Within a month after I moved to New York City in January 2014, I began feeling symptoms resembling a UTI. When I went to a MedFirst facility, the doctor recommended I find an OBGYN because the issue seemed to be derived from my reproductive system. After multiple visits, scans, ultrasounds and bloodwork, everything had been ruled out except endometriosis, and my doctor told me the best and only remaining course of action would be a surgery to find and remove the endometriosis. It would be my choice, but since birth control wasn’t curbing my cramps or my inability to digest anything without experiencing diarrhea, panic attacks and flushing, I went ahead and booked it for April 9.
On the day of the surgery, my mom flew in from Buffalo to take me to the hospital. Before I went to the OR, my doctor briefed me on the plan for the day and how a laparoscopy works. She also mentioned she suspected my appendix wouldn’t be in good shape, and received my consent to remove it if that was the case. When I woke up, she told me they have removed my appendix and a few additional endometriosis tumors on my ovaries and uterus. I felt nauseous, but internally happy it was over. I spent the next five days in the company of my mom, roommate Roxanne and close friend Maria, feeling tired and sore but ready to return to my dream job.
Around 6 a.m. on Monday, April 14, I called my mom (who had returned home a few days prior) to explain my severe nausea, flushing and panicky symptoms. After I spread the news to my doctor, she asked me to come into her office near Columbia University for a checkup to make sure I didn’t have an infection from the surgery. After ruling out the infection hours later, she told me that my lab results from the tumors weren’t what she thought. The one on my appendix was something she referred to as a metastatic stage 1 carcinoid tumor. To me, she could have been speaking Japanese. I had no idea what that was, other than she wanted me to see an oncologist who specialized in carcinoids to get checked and make sure I didn’t have any more.
There is no way to explain the feeling of finding out you had cancer but it’s gone but you might have more of it. Not to mention that I had no idea what it was other than it had been the reason for all of my symptoms.
Without much of a choice, I made plans to move home within a month, and began a very long string of tests and scans. I was pricked and prodded with IV needles, made to drink nasty tasting liquid this and liquid that to scan my insides and make sure nothing else was there. I even got to enjoy the thrill of my first ever colonoscopy and endoscopy. I became a patient at Roswell, joining a community of fighters who all had one goal – just to keep surviving.
On July 29, I was given the all clear from Roswell, which more so meant I was in remission, as in, enough time hadn’t yet passed for me to be deemed cancer-free. I still had plenty of visits scheduled with my oncologist, gastroenterologist, primary physician, OBGYN and mental health counselor, just to make sure everything was okay all-around. It wasn’t until the following June, when I went back to my oncologist for a six month follow-up, that I was given really good news: I didn’t have to come back.
Sure, if I start experiencing symptoms again, that calls for some worry, but for now, I can keep some of those $30 copays to myself. But it’s really not over. It never will be. I still see a counselor and take anxiety medication to help control my panic attacks and hormone levels. There are still many things I can’t eat or drink, from dairy products and fried foods to alcohol, because they might trigger me. I still have bad days, as the syndrome associated with carcinoid can be chronic, but thankfully, the good are starting to outweigh them.
Things are better for me now, so, why do this? Why bother raising money if I’m in the clear? Because I don’t think anyone deserves to feel the terror of not knowing what in the hell their diagnosis means.
Being told you have a disease that you’ve never heard of is not okay. Being told that the only real medication that can curb your debilitating symptoms costs $3,000/month with insurance is not good enough. There are fundraisers after fundraisers for more commonly diagnosed cancers. And that is important! Those fighters and survivors need recognition and funding for research to move toward a world without cancer.
Neuroendrocrine cancers and their treatments are fairly new to the medical world, as is cancer occurring in young adults. As it happens, I represent both categories, I was diagnosed at 21 with a cancer that isn’t typically found until it’s later, most damaging stages and/or the patient is at least 45 years old.
NET patients are the zebras of cancer patients. All of our symptoms and situations are different from anyone else’s, and the reason it is so hard to maintain a quality of life even as a carcinoid survivor is because there is such low funding for research to try and learn more about this disease and how it can be treated.
Please join me in my strides for stripes campaign to help raise money and, more importantly, awareness, for this very complicated cancer.