Fully Loaded

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My Spinraza journey has been one of highs and lows. I’ve had laughter and joy— but, also some tears and anxiety. It’s been a whirlwind of emotion that has frankly surprised me. If my journey were a story, I’d say that each injection introduced a new plot twist. You know, a plot twist like a long-lost, evil twin brother in a really good telenovela? Or, a sudden beheading on Game of Thrones? Or the content of a press conference at Trump’s White House? Because, in all those examples, where you think the plot is headed is never where it ends up.

Earlier this week, I had my fourth, and final, loading dose of Spinraza. After these initial doses, I will just have to return to Stanford four times a year for a single dose to maintain the level of drug in my body. Like topping off a tank of gas. Only this gas is worth more per ounce than plutonium. Just don’t tell Kim Jong-un about this stuff. Knowing him, he’d probably try to fling a vial of it at Japan.

My dose last month went incredibly smoothly, as I documented here. I had a confident, gladiator doctor that had the needle in the target zone so quickly that I thought he was joking. After all, it ain’t easy to negotiate the long lumbar needle through my spinal rods, even with the live x-ray guidance. So, this time, I figured that world-record speed would be hard to beat.

But, I was wrong. Upon arriving to the radiology department at the Neuroscience Center, I was informed that the A-Team was going to do my injection that morning. I felt a jolt of excitement. I get the same feeling when I get a coupon for 25% off at Bath & Body Works.

When I met the doctor, it wasn’t Mr. Gladiator… Rather, it was like if Dr. Meredith Grey had suddenly developed an undetermined-European accent and appeared at my bedside. Her friendly smile and slightly wavy dark blonde hair were straight from one of my favorite TV shows.

She was calm, capable and prepared. And she had the needle inserted so quickly that I didn’t even feel one damn thing. Like nothing. Not a twinge. Not a zing. Like Robert Redford was to Horse Whisperers, she was to lumbar punctures. She was the Lumbar Whisperer. I think she should put that on her business card…

Doctor. Neuroradiologist. Lumbar Whisperer.

It has a nice ring to it.

It wasn’t long before I was ushered to the recovery area. Feeling so relieved to have the injection complete, I quickly guzzled some water and an entire caffeinated Mountain Dew to ward off any potential spinal headache. (Spinal headaches are a very common side effect of this procedure— and caffeine and hydration can help prevent it.)

It was all going swimmingly… until the nurse returned to take my blood pressure and the numbers too closely resembled the final score of a record-breaking NBA basketball game. The excitement and caffeine had hit my bloodstream like a locomotive— and my blood pressure proved it.

They told me to relax, which is the one thing that is impossible to do when you’re a hypochondriac like me. If you tell me to relax, the exact opposite thing is going to happen— I’m going to panic.

My palms began to get sweaty and I became convinced that I was going to have a stroke and die— taking my expensive plutonium-loaded spinal fluid with me to the grave.

They observed me for over 45 minutes, waiting for the blood pressure to reduce. Which, of course, it didn’t. How could it when I had 4 sets of eyes watching me and telling me to calm down?

It’s no surprise that I began to cry. All the stress from the last few months— the waiting for the Spinraza, qualifying to get it, all the insurance hurdles, going through the discomfort of getting the injections… all of it… it hit me like a wave, pulling me under. I bet Trump gets the same feeling each morning when he wakes up and realizes he’s still president.

Soon after that, the nurse took pity on me and let me go home. My relief was enormous. I don’t remember much of the drive back home to Patterson— I was in a daze of relief, exhaustion and, yes, joy, too.

For you see, I had done it. I had survived my loading doses. I wouldn’t have to do another injection again for 4 months. It seemed like bliss.

Stay tuned, though, for more updates on my progress… I will be chronicling everything here (lucky you!). Most of all, thank you for your support on this journey… it has meant so much.

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To binge or not to binge

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When you hear the word “binge” a certain image comes to mind. A troubled person indulging in large quantities of alcohol, food or drugs. In my case, it would be the pumpkin pie I obsessively eat from October to December each year.

The word “binge” actually means “to soak a wooden vessel.” It was important to binge a boat before sailing it, otherwise your voyage was doomed before it began – much like the Titanic, the Lusitania and Donald Trump’s presidency.

On a personal note, I actually know this to be true. My grandparents had an old wooden ski boat from the 1950s. If it wasn’t soaked or “binged” properly before taking it out on the lake, its ability to float was in question – making it a very stylish death trap.

Once, when I was 9, I was sitting next to my uncle John as he drove the boat. As the wooden boat started leaking in the middle of the lake, he threw me a teasing grin and remarked that the boat might sink. I still don’t think he was completely kidding.

In the mid-19th century, the clever chaps at Oxford decided to give the word another meaning. They began to refer to their alcohol-soaked shenanigans as “binges.” Thus, the word was granted new life.

Today, a modern use of the term has entered the English vernacular. It has nothing to do with booze, drugs or even carbohydrates. It’s about watching TV. Specifically, it’s about consuming numerous episodes in a row of a single TV show – for hours. Binging is sitting in front of your TV or iPad for so long that your pants begin to fuse to your butt.

Don’t pretend like you’ve never done it. The advent of the DVR and online video streaming services like Netflix have made this all the more common. It’s now socially acceptable to ignore life and sit in your pajamas all weekend and watch endless episodes of Grey’s Anatomy.

I recently discovered a great show on Netflix – BBC’s “Call the Midwife.” It has everything I love in a TV show – laughs, tears and snooty British accents.

To be frank, “Call the Midwife” is the reason you haven’t seen one of my columns in the Irrigator lately. A few weeks ago, the paper called me to see if I was available to write a column for that week. I lied and told them I was “super, super busy.” In reality, I wanted to scream: “LEAVE ME ALONE UNTIL I’M DONE WITH MY NETFLIX BINGE!”

Like most binging, I’m quite certain that this behavior isn’t healthy. It’s not wise to drink a whole bottle of vodka or eat an entire package of Oreos. So, it’s probably not a good idea to watch so much TV that your eyeballs begin to hurt.

But it’s so, so much fun.