It’s been a while

Discussion Board Forums General Discussion It’s been a while

Viewing 13 posts - 1 through 13 (of 13 total)
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  • #91397
    darla
    Participant

    Lainy, That doesn’t sound good. Cut back and see if that helps and take a lot of naps today. You need to rest and heal. :)

    #91396
    lainy
    Participant

    Darla, what a lovely Anniversary gift!!! OH great! My poor Daughter had to wake me up as I have been screaming all night in my sleep and having nightmares. I know it is either from the anesthetic or the Oxycodone!!! Think I will have to cut that pill in half at night. WOw, I am exhausted. lOL

    #91395
    darla
    Participant

    Thanks Lainy! Glad to see you back so soon. Hope this means you are healing quickly and feeling well. No lights yet but did find a picture I had misplaced and all of a sudden, there it was in a place I had looked several times. And a feather! Do still have the electrical signs from time to time. Yes, our new normal. We just learn to adjust.

    Take care.

    Hugs,
    Darla

    #91394
    lainy
    Participant

    Oh, my Dear Darla, Happy Anniversary and I hope the lights announced the arrival! We sure do learn how to live our new normal! Yes?

    #91393
    darla
    Participant

    I’m doing OK. Thanks for asking. I just try to keep taking my own advice and take things one day at a time. Although it’s been almost 7 1/2 years, some days that is still harder to do the others. Today was one of them. It would have been our 49th anniversary . I try not to dwell on that and remember that we did have a lot of good years together. We were very fortunate and had a good life together. So I try to remember all the good times and there were many.

    Hugs,
    Darla

    #91392
    pfox2100
    Member

    Thanks Darla. How is everything with you?

    #91391
    darla
    Participant

    Porter,

    Thanks for the details. Glad to hear things are going relatively well and that your great attitude is still in place. I’m sure you will get some replies to your questions about pain management soon. Keep on living your life and enjoying your children. Take care and pop in whenever you can to let us know how you are doing.

    Love & Hugs,
    Darla

    #91390
    pfox2100
    Member

    Awe. Thanks everyone. Well as you know this monster continues to be a roller coaster of a ride. DX in 2013 first resection in Jan of 14…Had my first recurrence within 6 months and had a second resection in Feb of 14. So here we are, had a scan a couple of weeks ago. I have a few lung nodules pop up (in fact none of them are new and there hasn’t been concern until now) a couple of them have had some growth over the last 2 scans. Good news, like I said there aren’t any new spots and these have been showing since diagnosis. All labs and tumor marker look beautiful and so does the liver! Obviously the bad news is it looks like they are starting to grow and that being said they are still small and slightly under 1cm. They are bi lateral so they are not wanting to remove them. I see a cardiothoracic surgeon on Feb 8th for a consult with the ideal situation to get a biopsy for a firm diagnosis. From there we will discuss our plan of action with the idea of a clinical trial at MD in Texas if they are malignant. Trying to keep my hopes and attitude lifted up and I know I have no control over the situation and live life to the fullest while I can, enjoy each moment and my children, and overall..I mean i feel good. So that’s where I am at. :)—I also just found out my surgeon is supposed to be at the conference next week, so for those of you that are going—Keep an eye out for my Dr.O—Her name is Susan Orloff. I hope to stay connected more often and always thinking about you guys. Again, thanks for being here and such a huge support group in my life and education me on this disease over the last couple of years. I feel like I have become somewhat of an expert. Long way to come from not even knowing how to pronounce this disease or have any idea of what it meant or entailed. Prayers, hugs, and love to all!

    (Also, I have struggled with pain since surgery pretty consistent off and on. I am now being managed through a pain clinic in town and we are going to start doing nerve block injections for the nerves in my abdomen. Has anyone tried this over their course with this disease and pain management?)

    Porter

    #91389
    darla
    Participant

    HI Porter,

    Good to hear from you. Think of you often and hope all is well in your world.

    Hugs,
    Darla

    #91388
    debnorcal
    Moderator

    Porter,

    I’ve been thinking of you lately, wondering how you’re doing. So good to see your post.

    Debbie

    #91387
    marions
    Moderator

    Porter….I can only echo Lainy’s comments: you have been missed, so thrilled to hear from you and please know, you are never far from our minds.
    Hugs,
    Marion

    #91386
    lainy
    Participant

    Hello, My Dear, Porter! How good it is to see your smiling face with us again! I hope you are feeling good and please let us know how you are doing! We have missed you!

    #12141
    pfox2100
    Member

    Hi cholangio family. It’s been a long time. I just wanted to say hello and check in. I am mostly on Facebook these days, but just wanted to remind everyone I am always thinking about this organization and how grateful I am for it. You guys were my first stop when I was DX in 2013 and I will be forever grateful for this foundation for all the support, awareness, and education. I don’t know what I have done with this foundation. Like i said I’m not on here much and hope to check in more often, but I’m always thinking about this site and the people on this site. Hugs and prayers to all.

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