Catalina- The Discovery of a New Normal

It was the end of summer of the year 2008. I was traveling on my 15th trip around the sun when one day in my modern dance class, in the middle of a pirouette, I collapsed. I had no idea how I ended up on the cool gray dance floor, but I knew I could not get back up. A swarm of leotards and tights surrounded me trying to help me onto my feet again but I was frozen. The sound of the pop my femur made echoed in my ears and the lines of the room began to fuzz. Before I knew it I was hooked up to morphine and waving goodbye to my dance friends as the paramedics put me into the ambulance. I had driven down the canyon from Park City to Salt Lake a million times but this time I was introduced to every crack and bump in the highway. Each bump jolted a blinding, lightning pain through my leg. They say that when you experience physical trauma, your body helps you by shooting adrenaline through your system. What they don't tell you is that the adrenaline fades after a certain amount of time. After a grueling night at the children's hospital I had a small operation in the morning to get a biopsy. I had in fact snapped my femur in half! For those of you that don't know, the femur is the largest bone in your body and it does not break easily. The fact that the strongest bone in my body was snapped in half by a dainty pirouette was extremely suspicious. Before we even got any results back, we were introduced to a woman who I would later call my oncologist. I remember my mom being super defensive and rude to her because she had the 'audacity' to talk to us when we didn't even know for sure yet! 

I spent the next year in and out of the hospital trying to kill the impossible beast called cancer. I had a rare bone cancer called Ewing's Sarcoma and the chemo that came with it was indescribable. At the halfway point between chemo's I had a 14 hour surgery to remove my femur and replace it with a titanium compress. I remember waking up from surgery and immediately asking my dad to play 'Be OK' by Ingrid Michaelson. I could go into the nitty gritty about chemo and all of my hospital stays but that would be considered a book, not a blog post. I finished my 16 rounds of chemotherapy and I started to walk with a cane. I went back to school and continued to be a teenager the best way I knew how. Everything was different and I hated the way I lost some of my closest friends. I could no longer relate to the struggles of the every day high schooler. 

2 days after the return from my Make-A-Wish trip to New York Fashion Week, I was diagnosed with Acute Myeloid Leukemia. I was admitted to the ICS unit at Primary Children's Hospital that same day, and stayed there for the following month. The doctors informed me that my new diagnosis was due to the overdose of chemotherapy from my Ewings treatment. (Yes that can happen! And its actually pretty common because there is not enough research for childhood cancers.) People think chemo is a medicine because it kills cancer cells. They forget that more than anything it is a poison that kills ALL of your cells. I spent the next 3 months in the hospital preparing for the only option I had left, a bone marrow transplant. While I continued to process extreme chemo treatments, the search for my bone marrow donor began. I was basically in quarantine until I could have my transplant. We eventually found my match through Be The Match and that's when I took my final chemo treatment. The round of chemo they give before a BMT is so strong that it will kill you if you do not have a transplant. That final round is intended to kill anything and everything to make room for the new cells. It is timed so perfectly that they don't harvest the donor's bone marrow until the chemo has been administered and you are in a type of 'remission'. My new marrow cells were from a wonderful donor in Germany. The day of my transplant someone came directly off of a flight from Germany to the hospital and we hooked up the transfusion! While this was an incredible experience and chemo was so rough, nothing I had ever gone through compared to what was coming next. (I feel like I am in one of those info-mercials, "BUT WAIT! THERE'S MORE!) 

Here is the part of my story that connects the dots for why I am disabled, so bare with me! As you have read so far, the only physical impairment I had until this part of the story had been my femur, and I was already using a cane. After my bone marrow transplant I hit perhaps the most intense part of my recovery. I had a few near death experiences and my body was fighting so hard that it was fighting itself. I had what is called, Graph Versus Host Disease or GVHD/GVH. This is when the new organ and the body see each other as foreign and then try to kill each other off. In order to stop my body from attacking my bone marrow, I had to suppress it with immunosuppressants. One of those suppressants was a steroid called Prednisone. I was on extremely high doses of prednisone for a very long time. While that was absolutely necessary for my transplant to succeed, it also had a negative affect. The prednisone had began to eat away at my bones. I treated my GVH two different times and both were extremely aggressive treatments. By the time I had been able to stop the prednisone, my bone density was less than 50% of the average density of someone my age. My skeleton was very fragile and I had managed to fracture some bones a few different times. This also led my joints to weaken and start to collapse. (A collapsed joint basically means that the bone in the joint is broken or crushed and no longer works). I eventually had to replace my "good" knee (the knee that was not attached to my new titanium femur). Due to complications and infection that knee has been replaced a whopping THREE TIMES and was at risk of amputation. (still got the knee! she's kickin' it these days) I have had both hips replaced, my right ankle fused, and to this day both of my shoulders are collapsed and need to be replaced. I am waiting until the pain is no longer bearable before I get new ones. A double shoulder replacement isn't really fitting into my schedule these days..  

In 2017 I was finally able to detach myself from the incredible hospitals in Utah and I made a life decision that my soul craved. I packed up my belongings and I moved to one of the most beautiful cities in the U.S. I have been living in Portland Oregon ever since and I am an officially independent woman. I know it won't always be this way, and I have many more surgeries to come but for now this is my normal and I am beyond thankful for every new day that I get to live through. 

-Cata