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Can You Tuck Me Back In?

I opened the internet to write this post and it dawned on me that I couldn't recall the name of my own blog site. I forgot and it's not because I have been off gallivanting away from the wide world of cancer -- it's good ol' "chemo brain," an umbrella term we use in this realm to describe the memory problems and forgetfulness that often coincide and last long after chemotherapy ends. Right now it's 9pm and as I'm editing this opening sentence, my phone alarm is reminding me to take my medication. Up until December 23rd of last year, the same nightly alarm (pill emoji and all) woke my otherwise dark phone screen. Back then it was a 'NO BABIES' birth control reminder, these days it's for a pill just about the same size -- except this one ensures my body stops producing estrogen. How's that for a mind fuck? Thanks, universe.


The first few months after my diagnosis revolved heavily around my own ignorance. Despite being an ER nurse of three years, I was quickly humbled by my lack of oncology knowledge. I shutter thinking about the hundreds of interactions I've had with cancer patients who've found themselves in the ER, my insensitive and fast-paced ritualistic care likely providing absolutely no comfort to them in a terrifying time. Placing the human experience of tragedy aside is not only a strength, but a requirement of those of us who work in critical care, allowing us to carry on with our days and proceed with our lives without the burden of grief and loss lurking behind. Avoiding grief used to be habitual to move on to the next emergency or life that needed saving -- until I had to save my own.


The months since my own forced awakening have shone light on the ignorance of the people around me -- strangers and loved ones alike. I spend copious amounts of minutes reminding myself that I shared in the same bliss once upon a time. My bliss was smashed, rather quickly, with a diagnosis and the rapidly-following pokes and prods and slices-- it's easy to feel like a rag doll these days. While typing this, I'm humored thinking of my first week of college, when my sister took me to get my very first tattoo, a teensy sailboat on the inside of my right ankle."It's freeing," I told all my friends. My parents didn't find it quite as charming, and usually respond with the usual "please stop mutilating your body." If only I knew that eight years later I'd hear the same words echo through my mind as I stare at a reflection of a body that no longer looks like my own -- covered in scars and missing parts. Suddenly sailboats don't seem so problematic.

As I've become more social over the last few weeks, the ignorance seems to be more abundant. Genuinely, however, I don't always mind. Sure, sometimes it's unwarranted and often starts with "If it were me, I _______." I usually keep to myself in these instances rather than the alternative, but the reality is you likely don't know what you'd do/feel and if you started that sentence with those words, then I know we have not walked the same path. Other times it's more along the lines of "I don't know how you ____." This one is a tight rope walk somewhere between respectfulness and isolation -- I don't know how how I do ___ either, but when there's no alternative, you find a way. Other times, If I'm being honest, I don't mind sharing in the ignorance, taking a walk in the land of bliss and imagining a world in which everything really will be okay. It's not that I don't share that belief, but expressing hope takes a lot more effort when you've been faced with your own mortality, it's the scary scene of the first horror movie you saw at age seven that you'll never forget. You might not watch the movie ever again, but it will always be at the epicenter of your nightmares. And if/when the fear dissipates, those moments expose the drywall that is ever-evolving sadness. Suleika Jaouad hit it on the head, "With mortality in the balance, one of life's most delicious activities when you're young -- imagining your future -- had become frightening, despair-inducing exercise... thinking about the past stirred a nostalgia I preferred not to dwell on, a painful reminder of all I had lost, was losing." It's the nostalgia that weighs the most, that and grappling with the concept of grieving your own life -- the one you pictured for yourself before interruption -- for the rest of your life.


While the naive comments do strike a cord here and there and the overtly stupid ones really provoke anger, there is one type of remark that cuts sharper than the rest: the one that never comes. Shortly after I was diagnosed, someone posed the question, "What's worse: people who come back into your life because you got sick, or people who leave it?" I think about this often for a multitude of reasons, and had you asked me eight months ago, I can't imagine I could sit with the narrative of pity surrounding the former. But time has passed, people have moved on with their lives. Now that I've experienced it, there's nothing quite like the feeling of doggy paddling in rough seas, just barely afloat, and realizing that the people who you thought would be swimming alongside or throwing you a lifesaver are actually on a faraway beach with a drink in their hand and reggae music blaring. While you were watching your hair fall out in chunks and mustering enough energy to get out of bed, they were basking in the sun. While my life was on hold, theirs moved on. Perhaps they forgot you were drowning. Or maybe they just aren't sure how to show up after missing it all. Maybe they don't deserve that much credit. Or maybe they think of you often, unsure how to make amends, and deserve more.


The days since finishing active treatment have been quite literally exhausting. First overcoming the actual chemo fatigue, then from the energy utilized while coaching your mind and human how to exist in the world again, how to trust in happiness and joy the way you did before trauma stole it, and how to enjoy solitude and quiet again. When I was little and couldn't sleep, I used to tip-toe out of my room, blanket in hand, and sit next to the bannister on the top stair in our foyer. It was late enough that I should've been asleep, but early enough that the chandelier was still lit and I could hear my dad downstairs finishing work in the office or watching tv in the family room. Sometimes I'd fall asleep there waiting, other times I'd call downstairs for him to come up and tuck me back in. I'm not sure what brought me out of my room in the first place back then, but lately I've found myself sitting with that little girl, fearful of the dark and stillness of a quiet room but this time with no blanket, no staircase, and no one coming to tuck me back in and remind me it was just a dream.


I'm still working on this stuff, and coming to terms with the fact that it will likely be active work for the foreseeable future. It has been 82 days since chemo last ran through my veins and 35 since the port from under my chest that aided in that process was explanted. The pale, bald spots on my head are now covered with dark brown fuzz and I no longer require twenty minutes to draw eyebrows on each morning. I can leave the house without pills to account for the possibility of nausea, headaches, infection, anxiety. I have returned to work as a nurse, no longer in the role of patient, and can show up for other people because an incredible team of superhero doctors showed up for me. Some days are heavy and require more emotion processing, but more and more are full of little pieces of joy: walking to my favorite coffee shop each morning (few things go better together than an oat milk latte, sunshine, and good music), live music venues full of people enjoying one another, standing outside in the rain, adding a new plant to an already cozy room. There are days where I grieve who I was and even more so, who I thought I was becoming. But there are also days where I embrace who I will still become because parts of this experience have inevitably and undoubtedly made be better.


When reflecting on her own battle with Leukemia and the feelings that emerge with reintroduction to society, Suleika Jaouad (my queen) writes, "... it feels like the beginning of a new kind of reckoning. I've spent the past fifteen hundred days working tirelessly toward a single goal -- survival. And now that I've survived, I'm realizing I don't know how to live."


If you don't hear from me for a bit, know it's because I'm out exploring the big, daunting, beautiful, scary, adventurous world... and learning how to live again.


TT




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