I have created this page in hopes that it will help not only myself but others who will be able to follow along with me step by step on this long journey ahead. I will try to update as much as possible so we are all on the same page. As many of you know, I have been diagnosed with Synovial Cell Sarcoma which is a rare type of cancer that affects soft-tissue. It has unfortunately metastasized to my neck, spine, lungs, liver and hips. To share some background of my story, on March 13th of this year I was diagnosed with a blood clot in my right thigh. I was on Spring Break in Florida with my family when I noticed some cramping in my calf that was irritating me. After flying home, I turned around the next day and drove down to Nashville with friends from school to end our Spring Break. When we were driving back I knew something wasn't right with my leg. It now had become so swollen in my calf and hurt to flex my foot upward. When we finally got back to school, my sweet boyfriend carted me off to the Emergency room after we had just driven 6 hours, only to sit in the emergency room for another 4 hours. I had an ultrasound done on my leg which revealed I did have a blood clot in my right leg and what the Ultrasound tech called a "venous aneurism". I wasn't phased by the diagnoses too much and was ready to go on my way after the Dr had looked over the ultrasound. The Dr. was not in the emergency room at the time so they forwarded him the pictures at home and he said "She doesn't need an MRI, she should be fine she can go home." Little did I know, if I would have just had that MRI, I probably would not be where I am today.
Fast forward a month later of being on Lovenox injections twice a day in my stomach and Warfarin pills once a day, surely I thought I would see some relief of my symptoms but I did not. I still had cramping and swelling in my calf and even my shin was numb. I scheduled an appointment with the Vein Specialists who had looked over my Ultrasound that night in the Emergency room. I told him of my symptoms and asked "At 22, why would I have a blood clot? I know I traveled but it's not like this was my first time traveling." He did not seem to have any answer besides suggesting to wear a compression sock to help with the swelling. When I asked him about the "veinous aneurism" diagnosis he said, "The ultrasound tech has been writing that incorrectly", and that it was nothing to worry about. Little did he know. I took his advice and bought an extremely attractive compression sock just like all the other 80 year old women I know who wear them and will admit the swelling did go down. However, the cramping was still unbearable. Walking to class would hurt so bad I would have to stop and take breaks in order to not feel like my calf was going to snap out of my skin. This continued for quite some time and like the Dr. said, just wear your compression sock! I also was given Warfarin (blood thinner) to take once a day for 6 months and then would re-check the blood clot in July. I had my blood INR levels checked once a week which indicated whether my blood was too thick or too thin on the Warfarin and they could adjust the dosage from those results. A therapeutic range for me was between 2.0-3.0. If the result was closer to 3, then that means my blood was "too thin" or can not coagulate or clot easily. On the flip side, if it was closer to 2 or less then my blood was "too thick" meaning the clot could build up since it was stickier. It was very important to monitor these levels and still is important as this journey continues.
Fast forward to mid June of this year and I started to notice a rather large lump in my thigh and terrible lower back pain. The lump was hard, immovable, and was pressing up against my quadricep and was giving me really bad knee pain. Since I moved home for the summer, I went back to my Dr here in Rockford who is very hardworking and definitely a problem solver. When he noticed the lump in my leg he immediately ordered an MRI of my leg and was eager to figure out the reasoning of this lump. Since then I have had an MRI of my leg, chest CT scan, full body PET scan, Biopsy on my leg and hip, and an MRI on my brain. With the results of all the tests, I have been diagnosed with Sarcoma. Also, the Chest CT scan I had done did show the cancer has metastasized to my lungs, liver, hips, neck and vertebral column. Sarcoma is soft-tissue cancer that most commonly appears in extremities, abdomen or even the neck and head. It is one of the most rare types of cancer and the subtype of Sarcoma that I have is Synovial Cell Sarcoma. Synovial Cell Sarcoma affects about 800 people a year. I just so happen to be one of the lucky ones, yet I can't win the lottery to save my life. My Dr here also revealed that the blood clot, was most likely secondary to the cancer. That means, that if I would have just had that MRI done the night I was in the Emergency room, instead of the Dr just sending me home saying I was fine, I would not be in the situation I am in today. We have lost 5 months of treatment and have let the cancer spread and get worse because we had no idea what was going on inside. However, I can't go back in time and change that but I also can't help but resent someone for making that decision to send me home when it never hurts to double check. Especially, when it is a red flag to be so young and develop a blood clot. After asking numerous Dr's and nurses in Bloomington why I would develop one so young they never once had an answer for me.
With that being said, the only way to go from here is forward. I've learned a lot in just the few short weeks since being diagnosed. Most importantly I have been shown that life is incredibly short. I know we have heard it time and time again but it is inevitable. We are not guaranteed a certain amount of time on this Earth. Time on Earth is to be spent with the ones we love, doing the things we love. God has a plan for every child of His and mine is just a tad more difficult but it's nothing I can not overcome. Thanks to friends and family like you, I can feel the love and support from each and everyone of you which keeps me motivated every day. Xo