Monday, December 17, 2012

Stem Cell Transplant Plus 11 Months: Things We Face

I subtitled this "Things We Face," but I can only speak for what I face, of course. Still, it is the sharing of our individual experiences that lets us know what we face.


I've had an ongoing problem with hemorrhoids since about two weeks after the transplant. Today makes 11 months exactly, so it's been 10 1/2 months. The summer was particularly bad, requiring pain pills every day. (I've gotten advice from every sort of doctor that could have an opinion on how to treat hemorrhoids, including friends who are amateur naturalists--plus one professional naturalist. I'm an expert now.) They haven't been bad except for one week the last three months, but most bowel movements are at least mildly painful. Each trip to the bathroom is like an adventure. It may go smoothly, with no problems, or the trip may result in a few minutes of treatment so I can face the rest of the day without walking funny.

Okay, I got the gross subject out of the way. I don't have any other gross subjects.

One more note, though. I can predict how much hemorrhoid treatment I'm going to need by how much lip balm I need. If my lips are so chapped that the skin is peeling off of them, then I'm going to have problems in the bathroom, too. If I'm leaving my lip balm at home because I don't have to think about my lips, I'll have a great day at the other end, too.

Dry Skin

The last month or so, I've had really dry skin. That's probably the result of winter setting in (combined with chronic GVH of the skin). Tennessee's very humid in the summer, but in winter the air is much drier. I spent a winter in Alaska when I was a much younger, much healthier man, and it was so dry there that most of us were using lotion on our whole body every day.

As a note, the colder it gets at night, the less water there will be in the air. As a result, winters are always less humid than summers.

Anyway, my skin is really dry, requiring two to three full-body applications of lotion every day. I can get away with one application per day, but when I do, even rolling over in bed is irritating and painful to my skin.

Even with multiple applications per day, I flake skin from my eyebrows, ears (my earlobes are peeling!!!), the edges of my scalp, and all over my beard, whether I shave it or grow it. When I change my clothes, the act of pulling clothes away from my waist sends a small shower of flakes down onto my pants legs.


I've managed to go through this whole entire treatment, from the very first chemo, with almost no nausea at all. That remains true. Most of my formerly leukemic friends did not fare so well. I mention this for them. I've probably thrown up 6 or 7 times in a year and a half, including a couple weeks ago when I waited too long to eat breakfast. I was really lucky on this one.

Burning Eyes

Unfortunately, this is a new one, less than a week old. It only burns when my eyes are open and exposed to light. However, the burn just gets worse and worse, no matter how much I blink. I don't know how much worse it could get because there comes a point I simply cannot keep my eyes open.

The first time it happened, I was leaving WalMart. It caught my totally by surprise. The pain increased rapidly. I backed my car out of the spot I was in so that the sun would be shining on the back of the car rather than the windshield. I then sat in the car for about 15 minutes as the tears ran down my cheeks and I sniffled and blew my nose like I was at a heart-rending movie. (I cry terribly at sweet or romantic movies. It's embarrassing.)

I went someplace dim, and the pain slowly subsided over the next four hours.

It's looking to me like daytime with the sun shining is the biggest problem. (No, I do not look directly at the sun ... ever. I only glance at sunsets because looking at a sunset means the sun is shining at my face. I only look at sunsets with sun block on, and I only look briefly at sunsets.) If it's bright out, my eyes will soon be burning.

This has only been true for five or six days, but it's happened every day except one really cloudy day. Two days ago, we left Flagstaff in terrible snow. However, by the time we got to Kingman, AZ, the sun was shining. My wife returned to driving, and I drove along with a light blanket thrown over my head, and I talked with people on my cell phone under the blanket.

I still have to email Vanderbilt about the eye thing. Due to participating in a study, I already take the medicine that treats GVH (Graft-vs-Host) of the eyes every day. I have been since the transplant. The drops REALLY help. I only found out yesterday that those drops provide almost instant, though not complete, relief.

Ingrown Toenail

The very last chemo line to grow out led to an ingrown toenail. I'm on a trip to California—well, we got here on Saturday—but I saw my family doctor before I left. He told me it's not that the toenail is ingrown. It's that the skin around it is infected, which is what is creating pressure from the nail.

Chemo lines on the big toe.
So he gave me one more antibiotic to take. It hasn't really helped, though it hasn't gotten worse. He also recommended buying shoes a half-size bigger and wide. That did help, and I like the shoes, too. If you've had an ingrown toenail, you know how painful they can be. It's ridiculous. One of the worst parts of my day is putting on my socks in the morning!

I've been prone to ingrown toenails (or infected skin around the toenail, whichever) all my life, and I've always been able to take care of them. This is the first time I've had to give in and go to a doctor. I could probably take care of this one, too, but I admit it's just too painful to go digging around in there. I've always been able to handle the pain in the past, but this is the worst ingrown toenail I've ever had. I pity anyone whose ingrown toenails are always like this.

Fatigue and Chills

I know that everyone who has had a stem cell transplant goes through this. My fatigue comes out of the blue. Imagine walking along, minding your own business, and then someone suddenly stepping out and hitting you in the face with a stick. I don't have the pain of being hit in the face with a stick, but I do get the shock feeling. I lose track of what's going on around me, my ears start ringing, and I have to get my bearings. I can get my strength back by laying down for a few minutes, but if I reach that point, I can count on a 12 to 17 hour sleep the next time I fall asleep.

Often the fatigue is combined with chills. I go looking for a blanket, and I curl up in it. Fortunately, I've lost a lot of weight, and a lot of my youthful flexibility has returned. I can curl up in a tight, warm ball like a cat. That is really helpful.

On the other hand, we were visiting people last night when I got the chills. Fortunately, they seemed easy going to me, so I took my shoes off, pulled my knees to my chest on the couch, and covered myself with my jacket, and visited with them in that position. I saw no indication in their faces that they thought I was weird at all, which was nice.


I've had short term memory problems all my life. Worse, when I was in college I had a year where I smoked marijuana every day, multiple times per day. People talk about how safe marijuana is, but I'll tell you that regular marijuana smoking is devastating to the short-term memory, and that marijuana also STRONGLY produces paranoia and apathy.

That's not a political statement. I don't care if the government legalizes marijuana. It may help balance the budget. I just want to be a voice saying it's not safe to smoke marijuana. It's STUPID!

That said, chemo has expanded the meaning of "short-term" in my life. My short-term memory isn't worse ... short-term is just a longer period. Like anything less than a year.

It's funny, but last week sometime, a young friend of mine asked me, "Did all the treatment affect your memory?"

I really wondered how she knew to ask that, and I told her yes.

An hour later, I got a text from my secretary, who only works on Monday and Wednesday. It was Monday. The text was a reminder that I had given her permission to skip Monday and work Tuesday instead. Her text was in the form of a question, however. It said, "Do you remember I won't be in today?"

I didn't remember. Not even a faint memory. I trust her completely, so I'm confident she wasn't lying to me.

A few minutes later, a thought struck me.

I sent her a text saying, "I didn't approve any vacation time over Christmas that overlaps my vacation time, did I?"

What an opportunity for a young secretary! She was very kind in sending back, "I'm planning on being here because you will be gone, although it's tempting to say you did because you don't remember."

Gut Issues

Let's add this, too. I've been taking antibiotics every day for a year and a half. That means all the good bacteria in my stomach has been long since destroyed. I take new bacteria in a pill (a pro-biotic) each day, but that's a losing battle.

I won't be gross and discuss problems that can arise when your stomach doesn't work completely right, but every one of us face this issue because we're all on daily antibiotics. Of course a lot of us would have problems anyway because of GVH. I'm not sure how the docs tell which is which.


There are times when depression hits out of the blue. It's not really a problem for me because I'm pretty well-trained—hmm, no, exceptionally well-trained—in dealing with depression, just because of my community background, the pastoral role I've played in the church the last fifteen years, and my passion for learning.

I have two powerful protections against depression. Together, so far, they've served me well.

One, I have the best support system any cancer patient could ever have. Great, supportive, and large family, both close and extended, and a tight-knit, close christian community.

Two, I am well aware that when depression hits that the depression is nothing more than chemicals and electrical signals in the brain. I do not treat depression as something to be paid attention to. Instead, I treat depression like a hallucination. There's nothing real about any of the thoughts that come with it. Yes, the feelings are real enough, but acting on those feelings would be like acting on a hallucination. Never do that.

I go rest when I'm hit by depression, and I treat it like the flu. It will go away; it's like a sickness. I call for friends; I think about my kids and my wife; and I get my thoughts back into a normal track.

I know some people need stronger treatment than that. My friends and family make it hard for depression to be strong even when there's a real chemical source for it. Some people may need medication to change the feelings.

Nonetheless, the same things is true for them. They are just hallucinating. Never act on depression; act against it like you would act against the flu. Get help.

Life Is Good

So after all the things I've written about, what's so good about life?

Philosophically, life is a gift from God. He's in control of everything. There is nothing that he can't turn around. Until then, there is little that can teach us like suffering can. People who have suffered, battled, kept their chin up, and won are some of the best and deepest people you can meet. Suffering is worth it to produce those great ones that are among us and to give us hope of being among those great ones.

I walked a mile with laughter
She chattered all the way
But nary a things learned I
For all she had to say

I walked a mile with sorrow
Never a word said she
But, oh, the things I learned from her
When sorrow walked with me

But I'm not a philosopher. I'm a pragmatist. I like practical things, and I have a GOOD life. I don't mean to boast ... I'll share everything I have ...

I have wonderful, warm, life-loving friends.

My parents live across the street, and they're wise and fun. They understand what matters in life. They are worth following.

I have six children, and they are healthy, happy, and while they've face the standard problems of life, especially when they hit those teen years, they are well-armored against stupidity. I need to write a post on stupidity some day. It has a very specific meaning to me. It means living life to obtain pleasure now while ignoring the effect on other people or on your future happiness. Thoughtless pleasure, that's the only definition of stupidity that I use. My kids are stricken with occasional bouts of stupidity, just like I am, but they understand why stupidity is to be avoided, and that living a life of purpose is of primary importance, right behind the importance of making God first in your life.

I have the greatest wife ever, and probably the only woman on earth who could have tolerated me. I'm sure there's other women who know me who would think, "Are you kidding. You're a really nice person. Why would you say no one else could have tolerated you?"

I think back to burning all the handles off our pots as we cooked over a fire, living in a tent in a closed state park next to a lake. I think about the squirrels tearing their way through the tent to eat our bread, and of driving our big van into town trying to find a job.

I think about a two-year-old with impetigo, a six-month-old sitting in a car seat, and a four-year-old toddling down near the water. I think about skipping a meal, burritos at a 7-11, because I only had enough money for the family to eat.

All 'cause "God said." And my wife didn't agree "God said." She just opted to take the risk and come along.

I have the greatest wife ever. I knew it when I met her. I told myself, "Paul, if you don't marry this lady, there will never be another one like her. Never."

Thank God that worked out.

I have a really great life. I didn't want this to be a depressing post, so I thought I'd better put it in perspective.

Oh, and we drove to California on Thursday, Friday, and Saturday, so that we could see our oldest son's girlfriend (the 4-year-old in the tent by the lake story) in a theater version of It's a Wonderful Life. Oh, my goodness! That was so delightful! It was well done, and whoever turned that movie into a musical play did an excellent, excellent job. I still get flushed with delight just thinking about it!

We got to the play early, and a homeless guy stopped me and tried to sell me a cane. He had two. I have no idea where he got them. He wanted to sell one for $2. I gave him $5, then I walked around the rest of the day on the cane as though I needed it. It took some practice to get good at using it right because I'm not having any leg pain. It was fun.

Okay, I'll quit now. Otherwise I'm going to end up telling more stories, like our trip to Annie's cafe yesterday ...

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.

Tuesday, October 30, 2012

My First Wheelchair

I don't think I have any pictures of me in my wheelchair. I think my wife took one or two yesterday, but I don't have one.

Don't worry. It's not as bad as it sounds.

Well, don't worry, but do pray. It worries me when I say "don't worry." So let me say, "Lord willing, there's not really any problem here."

The doctors got my blood thinned to an INRating of over 2.0, which means my blood is more than twice as thin as normal (whatever twice as thin means practically). When it was over 2.0 on Sunday morning, they released me from the hospital.

They didn't send me home with any Lovenox, thank God. I'm just on Coumadin, and that is plenty. Yesterday, on the day after I was released from the hospital, I had my INR checked at Prime Care Clinic, and it was 4.7! That is almost thin enough to be alarming. They're trying to get it between 2.0 and 3.0.

The last time I was on Coumadin, I got all the way up to 8.9, blood almost 9 times as thin as average. That did alarm the hospital (last time, Vanderbilt Medical Center was monitoring my Coumadin and INR).

From that experience, I know pretty closely the amount of Coumadin I need even without their telling me. No problem, though, I like the idea of my blood being extra thin so the clot dissolves faster.

Despite the very thin blood, the clot has not dissolved yet. When my leg is elevated, the pain is minimal. When my leg is elevated and I'm on a pain pill (oxycodon, 5 mg), there is no pain whatsoever. However, when I am standing, walking, or running (I can still walk or run with no problem) the pain builds rapidly to an unbearable level.

The best situation is if I'm on a pain pill and my calf is wrapped in an ace wrap, or if I'm wearing a diabetic pressure sock. Then, I can stand or walk around for three or four minutes. Without the ace wrap or sock, even when I'm on a pain pill, I have two minutes at most, sometimes less.

So what I've been doing, say if I need a drink, is to run to the kitchen and grab a glass. Then I run back to the couch and put my foot up. I don't have to put it up on the back of a couch. I can just put it across on the seat, and that's high enough. (I don't know why that is. It seems like it would need to be above my heart.) After a couple minutes of rest there, I run back to the kitchen, pour whatever into the glass, and walk back to the couch.

I do something similar going to the bathroom. I run to the bathroom, or walk really fast, and--male or not--I sit on the toilet no matter what I have to do there. Sitting with my foot on the floor hurts some, but nothing like standing.

Sorry if that's graphic. These are the kind of things you end up dealing with in situations like this.

So last night I borrowed a wheelchair. It was awesome!

I sit in it with my right ankle on my left knee. That elevates the knee enough that my calf doesn't hurt. Then, if I need to eat something, I wheel to the kitchen, and I can stand up quickly to get a plate or glass or food or whatever. (It doesn't help going to the bathroom much, especially because it doesn't really fit through my bedroom door.

Today I took it down to the Selmer Buzz, my business. How convenient! I could do everything for myself ... almost.

Okay, that said, I need to tell you one more thing. My wife and several other women I know complain about my independence. It takes effort for me to ask someone other than my children to go get me something out of the kitchen. My wife really doesn't like it when I go to the kitchen on my own when she's home, even when I had the wheelchair. (I left the wheelchair at the Buzz today because it's a lot more useful to me there. It only helps a little at home.)

It's been suggested that I have a stubborn independent streak. I say I just hate to bother people making them carry out little errands for me that interrupt what I'm doing. The stubborn independent streak may apply to parts of my life, but I don't think that's what's happening here.

What was kind of fun is that the wheelchair prompted an older couple--customers at the Buzz who were "led" to drive to Selmer today, something they rarely do--to pray for me right there in the Buzz. It was very cool, really, because I like them. I did have to make her stop talking at one point, though, so I could go back to talking to a young man who was applying for a job with us, then go to work on the things I had come to the Buzz to do.

The prayers didn't seem to make a difference though I completely believe in instantaneous divine healing, and I've seen a number of amazing cases of it. (See also this blog; I have a friend that has met the author of that blog and seen some of the healings he describes.) I was hopeful, but I can't say that I personally was feeling that God wanted to instantly heal me. I like to know in advance whether my prayers are going to be answered.

After they left, I checked a couple times to see if I was healed. I was hoping maybe they had such great faith that I would just be better. That meant I had to get up out of the wheelchair and stand around for a minute or two. I had both taken a pain pill, and I was wearing compression socks, so it took a bit to begin feeling pain.

No go, though.

Anyway, that's where I'm at right now. Clot hasn't healed yet. My leg doesn't hurt write now because I'm typing in bed. It sure hurts when I get down and move around, though. I sure wouldn't mind that clot clearing up!

Thanks to all of you who follow this. I hope to go to work on turning this web site into a book soon.

I did do an introduction to 1 John today. I love doing podcasts. Hopefully, I'll get to do that more. I'll let you know when I get the podcast uploaded. I think you'll find it interesting.

Wednesday, October 24, 2012

Something Changed

Well, I made it five days. I think I better not "officially" close down the blog anymore.

I'm writing this from McNairy Regional Hospital in Selmer. Apparently, the stretching that I pictured in the last post was not going to do the job. It turns out that the calf problem is a blood clot, perhaps two. I have a clot behind the knee, and then I either have another in the hamstring or the clot runs up into the hamstring as well.

Clots make medical professionals nervous. The doctor told me not to stop for lunch but to go straight to the hospital, get admitted, and get the first dose of Lovenox. Of course, that was almost two hours ago. "Hurry up and wait" applies just as much in the hospital setting as it does in the military.

So here I am praying that we won't be sent home with any Lovenox. Here in the hospital, they administer it by IV (I think). At home, it's a shot to the stomach that is occasionally terribly painful. Back in February I was getting insulin every day because I was being fed intravenously. Those shots were given to the stomach, too, but they didn't burn like the Lovenox shots. I much prefer the Coumadin pills.

Inserted note: no such luck. I got the Lovenox shot in the stomach. It didn't hurt at all when administered, but five minutes later it started burning. Fortunately, it was pretty mild and only lasted 10 or 15 minutes. I hate Lovenox shots. The IV insertion hurt a lot worse because it's a much bigger needle, but that doesn't bother me. It's those stomach shots that make me tense up and flinch.

Big Prayer Request

I was also notified by email that a lady who got a marrow transplant 4 days after me has relapsed.

I'm capable of despairing like anyone else, and her story hits really close to home. She has a leukemia they called biphenotypic, which means it's like both ALL and AML. Mine is not biphenotypic, but undifferentiated. That means, I believe, that they were able to determine that she had both lymphocytic and myeloid cells go bad. My cells went bad so early in their development that they were unable to determine whether mine were lymphoid or myeloid. However, I had symptoms of both ALL and AML, like she did.

She got a fully ablative transplant with chemo and radiation just as I did and just 4 days after.

Her picture on her blog looks familiar to me, though I know I never officially met her. Even if I had met her, she would have been bald like me.

When I got the email, I cried like she was my best friend and I was brokenhearted. That is very much not my typical reaction to bad news. (I'm much more likely to cry at good news.)

When I have unusual emotional reactions, I always look to God. Our Father will let us feel his feelings sometimes. It helps us understand him in whatever small way we can and allows us to touch the immense depths of his love.

So let me go out on a limb again and say that I think God is going to show his great power in Jennifer, and that this relapse is going to be an opportunity for him to be glorified. I have no idea how this could turn into a good thing, but I predict it will because God cares about this situation.

Friday, October 19, 2012

Wrapping Up the Story (Unless Something Changes)

This blog was created so that I could journal my experience with acute leukemia and its treatment. I haven't blogged since September 9 because I didn't have any real health news. I love blogging, I love telling stories, I love explaining the Christian Scriptures and church history, and I love writing about health and scientific issues.

This isn't really the place for any of that, however.

I don't want this to be anything except the story of my leukemia battle because I think it's a story worth telling. It's been inspirational, honest, and humorous (I've been told). More than one person has told me I could simply turn the blog into a book, which is what I've hoped for from the beginning.

Let me give credit to others who have written inspirational stories (many of whom are in my blog list). What I've gone through and written about is not unique, but hopefully my perspective has been both interesting and unique.

So here's to hoping this is my final post on this blog. I'm only coming back here if new problems arise. The slow return to health is not really an interesting story, or at least I don't know how to make it one. And I sure hope that is what is in front of me.

I've spent a lot of this day with my foot up because my calf is really painful. Day before yesterday, I did a walk/run of about two miles on Monday. My calf was just a little sore the next day. Nonetheless I did laps around the warehouse, including some sprints the length of our 30-yard makeshift soccer field.

Laying around on the couch this afternoon

The next morning was scheduled to be a family trip to Big Hill State Pond, which is supposed to have the best fall foliage in this area, and my calf was very sore. Big Hill Pond is aptly named, and the best trail there involves a couple big hills.

I had to make a decision. I knew that making the trip with my family would be a terrible idea for my leg. I couldn't miss the combination of nature and family, however, so I went. Four miles of hills were a bit more than my leg could tolerate, so I've been working on my back and taking ibuprofen the last two days.

It was worth it.

About three weeks ago a mile run/walk one day followed by soccer with my son and daughter the next day created the same effect on my calf. It was so painful that I scheduled an appointment with my primary care doctor to make sure it wasn't a blood clot. After an ultra sound, they assured me it wasn't a blood clot, and it healed up in just a week, which I was very glad for.

Hopefully this one will heal just as fast.

My last appointment with Vanderbilt was in mid-September sometime. They're very happy with how I'm doing. I'm having some GVH of the skin (rashes because my new immune system is attacking my skin), but it's mild and steroid cream is controlling it well.

The hemorrhoids have pretty much stopped over the last month, which is a life-changing improvement.

I'm still on minimal immuno-suppressives, and we won't try to wean off those until the GVH has stopped.

I feel like (and am hoping) this is the end of the story for me except a smooth transition back to full health. (I plan on walking a 5K November 3.) If you're new to this blog, you should start back at the beginning of the story when exciting things were happening. Or use my blog list to find others that are still in the midst of their battle, and please pray and hope for them.

If you want to know what's happening with me in the future, here's how:

Thanks for all your prayers and for following my journey. Please pray there's nothing more to follow!

Sunday, September 9, 2012

Iliopsoas and Piriformis Stretches

I promised once to write a post on how I take care of my lower back. This is it.

Note, I'm not selling anything in this post. I am going to recommend a book at the end, but the advice on taking care of your lower back will cost you nothing unless you don't own a tennis ball. In that case, I am going to suggest you buy one somewhere. If you have lower back pain or sciatica and have never tried the two stretches recommended here, there's a halfway decent chance you'll find significant relief today!

I've done a lot of research on this because both my parents had bad backs, and I've had problems since I was in my 20's. Worse, My wife had two years worth of sciatica. We tried everything. We bought back programs, and we saw two different chiropractors and two different muscle therapists. We paid for treatments from a really impressive machine that gave my wife the equivalent of traction.

Most of the things we tried helped some. The problem was that she had a ruptured disk that was directly on one of the nerves that becomes part of the sciatic nerve. She ended up needing surgery to remove the debris from the blown disk. (We were thrilled to get Dr. Kevin Foley and his "minimally invasive" surgery. It seemed miraculous.)

Despite the fact that she needed surgery, we learned a lot along the way. I also took up long distance running as a 40-year-old so that I had my own sciatica and knee issues. The stretches I'm recommending here have a long history of being effective not just on me but on friends.

The Iliopsoas Muscle and the Psoas Major

Almost unbelievably, we have a muscle that anchors on the bottom six vertebrae of our spine. Yeah, really! Here's a picture of it!

From Wikimedia Commons, public domain

That's the psoas major. It is one head of the iliopsoas muscle. The other head attaches to the inside of the pelvis, which isn't so bad.

The psoas major is the reason you've been told not to do situps with your legs straight. In fact, nowadays most trainers don't recommend situps at all, just crunches. When you do a crunch, you lift just your shoulders off the ground and tighten your ab muscles. As soon as you lift your lower back off the ground, you engage the psoas major and yank right on the bottom of your spinal column!

That's not too bad with your legs bent, as the angle is better. With your legs straight, however, you have terrible leverage and your psoas major is mostly just compressing your disks, not lifting.

The other problem with the psoas major affects office workers or those who drive a lot. You can probably tell from the picture that if you sit down you are going to greatly shorten the muscle. That's not a problem until you stand back up. If you sit most of the time, when you stand back up the psoas major is going to be tight and feel like it's being stretched. As a result, it will squeeze those six vertebrae together, compressing the disks between them. That can lead to both a sore lower back and to nerve pain.

So here's how you stretch the psoas major:


The piriformis muscle helps rotate your leg. It runs from your tailbone to your femur at the hip. It is buried under your gluteus maximus, so it is very difficult to "palpate" (i.e., touch). In other words, you can't massage it. You can't really massage the psoas major, mentioned above, either. That's part of the reason they give so many problems.

I am going to tell you how to get a little bit of massage on the piriformis below, though.

The problem with the piriformis is that it sits directly on the sciatic nerve. If it gets tight and sore, it can press on the nerve and give you sciatica, which is shooting pains down your leg and sometimes numbness. In some people the sciatic nerve even goes right through the piriformis. (And some people don't have one!!!)

The piriformis can get irritated in anyone. Runners typically have problems with it. I'd imagine bike riders do, too.

I'm going to show you how to stretch it, and then how to massage it.

First, the stretch:

The stretch is simple enough, but I had somewhat minor sciatic pain from my piriformis for years in my late 30's. When someone showed me this stretch it was such a relief I almost cried for joy.

You can also massage the piriformis by sitting on a tennis ball on the floor. Massage therapists say that the piriformis basically runs right where the middle of your back pocket would fall when you're wearing jeans (assuming you're not "sagging").

You don't need to move around a lot. Find the sore spots and just put as much pressure as you can COMFORTABLY stand. Don't make it horribly painful. It's amazing how such "acupressure" relaxes the muscle.

You may find there's a lot of sore spots around your bottom and hips that are helped by such pressure.

WARNING: Just be very careful to sit where muscle is on the ball, not bone. It's really just your tailbone, the top of your femur (your hip joint), and the bottom of your pelvis that you need to avoid. Those are not hard to find.

Ok, I hope that helps.

Oh, wait. I promised to recommend a book. Instead, let me recommend a web site, where I think the best and cheapest amount of information on taking care of muscles and joints are. I've been using this site to help others for about 12 years, with immense success. The book I would recommend from that site is any of the "Pain-Free" series. "Pain-Free Living" is the most comprehensive, but it's also the most expensive. You'll find the other books, even though they're specialized for runners and triathletes, espouse the same principles and will apply to you, and they're cheaper.

The website is I get a commission if you buy anything from her site. I never feel better than when I'm recommending a julstro product.

Of course, try out what I wrote above and what's in the videos above. I'll bet 30% of the people who read this, assuming you're over 30, will find significant benefit from the stretches. Others will have friends who would benefit.

I've got a number of stories about people who've been helped by this advice that you can read at my Christian history site. I don't want to write a bunch of stories here and make this page longer.

Thursday, August 16, 2012

Chemo Fingerprints and Tapering Again

Rather than start with something serious, let's have a little fun at my expense.

I'm bald again.

Why? Well, this has a lot to do with it:

Need a clearer view?

I decided that I had little enough hair that I could just trim it myself with the beard trimmer. It looks okay with a modern-style crew cut, so that's what I was going to do.

I forgot, however, to check the charge on my beard trimmer before I began, and it was completely dead by the time I was done with one side of my head.


My trimmer doesn't run plugged in. Plugging it in is just for recharging.

We were one our way to Freed Hardeman University to finish enrolling Caleb,  and I really didn't want to show up there as a punk rocker. On the spur of the moment, all I could think of to do was to use the razor that doesn't require batteries. My good ol', three-blade, disposable razor.

It took a little while, but I got it. My disposable razor doesn't have a setting for "3-day beard" or anything like that, so bald seemed to be the only choice.

Everyone seems to agree that I look ten years younger bald, so I like that, but I'm not staying bald. Here's a picture in better light. I'm not mad; I'm just squinting at the sun and trying to hurry because I'm not supposed to be out in the sun ... especially with all that forehead exposed!

Resolving Last Week's "Seizure of Persons"

I was trying to think of a Christian way to deal with the events of last week. My arrest was not a big deal. I brought that on myself. My son's arrest, however, was ridiculous and leaving the issue alone so that it could happen to the next person did not seem like an option to me.

A couple days ago, I was struck by what should have been obvious. Just go talk to the sheriff, and see if he'll do something about the situation!

So yesterday I dropped in to make an appointment. He was in, and he saw me immediately.

I added this picture just to
have something pretty to contrast
all the pictures of me.
We went back and forth a little bit, but in the end, I think I have to acknowledge that there is no way for the sheriff's office to double check the warrants that are issued to them. He offered to show me the stack of warrants that they have outstanding.

They do have to be double checked, though, and some attempt needs to be made to contact those, like my son, that obviously don't need to be picked up in the middle of the night. Protection against unreasonable warrants is a right that the constitution says "shall not be violated."

The place that needs to happen, however, is in the county clerk's office, where the warrants are issued. As it turned out, the sheriff had already talked to my lawyer, and both of them had already talked to the county clerk's office. They are already putting a system in place so that appeals, which happen at the circuit court in the middle of town, are registered with the justice center, which is on the bypass on the edge of town.

I think they were embarrassed that no system was already in place, and they're rectifying that as fast as possible.

Does no one appeal decisions in this county? Is this really the first time this has ever come up? Maybe there's just not much reason to appeal a general sessions court ruling, and it happens very rarely.

I also talked to him about the condition of the jail cell, and the sheriff told me it's already their policy to clean the cells between prisoners. He promised to leave his office and go straight in to check on the condition of the cell I was in and ask about what happened last week.

So overall I was pretty happy with that. Our lawyer is involved in the discussions with the county clerk's office, so I'm confident he'll make sure the system they set in place will never again put him in the position of having one of his clients arrested while the case is on appeal.

Chemo Fingerprints

One thing I forgot to tell you was the great difficulty they had fingerprinting me last week. Fingerprinting has come a long way since I was fingerprinted every time I moved in the military in the 80's. No ink is involved now. There's a scanner, and it puts a picture up on a computer monitor.

The computer kept rejecting my fingerprints. Finally, the guy doing the fingerprinting asked to see my hands. Then he showed me the crevices running the length of my fingers, including right across my fingerprints. After he showed me those, he turned the monitor my way so that I could see that not only did I have these crevices running the length of my fingers, but I had tinier ones crossing my fingertips as well. We couldn't see them, but the scanner was picking them up. It looked like someone had made a checkerboard with tiny squares all over my fingertips. Behind that checkerboard, we could see the whorls, loops, and arches that are supposed to make up my fingerprint. It was like they were covered in a mesh net on the screen.

Can you see the lines on my fingers and the web design on my index finger? The computer could see them, too; better than it could see my fingerprints.
Here's a closer view. There's a lot more lines too small to see that the computer picked up.

So we took 7 or 8 prints of each finger, and then he picked the best one. The computer itself only approved one or two.

The Taper

After the rough month of July, I was scared on Monday when we dropped back to 7.5 mg of steroids instead of 10.

Worse, on Tuesday I was very sick. I was exhausted, had diarrhea, and I was constantly nauseous. I slept a good 7 hours over three naps during the day besides what I had slept the night before, and I went to bed at 9 pm.

Wednesday, I woke up feeling as well as I've felt since I left the hospital. I got up, took one of my cars to the repair shop at 7 a.m., then walked a mile to a different repair shop to pick up our other car. It was after that I went to see the sheriff.

I guess I really was sick on Tuesday, not just reacting to the steroid taper.

We'll see. We're not tapering any further until the doctors see me again, and that won't be until September 13.

Saturday, August 4, 2012

Chemo Lines Revisited

I'm doing remarkably better now that I'm back on the steroids. I do need to repeat my note of self-justification that the amount of steroids that I am on is no more than what your body is making every day.

I am still fascinated by the "chemo line" effect. I wrote a couple months ago about the chemo lines on my fingernails. Those have grown out, but now I'm dealing with the chemo lines on my toenails, as seen below:

See that big line down the middle of my big toenail. All my toenails have lines like that. Some have grown to the end, and the closer to the end the chemo line gets, the more the nail separates at the line. You can probably see how one edge of my left big toe is separating already.

I didn't take the clearest photo. I just couldn't get the right lighting. Anyway, the chemo line on the toenail of the second toe has reached the end and half of it is loose, so I cut most of that half off.

It's not really a problem on my toes like it was on my fingers. The nails get real jagged and catch on every bit of fabric there is, especially socks, but I can just tape my toes up. Then there's no problem. I couldn't do that with my fingers because I have to wash my hands all day, use my fingers to do things, etc. Toes are mostly useless except for being stubbed and for a place for bees to survive and sting when you step on them barefoot.

Notice how crowded those right toes are? I have just one bunion. I'm going to give free bunion advice to anyone who wants it. First, mine's not bad (nor is it related to chemo, but to kicking a football in jr. high school), so if you have a severe bunion, my solution may not work. Here's what a bunion looks like:

See how big the knuckle of the big toe is? That's what's meant by a bunion. Calcium builds up in the knuckle, driving the big toe towards the other toes. It crowds your toes, and it can cause pain both inside the damaged knuckle and on the side of the knuckle from rubbing on shoes.

I never had the shoe problem, but the knuckle used to ache pretty much every evening unless I was off my feet all day.

The solution? I got some MSM/Glucosamine cream from Nature's Sunshine. (You can buy it all over the internet.) I used it topically on the knuckle once or twice a day, and within a week my toe joint didn't ache at all. That continued for a few months, then I quit for a couple weeks just to make sure the cream was the source of the improvement. It was. The pain came back in a few days.

Over the next two years I tried that experiment several times, quitting for a couple weeks, and the pain always came back in 3 or 4 days.

After about four years, I hit a point where I either forgot to restock or just got lazy and quit using it, and the pain has never come back. I haven't used the cream in six years, and my bunion hasn't hurt me the entire time.

If you have a painful bunion, I hope that works for you, too.

Oh, my daughter has a bunion. It works for her as well. She uses the MSM/Glucosamine cream for a while, then quits a while until the bunion starts aching again. Then I'll get her another tube. We probably only buy one tube every two years for her.

Weird post, I know, but I am just fascinated by the chemo lines. They are caused, by the way, by chemo killing the fingernail and toenail cells, then the nails going back to growing once the chemo wears off.

Thursday, August 2, 2012

Graft Versus Host Disease (GVHD) and Steroids

On July 31, I was supposed to drop completely off the steroids I was taking. I had been tapering all month. I contacted Vanderbilt, told them how things have been, and they told me to go back up to 10mg per day, which is where I was at in mid-June.

In two days, I felt like I'd been born again. Mood jumped, appetite increased, and all the intestinal warfare stopped.

And warfare is the right word. Graft-versus-Host Disease (GVHD) is my new immune system attacking my body, in this case my gut, because it doesn't recognize it as a friend. Going back up to 10mg Prednisone got my immune system off my gut.

So today we asked about when we might be able to taper off the steroids safely. (I saw "we" because my wife, who is my caretaker, goes through all this with me and handles my medications.) I learned some things about steroids I didn't know, or at least about Prednisone, this specific steroid. I also learned some things about stem cells and about transplants being rejected.


Your body (but not mine), produces about 7 milligrams of steroids on its own everyday. The nurse tells me that because I've received so much steroids over the last year, my adrenal glands have "gone to sleep" figuring they're not needed. The taper, going off the steroids bit by bit, is to get my body to wake up and start producing its own steroids. Until then, when we may have to settle in at 7.5 mg and give my body what it's not producing. The 10 mg that I'm getting now I will only get for two weeks, then we'll stay at 7.5 for a while until we're ready to test my body again.

Transplants and Stem Cells

When a person receives a kidney, liver, or heart transplant, he or she must stay on immunosuppressive medicines all their life. Their immune system, if given full reign, will attack the new organ as foreign, and that will be as true 30 years from the transplant as it is on the day of the transplant.

Stem cells are not so.

Stem cells are more "plastic." They can be trained. So today my immune system (which is the real foreigner here), will begin attacking my gut and skin if it is given full reign. But because I have the stem cells that produced the blood system (and thus the immune system), the stem cells are learning. While the immune system is on a leash, the cells are learning whom they can live with and whom they can't live with.

Eventually, sometimes its three, four, or five years down the road, bone marrow transplant recipients can let their immune systems off the leash, it will have learned to recognize the patient's original DNA as not harmful.

Until then, the doctors let the immune system loose a little at a time, chain it back up when it snarls and bites, then let it off again later; testing ... testing ... until they get the patient off all immunosuppressives.

I'm on very minor amounts, and the stem cells I got were really stem cells. People with adult donors get "hematopoietic" stem cells, which are cells that can become any blood cell. I got cells from an infant's umbilical cord (no, not an aborted infant; donated by a wonderful set of parents after a live, healthy birth). They're completely naive, untrained stem cells, ready to make blood and learn how to take on the world.

People like me who get cord blood are in more danger the first 30 days after transplant because engrafting goes slowly, so we're completely without an immune system longer than those with an adult donor (or who are self-donors). But after 90 days, our new immune system usually gives us less problems than those who have adult donors. Wow, that would be nice. I made it past the "sorry, you're much more likely to die during these 30 days than those with adult donors" so I'm happy to try to reap the benefit of those little thriving baby cells.

This is just like being a parent. Getting those children to behave can sometimes be a real challenge.

Have a great day. Conquer every obstacle. Roar a lot when the going gets difficult. Trust God, and there's nothing you can't overcome.

Sunday, July 29, 2012

A Couple Letters

My friend Jeremiah doesn't post comments on my blog. He sends me emails from his iPhone. This one, though, I needed to share. It was a response to yesterday's post:

When [a mutual friend] told me you were in bad shape (after I read your last post) I thought "he's trying to do too much." I don't think you lied to yourself in the hospital. I believe you didn't understand how much work it is for habitual overachievers not to overfill their plates.
     I guess we think God won't be pleased with us unless we have ten things going on at once. For some that may be true, but this is hardly the case with you. Please, please take time to heal. Those doctors almost killed you in an effort to cure you. You can't just jump back into this whirlwind of activity we call church life. Life will never be the same again, Bilbo. Or in your case it may be Frodo. You've been stabbed, stung, and had your finger bitten off. Think you can go back to life in the Shire? Just write for a while and leave Shire affairs to Sam, Merry, and Pippen.
     See you soon - Beorn

I had to laugh. I loved the reference to The Hobbit and The Lord of the Rings. In fact, I'm reading The Hobbit to my kids again. (One more thing I didn't mention I was doing in yesterday's post.

Second Letter and Divine Healing

Another friend wrote to encourage me to be available to seeing miracles happen around me. He referenced a blog that I read on and off called Joel 2 Generation. In fact, my friend went to Portland for a few days for some "training/outreach" that the blog owner was doing. He was present at the healing that is described in the link I just gave you.

I added the blog to my blog roll so I'd remember to read it more often.

I think I've linked Joel 2 Generation before. I love his honesty, as he does not only include success stories, but I-don't-know and nothing-happened stories as well. I've only met two or three guys with the kind of success rate in praying for healing or other miracles as the writer of that blog.

One of those people was my first boss in the Air Force, some 30 years ago. He's surely one of the main reasons I became a Christian. He started praying, and there was no getting in the way of God coming after me.

Anyway, I thought I'd tell you a couple things I told my friend.

I mentioned yesterday that I wanted to put a couple Martin Luther quotes on the quote page of my web site (which I did this morning at 4 a.m.). The reason I had a Martin Luther book is because yesterday, I was standing in my bedroom a little bewildered because I had to go to the bathroom and I knew how bad it was going to hurt.

My eyes fell on my 7-volume set of Martin Luther's sermons. I was struck with a craving to read one. Then I felt God whisper, "Go ahead, this trip to the bathroom isn't going to hurt much."

I've said before, God rarely speaks to me in words. It's more feelings, but after 30 years I've gotten pretty good at distinguishing between the Word of God in my heart and my own thoughts or gut feelings. I base that claim on the success of acting on what I hear inwardly. Levels of reliability:

  1. God's Spirit in my heart
  2. Gut feeling/intuition
  3. My thoughts

There's a difference between those three.

I took the book to the bathroom, and what do you know, it barely hurt at all. That was miraculous enough by itself. I also read a part of a sermon that made me realize that sometimes it's not God letting you go through suffering, but it's an attack of the devil, and we should be warring, not surrendering. (Note: I only read a part of the sermon because camping out on the toilet helps create hemorrhoids, not heal them. I try to move on as quickly as possible.)

So afterword, I called for the elders of the church and ask them to come pray for me.

As I was waiting, I fell asleep. When I woke up, I had to go to the bathroom badly. This time, it did hurt, and there was more blood than I'm comfortable with. My wife and I agreed we were going to pray with the elders of the church first, call Vanderbilt later.

As I was waiting for the elders, I prayed, "God, I could really use something from you; can you send someone to give me something spiritual? I know the elders will, but I called them. It would help me to know you sent someone."

Not 30 seconds later, a young lady came in with a guitar and meekly asked, "Is it okay if I sing Papa Shammah a song?" ("Papa Shammah" is what the kids here at Rose Creek Village call me, usually until they're about 25, when they just go to calling me "Shammah.")

The song was the hymn that starts "My hope is built on nothing less than Jesus blood and righteousness," but updated to a modern version.

I was worn out, tired, in pain, a little worried, and that song was a direct answer to prayer. I cried while she sang. I said thank you, and she quietly walked out, God's little messenger, not wasting any words or speaking any but what God had given her.

The elders came later, anointed me with oil, and that helped a little.

This morning, I was not in so much pain, and I got up to go to our gathering, but it was hard working up the energy. My wife advised me to stay home and rest, and since every step was getting harder, I complied.

During the gathering, I knew they would pray for me, but in this case, I'm pretty certain I knew when they prayed for me. My energy picked up and life in general got a little brighter. I got up and did some exercises with the yoga stretch band.

So here I am writing, grateful for the touch of God. The hemorrhoids are itching, not burning, which for me is a sign of healing. For some reason the recurrent trips to the bathroom have stopped, and I've already tried everything I could think of over the last week to prevent that. I haven't done anything new.

So all of that is probably a bizarre dream world to atheists, but I learned something when Rachel walked in to play her guitar yesterday. I recognized the hymn, even though the tune was different, but I never realize that along with the statement that I wholly lean on Jesus' name, the song also says that all that crazy stuff that I hope and believe in is true. It says that God is paying attention to us, and that our hope will not result in shame. It may not say that in the words, but between the lines that message was being shouted.

Oh, taste and see that the Lord is good. How blessed is the one who puts his trust in you. Their faces shall never be ashamed. (Ps. 34:8,5)

Saturday, July 28, 2012

July 28, 2012: Just Chatting

Apparently even after 17 years in the Tennessee countryside, I'm still completely suburban.

Yesterday my daughter was babysitting a couple small children, and she told them, "go out back and get all the red tomatoes."

Rather reacting like this was a perfectly normal thing to do—for, after all, tomatoes grow on plants, and we have tomato plants in our back yard—I flinched inside. We don't eat food from the yard! Dogs and ants eat off the ground, not us. We get our food from nice, clean places like grocery stores and restaurants.

The feeling only lasted a moment, and I didn't actually say anything so silly to my daughter, but it reminded me how warped my view of life can get if I don't regularly update my mind with the truth.

So I haven't been feeling very well the last couple days again. I tried a liquid diet for three days, making sure to include milk, multiple bottles of Ensure, and some tablespoonfuls of olive and coconut oil to make sure to keep my calories up. I was hoping to give my intestines and hemorrhoids a rest.

That was a colossal failure. Didn't work at all. My body treated Ensure and the oil like food, and I was in the bathroom every bit as much as before.

So last night I gave up and had an apple, knowing that would provide some fiber for bulk after three days of liquids. I felt fine before I had it, but I threw it up in less than five minutes. I still felt pretty good, so I had one of those pre-wrapped, store-bought ice cream cones instead.

I don't think it came off a plant in the back yard.

Learning Some Lessons

I don't know if the following will make any sense or do anything for you. I'm just telling you what I've learned the last couple days, which may or may not apply to you, help you, or interest you.

Yesterday, I was weak, tired, had terrible gas pains, plus the hemorrhoids were bad. I could thing of LOTS of things I could be doing rather than laying in bed, but I decided it was time to give in. I slept till 11:45 a.m.

When I awoke, I curled up in the blankets, and deep inside I curled up inside of God, too. I felt his presence, I felt safe, and I realized that one more time I'd gone back to running my own life. My "Entrepreneurial ADD" was in full swing, as I had 15 things on my plate at one time, all the time. (Sign for the top of the new building ... Finish writing up the lease to buy agreement ... How many tables exactly do we have in there ... Have to get the car back from the mechanic ... Need to do a Through the Bible blog ... Need to do a Thrilled to Death blog [this one] ... Email from an atheist I really want to answer has been sitting for two weeks ... get one son to get his tax forms caught up and work on a corporate tax return with another son ... update the progress blog on the new business so everyone else knows what's been finished ... )

I promised myself in the hospital I would never do that to myself again.

I lied.

Yesterday I repented, and I've been asking God what to do in everything. It's a sick day today, too. In everything I've done, I'm doing one thing at a time. I can feel the Spirit urging me, "Don't pick that book up; you only have one task in front of you, the Thrilled to Death blog. And it's done when it's done, not in a hurry to get to the next thing."

Earlier today, I put something down I was working on—in bed, on a "sick day"—because my dad came in to visit. I took the excellent opportunity to visit, and then I went back to what I was doing.

Next is to get a couple Martin Luther quotes onto my Christian History web site, and after that, outline and prep an early Christian teaching on the church. That's the most I'll get to do today. The videos on apostolic succession—Overview, Clement of Rome, Ignatius, Irenaeus, Tertullian, and Cyprian—is sadly going to have to wait, but that's better than stressing over when to do them.

Step by step, always stopping to check if I feel at peace that I'm devoting my time to things that are worth devoting my time to, never letting my heart latch onto these things, but seeking to present myself properly to my Father in heaven as a living sacrifice. It is the route to the most incredible, perfect peace that carries one through year-long leukemia battles and the rough days of recovery.

Can any of you relate to this at all? Or am I the only one that gets so scattered and busy that I lose sight of everything else?

I'm not doing it anymore.

"Thou wilt keep him in perfect peace whose mind is stayed on you" (Is. 26:3).

Thursday, July 19, 2012

Six Months and Two Days

Just a progress report. I wrote a lot of this in a comment on Tamara's blog. I guess I'm almost a hundred days ahead of her. In some ways, she's doing a lot better than I was doing, but her headaches are something I didn't have to deal with. Feel free to pray for her.

I was at 6 months day before yesterday. Last week I had a day where I fell asleep at every turn, so that I basically slept from a Monday evening until Wednesday morning. It came out of the blue, unknown cause. I usually don't need any nap at all at this point.

I'm weaning off the one steroid I'm taking; one month left. Then I start the Tacrolimus taper. That's the only immunosuppressive I'm taking, and I'm not taking much of it. It builds up in my blood pretty fast. In fact, I think almost all medicines work on me very effectively even in small doses.

I still have ongoing hemorrhoid problems. If I could cure them, I could exercise better and get out more. I've had advice from more than one doctor, more than one nurse practitioner, more than one nurse, and more than one fellow sufferer, so I think I've tried about everything at this point. Most of the advice helps, but the 'rhoids always come back quickly.

Still, I can't complain too much. My energy is very good for a transplant patient, and I can probably walk as far as a lot of "healthy" 50-year-olds.

In fact, I'm already back to overdoing it. I'm back in the middle of church life, going to meetings, talking to people, and I even did a teaching on "the faith once delivered to the saints" over Skype for friends in California Monday night. I'm playing catch-up at my warehouse business, and got a great idea for a new business to put in the empty building my church owns and makes payments on, but which has been sitting empty the majority of the time we owned it. So I'm not just trying to oversee a business, but I'm starting a new one, too!

Well, let's make this a little longer and tell you a funny story.

Monday I had the teaching (over Skype to California) scheduled for 9:00 p.m. Tennessee time. I went car shopping with my wife that afternoon, in southeast Missouri, about 2 hours and 15 minutes away. I went that far because I found a perfect lot for a guy like me. The used car lot sold all cars under $5,000, and they had several under $2,000, including a 1997 Buick LeSabre.

Now understand, I bought a 1997 Buick LeSabre back in 2003 (or maybe 2004). I bought it at an auction, and I learned there that no one wants to drive a Buick like that except African American young men and Caucasian old men. All Buick LeSabre drivers, or almost all, have either black skin or grey hair. Maybe there's a rule out there requiring this (#joke).

Anyway, because almost none of the people at this auction wanted the Buick, I got it for $1700. It had 174,000 miles on it, but it was in excellent condition.

Last year, when I went in the hospital, I gave that car to my son. I had driven it 8 years and put almost 170,000 additional miles on it. I drove it to California and back when it had almost 310,000 miles on it. Completely reliable, and it got 28 miles to the gallon on the highway, even at 75 MPH.

I had to pay $1950 for this Buick LeSabre. It has 165,000 miles on it. It runs great, and I love the gas mileage, power, and room.

Okay, enough about that. It turned out that the owners of the used car lot, a very southern woman and a Pakistani man, were very chatty. So we had trouble even looking at cars because we were having such a good time talking.

Because of this, we didn't leave the car lot until almost 8:00 p.m. There was no way to get back to our house by 9:00 for the scheduled teaching.

So we opted for Dyersburg.

There we stopped at a Burger King that had wi-fi. It wasn't working. We drove from there, following Google maps on my iPhone, which seems to be getting worse, not better, to find a McDonald's, which always has free internet. Google maps said there were three McDonald's on one block. That was weird, and as it turned out the only McDonald's was inside WalMart.

To put the final nail in the coffin, I got a great phone signal in Dyersburg, but it was all Edge. No 3G! Selmer is smaller than Dyersburg, and we have 4G!

I can't Skype over an Edge network.

By then, it was very close to 9:00, so I gave up and drove to the nearest place we could get a bite to eat quickly. I found a Dairy Queen, and we went in.

I asked if they had internet, and they told me that if I sat in the back corner of the restaurant, I could probably pick up the high school's internet.

It turned out I could, but weird things were happening when I tried. My computer was just randomly disconnecting. I tried restarting it (thank God for 30-second MacBook restarts; a Windows computer would have taken up to 5 minutes), and it worked!

I opened Skype at 9 p.m. sharp.

At that point the Dairy Queen had two other people in it. No big deal. We were in the back corner, and I would talk quietly. DQ closes at 10 p.m. in Dyersburg, so it was really quiet in there.

My friends got on, but they were still cleaning up from dinner, so I chatted with a couple of them while we waited for cleanup to finish.

Finally, they were ready. I got ready to start, and a ridiculously loud male voice announced from the entry door, "Hey, you better get ready! Got a whole baseball team coming in."

Yeah, it was. About 30 people came in, and they were the loudest, most inconsiderate batch of people I've ever met in the South.

I pressed on, anyway, occasionally having to stop to laugh at the absurd situation.

It turned out that it was the birthday of a lady in the party. So about 9:45 everyone in the restaurant sang a rousing round of "Happy Birthday to You" while I, my wife, and our friends in California laughed even more.

My wife told me afterward that the guys at the table next to us, who made absolutely no effort to keep their conversations at even a normal sound level, made occasional mocking comments about the things I was teaching. Ah, well. They did a lot worse things to Jesus and to many of his disciples through the centuries. I keep thinking that someone nearby enough to hear me—I was trying to be polite and keep my conversation as quiet as practically possible—was meant to hear the things that were taught. We talked about unity, about the essentials of the faith that history and the Scriptures say the apostles gave to the church, and about the real standard of unity, which is the Spirit of God inside us and our obedience to Jesus.

Hmm. I always find a way to turn a short post into a long one. I have to go. Lots of other stuff to do. Thank you, everyone, for sticking with me over this last year.

A friend suggested two tablespoons of oil—coconut or olive—with every meal to help with the hemorrhoids. I can use the extra calories anyway, so I'm definitely going to try it. I'll let you know how that works.

Thursday, July 5, 2012

Getting Stronger ... With Setbacks

In a couple weeks it will be six months since my transplant. If I had a desk job I had to be at 40 hours per week, I could do that, but I would have a lot of sick days—2 or 3 per month plus the monthly day-long trip to Nashville for checkup. I also would not be able to guarantee that I could come in at the same time every morning. There were a number of times in June that between an upset stomach and hemorrhoids, I wasn't fit for the public until 10 a.m.

I wrote that to add my story to the several I've read about how quickly one can go back to work after a bone marrow transplant. The best I've heard is a guy who was back to work full-time after two months!! Another man told me he couldn't work full-time for five years, and then he relapsed with a different form of blood cancer.

My job's not like that, though. I'm the boss again, so I get to set my own hours, and I can do a lot of work from home. Some days I'm up early, and I get in 12 hours of research, writing, and being available by computer and phone for the folks at work and for the church. Sometimes, I need a nap by mid-day.

The last couple days were rough. I'm weaning off of steroids. The only steroid I'm taking is Prednizone. I was taking 30 mg, and they weaned me down to 10 mg. Then they got me off Cellcept, an immunosuppressive. Now that I'm done with that (since June 18), they had me drop to 7.5 mg on the Prednizone.

At the same time, they had me lower the only other medicine that suppresses my immune system because there was too much of it in my blood.

The result was that Tuesday and Wednesday of this week reminded me of February in the hospital. I went down hard. I slept from Monday night at 7 pm until 5 pm Wednesday morning with only a few waking hours. I was exhausted, and I felt as purposeless as I had in the bad days in the hospital.

Wednesday morning, I decided to get up and go to "water day" with the other folks in my community. I tried sleeping all day Tuesday, and that didn't help, so I just pressed on Wednesday morning. I carried chairs down to our big 60'x90' tent, and I watched kids (and adults) shoot each other with water guns while I chatted with friends and walked around a bit to try to get my energy up.

The result? I practically collapsed by noon and slept hard and deep for three hours.

Today, I got up feeling no better, but I had a Christian writers guild that I wanted to go to in Collierville, about and hour and a half from my home. I was driving with a good friend who is the manager of my business and semi-officially the head elder of our church. I was really looking forward to the writers guild and to the time spent with my friend. So I got up and went.

I'm not sure what happened. I had a delightful time, and my energy grew the whole day long. I'm typing this after 11 pm, and I feel as good as I've felt since I've been back home.

I do have to say the last couple days got me to slow down, focus on God again, and wind up feeling really at peace and under grace. Only two months, and I had let myself get really busy and somewhat tense again! I promised myself I'd never return to that kind of lifestyle after I got out of the hospital.

I should know better than to trust my well-meant promises to myself.

But grace came in the form of a couple really rough days and, once again, in the form of my beautiful and amazing wife. She gathered up my whole entire stack of papers from work, called my secretary, organized all the paperwork with her, and delegated some ridiculously large amount of my to do list to other people.

That was the paperwork from my current business. I'm also starting another one! For some reason, for the first time in my life I came up with a really great and necessary business idea, got lots of other people involved, and created a lot of very enjoyable work for myself. My wife helped me with that, too, finding me a great main person to make sure the business gets started properly (for no pay at all to start), and arranging several meetings with key people who can help me.

Okay, so that's what's happening with me nowadays.

Physically, the hemorrhoids (sorry for bringing those up, but they've been a central part of my life for a couple months) have limited how much I could work on running and walking. I have no problem walking over a mile, though, even if there are hills, and I can now do real, proper pushups. A proper pushup for me is to go down far enough that my chest would touch a fist if someone made a fist on the ground below my chest. That's how the military taught me to do a pushup. Two weeks ago, or maybe even last week, I was excited to finally get to where I could do one of those.

So I'm progressing, though I'm still pretty scrawny at 145 pounds fully clothed and in my shoes. I have some loose skin near my elbows on my upper arm that let me know my arms haven't grown back to the size they were before the transplant. Still, progress is progress.

Just thought I'd check in. God bless you all!