Saturday, March 10, 2007

A long day

Gee.  It is late Friday.  Really it's early Saturday morning.  I'm hungry but there's really nothing to eat in this house.  I didn't have time to go grocery shopping today.  That's because I went to the local hospital with John instead.

Just another little setback.  About three days ago John found this big lump in his arm.  It turned out to be an infection under the skin.  At any rate, it has been giving him a fever for a week or two.  We thought the fever was this cold or bronchitis he has been trying to kick.  But it turns out it is this infection he has on his arm, which is causing this giant lump on his arm. 

Well, after hearing about the lump from John's local oncologist on Wednesday, Dr. Claxton had his nurse call John today and tell him that he would need an IV antibiotic.  John was told he would get the Vancomycin (IV antibiotic) at our local hospital every other day (that's 7 doses) for the next 14 days.  All of this will take a big chunk of time out of our schedule, because it takes several hours a day for John to get the IV. 

The good thing about it though, is this time I won't have to be doing home IVs!  I have had to do those in the past.  But the insurance company wants the IVs done in the hospial.  So I am excited about that!  From now on they will either be done at the local hospital or the hospital in Hershey.

So John had a fever of 100 degrees today.  That's not that high, but when he gets a fever, it usually spikes quickly.  I have to watch him this weekend and make sure it doesn't go up too high, or we will have to take him to Hershey Medical Center.  I will have to clean the house this weekend, and pack in preparation of us going, just in case.  

I am kind of tired, but what are you going to do?  You do what you have to do.

By the way, the spleenectomy John was going to have has been cancelled.  Dr. Claxton didn't say exactly why he cancelled it the other day, but he did say it had something to do with John having the transplant instead.

The spleenectomy was to stop the Hemolytic Anemia.  Since it is not going to be resolved immediately, that will mean more frequent transfusions for John.  Also, as the MDS gets worse, there will also be more transfusions.  I am wondering how often John will have to be transfused.  

Okay, so that is the picture.  No, we are not negative.  I am just saying what is going on.

Oh, and Dr. Claxton wants to continue John's chemo.  I am not sure for how many more weeks.  He has already had it for 15 weeks in a row.  Well, there were some spacers in there.  The chemo should stave off the Hemolytic Anemia some and hold back on some of the transfusions.  Sometimes I worry about chemo brain.  Actually, all the time I worry about it.

Amidst all this we do go on and have a normal life.  We have fun together, talk, do chores, go to appointments, watch the news.  Today I went to the craft store and found a hobby.  I can't quite tell you all what it is yet, because I am going to make a couple of presents.  When I am done with them I will take photos of them, and post them after I give them as presents.

Okay, I have to go, You All.  Live big!  I am listening to "I Hope You Dance".  I hope you all dance!  

Love you, Krissy :)

32 comments:

  1. HI Krissy,

    Wow that is horrible news.... Just keep your head up and dont let get down you guys have faught this before as I have read in earlier entries... Hopefully you guys can fight agian and win again and go a couple more years cancer free.

    So wow your up this late at 1 39 am my time hehe I cant belive that I am up either lol.

    Please do keep us informed if yall have to go to the hosp or anything...... And if you need anything were just an email or blog comment away



    Christopher

    and on a happier note.. hehehehehe NO i dont dance lololol I look like a big tall stick dancing lolololol


    http://journals.aol.com/cmarlow330/ChristophersJournal/

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  2. Dear Krissy,
    I can't believe how much John (and you) are going through.  Enough already.  You two have been through the ringer and back.  I am so sorry.  I am continuing to lift both of you up in my prayers.

    Love, LuAnne

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  3. I am so sorry that the two of you are having to go through all of this.  I do hope that it gets a little better before it gets any worse.  I'll keep you in my thoughts.

    Greg

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  4. It's just one thing after another for the two of  you .  I know that must get to be heavy on your heart, but somehow you do what needs to be done.  Life for each one of us isn't always easy, but how we deal with the situation is what is important.  There is always hope and thankfully we have that.  God Bless you Both.  'On Ya' - ma

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  5. Good luck to John and yourself in this setback, but good for you to carry on with life outside MDS and AHA.

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  6. ((((((((((((((((((((((HUGSTOYOU)))))))))))))))))))))))You guys been through so much.I am sorry that John has a set back,but,youu 2 are very brave and keep going on.Your both always in my prayers.Hugs and love.

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  7. Well, I for one am GLAD that John's IV's will be done in the hospital.  I marvel at the two of you. Amidst all the setbacks you do live, and have good attitudes, probably better than the rest of us. Maybe you know how valuable being healthy is more than the rest of us.  It seems as if you have mastered the art of living for the day, making life as nomral as it can be.  I am anxious to find out what your new hobby is Krissy.  Keep me posted on everything.  Merry

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  8. I can't wait to see/hear about your new hobby... I hope it is something you can take with you to the hospital, it will make some of that time while John is getting a transfusion go quicker.
    http://journals.aol.com/astaryth/AdventuresofanEclecticMind/
    http://adventuresofaneclecticmind.blogspot.com/

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  9. You have sucha  great attitude.  Your new hobby has me curious.  :)
    http://journals.aol.com/mrsm711/LatteDah/     Tracy

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  10. I heard that song coming home yesterday. It has a whole new meaning for me now. Tammy

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  11. I love that song.  You've really got a lot going with John. Will keep you in my thoughts and prayers.
    Pam

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  12. ((((((((((Krissy & John))))))))))) you are both such wonderful people. I am keeping you both in my thoughts and my prayers.
    Cindy

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  13. Glad to hear you are having life as usual, Krissy =)... That is important.  I'm glad  you don't have to administer the IV's, too.  That is a nice little gift.  I can't wait to see your craftwork =)!  So, I thought they weren't going to give John more chemo right now, but the blessing will be that he will need less blood.  Take care and I love you guys!  If I can do anything, call!  Love, me xox
    http://journals.aol.com/valphish/ThereisaSeason

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  14. Love the song, I do hope all goes well....
    Michele
    http://journals.aol.com/glensfork4/these-are-my-thoughts/

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  15. Don't worry about chemo brain.  Just another excuse for CRS.  It is no worse then Fibro fog.  See now I have two excuses.  I am glad in a way you don't have to worry about the IVs and that it will be done in the hospital.  In one way it is good, in another way it takes you away from your home.  (((Krissy and John)))

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  16. hugs and prayers!!!
    Becky

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  17. keeping you both in prayer
    i'm glad you wont have to mess with home ivs i wouldnt be able to do that...i know i would if i had to but i'm awful with needles.
    just turn my head and dont look if i need it.
    take care
    emily

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  18. (((((((Krissy and John))))))))) I am glad you found a hobby of something you can enjoy and glad life is not all caretaking.  My heart is praying for both of you.
    loving you
    karyl

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  19. Krissy, I hope you dance to.  I love that song.  When a crisis comes, we shall find that our own nature as well as the grace of God will stand by us. My prayers are with your both always.                       Love  Myke

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  20. You both keep hanging in there and keeping that positive attitude, amazing how that can get you through anything.  You folks are in my thoughts and prayers always....Arlene (AJ)

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  21. I really agree with that song " live like your dying" thats my new goal in life...lol
    Having a normal life is so important no matter what our challenges are.
    I am sooo curious about your new hobby too.

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  22. aw Krissy I think about you all the time. You & John are so strong & brave. I hope things start to improve. My aunt has been suffering from colon cancer and this week she had a major surgery to remove her colon, much of her intestines and a bunch of other stuff. She will have to use a colostomy bag now but she has the greatest attitude. anyway you & John have great attitudes too & great faith so I am sure you will be fine with the Lord at your side.
    hugs & prayers
    Melissa  

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  23. I love I Hope You'll Dance too Krissy! Sorry John has to go back to get the IV antibiotic but it's better than having to do it at home. I hope you have a lovely weekend and enjoy your new hobby! Jeannette xx  http://journals.aol.co.uk/jlocorriere05/Welcometomytravels/  

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  24. God bless both You and John, such troupers you are.   It's good to hear that despite all the setbacks, you still have the will and the courage to smile.  I'm keeping you both in my thoughts and prayers...!!!

    Lippy..:)
    http://journals.aol.com/herlippy1/TheSpineLineToo
    http://journals.aol.com/herlippy1/ChronicTonicawalkonthewildside/

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  25. Krissy I am so glad to hear from you. I have been worrying about how yall were...I know how hard all this must be on you both but you know what??? You are one tough cookie AND I WOULD WANT YOU IN MY CORNER ANY TIME!
    Love ya,
    carlene

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  26. God bless you both!  Listen, when folks say "if there is anything I can do." don't just pat their arm and go on.  Name something they can do.  Something simple that will save you time or give you a rest.  -  Barbara

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  27. {{{ John and Krissy }}}}

    Know that my prayers are coming for you....

    be well,
    Dawn
    http://journals.aol.com/princesssaurora/CarpeDiem/

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  28. Thank You Krissy.  I have snagged the tag for John and will be adding it to my sidebar.  I know you will remember me in prayer and also Sugar. We are both praying for John.

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  29. Have added John's tag my friend.  I am so sorry he is going through all this.  I can imagine how exhausted you are.  I have not even had surgery or started treatment yet but the whole family are already tired from the shock.  Hang on in there.  John is a great role model, a real fighter.  God bless.

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  30. I hope that lump in John's arm gets better really fast and you are both in my prayers.  I'm glad that you are keeping a positive attitude and that you know you have to do what needs to be done.  God bless you.  And I love that you two are spending quality time together.  That is what it is all about.  John's lucky to have a special wife like you.  : ) Love, Shelly

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  31. Thinking of you my friend and sending lots of {{{{{{hugs}}}}}} to help you on your way.
    Loads of love
    Syvlia xxx

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  32. All I can say is I admire your strength & tenacity. Am glad you're trying to keep life as normal as possible. I would imagine that is so important.  
    Hugs, Barb

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