Roller Coaster Ride – No kidding

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  • #74682
    marions
    Moderator

    Kris….Good News Section is what I think of when reading your post. Enjoy, enjoy.
    Hugs,
    Marion

    #74681
    kvolland
    Spectator

    Lainy and marions

    We both say thanks for the Birthday wishes. It was a long drive home but worth it to put our feet up in our own chairs. Now for Chinese food for dinner….his Bday request so I didn’t have to cook either. House was still standing and fairly clean so I was happy. My son is looking good too so that made me even happier. Glad to be able to celebrate at home.
    Thanks to everyone for your support and input the last few days. It has been greatly appreciated.

    KrisV

    #74680
    marions
    Moderator

    kvolland….Happy, happy Birthday. Given the circumstances, celebrating at home beats spending this spcial day in the hospital.
    Hugs,
    Marion

    #74679
    lainy
    Spectator

    I just want to wish your hubby a Happy Birthday and his biggest gift is probably to come home. Hope you have an enjoyable weekend. Try to take one day at a time to get through this because as you see thinking too far ahead things come up and changes take place. By taking each day you can concentrate on the here and now. HAPPY BIRTHDAY!

    #74678
    kvolland
    Spectator

    marions
    I have a feeling that is the way things are going to go. They say there is nothing wrong with the liver right now (Liver function is better now that presurgery) and they don’t see anything on it….yet, because I know they can’t see it all. But I know they are already worrying about the stricture and wanted to put a stent in with ERCP last time we were in. That did not come up this time…mostly worried about the port. Just want to get to doing chemo but I suspect infection will be an issue.

    And he gets to go home today…..It’s his 50th Birthday today….what a way to celebrate it….coming home from the hospital.

    #74677
    marions
    Moderator

    kvolland….I retrieved a posting with possible similiarities to your husband’s situation: Here it is:
    ” My husband continues to be cancer free. Unfortunately he has continued to have many complications from the surgery that got rid of the cancer. He developed multiple abscesses in his liver and then a benign stricture of the bile duct which required a biliary drain. He still has the drain (3 months now) and has had many infections which required severals rounds of iv antibiotics.”
    Hugs,
    Marion

    #74676
    lainy
    Spectator

    Thanks for the update and I so hope you can go to work Monday, enough of this playing around! Some playing, yes? I totally agree with you about something opening up from the surgery. Teddy had some pockets from his Whipple and they do take time to heal. Try to rest up over the weekend, you certainly have had enough this week! Sending my best to all of you!

    #74675
    kvolland
    Spectator

    Well, we finally have a plan. I convinced them NOT to pull the port out and we are going to due two weeks of IV antibiotics through it and hopefully that will kill it IF it’s in the Port or where ever it is in the body. It will put off chemo a week and I am not sure that the docs are all convinced it’s the right decision but it was given to us as an option.

    marions – I tried getting them to just give us some antibiotics to have on hand but they aren’t at that point yet. They want to try to find the source and I suspect that he may have a small abscess in his belly from the original surgery. We had issues with the incision and a deep probably 7cm pocket that opened up in the middle of the incision. I just suspect that its a small something that they aren’t seeing on the CT scans. Just my hunch from years of nursing. Besides if they pull it we have to have another surgery to put another one in….I don’t want that. And I am driving him nuts with the temps, blood pressures and all that. He’s getting good and checking himself.

    And I am so proud of my daughter for stepping up. This has been pretty hard on her and I have had to ask her to do things she not used to….along with the stress of two cancer and trying to raise her son.

    Home tomorrow though! WooHoo and maybe back to work on Monday…for me. I can hope.

    #74674
    marions
    Moderator

    kvolland….I made sure to have a bottle of CIPRO on hand – post resection and beyond- and would start the antibiotic at the first sign of an infection. Also I would take my husband’s temperature twice per day; drove him crazy, but it made me feel better and proved to be the right thing to do. Several times we were able to catch something brewing before it had a chance to get out of hand.
    Hoping for your son’s abscess to be behind him soon and for your daughter to receive the kudos she deserves. Sure was worth a chuckle on this end.
    Hugs,
    Marion

    #74673
    clarem
    Spectator

    Good for you on standing your ground.

    It’s amazing the strength you draw on – sounds like you daughter is discovering that too.

    #74672
    kvolland
    Spectator

    Well the docs are still standing and scratching their heads. CT scan came back negative for any abdominal abscess from the surgery and surgeon says he doesn’t see any reason to do the ERCP or any exploring right now. I have pushed hard NOT to pull his port unless we can prove that the infection is coming from there. Initially they said they had to pull the port to find out but now they are saying there is a series of tests that they can do that can pinpoint the port….okay let’s do that people rather than have to take the port then ANOTHER surgery to put another one in.
    Talking about sending him home with IV antibiotics which is fine with me. I can deal with that.
    Did get to go home last night….had to check on the son. He just spent 5 days inpatient for an abscess that developed in his neck after his thyroid cancer surgery. They opened him up a bt and now has daily dressing changes. My 22 year old daughter who thinks everything is yucky (changing a dirty diaper on her own kid about sends her over the edge) actually stepped up and is doing the change with no whining….amazed at that. Going to make her a nurse yet. =)

    #74671
    lainy
    Spectator

    YOU GO GIRL AND WE ARE ALL 200% BEHIND YOU! I WOULD CERTAINLY WANT YOU IN MY CORNER.

    #74670
    kvolland
    Spectator

    Oh boy, I wish I could do email that would make it so much easier but texting is the wave in our lives. Initially when he had surgery we had it all worked in a phone tree. One family member that would take a text from me or one co-worker and then they would forward it on. It worked for about 4 hours into surgery then when there were no updates everyone assumed that they just weren’t getting information so it reverted back to me (and after 14 hours it was awful). I narrowed it down again but I can’t seem to get his family to back off…..of course there is a HUGE history there. I have never been good enough for him and have battle that from day one. Now I don’t care. I give them information when I have it and ignore when I don’t. I also turned the phone off in his room so they can’t bypass me and bug him. Maybe it is overprotective but it’s not his job right now…..his job is to get well and beat this thing. I really just quit worrying about what other people or think or care, as long has Mark is comfortable and not upset.
    I think I probably wouldn’t be so overwhelmed if it wasn’t both my husband and my son trying to wade through this. The nice thing is my son is able to deal with his friends so I don’t have to and that takes a bit out of it.

    #74669
    lainy
    Spectator

    I’m lov’in your attitude more and more. OK so this is how I handled the emails. First I sent out 1 major email to all friends and family that I just could not possibly keep repeating and repeating the reports and the things going on and from now on I am sending a nightly email to everyone. I am starting to wear down and the best thing you all can do to help me is to let me ease up on the phone calls. I appreciate your concern but we are now going to do it this way. It worked! I was nice and not snotty and for 3 months that’s what we did. Oh my goodness the relief I had. I explained it to Teddy and he was all for it. Then when they would call and want to talk to him it was easy breeze and a short hello so he didn’t wear out either. People are funny. Anyway, this worked for us.

    #74668
    clarem
    Spectator

    Hi Kvolland,

    You have so much to contend with – no wonder you feel like you are having a breakdown. I know it is hard but making time for you to see your doctor is a good idea. It’s to easy to neglect yourself at the moment. When my sister was first diagnosed, my GP gave me something to take away the horrible anxiety and sick feeling in my stomach. It was a low dose blood pressure tablet that I took when that horrible stomach feeling was there. There may well be something you can get that will help you.

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