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Let these stones be a witness to what we have done here this day.

Home. What’s next?

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Going Home
We waited for what seemed forever in the hospital room the day before we went home in anticipation that we would go home that day. Unbeknownst to us, an event earlier in the day had derailed that. I had nausea in the middle of the day and voluntarily asked to come off of the feeding pump for about an hour while everything settled down. It turns out it was nothing and we could likely have gone home, but the surgeon was in surgery until almost midnight and never found out that we were ok.

I caught him while he was making rounds in the middle of the night, 12:15 am after being in the operating room all day. I was walking the hall. It was a fun exchange, and I really like him. He laughed about me being out walking and I beseeched him to send me home. We struck a deal that he would send me home first thing in the morning if I tolerated an increased feed from the pump the rest of the night.

Done deal! Except the pharmacy that provided the take home pump couldn’t get its act together and we found ourselves lingering well past noon, after we had been dismissed by the hospital, all ports and lines taken out… Everything. Bonnie called multiple times asking what the hold up was, especially since they called the previous day saying the equipment was on “will call” and that I could have it as soon as I was released. They quit answering. Finally, my best advocate on this earth, my wife, went to the pharmacy and simply asked if they could deliver it to our house so we could leave. Simple answer, “Yes.”

We’re out of here.

Arriving at home was a special comfort. Everything is softer at home. The bed at the hospital, in which I refused to sleep the last two nights, is a series of three steel plates, connected with joints to provide head and foot elevation. It is covered by 2 inches of weak foam. It is incredibly hard. The pressure points on my back began to create a massive pain load, not from surgery, but from lying on what I began to refer to as a medieval torture device. In fact, though I had been off of my pain meds for days I began taking them again just to deal with the pain in my back and to try to rest. Even then, it was difficult.

The problem with arriving home was that, soft as home is, my back was still in massive pain. It would take another day and a half plus a maximum dose of pain meds to break the pain cycle and allow me to rest.

I got on the feed pump in a big way. For some reason, I have had a significant amount of nausea since surgery and not been able to get anything down or keep it down. In the hospital, when I got the feeding pump connected and it did not work, my digestive system rebelled, and it kept me for days longer in my room there, I hated it (the pump and my decision to have a J-Tube installed) with a passion. When I got home and couldn’t eat, I loved it with an even greater passion.

I was able to drink a couple of protein shakes (like ensure, but for diabetics) and that’s about it yesterday. I struggled with nausea all day. Even when I wasn’t consuming anything. That would have sent me back to the ER quickly if we didn’t get a handle on it. But the feeding pump put 1,500 calories in throughout the day and I was just fine.

In fact, I’ve gained weight since leaving for the hospital a week ago. That’s all down to the pump.

It’s not fun wheeling a pump connected to my abdomen on an IV stand around my house, but it’s a lot of fun being rested, hydrated, and nourished.

I’m grateful.

What’s next
Chemo starts on Monday at 8am. After the last couple of days recovering from my stint in the hospital, I wasn’t sure that I was going to be able to sit up for 8 hours at a time. As I write this in the wee hours of Saturday morning, I feel more confident. My energy is returning. My focus is returning. My desire to press on is returning.

Chemo is individual. They use standard regimens across the board and these are determined by some of the most advanced cancer centers in the world, MD Anderson included. One of the reasons that I have had some peace about getting started here instead of going home to Houston and attempting to work through insurance red tape in order to get in at MDA is that my Oncologist told me that the regimen we were using was prescribed by these cancer centers, MDA being among them. That we would be following the same path MDA would if I were there.

I know, Houstonians! MDA has special trials that I could be a part of if I were there. And I will, if this regimen doesn’t work. Then I have a compelling reason for the insurance company to let me go where I can get what no one else offers.

Back to Chemo. How each person responds is completely up to them. My oncologist described the four responses that happen in various degrees:

    • Chemo works, little side effects
    • Chemo works, severe side effects
    • Chemo doesn’t work, little side effects
    • Chemo doesn’t work, severe side effects

I grieve for the people who endure 3 months of chemo with severe side effects and it doesn’t work. How brutal.

Of course, we are counting on Chemo working for me. And we are praying for minimal side effects.

The Spiritual
Bonnie and I had a breakthrough time in the hospital in the last couple of days of our time there. God had been speaking to me as I walked through the halls of the floor where I stayed and in a moment of peace for the both of us when no one wanted our time, or our attention, or my blood pressure, or to give me medicine… God spoke to us through a beautiful conversation where we both shared what He had been saying to us individually.

I want to share some of the things God has taught us. I think it is important for you to see me wrestle with pain and suffering the way that we all do and not from a pulpit where speaking of God’s mercy while you suffer can seem unrealistic.

I want you to know that I am hurting. My life is completely different. It can’t be what it was going to be in my head. And God is good. He does good. You need to hear how I see these things.

In the coming weeks, things will not be happening so fast. Chemo will start. I will deal with whatever goes along with that. And there will be time to speak of deeper things. I plan on writing these things to you. I pray you will receive them.

How you can pray:

  • Pray for my ability to eat to return. For one thing I miss it, but also, it helps the digestive tract to have something other than the feed tube formula in it.
  • Pray for Chemo to work at the “miraculous” level. the Oncologist calls this “wildly successful.” I’ll explain the difference to him after the fact. Or maybe before.
  • Pray for the side effects to be minimal. I have suffered. I will suffer more, if need be. I just prefer to suffer less, if God would be so gracious.
  • Pray for my faith to continue to grow.
  • Pray for my family to remain strong.
  • Pray for financial needs to continue to be met (this has been happening in great and unexpected ways thus far – thank you for praying!)
  • Pray for my sleep to grow more “normal.” I’d like to be awake all day and sleep all night. It helps with your mental ability. I write this with the most energy and clarity I’ve had since I’ve been home, starting at 3:15 am on Saturday morning, because that’s when I woke up. The down side is that about 10:00 am, I’m going to want to sleep for about four hours in the middle of the day. Blah! Help me pray for some normalcy in my sleep.

Thank you in advance for your prayers. I am praying for you as I write this.

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