I’ve never been good with needles. Before I was diagnosed with a rare cancer last summer, I couldn’t have blood drawn without passing out or throwing up; I couldn’t even get so much as an annual flu shot without needing my sister in the room feeding me a bag of Sour Patch Kids to keep me from fainting. I’m not sure where this fear came from, or why my reaction to something other people seemed to view as routine was always so extreme. It was just another quirk of being me, this irrational phobia of mine. Last June, when I found myself laying in bed, gasping for breath, mumbling “uh uh uh” — literally just repeating that sound — to somehow push through the pain radiating from my lower abdomen into my chest, not even then was I considering a trip to the hospital. No thanks. There would be needles at the hospital.
Lucky for me, I had a close friend (one who would eventually become a boyfriend) to talk me through this delirium. Something was seriously wrong. And so after much convincing, we went to the emergency room together.
It wasn’t cancer at first. No, at first it was a ruptured ovarian cyst, one that required immediate surgery to stop the hemorrhaging of blood into my abdomen. The doctors told me there would be an oncologist in the room during surgery to assess how the cyst looked, but I was too young to have cancer, nobody was worried. When I woke up, the first thing I asked was, “Is it cancer?” And the doctors assured me once more that it wasn’t. But by the second week of July, I was sitting in an oncologist’s office at Memorial Sloan Kettering Cancer Center, waiting to hear my treatment plan for what turned out to be an ovarian germ cell tumor, a very rare type of ovarian cancer that originates in the egg cell. The first thing my brother said to me after being diagnosed was “don’t Google anything.” So I didn’t, but I learned something about my cancer right away. Germ cell tumors account for less than 2% of ovarian cancers overall. But when they do strike they tend to occur in young women like me.
To say the least, this was not the plan I had for myself in 2017. My 24th year was supposed to be a year of self-discovery. I was newly single when that pain in my abdomen was just a twinge that would come and go. I ignored it for months, this little hint, because I was busy living. I’d thrown myself into my work as a tax accountant at PwC, taking on more projects, and always raising my hand to help my co-workers. In May, I found out I was being promoted. I was ecstatic to be recognized at work, and that wasn’t even the best part about my life at the time. I was also leaning into the people I cared most about, discovering new joys in the simplest of pleasures: grabbing margaritas with my friends after work, and spending as much time as possible with my niece.
The experience of cancer treatment is a lot like childbirth or Burning Man, which is to say it’s not something you can really explain to someone.
Things were great, in other words. Better than ever. I said so many times that “2017 was going to be my year.” And then came that ruptured ovarian cyst that turned out to be cancer.
It’s cliché now to say that a cancer diagnosis has a way of changing everything, but that doesn’t make it any less true. My oncologist never discounted the seriousness of the diagnosis and was great at validating my fears and worries. She referred to it all as a huge inconvenience, one that would require a lot of effort (mentally, physically, and emotionally) to get through, but one that would be worth it. I would first need surgery to remove my right ovary and fallopian tube, followed by aggressive chemotherapy. She leveled with me that treatment would be very difficult on my mind and body, but that my tumor was likely to be responsive. (Phew.)
What she didn’t tell me was what, exactly, she meant by “aggressive” — mostly because how could she? The experience of cancer treatment is a lot like childbirth or Burning Man, which is to say it’s not something you can really explain to someone beforehand. We’ve all seen the movies, or worse, watched loved ones go through cancer treatment. My biggest fear was I’d go into chemotherapy one person, and come out as someone else. That I’d be stripped of every vestige of myself, mentally and physically.
But luckily for me, the first thing to go was my fear of needles and blood-work. After four grueling weeks of self-injections for an egg-freeze (made easier by my now-boyfriend Nick, who gave me every single injection in my belly), my irrational fear of needles started to fade. Right before I started treatment, I was asked to participate in a study called Make-an-Impact, which is a research project at Memorial Sloan Kettering that collects genomic data from patients so doctors and scientists can learn more about germ cell tumors, and other specific types of rare cancers. Participating in this study required a blood test, and with my newfound bravery, I graciously accepted the opportunity to help make a difference at the place that was saving my life.
The next thing to go was my hair. This was what I was most afraid of: The idea that one day during the 9 weeks of chemotherapy, I would look into the mirror and not be able to recognize the person looking back at me. Before I was diagnosed, I had long, jet black hair. It was the thing that first drew Nick to me, and something I’ve always loved about myself. My black hair had always been a defining staple of mine, ever since I was 13 and got my first grey and I started dyeing it.
I started chemotherapy just a week after my second surgery. The first week, I got up early every weekday and headed to MSK to have the drugs administered via a port in my chest that’d been placed during my surgery. Every day I asked myself: Would today be the day my hair starts falling out? I had this strange feeling that the minute the chemo went into my port my hair was going to start falling out. I obsessively ran my fingers through it, even when the drugs started to take hold and I had “bigger” problems: nausea, body aches, and total loss of appetite.
During my second week of chemo, I knew my days with long black hair were coming to an end. My scalp started tingling; it felt like I had taken my hair out of a really tight pony-tail, but that pulling feeling wouldn’t go away. And then the day finally came: I woke up to find my pillow covered in black hair. Now when I ran my fingers through my hair, instead of seeing one or two hairs come out into my fingers, I’d have a handful. It was during one of those moments I realized I couldn’t watch it fall out anymore, strand by strand. “Do you have a buzzer?” I texted my brother.
Within the next few hours, my brother had delivered his buzzer and I let Nick shave my head. The first time I looked in the mirror with my buzz cut, the fear immediately melted away. I looked very different, yes, but the core of who I am was still there. In fact, it was only more apparent. I looked pretty bad-ass.
The last thing I lost was probably the hardest. As the weeks of chemotherapy wore on, I could barely get out of bed, and most days I simply didn’t. I was supposed to have 9 brutal weeks of chemo, but ended up having to stop at 7 because of the effects the drugs were having on my lungs. By the end, the fatigue ran so deep, like every single one of my body’s cells was operating in slow motion, that I felt transformed. My eyelids felt like they had 40-pound weights dragging them down, while my nausea and anxiety kept me from sleeping. I had lost all my previous drive and vitality, the buzz cut I rocked before continued to thin out, the bags under my eyes darkened. By this point, I saw cancer when I looked in the mirror, not myself. I was the personification of cancer, no longer a full person, and I was horrified and depressed. I was beaten down in all ways I expected, mentally, physically, and emotionally, just as I feared.
But instead of being trapped by this, I found some peace in my rock bottom. One way I found joy was starting a Cycle for Survival team. Cycle for Survival holds indoor team cycling events in January, February and March. Every single dollar raised goes directly to rare cancer research led by Memorial Sloan Kettering. The date of my ride was 6 months out, and for me the idea of having something that far into the future to look forward to gave me hope and excitement during my treatment and recovery. I spent days I was well enough focused on raising money for my team, one thing I felt I had complete control over. I felt so proud every time another donation came through – especially because the Make-an-Impact research project I participated in is funded by Cycle for Survival, so I know the funding will truly help others like me in the future.
Once chemo was over, the only place to go from rock bottom was up. So one day a few weeks after my last chemo treatment, I stepped onto the treadmill. The first day, I set the speed to 2.0 miles and the incline to zero. After 40 minutes, I’d gone a mile and half. I thought about the days when I could run 4 or 5 miles in that amount of time, and it all paled in comparison to how proud I was of getting through this first workout, huffing and puffing in my headscarf.
Last week marked almost 5 months since I finished treatment, and six months since creating my Cycle for Survival team. And the day was finally here: I was excited to finally ride alongside 100 of my family and friends to raise much-needed money for rare cancer research. I set a goal for myself to cycle for at least half of the ride with my teammates. I thought if I could put in 25 minutes of effort, that’d be enough to make me proud. But as soon as I got on the bike, with the incredible energy in that room and the support of so many people, I knew I could make it through anything. I rode the entire 50 minutes, finished the ride dripping in sweat, my curly short hair frizzy and grey, more proud of myself than I had ever been.
In the end, my big fear is pretty much exactly what happened — I came out of this experience completely changed — but I learned that being changed by something, even something scary or harrowing, isn’t always a “bad” thing. While it’s true that by the end of my treatment, I was beat up, I was also transformed. I had learned so much about myself and how strong I am, that love and family are most important, and that light always finds its way of peeking through. In the end, 2017 really was a year of self-discovery.
But with all that being said: I’m so happy to say I’m ready to start again. 2018 really will be my year.
As told to Amelia Harnish