Friday, May 7, 2010

So I haven't updated in while because things have been changing kind of rapidly and not so much for the good. WARNING: This post was hard to type and may be hard to read. First, let me say that we have run out of "curing" type options. The treatments I am receiving now are simply to try to control my Leukemia as much as possible and give me more time while also weighing quality of life vs. quantity of life. Michael and I have truly found peace with this and are actually handling it very well. We've kind of been eased into this. We knew it was a big possibility when my Leukemia came back in November and especially when the chemotherapy I received in December did not work.

We found out that I am not eligible for the clinical trial that is starting in May so that was our first change in plans. I started taking Hydrea on Tuesday but unfortunately my white count still took a fairly big jump. We were hoping that the Hydrea would at least work for a couple of weeks but it doesn't look like it is controlling my leukemia well enough. So, we go to the next plan. Today I am starting a round of mild chemotherapy (Mylotarg and Vidaza). They really think I will not have many side effects from this and will tolerate it well. These drugs will be given to me outpatient but this means I have to come to clinic everyday. In addition to this chemo they are tripling my dose of Hydrea hoping that it will at least help a little.

I also had a low grade fever last night and this morning so they put me on IV antibiotics. One positive thing is that I don't have to deal with the side effects of oral antibiotics. This seems so little but let's focus on the positive! Again, another positive is that this is outpatient treatment so I get to sleep in my own bed! My back has also been hurting which they say is probably an effect of the high white count so I really appreciate pain medications right now!

Hope all of this makes sense, it's a lot to take in. In spite of the fact that my Leukemia is being stubborn and hard to control, I actually feel good which I am so thankful for.

Hope the weekend treats you well, and Happy Mother's Day to all the moms out there,
Amy

13 comments:

  1. Yes, my dear, this post was hard to read and this comment is hard to write, but your phone call to me made it a little easier. I am thankful you are feeling pretty good, you sound good. You are amazing! Michael is amazing, too. He has been a rock through this ordeal, and I can't say enough for your mom and dad. Life throws us some curves sometimes, and they are not easy to deal with. I am just thankful we know The One who holds "tomorrow". Our future is secure. I love you loads, Grandma

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  2. I'll try this again, lost it!
    You are right, my dear, your update was hard to read, and this comment is also hard to write. It was made a little easier with your call to me and just hearing your voice and how cheerful you are. You are so amazing. Michael is amazing! He has been a rock through this entire ordeal, and I can't say enough about him, or your mom and dad. Life throws us some curves sometimes and they are not easy to take, but I am so thankful we know that our future is secure. God has a plan, one that I don't understand, but he has all the answers. Someday we'll all see it together.
    I love you bunches, Grandma

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  3. Amy, I know that we have been praying for things to be going different for you and now we see that it is not going "our way" but what we do know is that it is going the "lords way" and he is the Great Physition and he holds tommorrow for all of us. I'm glad that you and Michael are somewhat at peace with all of this, but it hasn't sunk in with the rest of us as of yet. It does make it easier for us knowing that you have peace with the decisions that have been made. We love you so much and you have been a inspiration to so many people, keep smiling cause thats what we do when we think of you. Please know that you are very loved by so many people, lots of love to you, Karen, Tim & Hollee

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  4. I'm sorry, Amy....You've been giving it your best shot always despite the pain, the inconvenience, the disappointments....I wish you'd consider publishing your blog..as an amazing legacy of your strength, your love of Michael, family, and friends....and to help others realize that it's not over 'til it's over.....and what comes next is not to be feared....only anticipated and planned for....I wish for you continued quality of life but with the shred of hope that days and weeks still lie ahead for you. I love you and your family....always....

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  5. Amy,

    We believe in miracles because we have seen so many of them and know there is nothing the Lord cannot do. He has a plan for your life and will provide everything needed to see that it happens. Our prayer for you is that you improve every day until the Lord completely heals you in His time.

    Our prayers are with you daily.

    Trusting Jesus always,

    David & Candy

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  6. Dear Amy, you're right, this was very hard to read, but I admire your honesty, determination and faith. You truly are an inspiration, and a blessing. You, and Michael, and Mom and Dad are constantly in my thoughts, and especially my prayers. My favorite verse brings me comfort tonight: "Trust in the Lord with all your heart, and don't lean on your own understanding."
    God, I don't understand, but I trust you.
    I love you!

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  7. Dear Amy, Our plan and our wishes may not be God's plan for us. As you know, when I lost my Roy, we had run out of options also. He, too, was at peace because of his deep faith in God and knowing that he would be in Heaven, playing golf and softball. I know that he is in Heaven. I also lost my college roommate in March. She had battled breast cancer for 25 years, all of her married life. She made the decision last fall to enjoy what remaining time she had left with joy and to surround herself with those who meant the most to her. She, too, knew God's heart and He knew hers. Without a doubt, she is in heaven, chatting away.

    I know the next days and months will be difficult, especially for Michael, your family, and all those who have come to admire and love you for your courage, spirit, and fight.

    Be at peace, Amy.
    I will keep you in my prayers.

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  8. Hello Amy. I know you don't know me but I am a friend of your mother and father-in-law. I've been trying to keep up with your progress through them. Stay strong. God has a purpose in all things he does, believe and rest in Him. I'll be praying for you and your family. It is so amazing how one life can touch so many. You don't even know me but I am very touched by your courage and faith. God bless you. Tina

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  9. Saturday, May 8, 2010
    Hi Amy,
    You remain inspirational! What many challenges you face, and with such clarity and grace. We will be thinking of you even more tomorrow as we celebrate mothers and women in general. Much love, Chris and Suzanne

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  10. Hi Amy,
    You are truely an inspiration. The grace in which you handle everything is amazing. You last post was very hard to read. You and Michael are so brave and I admire both of you. I continue to pray for your miracle for you and your family.

    Love,
    Debbie

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  11. Love ya'll and continue to keep you in our personal prayers and on prayer lists. Know Mother's Day will be very special.

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  12. Amy, You are an amazing person and we continue to keep you in our prayers! We love you and Michael.


    Josh, Krista & Calvin

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  13. Donna Simpson NicelyMay 8, 2010 at 10:23 PM

    Amy, God is using you in your weakest hour to touch others with your strength....which, as I write this, sounds confusing. But, none the less, it is true....You have touched my heart deeply and I cannot hold back the tears.......Blessings to you and Michael....May the Peace that passes all understanding be yours....

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