NOT LIKE THE OTHERS

The uneasiness has not yet disappeared, and I am not sure that it ever will… 

Each check-up, swollen lymph-node, or random bruise jolts my nervous system into high-alert. As I get farther away from my transplant date, submerging myself even deeper into “Society,” each doctor’s visit continues to rip open the scars of uncertainty. The walls of security I have been attempting to lay brick-by-brick  for the past two years crumbles in increasing speed as I get closer and closer to the examination table. The mortar was never quite as sturdy after diagnosis. 

Half-way through the hour-long drive to my appointment, my synapses fire and illuminate the memories of prior appointments. We have made this drive before. However, the rocking of the car as it hits the various cracks in the road now leaves us worried about tire alignment rather than the alignment of my mouth with a throw-up bag.

I am able to stave off the beasts of negativity that paw at the edges of my confidence until we reach the Cancer Center. I will be ok. As my Mom and I get out of the car, I wonder if the parking attendants can tell which one of us is the patient. It was obvious before. My back hunched at the weight of my bare head. The raised outline of my exposed chest catheters. I was not like the Others.

Where I once shuffled across the Cancer Center’s entryway, I now take long strides. The pants that were once baggy now cling to my hips and thighs. The ghostly voice of my previous eating disorder softly calls in my ear, attempting to fill me with premature guilt for the progress we’ve made. The nagging voice is drowned out as I walk past the wall of people in the car pick-up line.

I stand tall above the countless wheelchairs that offer assistance to more than half of those waiting for whichever chariot will whisk them away from more bad news or scan orders. For a moment I see figments of my previous self seated amongst the group. Frail, broken, wanting to go home. 

I clutch my Independence a bit tighter as I walk through the familiar doors, no longer the only one wearing a mask for my protection. No longer wrapped in jackets and beanies in 80-degree weather. I am not like the Others.  

As I check into the BMT clinic, the Receptionist who has greeted us warmly for the past three years furrows her brow and asks for my name, unable to recognize me from behind the mask and full head of hair. My stomach sinks a little. I know the mask doesn’t help, but I no longer feel like a “regular” at the place that served as a second home for the better part of two years.

The clinic has seemingly moved on to more pressing patients, but I am not sure if I have moved on with it. Memories linger in every corner of this room like ghosts. I recall where I sat for my first BMT appointment. Where I staved off nausea before my second infusion. Where I waited to be rebuilt in more ways than one.

My Mom and I take a seat, noting how much quieter it is due to Covid protocols. I look to the check-in desk and scan the room, attempting to assess how many patients are ahead of me. Old habits. I don’t recognize any of the check-in personnel, another reminder that the world has continued on. When my time comes, I offer my wrist to the New Face at Desk 2, struggling to hold up the crumbling facade of “OK-ness.”  

As I am banded by the Bouncer of Blood, the final bricks from what I had been building (for the umpteenth time) over the past 6 months evaporate. My poker face barely holding on, saved by the fact that now only my eyes need to sell my fake sense of security. I breathe a bit harder through my mask and allow the lens fog to cover up what my soul cannot. 

Now, only a bracelet gives me away as the patient. I play with it on my wrist, and it reminds me that I am 28-yrs-old. I remember when it read “25”… and then “26”… and then “27.” Most people have old movie tickets in their keepsake boxes as reminders of years past. I have various medical memorabilia.

As my name is called from the Nurse’s Station, I stand up and walk through the doors that have transported me into immense fear, joy, and confusion over the past few years. It is lost on me that I am not light-headed from the sudden shift in altitude. Today I have forgotten where I came from. 

The lead Nurse, a trainee when I was a “regular,” asks how I have been. A question that is just vague enough to hide whether or not they do remember me. “Doing well!,” I say, perhaps a bit too eagerly, as if maybe we’ll go get a coffee to catch up after we get through the blood formalities. 

They motion to the scale. I take off my shoes, jacket, and empty my pockets, not wanting to give that semi-dormant voice in my head even more impetus to awake. I look anywhere but the number, hoping the Nurse doesn’t announce how much weight I have or haven’t gained since our last visit. The scale beeps, content with the amount of space I take up on this Earth. Numbers are jotted down, nothing is said. We are safe for now, the voice can continue to sleep. 

I offer my index finger as the Nurse wraps the blood pressure cuff around my arm. I still know my way around a vitals collection…My fingers gently pull my mask below my chin as I offer the underside of my tongue for the thermometer. We’ve come a long way since my first time, when I pulled my mask over my eyes to allow the Nurse access to my mouth…(We laughed.)

We walk over to the collection room where the Nurse will harvest my blood. I hop in the chair, quickly unzipping my port shirt and wiping the Emla cream from my chest. The skin tingles from where the numbing cream sat all morning.

I make small talk, hesitating before I ask how the Nurse has been doing. The New York Times has filled in many of the blanks as to how the medical industry has been lately…The Nurse cracks open the alcohol applicator and the familiar smell punctures my mask. My heart starts beating a bit faster as the scratchy sponge trails the cold liquid over my port site. 

After a few moments pass, and the alcohol has evaporated from my skin, the Nurse begins the count down from three before plunging the syringe into my port. I exhale as I feel nothing, the nerves fast asleep. I try to relax, something one of my earlier nurses explained is important for easy blood return. 

No return. The Nurse begins pumping the syringe in hopes of breaking through the hold, the catheter in my neck quivering with each injection of hope and withdrawal of disappointment. Still nothing. I turn my head to the side. Pro tip from a different Nurse two years back. 

“When was the last time this was flushed?,” I am asked. 

“Uhh, a month or so ago?” (Give or take two months…)

I am prepared to stand up, a suggestion from a third Nurse I had early on in my treatment, but we finally get a return. I try to act cool, breathing away the flurry of dizziness that was starting to cull around the periphery of my brain. Hello Anxiety, my old friend. 

“You doing ok?”

The question that always left me with more anxiety. My brain ignites for one final spin, the edges of the room darkening a bit. 

Shit. I inhale. The spinning slows enough for me to nod my head and give a shallow, “Uh huh!” 

After three years you’d think this would be easy. 

The Nurse seals me up and sends me back through the doors to the waiting room. My Mom looks up as I approach, asking if everything went alright. We’ve had faster blood draws in previous visits…

“Just a sticky port.” 

My Mom suggests that maybe I should get it flushed more than once every three months.

“Yeah.” 

I know I won’t. 

I brought my backpack with me to do work, but I look around instead, observing those who came before and after me. 

The familiar muffled sounds of HGTV take off the slight edge of fatigue and anxiety that fills the room. The lady two chairs over holds her husband’s banded hand tightly, as if it is all she has and is about to lose.

The man across the room nods off, his nervous wife looks around uneasily. They are called into the conference room reserved for social worker visits. The room where I was asked if I had a last will and testament and encouraged to prepare one. I am not like the Others. 

Phones ring, the office’s holiday tree is now adorned with shamrocks for the month of March, life moves on. We are called back and led to examination room 2b. The room where my stem cell treatment all began. Only my Mom is with me this time. They don’t need to drag in extra chairs from the hallway for the rest of my family. 

But there I sit, waiting for the Nurse to come in and rattle off the list of 10 pills I used to take but have yet to say that I no longer do. I’m not sure why I don’t correct them. Maybe it’s fear that the minute they are removed from my chart is when they’ll be added back on. Maybe I cling to my identity as “Patient” and all that comes with this title. Maybe I forgot what it means to not have a pharmacy as a nightstand.

My Mom and I fill the time with crossword puzzles. 

“1970 Crosby, Stills, Nash, and Young album?” 

Mom fills in the blanks effortlessly. 

“Huh,” I say curiously as I look at the answer.

Before I can admire the poetry of the moment too much, the handle jiggles a millisecond before the door opens, disrupting the vacuum of calm anticipation that had fallen thickly over the room. 

A peppy Nurse I’ve never met before (we’ll call her Joy), walks in and introduces herself. This is beginning to feel like the fourth season of a spin-off series.

Joy asks how I’ve been and eagerly takes notes. The exchange is much shorter than it used to be. I no longer have chemo-induced hives or insomnia to inquire about. I merely work long hours and eat a lot of ice cream. My issues read like a headline for US Weekly rather than a CVS receipt. I am not like the Others. 

Joy nods sympathetically as I talk about work. I try to keep the venting short, again thinking back to the New York Times articles. She collects her notes and says the doctor will be right in. The thick blanket of anticipation settles back over the room with the sharp click of the door handle behind Joy. 

“Eggs for fertilization…three letters…” my Mom reads aloud, shifting the focus away from the impending results and back to the black and white checkerboard. 

“Ova,” I offer. My mom nods as she fills in the blanks.  

“Speaking of, has the fertility clinic sent this year’s bill for your egg storage?,” my Mom asks.

“Not yet.”

I am not like the Others. 

Each minute that passes by waiting for the Doctor to arrive sinks my stomach a little further as if it was an internal game of Battleship and my immune system has already taken out my freighter. We have been here before. There’s a certain assumption that you won’t be seen on time. The ill outnumber the saviors. 

But after a certain threshold of tardiness, your prognosis starts dipping. Once a delay in visitation has been caused by your failing immune system, you will always assume this is the case, even if it is because of someone else’s failing immune system… or merely bad traffic. 

We are connected in more ways than we often realize, us Cancer Patients. Connected through the unspoken understanding of what it’s like to look at ourselves in the mirror each morning, to stare into our sunken eyes and pale scalps. Connected through the communal assumption that we all have contributed way too many medical ID bracelets to various trash heaps and memory boxes. Connected by the fact that one medical hiccup in our daisy-chain of neighboring appointments ultimately triggers a prolonged day for the next patient.  And so the dominos tip.

Yet, for an experience that binds us beyond words, we still often feel so alone. We are not like the Others. 

Those who love us profoundly do not completely understand (unless they have unfortunately been handed a diagnosis themselves).  They see, they witness, they pray. They get close. But they fortunately do not share the full gamut of our mental wear. They have their own mental hills to climb, hills that presented themselves when we were inducted into this warped club. Yet, I’m not sure if they can fully understand the hesitancy in making plans we share or how even in moving forward, we continue to look over our shoulder, ensuring the Beast remains dormant for another day. We are simultaneously running from our diagnoses and relapses while chasing a time that seems to have picked up the pace from when we were last “Normal.” When mortality was not thrown in our faces.

Our ignorant lens is shattered in diagnosis. We are made painfully aware of the fragile glass box we had existed in up until that defining moment of our lives. The light no longer bends around what we seem to only discover in old age and tragedy, and instead rests squarely upon the facade of fragility. We now more clearly see the thin line upon which we all delicately balance. 

While we attempt come to terms with this fractured lens, we are forged in chemical fire in an effort to fuse what was shattered. And if we are lucky, we can one day inhale deeply, our lungs filling with the air of the shifting seasons as our futures broaden beyond the next few hours, days, weeks…

We are not like the Others. 

I now understand what it means for the young to feel immortal, since I no longer do. 

Remission has left me split between two selves. The Patient who did the heavy lifting to get us to this point, whose physical suffering has ended and should celebrate. And the Survivor, who has been handed a second chance and is unsure of what to do with it.  The Patient had a clear directive, to Survive. The Survivor must develop their own. Once you fight for one more breath, what do you fight for next? 

“Dinglehopper?,” my Mom reads aloud. 

“Fork.” 

With each appointment, a jagged fragment of me wants to be told that I have relapsed. I can’t shatter from what I desire.

I no longer trust my body, so my mind invites the tragedy before someone else can. Fool me once…

Yet, the much larger part of myself fears what the odds say I may face again. A mere inflection or trailing inquiry about my lymph nodes and night sweats has me gripping the armrest of the examination table tighter than I would normally. (I feel Unremarkable. Right? This is what Unremarkable feels like. I hope this is what Unremarkable feels like.) 

We’ve been remarkable for so long that we’ve forgotten what it means to feel “normal.”

There is a silent resilience to being in remission that places you in the grey. You are expected to move on, as if you are a butterfly that needs to prove there was some transitory reason you were one of the lucky few chosen for this fight. As if you have two pairs of wings to pick from during your cancer treatment: the pair you discover after awaking from a deep sleep and the pair you are only awarded if you never wake up. 

I spread my newfound “wings,” only to realize that I never learned how to fly. I tell myself that I cannot complain, since I have gone through things worth complaining about. So I remain in the shadows, observing and noting. Trying to subdue the voices of frustration for being where I am, knowing that where I am is a gift.

“Beloved fairytale by J.M. Barrie?,” my Mom offers. 

“Peter Pan?” 

The handle of the door jiggles slightly before the door opens to begin my Doctor’s visit.

I inhale deeply as my Mom and I look at each other. She squeezes my hand. 

I am not like the Others. 

Rapunzel, Rapunzel

It is interesting how the significance of hair changes throughout our lives.

At first it represents new beginnings. You are born into this world and It stares on in wonder at the fuzz gracing your tiny head. The baby-fine fibers an invitation to nuzzle and smell - each breath filling spectator’s lungs with the seemingly infinite possibilities, fears, and trepidations a baby carries. 

As a cancer patient, a bald head doesn’t garner quite the same wonder. You are thrust into a parallel-existence in which the patches of fuzz scattered across your globe now speak more about your Cancer’s potential than your own. The nonexistent fibers now an invitation for others to cling tightly - the uncertainty of time now painfully apparent to all in your orbit. Each breath filling spectator’s lungs with fears, trepidations, and the possibilities no one wants to acknowledge.

Your potential is no longer rooted in education, careers, and relationships but instead survival rates and clinical trial admittance. You are forced to sink lower into yourself than you have had to before, to turn over the rocks within your core and hope for something to make sense. You wait for your hair to grow back between infusions, an in-between existence in which you are still a cancer patient but look the part a bit less - the hair you once knew now growing back wild and unruly like it did when you were a child.

I often think about what it would be like if I could go back and visit with my younger self. Each version of my existence staring at the other with our feral curls fraying at the edges of our faces. One of our heads reminding our Mother of her own adolescence. The other’s reminding her of our fragility. 

My younger self would stare at me, confused as to why we didn’t grow up looking like Elizabeth Berkley as we had imagined. I would stare back, wishing my younger self didn’t have to grow up. I would squeeze her and inhale deeply, breathing in the neon smell of Kindergarten finger paints and watermelon L’Oreal Kids, thinking about the countless pony tails, flatirons, and bobs that hair would find itself in over the years, and how eventually it would all be gone. “You’re going to do great,” I would whisper in her ear, not sure if I entirely believe it myself. 

As a child, hair-growth marks a transition - our personalities forming as quickly as our frayed mullets. Our hair begins to reveal more behind the curtain of minivans and sedans that drop us off and whisk us away each day. We begin to identify the kids with the perfectly French-braided pigtails as those with the fully-stocked lunches - a good indication their family has a robust pantry as well as a trampoline. 

We can also identify the kids whose knotted hair extends from their scalp in every direction, unwilling to be contained much like the neon jelly that streaks across their face. These are the ones with the $1 fruit pies and margarine sandwiches no one wants to trade on the lunchroom floor. (A.K.A. Yours Truly.)

I would hold onto my younger self as I knelt on the playground, attempting to keep her from the world of comparison that was waiting for her. From being told she couldn’t be Rapunzel because of course only those with long blonde braids could be Rapunzel. From learning how to make herself smaller. 

I would guide her to the swing set she always liked, where she would feel like she was flying as she closed her eyes and launched into the air. 

I would give her a push, and watch as her tangled tresses flew in every direction. “Keep flying,” I would say under my breath, a silent prayer that I knew would be futile. “Keep saying you want to be a horse when you grow up,” I would encourage. After all, I often find myself wishing I was a Labrador these days. Curious how it takes adults a bit of unlearning to realize that maybe our younger selves were onto something.

My younger self would giggle as her swing came back down from having completed its trajectory. Any pain she’d experienced to date not piercing enough to be more than a distant memory.

I would wish I could tell her that the only time we would look like the Crypt Keeper in our life would be when our older sister decided she could save our family money on a summer haircut and removed our bangs entirely. I would wish I could tell my younger self that the only clumps of hair that would fall out were by the hand of our other sister after we had accidentally painted the nails/entire hand of her Barbie with Mom’s red nail polish because it’s a Summer color and we were in fact in Summer…

I would wish the only thing we had to watch swirl down the drain was the acrylic paint from 5th grade art camp and not the clumps of hair that could no longer withstand a mere brush of my hand across the scalp. Even if L’Oreal Kids was still an option I wouldn’t dare open my eyes mid-lather, afraid of what greeted me. 

The wooded scratch of her small velcro-shoes as they raked the mulch below the swings would  awaken me from perturbed musings. My younger self ready to move on, and I not ready for her to. I’d invite her to play House, an ironic attempt at slowing her reach for adulthood. I’d offer to be the family Labrador and she could be whatever she wanted, even Rapunzel. Even a horse. 

She would acquiesce, but would spend an inordinate amount of time doing her hair and makeup in a nonexistent mirror. I would howl in distaste as I recognized her understanding that, at a certain point, hair becomes our version of iridescent plumage and the first steps of the courting dance we practice in hopes of finding a partner. 

Hours spent flattening our curls or curling our flat hair. Again, painfully aware of what we don’t have and using heat-wand sorcery to transform ourselves. As we age, we begin to wield the power to change our hair color and length. We can now be Rapunzel. We may now let down our hair in the hopes of someone climbing up to join us in our castle. 

I would block the doorway of the old wooden house we had spent countless recess-hours inside, spinning our own tales from the foundations of those that came before us. I would look out onto the playground, long abandoned from my memory. I would let out one final yowl, a warning to all who dare enter to take us from this bubble. As I turned back, I would discover that while I was fixated on what lay ahead for my younger self, she had grown up with the dreams I had carried for years. 

I would watch as she pantomimed straightening her long hair and applying mascara to her long eyelashes. She would toss her head back and smile in the nonexistent mirror, making sure she didn’t look too fake or too normal, hovering on that razor-thin line of laid-back and beautiful. Do I tell her she’ll eventually be tipping her head back into the bathroom sink as her partner takes his clippers to the meager amounts of hair Chemo hasn’t yet claimed?

Maybe not right now.

I would watch as she ran her fingers through her hair one final time, a slight frown forming from how the thin strands tangle around her fingers. “Yes, it will always feel like spiderwebs and used floss my dear,” I bark from the doorway, still attempting to play my part in this quickly crumbling game of Make Believe. 

The picture fractures, if only for a second. In its place flashes the image of me sitting in the middle of my hospital room, alone. I run my hands through my hair one final time as I wait for my head to once again be shaved, this time by a complete stranger.  

The picture corrects and I am once again staring at myself as she frowns slightly in the metaphorical mirror. I would walk over to her and lean down to nuzzle once more. The smell of flowers lingers where the scent of watermelons used to rest. I close my eyes as I begin to wrangle our hair into the single braid we had always wanted.

If only I could tell myself to not get too attached - to forget that we were trying to be Rapunzel. 

As I weave the thin strands into a singular rope, the reel of my various hairstyles comes flooding in from the recesses of my mind. The frizzy bob that wouldn’t dare be contained. The equally frizzy shoulder length cut that rested on my under-sized button-down in that yearbook photo that left many wondering if I was learning Algebra or if I could do their taxes. The tailored curls that cascaded from my graduation cap. The peppy ponytail, only slightly disheveled after finishing a half-marathon. The reel cuts out. 

I am standing alone in the old wooden house. It feels smaller than it did. 

I realize my hair represents a lot more to me than I thought. The weight it bares and meaning it holds has shifted, like it has done my entire life. I am just now awake enough to appreciate the transformation.

I always strove to be an “Outlier.” For years I pushed myself to stand out in some twisted sense of superiority. I raced for the top of whatever mountain was in front of me, ready to claim my seat and the crisp air that was sure to be waiting at the top.

Then I actually became an Outlier. My acknowledged courage not gained, as I had once imagined, by attacking some corporate hierarchy with supreme grace and tenacity. Instead, it was earned by waiting quietly in seats until my name was called so I could hold up my flimsy wrist for a Nurse to confirm I was in fact who I was volunteering to be.

Perhaps me spending an inordinate amount of time pondering this is an attempt to find what makes me unique as I fade back into “normal” life. I do that a lot lately, spend an inordinate amount of time ruminating about where I am and how I’ve gotten here. (Pro tip: If you say you’re “ruminating” it doesn’t sound as narcissistic…) I often think about the ripples I radiate into the world. Those in front of me, on a horizon I can’t quite make out - and those behind me, taking on a new light from this retrospective vantage point.

Perhaps all of this started two weeks ago, when I cut off the shoulder length curls I had been growing out for the past two years. Or perhaps I was thrown into a spiral of introspection (it doesn’t take much to do that these days) when I was asked if I was nervous to cut all of my hair off this time.

At first I wondered why someone would ask me that. Was this a question most people are asked if they chop off their thin mane? I never had a say in the hair-loss matter before so I must admit that my litmus for people’s reactions to one drastically changing hairstyles is a bit skewed.

Pre-diagnosis, a haircut represented a slight change in my appearance that garnered a quick, “Did you get a haircut? It looks nice!,” before we all went about our days. Afterwards, it seems to represent much more.

I have been fortunate enough to work with the same Hairstylist for five years now. From day one of stepping into his salon, Paul* worked to thicken my baby-fine hair and has since witnessed the two years of growth after the tresses he had been tenderly maintaining were wiped clean.

Paul was the one who gave me the last haircut before Treatment started. 

My Mom was with me for that visit. It was the first time she had been with me for a haircut since I was probably 14. I had been falling in slow motion since my doctor told me that I had Lymphoma, my life feeling as if it was flying away from me in every direction as I sank downwards. 

There I fell, grasping for the various relics of my Life as I fell past. I clung to whatever I could, reaching for some sense of control over everything. I spent so much of my youth planning, plotting, and striving, and here I was, tumbling, scrambling, and realizing. Realizing I didn’t have as much control over my life as I thought. Maybe I couldn’t be Rapunzel. 

How easy it is to be so naive when your head is in the ground. Naive to your Privilege and Fragility. Naive to how the World spins on with or without you. The Sun rises. The Sun sets. Rinse. Repeat.

I had reached out to Paul a few days after I had received my diagnosis to see if he could fit me in last minute. I needed to get to my hair before the drugs could. Fortunately, Paul was gracious enough to squeeze me in.

A weight bore down on my chest as we drove to the salon that day. I had driven there countless times before. This time however, I hoped the road wouldn’t end. I can only imagine my Mom felt the same way, out of a profound desire that the circumstances for our Mother-Daughter salon-outing were different. I’ve never actually asked her how she felt that day. So Mom, if you are reading this, thank you for going with me to that haircut. I am so sorry you had to. 

I had contemplated trying a short haircut in recent years, never bold enough to move forward. (What would someone think?) Instead, I kept my hair long, even though my hair tends to have a mind of its own once it goes past my chin. Thin tentacles intertwining like an air plant, searching for nutrients that my head can’t seem to provide. However, a pixie cut that day represented a diagnosis rather than a decision to finally be bold.

I was not a badass. I was sick. 

My palms were sweaty as we pulled up to the salon, not sure if it was another fever spike or nerves for what was about to come. I stopped my Mom as we rounded the corner of the old brick-building. I wanted a picture, a picture of “Before,” feeling like the “After” this haircut signified was more than just an adventurous phase in my life.

We took the photo, me smiling as if it was any other day. Deep down, my heart was pounding. Not because I was afraid of what the scissors were about to do. I never had really found my identity in my hair. (If the air plant analogy didn’t paint enough of a picture as to why this might be the case, I can’t help you…)

My heart was pounding from what I was simultaneously running away from and sprinting towards. To cut my hair was an acknowledgement of my vulnerability. 

Paul greeted us warmly with a hug. I felt so much smaller than I used to in that embrace. I felt like I had regressed back into my 8-yr-old self - my Mom taking me to Fantastic Sams before the school year started for my typical bob haircut. (Nothing showed off the Dr. Seuss suspenders quite like a chin length bob…Mini-Aubrey, you saucy minx.) 

I felt like a baby bird, about to be thrust from a nest into a profound darkness that lay in front of me, waiting to engulf me with its various procedures and infusions - a darkness punctuated with symptoms that I could not anticipate and prognoses that I didn’t expect to come. I found my voice catch in my throat as I stayed in the embrace for a few seconds. My eyes burned as I fought back tears. 

If I cut off my hair, who will be able to visit me in my castle? 

I excused myself to the bathroom and ran the water as I stared at myself in the mirror. I took a deep breath and listened to my Mom thank Paul for squeezing me into his schedule today. I couldn’t catch every word, as the blood pounding in my ears didn’t quite get the memo about the principles of eavesdropping. I caught bits of what was being said, “Sorry,” (Was that Paul or my Mom? Dammit Mom we gotta stop saying “sorry” so much…) “…pull an Annie Lennox” (“Buh buh buh…buh buh on Broken Glaaaaaa-aaa-aaaasss…” Dang that’s a catchy song. Wait, what about Annie Lennox?) Thank Goodness my Mom is buying all this time for me to ponder Annie Lennox’s discography in this bathroom right now. Pull it together, Aubrey…If you rub your eyes like they itch maybe we can brush the redness off as allergies. 

45 minutes later, I emerged from the bathroom… It was only about 5 minutes but we covered a lot of ground internally in those few minutes. When I emerged, it was as if my Mom knew all that had transpired behind the bathroom door. She quickly summarized what her and Paul had discussed…Maybe we don’t cut all of the hair off today. 

I exhaled, a sigh of relief. Baby steps. I could push off the inevitable a bit longer. I didn’t need to beat it to the finish line, I just needed to stay in front of it a bit. So there I was with my Mom, once again getting a bob. (Nothing shows off a backless gown quite like a chin length bob…Mid-20s Aubrey, you saucy minx.) 

And here I am two weekends ago, asking for the Annie Lennox. This time I did not have to give myself a pep-talk in the bathroom mirror beforehand. I walked in alone, spoke without having to hold back tears, and walked out as someone who just got a new haircut.

Except this haircut did not come with fistfuls of hair releasing in the shower as follicles jumped ship from drugs circulating underneath the surface of my scalp. No, this haircut came with me continuing forward, spinning onwards with the Earth like the hair that found its way down the drain so many months ago. The Sun rises. The Sun sets. Lather. Rinse. Repeat.

I stand alone in the old wooden house, a slight squeak from the swing set beckoning from across the playground. I stare at myself in the nonexistent mirror, taking in my short hair and the neon purple jelly streak that adorns my cheek. I wipe it off and tousle my hair encouraging it to reach skyward, like it had done for so many years. I no longer want to be Rapunzel. I’ll tell everyone to start taking the stairs. 

*Names were changed to protect privacy

I AM NOT A BLOGGER…

Well now I am. Though I’m not sure one post garners the title of “Blogger.” Prior to this entry, I questioned why I would ever start a blog. As I would scroll through page after page of someone describing how their Great Aunt’s 76th birthday party made them realize the secret to their family’s baked ziti was ‘love’ (In all fairness, it was really good baked ziti…), I would wonder what I would even write about if I started one. 

This contemplation would be short-lived since I would 1) be running short on time for dinner (largely because I had spent a good portion of my evening scrolling through the saucy details of Great Aunt Gertrude’s 76th birthday party) and 2) I would quickly remind myself that no one cares about what I think. 

Hell, even writing this I question whether or not this blog makes sense.

Please note, I didn’t say I questioned whether or not people cared about what I think. I know they don’t. So I do appreciate your continued attention or even just the nicety of scrolling. But hey, maybe you are hoping that I too have some insight into the secret of my family’s Hamburger Helper recipe. In which case, please forgive my assumption that you don’t give a shit and let me divulge the secret that our recipe does in fact come from a box.

Bloggers, they’re just like us!…

Also, now is when I should note that I am in no way sponsored by Hamburger Helper. Just wanted to clear the air in case something on my Squarespace site made you think otherwise. (Full disclosure, I am not sponsored by Squarespace either.)

However, one of the larger barriers-to-entry I faced in starting a blog was the self-inflicted feeling that I was an Imposter. Now, this wasn’t a new flair-up that arose from some inane fear that the regales of my Great Aunt’s toe amputation might not hold a candle to Great Aunt Gertrude’s Roaring 20’s themed bash. (Hindsight, perhaps we all should have been a bit more wary of 2020 based on the last round of 20s we went through…) Or that the big reveal of Helman’s (not a sponsor) rather than ‘love’ as the secret ingredient to my family’s Tater Tot Hot Dish might not capture your love and admiration quite like bloggers before me have.

No, for as long as I can remember I’ve felt like an Imposter. Running Cross Country in high school, I felt like an Imposter. I was not a runner, even though I was running… 

I have been in animation production for four years and still feel like an Imposter, even though I have been producing animation…

Going through Cancer treatment I felt like an Imposter. Even though I was in fact going through chemo, countless surgeries, and the existential crisis that often comes with such a diagnosis…

And maybe now is when I should tell you I was diagnosed with Hodgkin’s Lymphoma in 2018…Probably should have led with that. Like I said, I am not a blogger…

At that point, I felt like an Imposter for trying to blend into the Public while everything about my outward appearance betrayed me. Perhaps I can’t even call myself an Imposter for this period of time, or at least, not a good one. I tried with all my might to look like the “Others” whose bodies weren’t waging some twisted cellular civil war. To avoid the nervous stares and the offhanded compliment on my “chic” haircut, a slight frown weighing down the corners of the lips that offered the olive branch of normalcy. The downward curve of their mouth always at enough of an angle to let me know that it was no secret as to why my hair was so “bold” or why I had a raised disk protruding from my right chest. No, it was never that cold in there and I was never that happy to see anyone…

I was naive to think that I would feel like I belonged once I “completed” treatment. (Though I am not sure I will ever feel like it is fully “completed.“ “Completed” implies finality. I am forever changed.) No. In fact, Remission has presented the biggest Imposter of them all.

Now when I walk through the halls of the Cancer Center, knowing it will (hopefully) be a quick 4-hour day (three of which will be waiting and watching HGTV), and the worst my Doctor will most likely say to me is that I work too much (Don’t we all?), I notice my steps quickening as I try to get out of the way of those who have far longer days ahead of them. I was there once. I know those days of not knowing when or if you’ll get to go home.

Those days of staring at the wall, trying not to think about the fire-of-a-thousand-Taco-Bells (not a sponsor), that is rising up in my chest from the piece of toast I was frisky enough to try that morning. (Won’t make THAT mistake again…Spoiler, we did.) Those afternoons of being thrown into a quick lung-biopsy because they have an opening and you have an “abnormal” spot in your chest. (How convenient…I have to wait two nerve-wracking months to find out if I have Cancer but now that I’ve been invited to the party you can throw me into a quick surgery? Do the schedulers know you play it this fast and loose down here?) 

Now at my check-ups, I find myself tugging at my medical bracelet as if to remind myself that yes, you do belong here. Not that I want to belong there. I don’t want to contemplate if I will ever feel secure again. But once again, the Imposter starts creeping out from the shallow recesses of my mind. My hair now betraying me the other way. Covering up the scars along my neck from where they took pieces of me to determine if I was another statistic. I am no longer the size of an 8th grader. My pants are no longer baggy, my eyes no longer sunken. 

Now, “Survivor’s Guilt” instead of indigestion rises up in my chest, an acknowledgement that I am one of the “lucky ones.” Yes, the lucky ones whose battles with Cancer aren’t too tragic. Our family’s lives weren’t turned upside down too much as we fought for another hour, a different day, one more year. One of the lucky ones with the strength to stand each morning and face the mirror, examining the body that bears the scars and stories of our fragility, daily reminders that all of this is fleeting. One of the lucky ones who was allowed to ring the bell, signifying infusions were over but confusion was just beginning. (Thanks, Chemo-Brain…)

Everyone says there is a “Before” to Cancer and an “After.“ If it could be as simple as a marking on a timeline. No one really talks about how the “After” looks. It’s not like those sexy reveals on HGTV, where now I have a wheel for a foot (asking for a Great Aunt…), shampoo commercial hair, and am just generally crushing my late 20s. I had the notion that Cancer was some deranged cocoon that not only changed my cells but also my outlook on life. Once done with Treatment, I would be thrust into the world anew, ready to take it on with such profound beauty and grace that would leave me serene and whole. Like I was a damn butterfly. (With a robot foot, shampoo-commercial hair, and a sick Insta following…)

Instead, I entered into the “After” ill-prepared for the mental chaos that was and continues to lap at the shores of my brain. I feel like a snow globe that has been shaken up and now I wait for the flurries to land so I may clearly see my path forward. But as the days go by, and I hit various post-stem-cell-transplant milestones, I am beginning to wonder if the flurries will ever settle. The world has continued on. I am not serene and whole. I am not a damn butterfly. 

Instead, I feel like a mental Twister living inside someone else’s body and there’s no Bill Paxton (R.I.P.) to stop it in its tracks. (He stops twisters in that movie right?) The shell of me looks the same, (I mean seriously…Couldn’t you have altered my cells to at least have better hair? I admit, I was greedy with the robot foot. The hair was a fair ask.) but my spirit has shifted. The caterpillar fell asleep and out came a bird. 

Cancer has a way of bending light and revealing the jagged edges of yourself that you thought facing mortality would soften. In bending this light, Cancer has simultaneously blurred the vision of where I see my path in life. The astigmatism of my sense of self has worsened. My understanding of time has shifted. Every passing moment, precious and to be savored. Every passing moment, fleeting and to be attacked with vigor…slowly building vigor. 

I had an identity, a career-path, and an immense confidence in my health before I was diagnosed. I seem to have misplaced them along the way.

Cancer is a great Equalizer, and does not have the patience for perfection or plans. You can fight it all you want, but Cancer will throw you curve ball after curve ball as if to remind you that you are not in control of any of this. 

Mornings spent taming your frizzy mane into perfect shoulder-length waves? Ehh, let's just 86 the hair altogether and see how that plays out. 

Rapidly climbing the career ladder towards that next promotion? How about we take a bit of a medical leave since you can’t even remember if you’ve showered today. 

Busting your ass before your 12-hr workday so you can still pretend like you have abs? Why don’t we inflame your joints and hand you a shiny new whip of a walker to tool around with. 

And then, once you are given the “all-clear,” planning is expected to resume…Once again, the light bends and the old trusty framework between which I thrived before now looks a bit more like a cage. A cage that is as terrifying inside as it is outside. I do not want to be contained as the second-hand on my clock increases in speed with each passing second. I do not wish to leave, because I know not what lies beyond the metal bars. 

I know how to be sick. I don’t remember how to live. 

Where before I was content remaining quiet, working to fill my cage with baubles and brilliant things, my voice now burns deep within my chest. (And it isn’t the Taco Bell (not a Sponsor) fire…)

Before I thought I knew who I was and didn’t have much to say. Now I feel like I am staring at a stranger in the mirror, a stranger who has been staring back at me from day one, through thick and thin. A stranger I have spent years afraid of what people think of her. A stranger I kept quiet for fear she would tarnish our meticulously manicured image. A stranger who has been waiting to speak. 

Cancer has presented me with a lot of time in my head (and Benedryl-hallucinations…). And I have realized that through my stem-cell transplant, the slash-and-burn equivalent to a cure, the foundations for who I truly am were forged.

I’ve been broken by chemicals I can’t pronounce, and rebuilt by strength I didn’t know I had.

As I step through the metal bars, away from everything I have strived for throughout my life, I am not sure where I am heading or what I will find out there. Maybe it’ll be clarity. Perhaps peace. I hope it is more of myself. 

I am not sure I will find the notion of “sense” that almost kept me from writing this blog. I don’t think I could ever make sense of going through Treatment. Being a young adult with Cancer comes with a unique set of baggage. At a time of your life when you feel like the world is your oyster, your world is confined to the four walls of a hospital room (and you are told you cannot under any circumstances eat a raw oyster…). When your friends are planning their weddings and futures as parents, you’re planning your next Treatment plan which will most likely leave you infertile. At a time when careers are taking off, you’re left wondering if yours still fits.

But the sadness in all of this is that I am not alone. Roughly 80,000 other young adults (15-39 years old) join me every year, and that number continues to increase. We are a group of people who have hit the jackpot of all “journeys,”* bound together by our joint-appreciation of the scars we bare and the pain we bury. 

I am not the authority on Cancer, though I am a Cancer Patient. Much like I am not a Blogger, though I have somehow managed to start a blog.

But perhaps I will find a purpose in all of this all. Maybe whoever reads this, be it Patient, Caregiver, Friend, or Lost Soul, will find a little more of themselves too. Life hands us all lemons in one way or another. I’ve found they’re a little easier to chew on with someone saying, “Hey, I’ve been there too.”

So here’s to the Imposters (Not to be confused with identity thieves…I am not raising a glass to criminal activity…). Here’s to those who are feeling a bit lost and unsure of where to head next. Here’s to those who have had their snow globes turned upside down and are also waiting for the flurries to land. You’re not alone. Not by a long shot. 

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** Cancer Support Tip: I have yet to meet a fellow Cancer patient who particularly enjoys their Treatments and scars being chalked up to a “journey.” It is also a term that is most often used with young adults, as if it is some right-of-passage trip we are on like Rumspringa. This is not a trip. We will not be birthed into this world anew like some pickled butterfly. Cancer is more like a “dumpster-fire” than a “journey.” 

Can you use that word in a sentence? Why yes, yes I can.

SOLID SUPPORT SENTENCE: “We may not understand this Cancer dumpster-fire you’re in, but we are here for you.” 

IFFY SUPPORT SENTENCE: “It is really amazing how much your Cancer Journey has changed your outlook on life.” 

At least with the dumpster-fire verbiage us patients have the imagery of rising out of the trash-blaze like a badass Phoenix, rather than some dainty butterfly. (No offense butterflies, I know you do a lot of important work and are badass in your own right, but being born from flames as opposed to a long mummified nap just seems cooler.) 

And I get it, Cancer is hard on everyone, not just the patient. So let’s figure out how to navigate the Great Dumpster-Fire together… Thank you for coming to my TEDtalk. (I am also not sponsored by TEDtalk. I have no sponsors…) 

DOCS & glass houses

If you don’t like HGTV, don’t get Cancer. I mean, even if you thoroughly enjoy their programming I would strongly advise you don’t get Cancer. But, if find yourself joining The Club, get your hardhat ready because what I gather from my experiences across four cancer centers in three different states is that they all play HGTV in the waiting room. 

Now, you might get a wily peer who builds up the hutzpah to change the channel, but 90% of the time most of us are too fixated on trying to not throw up to worry about it. So there we sit, in an open room being told how a Rust Enthusiast and an Eraser Entrepreneur fresh out of college can afford a $500,000 demolition. Their enthusiastic “Ahhs” mixed with the inevitable distaste in the primer being used in their bathroom fill the vacuum of silence that falls across the berber carpeting of our holding pen. 

The only reprieve from the demolition sounds droning in the background are the yells from the Check-in Desk for “Johnson…Desk 2!” Everyone’s eyes flick up from whatever they are doing to occupy their brains from realizing they shouldn’t have had the second Saltine in the car to see which unsuspecting victim is Johnson. Ahhh…not who I was thinking. Truthfully, Johnson’s caregiver looks a bit worse for wear than he does so kudos to Johnson…Keeping it TOIGHT.

But as we sit, waiting to get called forward to receive another week of flimsy security or orders for more scans, HGTV shines down on us. It serves as a reminder of how the other half lives. A reminder of how one day we too can join them, if our treatment plans don’t fail us and our medical bills aren’t too high of an impediment for a mortgage. 

When my Cancer treatment became a full-time job, and the Hospital quickly became my office, I thought the TV programming was a joke. I would laugh as I went from waiting room to waiting room, HGTV waiting for me with each turn of the hall. 

It’s one of those choice moments were you start laughing and soon realize that you’re the joke. Everyone else is up to speed on this standard TV-faire, but your naiveness and ignorance is what is laughable. HGTV was there long before you arrived.  

Let’s do some quick math… 

Based on some rough Googling, there are 6,090 hospitals/medial centers in the US. Lets say there is an average of 10 waiting areas in any given hospital (we’re lowballing it here...). That is 60,900 waiting rooms in the US. And let’s say 75% of those have TVs. That’s 45,675 TVs, all inevitably tuned to HGTV...one of the most politically neutral television stations available.

And let’s say those TVs run 12-hrs a day. That’s 548,100 hours of HGTV being watched across the nation’s medical centers in one day. 62.5 years of HGTV is being watched in a single day. (Full disclosure, this is lingering-chemo-brain math with a very limited research stipend…) Did I just rock your world? 

Probably not, but it is something to think about isn’t it? 

If Cancer patients weren’t at a total risk of infection, our cognitive function wasn’t semi-impaired from treatment, and we weren’t experiencing lung-failure or muscle-atrophy from the intense drugs being pumped through us, we would make one hell of a home renovation team from the equal amounts of HGTV being pumped into us from the waiting rooms.

The waiting rooms where we sit, offering up silent prayers for our Doctors to tell us we are “Unremarkable.” In return, the communal vestibule in which we find ourselves offers us flannel, hardhats, and a bandaid of “Normalcy” that frays at the edges.  

At first I thought Food Network was another neutral station that could add some variety to the television screens keeping us company day after day. But once you hit round one of chemo, you quickly realize that you are not some programming savant whose purpose in life is to revolutionize hospital waiting-room TV offerings. 

Even my mom suggesting something other than buttered noodles or ramen most days resulted in a cringe and an aggressive head shake. A futile effort in attempting to keep down whatever meager amounts of sustenance remained in my stomach.

So, maybe Guy Fieri and his trashcan chips should sit this one out.

What I am curious about though, beyond how all Hospitals appear to be on the same cable and shitty wifi-plan, is who determined a network dedicated to rebuilding a rotting foundation was the entertainment of choice for a group of people who are attempting to do the same with their bodies? Fundamentally there is some component of our cellular structure that has decided to pilfer our natural foundations. Much like these homes, we too are seeking to be saved. Salvaged in some way. Except ours is a matter of Life and Death. Our valuation is rooted in life-expectancies and in breaths versus real-estate appraisals and market appreciation. 

It is interesting how a network whose slogan is “Home starts here,” is played on loop in an institution whose slogan could arguably be “Life starts here.” To the average person who watches HGTV, the personalities and designs may represent the hope of finding their own little corner of the world to call their own. For me, it is a reminder of the impending stress of waiting for the results of bloodwork, scans, or biopsies. Waiting for the hammer to fall again, shattering this slow-growing illusion that I may actually be ok. 

It annoyed me, seeing these smiling people choosing to buy homes, while I sat choosing what chemo plan I needed to try next. These couples were dealing with a hiccup in construction, while I was dealing with a hiccup in my immune system. The stakes seemed drastically different.

I could barely walk into an appointment without someone holding me up. A twisted marionette, broken and tangled in the various IV tubes leading to my chest. While on the screens, Foremen stood swinging hammers and breathing in dust, puppet-masters of demolition.

These families were planning their dream home. I was just dreaming of going home, tired from a day of sitting in a waiting room only to be poked and prodded and asked if it burned when I peed. (P.S. It shouldn’t…so if it does, go get that checked out.) 

At first HGTV seemed innocuous. Then it taunted me. Now, it’s a bit like a familiar friend. Again a sign that my appointments are fewer and farther between. A sign that my immune system hasn’t given up on me yet. Allowing me to take it for a spin a little bit longer before it throws us another curveball. 

HGTV is a part of my medical soundtrack. The tinny sound of the voices as they radiate from the screens perched in the corners of the room. The way the sound waves hollow out as they hit the carpeting, crushed by the shuffling feet of whatever fellow stem-cell patient is finding their seat in the waiting room. Finding the seat from which they will offer up their silent prayers. Please tell me I am “Unremarkable”…

Now as I leave my appointments, I often look up one more time as I pass the TV, soaking in whatever last bits of open-floorpan knowledge I can absorb before I’m back in a few months time. 

I am “Unremarkable.” I am safe for now.