Nine years. nine long years. I've been living with my desmoid tumor for nine years now. It has been a struggle every single day. I am tired trying to be positive. I am tired trying to be strong. Most of all, I'm tired of hoping.
Let me start from the beginning and share my story. Nine years ago.. October 18, 2002.. It was supposed to be a fun night out with my friends as we went to a haunted house. Being caught up in the spur of the moment, we all made a decision that would ultimately change what was supposed to happen that night forever. We were supposed to go to McDonalds to satisfy our hunger and then go home to be under our warm covers on that cold October night. Unfortunately, life doesn't work that way. What we thought was supposed to happen doesn't always happen. My entire life flashed right before my eyes when the jeep I was riding in almost toppled over. The unimaginable didn’t happen as the car didn’t topple over but I was the unfortunate one. I can still remember vividly how I felt the moment an overwhelming amount of weight crushed my leg and at the moment I signed, “broken. My leg is broken.” An ambulance came and took me to the hospital where I learned what would come to be my worst nightmare as a teenage girl in high school. I had broken my leg severely and the doctor told me I wouldn’t be able to play sports for the remainder of my junior year. Being the athlete I am, I was absolutely devastated. Considering the fact homecoming was coming up, I chose to have a bright orange cast (which conquered my left leg entirely). I had to have the cast on for three months. When I finally recovered completely from my broken leg, I thought I conquered the worst and that my battle was over. I was floating on the clouds as I jumped into my senior year. I couldn’t be any happier that I was up and walking and that I could play sports again. I was a senior, on the top of the world, and about to jump into whatever life had in store for me. I had put what i thought would be the worst thing that ever happened to me BEHIND me. Little did I know it was just the beginning. Little did i know that the car accident would forever change my life.
Last week, i found out a second tumor has grown adjacent to my first one.
My doctor decided to stop the chemotherapy treatments because it was obviously not working. I was thrilled because i hated how chemo made me feel but deep down inside, I knew it wasn't good news at all. I went to my specialist in Baltimore and learned news I feared the most. I will have to have yet another surgery to remove my second tumor AND i will also have to be back on chemotherapy as soon as possible, with stronger dosages this time. There’s also a high possibility that a third tumor has grown... I am beginning to believe that I will be dealing with this for the rest of my life. I am such an active person and I'm terrified to death of losing my leg. And there- I crashed. I completely crashed. For the first time since I broke my leg nine years ago.
I’m being open about this for the first time. I have been hiding behind my feelings for so long, thinking I can deal with this on my own. Truth be told, I can’t. I’m tired of fighting this horrible disease. I’m tired of trying to be positive. I’m tired of being strong. Most of all, I’m tired of hoping.
And being disappointed every single time.
So here I am. I’ll continue updating and living life on a positive note. I am now unsure whether to follow my doctors’ orders and continue with chemotherapy, or to undergo yet another surgery to remove my first tumor as well as my second, or to let it be. Time is ticking every single second, and time is everything i don't have. The road of life twists and turns, and two directions are never the same. Yet our lessons come from the journey, not the destination. I cannot wait until the day I arrive at my destination (the day I will be tumor free) for it will be the best day of my life. However, I have no choice but to keep going on this journey I was given. With that being said, I’m asking for nothing more from any of you but to join me on
And being disappointed every single time.
Let me start from the beginning and share my story. Nine years ago.. October 18, 2002.. It was supposed to be a fun night out with my friends as we went to a haunted house. Being caught up in the spur of the moment, we all made a decision that would ultimately change what was supposed to happen that night forever. We were supposed to go to McDonalds to satisfy our hunger and then go home to be under our warm covers on that cold October night. Unfortunately, life doesn't work that way. What we thought was supposed to happen doesn't always happen. My entire life flashed right before my eyes when the jeep I was riding in almost toppled over. The unimaginable didn’t happen as the car didn’t topple over but I was the unfortunate one. I can still remember vividly how I felt the moment an overwhelming amount of weight crushed my leg and at the moment I signed, “broken. My leg is broken.” An ambulance came and took me to the hospital where I learned what would come to be my worst nightmare as a teenage girl in high school. I had broken my leg severely and the doctor told me I wouldn’t be able to play sports for the remainder of my junior year. Being the athlete I am, I was absolutely devastated. Considering the fact homecoming was coming up, I chose to have a bright orange cast (which conquered my left leg entirely). I had to have the cast on for three months. When I finally recovered completely from my broken leg, I thought I conquered the worst and that my battle was over. I was floating on the clouds as I jumped into my senior year. I couldn’t be any happier that I was up and walking and that I could play sports again. I was a senior, on the top of the world, and about to jump into whatever life had in store for me. I had put what i thought would be the worst thing that ever happened to me BEHIND me. Little did I know it was just the beginning. Little did i know that the car accident would forever change my life.
A tissue grew around the location where I broke my leg. I thought nothing of it and that it was probably associated with my bone being broken. However, five years later it grew to be so big to the point where it became more and more painful. I was in college so i was too wrapped up in living my college life to go and get it checked. I finally did so my senior year in college. I found out I had desmoid tumor and that I will have to have a surgery to get it removed. Desmoid tumor? What was it? I had no idea. I was just relieved to find it was benign and that it wasn’t cancer. I told myself I would get through it and that my battle would then be over.
(you can see the bump on my left leg- the tumor was approximately the size of a golf ball)
I had my first surgery, and it was the most painful procedure I’ve ever had to go through. It took me three months to recover since my muscles were cut open. Tears were shed, the pain was unbearable, and I told myself I would never take walking for granted ever again. When i finally recovered, it never occurred to me that it would come back.
But, it did. I had my second surgery the following year. The tumor was smaller so the surgical procedure was a lot less painful. My confidence in the fact that it wouldn’t grow back diminished. Needless to say, i wasn’t surprised when it came back for the third time. My doctor brought up the idea of chemotherapy but i was so unbelievably scared of the term, chemotherapy. I refused and opted to have surgery instead and had my third surgery the following year. The tumor grew back immediately. The thought of having to undergo chemotherapy made my stomach churn and it was unbearable at times.. more often than not. I never thought, out of all people, i would have to have chemotherapy instilled in my body especially at the tender age of twenty-four. It was definitely a dark time in my life but the support i received from my friends and family kept me going.
I went through yet another surgical procedure and had a port installed in my chest. I started my first dose of chemotherapy last May and I was to receive a dosage every week for a year. I had to cancel my plans of backpacking across Southeast Asia. I was completely stuck at home. I went through a lot of self-pity, wondering why me? But I always told myself- I was given this life because i AM strong enough to live it. I endured through the entire summer of juggling living the summer life- going out and enjoying the sunshine as well as going to the hospital every single week to receive my dose of chemotherapy. After every session, I would go home, jump in my covers, and watch season dvds all day long. But then next day, I would be back to normal so it was bearable. Going to the hospital so often also gave me an entirely different insight on life. People should never take what they have for granted, nor the lives they live. There are only so many people who suffer on a daily basis. By saying people, I also mean kids. I’ve seen kids younger than me at the hospital, completely bald with a larger than life smile plastered on their faces. Their optimistic attitude blew me away. What I have isn't something I should complain about. What I have IS minimal compared to only so many people all over the world with life-threatening diagnoses. I learned the hard way not to complain so much, and to “grin and bear it.” But it was a still a struggle for me. The struggle was between my feelings and me. It was like a ping pong ball in a ping pong game to put it into perspective. There were times when I truly felt I shouldn’t complain because there are so many people worse off than I am, but also times when I felt alone and different than the rest of the people who didn’t have to deal with the things I did.
(summer of 2011 @ OCEAN CiTY, MARYLAND with my beautiful girlfriends)
However, the concept that I was to have a year of weekly treatments kept me going. I had a calendar and I crossed every week after another as they came by, firmly believing that I would be entirely done fighting this horrible disease this May 2012. Summer came and went faster than the blink of an eye.
August 30th was here. I went into my second year of graduate school with a strong determination that I will succeed. I will be able to juggle school, internship/practicum, and going to the hospital every single week. I received my chemotherapy treatments at the Washington Hospital Center. And the doctors/nurses there were NOT friendly. It was depressing to go there week after week. I didn't suffer many side effects from chemotherapy. My hair just got a bit thinner, and I felt a bit more tired than usual. I had tremendous support from my friends and siblings as well. They took turns taking me to the hospital and again- that kept me going.
I thought that with chemotherapy for a year, i'll finally be done with my battle for good.. forever. Little did i know that i was going to be very wrong.
Last week, i found out a second tumor has grown adjacent to my first one.
My doctor decided to stop the chemotherapy treatments because it was obviously not working. I was thrilled because i hated how chemo made me feel but deep down inside, I knew it wasn't good news at all. I went to my specialist in Baltimore and learned news I feared the most. I will have to have yet another surgery to remove my second tumor AND i will also have to be back on chemotherapy as soon as possible, with stronger dosages this time. There’s also a high possibility that a third tumor has grown... I am beginning to believe that I will be dealing with this for the rest of my life. I am such an active person and I'm terrified to death of losing my leg. And there- I crashed. I completely crashed. For the first time since I broke my leg nine years ago.
I’m being open about this for the first time. I have been hiding behind my feelings for so long, thinking I can deal with this on my own. Truth be told, I can’t. I’m tired of fighting this horrible disease. I’m tired of trying to be positive. I’m tired of being strong. Most of all, I’m tired of hoping.
And being disappointed every single time.
So here I am. I’ll continue updating and living life on a positive note. I am now unsure whether to follow my doctors’ orders and continue with chemotherapy, or to undergo yet another surgery to remove my first tumor as well as my second, or to let it be. Time is ticking every single second, and time is everything i don't have. The road of life twists and turns, and two directions are never the same. Yet our lessons come from the journey, not the destination. I cannot wait until the day I arrive at my destination (the day I will be tumor free) for it will be the best day of my life. However, I have no choice but to keep going on this journey I was given. With that being said, I’m asking for nothing more from any of you but to join me on
my journey towards recovery.
