Day 32.5: Where Was I?

2 Nov

Oh, yes.  There was stuff I was going to talk to you about, but we were so rudely interrupted by that nasty 24 hour migraine.  It turns out that those just go along with the territory and have nothing to do with MS, so I will just have to dodge them as I can.  Today’s migraine dodging was a little exciting because it involved a traffic jam in Moscow in which the van carrying my migraine medicine was involved.  Traffic jams are not exciting, but something about a traffic jam in Moscow, when life changing medicine is in transport, sounds like a cool movie and I got to have a small role in that movie.  We all know how I love a good drama.

Migraine is all gone and now we are going to talk some more about the science of HSCT and what it means for the long term treatment of patients like me and others who suffer from varying kinds of auto-immune dysfunction.

At its core, most auto-immune diseases are caused at the genetic floor.  This is where DNA sits and there is not yet a way to actually compromise DNA to remove that genetic floor.  This means that, like cancer, the disease can possibly reoccur, given the appropriate environment.  I don’t mention this now to be a total downer, but it is worth mentioning that, while auto-immune dysfunction can be stopped – sometimes indefinitely – it can also reoccur.

Dr. Fedorenko and I had a long talk about this recently, as he has a patient here for her second round of chemotherapy after six years of being MS free.  The variables are many as to what would cause this to happen.   He stressed to me that good diet and exercise were important, but he also seemed to feel that the stress of pregnancy was a great concern for relapse.  I have a lot of great plans on my radar, but that is not one of them.

This is not new science, and the numbers of people treated, and maintaining their lives disease free, are still being computed.  Many are holding strong at 15 plus years.  In my book, this gives me my kids’ entire time at home with me and a good many more, though I think we all know that I plan on being a “one and done” HSCT patient.  I never believed I was going to have MS forever and I feel certain that I am done with it now.

After today’s time spent feeling miserable, I was finally able to get up and get out for a bit of a walk with Eric.  It feels good to stretch out my legs and feel those stem cells, though they ache, course through my marrow and knit together a new immune system.  I continue to believe that I got here just in time and I look forward to the coming months and years as I learn how this new body works.

My blood count numbers continue to rise and there has been no hint that I will be in need of any kind of donor blood or platelet assistance.  In fact, Eric was able to give my head a nice clean shave today and the tiniest nick I received was resolved almost immediately.  It’s almost like I was made to come through this as a model patient, if I do say so myself.  (My eyebrows remain.  If I could high five them for their efforts, I totally would.)

I will continue to take it slow and easy.  My hickman line will be coming out tomorrow and I will spend a few more days in the hospital while that heals up.  After that, Eric and I will be going to the local hotel where we intend to continue carefully stretching out my new boundaries, without pushing myself too far and losing ground before we make the long flight home.

Thank you all for your continued prayers.  This has not been easy, but it has been so very important, and I know that my journey would have looked a whole world different without God’s hand on me and your prayers on my behalf.  I love you all.  Mean it.

4 Responses to “Day 32.5: Where Was I?”

  1. FergsMouseTrips November 2, 2012 at 1:35 pm #

    I like this post — It helps me better understand. Glad your migraine is better. Get some rest — big day tomorrow!

  2. Aunt Lori November 2, 2012 at 4:51 pm #

    Still here, reading every post. I can’t wait until you’re home from Russia. Love, love, love you

  3. Brooke Slick November 2, 2012 at 6:13 pm #

    So glad the migraine is gone! I’ve never had one, but have friends who suffer from them (nasty little buggers). Completely shifting gears…I wanted to let you know that you saved me a ton of money today. How? I am in the process of cleaning out our walk-in closet and when I reached the side that contains over 40 pairs of shoes/boot, that I had been completely prepared to throw out (all but the 3 pair that I’m still able to wear without doing a faceplant), I thought about you. I’m keeping those shoes! To replace them after a successful HSCT would cost a fortune! Not doin’ it! Nope! Not!! My next neuro appointment is 11/12/12 at UPMC Pittsburgh. I have already faxed my kind doc a checklist of issues I want to discuss, and HSCT is on it. I’m 5′ 2″ and 122 lbs. Should I start drinking shakes and eating Twizzlers now, or will my current body habitus suffice? ha ha ha

    • Janelle Jones November 2, 2012 at 7:13 pm #

      Ahh Haa after reading your post I am off to celebrate with a large slice of carrot cake in your honor!!!

Honest Truth About Me: I'm going to need a lot of cheer leading to see this through. Your comments and encouragement mean the world to me.

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