update on Paul

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MAE66
MAE66 Member Posts: 66
edited March 2014 in Esophageal Cancer #1
I think the last time I posted Paul was in the hospital with liver problems. It has been a rough ever since. He spent about a week in rehab to gain his strength beck from his ICU stay and was doing and feeling well. A UTI landed him back in the hospital where the liver started to fail again. He had a stint put in that keept the liver function up, but unfortunatly, that was only a temporay fix. Scans showed no mets in the liver, he has chemo induced liver failure. We got the "there is nothing more we can do" talk and brought him home for in home Hospice. We had a great weekend, than it became obvious that I would need alot more help. We had round the clock nursing, which is harder than I thought it would be to have nurses comming and going all the time, not to mention the expense. Yesterday we had him transfered to a residential Hospice which seems to be the best solution for us now.

Even though I have not posted in awhile, I have been checking the site often. I think of everyone here, and the struggles we all share. It is always a comfort to know that I am not alone in this.

Susan

Comments

  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #2
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    Susan,
    So sorry to hear
    Susan,
    So sorry to hear things are not going well...not words of wisdom...just want you to know I will keep you both in my prayers.
    Stay strong,
    Jane
  • chrisk06
    chrisk06 Member Posts: 110
    #3
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    Susan,
    I too have no words
    Susan,

    I too have no words of wisdom, but my prayers are with you both. I know how hard it is! Tons of hugs and prayers coming your way.


    {{{BIG HUGS}}}
    Chris
  • K_ann1015
    K_ann1015 Member Posts: 500
    #4
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    Susan,
    I am so sorry to
    Susan,
    I am so sorry to hear of the struggles you and Paul have had and are having. I will keep you both in my prayers. This has to be so hard for you both...
    Kim
  • Duane61
    Duane61 Member Posts: 29
    #5
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    Prayers
    I will continue to keep both of you in my daily prayers.

    Duane61
  • Betty in Vegas
    Betty in Vegas Member Posts: 290 Member
    #6
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    I am so sorry
    You are in my prayers, Susan. I will be thinking of you and praying for you --please update on not just Paul, but on you. How are YOU doing?

    Betty
  • unclaw2002
    unclaw2002 Member Posts: 599
    #7
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    Susan,
    My thoughts and
    Susan,

    My thoughts and prayers are with you. Try and pamper yourself just a little with a cup of tea or something that brings you comfort. This must be so hard for you words just don't seem to help.

    Cindy
  • mumphy
    mumphy Member Posts: 440
    #8
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    unclaw2002 said:

    Susan,
    My thoughts and
    Susan,

    My thoughts and prayers are with you. Try and pamper yourself just a little with a cup of tea or something that brings you comfort. This must be so hard for you words just don't seem to help.

    Cindy

    So Sorry!!
    Susan I am so sorry that you had to hear those words. My heart goes out to you.
    I wish I could find the words that you need to comfort you. Just know You and you family are in my prayers.

    God Bless,
    Kath
  • lindadanis
    lindadanis Member Posts: 235
    #9
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    what is residental hospice if you do not mind me asking and are they expensive?
  • chrisk06
    chrisk06 Member Posts: 110
    #10
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    lindadanis said:

    what is residental hospice if you do not mind me asking and are they expensive?

    Linda,
    Residential Hospice
    Linda,

    Residential Hospice is a Hospice home. They are facilities that look like a huge home with seperate rooms. They are nice. My mother in Law was in one for 3 days until they could get her in the nursing home hospice room. They are nice and the people are great. As far as price, I'm not sure cause she was on Medicare. I would think they would be pricey. If you have insurance chesk with them. How is Ed?

    {{{BIG HUGE HUGS}}}
    Chris
  • lindadanis
    lindadanis Member Posts: 235
    #11
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    chrisk06 said:

    Linda,
    Residential Hospice
    Linda,

    Residential Hospice is a Hospice home. They are facilities that look like a huge home with seperate rooms. They are nice. My mother in Law was in one for 3 days until they could get her in the nursing home hospice room. They are nice and the people are great. As far as price, I'm not sure cause she was on Medicare. I would think they would be pricey. If you have insurance chesk with them. How is Ed?

    {{{BIG HUGE HUGS}}}
    Chris

    Hello
    Ed is doing a bit better, coming out of his room after 11 days in it, 24 hours day. We saw the doctor yesterday and he said it was "Ed" not fighting, because the chemo he is on does not cause this., anyways, Ed will not up his paxill so his doctor is kind of at wits end with him. He is eating a little and drinking somewhat but could do alot better. I think I am just getting to the point that I cannot help him anymore than what I have done for the past six months, you have to fight this "beast" yourself and I believe that this comes from within, no one can give it to you, if you know what I mean. I am up and down all the time and so is my daughter. they are going to give him three rounds then do a pet scan and if nothing changes, they will probably offer pallative radiation, that's it. I am very depressed but on the other hand, I cannot make him fight. I have accepted this. thanks to everyone who has been replying to my posts and asking how we are doing.

    Linda
  • chrisk06
    chrisk06 Member Posts: 110
    #12
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    lindadanis said:

    Hello
    Ed is doing a bit better, coming out of his room after 11 days in it, 24 hours day. We saw the doctor yesterday and he said it was "Ed" not fighting, because the chemo he is on does not cause this., anyways, Ed will not up his paxill so his doctor is kind of at wits end with him. He is eating a little and drinking somewhat but could do alot better. I think I am just getting to the point that I cannot help him anymore than what I have done for the past six months, you have to fight this "beast" yourself and I believe that this comes from within, no one can give it to you, if you know what I mean. I am up and down all the time and so is my daughter. they are going to give him three rounds then do a pet scan and if nothing changes, they will probably offer pallative radiation, that's it. I am very depressed but on the other hand, I cannot make him fight. I have accepted this. thanks to everyone who has been replying to my posts and asking how we are doing.

    Linda

    Linda,
    WOW...does all that
    Linda,

    WOW...does all that sound like Steve. I just pray that Ed makes the choice to fight. I keep both of you, as well as all the others on this site, in my prayers! Stay stong!

    {{{BIG HUGE HUGS}}}
    Chris
  • K_ann1015
    K_ann1015 Member Posts: 500
    #13
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    lindadanis said:

    Hello
    Ed is doing a bit better, coming out of his room after 11 days in it, 24 hours day. We saw the doctor yesterday and he said it was "Ed" not fighting, because the chemo he is on does not cause this., anyways, Ed will not up his paxill so his doctor is kind of at wits end with him. He is eating a little and drinking somewhat but could do alot better. I think I am just getting to the point that I cannot help him anymore than what I have done for the past six months, you have to fight this "beast" yourself and I believe that this comes from within, no one can give it to you, if you know what I mean. I am up and down all the time and so is my daughter. they are going to give him three rounds then do a pet scan and if nothing changes, they will probably offer pallative radiation, that's it. I am very depressed but on the other hand, I cannot make him fight. I have accepted this. thanks to everyone who has been replying to my posts and asking how we are doing.

    Linda

    Linda,
    I think you are
    Linda,

    I think you are right---there is point when the patient just can't fight anymore...maybe they know what their body can take? He needs your love & support now more than ever. It will be easier for you if you don't have to push him to eat.

    But also---he is probably weakened by being in that hospital room for so long--I can't remember, but does he have a feeding tube? Maybe just having him hydrated and some nutrition will help him FEEL better. Often that can help one feel more like yourself and then actually be able to feel like fighting... Hang in there---sorry, I am rambling--just know there are many here who are praying and thinking of you, your husband and daughter...
    Kim
  • lindadanis
    lindadanis Member Posts: 235
    #14
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    K_ann1015 said:

    Linda,
    I think you are
    Linda,

    I think you are right---there is point when the patient just can't fight anymore...maybe they know what their body can take? He needs your love & support now more than ever. It will be easier for you if you don't have to push him to eat.

    But also---he is probably weakened by being in that hospital room for so long--I can't remember, but does he have a feeding tube? Maybe just having him hydrated and some nutrition will help him FEEL better. Often that can help one feel more like yourself and then actually be able to feel like fighting... Hang in there---sorry, I am rambling--just know there are many here who are praying and thinking of you, your husband and daughter...
    Kim

    Hi again
    Ed wasn't in the hospital he was in the oncologists office yesterday getting fluids., but all of you are right, he is the one who has to fight, I cannot make him do it nor can I make him do anything at all, after six months, I have come to realize that I am hopeless in this matter, and yes, although I love him dearly, there isn't a thing I can do to change this situation and I have realized that. It is a very very long road watching my husband decline both physically and mentally and I just wish that he never had to go through this. This cancer is a terrible cancer, spreads like wild fire, and sometimes the chemo just cannot catch up to it. I am hoping and praying that this new chemo treatment plan he is on will do something positive, at least, to give him some hope. This cancer came out of the blue, it hits all of us hard, and the days turn into months and months and I sit at night and think "what happened to our lives"., as I am sure he is thinking all the time. I know the doctors do their best but sometimes it just isn't enough, I can tell you tha we have a very good doctor who cares about him and myself and my daughter, but in the end, he is still human who has tried his best. I have days and moments where I could just jump out of my skin, but honestly, I know that I have to take care of myself to be there for my daughter in the end.
    I thank everyone of you who have sent me emails and I continue to help all of you if I can.
    thanks so much for your kindess and concern. Maybe tomorrow will be different!!!!

    Linda
  • MAE66
    MAE66 Member Posts: 66
    #15
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    lindadanis said:

    what is residental hospice if you do not mind me asking and are they expensive?

    The Hospice where Paul is a non profit run by Centrua Health, which has several Hospitals in the Denver area. Not all hospice facilities take "routine care" patients, this one does. My understanding is that Medicare will pay for in home Hospice, but not for the 24 hour care provided by a resisential one. The out of pocket cost here is $250 a day, which is much lower than the nursing homes I looked at. Paul does not have Medicare, but our private insurance is covering the cost, which is a drop in the bucket compared to cost of treating this disease.

    Paul is hanging in there, he is still fighting for every day he is given. Thank you for all the prayers and I continus to pray for all of you.

    Susan
  • Donna70
    Donna70 Member Posts: 852 Member
    #16
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    MAE66 said:

    The Hospice where Paul is a non profit run by Centrua Health, which has several Hospitals in the Denver area. Not all hospice facilities take "routine care" patients, this one does. My understanding is that Medicare will pay for in home Hospice, but not for the 24 hour care provided by a resisential one. The out of pocket cost here is $250 a day, which is much lower than the nursing homes I looked at. Paul does not have Medicare, but our private insurance is covering the cost, which is a drop in the bucket compared to cost of treating this disease.

    Paul is hanging in there, he is still fighting for every day he is given. Thank you for all the prayers and I continus to pray for all of you.

    Susan

    Paul
    Susan,
    My prayers will continue for you and Paul, have no words except wish this would not be happening. take care and stay strong, prayers always,
    Donna70

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