That’s a very common question that I’m asked whenever I tell someone that I have cancer. For the most part, I look healthy (although my hair could really use some help. I’m not exactly bald, it just looks like I let a three-year-old take clippers to my head), so I get the assumption that I’m “ok”. It’s a hard question for me to answer though. Yeah, I’m ok in that I’m not dying at the moment. I’m ok in that my cancer seems to be managed. But it’s so much more difficult to explain that even though I’m “ok”, I’m still caught up in the churning cancer wake, and that can be mentally defeating in and of itself.
When I was first diagnosed, my doctors went through the treatment plan. I counted down every cycle, every day until the last, thinking, “ok, I’ll get through this and I’ll get my life back”. I started making plans for my “life after cancer”, thinking that it was like some flu that I was just going to get over. I wasn’t prepared for the aftermath.
What they don’t tell you is that you’re never going to completely shake free from it. You try to live a normal life, go back to work and save money for things like a house and retirement. A good portion of my job was PR and events. I was getting paid to write, socialize and network. That’s what I did, and did pretty well, up until I got sick. It wasn’t until I started trying to get back into my routine that I realized that that life was over. I remember sitting at my desk, staring at a blank word document, willing myself to come up with something–anything–to write. My brain wasn’t working. I had trouble forming sentences. I always prided myself on my spelling capabilities, but all of a sudden those little red lines kept popping up under words. Grammar rules that were ingrained in me (shout out to Mrs. Cronogue, my 3rd grade English Drill Sergeant) were promptly forgotten. I couldn’t function. My brain was mush. Chemo brain is real, y’all.
At my first event after treatment, I discovered that I really didn’t have anything to talk about. My life for the past year revolved around cancer. I hadn’t been to an art exhibit, museum, or concert, or traveled anywhere other than to doctors appointments. I couldn’t read books because when I wasn’t asleep, I didn’t have the mental capacity to focus on anything besides pain or sickness. Nobody wants to talk about the episodes of Parks and Rec that I watched mindlessly day-in and day-out. Even when I did try to hold a conversation, I couldn’t get sentences out of my mouth if I tried. Cue my newfound social anxiety. I was embarrassed. I suddenly got how some ex-convicts retreat back to a life of crime because they can’t handle being on the outside. All I wanted to do was retreat back into my cancer shell.
In my mind, I was supposed to be “ok now”, and I thought everyone else expected it of me too. I had this misconception that since I wasn’t in active treatment, I should be normal again, and I struggled with not feeling like myself. Gone was my sense of humor and fairly easygoing personality. For a long time, I tried to force being “ok”, hoping that the cloud would pass. Then cancer came back again. And again. Still, I struggled to wake myself up to work from my bed while going through chemo the second time. I felt incredibly guilty at the thought of putting the burden of bread-winning on my fiance, and I thought that giving up work was admitting defeat. It wasn’t until I almost died from a pulmonary embolism that I quit putting pressure on myself to perform and decided to talk to someone about my mental health.
A wise friend once said about her own experience with grief, “I couldn’t absorb anything more than what I was already carrying”. That resonated profoundly with me. Slowly, I started to accept that my job now was to survive the onslaught. I couldn’t take on anything other than that. Even when active treatment ends, I’m still not “ok”. I’m still carrying the weight from cancer. The aftermath of the surgeries, the effects from the treatments, the fear of my next scan in 3 months and the mental exhaustion it all takes.
But now I’m ok with not being “ok”. Cancer patient is my job, and it’s as mentally and physically draining as any career, if not moreso. It’s expected that you should be jumping up and down, happy to be alive everyday, but I still have days when it’s hard to get out of bed or break out of my funk. And you know what? I accept them without guilt because no one walks through the fire that is cancer and comes out unscathed.
This post originally appeared on Keeping Cancer Classy on January 30, 2019. It is republished with permission.