Difficult Days

linda1120
linda1120 Member Posts: 389
edited March 2014 in Esophageal Cancer #1
I must begin this by saying that I so admire all of you that are fighting this EC battle, and the caregivers/spouses/daughters/sons/friends. Our battle started September 6th with the words, "You have Barrett's disease and a malignant tumor in your esophagus." I feel like I have watched the love of my life, my husband Jim, waste away in two months time. He has completed his two months of Cisplatin and 5fu chemotherapy and 26 of 28 IMRT radiation treatments. The skin on his back is burned from the radiation and he is so weak he can hardly stand. His mouth hurts, he won't eat, won't drink, and I can occasionally get him to suck on a popsicle. For four days now all he does is sleep and occasionally will try to eat. He has had to have IV hydration three days. He was down 13 lbs a few days ago and I am sure will be down more. I feel so helpless. In the beginning I tried to push food, but have learned he can't even hear about it without feeling sick.

I pushed for a j tube a month ago but the doctors were concerned about it being in the field of the radiation. His celiac nodes are involved so the radiation field is quite large. We have special creams for his skin. I find it odd that the front of his chest has no discoloration or irritation, yet his back does.

We go to Portland to OHSU to have the EUS and see the heart doctors about his aortic valvolplasty procedure next week. Maybe they can put a j tube in while we are in Portland. I know they are planning to do so in December when surgery is scheduled.

I am just feeling so helpless and I know all of you understand. Thanks for listening.

Linda

Comments

  • sal314
    sal314 Member Posts: 599 Member
    #2
    Oh LInda, I'm So Sorry
    My heart goes out to you. I know the feeling of utter helplessness. I honestly don't know what to say, other than just keep praying and trying to remain strong for Jim.

    The not eating or drinking is terrible. Is there anyway they can give him liquid nutrition through an IV? I don't understand why doctors aren't more aggressive with the hydration and the nutrition? His body needs it to keep his body functioning and more able to fight!

    My prayers and thought are with you and Jim.

    Blessings,
    Sally
  • sandy1943
    sandy1943 Member Posts: 824
    #3
    Linda, I was fortunate to
    Linda, I was fortunate to not have the problems you mention when I went through treatment. I don't understand why the drs are not doing more to help with nutrition and hydration. We need this to give us the energy to fight this battle.I'm hoping something will be done when Jim goes to portland next week. I can understand the feeling of helplessness. As a spouse we are use to taking care of our husbands or wives, and it's hard to not be able to.
    You and Jim are in my thoughts and prayers,
    Sandra
  • paul61
    paul61 Member Posts: 1,391 Member
    #4
    I know this is difficult but it does get better
    Linda,

    I am so sorry you and your husband have to go through this. When I was getting Cisplatin, Epirubicin, and 5 FU I lost 30 pounds. My mouth hurt most of the time. My oncologist reduced the 5 FU dosage and that helped the mouth irritation slightly. He also prescribed “magic mouthwash” (this is really what they call it) and it seemed to help some as well.

    All I did was sleep, sit on the couch and watch TV, and try to eat. I had no appetite but I forced myself to eat small amounts 5 or 6 times a day. I also went in for IV hydration 3 days after each IV infusion (I got an infusion of Cisplatin and Epirubicin every 21 days).

    I know it is frightening to watch the effects of chemotherapy on a loved one. My wife was very concerned about my survival when I went though it. But, I did survive, and I began to recover my weight and energy almost immediately after the chemo finished.

    This is a very difficult time I know but things will improve once the chemo is finished.

    It sounds like your husband is close to the end of his radiation treatments; I hope he is also approaching the end of his chemotherapy.

    I will be thinking of the both of you and praying for you as you complete this difficult process.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED
  • Bobs1wife
    Bobs1wife Member Posts: 150
    #5
    Hard times
    Linda, It sounds like your husband is just like mine was close to the end of radiation. Thinking back he had so many of the issues you mentioned. He was nausiated to just think about eating, let alone doing it. He had radiation discoloring on his back, none on the front. He had lost about 50 lbs by the time he finished treatment. I really think this was such a hard part. He actually looked better following surgery than after he completed chemo/radiation. I agree about the nutrition and hydration. It is so important for strength and healing.Can you push for more? I think they can do some through IV before he gets his feeding tube put in. My husband's esophagus closed off the rest of the way during the last part of radiation, so he had to use the feeding tube that he was so annoyed about getting. He accepted it graciously after having it there when he needed it. I was also going to answer your other post about hiccups. The Thorazine made my husband too tired and out of it so he wouldn't take it. We had a wonderful chemo nurse tell us she could help with that and prescribed Baclofen. It worked wonderful, and he didn't have the sleepiness and didn't feel strange when he took it. We were just back into the lab yesterday, so I had her write down the name so I could let you know, as I couldn't remember. Keep watching out for him, you are doing a great job, and just push when your logic tells you it's right. We found things weren't always offered, but when we ask for them, they would say ok. Linda
  • LivingFaith
    LivingFaith Member Posts: 74
    #6
    Bobs1wife said:

    Hard times
    Linda, It sounds like your husband is just like mine was close to the end of radiation. Thinking back he had so many of the issues you mentioned. He was nausiated to just think about eating, let alone doing it. He had radiation discoloring on his back, none on the front. He had lost about 50 lbs by the time he finished treatment. I really think this was such a hard part. He actually looked better following surgery than after he completed chemo/radiation. I agree about the nutrition and hydration. It is so important for strength and healing.Can you push for more? I think they can do some through IV before he gets his feeding tube put in. My husband's esophagus closed off the rest of the way during the last part of radiation, so he had to use the feeding tube that he was so annoyed about getting. He accepted it graciously after having it there when he needed it. I was also going to answer your other post about hiccups. The Thorazine made my husband too tired and out of it so he wouldn't take it. We had a wonderful chemo nurse tell us she could help with that and prescribed Baclofen. It worked wonderful, and he didn't have the sleepiness and didn't feel strange when he took it. We were just back into the lab yesterday, so I had her write down the name so I could let you know, as I couldn't remember. Keep watching out for him, you are doing a great job, and just push when your logic tells you it's right. We found things weren't always offered, but when we ask for them, they would say ok. Linda

    linda
    Linda,

    I am also sorry your hubby feels so awful.

    Watching my dad get so ill is such a powerless feeling. My dad has a numbing liquid for the painful mouth and throat. I can't think what is is called right now. It is not the Magic Mouthwash, it is something else, that he swished and swallows. It has helped a ton. I also think Sherri has a recipe on here that helped her husband alot.

    I don't know how you feel about alternative type medicine but I went to the health food store and got my dad some concentrated Aloe Vera juice. He is to drink 2oz twice a day. His tastes kind of like cranberry juice and I liked it. If you read up on Aloe and from what the health food guy said, it is very helpful for the GI tract. People have put Aloe Vera on their burns on the outside of their skin for thousands of years. Drinking it soothes the "burns" in the mouth and all the way down the GI tract. He claims it helped him heal the ulcers in his stomach years ago and still drinks in everyday. Who knows?

    Please know that me and so many others here are praying for him.

    Deb
  • linda1120
    linda1120 Member Posts: 389
    #7
    LivingFaith said:

    linda
    Linda,

    I am also sorry your hubby feels so awful.

    Watching my dad get so ill is such a powerless feeling. My dad has a numbing liquid for the painful mouth and throat. I can't think what is is called right now. It is not the Magic Mouthwash, it is something else, that he swished and swallows. It has helped a ton. I also think Sherri has a recipe on here that helped her husband alot.

    I don't know how you feel about alternative type medicine but I went to the health food store and got my dad some concentrated Aloe Vera juice. He is to drink 2oz twice a day. His tastes kind of like cranberry juice and I liked it. If you read up on Aloe and from what the health food guy said, it is very helpful for the GI tract. People have put Aloe Vera on their burns on the outside of their skin for thousands of years. Drinking it soothes the "burns" in the mouth and all the way down the GI tract. He claims it helped him heal the ulcers in his stomach years ago and still drinks in everyday. Who knows?

    Please know that me and so many others here are praying for him.

    Deb

    difficult days
    Thank you for all of the comments and suggestions. Jim has the Magic Mouthwash and it doesn't
    do a lot for him. Today he could hardly walk and when we saw the doctor I told them they needed
    to hospitalize him. They agreed and he is in for a few days to get hydrated and have some glucose. He hasn't been taking any pain meds and the doctor said he needs to, so they will be doing that and that should help out as well.

    It is good to hear the stories of others and how you pulled out of the same symptoms.

    This is a aggressive disease and has to be treated aggressively.

    God Bless,

    Linda
  • linda1120
    linda1120 Member Posts: 389
    #8
    LivingFaith said:

    linda
    Linda,

    I am also sorry your hubby feels so awful.

    Watching my dad get so ill is such a powerless feeling. My dad has a numbing liquid for the painful mouth and throat. I can't think what is is called right now. It is not the Magic Mouthwash, it is something else, that he swished and swallows. It has helped a ton. I also think Sherri has a recipe on here that helped her husband alot.

    I don't know how you feel about alternative type medicine but I went to the health food store and got my dad some concentrated Aloe Vera juice. He is to drink 2oz twice a day. His tastes kind of like cranberry juice and I liked it. If you read up on Aloe and from what the health food guy said, it is very helpful for the GI tract. People have put Aloe Vera on their burns on the outside of their skin for thousands of years. Drinking it soothes the "burns" in the mouth and all the way down the GI tract. He claims it helped him heal the ulcers in his stomach years ago and still drinks in everyday. Who knows?

    Please know that me and so many others here are praying for him.

    Deb

    difficult days
    Thank you for all of the comments and suggestions. Jim has the Magic Mouthwash and it doesn't
    do a lot for him. Today he could hardly walk and when we saw the doctor I told them they needed
    to hospitalize him. They agreed and he is in for a few days to get hydrated and have some glucose. He hasn't been taking any pain meds and the doctor said he needs to, so they will be doing that and that should help out as well.

    It is good to hear the stories of others and how you pulled out of the same symptoms.

    This is a aggressive disease and has to be treated aggressively.

    God Bless,

    Linda
  • dwhite0002
    dwhite0002 Member Posts: 126
    #9
    IV nutrition
    Hi Linda,

    I am a survivor and my wife is an RN. they CAN give you total nutrition through an IV. Ask for it! It is certainly something that could sustain him for a period of time, until the radiation is over and he is able to get a j-tube.

    Don't wait...every pound is important. In fact, go in and demand that something be done...

    I will pray for you both.

    David,
    Hillsboro, OH
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #10
    dwhite0002 said:

    IV nutrition
    Hi Linda,

    I am a survivor and my wife is an RN. they CAN give you total nutrition through an IV. Ask for it! It is certainly something that could sustain him for a period of time, until the radiation is over and he is able to get a j-tube.

    Don't wait...every pound is important. In fact, go in and demand that something be done...

    I will pray for you both.

    David,
    Hillsboro, OH

    Hello Linda and Jim
    So glad
    Hello Linda and Jim
    So glad to read your second post which told us he is now in the hospital. That is the best place for him now. He will get the hydration and nutrition he desperately needs. I agree with you asking in Portland about the feeding tube again. The pain meds will also help him.
    Be careful with them though. Some of them have bad side effects. Thinking and praying for both of you! Keep in touch.
    Tina in Va

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