For Better, For Worse

So I'm sitting here in the UT Medical Center's Vascular Center waiting with my husband, Ben. This morning, he's having a central line (also called a Hickman catheter) surgically inserted into his chest.

Central lines are used for administering things like chemotherapy, or in Ben's case, IV hydration and nutrition. Central lines are considered long-term placements and can be in place for weeks or months at a time.

Over the summer, Ben, with his doctor's permission, weaned off a very powerful pain medication he had been taking for years. He was concerned with its safety and efficacy. Ben's doctors supported his decision and gave him some short-term pharmaceutical help while he went through withdrawal. Even with the help, Ben's withdrawal was horrible. For the first 2 weeks, he marked off each day on a piece of paper, like someone on a deserted island might do to keep track of the days. We stayed in near-constant prayer during that time. Every small relief was a praise.

Once Ben normalized, he was amazed by how much better he felt. As he suspected, the medication he had quit didn't help much with his chronic pain. He felt as though he could manage without it. He started feeling so good, he even made plans to finish college.

Unfortunately, one of the positive side effects of the pain medication was that it slowed down his bowel motility. Ben has short-gut syndrome, which means that he doesn't have a lot of surface area in his intestines for nutrition to be absorbed. Maintaining weight and hydration can be very difficult for him because of it.

Despite his best efforts, Ben plummeted another 10 lbs. after discontinuing the pain medication. Since he never fully gained the weight back he lost after having the flu in January, Ben and his doctors decided that having a line put back in for awhile would be the best. That way, he could put on weight and give his body some help while his bowels readjusted.

When I met Ben, he had been battling Crohn's Disease for years. Long before we were married, his colon and most of his small intestine had been removed. The Crohn's is under control, simply because they have cut out just about everything that could be affected.

Ben has an ileostomy, meaning that his waste is expelled through a stoma on his lower abdomen. It collects in a disposable bag that can be emptied and is attached by a special paste.

When I tell you that Ben is a warrior, I am not exaggerating or heaping hyperbole on him because he is my husband. He is the toughest man I know. One surgery had him literally staring at his own intestines under a vacuum seal while he waited for another procedure. A more difficult surgery prevented him from eating anything by mouth for five months. Five months. The worst thing about liquid nutrition, he said, is that it doesn't prevent you from feeling hungry. Your stomach still growls.

If you take all the time he's spent in the hospital and add it together, it would equal more than a year. And most of it happened before we met.

On our first date, Ben said to me, "Look. Something's bothering me, and I want to bring it up right away. My teeth are in bad shape from the Crohn's and all the medicine. I'm really embarrassed by it."

I suddenly realized that he had never given me a full-tooth smile. As I watched him speak, I noticed that several of his teeth were broken and jagged. He had endured so much and didn't even have the comfort of a healthy mouth. I could never match his bravery. A wave of admiration swept over me.

"I'm from Tennessee," I told him casually. "I'm used to it."

Before our wedding, Ben went through another very uncomfortable procedure and had the rest of his teeth extracted. It was a very good thing to do, because his body was constantly fighting infection from decaying teeth. He's worn dentures for years, prompting all sorts of unrequested mailers for Jazzy chairs, bladder leak products, and the like to our house. I guess we're the youngest senior citizens on the block. I'll take that as a compliment.

Once his central line is put it, his doctors will create a special mix of liquid lipids, fats, and proteins called TPN (total parenteral nutrition). It looks like milk and comes in an IV bag, just like normal saline solution does. He'll also have that, which will help hydrate him. A home health care company will deliver all of this to our home weekly. Ben is so well-acquainted with this procedure that he actually hooks up his own IV bags. He was on TPN for an extended amount of time a few years ago, so I'm familiar with it, too.

Ben's doctors only want him to keep the line for the shortest time possible. Any central line is susceptible to infection, clotting, or creating scar tissue. We have to keep a close eye on it.

He's back in the room now. Things went well with implantation. He's groggy from the drugs but currently eating Baked Lays and a turkey sandwich. We'll go home and rest today. Thanks for keeping me company.

Ben came with a lot of baggage. (So did I.) It was so much baggage that the people closest to me were understandably concerned when we decided to marry. I knew I was taking a big risk.

The best analogy I can come up with is this: have you ever seen an action movie where the hero is trying to rescue a precious jewel from the bad guys? Along the way, the jewel gets dropped into crocodile-infested water, snatched back right before it falls into a volcano, and wrestled out of the villain's hand while the hero is dangling off a train car. There are many close calls, but our hero wins out. At long last, he restores the jewel to its rightful place and saves the day.

Sometimes, when I watch movies like this, I imagine that I'm the hero, and Ben is the jewel. Other times, I see Ben as the hero, and his health as the jewel. The real story, however, is that God is the hero, and Ben and I both are jewels. In a perfect world, the jewel would have never been stolen in the first place...but we don't live in a perfect world. The story of its return to safety can't be a short and easy one. Where's the fun in that?

I don't know why the chapters of our lives contain so much harrowing excitement. I am confident, however, that there is a purpose and a reason for it.

Just like the hair-raising scenes in the movies, the only way I can watch some of the adventure is with my eyes firmly shut. As long as I'm praying while my eyes are closed, though, I'll be ok.

December 11, 2018