Cross roads

neverquit
neverquit Member Posts: 220 Member
edited March 2014 in Caregivers #1
I know many of you have been where I am today. Mike lost a lot of weight last week with the diaphragm spasms/hiccups and extreme nausea he was having. My two brothers and I finally talked him into going to see his Oncologist yesterday afternoon (he wanted to wait until today since he was supposed to start round 3 of the new chemo). The Dr. wasn't in but the nurse practitioner saw him. She got him on IV fluids right away and anti-nausea meds intervenously. She set up an emergency CAT Scan and endoscopy for him today; she thinks the tumor has spread/chemo has not been effective (even though it showed it would be in the targeted molecular therapy). She will talk to his Oncologist this morning to review what has happened and what she has scheduled.
Although Mike ate OK last night, he had a horrible night; couldn't sleep, hurt all over, so sad...... We had hoped that he would be the One (Neo) and that we would get more time. At 54 (both of us), we were looking forward to retiring and spending more time together playing and laughing after all the years of hard work. We are a great team and we don't want to break up the act. Like most of us on here, we need a miracle (and keep praying for one). If the scan shows the tumor has spread, do you try the next chemo? I just don't know any more. Sorry to be posting this as I know everyone has their own problems.

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    tough place to be
    I am sorry things are so rough right now, neverquit. It is a hard place to be. Watching them hurt is so hard; it is the last thing we want.

    Wait until you talk to the oncologist about the CAT scan results before you feel there is a decision to be made. There may be options that have not yet been discussed because the time hasn't been right.

    Thinking about you during this difficult day.
  • neverquit
    neverquit Member Posts: 220 Member
    #3
    Noellesmom said:

    tough place to be
    I am sorry things are so rough right now, neverquit. It is a hard place to be. Watching them hurt is so hard; it is the last thing we want.

    Wait until you talk to the oncologist about the CAT scan results before you feel there is a decision to be made. There may be options that have not yet been discussed because the time hasn't been right.

    Thinking about you during this difficult day.

    Thanks Noellesmom.
    Thanks Noellesmom. They added a neck and head scan to the tests they are doing.

    You are right about how difficult it is to watch them hurt. I do believe it wold be easier for me to be the one who is sick as I would not have to see him in so much pain, so unsure and so scared.
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #4
    neverquit said:

    Thanks Noellesmom.
    Thanks Noellesmom. They added a neck and head scan to the tests they are doing.

    You are right about how difficult it is to watch them hurt. I do believe it wold be easier for me to be the one who is sick as I would not have to see him in so much pain, so unsure and so scared.

    Agreed
    It is so hard to watch them.
  • sarge57
    sarge57 Member Posts: 50 Member
    #5
    Cross Roads
    It is a very tough spot my wife and just through the same thing, she is 53 we figure another good 20-25 years anyway, house paid, kids gone, she retired last year and I was going to move to part time next year. Aug 2010 wham stage 4 cervical, end of Sept stage 4B, end of Dec 1-3 months left.

    Don’t give even though you know the odds are not with you try anything and everything they suggest at least you will not have any regrets that you both did not try everything possible. It’s a tough pill to swallow and is certainly fair, but try your best you know you have friends here.
  • Pennymac02
    Pennymac02 Member Posts: 332 Member
    #6
    Don't be
    Don't be sorry to post this here. Yes, we all have our problems, thats WHY we post here. I don't know about different types/rounds of chemo, my husbands cancer could not be treated with chemo.

    But I can relate with those painful, nauseous, endless nights, and the waiting on test results. So sorry you and Mike are going thru this; be strong for each other and don't count yourselves out, not yet. This new normal seems to involve a lot of highs and lows.

    Hugs,
    Penny
  • luz del lago
    luz del lago Member Posts: 449
    #7
    Sending hugs and support
    These moments are so difficult. What can we do as caregivers to make things better for our loved ones? Boost, pudding, jello, warm tea with honey? We wish so much to be the one that gives them comfort. I wished to be the one that would make the difference. I was. And your love and care will be, too. At times I found that holding my love's hand, telling him I loved him did better than any pill out there! My prayers are with you, both.

    Lucy
  • 1Teresa
    1Teresa Member Posts: 67
    #8
    luz del lago said:

    Sending hugs and support
    These moments are so difficult. What can we do as caregivers to make things better for our loved ones? Boost, pudding, jello, warm tea with honey? We wish so much to be the one that gives them comfort. I wished to be the one that would make the difference. I was. And your love and care will be, too. At times I found that holding my love's hand, telling him I loved him did better than any pill out there! My prayers are with you, both.

    Lucy

    I HATE Cancer!!!
    I am sick to my stomache for you and all the people here. This is a dreadful disease! I just want to scream AAAAARRRRRRGGGGGHHHHH!!!!!!!!
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #9
    1Teresa said:

    I HATE Cancer!!!
    I am sick to my stomache for you and all the people here. This is a dreadful disease! I just want to scream AAAAARRRRRRGGGGGHHHHH!!!!!!!!

    I heard that scream
    Wondered what it was. Now I know.
  • virtual_voyager
    virtual_voyager Member Posts: 37
    #10
    Noellesmom said:

    I heard that scream
    Wondered what it was. Now I know.

    ....hearts breaking little

    ....hearts breaking little by little.

    V~V
  • mswijiknyc
    mswijiknyc Member Posts: 421
    #11
    words
    I have a New York mouth. For examples, watch the Sopranos, GoodFellas, and Donnie Brasco. Because that's just about the only real coherent string of words I can put into a cohesive sentence.

    I'm also using George Carlin's Seven Words You Can't Say On Television. A lot.

    That said, talk about what you want and what he wants. Bear in mind QUALITY as well. I always wanted to make sure Pat had quality above quantity, and have mentioned this is a very posts. When we were told his options (rad+chemo, palliative chemo, hospice) he wanted to go for rads. I knew in my mind and heart it was not in his best interests because of how physically weak he is and continues to get. Sometimes the patient wants so bad to do things because they think it's what we want.

    I don't want to loose Pat, but I really don't want him to suffer. Quality won out - want him comfortable and at home. He might have gotten a bit more time with rads+chemo, but he would have been miserable.

    As long as you know in your heart you helped him make the best decision for him, then it's good.

    this bites. big hugs.
    April

    P.S. this is THE BEST PLACE to post and speak your piece. We get it, we're either there or have been there. No guilt.
  • neverquit
    neverquit Member Posts: 220 Member
    #12
    mswijiknyc said:

    words
    I have a New York mouth. For examples, watch the Sopranos, GoodFellas, and Donnie Brasco. Because that's just about the only real coherent string of words I can put into a cohesive sentence.

    I'm also using George Carlin's Seven Words You Can't Say On Television. A lot.

    That said, talk about what you want and what he wants. Bear in mind QUALITY as well. I always wanted to make sure Pat had quality above quantity, and have mentioned this is a very posts. When we were told his options (rad+chemo, palliative chemo, hospice) he wanted to go for rads. I knew in my mind and heart it was not in his best interests because of how physically weak he is and continues to get. Sometimes the patient wants so bad to do things because they think it's what we want.

    I don't want to loose Pat, but I really don't want him to suffer. Quality won out - want him comfortable and at home. He might have gotten a bit more time with rads+chemo, but he would have been miserable.

    As long as you know in your heart you helped him make the best decision for him, then it's good.

    this bites. big hugs.
    April

    P.S. this is THE BEST PLACE to post and speak your piece. We get it, we're either there or have been there. No guilt.

    Amazing group
    Thanks everyone. You are an amazing group of people and your advice/words are helping A LOT. I greatly appreciate that you understand and that you are open about your experiences and feelings. Mega hugs to you all!!!!

    Well, we got the results today from the emergency CAT Scan they did last night. Not good. The scan showed that the bile ducts into the liver are restricted, which explains why Mike got so sick. They wanted to admit Mike into the hospital (something he dreaded and was not going to do). I asked them if there was anyway they could do the additional tests they want to do as an out patient. They said it would take almost a week longer to get into the schedule plus that they could do more for him in the hospital to get nutrients into him quicker. I told him the decision was his and our friend that was with us told him that he knew what the best thing to do for his recovery was. He chose the hospital, so I just got home from there.

    I hated to leave him there, but he wanted me to come home and get some good sleep (What, me need sleep?). He is really upset about the possibility of the mets to the liver and I am trying to keep him as upbeat as possible (meanwhile, I am cursing this beast and freaking out in my head). But, they are giving him antibiotics intravenously and he ate something substantial for the first time in 5 days without throwing it up. They also gave him something to sleep (Zyprexa was not working the last 3 nights for him).

    Now a brain scan in the morning and an ERCP in the afternoon. Meanwhile, I will continue praying that he just has a raging infection of the bile ducts (whoever thought I would be wishing that on my husband) and no mets to the liver. If this doesn't test everyone's sanity, I don't know what will.

    So again, thanks for accepting my ramblings and for your words and support.
  • luz del lago
    luz del lago Member Posts: 449
    #13
    neverquit said:

    Amazing group
    Thanks everyone. You are an amazing group of people and your advice/words are helping A LOT. I greatly appreciate that you understand and that you are open about your experiences and feelings. Mega hugs to you all!!!!

    Well, we got the results today from the emergency CAT Scan they did last night. Not good. The scan showed that the bile ducts into the liver are restricted, which explains why Mike got so sick. They wanted to admit Mike into the hospital (something he dreaded and was not going to do). I asked them if there was anyway they could do the additional tests they want to do as an out patient. They said it would take almost a week longer to get into the schedule plus that they could do more for him in the hospital to get nutrients into him quicker. I told him the decision was his and our friend that was with us told him that he knew what the best thing to do for his recovery was. He chose the hospital, so I just got home from there.

    I hated to leave him there, but he wanted me to come home and get some good sleep (What, me need sleep?). He is really upset about the possibility of the mets to the liver and I am trying to keep him as upbeat as possible (meanwhile, I am cursing this beast and freaking out in my head). But, they are giving him antibiotics intravenously and he ate something substantial for the first time in 5 days without throwing it up. They also gave him something to sleep (Zyprexa was not working the last 3 nights for him).

    Now a brain scan in the morning and an ERCP in the afternoon. Meanwhile, I will continue praying that he just has a raging infection of the bile ducts (whoever thought I would be wishing that on my husband) and no mets to the liver. If this doesn't test everyone's sanity, I don't know what will.

    So again, thanks for accepting my ramblings and for your words and support.

    Listen to Mike
    Do try to get some sleep. He is under the care of medical staff and he too will gain some strength from knowing you are getting some much deserved rest. Tomorrow is a new day, and I will be thinking of you both and sending prayers and good wishes.
    Lucy

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