Tuesday, February 2, 2010

So we had a long clinic visit today and it is going to be a busy week. Today I received STA-9090 (the trial drug), platelets, red blood cells, and a dose of IV daptomycin (an antibiotic). They decided to start the daptomycin because the site where my hickman central line was is getting red. The hickman was taken out back in September but still hasn't healed. The "cuff" that held the line in place internally only partially came out when the hickman was pulled out so this is probably the reason for the slow healing. I am scheduled to have the rest of the cuff taken out on Friday. We will also have to go to clinic everyday to get the IV antibiotic because my student insurance does not cover home infusions. In addition to all of that I have a bone marrow biopsy on Thursday. So we have lots of medical stuff to do this week.

Today's treatment was the last treatment of the "first cycle" of the clinical trial, however the doctors have decided not to take a break between cycles since I've handled the drug very well with very few side effects. So "cycle two" will start next week. I'm glad there won't be any time in between. I want to keep beating the Leukemia down instead of giving it a break.

I also forgot to report that I had my first "hair cut" last week :). Mom just trimmed it in the back around my neck to keep it from becoming anything close to a mullet. My hair did not fall out with the round of chemo that I had in December so it has been growing steadily since about August. Mom says it looks like an actress from the old show Northern Exposure (I'm too young for that) or a news contributor on MSNBC (never watched that channel) - so I have no idea who to compare it to.

Much Thanks! Amy

P.S. - I finally figured out how to make it easier to comment on the blog, first go to the "comments" page then:

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  1. Amy,
    I am praying for God to carry you through this week! Congrats on the haircut!
    Hope Michael is enjoying his time overseas. I remember when I flew into Amsterdam and then went to the Van Gogh Museum. (Try looking at a Van Gogh painting while under the influence of jet lag -- a real "trip"!)

  2. Hey Pretty Lady,
    And it just keeps snowing. LOL It is absolutely beautiful! It sounds like you are going to be really busy this week. That will probably make those days without Michael go a little faster. I will pray that the biopsy goes quickly with little discomfort and GREAT results, and that Friday has NO complications as well. I'm hoping your Grandma gets to come even with this weather. I know how much it means to her as well as you and your mom.

    Sending all of you lots of HUGS and LOVE,

  3. Hey,

    Glad to hear things are staying positive. Hang in there and we'll keep praying for you! Oh, and just so you know, my parents think Northern Exposure is the funniest thing ever and I've never seen the humor in it. Don't let your Mom talk you into watching that one ;)

  4. You indeed have a busy week. You and Mom will be eligible for a medical degree soon with all the terms and procedures you've come to know so well. You sure are able to explain it to us in layman terms, and that helps. While I really do like snow, I've had enough for this winter. Just hope the weather doesn't keep your visitors from travelling to see you. As always you remain in our thoughts and prayers. We love ya!

  5. Wow!! What a busy day and week you have. Like Sherrie said, it'll make the time Michael is away go much faster. Sure hope things go well for you on Thurs. and Fri. It's good to hear they're going on with cycle two without taking a break. You did so well with cycle one and we are praying you'll do as well with that one also.
    I'm glad your grandma is down there to help while Michael is gone. She may even have to extend her stay. I don't think she would really mind that. I understand they had more snow in her area and they're calling for even more this weekend. We're getting more now also. It's pretty but, I've had my fill of it now.
    You take care and give your mom and grandma our love.
    We love you,
    Patty and Tommy

  6. Awwwww....LOVED Northern Exposure...Josh must just be too young to appreciate the finer things of life! LOL...sorry, Josh....With your hair growing out, it must be such a great experience this time instead of the usual dreaded period that we've all experienced when we have it "growing out" and trying to figure out how to make it look like a styled "do". This sorta puts it all in better perspective, huh?.....Puppy robbing us of much needed sleep so I write this a bit bleary eyed....Love to you all...Disregard this post if it makes no sense!

  7. Hi,
    Hope you, mom, and aunt Mary Beth are having a good visit this evening. It was so good to be with you this week, and glad I left today before any falling white stuff starts. What a winter! Hang tough getting the "cuff" out tomorrow, then you will have a three day break...well deserved.
    Have a great weekend, Michael will soon be home, what a great experience this week was for him. Can't wait to hear about his trip. God bless, I love you. Grandma

  8. dear durham gang,

    sooooooooooo great to hear good news coming out of your neck of the woods!!! wait a minute...
    whose naked in the woods?????? is that one of those yankee initiation rituals or something when yous guys move south or what?????? yall have given a whole new meaning to NORTHERN EXPOSURE....did nobody do a background check on these folks??????? makes me wonder what that whole "haircut" terminology really means????????
    just what we needed down here......first we get a governor that don't know the difference tween appalachian trail and argentinian tail and now this.....within two weeks, he's taking out one of our geese and she's exposing herself in the woods!!!!!! i forsee an oprah episode in the works....i sent yall some classic emails this morning and don't worry yourself over that national security investigation....technically; i was in international waters ......thats my story and i'm sticking to it.....have a great weekend....hugs and kisses

    col. ollie north

  9. Well, I always knew the word got around about you, but Ollie North???? Just wait until the "Planned One" reads that comment! Also, does he know that he will be billed the cost of each word printed? Whoever would get the money would need it, so that's o.k. It's fun to read all of your comments, including those of the SC planned one. Love you! Grandma

  10. Hi amy from the frozen north. i am always so proud of you when i hear your positive attitude coming thru in every way - and i see that sweet little smile in my mind that i always remembered . we were w/o power here til yesterday morning, so it was back to basics again - as in no water, etc. :(
    take care of yourself honey and know that we are all here - and everywhere it seems - praying hard for you. it works. love you.

  11. Good morning, sweet Amy,

    It is snowing out my window again. I feel like I don't have a job anymore! Andrew is across the street playing with his friend "big" Andrew, who is about 10 months older. He is glad we're home so he can play with his buddy. We are praying for you, as are so many people. Keep fighting!