How long have you been living with GIST?
July 26th marked 9 years!!
What was your first thought when you were diagnosed with GIST?
“Why not me? What am I doing that makes me too busy to, I don’t know, fight cancer?”
What do you do?
I have taken my first steps into the adult world, where I am working at the Institute for Advanced Study in Princeton, New Jersey. I feel incredibly lucky every day to be able to work in such an encouraging and wonderful environment, and am learning a lot!
How are you doing now?
I think there are always two perspectives, a medical and a personal response to this question, and luckily for me, the two are currently aligned with one another. From a medical standpoint, my disease is relatively stable and while my tumors are growing, they are doing so at a slow and manageable rate. My incredible team at Memorial Sloan-Kettering and I are considering different treatment options, and I will most likely be starting treatment sometime in the near future. Fortunately, there are no imminent or immediate threats for us to deal with!
Personally, I am doing better and feel better than I ever have! Of course, my stomach will ache and the acid reflux will act up after a particularly heavy meal, and being anemic doesn’t always help with my busy lifestyle but it’s more than manageable. I’m able to maintain an active lifestyle, participate in endurance events, and practice yoga three times a week. On weekends, you can find me exploring New York City, biking along the Raritan Valley Canal, rocking out to some groovy tunes in Philadelphia, relaxing on the beach with a good read, or in my backyard playing with my new hula hoop (a new found obsession).
GIST is called a “rare” cancer, how do you feel about that term being applied to you?
In many ways, I think that GIST is the perfect cancer for me, if such a thing is possible. Indeed, we have found a strange sense of companionship in one another as the characteristics of GIST, its rarity and wild type mutation, are in tandem with my personality traits of being quirky, a free spirit, and passionate. I always found it ironic that I had been diagnosed with the “Wild-type” mutation because it captured the essence of me, someone who is wild at heart. So in many ways, I guess I was born to be “wild.”
The more somber truth is that GIST being a “rare” cancer means that there are not many protocols in place for how to properly treat this cancer. Whereas more conventional forms of cancer can follow along a more standardized route of chemotherapy, radiation, etc., the past nine years have been a journey characterized by trial and error. This is not only evident in the numerous clinical trials that I’ve participated in, but in the debates that occur over the proper imaging techniques, which range from MRIs to CT scans to PET scans and the best combination of the three. Put simply, there is not a lot of information out there about this rare cancer called GIST for the patient, and the cancer community at large, which has given me a lot more independence in shaping my personal understanding of what it means to be a “cancer patient.”
In doing so, I have realized that I am a “rare” cancer patient just as GIST is a “rare” cancer. I never lost my hair, or had to undergo traditional chemotherapy, but I have had three surgeries, three rounds of chemotherapy and have a fantastic scar on my stomach to prove it. So I guess for me, when the term “rare” is applied, I understand it to mean “unique” or “special” or “fabulous.” Yes, I am a unique, special, and fabulous cancer patient and GIST is a unique, special and fabulous (this one maybe not so much) cancer.
Tell me a little about your special characteristic.
This moment, the moment of me portrayed of me in my Rutgers red and black robes is a snapshot of the happy ending to a roller coaster of a college education. Most people go to school for four years, where they live in an university bubble of sitting in on their first 400 person lecture, pulling all nighters during finals, pledging for a sorority/fraternity, and scoring summer internships. Me? Not so much. For me, my freshman year ended with the devastating news that a tumor had collapsed on my diaphragm, which necessitated surgery and subsequent treatment. By sophomore year, I had to take a year off, after which I finally decided to transfer from NYU to an institution closer to home, Rutgers University. I was still undergoing treatment, and learning how to be a college student while simultaneously, trying to perfect the art of not throwing up from nausea in the aforementioned 400 person lecture. It wasn’t until my fourth year that I finally found my groove, and by my fifth and senior year, I proudly graduated with a hard-earned 3.91 GPA and a moment that I will never forget.
This moment is not just a moment, but a testament to the value of working hard, staying strong, and keeping a smile on your face the whole time. I remember someone once told me, “I’m not telling you that it’s going to be easy, I’m telling you it’s going to be worth it.” And college, for me, was certainly not easy. It was a grueling journey of self-discovery, and existential angst — all stirred and shaken up with your healthy dose of cancer, of course. There were countless times of doubt when I truly believed that I would never graduate, never achieve the 125 credits that I needed to enter into the next chapter of my life. Indeed, as he congratulated me on my accomplishment, my doctor said, “Hey, good job. Trust me. There were times when we all thought it wasn’t happening.”
So it is a moment that is so sweet, so perfect, and so full of excitement that it captures everything that I feel about my life right now: absolute joy to be right where I am, right here and in this moment.