Thursday, August 17, 2017

Second dose!

This afternoon, I received my second dose of Spinraza. I went to the hospital a little early, to do lab work, and then headed down to the neuro clinic. Honestly, there's not much to say about the actual treatment time - the drawing blood in the lab felt more traumatic than the needle in my back. I think that is mostly due to the shunt/reservoir placement, which makes access so much easier. Plus, I have a really wonderful neurologist! It went smoothly and took less than five minutes, I was in no pain, and I'm feeling good this evening.

People have been asking me if I feel any different yet, and I can't honestly say that I do, in terms of strength and mobility. I wasn't really expecting to this soon, though, and I'm trying not to over-analyze any bursts of energy as part of the healing. I think the work that is happening right now is the slowing down and stopping of the progression of the disease... which in my imagination looks a lot like Superman stopping a plane crash:


Pretty insanely epic, though hard to clinically measure or physically feel. However, I will let you know if I notice my superpowers evolving in the future! ;)

I was remembering that when I was in the neurosurgical unit at the hospital, there were quite a few doctors, nurses, and other medical professionals who knew very little about, or had very little experience with, SMA... which at first seemed weird, since it is, afterall, a neuromuscular disease. But then I realized that it's probably because there hasn't been a neurological treatment for SMA until now. Before Spinraza, SMA patients were primarily seen by orthopaedic specialists, because the main plan of care involved physical therapy... and even that was focused on children, not adults. I haven't had formal physical therapy in fifteen years. This new drug is really going to shift some things in the medical world!

Today, my doctor said that the neurosurgeon who placed my shunt is getting ready to do the same procedure on another adult SMA patient soon, and they are even talking about building a special program at the hospital to provide this option to other similar patients. Can you imagine?? And I got to be the first one! They must be pleased with the results, if they want to do it more. I feel so honored to be a part of blazing that trail.

Saturday, August 12, 2017

"Failure is not a problem to be considered!", or "How to manage headaches"

It's been quite the week for me, and not in the typical "amazing life of Connie Chandler" kind of way. Headaches have continued, along with nausea, aches and pains, exhaustion, apathy and emotional battles. Multi-level discomfort has a crude way of chewing up and spitting out joy and hope in a broken, soggy, sloppy mess. Needless to say, I have not been myself, so I've intentionally stayed away from blogging so as not to depress you all. But I'm back now!, which must mean...

I finally feel myself coming back! 

My neurologist has been pretty wonderful this week, calling me daily to check on me and talk through my symptoms. She basically put me on bed rest for the week, telling me I was overdoing it and I just needed to slow down and try to let my body heal. My worst headaches have been in the morning when I go vertical, and she said there may be some fluid leakage around the shunt in my spine that is causing that. Since the headaches seem to be gradually improving (shorter and less severe each day), she's hopeful that it will heal itself, if I don't put too much strain on it this week. She also ordered some nausea medicine for me, and talked to me about the importance of taking pain medicine at regular intervals (rather than waiting until it's unbearable). Oh yeah, and she said caffeine is good for headaches, too. 

So, for the past three (incredibly long) days, I have been laying down, binge-watching "Chuck," reading books, listening to music, and taking my meds like a good little patient. I must also say I've had some exceptional company, too - thank you to all of you who have come by to eat with me, hang out, care for me, pray with me, and spend the night with me. You have kept me from going crazy, and reminded me that I am not alone in this.

This morning, my initial bad headache only lasted about 10 minutes, I had a delicious cup of Earl Grey tea, and then I realized that I feel different - but in an old, familiar way. I feel more like myself - happier, more energetic, stronger, and more focused. I celebrated by playing a round of "Words with Friends" on my phone and beating EVERYONE. (Maybe not everyone, but it felt like it!) Also, I celebrated by writing to you. (Don't you feel special?) I'm still going to take it easy today and tomorrow, because I begin work next week, and would like to be at my best. But it is encouraging to feel the joy and hope reviving in me. 

I mentioned emotional battles, and one of the biggest is doubt and fear. Did I make a huge mistake in all this? There have been so many moments in which the solution seemed obvious - just quit while you're ahead, it's not worth it, and no one would blame you if you backed out of this now. Failure has felt like a reasonable option this week, and that is scary. But the other day, Kevan read to me over the phone - he read "The Snow Sand" scene, from The Princess Bride. It is one of our favorite parts of the book, and we often read it to each other in times of distress. It's too long to write it all out here, so I do recommend you get your own copy to read (this scene is nestled in the middle of chapter 5), but I will end this post with just a few lines from it that have helped me through the difficulties of this week: 

"To release the vine was truly madness. There was no possibility of forcing your body all the way back up to the surface. A few feet of ascension was possible if you kicked wildly, but no more. So if he [Westley] let go of the vine and did not find her [Buttercup] within a finger snap, it was all up for both of them. Westley let go of the vine without a qualm, because he had come too far to fail now; failure was not even a problem to be considered... he reached out blindly with both hands now, scrabbling wildly to touch some part of her, because failure was not a problem; failure is not a problem, he told himself; it is not a problem to be considered, so forget failure; just keep busy and find her, and he found her..." 

Through Christ, I am strong and courageous and victorious - even as I lay on my back and wait for equilibrium to return, I remind myself that failure is not a problem to be considered - press on and don't look back! The adventure continues ahead! 

Sunday, August 6, 2017

Three days later

My first couple days of recovery were pretty good. I mean, I was tired and in some pain, but no more than I really expected. But today was different... today was not a good day.

I have been trying to wean myself off the hydrocodone pain meds, stretching it out to six or seven hours between doses yesterday, and then being able to sleep through the night last night without it. When I woke up this morning, I had a feeling I'd be sore, and I was, so I took some more medicine before I got out of bed. As I was getting dressed, my head started to ache all over, so I could hardly stand light or sound. The doctors said I would likely experience headaches because of the loss of spinal fluid, and that laying down would help. So I reclined in my chair for a while and felt better. I decided to get up and have some breakfast, but the headache instantly came back and worse, I felt nauseous.

From there, the day got worse... getting sick multiple times, having migraines, sleeping it off, not having energy for anything else... it's about as close to experiencing morning sickness or chemo side effects as I can imagine. I don't know how accurate that is, and I'm truly sorry to those who have endured those things and know I'm not even close, but it makes sense to me - I have this foreign object inside me, and a new cocktail of medicine that I've never had before, fighting against an enemy I've been tolerant of for 32 years. Who knows what's happening today on a molecular level with my body?

As the day ends, I'm feeling stronger and more stable. I've switched from Hydrocodone to Extra Strength Tylenol. I'm not nauseous, and my brain doesn't feel like its forcing its way through my head anymore, so that's good. Mom made my favorite homemade cookies, Dad worked a crossword puzzle with me, and we watched Anne of Green Gables, so body, mind, and soul, I am much improved.

Kevan sent me this quote tonight, from J.M. Barrie's book, The Little White Bird, which he said reminded him of an interaction between me and God right now:

David: "Is it going on now?" 
Barrie: "What?" 
David: "The adventure." 
Barrie: "Yes, David." 

I don't know if my pain and sickness today was due to the surgery, the drug treatment, or the pain medicine, but whatever the cause, I know it was just part of the journey - part of this adventure that God and I are taking together.