Day 26: Where Do We Go From Here?

27 Oct

Now that I am feeling somewhat recovered from the effects of chemo, and am getting some energy from the gaining back of my stem cells, I thought it important to talk about what the long  term implications are of this treatment I have received.

When I leave Russia, my health will likely not appear much differently than it did when I left.  Do not anticipate me racing off the airplane with a whole new zest and energy just yet.  I have lesions, which have been significantly calmed since I have been here and I know that that process will continue for up to 18 months.  Further, I have a certain degree of scarring, and I am hopeful that those will, at the least, be mended to some degree.

The degree to which this treatment heals me is in the hands of God at this point.  I am prepared for complete healing, and prepared to be content with just feeling better than ever.  Both are now possible and that gives me great peace.

I will be closely monitored by a local hematologist upon  my return and this will be a key part of how far I push myself for physical recovery, as I do not want to cause my immune system any undue stress.

As I have been monitoring my body for twinges and signs of healing, I have noticed muscles, which were once wrenched with spasms suddenly relax and now kind of jiggle with lack of use.  I intend to rest for a bit when I return, but will be beginning physical therapy as quickly as possible to retrain my body how to stand, walk, sit, climb stairs, and even stand at a counter without always having to compensate for MS and the ways it contorted me.  This will be a lot of work, but I am excited that I get to do it.

Fatigue was among my greatest disabilities with MS and it will take time before I can sort out recovery from chemo fatigue from recovery from MS fatigue.  This too, is an exciting prospect.  What new things will I have the energy for?  What new challenges will I get to take on?  After years of wondering what was going to be next to go, it is a thrill to wonder what will be next to come.

One symptom that hampered me from day one of diagnosis was that heat became intolerable to me.   In my youth, I would spend hours in a hot bath, refilling it over and over and enjoying a good book.  I now know that I can enjoy a good book once more, and I suspect that a nice hot bath may not be far behind.  I still have a hickman line attached to my chest, so my showers must be brief and careful, but the heat is a pure pleasure and I leave the shower feeling none of the effects, which would have once forced me to have an immediate sit down.

I look forward now to camping trips with my children which are not so carefully planned around the Texas heat, and days sitting on the back porch with an iced tea and no constant monitoring of my heat exhaustion. These are real treats to me and I can hardly write about it without tears.

I may not run a marathon, or maybe I will, but what I do know is that I will get better than I have ever been and that is a priceless gift.  Thank you all for everything you have done to make this possible for me and my family.  I love you all.  Mean it.

Please continue to pray for the brethren in Russia.

8 Responses to “Day 26: Where Do We Go From Here?”

  1. Brooke Slick October 27, 2012 at 6:28 am #

    Ok, Ninja Amy, you can stop reading my mind any time, now. I was wondering all of these things about you yestererday…seriously. Wondering what kind of symptoms you had before, and what you expected/hoped you would see dissipate, and in what length of time. Essentially, you’ve answered all of those questions in this post, and I thank you, once again for all of your soul-bearing information. At one point, you had mentioned, that to be considered for HSCT, that you must be off of Tysabri (which I’m currently on) for at least 6 months. My next thought was whether or not their is an age limit or disability scale range that you must be in to be accepted. I am a very healthy 48-year old women (except for you know what [MS]). I fall within the 5-6 range of disability and am still walking. I use a trekking pole when I’m walking in public and I wear a brace on my right foot to keep my right foot from dragging due to foot drop. Imbalance and foot drop are my two most daunting detriments to living as productively as possible with MS. Any light you could shed on the hoops that one of us potential HSCTrs may have to jump through (figuratively, of course) would be greatly appreciated. Your strength inspires me every day and is an invaluable source of hope.

    • ericswife October 27, 2012 at 6:52 am #

      I know that at the CTCI clinic in Tel Aviv (in my links) they are very lenient with whom they will accept into their protocol, regardless of age, EDSS, or certain health issues. Pirogov is also quite lenient, though they want you to be in excellent health (naturally, aside from MS) in order to tolerate the chemo. As far as Tysabri goes, my understanding is that it complicates your body’s recovery from the chemo and some doctors are concerned about starting a regimen of chemo so close to a regimen of Tysabri. I never was on it, so this was never a concern I had to question a doctor about, it is just something I have heard tossed around in comment threads. Dr. Fedorenko will take patients your age and health status, I do know that. Perhaps you should write to him and ask further regarding your medication status. I do know that making such a choice could be a bit hairy because it would mean leaving one “known” for another “known” with a big dark “unknown” in the middle.
      Happy to answer any questions I am able!

  2. Linda Luckstead Benskin October 27, 2012 at 7:35 am #

    Looking forward to those muscles being strengthened through PT so that you can return to the trials of ordinary life most moms dread. Love you. Mean it!

    • ericswife October 27, 2012 at 8:06 am #

      It’s funny, but I am really getting excited about hand mixing bread and folding towels and all the fun stuff of homemaking again. That is where I am most content.

  3. Janette Scarborough October 27, 2012 at 8:25 am #

    There is much wisdom in your approach. Keep thinking this way. I am reminded of a conversation that I had with a doctor once; he said the well over 80% of the patients he saw every day had problems that resulted totally from stress…back problems…migraines…allergies…ulcers, and the list went on. So please stay away from anything that in any way is stressful and keep your wonderful attitude. This is all the advice Dr. Scarborough has for today. Take care sweetie.

  4. Jean October 27, 2012 at 8:49 am #

    Praying for all your desires to be accomplished in time. Praying for God to run before you and bless you every step of the way. Acknowledging God will give to you His Best, and that may be a surprise to you, but what form it takes He will be there to hold you hand and guide you through it. May He continue to give you His Peace…. Realize there are no wasted experiences, all can be used to glorify Him…”If we suffer with Him, we will also be glorified with Him….”

  5. arisilvasti October 27, 2012 at 12:50 pm #

    how does one start a charity to contribute to having this done?

    • ericswife October 27, 2012 at 6:42 pm #

      I was blessed with a large community of people who pitched in in ways that I cannot begin to count. I know other people who have taken out medical loans, gone to sites like and told their story. Really, I think it is just about getting your story out there to everybody you know until you find the right people who can partner with you to make it happen. I believe with every fiber of my marrow that God made this happen for me, so I suggest you start with prayer. Best wishes!

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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