Friday, June 23, 2017

Disappointed, but not in despair

Well that did not go as any of us hoped. The radiologists had trouble finding an injection site where they could draw spinal fluid and inject the drug. Three different doctors attempted three different angles, and multiple punctures over two hours, with no success.

And it hurt. A lot. I went into the procedure knowing that it would. Like Westley from The Princess Bride, I figured I could "cope with torture" - especially if it was brief and successful. I expected it to take a few minutes, and that I'd be out of there in an hour, with a miracle drug flowing through me. But after an hour of unsuccessfully poking around inside me, I started to moan, then cry. My resolve was melting. I gritted my teeth and gripped my pillow and tried to think of Captain America and Westley, and begged God to guide the need to the right spot so this could all end well.

But He didn't. With every new poke, I became more disappointed, discouraged, scared, frustrated and angry - not with the doctors, but with God. After all, my hope had been in Him, and now everything that hurt seemed to come from him. He'd gotten me into this, but wasn't getting me out. I felt abandoned and alone. Another hour of pain dragged on before I said I didn't want to continue (the doctors had been willing to try as long as I wanted).

The doctors decided the best next step would be to get a CT scan, for a clearer image of my spine, so they could regroup and work out a new approach. They took me right in for the scan while I was there, and the staff kept telling me how brave I was. But I didn't feel brave.

I felt weary and raw, but deep inside I knew that my attitude and perspective was wrong. God heard me, saw me, and loved me like he always has, and just because he didn't do what I wanted him to do, when I wanted him to do it, doesn't mean he isn't in control and isn't working it out. He is, and he will... I know.

The CT scan results came back today, and the bottom line is that there is just no space between my vertebrae to put the needle in, because of my fusion. The needle was literally hitting an impenetrable concrete wall. The radiologists are not going to be able to do the injection. But my neurologist is awesome, and has not given up yet. And I don't think I've given up either.

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.