How much more?

NBTXGIRL
NBTXGIRL Member Posts: 31
edited March 2014 in Colorectal Cancer #1
How much more can a body take? Lost my mother in 2006 to colon cancer. Now my 71 yrs. old father went in on June 7th, 2009 for a colonoscopy, perforated colon, emergency surgery, colonstomy, dx's Stage IV colon cancer with mets to liver, spine, both lungs. July 2nd medi port inserted. July 4th hospitalized spread to ribs. July 13th start chemo every other week, three day treatment. July 17th hospitalized due to bad reaction to chemo, Phenogren. July to August, radiation every day. August hospitalized due to bad reaction to chemo, stop Phenogren give Flagil. September 6th pulminary and cardiac embolism together, filter inserted, start coumadin give 5mg to much, give 3 mg to little, give 4mg one day 2mg next day. October hospitalized bad reaction to chemo stop Flagil give Zofran. November lowered chemo treatment, bad reaction. December, onc. withheld chemo. January, PET Scan, chemo has been unsuccessful all mets have doubled in size, liver met spreading to kidneys. Tuesday, MRI of Brain. Today, TUMOR IN THE BRAIN. Stop Avastin, start Decadron, more radiation. He went from 275lbs to 140lbs today, been on Megace since July, stop Megace start Remeron. He is miserable, and yet he already takes, percocet, dilaudid, neurotin and fentanyl patch. Two high blood pressure medications due to all the other meds. Oh, and don't forget the aspirin. So I ask again, how much more can a body take? What now? It seems that I already read half of the list of cancer boards on here. Is this it? Is my father going to die not knowing who I am? Please what can I do? Thank you for listening.

Kim

Comments

  • kimby
    kimby Member Posts: 797
    #2
    (((Kim)))
    Kim,

    I'm so sorry for everything your father has been through. Watching all of that happening to someone you love is excruciating. I can read your pain in your post.

    I don't know how long this will go on or what the future holds for your father. Nobody really does. What can you do? I suspect you're already doing it. Be there for him whether he knows you're there or not. Hold his hand and tell him you love him. Make him his favorite high calorie whatever or his favorite soup. Hugs are tremendous. Make him laugh. Laughter helps the immune system and gets endorphins going so you feel a little better and pain is a little more tolerable. This is something you can't fix.

    Hugs and prayers,

    Kimby
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #3
    how much
    There is no way of any of us predicting the out come for your dad. It doesn't sound good with all the problems he is having with chemo and the fact that it seems to be spreading very fast.My question is what is his doctor saying and what advise is he giving you. I would be asking very important questions about what should be done at this point in his treatment. Ask if hospic should be called in or home health some times the burden is to much for family members to handle and need help with every day care . That would allow you to spend as much time with your dad as possible . As for not knowing you he will always know you are his daughter he may get in a medical state where he can't let you know he knows who you are but he does.Both of my parents in the last stages of their live's couldn't let us know that they knew who we were but the look in thier eyes told us everything we needed to know. God bless you and your family I will add you to my prayer list and just said a prayer as I finished up this post.

    Louann
  • geotina
    geotina Member Posts: 2,111 Member
    #4
    What to do
    Kim, you ask what can you do, you are already doing it. I can feel the pain in your post, that you want to do something more, anything, but this just may be out of your hands. Continue being the loving daughter that you are and make sure you give dad kisses, hugs and lots of conversation. Let him know what a great dad he has been to you and how much you love him. Please keep us advised as to how things are going. Hugs - Tina
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #5
    So sorry
    Hi, Kim.

    You are having to go through so much, and I can feel your pain coming through. I'm so sorry. I will pray for you and your dad. He's had to endure so much physically, and you are going through it emotionally.

    It does sound like hospice might be the way to go. They could help both of you make the most of your time together.

    Please let us know how things go, dear.

    *hugs*
    Gail
  • JDuke
    JDuke Member Posts: 438
    #6
    tootsie1 said:

    So sorry
    Hi, Kim.

    You are having to go through so much, and I can feel your pain coming through. I'm so sorry. I will pray for you and your dad. He's had to endure so much physically, and you are going through it emotionally.

    It does sound like hospice might be the way to go. They could help both of you make the most of your time together.

    Please let us know how things go, dear.

    *hugs*
    Gail

    Kim
    It is heartbreaking to hear the desperation and understandable feeling of helplessness in your post. I am so very sorry that you are having to go through this, especially after having also lost your mother to this awful disease. Try to take care of yourself so that you can continue to be there for your father. I will be praying for you both.
    Blessings,
    Joanne
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #7
    Hi Kim
    It sounds like you are doing all you can do. No one knows how things turn out. One thing I'm pretty sure that they both would want and that is for YOU to make sure you get checkups so you won't have to go through what they've gone through.
    -phil
  • geotina
    geotina Member Posts: 2,111 Member
    #8
    I'm gonna answer a second time
    One of the greatest gifts you can give your dad is to get a colonoscopy. Hugs Tina
  • fringetree
    fringetree Member Posts: 65
    #9
    geotina said:

    I'm gonna answer a second time
    One of the greatest gifts you can give your dad is to get a colonoscopy. Hugs Tina

    Kim
    I'm so sorry that you and your dad have been through so much. I wish I had an answer to how much a body can take, but I don't.

    What really breaks my heart when I read your post is that you are afraid your father will not know who you are. Just the fact that you can detail every painful twist and turn of his illness tells me that you are a loving and involved daughter. If there are things you feel he needs to know about you, tell him now! I know it is not the same thing as having him around...believe me. I just lost my dad a month ago, and it hurts so much that my will not be at my wedding this summer, won't know my kids, that I can't call and tell him all the little events of my day...or the big events of my life from here on...but at least I know I did everything I could while he was around to show him who I am and how much I loved him. There is ONE good thing about this stinking disease, and that it gives you the time and the kick in the butt to express yourself to your dad.
  • NBTXGIRL
    NBTXGIRL Member Posts: 31
    #10
    fringetree said:

    Kim
    I'm so sorry that you and your dad have been through so much. I wish I had an answer to how much a body can take, but I don't.

    What really breaks my heart when I read your post is that you are afraid your father will not know who you are. Just the fact that you can detail every painful twist and turn of his illness tells me that you are a loving and involved daughter. If there are things you feel he needs to know about you, tell him now! I know it is not the same thing as having him around...believe me. I just lost my dad a month ago, and it hurts so much that my will not be at my wedding this summer, won't know my kids, that I can't call and tell him all the little events of my day...or the big events of my life from here on...but at least I know I did everything I could while he was around to show him who I am and how much I loved him. There is ONE good thing about this stinking disease, and that it gives you the time and the kick in the butt to express yourself to your dad.

    Thank you!
    Thank you for all your kind and encouraging words. Dad had a rough weekend so I have not had a chance to get back to the board.

    Have you ever noticed after a diagnosis is made, things tend to get worse. Last July my father started experiencing blurred vision and very slight confusion. I requested a brain scan that came back clear. So, I had his vision check they said it was fine. I attributed these little quirks to his medication. Last week when the nose bleeds started and he informed me that the TV was going from color to black and white. I got worried and requested another brain scan, for which we got the results Friday. This weekend, his confusion hit two fold. For some reason he felt the need to start tampering with his medication bottle. He never touches his pills because I hand them out and I keep them in a kitchen cabinet. The football players were coming out of the TV and crawling in bed with him to watch the game. Someone strung string all over and he was trying to clean it up. Reality hit me in the face yesterday when I woke up to someone opening the automatic garage door. Evidently, he was clear enough to remember it was my parent’s 50th anniversary, so he was walking to his truck to go buy flowers for her grave, in his pajamas. When these bouts are happening they are very real to him, but afterwards, he will tell you it wasn’t. I had to sit him down last night and tell him that I was going to have to hide his keys and medication. The next step is to put bells on all the doors, since he knows how to turn off the monitors. Sad thing is he agreed with me and understood why.

    The oncologist wants to continue palliative chemo and start radiation again. Dad said okay, but I don’t know if this is confused Dad or clear Dad. He has said in the past that he wanted to stop but then would do another treatment. I have told him we would do what he wanted to do. I know doctors are here to save lives, but we knew from the beginning that he would not be cured. So at what point do you assert Medical Power of Attorney and say enough is enough. Hospice informed me that as long as he is accepting chemo and radiation they will not sign him up.

    As for my colonoscopy, my whole family has to be checked since both parents have had colon cancer. Unfortunately, every time I try to schedule mine, Dad gets put in the hospital.

    Thank you again everyone. All my prayers go out to you as we take this journey together.

    Kim
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #11
    NBTXGIRL said:

    Thank you!
    Thank you for all your kind and encouraging words. Dad had a rough weekend so I have not had a chance to get back to the board.

    Have you ever noticed after a diagnosis is made, things tend to get worse. Last July my father started experiencing blurred vision and very slight confusion. I requested a brain scan that came back clear. So, I had his vision check they said it was fine. I attributed these little quirks to his medication. Last week when the nose bleeds started and he informed me that the TV was going from color to black and white. I got worried and requested another brain scan, for which we got the results Friday. This weekend, his confusion hit two fold. For some reason he felt the need to start tampering with his medication bottle. He never touches his pills because I hand them out and I keep them in a kitchen cabinet. The football players were coming out of the TV and crawling in bed with him to watch the game. Someone strung string all over and he was trying to clean it up. Reality hit me in the face yesterday when I woke up to someone opening the automatic garage door. Evidently, he was clear enough to remember it was my parent’s 50th anniversary, so he was walking to his truck to go buy flowers for her grave, in his pajamas. When these bouts are happening they are very real to him, but afterwards, he will tell you it wasn’t. I had to sit him down last night and tell him that I was going to have to hide his keys and medication. The next step is to put bells on all the doors, since he knows how to turn off the monitors. Sad thing is he agreed with me and understood why.

    The oncologist wants to continue palliative chemo and start radiation again. Dad said okay, but I don’t know if this is confused Dad or clear Dad. He has said in the past that he wanted to stop but then would do another treatment. I have told him we would do what he wanted to do. I know doctors are here to save lives, but we knew from the beginning that he would not be cured. So at what point do you assert Medical Power of Attorney and say enough is enough. Hospice informed me that as long as he is accepting chemo and radiation they will not sign him up.

    As for my colonoscopy, my whole family has to be checked since both parents have had colon cancer. Unfortunately, every time I try to schedule mine, Dad gets put in the hospital.

    Thank you again everyone. All my prayers go out to you as we take this journey together.

    Kim

    Totally HeartBreaking!
    Hi Kim

    Wow - what you have gone through is just tremendous - I can only imagine what you are feeling right now. From what you've described, it is a very tall order, but you sound like you are doing all that you can right now.

    I'm a big Quality of Life proponent, so it's sometimes difficult to know when to say when - I hope I know one day when that will come.

    The answers to WHEN are perplexing. As you stated, as long as he accepts treatment, then hospice is out - and knowing which state your Dad is in any given minute of the day...I just don't have the experience or answers here.

    I just felt the pain and sorrow in your post and was motivated to reach out ((KIM))

    I hope that the path towards the right decision presents itself as the days go on and that the decisions will be made somewhat easier for you.

    I admire your courage and tenacity :)

    -Craig
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #12
    NBTXGIRL said:

    Thank you!
    Thank you for all your kind and encouraging words. Dad had a rough weekend so I have not had a chance to get back to the board.

    Have you ever noticed after a diagnosis is made, things tend to get worse. Last July my father started experiencing blurred vision and very slight confusion. I requested a brain scan that came back clear. So, I had his vision check they said it was fine. I attributed these little quirks to his medication. Last week when the nose bleeds started and he informed me that the TV was going from color to black and white. I got worried and requested another brain scan, for which we got the results Friday. This weekend, his confusion hit two fold. For some reason he felt the need to start tampering with his medication bottle. He never touches his pills because I hand them out and I keep them in a kitchen cabinet. The football players were coming out of the TV and crawling in bed with him to watch the game. Someone strung string all over and he was trying to clean it up. Reality hit me in the face yesterday when I woke up to someone opening the automatic garage door. Evidently, he was clear enough to remember it was my parent’s 50th anniversary, so he was walking to his truck to go buy flowers for her grave, in his pajamas. When these bouts are happening they are very real to him, but afterwards, he will tell you it wasn’t. I had to sit him down last night and tell him that I was going to have to hide his keys and medication. The next step is to put bells on all the doors, since he knows how to turn off the monitors. Sad thing is he agreed with me and understood why.

    The oncologist wants to continue palliative chemo and start radiation again. Dad said okay, but I don’t know if this is confused Dad or clear Dad. He has said in the past that he wanted to stop but then would do another treatment. I have told him we would do what he wanted to do. I know doctors are here to save lives, but we knew from the beginning that he would not be cured. So at what point do you assert Medical Power of Attorney and say enough is enough. Hospice informed me that as long as he is accepting chemo and radiation they will not sign him up.

    As for my colonoscopy, my whole family has to be checked since both parents have had colon cancer. Unfortunately, every time I try to schedule mine, Dad gets put in the hospital.

    Thank you again everyone. All my prayers go out to you as we take this journey together.

    Kim

    Dear Kim
    I am so sorry that you have to deal with not only the realities of cancer in a loved one but also the uncertainty of what you should do for him.

    Someone in your dad's health care team should be able to advise you regarding his true mental condition from the brain cancer...parts of the brain affected...cognative impact, etc.

    Making end-of-life decisions for a loved one is probably the most difficult thing to do. But no matter what you determine is the best thing to do....never, ever let anyone even yourself question if you did the right thing. It is so obvious that you are a very special care giver.

    Medical Power of Attorney usually kicks in when the person is incapable of making decisions for themselves. Even though your Dad said okay to further treatment, he may not have been mentally aware that it would not make his confusion go away (I am assuming it won't). If his actions become a danger to himself and/or others, even sporadically, then I would think you would need to seriously consider taking over the decision making process.

    I am surprised about the remarks from Hospice. It was always my understanding that if a patient was certified as terminal with 6 or less months to live they would work with them, even to the extent of pallitative care treatments. Will they even offer to come in to your home to stay with him so you can get away from the situation for even a little while?

    Now, as far as your testing is concerned...DON'T PUT IT OFF...NO MATTER WHAT! Schedule it and get it done, even if Dad is in the hospital. The reality, while not pleasant, is that your Dad has no possibility of a cure, but you have a chance to make sure that colon cancer is not in your future.

    Prayers that your Dad may find peace of mind and body, and that you will feel comfortable in whatever decisions you make.

    Marie

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