Numbers

Just frustrated these days. Met with Dr yesterday. My numbers are slow to recover and it ticks me off...they were doing so well.

He talked yesterday about giving me a double transfusion of platelets to get my count high enough to get my port out, but then the schedule they gave me doesn't have me going back until Monday. I should be happy to get a 4 day break, but it really had my hopes up of getting these tassles taken out!

Oh well, it is what it is but it still is frustrating!

Take care,
Beth

Comments

  • miss maggie
    miss maggie Member Posts: 929
    frustrated
    Dear Beth,

    I really understand and hear you. It's one disappointment after another. Even though you
    might expect something to always come up, you never get used to it.

    You have come so very far, and eventually hopefully it will end. The doctors have your
    best interest at heart. If the numbers are not right, you will go home feeling terrible,
    and might have to return for a hospital stay, or worse.

    If you can, enjoy your 4 days break. Always in my thoughts and prayers. Love Maggie
  • KC13167
    KC13167 Member Posts: 215
    Grrrrrrr
    That's all I've got to add.......Grrrrrrrrrr! It can be so frustrating !

    Soon, brave Woman, soon.


    Kellie
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    Numbers
    Beth,
    I can only imagine how you feel about the numbers.They are still going up and thats is great.I assume the numbers did so great in the beginning because it was something your body was waiting for. Now that your body is getting used to it has slowed down.Hopefully all will pick back up shortly. John
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    COBRA666 said:

    Numbers
    Beth,
    I can only imagine how you feel about the numbers.They are still going up and thats is great.I assume the numbers did so great in the beginning because it was something your body was waiting for. Now that your body is getting used to it has slowed down.Hopefully all will pick back up shortly. John

    Shots
    John, they were only coming up because of the neupogen shots forcing my bone marrow to work. Now I am no longer getting the shots so it's just a waiting game for my marrow to start working on it's own.

    Friggin scheduling nurse messed up and didn't call my cell number which she even asked for when I left. Tried to make it my fault that she left the message on my home machine when I am not staying at home. Said she spent all kinds of time making phone calls and arrangements to get the transfusions and scheduled with radiology to get my port out. I am SOOOO ticked off.
  • forme
    forme Member Posts: 1,161 Member
    dixiegirl said:

    Shots
    John, they were only coming up because of the neupogen shots forcing my bone marrow to work. Now I am no longer getting the shots so it's just a waiting game for my marrow to start working on it's own.

    Friggin scheduling nurse messed up and didn't call my cell number which she even asked for when I left. Tried to make it my fault that she left the message on my home machine when I am not staying at home. Said she spent all kinds of time making phone calls and arrangements to get the transfusions and scheduled with radiology to get my port out. I am SOOOO ticked off.

    Just a little more time
    Hi Beth,

    First, you look wonderful...

    Now that you are in the waiting stage, I'm sure your frustration must be building. Hopefully this weekend your marrow will kick into gear and get you going. Just a little bit longer and you will be on your way home.

    So sorry that you are having problems with scheduling. How extremely annoying for you. I would be pissed, to say the least.. And to try and blame you, well I could say a few choice words, but won't risk getting blocked, but you know what I would say.

    Stay strong and keep smiling. I think of you every day.


    Peaceful healing,
    Lisha
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    dixiegirl said:

    Shots
    John, they were only coming up because of the neupogen shots forcing my bone marrow to work. Now I am no longer getting the shots so it's just a waiting game for my marrow to start working on it's own.

    Friggin scheduling nurse messed up and didn't call my cell number which she even asked for when I left. Tried to make it my fault that she left the message on my home machine when I am not staying at home. Said she spent all kinds of time making phone calls and arrangements to get the transfusions and scheduled with radiology to get my port out. I am SOOOO ticked off.

    Blood counts
    Beth,
    I know I always got the Neulasta shot after each treatment. It speeded up the cell production at first after each injection. Then it dropped down to a trickle. Each time was the same way. Finally after all 6 treatments it took over 3 months for it to pick up any speed on its own. I guess I was fortunate. Vinny on the other hand had all kinds of problems,even with the shots. His count stayed low, I think forever,but it finally started to come up on its own. I do not know where his level is today. Maybe he can let us know where it stands right now. I am sure yours will do the same in time. Don't you just love it when somebody trys to place the blame on to somebody else. The old "Pass the Buck"game!!! John(FNHL-1-4A-5/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    forme said:

    Just a little more time
    Hi Beth,

    First, you look wonderful...

    Now that you are in the waiting stage, I'm sure your frustration must be building. Hopefully this weekend your marrow will kick into gear and get you going. Just a little bit longer and you will be on your way home.

    So sorry that you are having problems with scheduling. How extremely annoying for you. I would be pissed, to say the least.. And to try and blame you, well I could say a few choice words, but won't risk getting blocked, but you know what I would say.

    Stay strong and keep smiling. I think of you every day.


    Peaceful healing,
    Lisha

    Choice Words
    Lisha,
    You know how I feel about choice words. I would use them like I have in the past. Then I would get an offended message as always and be blocked and it would be called a technical problem. You are wise not to use some of the choice words. Me now,Well....thats a different story,but I have been a good boy lately...LOL John
  • allmost60
    allmost60 Member Posts: 3,178
    COBRA666 said:

    Blood counts
    Beth,
    I know I always got the Neulasta shot after each treatment. It speeded up the cell production at first after each injection. Then it dropped down to a trickle. Each time was the same way. Finally after all 6 treatments it took over 3 months for it to pick up any speed on its own. I guess I was fortunate. Vinny on the other hand had all kinds of problems,even with the shots. His count stayed low, I think forever,but it finally started to come up on its own. I do not know where his level is today. Maybe he can let us know where it stands right now. I am sure yours will do the same in time. Don't you just love it when somebody trys to place the blame on to somebody else. The old "Pass the Buck"game!!! John(FNHL-1-4A-5/10)

    I'm not afraid to say it...
    Hi sweetie..
    It sucks..it blows..it's bull****..and that nim-wit twit of a receptionist needs a good chewing out. Wish I lived close enough to pay her a visit. With that being said and out of the way...(block me if you want CSN)... you dear lady just try to relax for the next 4 days and think positive thoughts that your counts will climb. Girl, your immune system has been hit by a Mac truck going 80 miles an hour and it's going to take time to recover. Your frustration is warranted and totally understandable, but remember stress breaks the immune system down. Take some deep breaths and if need be take one of your Xanax. Like everyone has said.."you've come soooo far"..and it WILL get better. Let US be pissed at that dumb *** receptionist for you..put it out of your mind. Hang in there and chill for the next 4 days. Love you...Sue
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    allmost60 said:

    I'm not afraid to say it...
    Hi sweetie..
    It sucks..it blows..it's bull****..and that nim-wit twit of a receptionist needs a good chewing out. Wish I lived close enough to pay her a visit. With that being said and out of the way...(block me if you want CSN)... you dear lady just try to relax for the next 4 days and think positive thoughts that your counts will climb. Girl, your immune system has been hit by a Mac truck going 80 miles an hour and it's going to take time to recover. Your frustration is warranted and totally understandable, but remember stress breaks the immune system down. Take some deep breaths and if need be take one of your Xanax. Like everyone has said.."you've come soooo far"..and it WILL get better. Let US be pissed at that dumb *** receptionist for you..put it out of your mind. Hang in there and chill for the next 4 days. Love you...Sue

    You crack me up
    Yeah, been out walking a couple of times today trying to walk off some steam. At least it's only in the 80's today and the mask isn't too bad although I will be happy for the day I get rid of it too!!

    They at least called and moved up my appointment monday by 2 hours which helps some I suppose.

    I love you too guys!
    Beth
  • JoanieP
    JoanieP Member Posts: 573
    dixiegirl said:

    You crack me up
    Yeah, been out walking a couple of times today trying to walk off some steam. At least it's only in the 80's today and the mask isn't too bad although I will be happy for the day I get rid of it too!!

    They at least called and moved up my appointment monday by 2 hours which helps some I suppose.

    I love you too guys!
    Beth

    Beth
    You have come so far in a short period of time. Rest and relax and you will be fine. You walked twice today. Girl are you planning on the Boston Marathon next week:) Love ya and take deep breaths and RELAX
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    allmost60 said:

    I'm not afraid to say it...
    Hi sweetie..
    It sucks..it blows..it's bull****..and that nim-wit twit of a receptionist needs a good chewing out. Wish I lived close enough to pay her a visit. With that being said and out of the way...(block me if you want CSN)... you dear lady just try to relax for the next 4 days and think positive thoughts that your counts will climb. Girl, your immune system has been hit by a Mac truck going 80 miles an hour and it's going to take time to recover. Your frustration is warranted and totally understandable, but remember stress breaks the immune system down. Take some deep breaths and if need be take one of your Xanax. Like everyone has said.."you've come soooo far"..and it WILL get better. Let US be pissed at that dumb *** receptionist for you..put it out of your mind. Hang in there and chill for the next 4 days. Love you...Sue

    Whew-Wee
    Well damn Sue... I must say there goes that imagine I had of Rosary beads wrapped around your waist. LOL..John
  • vinny59
    vinny59 Member Posts: 1,032
    COBRA666 said:

    Whew-Wee
    Well damn Sue... I must say there goes that imagine I had of Rosary beads wrapped around your waist. LOL..John

    hahahahaha
    John you are funny!!!!!! Beth keep up the fight! It will all be worth it in the end....
  • tom29mi
    tom29mi Member Posts: 31 Member
    vinny59 said:

    hahahahaha
    John you are funny!!!!!! Beth keep up the fight! It will all be worth it in the end....

    my experience
    I went through the same thing with the numbers being up and down but they should be going open for you anytime.I had to get blood transfusions twice because my counts were that low but I went home two weeks after.Just hang in there it'll be over before you know it.I'm nearly 5 months out after my transplant and so far everything looks good.