My Boring Cancer, Part 3: Five hard takeaways from 8 months of treatment.
Dear Gentle Reader (Bridgerton fans, you can imagine this in Lady Whistledown’s voice if it’s more fun for you), if you’ve been reading this series the way it was meant to be read, you know the background story of my diagnosis, what it was like to digest the cancer news, and what I was told would be my treatment plan. For this installment, demystifying what it’s like to be treated for breast cancer today feels important (my head was full of misassumptions based on outdated pop culture references), but this exercise is also a public expression of my personal need to process the past year.
So I thought about what would be most helpful to you, and also most helpful to me, which is likely not a condensed retelling of the full ordeal. As much as it all felt like a slog, I would rather it not read like one.
But everyone loves a good listicle, right? We’re all fans of a bullet point, yeah?
Hope so.
Because I give you: my cancer treatment story, in two lists. Each list contains five points. List #1 summarizes the treatment in its five phases, as concisely as I can. For those of you who know all that stuff or aren’t particularly curious about it, skip ahead to List #2, which is more personal and covers my five takeaways from the full experience.
List #1: The Plan Itself (at least originally, and in chronological order, for full context)
Chemotherapy, once every 3 weeks, November 2023-March 2024. This can vary from once every two weeks, to once a week, etc etc, and you can have multiple rounds of different kinds – I did ONE round of docetaxel, and each session is a cycle, so one round, six cycles. This can occur after surgery for some people, but my oncologist wanted to see how well the chemo worked on my tumor before removing it, so chemo came first. With the below infusions and all the prep, my visits were usually about 4-5 hours long, the treatments only being about 2 hours of that time.
Immunotherapy, infusions along with chemo at first, but planned to continue well past chemo until at least the following November (12 months total) every 3 weeks. The big caveat here: this plan would get augmented and extended depending on the pathology from my surgery (see below), meaning when they understood more about the kind of response I had to chemo and what my cancer was really like, they were likely to change this plan. This immunotherapy was targeted specifically to HER2+ cancer – fellow patients I know who were HER2- did not get immunotherapy. (Refer to Post 1 for more info on what the heck I’m talking about.) They wanted to wait a good four weeks after chemo for my body to be ready for surgery.
Surgery, mid-April 2024. Based on my negative genetic tests (ie. not testing positive for any number of genes associated with breast cancer) and the phase my cancer was at (ie. not having spread to the lymph nodes, which are like the doorway to other organs) I opted to get a lumpectomy rather than a mastectomy. Fun fact: mastectomies, at least in NY but perhaps nationally as well, are always optional and always covered by insurance. They did not recommend one because given the above circumstances, a mastectomy would not have changed my health outcomes. There are certain preventative reasons to get one even if you don’t “need” one, but I didn’t want to do a major surgery if it wasn’t recommended. It was also suggested to me to get another genetic test in five years, as the research evolves quickly.
Radiation, May-June 2024. This was described to me as “the easy part,” which was partially accurate in that the sessions were quick and painless. What was not easy was the one-hour-each-way driving trip I made every weekday for five weeks for about 10 minutes of treatment that I didn’t feel but involved a lot of people seeing and handling my boobs, plus the nasty rash it caused and the permanent tattoo dots all over my torso. Some people asked me if I “rang the bell” when chemo ended (I had to look this up, as I’d never heard of it) and that wasn’t a thing at my center. What WAS a thing was ringing an enormous gong after my last radiation session, which was kind of a kick.
Endocrine therapy, or hormone therapy. From last June on, for the foreseeable future. This consists of ovarian suppression shots once a month for two years, and daily aromatase inhibitor pills that block estrogen for as long as is tolerable to me. The bulk of my last post will be devoted to this, as I have much to unleash about this topic.
List #2: 5 Surprising Takeaways from My Breast Cancer Treatment
1. The hardest parts of chemo (for me) were not the ones for which I was bracing myself.
Do you know what a chemo port is? Because I didn’t, and getting one implanted was the first thing I had to do in preparation for my treatment. The port itself was probably what I hated most of the whole damn thing.
This was unexpected because my oncologist had made it seem like a cakewalk: some surgeon would wiggle her nose and blink and there I would be with a twinkly port in my chest like Cinderella in her ballgown. (If you’re as new to this as I was: they implant ports now to preserve the veins of the arm, directly accessing my arteries through a little device that looks like a mini-pacemaker, surgically inserted under the skin on the opposite side of my chest from the cancerous breast.)
A friend put it perfectly: doctors often conflate procedures that are common for them with ones that are easy on us, because while it may be routine, easy it was not. It was jarring, physically and psychologically, and while I was assured I would get used to the port, I never really did for those eight months I had it in my body. It was a slow recovery from the implantation and an icky feeling, having to accommodate this foreign object beneath my skin that stared me in the face every time I looked in the mirror. It scared my kids. 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 expected to be lethargic, nauseous, and hair-free – as in, I braced myself for all the things most of us think are chemo givens. And while I did shave my head and had days when I was drained, those parts weren’t the worst of it, and I never did have a day of chemo-induced nausea. (If you’re facing treatment and are freaked out about your hair, hit me up and I’ll give you some tips.) No, the worst parts were things like: not knowing what my reaction would be from week to week, as they were all over the map. I was prepared to feel worse and worse because chemo is cumulative, but that’s not how it went for me. After one treatment I was a mess, but after the next one I was okay, and on it went. There are effective meds for the terrible bits (that go way beyond nausea and exhaustion, but are TMI for this purpose) so there was a stretch when I had a pharmacy of drugs on my bathroom shelf, and my effects weren’t consistent; some issues I had early on went away, and I had new ones at the end. The grab bag of reactions, which sometimes felt like whack-a-mole – that was the pits.
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, which was my great fear, just… wrong. And our true self slowly comes back to us once we’re done, in changed form, and forever a little different than before.
2. Depending on certain factors, it’s possible to continue working while in chemotherapy. But it’s not necessarily a good idea.
This could probably use its own post, if I’m being honest; I’m still recovering from the choice to work consistently through my cancer treatment. I don’t regret it completely, but it was a complicated decision. My oncologist told me before I started that about 60% of her patients on this chemo found it manageable and some worked the whole time. She told me stories of teachers who went to work every day during treatment, which astounds me still. 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 I had the easiest kind of job to keep up with during treatment.
I was surrounded by caring colleagues, but I also was facing down a huge work project on which I was the lead, and the organization had interim leadership in place. Perhaps more experienced leaders might have handled my situation differently, but mine were so insistent that they could fill my post temporarily if I needed to take time off – something that at the time felt predictably supportive but in retrospect was borderline insulting; how replaceable did they think I was? I mentally dug my heels in and insisted I could do it. And I did. And it was. Really. Hard.
The truth is that taking a leave would have been a financial blow to my family as short-term disability pay is a joke (something I learned during maternity leave, and something many patients who don’t have the remote option know all too well), but that wasn’t the heart of it. What I came to realize as time passed was that I 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.
The universe was listening. After my work project ended, so did my time at that organization, which has been poetic and liberating. I’ve taken the time since then to heal and rest, the way I didn’t let myself during treatment. I’ve found my own value again, not as defined by my work but as defined by my life.
3. People are a little weird about hearing about cancer, but we should talk about it more if we want to normalize it.
Because this post is at risk of becoming that slog I’m trying to avoid, I’ll keep this one brief: I was comfortable talking about what I was going through, so I did. I didn’t go out of my way to tell everyone my news, mostly deciding by instinct who should know and who didn’t need to. But in the circles of people who knew, especially at work, I talked about it. I gave brief updates about what treatment was like, and I drew boundaries where I needed to – because normalizing it felt important. One of the most annoying things about having cancer was feeling like I was living a taboo topic; even saying “cancer” in a group conversation, or making a joke about it, made some people squirm. Many people new to cancer are understandably awkward about learning the news and hearing the updates, but that awkwardness is part of why a lot of patients don’t want to deal with talking about it, and so begets a vicious cycle. Let’s just talk about it with more ease and comfort, because when 25% of people will have cancer in their lifetime, it’s pretty fucking normal.
4. Nothing is linear, there will be wins and losses, and the waiting periods are the worst.
Okay okay, this one is cheating because I squished three into one, but the overall takeaway here is that cancer is not a flat, straight road leading you to a set destination; it’s more like a big wave you have to surf…for the length of a marathon. There are places where the wave crests and you feel euphoric and hopeful, and there are many moments of nearly falling off the board and drowning. The most successful patients stay as balanced as they can.
Now that we’ve strangled that metaphor to death, I recall what a friend told me: because it’s such an extended journey, the long treatment phase does eventually become just another thing you DO. Not to minimize it, like another post-it task or calendar block, but that is how it felt much of the time when I was in the rhythm of the long stretches. I planned work calls during the car rides to and from radiation; it was just part of my day.
It was the moments out of that rhythm, when I was waiting on news of the next phase or the latest results, that became the hardest to bear. The pauses in which I didn’t know what was coming next were when I hit my walls. More on that next time, because my case was full of surprises.
5. As much as it was lonely, it was also lonely for the people closest to me (and this is where community is crucial).
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 doing what I needed to do. It was the only time in my life when I didn’t feel guilty naming my limitations, except for maybe in pregnancy. (There were a lot of odd similarities between pregnancy and this experience, something about gestating life and fighting for your own, like two sides of the same coin.)
But isn’t it just as hard on our caregivers? My husband had to maintain his job while driving me to treatments, doctor appointments, and scans. While his workplace claimed to be supportive they also expected him to still do all his work, because he wasn’t the sick one, and he was held as accountable as though nothing else was happening in his life. (And don’t get me started on FMLA as an option; it’s just as economically flawed as short-term disability.)
When my harder days fell on weekends, he had to keep the house together and the kids occupied. Our closest family all live out of state and they came through sometimes to help out, a week at a time; those weeks were infrequent gifts. Since we moved to the hinterlands (as I call it) a few years back, our closest friends are more than an hour away, which is not too big a distance during normal times; during this time it 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.
Aside from logistics, my husband had to let me hold him at arm’s length as I moved through the physical setbacks and the dark feelings that came with them, sometimes exploding out of me all at 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.”
If I was to TLDR this entire list of takeaways, it would be this: as a culture and society, we’re not really set up to support sick people and their families – we are not even socialized to know how to support ourselves. I’m sure there is a person with disabilities or chronic illness reading this who is yelling at their screen or face-palming, as this has been a lot of people’s life experience that I am just now understanding viscerally.
Something is missing in the way we relate to each other these days. Empathy, perhaps. But care feels more right. 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 else is too urgent. If we centered care in our society, my husband and I might have taken off work knowing that we were valued even our absence; we could have brought home our full salaries even if we couldn’t do our full jobs; I might have spoken about my experience more openly with more people; my medical team might have managed my treatment phases with more attention to my emotional state; and there would be clearer mechanisms in our community for getting the support we needed.
But that wasn’t what happened. We survived just the same, and we’re finding our way back to thriving. But this got dark, didn’t it? Frankly, after working through my story I’m landing in a more jaded place than I expected to, especially considering how good I actually feel now.
Look, I don’t think there’s a pleasant and convenient way to go through cancer treatment, even if all of society’s ills are corrected and our culture gets its shit together. But there’s a better way, and with my survivor goggles on, I can now see its contours of possibility. And I gaze longingly at that future for us.
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Here’s where I leave you until next time. Coming up in my final post, Part 4: the curveball we were thrown, and what it’s like getting shoved into menopause. How’s that for a teaser?
As ever, I’m signing off with some 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, before you start treatment: create a central place for your people to get their updates. That Google doc I mentioned in my first post became a doc I shared out for anyone who wanted to read the medical particulars, and eventually (once I found out I was going to get chemo) I started a CaringBridge site to document my progress for my immediate circle of people. I chose CaringBridge because you can determine who has access to it, people can comment and show you love, and it’s free. It’s not perfect, but I posted to it every few weeks. That kind of thing allows you to answer everyone’s questions at once, rather than sending many updates, which gets tiresome. All the well-meaning folks around you want to know how you are, and for me, this meant I could nicely say, “check the site.”
If this happens to someone you know or love, and you want to help: say anything but “let me know what I can do to help.” Because we don’t have the first clue, and when we do, it’s straight-up hard to ask for most things we really need (see above post, about not being socialized this way). This goes back to my first tip – think about them doing as little work for YOU as possible. The most helpful people to me were the most proactive, who either gave us options or told us what they were going to do and gave us the chance to say “no, we don’t need that.” If you live near them and have capacity, some suggestions to offer: make them a meal, get their groceries, do their laundry, take their kids somewhere fun, water their plants or gardens, get them a gift card for the supplies they’ll need, offer to pick up their meds or run errands, take them to and from appointments, or visit them and lovingly listen to them complain. What we needed most was help keeping our life together. (Also, if you have access to their CaringBridge site or other informative place, read it before asking their status. That’s what it’s there for.)
DISCLAIMER(S): If you are a friend or loved one reading this thinking any of this is directed at you or you messed up in some way, it’s not and you didn’t. Also, 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.
