Had to be said

Since I'm bored, and still pissed from what was done. With no explanation, and without any notification. I decided to write some of this stuff here, on my own blog spot!

Relationships can be very difficult when you are a cancer survivor!

As you might have already known, I myself am a cancer survivor of Medulloblastoma. I know this is the most common malignant brain tumor out there. In my case, this was a very rare one for me, this was between survival or not! Yeah you may probably already have read before, that I was in a coma for quite a while, and when I woke up, I was paralyzed from top to bottom. Meaning I was bald, could not eat, could not swallow, could not talk, could not walk, could not stand, or could barely even move. I was in a stretcher and wheelchair for years, I went through years, of all kinds of therapy. Just because of where my brain tumor was originated in the cerebellum, I do suffer with tremors, and balance problems, oh yeah, I was also told that this would be, for my entire life!

So back to relationships, I know many people out there, who only cares about looks, popularity, and wealth. (As eww he's sick, and weird I don't wanna hang with him) Then there is a very small amount of people out there, that does not care what you look like on the outside, as long as you have the kind heart on the inside. (If you asked me, that is what matters the most!) Evidently I haven't seen any of that for 3 decades. I know many survivors who are dating, living together, engaged, married, or even with a family of their own. Like I have said, 30 whole years!

When ever it comes to New Year's Eve, New Year's Day, Valentine's Day, Wedding Days, or even Baby showers. Those days, would always get me very upset, lots of deep thinking, sobbing on the inside, and asking why? I have shared this before, at a recent wedding I had attended, we were drinking, dancing, partying, having a great time. Then it came to taking pictures of each table. At our table, it was a picture of this married couple, the engaged couple, the dating couple, the other married couple, then it came to me, just by myself, which felt very awkward. Then one of the husbands, from the table who is like a brother to me, popped up right next to me for the photo. It did make it feel a little less awkward, and cool that he cared and all, but still felt kinda bad that I have to be in this situation.

I've also wrote about how there is a pro and a con from being a survivor.

Pro: Everything is restarted again from the beginning. 

I have said earlier, I was paralyzed when I had woken up, I could not eat, swallow, talk, walk, stand, or barely even move. I had to start everything over again. Like literally from crawling on the floor, to my very first baby steps, to learning how to speak, and eat again. I don't know how that is a positive, but I am able do all of above now.

You also then realize who your real friends and family are.
If you have read my bio before, you know I was an honor student, and knew like everyone in my grade. After graduation, all was gone, never ever heard from them, or reconnected again.

The only other thing I can think of is, I do get permanent placards to park closer (aka handicapped parking) so I do not have to walk 10 miles away. Also there are some people in this world, who do see and feels bad for us, that they will go out all the way to help you around.

Con: Oh do I have a lot to say about this.

On my bio I have said I loved playing sports, one my favorite things to do, was just riding my bike around the neighborhood. Thanks to these damn tremors and balance issue, I can not do any of those things anymore. I can not travel to wherever or whenever I want anymore, I always gotta depend on parents for transportation, and I never have the choosing to where I want to go.

I never had a prom, never been to a homecoming, never been to any dance nights, or reunions before, just because of what I am now.

Education was a serious thing for me and still is. After my surgery and regrouping, I was able to return back to school. Of course, when they know that you have returned from a hospital and all, they automatically put you under special needs, and special ed classes or lower learning classes. Eventually a High school teacher of mine, saw my learning abilities, and had raised me up to where I should have been all along! My child study team counselor, had me working with division vocational rehab (DVR) towards college. I worked with DVR for years, and was getting nowhere, I was getting aggravated with them. They even put me through a stupid test they had, and the results, were not to continue education and do job searching with them. I was boiling mad with what she had told me, I scolded back "Who ever tells someone not to continue with education?" I just left them! I was struggling through college by myself with financial aide, and that was not much help either. I finally graduated college with a degree in web design. I've come back to DVR to shove my degree in their face, and they had absolutely nothing to say. Once again I asked  for help with the job searching, and again I got absolutely nowhere. Bottom line DVR was nothing but trash, and a complete waste of time!

In 2009 MSKCC had introduced me to Children's Brain Tumor Foundation. Then I also had found out, this Foundation was founded and started when I was first diagnosed. Thanks for all that time lost.

I've said I was well known before and knew all. Now been forgotten, because of what I am now? "All By Myself" now. 

Just because, of these tremors and balance situation I have. Wherever I am, especially the malls, I am always starred at (thinking that they are thinking what the heck is your problem).

Thanks to these damn blood cells floating around and now clogged up, I have lost hearing on my left side. Now when people are talking to me in a loud crowd, or even whispering to my left ear in a movie theatre, I don't know what was said. If I do not respond, they automatically think I am ignoring them, or just being rude.

I have heard you are very lucky, and god has plans for you, well I still am waiting for that special something to happen.

Someone had told me, you do not need a special someone to live on, and I had taken that statement within. Now I am still questioning about that this very moment! Again "All By Myself"

Till today, I still see many friends of families, that are way younger than me and introduces me to their boyfriend/girlfriend. I am happy for him/her, but then down deep in my heart, I always get very depressed, with pain in the chest, thinking bout past times, hiding the tears, knowing that I will probably never have that feeling.

There are places to go to get away from all of it. I have a wonderful, great time, no one judging you, with much respect earned. Then when it's over, you are forgotten about, I never see or hear from them again.

I could go on and on, with this topic, and this could last forever... I've repeatedly said this over and over, "Hey this was not my choice, do you think I am doing that stuff on purpose?" Sometimes I think some people do not really know what we have to go through, until they become like us. That may sound very bad, and I wish that to never happen, but it is kinda true, like that saying "You don't know someone, until you walk in their shoes" or something like that. Sometimes, ok most of the times, I just lock myself in my room, listening to the lyrics of my favorite songs, doing some deep thinking, sobbing on the inside, asking why, and feeling not belonging anymore. I do have some non judgmental friends and family here, but all are from other states/countries or they even have a family of there own, to take care of now. Yes it was always easier to say forget you, screw you, forget that, see you never, back then. As you grow older, and not any younger, you think more to the future. Will I ever have a special someone, on New Year's Eve/New Year's Day? Will I ever have a date for Valentines? Will I ever have a special someone to take a photo with, at my friends wedding? Will I ever have my own wedding? Better off, will I ever even have my own family?

Still waiting right here

I have posted this before on Facebook but, I wanted to put this on here. The one most thing that bothers me most, out of everything else is, when mostly everyone, even my own family treats me differently than before I was sick! I already accepted I am physically handicapped and I know I will have to live with this for my entire life. I'm always sitting alone, no one ever wants to come up to me anymore because who I became. I know that is the one main reason why, all the friends I knew from before, does not want any part of it. My sister? She doesn't even care, I know all of her her friends, they will call her, text her, come to the house and pick up only her to hang out, to a movie, lunch, dinner, lounge or whatever and, same thing when we go to a friend's of family house. My own cousins do same too, they will call her, text her, hang with her, only. For my birthday you will see just mostly my cbtf family and some family members wish me a happy bday on my facebook page, my sisters page? No contest. I know I have already heard (if they don't, maybe you should start it fist and it will spread) believe me, I have, and same crap happens. I've called them, so what? I wished them happy bday, ok and? It's never a reciprocal. I've repeatedly said it over hey it was not my choice!

Feeling bleh...

For every birthday that goes by, year after year. It makes me think of how this link Myself is my life. Yes when I was young, I did know lots of people and friends, I knew all in my grade from elementary to high school. The only difference is after HS graduation, I was forgotten and left behind, everyone went on without saying anything to me. I've tried to contact them, but all has gone to begin there lives. I already know it is because who I am now, I ignore it, and say screw them! Hey it wasn't my choice! I know ONLY some of my HUC/CBTF friends and family will say something like " I am here for you" That is nice to know but, that doesn't really do much for me, hey you guys live all around the world, and I'm always bored out of my wits, lonely, talking to myself. I take more meaning in phrases like " Stick and stones may break my bones, but words will never hurt me" You can't smell, taste, touch, or hear form a photo, oh 1 out of 5, I guess that is good enough? Yeah it was easy then, but it does get harder and harder each single day.... Not 10 years old anymore, teen years are gone, 20's flew past by. No idea where life is going anymore. Just an Aloner! 
Michael J Fox never got any younger when he went Back to the Future.

A short Bio

I was a happy normal kid growing up in Freehold, New Jersey. I loved playing all kinds of sports, such as basketball, baseball, kickball and badminton. I would really enjoy just going outside, riding my bike and playing with my friends. In 1988, my family and I were coming home from our car trip from Canada. I was beginning to have major headaches, continuously vomiting, weakness and, with a high fever.  

I was rushed to Jersey Shore Hospital, there I was put through many scans and was told I had a cancerous tumor grown in my head. There was an airport behind the Hospital therefore, I was flown to Memorial Sloan Kettering Cancer Center by a helicopter, my parents could not come on the copter so they had to drive all the way there. At the time I was only the age of 8, I did not know much then or knew what was going on. The doctor’s said to my parents, this surgery was very dangerous and that this would be a 50/50 chance of survival and, only I would have to agree to go on with this so, my parents just told me to say yes and the doctor’s will fix everything (I did not know what was said between parents and doctor’s, mom and dad just told me to say yes). The tumor was removed and replaced with a shunt, after the surgery I was in a coma for about a year. When I woke up my parents including my doctor’s were very surprised, my eyes were opened, but I could not talk or even swallow. I had to have a new feeding tube changed every week and a new ivy everyday, man did it hurt! My first words was Mom and Dad, everyone was very surprised that I still knew everyone and most of the past, just not what happened in between.

I was moved to Mountainside Hospital to begin therapy. I needed therapy just to help me speak, stand, and walk again. From the effects of the brain tumor, I was left with poor balance, tremors and speech problems. I could no longer do some of the things that I had loved to do anymore. I had to go through years of physical, occupational and, speech therapy. I started off in a wheel chair, slowly worked up to crutches, then to a walker, and now a single walking cane. In 1990, I was finally able to return to school and start from where I had left off. A year later, I had moved to another town and everything was brand new to me. New house, new neighbor hood, new school, everyone was a stranger to me, I knew no one here. Since I was away from school for about a year, I was very lucky that I was able to skip a grade and go straight to middle school. When I started middle school, I felt that I was placed in lower classes, just because of my condition. I think the child study team did not realize that I was able to do harder work. However, I went on to high school and then on to a successful college career. During middle and high school years, I was pretty well known and knew almost everyone in my grade, sometimes I thought was it because I was the only one who strolled the halls with a wheelchair, walked around with a walker and, a cane?   

In 1996, I was having these weird feelings again and, was returned to MSKCC. Again I was put through multiple scans. Then the doctor’s wanted to test something, they had me in a special room where I was watched 24/7, they had shut off my shunt for a while. Days had gone by and, I was supposed to feel nauseous, weak, not wanting do much. Nurses were even asking me if I still knew what day it was and, who is our current president? Just to see if I was losing my memory. I answered all questions correctly and been ok for a week, therefore my shunt was removed. After graduation no one kept in touch with me anymore. I have called them but they either moved or changed there numbers without me knowing. There was no doubt about it, it's not like I did not know why they did that? It’s because I am not able to do a lot of things that they can do and, me being physically handicapped! When I had the tumor and shunt in my head, my parents did not want to go anywhere to far.  Now that I had shunt removed and everything, I was actually able to go on a real vacation, in 2001 on the islands of Hawaii.  

In 2008, I graduated college with a degree in computer science. I have been trying to look for a job, but because of the bad economy, it has been very difficult for me to find work. I have been to a couple of interviews but they tell me this and that. Many times I think they do not hire me, because they find someone better for the job/is not handicapped. There are many times when I felt lonely, frustrated and upset at what I have to go through. There are even times when I was just feel hopeless and do not belong anymore. 

In 2009, something very important happened in my life. I was told about a very special organization by my social worker at MSKCC. I went to my first Children’s Brain Tumor Foundation meeting and it had changed my life. Through CBTF,  I had the chance to go to Camp Mak-A-Dream in Montana.  There were many activities at the camp that I enjoyed, and I was able to take classes about being a cancer survivor and learning how to cope with our conditions. I challenged myself, and even climbed the high ropes. I was very afraid, and did felt that I could definitely not accomplish something like this. I was sitting there about an hour watching others having fun, and I was thinking this may be my first and last time to do this. I had gained so much trust and respect here, that it made me want to do it even more. Others were encouraging me to do it and, I did not want to let them down. So, I held my breath, closed my eyes and actually climbed to the top. The friends I made at camp proved to me that I could do things that I never thought I could do. 

I also became involved with the Young Professional Group and, I know how important it is to have someone to support and help others when they do have a disability. I now always volunteer for the YPG/CBTF events whenever I can. I have met really nice, caring, loving and, nonjudgmental people where I can actually call my real friends and family. I was able to speak at their annual Gala with my good friend Morgan Sobel Gala-speeches to tell my story and, let out feelings that I having been holding inside all this time and, believe me it felt good! In October of 2011, CBTF had offered me the title as Brand Ambassador. I was gladly to accept the position; I was just very excited to be a part of CBTF staff and family.

My experiences at camp and my connection with CBTF has turned my life around. I consider CBTF, YPG, and the people I met at camp a huge part of my family. In the beginning I was very upset at myself, frustrated and, lonely then CBTF, YPG, and CMAD were there to pick up all the pieces. I am so happy to be where I am now, there is nothing I will not do for them. I love my CBTF and CMAD family! They have turned my whole life around once again. I am happier and have more confidence in myself when I am with my real friends and family!

Waiting for you....