Saturday, September 2, 2006

Trying a new treatment - chemo

I didn't realize it has been so long size I have made an entry.  Sorry.  There have been lots of reasons.  Computers at both the hospital and Hope Lodge have been down at different times.  One night I had to stay all night with John at the hospital while he got blood and chemo, making sure he didn't have a reaction while receiving either one.  Actually, I stayed the whole day, all night, and the next day.  Another reason I haven't done an entry in days is I have just been too dog tired.  I stay with John from about six in the morning till eight thirty at night, and when I get back to Hope Lodge, I am often too tired to do an entry.  Often I can't get on the computer during the day, because I can't leave John's side.  So if I don't get on at night, I don't write.

Okay, so here is what's going on.  The IVIg treatment didn't work.  The oncologist came in and told John and me yesterday.  He said they were going to try a treatment called Rituxin.  It is a chemo.  John is to get it for 4 to 7 weeks.  One day a week.  Actually, he has already gotten it twice, during weeks when he had IVIg.  So he is on the way to possible good health already.  The oncologist said it often takes three or four weeks to see if it is working.  

Right now John is still requiring about two bags of blood a day.  And he is still on dialysis.  On a good note, there is a possibility, the kidney doctors have told him, that he may not have to be on dialysis for the rest of his life!  Praise God for that. 

Another really exciting thing is that John was moved out of the Intermediate ICU into a regular room!  He is getting stronger, and is finally able to sit in a chair to eat his meals.  He also walked a little bit down the hallway yesterday for the first time in about two and a half weeks with the help of a physical therapist!  I was astounded as he was so much stronger than when he was in the Intermediate ICU.  And he is no longer hooked up to all those wires!  He is hooked up to machines at times, but it is so much better now!

Having said all that, the doctors all still puzzled as to why he is needing the two bags a day if he seems a lot better.  His platelets are also very low.  He may get platelets tomorrow.  And he had a bad experience with dialysis yesterday (Friday).  But I won't go into all of that right now.  Just pray that he won't have a bad experience again tomorrow (Sunday).  Thanks.

Okay.  So how have I been?  On a rollercoaster!  One day the doctors give me good news, the next day bad, the next day good, the next day, bad, then good - you get the idea.  But I do remain pretty steady through it all, because you have to.  And through it all I have been tremendously uplifted by you all in J-Land, with your comments, your entries to me in The John and Krissy J-Land Gazette (that's the journal Tammy created for  John and me!), and by the blood that those in J-Land are giving in John's name.  John and I are so moved by the blood given.  Oh, and I can't forget the snail mail we are getting!  How truly thoughtful of you all.  Our hearts are warmed, and we don't feel alone.

Well, I better go now, I was just falling asleep.

I love you all, Krissy :)   

31 comments:

  1. Good news!!
    Big hugs!!
    Love you too!!
    Linda :)

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  2. That is life for you - what a roller coaster !  All we can do is hang on for the ride !  I can tell you are tired and have a good reason to be.  I'll be praying for John and also for you that you are blessed for the strength needed for this roller coaster you're on.  God Bless you Both.  'On Ya' - ma

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  3. We miss your entries but totally understand.  We are still here, praying and waiting for more good news from you & John.   Be sure you get enough rest and good food while you keep those long hours at John's side.  Linda in Washington state  

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  4. nightmaremom9/02/2006 11:17 PM

    {{{{{{{{Krissy & John}}}}}}  You both remain in my thoughts and prayers.  This appears to be really good news and I am thrilled.  Take time for you when you can.  We love the updates, but you and John are so much more important.
    Love you
    d

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  5. tendernoggle9/02/2006 11:22 PM

    My prayers  are still with you both..Know that we are all here..we will not leave you..take your time, rest, and when you have time and feel like it, let us know how you both are...
    God bless and keep yu.
    love ya,
    carlene

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  6. Oh Krissy. Praise God, it sounds like a bit of good news finally.  Sending lots of love & prayers because I cannot donate blood.  But know I'm thinking of you. Take a little time for you as John gets stronger.  Even if it's just to take a hot bath or get a manicure or take a walk.  
    Hugs, Barb

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  7. springangel2359/02/2006 11:34 PM

    Came by on a hunch, that you had something to update about your dearest John, our friend, and your loving husband.  I can see why the doctors are confused with the two bags of blood...but the good side is he is coming along...out of the section he was in...praise the Lord on no perm dialysis...that was great to hear...you have some awesome doctors looking after John....always know we love you both...I looked back on my, day one journal entry Krissy, and you were the only one that said a word to me.  You both are in my prayers and thoughts daily...hugs and love you both...Joyce

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  8. Glad we got a little time to talk tonight, hope you get some rest!  CATHY

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  9. shanazdrojowy9/03/2006 3:43 AM

    God bless you.  Is it possible for blood donated to go directly to John?  Or does any blood donated (regardless of the type) help out for what John is using?  Hang strong and keep the faith!  Shana in Georgia

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  10. rocketman6854349/03/2006 6:49 AM

    Hey you don't need to appologise for not making an entry.You have got good reason.Good luck with all John's treatment.Thinking and praying for you both.

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  11. You're excused from making regular entries, Krissy, it is a hard time for you both. I'm pleased that John seems to be on the way up. The Rituxin is a mono-clonal antibody, which attacks something quite specific that needs dealing with. I'll find out more, if you like. It is very good news that John is now out of intermediate ICU and is back on his feet. Two bags of blood a day at least is an improvement on the 7 from last week - but this is a difficult thing to get on top of. Hang on in there!

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  12. The news about John is one of admiration for his continuing to go through treatment that would make someone like me a wreck.    He is luckey to have a wonderful wife there by his side.    I had an MRI and will get the results this Tuesday on what the physical therapists are indicating is a ruptured disk in my lumbar spine.     I can't work on my home construction addition due to my bad limp in my left leg and severe hip pain.    I had hoped to get the roof on by winter and my worker is being supervised by me with the funds I have left for the project.    This set back is depressing me but I think of what John has to go through and know how strong he is to endure everything.    My thoughts and prayers for him and you to make it through this difficult time.    mark

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  13. I cannot give blood because due to the elevated live enzymes I had in 1995.    For some reason even though I did not have hepatitis I am not elibible to donate under the Red Cross guildlines.     mark

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  14. You just take care of yourself friend. Rest all you can. We aren't going anywhere. Tammy.

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  15. hi krissy...don't worry about not making an entry.  everyone understands...you need to take care of you, too!  keeping the two of you in my prayers.
    http://journals.aol.com/rbrown6172/Ginasspace/
    gina

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  16. quartrlyfecrysis9/03/2006 8:55 AM

    I'm so glad that John is up and about :)
    my thoughts and prayers remain with you two.
    You take it easy and take care of yourself and your wonderful husband~
    ~Bernadette

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  17. midwestvintage9/03/2006 9:03 AM

    Krissy, I am so glad John is stronger.  I tried to post to Tammy's journal and just couldn't figure out how.  I was ill at the time, probably is very easy.   Take care of yourself and John.  Still sending those daily prayers.

                           Julie

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  18. wow so gald  to hear john is up and about, good to hear he is getting stronger!
    continued prayers to the both of you!


    Sharon

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  19. love2sing20079/03/2006 10:35 AM

    I'm so glad things are looking up!  It lifts my spirits!  Praise GOD!  I don't know how you do it.  We're all praying as hard as we can!  
    Much love, Kellen

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  20. Krissy,
    Good to hear from you!   Stay positive and hopeful...it's a great attribute you two have.

    Love,
    Nancy

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  21. hope things keep looking up.

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  22. Just letting you know I think about both of you, every day!  It is gresat to hear he is getting stronger, each day.  What a fighter he is!  Love to both of you...Jae

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  23. dbaumgartner9/03/2006 12:28 PM

    Hugs to you my friend.  Again, I say "don't forget to take care of yourself"  Regroup and let your body rest.  You need your energy and you need your health.  Take a moment for yourself.

    Hugs my dear sweet friend

    Deb

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  24. jlocorriere059/03/2006 12:46 PM

    I would think you're mentally drained Krissy. You and John have been through such a lot together. I do hope they're right about the dialysis not being permanent. Also hope this new course of treatment will work for John. Don't worry if you can't post an entry, we understand how tiring rhis is for yo and John. We can wait till you feel OK to do it. Love, Jeannette xx  

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  25. Krissy,,,don't worry about us! we understand!
    prayers, hugs and love
    Becky

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  26. We TOTALLY understand how you must be tired and getting on the computer is NOT one of your priorities! Much as we love hearing that John is doing better (and we DO like hearing that!), we also understand that you are probably not only incredibly busy, but on an emotional rollercoaster that must be taking it's toll also.

    So, hang in there, post when you get a chance and know that we are all sending as much positive energy your way as we can!

    {{{{{{{{hugs}}}}}} for both of you!

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  27. sugarsweet0569/03/2006 5:58 PM

    Praise God! Will continue praying for the both of you. :)
    Just stay strong, never lose faith, & remember God is in control.
    Blessings,
    Sugar

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  28. You are both in my prayers.
    hugs Barbara

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  29. eternallife239/04/2006 11:11 AM

    You guys are in my prayers.
    Louise

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  30. I'm glad John has some strength and could walk.  That's a big plus!
    Hang in there Sweetie!  I love you both!

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  31. newsworthy8229/04/2006 8:54 PM

    Both of you are in my thoughts & prayers all the time. I am glad this new treatment is showing promise. I hope it will turn things around for the better. Great news about the dialysis.
    Love & HUGS
    Melissa

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