…Being of Sound(ish) Mind…

3 Jun

When I read and studied prior to my trip to Moscow, I often saw the time frame for recovery of 12-18 months.  In my MS riddled body, I read that as 12-18 months to recover whatever I could from the MS.  What I did not read was that it was also 12-18 months to recover from the actual procedure.  I would do it all over again in a heartbeat, but I must admit that I was quite naive as to the true extent of recovery one’s body must go through after chemotherapy and transplant.

As there are essentially two different recoveries happening in my body, I wanted to write a post that could cover each.  Let’s start with the chemo recovery and then get to the fun recovery, shall we?

Chemotherapy Recovery:

If you are drinking coffee or anything, take a swallow before you read this next sentence or else you are going to spray your screen.  All set?  I actually thought that hair loss would be the hardest part of post chemotherapy recovery.

When you are finished laughing, we can continue.

Seriously.  Now you are starting to border on mean.  Try to control yourself.  Ahem.

Hair loss has been the easiest and most tame part of post chemotherapy recovery for me.   I anticipated a certain degree of hormonal disturbance, but I was in no way prepared for the way my hormones went through a meat grinder, followed by a turn under a steamroller and then a toss in the fire.  While I have experienced some physical signs of hormonal upheaval (heavy and irregular cycle), it has been the extreme emotional toll which has taken me to the mat.

I feel completely tapped out of emotional energy.  I can easily handle the normal ups and downs that a regular day throws my way, but toss in one little kink and I go off the rails.  This has gotten smoother as the months have passed, but I still find myself a bit shaky if I am made to handle any emotion which goes beyond mildly irritated or mildly happy.  I experienced this with a slightly different flavor back when I had MS (I seriously can’t use that line enough, “back when I had MS”), but it was different because I still felt like I had my hands on the reins.

Sadly, because I was not well prepared for this side effect, neither were my close friends and family.  In the first six months after my return, I turned very introverted and had little to no desire to be around people and no words to describe why I felt the way I did.  I am now stalled out with 9 voicemails to listen to, 17 e-mails to respond to, and 4 relationships which need serious attention.  Slow and steady may be the pace, but I believe I will see the other side.  Patience was never my best quality.

Aside from my hormones getting back to their regular levels, my WBC is now completely in the normal range and I am in pretty good shape.

Let’s get to the fun recovery update, m’kay?

Fun Recovery Update:

Summer is now upon Texas at full blast and I have been really enjoying my body’s response to the heat.  I sit through my son’s entire baseball games and even get up to pace back and forth behind the bleachers when things get hairy on the field.  The difference between this season and last is beyond remarkable.  Before HSCT, I know I said that if heat intolerance was the only thing HSCT fixed, I would do it.  Well, I got that and a whole lot more.

My balance is incredible.  There is no way I could pass a field sobriety test before HSCT, because I could not walk a straight line unaided – let alone put one foot directly in front of the other in the heel-toe manner I always see on “COPS”.  I have no desire to test my abilities in an official capacity, but I am certain now that I could pass with no problem.  I walk smoothly – no cane, no furniture walking, and no stooping over.  My PT said I had a little too much sway in my hips, but I told her that was because I’m Southern and has nothing to do with MS.

My left arm and hand continue to be weak and a bit numb, but I believe the strength is improved on what it was last year.  I trust my left arm to hold a baby this year and did not last year.  I still do not trust my left hand to find my keys in my purse or to even hold that purse using only my fingers, but I hope this improves with strength training.

I have not noticed any improvement in my vision, HOWEVER, I have noticed that I rarely see the flashing lights I used to always see when I closed my eyes.  Any MS patient who has had optic involvement will likely know the lights I am talking about and understand the all caps on “however”.

Cognitive thinking has also improved and continues to improve.  I am not able to read as much as I did in Moscow, but then I have far more on my plate here than I did there.  When I do get a chance to sit and read, I am able to do so with very little to no difficulties.  In addition, I am now tackling my “white whale’ of dramatic passage memorization and am finally getting to work on the book of “Esther”.  Performing “Esther” will be quite the feat, as it will essentially be a 35 minute monologue which will require every bit of MS shirking that I can muster.  I’m pretty excited about it and ever so thankful that God has granted me this opportunity.

The pain in my back and legs has not vanished completely, though it does not affect me anywhere near like it used to.  It nags more than tortures now and that is pretty substantial.

I am certain I could go on, but I have already far exceeded my personal 800 word limit (my gift to those with short attention spans) and will sign off for now.  Thank you for your continued prayers for me, my family, the people of Russia, and the auto-immune compromised patients who are finding their way to Russia and other HSCT facilities.  I love you all and I really and truly mean it.

 

 

 

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15 Responses to “…Being of Sound(ish) Mind…”

  1. Ginger June 3, 2013 at 11:16 am #

    As I read this post a few songs come to mind “I need thee every hour”, “I stand amazed”, “I stand in awe”, “Mighty to Save” and “10000 Reasons”. And as I type this comment, more and more songs come to mind. How incredible, honest, beautiful, stunning, fabulous…I can’t come up with the words to express my joy in all of this!

    • ericswife June 3, 2013 at 11:18 am #

      I love your playlist. Perfect. XOXOXO!

  2. Wendy Nash June 3, 2013 at 11:26 am #

    so so happy for you on most all of this information! I’m happy to have had the transplant too and am now fighting bronchitis AGAIN!! My WBC is wonderful and has been since month 3+ but apparently my little immune system is still battling uphill. Back to the doctor tomorrow and hope it’s going in the right direction. Wendy

    • ericswife June 3, 2013 at 6:57 pm #

      You have my prayers, Wendy! Maybe it is because I have been a hermit, but I have had zero immune system hiccups. I hope yours responds similarly soon!

  3. FergsMouseTrips June 3, 2013 at 12:08 pm #

    Can’t wait to go to that Esther performance! What a celebration that show will be (as if it wasn’t already a pretty miraculous story)!

    • Janelle June 3, 2013 at 4:24 pm #

      Well my dear you are just about the mostest bravest woman that I know …..God is on our side . …..and …..you had me when you showed your strengths AND vulnerabilities!!!!!! Why can’t more of us do this???? Amy you really could hook up with with a PR type person and share your story…. I think you are that kind of inspiration for everyone!!! Grace and Peace my friend. Janelle

      • ericswife June 3, 2013 at 6:55 pm #

        I love you, Janelle and you are too kind. I think you and I both know that my greatest “strength” is actually merely a pinch of a lack of shame. ;) I’ll have my PR person spin that for the press release. Where IS that PR person?

    • ericswife June 3, 2013 at 6:56 pm #

      Me too! I am trying to talk Eric into a few weeks at a spa so I can really get into character. I usually scoff rude at method actors, but I see some benefit here.

  4. Linda Luckstead Benskin June 3, 2013 at 7:37 pm #

    Of course, even if you had not had HSCT, hormonal swings would have eventually come your way – you are just getting menopause a bit earlier than some. ;-)

    • ericswife June 4, 2013 at 9:57 am #

      It looks like I have dodged the early menopause bullet, but Eric is now planning to buy a bunker for when I do get there. ;)

  5. royce June 4, 2013 at 7:48 am #

    LOve your honesty. Your determination and perseverance is truly remarkable. We continue to pray for your full recovery and fully expect that things will just keep getting better. (saw your mom and dad at Sutherlands in Fredericksburg last week and had a nice visit. They are really busy with their project here) Love you.
    royce

    • ericswife June 4, 2013 at 9:58 am #

      Your encouragement means more than I can say and more than you know, Royce. Much love to you and Barbara!

  6. TrenahofTexas June 4, 2013 at 10:10 am #

    comprende

    • ericswife June 4, 2013 at 10:25 am #

      I knew you’d comprende. Much love from the trenches.

  7. Aunt Lori June 5, 2013 at 11:15 am #

    I’m still here, reading, praying, and loving you. No attention needed here, just concentrate on you and your family. Love, love, love, Aunt Lori

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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