So, I officially had my 10th infusion on Monday. I also found out that although it is indeed #10, my total includes my first infusion of both Ipi and Nivo, and we’ll likely do an entire year of Nivolumab alone. So, according to Dr. B, this was only #9. He did say that we’re on the backside of this and although I’m not entirely sure what he means by it, I’ll take it. Sounds promising and like good news?
Everything else is relatively boring. I seemed to have strained my finger, which is annoying and painful and also even weird that I’m mentioning it. When I saw Dr. B. on Monday, he asked if anything was new and I told him about it. Seems so silly and innocuous, but cancer has a funny way of making you question every single thing. It started bothering me on Friday and has yet to go away. It’s swollen, I can hardly bend it, and I was getting kind of nervous about it. Needless to say, I was thrilled when he told me he thinks it’s just a strained tendon in my finger. That’s a perfect snapshot of my life right now, though. Something feels off or different and it’s almost impossible to not assume the worst. People tell me this feeling won’t last forever, but it sure is very real right now.
Now for the honest talk. I watched a pretty emotional Ted Talk last week from a cancer survivor. With the recent struggles I’ve been having post-infusions (largely, mentally) it was sort of refreshing to hear another survivor’s words. The title of her Ted Talk is “What Almost Dying Taught Me About Living” and you can find it here if you’re interested. One of the things she talks about is the pressures we apply to be normal once we’ve survived cancer. Let me tell you, the pressure to be ‘normal’ is such a real thing for me. I recognize that I apply the majority of that pressure myself, but I’m not quite sure how to stop it. Most of the time I feel fine-ish but I feel like I’m battling with myself to get there mentally, too. I almost feel as if the gap between cancer patient and ‘normal’ person grows further apart every day – despite the fact that I’m getting closer and closer to ‘normal’ with each and every treatment. What I’m learning is that ‘normal’ and ‘survivor’ aren’t synonymous and historically, I was seeing them as such. Cancer isn’t something that you can put away when you’re finished with it.
I recognize this is something that a lot of cancer patients and/or survivors struggle with. As cancer patients, our lives are defined by being sick. We spend a great deal of time at doctors’ appointments, in waiting rooms, hospitals, and treatment centers. People feel that once we’ve won the war against cancer, our problems are gone. We’re survivors now, so what’s left to complain about? It’s almost like a “been there done that,” approach – like it fits nicely into a box that we can put away on the top shelf of a closet. But it’s not. As the doctors’ appointments, scans, and treatments begin to decline, I personally feel as if as if I have some sort of identity crisis. My life has been altered by something so huge and yet I’m expected to head back into the real world and pick up where I left off.
I have cancer treatment and am fortunate enough to be able to go back to work the very next day. But this has been happening for so long it’s such a routine for everyone – including me. The perception is almost as if I just had the day off for funsies. When in reality, I spent a good chunk of time the Mayo Clinic, with an IV stuck in my arm, in the same room as some very sick people and their loved ones. That’s some heavy shit and resuming to ‘normal’ the very next day is, frankly, exhausting. Sometimes it feels like friends and coworkers ask how I’m feeling as if I have a head cold. I know their intentions are so, so good, but my answer is complicated. I typically respond with “fine, just tired” because I don’t know how to properly articulate how I’m really feeling. Let me start by saying I recognize there is no win here. On one hand, I don’t want to be or treated any differently at work and I want to be as normal as possible. On the other, I want to feel understood for the things I’m experiencing and I want to talk about them. This results in me just feeling lost. I feel stuck somewhere in between cancer survivor and normal human being and I’m unsure how to navigate it. I more than appreciate everyone checking in, but it’s such a complicated answer because I’m not really sure. I’m tired, confused and lost.
I’m writing all this out to hopefully sort through things myself. I know my expectations for myself are high – they always will be. And I know I’ll pull myself out of this one way or another, but I can’t quite figure out why this is such a struggle for me now. I think I’m just searching for answers, but I can’t quite seem to find them.
On a lighter note, I’m running out of appropriate inappropriate pages in my coloring book. So if you’re easily offended by bad words, don’t look at the photo below 😉. This coloring book is the gift that keeps on giving as it really makes for a great ice breaker with the nurses during treatment.