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