ball is rolling

VivianLee5689
VivianLee5689 Member Posts: 546
in Head and Neck Cancer #1
Things are moving so quickly now. Last night David ran a 101.1 fever and we had a lot of activity in the room. Blood cultures, urine samples, chest xray. Then this morning we woke up to you need another blood transfusion. He is having that now. At 1 he has the bone marrow biopsy and starts the seven chemo drug regimen tonight. You can feel the tension in the air. I asked our doctor, who is well respected in the field, how many people has he treated with plasma cell leukemia. He said 7 but 4 were secondary plasma cell leukemias. He said there is no standard protocol and a third of the patients don't make it past the chemo. He said if no results in two rounds there won't be any. He said on the plus side two of his patients lived 2 years. All of this is little comfort to me right now.

Comments

  • Greend
    Greend Member Posts: 678
    #2
    Must be tough
    I know this is hard on you and my thoughts and prayers are with you and your family.
  • cureitall66
    cureitall66 Member Posts: 913
    #3
    One step at a time...
    Keep yourself together. I know it's overwhelming right now, just keep taking deep breaths and know that they are doing everything they can.

    Peace be with you...

    Cris
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    be strong
    Vivian,

    Do you need something? Can I do anything for you? After following yours and David’s story I can see you are both being pushed pretty hard. This cancer we all fight is terrible stuff. I do truly hope David response to treatments in a positive way and hope returns to your life. Where ever you draw your strength, please draw a little more and hang in there.

    Best always,

    Matt
  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #5
    Prayers for you both
    I have read your journey and am so sorry to hear of all the different things your husband and you have been thru. Please know that you and your husband are in my thoughts and prayers as you go thru this journey.

    Sharon
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #6
    Hold On
    I'm following you and David at every step. I'm praying for David. I know it is almost impossible, but try to take care of yourself. At the very least, try to eat healthy. And try to allow David as much "freedom" as possible. Even the smallest choices count.

    Aren't hospital routines something to behold. Just as the patient starts to relax, another group of caregivers show up. Although there is nothing to do, nothing to divert one's attention, there is also no time to rest. Who decided that the day should start at 5 AM anyway?

    See, I'm ranting for you. Rick.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
    Vivian....
    my heart is hurting for you, so much. Primary Plasma Leukemia is a very grave disease, and you are on a tough road. I'm praying so hard that David responds to the chemos and you two can have some quality time together. Since I cannot wrap you in my arms to bring at least a little comfort to you, just know that I'm keeping you and David tucked deep in my pocket...the fact that two of this Dr.'s patients made it for 2 years says a lot about his skill and dedication to his patients...

    If you can find a quiet spot (hospital chapels are normally nice and quiet), I'm hoping you can possibly find peace in meditation...close your mind to the panic and fear...and ask for strength for yourself and David.

    p
  • luvofmylif
    luvofmylif Member Posts: 344
    #8
    phrannie51 said:

    Vivian....
    my heart is hurting for you, so much. Primary Plasma Leukemia is a very grave disease, and you are on a tough road. I'm praying so hard that David responds to the chemos and you two can have some quality time together. Since I cannot wrap you in my arms to bring at least a little comfort to you, just know that I'm keeping you and David tucked deep in my pocket...the fact that two of this Dr.'s patients made it for 2 years says a lot about his skill and dedication to his patients...

    If you can find a quiet spot (hospital chapels are normally nice and quiet), I'm hoping you can possibly find peace in meditation...close your mind to the panic and fear...and ask for strength for yourself and David.

    p

    Wish I could say something
    Wish I could say something to help you. I know your heart is broken as is Davids. I can only imagine your pain. I know you do, but just try to spend every moment you can with your husband. Also, in addition to this site make sure you access any resources that are available in the hospital to help with coping with this. We are here for you but sometimes it helps to have someone who can hold your hand and listen to your fears and sadness.

    Please know we all care and wish you peace .

    Joan
  • Billie67
    Billie67 Member Posts: 898
    #9
    luvofmylif said:

    Wish I could say something
    Wish I could say something to help you. I know your heart is broken as is Davids. I can only imagine your pain. I know you do, but just try to spend every moment you can with your husband. Also, in addition to this site make sure you access any resources that are available in the hospital to help with coping with this. We are here for you but sometimes it helps to have someone who can hold your hand and listen to your fears and sadness.

    Please know we all care and wish you peace .

    Joan

    Vivian
    I truly wish I could be there with you to help give you some sort of comfort. I'm so very sad for you right now. I pray that David responds well to treatment and you two can have some quality time together. There are advances all the time and I will not give up hope that David will benefit from some of them. Please stay with us and know we all support you and offer you our prayers, love and compassion.
    Billie
  • TheOtherDitto
    TheOtherDitto Member Posts: 58
    #10
    Billie67 said:

    Vivian
    I truly wish I could be there with you to help give you some sort of comfort. I'm so very sad for you right now. I pray that David responds well to treatment and you two can have some quality time together. There are advances all the time and I will not give up hope that David will benefit from some of them. Please stay with us and know we all support you and offer you our prayers, love and compassion.
    Billie

    Vivian and David
    Praying that David has improvement with the transfusion and chemo regime. Keep the faith and lean on us for support. I, like others have stated, wish we could be with you to hold your hand and give you a shoulder to lean on. Know that we are here right along with you. It's extremely difficult being the caregiver to the one you love the most and not being able to take any of their pain or suffering away. I'm praying and asking for strength for you as well as remission for David.
    Diane Ditto

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