My parents flew in today, and were very cautious to not catch anything on the notoriously germy plane ride. Thanks, Mom & Dad!
[Keith is flying home tomorrow to be back for Christmas Eve (kind of the Super Bowl when you work at a church so he totally has to be home)].
AND GET THIS… Part I: I’ve been quietly aware of having stopped using my left hand/arm for anything (Had a flare-up earlier this year when I lost the feeling & coordination there). I was painting yesterday & using a messy/painterly style.. And just started precisely smearing w my left hand.. Regular brush stroke w my right and smear w my left. It was like my whole arm woke up from a coma. Was so blown away and feeling like a true miracle. The first “whoa”
Part II: When we were telling my parents about this tonight I remembered another thing from my flare-up earlier this year… Based on where the new lesion was in my MRI at the time, my neuro showed me how when I quickly dropped my chin to chest I’d get an electric-shock-type of feeling down my spine + left arm. [Been that way ever since, of course #mssucks]
But tonight I couldn’t make that happen. No matter how many times or how quickly I did it. It’s gone. What a tangible display of healing… I’m still processing. And how could you not cry, explaining that to your beautiful, also-teary-eyed parents?
After 2009/the first year of MS and having high-dose IV steroids about every 6 weeks, I’ve since objected to steroids unless the circumstances are unlivable.
[Because the steroids themselves are their own kind of misery.]
We saw Dr. Burt today before everything starts next week and he said I should do a few days of steroids before the mobilization chemo on Monday. I said ok.
That’s when everything starts heading “downhill,” so why not precede it with a few rounds of steroids if that will help? If the doctor says so, do so. And #thatswhathesaid.
Gotta be #allin at this point! (at Galter Pavilion – Northwestern Memorial Hospital)
I‘m always instructed to wear a head scarf and paint my nails black before my appointments at Rush, in order for the neuro on the other side of town to stay blind to whether or not I was in the treatment arm of the study vs. the control arm… Meaning, whether or not I had lost my hair or had obvious signs on my nails from undergoing chemo.
I’ve been a patient in the Multiple Sclerosis stem cell transplant study at Northwestern for over 4 years (awhile after we heard about it on the news), but I was randomized right off the bat to the control arm, so we flew right back home.
BUT a patient has the potential of crossing over into the transplant/treatment side of the study if his/her original EDSS score (scale that assesses the level of disability) increases by a certain amount, AND stays that way for at least 6 months. We all knew my score would be bad enough this go-‘round, but still, it all officially hung in this morning’s appointment. If the doctor assessed my score at the same level as in 2009, we would come home. Again. And it would be the biggest “never mind” of our lives.
I sat there answering his questions, doing the various exercises for him to examine my level of disability, and listening to him explain to the interns why I wasn’t capable of doing certain, very basic movements…
It totally caught me off guard when I started crying. It’s like my soul alerted my mind, “This is huge, Emily. You guys have been trying to get here for 4 years, and it’s happening right now.” The reality of it—and a sense of peace—overwhelmed me.
Dr. B handed me the sheet of paper with my score, which was more than high enough. Double my 2009 score. So it’s all a “go.”
“Full speed ahead,” as the nurse said who called me later to find out the news.
I’m full of gratitude tonight—gratitude in too many directions to process, so, now it’s time to sleep :*)