A Little Lost but Trying to Find Our Way.

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  • #39647
    marions
    Moderator

    I understand. This cancerr is not like some of the more known cancers where symptoms and treatments are readily available to us. Hang in there. You are doing a great job.
    All my best wishes,
    Marion

    #39646
    pgaska
    Participant

    hi Marions. I do not the exact cause of her ascieties. Guess I need to find out. So much to learn while time is flying by!! So far learning from a lot of Drs. Her tumor is very large, so no operations or cryotherapies. Looking into diets while on chemo to hopefully shrink it down now.

    #39645
    gavin
    Moderator

    Dear Christine,

    I am sorry to hear of the passing of your mother. Please accept my sincerest condolences. You did everything possible to care for your mother and I know how proud she will be of you. My thoughts are with you and your family.

    Gavin

    #39644
    marions
    Moderator

    pgaska…Thanks for the clarification. I am happy to know that your Mom suffers from very little nausea. Has the physician explained to you the cause of the ascieties? And, do you feel that it has been decreasing with the Gemzar treatments?
    All my best wishes,
    Marion

    #39643
    pgaska
    Participant

    Hi Marion. She actually hasn’t done any vomiting in awhile, though she has been off a wk of chemo. Her next treatment is Friday. When she was on chemo, she would vomit not too much. Just when she took a car ride or when her fluid in her stomach got to be too much. She gets it taken out every other wk or more when needed. Hope that gives you more info. Need all the help!!

    #39642
    marions
    Moderator

    pgaska……I believe that your Mom will have to show improvement before any intervention can come about. Has her vomiting increased or decreased? How about the nausea? Is she being treated for fluid retention?
    All my best wishes,
    Marion

    #39641
    pgaska
    Participant

    I understand Christine, the thought of feeling helpless. My Mom has been recently diagnosed with cc. I feel like I’m running in place. She getting Gemzar at a local hospital. I know this is not the best treatment option. She was supposed to get cisplatin too, but her kidney level is not good enough to get that too. It was 1.6 & needed 1.5 or lower. I am just fustrated because time is flying by which she doesn’t have. Trying to search for surgeons & other options…Dr. Kato said no for operating. Talked to Dr. Kennedy’s office & they said prob. not a candidate for radiation therapy cause she ascertion (sp) liver fluid in her abdomen. Anyone have any ideas or suggestions out there?!

    #39638
    nancy246
    Member

    Christine, I am so saddened to hear of your mom’s passing. She has been through so much and was so strong throughout. I hope your wonderful memories will help you through these most difficult days. I am also sending positive healing thoughts for you dad (physically and mentally) as he continues to recover from his heart attack and the loss of his wife. Your family has been through so much. Hold on to each other tight, you need one another. You have been such a wonderful daughter and caretaker for your parents. Your commitment and your upbeat personality shines through your posts. Our loved ones abide within us forever and their presence is felt for the rest of our days. Take care Christine. Nancy

    #39640
    lainy
    Member

    Christine, this was the most sad but beautiful post about your Mother’s journey. You did everything so right, you really did. I am positive that she was so proud of you and she sounds like she was a very wise woman, she knew when the time was near. I hope that when you think of your mom being ill you will learn to think of the popsicle instead of the CC! What a wonderful memory you can relate to. I had to chuckle as banana is my favorite too. I hope your Father is doing better, how awful to have both parents get sick at the same time. I know that the Service for your Mom will be beautiful. My prayers go out to you and your family.

    To my dearest family some things I’d like to say
    But first of all to let you know that I arrived okay,
    I’m writing this from Heaven. Here I shall dwell with God above
    Here, there’s no more tears of sadness. Here is just eternal love.
    Please do not be unhappy because I’m out of sight
    Remember that I am with you every morning, noon and night.
    That day I had to leave you when my life on earth was through
    God picked me up and hugged me and He said “I welcome you,
    It’s good to have you back again,
    you were missed while you were gone,
    As for your dearest family, they’ll be here later on.
    I need you here badly, you are part of my plan
    There’s so much that we have to do to help our mortal man.”
    God gave me a list of things that he wished for me to do
    And foremost on the list was to watch and care for you
    And when you lie in bed at night, the days chores put to flight
    God and I are closest to you . . in the middle of the night.
    When you think of my life on earth and all those loving years
    Because you are only human, they are bound to bring you tears
    But do not be afraid to cry, it does relieve the pain
    Remember there would be no flowers, unless there was some rain.
    I wish that I could tell you all that God has planned
    If I were to tell you, you wouldn’t understand
    But one thing is for certain though my life on earth is o’er
    I’m closer to you now than I ever was before.
    There are many rocky roads ahead of you and many hills to climb
    But together we can do it by taking one day at a time.
    When you’re walking down the street and you’ve got me on your mind
    I’m walking in your footsteps, only half a step behind
    And when it’s time for you to go . . from that body to be free
    Remember you’re not going . . you’re just coming here to me.

    #39639
    christine4
    Member

    Hello Everybody! I write this post with a heavy, heavy heart. My Mother passed away Sunday morning. She is in a much better place now.

    Since I lasted posted, as you can imagine, things got continuously worst. She had a hard time recovering from the last procedures. Her jaundice got worst and she becoming more and more tired. She started to have more fluids building in the stomach area as well. About three weeks ago, I noticed not only her fatigue, she was shaking and she was having difficulty completing her thoughts. Shortly after that, she was beginning to feel so bad, she asked to go to the hospital. She was admitted to a different hospital this time. We took her to St.Clare’s instead of St. Anthony’s because my Father was admitted a couple of days prior. He had a heart attack and kidney failure at the same time. Sooo, we had both our parents in the hospital at the same time. We were on a very exhausting ride now. My father is slowly recovering. My Mother was told at that time, she had a high level of ammonia in her systems. Never heard of such a thing. But apparently it was caused by the issues my mother was experiencing with her liver. Ammonia build-up in your system, will cause the side effects we were seeing with my mother. Fatique, shaking and memory/confusion with her thoughts. They were able to fix this issue easily enough and she was starting to feel better, except for being tired. The doctors at St. Clare’s did scans and got her results, they were not good. She had cancer through out. We all finally got the truth of her situation. We set-up Hospice and took her home. We made her as comfortable as possible and began our vigilant. My sister and I took turns staying with my mother 24/7. We used a Baby monitor to hear her when see was awake or needed anything. We would carry it around, everywhere we went. My sister named the monitor, ‘Momitor’. Our brother and all our children were coming in as often as possible to visit and give us a break during the day. She really enjoyed all the visits and everybody around her. One thing she loved the most, was her popsicles. So, the freeze had a content supply of popsicles, especially banana favor. It was so cute, you hear singing from the momitor, ‘Popsicle’. We would giggle all the way from the freezer to my mom, bringing her, her popsicle. What joy in a single word. We will never say popsicle again without singing. And everybody want to have popsicles in the freeze now. After about a week at home, my mother decide to go into a facility, because she was afraid, that my sister and I would hurt ourselves, taking care of her.
    She was right. We were worried about hurting her too. She was experiencing more and more pain. We had pain medication for her, but we were worried about what was the right time to go to the next level of pain medication. We noticed daily, she was slipping away quite quickly from us too. We transported her to a facility, that works well with Hospice, on Thursday last week. My father was planned to go to rehab in the same facility. They would finally be together after two weeks. We transported him on Saturday. My father got see my mother Saturday evening. She passed away Sunday morning. She is gone, from this earthly bond, but forever in our hearts and memories. (believe it or not I am lost of words, at this point) I have so much to say about my mother, but my emotions has scatters them up. I have so much to say about this horrible type of cancer, but my anger stops me. I will post them in a day or two, when my emotions are in better check. Have to get through planning my Mother’s memorial first. My mother was a big donor to different causes. In honor of her, we are requesting donations being sent to the Cholangiocarcinoma Foundation. Our battle may be over, but the fight to make a difference is not.

    Oh God, I miss her tremendously!
    Christine

    #39637
    lainy
    Member

    Sorry, I have to smile at the before and after pictures of your liver. I hope you were smiling! Glad you are back you were missed!

    #39636
    pcl1029
    Member

    Hi,Lainy,
    Thanks for your cheerful welcome.
    I am a little bit tire,but beyond that I am as good as new.
    They find no cancerous growth base on the pathology report;may be the RFA and chemoembo did a good job.
    It took only three hours for the surgery and Dr.John Brems did honor my request to have 10 additional unstained slides prepared for my future needs.
    On the other hand I don’t know how many of you will do the same request I did,
    I finally meet my enemy face to face,I ask Dr.Brems to take 3 pictures to show me where my cc is( I saw my own liver finally); the cc after they cut it out and
    another picture just after the removal of the CC; it is very interesting and valuable to me because I like biology,chemistry and I like to take pictures too.
    Thanks for your cheerful welcome once again.
    God bless.
    beca

    #39635
    lainy
    Member

    HEY, Percy, is that you???? Oh my goodness, it is so very good to see you. How are you doing?

    #39634
    pcl1029
    Member

    Hi,
    I STRONGLY second to Lainy’s suggestion.
    get all the surgical,pathology reports,CT scan and MRI and labs and get a second opinion for Barnes Jewish Hospital as soon as possible.
    they are better equip to due with CC.
    God bless.

    #39633
    marions
    Moderator

    Christine……although, your Mom’s GP should receive all results I would think that you would want to speak to Dr. Gu. (At least initially.) Dr. Gu is the specialist and will be able to answer your questions. Therefore, you would want to address each issue; the fluid, the fact that a tumor is preventing the placement of the drain, etc. Additionally, you might want to request a copy of everything pertaining to your Mom’s disease. You will then be able to consult with another physician if you so choose. Good luck and please, keep us posted.
    All my best wishes and big hugs are coming your way,
    Marion

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