Monday, August 28, 2017

OPPORTUNITY IS OBNOXIOUS

Be selective about who you chose to be in your life. 

This can be very difficult when your trying to launch a brain cancer campaign from the ground up.

Please understand that I want to reach out to as many people as possible but I will only allow a select few into my inner circle. This doesn't mean that I don't want to connect with everyone, just realize it means certain details need to be kept private.

Everything I have done to this point essentially came down to my attitude. Yes, Ive asked for medical advice; business help, spiritual guidance, and every person that Ive come in contact with has been fantastic in one way or another. Everyone has a story and advice.

Ive also had "close friends" ignore me, make plans, cancel, apologize, make plans again, etc. etc. You get where Im going. Thats just the way the world works and everyone is always busy. I respect that. A lot of people do not know how to interact with you once you're diagnosed and thats something the patient and the other person have to deal with on a daily basis. As Eric Thomas says: "You ain't got but a few people in this world who actually care about you."

The one thing I never wanted from anyone was money. I continue to live on ramen profit and personally think its complete bullshit that I should even consider the thought of applying for  disability to continue living. Disability is there if you are disabled. I walked 10 miles yesterday and played 36 holes the week before. Do you call that disabled? Neither do I.

4 1/2 months after my surgery I tried working again. Although I was still taking chemotherapy, I just wanted to interact with people and contribute to society. After two days of training as a server at a sports bar, it was too much. The old things I were capable of doing were no longer part of my instincts.

Forcing myself to focus was foreign to me. It was hard to move at the speed I once had. Constantly adapting to new situations, I had to fall into a new routine where my brain was not ready for that type of change. My intentions and attitude were always correct but my body said differently.  After my second training shift I went home, fell on the bed with all of my clothes on and passed out.

The next day I called the manager and thanked him for the opportunity. Two weeks later $135 was in my bank account. At least the cell phone got paid and I made a few friends in the process.

When you have severe surgery, radiation, chemotherapy, it takes about a year for your brain to return to "normal" according to my Radiologist Dr. Emad Youseff. Attempting to work that early was a very unique learning experience that I will never forget.






Saturday, August 26, 2017

This isn't going to be chronological (Steroids)


I want to make sure that this comes off as real and raw and as honest as it can be. 
Earlier this morning, a newly acquired friend on Facebook reached out to me. Her best friend was recently diagnosed with a similar condition and is concerned about her behavior regarding the steroids. 

Before surgery on 12/26/16 I was prescribed with a steroid called Dexamethasone 4mg. 
(This drug is designed to reduce the swelling in the brain and was absolutely necessary in order to prepare me for brain surgery). I want to emphasize the size of this medication as its severity is extremely large and can have severe side effects. 

I took 1 tablet by mouth every 6 hours for the first 3 days (4 a day) 

Days 4-6 I took 1 tablet by mouth every 8 hours. (Reminder) this drug is designed to be tapered off as you discontinue it. 

Days 7-9 I took 1 tablet a day 

On day 10 I had brain surgery (January 5, 2017) 

As I recall, I was discharged on January 7th, or the 8th. (Real and honest).  

I then began taking a steroid called Methlyprednisolone 4mg Dose pack.

Post Surgery:
Day 1 I took 6 tablets every 4 hours 
Day 2 I took 5 tablets every 4.8 hours
Day 3 I took 4 tablets every 6 hours 
Day 4 I took 3 tablets every 8 hours 
Day 5 I took 2 tablets every 12 hours
Final Day I took 1 tablet for 24 hours

MY SIDE EFFECTS:

Appetite

Immediately I had an insatiable appetite. I tried my best to eat healthy. However, I found myself up at 4 in the morning making 6-8 eggs with tomatoes, avocados, lots of cheese, and whatever else was in the fridge. After a brief nap, I would become hungry again. Eating at least one peanut butter and jelly or a turkey sandwich. By the time dinner rolled around, I wanted more and more. Long story short, I ate all the time. I gained 20 pounds in a month. You will be HUNGRY

Irritability

Although I like to think of my self as a calm, well thought out individual, I began to feel extremely  agitated. I recall yelling at the Keurig machine, the TV (commercials are louder than the actual show) my family, and anyone who would come into contact with me. My senses were heightened; the smells, hearing, feeling and overall emotions were at an EXTREME HIGH.

A lot of people don't understand what your brain is going through. Most don't know what to say and how to react. If you're a patient I highly suggest you turn your phone off, ask a parent or a close friend to handle all of your phone calls and apologize in advance to any stranger or friend you come into contact with. I was rude, swore, and I remember when people would call to check in on me I would either yell at them, cry, or ramble about useless topics. If you have social media, make an announcement that you're doing as well as can be expected and you need time to heal. Word travels quickly, if you're uncomfortable doing this, have someone close to you do it for you.  STAY OFF SOCIAL MEDIA

The best thing you can do to help someone with these symptoms is deal with it and don't take anything personal. Its not the patients fault, its the human brain reacting from a severe seizure, surgery, drugs, and natural human emotions. We all have brains, essentially they all are the same.

Acne

Within a week of taking the Dexamethasone, my body began to form acne and rash. Its a very common allergic reaction and I wouldn't be surprised if the next patient experiences the same symptoms. My rash occured around my chest, my stomach, and back. My acne continued to stay until 3 months after my last round of steroids. Invest in a back scratcher and some Aloe Vera.