Friday, November 30, 2012

The Roller Coaster Ride

This really is sort of like a roller coaster ride.

I seem to be over the blood clot. I am still on warfarin/Coumadin, a very common blood thinner, and I will need to be on it for six months. I'm not even sure when I started on it. I'd guess this blog is probably the best record of that I have!

My leg feels fine, and I'm trying to exercise it without over-exercising, which is how I got the blood clot--three intense exercise days in a row. (That doesn't make any sense to me or the doctors. Exercise should help blood flow, not create a blood clot. Nonetheless, that's what happened.)

This last weekend (Thanksgiving weekend), however, I came up with something new.

The last doctor visit, they increased my steroid dosage to 15 mg, from 7.5, because I had Graft-vs.-Host of the skin in several places. My forearms looked awful, the worst looking rash I've had from GVH at any time. My wife and I didn't even notice the rash until the nurse practitioner asked to look at my forearms.

They told me to drop back down to 10 mg when my skin cleared up.

I sent them an email on Wednesday, the day before Thanksgiving, saying that my skin was almost completely clear and that if it remained so over the weekend, I'd drop to 10 mg on Monday.

Then Friday night happened.

I woke up at 2 a.m., and my neck itched so bad I couldn't go back to sleep. I checked the mirror, and there didn't seem to be any rash. I wondered if it were an allergic reaction, so I took Benadryl. I also slathered my neck in lotion to try to relieve the itch.

Benadryl is sleep magic for me, so I had no problem going back to sleep a few minutes later, though my neck still itched. It itched when I woke up, too, though not as bad.

I made it through the day fine, but Saturday night I woke up at the same time. This time most of my body itched. I checked the mirror for indication of a rash, but there was none, so I soaked myself down in lotion and went back to bed.

Sunday a GVH-style rash had kicked in. I switched to the steroid cream, but by the time my wife came home--she'd been visiting her sister in Colorado--the rash was extensive enough to be alarming. I'm supposed to go to the emergency room if a rash covers more than 50% of my body. I was at 30 or 40%.

She applied the steroid cream more thoroughly than I had.

During the day, however, I had figured out the problem. I hadn't really experienced anything like the rampant itching before, so I got to thinking about what I was doing different. Then I remembered I had changed my body wash on Friday. I went and got it out of the shower and threw it in the trash.

Monday, my skin was almost completely clear.

There's always something.

Secret Church

Note: The idea for "secret church" came from David Platt and his church near Birmingham, AL. (We highly recommend his book, Radical.) You can read about what it is here. We do secret church shorter and more often than they do.

Today is "Secret Church" night at the Buzz in Selmer. I don't know if we'll get any of the local residents out, or if there will only be friends attending from Rose Creek Village, but the last time we did secret church, it was phenomenal. The presence of God came down, and we had an incredible, joyful, inspiring time, despite the fact that I taught for 90 minutes. (I keep a careful eye on my audience. If they look bored, I wrap up and quit. In this case, even the teenagers never took their eyes off me. No one was bored.) Even after prayer and 90 minutes of teaching, there was Q&A and discussion after. A few hung around to chat even after that.

We went to a couple apartment complexes in town here with flyers and invited people, but that has got to seem scary to local. People are really loyal to their denominations down here in the Bible belt. They'll cooperate with other groups, but to just show up at some meeting called "secret church" having no idea who'll be there with you ... that's not the kind of invitation that is likely to get accepted in McNairy county.

Tonight we'll be talking about the relationship--contrast, rather--between the kingdom of God and worldliness. I'll take everyone through some important, applicable Scriptures, and then this week will be much more discussion than monologue.

Some subjects should not be taught by just one man. Instead, the people of God should talk and wrestle with the subject together, until God gives them something clear.

We western Christians--oh, how we love logic--like to think there is a certain answer to every theological question. It's not true. God answers our questions in whatever way will move us to live the way we're supposed to live. The very purpose of the Scriptures, says the apostle Paul, is to 'thoroughly equip us for every good work' (2 Tim. 3:16-17).

How does one live as a citizen of the kingdom of God and avoid worldliness? The answer for those of us at the Buzz tonight may not be the answer you get. It certainly will be different from country to country, but the answer also differs depending where we are on the path of righteousness. God's concerned that we're taking the next step. It really doesn't matter whether or not we have a perfect, or even good, understanding of what the end goal looks like.

Ah, enough teaching. I have to go study for tonight.

May God make his face to shine upon you!

Wednesday, November 21, 2012

Out of the Wheelchair

The nurse practitioner at Vanderbilt told me that it can take weeks or even months for the pain of a blood clot to go away. Thank you, God! It's only been a couple weeks. I can walk a half mile or so again. Pain greatly reduced, almost gone.

I learned a big lesson a week and a half ago. Let's see, that would have been a Thursday, so it was Nov. 8.

My wife and my oldest daughter went to a medical missions conference in Kentucky that morning. I've been opening a new business, and I foolishly cared so much to make the business work that I expanded our hours to get it rolling. As a result I had several new employees serving coffee.

My daughter is terrific at making coffee, being relaxed with customers, training the new employees, and volunteering to help whenever needed. But she was in Kentucky! The only person I had for the afternoon was my secretary from my other business, and she had never used any of our machines before.

There was no one but me to help her, and I was getting around in a wheelchair or rushing from one chair or couch to the next one, keeping my foot in the air.

No problem. I had the wheelchair. I went down to "The Buzz" with her at noon to train her.

The problem is, I couldn't find any energy. That happens sometimes, and it really happened that day. As soon as I was confident she could run the machines, I went out to my car. I had a sleeping bag in the back seat, and I thought I would just nap for an hour or two. It was perfect weather for it, and my car was parked in the shade.

The day before, however, I had come up with the worst ingrown toenail of my life. Both sides of the toenail on my left big toe had become extremely painful on the same day. I think the last vestige of the on my toenails got me. The toenail kind of shattered at the tip when the chemo lines got to the end.

I'm getting used to pain, so I had gotten in there with fingernail clippers and a file, and I had taken care of the problem ... I thought.

When I got out to the car, my toe was hurting so bad that I couldn't rest. My other leg was also hurting because of the blood clot. I had gotten up on my feet too much while I was training Alaina.

I worked on my toe again. I had brought my clippers and file along, knowing there might still be a problem. My poor toe was so sensitive that the first time I touched it, it just jerked uncontrollably and shook like a scared puppy. After a few minutes, though, I got in there and cut the nail away from the sides of the toe.

I was so, so tired at that point. I left my bare foot out from under the sleeping bag to stop hurting in the cool air, and I laid back to sleep.

Tap, tap, tap.

My secretary was tapping at the window. Several customers had come in at once, and the steam spout on the latte machine just broke. I had a second one, but she was having problems working it.

I looked at her and said, "I don''t know if I can walk."

She's a trooper, so she just turned and went back inside. I gingerly put my sock and shoe on, left it untied, and limped through the back door into the coffee shop.

I had never used the second machine. It was new. I had trained my secretary on the one that broke. She already knew how to make specialty coffee drinks, and she was pretty good at frothing the milk for them. She just needed to know how to use the machine. I had been so tired that I had just left her with the instruction manual for the new machine, figuring she wouldn't need it anyway. We get very few customers because we've only been fully open as a coffee shop a couple weeks.

That day, though, we got several at once, the first machine broke, and she wasn't quite figuring out the second. I knew I needed to help her.

Like I said, it was a new machine. I'd never used it. None of my other machines had any caps or ports that I couldn't just unscrew and open.

This one did.

I opened it, and it instantly steamed and scalded my entire right thumb. The pain was intense.

I pretended like it didn't happen.

I turned off the new machine, and I took the broken machine to the store room. There we had a third machine that is my favorite. My daughter had me get rid of it, though, because she says it overheats and shuts down after just a few drinks.

I just needed a few drinks. On a machine I'm familiar with.

I set it up in a few seconds, and we whipped out the coffees. The customers thanked us as though we were actually competent workers, and they went on their way (with very good lattes and cappucinos).

I excused myself, and limped slowly out to the car. I wanted to run because of the pain in calf from the blood clot, but I couldn't because of the pain in my toe from the ingrown toenail. I climbed into the back seat, wrapped my hand around a bottle of cold water that I had in the car to stop the pain of my scalded thumb, and fell into a deep, dead sleep; not without first praying, "Please stop hurting me."

That night, I slept very little because my thumb hurt. I had apparently fixed the ingrown toenail well because it wasn't bothering me.

It's probably a good thing my wife was in Kentucky. I'd probably have kept her up all night. On the other hand, I was really missing having her there taking care of me. I didn't tell her anything because I wanted her to enjoy her time at the conference.

On Friday, Nov. 9, I just stayed in bed. My wife and daughter came home early from the conference. They felt they'd gotten all they needed from it.

Over the weekend, I called all my employees and laid them off. I told them that I was closing the coffee shop portion of the business for good. We would still rent The Buzz for events, and we would still do our own events—whenever I have the energy for them—but we wouldn't just open for coffee anymore.

I told my employees. I told my friends. I didn't tell anyone else. I stayed in bed until Tuesday morning. Then Tuesday morning, I put a note on the door of The Buzz apologizing for being open so sporadically.

Tuesday night, Nov. 13, I didn't open The Buzz for our chess club, either. I didn't show up. I didn't send anyone down there. As I write this on Nov. 21, I haven't update the web site either (

It may have been irresponsible, but it was restful.

On Thursday, I got up early with my wife, and we went to Vanderbilt for my regular bi-monthly checkup. My forearms chose that day to flare up with GVHD. They were red and spotted. They looked terrible. I'd had no rash like that in months.

Dr. Jagasia kindly raised my steroid dosage and told me we wouldn't go back down to 7.5 mg at all. We'd do 15mg for a few days till all my GVH clears up, and then we'll settle in at 10mg. I seem to do well with that. He said as soon as my body is settled down and more rested, we'll begin tapering off Tacrolimus, which is the last immune system suppressor I'm taking (except the steroids).

My wife loved Dr. Jagasia's quote. "Normally we would taper off the Prednisone first, but you clearly are not interested in that."

He was fine with that. He said some patients take years to get off the steroids.

I had spent all week asking God what I should be doing with my time because obviously I'd gotten off track with the business. I felt like the answer to that question was, "I give you things to teach, and you don't do it."

I realized that when I teach the Bible, I've been acting like the teachings were my word rather than the Word of God. I love teaching, but I only set up times to teach when it's convenient for everyone at the church. Our church is busy, so that's not a lot.

So on Friday, I sent a text to the whole church telling them I was opening The Buzz for "Secret Church." You can read about the original Secret Church here.

Their description is:

Right now, around the world, millions of Christ-followers are meeting in secret places, worshiping in hiding, practicing their faith behind closed doors. If exposed, they face prison, torture, even death. Yet their devotion to God and His Word are unwavering, even heroic. They are our brothers and sisters in Christ. We must learn to take our God as seriously as they do.

David Platt, the pastor of the Church at Brook Hills, near Birmingham, does a secret church teaching every few months. I'm not David Platt, though I am able to captivate an audience and notice if I'm not captivating them, so I kept my "Secret Church" teaching shorter than he normally does. I also am going to do it more often than he does, which necessitates being shorter as well.

About 40 people showed up last Friday night for that. I taught from a wheelchair, even though I could walk pretty well by then (4 days ago). I can walk pretty well, but I can't stand still very well.

It was awesome. We prayed for some specific persecuted believers in Iraq, and then I taught for over an hour, which is longer than I really ever teach. I would have cut it shorter, but everyone was riveted. There were even teenagers there, and they never took their eyes off me. The whole group was riveted, and we had a great Q&A and discussion time afterward. Most of us didn't go home until 10:30 or later, some three hours after we started.

I've had several friends who weren't there approach me since, telling me that they had talked to others who were. They told me that after hearing about it, they wanted to know when the next Secret Church would be.

I'm going to do it every Friday that I can, and I'm not going to do it when I can't.

I have a tape—I guess it's called a podcast now—if any of you want it. No charge. I'm not trying to make money from such a thing. I have to warn you that it's a 47MB file. I'll try to get it up on my podcast page soon.

Hmm. I can probably do that tonight.

As soon as I upload that, I'm going to start on Yippee! I Have Leukemia, the book. It will be based on this blog, so if you have read the blog the last year and a half, and a LOT of you have (I never would have dreamed), then the book will be redundant. However, it will be shorter than the 250 blog posts or so that I've written. You may enjoy it as a recap. I know one friend of mine told me about his wife finding the blog, then reading through a lot of posts, laughing out loud over and over again.

Yeah, in a blog about fighting leukemia.

When we went to Vanderbilt last Thursday, my wife and I were commenting about what fond memories we have of driving down Blakemore Avenue toward the hospital. I was usually horridly sick when we made that drive, usually early in the morning, sometimes because of an emergency, but our memory of Nashville is a good one. My wife and I got closer, and we enjoyed the adventure together. We laughed a lot, and we were well taken care of by the greatest staff of nurses and doctors ever put together. (I don't have enough experience with hospitals to say that with any authority, but surely it's impossible to have a better hospital staff.)

I say that with some emotional pain because my daughter was explaining to me, just yesterday, that it was not a pleasant experience for her. She was only in Nashville with us about half the time, at most, and it was a very rough time for her.

Well, I'll close with that. I'm feeling as good as I've felt in a long time, and I'll be doing Secret Church again this Friday, Lord willing.

God bless you all, and thank you to all of you who have prayed or even sent me positive thoughts. I think blessings are both scriptural and quite real in their power, so thank you even to those who are not Christian but who have sent me blessings by including me in their thoughts.

May the road rise to meet your feet; may the wind be always at your back; may the sun shine warm upon your face, the rains fall gently on your fields, and, until we meet again, may God hold you in the palm of his hands.

To you who know the great God of Israel, Creator of all things, may the Lord bless you and keep you; may the Lord make his face to shine upon you and be gracious to you; may the Lord lift up his countenance on you and give you peace.