Hopper52: Dad's home

Hello friends,

So happy to read about pain free days, post-op weight gain, and promotions! Just wanted to post an update about Mike/Hopper52/Dad: he's home! He was finally released from the LTAC facility to hospice this week, and came home last night (Friday). (Sorry, too, for the radio silence. We've been busy traveling back and forth between our homes and Florida, and Linda, our main correspondent, had hand surgery, which made typing rather difficult for a couple of weeks. We have had you in our hearts and thoughts. Linda's hand--well, finger--is healing nicely.)

It feels good to have Dad home, but it's hard to "give up" treatment knowing how weak he is and where this path could lead. He was walking around the LTAC facility the first couple of weeks he was there, but he has been in bed the past couple of weeks. He's been able to sit up some, and we are hoping to get him into a wheelchair and into this Florida sunshine very soon. The doctors at the LTAC were hoping to close up the abdominal wound so they could isolate the fistula, but Dad's vitals were not good enough, so that procedure went from postponed to tacitly canceled. Low blood pressure prevented the doctors from investigating further Dad's fistula and his increased output through his g-tube. It also meant that the doctors withheld pain medication for a couple of days until it came back up (though they did give him anti-anxiety medication). Thankfully, his blood pressure has been stable the past week or so, and they managed to keep him somewhat comfortable, so he could pursue his goal of coming home. His brother, his daughters, and his son-in-law were all in town for his birthday, and most of us were able to stay for a Very Un-Martha Stewart Thanksgiving (no turkey this year...thank God Steak 'n Shake was open).

Thankfully, hospice is supporting Dad with TPN, a pain pump full of dilaudid, and a wound vac, though the latter still needs installation. They've also given us continuous care nurses for the weekend at least, to help us transition into caring for him when a nurse is not here (looks like I [Lisha] will be checking Dad's blood pressure, administering insulin when necessary, changing and hanging TPN, and changing the wound vac for now...I think that earns me some kind of de facto nursing certification...and it reminds me of how much nursing caretakers do on an everyday basis, without even blinking an eye). Dad's able to swallow, and has been taking in some liquids, though he hasn't asked for any food yet. He's much more alert today than he was yesterday, though he is sleeping a lot more, and has been the past few days. The fistula is still kicking out a good deal, and his g-tube is as well.

Now that we are home, I realize how I get so wrapped up in caring for Dad that sometimes, it just hits me that *this is my Dad, and he is dying of cancer.* So simple, so obvious, but it's such an overwhelming, sad feeling that it takes my breath away. The busy pseudo-nurse quickly takes over again: What needs to be done? Sometimes I manage to shut that nurse up and just be with my dad. Still figuring out how to maneuver these big girl panties.

But, we are so thankful he is finally home, after what feels like a year (initial diagnosis? distant memory). As exhausted as he was from the transport, his eyes were completely focused when they opened the doors of the ambulance.

Today, he said to me, "Thanks for getting me home." I said it was so good to have him. We hope he can gather strength here, but most of all, we hope he is comfortable and at peace.

Peace to all of you.

Lisha, Jennifer, and Linda


  • TerryV
    TerryV Member Posts: 887
    Glad Mike's HOME, Lisha!
    We are SO Appreciative that you all take the time to update us on Mike. It means a lot as Mike is a big part of our "Junior" class. He gave encouragement to us all as he dealt with his own obstacles.

    Lisha - I can't believe how well you hit my emotions on the head. "Overwhelming, sad, takes my breath away" - perfectly described! The quoted statement below is EXACTLY how I was as my husband went through treatment and surgery.

    "Now that we are home, I realize how I get so wrapped up in caring for Dad that sometimes, it just hits me that *this is my Dad, and he is dying of cancer.* So simple, so obvious, but it's such an overwhelming, sad feeling that it takes my breath away. The busy pseudo-nurse quickly takes over again: What needs to be done? Sometimes I manage to shut that nurse up and just be with my dad. Still figuring out how to maneuver these big girl panties."

    It's durn difficult to switch the "nurse" off. She's such a protective buffer to actually feeling the pain *and* fear of being the loved one of an EC patient. Good I guess to have the escape to the "nurse" mode, but I know my husband also wanted the hug and love of a spouse. Much as I'm sure Mike wants his daughter, not his "nurse", there holding his hand.

    Thanks for all you and your sisters do. I am so certain that it's very hard some days. Know please that you've got us to lean on.

    Love & Hugs to you all! Please let Mike know that he is never far from our thoughts.

  • Ericalynn
    Ericalynn Member Posts: 200
    Love You Michael!
    I think Terry said it all but I want Michael to know that I am out here thinking of him. Please tell Mike he is in my thoughts and prayers. I know we only meet in person twice but some how I feel we are more then just EC board friends. Maybe it's the Tampa connection maybe it is our love of football or maybe it is because as Terry said he is part of our "class”. Please tell him how much he helped me when John was first diagnosed, always so kind and positive.
    You are an eloquent writer and an awesome nurse/caregiver.
    Love to all
  • paul61
    paul61 Member Posts: 1,391 Member
    Good News!!
    I am so glad to hear that Michael has made it home for the holidays. The hospital can be such a grim place during those times when you are used to spending happy times with the family. I am happy that Michael will be spending this time close to the love and support of the people who love him.

    Please tell him we miss him and are praying for him daily.

    Best Regards,

    Paul Adams
    McCormick, South Carolina
  • BMGky
    BMGky Member Posts: 621
    Glad Mike's home
    Thanks for updating us on Mike. Always look for a post from him or about him. I hope he is comfortable. We wish him the very best and may this Christmas Season be a remembrance of the promises of Christ's birth. BMGky
  • chemosmoker
    chemosmoker Member Posts: 501
    Hopper family,

    SO glad Michael is HOME!!!!
    Please send him all our love and I'm sure you'll let him know EVERYONE on this board is pulling for him.

    I can only now hope that all of yo get any many weeks or more of quality time together with dad and that he is pain-free and well-rested,

    I love Mike to pieces, and I love his presence and posts and have missed them SO SO very much for so long now.
    Thanks for the update as the silence is so empty, but I surly understand the workloads and having lives if your own to tend to, too.

    We are ALL here for you.
    May God bless you all and take Michael Home when it is his time.

  • chemosmoker
    chemosmoker Member Posts: 501
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  • Wife of patient 50378
    Lisha, Jennifer and Linda,
    I lost my father recently to a cancer as well. I took care of him for a week until he passed. It was one of the most difficult.... but also.... one of the most loving and caring things I could of ever done for my father. Enjoy the precious moments you have left and take the time to cry when you need to.
    Please give Hooper my best! Prayers to your family!
  • Heeran
    Heeran Member Posts: 171
    Thank you
    Thank you for the update. I'm sure as a caregiver you completely understand the different "hats" you have to wear while figting EC with your father. The person to listen when your dad was worried, the cook who provided food/nutrients, the person to take him to treatments, the person to help with personal affairs, and many other hats. But the best role I believe is being the best daughter possible to be there and be whatever our parents needs us to be at that moment. I regret a few things in life, but I'm sure you'll agree with me that however our parents depart from us one day, we will always treasure spending time and helping them the best we could. Wishing you peace,
    Caregiver to mother (T3N2M0) Squamous Cell
  • Denise54
    Denise54 Member Posts: 20
    Home Sweet Home
    Thank you for updating on your Dad. I'm so glad that he's home, which I'm sure is more comfortable for him. I will be keeping your family in my prayers. It's so difficult to be able to enjoy the holiday season like this, but I'm so glad that he's home for the holidays , surrounded by a loving family. Take things one day at a time, may the Lord bless your family and EVERYONE on here!!!

    Much Love to all,