One Year Later

1 Oct

It is now one year since I arrived in Moscow and in two weeks it will be one year since my transplant.  I continue to heal and I thought it would be appropriate to make an update about how I am doing so far.

I think that, if HSCT was an advertised product, I would be the much lauded poster child.  My results have been phenomenal.  However, even as I celebrate my body’s incredible response, I know that others have not recovered as well as I have.  All patients who have gone after me have seen the ongoing progression of disease halt, though not all have seen a reversal of symptoms as significant as I have.  That’s the thing about poster kids – they have tiny print under their image that says, “Individual results may vary.”

If I compare myself to how I was doing this time last year, I could easily say that I am completely symptom free.  Though, if I compared myself to a body that had never experienced MS, I would notice a handful of symptoms.  This does not disappoint me in the least, but I want to post about these lingering symptoms to keep future patients aware of what they might expect.

  • I still experience weakness in my legs, the left leg in particular.  I can easily jog up and down stairs most days, but there are still days when I find that I must grip the rail and take it easy.  A recent cold made this symptom more pronounced.
  • I no longer have painful tics in my face.  I experience occasional twinges that feel like a tic is threatening, but they are short lived and never reach the level they once did.  I am able to continue talking, eating, or whatever without fear that they will escalate.  I am hopeful that the twinges diminish with time.
  • The tight band of the MS hug is gone completely, but I do still have days when the pain of the spasms is on the same level as it was pre-transplant.  I am able to work through it and it is not as uncomfortable without the added stress of the hug sensation.
  • My cognitive thinking is completely healed.  I no longer have a confusing fog that over whelms me.  I know this post was supposed to be about symptoms I still have, but I had to sneak in a symptom I DON’T have.
  • My left arm is still weaker than my right arm.  It is significantly stronger than before, though it does still fail me from time to time, some days more than others.
  • I do still experience a certain amount of bladder issues.  These are not as significant as before, though it still continues and I had to report

There.  That’s all the lingering MS I can think to tell you about.  While some days are more “MS-y” than others, I am still far better than I was last year and cannot complain about my results.

I continue to thank God for all of you, for this opportunity, for the good people of Russia, and for the work before us all.  Thank you for being such a big part of my healing – for your financial support, your prayers, your check ins, your patience with me as I heal, and for your love.  I am honored to be a vessel of so much glory.  My cup overflows.  I love you all.  Mean it.

Ruth – Before HSCT

4 Sep

For comparison, I thought I would post this video of me presenting the Old Testament book of Ruth on Mother’s Day, five months before transplant.  Even during that time, I often heard people say, “You look great!”  While I appreciated the sentiment, I knew that I looked nothing like I felt.  Aside from the fact that they are two different books, I want to make a brief list of the differences between these two presentations.

  • I used a cane.  Though my balance was pretty good, I needed the cane to lean on as my legs (left leg, in particular) would become heavy and hard to drag around.
  • Because of the extreme discomfort and pain brought on by the rib crushing sensation of the MS hug, I took any opportunity I could to hunch over.  This sensation also made breathing difficult and I paused often to take in quick, shallow breaths.
  • Though it is invisible to the eye, my face and throat shocked me every minute or so with painful spasms.  These happened when I stretched my face too much or spoke too quickly.  I no longer have these spasms and presenting Esther felt like I was unbound and set loose.
  • In order to be able to do this presentation, I had to drink 3 cups of coffee, 20 mgs. of doctor prescribed amphetamines, and sequester myself from any and all  conversations for a full 24 hours before, during, and after.  I went home that day and was useless for three.  In contrast, I presented Esther three times with only half a cup of coffee and went home and did two loads of laundry and made dinner that evening.

I believe The Word is still clearly shown in this video of Ruth, though I think it also helps show me just how drastically I have been repaired.  I look forward to what further healing brings.

Esther 1-8

2 Sep

I did it!  Three times in one morning I was able to stand and present 8 chapters of the Old Testament book of Esther.  The ability to do this in this manner is a gift from God and my face still hurts from smiling about it.  Thank you to everyone who prayed for my healing in this area.  I love you all.  Mean it!

Reposted From Facebook

7 Jun

I know that n0t all of my readers here follow me on Facebook, so I wanted to copy this exchange for everyone to see.  The first part was written by my dear friend Carolyn and the second part is my response.  It’s okay if you get a little goosebumpy.  I did too.

Carolyn wrote:

For any of you who know (or know of) how debilitated Amy Peterson had become because of her MS, I want you to know what the stem cell transplant did for her. She left the US needing a cane and/or a wheelchair. She had no energy. Her body would not do what she wanted it to do. She went for treatment hoping, but not knowing what the results might be. But the results were a miracle! Tonight I saw Amy RUN IN A STRAIGHT LINE WITHOUT WOBBLING AND WITHOUT LOSING HER BREATH. She just flat out broke into a run. I nearly fell down in awe of the sight of it. She runs. She laughs. She gets down on her hands and knees to clean things and then GETS BACK UP!!! God is so gracious. So gracious. For all of you who donated money for Amy to go get the treatment in Russia, your investment is returning 100 fold. You gave this amazing woman the chance to participate vigorously in her own life!!! SHE CAN RUN!!!

I responded:

Here’s my crazy, weird running story (get you a coffee – I’m feeling wordy) : When I was a kid, and up until I was about 14, I really enjoyed running. Not athletically, I just enjoyed getting places quickly and I liked everything I felt in my body when I ran. This stopped and I just assumed it was because I was turning into a mature young lady. Ha. When I was 17 and a quadriplegic, I remembered the feeling of running and promised myself that I would do that again some day. I never really did, though I did learn to walk again and that felt almost as good as running.
Fast forward to two months ago. I was at Ian’s baseball game and at the concession stand to get water for Ian when I heard some pretty excited cheering coming from our field. Not wanting to miss anything, I started to walk quickly back. Without being fully aware of what I was doing, I started to run. As I ran, it occurred to me that I was running (say it like “Forrest Gump” in your head. I did.) It was about a twenty second spurt of running, but it was exhilarating. I chalked it up to odd fluke born of a mother’s love and desire to not miss the game. A week or so later, Eric and I were in the car in the driveway when I realized I had left my phone in the house. Not wanting to irk the husband, I ran back inside to get it. Again, my head was a whir of thoughts. I was running! 
Last night, Carolyn Evaine Counterman came by and I invited her to come across the street with me to tend to my latest gardening project. As we cleared the gate, I realized that I had left the water on longer than I thought and I broke into a sprint to shut it off. Carolyn went wild at the sight. It was the first time I had done such a thing with a captive audience. 
I am writing all of this out because reading this post by Carolyn was the first time in 8 months that I have cried with the realization that THIS. IS. HAPPENING. I am getting better. Better than I dared to say I had hoped for. I have been overwhelmed with process of getting over the chemo and getting back into the swing of the day to day – so overwhelmed that I sometimes forget that I ever really believed HSCT would work. Carolyn’s testimony here reminded me fully. It worked and it is continuing to work. Not sure how much running I have in me, but I know that I can book it if I have to and that is a pretty exciting place to be.

…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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