Thursday was a regular day. I woke up at 3:30am to get ready for work, knowing I had to be there early because of a meeting at noon. At this point the only worry about my day was how tired I might be in the meeting… but nothing a cup of coffee couldn’t remedy.
My meeting was at noon, planned to last 2 hrs then I had a haircut appointment at 3:00pm. After that was a 5:15pm doctors appointment for a follow up to an MRI I had last week. I was looking forward to getting home and seeing my kids, then playing some Portal 2 co-op. This was a pretty long day and I knew I would be tired, but I had a 3 day Easter weekend to recoup.
I went to work for a few hours, traveled to the meeting where I dozed in and out (damn coffee!) and left as soon as it was over… no time for corporate chit chat peeps… I got plans! I made it to my hair appointment just a tad late but we were done by 4:00pm. My doctor is right down the street from where I was, so I called them to see if I could come in early. YES! They said no problem! I might get this day done quicker than expected.
I was visiting the doctor for a follow up to an MRI, I should be in and out quick and off to see my family. I didn’t think much of it because I was the one that requested the MRI, not the doctor.
You see about 4 months ago I ran down the stairs and got really bad lightheaded feeling. It started as a normal lighthead spell, but stayed for a good few minutes and was much more intense. I felt like I was going to pass out. I eventually got over it and just excused it to the fact I had been out drinking the night before and never thought about it again.
About 6 weeks later it happened again. Same scenario about running down the stairs, but this time I hadn’t drank anything the night before. I again just dismissed it. I’m 29 and everything is fine… I just need to exercise more often.
So about a month ago, on a normal Wednesday like every other day, I had just left work and was trying to make a left at a stop sign to a street that doesn’t stop. I’m looking both ways trying to find my perfect opportunity and suddenly I get tunnel vision. I can’t gauge the cars, nothing makes sense, the voice on the radio is jumbled up and everything started to spiral around me. My right arm, leg and my entire chest started tingling and it started to remind me of a stronger version of what I had experienced a few months ago. You can think of these spells as “waves”, they start weak but get stronger then eventually taper off. But now these waves were coming back to back and wouldn’t stop. I had about 5 of them before I was coherent enough to drive again. All I wanted was to get home.
I started driving again and about 2 minutes later it all started again. Wave after wave, never ending. I didn’t think it was an emergency so I called my boss, who I also think of as a friend. I live 60 miles from home so calling my wife wasn’t an option, it would take her at least an hour minimum to get to me. I was just around the corner from work so this made the most sense.
He shows up and immediately started driving me to an Urgent Care facility near my house. Although these spells kept coming neither of us thought it was an emergency and was worth it to drive closer to where I live. Being closer to home is always the best feeling.
We get to the Urgent Care and my wife is waiting for us. They send us to the ER down the street where we finally check in. After an hour of waiting, blood tests, EKG and other test they send me home with a white pill for anxiety and tell me I was having a panic attack.
Bullshit! I know myself. I manage stress well. I know how to organize my day and methodically go through all my responsibilities without allowing myself to get overwhelmed. But the ER doctor insists I was having panic attacks. He gives me printouts of all my reports and tells me to give them to my primary physician.
I set up the appointment with him, hoping to get real answers, but when I finally meet with him he jumps on the anxiety bandwagon. Prescribes me a bunch of pills, schedules me a follow up in 3 weeks then sends me on my way.
I’m furious at this point. You have to understand… I eat very healthy: loads of fruits and veggies, organic foods, no sugars or sodas and I drink water and green tea all day… and I HATE taking pharmaceutical pills.
But if it is what hes telling me, I better take this medicine. So a few days go by and I’m still getting these attacks. On average I get about 6 to 10 a day. But after that day I went to the ER, they changed a bit. My right arm would get heavy and numb, along with my left leg. I get a weird taste in my mouth that I can only describe as a metallic flavor. But the weirdest shit of all is the right side of my face would smile uncontrollably. I felt like Two Face from Batman. In public I tried to cover it up by smiling the rest of the way and cracking a quick joke to laugh at, but I had a hard time articulating sentences or even comprehending what others were saying…
So I live with it for the next 3 weeks until my follow up doctor appointment. When I get there and tell him they haven’t stopped, he just wants to change my medicine. I beg him for an MRI on my brain to which he finally agrees. About a week later I go in for the MRI and start the waiting process for the results.
That brings us up to Thursday.
When I walked into the doctors office and checked in, I knew something was wrong because the ladies behind the counter all started getting mad at me stating they had been calling me but I didn’t ever answer. Not sure what number they had but they NEVER called once.
I sat down in the waiting room and messaged my wife something like “I’m worried, something doesn’t seem right”. My feelings were spot on. Once I got into the doctors office it went something like this:
Dr: Hey, how are you?
Me: Good, still dealing with this.
Dr: So I got the results… things uh… they didn’t come back good. They… uh… they found something
Dr: There is a large, aggressive mass on your left temporal lobe, sitting on the part of the brain that controls speech.
Dr: I recommend going in for another MRI with IV Contrast and speaking with a neurological specialist…. blah blah blah …
At this point I realized my doctor was out of his league. He had no idea what he was talking about, didn’t even have someone to recommend me to. I started to zone out; thought about my life… my family… my children… how my wife would take it.
It hadn’t even sunk in that this was happening to me. It felt surreal. A dream. A terrible dream.
I called my wife, my parents and informed my boss I wouldn’t be in tomorrow. Then I sat in my car and cried.
I finally drove home and by that time everyone was there waiting for me and we just spent some time together. We discussed options, doctors, plans and anything else that came up. I felt emotionally drained and finally went to bed.
I woke up early and my first thought was “a dream?”. So when I went downstairs I didn’t bring it up but the first thing out of my wife’s mouth was “I’ve been on the internet all night and doing research, I just got off the phone with a neuro surgeon, he says you should have never been sent home from the doctors and you need to go to the ER right now”.
Not a dream.
So that brings us up to yesterday. I sat in the ER for 8 hours waiting for the neuro specialists to review my MRI and wait for a room to open upstairs in the neuro critical care area.
The plan is to have a crainiotomy, open a large portion of my skull, and remove the mass as much as they can. After they have it out they can test it for cancer, but until then it remains unknown. The risks include being paralyzed on my right side (because the brain sides control opposite sides), speech cognition and my ability to speak issues, infection or even death.
UPDATE: Actually just after I typed that last paragraph my surgeon just visited me. He said the tumor is sitting 95% on the speech area and he?s worried that if he takes out too much I wouldn?t be able to speak at all. He wants to take out as much as he can but with the least complications. Once we know what it is, the rest might be able to be treated with radiation.
The last 2 days have been a really wild ride. I’m sitting here in my bed, just got back from my second MRI and waiting to hear if my operation will be today or tomorrow. I?m on the standby list, so they won?t let me eat just in case I do actually go in today.
Its scary. I don?t want to lose my ability to speak or understand people. I want to be able speak to my children and give them advice, have conversations with my wife, or even tell jokes. Its fucking scary.
I don?t know why I?m sharing this… I feel like I want to get all my thoughts out before I might not be able to anymore.
I hope this isn?t my last time communicating, but you never know. I?m keeping my thoughts positive but remain realistic in my approach.
If I come out a different person, I want everyone to know that who I was, was a good person. I may speak harsh, tell crude jokes or even give you a hard time. But deep down I care about everyone and wish the best.
I love my family, my friends, my parents, my brother and sister and my children. I don?t think they know how much they mean to me.
I posted this on Twitter last night, so I?ll share it here too: I have no idea how things will turn out, so I?ll leave you all with this…
see you guys on the other side 🙂