as I call her, my boob doctor, who was proved further necessary as I developed infections related to nursing. 

I really liked this new boob doctor; she was one of the best around. But even though that initial biopsy was benign, it was the first of about three I would need over the next several years, all eventually explained by unusually dense breast tissue. Gratitude slowly turned to resentment for the repeated misery of biopsies that turned out to be nothing; I was exhausted by the disappointing bedside manners of some (not all) medical people who would handle my breasts like they were mounds of hardened clay, unattached to a human being. 

I tell you all this not to complain about my troublesome tits, but to set some important context for the larger story. Something else was happening that I could not have appreciated at the time: this continued access to specialists – as annoying as it was – was the first thing that saved my life.

About half of women over 40 are told they have dense breasts, and there’s a spectrum of density. For most of my life, I didn’t think much of it. I started paying a little more attention when they told me this meant I needed to get ultrasounds with every mammogram, making for very long annual appointments (and after all the above fiascos, I went in every year from age 36). I would see my boob doc afterward for a manual exam; the two offices are one floor apart in a Manhattan skyrise. Sometimes I would need another ultrasound at six months if there was something they were watching. For 10 years I did this with no dramatic findings, but a lot of radiology bills. 

My last annual screening before my diagnosis was in March of 2023. In that appointment, I didn’t see the doc herself but instead met with her assistant, who explained that they wanted to revisit my family history and other circumstances, because my updated risk score might determine that enhanced screening should be covered by my insurance. She didn’t name the tool, but I believe it to be the Breast Cancer Risk Assessment. When I mentioned that my great-grandmother died of ovarian cancer, this was new information to them – and it may have been the tipping point that nudged my score into a higher risk category, since apparently there is a genetic link between ovarian and breast cancer. Even after all the false alarms and monitoring, being labeled high-risk was a first for me. And, it was the second thing that would save my life.

That qualified me for an MRI screening six months later; I had a specific window of time to get it, after which it would no longer be covered by insurance. I squeezed the appointment into my packed calendar a day or two before my coverage deadline. It was that MRI – that MRI that I almost didn’t get because what a pain but I did get in October of 2023 – that caught it: my 1.5 cm of cancer. As it turns out, I was the third thing that saved my life – I followed directions, and got the scan. You see, if my little kumquat was present in my usual scans six months earlier, it didn’t show up; another knowledge bomb they dropped on me: mammograms can’t see all cancers in dense breasts. My cancer is lobular (as opposed to ductal) which is a common type that can be harder to spot within dense breasts on a mammogram.

It was because my specialist doctor reassessed my risk, and my refined risk level qualified me for an MRI, that we caught it early. It would have been very easy for me to just wait for another set of standard scans in the following March – but who knows how much it would have progressed or whether it would have metastasized (ie. spread to other areas of my body).

Here is where I pause for a PSA, best summarized by the American Cancer Society (ACS):

“If…you have dense breast tissue, talk with your health care provider about what this means for you. Be sure that your doctor or nurse knows if there’s anything in your medical history that increases your risk for breast cancer…Any woman who’s already in a high-risk group (based on inherited gene mutations, a strong family history of breast cancer, or other factors) should have an MRI along with her yearly mammogram.”

People with breasts, especially dense ones: if your OBGYN or other provider is NOT proactively offering you a Breast Cancer Risk Assessment (and many don’t), then ask for one. You may be at higher risk than you or they realized, and you may qualify for enhanced screening; dense breasts alone not only put you at higher risk for cancer, they can make the cancer harder to find. All you need to do is answer a few questions and know a bit about your family history. (If you don’t know your family history, I’d recommend finding a genetic counselor.)

Most patients don’t have a team of specialists already in place for when they are diagnosed with breast cancer. A lot of people don’t even have insurance when they’re diagnosed. (Please know that if you aren’t insured and you are diagnosed, you may be eligible for Medicaid Breast and Cervical Cancer Treatment Program; every state has one.) Because of my turbulent history of boob issues, I started out ahead of the game: I had a crackerjack breast surgeon. I was well into my cancer journey before I realized how rare that is and how fortunate I’ve been.

Aside from, you know, having cancer.

III. 

Demystifying what it’s like to be treated for breast cancer today feels important, so I give you: my cancer treatment, in two lists. List #1 summarizes the treatment in its five phases, as concisely as I can. If you aren’t particularly curious about that, skip ahead to List #2, which is more personal and covers my main takeaways from the full experience.

List #1: The Plan Itself (at least originally, and in chronological order)

1. Chemotherapy, once every 3 weeks. I did ONE round of docetaxel, and each session is a cycle, so one round, six cycles. With all the prep and multiple infusions, my visits were usually about 4-5 hours long.

2. Immunotherapy, infusions targeted specifically to HER2+ cancer, given along with chemo at first, but initially planned to continue well past chemo until at least the following November (12 months total) every 3 weeks.

3. Surgery, a month after chemo ended. Based on my negative genetic tests (ie. I don’t have any genes associated with breast cancer), the fact that my cancer hadn’t spread at all, and that a mastectomy would not have changed my health outcomes, I opted to get a lumpectomy. It was always my choice; a mastectomy was optional and covered if I wanted one. 

4. Radiation, several weeks after surgery. After everything else above, this was described to me as “the easy part,” and the sessions were quick and painless. The not-easy parts? The two hours of driving every weekday for five weeks for 10 minutes of treatment that involved a lot of people handling my boobs, the nasty rash it caused, and the permanent tattoo dots all over my torso. I did get to ring an enormous gong after my last radiation session, which was a kick.

5. Endocrine therapy, or hormone therapy, started a few weeks after radiation, ongoing for the foreseeable future. This consists of ovarian suppression shots once a month for at least two years, and daily aromatase inhibitor pills that block estrogen for as long as is tolerable to me.

List #2: 3 Surprising Takeaways from My Breast Cancer Treatment

1. The hardest parts of chemo (for me) were not the ones I expected.

My oncologist had made the implantation of my chemo port seem like a cakewalk: some surgeon would wiggle her nose and blink and there I would be with a twinkly bump in my chest like Cinderella in her ballgown. (If you’re as new to this as I was: to preserve the veins of the arm, they directly accessed my arteries through a little device that looked like a mini-pacemaker, surgically inserted under the skin of my chest, on the opposite side from the cancerous breast.) It was jarring, and while I was assured I would get used to the port, I never did for those eight months it was in my body. It became the focus of my vitriol, a tangible representation of the whole ugly process. Probably, in some way, because it was visible to me where my cancer was not.

As for chemo, I braced myself for the givens: lethargy, nausea, and hair loss. And while I did shave my head and was drained some days, the worst part was my changing reactions from week to week, many I’d never heard about. I was prepared to feel gradually worse because chemo is cumulative, but that’s not how it went for me. I had a pharmacy of drugs that mitigated the worst of it, but my effects were inconsistent; some issues I had early on abated, and I had new ones at the end. The whack-a-mole game of chemo reactions – that was the absolute pits. (Steroids, though? Those were fun.)

Most everyone I know who has been through chemo has had different effects but one common complaint: we just don’t feel like ourselves. No matter the sum total of reactions, that’s the real given. We feel off for months. Not sick all the time, just… wrong. And while I was told all my effects would subside within a year, it was more like 18 months before everything truly healed.

2. Even if it’s possible to continue working while in treatment, it’s not necessarily a good idea.

I chose to work consistently through my cancer treatment. I don’t fully regret it, but it was a complicated decision. Before I started, my oncologist said that about 60% of her patients on this chemo found it manageable and some worked the whole time. Before entering treatment I had no idea how to orchestrate my work life around it, because I couldn’t predict how it would affect me. I worked remotely, so theoretically my kind of job was the easiest to sustain during chemo.

I was surrounded by caring colleagues, but I also was facing down a huge work project on which I was the lead. Short-term disability pay is a joke, so taking a leave would have been financially problematic, especially with mounting medical bills. The organization had inexperienced, interim leadership in place, who insisted that they could replace me temporarily if I needed to take time off. Almost insulted by that, perhaps unreasonably, I dug my heels in and assured them I could do it. And I did. And it was. Really. Hard.

As time passed, I came to realize that I had let my job define my value as a human. Like parents everywhere who go back to work too soon after the arrival of a child – I had something to prove, and I didn’t want to be left behind. Well, the universe was listening. After my work project ended, so did my time at that organization, a transition that has been infuriating, poetic, and liberating. It’s given me time to heal and rest, the way I didn’t let myself during treatment. I’ve found my way back to my value again, beyond the grind that I used to think made me whole.

3. Community is crucial for our caregivers too, yet consistent support is hard to come by.

Those of us going through it have every right to get insular, to be tangled up in ourselves, and to keep ourselves comfortable enough to get through the shitstorm that is cancer treatment. As a working mom, my top priorities became managing side effects, keeping my job on track, and maintaining some sense of normalcy for my kids. Everyone around me supported me in naming my limitations.

But my husband? He let me hold him at arm’s length as I moved through the physical setbacks and the dark feelings, sometimes exploding out of me all at him. He had to maintain his job while driving me to treatments, appointments, and scans. While his employer claimed to be supportive they still expected him to do all his work – he was held as accountable as though nothing else was happening in his life. (And don’t even get me started on FMLA.) When my harder days fell on weekends, he had to keep the house together and the kids occupied. Our parents – all out of state – came through sometimes to help out; those visits were infrequent gifts. Our closest friends are more than an hour away, which during this time felt vast. We had a few pillars of support in our community, but not enough; the village we needed only existed in fragments. The rest was on us, and mostly, on him.

In some ways, I think he may have felt lonelier than I did – I was getting a lot of love, but it was when the occasional person checked in on him directly that I think he felt seen. As I told him, “You don’t know what it feels like to have cancer, but I don’t know what it feels like to be the one who doesn’t have cancer.”

To state what is obvious to some but invisible to others: as a culture and society, we’re not really set up to support sick people and their families – we’re not even socialized to know how to support ourselves. We are not, to our detriment, a care-centered culture, even for those of us with relatively cushy jobs, surrounded by love. We’re all too slammed, everything is too urgent, and we put money before people at every turn. If we collectively centered (and codified) care, my husband and I might have taken off work knowing that we were valued even in our absence, we could have brought home our full salaries even if we couldn’t do our full jobs, and there would be clearer mechanisms in our community for getting the support we needed.

While I have hope that such a culture shift is possible, it remains an elusive, hypothetical future – and we survived just the same.

IV.

Once I completed radiation, my treatment trajectory got really interesting. After my surgery, my doctor took a long time to make up her mind about my next phase of treatment. The surgery pathology would determine whether I would continue with the same immunotherapy (the infusions I was receiving along with chemo, and that were to continue long past when chemo ended). There was a 70% likelihood that my cancer would not have a “complete response” to the chemo, in which case they would change the infusion medication and extend the immunotherapy timeline. I had steeled myself for this; it looked like I might get infusions every three weeks through my next birthday, in January 2025 (keeping the godforsaken port in my body all year). 

Then my doctor informed me that my surgery pathology was stumping her, as it was inconsistent with the type of cancer I supposedly had. She had retested the tumor from the surgery and the original biopsy, sent the biopsy to the Mayo Clinic, and asked 100+ of her colleagues for their feedback on the results; my pesky little peach pit was becoming a case study. When she sat me down and told me that she had gotten to the bottom of it, she had a serious look on her face. As will probably happen every time a doctor looks at me like that for the rest of my life, my heart nearly stopped. What was wrong?

I guess that was just her face, because the news was positive. Very positive. Or rather, negative – in that the Mayo Clinic turned around a result of HER2-negative from my original biopsy. 

Lost? I was too. I had to repeat this back to her in layperson terms to make sure I got it: the HER2-positive aspect of my cancer was why I got chemo and was getting immunotherapy. The retesting uncovered that the tumor was heterogeneous – a mix of positive and negative – which happens, but they had designed my treatment plan around the presumption that it was pervasively HER2+. Now, it looked like the first biopsy had just hit a small pocket of HER2+ cells – but that wasn’t the real story, it was more of a fluke. 

Turns out, my cancer wasn’t the scariest kind after all.

(Now, if you’re wondering the same thing I did, like whether I even needed chemo if it was mostly HER2-, I’ve asked that and received evasive answers; no doctor or hospital will ever concede this, insisting that there may have been some benefit. I’ve slowly made peace with it. It’s behind me, and while I love Quantum Leap as much as the next Gen-Xer, I can’t time travel.)

So, what did that mean for the rest of my treatment? A different kind of infusion then? What was next? 

When she told me that – given this news – they were discontinuing infusions, the relief was a waterfall. My whole body took its first breath of fresh air in months. And on the morning after my last day of work a couple of weeks later, I lay there on the operating table, getting the port removed from my chest, silently weeping and alarming the surgeon who thought the anesthesia wasn’t working. I assured her, “It’s a good cry!” In one day, I was released from both intensive cancer treatments and the nonprofit industrial complex, and the future cracked open, unraveling itself at my feet.

V.

While the worst was suddenly behind me, I was far from done. I won’t be for a long time. We moved directly into hormone therapy, which I will be doing for years in order to suppress the estrogen in my body that my kind of cancer feeds on. I have a lot to say about this, but am saving that for another post.

I spent much of this cancer journey in a state of cognitive dissonance: grateful that I caught it but pissed that I’m the one in eight. I’m still angry that cancer robbed me of a healthy year of my life and set in motion a domino effect of further challenges – but in the absence of those challenges, I know I wouldn’t be anywhere close to the shape I’m in now. While I’ve always been health-conscious, I’d never built strong habits and had my vices. Now, I don’t have the luxury of not focusing on my health, and as a cancer survivor with postmenopausal estrogen levels in my mid-40s I’ve become highly disciplined: I’ve cut back on alcohol by about 80%, I exercise five days a week with a lot of strength training, I’m tracking my sleep and going to bed earlier, I’m eating more protein and less sugar, and I’m taking my vitamins like a good girl. I feel better than I have in a long time, even before my diagnosis. 

This is my way of taking my power back. I’m the kind of person who, if a wall drops in front of me, I might shake my fist at the sky for a minute – and then I’d look for the best way to scale it. I didn’t think I’d be swimming upstream for the second half of my life, but it does build some killer muscle. Some would say that’s resilience. My family would probably say it’s bullheadedness. Teimosa, my Brazilian-Portuguese husband calls me. Stubborn.

While I’m not religious, I do believe in the cosmic energy of the universe, and I think the stars aligned to give me time to come back to my whole self after deprioritizing her for so long. Even now, two years post-diagnosis, I think I’m still in a cancer comedown period. I remember after my wedding, I felt melancholic for a little while, an emotional counterbalancing after so much elation; this is the opposite of that, like being lifted onto a parade float after being kicked to the curb. It may not be sustainable, but I’m due for some light after a period in the dark. (American politics did not get this memo, but that too is another post.)

These writings are meant to be more than a retelling, or a reference for the newly diagnosed; they are an invitation, with breadcrumbs of learnings for you, my friend. It took getting cancer for me to understand so much more about my health as a woman in midlife, and so intimately about how the systems I’m surrounded by and dependent on aren’t programmed to support me. I’m actually building a new career around the experience, in a way, and will talk more about that when the time is right. 

For now, I wish you this: that it doesn’t take a life-threatening illness, or some other crisis, to stir you awake in the areas of your own life where you’ve been asleep. My cancer may have been too boring for a novel, but I didn’t need to almost die to learn how to live.

I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?

- Mary Oliver

DISCLAIMER: I’m not a doctor, I’m a patient. I’m telling this story through the eyes of a laywoman, not an expert. Don’t take anything I say for absolute medical truth; I didn’t cite all my sources so please double check all stated facts.