Skip to content

Riding the roller coaster

Discussion Board Forums Introductions! Riding the roller coaster

Viewing 15 posts - 31 through 45 (of 90 total)
  • Author
    Posts
  • #94437
    momof3
    Participant

    I don’t know why it seems I can’t get a day of stability. Today I left the house for just an hour and when I came home he was on all fours of the floor, saying something about having a reaction to his antiperspirant. A neighbor helped me get him back into bed and I gave him some oxygen to calm him down. The hospice nurse doesn’t have much to offer, other than hat they will talk to the doctors to see if they want to change the lasik regiment since his legs and feet are so swollen.
    I know that now that we are on hospice there is not active diagnostics, but he seems to have transcended into a rapid onset dementia that has me terrified. Tonight it took me 3 hours to get him to take his medicine, use the bathroom, brush his teeth and get to bed. It’s now almost midnight and he is just getting settled.
    I really don’t want in patient hospice since it means even less time with him, but I don’t know that I can handle this, let alone with 3 young kids in the house. The party that seemed like such.a good idea yesterday now feels a million years away, and I don’t know how or if we will make t till then.
    Guess this is just another step down in our nightmare of this cancer…

    #94436
    spokanemom
    Participant

    Gail,
    I am so glad you are having a party!! Don’t hesitate to outsource any tasks to all the friends I know want to help you and your family. I know how crazy the end of the school year gets. I have a kiddo “graduating” 8th grade this year. Enjoy the time with your family and friends.
    Thinking of you,
    Victoria

    #94435
    marions
    Moderator

    momof3…..hoping for the decreased Zoloft dosage to work out. A party is a fantastic idea. With the added support from the healthcare team you should be able to handle the extra work involved. Can’t wait to see you reporting on the successful family affair.

    Telling the kids never comes easy. I too waited as long as possible before telling my youngest son. Timing quite never felt right, but knowing you, I expect things to come together on this end as well.

    Glad to hear you have a handle on the pain issue. Most likely it will increase with time, but as long as you are on top of the game your husband should be pain-free.

    Sending tons of good wishes your way

    Hugs
    Marion

    #94434
    momof3
    Participant

    Thanks everyone. We’ve decreased his Zoloft dosage to see if that could be causing some of the confusion. In the meantime we re-enrolled in hospice services so that I can now have the additional support from the social worker, home health aides, etc.

    The kids have another week of school and also have a lot of end of year activities, especially because the twins are “graduating” from 5th grade and will be in middle school next year. I’ve got to get going on planning the party I’m throwing for them in a few weeks…I needed something to celebrate and to bring as much family together as possible.

    We are going to see his oncologist again on the 23rd, but I’m struggling with the shift from frequent, recurring treatment, bloodwork, etc to a much less regimented form of pain management. I’m not planning on telling the kids we are in hospice just yet — trying to hold on until after graduation at least. I don’t want them to be surprised if there continue to be declines…I know they are already aware as things have gotten quite difficult over the last few weeks.

    Thanks again for “listening”

    Gail

    #94433
    marions
    Moderator

    momof3….happy to hear that everything went well. The exhaustion should diminish day by day. Make sure to alert the physicians about the current state of “confusion.”
    Sending a tidal wave of good wishes your way,
    Hugs
    Marion

    #94432
    spokanemom
    Participant

    Dear Gail,
    Thank you so much for the update. This sounds like such a difficult time for you all and I hope this procedure will bring comfort. I also will be keeping you all in my thoughts and prayers. Hang in there! Are your kids out of school yet? Mine still have another week and we are super-busy with end of year activities.
    Victoria

    #94431
    middlesister1
    Moderator

    Dear Gail,

    My thoughts and prayers are with you – I hope the procedure gives him relief.

    Take care,
    Catherine

    #94430
    momof3
    Participant

    Hi everyone,
    My husband had the chemoembolization yesterday, and they also did a nerve block in the liver in the hopes of reducing the pain. His doctor said he got god coverage with the embolization and they were able to do the entire left lobe. He will evaluate him in a month to see if they can do anything on the right side.
    It was clear from the doctors reaction that the activity in the liver is very significant. We will meet with his oncologist in 2 weeks to see if there is anything else we can do.
    In the meantime, I am just praying that some of his confusion and exhaustion will abate following the procedure.
    Thanks again for your support.
    Gail

    #94429
    marions
    Moderator

    momof3….perhaps your husband needs to see additional information re: the efficacy of chemoembolization and what the anticipated outcome may be for him.

    Hugs
    Marion

    #94428
    momof3
    Participant

    Thanks to everyone for your suggestions. The doctors have come back and suggested he might be a candidate for liver embolization. We will have a consult at Penn on the 31st and hopefully move forward quickly, but if my husband stays in his current state of mind he will likely refuse the procedure. I’m really hoping they can give us hope of increased time and less pain. Fingers crossed…

    #94427
    darla
    Participant

    Dear Gail,

    I’m so sorry that things are not going well.

    You have already gotten a lot of good advice and suggestions so I guess all I can add is that pain management is very important at this point. Relish the small moments and enjoy this time with your husband and family as much as you can, making good memories.

    My thoughts are with all of you. Take care.

    Hugs,
    Darla

    #94426
    spokanemom
    Participant

    Dear Gail,
    I am so sorry for you and your family. It is a great idea to speak with your kids’ therapist and get ideas about how/when to share this latest news. The hardest thing for me was that I wanted to talk about the latest developments with my friends, and I knew eventually the word would get out and I needed to make sure my kids heard it from me, not one of their friends. Please keep us posted about what path you choose to take. I know there are lots of options to address your husband’s pain.
    Take Care,
    Victoria

    #94425
    richnkim
    Participant

    Gail,

    I know the feeling of trying to get in as many memories as you can. My husband was diagnosed Stage 4 CC with mets to the lungs in Jan 2017 and we have a 11 year old son.

    Maybe a good idea could be to get one of those voice recordable story books that he could record his voice reading the story or maybe their favorite book he could record his voice on tape and then they could always listen to it. We have the Night Before Christmas from Hallmark as a recordable book we listen to each season.

    My son e-mails me questions he has about his dad,it’s easier that way for him. I don’t know the ages of your children if this would work but it does keep the lines of communcation open.

    I do take alot more pictures and videos than I used.

    I think the best memory making are just the day to day family life.

    I hope things get better and take care.

    Kim

    #94424
    jpmski
    Participant

    I am sorry, Gail. I’m sorrier for your husband, having three young kids must be unimaginable torture for him.

    If it was me, I would want frequent little bouts of alone time. Not long, but be left truly alone and not hear anyone or anything, like a catnap.

    He’s probably the center of attention and hates it. “How are you feeling?” “You need anything?” “Don’t get up, I’ll get it for you.” “Are you tired?” If it’s anything like the atmosphere that was around my mother, that’s what he’s hearing over and over. I’m pretty sure I would throw everyone out of my house. They all mean well but I don’t know how helpful it is.

    Good luck. I hope it turns for the better soon.

    Joe

    #94423
    momof3
    Participant

    We met today with the oncologist, and since I did not hear from him last night I figured the results were not good. The PET showed that the cancer outside of the liver has been held at bay…no new lesions or higher activity levels.

    The liver, however, is another story. The 7cm tumor is now 11cm, there is a new tumor already at 7cm, and a few other new local lesions. Since the liver did not respond to the original treatment, chemo is now being discontinued. Going down to have the port flushed and pulled, and saying goodbye to the infusion staff was so painful.

    The oncologist is consulting with his colleagues from Penn on the prospect of embolization. It might be a long shot, but if it would provide any potential measure of pain relief or give us more time, it’s worth exploring. It sounds like our only other option is to begin hospice.

    I am not saying anything to the kids at this point other than that he wasn’t well enough for chemo today. I’ll reach out to their therapist tomorrow to get their suggestions, but they have their school concert tonight and are going to a party this weekend, so we will likely hold off until next week. I just don’t want to lie to them, but I also don’t want to take away their hope.

    I have begun to feel the support rallying around me, from my boss to the parents at the kids school (one made us dinner tonight and another scheduled a play date for Thursday when I am getting stair lifts installed). I’m just so heartbroken though that this unrelenting beast of a disease won’t give us a moments rest. And I pray that his body will rally to find some strength to allow for us to make some more memories as a family.

    Thanks again for your support and any ideas are always welcome.
    Gail

Viewing 15 posts - 31 through 45 (of 90 total)
  • You must be logged in to reply to this topic.
©2019 - All Rights Reserved, Cholangiocarcinoma Foundation
Scroll To Top