an update on Ed

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lindadanis
lindadanis Member Posts: 235
edited March 2014 in Esophageal Cancer #1
Ed is going into his 10th whole had radiation treatment today, he is having 15 total. We saw his oncologist yesterday and he wants to restart chemo in a few weeks. I kind of got into an argument with him regading this because I feel Ed is too weak to restart chemo right now, he has five more treatments and then they will not do a ct scan of his head four weeks after radiation stops to see what it has done to his tumor. I feel that these doctors are so aggresive with their treatment. Ed can barely get out of bed due to be so tired nevertheless start more chemo. I guess he wants to keep going after the cancer in his body and I think that this is Ed's decision down the road. Oh well, we will just have to wait and see what happens. It has been a long long 9 1/2 months. Will keep you updated on how he is doing. Oh by the way, Diana and I went out Sunday and Ed decided to drive the car, what will happen next????

Linda

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  • sandy1943
    sandy1943 Member Posts: 824
    #2
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    I only had chemo. I never
    I only had chemo. I never asked my doctors any questions . I wish I had known this site back when I started chemo. I know my oncologists was surprised the surgeon didn't order radiation. I know I was glad at the time! They had to stop chemo on me post op because of what it was doing to me; but God was good and I went into remission. The fact that Ed wanted to drive proves he's still dancing!
  • tb7
    tb7 Member Posts: 52
    #3
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    I think you have earned your place in heaven!!
    Wow, Linda!

    You sure have been through a lot for quite a while now. I do feel for you, and I just wanted you to know that there are many here that are routing for you, Diana, and Ed. The dynamics within your family have certainly been challenging, and that, I am sure, is an understatement!

    I have always thought that it is difficult to really know someone. We all have the self that we present to the outside and the self that we know and experience inside. Sometimes the outside projection and the inside thoughts are consistent with each other. Other times, they are not in sync. Ed certainly has many sides!

    My mom used to say "to each his own" as a way to deal with behavior or opinions that she didn't agree with or understand. Maybe, that is the way to deal with Ed, accepting that he has his own ideas about his existence. It might make it easier for you and Diana to just go along, saying "whatever"! After all this time, Ed definitely is charting, and wants to chart, his own course.

    I hope you and Diana were not in the car with Ed. I wasn’t sure from your note if he went driving on his own while you were out, or if he insisted on driving you and Diana. If it is any consolation, my husband drove everywhere while he was in treatment. He hasn’t had all the treatments that Ed has been through, but it would have been difficult for him to not drive. Even my eighty-seven year old mom still wants to drive. It is a privilege that most people don’t want to give up until they really have to do so. My concern, and probably yours as well, is that you want to make sure that Ed and the other drivers on the road stay safe, and driving might not be the best idea right now.

    Many hopes and good wishes for you and your family . . . good luck in the upcoming treatments!

    Trisha
  • lindadanis
    lindadanis Member Posts: 235
    #4
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    tb7 said:

    I think you have earned your place in heaven!!
    Wow, Linda!

    You sure have been through a lot for quite a while now. I do feel for you, and I just wanted you to know that there are many here that are routing for you, Diana, and Ed. The dynamics within your family have certainly been challenging, and that, I am sure, is an understatement!

    I have always thought that it is difficult to really know someone. We all have the self that we present to the outside and the self that we know and experience inside. Sometimes the outside projection and the inside thoughts are consistent with each other. Other times, they are not in sync. Ed certainly has many sides!

    My mom used to say "to each his own" as a way to deal with behavior or opinions that she didn't agree with or understand. Maybe, that is the way to deal with Ed, accepting that he has his own ideas about his existence. It might make it easier for you and Diana to just go along, saying "whatever"! After all this time, Ed definitely is charting, and wants to chart, his own course.

    I hope you and Diana were not in the car with Ed. I wasn’t sure from your note if he went driving on his own while you were out, or if he insisted on driving you and Diana. If it is any consolation, my husband drove everywhere while he was in treatment. He hasn’t had all the treatments that Ed has been through, but it would have been difficult for him to not drive. Even my eighty-seven year old mom still wants to drive. It is a privilege that most people don’t want to give up until they really have to do so. My concern, and probably yours as well, is that you want to make sure that Ed and the other drivers on the road stay safe, and driving might not be the best idea right now.

    Many hopes and good wishes for you and your family . . . good luck in the upcoming treatments!

    Trisha

    thanks again
    thank you for replying, yes, we have had a very difficult past ten months. Ed is going to be finishing his whole brain radiation next tuesday, a total of 15 sessions, he is not tolerating it well, very tired, moody, etc. They will repeat the c/t in eight weeks to see what the radiation has done.
    thanks for inquiring.

    Linda
  • Unknown
    Unknown
    #5
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    lindadanis said:

    thanks again
    thank you for replying, yes, we have had a very difficult past ten months. Ed is going to be finishing his whole brain radiation next tuesday, a total of 15 sessions, he is not tolerating it well, very tired, moody, etc. They will repeat the c/t in eight weeks to see what the radiation has done.
    thanks for inquiring.

    Linda

    This comment has been removed by the Moderator
  • lindadanis
    lindadanis Member Posts: 235
    #6
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    unknown said:

    This comment has been removed by the Moderator

    William-no rides for us!!!!!!!!!!!!!!!!!!!
    William, no we were not in the car with Ed, we were at a cookout, first time we got out in months and my neighbor let me know that Ed took the car out, now he has no keys to any of the cards. Yes, it is tough, it has been the toughest year in my life, Ed is finishing is 15th round of whole brain radiation next tuesday and then the fun will begin!!!!! Things are the same, very apprehensive about this radiation, they are not doing a mri until mid september to see what it has done. Will keep you updated ok.

    thanks again,

    Linda
  • Unknown
    Unknown
    #7
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    lindadanis said:

    William-no rides for us!!!!!!!!!!!!!!!!!!!
    William, no we were not in the car with Ed, we were at a cookout, first time we got out in months and my neighbor let me know that Ed took the car out, now he has no keys to any of the cards. Yes, it is tough, it has been the toughest year in my life, Ed is finishing is 15th round of whole brain radiation next tuesday and then the fun will begin!!!!! Things are the same, very apprehensive about this radiation, they are not doing a mri until mid september to see what it has done. Will keep you updated ok.

    thanks again,

    Linda

    This comment has been removed by the Moderator
  • lindadanis
    lindadanis Member Posts: 235
    #8
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    unknown said:

    This comment has been removed by the Moderator

    no operation on Ed !!!
    No, Ed decided himself not to have brain surgery and I am agreeing with that decision!!!! yes, the bike keys are not around the house either. He is only doing whole brain radiation then I believe his doctor wants to him start chemo again, I told Ed "it is totally up to you, but I woud give my body a break!!"., I believe he will start chemo though William, as you said, he has his own mind and his own opinions. Things are the same I believe they will always be the same. Dr O'connor said last week that Ed should start chemo again because the other cancers in his body are probably growing since he hasn't had chemo since June. I do not agree with this but it is not my body and I told dr. O'connor that I didn't agree. These doctors are always pushing and pushing, never stopping. I wrote a long post about this and it really makes me mad because I am into "quality of life" rather than quantity. I do not believe that Ed has had one day of quality but that is my opinion. by the way, how are you doing William?

    Linda
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #9
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    lindadanis said:

    no operation on Ed !!!
    No, Ed decided himself not to have brain surgery and I am agreeing with that decision!!!! yes, the bike keys are not around the house either. He is only doing whole brain radiation then I believe his doctor wants to him start chemo again, I told Ed "it is totally up to you, but I woud give my body a break!!"., I believe he will start chemo though William, as you said, he has his own mind and his own opinions. Things are the same I believe they will always be the same. Dr O'connor said last week that Ed should start chemo again because the other cancers in his body are probably growing since he hasn't had chemo since June. I do not agree with this but it is not my body and I told dr. O'connor that I didn't agree. These doctors are always pushing and pushing, never stopping. I wrote a long post about this and it really makes me mad because I am into "quality of life" rather than quantity. I do not believe that Ed has had one day of quality but that is my opinion. by the way, how are you doing William?

    Linda

    Hey Linda
    In response to
    Hey Linda
    In response to your last post, I totally agree with you about the quality vs. quanity of life. If the person has no quality of life, what is the point? Hope Ed makes the right decisions. You and Dianna hang in there. Peace be with you all at one of the most difficult times of your lives.
    Tina

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