Life Just seemed Too Hard for a 22-Year Old

by Urska KosirMay 2, 2019View more posts from Urska Kosir

On writing a blog and how it all began

I have always liked writing. But despite countless written pages I seldom shared any of my written work with public. Well, other than my cat who yawned at the sound of my wannabe witty puns. Nevertheless, in 2015, I finally decided to start my blog. I had just completed my first cycle of chemotherapy and thought that by sharing my story I can keep people whom I care about informed about my progress.

This blog had no particular destination, rather, I wanted it to be a journey. A journey through moments of what – I wrote back then – might some day turn out to be a life changing experience, moments that will shape my future, mold my personality, or maybe simply moments of joy that will bring back memories from my early 20s.

I was a college senior at Yale University, my family was an ocean away (in Slovenia), and I was a 22-year old, whose life and hobbies had to be put on pause because of cancer.

Here is how it all began:

I recall returning to campus in late August. I just got back from Europe, I was energetic, felt inspired, and excited to start my senior year of college. For a split second I felt as though I knew where I was going: towards graduation in May and towards obtaining a Master’s degree in Public Health before I continue my career in medicine. I had my schedule set up; it was busy, but I was determined to get through it, tough it out, and make the most out of every moment.

Classes were rolling, homework assignments, and research was piling up. In addition, an on-campus job and volunteering at the hospital seemed to have consumed most of my energy, and my plans to do all the studying at night soon failed.

“Do you ever feel this tired?” I asked one of my closest friends,

“Oh yea, I am sooo tired! I just want to sleep all the time!”

Oh well, I thought, school just never gets any easier. I was tired just like any normal, hard-working student. The only thing setting me apart was a lump on my neck. But I didn’t have time to worry about that.

As September turned into October my days kept being functionally shorter. I felt as though I could sleep through everything if I wanted to, but obligations kept calling. The lump on my neck was also still there, most of the time making me feel self-conscious. As if wanting to grab my attention to go check it out. Waiting for me to unwrap my scarf and denial in which I wrapped it. Looking at myself in the mirror one day, I took a deep breath, and dialed my doctor’s office number to set up an appointment.

When asked what was wrong, to be honest, I didn’t know. All I said was: “Life just seems to be too hard for a 22-year-old”.

The first appointment resulted in a few tests, and my doctor consulting other doctors. Second appointment brought along more tests, and more appointments. And then waiting for the results.

And Midterm exams in between…

And another morning at Yale Health Lab…

And a class presentation in the afternoon…

And a CT scan next morning…

And Halloween party that night…

And here I am: a cancer patient.

Things happened so fast, but at the same time took so long. I was overwhelmed, had about a thousand questions, and many worries, mostly about people around me and my completely unaware-of-the-situation parents.

I was diagnosed with Hodgkin’s Lymphoma (IIIA). Hodgkin’s lymphoma is cancer that originates from white blood cells. The disease spreads from one lymph node to the other, and can sometimes be accompanied with symptoms such as weight loss, night sweats, and swollen lymph nodes, none of which I really presented with, minus the lump on my neck. The exact causes of the disease are unknown, but luckily this type of cancer is highly curable with radiation therapy, chemotherapy, or stem cell transplantation.

As I am generally interested in medicine, prior to meeting my oncologist for the first time, I have already informed myself with the disease, prognosis, and forms of treatment. Though I understood what cancer was, I did not understand what kind of impact this hidden host would have on me, or my life.

While it is too early for me to speak about how the disease has changed me, I can certainly say that the current situation has helped me reconsider some things and focus more on the grand-scheme-of-life scenario. While I am very hopeful for the future, and all that it holds, I am nevertheless often frustrated with the present, and the many limitations that infringe upon what I used to call my normal routine.

But how does having cancer in your 20s really feel?

Honestly? It sucks.

I remember, as soon as I heard about Suleika Jaouad from one of my professors, I read almost her entire blog in just a couple of hours. It felt as though for the first time since my diagnosis I could truly relate to someone: “…having a life-threatening disease in your 20s carries a special set of psychological and social challenges. It defies our very definition of what ought to be. Youth and health are supposed to be synonymous. If only I could sue my body for breach of contract with the natural order of things.”

The thing – my health – that I took for granted for all these years is suddenly severely compromised, and this, I sometimes find hard to accept.

Here’s what’s it’s been like:

  • It’s like when cliché expressions and cheesy motivational quotes don’t sound so cheesy and cliché anymore. There is something so comforting about hearing “everything will be ok.”
  • It’s like when you have to learn new vocabulary to follow what doctors are saying on top of that problem set that is due the next day.
  • It’s like having people at the adult unit at Yale-Smilow Cancer Hospital ask you if you’re looking for your parents.
  • It’s like when you have to worry about your future kids while you still want to be one.
  • It’s like having a secret friend, invisible to others, whom you keep asking “If I do this, will I compromise my well-being?”
  • It’s like telling a friend you can’t hug them because they just got a cold and carry life-threatening germs to you
  • It’s like when your breakfast consists of almost as many different pills as ingredients.
  • It’s like feeling like you just ran a marathon after you just slept for 10 hours.
  • It’s like when it’s Halloween, but you don’t feel like dressing up because you feel like there already is a scary host by you every morning when you wake up.
  • It’s like going on a Tinder date without being able to drink or kiss and trying to convince the guy you’re normal and that everything is ok with you.
  • It’s like trying to explain to your friends that Ultra Music Festival is not an option for the Spring Break anymore.
  • It’s like missing the Masquerade Ball because wearing a mask is what you do on a regular basis anyways.
  • It’s like when you just want to have an ice cream, but you can’t have ice and you can’t have cream.