The chemo is not curative but for quality of life…

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  • #54576
    lainy
    Spectator

    Dear Elsy, there is nothing more important than an informed and active advocate for this stubborn CC. You are doing a commendable job. According to Jim, Dr. Kato reigns supreme so once again you have hit a home run. Best of luck as always.

    #54575
    elsyr73
    Member

    Marion, Cathy and Lainy, thank you so much for the kind and beautiful words and your thoughts and ideas. All of them are fantastic. I truly appreciate it, from the bottom of my heart.

    Granny is getting her second dose of chemo today. She’s so weak from the first one last week. I am seeking out a second opinion with Dr. Kato of NY Presbyterian at the suggestion of some from this site. I’m hoping he can help her. I just refuse to give up on her, I will never loose hope, ever.

    I feel like I’m in a daze, but I don’t let that stop me, I’m proactive and learning as much as I can and doing the most that I can for her to find someone that will not give up on her as well.

    Thank you everyone for being so terrific.

    -Elsy

    #54574
    marions
    Moderator

    Elys…it always hurts and it always sets us on fire when both terms are mentioned:

    #54573
    jathy1125
    Spectator

    Elys-What an amazing grandaughter. Lainy always knows how to make your day better, she offers great advice. I know a lot of people use Caringbridge to keep family informed and document the journey. My daughter was always after me to write things after doctor visits, hospitals, chemo…. etc, and I never really journaled it. I do regret that now, because I have assorted notes, appointment cards doctor visit notes… in a folder, that always bring out a,WOW or remember that day! I found a follow up appontment card after my first doctor visit for itchy-kinda strange because I was in the hospital being told I had terminal cancer!! I keep it on my fridge as a reminder how life changes so quickly! I am pretty sure when you are done with Caringbridge it can be put in book form!
    Lots of prayers for you and your family-Cathy

    #54571
    lainy
    Spectator

    Dear Elsy, under the circumstances it sounds like you are doing all the right things. One other thing I thought of. I am much better at putting my thoughts in to poems and perhaps you could add that to your book, some poems from you.
    I know exactly where you lived. My Brother always stays at the Marriott Desert Ridge. I am about 40 minutes South in an Active Adult Community called Sun Lakes. It’s about 5 miles South of Chandler and just started my 17th year here. LOVE it! I am amazed how the Desert blooms all year round. I am glad that you are where you need to be!

    #54572
    elsyr73
    Member

    Lainy, I do feel comfortable talking about it. What I meant was that I don’t want to tell my mother or grandmother. They have such high hopes and they understood that the chemo was going to be given in hopes of getting her better. I haven’t got the heart to tell them otherwise. I wish I didn’t know.

    I’m a very faithful person, I just don’t want her to suffer. Thank you for your beautiful words and ideas. Actually, I just started on making a book on shutterfly honoring her and putting as many pictures as I can find and also writing special poetry and letters and notes and things. Happy things, I want her to see it and enjoy it before she passes. My intentions are to spend as much time with her as possible. It’s hard with a full time job and kids, but I do spend every weekend with her.

    It’s also very hard because in front of her, I am strong and never ever cry. But when I’m not with her, I’m a mess. I know I’m not the only one going through this and I appreciate your kind words. I wish none of us had to go through this. It’s so painful.

    I used to live in Phoenix for about 5 years. North Phoenix, by Desert Ridge Marketplace. I’m glad I’m back home so that I can be near her.

    Thank you so much.

    -Elsy

    #54570
    lainy
    Spectator

    Dearest Elsyr73, not sure about what I am going to tell you since you don’t feel comfortable to talk about it. Teddy and I talked and talked and talked to everyone and anyone, especially family and friends. I updated a whole list of people by e mail daily during his last 3 months. For us it was theraputic to talk and seemed to help us accept and deal with what we knew was happening. To me, if you don’t express and talk you are holding so much inside. It is an excellent outlet. You might just try a little bit and you can always stop it if you are not comfortable with it.
    What to do with her? Spend as much time as you can/want and just make it your own. Let her know verbally how much she is loved. Spend time going through all her old photos. Make sure all have names of people you don’t know on the back and perhaps even make an album together. Go through her recipes and make a recipe book for yourself with her help. Like, ask her questions about a recipe. There is nothing wrong with hoping for the future while still putting her house in order so to speak. It can also be theraputic, I would hope, for the 2 of you. You can do these things in an upbeat manner and not take away her hope. We always say around here that we prefer to stay ‘realistically optimistic’. Once you start taking steps to accept what ever is to be, you will also think of more things you can do. I bet our members will also have some more ideas for you! Try to be strong. Being strong does not mean you don’t love her.

    #54569
    elsyr73
    Member

    Thank you Lainy. this is very hard on all of us. This is one of the hardest things I’ve ever had to go through. How can this happen? I wonder how long this has been manifesting itself in her body? I just got married 6 months ago and she was so full of life and vibrant and so happy and now she is this frail woman with hopes of living through this. I just haven’t got the heart to share this with anyone.

    Can you tell me how to make the most of my time with her? She’s my life and this is so hard on me to see her approaching the end of hers. Is there any hope? Lord hear our prayers…

    #54568
    lainy
    Spectator

    Dearest Elsyr73, Prayers and thoughts coming your way for your Abuelita. It is so hard to watch bad things happen to our loved ones. We wish we had a magic wand to make it all go away. Best of luck on the Palliative Chemo, hope she takes it well.

    #5908
    elsyr73
    Member

    That’s what my grandmother’s oncologist said to me yesterday and I’ve been sick ever since. I’m in the middle of something that I don’t understand and it’s killing me slowly. Please pray for our family.

    Thank you.

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