Update on Larry

LauraandLarry

Up and down. I wrote a long rant, then deleted it. I am beyond frustrated with my husband. Mixed emotions. I love him so very dearly. Have so much admiration for him and his battle, yet am so discouraged that he just will not follow orders from the medical staff. Which affects me everyday. I am exhausted. Drs are concerned that he may have EC lurking in his chest cavity. They ordered a CT for tomorrow stat. This I know is not his fault at all. But to watch him everyday push his way through every restriction is getting to be unbearable. So many of the ramifications fall into my lap as well. He will overeat to the point of not being able to swallow his own saliva. Which is terrifying to watch. He is already mowing the lawn, carrying heavy objects, climbing ladders etc, only for me to have to rush and sit by him on the lawn where he lands. Just as he was through chemo. Dr says he is not even ready for pulmonary rehab due to clots in lung, but is doing all of these things. He starts huge projects that he cant finish, and who gets to finish them??? He is steadily losing weight, because he eats so much food from the "shouldn't list" he has dumping at least twice a day. But complains all evening that he should be getting better by now. Hopefully tomorrow's test comes back negative, I want more than anything for Larry to win this battle, but I don't believe that he can if he doesn't give it 100% and more. He has his own way of thinking, and believes he can push his way through. He believes that giving it time is just wrong. Ugh

Christine135

Hang in

It is hard to watch the ones we love not follow directions when they are well it is even more frustrating when they are sick. The only suggestion I can give you is to let him deal with this in his way even though you may not agree with it.  When my husband has his moments and I am his target, I say nothing but let him vent. I find the more I try to push him to do what I want him to do the more he rebels like a teenager. I have come to not take his words or actions personally as I know he is fighting not only the cancer but he is fighting the fact he will never be cured, that chemo is just a hope of having more time with us but that his quality of life is going down. Being his wife and caregiver, I am the closest person he has to lash out at and I have come to accept this is part of the territory of feeling like crap all the time but feeling the need to be normal. When he falls all you can do is sit with him and help as I do my husband when he over does it but I say nothing to him. I just sit and wait for him to want to move and then I help him up. I too am finishing projects but I have come to not dwell on them..they will get done when I get to them so I no longer stress over things. 

Mike said the same things as Larry has said..I should be getting better but reality is he isn't and that is hard as a man to face he will be leaving his family behind someday. Giving up is hard for men to do..it is not in their DNA to give up or admit they have been defeated. Hang in there and take it one day at a time. That is all one can do given the circumstances we are facing and I know all too well how hard this is on you. It kills me to see the man I love and admire in so much pain and that he will lose this battle but I have to also be realistic. All I can do is just love my husband no matter what his mood and let him do what he needs to do in order to deal with the cards he has been handed.

Prayers with you and Larry always and stay in touch. God bless you both.

Christine 

RKMikulski

Christine135 said:

Hang in

It is hard to watch the ones we love not follow directions when they are well it is even more frustrating when they are sick. The only suggestion I can give you is to let him deal with this in his way even though you may not agree with it.  When my husband has his moments and I am his target, I say nothing but let him vent. I find the more I try to push him to do what I want him to do the more he rebels like a teenager. I have come to not take his words or actions personally as I know he is fighting not only the cancer but he is fighting the fact he will never be cured, that chemo is just a hope of having more time with us but that his quality of life is going down. Being his wife and caregiver, I am the closest person he has to lash out at and I have come to accept this is part of the territory of feeling like crap all the time but feeling the need to be normal. When he falls all you can do is sit with him and help as I do my husband when he over does it but I say nothing to him. I just sit and wait for him to want to move and then I help him up. I too am finishing projects but I have come to not dwell on them..they will get done when I get to them so I no longer stress over things. 

Mike said the same things as Larry has said..I should be getting better but reality is he isn't and that is hard as a man to face he will be leaving his family behind someday. Giving up is hard for men to do..it is not in their DNA to give up or admit they have been defeated. Hang in there and take it one day at a time. That is all one can do given the circumstances we are facing and I know all too well how hard this is on you. It kills me to see the man I love and admire in so much pain and that he will lose this battle but I have to also be realistic. All I can do is just love my husband no matter what his mood and let him do what he needs to do in order to deal with the cards he has been handed.

Prayers with you and Larry always and stay in touch. God bless you both.

Christine 

Must be something in the air.

Must be something in the air. My husband made me buy him a doughnut today. He had to finish it in the bathroom. I use to feel bad for him but when you make poor choices about what your eating then I have no sympathy for you. I am praying for a clean scan for Larry, please keep us updated. 

callerid

Scan

No one really tells you the emotional side of all this. Although my husband couldn't have the surgery, I always sensed those who could were so optimistic about the outcome...never realizing the hard work and emotional toil it takes on the patient (and the caretaker.)

Try to remember there have been many success stories. 

Take care Laura. I hope you are finding time to do something just for yourself that doesn't pertain to the illness.

 

 

eternalife

callerid said:

Scan

No one really tells you the emotional side of all this. Although my husband couldn't have the surgery, I always sensed those who could were so optimistic about the outcome...never realizing the hard work and emotional toil it takes on the patient (and the caretaker.)

Try to remember there have been many success stories. 

Take care Laura. I hope you are finding time to do something just for yourself that doesn't pertain to the illness.

 

 

Being the punching bag is no fun

Hello ladies and cargivers, the other job..

I am fairly new to this site, more active on CC, however I can relate, my husband was diagnosed with stage iv EC in Dec 2011, We have been cancer warriors for well over a year and it's exhausting.. up one road down another. He's off today for chemo/ radiation.. one more treatment plan, if that fail we can do another round of chemo. I am not sure he'll want to keep fighting. He is getting increasingly frail, still strong willed , though.. continues to eat not all the good foods .

As a caregiver, there are many days , I just want to cry.. but know that the journey is not over and I have to keep up my strengh plus stay positive, although EC has very poor outcomes.. we all have to be realistic.. this is a bad type of cancer and the suffering and GI struggle, I wouldnlt wish on a dog... never my husband of 33 years.. yes we have been married a long time and it's so hard to see him this way as we were preparing for retirement and fun things, travel, etc. .Cancer has changed it all, and I realize you're singing the same tune, I won't go on, could a , should a , doesn't make sense at this point.

Best ,

Be the light to the world, as Pope John Paul11 said... we are the salt of the earth.

WifeOfSurvivor2Be

Hardest thing I have ever done

Laura,

Your feelings and frustration are valid and justified.  This has been so very hard on my marriage as well.  Being a caretaker is the worst!  You worry all the time and then when they look better you still worry about when the next bout of crap will come at you.  I have tried to stay positive but it just can't be all the time.

My husband, rightfully, gets frustrated with me because I treat him like a child.  Checking what he ate, what his temp it, what his weight is.....  I try to keep this in check but I just can't help it.   

We worry, we want them back, we want them well.  

Please make sure you are talking to someone outside of family and friends.  You need someone who can help you cope....which is everybit as important as helping Larry cope.

Your comment on the EC lurking scares me.  Didn't all of his pathology reports come back excellent?  Makes me concerned about the accuracy of these reports.  He is only a few months out from surgery.

Good thoughts sent your way!

Amy

JKGulliver

There With You

I, too, know exactly what you mean as I struggle daily to keep my husband on a healthy routine including diet, exercise and sleep.  Patients go through six psychological stages:  shock, denial, anger, bargaining, depression, acceptance.  I have read that human beings cannot skip any of these stages.  As caregivers, we just have to let our loved ones go through them at our own pace.  We are going through them, too.  But, we linger or move on from the stages at a different pace, and I've read that it is not uncommon to revert back to a previous stages many times in the process. 

As others have said, this is so, so very hard.  We have to give our loved ones the support, nursing and love they need, at the same time dealing with their rejection.  Their denial, answer, bargaining and depression is what we deal with on a daily basis, hour by hour.  Write us often, Laura.  We are with you in spirit and thought.

Dad'sfight

I can't believe that I read
I can't believe that I read they think he has EC lurking in the chest cavity. It literally stopped me from doing what I was doing so that I could sit down. I will continue to pray for both of you, in hopes that its not cancer. That's my biggest fear with my father. I agree with the post about cancer patients going through different stages, I've seen that in dad too. His mood has definently changed, and the cancer commercials aren't helping either.

nanob1023

I totally agree

after reading everyones posts im sitting here in tears.My husband was diagnosed in March of this year.stage 4 a few small spots on hip and a small spot on rib.We have done the chemo and radiation and are on a few weeks break from it all.Im trying to just enjoy this time.He has set up the pool and tried to golf but ended injuring his muscle in his shouldar blade area.He knows he's very weak and is trying to build up his strength with protein .I still work and cant be here all day Im gone from 9-3.I tell him to make sure he eats and hes does pretty well.He is able to get alot more down than before so he feels pretty good about that.We have had no tubes or anything I just ground everything up so he could eat it.He did tire of milkshakes though after 4 weeks of them:) The last 2 weeks of chemo were hard and food started to taste bad.some food still does and coffee tastes terrible to him.hes trying tea these days.We have been told no surgery cuz of it mestasizing.I just want to know if there is hope at all I know it wont be cured but will it all be gloom and doom like I read here.Its been very hard alot of pain since he has no voice either.I havent seen anyone talk about that! just wish there was someone who would say his voice might come back.thanks for listening . Nancy wife of richard.

 

callerid

nanob1023 said:

I totally agree

after reading everyones posts im sitting here in tears.My husband was diagnosed in March of this year.stage 4 a few small spots on hip and a small spot on rib.We have done the chemo and radiation and are on a few weeks break from it all.Im trying to just enjoy this time.He has set up the pool and tried to golf but ended injuring his muscle in his shouldar blade area.He knows he's very weak and is trying to build up his strength with protein .I still work and cant be here all day Im gone from 9-3.I tell him to make sure he eats and hes does pretty well.He is able to get alot more down than before so he feels pretty good about that.We have had no tubes or anything I just ground everything up so he could eat it.He did tire of milkshakes though after 4 weeks of them:) The last 2 weeks of chemo were hard and food started to taste bad.some food still does and coffee tastes terrible to him.hes trying tea these days.We have been told no surgery cuz of it mestasizing.I just want to know if there is hope at all I know it wont be cured but will it all be gloom and doom like I read here.Its been very hard alot of pain since he has no voice either.I havent seen anyone talk about that! just wish there was someone who would say his voice might come back.thanks for listening . Nancy wife of richard.

 

Uncertainty

Uncertainty is the worst part of it all. I wish I could tell you the path that lies ahead but it is an unknown. My husband has not had any major issues yet but it has metastasized to other areas even with the chemotherapy.

Was your husband seen at one of the major cancer centers?  A second opinion is advised by most members on this board.

servman86

I read the replies to this

I read the replies to this post and my heart goes out to each of you. I was on the other side of the fence. I was the one who was sick, Stage III EC Iver-Lewis etc. I'm not proud to say it, but I too was the difficult patient. I didn't choose to be but that is what I became. I wish that I could describe the frustration of being a strong, active, hard working man, caring for your family, enjoying life and suddenly hitting the wall. The mental struggle of having to ask someone to help you get up, or to walk more than 25 feet at a time and the feeling of unworthiness that comes with this type thing can not be explained. Add to that the issue of everyone and your body, telling you all the things that you can't do. It is incredibly mentally and emotionally devastating. In defiance perhaps, we at times do act and react in an "I'll show you" manner and mentality. Understand we are not fighting you, we are not mad at you, our frustration is not with you. We are fighting this disease, we are fighting our body. we are fighting the reality that we don't know what lies ahead, and yes we are resisting the reality that we may not be here to experience all of the dreams and life moments that we always thought we would see, whether it was to walk your daughter down the aisle or to travel in your retirement we are processing the factthat this dream may not happen We Thank God for our caregivers. We don't know your struggles in that role, but know that we love you, that we need you, and we need your strength. Be patient with us, and when you need to, take break from it, get away from it if only for a couple of hours. You have that luxury ,we do not. I have survived 14 years after my diagnosis. My life was forever altered when I got sick all those years ago, but I am bblessed everyday to have a woman in my life who continues to tolerate all of the effects that this disease still has on our lives. She never complains, she never lectures, and she has never 1 time made me feel guilty about the effects that this disease has had on our lives. Again the role of caregiver is undoubtedly a thankless, diffucult, and frustrating role, in our mind we know that, and we are soooo grateful for you,but i our heart we are sad,and frustrated and humbled that we need you so desparately.

LauraandLarry

callerid said:

Uncertainty

Uncertainty is the worst part of it all. I wish I could tell you the path that lies ahead but it is an unknown. My husband has not had any major issues yet but it has metastasized to other areas even with the chemotherapy.

Was your husband seen at one of the major cancer centers?  A second opinion is advised by most members on this board.

Hello

Yes Larry has had 4 opinions, and he is being cared for by one of the top EC centers in the world. It is Larry that ultimately chooses his own plan for recovery. Thank you, and I as well would recommend everyone seek as many options as possible!

LauraandLarry

servman86 said:

I read the replies to this

I read the replies to this post and my heart goes out to each of you. I was on the other side of the fence. I was the one who was sick, Stage III EC Iver-Lewis etc. I'm not proud to say it, but I too was the difficult patient. I didn't choose to be but that is what I became. I wish that I could describe the frustration of being a strong, active, hard working man, caring for your family, enjoying life and suddenly hitting the wall. The mental struggle of having to ask someone to help you get up, or to walk more than 25 feet at a time and the feeling of unworthiness that comes with this type thing can not be explained. Add to that the issue of everyone and your body, telling you all the things that you can't do. It is incredibly mentally and emotionally devastating. In defiance perhaps, we at times do act and react in an "I'll show you" manner and mentality. Understand we are not fighting you, we are not mad at you, our frustration is not with you. We are fighting this disease, we are fighting our body. we are fighting the reality that we don't know what lies ahead, and yes we are resisting the reality that we may not be here to experience all of the dreams and life moments that we always thought we would see, whether it was to walk your daughter down the aisle or to travel in your retirement we are processing the factthat this dream may not happen We Thank God for our caregivers. We don't know your struggles in that role, but know that we love you, that we need you, and we need your strength. Be patient with us, and when you need to, take break from it, get away from it if only for a couple of hours. You have that luxury ,we do not. I have survived 14 years after my diagnosis. My life was forever altered when I got sick all those years ago, but I am bblessed everyday to have a woman in my life who continues to tolerate all of the effects that this disease still has on our lives. She never complains, she never lectures, and she has never 1 time made me feel guilty about the effects that this disease has had on our lives. Again the role of caregiver is undoubtedly a thankless, diffucult, and frustrating role, in our mind we know that, and we are soooo grateful for you,but i our heart we are sad,and frustrated and humbled that we need you so desparately.

I know...

I know deep down inside that everything you said is exactly how my husband is feeling, and I thank you so much for sharing your feelings. Again another brave soldier. I don't think I could do it. Once in a great while I will get an "I love you", once in a great while. Our home has always been the hub grid our family. 6 married children and 14 grandchildren. 7 of our grandchildren live within walking distance, and Laborite of them are elementary and preschool age. It is getting to the point where the parents are a kidding us in order to shield their children from his attitude. With summer upon us it is devasting to me to look at our empty beach almost everyday. This beast has had a domino effect on our entire family. I just wish he would realize this, but more than anything I hope he survives and wiya this battle. One day I hope we can look back and say whew!

Sloaner3

Tremendous Respect...

Although  I am new here with my sister's diagnosis, I am not new to cancer's challenges.  Our mom died only 6 months ago from lung and colon cancer.  I think that the hardest part through all of this is the lack of control. Living like this is a tremendous challenge for everyone involved.  I am very thankful that I can read the words of all of you to gain the strength necessary to be a good caregiver for my sister.  My sister and I were an amazing tag-team for my mom.