Yes. You read right. I'm finally tumor free for the first time in eleven years. That day was indeed one of the best days of my life. I was on cloud nine. I could NOT believe it. I could NOT hold back tears. Those tears symbolized all those years of struggle.. all those times i felt frustrated.. all those times i felt hope was lost.. all those times i wondered why me.. all those times my parents held my hand and cried when i went into the operation room.. all those times chemotherapy was instilled in my port.. all those times i had to give up in order to receive radiation treatments.. all those trips to the hospital.. all the feelings i felt........

 ALL THIS and THAT lay in my teardrops that silently fell down my cheeks. I'm tumor free. FINALLY.

I'm sitting here.. wondering how I will ever put how i feel into words. I have come to the realization that i cant. and i never will. however, i can share my story with you all. there IS a light at the end of the tunnel. i'm here to tell you people who are fighting desmoid tumors and feeling all hope is lost.. dont ever give up hope and no matter how hard it is- always look up with a smile. life is indeed too short to be anything but happy. that's definitely one thing i learned from this journey. i know i was given this tough obstacle because i was strong enough to overcome it. i am strong enough.. and i will always be strong enough.

I mentioned this before in my previous blog but i'm going to repeat it- i know i will always deal with this for the rest of my life. i may be tumor free now but i still deal with the pain shooting up my leg every single morning. i still deal with the fear of the tumors coming back. i still feel my leg regularly with hopes of not finding a bump.. the tumors may come back.. they may not.. but there is not much i can do about it except be positive.

I also learned that after finding out i was tumor free, i felt i wanted to give back more than ever. before, i was too focused on me, myself, my feelings, my battle, my frustrations, my journey... but now i find myself wanting to give back to the research, to help others and helping myself in the process. so, i decided to start a booster campaign and i was able to give a lot of money to the foundation research. im not done here. i want to run the 5k in philadelphia this fall. i want to do MORE. i want to make a DIFFERENCE.

I know most if not all of you wont understand this since I'm deaf and I communicate in American Sign Language. The transcript of what i said is below-

glimpse of my story- read below. I don't want to see other people go through what I went through. No my tumors haven't come back and I hope they never will. Thank you for your continuous support. ILY

(by saying read below, I typed this on other social media- instagram)

Desmoid tumors are tumors that arise from cells called fibroblasts and among one of the rarest tumors in the world. When fibroblast cells undergo mutations they can become cancerous and become desmoid tumors. They can be life threatening when they compress vital organs. They also play a critical role in wound healing. After I recovered from my broken leg, the tumors continued to grow thinking it was fixing my leg when it was already fixed.
My tumors were located in my left leg and I have went through countless of X-RAYS, MRIs, CT scans, bone scans, surgeries, rounds of chemo, and radiation treatments. Last dec, for the first time in eleven years- the scans finally showed no growth. I am a part of a forum for people suffering from Desmoid Tumors. Everyday, I read about their stories, their struggles, their battles, their sufferings, their frustrations, and most of all their fear.
I have accepted I will be dealing with this for the rest of my life because even if I am tumor free now, there will always be a possibility of them growing back. Nobody deserves to go through what i went through and nobody deserves to go through what people diagnosed with desmoid tumors go through. We dont know what will work... surgery? radiation? many many kinds of chemotherapy? and the uncertainty continues to unfold... until a cure is found.
I truly want to play a part in helping the researchers find a cure. At first, I thought id inform some people that they could help me support the research by ordering a shirt but I have been overwhelmed by the amount of people who also want to help- you guys are beyond amazing. and everyday i find myself feeling lucky to have such amazing people in my life. you guys are the reason why im standing as strong as i feel today.
all of the proceedings will go to the desmoid tumor research foundation. last but not least, TOUGH TIMES TRULY DO NOT LAST, TOUGH PEOPLE DO :)
___________________________________________________________

and I don't want to stop here. I won't stop here. until, together, we find a cure. 

Hope whispers, "one more time......"

When someone asks you, “How are you?”…… Saying-

“I’m fine” is one of, if not THE most commonly used lie in the English dictionary.

to put it into perspective- every lie is two lies… 

one is the lie we tell others and the other lie is the lie we tell ourselves to justify our lie…..

but every time someone asks me, “How are you?” I would usually reply, “I’m fine,” with a smile. I really did feel okay because I knew, at that very moment, there was somebody who cared.

However, I have been having sleepless nights where I would lay awake with countless of thoughts swirling around in my head. Am I really okay? How much patience do I have left? How long is my patience going to be tested? How long will my strength in this thing people happen to call life last? Why do I sometimes find myself feeling as if I’m hanging on a string? I cant imagine asking for more support other than what I have been receiving from my family and friends but there are still those sleepless nights.. Those sleepless nights where I would lie alone and engage into a deep fledged battle with my thoughts......
There are some nights when my mind would win and I would tell myself that I think too much and that I AM okay. But there are also nights when my heart would tell my mind to stop thinking you’re strong when you really feel you’re falling apart…

Oh, only if you knew the battle between my feelings and thoughts ;)

                                   I used to always get through things by this quote-

"When times get bad, always remember that there is someone worse off than you.”

Comparing myself to others worse off than I am may make me feel better temporarily but what about when people compare themselves to me? I’ve come to the realization that nobody will ever completely understand what I’m going through…

this is MY battle… MY body… MY tumors… MY fears… MY thoughts… MY LIFE.

For quite a long while, I have found myself struggling to grasp my thoughts as they slip through my mind, then through the gaps between my fingers...falling even further from my reach. As much as I wanted to pour my thoughts & feelings through my hands and into words about everything I’ve been through in the last few months (or even eleven years for that matter) I couldn’t for a long time... A writer’s block at its finest, indeed. The inspiration to write comes when you least expect it. At least that is usually the case for me.

Today, I had a random thought about how much I missed the adrenaline feeling of going to an amusement park especially as a kid, running from a ride to the next with pure excitement. Then I thought about how it felt to ride a roller coaster that would make you feel as if your heart could literally jump and your adrenaline rush soar...

Then there it hit me.. a roller coaster ride.

As cliché as it may seem… I just needed a metaphor to compare my thoughts and feelings to in order to be able to really talk about them in the purest form possible. A roller coaster ride.. its not even the whole idea of going to an amusement park..but A roller coaster ride. Everything ive went through has been ONE long roller coaster ride starting the day I broke my leg.. and I’m still riding THAT same roller coaster ride to the very moment I’m typing this……..

ups and downs… twists and turns… excitement and fear… adrenaline rushes and boredom... hope and disappointment…

I’ve been through more ups and downs than you could ever possibly imagine. I’ve been through a broken leg and not being able to play sports for almost a year to winning ten national championships in high school. I’ve been through five different surgeries and I’ve bounced back after each one by winning league champions my senior year playing volleyball for Gallaudet and being a part of the USA Volleyball Olympics team twice. I went through chemotherapy treatments every week throughout my third semester of graduate school and managed to complete the semester with a 4.0 GPA. I went through radiation in a different city for five weeks during my last semester of graduate school and graduated on time in May with my classmates.

And receiving my master’s degree despite
all the odds was like being on the VERY top of the
highest roller coaster in the world.

And it all came crashing downhill when I found out about another tumor behind my knee. But I didn’t get off the roller coaster. Instead, I went through all the twists and turns, holding onto every thread of hope i could find. I couldn’t get off even if I wanted to. I had to make decisions I didn’t want to make and I had to do things I didn’t want to do. I put my dream of living in SoCal to a halt and moved back home. I was mindset on not going back to Philadelphia and on having the surgery/radiation done somewhere near to home. That mindset twisted and turned down in circles and here I am, back in Philadelphia typing this on my third week of radiation. The constant twists and turns keep happening- as they usually happen to people diagnosed with desmoid tumors. It has been truly hard plunging into the unknown, and not knowing which turn I have to take next or which twist I have to bear. There is absolutely NO cure for desmoid tumors and very LITTLE research on successful treatment paths. In some cases, surgery may be the answer. In other cases, radiation may be the answer. In other, other cases chemotherapy (many, many different kinds) may be the answer. It also may even be incurable and cause amputations or fatalities (not in my case at all because the tumors are located in my leg). I always find myself in constant state of fear if I'm going down the path I'm supposed to go down. Will the turn I decide to take turn out to be for the better? Or for worse? Will the turn I take decide my future and shape my life the way I hope???

Fear….. is a feeling I’ve learned to turn down a notch. I felt fear in the very beginning.. just like one would feel at the beginning of a roller coaster ride… fear of plunging into the unknown, fear of going up that long, slow ride to the top, of the steep, fast ride down, and so on... but the longer you ride, the less fear you feel. Even if you are going through similar ups and downs, twists and turns, you feel less fear because of the known. I am aware that I live in fear every single day of the possibility of receiving bad news, of being back on chemotherapy again, of discovering a new tumor, of having another surgery, of going through radiation again, and even of the possibility of having my leg amputated. However, I still feel the excitement after every time I receive good news, after every time I survived and conquered each surgery, after every time I completed the cycles of radiation, and even thinking about the possibility of never having to deal with this monster growing in my leg ever again for the rest of my life.

Feeling the excitement building up leads to adrenaline rushes for me. I love the adrenaline rushes I get from simply living my life. After having to endure through the boredom of staying at home recovering from surgery, of staying alone in a hotel room in Philadelphia, and battling with my thoughts that never seem to leave my head…… I find myself going all out in life and being high on adrenaline rushes…traveling every time I get the chance to, going out with my friends every time I get the chance to, and simply living each and every moment to the fullest every time I get the chance to. For both- those who know me and those who don’t know me on a personal level… this might paint a clear picture of who I have always been, who I am, and who I will always be.

Hope.. is what I hold on to everyday.

Disappointment… is what I am tired of feeling.

Hope… is the feeling I have that the feeling I have is NOT permanent.

Disappointment of a hope leaves a scar,

which the ultimate fulfillment of that hope never entirely removes.

Hope never abandons you-you abandon it…….

Therefore~

When the world says, “give up”

Hope whispers, “Try it one more time.”

After typing everything I wrote and reading everything I typed, there is a smile slowly forming on my face. Looking back- its hard to believe that I went through a car accident, a broken leg/cast/boot leg cast, approximately 50+ MRI's, 30+ X-rays, 10+ bone scans, 10+ CAT scans, forty-six rounds of radiation, twenty-eight rounds of chemotherapy, and five surgeries. I have been through so much in the last eleven years, maybe even more than some people have been through in their lifetimes combined. 

To know that I can still put on a smile, still believe that I will be done with all this for good someday, and still love to live life as much as I always have...

Yeah…….. I’ll be okay J

Tough times don't last... tough people do.

Surgery... Chemotherapy... Radiation..

There are times when I ask why me?
Times when things seem to be bright
But also times when things feel so hopeless
Times when I feel my patience is being tested

Times when I feel it is never going to end.

December 20 to 22, 2011.. It was three well spent days in Philadelphia. I got to meet two desmoid tumor survivors who lifted me up higher than words can ever say. They gave me hope when I truly felt it was lost.

I met with so many specialists. They assessed me thoroughly. The doctors actually said they could not understand why i went through chemotherapy in the first place. They thought I shouldn't have had chemotherapy at all because of where my tumor is located.. radiation is the way to do it...... Especially considering the fact that my tumor is a local thing. The doctors believed that radiation is what should and hopefully will destroy my tumors for once and for all.

(desmoid tumors aren't considered cancer since they grow locally and won't spread to other parts of the body. However, people have concluded that desmoid tumors can be worse than cancer since it keeps coming back, and it can be a lifetime thing as there is no definite cure yet)

Everything happens for a reason. I have always believed in that concept but i believe in it more than i ever did before at this moment. It is truly times like this when I realize I really do have the greatest family and I cannot ever imagine asking for more and I never will. My family, yes all six of us (it wasnt even hard to drag my brother who has his daily arguments with the alarm clock) went to Philadelphia. They went not because they had to but because they wanted to and needless to say, that meant the world to me.

I was given the chance to step out and look at everything around me. I was able to see clearly that i have so many truly wonderful people in my life who loves me just as much as i love them. I was given the chance to know who will support me and stand by my side all the way. I was given the chance to see how truly lucky and blessed i am. I was given the chance to realize how much those important people in my life means to me AND how much i mean to them. I was given the chance to really and truly appreciate both the little and big things in life. Life, at the moment, became so much more meaningful- and simply really beautiful in so many aspects i never thought possible.

so in a sense, my limitations became beautiful privileges.

Back to the point. The doctors told me I am to have a surgery to remove my tumor and then they will perform an intra radiation inside. Then I have to go back in a month to receive radiation therapy everyday for five weeks. I told them it wasn't going to be possible since I am in my final semester of graduate school. I firmly indicated that I will come back in August when I am done with everything academically to focus on my leg and receive radiation treatments. The doctors looked at one other and assured me that time isn't in my favor and that I will have to have the surgery as soon as possible. I will also have to have radiation therapy a month following the surgery as soon as possible. A million of thoughts rushed to my head and they swirled like crazy.. How am I going to go through this and still receive my masters degree this may? Will I have to put off graduation? How will I be able to miss classes? I won't be able to graduate with my classmates who I've grown to be very fond of through the two years we have had in the program together? How will I deal with not being able to live with my girls and mark at alumna house for my very last semester at Gallaudet? The questions kept pouring in. But I knew one thing for sure, my health comes first whether I liked it or not.

I cried in silence all the way home. But as each tear poured down my cheek one by one, i grew more determined that I will go through this somehow-one way or other..... And that everything will be okay.

The first to do on my list was to vp with my teacher to discuss the possibility of implementing my last semester of graduate school with my situation indicated above. That was when I received my first glimmer of hope from the end of the tunnel. My teacher was so unbelievably supportive and she assured me that it IS going to be possible, and that we are going to work through everything. My spirits were lifted and i felt lighter than i ever thought possible. A surge of positive thoughts came rushing to my head as i started to think about what was to come. I will be able to make up the hours i am going to miss, and graduate on time with my classmates. I emailed my close friends explaining them the situation i was going to face in the times to come. The support i received from them blew me off my feet.I actually felt lucky to be in the situation I am in because I was given the chance to truly appreciate my girls for they continue to show me the true meaning of friendship every single day. It is truly that through hard times, you realize who your true friends are and you know for a fact that you will never, ever let them go.

The only way out is to go through- so I am going to welcome the challenge of going through my fourth (and hopefully final) surgery along with radiation for five weeks with open arms. So with that being said, January twenty-six....... I am ready for you.

You were given this life because you are strong enough to live it.

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.

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 30^th 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.