Friday, August 1, 2008

John's cancer is not back!

John and I are back from Hershey Medical Center and wanted to share the extremely good news with  you.

John's cancer is not back.

Also, his kidney damage that he had sustained, in the past few weeks, is most likely  reversible.


The kidney damage was due to a medicine called Sirolimous, but the medicine is not that potent, and the damage should be reversible, once John stops taking it.

John will still only have about 30  percent kidney function after he stops the Siro medication.  John's
been living with 30% kidney function for a year or so anyway.  But that's okay, because you have to get down to 15% kidney function before you have to go on dialysis.

That is what John's local nephrologist (John's kidney doctor, Dr. Donelan) told John recently, anyway.  That he would wait until John's kidney function dropped to only 15 percent before putting him on dialysis. 
So IF John ever has to go on dialysis, it won't be for awhile. 

Dr. Donelan insists John will have to be on dialysis in four to 20 years, but he doesn't know John, LOL. 
Maybe John can avoid dialysis altogether in his lifetime.
  Because he is stubborn, and he has great tenacity, and he has the Lord.

Anyway, Dr. Claxton is taking John off the Siro, the culprit of John's serious kidney trouble as of late.  Within three weeks, John will be off all anti-rejection drugs.  The reason John was taking these drugs in the first place was to suppress his immune system, so that he wouldn't reject his donor cells (that he received from his bone marrow transplant), or rather so his donor wouldn't reject him. 
John will be off both the Tachro and the Siro anti-rejection meds by three weeks from now.  And John shouldn't reject his donor at that time because he has been doing so well. 

So what I am trying to say is that John's kidneys should improve, as he will no longer be on the Sirolimous.

One more thing.  Dr. Claxton is very pleased with John's weight.  He just wants him to walk.  And go swimming.  He mentioned that we should do it together.  Yes, I need to lose weight and get in better shape also.  John is allowed to go swimming for the first time in two and a half years!  Praise God for that! 


So anyway, overall, Dr. Claxton is THRILLED with John's progress.  For two and a half years John is doing great!  

Oh, just one more thing.  After Dr. Claxton mentioned how great John was doing, he told John he had too much iron from the blood transfusions he has had (over 100 of them).  This iron overload has caused John too have too much iron in his blood.  This was indicated by a high Ferritin level score.  A man should have a score of close to 300, he has a score of close to 3,000.  High iron like that may very easily cause liver and pancreas damage, and can also cause diabetes.

Dr. Claxton is going to give John a new med to reduce the high Ferritin score and get rid of the extra iron in his body, if John's insurance company agrees to pay for the medication.  The new medication costs a couple of thousand a month, at least.

We went to Dr. Ford (John's local oncologist) yesterday, and he said he was concerned about Dr. Claxton giving this med to John.  Because it could damage John's kidneys even further.  It would clear up the problem of John's liver being damaged, and his pancreas, and John getting diabetes - but it would further damage John's kidneys.  Sigh...

So overall, we have a very good report here, but with some complications to deal with in the future.  John and I will just take things one day at a time, and be thankful John is alive and doing well today! 

Okay, so it is a pretty good report.  But at the same time, there's something I am still having trouble dealing with.  Most of those who had a bone marrow transplant (stem cell transplant) when John had his, have since passed away.  John and I are still wondering why he is doing so well, and they died.  It's hard.  I know, you probably want to tell me, "Well stop questioning it and just enjoy it."  But it is not that easy. 

We see something that reminds us of a particular person we had been close to, like hear a song they liked to listen to during chemo, and then we have a real hard time.  I hear the Bee Gees and think of Kay.  She was my best friend at Hope Lodge.  She was loads of fun, and in her late 60s.  I see Angus Burgers in the supermarket and think of Rex.  I can remember so many others also, so many who didn't make it.  And now so many things cause me so many memories and flashbacks.  John gets very quiet at times, I just start to quietly cry.  I don't know.  

I am trying to celebrate the person, not concentrate on the end of their life, but it is still hard.  And I guess there is the survivor's guilt.  Maybe it's not even Survivor's Guilt.  Maybe I am going through some Post Traumatic Stress.  It has been two and a half years on this road.  Maybe I am just a little bit sad.  I think I am entitled.  I hope it doesn't get out of hand, and ends soon...

Okay, this entry is getting too long!  I just wanted to let you know how things were going with John. 

I love you all,

Krissy :)

30 comments:

  1. ernhrtfanalwys38/01/2008 1:23 PM

    Awwww gf that is wonderful news. I am so happy for the both of you.  I really hope John continues to get better. It makes me very sad when John relapses or just doesn't feel well. I'm thinking to myself when are these people going to get a break in life! Keep us updated and thank you for sharing all this Doctor info with us.

    Hugs,
    Antonette
    http://jottingsfromjersey.blogspot.com

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  2. WHOO HOO, that is absolutely wonderful Krissy.  How wonderful is God?  I am so happy for your both.

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  3. Great news to greet me on this day!  I love to read about people getting over their problems, physical and emotional.  It's a reaffirmation of life.  Good for you and John.                D

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  4. Great News.  Good bless you both :o)

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  5. I believe God keeps us here for a reason and when that reason is fulfilled he takes us home. God has more in store for John, something he is supposed to do, maybe to be an encourager to other people .

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  6. Krissy was glad to hear John's cancer is not back and they can't help him with reversing the kidney damge, etc.  John and you have been in my prayers and thoughts. As for the Survivor's Guilt on John doing well after his bone marrow transplant and others you both knew passing away.  Why is John doing so well....count it as a blessing that he's helping others as time passes.....things that have worked for John could work for someone else, through how John is doing the medical field can try similar treatment or trials on someone else. John making it is a future helping blessing for others that might not have had a chance for "Hope". Look at is as your John is a Guardian Angel helping others to hopefully have a tomorrow. Arlene (AJ)

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  7. Krissy meant glad they can help, not can't.  Arlene (AJ)

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  8. I'm doing a happy dance for both you and John!
    Missie

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  9. That's great news for you both. You must be so relieved!

    B. x

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  10. THANK YOU LORD!!!!!! answered prayers for sure!!!! (now how are you doing Krissy, I prayed about your MRI)

    the Lord has a purpose and a plan for Joh's life; he has not completed that purpose and plan and that is why John is doing good; I don't know why one is spared and one is taken, but this is where trust comes in

    so glad John can do some fun things like swimming too!!!

    just so happy for such a good report!!! the Lord is going to continue to work in your lives; just allow him to and sit back and enjoy the ride :)

    betty

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  11. Congratulations, Krissy, and of course also to John.

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  12. No Cancer!?! Now there's something wonderful to celebrate!

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  13. This was good news to say the least.  Lots of it I knew from our IM conversation.  I am sure that you would have to deal with Post tramatic stress, and also Survivor's guilt. But you'll get through this together.  I am so glad things are finally going well for John.  

    Krissy, you know I am a Scorpian and a good swimmer.  Swimming would be very good for both of you!  Check out with your doctor about your shoulder, first, though.  You said something about John's weight. I didn't understand whether the doctor liked or did not like his current weight.  Just curious (not that it is my business. :)  Love you, Merry  PS Don't forget you promised to keep me posted on YOUR health issues, now.

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  14. cherry2sweet2eat8/01/2008 9:42 PM

    thats great news. Im so happy that his cancer isnt back and that the kidney damage is reversible, just a little worried but he is a strong man and i know he will hang in there through thick and thin!

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  15. wonderful news about john. see ya in 2 weeks when i return back on line. (((((hugs)))))
    Love ya,
    Cindy xoxoxo

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  16. I am so glad you stopped by my J.... I have not gotten any of your alerts in a while and began to worry! I have only gotten a fist full of alerts all week! What's up with that???
    Thats great news. Im so happy that his cancer isnt back and that the kidney damage is reversible.


    Sharon

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  17. helmswondermom8/02/2008 12:23 AM

    I am so glad that John got good news -- for the most part.  I'd deal with the other things if and when they come up.  The best news is that the cancer is not back, and the kidney damage can be mostly reversed.  I think your theory about having PTSD could be right.  You guys have been through so much.  Of course it's going to be hard to deal with the memories of the others who didn't make it.  I think that is normal.  Hopefully it will get easier in time.
    Lori

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  18. Krissy,
    Wjile John was having his trans-plant done so was the girl next store to me
    . Her name is Christina and I'm pround to say she is doing wonderful. She is 34 years old and they (DR) said, she would not  make it to 34.
    So Krissy others do make it too.
    PRAISE THE LORD!!!!!!!!!!!!!!
    So very happy for John and you............

    eileen

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  19. that's great news!

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  20. kristijohnson728/02/2008 10:05 AM

    Fantastic news!  I am glad to hear he is doing well.

    The feeling sad at things that remind you of lost friends is normal.  I would guess that you have been so caught in ya'lls own battle for survival that alot of the grieving for your friends has been put off until recently as things start to relax a little for you.  I have bouts of it when I run across things that remind me of lost loved ones decades later.  You will have some really sad times over memories of them and you will have some laughs over memories of them.  In time you will find the balance.

    Regarding the iron in the blood.  Is there any chance that dialysis could clear the iron out of the blood and give his kidneys a chance to rest and rebound?  Kind of like how some heart patients experience a recovery when put on a heart pump?  I think it might be worth asking your doctor if you haven't.  Dialysis is miserable I am sure, but if a temporary stint of it could save his kidneys.....

    Anyhooo....Cancer free!  Yippee!

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  21. nightmaremom8/02/2008 11:50 AM

    YEAH!  I am so very glad to hear this news Krissy... hugs to both of you
    love ya
    d

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  22. firestormkids048/02/2008 12:04 PM

    Praise the Lord for the good report!  The complications will work themselves out, Krissy.  God already has the plan.  We just don't see it most of the time until we're past it.  BTW Itdoesn't hurt to grieve those who have passed.  Eventually all the fondest memories will overshadow you griefs.  I love you and miss you,  Penny  http://journals.aol.com/firestormkids04/FromHeretoThere/

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  23. Good to know that John is doing much better now, Krissy.

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  24. Sounds like things are going pretty good for you and John.  that is very good to hear.

    Greg

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  25. cacklinrosie1018/03/2008 5:17 PM

    Everything will work itself out, Krissy.  John will get the needed meds and keep trucking.  He is here for a purpose.  Survivor guilt is so common.  But John's time is just not up.  Love you, Chris

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  26. We are all given each day as a gift.  Do try to accept it for what is is.  A precious treasure.  There are many questions we'll never know the answer to, but one thing is for sure and that is today, this moment, this wonderful gift.  Celebrate it and enjoy it.  'On Ya' - ma

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  27. sugarsweet0568/04/2008 3:45 PM

    So happy to hear the good news & the rest will come, Praise God!
    Hugs,
    Sugar

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  28. WONDERFUL news!!  Praise God~He is soooooo good !!!  Linda in WA

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  29. Krissy,

    That is fantastic news.............. Thank God
    hugs Jayne

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  30.     I am very happy for John. Thank God he doesn't have cancer. I'm concerned about you though. This could be PTS, or it could be you coming down after 2-1/2 years of dealing with his illness and yours. It's stressful, and you know it better than most people. It might not hurt to talk to someone.
    Jude
    http://journals.aol.com/jmorancoyle/MyWay

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