Wednesday, November 8, 2006

some goodbyes

Hmmm.  Let's see if I can keep this short because it is a little after one in the morning.  Probably not, LOL.

Today was a long day.  John had several tests and visits from specialists.  Both Dr. Ehmann, the rotating oncologist, and Dr. Claxton, his regular oncologist came in for awhile.  Dr. E. listened to John's lungs and announced to his students that there was no need for a CT scan, that he could hear something in John's lungs.  Then he asked the students to listen to see if they could hear it.  They each took turns.  John told me later he was grateful that he served some purpose for the student's education, LOL.

Dr. Claxton and Dr. Ehmann conferred and decided that John should probably get IVIG again and chemo to try to stop the Autoimmune Hemolytic Anemia.  He will get it after the pneumonia clears up.  I am hoping John will be able to get it at home and not in Hershey.  I like it here, but I don't want to live here over the holiday season!  I think it will take at least four weeks to be administered.  

So anyway, John went for a bronchoscopy today after seeing the doctors and it was two hours before he returned to the room.  I went upstairs and played around on the computer, answered alerts and such.  Then I grabbed lunch.  When John came in the room I was relieved to see him, he had made it through the anesthesia and had no collapsed lungs, LOL.  I know I can be so dramatic, but it seems lately if something can go wrong, it happens to John, so I started to get a little concerned while I was waiting for him, thinking about the complications the doctor told us could occur during the procedure.

Then John was told that his blood counts were so low, and that he needed two bags of blood.  He didn't get any yesterday because they were worried that the blood would move blood clots along.  But not being concerned about that today, they wanted to give him blood immediately.  So they hung the first bag of blood.  By this time it was 7 PM.  Poor John hadn't eaten all day because of tests and they had forgotten toorder his dinner and it was finally getting here at about 7 AM when somebody busted in the room and shouted at him "Stop, don't eat!  Put your fork down."  I think John had gotten one bite in, LOL.  I asked what the problem was and the nurse said John couldn't have food because he needed to get a CT scan.  I thought this rather odd as Dr. E. said John didn't need a CT scan.  So I made a mental note to ask what the CT scan was for.  Then a lady from transport with a gurney showed up, and she was trying to take John downstairs to have the scan.  "You can't take John off our unit," the nurse insisted.  "You will have to do the CAT scan later.  He is getting blood and could have a reaction, and you wouldn't know what to do.  He has to stay on this floor until he is done with the blood."  Then the nurse told the transport woman she could have John after one bag of blood, then he would get the CT scan, then he could come back upstairs and eat his dinner, then he could have his second bag of blood.  I calculated this all out.  This put John to winding down around midnight.  What a long day for him.

Anyway, then a pulmonary specialist doctor walks in.  She asked John a lot of questions.  Then I asked her why they were doing a CT scan on John.  She said during the bronchoscopy that they MAY have found something unusual.  But she wouldn't tell us what it was until after they did a CT scan and did some conferring (the doctors).  So here I am worrying, wondering the two worst possibilities.  Fungal pneumonia or a tumor.  I gotta cut this out.  My mind is getting carried away with me.  Anyway, they are going to let us know tomorrow I think.  

So on that note, I should probably go to bed.  I need to be bright for tomorrow.  It may be a long day.  There is so much I want to tell you all about, but don't want to ramble on and on.

Oh, I do want to mention that so called "lost item" is found.  It was probably never stolen.  That is good to know that those going through hard times wouldn't do that to one another.

And on a final note I would like to say goodbye to Rex, a stem cell patient who died yesterday.  You will be missed.  And so will you - Kay, Jay, Rhonda, Bill, Roger, and Duke.  Don't think that I didn't notice your passing these past few months.  I think I was just too numb to say goodbye to you all.  Many of you were in the core group who were here all these months John was here also.  Out of all of you who got stem cell transplants, John is the only one still left alive.  And maybe Phil, I am not sure if he made it or not. 

Rex, you were so humerous.  You had such a zest for life.  Goodbye Rex.

Kay, you were my best friend here at The Lodge.  We sat up every night and talked.  I loved you.  I still do.  Why did you have to go?  Goodbye Kay.  I believe we will meet again someday.

Jay, I love you immensely.  You were such a stellar guy.  Even among the Amish, there was not one as honest and as good as you.  I miss you.  Goodbye Jay.  See you in Heaven.

Rhonda, you made me laugh!  And you were always willing to play games with us on nights when we were bored.  Goodbye Rhonda.  Love you.

Bill, thanks for the kindness you showed me in offering me rides to the hospital.  You were such a kind soul.  Sitting there at the kitchen table in Hope Lodge in great health one day, gone a couple of days later.  Goodbye Bill.

Goodbye Roger.  Didn't know you long, because you died about a week after your transplant.  Too bad we didn't get to know you.  Goodbye Roger.

And finally Duke.  You were bigger than life.  You were as big as your name.  Many in J-Land will remember you because I told them how you did St. Patrick's Day for us here at Hope Lodge, and Italian Day.  You had everybody singing along and having a great time.  You will not be forgotten.  Goodbye Duke.

Hello John.      

35 comments:

  1. Thanks for the update Krissy.

    Greg
    http://journals.aol.com/radar446/PhotoTrek/

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  2. Wow Krissy....!  I just don't know what to say.  You two are in my prayers as always.
    Pam

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  3. kaydeejay544911/08/2006 2:08 AM

    Lots of prayers and loving thoughts headed your way.  
    Hugs,  Kathy

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  4. Oh Krissy, what a heavy load you have had to carry these last months.  I hope John has finally gotten through with his blood and gotten to eat something. Bless his heart.  Hope you can do the chemo at home.  I stopped to say a prayer for the friends you have had to say goodbye to and for John and for you.  I hope tomorrow is a better day.  We're thinking of you.
    Hugs to you and John,
    Barb  

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  5. Hoping that tomorrow brings good results.     You made a sentimental thought about each of your friends you made that died.     I know how much John enjoys reading and I hope he is getting in some good reading time while at the hospital.    Keeping you both in my prayers.     mark

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  6. keeping you both in prayer

    Deb

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  7. Remember to take it just one day at a time...and may you be blessed with many more HELLO'S.  'On Ya' - ma

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  8. May God bless you both and keep you strong today.
    hugs,
    Ellen

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  9. nightmaremom11/08/2006 7:18 AM

    {{{Krissy & John}}} sending good vibes and strength your way.
    love ya
    d

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  10. Sending some sunshine from the far north - sounds as if you need it over there. Keep us updated. Best wishes to the relatives of those who passed on.

    Guido
    http://journals.aol.co.uk/pharmolo/NorthernTrip

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  11. demandnlilchit11/08/2006 7:49 AM

    I wanted to say "Hello John" too!

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  12. dbaumgartner11/08/2006 8:01 AM

    Don't you hate it when the Doc won't tell you what they suspect until all the tests are done.  That's just cause for someone to worry and usually it turns out to be something that did not need worrying about.

    John has come a long way and is doing great.  You are doing fantastic and I do hope you and John will be home for the holidays.

    Deb

    ps  It's a shame the package I sent you at The Hope Lodge never turned up.  But, you never now.  Maybe the book was intended for someone else.  Maybe they needed it more.

    Hugs to you!!!!!

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  13. Continuing to pray!
    Michele
    http://journals.aol.com/glensfork4/these-are-my-thoughts/

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  14. midwestvintage11/08/2006 8:18 AM

    Krissy, your goodbyes were so touching and heartfelt.  I want to say hi to John also, Hi John, be well John, prayers are pouring your way.

                        Julie

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  15. quartrlyfecrysis11/08/2006 8:27 AM

    I really hope you get some good news from these rounds of tests.  You're both in my prayers.  You two take care.
    ~Bernadette

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  16. Oh Krissy, I hope that today FINALLY brings you some good and hopeful news.  You are definitely deserving of it at this point.  I will keep you and John in my prayers all day.  Your good-byes were so emotional and so sad.  You have been through alot while you have been there and it amazes me that you are still so strong.  

    My thoughts and prayers are with you today and I am also sending you enough ((hugs)) that you can share them with John too!

    Let us know what happens with the Dr reports today.

    ((hugs))
    Jeanne

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  17. Krissy, you are not being overly dramatic....I do not know how you do this!!!!! YOU are such an inspiration to me!
    Becky

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  18. Krissy, this was perhaps the most beautiful entry you have ever written.  When I read, "Hello John" the tears flooded.  You are a beautiful writer, honey.  I am sure they are up in heaven reading this, honey.  I am talking to Chels on the phone right now.  Just told her how you guys were doing.  She sends her love and prayers.  She says, "I love them and Josiah says hi.  He smiles all the time now.  I will send pictures of Josiah to you very soon."  So, call me if you want, baby!  I miss you guys soooooooooooo much!!  Love and many prayers!! xoxoxoxoxox
    http://journals.aol.com/valphish/ThereisaSeason

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  19. What a touching entry...you are so very strong.

    ~Debbie

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  20. hugsdoodlewacky11/08/2006 10:17 AM

    (((((((((((((((((((HUGSTOYOUBOTH)))))))))))))))This is a beatiful entry,it must be so hard to deal with all your going through.We all love and pray for oyu here at J-land.Have a ncie day.

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  21. i hope they found nothing important in john's test.  my prayers are still with you guys
    noelle

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  22. One moment at a time Krissy. That is all we have control over. Rest now. Tammy

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  23. Thanks for the update...I so admire your attitude and strength.  

    Nancy

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  24. littlelady169911/08/2006 11:29 AM

    kriisy how do you do it????you are truely amazing!!!!John sure is lucky to have you for his wife. keep a chin up. Remember its > 1 hour a time, 1 moment at a time! . Isn't that what the wife of Steve Irwin said.
    don't worry about things, just  relax..god is there for you.

    patty

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  25. The last part of your entry brought tears to my eyes... Hang in there kid, I have my fingers crossed for only good news tomorrow!
    http://journals.aol.com/astaryth/AdventuresofanEclecticMind
    http://adventuresofaneclecticmind.blogspot.com/

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  26. Krissy,  My heart goes out to you and John.  What a hell you have been through.
    The stress of it all is huge.  I know John will be ok because he has made it this far.
    Your goodbyes to your friends made my emotions come to the surface and then when I read "Hello John" those emotions spilled right out.  I love you both and you are always in my heart and often on my mind.  The prayers are working too.
                                                     Love and Hugs   Myke

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  27. Dear Krissy~I hope your stay this time will be a short one; thinking of you both and praying for John's continued healing. also I hope all the days will not be as long as this one was! xox Deb

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  28. Love and miss you both, many prayers in the air always coming your way.  I'll be in the Gazette for you.  CATHY

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  29. Hugs & hope for you and John.
    Lots of love Sylvia xxx

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  30. Boy what a day for John.  What a tough reality you and John are facing each day.  Makes other realities seem so easy, in comparison.  But this informative well written entry tells us what it is like to walk in your shoes, and what John must be going through.  The good-byes you said to the other patients you knew were touching.  Brave souls.  I wish you strength to get through these trying days.  Gerry

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  31. jlocorriere0511/08/2006 5:28 PM

    How sad to see that so many have died Krissy. I expect they're all up in heaven willing John on to recovery. I hope the catscan doesn't find anything bad. That was a long day for him, poor soul. Jeannette xx  

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  32. lifesabench611/08/2006 8:57 PM

    I don't knwo what to say Krissy- I'm still praying.  Please take care, and lots of Blessings from the Lord tomorrow.  You're both in my heart and on my mind.  Carolyn

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  33. You and John are still in our prayers.  I know it's hard, but I know you will stay strong.      Dawn

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  34. So sad to say goodbye to so many dear friends.  
    Don't worry yet about what is going on.  I know it is hard.  And get some sleep!!!  Jae

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  35. princesssaurora11/09/2006 2:27 PM

    Your goodbyes brought tears to my eyes....

    be well,
    Dawn

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