Wednesday, June 21, 2017

Super soldier time!

Tomorrow is my first treatment dose! I'm supposed to be at the hospital at 8:30 am for lab work, and at 10:30 am I will go to the radiology department, where the doctors will use a fluoroscopy X-ray machine to monitor where they are inserting the needle.

See, like many other SMA Type 2 patients, I had back surgery at ten years of age - two L-shaped metal rods were placed on either side of my spine, as well as spinal fusion. I had this surgery because of extreme scoliosis, which for me was C-shaped. So because of the curve of my spine and all this "hardware," the lumbar puncture was not going to be easy, to say the least. The radiologists and neurologists have consulted together and come up with a plan of action that we all feel good about.

I can't help but think of that movie scene, when Steve Rogers is transformed into Captain America. This weak little nobody gets genetically altered into a powerful hero. I know that isn't what is going to happen to me - I mean, I know I won't instantly walk out of a steaming chamber with a perfectly sculpted body and superhuman strength... But I honestly don't know what I will experience. Will I feel any different? Will I notice any change? How will my body, mind, and spirit respond to this real-life genetic alteration?

I haven't allowed myself to dream too big or expect too much... there is so little known, and I don't want to jump to conclusions or have false hope. I have a strange sense of calm about tomorrow.

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