Monday, June 4, 2018

Dose #6 of the Super-Soldier Serum

Today I got my sixth dose of Spinraza - it's been 10 months since I began this journey with the first dose!

The lab work was a success - as in, it only took three attempts to find and retrieve two tubes of my platelets... So that's good, right? I think I'm becoming notorious around the lab. The lady who called me back actually remembered me from four months ago, and promptly rounded up three other phlebotomists to assist her. Special thanks to the one who gave me a "Skylander" Band-Aid, and major kudos to the feisty little lady who stabbed me fearlessly and wouldn't take "No" for an answer from my shy and elusive veins. I saw my neurologist on the elevator afterward, and observing my multiple bandages and bruises, he casually said, "So... I see you got your labs done." Mom treated me to a cherry danish and tea afterwards, which is becoming my regular post-blood-draw reward for NOT crying or biting anyone. Overall, not a terrible morning.

Three hours later, I was in Diagnostic Neurology, signing my name in acknowledgement that this treatment could result in headaches, bleeding, infection, or DEATH. My doctor is always quick to add that the "death" part hasn't happened to any of his patients so far, blah-blah-blah... I waved him off and signed with a flourish. Please, give me this moment to face Death and feel just that brave! Again, that epic scene from Captain America flashed through my memory, and I smiled as I told myself that it's "super-soldier serum" time. I was really quite proud of how cool I was being about the whole thing.

From weakling: Chris Evans stars in Captain America: The First Avenger as a scrawny man who is transformed into a muscle-bound superhero. Scientists now believe they can replicate this over a period of months with a growth hormone

One more hour later, and I'm laying on my side, facing a taupe-colored wall ("They say taupe is very soothing"). I can't see what's going on, and no one is giving me any verbal hints. I know there's a small needle in my lower back, and we're somewhere in the process of either sucking out cerebral spinal fluid or injecting Spinraza. It doesn't hurt me at all... I felt the initial stick of the needle, but honestly that is it. My doctor is very careful and cautious and takes his time to make sure everything goes all right, so I just need to lay still and stay calm and not be the annoying kid who keeps asking "are we there yet?". So while I try to find patterns and count the various shades of brown in the wallpaper, I reflect...

Last year at this time, I was still in consultation mode with the neurologists. Lots of unknowns, but also lots of optimism. I knew there would be risks, but I didn't know how complicated, long-term, or painful it would be. The past year has been quite a roller coaster ever since... as the Lord uses this medicine to strengthen and sustain my body, he seems to have a correlating (if not increased) interest in the condition of my heart... to remind me to find my strength, purpose, joy and hope in Him. Again and again, he proves himself almighty and faithful to me.

Today's treatment went well, with no problems. I had a little trouble with my breathing shortly afterward, and felt tired and emotional the rest of the afternoon, but the doctor thinks that's all due to stress relief... I guess I was more anxious and stressed out beforehand than I wanted to admit. But all in all, I'm curious, and yes, even excited to see what happens in my life in the next four months before my next injection... I'll be sure to keep you posted!