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