A new update on Eddie

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lindadanis
lindadanis Member Posts: 235
edited March 2014 in Esophageal Cancer #1
Ed started his third round of oxiplatin and xeloda today and then the dreaded pet scan comes in two weeks. The oncologist had to sit him down today and say "NO" to this ridiculous idea of a new motorcycle and Eddie was not a happy man., started telling the doctor he is 56 years old and can make his own decisions so from what I hear about this appt that I did not attend to today by my daughter, the doctor asked her to leave the room and she heard him saying " eddie, I do not know what the pet scan will show, this is your 6th round of chemo and if it doesn't show much, then I will probably have nothing else to offer you". I think the doctor is starting to get real with him , trying to put "Ed" into the real world about this horrible cancer that he has and that maybe, just maybe, we are coming to the end of our road. Ed has stage four with mets to liver, stomach, pelvis according to his last pet scan of february 2010. I believe he was trying to get eddie to face up to what he is dealing with and STOP fighting with us about this crazy idea of a motorcycle. I started to feel sad but also some relief that our oncologist took this approach. He has lived with this since last october being staged at 4 with mets right from the start. He is eating better, not sure why, maybe chemo is doing something to the esphogus but I believe the doctor is worred in general about ALL THE METS. Just wanted to update everyone who has been so kind to post of my postings. it has been a long road with Eddie, alot of fighting over nonsense stuff and honestly, I feel bad that all these past six months have been waste on nothing. I can only hope that whatever time we have left together will be of some quality for us and for our daughter who has been a saint throughout this ordeal including being dad's fulltime nurse.
I often wonder will he give up on this bike idea, will he come out of his room which he has been in for six months and see the light. Time is so precious, you cannot take it for granted. This is what cancer has taught me as I'm sure it has taught all of you.
thanks for asking about us and I will keep you posted. Also William, you are correct, we have to take care of ourselves also, I am trying to do this now after speaking with you.
Your words are always on my mind.

Linda

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  • Donna70
    Donna70 Member Posts: 852 Member
    #2
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    thanks for the update
    Hi Linda,
    Thanks for the update. I often wonder how you hold on, don't know if I could in the same situation. Maybe the dr needs to get real about the bike. It must be what your husband sees as hope if he could only ride the bike. But in his weakened state, it would not be good or maybe even possible. I will keep you all in my prayers and am glad that you have decided that you and your daughter need some time for yourselves, if the caregiver doesn't take care of themself they can't have enough to give to the sick one. take care, prayers always,
    Donna70
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #3
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    Thanks for the Update
    Hi Linda,
    So glad to hear from you. I have been wondering what has been going on will all of you. I am hoping Ed listens to the dr. regarding the bike. Sometimes they will listen to the dr. before they listen to "us". Wow six rounds of chemo and no change? I must give Ed credit to keep trying to kill this cancer. Glad to hear his appetitite has improved. And I do remember you telling us he came out and watched t.v. with you and your daughter recently. I don't know....maybe he is slowly coming to the realization of what is really happening. At least you and your daughter know that you are doing all that you can for him. Cherish these last times with him. Make him aware of all of your feelings. I am thinking he will be coming around. Best of luck to you all. Do take sometime for yourselves. God bless and keep us posted. We are all thinking of you!
    Tina
  • lindadanis
    lindadanis Member Posts: 235
    #4
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    Tina Blondek said:

    Thanks for the Update
    Hi Linda,
    So glad to hear from you. I have been wondering what has been going on will all of you. I am hoping Ed listens to the dr. regarding the bike. Sometimes they will listen to the dr. before they listen to "us". Wow six rounds of chemo and no change? I must give Ed credit to keep trying to kill this cancer. Glad to hear his appetitite has improved. And I do remember you telling us he came out and watched t.v. with you and your daughter recently. I don't know....maybe he is slowly coming to the realization of what is really happening. At least you and your daughter know that you are doing all that you can for him. Cherish these last times with him. Make him aware of all of your feelings. I am thinking he will be coming around. Best of luck to you all. Do take sometime for yourselves. God bless and keep us posted. We are all thinking of you!
    Tina

    a bad update
    Well I thought the doctor got through him yesterday about no driving a car nor a bike but when I came home today, guess what, there are pictures on the table of motorcycles again, man, I am just sick of this crap, when is he going to understand that he cannot ride a bike, I am now wondering if he thinks this may be his way out!!!! He is a very very stubborn man and we had another fight today about this issue and I am not talking to him anymore. I cannot understand a man, 56 years old, who has not been on a bike since age 24, continuing this crap and honestly I feel like I am just done. His doctor said yesterday that after this round of chemo he would do a pet scan and if no big changes, then he is done. No more treatment options, wouldn't you think that that statement would penetrate into his head and he would get on to more important issues in his life like me and his daughter, who has been nothing but a nurse to him 24 hours a day since last October. I am sure you can see that I am very very angry. I am just sick of this selfishness on his behalf.
    Linda
  • Unknown
    Unknown
    #5
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    lindadanis said:

    a bad update
    Well I thought the doctor got through him yesterday about no driving a car nor a bike but when I came home today, guess what, there are pictures on the table of motorcycles again, man, I am just sick of this crap, when is he going to understand that he cannot ride a bike, I am now wondering if he thinks this may be his way out!!!! He is a very very stubborn man and we had another fight today about this issue and I am not talking to him anymore. I cannot understand a man, 56 years old, who has not been on a bike since age 24, continuing this crap and honestly I feel like I am just done. His doctor said yesterday that after this round of chemo he would do a pet scan and if no big changes, then he is done. No more treatment options, wouldn't you think that that statement would penetrate into his head and he would get on to more important issues in his life like me and his daughter, who has been nothing but a nurse to him 24 hours a day since last October. I am sure you can see that I am very very angry. I am just sick of this selfishness on his behalf.
    Linda

    This comment has been removed by the Moderator
  • tribaltina
    tribaltina Member Posts: 5
    #6
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    unknown said:

    This comment has been removed by the Moderator

    Just a thought here
    Men can be stubborn! You can't play into his "pity party" because when you give up, he gives up. He is taking all of this in, men have to internalize where we will vocalize.

    You have to play the game by his rules not yours, we already know he isn't giving up so give in (or at least act like you are) First go to the license bureau and get the motorcycle handbook for the test he will have to take to get the license and lay it on top of the photos on the kitchen table without saying a word. Second Call your local motorcycle dealer and explain the situation, maybe they can have a salesman that will have the right attitude with him. Take him to see them, let him sit on the bikes, etc etc. Either he will come to the realization that he can't ride alone again, or he the salesman will let him know. Also ask that dealer if there is a local club, call them and see if there is a cancer survivor in the group that might be willing to take him for rides! Compassion from others goes a long way!

    He's looking back at lost youth, vitality. In our 20's we think we are invincible and will live forever! Hearing the discouraging words of late he is realizing that we don't live forever and he is mad and trying to hold onto all that he thought life could have been.

    We solved the room issue with my sister by putting the bed to the livingroom! She has to face everyone that walks in that door! You may want to try that.

    Just my 2 cents, Good Luck with what ever you decide to do, will be praying for you and your family.

    Tina 3
  • MOE58
    MOE58 Member Posts: 589 Member
    #7
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    MOTORCYCLE
    Well, I had to post this, only because you are fighting a never ending battle, the other day I came home and found one sitting in our yard, Yep you guessed Jeff bought one, I said well GOD gave you a second chance to live so now you are going to go ride this now and possible get killed his answer was i am the one that got this disease and survived I am enjoying rest of my life on eart.

    I just shook my head and headed to the car and went to a friends. I couldn't believe he bought one, never wanted one until he was diagnosed with EC, and met KITTEN who also had one, so now he has one.

    He doesn't have his license yet nor anything else but he has a nice cycle.

    What is the DEAL with motorcycles?

    Lori/moe
  • lindadanis
    lindadanis Member Posts: 235
    #8
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    MOE58 said:

    MOTORCYCLE
    Well, I had to post this, only because you are fighting a never ending battle, the other day I came home and found one sitting in our yard, Yep you guessed Jeff bought one, I said well GOD gave you a second chance to live so now you are going to go ride this now and possible get killed his answer was i am the one that got this disease and survived I am enjoying rest of my life on eart.

    I just shook my head and headed to the car and went to a friends. I couldn't believe he bought one, never wanted one until he was diagnosed with EC, and met KITTEN who also had one, so now he has one.

    He doesn't have his license yet nor anything else but he has a nice cycle.

    What is the DEAL with motorcycles?

    Lori/moe

    lori
    I just read your comment about your husband and his new toy, I don't get it, I don't know where this idea comes from but I am not going to do it because I have way too many concerns about the safety of one. Good luck with your husband and his new toy. How is your husband doing, at what stage is his cancer and is he in treatment still Lori?
    Linda
  • redden
    redden Member Posts: 5
    #9
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    MOE58 said:

    MOTORCYCLE
    Well, I had to post this, only because you are fighting a never ending battle, the other day I came home and found one sitting in our yard, Yep you guessed Jeff bought one, I said well GOD gave you a second chance to live so now you are going to go ride this now and possible get killed his answer was i am the one that got this disease and survived I am enjoying rest of my life on eart.

    I just shook my head and headed to the car and went to a friends. I couldn't believe he bought one, never wanted one until he was diagnosed with EC, and met KITTEN who also had one, so now he has one.

    He doesn't have his license yet nor anything else but he has a nice cycle.

    What is the DEAL with motorcycles?

    Lori/moe

    I've logged well over a
    I've logged well over a million miles on motorcycles in the hostile environment of Los Angeles. I've road raced and had a life threatening accident and more than a few get offs at triple digit speeds. I've learned some lessons about life and experienced feelings that have never been duplicated in any other way. I've come away with an unexplained and unshakable feeling that death is not something terrible nor something to be feared. In fact the worst possible thing, I believe is to live your life in fear. Some might say that it's not living at all.
    I also sincerely believe that these experiences allowed me to take the cancer in stride. I hope he enjoys many miles on his new cycle and hope he takes the MSF course first. http://www.msf-usa.org/
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #10
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    tribaltina said:

    Just a thought here
    Men can be stubborn! You can't play into his "pity party" because when you give up, he gives up. He is taking all of this in, men have to internalize where we will vocalize.

    You have to play the game by his rules not yours, we already know he isn't giving up so give in (or at least act like you are) First go to the license bureau and get the motorcycle handbook for the test he will have to take to get the license and lay it on top of the photos on the kitchen table without saying a word. Second Call your local motorcycle dealer and explain the situation, maybe they can have a salesman that will have the right attitude with him. Take him to see them, let him sit on the bikes, etc etc. Either he will come to the realization that he can't ride alone again, or he the salesman will let him know. Also ask that dealer if there is a local club, call them and see if there is a cancer survivor in the group that might be willing to take him for rides! Compassion from others goes a long way!

    He's looking back at lost youth, vitality. In our 20's we think we are invincible and will live forever! Hearing the discouraging words of late he is realizing that we don't live forever and he is mad and trying to hold onto all that he thought life could have been.

    We solved the room issue with my sister by putting the bed to the livingroom! She has to face everyone that walks in that door! You may want to try that.

    Just my 2 cents, Good Luck with what ever you decide to do, will be praying for you and your family.

    Tina 3

    Hi Tina 3,
    I like your post.
    Hi Tina 3,
    I like your post. I like your thoughts and suggestions for our friends, Linda and the ever determined "Ed". I agree, this just might work. Remember, he has to pass the test to get a motorcycle license. No test, no license, no riding the bike. And a cancer survivor biker! Another good idea. Hope you take these suggestions into consideration Linda, and best of luck to you all. As far as men and their "toys", I think that is just part of life, they all go through this. Different toys, but same situations. My husband has recently spent $1.000's on his newest hobby of metal detecting. I just let it go. Why fight about it? Life is too short. Ed might not really get his bike, but he can meet some bikers, make some new friends, and possibly go for a "ride" on a bike. Keep us posted Linda, I think of you often.
    Tina 2

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