Tuesday, July 15, 2008

Bad News in My Blood Test Results

For several months recently my blood test results were quite good.  They showed that I was doing well in many ways, and especially that my immune system was stronger than it had been since before my bone marrow transplant.  My oncologist at Hershey Medical Center was so pleased that he reduced my blood test schedule from once a week to once a month.
 
Then, about three weeks ago, my lab results showed that my neutrophil count had fallen well below the normal range, which meant my immunities were low, and were actually on the edge of being dangerously low.  I waited a week, all the while wondering if my immunities were getting weaker or stronger.  But after a week, I felt that couldn't wait the remainder of a month to see how I was doing.  Hershey's Post Bone Marrow Transplant Coordinator, the person I call when I have a problem, was away on vacation.  Since I couldn't reach her, I turned to my local oncologist's office for help.  One of the nurses there said that I could have labs done twice a month for a while, since my neutrophil count was low. 
 
I had to wait another week, but I had the labs done.  The results showed that my neutrophil count was very low, much lower than it had been two weeks before.  This means that I will have to stay in our apartment almost all the time, and when I go out I'll have to wear a surgical mask everywhere.  I'll also have to wash my hands frequently and use hand sanitizer often.  I can't have fresh fruit or vegetables, I can have no fast food, and I must avoid crowds of people. 
 
My wife Krissy called Hershey to see if I could have a Neulasta shot to raise my neutrophil count.  We learned that not only was the Post Bone Marrow Transplant Coordinator still on vacation, but my oncologist was also on vacation and wouldn't be back for two weeks. 
 
The doctor and nurse who are filling in for them don't know me.  They said that since my neutrophil count is so low two and a half years after my transplant, it could mean that I'm having a relapse of cancer.  If that's true, a Neulasta shot could further damage my bone marrow.  They said I'll have to wait until my oncologist returns and determines what's wrong with me.  I have an appointment to see my oncologist on July 28.
 
I'm not too worried about the possibility of a relapse.  The substitute doctor and nurse may not fully appreciate how much of the last two and a half years I've spent with a dangerously low neutrophil count.  Even though I'm not a doctor, I'm reasonably sure that the cancer isn't back.  My oncologist has told me many times that neutropenia (a dangerously low neutrophil count) can be caused by something as simple as a mild viral infection which you may not even be aware that you have except for feeling tired.  I have been tired lately. 
 
I have a feeling that when I see my oncologist on July 28, he'll tell me that my cancer hasn't come back.  I think he'll say that the substitute doctor doesn't have his personal experience with my condition.  If I'm still neutropenic at that time, I may get that Neulasta shot.
 
Even though I'm not worried about cancer, I have to be cautious about being neutropenic.  I can't afford to get sick.  With such low immunities, any infection could be very dangerous.  The last time I was neutropenic, I got a blood infection that sent my temperature up to 104.4 degrees and kept me in the hospital for a week.  This time I haven't felt sick -- just tired.  I hope it stays that way until my neutrophil count returns to normal. 

36 comments:

  1. ((((John)))) and ((((Krissy)))) thanks for the update John; I'm praying that the cancer is not back and that it is a 'simple' explanation like you said with a viral infection

    keeping you guys in my prayers,

    betty

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  2. I'm glad that you have an appointment, John.  I already know that you will be careful.  Rob and I will keep you in prayer.  Blessings, Penny

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  3. So sorry to hear this.  Will keep you both in my prayers.  I guess you can kick back and watch some movies or daytime TV. Or do you like to read?  We'll be waiting to hear what your regular doctor has to say when you see him.  Meanwhile...keep looking ^.    Holding you up in prayer,  Linda in Washington state  

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  4. Sending up prayers for you John, I pray that your regular doctors will be back soon and can give you some answers and that you are going to be ok. May God heal whatever is wrong. Helen

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  5. John, stay strong as I know you are. I will be praying for you.  What a shame that your specialists are on holiday.  In the meantime do what you have to - shield yoursel from infection and stay positive.  You have so many in J-Land willing you on.

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  6. Hi John & Krissy,
    I'm sorry to hear that things are not going so well for you, I'm sure this will be a very long 2 weeks for you until you get to see the oncologist, I hate waiting!
    I will be thinking of you and will keep fingers and all else crossed for you in the mean time.
    Sending you love and a big hug
    from Maria
    Norfolk UK

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  7. The alert did come though for your journal entry. Try to rest and hopefully whatever is causing the low count will take care of itself and your readings will be come more normal again.  I'll be praying as always.  'On Ya' -ma

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  8. A worrying two weeks ahead for you, John. You will know more on July 28th, and until then you know what precautions to take. Strength to Krissy and yourself.

    Guido

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  9. Your oncologist is right, John--neutropenia can be caused by a lowgrade viral infection. You might just have a cold! Until you find out for sure, you know all the precautions you'll need to take. Hang in there!

    Beth

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  10. sending good vibes your way...  hoping it is just a little cold or something...  keep your strength and follow the rules you know.  Hugs and strength to you and Krissy
    d

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  11. I agree with your doctor and you have the frame of my. Keep it up. I have been praying for you and continue to do so.
    Laini

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  12. John- healing, comforting thoughts being sent to both you and Krissy. During my mother's journey with NHL, she used to say "The One that controls everything and loves me so much knows every little detail of what is going on in this body.....even when I don't. What a relef that I do not have to know or worry about it." I mention that because I think it is such a comforting thought for anyone who does believe in God, which i get the impression you all do. You've got all the precautions down pat......good luck through this waiting period.....prayers will be going up for this and the tests to follow.
    ~Cathy

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  13. hi John~
    this is my first time here
    guess you can eat frozen and
    canned fruits and vegetables
    at least God doesn't go on vacation
    I'll say a prayer for you...

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  14. Keeping you in my thoughts and prayers John and Krissy too!

    Waiting is so hard!!!!

    You will get through this!!!!

    Love,
    Michelle

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  15. John, thanks for the update.  I'm so glad that you have a positive attitude about the cancer NOT coming back, I truly believe that really helps.  We have awesone mental capabilities!!  Anyway, I'm keeping you in my prayers, I hope that you will feel better and gain some strength soon.

    Joann

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  16. John, I having been praying for you constantly.  Thanks for the update and the explanation.  I love you and Krissy more than  you know........ much love, Val xox
    http://journals.aol.com/valphish/ThereisaSeason
    http://journals.aol.com/valphish/JoyInTheRain

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  17. Will be praying everything is okay John.
    Hugs,
    Dana
    http://journals.aol.com/heavenlybama/journey-to-success
    http://journals.aol.com/heavenlybama/my-photo-lounge

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  18. You are in my prayers!
    Missie

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  19. Hey John,

        Sorry about the bummer counts.  It figures when our doc's are out of town our bodies do funky stuff!  Great attitude.  I am sending up my own prayers and happy thoughts your way.  Keep in touch.
    Michelle,www.bmtsupport.org

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  20. Oh John, keeping you in prayer and remember to laugh it does help:) if i can do anything let me know ok?

    Deb

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  21. John...I'm sorry you are having such a rough time right now.  I know that I have some sort of virus myself right now, so maybe you are right and you just got a germ in you.  Hopefully it will not materialize into anything significant.  Get plenty of rest and drink plenty of fluids...and keep yup your positive attitude!!!  I know that cancer doesn't have a chance in this world or returning with your fight!!

    ((hugs))
    Jeanne

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  22. John keep positive, you're in my thoughts and prayers dear. Do whatever you have to do to keep your immune system up.  Here's hoping you hear good news on July 28th and that your cancer hasn't come back....you've been thru so much that I'm sure you know when your body isn't feeling well, so feel you'll be right on the cancer not returning.  Know my Cardiologist said I need to have a catherization for a blockage, I didn't, last year said I need to consider having a pacemaker...I said prove to me that I need that, had every test rerun, I didn't need one.  Now my Cardiologist says to his nurse on the last visit, this lady knows her body, if she says she's ok, I believe her.  So hang in there, we live with our bodies and believe we know when something isn't right.  Bless you.  Arlene (AJ)

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  23. I am sorry to hear your news.

    You and Kristy are 2 of the most "look on the bright side", "God will get us through this" I have come across.

    Keeping you in my prayers.

    Kathy

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  24. John, I'm sure you are right and when your oncologist gets back he'll give you the Neulasta and everything will be fine.  Will be keeping you in my thoughts.  Please take care!
    Lori

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  25. I'll add extra prayers.  
    Kellen

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  26. Only you know how you feel, and if you don't think the cancer is back then you might be right. I surely hope so.
    Keep up the good fight John.
    Pam

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  27. (((((((((JOHN)))))))))))))))))))))))))))))))))I g ree with the other comment,only you know your body nd I pray you are right.I m prying for you.

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  28. Praying good results, simple answers and health!  - Barb ara

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  29.     Good luck to you with this. You are in my prayers.
    Jude
    http://journals.aol.com/jmorancoyle/MyWay

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  30. hi, i hope everything goes well for you, i will keep you in my thoughts.
    take care mrs t xxx
    http://journals.aol.co.uk/mleppard06/eternity/

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  31. Hi John!

    I came over from the Call for Support journal.

    I know Krissy from her journals.  I am hoping and praying that your levels come back!  Take care!

    Hugs,
    Gina
    http://journals.aol.com/motoxmom72/GinasWeigtLossJourney

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  32. OOPS...hoping your neutropenia levels come back UP!!  Silly me!!!

    Take care,
    Hugs,
    Gina
    http://journals.aol.com/motoxmom72/GinasWeigtLossJourney

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  33. OOPS...hoping your neutropenia levels come back UP!!  Silly me!!!

    Take care,
    Hugs,
    Gina
    http://journals.aol.com/motoxmom72/GinasWeigtLossJourney

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  34. John -- while I don't often get to all the journals I mean to, know that I've had you in my thoughts for a long time.  I "know" Krissy, who is of course rather popular online here!, and I know you both try to stay positive.  Hang in there -- may your day today be a good one, your tomorrow be even better.  God be with you, and Krissy.  -- Robin

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  35. John

    I am so sorry that i am late in my entry , am way behind with alerts.
    I am so sorry to hear this news, Keeping you in my thoughts and prayers.
    Hugs Jayne

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  36. John, I saw this before we went on our trip, but didn't have time to respond. This could be serious and bad news.  But I know you are taking good care of yourself and there is nothing more you can do.  I have to hand it to you, I don't think I could ever be as positive and upbeat as you are given the circumstances. John Knox, do you know, it is indeed a great priviliedge to know you & I am so honored to call you & Krissy my friends!  Hang in there & keep me posted!!  Merry

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