I had my 7th dose of Spinraza this week. You’d think I’d be a pro at this by now— but, unfortunately, receiving a complex lumbar puncture isn’t something you can train for… unlike a marathon or a really competitive game of backgammon. I actually don’t even know how to play backgammon, but it sounds like something that sophisticated people would do. Like playing bridge. Or committing white collar crimes.
Anyway, when you have a wonky and complex anatomy like mine, each injection is its own story. Its own event. A prior injection can’t, in any way, predict the outcome of the next. Just because one injection was easy, that doesn’t mean that the next can’t be a fucking disaster. I’m sure if you’re the parent of a toddler you will completely understand this concept. After all, while your child may behave on one trip to Target, that doesn’t mean that the next time he won’t pull an entire display of Febreze on top of his head.
As I shared on this blog previously, my last injection was a challenge. So, I went into this treatment with open eyes, and the reasonable expectation that there could be copious tears at some point in the day. (Just hopefully not the doctor’s.)
Anyway, the drive to Palo Alto was decidedly uneventful— the sky shifting from Central Valley smoke and haze, to a Bay Area overcast. But, as we got off the bridge and arrived to the Neuroscience Center, the morning sun opened up and a cool, slightly crisp (dare I say, even fall-like?!?) air met my skin. If you know me, you’d know how much I love the autumn. So, I tried not to let this omen get my hopes up for how the day would turn out. I told myself, “Elizabette, calm down. There’s still plenty of time for you to be the kid with the Febreze on their head.”
While waiting for the procedure, a research associate came and asked me if they could save the spinal fluid they collect from me for scientific purposes. I clearly like science, so I signed the paper and said YES. After all, it’s not like I am going to take my spinal fluid home and put it in a jar by my bed. That would be creepy. Besides, I have no room for it on my nightstand, anyway. That’s where I keep all my photos of George Clooney.
By this point, I really started to have to pee. As I have to hydrate a lot in the days before the injection, my bladder was holding a crap ton of urine. When I say that, I’m actually not kidding. Lucky for me, I think I was given the bladder of a much larger primate. Like a gorilla. Or Tom Hanks from A League of Their Own. You know that scene in the movie where he takes a drunken piss in the locker room urinal? And his pee goes on for over a minute? Yeah, I can totally do that.
Anyway, I was secretly hoping that the research associate would hurry up and go away so that I could get to the point of the morning where I got to use the restroom. If she didn’t skedaddle when she did, I would have probably signed away my own pancreas just to get her to leave. I think I could have found a way to make due without it.
Thankfully, it didn’t come to that, so I was able to go empty my mega-bladder in fairly short order before being taken back to the procedure room. After I was laid on the table, on my left side, the doctors began taking measurements on my back— to try to locate the ONE open spot in my spine. The only part that isn’t obstructed by the two scoliosis rods nestled along my vertebrae. They fired quick x-rays to line up their needle approach.
Watching the big fluoroscopy machine as it swiveled and swung around me, gathering images, and listening to the doctors strategize on their game plan, I started to feel a rumble in my stomach. Even though it was only 10am, lunch was beginning to sound really good to me.
Thinking about food is one of my favorite things to do. In fact, I daresay I like it even more than pumpkin spice lattes and making jokes about Donald Trump. And that should say a lot since I like those things VERY much.
It shouldn’t come as a surprise that, at this point, my mind began to wander. So consumed by the thought of food, I didn’t notice the giant needle slide into my spine and the sting of the lidocaine that numbed the passage. Instead, I imagined the In N Out Burger that I suddenly wanted to eat. And the stack of smothered “animal style” fries that I would get along the side. Over the scent of hospital antiseptic, I could taste that damn special sauce that I love so much.
It wasn’t long before I started drooling on the sterile pillow. I wish I could say that I made this last bit up, but I didn’t. I literally left a puddle on the light blue fabric. It was kind of gross.
Anyway, so distracted by my thoughts, I gave a jolt when the needle penetrated into my spinal canal and a zing of cold sensation flew down my right hip. Immediately afterward, the attending doctor proudly announced, “Here it is” as my spinal fluid dribbled out of the needle— evidence of the procedure’s success. They collected some fluid (for their aforementioned research purposes) and then injected in the Spinraza.
Seconds later, the procedure was done and the needle was out. Dazed by the speed with which it had all happened and still in a haze of pickles and grilled onions, I asked, “Wait, how long have I been here??”
The nurse laughed, “Only about 20 minutes. This is a record time!”
I was thrilled. I was definitely NOT going to be the kid with Febreze on their head this time. My stomach grumbled loudly, again, sensing that lunchtime was suddenly going to be a whole lot sooner than usual.
They helped me off the procedure table, and as they wheeled my bed back to my room, the nurse asked, “So, what are you going to do with the rest of your day?”
It was the question I had been waiting to answer.
“I’m going to In N Out!”