My Husband and Cholangiocarcinoma – Part 2

Discussion Board Forums Grief Management My Husband and Cholangiocarcinoma – Part 2

Viewing 15 posts - 151 through 165 (of 351 total)
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  • #42274
    mlepp0416
    Spectator

    It appears that the roller coaster has begun again, downhill this time I fear. Tom’s PCP looked at his ‘numbers’ from his blood work on tuesday and wants him back in the hospital for 3 -5 days to get some fluids into his body and some vital nutrients as well, to help ‘build’ him up so he is not so weak. Tom has said yes, but will not agree to a feeding tube and wants another DNR in place once he is admitted.

    As I walked by him tonight he said “Honey, I need a hug” so I gave him a big long loving hug. I know he is scared as he started crying. He made me promise that his little namesake Thomas E. Jaeger will always know how much his Papa loved him. I gently reminded him that between me and Tommy’s Mommy that he would certainly always know about his papa! And that every time I see Lil Tommy, I would be remembering his Papa too!

    At this point, Tom is more worried about me and how I will handle it once he is gone. He is tired, his body is tired and he just wants it to be over because he feels it’s not fair to me. Hogwash! is what I told him. I married for better and for worse, in sickness and in health until death do us part….so he does not have to worry about how I’m handling all this. I’d rather have him here with me be it a day, a week, a month, a year or many more years to come. But I also told him it IS his choice and if he wants to give it up I will back him 110 percent.

    I know that part of the problem is that his body is so worn down and he is getting weaker and that is weighing heavily on his mind. He can no longer do the things he loved to do. He wanted to get the garage all finished for me so I have all the tools I’ll ever need to do little projects. I promised him I’d get it finished and he’ll be able to look down from above seeing me do my woodworking projects that I’ve been longing to do. He really wanted to be able to get new carpeting for the house, but with a $4,800 ded, then 10% for the next $3,000, new carpeting is out of the question. I said that carpeting is the least of my worries, but I’m happy that he is still thinking about me.

    I’ve never lived alone, so when God does call Tom home, that is the only thing I worry about. It will just be me and my kitty cat ‘Bear’.

    I’m hoping that this is just a short roller coaster ride and that whatever the doctor is planning works and I get my hubby back home once again.

    I’m also very grateful that my employer is so very understanding and I get the time off that I need to take care of Tom when these things arise.

    To all of the CC Patients on this site: We Caretakers do what we do for you out of love, for no other reason at all. So please let us do it – let us help you whenever you need or want help. It is a choice we have made willingly.

    To all of the Caretakers on this site: Thank you for making your loved one comfortable, for taking care of their needs even if it means forgetting about your own needs for a time. Thank you for being there for him or her, for doing the things you do every day for your loved one. We have all been through it, there will be more caretakers that will have to go through it and we all understand what a tough job it is. So KUDOS to all of you and a great big VIRTUAL HUG to each and every one of you! From one caretakers to all the other caretakers out there.

    Love and Hugs to everyone. I will post more as I know more.

    Margaret
    “KEEP KICKIN’ THAT cancer”

    #42273
    lainy
    Spectator

    Sorry to hear this, Margaret. Glad Tom was not hurt and didn’t you know ‘pink’ is in??? According to our hospice here that Teddy was in, when you go to the hospital or back to your doctor they take you off but when you come home you are reinstated again. I am beginning to think some of our Medical System operates like the Army…”Don’t ask, don’t tell”! If I know you, and sometimes I think we are sisters of diffrent Mothers, they will not get away with this!!! I remember once Teddy was sent home from the ospital with the IV needle in his arm I had to pull it out. Can’t believe the things I did for love!

    #42272
    mlepp0416
    Spectator

    That darn stubborn man that I’m married too took another tumble yesterday. Trying to straighten a rug on the floor of all things, while he was holding a glass of V8 (RED) juice. He fell backwards and of course got the red juice all over the white (now pink in three spots) carpet. I’ll keep working on trying to get that stain out. He hit his head on one of the kitchen chairs and lucky him did not break any bones!

    And as for Aurora Home Health Care, I don’t care if they NEVER come to our house again. He was on IV Antibotics until tuesday of last week when the infectious disease doctor switched him to oral antibotics. Home Health Care was supposed to come out and draw labs that day to get a ‘trough’ level for the antibotic he was on. We figured they’d come out and take out the line going into his port. They never showed…so yesterday I had Tom call them to see if they were coming out to pull the line and we found out today that they’d discharged him from Home Health Care and they stated that they could not come out and pull the line. So, since the line has been unused for 7 days, we called his doc and he sent an order down to where he gets blood transfusions when he needs them and we had to drive about 30 miles round trip to get the line pulled. Needless to say I was not a happy camper. I called home health car and asked a few questions such as before you ‘discharge’ someone who you know was getting iv antibotics via his port – wouldn’t you first do a home visit and pull the line? Their answer “Yes”…they still have some questions to answer about that one. After the mistakes they made the first time we used them and now this little boo-boo that could have resulted in a blood clot or worse yet another infection…that agency will never come here again and I’m not done with them yet!

    Go with God and let’s KEEP KICKIN’ THAT cancer.

    Margaret

    #42271
    lainy
    Spectator

    Dear PGASKA, welcome to our wonderful family but sorry you had to join us.
    I guess I am a little surprised that the doctor would order Chemo without a firm diagnosis. Where is your Mom being treated? Glad your Mom is taking to the chemo so well. The best thing you can do is read up on everything you can, especially our old posts. Knowledge is powerful and the best way to keep the CC at bay. We also have a search engine at the top of the page and all you need do is type in a word and many posts will appear regarding that word. Another important thing is attitude, an upbeat attitude will work wonders. We do have some good results here but again we need to know where you live. Best of luck and please keep us posted. Oh, one more thing. I am afraid your post may get lost on this long thread so wondering if you could repost under INTRODUCTIONS where more member will see it and be able to welcome you.

    #42270
    pgaska
    Spectator

    Hi. I’m new here. My Mom has been diagnosed (almost) with bile duct cancer. I say almost, because they are waiting on a few “last” tests. The dr. said it all “looks” like cholangiocarcinoma-I’m REALLY starting to hate that word! Anyways, doc decided to treat it with chemo-1st treatment was yesterday. Happy to say she feels better today, more than she has in awhile! She just had Gemzar (sorry if not sp. is right). Was also going to treat w/ Cisplatin, but her kidney level was 1.6 and it should be 1.5 & less to treat w/ that. She was also given 2 types of nausea drugs and some fluid. Anyone have any info. of “successful” treatments/and where to go etc. After she gets some chemo & hopefully some strength back, going to venture to some where with good results. Any more results (recently) on the insulin injections? Would love any info. on treatment on this terrible cancer. Soaking it ALL in. Love to families dealing with this too! Keep the fight!!

    #42269
    32coupe
    Spectator

    Margaret,
    I too want to add kudos to you for your caregiving commitment. During my ordeal of the last couple of years, my wife Donna became my caregiver and more – she became my advocate and protector. That has been difficult for me – I am supposed to be the protector. Now that I am again healthy I have much more appreciation for her and the wives on this forum who daily deal with the drama and the trauma of dealling with a life-threatening illness. Jesus said that there is “no greater love than this…”. My prayers continue for you and Tom.

    bob

    #42268
    lainy
    Spectator

    Great news, Margaret. So, now you have become the “pusher’ to add to the “boxer”. You are awesome, girl. You are a heroine to many Care Givers. Oh, wait, I have a new name for you, “Margaret Nightengale”. Your spirit, attitude, caring are greatly admired. :):)

    #42267
    marions
    Moderator

    Margaret…..A twenty minute walk while pushing a wheelchair makes for quite a workout. You are fantastic. And, whenever tube cleaning advise is needed we will be sure to refer to your comments, because you are the specialist in this field. I am thrilled to hear that Tom is responding well to the antibiotics and that his appetite is coming back. His weight may follow suit now.
    All my best wishes,
    Marion

    #42266
    nancy246
    Spectator

    Margaret, They are right; Tom is very lucky to have such a loving caring wife. Don’t forget to take care of yourself too! Hugs. Nancy

    #42265
    mlepp0416
    Spectator

    Almost forgot, yesterday evening I got out Tom’s wheelchair and I took him for a walk around the neighborhood and tonight when my neighbor and I walked, he wanted to come with. So I got a little bit more exercise by pushing him in his wheelchair for our two mile walk! At one point he asked why we were walking so fast!!!! (That’s how we do 2 miles in about 20 minutes)

    HUGS
    Margaret

    #42264
    mlepp0416
    Spectator

    Thanks everyone! Today was an even better day! He stayed awake all day and even wanted to go out for a quick bite to eat. Ate 1/2 of his bowl of soup and all but two bites of his sandwich!

    I think the crisis is over…but he still has antibotics to take for the next 9 days..and I WILL be flushing his tube EVERY day!!! I still find it hard to believe that some people with a drain tube into their liver don’t ever flush it…that is scary to me because once those holes in that tube get plugged with dried up bile, that is when the ‘bugs’ can become active and that will put the person down.

    Sometimes being a caregiver seems like a ‘thankless’ job, but when I hear the doctors and nurses commenting that when Tom comes in for his tube exchanges, they know that when that bandage comes off the wound site is going to be clean and his skin is going to be perfect with no sores or breakdown of the skin under that bandage. They always tell him how lucky he is to have a wife who cares enough to keep his wound and skin so clean! Comments like that mean the world to a caregiver and helps to make it all worthwhile, cause I feel that I am really ‘making a difference’ to help keep Tom as healthy as I can, one bandage at a time!

    Go with God and KEEP KICKIN’ THAT cancer

    Margaret

    #42263
    marions
    Moderator

    Margaret….great news. I am so happy for you and Tom.
    Hugs
    Marion

    #42262
    darla
    Spectator

    Margaret,

    Glad to hear that things are improving for Tom and for you too. :)

    Thinking of both of you.

    Love & Hugs,
    Darla

    #42261
    nancy246
    Spectator

    Margaret, So glad you are seeing some improvement. You two are awesome! We got Doug’s weight back up by making whey protein shakes and we have been able to maintain his weight. Even days he does not feel like eating he enjoys his shakes. Some days Doug sits in the car while I grocery shop too! Like you said one day at a time and enjoy each one.
    Lots of positve vibes sending your way. Nancy

    #42260
    ronidinkes
    Member

    sending lots of love to both of you!
    take one day at a time
    regards,
    roni

Viewing 15 posts - 151 through 165 (of 351 total)
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