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Grade II Oligoendroglioma

ypk1981's picture

Hello world.  It all changed back in November 2008.  While working as a helper for the dept. of sanitation here in Long Island, NY I was lifting a can when suddenly i felt a sharp pain in my head.  My vision started to get really weird, almost like when you look into the sun for too long and then look away. The kaleidoscope feeling would later be determined to to be a visual seizure.

 

Going back a couple weeks prior, I was experiencing severe tingling in my left leg up into my crotch area.  Already thinking the worst, I started googling Tom Green and his testicular cancer.  I was rushed to Nassau University Medical Center (NUMC) and after a bunch of tests the doctors were going to send me home when one of them said, "we just want to run a CT scan of your brain and a sonogram of your testicle area".  So here I am 28 yrs old....a group of doctors standing around in a circle and right then and there I knew something was wrong.  Almost as if they were all asking one another, who wants to tell this guy the grest news.  He just hit the brain tumor lotto.  A rare 1 and 100,000 chance of joining the endless fighters around the world, battling this terrible, incurable illness.   NUMC which is a great trauma center but not exactly a patient's 1st choice to have brain surgery, especially when a prisoner is your roomate.  I remember how the guy dressed in all orange  was shackled next to me, screaming and begging for pain medication meanwhile he looked perfectly fine.

 

Nevertheless, I was admitted to the hospital and my girlfriend at the time (presently my wife) said, hold on, let me call my best friend because I think someone in her family is a doctor. She called her friend and her friend said...."listen....let me reach out to my uncle.  Dr. Sal Insignia from NSLIJ hospital in Manhasset.  He's a neuo surgeon and i'll talk to him.  Please find out the name of the doctor whose doing your surgery."  Turns out a doctor was coming from another hospital to perform my surgery....like I said earlier, NUMC..great place for gun shot wounds, stabbings...overdoeses....brain surgery?..not so much lol. So apparently they were calling in a specialist, his name....Dr. Salvatore Insignia.  Everyone almost lost it....phone calls were pouring in....OMG...please take care of him....save his life etc etc. What a small world.

 

So that was in Nov. 2008....I had  surgery and came home just before Thanksgiving. Let's just say every thanksgiving from 2008 till present day I have alot to be thankful for.  I followed up with routine mri's every 3 months.  I didn't have any treatments....just the "wait and see approach."   You know, usually with any surgery you don't feel well or you have some type of symptom and you go in for surgery.  I did have bad headaches as a kid and this weird tingling feeling up until that day I had the visual seizure, but other then that, I felt I was in the best shape of my life and I felt great.  The doctors told me those migraines and headaches were most likely related to this tumor and they said the tingling sensation was a symptom as well. Something in the right side of my brain was causing severe tingling on the left side of my body. 

 

Scared, shocked, angry, no time for 2nd opinions, I somehow knew the neurosurgeon on a personal level lol...my first surgery was rough, mentally and physically.  I was in ICU for 10 days.  I had learn how to walk all over again and I had a small area of visual loss peripherally to my left side once the tumor was removed.  They said it was around the size of a cherry....maybe a little smaller. The pathology report came back, Gade II Astroctoma.  My neuro oncologist at the time was Dr. Alexis Demopolous from NSLIJ.  He said these tumors tend to grow very slowly and he would feel comfortable with a wait and see approach type of game plan.

 

In Feb. 2011 my mri shows something is coming back.  I have been on google for years now trying to find a cure or solution to a problem that unfortunately until present day still cant be solved.

 

I choose MSKCC for a clinical trial.  My tumor will be resected by the chief of Neuro Surgery, who will then try to create a vaccine from healthy blood donors T cells in a petry dish. It will then be re-injected back into my own body so my immune system can try to kill whatever was left behind after surgery.  It was similiar to the Dendric Cell vaccine trials that have shown to be having good results with GBM patients currently.  I found the idea fascinating, but after my surgery I was told there wasn't enough tumor to create the vaccine.  Heartbreaking....but yet, everything happens for a reason.  Maybe that vaccine would've done more harm then good.

 The pathology report this time came back Grade II astroctoma with a little oligendroglioma in it, which I was told by my doctors to have a better overall prognosis compared to other types of brain tumors. 

 In November 2013 I called Weill Cornell Medical Center, unhappy with what transpired earlier in the year with my doctor.  He said everything looked great, go on vacation, have fun, and i'll see you in 3 months.  When I came back, he recommended surgery immediately.  It turns out when your scans are re-evaluated every 3 months its very difficult to notice any type of change, or progression, but when you look at the post-op mri scan to present day mri scans that's when he realized a significant tumor growth  and the immediate cause for concern.  So here I am with a vp shunt because my tumor is situated in the right occipital lobe, right near the ventricle.  The part of the brain that stores 20% of your CSF fluid.  This VP shunt was unbearable and I felt the neurosurgeon at MSKCC was somewhat responsible for the pain and discomfort I was dealing with everyday in one way or another. 

 

I called Cornell and asked for Dr. Greenfield because I knew my tumor was very similar to pediatric tumors based on its classification and location.  They said Dr. Greenfield only works with children and they referred me to his colleague Dr. John Boockvar.

Dr. Boockvar performed my surgery in 2013 and once again we only followed up with mri's.  By now we had our beautiful baby boy in 2011 and I continued to live my life to the fullest without any deficiencies and symptoms other then my inital small visual loss from my first surgery in 2008.   Dr.  Boockvar also removed my vp shunt and replaced it with a lumbar peritoneal shunt.

 In 2014 Dr.  Boockvar says," this thing is growing and "let's burn a whole in it and hopefully you'll be good and stable for at least the next 5 yrs". 

 In March of 2014 I underwent 6 weeks of standard radiation treatments in Manhattan at Weill Cornell Medical Center with my amazing Radiation oncologist Dr. Gabriella Wernicke.  I remember my first treatment where I had a panic attack.  She prescribed me Xanax and  I took it before my treatments because the first couple times being locked into that machine with a mask holding my head down really freaked me out.  As soon as they hit the switch I would smell a powerful odor of chlorine as this machine was blasting my brain with the hopes of irradicating this poison in my brain once and for all.   They never heard of a patient experiencing this type of smell but nevertheless it happened every time I was treated with the radiation machine. I used to play a song with every treatment from my cell phone so I wouldn't think about what was actually happening to me.  I can't remember them all, but I'll always remember the first one I chose and the last one.  The first one was "Radioactive" by Imagine Dragons.  I felt that was an appropriate way to start my radiation treatments and my last song was "Three Little Birds" by Bob Marley. 

Days and months and years went by and I finally start thinking and believing that maybe all this brain stuff is finally in the past and it's gone forever.

 I'm so worried at my 3 -6 month doctor appointments and I know it's a terrible way to live but for me it becomes my new norm.  It is what it is and my motto has always been from Day 1 "It can always be worse." But just like the lyrics in three little birds, I tell myself every morning when I wake up, "Every lil thing, is gonna be alright".

 In 2016 our beautiful baby girl was born.  We told ourselves, if one day something were to happen to us, at least they'll have eachother.  Although my wife and I were perfectly content with the thoughts of only having one child but, we felt the best gift we could ever give our son was a brother or a sister.

 So now, days and months and years go by and I remember asking Dr. Boockvar..."when would you consider me cured"? His answer was 10 years.

 So here we go again. 5 years later, almost to the day....Jan. 2019 a new sign of recurrence or necrosis or growth, either way something's going on in my brain.  I broke down...I remember crying so much those first couple days because I just couldn't believe it.  I really thought I was one of the lucky ones who beat thier cancer for good this time around and having two little children really made things harder for me mentally.  So my options were, surgery although hydrocephalus complications were terrible and would most definitely follow or chemotherapy.  I had my last mri in Mayand after seeing Dr. Demopolus it was then that I realized as much as surgery will suck, if they're able to get in there, screw it, get in there and cut it out.  He now works with Dr. Boockvar (small world huh).  He said if I opted out of surgery he would recommend 6 months of PCV chemotherapy and that would only shrink whatever's been growing, but not remove it.  Plus, I recently read a clinical trial study which compared PCV vs Temodar.  It concludes one of the drugs "vincristine" that PCV is composed of is useless where it doesn't penetrate the blood brain barrier.  Temodar is better in regards to crossing the blood brain barrier and also has less toxicity and side effects apparently.

 So, here I am June 20, 2019,  10 + years since my inital diagnosis.  I just had my 4th craniotomy surgery and hoping it was my last.  The pathology report came back Grade II Oligoendroglioma with possibly some Grade III in it.  The final report is still pending, but Dr. Boockvar said he was very pleased with the surgery.  A gross total resection.  He was concerned my tumor was starting to invade an area of my brain that controls my short tem memory and possibly losing more vision on my left side, but luckily all went well. His tumor board is recommending 6 months of temodar.  My tumor is IDH1 positive which is a fancy term for what it's made up of and helps doctors determine what's the best drug or course of treatment to give their patients after surgery. Dr. Boockvar also did a lumbar shunt revision to help with the hydrocephalus that resulted after surgery.

 But like I said earlier, here I am, July 7, 2019...I'm still here.  It looked so grim, so dark, so many what if is and don't get me wrong it still does, but who knows what tomorrow or next month or next year will bring.  Do I read about all that stuff like others do. Yes....Absolutely  Sugar, dairy, alcohol, all those things that can possibly cause more inflamation and cause new tumor growth, Yes,  but I feel you still need to have to have a balance in life.  Gluten free, dairy free, my daily intake of CBD oil, frankincense , melatonin and tumeric, using my cell phone, but only on speaker...yes that's my daily regimen....but if I'm really really in the mood for Taco Bell one day....i'm runnimg for that border baby and Yo Quero Taco Bell because it won't kill me and I'm not going to deprive myself of anything in life because we're only on this planet for such a short amount of time that we should live our lives to the fullest each day because we're truly not promised tomorrow.

 Am I terrified this thing will come back? Absolutely.  But nothing will change if I worry and worry about it all day.  Just like Bob Marley said in Three Little Birds, "Don't worry, bout a thing, cause every lil thing, gonna be alright".  I believe in a strong positive attitude.  Sending good vibes out into the universe.  Telling myself everything will be okay and whatever will be, will be and once it's on my plate i'll deal with it then. 

 I thank my amazing wife and mom because they're the one's who truly have taught me to think this way and how to live my life this way.  How to stay positive, even when so many times it feels so difficult for me to do so. 

 I will continue to fight this disease.  I tell myself, I WILL BE not I hope to be there for my wife and kids and my family.  Maybe my clock was just turned back to 2008 like Dr. Boockvar says.  I used to feel so upset and discouraged when I couldn't find more clinical trials for low grade gliomas, but I was thinking about it today.  Maybe that's a good thing, maybe this temodar pill they're talking about will work.  Maybe it's worked for other people out there like me who have my type of tumor and there cancer went away forever.  Maybe i'll be one of the lucky ones, where this thing comes back in another 5 or 10 or 20yrs or never.  I mean I was lucky in the sense it didn't come back for 5 years after radiation.  Time will tell but as long as I continue to believe in my heart that everything will be okay, everything will be fine because I know it will.

 I hope my story gives people hope and light in a world that often feels so unfair and dark.  Thank you to my family, my amazing mom and dad for always being there for me.  My beautiful wife who gives me the strength everyday to battle this disease head on.  I envy her positivity and I truly believe she has taught me how to be positive in any situation in life.  Love you baby. My amazing kids, my sisters, aunts, uncles, granparents cousins, friends, co-workers, immediate family, extended family, I love you all so much. God bless you guys.  The amazing Dr. Boockvar and his whole team of doctors and nurses and staff at Lenox Hill hospital.

 And to all the people out there battling brain tumors around the world....you're not alone, good luck hang in there, trust your doctors, tell yourself it will be ok and it really will.  My wife told me a few years back that my name has a meaning.  It means "beyond the horizon."  Always keep your head up in times when it's very easy to quit and continue to always live your life to the fullest and beyond the horizon like I do.

Thanks for reading my story.

 

 

 

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