Introducing me.

It’s early October 2019, the first week of my Junior year, as I rub my hand over the growing golf ball on the right side of my neck.  “It’s so weird” I laugh on Facetime with my mom, “I keep trying to thrust my neck and knock it out”.  She laughs too and says, “you might as well visit university health services.  It’s free and next door – it can’t hurt”.    

That one unexpected visit has now turned into each day and night spent roaming the mustard halls of the daunting University of Wisconsin hospital.  Here, I am given a window room, which directly overlooks the main street running through campus.  Peering out I see the herds of students, decked in red and white as they trek to Camp Randall for today’s football game.  At night, laughter and screams fill my room from the nearby overflowing bars, sending me into a state of disbelief.  I feel as though I’m playing a video game, looking at a screen of the many characters and the life they live.  Looking up at the spotted foam ceiling, I wish to click my ruby red slippers as I lay here 1,800 miles away.  Like Dorothy, I remind myself there is no place like home.  I hold my body as I have nothing else to hold. I feel depleted and lifeless.  

In my time here, each day has brought a new scan and each scan has brought a new needle.  After another morning scan, my doctor enters as a frown defeats her smile.  She leans in close as her glassy eyes meet mine. “I’ve been studying your chart and your symptoms for quite some time now”, she continues, “My gut believes its lymphoma and to move forward with urgency”.  She gives me a moment to call my parents back home in New York.   Before I can even call, I frantically google.  “What is lymphoma?”,  “Rate of doctor being wrong about cancer diagnosis”, and so the list goes.  

Calling home, my dad answers.  A doctor himself, he questions her prognosis, condemning her professionalism.  “She is completely out of line to even mention cancer at this point” he says.  “I even called a friend in the oncology department.  Swollen nodes are all too common among adolescents.  It’s nothing to worry about just enjoy school kiddo”.  “You know best” I say hanging up.  But for the first time I don’t think he knows best. 

As the days go on, so do my symptoms.  Lately, I have taken on nocturnal habits.  At night, I am awakened by the hour – panting uncontrollably and drenching in a pool of night sweats.  During the day, my legs collapse upon hitting the floor, sending me back to sleep until the feeling of throw up overwhelms me as I grab the trashcan on my nightstand beside.   The rumors of my troubling anorexia among my sorority sisters crawl beneath my skin.   If only they knew I think, if only they knew.

I lay back still and begin to doze off.  The loud ring of my phone startles me as I see it’s my younger sister Ali calling.  I decline abruptly, texting her  “Running into a test!”.  I curl under my ivory polka dotted duvet with another round of paralyzing chills. I don’t want her to see my pain.  I don’t want her to see my string bean arms and bloodshot eyes.  I don’t want her to see my suffering and loneliness.   I just want to protect her.  “I’ll call you later” I write, “I love you baby girl”.   

Back home in New York, it’s now December 12. Since Thanksgiving, the days have been dedicated to the now clementine sized lumps swarming my body and those they continue to find.  But today this is put on pause.   It’s my 21st birthday and all I crave is the substitution of scans and surgeries for cake and celebrations. Its 10am as I pull up to the DMV to update my license which includes a well needed new picture.  In my current license I wear small hoop earrings and a butterfly necklace.  Today, I accessorize in a creamy 8-inch neck bandage from an emergency open surgery two weeks before.  

I sign in and find a spot near the back, squeezing onto an old wooden bench as I wait for my ticket number to be called.  My phone rings.   I don’t need to answer to know what the other line says.  It’s just one of those things you feel … you know.  “It’s cancer”, my mom says.   Everything blurs and the only sound I hear is my thumping heart.   I try to speak but only air makes out.  Number #136 is called, and I tell my mom I have to go.  

Back in the car, my strength fails to start the engine.  My mom’s words echo.  Her voice is filled with such sorrow and sadness in ways I’ve never heard.  Her tears are contagious – I recline my seat and cry.  Alone in a parking lot on my 21st birthday, I cry.  I don’t cry for myself but for the pain I have inflicted on her and all those who deeply love me.  I cry for the pain I have caused and for all the pain I know will be caused.  I cry as I feel her false sense of failure to carry out her role as my protector.  She is my rock and as she crumbles in deep sadness, I know I must rise in strength – the strength to protect her from all my cancer bears.

It’s now the week before Christmas as I return to school with my mom to pack up my apartment.  Walking through the halls I feel completely empty and lost, like an alien touring a foreign planet.  I see the stares and hear the whispers that swarm like bees in a hive.  On the flight back home, I reflect on everything left behind and everything ahead.  The city below glimmers and I hold my mom close. “It’s okay”, I tell her, “I promise you this will all be okay”.  I know this is what I have to tell her, and I know this is what she needs to hear.

Back home my days consume of cleaning up my trail of chocolate hair that follows wherever I go. I wake up swimming in its sea and pull out more handfuls with the slightest touch by the day.  The what-if my doctor warned me about and endless google searches of “bald cancer girl” is finally my reality.  But the other reality of the haunting what-if’s we all face, is what we make of them.  What we make of all that’s out of our control and let me tell you a lot of it is.  As humans, we often find fear in our lack of control but what I have learned and continue to each day is the beauty in it. 

It’s February 12 when my front door rings as light snow falls.  I sigh with relief.  It’s my childhood hair-dresser Wendy in her deep flared jeans, chunky jewels, and a bright smile.  Music plays as she unwraps the shiny razor.  My dad goes first, followed by Willie, my mom and Ali as the weight I had always known on my head becomes light.  They cry but I laugh.  For the first time in a while something is done on my terms.  I decided to shave my head.  I decided the date.  I even decided the razor. I feel at peace as I hug Wendy tight.  John Mayer’s War of My Life plays as I dance around the room.  Bald and 21 I dance.  I look around at the love that fills my kitchen – a constant reminder that cancer is only a piece of my puzzle – not the puzzle itself. 

Fast forward and COVID- 19 is still just another thing on the news.  I have seen it shred the lives of others, but my bubble remains untouched.  That is until today March 23.  For the first time I am not followed by a caravan of family and friends, games and treats as I enter the hospital’s towering glass revolving doors, but alone in a soft gray beanie and N-95 covering the majority of my ghostly face.  A security guard escorts me to floor 17 where I am handed off to nurse Addy who leads me to an isolation infusion pod for today’s chemotherapy.  I no longer can catch up with my chemo mate Stan about his cat’s expansive diet or kill time gossiping with the nurses at their station or even sneak off to the kitchen to stock up on extra graham crackers and peppermint paddies.  

Addy enters my pod wearing a hazmat suit from head to toe with a narrow slit to see her piercing blue eyes.  I remove my beanie and hold her blue glove in my hands.  She struggles to hold back tears, but I assure her it’s okay.  “You can cry” I whisper as my voice cracks.  The similarities between our lives pain her. Looking into my chestnut brown eyes and sparkling head, her own fears overcome her.  She is reminded of something out of her control and, again, I am reminded of something out of my mine.

It’s June 9.   As I drive back with Willie and Ali from picking up some Chinese for dinner a police car greets us at the top of our street.  “Are you Lizzy?” the officer asks.   “I am” I hesitate.  This cannot be a good sign I think to myself.  “In that case, let’s go” he laughs and blasts his sirens.  In the car  “Fight Song”  by Rachel Platten is on full sound as 200 cars filled with screaming people, colorful groggers and homemade signs line the block.  

I look at Willie and Ali in confusion and happiness and everything in between, absolutely shell shocked.  Over the noise Ali yells “Surprise” as Willie chimes in “This is all for you!!” 

This time they laugh while I cry.  I see Wendy and my kindergarten teacher, my middle school soccer team and childhood neighbors.  Time stops as we drive in slow motion, swimming in the cheers and the many many tears.  As I look around, I see whats been right in front of me the whole time.  Flashbacks of pure laughter and shaving my head, long wheelchair walks to the beach, and even charades during chemo – they all rush basck jabbing at me, yelling like the angel on my shoulder “don’t you see! People want to be let in”.  

I realize I saw strength as putting up a wall, hiding myself from the perceived pain I would bring others.  But the reality is people want to be in it and those who don’t are stopped by their own fears.  I learned that it’s easy to see others at their best, but it’s another thing to see them and stay with them at their worst.   I now live knowing that true strength comes from within but also from letting people in … letting love in.  It comes from surrendering control and embracing vulnerability.  I didn’t need a parade to prove it, but it sure did open my eyes.  I still find myself overwhelmed by the amount of support and love I have received since that day in the parking lot. 

But as I wake up each day I push myself to smile in the mirror.  My smile reflects fierceness and fortitude, compassion and courage, grace and growth.  I now rub my hands down my smooth neck and stubbly hair, reminding myself that cancer does not define me, but is simply and forever a part of me.    

Don’t jump.

Today my mom texted me she wanted to “jump ship”.  She was overwhelmed with the complicated facets of life.  We’ve all been there.  “Don’t jump. Protect yourself with a life vest and become the captain”, I responded.  

Cancer had pushed me from the grand vessel, leaving me to drown in the murky unknown water below.  This was exactly where my mind went after receiving my diagnosis.  I was paralyzed, seeing the clouds above enchantingly move and passengers aboard continue their merry ways.  I was alone in the crashing waves.  Helpless and hopeless.  

Plot twist – I didn’t drown.  

The simple moments.

Seeping into the two-inch gel mattress , which acted more as a barrier between my bony body and cold stone floor beneath it, I heard little footsteps nearing.   This was my humble abode for the 8 “bad days” that followed chemo.   Looking around, the white marbled bathroom felt castle-like.  Here, I was alone with my thoughts. The only sound was that of my struggling lungs gasping for the air molecules, which so teasingly fluttered through my swollen eyes.  “Pizza night” was soon announced as Ali pranced through the sliding door separating my loyal chambers from the rest of the world.  My desires to leap up and hug her were all too faulted.  I lay still – head to toe – just as I had all day and night with the exception of my opening mouth for the colorful pill that came its way like the parking meter as it waits for its feeding of the next dirty quarter.  As the overwhelming smell of the homemade pizza sent me into a trans I was reminded what that it is the little moments  that make the journey.  The simple moments.  

Words from Willie.

This past semester, my world was shaken by life's uncontrollable events. After a four year battle with medulloblastoma, Pierce Slutzky, a very close friend and teammate on my soccer team for eight years, succumbed to his battle with cancer. After years of pool parties, soccer practices, and late nights playing Xbox, my teammates and I were forced to face the realities of life as we buried someone we considered a brother. No seventeen year old should ever have to bury a friend. Just two months later, after the tragic death of Pierce, my own sister, Lizzy, was diagnosed with Hodgkin's Lymphoma several days before her twenty-first birthday. I was in a state of shock. My older sister who I live with, look up to, and love so dearly had been afflicted by a disease so rare and deadly. In the midst of such chaos and sadness, I couldn't help but notice her optimism and positive mindset. Despite an unpredictable future looming ahead of her and the loss of an incredible opportunity to study abroad during her junior year at college, Lizzy has remained calm and stayed determined to fight. She has instilled in me vital values and new perspectives. First, I have taken into account how turbulent and impermanent life truly is. Lizzy's experiences have helped me focus on the big picture of life, instead of tiny, irrelevant things that we often get caught up in. As someone who has always cared so much about my hair, I will be shaving it off to stand in solidarity with my sister through her journey in chemotherapy. Losing my hair will not alter my ability to be happy, pursue my goals, and continue to be the person I am today. After encounters with these challenging circumstances, I have become a more evolved person with my outlook on my future, and I hope to leave a mark on others, just like Pierce and Lizzy have left on me.