Blog
At age 22, I was diagnosed with a rare sarcoma called aggressive angiomyxoma – say that 10 times fast. When my parents and I got the news we asked the doctor, “Is it cancer?” He responded, “That is a complicated question.” He said he had never seen it before and I needed to get to New York or Boston – there were only 250 reported cases in the world, ever.
My amazing nurses inspired me to become a nurse and now a doctor so that I can now share my experiences with my oncology patients and those dealing with similar circumstances. I did not expect to live and as a result I have an outlook on life that only sees the good, positive and joys in little things. I have an excitement about life that I would not have, had I not gone through a life or death situation. I love being able to participate in new activities and experience new things and see the sun rise each morning and dance in the rain simply because I am alive to do so. I never thought I would live to be an adult so each day is a new adventure and a journey to be the best version of myself that I can be so that I can share my life with those around me and especially my patients going through cancer and chemotherapy treatment now.
In the summer of 2015, I began to have pain in my left side. It felt like I may have cracked a rib. I let it go and continued my busy life as a wife and mom of three children. The pain continued and did not get any better. I noticed that I was becoming breathless climbing the stairs in our home and I was not sleeping well at night. I went in to the Doctor and had some blood work completed and all my numbers looked fine. My doctor did schedule a sleep study which came back stating I did not have sleep apnea, but they noticed I was not really sleeping either. A few more weeks went by and on Halloween, my husband put his arm around my side and squeezed and I remember the intense pain I felt. I knew I could not wait any longer. I went to Urgent Care on 11.1.15 and they did a chest X-ray. I immediately noticed that my chest X-ray did not look normal. They referred me to have a CT scan and determined I had some sort of a mass in my chest. This mass was causing the sleeplessness because of the pressure on my lungs.
I was originally diagnosed with Ewing's Sarcoma. The day I went in for my first round of chemotherapy my biopsy results that had been sent to NYC for further break down showed Synovial Sarcoma. At that time, I was considered stage III.
The "C" word is something no one wants to hear.
But these [sarcoma] survivors… made the most of their life-changing diagnoses.
For some, cancer was the wake-up call they needed to pursue their dreams, while for others it taught them the importance of self-care. The lessons they learned are pretty damn inspiring.
Going into this new year and new decade should feel exciting, but part of me feels some grief for the end of the last decade and the start of this one. This will be a decade of scans every 6 months, of wondering if my cancer is going to come back – and if it’s going to come back worse. Sarcoma likes to go to the lungs, so I’ll have MRIs on my leg and CT scans on my lungs for all of the 20s. If it doesn’t come back, then in the 30s I’ll be home free, but if it does…
The best piece of advice I internalized was from well before my diagnosis and it came from Zach Sobiech and Randy Pausch’s “Last Lecture”. Randy Pausch’s advice was “we cannot change the cards we are dealt, just how we play the hand”. That sentence is scribbled in Sharpie on a piece of paper on the fridge, along with “not today, sarcoma”, which I clearly stole from “Game of Thrones”. That’s also the name of my foundation which will donate 100% of its donations to the Wendy Walk: Not Today, Sarcoma.
