Thursday, February 2, 2012

Day 16: Going Forward

View today from my Vanderbilt window
Well, this is the time to go forward. Things are definitely healing each day rather than growing worse each day. They stopped feeding me by IV last night after about a week on their TBN (Total Body Nutrition.)

The frightening thing about going back to eating is how my body will respond. Indigestion, painful stomach cramps, or diarrhea that causes hemorrhoids to flare up. I've been taken it very carefully: soups with rice or noodles, cooked vegetables (no raw until I have blood counts), and the occasional Ensure™ drink. I don't get full because getting full hurts, and it takes a long time to relieve.

But that's "only" frightening. Taking it careful makes it very likely that my stomach won't experience those things, and the ability of the nurses to manage nausea is almost magical.

A New Beginning!

The really nice thing is that every step forward is a real step forward. That hasn't been true for months. When my blood counts settled back in October after the 2nd round of Chemotherapy, we all knew that was just until next round of chemotherapy. If I made some walking or jogging progress between rounds of chemo, I knew that was conditioning I could not hold onto.

So ever since the transplant, I've been telling the staff in the hallway, when they see me trudging, barely enough energy to push the pole, "I'm training for a 5K!"

It's no longer just exercise to keep the lungs healthy. I get to keep the benefits of the exercise now.

Day zero was a big turnaround. We went from treating leukemia by destroying leukemia cells (and a lot of other cells with them) to managing this new immune system as it grows so that it learns to do its job without burning down the hen house. (In that metaphor, I would be the hen house.)

Moving to an Adult Diaper: Depend

The company is Depend, by the way, not Depends. Here, I have the picture to prove it:

I have to tell you at least a couple humiliating stories.

On some night, at least two nights ago, I woke up needing to go to the bathroom. I went in the bathroom as normal, but I realized that, once I got there, I could not have avoided peeing one second longer.

That made me a little concerned, especially if you know what "racing to the bathroom" means in a hospital on when you're attached to an IV Pole with several pumps.

  • Sit all the way up as you get out of bed, but don't stand up in order to make sure I don't pass out.
  • Stand up, holding onto something that does not roll, until you know that you are not light-headed.
  • Roll IV pole close enough to bathroom door that the tubes will reach through the door and still let me reach the toilet.
  • Grab between four and seven tubes that are looped on the IV Pole so as not to drag them on the floor.
  • String out the tubes along bathroom doorjamb, then close door on them, making sure they don't overlap and "occlude." You'll get a lot of beeping from the pumps if that happens.
  • Only then can you turn from the door to the toilet, and it has to be the right way or you'll wrap yourself in your IV tubes.

Well, as you may be able to guess, it happened ... At night, thank God!

This is the IV Pole and lines I'm talking about.

I got up, did all the things I just described until I was grabbing the lines that I had looped over the IV Pole. They were tangled, and I heard from my body, "Houston, we have a problem!"

I skipped all the other steps. I tore the bathroom door open, and pulled my IV Pole up into the bathroom behind me, leaving the door wide open.

Thank God for pajama bottoms. They were flannel and absorbent. Not a drop reached even knee level, much less the ground, and I made almost no mess at all transferring from filling my pajamas to filling the toilet. I then rolled up the underwear in the pajama bottoms, put them in the dirty clothes, then used wipes to get the tiny mess I left.

I got off easy, but I was taking no more chances.

I called the nurse for an adult diaper.

It's so sweet how these beautiful, young ladies—for that is what most of these nurses are—have the ability to casually tell you that yes, they do have an adult diaper, and they will get one for you. No giggles or anything. (The rest of the nurses, the ones that aren't beautiful young ladies, are either men or beautiful, but not young, women.)

Over the course of the next few hours, I found out that as soon as I started walking toward the bathroom, I would lose all continence.

I filled four diapers this way. Waddling to the bathroom to change them is really not that uncomfortable a process. They do a great job of keeping you dry.

Take heart, parents, our kids aren't suffering in their modern, skin-protective diapers.

Ah, but the other part wasn't so easy. I called these diapers because they are diapers; disposable, adult diapers, but diapers nonetheless. After you throw one away, you have to put another on! I put the first one on by myself, but I couldn't get it tight enough to feel good about it. I knew for safety's sake I was going to have to humble myself. My wife was all too delighted to change my diaper for me, the perfect blend of exceptional graciousness and twinkle in the eye.

The next night we resolved that. By providing a urinal at the bed that can be emptied easily. I don't have to walk to go now.

We also resolved the diaper change issue by buying Depend™ Pull-Ups. I'm a big boy now!

They think this is caused by a urinary tract infection, which hopefully is being treated by a medicine they are giving me. The incontinence has diminished. There was also a little blood, which alarms people but happens with most bladder infections. That's diminished quite a bit. Finally, there was tissue, skin tissue, like what you'd peel off your shoulder after a sunburn, that I was passing. That's gone.

This urinary infection and the pseudo-boil on my right arm are probably what we're watching most. Everything else is healing rapidly, and even those two seem to be healing day by day.

A Spiritual Lesson on Humility

It doesn't matter how often I teach walking by the Spirit, I eventually start substituting good things for spiritual things. I was working hard at keeping up on the Through the Bible in a Year Commentaries, but I ended up, one more time, getting my eyes on my duties rather than on God.

Last week a friend asked me for three prayer requests for their prayer team. Immediately, I typed, "#1, that I can keep blogging!"

I then thought about the things that would be more normal prayer requests in my situations. I told her that #2 is protection from fevers, and #3 is protections from mucositis and all its complications.

Then I realized the most imporant one of all at the moment, which is that the new stem cells engraft in my bones.

I felt somewhat proud about choosing to make some tiring, spiritual service in something I'm sure God has told me to do. The feedback from those who read the Through the Bible in a Year blog is incredible. I've gotten some of the best letters from that particular enedeavor versus all other's I've done, and it's only a month old!

But this week, I couldn't do it. I made a standard form for each day and let the readers discuss among themselves.

Then God pulled me aside to remind me that there's only one in charge, and I'm not him.

The warm side of that story? I got back out of myself, and started communicating with other patients. Even if it were just a good morning as we passed in the hall or a purposeful attempt to give a few extra seconds. This first day, just since my reenlightenment on the matter, I got in a great discussion this morning with the wife of a patient heading toward transplant. Then another worker came through the room anxious to talk about her life. It was a delight. I gave her one of my books.

There are so many people who live like this all the time. Free in their spirits, following God.

Ministry is always the overflow of fellowship with God. We must never make our ministry "ours." We don't work for God; God works through us. Make your ministry your own, and you will be taking it away from God, not from anyone else.