cancerversaries

 I've been meaning to write about the experience of hitting my first set of cancerversaries since I started feeling them looming ahead of me, but it's also been such a strange and complex experience I don't even really know how to begin.* Last summer (2024) was a flurry of cancer-related milestones... there was the one-year anniversaries of the whirlwind experience of finding my lump, discovering it was cancer, and starting treatment, all punctuated by also finishing my full year of Herceptin infusions, and, two days later, getting my port removed. 

I knew hitting those milestones would feel significant, but they were an even more profound experience than I'd anticipated. I think the most surprising part was just how significant it felt to have my port removed. 

I've been deeply grateful for my port throughout treatment. It was weird and a little annoying, and never stopped feeling a bit tender, but it was SO MUCH BETTER than an IV for getting my infusions. I sang its praises to anyone who was debating between a port vs IV for chemo. 

It was only as I got close to finishing my infusions, and knowing I could get it removed soon, that I think I let myself acknowledge the fact that I absolutely hated having it. I knew it was necessary and important to have for treatment, so feeling negative towards it didn't really make sense (well, yeah, ok it totally made sense, but wasn't a helpful thing to think about). 

My last Herceptin infusion was Monday, July 29th. I was able to schedule the port removal for two days later, which was also the day right before the anniversary of starting chemo (Aug 1). 

Getting the port taken out completely transformed how I felt about facing that chemo anniversary. It was like I'd been holding my breath for a year, and could finally let it out. The procedure itself was super quick, and had such a unique feel given that the doctor, nurses, everyone involved was so elated about it. I realized it's probably one of the few procedures where patients are 100% happy about getting it done, and how fun that must be as a medical professional to be a part of. 

Afterwards, I sat in my car crying/laughing like a maniac. It took a while to stop. The relief I felt was... indescribable. I was positively giddy. Even though the incision was still sore from the removal, I immediately removed the little pillow from my car seatbelt. I was just so ready to be done. 

Before then, I'd been looking at that Aug 1st anniversary with some dread and apprehension. With my port removed, it was like this massive weight was lifted, and that date felt more like a true celebration than a reminder of something awful. I was blown away by the difference. 

A constant refrain since last summer has been "what a difference a year makes." That phrase has echoed in my head probably a million times. How strange and wondrous to look back 365 days and be in such a different phase of life (I wrote about this some on my birthday post). 

One of the strangest aspects of time passing is realizing when it was no longer correct to say "I got cancer last year." Having to stop and think about how much time has passed (it not being such a close, constant beast in my rearview mirror) is bizarre and wonderful. I now need to attach a year to my diagnosis date. 

These dates will follow me every year. I don't know what it will feel like to revisit them each time. It's been a fascinating exercise, seeing what catches me by surprise-- what feels significant in a way I hadn't expected, what actually passes almost without notice that I'd expected to be emotional. I imagine that all fades and eases each year. But is also an inescapable fact. 

The strangest part, to be honest, is knowing the statistic that 1 in 8 women will get breast cancer, most of them at older ages than I am now. Which means, some number of women I know are likely to face this diagnosis and go through at least some of what I did. (Some number of women I've known have gone through this and I may never have known of it) I hope I'm able to provide whatever guidance, support, reassurance, "hey look there's life after cancer" reminders, etc, whenever that is the case. 

*I wrote much of this back in September, but am just now actually publishing it

44

 I turned 44 a couple weeks ago. 

I threw myself a party, we had pizza and sushi. I invited several friends and neighbors, both people who are already near and dear to my heart along with people I don't know well yet but want to. I went through my usual cycles of excitement at planning a party, a bit of anxiety about whether anyone would actually show up, the mild panic of prepping and trying to make sure everything was ready, wondering why my introverted ass decided to host a party, but ending with the warm tenderness of being surrounded by people who came to see me, to celebrate me, who care about me and wish me well, my heart brimming with gratitude at their warm hugs and the looks in their eyes as they told me how happy they are to see me looking so good. 

It was a particularly significant birthday, given that the differences between this year and last year. Last year, I spent the day after my birthday sitting in the infusion chair, getting my 3rd dose of life-saving poisons. This year, I spent the day after my birthday hosting a party and then going out dancing for the 4th night that week. It's a little hard to wrap my brain around, still. But I'm just so deeply grateful to be on this side of things. 

moving on? (update, 6 months after finishing chemo)

[I wrote this sometime in May but then forgot about it, finally posting it now]

Life after cancer continues to be a strange place to be, but I'm in a much better place than I was a couple months ago. My energy levels feel much more like that of normal people's. This feels like an odd thing to say, but it feels pretty fantastic to feel tired because of something I did, and where I can rest and I feel better afterwards, as opposed to chemo- or autoimmune-induced fatigue where you're just exhausted for no good reason and have zero control over making it any better. 

Over the past few months I've traveled to Austin and Portland (and have a trip to Maui scheduled in a few weeks!); I've gone to a few concerts, including on my own, and started going fusion and west coast swing dancing with Zach; I joined a gym and have been working out fairly regularly, including starting strength training. 

I have moments where I stop and marvel at the things I'm doing (out at a show, going on a hike with the dog, etc) and feel a wave of complicated emotions wash over me-- gratitude, amazement, grief, etc. There's still the occasional stab of terror at the thought of dealing with cancer again, of course. I feel keenly aware that nothing is guaranteed, which is part of what makes me feel extra appreciation for everything and has me embracing this "fuck yeah, carpe diem" attitude. I also feel some amount of survivor's guilt, including guilt at how I appear to (so far) be tolerating Tamoxifen better than a lot of people do... that's a strange little beast, right there. 

Kitty update: unfortunately things with Maya did not work out in our household. She and Nev never figured out how to get along, and it wasn't a good situation for either of them. Maya has now gone on to a new home where she's the sole kitty and is beloved and already seems very happy and comfortable there. All's well that ends well, I guess? It definitely brought up some complex feelings for me. For one thing there's the guilt at knowing I didn't exactly think things through rationally when I decided to get Maya, and feeling like I made a mistake that caused many of us some hardship. Then also, having her around for a few months and then having to get used to her absence, brought back grief about Sierra's passing, and just missing her a lot. 

We maybe will try again in a few months, maybe with a younger male kitten. Zach has a vision of a kitten and Cocoa Bean growing up together and being play buddies, which would be amazing, if it doesn't stress Nev out too much. We'll see. I don't want to make the same mistake and rush into anything again, so we'll take our time with this one. 

So, yeah. Overall, I'm actually doing pretty dang well. I'm happy, I'm grateful. Some things feel extra heavy. A lot of things feel pretty great. Life is weird. 

on (dis)comfort

I’ve spent a lot of time over the past 8-9 months thinking about dis/comfort. I’ve had to go through a lot of things that were decidedly uncomfortable. Some are pretty big discomforts, like mouth sores that left me eating nothing but applesauce and smoothies for a solid week, or feeling such bone crushing fatigue that getting out of bed was nearly unthinkable. And there are the more “frivolous” discomforts, like the first time I left my house with only a beanie covering my newly-bald head, feeling so self-conscious but knowing I had no choice but to swallow my vain discomfort and get on with life (or, really, no other choice felt acceptable).

 
Through chemo I wore my illness on my proverbial sleeve. Some people are able to hide the fact that they’re going through cancer treatment, by cold capping or wearing wigs, etc. I couldn’t be bothered. Also, I don’t think I could have “passed” for a normal healthy person through those months. I looked clearly unwell for most of that time, in a way that went beyond just the hair (not) on my head… puffy eyelids and face, pale skin and gray lips from anemia… It took a solid two months after the end of chemo before I looked in the mirror and recognized the face looking back as my own (or my “normal” face, the face of someone who wasn’t actively sick and fighting against cancer and poison/medicine).

 
But even if I could have hidden my disease away, I don’t know that I would have wanted to. And this gets into the other aspect I’ve spent a lot of time thinking about… whose comfort do I want to prioritize? Yes, I felt self-conscious existing as someone who was obviously a cancer patient, feeling like a walking reminder of this ugly disease that is at best an unpleasant thing to think about and at worst a possible trigger to others who’ve been touched steamrolled by it. I grappled with that feeling a lot.

 
But I also realized that it felt important to remind myself that I had a right to exist in the world as I was, with what I was going through, without having to apologize for it or hide. I was putting my own comfort, the tiny bit I could get during a time when so much was uncomfortable, above other people’s potential discomfort at seeing A Sick Person. I’ve also often been an advocate for making the invisible visible and documenting all the different phases of life (not just the happy stuff), and in some ways it felt like an important act to not hide what I was going through and even post the occasional selfies with my bloated, pale, hairless face as a record of my experience (and almost as an act of defiance against cancer itself).

 

I am now navigating the world with hair that looks like I could have chosen to get cut this way, instead of being so clearly post-chemo growth, and a single breast. I’ve had some complicated feelings about being flat on one side, but I'll save going into that for another post. For now, I will say this: I thought I’d already learned some big lessons in body acceptance and body positivity before all this, but cancer really gave me a much more intensive crash course on the topic. And one of the things that it really drove home for me are that for any body-related insecurity I had two options: 

 1) to feel self-conscious, constantly worried about what other people thought of what I looked like, 

or 

 2) to say “fuck it” and embrace my right to exist in the world exactly as I am in any given moment. That other people’s discomfort (real or imagined) is not my responsibility. That I (and everyone else) get to unapologetically exist as I am, without shame.

moving on?

 I don't really know how to think about this current stage of cancer treatment. The really intense phases of active treatment-- chemo and surgery-- are done. As far as we can tell, the cancer is gone. Yet I'm still taking meds to treat it/prevent it coming back, and will be for years. It's not quite active treatment, or not the way chemo was, but maybe...passive treatment? It's still...something. It's a weird time (then again, everything about cancer has been weird). 

During chemo I was getting infusions of two chemotherapy drugs (taxotere+carboplatin) and two her2 targeted drugs (herceptin + perjeta). We think my cancer is all gone, but there's always the risk of stray cancer cells floating around my body, waiting to come back (some people call this state "schroedinger's cancer"), which is why I'm still continuing with more meds. I started back up with herceptin (by itself this time) a few weeks ago, and will keep those up every 3 weeks through about July. I didn't notice any side effects from my first herceptin-only infusion, and hopefully that'll keep up. I'm not a huge fan of returning to the infusion center again, but it's at least a much shorter, easier process than full chemo was.

Last week I also started my endocrine therapy, taking Tamoxifen which blocks breast tissue from absorbing estrogen. The plan is to take it for 5 years and then we'll reassess. If I'm tolerating it well I may continue taking it for another 5 years, or there may be new data that informs our decisions at that point. I've been a little nervous about taking this drug... many people have no side effects, or mild/tolerable ones. But I've also seen stats indicating that as many as half of the people who start it, stop before finishing their 5-10 year courses because the side effects are too severe and uncomfortable. It's a bizarre experience to be taking it and waiting to see how it affects me.  

One of the stranger aspects of processing this whole "I had cancer" thing (still getting used to using that past tense), is figuring out how to even frame the story in my head. There's a part of me that tries to minimize it.... Like, yes, I had cancer, I went through chemo, it was kinda horrific, my breast was amputated, BUT I was only ever stage 1, my cancer was always highly curable. I wasn't really in danger of like, dying, right? My case was so much less severe than so many other people's. I have the luxury of putting cancer treatment behind me eventually, and objectively speaking I have good odds to not have to go through any of this again. It was just a thing, I got through it, and now I'm ok. No biggie. Right?

And then another part of my brain is like HOLY FUCK, I had FUCKING CANCER. And it could still COME BACK?!?!? What the fuck do I even DO with that information?? I don't know that I'll ever fully wrap my head around all this. 

Fun fact: depending on what studies you look at, what factors are accounted for, etc, my risk of recurrence over the next 5-20+ years seems to be somewhere between 5% and 25+%. Those numbers could certainly look a whole lot worse, but they're still far from comforting. Especially when my brain plays funny games like "well you already had the statistically unlikely thing happen, what's to stop that from happening again?" Also, whether rational or not, while I don't think cancer is going to kill me in the short term, I have much less of an expectation of living till old age. That doesn't necessarily feel scary to say, it just kinda feels like a pragmatic take? There's the risk of my cancer coming back, plus the increased risk of other things (other kinds of cancers, cardiac issues, etc) that are increased somewhat by the meds I'm taking to keep the breast cancer away. 

Anyway. So, yeah. It's a weird time. Sometimes I feel close to back to "normal," and other times I very much do not. I feel so much better than I did a few months ago, but I'm also still tired and in some sort of pain/discomfort a lot of the time (my joints feel like they aged 30 years all of a sudden). There are still weird chemo side effects that are lingering, months afterwards. I'm trying to be patient with myself about it all, knowing that this sort of healing takes a long time and is often non-linear.