My Boring Cancer, Part 1: The first worst day.
In 2014 I wrote a blog post about the incredibly difficult first half of my pregnancy with my first child. I published it several weeks after he was born; it was a helpful way to process what I’d gone through in hopes of finding peace again – but I needed to wait until I felt we were safely past the danger to be able to put it out to the world. And to the world it went, once he came out healthy, squirmy and just about perfect. It was cathartic for me to put words to that dark time, but even more significantly: over the years I’ve heard from a handful of people around the globe for whom reading that post was pivotal as they contended with the same, or very similar, issue. This medical anomaly (a potential genetic abnormality based on an incomplete – now defunct – test) was so obscure that if one was to Google it, my little post would likely appear on the first page of search results. It was a lifeline for some would-be parents, to read about other humans who went through what they were struggling with for whom it worked out. Literally, folks – there are kids that exist in the world today at least in part because their parents read that post. That is the power of telling our stories.
A decade later I find myself in a similar place to early 2014, on the safer side of a harrowing health journey, with a story that should be told more widely than I was first comfortable with – because it could save lives. That’s not hyperbole. Even if it helps just one person who stumbles on this and learns something they didn’t know before or just feels seen, it will be worth it. What’s more, it’s October – breast cancer awareness month – and we’re coming up on a year since this whole thing began. It’s time.
This story is best told in parts, though, as there’s too much to cover for one post, and that’s even while sparing you many of the grueling details. So, I will roll out the sequence of posts that comprise the full story one by one this month, starting with today’s opener.
Deep breath. Here I go.
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Part 1.
On October 30, 2023, I was diagnosed with breast cancer. It happened as you might expect: I got the dreaded call from my doctor after a biopsy, the one that starts with: “Are you somewhere you can talk?” My stomach dropped, 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 one was just another scare... to a cancer patient. For those of you who know this terminology, which I decidedly did not: I was told I had ER+ (estrogen receptor positive), HER2+ breast cancer, stage 1. They – well, I – caught it early. I remember thinking on that call: “Starting this minute, I will always either be a cancer patient, or a cancer survivor.” 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.)
It’s a profound moment when you realize that, while your health and longevity are under threat, your identity is about to undergo a permanent shift and it’s utterly out of your control. As someone who finds comfort in control (yes, I’m working on it), this was a highly uncomfortable moment. I had just been drafted into a club to which no one ever wants to belong; a reluctant lifetime membership.
This is not a cancer story for a book. This is not a miraculous recovery from Stage 4 pancreatic cancer, the reversal of a terrifying prognosis, and the blossoming of a new lease on life (well, the last part, maybe a little). I’ve been gifted those books, and I haven’t read them yet. Because while I’m sure they’re inspirational and I will relate to them on some level, this diagnosis felt both gutting and banal at the same time. Take the above opening sentences: when I got to the part where it said “stage 1” did you kind of 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 ever was dealt this blow: was this going to kill me?
While decades ago this diagnosis could be lethal and often was, it is 2024, and it was put to me from that first call that this was something I was almost certain to survive (note: 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 could 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 might be 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, whether the treatment would ultimately take years off my life, and how much it would impact my family, especially my kids, and even my career. 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 – both of whom feel things very deeply – were only now starting to emotionally stabilize after a few years of a global pandemic that hit just as they were starting their school years, 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.
Once I got the first bit of info in my initial call – furiously scribbling notes while tears ran down my cheeks – that the lump they had biopsied was cancerous, I had to wait a few more days to find out more about my complete pathology and thus, my treatment plan. Of course, the big question at this stage was: chemo, or no chemo? My doctor explained that the estrogen-receptor positive (ER+) 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 ER+ 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 result we had to wait on. That news, meaning whether my cancer was HER2-positive or HER2-negative, would be the thing that determined whether I was going to need chemo. In short, and in deceptively simplistic terms: the positive kind is more aggressive, so is typically met with more aggressive treatment. [I was actually triple-positive, meaning positive for progesterone receptors too (PR+), but my doctor treated that last part as negligible for my treatment plan. I have so much more to say on this hormone business, and the HER2+ finding will turn out to be more fluid – all to be covered in a later post.]
Of everything facing me at that moment, chemo was what scared me the most. Images of actresses in movies I’d seen, withering and pale in those terrible head scarves that screamed illness and death, swirled around my head. But I did my best to put that all out of my head as my family donned vampire costumes for Halloween (usually my favorite holiday) the next day, and went trick or treating. There was something almost liberating about pretending to be an immortal creature for the night, as I quietly confronted my own mortality.
Miraculously we were all able to enjoy the holiday even though we’d told our kids – then 9 and 7 – the night before. Some parents understandably wait a while, but I instinctively wanted them to know right away. I didn’t want them sensing something was wrong with me and worrying or thinking it was about them; I knew I wouldn’t be able to feign normalcy. So after I had a good sob and got myself together, we started shamelessly Googling articles and videos about how to tell your kids you have cancer. To be real: part of why I felt we should was because we could mostly assure them I would eventually be okay, and that this was a hurdle – a big one – that we would get past together. That reassurance was everything. I would have been much less certain if the prognosis was hazier.
That first night was the only time they ever cried about it, that I’ve seen. Somehow I was able to tell them without breaking down. I tried to stay grounded, projecting more strength than fear; you’ll have to ask them if I succeeded. The shock of the “mom has cancer” news hit hard at first, and we let them sit in sadness with us at first. A collective, solemn moment in which we all realized in our own way that our family life was about to transform somehow. But 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. It’s not that they didn’t care after that – but like with the pandemic, they began tucking away their incoherent feelings and scariest memories in order to just get on with life; who knows where they stored them. Somewhere in their subconscious, surely, from which they will emerge later in need of therapy, but for now still come out in reactionary microbursts and random meltdowns.
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. I realized later that they strategically withheld quite a bit about the full plan from me in that first appointment, just to get me over the mountain that was chemotherapy.
Every person with cancer has a customized treatment plan, with different treatments happening in a specific order and rhythm, and this was the one they determined for me, to the extent they told me about it initially: I would do one round of chemo, six cycles (or sessions) every three weeks from November to March, then surgery, then radiation. Because I was HER2+ I would also get concurrent, and longer term immunotherapy (additional infusions) for the better part of a year, and because I was estrogen+ I would get endocrine therapy after all that “hard stuff” was over, and that part was a years-long process. The type of surgery I would get was dependent on my genetic results from the biopsy: if I was positive for any number of genes related to breast cancer, they would recommend a mastectomy rather than the much easier lumpectomy.
As for the immediate treatment, I was instructed to block off the next year of my life.
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Here’s where I leave you until next time. Coming up in Part 2, the first major PSA of this series: more on the unconventional way my cancer was caught.
For this and every part I’m going to sign off with a sprinkling of relevant learnings for those who may be going through this or know someone who is, or just want to file this away in case it might be helpful someday:
If this happens to you: starting as early as possible, take notes. Doctors are so fluent in all of this language that they sometimes forget you’re probably hearing it for the first time and don’t know what anything means. Ask. Some people ask to record their doctors on their phones. If you don’t capture it in the moment somehow, you will forget half of it (and, my husband and I would often remember things we were told together differently). The information comes fast and furious, and there’s a lot of it. Many players start getting involved and it’s hard to track them. The best thing I did from Day 1 was start a monster Google doc where I stored everything: my timeline, my contacts, my diagnosis, etc. At the top of the doc I put in big bold font the reassuring doctor quotes, like “There is light at the end of this.” Those helped keep me going. Whatever your system of choice, record it or get a loved one to. You will never be sorry you did it, you will only be sorry if you don’t.
If you are the friend or family member of someone who drops this news on you: call. Nothing meant more to me in those first few weeks than the voicemails of friends whose calls I didn’t answer, letting me know I didn’t need to call them back but that they were thinking of me (and cards! Those were fun, but rare). We are in the age of texting and emojis and gifs, yeah yeah yeah. But in moments like this, if you have the person’s phone number, hit the Call button. They may not answer, so just leave a voicemail and make sure to say something along the lines of “don’t worry about calling me back.” Don’t feel bad if you’re someone who doesn’t typically do this (that’s me, I hate talking on the phone) but I will tell you that the calls matter, even if you received the news via text. It’s just one extra step that signals that you get this is a really big deal and you’ve stopped your busy life to pause on it because you care. Cancer is incredibly isolating, so feeling people around me and rooting for me was a necessity, and text just doesn’t convey that in the same way. Regardless, if you’re just better with text, hey, that’s not nothing – just let them know you don’t expect them to write back. Don’t ask them to do any work for you, even emotionally; they have just been dealt a huge blow and are focused on reorganizing their whole life around staying alive.
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’m not always going to cite my sources so please double check all stated facts before repeating them.
