Update on Mike (hopper52)

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Hi EC survivors. This is Linda, Jennifer, and Lisha, writing on behalf of our father, Michael (hopper52), who is an active member and friend to many of you. We wanted to first thank everyone for being such a source of inspiration, hope, and guidance for our father. All three of us live in the northeast, so we are certain many of you are closer to him in ways we cannot imagine. We also wanted to update everyone briefly on his condition, as he's been absent for a while. Maybe you can give our family some more rays of hope.

Dad had developed some terrible pains in his abdomen and finally after too much pain, he went to the emergency room at our local hospital. He has had several large, hard masses in his abdomen, and during his week-long stay in the local hospital, some of the mass had even started to surface through his belly button. After CT scans, the doctors agreed that the cancer had spread, but we kept hoping that when Mike gets transferred to Moffitt Cancer Center, the radiologists, surgeons, and specialists would agree they were just the same hotspots from his hernia and other scar tissues. On the 17th, after a week at the local hospital, Dad was taken to Moffitt where we continued to hope that his condition will improve.

We didn't realize the roller coaster of diagnoses that would follow. One day, we are told the cancer had spread, the next day, that he had only weeks left, the next, that the sonogram showed only bowel and they couldn't perform a biopsy. Finally, on the morning of the 21st, the doctor tells my dad that they are unsure, but that they are doing the surgery that day to see what's going on in his abdomen and possibly proceed with his scheduled esophagectomy. It was an all or nothing shot, but of course we were hopeful. A short two and a half hours after he went into surgery, the surgeon called us into the consultation room and told us that the cancer had spread extensively and had attacked his small intestine and colon. In some places, the tumors had almost completely obstructed his bowels -- the source of his extreme pain and swelling, and the source of the hotspots they'd seen in previous CT scans. They repaired his bowels as much as they could in order to allow him to eat. They were only able to remove one tumor (the one irritating his hernia spot) and they rerouted his colon to bypass another section seriously obstructed by the cancer. A biopsy confirmed that it is EC. They've given him a G-tube for future drainage, again with the goal of allowing him to eat without being fed through a tube. Because of the ascites, they had to suture him closed. He is recovering slowly but steadily, and has mainly been sleeping; thankfully his pain is being managed so he is somewhat comfortable. The doctors should remove his NG tube tomorrow, and then move him to liquids, with the goal of letting him come home in the next couple of days (barring any complications).

We've been told he has weeks to a month left, and we've been told perhaps three months max, and that chemo would extend his life for maybe a year (though he wouldn't be able to start for a month because of the surgery). A hospice liaison will be visiting tomorrow.

We think Dad had been expecting this for a while, but it doesn't in any way soften the blow of learning how badly his body has been damaged by this disease. We are trying to be hopeful...trying to claim that slimmest of chances that we have more time with him than just a matter of weeks. And all along, we have been thinking of you, again grateful for your love, support, and prayers for Dad, and wanting to reach out. We have no idea what is going to happen, or how to prepare for the coming weeks (hopefully months!). The doctors have explained a lot about his condition and his prognosis, but we find ourselves with more questions, and we want to know more than just the medical side of things. We'd appreciate any advice you can offer.

Thank you, again and again.

Comments

  • annalan
    annalan Member Posts: 138
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    So very, very sorry to hear
    So very, very sorry to hear about your dad. I don't post often here but do read several times a day so feel that I know people and quietly share their joys and their sorrows. I miss people when they don't write for a while and only looked yesterday to see when your dad's op was due as he's not been on here for a while and was so regular with his postings which I loved to read. I can't tell you how sorry I am to hear of all the problems he's been having. I'm sending prayers and good wishes to you all.
    Ann (2)
    Wife of Alan T3N1M0
  • dodger21
    dodger21 Member Posts: 85 Member
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    annalan said:

    So very, very sorry to hear
    So very, very sorry to hear about your dad. I don't post often here but do read several times a day so feel that I know people and quietly share their joys and their sorrows. I miss people when they don't write for a while and only looked yesterday to see when your dad's op was due as he's not been on here for a while and was so regular with his postings which I loved to read. I can't tell you how sorry I am to hear of all the problems he's been having. I'm sending prayers and good wishes to you all.
    Ann (2)
    Wife of Alan T3N1M0

    Sorry
    Oh no!!!
    I am so, so sorry to hear this. Mike was really looking forward to his surgery and being on the road to recovery. I'm at a loss for words as to how extensive it has spread.
    When he wakes, please let him know how everyone here loves him and is praying for him.
    Stay strong girls and please keep us updated while we continue to pray.
    And most importantly, make sure those doctors are keeping him as pain free as possible. There are some lovely people here who have been there and will give you advice if the pain gets too bad.
    Please give him a kiss from all of us.
    Danielle
  • casp42
    casp42 Member Posts: 79
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    dodger21 said:

    Sorry
    Oh no!!!
    I am so, so sorry to hear this. Mike was really looking forward to his surgery and being on the road to recovery. I'm at a loss for words as to how extensive it has spread.
    When he wakes, please let him know how everyone here loves him and is praying for him.
    Stay strong girls and please keep us updated while we continue to pray.
    And most importantly, make sure those doctors are keeping him as pain free as possible. There are some lovely people here who have been there and will give you advice if the pain gets too bad.
    Please give him a kiss from all of us.
    Danielle

    prayers
    Dear Hopper's Family,

    I'm so sorry to hear this, may god give you all strength and sending prayers to your family.

    Carolyn
  • Joel C
    Joel C Member Posts: 174
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    casp42 said:

    prayers
    Dear Hopper's Family,

    I'm so sorry to hear this, may god give you all strength and sending prayers to your family.

    Carolyn

    Michael would be proud

    Girls,

    I’m so very sorry to hear Michael is in such a bad situation. It was obvious from reading Michael’s posts that he is a good person. And it’s obvious from reading your post that Michael set a good example for his children. I can feel the love you have for your dad and nothing makes a parent prouder than knowing they did well by their children. Let Michael know how you feel.

    Joel
  • Laura23
    Laura23 Member Posts: 81
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    Joel C said:

    Michael would be proud

    Girls,

    I’m so very sorry to hear Michael is in such a bad situation. It was obvious from reading Michael’s posts that he is a good person. And it’s obvious from reading your post that Michael set a good example for his children. I can feel the love you have for your dad and nothing makes a parent prouder than knowing they did well by their children. Let Michael know how you feel.

    Joel

    So sorry
    Dear Linda, Jennifer and Lisha,

    I am so sorry to hear of what your father has been going through. He and I joined the board around the same time. My husband had the same initial diagnosis as your father and they both finished chemo and radiation about the same time as well. I always looked forward to your father’s posts to follow his progress and was dismayed when his PET scan came back showing some spots in his abdomen. I thought all was well when the biopsy came back good and his surgery was scheduled.

    I have missed his posts these past few weeks and thought that maybe he was taking a break or taking a vacation. I am so very sorry to hear what he has been going through. I cannot offer you any advice but there are many people on this board who can, such as Eric and Sherri.

    But I can and will pray for you, Michael and your entire family. This is a beast of a cancer. I pray for strength, comfort, healing and a peace beyond understanding.

    Thank you for letting us know and please keep us updated.

    Laura
    Wife to Luis, age 51
    Dx 4/11/2011 T3N1M0
    MIE 8/30/2011
  • paul61
    paul61 Member Posts: 1,391 Member
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    Prayers coming your way!!
    Linda, Jennifer, and Lisha:

    I am so very sorry to hear this latest development about Michael. He has been a source of positive energy and support on our forum for some time. We were all looking hopefully toward his surgery next month

    We are sending along our prayers for his recovery from surgery. We are sad to hear this news but happy that Michael has the love and support of his family during this difficult time.


    Best Regards,

    Paul Adams
    McCormick, South Carolina
  • mruble
    mruble Member Posts: 174
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    So very sorry
    Words cannot express how sorry and sad I am after reading your post. I'm lifting your entire family up in prayer that you may have additional quality time together.
    Mary
  • This comment has been removed by the Moderator
  • flmo
    flmo Member Posts: 65
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    I too am so sorry to hear this news.
    I remember when Mike came on this board. He was so hopeful of positive results after surgery. I live in Fl. I've heard good things about Moffitt Cancer Center. I'm sure that they did everything that they could. As someone else said, make sure his pain is well managed. I pray that you girls have many good days with your father.

    Maureen -wife of Santo
    MIE UPMC TlNOMO
  • Donna70
    Donna70 Member Posts: 852 Member
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    flmo said:

    I too am so sorry to hear this news.
    I remember when Mike came on this board. He was so hopeful of positive results after surgery. I live in Fl. I've heard good things about Moffitt Cancer Center. I'm sure that they did everything that they could. As someone else said, make sure his pain is well managed. I pray that you girls have many good days with your father.

    Maureen -wife of Santo
    MIE UPMC TlNOMO

    very sad to hear this
    So sorry and sad to hear this about Mike and was hoping to hear a much better outcome for him. You all are so good to get together and let us all know how he is doing. My thoughts and prayers are with you all that you get some good quality time with your Dad, he is a wonderful fellow and just so sad that they could not do more.
    Donna70
  • Wpturner05
    Wpturner05 Member Posts: 114
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    Linda, Jennifer and Lisha,
    I

    Linda, Jennifer and Lisha,

    I have no great words of wisdom, but I can tell you that my prayers are with your father, all of you and your family. Let him have what he wants - if he wants to live on mcdonald's french fries and milkshakes - get them - if he wants nothing but ice cream and pudding - give it to him - if he wants to drink scotch all day long - allow him (well as long as he doesn't feel worse for it!!:) ) Let him have whatever it is that makes him happy. It may be tiring, but with a team of support - many hands make light work. I am a nurse and have worked in hospice and end of life care - make his days as pain free and enjoyable as possible. Be there for him and with him - he will be better for it and you will feel content with the support you offered him. May the coming journey be one that you can look back on and feel good about. Hospice is an AMAZING program if you do not already have it in place. They will also offer a lot of support and suggestions.

    Whitney
    wife of Kevin, 37 years young
    stage IVb
  • TerryV
    TerryV Member Posts: 887
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    So Sorry!
    My thoughts and prayers are with you, Linda, Jennifer, and Lisha. I hope for the best possible for Michael. He seems like such a great guy and I'm delighted he has strong women behind him. This news is so very upsetting. Like Michael, my husband and I joined about the same time with similar prognosis. We were anxiously waiting with Michael for his results on the "hot spots" found and for a surgery date to be set. And rejoiced with him when they finally did select a date. I always looked for Michael's latest post :) He seems to meet life head on.

    I'm so very glad that you've gotten hospice involved. They will bring comfort to your whole family as their knowledge of pain management and end of life care can't be matched.

    Others with more experience in your situation will post, I'm sure. Please know that we are here for you. EC has broadened all our shoulders and strengthened our spines. Don't hesitate to call on us for additional support. Our prayers for comfort and peace to you and your families.

    Terry
    Wife to Nick, age 48
    dx T3N2M0 05/19/11
    THE 09/08/11
  • BMGky
    BMGky Member Posts: 621
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    Thanks to your Dad and to
    Thanks to your Dad and to you for letting us know how he is doing. Sure wish the news had been better. I have been worried about him as he was having so much pain. I am deeply saddened as he tried so hard. Let him know we have him in our prayers. Hope he has comfort and joy in sharing his time with his family. Mary
  • BMGky
    BMGky Member Posts: 621
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    Thanks to your Dad and to
    Sorry. Double post
  • JimboC
    JimboC Member Posts: 264
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    Thank you for the update.
    Thank you for the update. When I had my surgery, I asked my daughter to post an update as well because we all do become very attached even though we may never meet face to face. I am so sorry to hear about your Dad's condition. I will be praying for your Dad and entire family.
  • unclaw2002
    unclaw2002 Member Posts: 599
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    So sorry to hear the news -
    So sorry to hear the news - I also am a daughter and understand how you must be feeling. My dad went from Stage III to Stage IV before he could have the surgery. If you want to talk just private message me and I will be happy to chat with you. In any event I will keep your dad and your entire family in my prayers.

    Best,
    CIndy
  • mishti
    mishti Member Posts: 24
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    I can feel your pain. Even I
    I can feel your pain. Even I am a daughter and I can feel how helpless and devasivtated you must be feeling. I am really sorry. I thought Michael will recover and come out of this. But life has its own plans. May god give u strength.
  • chemosmoker
    chemosmoker Member Posts: 501
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    Prayers and MORE prayers
    Linda, Jennifer, and Lisha,

    Michael is a dear friend and a wonderful human being.
    I am so saddened to have found this post tonight after being away from the board.
    My heart and prayers go to you and to your dad. He is truly an inspiration and has helped me numerous times since I was diagnosed in June.
    I can ONLY pray that you get him home to his football, his family and his Bible.
    He deserves, as it was already said, to have ANYTHING and EVERYTHING that he wants and needs for the time he has left with you now.

    Hug allot, talk allot and remember to cherish every moment together with him now.
    Make a mental note of every time you hold him, and record this in your mind so you can have it to hold on to when he is not there to hold you. It will mean the world later.

    I was so hoping to be reading that he was through surgery, like the rest of us here, and that he would be going home to learn to eat. God has a plan for Michael and Michael of all people knows this. I know he has the peace of knowing he will have peace and no pain when he gets to go home, after he has been home for as long as God allows.

    You all will be in my prayers and I will be thinking about you, and Michael, all day every day until the next post.

    As it was already said, Hospice is a Godsend and will make life so much better for all of you and especially for Michael. They are the experts and pain management and will take care of his every need so you needn't worry about him being comfortable, and you can concentrate on spending time with him now.

    Keep us informed and may God bless you and hold you close.

    -Eric
  • hopper_daughter3
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    Thank you!
    We so appreciate your love, prayers, and support for Dad and for our family. Most of you have seen that he is back on the board now that he is home. He is recovering from surgery slowly but steadily; we are taking it one day at a time.

    We read your words of encouragement as we sat next to Dad after surgery, and I can't tell you how comforting they were. You have given us such comfort--and much perspective--as we begin this next part of the journey.

    Thank you, again, and God bless you.

    Lisha
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
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    Thank you!
    We so appreciate your love, prayers, and support for Dad and for our family. Most of you have seen that he is back on the board now that he is home. He is recovering from surgery slowly but steadily; we are taking it one day at a time.

    We read your words of encouragement as we sat next to Dad after surgery, and I can't tell you how comforting they were. You have given us such comfort--and much perspective--as we begin this next part of the journey.

    Thank you, again, and God bless you.

    Lisha

    Thinking of You
    Hello Hopper girls and Mike
    Thank you all so much for his update. I was a caregiver for my dad. He passed from EC in March 2010 when the cancer went to his liver. I can relate to you all. I have learned in this last year and a half to tell people who are going through this cancer journey, that "If I knew then, what I know now"....we would have done this differently. My dad was stage IV no option for surgery, so there, your dad is lucky. Once my dad's cancer went to his liver, we thought we could treat it with Xeldo oral chemo like we did with the EC. No....not a good idea. My dad suffered with pain and absolutely no quality of life for 3 mos. It was a blessing when he passed away peacefully for all of us. My advice for all of you, is to listen to Mike. Let Mike make the decisions. Go with you gut feelings. Give Mike the peace he needs to hear. Give him your blessing to accept whatever decisions he makes. God is the only one who knows how much longer Mike will be here. Take that precious time you have left and enjoy his life. Do not dwell on how and when he will pass. Tell him daily how much you love him. Take him to places he has not been, if possible. Let nature take its course, which would mean no chemo, no radiation, just pain management. This is just my experience and advice. I do not want to hurt any of you, just help you. Lean on us here anytime. Keep in touch. Hugs to you all
    Tina in Va