Day 16: Chemo Nap, Lunch, Chemo Nap, Repeat

18 Oct

I was waiting to post today because I was hoping to have some numbers to report from my mornings lab work, but it is possible that the good doctor popped in during one of my naps and let it go.

While I do not know the exact numbers, I do know that my darling Eric had coffee with Dr.Fedorenko this morning and it was determined that I will remain in isolation for 7-10 more days.  As much as I had hoped and planned against this, I am really fine with it.

The tiredness of the chemo has hit me pretty hard.  After 18 years of MS, I have gotten pretty good at knowing my different types of tired: little bit of a cold tired, MS tired, not enough sleep tired, PMS tired, too much activity tired, etc.  This chemo tired is a whole new level for me.  I’ve only had the flu once and it was a cakewalk compared to this fatigue.

Fatigue aside, I have some news to report which has me pretty jazzed and it should you too: I am starting to notice the tiny buds of recovery from MS.  Transcribing all my memorized Scripture into my little journal has been a two year long chore for me.  I can write legibly for maybe ten minutes before my hand seizes up and I must stop, sometimes for a whole day, before I can get back to it.  My time in isolation has seen me write full chapters with no seizing, except for the chemo fatigue.  This, friends, is a beautiful progress.

While my hands have always appeared relatively healthy to those who didn’t know differently, in truth, they felt as though I was always trying to work while wearing thick leather electrician’s gloves.  This has not remedied completely, but it is moving in a good direction and this gives me much reason to celebrate.   Two months ago, I was washing my poor daughter’s hair and she asked me, “Mom? Can you maybe be just a little more gentle?”  Without showing her my tears, I said, “No.  I am very sorry, but this is all I’ve got.”  I am happy for her precious head to know that I am getting better.

I am excited to see what comes back.  Not just because I want to feel better, but because I want to be a better Mom and a better Wife and a better Daughter and a better Friend and a better Servant to the Creator of it all.  This is a mind blowing time.  Thank you all for your prayers, your financial support, and your honest belief that this would work.  I stand amazed.

Love you all.  Mean it.


Edited to add:  Dr. Fedorenko just popped in to let me know that my leukocyte numbers are dropping appropriately.  They must drop to zero before they go up.  I’ll be popping over to Dr.Google after I post this to see what that means.


13 Responses to “Day 16: Chemo Nap, Lunch, Chemo Nap, Repeat”

  1. Wendy Nash October 18, 2012 at 8:51 am #

    It means you gotta get worse (in numbers) before you get better! Gotta kill all the bad guys for the good guys to take over! Are you getting the shots to increase bone marrow growth yet?

    • ericswife October 18, 2012 at 8:54 am #

      I have to take so much on faith here, as many needles come at me with Russian writing and handled by folks who speak no English. I have been getting morning injections into my hickman line now, that I wasn’t getting before, perhaps that’s it?

      • Wendy Nash October 18, 2012 at 9:06 am #

        Not sure how they do it there, of course, but here they were given directly into the belly even though I still had the PICC line. The same shots that were given a week before the harvest to grow them then too. This made for bone pain, does that describe it enough to know?

    • ericswife October 18, 2012 at 9:27 am #

      I thought as much. No shots like that yet. Maybe after my leukocytes hit the big ZERO.

  2. Linda Luckstead Benskin October 18, 2012 at 8:53 am #

    I am SO happy to hear that the Leukocyte numbers are as they should be, and even happier to know that some of your MS symptoms are reduced. You may have some permanent damage, but already we know that this treatment will result in less disability. Hurrah! I remain confident that the fatigue just means your body is very, very focused on growing a new immune system. Babies who are growing quickly sleep a lot too. Sleep, dear, sleep!

  3. Mike Glenn October 18, 2012 at 10:46 am #

    Amy, I am encouraged b/c you are so encouraged….So wonderful to read that you see some improvement….more than you have seen in years. The healing process is a slow one but when you see improvement the hope remains high…You have embarked on a new level of “tiredness” through these treatments…May God’s strength be yours daily. God’s Word is a source of that strength….Your faithfullness to Scripture (reading and writing it) gives a divine source of energy that enables you to carry on…

    • ericswife October 18, 2012 at 11:32 am #

      Joan and Andy’s tireless love of God’s Word and its healing power is what makes me love Premier so dearly. Other than my wedding rings, my Premier watch is here in isolation with me, keeping time and reminding me that God’s Word is POWERFUL. It’s a snazzy and powerful looking watch, so the image fits well. 🙂 Please send my love to dear Andy.

  4. Aunt Lori October 18, 2012 at 12:47 pm #

    Still here following you. Still amazing me. Still here praying. Still sending my love. And still wondering if your gas has abated. Love, love, love you

    • ericswife October 18, 2012 at 6:31 pm #

      gassy as ever. almost starting to offend myself. 😉 xoxoxox

  5. Linda Luckstead Benskin October 18, 2012 at 12:55 pm #

    Yep, praying for your tummy to get sorted out (mine did).

  6. Pat Walt October 18, 2012 at 2:04 pm #

    Amy, you absolutely amaze me! You truly are a “ninja” and I want to be just like you in my fight with breast cancer. What I see in you is how powerfully God is working in you and through you. I’m praying these next 7-10 days in isolation will go by quickly. I am praying for that “zero” you are needing in your body. I am praising our Lord for you! God Bless!

  7. fromcheaptherapy October 18, 2012 at 6:50 pm #

    as someone who’s just a few months away from my 22nd anniversary with MS in my body, i SO celebrate your “beautiful progress”, spirit, faith, waiting, focus, hope and continued BREATHING. Amy, i stand (although sometimes metaphorically) with you in powerFULL Ninja Style.

  8. Jana Clark October 18, 2012 at 11:52 pm #

    Amy, I wanted to let you know that as I read this I was moved with such compassion that I broke into tears, fell to my knees, and talked real intimately with Our Daddy(on His lap) about your healing. I have had this happen during one other time of healing)!
    The description of your hands and your experience with your daughter reminded me so much of many of my feelings/experiences before I was healed(after 16 years of praying and waiting!). I am so excited for you! Stay Strong! You are SO loved by Him and so many! You are also such an inspiration and blessing to all! PraIse the Lord!!! God is GOOD!

    Psalm 145
    1 I will exalt you, my God the King;
    I will praise your name for ever and ever.
    2 Every day I will praise you
    and extol your name for ever and ever.
    3 Great is the Lord and most worthy of praise;
    his greatness no one can fathom.
    4 One generation commends your works to another;
    they tell of your mighty acts.
    5 They speak of the glorious splendor of your majesty—
    and I will meditate on your wonderful works.[b]
    6 They tell of the power of your awesome works—
    and I will proclaim your great deeds.
    7 They celebrate your abundant goodness
    and joyfully sing of your righteousness.
    8 The Lord is gracious and compassionate,
    slow to anger and rich in love.
    9 The Lord is good to all;
    he has compassion on all he has made.
    10 All your works praise you, Lord;
    your faithful people extol you.
    11 They tell of the glory of your kingdom
    and speak of your might,
    12 so that all people may know of your mighty acts
    and the glorious splendor of your kingdom.
    13 Your kingdom is an everlasting kingdom,
    and your dominion endures through all generations.
    The Lord is trustworthy in all he promises
    and faithful in all he does.[c]
    14 The Lord upholds all who fall
    and lifts up all who are bowed down.
    15 The eyes of all look to you,
    and you give them their food at the proper time.
    16 You open your hand
    and satisfy the desires of every living thing.
    17 The Lord is righteous in all his ways
    and faithful in all he does.
    18 The Lord is near to all who call on him,
    to all who call on him in truth.
    19 He fulfills the desires of those who fear him;
    he hears their cry and saves them.
    20 The Lord watches over all who love him,
    but all the wicked he will destroy.
    21 My mouth will speak in praise of the Lord.
    Let every creature praise his holy name
    for ever and ever.

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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