GET THIS

MOMandDAD

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?

Go-time

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Ok fam it’s go time..

My blood counts started rising (a big celebration for us stem cell patients!), so can you join me in praying specifically for my WBC to shoot all the way up to 1.0 by sometime tomorrow?! That’s what is necessary for my discharge, which we’re all (us & medical team) hoping/expecting to occur tomorrow. But it all comes down to that WBC getting to 1.0!

The Dreaded MRI

Our first week here in Chicago consisted of basic medical tests to make sure my body can handle the transplant. Keith and I spent the week running around the hospital and various buildings each day. I had a bunch of tests on Thursday–MRI, chest x-ray, dental eval, labs & EKG. It all started with the worst–the MRI. Well, technically 3 different MRIs, so about 2 hours total.

Over the years MRIs have become really difficult because it causes a tremendous amount of pain trying to lay perfectly still for an extended period of time. It’s the worst. The technician often tells me I’m moving and they have to repeat a scan, (or 3 :/). The reason I move—and I try my very best to NOT move at ALL—is because my body gets so stiff and tense trying to lay perfectly still, and the pain slowly builds to new levels each until I can’t take it anymore.

I’ve developed a variety of methods to help me cope through MRIs—basically anything to distract me from the pain… Listening for all the different tones. It’s interesting to listen to both the wretched dissonance and the quirky harmonics of the machine. Also, the incessant—and nearly violent—rhythm of magnets clanging around for the various scans. I try to find some sort of imperfection from my span of view inside the machine. There’s usually a scratch or smear you can find, or some sort of mark on the interior surface. You can try to imagine what different shapes the mark could be, like you would with clouds in the sky. Really, MRIs are awful for me, no matter what I do.

But this was unlike any MRI I’ve ever had!

When they were escorting me back to radiology the technician explained I’d be able to listen to music during the MRI scans. (Uhhhh, what?! HOW!) He explained they had a pair of all plastic headphones that doesn’t interfere with the scans and allows them to play music for patients. (!!!!?!??!?!?!?!) When I was all set up with my IV, a blanket and the headphones, the bed started receding back into the machine and he asked what Pandora station or artist I wanted to hear (!!!!!!!). I said, “Yes, an artist–Keith Elgin.” The MRI machine was up and running a minute later with its raucous noises.

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After another minute the voice of the love of my life floated above reality as I heard “Stronger” start to play through the headphones. I lay there in this entirely surreal moment, filled with total peace and comfort. I thought, “Wow. This is happening.” By the time it really hit me around the first chorus, tears were streaming down the sides of my face. These were the kind of tears that didn’t stop—the experience of being so overwhelmed by emotion that your body takes over and decides to cry, without your knowledge or permission!

Then I was laughing about how I couldn’t stop crying,
and how unbelievable all of it was…

 “Stronger” from Our Hope [Live] by Keith Elgin.

A few songs later was “Dance, Dance, Dance,” at which point I was grinning ear-to-ear inside that machine… I was picturing Chloe, our fabulous 4-year-old niece, breaking into super-energetic dance and singing along! Such happiness :) She calls it “The Keith Song.”

At one point (well actually I think it was 4 times total) the technician buzzed in over the speaker saying he had to repeat some scans because I had been moving. I always feel bad about that because it’s annoying for them and it takes longer, but I really do my best. He got more grumpy each time, so I felt more and more like a fool, apologizing. Then it turned out he had to leave and got another radiologist to cover for him because it was running into his dinner break. So when they wheeled me out of the machine to put the contrast in my IV, this new radiologist greeted me and explained.

She was cheerful and kind, with a gentle spirit. She took care to update me between each of the scans, encouraging me and saying how long the next one would be. She also gave me breaks and explained what parts of my body I could move. She regularly asked how I was doing.
It was like an angel had arrived to run the MRI.
And her name was no coincidence—Gloria—like my mom.

So I got to finish up this 2-hour MRI listening to my husband sing about God and feeling the loving and caring presence of my mom.

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Some thoughts & reflections from inside the machine:

Wow…
This is unbelievable…

…fragmented thoughts of bewildered gratitude, trying to wrap my mind around the astounding love of God…

Is this real? This is really my life?
I can just say my husband’s name for a Pandora station?!

And, go out to that same guy in the waiting room, who’s eager to see me and find out how this one went?
The waiting room of Northwestern Memorial Hospital…
But this time we are getting the transplant?
It’s really happening…

And everyone we know is in it WITH us…

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From all around the U.S., hundreds of our best friends, family members — and many we’ve never met – helped us get here.

And made all of this possible.

By the provision & crazy love of God.

Appt at Rush University

Screen Shot 2013-11-09 at 7.09.23 PMI‘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 :*)