Monday, October 4, 2010

Hi everyone! I'm happy to report that things are getting a lot better as far as my mouth sores/throat. I'm able to eat a lot more food but things still don't taste like they should (but as long as I can eat different things I'm not going to complain).

On the other hand the Revlimid did not work in lowering my white count. In fact, it shot up to 30! (normal is 3.2 - 9.8). So this must not be the drug for me. Dr. Rizzieri put me back on Hydrea hoping to get this count down again. Like I said in my last post there is a drug he wants to put me on which is similar to the STA-9090 (a protein inhibitor) that I was on at the beginning of this year. However, it will require a weeks stay in the hospital. This doesn't totally depress me because I know all the nurses and like the 9200 unit but a week away from my bed is not appealing. It also makes it harder on Michael and Mom when I'm in the hospital. (I'm a very spoiled in that I do not like hospital food and so mom or Michael bring me my meals plus I still don't like staying there by myself at night.)

My only other problem right now is just being incredibly weak. My legs have very little strength and I am having trouble with balance when I walk. Mom and Michael make me hold on to them whenever we walk anywhere.

Hope you all have a wonderful week,
Amy


9 comments:

  1. GOOD TO HEAR THAT THOSE MOUTH SORES ARE BETTER! GOOD LUCK WITH THE NEW DRUG, HOPE THEY CAN START SOON, BUT ENJOY THE BREAK. jUST HOLD
    ON TO MOM OR MICHAEL PLEASE, THEY DON'T MIND
    A BIT I AM SURE. HAVE A GOOD WEEK.
    LOVE YOU, GENIE AND EDDIE

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  2. I'm so glad to know you are eating more and the sore mouth and throat are better. Food will get better, just keep eating so your strength will come back. I know the hospital routine is boring, but you'll make the right decision. God loves you, and so do I.

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  3. Got to go on the kindergarten field trip to Ikenberry Orchards today. What fun!! Hope you are starting to see some fall colors there as well. Glad your mouth sores are better. We're already praying that the new drug will be very effective. Good to know it will only require a week in the hospital instead of a longer stay. While you're going places and holding onto Mom and Michael, give them a squeeze for me. I love you all and I pray for you ALL the time, every day.

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  4. I am so sorry that it has been so long since I have posted on your blog. I do read it often, but I am not sure if it is too late to post after several days has gone by. Things are busy here. We are planning a fundraiser for you on October 24th at the Senior Center in Sharon. Teagan continues to grow up way to fast. She now weighs almost 20 pounds and she is running around everywhere. She loves to brush her teeth and she copies things she sees. ;sljdkaj;sdfi;oja;skld;fjasdlkfj;lasdjfklas
    Teagan translation: Hey cousin Amy. I hope you are feeling better. I am running and climbing everywhere. My mom and dad put up this long net thing that blocks off the steps. Don't they realize that I need to climb and be FREE TO ROAM. They do take me to the park sometime and I love the slide. Hope you are getting ready for Halloween. I might be a chocolate chip cookie or a cupcake. I haven't decided yet. Well gotta go, cabinets to unpack, toys to thrown around, busy, busy girl. I love you, fish kiss your way (That's my new thing, drives the grownups wild) Teagan

    Well it looks like the computer was hijacked again. Well love to all in North Carolina. Take care and happy eating. Oh, by the way when I was at SAMs the other day, I noticed that they have the Cheesecake factory red velvet cheesecake in the freezer section. This could be very dangerous. Love Joleen

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  5. Hey Amy,
    I am so glad to hear that you can eat many more foods now. We are praying that new med. will be starting soon and that it does the trick :)

    Katie took Alli to the doctor for her 4 month check up this week. She weighs 16 lbs. and is 25 ins. long. That is almost 8 pounds and 6 inches gained. Problem is that the doctor told her she needed a bra :) Alli was just smiling, so Katie explained that that really wasn't a good thing for a 4 month old LOL
    Eat Hearty, Pretty Lady!
    We love you,
    Sherry

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  6. dear amy,

    we are soooooooooooo pleased to hear of your recent mouth and throat improvements.... you'll be back singing at carnegie hall in no time.... with a chimmichaungga in one hand and a supremmo mocha latte espresso thru the garden with extra cheeze in the other.......or perhaps a funnel cake with extra sugar chocolate and cinnnnamonmonmonmon!!!!!!!i apologize.... haven't been on your blog for a while....we've had a busy two weeks around our house.....donna spent almost a week in the hospital and justin got engaged and left for afghanistan via fort bliss texas..and i guess you have heard about.. about our ....our very own............
    USC GAMECOCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    sorry marybeth??????? yes.....the real usc just happened to dominate some team from ala...
    alaaa. ala--arkansas?????? no; i don't think thats right?????? ala--issianna state????? no....... that ain't it either.....you put it on toast....hummmmm ....not smuckers??? no...
    bama....yeah thats right.....ala--bama!!!!!!!!
    i won't bore yall with the details for marybeths sake but...blair told me *&)&%$@#! and then she said, "?*(^&$$%#@!$@#))"
    i promised not to ramble on soooooo i'll sign off now but continue your improvements and we hope to see yall real soon....maybe at the usc gamecock----boise state broncos national championship!!!!!!!!!love and kisses
    yoplriscaf

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  7. Amy,
    I am praying for God to strengthen your body and make that white blood count go down!!!
    Love to you and Michael and your mom!
    Lisa

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  8. hey sweet girl. i am glad those mouth sores are getting better and hopefully food will start tasting like food again. this has been a glorious october week and so hope you have been able to get out in it before you are 'captured' again for a week in the hospital. it will be a worthy capture to get back on the effective meds so will pray hard for a quick turnaround. david and i are at the beach - am puffing some salt air your way. just know i love you and pray for you every day. god bless. jane

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  9. Hi Amy,
    We, like Mary Beth and Mayfield, are thinking of you a LOT! you are an extraordinary young woman. Will hear more later from you.
    Much love,
    Suzanne and Chris

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