End of the Road
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End of the Road

› Forums › General Melanoma Community › End of the Road

  • Post
    • February 23, 2012 at 4:17 am
    Jan in OC
    Participant

    Hey everyone, 

    Hey everyone, 

    Haven't been on in awhile.  Dirk and I have been fighting hard to get his brain mets under control.  After 3 rounds of Abraxene, the January scans showed that 6 brain tumors started growing.  Tough news, because in December, it looked like they were all stable.  He has already done WBR, so we were scheduled for Gamma Knife on 2/10.  Since then, he has not bounced back.  For the last week he has been sleeping a lot, very little appetite, some confusion, difficulty speaking, etc.  I contacted MD Anderson and Dr Papa saw him today.  I knew before we got there, that he was not good, his skin and the whites of his eyes were yellow.  But I was hoping they could admit him and hydrate or give blood transfusion……anything….

    Sadly, after getting exam and blood results, Papa said his liver is failing.  No more treatments.  We have tried all that we can.  The social worker brought in a batch of brochures for hospice care and i need to call her in the morning with our choice.  Doc said we could have a day, a week, possibly a month (highly unlikely though).  

    Just trying to wrap my brain (and heart) around this.  Not sure how to deal with this next part, but as always, one day at a time.

    Thanks everyone for listening.

    Jan

Viewing 59 reply threads
  • Replies
      • February 23, 2012 at 5:22 am
      hope4cure1
      Participant

      Oh Jan, I am so sorry to hear what Dirk and you are going through.  You both have been determined fighters.  I hope that you receive love and support as you make your decisions and hold each other close.  My prayers are with you every step of the way.

      Hope

      • February 23, 2012 at 5:22 am
      hope4cure1
      Participant

      Oh Jan, I am so sorry to hear what Dirk and you are going through.  You both have been determined fighters.  I hope that you receive love and support as you make your decisions and hold each other close.  My prayers are with you every step of the way.

      Hope

      • February 23, 2012 at 5:22 am
      hope4cure1
      Participant

      Oh Jan, I am so sorry to hear what Dirk and you are going through.  You both have been determined fighters.  I hope that you receive love and support as you make your decisions and hold each other close.  My prayers are with you every step of the way.

      Hope

      • February 23, 2012 at 10:04 am
      aldakota22
      Participant

      So sorry for you and your husband.Both are real fighters.One day soon medicine will beat this.My prayers go with you.

      • February 23, 2012 at 10:04 am
      aldakota22
      Participant

      So sorry for you and your husband.Both are real fighters.One day soon medicine will beat this.My prayers go with you.

      • February 23, 2012 at 10:04 am
      aldakota22
      Participant

      So sorry for you and your husband.Both are real fighters.One day soon medicine will beat this.My prayers go with you.

      • February 23, 2012 at 12:13 pm
      MeNDave
      Participant

      Jan,

      I'm so sorry your journey has come to this.  My heart is breaking for you.  You both are so strong, and Dirk has been lucky to have you in his corner fighting this every step of the way.  I wish there were words to bring you comfort….please know I'm thinking of you.

      Maria

      • February 23, 2012 at 12:13 pm
      MeNDave
      Participant

      Jan,

      I'm so sorry your journey has come to this.  My heart is breaking for you.  You both are so strong, and Dirk has been lucky to have you in his corner fighting this every step of the way.  I wish there were words to bring you comfort….please know I'm thinking of you.

      Maria

      • February 23, 2012 at 12:13 pm
      MeNDave
      Participant

      Jan,

      I'm so sorry your journey has come to this.  My heart is breaking for you.  You both are so strong, and Dirk has been lucky to have you in his corner fighting this every step of the way.  I wish there were words to bring you comfort….please know I'm thinking of you.

      Maria

      • February 23, 2012 at 12:58 pm
      scots
      Participant

      I'm sad to hear the news about Dirk. You and Dirk will be in my prayers.

      scot

      • February 23, 2012 at 12:58 pm
      scots
      Participant

      I'm sad to hear the news about Dirk. You and Dirk will be in my prayers.

      scot

      • February 23, 2012 at 12:58 pm
      scots
      Participant

      I'm sad to hear the news about Dirk. You and Dirk will be in my prayers.

      scot

      • February 23, 2012 at 1:43 pm
      SStamps
      Participant
      I am sorry to hear the news my thoughts and prayers are with you and your family. I have been thinking about you and your husband since your last post( or the last one I read) Mickey and I are in Houston now for one more night if you need anything let me know.
      Samantha
      • February 23, 2012 at 1:43 pm
      SStamps
      Participant
      I am sorry to hear the news my thoughts and prayers are with you and your family. I have been thinking about you and your husband since your last post( or the last one I read) Mickey and I are in Houston now for one more night if you need anything let me know.
      Samantha
      • February 23, 2012 at 1:43 pm
      SStamps
      Participant
      I am sorry to hear the news my thoughts and prayers are with you and your family. I have been thinking about you and your husband since your last post( or the last one I read) Mickey and I are in Houston now for one more night if you need anything let me know.
      Samantha
      • February 23, 2012 at 1:46 pm
      Fen
      Participant

      I'm so sorry, Jan.  I hope hospice provides all the support you both need – keeping you in my prayers.  Fen.

      • February 23, 2012 at 1:46 pm
      Fen
      Participant

      I'm so sorry, Jan.  I hope hospice provides all the support you both need – keeping you in my prayers.  Fen.

      • February 23, 2012 at 1:46 pm
      Fen
      Participant

      I'm so sorry, Jan.  I hope hospice provides all the support you both need – keeping you in my prayers.  Fen.

      • February 23, 2012 at 1:52 pm
      Phil S
      Participant
      Jan, You are such an amazing and loving advocate for your husband. Please know you are in our thoughts and we wish Dirk a peaceful end to his battle with melanoma. What a fight you two put up, please take good care yourself! God bless, Valerie (Phil’s wife)
      • February 23, 2012 at 1:52 pm
      Phil S
      Participant
      Jan, You are such an amazing and loving advocate for your husband. Please know you are in our thoughts and we wish Dirk a peaceful end to his battle with melanoma. What a fight you two put up, please take good care yourself! God bless, Valerie (Phil’s wife)
      • February 23, 2012 at 1:52 pm
      Phil S
      Participant
      Jan, You are such an amazing and loving advocate for your husband. Please know you are in our thoughts and we wish Dirk a peaceful end to his battle with melanoma. What a fight you two put up, please take good care yourself! God bless, Valerie (Phil’s wife)
      • February 23, 2012 at 2:04 pm
      Gene_S
      Participant

      Hello Jan,

      I am so sorry to hear the sad news.  You have both put up a good fight and been true warriors.  My thoughts and prayers go out to you and the family.  Please take good care of yourself and Dirk.  Cyber hugs to help you deal with all that needs done.

      Judy and Gene

      • February 23, 2012 at 2:04 pm
      Gene_S
      Participant

      Hello Jan,

      I am so sorry to hear the sad news.  You have both put up a good fight and been true warriors.  My thoughts and prayers go out to you and the family.  Please take good care of yourself and Dirk.  Cyber hugs to help you deal with all that needs done.

      Judy and Gene

      • February 23, 2012 at 2:04 pm
      Gene_S
      Participant

      Hello Jan,

      I am so sorry to hear the sad news.  You have both put up a good fight and been true warriors.  My thoughts and prayers go out to you and the family.  Please take good care of yourself and Dirk.  Cyber hugs to help you deal with all that needs done.

      Judy and Gene

      • February 23, 2012 at 2:42 pm
      walesgirl
      Participant

      Jan…as with the others, my heart goes out to you both, and your daughter…I wish you all serenity and will keep you in my thoughts and prayers…

      • February 23, 2012 at 2:42 pm
      walesgirl
      Participant

      Jan…as with the others, my heart goes out to you both, and your daughter…I wish you all serenity and will keep you in my thoughts and prayers…

      • February 23, 2012 at 2:42 pm
      walesgirl
      Participant

      Jan…as with the others, my heart goes out to you both, and your daughter…I wish you all serenity and will keep you in my thoughts and prayers…

      • February 23, 2012 at 2:42 pm
      lhaley
      Participant

      Jan,

      You and Dirk have fought so hard through this disease.  I know that you will find the best hospice program that you can now find that will help your family through this. 

      Love each other during this time and be peaceful for this last part of the journey. With having just moved to Texas I hope that there are either friends or family to help you.

      Linda

      • February 23, 2012 at 2:42 pm
      lhaley
      Participant

      Jan,

      You and Dirk have fought so hard through this disease.  I know that you will find the best hospice program that you can now find that will help your family through this. 

      Love each other during this time and be peaceful for this last part of the journey. With having just moved to Texas I hope that there are either friends or family to help you.

      Linda

      • February 23, 2012 at 2:42 pm
      lhaley
      Participant

      Jan,

      You and Dirk have fought so hard through this disease.  I know that you will find the best hospice program that you can now find that will help your family through this. 

      Love each other during this time and be peaceful for this last part of the journey. With having just moved to Texas I hope that there are either friends or family to help you.

      Linda

      • February 23, 2012 at 3:16 pm
      samcanada
      Participant

      I am so sorry that you and your family are going through this. Our hearts and prayers to you and your family.

      • February 23, 2012 at 3:16 pm
      samcanada
      Participant

      I am so sorry that you and your family are going through this. Our hearts and prayers to you and your family.

      • February 23, 2012 at 3:16 pm
      samcanada
      Participant

      I am so sorry that you and your family are going through this. Our hearts and prayers to you and your family.

      • February 23, 2012 at 4:19 pm
      jim Breitfeller
      Participant

      Jan,

      My heart goes out to you, Dirk and family.

      You are in my thoughts and prayers

       

      Jimmy B

      • February 23, 2012 at 4:19 pm
      jim Breitfeller
      Participant

      Jan,

      My heart goes out to you, Dirk and family.

      You are in my thoughts and prayers

       

      Jimmy B

      • February 23, 2012 at 4:19 pm
      jim Breitfeller
      Participant

      Jan,

      My heart goes out to you, Dirk and family.

      You are in my thoughts and prayers

       

      Jimmy B

      • February 23, 2012 at 4:36 pm
      runnergirl
      Participant

      Jan, you and Dirk have done the best you can do.  Making one last visit to MD Anderson honored the integrety that has been your path.  Now you are on a different path, one that will end at the Y.  Been there, done that.  Will offer some humble suggestions.  Two kleenex doubled over works better than one.  Honor your physical limits.  If hospice leaves you without enough aids, hire help.  If somebody tries to pull you away by saying "You have to take care of yourself," say "sitting here with him IS taking care of myself."  Same for eating.  Follow what your body wants, but do stay hydrated. If you don't feel like talking on the phone, drop e-bombs.  Call the people who offer you comfort, not questions.  Will somebody copy this and send it back to me when I need it again? Jan, the peace of God may be beyond understanding, but Im hoping that you will find grace and courage on your journey; may God give life to you and everlasting life to Dirk.

      • February 23, 2012 at 4:36 pm
      runnergirl
      Participant

      Jan, you and Dirk have done the best you can do.  Making one last visit to MD Anderson honored the integrety that has been your path.  Now you are on a different path, one that will end at the Y.  Been there, done that.  Will offer some humble suggestions.  Two kleenex doubled over works better than one.  Honor your physical limits.  If hospice leaves you without enough aids, hire help.  If somebody tries to pull you away by saying "You have to take care of yourself," say "sitting here with him IS taking care of myself."  Same for eating.  Follow what your body wants, but do stay hydrated. If you don't feel like talking on the phone, drop e-bombs.  Call the people who offer you comfort, not questions.  Will somebody copy this and send it back to me when I need it again? Jan, the peace of God may be beyond understanding, but Im hoping that you will find grace and courage on your journey; may God give life to you and everlasting life to Dirk.

      • February 23, 2012 at 4:36 pm
      runnergirl
      Participant

      Jan, you and Dirk have done the best you can do.  Making one last visit to MD Anderson honored the integrety that has been your path.  Now you are on a different path, one that will end at the Y.  Been there, done that.  Will offer some humble suggestions.  Two kleenex doubled over works better than one.  Honor your physical limits.  If hospice leaves you without enough aids, hire help.  If somebody tries to pull you away by saying "You have to take care of yourself," say "sitting here with him IS taking care of myself."  Same for eating.  Follow what your body wants, but do stay hydrated. If you don't feel like talking on the phone, drop e-bombs.  Call the people who offer you comfort, not questions.  Will somebody copy this and send it back to me when I need it again? Jan, the peace of God may be beyond understanding, but Im hoping that you will find grace and courage on your journey; may God give life to you and everlasting life to Dirk.

      • February 23, 2012 at 5:20 pm
      Karin L
      Participant

      My heart breaks just reading this.  You were both an inspiration to me when I began my battle to keep fighting and I thank you for that.  My prayers and thoughts are with you both. 

      Karin

      • February 23, 2012 at 5:20 pm
      Karin L
      Participant

      My heart breaks just reading this.  You were both an inspiration to me when I began my battle to keep fighting and I thank you for that.  My prayers and thoughts are with you both. 

      Karin

      • February 23, 2012 at 5:20 pm
      Karin L
      Participant

      My heart breaks just reading this.  You were both an inspiration to me when I began my battle to keep fighting and I thank you for that.  My prayers and thoughts are with you both. 

      Karin

      • February 23, 2012 at 5:33 pm
      gabsound
      Participant
      Jan,

      I know I don’t “know ” you, but i was just thinking about you and had looked up your last post last evening. I’m sorry things have taken the turn that they have. That’s just heartbreaking. I’m sure hospice will be very helpful.

      God bless you and Dirk

      Julie in Las Vegas

      • February 23, 2012 at 5:33 pm
      gabsound
      Participant
      Jan,

      I know I don’t “know ” you, but i was just thinking about you and had looked up your last post last evening. I’m sorry things have taken the turn that they have. That’s just heartbreaking. I’m sure hospice will be very helpful.

      God bless you and Dirk

      Julie in Las Vegas

      • February 23, 2012 at 5:33 pm
      gabsound
      Participant
      Jan,

      I know I don’t “know ” you, but i was just thinking about you and had looked up your last post last evening. I’m sorry things have taken the turn that they have. That’s just heartbreaking. I’m sure hospice will be very helpful.

      God bless you and Dirk

      Julie in Las Vegas

      • February 23, 2012 at 7:34 pm
      RMcLegal
      Participant

      I'm so very sorry to hear this.  You two are inspiring fighters.  Peace be with you.

      • February 23, 2012 at 7:34 pm
      RMcLegal
      Participant

      I'm so very sorry to hear this.  You two are inspiring fighters.  Peace be with you.

      • February 23, 2012 at 7:34 pm
      RMcLegal
      Participant

      I'm so very sorry to hear this.  You two are inspiring fighters.  Peace be with you.

      • February 23, 2012 at 8:48 pm
      Sherron
      Participant

      Jan, I am so sorry to hear this…I know it does come as a shock.  I lost my husband on Nov 30, 2010…..and still dealling with it, and reliving it all.  It will be very difficult.  I pray you have a great faith in God…That is what has sustained me, not people, but my relationshlip with my God.  He has held my had the complete way.  Of course, my heart is very open to him.   I wish you the very best.  Jim went to Hospice at the VA…I  thought he had like 3 weeks.  He was gone withing 12 hours…Such a shock…  Prayer and Hugs.  And so sorry you have to walk this journey.  But soon his pain will be gone, and in the end your hursband will be the winner….Mel loses everytime.

       

      Take Care,

       

      Sherron, wife to Jim FOREVER

      • February 23, 2012 at 8:48 pm
      Sherron
      Participant

      Jan, I am so sorry to hear this…I know it does come as a shock.  I lost my husband on Nov 30, 2010…..and still dealling with it, and reliving it all.  It will be very difficult.  I pray you have a great faith in God…That is what has sustained me, not people, but my relationshlip with my God.  He has held my had the complete way.  Of course, my heart is very open to him.   I wish you the very best.  Jim went to Hospice at the VA…I  thought he had like 3 weeks.  He was gone withing 12 hours…Such a shock…  Prayer and Hugs.  And so sorry you have to walk this journey.  But soon his pain will be gone, and in the end your hursband will be the winner….Mel loses everytime.

       

      Take Care,

       

      Sherron, wife to Jim FOREVER

        • February 24, 2012 at 12:22 am
        boot2aboot
        Participant

        Thank you for updating us…i am so sorry to hear of this news…but you have been a trooper

        boots

        • February 24, 2012 at 12:22 am
        boot2aboot
        Participant

        Thank you for updating us…i am so sorry to hear of this news…but you have been a trooper

        boots

        • February 24, 2012 at 12:22 am
        boot2aboot
        Participant

        Thank you for updating us…i am so sorry to hear of this news…but you have been a trooper

        boots

      • February 23, 2012 at 8:48 pm
      Sherron
      Participant

      Jan, I am so sorry to hear this…I know it does come as a shock.  I lost my husband on Nov 30, 2010…..and still dealling with it, and reliving it all.  It will be very difficult.  I pray you have a great faith in God…That is what has sustained me, not people, but my relationshlip with my God.  He has held my had the complete way.  Of course, my heart is very open to him.   I wish you the very best.  Jim went to Hospice at the VA…I  thought he had like 3 weeks.  He was gone withing 12 hours…Such a shock…  Prayer and Hugs.  And so sorry you have to walk this journey.  But soon his pain will be gone, and in the end your hursband will be the winner….Mel loses everytime.

       

      Take Care,

       

      Sherron, wife to Jim FOREVER

      • February 24, 2012 at 3:31 am
      jag
      Participant

      Jan, 

      Very sorry to hear that you and Dirk are heading in that direction.  I will pray for your strength in this difficult time.

      • February 24, 2012 at 3:31 am
      jag
      Participant

      Jan, 

      Very sorry to hear that you and Dirk are heading in that direction.  I will pray for your strength in this difficult time.

        • February 24, 2012 at 11:04 am
        Vermont_Donna
        Participant

        Dear Jan (and Dirk),

          I am so very sorry for you and it hurts to read your post, but I am so glad that you took the time to come to your melanoma family and let us know what is going on.

         I wish you a peaceful journey forward Dirk.

        Hugs,

        Vermont_Donna

        • February 24, 2012 at 11:04 am
        Vermont_Donna
        Participant

        Dear Jan (and Dirk),

          I am so very sorry for you and it hurts to read your post, but I am so glad that you took the time to come to your melanoma family and let us know what is going on.

         I wish you a peaceful journey forward Dirk.

        Hugs,

        Vermont_Donna

        • February 24, 2012 at 11:04 am
        Vermont_Donna
        Participant

        Dear Jan (and Dirk),

          I am so very sorry for you and it hurts to read your post, but I am so glad that you took the time to come to your melanoma family and let us know what is going on.

         I wish you a peaceful journey forward Dirk.

        Hugs,

        Vermont_Donna

      • February 24, 2012 at 3:31 am
      jag
      Participant

      Jan, 

      Very sorry to hear that you and Dirk are heading in that direction.  I will pray for your strength in this difficult time.

      • February 24, 2012 at 1:06 pm
      davidfromsingapore
      Participant

      Dirk and Jan

      You already won the game.  The rest is a bonus.  Thinking and praying for you both. 

       

      David

      • February 24, 2012 at 1:06 pm
      davidfromsingapore
      Participant

      Dirk and Jan

      You already won the game.  The rest is a bonus.  Thinking and praying for you both. 

       

      David

        • February 24, 2012 at 6:42 pm
        NYKaren
        Participant
        Dear Jan and Dirk,

        I’m so very sorry to hear your news. My thoughts and prayers are with you both.

        karen

        • February 24, 2012 at 6:42 pm
        NYKaren
        Participant
        Dear Jan and Dirk,

        I’m so very sorry to hear your news. My thoughts and prayers are with you both.

        karen

        • February 24, 2012 at 6:42 pm
        NYKaren
        Participant
        Dear Jan and Dirk,

        I’m so very sorry to hear your news. My thoughts and prayers are with you both.

        karen

      • February 24, 2012 at 1:06 pm
      davidfromsingapore
      Participant

      Dirk and Jan

      You already won the game.  The rest is a bonus.  Thinking and praying for you both. 

       

      David

      • February 26, 2012 at 1:07 am
      FormerCaregiver
      Participant

      Jan, I am truly saddened to read this. Sometimes things happen that are out of our control and despite everyone's best efforts, there are no more treatments available. I remember being in a very similar situation in 2009 when my late wife was experiencing liver failure.

      You and Dirk are in my thoughts and prayers.

      Take care

      Frank from Australia

      • February 26, 2012 at 1:07 am
      FormerCaregiver
      Participant

      Jan, I am truly saddened to read this. Sometimes things happen that are out of our control and despite everyone's best efforts, there are no more treatments available. I remember being in a very similar situation in 2009 when my late wife was experiencing liver failure.

      You and Dirk are in my thoughts and prayers.

      Take care

      Frank from Australia

      • February 26, 2012 at 1:07 am
      FormerCaregiver
      Participant

      Jan, I am truly saddened to read this. Sometimes things happen that are out of our control and despite everyone's best efforts, there are no more treatments available. I remember being in a very similar situation in 2009 when my late wife was experiencing liver failure.

      You and Dirk are in my thoughts and prayers.

      Take care

      Frank from Australia

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