I haven’t written here for awhile. This isn’t because things haven’t been going well — it’s because things have been going. In mid-June we learned that my brain tumors were growing again and I started a chemo trial of ARRY-380 — 5 magic little pills that I took everyday and stopped the brain tumors in their tracks with no side effects. Kai and I got married on June 27th — we had been talking about it since November, and when the brain tumors came up, we figured hey, why not? We then set about planning a larger ceremony and reception for early October and in late September, two weeks before the wedding, found out that my brain tumors were growing AGAIN. So much for the magic little pills. We planned a two week “wash out period” for the ARRY and a new chemo trial. But, less than a week later, I started seeing skeleton-robots walking around one evening and woke up thirsty that night but refused to let Kai go into the kitchen and get me water because “I’m in another dimension and if you leave you’ll never find me again” (on the list of the interesting ways to terrify your husband in the middle of the night, that’s at the top). Cue one midnight MRI, which revealed that (thankfully) my newfound dimensional-skeleton intruder woes were not the brain tumors but the excessive edema swelling around them. Cue steroids and a new chemo regime right the fuck away — lapatnib (tykerb) and capecitabine (xeloda) — which I’ve been on since then. They’re not so bad and I have scans in a couple weeks.
So, it’s been going.
But in the midst of all this insanity, other things have been going as well. I published this piece with Elle Magazine online and got my first academic article accepted into the Winter 2014 issue of the journal Studies in American Naturalism. Dana Farber’s online newsletter Insight contacted me about writing an entry for their blog, which should go live later this month. I’ve broken through the thick, thick ice that was encasing chapter three of my dissertation and finally started writing that productively too. I’m in the processing of donating my beloved Super Pony to a therapeutic riding center, which will suit him better than his current once-or-twice-a-week-trail-horse job. And then I’ll find a new horse to take on — one I can actually use some of my dressage training on (once upon a time, I was a pretty accomplished rider). And I’m still climbing.
And I think that’s the point, or the truth of a stage iv diagnosis. Whether you like it or not, things keep going. Your cancer keeps being there, but so does your life. And you can choose which one you embrace more. Cancer, its treatment, and all the side effects associated with both are going to take the time and energy that they will from you. Lapatnib and capecitabine suck. Climbing and riding and barn work are harder than they should be. I haven’t been able to fit into my jeans since the wedding (which was delightful, by the way) because of the swelling and bloating from the steroids. And don’t even get me started on hand-foot syndrome (boy does that make climbing fun these days).
But, as stubborn as all those side effects and symptoms may be, I’ve chosen to be more stubborn. I’ve chosen to orient my thinking and doing as much as I can around the things that make me happy. The things that make me feel healthy. The things that make me normal. While I’m always as honest as I can be and never deny or hide how sick I’m feeling, I do my best to deny that sickness center stage. I do as much physical activity as I can and on the days I can’t, I relish the opportunity to binge on Parks and Rec. I make as many jokes out of the more bizarre side effects as I can (like, seriously, skeleton-robots? Another dimension?). And while I hate the weight gain with a passion (thank god I’m finally weaning off the steroids), I’m pretty sure I love yoga pants more.
And those are the things I want to hold onto — the things that keep me afloat and remind me who I am despite the cancer. Those are the things I have to hold onto, that I have to cultivate actively for myself because, when you’re stage iv, you need the good stuff to overcome the bad stuff. At the end of the day, as long as you’re alive, you still need to live with yourself. And no one other than you can make that living any better. Like Kai and I are fond of reminding each other, “You need to be your own number one fan.” You need to just keep going.
I’m always going to be a cancer patient. That’s just what having stage iv is. But I’ve been and I’m going to keep being Kiara for way longer than that.