This just stinks

Wpturner05
Wpturner05 Member Posts: 114
in Esophageal Cancer #1
I have been on here almost daily - just reading. Today, I feel compelled to write. I just sent my two children to 2nd grade and 6th grade not knowing what this year will hold for them. It makes me very emotional. I could not help but feel worried that my husband will not see them get on the bus their last day of school . . . . I could be wrong, I hope I am.
My husband has stage IVb. He has been on chemo since November and is now taking a break - physician ordered. A little more background . . . . He was initially stage T3N1Mo in November - had chemo and radiation in prep for surgery - liver mets were found 2 weeks prior to scheduled surgery. Obviously he is not having surgery. His oncologist continued chemo in an effort to achieve remission. He also had SIR-spheres infused on 8/3/11. His quality of life has been crap since the beginning of August. He was supposed to have chemo on 8/22, but his oncologist cancelled it for 2 reasons - blodd counts and another lymph node showed up on PET. No remission AND he is miserable. He is exhausted, nausea is daily, bloating, hiccups, loss of appetite. He does still make himself eat, but has no activity tolerance. Is this living? Is this what you do when you are 37, have two school age children, a wife and, previously, your whole life ahead of you? I know there is about a 2% chance of some survival, but at what expense? If a person is miserable every day, exhausted and battling what is that for? I don't want my kids to remember him so grumpy, sick and exhausted. What to do? . .
I guess it is not my choice what he does, I am not sure I could tell him either way. I just hate where we are and I hate where we could be going.

Thanks for listening . . .

Comments

  • topaz1947
    topaz1947 Member Posts: 24
    #2
    stinks
    I am fairly new to this experience and this site. Had never even heard of this cancer before being diagnosed. I don't have any answers for you but I can tell you that we are all here to listen. There are others who have more answers with more knowledge. You are right about not being able to tell him how to handle this, he will have to decide when he has had enough.. I pray for our caregivers every day, without them we would be lost. Anyway we are here to listen, so anytime you want to rant just come to us.. It is not as good as yelling but if you can't go do that then come here and talk. We are here for you a nd yours. God bless. Barbara
  • Daisylin
    Daisylin Member Posts: 365
    #3
    It does stink.
    Hi, you are so right, this cancer does stink, big time! I am so sorry to hear your story, especially sorry for the ivb diagnoses. My husband Lee has the same, EC with mets to the liver, and nodes. You can read more about us on my about me page, so I won't go into too much detail here.

    We seem to be in a similar situation, what to do????? Lee is scheduled for more chemo this Thursday, after having interrupted his last cycle to have a feeding tube placed. He is terrified about what the chemo will do to him, do you face the side effects with that small hope for extended life or do you just try to make the most of what time you have left? We have been going over this for months now, and there are no easy answers. There are people here who have chemo'd themselves to death, and others who have decided 'no chemo for me' and some who have made a compromise of having small amounts of chemo. The results? Some good, some bad, some miraculous, some tragic. There is no magic formula, everyone handles it differently and has different levels of success.

    The misery part, I am well aware of. We were told that palliative chemo for stage ivb was to enhance quality of life, but like your husband, we've not really seen a great deal of good days. Some days have been pretty good, but the bad ones seem often to outnumber the good ones. It is so sad to watch them suffer, and not a darn thing we can do to help. I truly feel for you, and especially with 2 young children in the house, that must make it just that much harder to cope.

    I don't think I've been able to give you any answers, but please know, this site is wonderful, with great people with years of experience and advice. Even if you have no questions, please feel free to vent, complain, whine or cry on our shoulders.

    Take care,
    Chantal
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #4
    I Agree
    Hello and welcome to you and your husband. I was a caregiver for my dad. He passed from EC with mets to the liver in March 2010. In the same boat, basically. It does stink. Cancer stinks! I have been where you are. Go with your gut feelings. My dad was the same exact way...miserable...no quality of life. We said to ourselves....is the quanity of years we are making him do worth the quality of his life? We found the answer to be...NO! You will both know when enough is enough. Listen to your husband, give him your blessing, let the decisions be his own. Stay as positive and strong as you can. I always think of my dad this way...I know he is better off now, then he was here on earth!! May God bless you all and give you the strength to carry on. Keep in touch.
    Tina in Va
  • fredswilma
    fredswilma Member Posts: 185
    #5
    Hi
    I am so sorry that you
    Hi
    I am so sorry that you have come to this site, I understand how you must be feeling, my husband is also ivb, with mets to the lungs and lymph node involvement, he is 45 years young and we have 3 school age children at home so I can understand your worry, there is no right or wrong answer and no two people will handle the chemo regime the same. We had the big guns before Christmas which was really tough going but this did allow my hubby some breathing space at the beginning of this year, we are now going through another round of Chemo not quite so taxing as previous but still tough going, when is the time to decide no more, I think that is a really individual choice, we have agreed to this round only on the assumption that if it gets to much, i.e. quality of life becomes too compromised, that we can stop. I too worry about the mood swings and what effect that will have on the kids, sometimes it feels like we are walking on egg shells. I back Mark in all decisions, we can discuss the various options however it is his decision as to how much he is prepared to commit to. I think being a caregiver is incredibly tough, you tend to take on the roll of nurse and general worrier, but the biggest thing for me is knowing that it is only palliative care, that nothing bar a miracle is going to cure this, so as a beautiful song says I'm going to love you through this and thats all I can do. Thinking of you, there are some amazing people on this site who will come on and give you really good advice and just listen when you need to rant, your allowed to do that here.
    Stay strong
    Ann
  • chemosmoker
    chemosmoker Member Posts: 501
    #6
    In the right place!
    Hello and welcome to our little hell on earth!
    We are all here to help each other, just like you are helping your husband, we are all here care-taking each other through posts, advice, and sometimes just the need to rant and vent, which is VERY therapeutic I can attest to that!
    I am also stage IVb, I am 43 and I am married with children. You can click on our pictures and read out "About Me" pages to see more about each of our journeys. We all have a LOT in common, but especially the fact that there is no way OUT of this one.
    And THAT sucks.
    I like your choice of words there.
    I have chosen NO chemo, a VERY VERY personal and hard choice that I made ALL by myself, after a LOT of research and prayer, as I would never want ANYONE to have the guilt of that kind of decision over their head, especially someone as wonderful as my beautiful wife. It pains me to no end to know what she must be going through to stand by and watch all of our dreams and plans drop away as I try to eat, keep weight on, and not vomit. THIS is NOT what she signed up for, heck I didn't sign up for this either, but I can't walk away. I am eternally grateful that she HASN'T, but I do offer the choice, and THAT is something that I learned from another member HERE on this board. I learn something useful here every day, and some days it's such a relief to just read others trouble, and get out of myself trying to help.
    Also, check out the CAREGIVERS and EMOTIONAL SUPPORT discussion boards that are located on the bottom of the list after the cancers. There is some great support there for YOU as a care-giver! I hope something helps. We are always here for you. I am often on at 2 or 3 am. Please, come back and post more!
    -Eric
  • nancyann3
    nancyann3 Member Posts: 173 Member
    #7
    chemosmoker said:

    In the right place!
    Hello and welcome to our little hell on earth!
    We are all here to help each other, just like you are helping your husband, we are all here care-taking each other through posts, advice, and sometimes just the need to rant and vent, which is VERY therapeutic I can attest to that!
    I am also stage IVb, I am 43 and I am married with children. You can click on our pictures and read out "About Me" pages to see more about each of our journeys. We all have a LOT in common, but especially the fact that there is no way OUT of this one.
    And THAT sucks.
    I like your choice of words there.
    I have chosen NO chemo, a VERY VERY personal and hard choice that I made ALL by myself, after a LOT of research and prayer, as I would never want ANYONE to have the guilt of that kind of decision over their head, especially someone as wonderful as my beautiful wife. It pains me to no end to know what she must be going through to stand by and watch all of our dreams and plans drop away as I try to eat, keep weight on, and not vomit. THIS is NOT what she signed up for, heck I didn't sign up for this either, but I can't walk away. I am eternally grateful that she HASN'T, but I do offer the choice, and THAT is something that I learned from another member HERE on this board. I learn something useful here every day, and some days it's such a relief to just read others trouble, and get out of myself trying to help.
    Also, check out the CAREGIVERS and EMOTIONAL SUPPORT discussion boards that are located on the bottom of the list after the cancers. There is some great support there for YOU as a care-giver! I hope something helps. We are always here for you. I am often on at 2 or 3 am. Please, come back and post more!
    -Eric

    Hello
    I just lost my hubby on Aug.14th. We have two school age children also. 13 and 15. We walked a 18 month battle, including chemo rad and the surgery. Thought we had it beat until 3 month post op scan. We went from what we thought was the cure, to gone in 6 months. No way around it..........this stuff stinks! Its not fair to any of us.

    My hubby decided no more treatment himself. Physically I dont think he could have handled it anyway.

    I wish I had some answers for you, but I'm still looking myself. I guess the best answer I can find right now is this site and each other. We are here for each other and have a common bond that only "we" can understand. Take each day, one at a time and love each other through it.

    Take care
    Nancy
  • Joel C
    Joel C Member Posts: 174
    #8
    nancyann3 said:

    Hello
    I just lost my hubby on Aug.14th. We have two school age children also. 13 and 15. We walked a 18 month battle, including chemo rad and the surgery. Thought we had it beat until 3 month post op scan. We went from what we thought was the cure, to gone in 6 months. No way around it..........this stuff stinks! Its not fair to any of us.

    My hubby decided no more treatment himself. Physically I dont think he could have handled it anyway.

    I wish I had some answers for you, but I'm still looking myself. I guess the best answer I can find right now is this site and each other. We are here for each other and have a common bond that only "we" can understand. Take each day, one at a time and love each other through it.

    Take care
    Nancy

    Doesn’t just stick it sucks!
    Wpturner05 I’m very sorry to read your story and the fact that you have such young children makes it so much harder. It’s true this cancer is brutal for all involved there in no way to deny that. There is no right or wrong answer in regard to continued treatment for a stage IVb EC cancer patient. I admire the mindset that Eric (chemosmoker) has adopted and pray if and when the time comes I can be as gracious. Like you I don’t want my wife and children to remember me as being sick and miserable. Tammy and I try to celebrate the good times when we can but I never forget what may be around the corner. People living with things going well cannot possibly know what a family dealing with cancer is going thru. I have friends and family that check on us all the time and are hoping and praying for the best but they only live with cancer for a few minutes and then it’s back to a normal life. The fact that there is no escape is an additional load draining energy every day.

    I think back to just 14 months ago and how good we had it, beautiful wife I love very much, two children in college and doing well, great job, living in our dream home and just very happy. Then wham EC at 49 years old and it all changed. The truth is I still have all the things I mentioned but the weight of EC is crushing us. For me the most difficult part is worrying what will happen to wife and children in the future. I’ve been on this planet long enough to realize life goes on and it should but I keep coming back to my wife and I were suppose to grow old together. Tammy is a beautiful 47 year old woman that may still have half her life in front of her. I want her to go on and enjoy her life if anything happens to me but I can’t tell you the pain I feel with the thought of that possibility.

    You and your family are in my prayers,
    Joel
  • Wpturner05
    Wpturner05 Member Posts: 114
    #9
    Thank you to all of you for
    Thank you to all of you for your comments. Much appreciated , , , It is so good to be where people truly get it . . . All of it. Thanks
  • jax568
    jax568 Member Posts: 57
    #10
    Wpturner05 said:

    Thank you to all of you for
    Thank you to all of you for your comments. Much appreciated , , , It is so good to be where people truly get it . . . All of it. Thanks

    agreed this more than sucks!!!!!!!!!
    My girls are starting 3rd and 6th grade. Having to watch your strong father go through this just doesn't seem fair. I sometimes wonder would it be better to get hit by a bus. Is there something to be said for saying goodbye?

    Sorry but I am feeling a little angry right now.
  • TerryV
    TerryV Member Posts: 887
    #11
    jax568 said:

    agreed this more than sucks!!!!!!!!!
    My girls are starting 3rd and 6th grade. Having to watch your strong father go through this just doesn't seem fair. I sometimes wonder would it be better to get hit by a bus. Is there something to be said for saying goodbye?

    Sorry but I am feeling a little angry right now.

    Jax - I relate
    My husband and I share my two children, 4th & 6th grade. My children came with me from a divorce 6 years ago. They lost their blood father at age 49 2 years back to MRSA complications from a heart valve surgery. How can it be fair for them to go through EC now with the man my 6th grader calls "Daddio"?

    There is nothing fair about this beast. It's agressive, it's indiscriminate, it takes down good people and tortures both body and brain. I know as an involved caregiver, I've felt mental anguish and pain beyond anything I believed was possible.

    Stay strong, lean on the people here in the forum. We all understand and are traveling the same journey with you. We share your frustration, your anger, and your hope.

    Prayers to all traveling the EC path. Special thoughts, prayers, and energy to those traveling the Stage 4b path.

    Terry
    wife to Nick, Stage 3

Discussion Boards