April 13, 2016 | By Nina Garkavi, as told to Rachel Tompa
I had just finished college in 2010 and scored a job in marketing on Fifth Avenue in New York City. I went to Miami in 2011 for what I thought was a regular vacation, a short break from work and the daily city stresses.
It quickly escalated to a vacation in the ICU, far from that regular vacation I had in mind.
I went to the ER to get cleared to fly because I had been having these severe headaches. They were excruciating. I couldn’t shake them out or feel them out, like when you rub your temples. This was something inside my brain. It was like someone was wringing out a towel and letting go. It would scrunch up my head and let go, scrunch up and let go. They were short but extremely painful. My whole world would stop for those few seconds.
My mom had come from Seattle to be on vacation with me. I went to the ER to give her peace of mind that my headaches were harmless because she was supposed to fly home to Seattle the next day. I went to the ER to get cleared to fly; I got just the opposite news — not to fly. Had my mom not advocated for and demanded that a CT scan be done, I don’t know where I’d be today.
After being told that I had a mass in my brain, it was all a crazy blur from there.
I went in through the ER of the Mount Sinai hospital in Miami and I didn’t leave the hospital for five weeks. I often refer to it as my five-week vacation in the “five-star Mount Sinai hospital.” I had two brain surgeries that were about a week apart – each one coincided with something. My first surgery was on my mom’s birthday, which must be an unimaginably awful way to spend your birthday. My second surgery happened to be on the same day that an episode of the Rachael Ray Show aired that I appeared in, on tape, as a volunteer model.
Amidst my journey there have been many different amazing coincidences and happenings that I have to believe have a greater meaning.
You don’t plan for these types of vacations. I definitely packed for a different trip when leaving New York, but like with any traveling adventure, you’re bound to forget things or pack incorrectly, right?
I’ll spare you the many side effects and challenges that I had to overcome through initial diagnosis. But none of it was easy.
In the end we decided that I would not go back to my life in New York and instead would go back to Seattle for treatment after the surgeries because I needed full-time care and lived close to one of the best hospitals for my diagnosis. I was diagnosed with a Medulloblastoma Desmoplastic tumor, a type of pediatric brain cancer, and my medical team recommended that a pediatric specialist treat me. I got transferred to Seattle Children’s, which I now know was the best place ever if you needed to be treated for the worst thing ever. I was one of the oldest patients there at the time. I was 22 when I got diagnosed. I’m 27 now.
I had to leave New York. I felt like I got ripped out. I did pretty much the opposite of what all my friends were doing. I had moved to New York at 17 by myself for college. But now at 22, after graduating and starting my first job, I was forced to go back to Seattle. I did not really have a choice. I had to leave my job, my apartment and my life in New York behind, carrying just a suitcase full of beachwear from my Miami vacation.
I can’t praise Seattle Children’s enough. I was blessed to be able to be treated there. I had to undergo very aggressive treatment, filled with various types of radiation and chemotherapy. My days all merged into one super long day that never seemed to be ending. If it wasn’t one pain, it was another side effect or another checkup that I had to go to.
And that’s how it was until 2012 when I finished treatment. I still go in for regular follow-ups.
Cancer is hard because it is never easy or convenient. It doesn’t just knock on your door before barging in. You cannot plan for it, or pack for it in my case. I had no history of cancer even within my extended family. On top of that, I was diagnosed with a cancer that’s usually diagnosed in 2-to-4-year-old boys. It really rocked my whole world – but also that of my family and friends.
I was doing everything on my own from a young age. And in one moment everything changed. I needed help from everyone. I couldn’t do anything by myself. I can’t really explain it, but my complete independence was taken away. For a year, I was watching everyone I knew live. Whatever that may mean, everyone was living in some sort of way and I was in a bed or at an appointment the whole time, while other people were doing everything for me.
When you leave treatment, everyone’s so happy, and you’re happy, you’re done, it’s great! Then you walk out the door and nothing is the same. Everything has changed.
Full processing of what you have just been through only begins when you start weaning off of all the medications and getting a bit of clarity. This is a new, never ending process for me and many other survivors.
I have various lasting effects, some minor but some that I face with unease daily. Some external and some that are invisible. And I am just 27 years old with lots of life to live and much left to give!
But I’ve had and keep having many blessings, which I cherish deeply. I entered the young adult survivorship community and I’ve attended a lot of great camps. Those programs are a great addition to conventional therapy and a way to connect with yourself and with others who have shared similar experiences. So much power has come out of those. I was not able to walk on the regular ground yet but I went to a camp in Maui where I learned to balance and stand up on a paddleboard. It’s a sense of power in your body and allows you to see what you can do despite the barriers. Beware though, camps are addicting!
In my eyes, there was no other choice: My family and the extensive support system I had enabled kept me going forward. They were the ones fighting for me.
These were the cards I was given — I had no choice but to keep playing.