I haven’t written in a few months, which is the longest I’ve gone since all of this began a year ago. It’s a little hard to explain why, but the short answer is that I’ve been uncomfortable with telling the truth: that in a lot of ways, this part sucks too. Everything I read and was told by survivors or friends with chronic illnesses is that the time after the most dangerous part is the hardest. But the reasons that I read about were ones I talked myself into believing wouldn’t apply so much for me: your support network moves on; you’re finally processing how traumatic being sick really was; you aren’t actually physically better or emotionally your old self.
Not me, I thought. I have an amazing support network; I was processing this experience as it happened; I would get better quickly and feel like an even better version of my old self! Nora 2.0, right? I would be doing great—but in a lot of ways, I was wrong.
Let’s start with the support network: It’s not that my support network hasn’t been amazing—I am grateful every day for the friends and family and, frankly, friends once or twice removed who have supported me this past year (the lady web is strong!). But the general approach of the world around you changes when you are supposed to be better, and I suddenly realized that everyone has been moving on for a long time. While I stayed home for the last year, everyone else’s lives continued to happen, and I’m constantly playing catch-up.
Accustomed to being a person who Gets Shit Done, in January I looked back at a year in which I accomplished nothing. Yes, I graduated and no longer have cancer, so maybe that sounds ridiculous—but I graduated because I worked toward that degree for three years, not just the 12 weeks when cancer and grad school overlapped. And I don’t have cancer anymore because I have incredible health care and I made it through treatment—it is not an accomplishment. Lots of people do not make it to the other side of treatment, and they have not failed (though sometimes our healthcare system has failed them). Nothing about it felt active on my end, it’s just something unlucky that happened to me and I was lucky enough to survive (I will now proceed to use the word “luck” 100 times in this blog post; I have no regrets).
The moments when I remember I’ve missed a whole year are constantly surprising: I didn’t realize my cousin was graduating from college, I recently told someone that Nico was a year younger than he is, and I was unable to remember what year I started grad school because I kept missing a year in the count. I’m sure you’re thinking that this happens to everyone, this isn’t specific to a recovering cancer patient. But that’s the problem—everyone wants to convince themselves that my symptoms are actually normal, this wasn’t that big of a deal, that we are all safe from illness. “So when are you going back to work?” they ask expectantly, as if this is not a loaded question. My post-grad plan of various intense social work options (domestic violence advocacy, hospital trauma work, legal aid) doesn’t really work now that talking to people is exhausting and I get lost driving in my own Chicago neighborhood. We have to move from our Chicago home to New York on March 4th, find an apartment, learn a transit system, leave the comfort of knowing Northwestern Hospital is 12 minutes away, find a ton of new health care providers. It’s gonna be a minute.
But cancer survivors aren’t supposed to say that they aren’t great! We are supposed to be comforting, inspirational. Look at such-and-such, it’s like it never happened! People are afraid of their own mortality, so they participate in what social scientists call confirmation bias–they list out the evidence that seems to prove their ideas: But it’s gotten better! This is a fact but I am sick of hearing it because it often feels deeply dismissive. You’re out of the house! I’m working hard to be here. You look great! I mean, I think I look like a stranger/my sister/not myself but seriously thank you anyway! You’re well enough to move to a new city! This wasn’t so much a choice as a reality of my husband’s job, the one that has been paying all of our bills and giving me health insurance for over a year, so off we go! You went to a wedding, you got on a plane, you rode an exercise bike. You’re still here.
And that last one, the still being here: that’s the one that I tell myself every hour of every day. Which brings me to thing-I-was-in-denial-about #2: that I was processing this all as it happened. I’ve realized that during treatment I mostly stayed focused on survival and doing what I needed to tolerate the drugs, side effects, isolation. One day at a time—no emotional energy to zoom out and see the bigger picture of my life and that this huge, bizarre thing happened to it. Obviously, I had emotions and occasionally got upset, but mostly I just put my head down and powered through. I read back through my blog recently and it sounds like I was frequently processing the emotions of this experience. Really, I just didn’t write about the many, many days when I laid on my couch and didn’t let myself think about why I was stuck there. If I actually faced all the feelings brought on by cancer while it was happening, I wouldn’t have been able to deal with the fear, isolation, panic, and grief of the life I was missing and might never get back. Now I’m learning the hard way what I used to tell patients at the trauma center: the emotions you ignore in survival mode don’t just magically disappear. They need an outlet. Now everything I tucked away is coming out in the midst of my learning how to live in the world again.
I’m writing this at 2 am after our radiator woke me up just as I’d fallen asleep. When I woke up, I realized my left arm was numb and tingling. Yes, I was sleeping on my left side and this is a thing that happens to everyone. But I’ve had multiple people in the last 6 weeks review my high risk for a heart event for the rest of my life, and it was just scary enough (and I’m just fatigued enough to fall into the fear) that I snapped awake wondering if this was It. And then I’m up for hours.
In these moments, I remind myself: but I’m still here. Writing honestly about this time feels wrong because so many people—people I know, people I care about, people I read about who become numbers in survival rates—are not still here. Who am I to complain? I had a treatable form of cancer and some of the best medical care in the country. I won the cancer lottery (still a shitty lottery) and got on a cutting-edge immunotherapy clinical trial. I love, love my oncologist. I have the financial stability to take a little more time off work while we move across the country and get settled in New York. I am just a big ball of luck and privilege.
But here’s the thing: if it sucks this much for me, it must suck a whole lot more for the people who don’t have all of these advantages. So I’m talking about it anyway, and I hope my candor isn’t mistaken for lack of awareness of my privilege, of my dumb and beautiful luck. I am acutely aware, and I vacillate between gratitude and crushing guilt basically all of the time.
Finally, the idea that I would quickly bounce back and feel like my old self—this was probably the most laughable. Over and over survivor friends told me to just let my expectations of that old self go, to see who shows up in the time after. It’s not so much that I ignored them, it’s more that I didn’t understand what change would feel like. Before I go on, I should explain that everything I’m experiencing is totally normal. I saw my oncologist last Monday for my three-month check in and I’m right on schedule. At the very best, my course has a six-month recovery, with most people falling between six months and a year, so being at or a little below 50% energy at three months is normal—and they’ve warned me repeatedly that the move will be cognitively and physically challenging so I need to expect that timeline to lengthen.
I told them how things feel: that I still need to rest for several hours each day; I calculate how much energy I think things will take and then I rest, cancel, and rearrange accordingly. These calculations include physical demands, transit, noise level, number of people, emotional exertion, etc. There have been exceptions I can count on one hand when my energy somehow miraculously lasted—a karaoke night, an amazing wedding that required only a nap between the ceremony and reception, a few loud hours out with my girlfriends. But cognitively, I get overwhelmed by multiple stimuli—if someone is trying to talk while someone else is talking (this sensitivity has made me realize how much people interrupt, it’s crazy!) or talking over loud music or a TV (sports bars are a living nightmare), if there’s a lot of bright lights or loud noise in general. At first I just can’t follow the thread of what’s happening, and then my brain kind of shuts down, everything blurs together, and I get a kind of physical ache. It is wild.
In those stronger moments, I started to believe that this was over and I somehow beat out the recovery period. I think the people around me understandably felt the same way. But then I pay for it with days of fatigue afterward, days that no one but Nico actually sees—so my outward appearance is often pretty upbeat. I seem like myself (whatever that means) because I’m working hard at it, and it turns out I’m good at appearing to be fine.
Dr. K and our beloved PA nodded, kindly and gently, then told me that this was all normal. Things will eventually improve. Except for the things that maybe won’t, that might be a lifelong difference in energy and lifelong chronic fatigue. But it will be a while before we know whether that’s happened to me, and I should put it out of my mind. Weirdly I have gotten so good at compartmentalizing that I was able to do this after a few days, quite the victory. I pointed out with a laugh that I was never warned that that could happen, which is only maybe true—I absolutely could have blocked it out. Dr. K smiled sadly and put her arms out in a not-dismissive shrug, like, “what can ya do?” It’s not like I had a choice, like I could have said nah, let’s let that tumor crush my heart because I don’t want to risk the chronic fatigue.
But honestly, if you were to hang out with me during my carefully-curated energetic times, you might not hear a ton about this. I talk about it some, depending mostly on who is asking and how they’re asking, and I make jokes about it and about the dumb shit people say to me. And I enjoy the simple parts of getting to live out in the world again. It’s surreal, and I’ve had moments of joy and wonder at big things like being near the ocean, meeting a new baby, hanging with my old roommate in a jungle-y Miami bar, or simple things like grocery shopping and making dinner without having to take a break. There are so, so many things—good and bad—to process, that each day feels different.
So here is my point: if you know or love or work with someone who is recovering from an illness or living with a long-term illness, (or someone who is grieving, I think a lot of this holds) and people talk about how great they’re doing, know that they are probably exhausted. They are probably using energy they don’t really have to push themselves to seem normal, to smile at you. They are probably doing physical therapy exercises behind their office door and silently closing their eyes for 30 seconds to give their brains a break from the constant barrage of noise from the outside world. Has the world always been this loud? They are probably ping ponging between grief and relief and joy and drudgery and back again.
Be nice to them. Demand less of them. Understand when they cancel plans. Respect that their energy is a finite resource (oh and hey, yours is too!) and they have to be incredibly careful how it is spent. You might not understand the calculus they are using, or the decisions they are making–I am super inconsistent because the variation day-to-day is so great. Believe that they are doing their best. And know that they might not tell you how they’re truly feeling. We know that it makes many healthy people uncomfortable and fearful and awkward to hear the gritty details. For me, there are huge exceptions to this: people who do want to know, who ask open, truly curious questions, who consistently say that they understand all plans are tentative, who ask me about the dumbest comment I’ve heard lately and help me mock it. Again, I’m lucky for those people.
By and large, though, I know that you see your fears in me, and I calibrate accordingly. I am most honest with survivors, friends in treatment, and caretakers of all kinds because they’ve already lived with this fear—it’s our old acquaintance. And for everyone else, thank you for continuing to read this; it means you’re trying to understand.