In honor of Brain Tumor Awareness Month, former Seattle Children’s patient Nina Garkavi shares her experience of battling a brain tumor as a young adult.
My name is Nina Garkavi and I am now 25 years old. I would have never thought I would be so closely connected to Seattle Children’s Hospital. My family moved to America when I was just 4 years old and I went through my childhood thankfully not needing any of the services that are provided by Seattle Children’s.
After finishing high school in Seattle, I moved to New York City for college. I scored a job on Fifth Avenue right after graduating in 2010 and began working in the big city. While it was all new and filled with busy days, I really felt like this was the start of my new journey and I was climbing up the big New York City ladder. I had to think about a lot of things – how would I afford living in the city? What train would I take to get to work? Where would I do laundry because there wasn’t a machine in the building? All those questions and more were filling up my mind but never did I think about cancer or what I would do if I got it. Not at 22. That was not something I was going to have to worry about…right? Wrong.
The day my life changed
Just as I was starting off my new life in the Big Apple, I went down to Miami, Fla., on what I thought was a spring vacation. Instead of being in the hotel room on the beach and soaking up the sun, I ended up in a very different room, the ICU at Mount Sinai Hospital, looking out to the sun and beach from afar as I was diagnosed with a brain tumor. I was experiencing excruciating headaches and went to the ER only as a result of non-stop nagging from my mom and boss to get “cleared to fly” as I was then headed back to New York.
Nothing about what then ensued was clear. In fact everything was quite a blur. A CT scan that my mom luckily advocated for showed that I had a brain mass, and then a consultation with the neurosurgeon indicated that I needed to undergo surgery immediately. Over the course of five weeks, I was trapped in the hospital, having two brain surgeries one week apart. I had no time to plan, no time to think, no time to weigh any options.
I was diagnosed with a pediatric brain tumor, Medulloblastoma Desmoplastic, which is most commonly diagnosed in young boys. I was not a little boy; I had no cancer history in my family. Nothing made any sense. But I had no time to think about that – there were just actions that had to be taken quickly as time was of the essence. I was referred to Seattle Children’s because I was from Seattle and my Florida team wanted me to be in the hands of pediatric experts to treat my special tumor. As soon as I was given the go-ahead, I was taken to Seattle Children’s to begin a cocktail of aggressive treatment (not exactly the cocktail I had in mind when I was in Miami). I had to leave my apartment, my job on Fifth Avenue that I just scored after graduating college and my friends behind.
Seattle Children’s becomes my home away from home
In an instant, I went from a mostly senior citizen filled hospital to one that was filled primarily with young children. I was a full time nanny in Manhattan and have been babysitting ever since I was old enough, so walking into Seattle Children’s was exceptionally difficult. I had cancer and I felt miserable. The young children had to have been even more miserable. During the first few months of treatment tears fell from my eyes and I went through boxes of tissues because it was just too hard for me to watch innocent, little children walking around with huge tumors, ports, feeding tubes and poles attached to them. Though it was hard to see the sick children, it was mostly difficult for me to look up and see the parents or caretakers, some of whom were just a few years older then I was.
Seattle Children’s became my home away from home, especially since treatments required me to spend most of my time there. The animal-filled hallways were comforting and always provided me with something to smile about. I would always tell myself, “If the giraffes were walking me down the hallway, I got this!” Snack cart Andy came by my room regularly with all sorts of yummy treats. The construction workers relocated a life-sized “Waldo” doll every day so that patients could look out of their windows and find him. Names of patients were painted on different pieces of cement as the building next door was being built. Kids could ride bicycles and tricycles through the hallways of the hospital – chemo poles in tow. I got to pick a gift on gift day – so I picked a ladybug pillow pet, which rides with me in my car now everywhere I go. The medical staff dressed up on holidays and there were always treats in the bin at the check-in desk.
Though I never felt well enough to attend all of the events that went on at the hospital, just knowing that there were scavenger hunts, art sessions and local team visitors made this painful experience a little bit more bearable. I got to watch fun movies like “Fantastic Mr. Fox” while getting an MRI. I had an excuse to drink my nutritious but awful shakes in a baby bottle, because everyone around was using them. Inpatient days always included something that we could laugh about – like the entire medical staff getting to peek at my butt when I’d have major side effects from my chemotherapy.
The day was filled with mixed emotions when I was told, “ok, you have to now be seen by the adult hospital.” No! I did not want to leave my animals, my icy cold pain-relieving spray before IVs, or “Finding Nemo” playing in the infusion room, none of it. But immediately I felt a sense of gratitude that through my hardest days, my rigorous treatment, and my absolutely terrible side effects – the entire team at Seattle Children’s was there for me.
I always say that I was very lucky to have been treated at Seattle Children’s. For the worst thing ever, it was the best place to be and I am forever grateful that if I had to get diagnosed, it was a form of pediatric cancer that allowed me to be treated there.
I recently toured the teen and young adult impatient unit that was being built as I underwent treatment and was completely blown away by all of its new features and offerings. It is designed uniquely to fill the needs of teens and young adults. I remember how it was to shower every single day – signing up in the hallway and waiting for the hour-long process to even get in – now young adults can shower in the comfort of their own rooms. It allows the adolescent and young adult (AYA) group to have the comfort of being around people that are close to them in age who are dealing with some of the same issues. When I was treated at Seattle Children’s there was only one other young adult that was finishing treatments. There was no one my age and no one who could have understood. This new wing provides a space in which the necessary support of other AYAs can be found and a community can be established to aid in getting through the difficult days and then transitioning into the healing process. It was truly incredible to see the actual building that I watched being built through my window.
Now I have been at an adult hospital for outpatient care since 2012; there is no movie or even music playing during my MRIs. There is definitely no freezing spray offered even when I have to get poked two or three times when they miss. But I just try to close my eyes, channel my inner child and pretend that I can still hear Dory from “Finding Nemo” saying, “just keep swimming,” and that’s exactly what I do.
The road ahead
I still get MRIs every three months and do many forms of rehab. The scans are time consuming and do stress me out, but they provide me with a huge sigh of relief and take the weight off of my shoulders for the next three months when the results come back clean. I started school again, to pursue a Masters in Public Administration and albeit the new daily challenges, I am trying to take it slowly, one class at a time. I am very active in the young adult survivorship world, both as a participant and now a volunteer mentor and staff member. I spend as many hours as I have available, volunteering, advocating, speaking at events and giving people a reason to smile. After barely making it across the finish line in 2011, I now have walked and jogged the Run of Hope and have an annual team called Angels and Heroes that I welcome anyone to join in.
I was once asked: “Do you have any advice or words of wisdom for other patients or young adults who may go through the same experience?”
Cancer simply put, sucks, for everyone involved – the patient, the caregivers, the family, the friends, the acquaintances. It makes every part of life challenging – often unbearable – and there are many things that are out of your control. However, there are many things that are in your control and that should be the only focus while you and your loved ones go through this journey together.
Although it is difficult for me to realize this sometimes, the only thing ever holding me back is myself – my expectations of myself at my age; my comparisons of myself before and after cancer. If I can tell you one thing – that would be to NEVER compare yourself to anyone, especially yourself. Appreciate where you are and what you have been through to get there.
I always recommend positivity. That may sound cliché, but if done correctly and in the way that I understand, then it will guarantee the most priceless benefits. It is an active and difficult way of living. Positivity does not mean that you always have to smile or that you are never allowed to cry. What it does mean is that you must welcome every day as it comes, not place blame or try to find an explanation but rather do what you can each moment to live fully. Deal with each struggle individually, otherwise problems can pile up and drown you like a wave. Just the simple act of wearing color also helped me to be positive each day because instead of looking in the mirror and seeing a hairless alien, I saw brightness and hope.
Dig deep, find your inner strength, look up and “just keep swimming.”
Nina was also recently featured in a KNKX story, “How One Woman Learned To Face Cancer From Her 3-Year-Old Hospital Roommate,” which you can read and listen to here.
Resources:
- Nina’s Updates – Nina’s own personal blog
- Ibrahim “I-Bizzle” shows off his crib in Seattle Children’s teen and young adult cancer unit
- Cancer and Blood Disorders Center
- Adolescent and Young Adult (AYA) Cancer Program
- Seattle Children’s Brain Tumor Clinic
- Gilda’s Club Seattle
- Seattle Children’s Cancer Survivor Program
- Fred Hutchinson Cancer Research Center Survivorship Program
- Patient voices: Stacy celebrates 10 years cancer free, reflects on being chemo Barbie
- Patient voices: Jake beats cancer, starts new life at college
