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karenbeth
karenbeth CSN Member Posts: 194
in Lung Cancer #1
I had to have my husband admitted to the hospital yesterday. As usual he is confounding the docs--his CT scan shows much improvement of the brain lesions, but his behavior indicates otherwise. He is lethargic, confused, disoriented, hearing things that arent there, etc. He had to be sedated last night. They did an MRI this morning. I am heading back to the hospital to get results. They will probably do a lumbar puncture as well to look at his cranio-spinal fluid.

I'm afraid this is the beginning of the end. If his cancer has advanced he won't do any more treatment. But I am a glass half empty kind of person, and maybe I'll be happily relieved. Please send thoughts and good wishes our way.

Karen
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Comments

  • medi_2
    medi_2 CSN Member Posts: 505 Member
    #2
    Will do...
    Consider them sent...
    Cheers (to a half full glass)
    Medi
  • Glenna M
    Glenna M CSN Member Posts: 1,576
    #3
    Karen
    Sending positive thoughts and wishes for you and your husband. Praying that you will find your glass half full.

    Stay strong,
    Glenna
  • angelyn
    angelyn CSN Member Posts: 51
    #4
    Glenna M said:

    Karen
    Sending positive thoughts and wishes for you and your husband. Praying that you will find your glass half full.

    Stay strong,
    Glenna

    Karen
    Sending good thoughts your way. Praying for you and your husband. My god bless you both.
    Angie
  • hope0310
    hope0310 CSN Member Posts: 320
    #5
    You and your husband are in
    You and your husband are in my thoughts Karen.

    Please keep us posted on the lumbar puncture.

    Elysia
  • karenbeth
    karenbeth CSN Member Posts: 194
    #6
    hope0310 said:

    You and your husband are in
    You and your husband are in my thoughts Karen.

    Please keep us posted on the lumbar puncture.

    Elysia

    UPDATE
    Unfortunately, the bad news kept on coming yesterday. He didn't have to have the lumbar puncture b/c the MRI showed the cancer had spread aggressively throughout his brain--and these were new, large lesions that weren't there on the MRI he had about a month ago. There is nothing else they can do. They give him only weeks--maybe a month. I took him home last night and set up home hospice. Unbelievable to think he went to work 2 days ago and now he is soiling himself and needs help getting dressed.

    He is also hallucinating and we had a few scary moments yesterday evening. He thought he was being attacked by an intruder and was trying to escape--I had to wrestle him to the ground until he calmed down. I am trying to get a crisis care aide for the weekend before the regular home health aide and other hospice stuff kicks in on Monday. Otherwise we will muddle through on our own. I have Haldol to give him when needed. He is calm and sleeping now.

    I will find the inner resources, like you all have, to deal with it. I broke down last night and probably will again, but right now I am relieved that we have a plan and supports in place.

    Thank you for your wishes--we still need them, for a painless and peaceful journey.

    Karen
  • Kimmiann
    Kimmiann Member Posts: 46
    #7
    karenbeth said:

    UPDATE
    Unfortunately, the bad news kept on coming yesterday. He didn't have to have the lumbar puncture b/c the MRI showed the cancer had spread aggressively throughout his brain--and these were new, large lesions that weren't there on the MRI he had about a month ago. There is nothing else they can do. They give him only weeks--maybe a month. I took him home last night and set up home hospice. Unbelievable to think he went to work 2 days ago and now he is soiling himself and needs help getting dressed.

    He is also hallucinating and we had a few scary moments yesterday evening. He thought he was being attacked by an intruder and was trying to escape--I had to wrestle him to the ground until he calmed down. I am trying to get a crisis care aide for the weekend before the regular home health aide and other hospice stuff kicks in on Monday. Otherwise we will muddle through on our own. I have Haldol to give him when needed. He is calm and sleeping now.

    I will find the inner resources, like you all have, to deal with it. I broke down last night and probably will again, but right now I am relieved that we have a plan and supports in place.

    Thank you for your wishes--we still need them, for a painless and peaceful journey.

    Karen

    prayers
    Karen,

    My thoughts and prayers are with you.

    Kim
  • catcon49
    catcon49 CSN Member Posts: 398
    #8
    Kimmiann said:

    prayers
    Karen,

    My thoughts and prayers are with you.

    Kim

    Prayers
    Sending all the good thoughts and prayers your way. God Bless.
  • angelyn
    angelyn CSN Member Posts: 51
    #9
    catcon49 said:

    Prayers
    Sending all the good thoughts and prayers your way. God Bless.

    Praying for you
    Thinking and praying for both of you.
  • beatlemike
    beatlemike Member Posts: 55 Member
    #10
    angelyn said:

    Praying for you
    Thinking and praying for both of you.

    For you
    Thoughts and prayer for you and your family at this difficult time.
  • NayPaul
    NayPaul CSN Member Posts: 230 Member
    #11
    karenbeth said:

    UPDATE
    Unfortunately, the bad news kept on coming yesterday. He didn't have to have the lumbar puncture b/c the MRI showed the cancer had spread aggressively throughout his brain--and these were new, large lesions that weren't there on the MRI he had about a month ago. There is nothing else they can do. They give him only weeks--maybe a month. I took him home last night and set up home hospice. Unbelievable to think he went to work 2 days ago and now he is soiling himself and needs help getting dressed.

    He is also hallucinating and we had a few scary moments yesterday evening. He thought he was being attacked by an intruder and was trying to escape--I had to wrestle him to the ground until he calmed down. I am trying to get a crisis care aide for the weekend before the regular home health aide and other hospice stuff kicks in on Monday. Otherwise we will muddle through on our own. I have Haldol to give him when needed. He is calm and sleeping now.

    I will find the inner resources, like you all have, to deal with it. I broke down last night and probably will again, but right now I am relieved that we have a plan and supports in place.

    Thank you for your wishes--we still need them, for a painless and peaceful journey.

    Karen

    peacful and painless
    Definitely sending thoughts that things r painlee and peaceful.

    Like u said, it is overwelming to have someone working a few days ago lose so much capacity. I guess in some ways it is also the blessing...to be as good as possible for as long as possible. Does not make this moment easier...but it made past moments easier.

    Thinking of u today.
  • hope0310
    hope0310 CSN Member Posts: 320
    #12
    NayPaul said:

    peacful and painless
    Definitely sending thoughts that things r painlee and peaceful.

    Like u said, it is overwelming to have someone working a few days ago lose so much capacity. I guess in some ways it is also the blessing...to be as good as possible for as long as possible. Does not make this moment easier...but it made past moments easier.

    Thinking of u today.

    Oh Karen....
    My heart is heavy for you. Your post gave me chills, we were in that same exact spot beginning August 6th.

    "There is nothing else we can do".......hated when they said that!! I was like WTH?? Yes you can, we are, come on!!!

    Then I realized that it was the sad truth. They told us 4-6 weeks, mom pushed it to 7.
    Hospice was so amazing.

    Is he taking steriod for the brain tumors?


    I hope that you will find the peace you need. I was so thankful to have those last 7 weeks. We all quit work and were just there. Talking about stuff, a lot of nonsense that came out of moms mouth....we just rolled with it. It was sort of full circle, I felt honored to be there for her, to help bath her, change her, do her nails, lay up in the hospital bed with her and talk..or not, just lay there.


    ...sigh........

    Be good to yourself. We are all here for you..

    Elysia
  • Glenna M
    Glenna M CSN Member Posts: 1,576
    #13
    hope0310 said:

    Oh Karen....
    My heart is heavy for you. Your post gave me chills, we were in that same exact spot beginning August 6th.

    "There is nothing else we can do".......hated when they said that!! I was like WTH?? Yes you can, we are, come on!!!

    Then I realized that it was the sad truth. They told us 4-6 weeks, mom pushed it to 7.
    Hospice was so amazing.

    Is he taking steriod for the brain tumors?


    I hope that you will find the peace you need. I was so thankful to have those last 7 weeks. We all quit work and were just there. Talking about stuff, a lot of nonsense that came out of moms mouth....we just rolled with it. It was sort of full circle, I felt honored to be there for her, to help bath her, change her, do her nails, lay up in the hospital bed with her and talk..or not, just lay there.


    ...sigh........

    Be good to yourself. We are all here for you..

    Elysia

    Karen
    My heart broke while I was reading this, I have been praying that things would take a turn for the better.

    You and your family will continue to be in my prayers.

    Glenna
  • sissylu1
    sissylu1 Member Posts: 66 Member
    #14
    prayers
    Even though we have never met I am so sorry to hear of this latest news for you and your husband, you have been given some good advice here on this site and I would only add that I was blessed to be with both my parents (30 years apart) at both of thier death beds, as hard as that is you will feel so lucky you were able to be with your husband when he passes over and witness the peace that will envelope him, that look and thier release is what has given me peace over these years....I pray that for both of you.
  • karenbeth
    karenbeth CSN Member Posts: 194
    #15
    hope0310 said:

    Oh Karen....
    My heart is heavy for you. Your post gave me chills, we were in that same exact spot beginning August 6th.

    "There is nothing else we can do".......hated when they said that!! I was like WTH?? Yes you can, we are, come on!!!

    Then I realized that it was the sad truth. They told us 4-6 weeks, mom pushed it to 7.
    Hospice was so amazing.

    Is he taking steriod for the brain tumors?


    I hope that you will find the peace you need. I was so thankful to have those last 7 weeks. We all quit work and were just there. Talking about stuff, a lot of nonsense that came out of moms mouth....we just rolled with it. It was sort of full circle, I felt honored to be there for her, to help bath her, change her, do her nails, lay up in the hospital bed with her and talk..or not, just lay there.


    ...sigh........

    Be good to yourself. We are all here for you..

    Elysia

    thank you
    thank you all for your prayers, it means so much to us.

    Elysia, they decided not to give him steroids at the hospital, they said it wouldn't help. But I have gotten advice to the contrary from the VNS nurses and others. I have a call into his oncologist, plan to speak with him tomorrow. The VNS nurse also put in a call both to him and the hospice doctor. If it will help in anyway, he should have it.
    Also, Elysia you said you felt honored to be there for her...that is how I feel too. If I can make him feel safe, happy and at peace it will be one of the best accomplishments of my life.

    Karen
  • JohnBinDC
    JohnBinDC Member Posts: 91 Member
    #16
    Karen
    My thoughts abd prayers also go out to you and your family. I wish you and your husband much peace and the best of wishes to you always.

    John
  • lekkerone
    lekkerone CSN Member Posts: 199 Member
    #17
    karenbeth said:

    thank you
    thank you all for your prayers, it means so much to us.

    Elysia, they decided not to give him steroids at the hospital, they said it wouldn't help. But I have gotten advice to the contrary from the VNS nurses and others. I have a call into his oncologist, plan to speak with him tomorrow. The VNS nurse also put in a call both to him and the hospice doctor. If it will help in anyway, he should have it.
    Also, Elysia you said you felt honored to be there for her...that is how I feel too. If I can make him feel safe, happy and at peace it will be one of the best accomplishments of my life.

    Karen

    Bless you Karen
    Your wonderful attitude amazes me. Good for you. I hope you both have peace as you spend time together.
  • helenmills
    helenmills Member Posts: 8
    #18
    positivity
    u will be in my thoughts and prayers - everything will work out for the best
  • helenmills
    helenmills Member Posts: 8
    #19
    positivity
    u will be in my thoughts and prayers - everything will work out for the best
  • jeani13
    jeani13 Member Posts: 9
    #20
    karenbeth said:

    UPDATE
    Unfortunately, the bad news kept on coming yesterday. He didn't have to have the lumbar puncture b/c the MRI showed the cancer had spread aggressively throughout his brain--and these were new, large lesions that weren't there on the MRI he had about a month ago. There is nothing else they can do. They give him only weeks--maybe a month. I took him home last night and set up home hospice. Unbelievable to think he went to work 2 days ago and now he is soiling himself and needs help getting dressed.

    He is also hallucinating and we had a few scary moments yesterday evening. He thought he was being attacked by an intruder and was trying to escape--I had to wrestle him to the ground until he calmed down. I am trying to get a crisis care aide for the weekend before the regular home health aide and other hospice stuff kicks in on Monday. Otherwise we will muddle through on our own. I have Haldol to give him when needed. He is calm and sleeping now.

    I will find the inner resources, like you all have, to deal with it. I broke down last night and probably will again, but right now I am relieved that we have a plan and supports in place.

    Thank you for your wishes--we still need them, for a painless and peaceful journey.

    Karen

    In the same place
    Karen

    My husband was diagnosed 2 years ago with stage IV lung, brain, and now cancer in his spinal fluid. So far in total the poor man had 25 WBR treatments, 30 on chest and 16 on back and 7 round of chemo. He is now on a medaport at home. The medaport manages his pain ( dilaudin). He can no longer support himself walking and has no control of bowels. I am going to the Doctors this morning to discuss hospice. God Bless you as I am also worried that my husband may start to have neurologic behavior changes,
  • hope0310
    hope0310 CSN Member Posts: 320
    #21
    helenmills said:

    positivity
    u will be in my thoughts and prayers - everything will work out for the best

    Yes ....
    Check with the onco....and your hospice nurse. True, the steriods will not change to outcome, but it will eliviate the swelling, which will help with the hallucinations. It is all about comfort and peace at this point.

    Be good to yourself, big hugs!!!
    Elysia

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