update on Ed

lindadanis
lindadanis Member Posts: 235
edited March 2014 in Esophageal Cancer #1
Well it has been a week since Ed got out of the hosptal and his decadrone was increased, he is doing better since the med change. We are having a party Saturday at our house for our 25th wedding anniversary and having some friends/family over. It has been one struggling 10 months since he was first diagnosed. I have come to the conclusion that we should not judge anyone who is diagnosed with cancer, I know that he is not the same man that he was before he was diagnosed, I try to remember the 24 years that we had together before cancer came into our lives. Ed was always a gentleman, hardworking man who took care of Diana and myself for all those years. When looking back, I remmber thinking I am marrying a man whom I am best friends and I truly feel that we were best friends for all those years and still are. He is a different man, I know this, he has had a terrible time accepting his diagnosis right from the start, he has gone through 8 rounds of chemo, 15 rounds of whole brain radiation, who would not be the same after all this???? I am going to enjoy my party Saturday, I hope Ed enjoys himself also. He is having trouble walking from day to day from the radiation, he is weak alot of the time, life has changed forever and I know this. Just thought I would share this info with all of you who has been so caring as to reply to my many posts. We are seeing his doctor tomorrow, will keep you updated

Linda

Comments

  • Donna70
    Donna70 Member Posts: 852 Member
    #2
    happy Anniversary!!
    Linda,
    Your words of support and love for Ed are beautiful. Hope Ed can enjoy the party with family and friends, 25 yrs is a big accomplishment. Hope you have a good time at the party too and hope you get some good news at the drs appt!! You are amazing and stay strong. You have not had a normal course of caregiving, this is not an easy disease to have or to be the caregiver for. There are more men with it and they are not used to being in such vulnerable positions. Hugs to you all, Diana, included. Prayers continue!!
    Donna70
  • paul61
    paul61 Member Posts: 1,392 Member
    #3
    Congratulations on your 25th!!!!!
    Linda,

    I hope both you and Ed have a wonderful time at the party. 25 years is no small accomplishment even under the best of circumstances. I know this has been a difficult journey, particularly over the last few months.

    I know when I was recovering from surgery and going through chemotherapy there were days when I was so focused on how bad I felt and how frustrated I was that I could not do even simple things I used to be able to do; I lost sight of how fortunate I was that I had a partner and caregiver to help me. There were times when I became frustrated with my wife and she became frustrated with me. But at least once a week I would wake up in the middle of the night and look at my wife sleeping next to me and thank God that she was there. Sometimes I even remembered to tell her that the next day, but not as often as I should have!!!

    I think feeling sick and helpless for an extended period of time changes all of us. During those times when we are feeling better it makes us much more humble and appreciative of the people around us. I know Ed appreciates that you are there for him. The pain, dizziness, and frustration with inability to do things gets in the way of expressing it; but I am sure it is there.

    I will be praying that you and Ed have a wonderful time at the party, and that the direction of Ed’s treatment takes a more positive direction over the next few days. Congratulations on your 25th !!!!

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0
    12/03/2009 Ivor Lewis
    2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED
  • lindadanis
    lindadanis Member Posts: 235
    #4
    paul61 said:

    Congratulations on your 25th!!!!!
    Linda,

    I hope both you and Ed have a wonderful time at the party. 25 years is no small accomplishment even under the best of circumstances. I know this has been a difficult journey, particularly over the last few months.

    I know when I was recovering from surgery and going through chemotherapy there were days when I was so focused on how bad I felt and how frustrated I was that I could not do even simple things I used to be able to do; I lost sight of how fortunate I was that I had a partner and caregiver to help me. There were times when I became frustrated with my wife and she became frustrated with me. But at least once a week I would wake up in the middle of the night and look at my wife sleeping next to me and thank God that she was there. Sometimes I even remembered to tell her that the next day, but not as often as I should have!!!

    I think feeling sick and helpless for an extended period of time changes all of us. During those times when we are feeling better it makes us much more humble and appreciative of the people around us. I know Ed appreciates that you are there for him. The pain, dizziness, and frustration with inability to do things gets in the way of expressing it; but I am sure it is there.

    I will be praying that you and Ed have a wonderful time at the party, and that the direction of Ed’s treatment takes a more positive direction over the next few days. Congratulations on your 25th !!!!

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0
    12/03/2009 Ivor Lewis
    2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    thanks!!!!!
    We saw ed's doctor today, he has bad thrush in his mouth from the decadrone and he thinks all ed's neuropathy in his hands and feet are from that drug also. Ed needed fluids today, more tomorrow because he never never drinks enough and had some blood pressure issues. Doctor today said "he looks like crap" and doesn't want to reoffer him chemo at this time. I think radiation did ed in, 15 sessions of whole brain radiation is not fun and ed is still recovering from that. I do not believe that chemo would be a good thing right now and I agree that we should just sit and wait things out for a while, hopefully he will get stronger.
    Thanks for the well wishes on our anniversary and yes, I am hoping that we both along with our daughter, enjoy saturday's party. We have had no good days in this house since last october, want to just enjoy the day and not hear the word "cancer"

    thanks again to all.
    will keep you updated, we see the doctor again tomorrow.

    Linda
  • Unknown
    Unknown
    #5
    lindadanis said:

    thanks!!!!!
    We saw ed's doctor today, he has bad thrush in his mouth from the decadrone and he thinks all ed's neuropathy in his hands and feet are from that drug also. Ed needed fluids today, more tomorrow because he never never drinks enough and had some blood pressure issues. Doctor today said "he looks like crap" and doesn't want to reoffer him chemo at this time. I think radiation did ed in, 15 sessions of whole brain radiation is not fun and ed is still recovering from that. I do not believe that chemo would be a good thing right now and I agree that we should just sit and wait things out for a while, hopefully he will get stronger.
    Thanks for the well wishes on our anniversary and yes, I am hoping that we both along with our daughter, enjoy saturday's party. We have had no good days in this house since last october, want to just enjoy the day and not hear the word "cancer"

    thanks again to all.
    will keep you updated, we see the doctor again tomorrow.

    Linda

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

    This comment has been removed by the Moderator

    I'm afraid!!!!
    Hi William, I'm afraid of what you have to say!!!! I don't know if that's a good thing or a bad thing????? Yes, I am also praying that we have a good day tomorrow. We have not had a good day in almost a year!!!! I'm sure you understand that sentence hah?
    Just family and a few friends, Like I said in my post, I am trying to remember my husband before last October, when we had a life. This past year seems like a horror movie in my mind, I keep going over and over it, night after night, and it just seems all the same to me.
    Ed's doctor is a little mad, cannot say I blame him, Ed has been quite the challenge for this poor oncologist!!!
    Cannot wait to hear from you again Wiliam.

    Linda
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #7
    lindadanis said:

    I'm afraid!!!!
    Hi William, I'm afraid of what you have to say!!!! I don't know if that's a good thing or a bad thing????? Yes, I am also praying that we have a good day tomorrow. We have not had a good day in almost a year!!!! I'm sure you understand that sentence hah?
    Just family and a few friends, Like I said in my post, I am trying to remember my husband before last October, when we had a life. This past year seems like a horror movie in my mind, I keep going over and over it, night after night, and it just seems all the same to me.
    Ed's doctor is a little mad, cannot say I blame him, Ed has been quite the challenge for this poor oncologist!!!
    Cannot wait to hear from you again Wiliam.

    Linda

    Happy 25th!
    Hi Linda and Ed
    Glad to hear Ed is doing a little better since the med change. You all have a wonderful time at your party! Live for today. God bless you and may he bring you 25 more years together!
    Tina
  • crystalbay
    crystalbay Member Posts: 38
    #8
    Do not judge.........
    I couldn't agree with you more, Linda. My own experience with cancer has shown me that when nausea grips me, I am NOT the person I really am. I get quiet, irritable, still, and don't want to interact with anyone. It's as though my very spirit has been drained from my body and all that's left is a mere shadow or physical representation of the former me. I can't imagine how difficult this is on care-givers!!! I have no one to perform this role, which is why I've been forced to spend two months in skilled or semi-skilled care. Your husband is so blessed to have you. Imagine where he'd be without you?

    Hang in there - you're an angel right here on earth!

    Nancy
  • Lylesmyprince
    Lylesmyprince Member Posts: 130
    #9
    crystalbay said:

    Do not judge.........
    I couldn't agree with you more, Linda. My own experience with cancer has shown me that when nausea grips me, I am NOT the person I really am. I get quiet, irritable, still, and don't want to interact with anyone. It's as though my very spirit has been drained from my body and all that's left is a mere shadow or physical representation of the former me. I can't imagine how difficult this is on care-givers!!! I have no one to perform this role, which is why I've been forced to spend two months in skilled or semi-skilled care. Your husband is so blessed to have you. Imagine where he'd be without you?

    Hang in there - you're an angel right here on earth!

    Nancy

    I'm sooo Proud of you!!
    Linda,

    Am am so proud of you for standing up for the protection of your husband's honor when it counts. Ed was your protector in the past...and it is your turn to be his protector. For better or for worse...right? Many of us on this site say we are Christians...with that comes love, support, prayers, and understanding...I hope we are people who you can lean on during difficult times and not the ones who cause you to fall. Love your husband with all that you have for however long you have him to love. Stay strong, Linda...this is a difficult road...but you can do it!!

    Susie
  • lindadanis
    lindadanis Member Posts: 235
    #10
    Lylesmyprince said:

    I'm sooo Proud of you!!
    Linda,

    Am am so proud of you for standing up for the protection of your husband's honor when it counts. Ed was your protector in the past...and it is your turn to be his protector. For better or for worse...right? Many of us on this site say we are Christians...with that comes love, support, prayers, and understanding...I hope we are people who you can lean on during difficult times and not the ones who cause you to fall. Love your husband with all that you have for however long you have him to love. Stay strong, Linda...this is a difficult road...but you can do it!!

    Susie

    thanks Susie
    Thanks Susie for your wonderful comments, yes, he is my husband, good or bad, and I need to do the right thing, someday I have to look in the mirror and know deep in my heart that I was a good wife no matter what. I am not saying that Ed has not been difficult, yes he has, but I do wonder if that brain tumor was there for sometime since he would never have a scan before a month ago when he was having problems. I think of you often, about Lyle and how difficult is must be for you. You, too, were a wonderful wife and I admire you for all you did for him. Life throws us curveballs, we just have to take them as they come and do what is best. We had our 25th anniversary party this past weekend, it went off well, ed almost ended up back in the hospital the day before, he is having some severe blood pressure problems that he doctor is trying to figure out. Not sure what is going on, they increased his b/p med's, increased his decardrone for swelling of the brain and we see him this thursday to see if it did anything. everyday is another day, another problem, on top of this, my poor mom has end stage copd, congestive heart issues, etc., etc., so I have a full plate going all the time. I believe that I have received quite a bit of understanding on this network and I appreciate all of it. If you would ever like to email me privately, please let me know Susie ok. I think you are my hero, I admire you so much.

    thanks for writing,

    Linda
  • paul61
    paul61 Member Posts: 1,392 Member
    #11
    lindadanis said:

    thanks Susie
    Thanks Susie for your wonderful comments, yes, he is my husband, good or bad, and I need to do the right thing, someday I have to look in the mirror and know deep in my heart that I was a good wife no matter what. I am not saying that Ed has not been difficult, yes he has, but I do wonder if that brain tumor was there for sometime since he would never have a scan before a month ago when he was having problems. I think of you often, about Lyle and how difficult is must be for you. You, too, were a wonderful wife and I admire you for all you did for him. Life throws us curveballs, we just have to take them as they come and do what is best. We had our 25th anniversary party this past weekend, it went off well, ed almost ended up back in the hospital the day before, he is having some severe blood pressure problems that he doctor is trying to figure out. Not sure what is going on, they increased his b/p med's, increased his decardrone for swelling of the brain and we see him this thursday to see if it did anything. everyday is another day, another problem, on top of this, my poor mom has end stage copd, congestive heart issues, etc., etc., so I have a full plate going all the time. I believe that I have received quite a bit of understanding on this network and I appreciate all of it. If you would ever like to email me privately, please let me know Susie ok. I think you are my hero, I admire you so much.

    thanks for writing,

    Linda

    Great to hear the party went well
    Linda,

    I have been thinking about you and Ed this past weekend. I am glad to hear the party went well. You both deserve some positive time.

    I am sorry to hear about your Mom.

    I hope you and Ed get some better answers from the doctors on your next visit. I had lots of blood pressure problems when I was on chemotherapy but they seemed to resolve after I finished. I learned to do my own checking on drug interactions. One of the medications my oncologist gave me for diarrhea interacted with the medication my primary care physician prescribed for blood pressure and my blood pressure became abnormally low. They couldn’t figure out what was going on until I happened to refill both of them on the same day and the druggist pointed it out to us. So I learned my lesson and started checking drug interactions on my own. If Ed has been given some new meds in combination with his existing medications it might be worth checking out.

    I will be praying that things get better for Ed.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 – Stage IIB
    12/03/2009 Ivor Lewis
    2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED
  • Lylesmyprince
    Lylesmyprince Member Posts: 130
    #12
    lindadanis said:

    thanks Susie
    Thanks Susie for your wonderful comments, yes, he is my husband, good or bad, and I need to do the right thing, someday I have to look in the mirror and know deep in my heart that I was a good wife no matter what. I am not saying that Ed has not been difficult, yes he has, but I do wonder if that brain tumor was there for sometime since he would never have a scan before a month ago when he was having problems. I think of you often, about Lyle and how difficult is must be for you. You, too, were a wonderful wife and I admire you for all you did for him. Life throws us curveballs, we just have to take them as they come and do what is best. We had our 25th anniversary party this past weekend, it went off well, ed almost ended up back in the hospital the day before, he is having some severe blood pressure problems that he doctor is trying to figure out. Not sure what is going on, they increased his b/p med's, increased his decardrone for swelling of the brain and we see him this thursday to see if it did anything. everyday is another day, another problem, on top of this, my poor mom has end stage copd, congestive heart issues, etc., etc., so I have a full plate going all the time. I believe that I have received quite a bit of understanding on this network and I appreciate all of it. If you would ever like to email me privately, please let me know Susie ok. I think you are my hero, I admire you so much.

    thanks for writing,

    Linda

    Thanks, Linda
    Praying for you for tomorrow at the doctors. May you have what you need to endure the journey.

    You are right that you have to live with yourself after this journey is over. I just want you to know that there is guilt as a part of grief...we just need to handle this side of the journey the best and most honest way we can so that we can endure the other side. In some ways this side of the journey is more difficult because we face it without the person we love so deeply. I think many of us would take the struggle WITH our loved one than the quietness on the other side.

    You are on my heart and my mind...

    Susie

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