update on Ed

lindadanis
lindadanis Member Posts: 235
edited March 2014 in Esophageal Cancer #1
Well here is the update, Ed finished his 15 sessions of whole brain radiation last Tuesday and by Saturday he ended up in the er again, not sure what was going on but total mental confusion. Have conflicting opinions as to maybe his decadrone steroids were being tapered too soon and caused this mental confusion. Doctors suggested rehab for two weeks, he went last night and signed himself out this morning, the rehab was a dump!!!! Cannot say I blame him but oncologist very very pissed off because he signed himself out, brought him home this morning and back to visting nurses. New mri results of brain tumor about the same, actually not much changed. things have been very very tough around here, thought I would update all of you.

Linda

Comments

  • paul61
    paul61 Member Posts: 1,392 Member
    #2
    I wish the news had been better
    Linda,

    I was wondering how things were going with Ed’s radiation therapy and hoping for a positive report. It looks like that is not what we are going to have. I am so sorry to hear that.

    I can tell from the tone of your post that you are disappointed, frustrated, and tired. It has been a long difficult journey and the twists and turns are getting more difficult. I wish I could think of something bright and positive to say but at this point all I can say is that I will continue to keep you and Ed in my prayers and hope things begin to turn in a more positive direction.

    I know you are focused on taking care of Ed, but please, take time to take care of yourself and avail yourself to those around you who want to help and take care of you.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0
    12/03/2010 Ivor Lewis
    2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • hope0310
    hope0310 Member Posts: 320
    #4
    unknown said:

    This comment has been removed by the Moderator

    Confusion...
    The confusion can certainly come from the decadron being weaned incorrectly, it happened with my mom. However, it will continue to be an issue from the WBR and even get worse as time passes before it gets better (at least in most)

    The radiation my be over, but the effects are not, they did not want to rescan moms brain for 8 weeks. She had 20 tumors, all of which are either gone, or calified and no longer growing. She has no active cancer at this point (treated for SCLC w/brain and spine mets)

    Hang in there, it has surely been a tough road for you....
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #5
    Hugs to you Linda and Dianna....and even Ed!
    Hello Linda
    Thank you for your recent Ed update. I have been thinking of all of you. Sorry you did not get any better news. I have been where you are with my dad almost signing himself out of the hospital! Gee Ed, don't you think you should have given the rehab a chance? One day? Come on Man! Is there another place Ed can go for rehab that he approves of? I am totally lost for words. I will continue to pray for all of you. Peace be with you at this most difficult time. Keep in touch. Take some time for yourself this week. Go get your nails done, have a massage, get your haircut.
    Tina
  • lindadanis
    lindadanis Member Posts: 235
    #6
    Tina Blondek said:

    Hugs to you Linda and Dianna....and even Ed!
    Hello Linda
    Thank you for your recent Ed update. I have been thinking of all of you. Sorry you did not get any better news. I have been where you are with my dad almost signing himself out of the hospital! Gee Ed, don't you think you should have given the rehab a chance? One day? Come on Man! Is there another place Ed can go for rehab that he approves of? I am totally lost for words. I will continue to pray for all of you. Peace be with you at this most difficult time. Keep in touch. Take some time for yourself this week. Go get your nails done, have a massage, get your haircut.
    Tina

    thank you all for caring thoughts
    first William, I couldn't have agreed with you more, whole brain radiation is very very tough with alot of problems, more than I realized when we signed up for it, but honestly, everyone even his oncologist suggested doing it because he was having severe headaches and balancing issues when we found out about the brain met, there were no other choices except to stay on high dose decadrone which they suggested no. It has been a long long 10 months and honestly, I do not know how I have done it, it has been the hardest and most painful year of my life. I believe that the tumor is still there according to the mri, actually has grown a bit while doing radiation, hoping this will change up a bit., won't know for another month or so. Decadrone is a tough drug, I don't know if he will ever come off because he does have swelling in the brain still. I think that his oncoligst is somewhat pissed off and I cannot blame him and no, William, the place he signed out of would not fine me another rehab for him which was a big problem. He did not give it a chance now the visiting nurses have order pt/ot therapy at home. We will have alot of people coming to this house, it will be crazy. Diana and I are going out for my mom's birthday tomorrow and have a pedicure, which I am looking forward too, Ed is going over my sister's house to be watched. We cannot leave him alone for a minute, the stairs are a problem along with him just being a problem. He is still unbalanced, memory issues, mood issues, you name it, we have it here!!!!!!!!!!
    We see his oncologist next week, I am sure he will give Ed hell. thanks so much everyone for your words of wisdom and thoughts. I will keep you all updated on us. I take one day at a time, there is nothing else I can do. I pray alot and keep reminding myself that this is a terrible cancer and yes William, I do agree, you cannot blame everything on cancer.

    thanks again,

    Linda
  • Lylesmyprince
    Lylesmyprince Member Posts: 130
    #7
    unknown said:

    This comment has been removed by the Moderator

    Linda
    I'm sorry your journey with Ed has been a difficult one! It's really not fair for any of us to form oppinions about Ed...he is YOUR husband. After all,this is the man you fell in love with and we don't have any right to judge him now. We need to just love you through this and listen to you!! I just hope that at the end of your life together...you will be able to set aside any of the negative things you have had to go through once Ed received the cancer diagnosis...and live with the memories of better times. Bless you, Linda! Stay strong and take care of yourself. My heart and prayers go out for you!!

    Susie
  • lindadanis
    lindadanis Member Posts: 235
    #8
    lindadanis said:

    thank you all for caring thoughts
    first William, I couldn't have agreed with you more, whole brain radiation is very very tough with alot of problems, more than I realized when we signed up for it, but honestly, everyone even his oncologist suggested doing it because he was having severe headaches and balancing issues when we found out about the brain met, there were no other choices except to stay on high dose decadrone which they suggested no. It has been a long long 10 months and honestly, I do not know how I have done it, it has been the hardest and most painful year of my life. I believe that the tumor is still there according to the mri, actually has grown a bit while doing radiation, hoping this will change up a bit., won't know for another month or so. Decadrone is a tough drug, I don't know if he will ever come off because he does have swelling in the brain still. I think that his oncoligst is somewhat pissed off and I cannot blame him and no, William, the place he signed out of would not fine me another rehab for him which was a big problem. He did not give it a chance now the visiting nurses have order pt/ot therapy at home. We will have alot of people coming to this house, it will be crazy. Diana and I are going out for my mom's birthday tomorrow and have a pedicure, which I am looking forward too, Ed is going over my sister's house to be watched. We cannot leave him alone for a minute, the stairs are a problem along with him just being a problem. He is still unbalanced, memory issues, mood issues, you name it, we have it here!!!!!!!!!!
    We see his oncologist next week, I am sure he will give Ed hell. thanks so much everyone for your words of wisdom and thoughts. I will keep you all updated on us. I take one day at a time, there is nothing else I can do. I pray alot and keep reminding myself that this is a terrible cancer and yes William, I do agree, you cannot blame everything on cancer.

    thanks again,

    Linda

    thanks for all your posts
    Susie, I know you understand after what you have been through. Yes, he is my husband and we have been together twenty five years next week. he was a wonderful husband, a loving father and this man that we see today is not the same man., cancer does alot of terrible things to people, not only physically, but also emotionally. I pray everyday that his anger will leave him and that he will come to peace with everything that is going on with him. I want to thank all of you for posting and keeping all of us in your thoughts and prayers. I will continue to post and let you all know how we are doing. Today, Diana and I went out today and took my mom out for her 79th birthday. It was a nice day and I thank God that she is still with us also. We had a terrible scare a few weeks ago and almost lost her.

    thanks again everyone,

    Linda
  • Donna70
    Donna70 Member Posts: 852 Member
    #9
    lindadanis said:

    thanks for all your posts
    Susie, I know you understand after what you have been through. Yes, he is my husband and we have been together twenty five years next week. he was a wonderful husband, a loving father and this man that we see today is not the same man., cancer does alot of terrible things to people, not only physically, but also emotionally. I pray everyday that his anger will leave him and that he will come to peace with everything that is going on with him. I want to thank all of you for posting and keeping all of us in your thoughts and prayers. I will continue to post and let you all know how we are doing. Today, Diana and I went out today and took my mom out for her 79th birthday. It was a nice day and I thank God that she is still with us also. We had a terrible scare a few weeks ago and almost lost her.

    thanks again everyone,

    Linda

    thanks for the update
    Hi Linda,
    I have been wondering what was happening and so sad to see that there is no change in the brain after all that radiation. My prayers will continue for you, Ed and Diana that his confusion will lessen and you will have better days and more peaceful ones too. Diana and you have been remarkable and such wonderful caregivers. Ed is so lucky. Like many here, I agree that we can't judge Ed, as you said he was a wonderful father and husband and this has not been an easy journey for all of you. Prayers and long distance hugs coming your way!!
    Donna70

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