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How It All Started

December 1, 2016

It Started Right Here

 

 

My first memory was driving with my parents in the back seat looking at a street light – squinting my eyes as the lights would prism. I was about six years old and recall telling myself this is a strange alien home, and I would like to return to to the light, where I came from.

 

It was before my understanding religion.

 

Flash forward 31 years, Halloween night, Oct 2015. I am riding in an ambulance after urinating on myself while foaming at the mouth - Once again remembering that memory.

 

At this point I am yelling at the EMT's to drive me home, I likely fainted from drinking too much the night before. I remember them looking at me with disdain like I just did heroin.

 

They proceeded to tell me I had a fifteen minute Grand Mal Seizure - I had no clue what the hell they were talking about I was young with no medical history, healthy as a horse. Tall (6,2), slim (160 pounds)  Great job as an IT Manager, beautiful/loving wife. I had life by the short and curly's.

 

Had you had a seizure before one EMT asked? I responded, what's a seizure? I am not epileptic (all I could think of). At this point, I felt tired and extremely foggy.

 

Once being received in the ER, they immediately did a cat scan, also loaded me up with Ativan, dissociated at the time. My wife was with me when a doctor came and said: “Nick, you have a brain legion.”

 

Thinking it was something minor, I was like OK, can I go home now? Boy was I wrong...

 

Immediately after I remember my parents and my pastor showing up, at this point I was confused. They sent me to do an MRI with contrast.

 

Seconds later I felt what would equate to a blast to the back of the head. One measly picture showed my brain with a baseball sized primary brain tumor. At this point I was in a parallel universe, I was fine, no sickness, nothing - now facing certain death.

 

Take a minute to think about that. Have you ever contemplated your death? What that means and to do so in fractions of a second.

 

I wept like a small child thinking about my pregnant wife and family living without me. Confused pain just filled me thinking why God could do this to me.

 

Your brain thinks in two separate ways, rational (It is up to God when I die, I am not going to let this bother me) and emotionally (Holy Sh!t what just happened).

 

The next few days friends and family visited me, I contemplated my life. My only wish was I did more to serve others.

 

Doc, what are my options? What is my next step?

 

Nick, this has to be removed – we will schedule surgery as soon as possible.

 

Ok, what is my prognosis?

 

We don't know without a biopsy.

 

Lucky my Saint mother who works in the medical field put me in touch with the head of Neurosurgery at Brigham and Women's, Dr.Golby.

 

A week later I did an awake Inter-optic MRI Craniotomy; the tumor was in my speech center, and they wanted me awake to remove as much as possible.  Told there was a chance I could never speak again; even death was a possibility. The surgery was six hours - during the first three hours, I was pretty drugged up, so I remember very little.

 

The last three hours I remember everything, coherently talking while Golby would slice the tumor out. I equate it to have a someone behind you with a paper cutter, removing brain tissue. By the way, they say there is no nerve ending in your brain, calling B/S on that one. I never felt pain like that – emotional and physical I was just drained, crying.

 

I told the Doctor, you are an angel, cut it all out - I repeated this several times.

 

She removed 93% of the tumor, and I am still a fully functioning human being yet left with something that was beyond anything I have perceived before. Let me say your perception on life changes.

 

I had an indescribable love for this Doctor that I barely knew – she saved my life. I wrote her this letter and sent flowers.

 

Dr.Golby,

Every time I would try and write you a note - I could never find the words to express my gratitude. How can you possibly thank someone for saving your life, there is simply no answer?

 

It took me several weeks to discuss my surgery to anyone without getting emotional. Not because of any pain but how much I was touched by what you and your team had done. It is something that will always stay with me. You truly are an angel.

 

What you do each day is a gift, even though the choices you make are extremely difficult. I thought to work with computers was demanding, I can only imagine having the human dynamic involved. Had I died on that operating table I would hold no ill will because I know you take great pains at doing your absolute best.

 

In a strange way, my tumor was the greatest thing that ever happened to me; I now know the difference between living each day and loving each day. It’s funny how we glide through life forgetting what important, love, memories, friends and family is. All the medical advances and we don’t even understand consciousness; I think it is whatever we make it.

 

That being said, I have since found the answer to my question “how can I reimburse you?” - The purpose of our lives is to make a difference in someone else’s. I will be sure to pay it forward.

 

Forever Thankful. -Nick

Her response back was something I cannot say as I hold it to be dear to my heart.

 

The anticipation for the next appointment was agonizing as I would find out what kind of tumor I had. Keep in mind 90% of primary tumors have less than a five-year prognosis.

 

I had a Grade 2 Oligodendroglioma. As she said it, I immediately keyed it into my iPhone looking for median survival times and I found on Wikipedia...

 

“In one series, median survival times for oligodendrogliomas were 11.6 years for grade II and 3.5 years for grade III.“

 

She stopped me and said this, “Nick you could get hit by a car tomorrow, I would never give a prognosis.”

 

Furthermore, I had the 1p/19q deletions (no clue what that means) and another genetic mutation that means my tumor would responded to chemotherapy and radiation.

 

They told me I had three options... Do Nothing. Chemotherapy (Temodar) & Radiation or do Clinical Trials. I ask her what she thought was best and was told to do the drugs that work, that I had a plenty of time. Funny how you hold onto the notion that medical advancements in the next 15 years could save me. However, it’s just that, conjecture.

 

I left with every emotion one could go through, from anger, hate, sadness, love, fear, anxiety, etc... I also quit a 14-year smoking habit right after surgery which furthered my lunacy. Smoking had nothing to do with the tumor; I say that because I wanted to blame myself.

 

Watching my parents and four siblings suffer from this was bearable. I then decided I would overcome this tumor but how? Is it incurable?

 

So I did what any sane IT Manager would do and scoured the internet for new treatments. Reading through clinical trials, etc.

 

I met a Neuro-Oncology at Dana-Farber and decided my fate. Temodar (Chemo) 7 months and six weeks of radiation. While sourcing the internet, I came across a study by GW Pharmaceuticals – using cannabidiol (CBD) while taking chemo and radiation. I bought the best CBD on the market $400 for a few grams and started treatment.

 

I also did a lot of Juicing (Carrots, Beets, Broccoli, Blueberry's, spinach, kale, acai, etc...)

 

My six-week radiation treatment has since ended and will be getting an MRI soon. I will be sure to update you all of the results.

 

The takeaway from this story is to stop worrying about everything your cannot control. Make a difference in someone's life, and it will change yours.

 

I know why this happened to me – to help you.

 

If I could have brain surgery and quit smoking – nothing was impossible.

 

I feel we all have to die to know how to live.

 

 

 

 

 

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