Mr. Marshall I was reading your post and great words of wisdom again

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lindadanis
lindadanis Member Posts: 235
edited March 2014 in Esophageal Cancer #1
Dear William: I was just reading your post to that daughter whose dad has stage four cancer and I was reading about the patients who hold up in their room, withdrawing from everyone, etc., and I thought of my Ed. You know who I am talking about, you sent me a very long post about a week ago about him and his lack of fight with this horrible cancer. An quick update on my husband. Eddie is in his fifth session of chemo, has been in his room for almost six months going back to last October when he heard the word "cancer" and he basically stays in his room 23 hours a day. He does have a 22 year old daughter who dotes on her dad, bringing him food, pills, everything you can think off as I sit downstairs and stir at the walls., wondering "what happened to my husband of 24 years", why doesn't he have anything to say to me, what happened, what happened". I have been asking myself this for almost five months now and I still do not have the answers, but William, you gave me some answers in your post last week. Some people just do not handle cancer, at all. Ed withdrew the day he was told, he told me that day to get a recliner for his bedroom because this is where he would be spending his time, and believe me, he has., in his bedroom. I feel that he died last October 7th, just waiting to bury him. It is so sad, I feel so bad for him, for my daughter, for us. You are a great man William, you always reach out and try to help us understand what goes on in the mind of a cancer victim. I believe that he never had the fight to live, he has failure to thrive now and only time will tell how long he is on this earth. I see the horrible mental pain in his face daily when I go into his room, he barely speaks to me, he looks terrified. What do you say to a man who is dying William? What can I do to help him fight? I have finally figured out-Nothing., that is what I can do, but just be here for him if he needs me. He told his doctor this week that his pain level is 0. I believe his mental pain is 100%- doctor cannot fix that, can he? I just wanted to post and say I always read your postings and thank you very much for you always kind words.

Linda

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  • lindadanis
    lindadanis Member Posts: 235
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    unknown said:

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    my husband
    Dear William, yes, I did take some of your advice and have taken my daughter out of this house, and yes, she does have chronic lyme disease which she has been battling since age 15 and she is now 22. He is, as we speak, sitting in the livingroom, watching a movie, this has been the first time this week. I believe in your words, that if he can get out for chemo, he can come downstairs and spend time with us. Yes, he did say he wanted a recliner way back in October, which I refused to buy, so he spends most of his days/nights in bed watching his own t.v. I do believe that he is suffering from depression, I do believe that most cancer victims do, however, he has been very reluctant to up his paxill so his doctor basically does not know what to do with him. He has always been a very stubborn man and I do believe that he is even stubborn in the way he wants to die. He has basically cut me off, my daughter spends alot of time upstairs in his room with him, I do not. I feel that I am only enabling him to stay in his room if I continue to climb 17 steps all day long. I am very very sad at this time William, you have helped me out so much, he is the most difficult person that this website has probably ever heard of. I am now starting to think that yes, spring is here, and my daughter and I will be going out more, like you said, just for a walk, shoppping, etc., our lives do need to continue on. I am very saddened by the fact that he does not seem to want to talk to me, want to discuss our future (meaning Diana's and mine) and yes, I do believe that he is being selfish to a degree. He is on xeloda and oxcyplatin iv chemo so I am sure they make him fatigued but not to this degree. He never wanted a feeding tube nor did his doctor want to put one in., he has lost almost 88 pounds, I do not even recognize him William, it is so sad. His eating and drinking is getting less and less and yes, maybe this is how he takes control of his life now. I am learning to accept all of this, each day it is a learning step for me, but I am going to take your adivce and starting accepting him and try to live a little. thank you so much for helping me see the light.
    Linda
  • lindadanis
    lindadanis Member Posts: 235
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    lindadanis said:

    my husband
    Dear William, yes, I did take some of your advice and have taken my daughter out of this house, and yes, she does have chronic lyme disease which she has been battling since age 15 and she is now 22. He is, as we speak, sitting in the livingroom, watching a movie, this has been the first time this week. I believe in your words, that if he can get out for chemo, he can come downstairs and spend time with us. Yes, he did say he wanted a recliner way back in October, which I refused to buy, so he spends most of his days/nights in bed watching his own t.v. I do believe that he is suffering from depression, I do believe that most cancer victims do, however, he has been very reluctant to up his paxill so his doctor basically does not know what to do with him. He has always been a very stubborn man and I do believe that he is even stubborn in the way he wants to die. He has basically cut me off, my daughter spends alot of time upstairs in his room with him, I do not. I feel that I am only enabling him to stay in his room if I continue to climb 17 steps all day long. I am very very sad at this time William, you have helped me out so much, he is the most difficult person that this website has probably ever heard of. I am now starting to think that yes, spring is here, and my daughter and I will be going out more, like you said, just for a walk, shoppping, etc., our lives do need to continue on. I am very saddened by the fact that he does not seem to want to talk to me, want to discuss our future (meaning Diana's and mine) and yes, I do believe that he is being selfish to a degree. He is on xeloda and oxcyplatin iv chemo so I am sure they make him fatigued but not to this degree. He never wanted a feeding tube nor did his doctor want to put one in., he has lost almost 88 pounds, I do not even recognize him William, it is so sad. His eating and drinking is getting less and less and yes, maybe this is how he takes control of his life now. I am learning to accept all of this, each day it is a learning step for me, but I am going to take your adivce and starting accepting him and try to live a little. thank you so much for helping me see the light.
    Linda

    its me again
    I wanted to give you some info on ed., his father died a long time ago of colon cancer, ed remembers him suffering terribly from the chemo so eddie did not want to do chemo right from the beginning. He has had three rounds of cisplatin/campostar, did a pet scan in february, showed cancer still growing so the doctor changed it to the xeloda/oxcyplatin, two weeks on 3000 mg daily for fourteen days, one iv infusion every 21 days of the other chemo. He is just finishing his second round, doctor wants to do one more round then another pet scan. Ed has had nothing but bad news right from the beginning, he was diagnosed stage four with mets to stomach, pelvis, liver, etc., just wanted to give you the entire story. Oh by the way, I am considering you my father if you do not mind (haha), I have lost my father to cancer, do not have a grandfather so I have no male influence in my life whatsoever other than my husband, so I hope you do not mind me thinking of you as my "dad". thanks William so much.
    Linda PS I am praying that the next pet scan will show some improvement because if it doesn't, ed will just give up totally.
  • Unknown
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    lindadanis said:

    its me again
    I wanted to give you some info on ed., his father died a long time ago of colon cancer, ed remembers him suffering terribly from the chemo so eddie did not want to do chemo right from the beginning. He has had three rounds of cisplatin/campostar, did a pet scan in february, showed cancer still growing so the doctor changed it to the xeloda/oxcyplatin, two weeks on 3000 mg daily for fourteen days, one iv infusion every 21 days of the other chemo. He is just finishing his second round, doctor wants to do one more round then another pet scan. Ed has had nothing but bad news right from the beginning, he was diagnosed stage four with mets to stomach, pelvis, liver, etc., just wanted to give you the entire story. Oh by the way, I am considering you my father if you do not mind (haha), I have lost my father to cancer, do not have a grandfather so I have no male influence in my life whatsoever other than my husband, so I hope you do not mind me thinking of you as my "dad". thanks William so much.
    Linda PS I am praying that the next pet scan will show some improvement because if it doesn't, ed will just give up totally.

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  • lindadanis
    lindadanis Member Posts: 235
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    unknown said:

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    my family
    William you are so funny and yes, I have spoken to Lori many times. she is great. No, I do not believe that you can claim me on your taxes but I do find great comfort knowing that you are there for me when I need your words of wisdom. I am beyond the screaming stage, I have learned over the past six months that screaming does not get me anywhere. For the past five months Ed wanted a motorcycle (he has not been on one in 30 years) and we had our fights about this topic, believe me., to make a long story short, I told him that if he couldn't come downstairs with us then why would I buy him a bike., when in fact, he tells me that he is too sick to come down. He has not spoken to me weeks on end about this bike topic but now it seems to have ended.

    I do not know if he wants to join his father, I do believe what his doctor told me back in october., he said "Ed doesn't have the fight in him and the oncologist would not let him have chemo for three weeks until he felt Ed would be strong enough to go into the infusion room.
    Long story short again, this doctor has figured out my husband way back then because he said to me last week "I cannot make Ed decide on how he wants to die, if he wants to stay in his room, then leave him alone"., he did have a private conversation with Ed about this but nothing ever changed.

    Well again, Mr. Marshall, thank you for your time in writing to me.

    Linda

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