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Second trip to Chicago
July 31st, 2015
I leave for Chicago on Sunday.
So, I should get back to this journey. Fast forward to June. My insurance approves the set of preliminary tests to see if I am healthy enough for a stem cell transplant. They have not approved the transplant yet — and will wait to see how these tests go. Echocardiogram, EKG, blood tests galore (17 vials worth), a meeting with a psychologist. First I have Scott and Mark’s wedding (LOVE WINS), then a Girl’s Weekend of Evil (GWOE) with a group of girlfriends in Colorado. We’re not very evil, unless lolling about, making delicious meals, and drinking wine is evil. Then we’re top notch.
Here’s a picture of us.
Then Chicago. I need to decide if I want company for Chicago. I only have one meeting with Dr. Burt. I think I can do everything else on my own, probably all of it. I ask my friend Nina if she thinks I should go with someone, and she says, “I’ll go.”
I tell her I’ll think about it. This won’t be a fun trip, and it seems like a lot to ask. I check in with Chris to see if he is willing to go, but first I say, “I don’t really need you to, just that you’d be nice to have, but I can do this on my own. We could go to a fancy restaurant?”
Turns out, it would be complicated for him to go this time. Plus I said I don’t need him. And he’s going for the August and September dates. I wonder if I should go alone and treat this like a writing retreat?
Nina texts me out of the blue: “You know I like your company.”
But what if I want to curl in a ball and just be alone? What if I get the opportunity to work on my book?
I talk to Joey about it. She tells me that going alone is a recipe for me being lonely and sad, and that I should stop being a dumbass.
So, I ask Nina to go. If Nina lived during the time of the Salem witch trials, she would have been burned at the stake. For sure. She’s too smart for mere mortals. She has big ideas and she shares them, plus her hair comes straight from the sun: long, red, and curly. She’s good company, though. I know this from long, lazy afternoons on a blanket in her yard, watching our children and her chickens, and solving the mysteries of the universe.
I book a flight for us. I don’t need an extra ticket for my ghost of secondary progressive MS, although it still haunts me. It’s bigger because it’s feeding on my fear that insurance will say no.
Nina talks to me about calculus, the murmuration of starlings, neuroscience, and changing the way people learn. Like I said, she’s good company, and my ghost and I listen and ask questions.
I’m pleased to show her that I know the way on the metro, but then we get lost and can’t find it, and she has to figure out where to go. I still bumble getting us train tickets, but I get them. We get to the hotel, go out to eat, and I fall asleep by 9:00.
Nina walks me to my first appointment, meets me for lunch, and goes with me to see Dr. Burt.
I ask him about secondary progressive MS.
“Has somebody told you that you have secondary progressive MS?” Dr. Burt asks.
“No, but nobody’s told me that I don’t have it either.”
“Why are you worrying about it?”
“Because I read in your paper that this doesn’t work in people with secondary progressive MS. No one will say one way or the other whether or not they think I have it, and I fit the profile.”
“Stand up. Let me look at you.”
I stand up. He looks at me.
“You don’t have secondary progressive MS,” he says.
“How do you know?”
“If you did, that leg would be spastic.”
“This leg gets spastic sometimes, like, when I put it in cold water.”
He shakes his head and waves my worry away. My ghost is unfazed. It will take more wind than that to dissipate it.
In the lobby, Nina says I totally nailed that appointment and she hugs me. She says I seemed like a person to be taken seriously, and this pleases me. She walks me to the psychologist, who wants to know if I have a support system. Why, yes. Hell yes.
She asks me what the hardest thing I’ve ever had to go through is, and I draw a complete blank. I’ve got GWOE, climbing, a great job, wonderful friends, and a lovely family. I’m mostly the luckiest person in the world.
test Filed under Stem cell transplant for MS | Comments (12)
12 Responses to “Second trip to Chicago”
You might recall my observation made during your teen years that you did not appear to have the sense that God gave lettuce. I forget the difficulty at the time. You’ve proven me wrong so many times that I’ve lost count, and you continue to do so. Keep charging.
— Dad
Yours is an extraordinary story, Karen. Love reading this. Good travels and outcomes.
I’ll be following along! Safe trip up.
xo-Jenny
You warm my heart! Gratitude must be contagious! Love, Laura (Go Karen!)
Where’s the “Like” button on this thing??
Safe travels Karen. We’re all there with you in spirit!
Hugs,
Janet
17 vials – wow!
Your dad and I are sure rooting for you! Bon voyage! Lots and lots of love and great good wishes, Mom
The universe is holding you in the palm of its hand. I love you.
You’ve probably already seen this article, but FWIW:
Onset of secondary progressive phase and long-term evolution of multiple sclerosis.
Scalfari A, et al. J Neurol Neurosurg Psychiatry. 2014.
Male sex (HR=1.41; p30 HR=0.52 (p<0.001), 0.65 (p<0.001), respectively) and high early relapse frequency (1-2 attacks vs ≥3 HR=0.63 (p<0.001), 0.75 (p=0.04), respectively) predicted significantly higher risk of SP MS and shorter latency to progression.
Karen, I’ve been traveling with you for the past week, at a conference and sneaking peaks at the blog every chance I could get before being kicked offline or rudely interrupted for something work-related. You’re as good a traveling companion as ever, though it would be far better to see your face in person and hear these words coming out. Now I understand the what, the why, and some of the how, and I see you’ve got this. As long as we’re all recalling words of wisdom, I’ll always remember what you told me when teaching me to climb in college: Stick your butt out and trust your shoes. (Can you use that now?)
Call or write to me anytime. Much love, broccoli and all things delicious and nutritous.
Another beautiful post, Karen. Ever since I met you you’ve been teaching me more beautiful ways to see the magic in the world – even still.
I,VE had BREAST cancer, spinal fusion, a pinched abdominal nerve I live with and bipolar depression in addition to my ms…to cure my ms would be earth shattering…I,m hoping girl!