my dad

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emg09
emg09 Member Posts: 228
edited March 2014 in Esophageal Cancer #1
Well, I don't even know where to begin with this. My dad was having regrets after signing the consent form to stop his chemo. He felt the Dr. pushed him into doing this. Well, my parents left for California Wed. morning to meet with a Holistic/Alternative Medicine. My dad said this is the last favor he will be doing for my mom and her sister's. 3 of her sister's have met with this man for various illnesses and all are doing great now. None of had cancer, stage 4. Anyway, they will be out there for 6 weeks. He is starting his 1st treatment today. The cost is so high, I'm so worried about this. I'm just not even sure how I should be feeling about his. He told my parents that he has not lost a patient yet and that my dad will not be his 1st. I really worry about them having a false sense. My mom said she told him they are putting all their faith in him and he said not to do that, trust in God. For lack of a better word, I'm feeling weirded out over this. Anyway, just wanted to update everyone. The one piece of information that sounded resonable... My dad has HORRIBLE teeth. He HATED going to the dentist. He had his upper teeth pulled a few years ago. Next week he'll have the bottom teeth removed. The man told my parents that even the slightest gum infection can lead to MANY health issues. SO,it's so important to have a healthy mouth. That's an update for now. I'll keep everyone posted. I hate them being on the other side of the country!!! I'm in Maryland!!!

Erika

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  • Unknown
    Unknown
    #2
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  • Donna70
    Donna70 Member Posts: 852 Member
    #3
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    unknown said:

    This comment has been removed by the Moderator

    your Dad
    Hi Erika,
    Boy how I wish your Dad would have given St. Joe's a chance instead of California. I don't like the sound of what you are describing esp. the high cost and also the promises. How brave your Dad is to go on a journey like that. I can't imagine how helpless you feel being here with your Dad and mom on the other coast. I will keep you all in my prayers and hope that there is a good outcome to all this. I don't know if he would have been given better odds here in Baltimore, but maybe more honesty but maybe a kinder way than the Hopkins dr has done. Can't imagine a patient like your Dad wanting the chemo and the dr not giving any other options. Stay strong, prayers always!!
    Donna70
  • Unknown
    Unknown
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  • unclaw2002
    unclaw2002 Member Posts: 599
    #5
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    Erika,
    Probably the hardest
    Erika,

    Probably the hardest thing being a daughter of a dad with EC is that while they really seem to rely on us for support and help and questions at the end of the day --- the decisions are my dad and moms and even if I don't agree I really don't have a voice. It is so hard to see them do things that we question or don't agree with. Giving up control and letting things happen has been really hard for me --- and I to am far away in Delaware with my Dad getting treatment in New Orleans. When I talked my dad into a 2nd opinion up here at Sloan I thought I had a chance to get him to get treated at one of the best places in the US --- but my mother did not want to be away from home and for her he went back to New Orleans for treatment saying if he had surgery he would go back to Sloan and he wanted the oncologist at Sloan to coordiante his treatment. Well it hasn't worked out like he thought, he doesn't like the treatment he is getting in New Orleans but he is kinda stuck because my mother still wouldn't want to get the treatment away from her house. He even called me and asked if I could get another appointment for him in NY, then called back a couple of hours later and said forget it. And I can only sit by and watch events unfold.

    So I am frustrated as I hear the fear in his voice knowing he is making choices to please my mom and make her happy, even though he fears it may not be best for his health. I fought hard to get him treatment here, pleaded and begged with them but they did not agree and went back home (I even paid their travel expenses so there was no excuse to not get the 2nd opinion). I guess even though I am having a hard time accepting I have to that this is my dad's decision and only he knows what he thinks is best for his life. At 78 I am sure you look at the future a little differently and when you have an EC diagnosis I imagine it changes all the rules and makes time even more urgent.

    Keep the faith.

    Cindy
  • emg09
    emg09 Member Posts: 228
    #6
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    unclaw2002 said:

    Erika,
    Probably the hardest
    Erika,

    Probably the hardest thing being a daughter of a dad with EC is that while they really seem to rely on us for support and help and questions at the end of the day --- the decisions are my dad and moms and even if I don't agree I really don't have a voice. It is so hard to see them do things that we question or don't agree with. Giving up control and letting things happen has been really hard for me --- and I to am far away in Delaware with my Dad getting treatment in New Orleans. When I talked my dad into a 2nd opinion up here at Sloan I thought I had a chance to get him to get treated at one of the best places in the US --- but my mother did not want to be away from home and for her he went back to New Orleans for treatment saying if he had surgery he would go back to Sloan and he wanted the oncologist at Sloan to coordiante his treatment. Well it hasn't worked out like he thought, he doesn't like the treatment he is getting in New Orleans but he is kinda stuck because my mother still wouldn't want to get the treatment away from her house. He even called me and asked if I could get another appointment for him in NY, then called back a couple of hours later and said forget it. And I can only sit by and watch events unfold.

    So I am frustrated as I hear the fear in his voice knowing he is making choices to please my mom and make her happy, even though he fears it may not be best for his health. I fought hard to get him treatment here, pleaded and begged with them but they did not agree and went back home (I even paid their travel expenses so there was no excuse to not get the 2nd opinion). I guess even though I am having a hard time accepting I have to that this is my dad's decision and only he knows what he thinks is best for his life. At 78 I am sure you look at the future a little differently and when you have an EC diagnosis I imagine it changes all the rules and makes time even more urgent.

    Keep the faith.

    Cindy

    Thanks
    Things aren't going smoothly, my dad doesn't like the taste of ANY of the supplements he's been trying to take. He's back to being mean to my mom. She asked if he wants to come home and he's really said nothing. He's extrememly depressed and sounds to me like he's ready to just go a head and die. It's so hard to hear, but this is the choice they both made and as long as my mom can say and feel like she tried everything for him, that's going to have to be good enough for me. I was hoping that maybe he would regain some strenght but it's just not happening. So, I feel like I'm just sitting and waiting for that dreaded call to come. She's going to start using the feeding tube again, so maybe that will help. Thanks for listening!!
    Erika
  • Donna70
    Donna70 Member Posts: 852 Member
    #7
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    emg09 said:

    Thanks
    Things aren't going smoothly, my dad doesn't like the taste of ANY of the supplements he's been trying to take. He's back to being mean to my mom. She asked if he wants to come home and he's really said nothing. He's extrememly depressed and sounds to me like he's ready to just go a head and die. It's so hard to hear, but this is the choice they both made and as long as my mom can say and feel like she tried everything for him, that's going to have to be good enough for me. I was hoping that maybe he would regain some strenght but it's just not happening. So, I feel like I'm just sitting and waiting for that dreaded call to come. She's going to start using the feeding tube again, so maybe that will help. Thanks for listening!!
    Erika

    your Dad
    Hi Erika,
    Sorry to hear how your Dad is doing out in California, it must be terribly hard for you to hear all of this and be so far away. I hope your Mom does alright with the feeding tube since they had so many problems here and am wondering if the alternative med people can help with that. I will keep praying. Your Dad must be so tired and maybe he does want to be in his own home at this time but your Mom wants to do everything she can, so it is like being caught between a rock and a hard place. Prayers and hopes for a better outcome. take care,
    Donna70
  • Unknown
    Unknown
    #8
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    unclaw2002 said:

    Erika,
    Probably the hardest
    Erika,

    Probably the hardest thing being a daughter of a dad with EC is that while they really seem to rely on us for support and help and questions at the end of the day --- the decisions are my dad and moms and even if I don't agree I really don't have a voice. It is so hard to see them do things that we question or don't agree with. Giving up control and letting things happen has been really hard for me --- and I to am far away in Delaware with my Dad getting treatment in New Orleans. When I talked my dad into a 2nd opinion up here at Sloan I thought I had a chance to get him to get treated at one of the best places in the US --- but my mother did not want to be away from home and for her he went back to New Orleans for treatment saying if he had surgery he would go back to Sloan and he wanted the oncologist at Sloan to coordiante his treatment. Well it hasn't worked out like he thought, he doesn't like the treatment he is getting in New Orleans but he is kinda stuck because my mother still wouldn't want to get the treatment away from her house. He even called me and asked if I could get another appointment for him in NY, then called back a couple of hours later and said forget it. And I can only sit by and watch events unfold.

    So I am frustrated as I hear the fear in his voice knowing he is making choices to please my mom and make her happy, even though he fears it may not be best for his health. I fought hard to get him treatment here, pleaded and begged with them but they did not agree and went back home (I even paid their travel expenses so there was no excuse to not get the 2nd opinion). I guess even though I am having a hard time accepting I have to that this is my dad's decision and only he knows what he thinks is best for his life. At 78 I am sure you look at the future a little differently and when you have an EC diagnosis I imagine it changes all the rules and makes time even more urgent.

    Keep the faith.

    Cindy

    This comment has been removed by the Moderator
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #9
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    emg09 said:

    Thanks
    Things aren't going smoothly, my dad doesn't like the taste of ANY of the supplements he's been trying to take. He's back to being mean to my mom. She asked if he wants to come home and he's really said nothing. He's extrememly depressed and sounds to me like he's ready to just go a head and die. It's so hard to hear, but this is the choice they both made and as long as my mom can say and feel like she tried everything for him, that's going to have to be good enough for me. I was hoping that maybe he would regain some strenght but it's just not happening. So, I feel like I'm just sitting and waiting for that dreaded call to come. She's going to start using the feeding tube again, so maybe that will help. Thanks for listening!!
    Erika

    Your Dad
    Hi Erika, Mom and Dad,
    I am so sorry that things are not going well for you. You have all done so much. It does come to a time when you do have to listen to what your dad wants to do next. It is his decision that will count most.
    If he is not ready to discuss his thoughts just yet, that is ok. He will in his own time. He will take his anger out on anyone who is there. That is normal. He will also regret this, and soon apologize. Let him make the next decisions as to what to do next. You and your mom will feel better letting him get back some of his control. I will be thinking and praying for you all. Thank you for your condolences.
    Love,
    Tina

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