“I am gonna make it through this year if it kills me.” -The Mountain Goats
My latest CT scan was nothing but good news, and yet I’ve had a hard time feeling happy or excited or relieved or any of the things I probably should be feeling ever since we got the news. I’m sure there’s some level of trauma that I’m still subconsciously working through regarding these scans, especially after the initial treatment(s) didn’t work, because even after Dr. R gave us the good news (which she was genuinely excited about!), I immediately said, “Great, now what happens when this stops working?”
Like, calm down, Jennie. Take a deep breath and enjoy the good news for at least 30 seconds.
There’s no easy answer to that question anyway, as treatment is so individualized once you get to this point. There are more options, but it’ll depend on what exactly is going on, what kind of health I’m in…all things we can’t foresee. Dr. R gently reminded us (ok, me) that we don’t know what’s going to happen, but we should celebrate the wins when we get them.
It’s hard to do that, to be honest, when you’ve twice before looked your doctor in the eye as they gave you a dire prognosis. It’s hard not to feel like your future is being erased as you sit there, getting blurrier and blurrier before your eyes. The deal was supposed to be that if I put up with the shitty side effects of this harsh treatment, if I went through the barbaric surgery that would leave me unable to enjoy food or speak the way I used to, in return, I wouldn’t have cancer anymore. That’s not what happened and I feel cheated. I’m dealing with all the side effects of the treatment that was supposed to fix me, but it turns out I was unfixable. At times, I don’t really know what I’m supposed to be staying alive for at this point. More cancer treatments? And why? Am I just prolonging the misery?
The answer, again, is…we don’t know.
While Joe and I were driving to Magical Weird Duck Land a few weeks ago, we had lots of time to talk. I asked him if he’d seen the obituary that had been floating around the internet that week, for a woman who’d led what sounded like a hilarious and singular life. He hadn’t, so I told him a bit about it and then said, without really thinking of the ramifications, “That’s what I want mine to be like. Not like a generic resume, but something that reflects who I was. What I was like. And if it says anything about losing my battle with cancer, I’m coming back to haunt someone.”
I don’t know when I got so comfortable casually talking about my own death and death-related affairs, but I think it was probably after my last bad scan. You can only have your medical team look at you like a ticking time bomb so many times before you start to hear the ticking yourself. But I’ve become so accustomed to thinking about things like that, that I forget not everyone is on the same wavelength. I’ve surprised people several times, I think, with my death-related comments. It’s not on purpose. It’s just impossible not to think about it.
My own personal belief is that EVERYONE should be comfortable thinking and talking about death, including their own. You should be able to tell your loved ones what your wishes are, so they don’t have to guess what they might be while in the midst of grieving. And I’m a planner, so it feels good to have a plan, even for something like this. (Related: Do you have a will? Advanced care directive? If not, get on it, I don’t care how old you are or what kind of health you’re in.)
I’ve always been pretty comfortable talking about death. I used to volunteer with an organization that held support groups for grieving children, and the training you go through beforehand is pretty intense. You delve into the loss you’ve experienced in your own life and learn how to talk about death without shying away from it. One of my favorite exercises was when we were tasked to come up with euphemisms for death. There are a lot. Passed away, passed on, in a better place, lost their life, kicked the bucket, pushing up the daisies. People don’t like to say death and dying. They don’t like to think about these things unless they have to. But after 10 years of volunteering with this organization, I got used to it. It’s just that before, I was talking about other people dying. Not me.
I can’t really explain what it’s like now, to live with this specter of death hanging over my head all the time. No matter what I do, it’s there. No matter how good the scan results are, this feeling, this cancer is not going to go away. It’s there when I do things like decorate the Christmas tree, and wonder if it’ll be the last time I do it. It’s there when I hesitate to make long term plans. It’s there when Joe and I are just sitting on the sofa, watching a movie or a dumb TV show, and I start to panic, wondering how many of these evenings we have left. No matter how good I still feel or how quickly I can chase away those thoughts, the melancholy, that gaping wound left in the heart of me, it’s still there.
Still. I try to maintain as much positivity as I can, while also embracing the reality of my situation. Because, again, we don’t know what the future holds. (Believe me, we got plenty of evidence of that this past year.) And it’s good to be positive. Of course it is. But no one tells you how much the positivity hurts when you continuously get the worst news possible. How hard it is to maintain that hope. They don’t prepare you for this part when you start treatment. When all this started, I wanted to approach it with the same toolkit I’ve used to approach everything in my life: inappropriate jokes, a heap of positivity with just a hint of reality, and a protective shell of sarcasm. But it’s so exhausting to keep that up, you guys. I’m so tired.
I don’t really know how to function, good scans aside, as if I have a bright future at this point. It feels like a waste of time to plan too much when I’ve been told multiple times that my body really wants to kill me. But how else are you supposed to live your life? The truth is, none of us know how much time we might have left, and it feels weird, wrong even, not to have goals and dreams and projects of some kind. Because otherwise, what’s the point? And sure, I don’t know what my future holds, but that’s true of everyone. So I try to just keep moving forward, one step at a time.
To further complicate my feelings, my last day at my job, the one I’ve held for nearly five years, the one we moved across the country for, was last week. I’m still figuring out how I’m meant to fill that time. It’s been so long since I’ve not had a job (you know, except for that time last year when I was recovering from surgery and stuff, but I spent most of that napping or at the hospital or complaining or ALL OF THE ABOVE) that I don’t quite know how to fill those hours.
So far I’ve been navigating the uncertainty by (OF COURSE) making a list of priorities each evening that I want to concentrate on the next day. With The Big Move coming up, there are plenty of details and logistics to work through, so that hasn’t been a problem yet. It’s definitely helping me feel less lost, and it’s making me wonder…what goals outside of work have I been ignoring because I haven’t had the energy for them? What are the things I love to do that I haven’t had the time or bandwidth for that I can now concentrate on?
Some things are obvious: reading, writing, staring at birds. And though I still haven’t quite nailed down what all of those things might be, at least I know that, as of right now, I’ve still got some time to figure it out.