Holy cow! What a day!
At 8am on Monday, we woke up to quite the phone call. A social worker informed my mom that the army had made it's decision. The orders had been signed and Billy was going to be moved to Eisenhower Army Medical Center in Fort Gordon, GA. The army would evaluate Billy's condition, and then he would be sent to Colorado for treatment.
In any normal life, with any minor medical issue, I guess such a phone call would make sense. But after yesterday? When the move from the ICU to the 5th floor wore Billy out so much? When the move was painful and difficult? If an hour-long move from one floor to another took so much out of him, how could he possibly be ready to move hundreds of miles to another medical center? Last night, we had decided to start chemo to try to knock out some of his cancer. If that could happen, his pain could lessen. Maybe he could start to hold down some food. And then, hopefully, he'd be ready to move. But not yet. He didn't seem ready.
It was a shocking message in and of itself. But it was a jolting, abrupt message early in the morning in this strange new world--a world that doesn't seem to make any sense. Sometimes (in my "normal" life), I like to snooze when my alarm clock wakes me. But I've never once set an alarm here. I've gone to bed at 2 or 3am, and I somehow wake at 8am every day. You wake up, and your mind starts going. You realize that life isn't normal, and you're not in your own bed. All of a sudden, cancer entered our world, and life seems like it doesn't make much sense anymore.
Needless to say, that 8am-phone call woke me right up, even after going to bed last night at 3am. We got ready as quickly as we could, so we could make it to the hospital by 10am to see Billy and figure out what was happening.
We got to Billy's room, and he was as confused as we were. Right away, he asked, "Why are they talking about moving me? I thought we were staring chemo." We had no idea. And it was a bit disorienting. "I don't get it," he continued. He pointed to his chest. "We had this port put in a couple days ago, so that we could do chemo, right?" And we agreed. [I'll explain this in a minute.] "And that's why I got the chest tubes, and it's why I was moved up here [to the 5th floor tower]." It was more a statement than a question, but we nodded anyway. He was right. All of the physical distress--the weariness from moving, the pain of moving, the installation of the port--all of that was so that he could take chemo.
And then to be told that he was moving to another facility now, without any chemo, didn't make any sense to us. His pain had just been stabilized. We didn't want to jeopardize that again before we tried to use chemo to knock out some of the cancer cells.
Allow me to pause the story for a sec, while I explain a couple of things...
The purpose of the port is to allow delivery of chemotherapy to the blood stream. The port deposits the chemo to the inferior vena cava, just above the heart. The chemo gets mixed with a large volume of blood right away and circulates throughout the body. The chemo attacks all of the cells in the body (not good), but it attacks the fastest-growing cells the most. Since cancer cells grow the fastest, they take the biggest hit. But the rest of the cells take a hit too. The hope is that the body regenerates the good cells, and the cancer cells stay dead. I don't understand the whole thing completely...but in some cases, it really works.
Anyhow, the port gets put in for chemo delivery. But there are risks to inserting the port. One of them is "pneumothorax". It's rare, but it happened with Billy. In normal situations, there's a lining around the lung. In the space between the lining and the lung, there's fluid. When pneumothorax happens, air gets in that area around the lung. So when the diaphragm moves to bring air into the lung, the pressure doesn't change like it should, and air can't come in the lungs. (When people talk about lungs "collapsing", this is what they mean.) It's not a good situation. In Billy's case, this happened. So the medical team here had to put in two chest tubes (very painful) to allow the air to get out, so that Billy could breathe. During the first night, he was on a ventillator. Over time, that was stopped. Eventually, one chest tube was removed in the ICU. The other was removed this morning!
The move out of the ICU was always planned. But the move up to the 5th floor tower was so Billy could begin chemo. Moving him out of the ICU yesterday was good news! But it was a tough day, and it wore him out! He was exhausted and in pain for a lot of the day. It wasn't until late yesterday evening that they seemed to be able to regulate his pain medication, and he was able to sleep.
So back to the story...
The phone call had informed us of a move to Fort Gordon. Why move there, when Billy had already been evaluated here? That's where the presence of Billy's friend, Nate, was invaluable. Nate is an "army insider", currently on leave from Germany. As we asked questions, Nate was able to explain the "army way". "It's not that the army doesn't trust the doctors here," Nate said. "It's just that they have their way of doing things--the army protocol. And it's in army protocol to move Will to an army facility to have him evaluated by army doctors. And then the army will decide on the best place for his care." It makes sense. As the army sees it, Billy is their responsibility, so they're going to handle his care.
But they won't do it blindly, without regard to Billy and what he needs. Together, my mom, Billy, Nate, and I talked with the patient care facilitator and the social worker about the options. We talked about Billy's pain and his current state. His stomach is currently shot. The cancer is so strong, his stomach isnt working. It's building up a lot of fluid, and that's causing a lot of pain. We can address the fluid. The pain may go away for a time. But if we don't address the cancer, the fluid will keep coming back. And so will the pain.
We knew a move to an army hospital would happen eventually. But the most pressing issue was dealing with the cancer. If we could just knock some of it out, then maybe we could get some of the fluid to go down. Maybe we could get his stomach to process some food. And maybe some of his pain would go away. I say "maybe" because chemo isn't guaranteed to work. A lot of times, it works. But there's no guarantee. And there are risks to consider.
However, at this point, we haven't gotten very far. Billy's pain has been regulated, but we have to do something about the source of the pain--the cancer. And the only thing we have is chemo. Billy's doctor said he would be okay with moving Billy after one round of chemo, as long as he would be moved to another medical facility. So Billy decided we should go for the chemo. Wait on the move. See what happens.
At this point, there's so much more I could write about the details of the day. Instead, I'll give a few brief summary.
More friends came to see Billy today (Monday) . Some of the same visitors were around...
- Kelsey (from D.C.)
- Nate (from Germany)
- Melissa (married to Tyler, who is on his way back from Kuwait)
- Judy and Doug (Melissa's Parents)
- Jill (Billy's and my mom)
- me :-)
We also had a few friends fly in from Durango, CO...Debbie and Erin. Erin and Billy have been close friends since high school, and Billy has been an honorary member of her family ever since.
Also, once again, Laurie and Adrienne did a stellar job as our support team!
So how is Billy?
Tonight, after everyone left, I asked Billy if there's anything he'd like to share with the world. "Today was a good day," he said. "I felt really good, and I feel like we're making progress." I asked what he meant by that, and he referred to the reduction/regulation of pain. [He got a PCA today...a device that allows him to control the delivery of his pain medication. And that really helped!] I asked how he was feeling about chemo. He knows it's a poison, and he wasn't wanting to do it at first. "You do what you have to do," he said. [Such an army mantra!] "We'll get through this!" His attitude is so great!
As he sat up tonight to try to grab something on his own [he's still got his independent spirit...and friends who know either one of us will know exactly what I'm talking about!], I told him, "You know, when you get through all this, you're going to have to do a ton of situps to build up your abs again." "Oh, I know," he said confidently. And he's still talking about running a marathon with me sometime. Maybe not in the next nine months...like we planned to do together next June in HI...but eventually. It's a good sign. He's got a lot of fight in him.
And he's right. Today was a good day! Despite the difficulty, there was fun and laughter. Billy was punchy and witty. He was joking around and always ready to fight back. It was fun to see family and friends "messing with each other." It sort of feels normal.
From Left: Erin, my mom, Debbie (Erin's mom), and Billy. A few laughs and smiles after my mom ambushed Billy with a paper airplane (made from orange tissue paper).
The joking and fun and time with family and friends feels almost normal...except that all of it is happening in a hospital.
So what's ahead? When will Billy be moved?
We're not completely sure. He'll be at this hospital until his chemo treatment is finished. He's on 3 kinds of chemo. The 1st bag is done in an hour. The 2nd kind takes 6 or so hours to finish. And then there are 4 bags that take 24 hours each. He started the 3rd kind (4 bags) at midnight tonight.
At some point, the army will have to evaluate Billy. And then he'll have to establish a plan for long-term treatment somewhere. We're just not sure where. More to come on that...but he'll be here for at least 4 more days.
I'm beat...gotta head to bed. But I wanted to share one final note. In a world that so easily feels chaotic and out of control, I often feel powerless. A friend shared something that spoke to me today, so I wanted to pass it along to you.
What Cancer Cannot Do...
invade the soul
steal eternal life
conquer the spirit
invade the soul
steal eternal life
conquer the spirit
Thank you for praying and supporting and loving and just being in it with us!