My Boring Cancer, Part 4: HOT GIRL DECADE.
One of the most fascinating things I’ve learned during this time is that everyone is born with cancer cells inside them. In Dr. Susan Love’s Breast Book, which is like a breast cancer bible with a new 2023 edition, she explains that dormant cancer cells don’t kick up a fuss, but it’s when something triggers them that they get nasty and start turning on us (illustrated by Dr. Love – may she rest in peace – a little problematically with metaphors of terrorists and neighborhood crime, though it reminds me more of parenting a toddler). It’s what activates each person’s cancer cells that remains a mystery.
Something about this revelation is why I never did resonate with the warrior designation as a cancer patient; this thing was in me, it was part of me, and I didn’t want to be at war with myself. I just wanted to take out the bad parts and nicely ask any cells that are still there to please stay calm and don’t go staging any more protests. This is also why one of the beautiful outcomes of this cancer cell rebellion is that I’m taking f*cking great care of myself, trying to keep everything in there – all the parts of me – as happy as I can.
But I’m getting ahead of the story – there’s more to why I’m taking such good care of myself now that goes beyond staving off a recurrence, which brings me to my last post of this series. I can’t take credit for the title, by the way. It was born of a text conversation I had with a fellow patient as we compared treatment plans, and I asked her about the hormone therapy stage of her treatment; she replied with “That’s 5-10 years so I don’t think of it as treatment, just my HOT GIRL DECADE.” Yes please.
Just a warning: this post gets into some medical weeds. I will try to keep it clear and intelligible but this is your heads up that I’ll be throwing out some technical mumbo jumbo, all in service of truth-telling and knowledge sharing.
4.1
As I mentioned in my last post, I wrapped my work project last June, and shortly thereafter left my job. That’s when my treatment trajectory also got really interesting. What I alluded to but stopped short of mentioning last time was that once my surgery happened, my doctor took a long time to make up her mind about my next phase of treatment. You may remember that the surgery pathology was to determine if I would continue on the same course of immunotherapy (the infusions I was receiving along with chemo but that were planned to continue long past when chemo ended). I was told there was a 70% likelihood that my cancer would not have a “complete response” to the chemo, and if this was the case, they were going to need to augment my immunotherapy – meaning they would change the medication to something a bit stronger and extend the timeline. I had mentally prepared myself for this; it looked like I might very well be getting infusions every three weeks through my next birthday, in January 2025, keeping the godforsaken port in my body all year.
Then I learned that my very experienced, well-respected doctor was confused by my surgery pathology results, which were inconsistent with the type of cancer I supposedly had. She had gone back to the tumor from the surgery as well as the original biopsy, retested both, and ended up sending the biopsy to the Mayo Clinic and asking 100+ of her colleagues for their feedback on my case. Apparently my pesky little peach pit was becoming a case study. As she told me several times during this period, “You are…unique.” As much as I normally take this as a compliment, this was one kind of unique I wasn’t sure I wanted to be.
When she sat me down in late June and told me that she had gotten to the bottom of it, she had a serious look on her face. And as will probably happen every time a doctor looks at me like that for the rest of my life, my heart started pounding. What was wrong?
I guess that was just her doctor 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.
To help you connect these dots (I had to repeat this back to her in regular-person language to make sure I got it): the HER2-positive cancer that I was told I had is more aggressive, and was why I got chemo and was getting immunotherapy. The initial biopsy wasn’t exactly wrong, but now it seemed the tumor was heterogeneous – as in, both positive and negative – which happens, but they had designed my treatment plan around the presumption that it was pervasively HER2+. Now, it looked to be the opposite. Like the first biopsy had managed to hit a small pocket of HER2+ cells but that wasn’t the real story.
My cancer wasn’t the scariest kind, it turns out.
(Now, if you’re wondering the same thing I did, like whether I even needed chemo if it was mostly HER2-, I asked that. My doc says in some ways it helped – but I think the unspoken understanding between us was that if this result had been more accurate in my initial biopsy, they would have skipped the chemo and I would have had an all-around easier go of it. I’ve made peace with this semi-tragic fact, because 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 they were discontinuing infusions, the relief was a waterfall, like whatever the emotional flipside is of the stomach drop that I felt when I was first diagnosed. My whole body took its first breath of fresh air in months. And when I lay there on the operating table a couple of weeks later, the morning after my last day of work, to get the port removed from my chest, I started silently weeping on the table. I alarmed the surgeon who thought the anesthesia wasn’t working, and assured her, “It’s a good cry!”
Over the course of 24 hours, I was released from both intensive cancer treatments and the grind culture that had been holding me down for years, and the future all of a sudden cracked open, unraveling itself at my feet.
4.2
Of course, it’s not like I was done. I won’t be for a while. We moved directly into hormone therapy, which I had been uneasy about.
To understand the trepidation here, some context: as a curious and health-conscious woman in my 40s, I had already started investigating my imminent hormonal changes. It’s all much easier to learn about now that menopause is having its long overdue cultural moment. Thanks to persistent journalists and Insta doctor influencers, it was in the Zeitgeist. I had already had conversations with my primary care doctor about HRT (hormone replacement therapy) and whether it was something I should consider trying as perimenopause loomed.
Those conversations had only recently begun as I received my diagnosis last fall. And once I learned that my cancer was ER+ (estrogen receptor-positive), I knew that any HRT option for me was off the table, probably permanently.
If you’re thinking, “I thought HRT was bad,” the quick recap is that the 90’s study that made all the doctors panic about HRT (which used to be regularly used to treat menopause symptoms) has since been dissected, and the nuances are being revealed with much more detailed explanations about its risks and benefits. The current thinking that experts and medical companies (who, let’s be clear, stand to profit) are blasting far and wide is: yes, HRT can be dangerous if you do it too late in your menopause journey, but it can be hugely protective if you do it earlier, like starting in perimenopause. That’s if it’s not contraindicated for you.
In 2023, I’d drunk the Kool-Aid and was feeling fortunate that my generation gets to reap the benefits of this big reshifting in the status quo of menopause relief. What’s becoming clearer as research around menopause gets more robust is that estrogen is kind of important. Like, very important. And the natural drop in estrogen that happens in menopause can wreak all kinds of havoc on women’s bodies and minds that we’re just beginning to understand, and it goes way beyond hot flashes. (If you read The New Menopause, which I recommend with a grain of salt, the last quarter of the book is a full glossary of menopause symptoms.) It’s why they say women live longer, but not better. For someone who has a family history like mine, heavy on the Alzheimer’s and heart disease, the great hope of HRT is the possible safeguarding effects it can have for our brain and cardiac health, among other potential benefits. It’s supposedly the most effective way currently available for women to live longer and better, or so says the “menoposse” (I did not make this up) of doctors with the biggest megaphones.
Some women, that is. Meaning, for the women who can afford it and for whom it is safe.
For those of us with ER+ breast cancer, the hormone therapy phase of our treatment is all about suppressing our estrogen. This is more complicated for us pre-menopausal folks, because our cancer is fond of our estrogen, which is still at higher levels and hasn’t naturally dropped. To reduce our chances of recurrence, our oncologists try to squelch the estrogen as much as they can, and that means receiving some combo of ovarian suppression shots and pills that block it (aromatase inhibitors), both of which I currently receive. So not only is our supply of estrogen getting cut off practically overnight, it’s happening earlier in our lives than it naturally would have.
Do you see where I’m going with this?
Just as all this research is being broadcast everywhere about how detrimental a drop in estrogen can be to many aspects of my health, I have begun medication to block all estrogen from my body. To boot, I’m not eligible for the most popular current options for relief that are available to other women. And this goes well beyond me: around 4 million women just in the U.S. are breast cancer survivors, about half those women were under the age of 62 at diagnosis, and about 80% of those cases are ER+ breast cancer. That’s well over a million women, and doesn’t include all the other women who are contraindicated for other reasons. As I continue to follow all these doctor influencers who might as well have HRT tattooed on their foreheads, what used to be a feeling of hope for my future health has slowly turned to panic, and I’m not alone. I see the comments on these posts about HRT and many of them are from women like me, triggered by all the attention on it when it’s a nonstarter for us.
So I started to ask anyone on my care team who would listen: Am I going to be causing more health problems for myself tomorrow by treating the one I have today?
4.3
The answer is no, and neither is anyone else in my boat, necessarily. This is a controversial medical moment for menopause, just as I have been unceremoniously shoved into it, so these are questions worth asking – but I’m reminding myself not to get caught up in the torrent of information and focus on what feels right for me.
What’s become achingly clear by this point in my journey is that even my high quality, well meaning specialists are only driving in their own lane. I can’t blame them – everyone can’t be a generalist – but what is the impact of that hyperfocus on my wholeness as a human?
I felt this acutely as I made my way through treatment, that specialists even working together on one patient’s case have their own way of speaking and communicating information to that patient, at times seemingly at odds with each other. The radiologists would tell me one thing that I would celebrate, and my oncologist would then read the same scans differently and pop my balloon. My surgeon was explicit about it; when I asked her at the beginning when I would be considered “cancer-free” her response was something like, “Well, I’m a surgeon, so as far as my job is concerned you’re cancer free when I remove it from your body.” As in, the clarity around some very key points in this process changes depending on the specialist you ask. The same thing goes for all the experts on their menopause soapboxes. The common truths for our health remain nebulous.
Here’s the thing: when my cancer doctor’s sole focus is the cancer, all the health repercussions from the most effective cancer treatment are of secondary importance. But I was never given the opportunity to make an informed decision about what is of primary importance to me. I’m doing what I’m told for now, because of course I want the cancer to stay gone and want to live out my days never having to go through this again, and because the hormone therapy – while it’s affecting me in small ways – isn’t ruining my life. So far.
But this experience has me on a mission to fully understand all the possible impacts of this treatment on my health, even the ones I can’t see or feel.
4.4
The prevention and mitigation steps I’m taking to make sure I live both longer and better have risen to the level of a project, so I guess it’s lucky that I’m a bang-up project manager without a full-time job right now. Turns out self-advocacy in the long haul of a medical journey requires an intense amount of perseverance, diligence, and time.
I’ve been to a cardiologist and a neurologist, explaining to both of them that I’d like to get a baseline understanding of my current cardio and neurological health so we can keep tabs on my progress, and make sure I’m not deteriorating in either of these areas as long as I receive endocrine treatment, which could be up to a decade. (They both found it intriguing that I was there with no current issues to report. Is it that rare for patients to be proactive about their health? Apparently, yes.) Besides the reading and self-education, the appointments with specialists, the follow-up scans, the ongoing shots in my belly every month, and the supplemental wellness treatments like lymphatic drainage massages and acupuncture to get past lingering chemo issues and keep the hormonal effects from going haywire – besides all that, all I can do is keep myself in tip-top shape.
Because I’ve asked multiple doctors the million-dollar question, including my oncologist and GP: In the absence of HRT for women like me, is it true that the only other real option for combating the negative effects of menopause and plunging estrogen is to just take really, really good care of ourselves…?
Yes. In no uncertain terms, yes it is.
So, this brings me back to my Hot Girl Decade. Remember when I said in a former post that much of this cancer journey has been spent in a suspended state of cognitive dissonance? Grateful that I caught it but pissed that I have it? I think that’s an evolving but semi-permanent state. Cancer not only robbed me of a healthy year of my life but 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. If my only option to stay as healthy as I can is to just stay as healthy as I can, then that’s what I’ll do. While I’d always been health-conscious, I’d never been super disciplined and I had my vices. Now I don’t have the luxury of not focusing on my health, and my practices as a cancer survivor with postmenopausal estrogen levels are different than they would have been a year ago: 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 leading up to my diagnosis, but also: this is all just my way of taking my power back.
4.5
I’m the kind of person who, if you drop a wall in front of me – I might flip you off or shake my fist at the sky for a minute – and then I’d be looking for the best way to scale it. Up until this point in my life, I didn’t think I’d be swimming upstream for the second half of it, but swimming upstream also builds some killer muscle. Some would say that’s resilience, I suppose. 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 which gifted me the time I needed to come back to my whole self after deprioritizing her for so long. I think I’m in what you might call a cancer comedown period, and we patients all experience that differently. 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 counterbalancing of the darkness with a year of light.
These writings are meant to be more than a retelling; they are an invitation. There are breadcrumbs of learnings for you, my friend, throughout this series of posts, which is why I was compelled to write them. It took getting cancer for me to understand so much more about my health as a woman, and so intimately about how the systems I’m surrounded by and dependent on aren’t truly programmed to support me. If you’ve taken the time to read this far, thank you, and I wish for 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.
In some ways I’m still gathering my own learnings from all of this and will be for years, which explains why I’m not sure where to leave you – there is no definitive conclusion, just a story, and one of many. So I turn to someone else’s words for the wisdom we’re all looking for, an excerpt from the poet sage, Mary Oliver:
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?
If you are a new patient, or fellow survivor, or know someone who is either and needs support, please feel free to reach out.
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 don’t always cite my sources so please double check all stated facts.
