Rough week

cher76
cher76 Member Posts: 292
in Esophageal Cancer #1
I haven't posted in awhile as we have had a rough week dealing with chemo. Rickie went in to the doctor’s office last Monday, Aug. 29th for his usual regime of Erbitux and Irinotechan, and then returned on Tuesday morning for his sandostatin shot. He has never really suffered from nausea, but this time as soon as we got into the car he had to grab a plastic bag to spit up into. He had been taking Zofran, but it just didn’t seem to help at all. From there things just seemed to get worse. He has rarely complained in the 11 months we have been on this journey, so I knew it had to be really bad when he complained of a terrible headache and nausea. He never really threw up just lots of mouth watering and total lack of appetite. He had insisted on going out for a walk in the 110 degree heat, and I think that began his hydration problems. By Wednesday evening I was quite concerned as I could tell that he was dehydrated and just refused to take much in. I wanted to take him to the doctors for hydration on Thursday, fearing the coming holiday weekend, but he refused to go. I know he was afraid that if he went the doctor would want him to go into the hospital and he did not want to do that. I was so worried that he was shutting down; I got little sleep that night or the next. Friday morning came and I told him I would play it his way only if he would hook up to his feeding pump and take in as much as he could all day. We tried to get in more than three cans, but the formula he is on is just so rich that he says it fills him up too much. Finally on Saturday I got him to drink some vitamin water, and beef broth, as well as water and a couple of ensures. It’s such a scary thing. Each night I told him, tomorrow will be a better day and he agreed. Monday he was feeling better, and yesterday he had a doctor’s appointment, where he received hydration, which perked him up considerably. We discussed with the doctor the fact that the Zofran did little for him and he suggested that he try using phenergan gel for the nausea. We also discussed the fact that maybe the dosage of the chemo should come down a little as since it was prescribed in March he has lost 50 more pounds. He agreed that that probably was a good idea. I did read a few of the posts during the week, mainly the ones dealing with the stopping of chemo. I have never really commented on those because that is not the direction Rickie has chosen to take. We have discussed the fact that chemo would probably be with us until he decides no more, and that it is his decision to make and I have given him my blessings to do what he feels is right for him. He knows that I will be right there beside him every step of the way. Since we have had good results with the chemo; the cancer has shrunk from encompassing almost the total length of the esophagus (20 cm) to being just at the GE junction and 4 cm into the stomach, the bone mets have supposedly resolved, and at this time no other organs are involved; he feels that it is worth it. He is a very strong willed man, and is determined to continue to fight this. I am just hoping next time he will go in for hydration before it gets so bad. Hopefully today will be a better day as well.
Cheryl
Wife of Rickie Stage IV EC dx Oct. 2010

Comments

  • TerryV
    TerryV Member Posts: 887
    #2
    Oh, Cheryl
    You've got our shoulders to support you whenever you need. That was a truly difficult week for you both.

    I recall being told that Nick could use his Jtube for hydration if needed, but we never have. Perhaps you could talk with a doctor or nutrionist to confirm, but it would make sense to be able to use it in that fashion.

    Thoughts and prayers to you and Rickie!

    Terry
    Wife of Nick, Stage 3
  • chrissiebass
    chrissiebass Member Posts: 56
    #3
    keepin you both close to my heart
    I haven't been writing on here either, but since I joined, I read this board 2x a day, and there are a few people here and I look to see if they have recently posted anything, and you are one!! I keep you both so close to my heart because you two remind me of my mom and dad! I hope today, tommorrow is better for both of you, and know even when I don't respond to your posts, I always read them and keep you guys and so many others in my prayers!!

    chrissie
    daughter of stage lV
  • jojoshort
    jojoshort Member Posts: 230 Member
    #4
    Hi Cheryl
    Your post brought up so many thoughts about how hard it is to be a caregiver. Hydration is so important, and I hope your Rickie now understands that it's not something to put off. I am hopeful reading how well he has responded to the chemo. May you both find strength in the coming days.
    Jo-Ann
  • mruble
    mruble Member Posts: 174
    #5
    Sounds familiar
    Cheryl --

    Rickie and my husband could be brothers! They sound very much alike (strong willed, determined). I think my husband has made it as far as he has because he's so darn stubborn! And it sounds like you have to push hydration as much as I do. Unfortunately, Chad did end up in the hospital after his chemo two weeks ago. I'm not sure why the hydration issue is such a tough one!

    How often is Rickie getting treatment? I hope he has time to feel good before his next one!

    Mary
  • Daisylin
    Daisylin Member Posts: 365
    #6
    mruble said:

    Sounds familiar
    Cheryl --

    Rickie and my husband could be brothers! They sound very much alike (strong willed, determined). I think my husband has made it as far as he has because he's so darn stubborn! And it sounds like you have to push hydration as much as I do. Unfortunately, Chad did end up in the hospital after his chemo two weeks ago. I'm not sure why the hydration issue is such a tough one!

    How often is Rickie getting treatment? I hope he has time to feel good before his next one!

    Mary

    Cheryl,
    I have been hoping to see a post from you here. It's been a while, and like a little mother hen, I get worried! I am sorry to hear that Rickie has been having problems. He sure sounds like a fighter! Hydration indeed seems to be a huge issue for all of our guys. nag, nag, nag... I hope he's feeling better soon and able to keep fighting.
    be well.
    Chantal
  • cher76
    cher76 Member Posts: 292
    #7
    mruble said:

    Sounds familiar
    Cheryl --

    Rickie and my husband could be brothers! They sound very much alike (strong willed, determined). I think my husband has made it as far as he has because he's so darn stubborn! And it sounds like you have to push hydration as much as I do. Unfortunately, Chad did end up in the hospital after his chemo two weeks ago. I'm not sure why the hydration issue is such a tough one!

    How often is Rickie getting treatment? I hope he has time to feel good before his next one!

    Mary

    Mary,
    Yes they do sound a
    Mary,
    Yes they do sound a lot alike! I also have a hard time understanding why he is so reluctant to get the hydration. I wanted him to have it the day after chemo but he didn't want to. Sometimes I think maybe it is a control issue. Here is this guy who was running two very successful furniture stores, had about thirty people working for him, people depending on him, and suddenly he has control over very little in his life anymore. And he thinks if nothing else I will have control over myself. I just think that's it, and I have to allow him to feel like he does have some control. His chemo regime is every three weeks. So he will be due to go in again on the 23rd. So basically we have a week and a half to feel good. Today was a great day, and he actually was able to eat breakfast and lunch without a single gag! That has not happened in months! So we do. Have lots to be thankful for. Hopefully he will gain back some of the 10lbs he lost this week
  • paul61
    paul61 Member Posts: 1,392 Member
    #8
    cher76 said:

    Mary,
    Yes they do sound a
    Mary,
    Yes they do sound a lot alike! I also have a hard time understanding why he is so reluctant to get the hydration. I wanted him to have it the day after chemo but he didn't want to. Sometimes I think maybe it is a control issue. Here is this guy who was running two very successful furniture stores, had about thirty people working for him, people depending on him, and suddenly he has control over very little in his life anymore. And he thinks if nothing else I will have control over myself. I just think that's it, and I have to allow him to feel like he does have some control. His chemo regime is every three weeks. So he will be due to go in again on the 23rd. So basically we have a week and a half to feel good. Today was a great day, and he actually was able to eat breakfast and lunch without a single gag! That has not happened in months! So we do. Have lots to be thankful for. Hopefully he will gain back some of the 10lbs he lost this week

    I can understand where Rick is coming from
    Cher,

    I can certainly identify with were Rick is coming from. I ended up in the ER with dehydration because I wanted to try to drink enough liquid on my own rather than go back for IV hydration. In my case, it was a 45 mile drive to the infusion center, and the hydration process took two to three hours, so it basically consumed an entire day.

    I felt maybe if I forced liquids it would keep my wife and I from having to spend an entire day at the infusion center. I learned that there was no way I could drink enough to offset the impact of Cisplatin, Epirubicin, and 5 FU on my system. The last three cycles we just set up a day of IV hydration three days after each infusion and it really made me feel much better.

    I am glad to hear that Rick is doing better now

    Best Regards,

    Paul Adams
    McCormick, South Carolina
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #9
    cher76 said:

    Mary,
    Yes they do sound a
    Mary,
    Yes they do sound a lot alike! I also have a hard time understanding why he is so reluctant to get the hydration. I wanted him to have it the day after chemo but he didn't want to. Sometimes I think maybe it is a control issue. Here is this guy who was running two very successful furniture stores, had about thirty people working for him, people depending on him, and suddenly he has control over very little in his life anymore. And he thinks if nothing else I will have control over myself. I just think that's it, and I have to allow him to feel like he does have some control. His chemo regime is every three weeks. So he will be due to go in again on the 23rd. So basically we have a week and a half to feel good. Today was a great day, and he actually was able to eat breakfast and lunch without a single gag! That has not happened in months! So we do. Have lots to be thankful for. Hopefully he will gain back some of the 10lbs he lost this week

    Thinking of You
    Hi Cheryl and Rick
    Just wanted to let you know I am thinking of you. I agree with Rick, It is working...so...keep up with the chemo. Take the anti nausea meds daily, at the same time of day if possible. Do not wait to take them. So glad yesterday was a great day! See...you can have good days. Take it easy, keep in touch. I have not been able to get into the chat sight...grrrr...:(
    Tina in Va

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