This Hurts.

That probably seems obvious. Of course cancer hurts. We dread the very word. We associate this disease with death, devastation and sadness, and for good reason. But I think after experiencing a taste of it myself, the true destruction of this disease isn’t as obvious as you might think.

While I really want my blog to be a positive space where I share news and keep things lighthearted, I’ve been feeling remiss in not sharing some of the more gritty parts of this experience. When people ask me how I’m doing these days, I have almost a knee-jerk reaction to tell them I’m great and that I’m dealing with it all pretty well. I think this is part simply personality, but also the unspoken desire for people to hear positive things – to be uplifted and inspired by stories like mine. Plus, I can’t escape the notion that I’m relatively lucky in the context of cancer. I’ve got the bad stuff, but my treatment thus far has been so much less awful than what I’ve seen others go through. While meeting this made-up expectation is entirely on me, I wanted to take a minute to just be totally transparent, in hopes of portraying this whole thing honestly and in a way that might be helpful to someone else somewhere along the line.

So I’m writing this all in the name of keepin’ it real – not to be a complainer or a Negative Nancy. Needless to say, if you prefer to keep your cancer readings light, perhaps skip this entry in my little journal.

Cancer hurts in so many expected and unexpected ways. Even physically – I think upon diagnosis, I didn’t fully realize how physically excruciating all this would be. Radiation side effects (non-exhaustively detailed here) were horrifying and humiliating. That week was one of the worst of my life, and I hope to never re-live that pain or those feelings.

Chemo side effects haven’t been particularly painful for me, but they’re exhausting and so mentally taxing that I would sometimes just prefer to take on some actual pain instead. Neulasta, the shot I get to keep my white blood cells high enough to keep me healthy, is a whole different story. The drug causes extreme bone pain so severe that people commonly go to the ER because they think they’re having a heart attack. For some reason unknown to all, Claritin is supposed to help. I’ve been lucky enough to escape most of this side effect that way, but I’ve consistently gotten a different weird side effect of intense soft tissue pain that comes on very suddenly and lasts a few days. It makes every movement feel so achy, miserable and frankly, sad.

Recently, a new side effect has been completely inexplicable stomach pains that come in waves and render me completely dysfunctional. None of my doctors know exactly what’s going on with it, which makes it scary and more awful. I’ve had so many conversations that end with some variety of “well...that’s probably the cancer.” Yeahhhhhhh, cool. These pains are so intense that I have to take hardcore painkillers almost every day now, which is incredibly discouraging, and again – scary. I hate taking any pills unnecessarily, so suddenly popping a doctor-approved oxy a day is quite difficult for me mentally.

That’s the other side of this painful coin – the mental toll.

Perhaps this is something that affects me more than others, simply because I’m an anxious over-thinker, but the mental aspect of all this has been so exhausting. Between trying to keep a smile on my face and fake positivity at times when I’m really not feeling it, I feel like I’ve often lost myself in the process.

The first week I was diagnosed, before I knew what stage my cancer was, I was operating on the assumption it was stage IV; metastatic. I’d had symptoms for so long, and had been trying to get to the bottom of them for literally years. I felt like it was obvious that it would have spread by now. I visualized the tumor in my lungs, liver, brain and bones. I didn’t even just wonder if I had multiple metastases – I knew it.

I will never be able to fully convey the sadness that comes from learning you’re going to die soon. It was beyond and degree of emotion I’ve ever felt, and it really surprised me. I’ve never especially feared death. But the notion that once I died, I’d be missed for a while and grieved over temporarily, but that eventually, everyone would move on as necessary and I’d fade from memory, from conversation, from relevancy – was devastating. I spent those days imagining all the places I’d never been, the things I’d never done, the milestones I’d miss, the babies my friends and sisters would have, my parents growing old, my sweet pup having to find a new home, wondering who would do my job, how my roommates would pay my portion of the rent, what on earth they’d do with all my junk, wondering if Rowan would just move back to Australia, and guessing at how long I’d last. I would never wish these thoughts on anyone.

I was profoundly lucky that my cancer had not spread. My heart aches constantly for those who are not lucky in this regard. Those who are living with this disease indefinitely, managing symptoms and hoping for more time. It is so fucking cruel.

Staying Positive

Positivity. It’s a powerful concept, but it can be curiously hurtful as well. At times, people encouraging positivity can feel like they’re saying “if you’re positive enough, you’ll be ok!” Similarly, when people talk about “fighting hard,” I feel conflicted. I get the idea – a positive disposition is certainly helpful, but it simply doesn’t affect tumors.

Do the people whose cancer has spread and have to continue treatment for the rest of their lives just not fight hard enough? Would they get better if they prayed harder? If they stopped complaining? Of course not. People get better because of drugs and treatments and surgery. Not because of a mindset.

So while I’m a huge proponent of relentless gratitude, sometimes, I need to just wallow. I think everyone does. It can be really hard when I’m talking about my situation with someone, and they automatically resort to telling me how lucky I am. Things like “You’re so lucky you caught it!,” “you’re so lucky to have gotten into MD Anderson!”, “you’re so lucky to not be losing your hair!”, or my favorite, some version of telling me I’m lucky I’m not (necessarily) going to die. I totally understand why people react like this; I AM lucky in all these ways and so many more. But I know that, and I spend a lot of my time feeling guilty about these things, so being reminded while I’m in a very low place can be frustrating.

I think since people associate cancer with dying so readily, they assume I’m simply over the moon to not be facing imminent death. The truth is, my diagnosis is promising for now, but could change at any moment. It goes without saying that I’m intensely grateful that I’m not forced to plan for the end of my life right now, but I’m still a regular old human who pretty much plans to live through the day, and wants to be able to take for granted the simple act of living. This is a hard one for me to explain, because I know no one has anything but positive intentions, and for the most part are just happy I’m alive – but being told you’re lucky to not be dying is quite a psychological trip.

Consider this: you’re a friend of mine, and you’re telling me about a fairly bad car wreck you’d been in recently. My reaction, of course, is to tell you emphatically that I’m so glad you’re alive!

I tell you repeatedly that you’re so lucky you didn’t die, willfully ignoring the fact that your car is totaled, your leg is broken, you’ve got whiplash, and you still haven’t been able to get the milkshake that went flying out of your hair. But you’re not dead! The other things can be dealt with, and even though they suck, they’re not worth focusing on, so we don’t need to dwell on them.

I realize this is not a parallel comparison. And I fully understand why people react like this; I AM lucky to be alive! I recognize that most people are simply trying to tell me they’re happy that I’m probably going to be ok eventually.

Cancer is such a cruel master, though. It twists the sound of words, and tricks you into questioning good intentions. While I’m really lucky to have a good prognosis, I’m really quite unlucky to have cancer. So being constantly reminded about how “lucky” I am can sometimes feel insulting.

Dealing with cancer, even the seemingly non-deadly kind, is really really difficult.

The burden of constantly wondering if this little ache, that little twitch, is more cancer is terrifying. Wondering what I’ll look like after all this is over is disheartening. Watching my best friends live life normally, and missing out on things I love is downright depressing. Taking pills and powders every day sucks. Being the youngest person in the oncology office and having everyone gawk at me is not a great feeling. Questioning every remotely nice thing that happens to figure out whether someone is just being “cancer nice” is an annoying, self-inflicted habit. Having scars that weren’t there before is sad. Being “cancer girl” is nauseating. Having people feel sorry for me is the worst. People constantly chuckling at their own terrible “shit” or “crap” puns when I’m talking about this stuff isn’t hurtful, but it sure is eye-roll-inducing and unoriginal.

Well, I’ve depressed myself just writing this. But alas, I do think it’s important. The truth is, on most days, I feel pretty ok. It’s a scary time, and all the things I’m dealing with are almost impossibly hard, but the light is not lost on me. At the end of the day, I can cuddle up and be grateful for the good things, while trudging through the bad.

Thanks for reading my long rant. <3