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. 

and then I randomly brought home a new cat

 So we have a new kitty, her name is Maya and she's goooorrgeeeoussssssssss. 

I've had the equivalent of baby fever but for getting a cat, for months. Fairly intensely. Part of it has been legitimately missing having a multi-cat household. It's been over two years since Sierra passed away, and then we got our dog Cocoa and he took up a lot of time/space/attention. But he's now almost 2 years old, and I've really missed the feline energy (especially since Nev tends to be more aloof these days anyway). 

(Also, I think I really wanted more cuddly animal comfort and entertainment during the hard months of chemo)

I at least knew better than to bring home a new animal while in the actual middle of chemo. So what did I do instead? I waited till I was just barely over a month past my mastectomy, and a few days after my mom (and all her assistance) had flown back home again, to bring home this little darling. What can I say, I saw her photo on a rehoming group on facebook and couldn't quite help myself. In my defense I think when you've had cancer you're maybe allowed some irrational impulse decisions. 

In my dreamy-eyed state I had very optimistic expectations for how easily she would adjust to life in her new household. She had been calm, confident, and very outgoing when I met her in her previous home, I figured she'd enjoy the novelty and more playmates here. I set up a room for her to be in separate from the rest of the house, brought her home, let her out of her carrier, and watched her promptly slink under the dresser. That much was expected. 

What I hadn't anticipated, was her proceeding to spend 95% of her entire first week hiding out under that dresser or in the closet. As the days dragged on and she continued to seem to nervous, I started to worry. She was warming up to me, but ran and hid if she even heard anyone else. Was she too stressed out in our household? Was I doing enough to help her adjust? Meanwhile, I was also adjusting to getting back into "normal" life. With my mom returning back home, I picked back up on a lot of the household tasks and responsibilities she'd shouldered during my recovery. In some ways I've been very glad to return to a more normal routine and be able to do the things. But also, it's been... a little overwhelming, and exhausting. I had read so many others talk about this aspect of cancer recovery, and was still somehow surprised by being faced with it. And I'd chosen to add on to it the complex task of helping a scared kitty adjust to a house with more people and animals than she'd been used to for her previous 4 years of living. 

I started to wonder if maybe I had rushed things and made a mistake. And yet, I felt like she kinda belonged here. The other day I walked into her room, and she immediately ran out to greet me and ask for pets. That melted my heart into a neat little puddle. She has since turned a corner, seeming much more comfortable and brave. She likes me a lot and has even curled up in my lap several times. She no longer runs and hides at the first sight or sound of any other members of my household. She's even had a few encounters with Cocoa (separated by a gate) where she kinda hisses at him but stands her ground and doesn't run off to hide (Cocoa, meanwhile, stands still, his tail wagging at 60mph, really, really wanting to play with this new friend but he knows, through his experiences with Nev, to give her some space). 

Nev seems unbothered and only mildly curious about this new inhabitant. I'm in no rush, wanting to give everyone plenty of time to get used to each other. Maya is still mostly confined to her separate room, and we'll slowly start letting her venture out more and have more interactions with Nev and Cocoa. I think she will be a sweet and fun addition to our household dynamics once she's used to everyone and everything. I'm looking forward to that. 

when a sidewalk access cover looks like something from a studio ghibli film

how I found out I had breast cancer

I vividly remember the exact moment when I started to worry about the lump I'd found in my right breast. It wasn't, oddly, the moment I first found it, a couple weeks before, while sitting on my sister's futon in Maui watching tv surrounded by her cats. (At that time I wasn't even convinced I'd really found anything worth noticing, and told myself I'd call my doctor if I still felt it in a few days or a week) 

It wasn't even when I went in for a breast exam and the nurse practitioner recommended getting imaging done. She seemed a little out of her depth and it seemed standard to get it checked out, whatever this was. 

The next day I was driving when I got a phone call. I saw the number pop up with the "healthcare" label, and I knew it must be Kaiser calling to schedule my the mammogram and ultrasound, and immediately pulled off into the nearest parking lot to answer it so I could safely look at my calendar. We settled on a date and time (for about a week from then) and it was as I ended the call that suddenly the dread and anxiety dawned on me. Shit, ok. I had something worrisome enough to get imaging done. And, I was either getting better at finding the lump, or it was getting bigger (or both), because it felt more noticeable each time I checked to see if it was still there. 

(I drive by this parking lot all the time, and think of this moment every time I pass by it)

I hadn't mentioned the lump to anybody yet. I didn't want to tell anyone, because that would mean it was Something To Tell. Plus, I didn't want to worry people in the very likely event it turned out to be nothing. 

But... I also realized I kinda needed to tell someone. 

Now, something I'm learning about the ways my emotions sometimes work is that, for better or worse, I can do a decent job of just kinda putting my worries/fear/anxiety/etc into a box and setting it aside when I need to. I don't know that this is healthy (particularly when I don't realize I'm doing it)... however it certainly is useful, especially when I have people I'm taking care of, for whom I need to stay calm and collected. During that week or so between the scheduling call and imaging appointment, I still felt relatively calm, at least on the surface... but I could feel this tension and worry below the surface, not really prepared to deal with it but knowing I would need to eventually. And I think I realized I needed at least someone to provide some support, to not be alone with this feeling. 

I had plans to visit a couple of dear friends, and as soon as I made the decision to tell them about this, I could feel the damn beginning to burst. I managed to hold it together just long enough to get out the words, "So a couple weeks ago I found a lump..." and then promptly I burst into tears. Bless their souls, they held me and let me talk and cry and get it all out and were the exact kind of support I needed right then. They did a lot of that over the coming months, and I'm eternally grateful for that space and support. 

Confession: at this point I wasn't even really thinking about the C-word (at least not consciously...see above about putting my fears in a box to not deal with them). Sure, I knew that was a possibility, but I also knew that the vast majority of lumps that get imaged and even biopsied are benign, and it seemed really, really unlikely and not worth (consciously) considering. What I kept thinking about instead was the desmoid tumor I dealt with a little over 10 years ago. That wasn't technically cancer, but it was an aggressive growth so needed to be cut out, and ensuring good margins meant cutting out a decent chunk of my ab muscles leaving a noticeable concave spot. So I kept thinking about that happening to my boob, which wasn't terribly ample to begin with, and having a big scar, and just feeling scared and overwhelmed about possibly needing surgery and recovery, and of my breast being deformed as a result. 

Is it weird that I was worried about vanity instead of, like, properly fearing for my life? Was that my brain protecting me, not letting me go go there and face the actual scary shit? I don't know. But that's where I was at.  

When I went in for my mammogram, they had these like one room dressing room stalls where they had me change into the cloth gown, and had me wait inbetween things. I did my mammogram, which was normal enough (as far as I could tell, it was my second ever), then I went into the room to wait a bit. Then they took me to a small dark room to do the ultrasound. 

They checked the spot with the lump, and then they spent a lot of time looking at something in my armpit which confused me because that's not where my lump was, but I didn't ask about it. Eventually a doctor came in and said that they wanted to do a biopsy of the lump, and of one of my lymph nodes. I asked if I needed to make an appointment for the biopsy, and she said, "No, we're going to do it now, today." 

I still didn't know to be scared. I thought that was maybe standard practice. 

I went back into the little waiting/changing room and sat there for a long time, I don't know how long it really was but probably close to an hour, maybe more, just sitting there in my gown, mindlessly browsing on my phone, while they scrambled to find someone who could perform a biopsy on me because it was, apparently to them (but unbeknown to me), that urgent. They did keep coming back to check on me and reassure me that the biopsy was "just to be safe."  I believed them. 

Finally they led me to yet another room and had me lie down, and injected me with the numbing shots which hurt like hell for about 30 seconds and then blessedly didn't feel like anything at all after that. The same nurse had been with me for all the things that morning and she was very sweet. The doctor explained what he was doing and why and went through all the things, and at the end he asked if I had any questions. I almost said no, but then I built up the courage to ask the question I'd been refusing to freak out about... "So, is it common to take a sample from the lymph node, as well? Is this a bad sign?" 

The doctor paused and looked at me and said, "It's not uncommon, but I'm going to be straight with you. The lump and your node both look pretty suspicious. I think you should be prepared for it not to be good news." 

Well, fuck. 

The very sweet nurse handed me a tissue. 

I thanked him for his honesty. I appreciated it, really. I'd rather just know the hard thing and move on to figuring out how to deal with it. He put some steri-strips on the biopsy sites (which ended up bleeding through and onto my bra, lovely), I dried my eyes, thanked them for everything, got dressed, and made it back to my car before I sobbed, finally opening up to the reality that I Might Have Cancer. 

I think it was after that that I went home and started googling everything I could find about breast cancer (which is usually not advised, but honestly information calms me so it mostly helped...? I also wanted to know what they were talking about when they called with biopsy results). I also finally told Zach. Before that point, I'd wanted to keep this worry separate from my normal daily bubble as much as I could. But suddenly, the probabilities were different than what I'd believed that morning, and if this biopsy came back positive he and I had a lot to prepare for and deal with. 

Here's a funny thing about the story, and part of why I appreciated the biopsy doctor's candor. After that biopsy I was about 80% convinced I had cancer, and that it was in my lymph nodes, which isn't awful but makes for a trickier prognosis. So when I got the call a couple days later confirming that yes, I had cancer, BUT!!! my lymph node was clear, it honest to god felt like a relief. The worst was confirmed, except it was slightly better news than I'd been expecting. Expectations make such a difference sometimes. 

I first felt the lump sometime in late-ish June. The imaging and biopsy happened on July 10. I got the call just two days later, July 12.  I met with my surgeon and oncologist just over a week after that, to talk about tests and results and chemo and surgery and what decisions we would make when. I had an MRI, another biopsy, port install, so much bloodwork, and then started chemo on Aug 1, just under three weeks from the day I got the call with my diagnosis. Looking back, it all happened at lightning speed... At the time, of course, the whole process felt like it took an eternity, waiting for each piece of new information and trying to figure out just how bad this was going to be. I'm grateful for the speed and efficiency of the whole process, and how every doctor, nurse, and tech I encountered were all kind and helpful and patient with my questions. They helped make a shitty time a bit more manageable.