Saturday, December 31, 2011

The Home Stretch

Last night, friends at a Bible study prayed for me to be healed.

I wasn't completely sure what to make of such a prayer, though they prayed with my permission and gratitude. You see, there's no proof I actually have leukemia right now, and I've had no leukemia symptoms since the end of July, just one month after I was diagnosed!

What about all those things that have happened to me? Due to low blood and an infectious fever, I had a possible heart attack 8 weeks ago. Even now, my red blood cells are 75% of what they ought to be and my white blood cells are less than half of what they're supposed to be.

Aren't those symptoms of leukemia?

Actually, no, they're not.

They are symptoms of the treatment for leukemia.

And right now the doctors are not treating leukemia; they are treating the possibility of a relapse of leukemia.

We know nothing about the specific type of leukemia I have. What we know of similar leukemias, though, is that they almost always relapse. We are relatively certain that somewhere in my body where we can't see them, there are a few leukemia cells waiting to come roaring back sometime in the next year. If they do, barring a miracle, I'll die a few months later.

So on Monday they'll begin their final assault on those hidden, permanently immature, rapidly proliferating blood cells—the leukemia cells—that they can't find and, thus, for which there is no evidence they exist.

Here's the plan of attack:

  • They will radiate my brain on six consecutive workdays in case those cells are hiding there.
  • They will radiate my entire body six times over three days, which will both assault my bone marrow and hopefully expose any other leukemia hiding places.
  • They will give me high-dose chemo over three days to finish off my bone marrow. One of the chemotherapies can cross the "brain-blood barrier" and go after any leukemia cells the brain radiation missed.
  • They will give me stem cells from two donated umbilical cords to replace my bone marrow. The new bone marrow will produce an entirely new immune system which will hopefully hunt down and destroy those hidden leukemia cells for the rest of my life.

That treatment has proven to be highly effective on the people who survive it.

Thus, when friends pray for me to be healed, they need to realize that they're primarily praying for me to survive the leukemia treatment, not the leukemia itself. I've already been healed of leukemia for five months. I've simply been suffering the effects of some potent poisons that they've put in my body to hunt down the hidden remnant of my cancer.

Monday they begin the strongest assault on my body of all. Even if it works, and the leukemia never comes back, it usually takes well over a year for blood counts to return to normal, and fatigue—the product of treatment and not leukemia—often lasts the rest of the patient's life.

I can't wait.

What are you going to do for the next four months?

I'm going to meet people I've never met before, and they're going to have in-depth conversations with me because they want to. They're going to talk to me about the deep and important things of life even though some of them will be complete strangers prior to our discussion.

If treatment goes as hoped, I'm going to write a book that I hope to have finished before summer is out. Even if it doesn't, I'm going to blog and have email exchanges with people on every continent except Antarctica.

I'm going to go through an experience that my family and friends will share with me emotionally, and we're all going to get closer as a result. If God will give me grace, then my life will provoke them to be a touch more diligent, a little more joyful, somewhat more grateful, and to live their lives with a greater sense of purpose.

Isn't that great!

I think it's great. I think it is far greater than the risk of filling the rest of my days in a lazy comfort. Hopefully, I wouldn't have done that anyway, but now I know I won't do that ... because I can't.

Is that worth a little pain now and some inconvenience for the rest of my life?

Of course it is!

How can it not be? The pros and cons here cannot really be compared.

Don't think that's unusual or that this is the product of some great character on my part. I know a 15-year-old girl who has spent most of the last year paralyzed from the neck down. Her attitude has been great, and I understand from those who know her a lot better than I do that she never complains, even when she's been in pain. (I can't say that, but I don't really feel like apologizing. I've not had very much pain in my life before, so I haven't had any practice.)

That 15-year-old girl is supposed to recover, and she's already gaining movement in her fingers. Feel free to pray for her. Things look real positive.

There are lots of people like that. I've had two friends wind up in wheelchairs. They'll be in those for the rest of their life. I'm not facing anything as difficult as they are.

So, anyway. Here we go. The home stretch starts day after tomorrow.

As an aside, on my Rest of the Old, Old Story blog, I am going to start a day by day commentary on chapters of the Bible as part of a "read through the Bible in a year" program. The purpose of the commentary is to explain enough to make the Bible easy to understand (at its most basic level) and to introduce a solid foundation of faith—a sort of catechism—based on the basics of the faith as taught in the apostles' churches of the second century.

There's a lot of people back home in Selmer, Tennessee who are interested in such a thing from me. You may not be, but it's free if you want to check it out.

Here's a picture for you. One of the rest-of-my-life effects is that I can't get any sun on my skin. It quickly leads to Graft-vs-Host disease (where the new immune system attacks my skin). I don't really want to live my life slathered in sunblock (if I don't have to), so I have begun working on getting comfortable clothing that will keep me out of the sun.

I start this new no-sun policy on January 17, less than three weeks from now. So here's the hat we bought at Dick's Sporting Goods. My wife is researching other sun-protective clothing for me today as well:

Finally, for no good reason at all except I just saw this picture: This is my daughter's elbow. The double-jointedness came from me. My youngest daughter is even worse, and you probably wouldn't want to see my son Caleb show you his shoulder stretch.

Saturday, December 24, 2011

Trial? Adventure? Obstactle Course? A Story!

Last night my daughter put on a movie called Australia. In it, Hugh Jackman says:

No one owns anything except their story, and I'm trying to live the best one I can.

Something like that, anyway.

If your health is not helping you live (and tell) a better story, then it can be better to be sick.

Leukemia's been an addition to my story. It hasn't taken away from it.

Someone told me the other day that I'm like the Eveready bunny. I just keep going no matter the ups and downs of this disease. That was a wonderful compliment. That's what I hope I'll do to the end.

I want to help you see this adventure in my life from my perspective. Hopefully, it will help you take on the adventures in your life and write a great story.

To me, I'm in the Lord's army. I'm one of those weak, pitiful soldiers raised in American luxury, unfamiliar with suffering, but I've been allowed in because the Lord is merciful. Despite my weakness, I have the same goal as the strong soldiers. We're advancing the kingdom, overthrowing the evil ruler of the darkness of this world, and proclaiming freedom to his captives.

Training to become fit for this purpose involves trials, just as all training involves trials. "No pain, no gain," as they say in the gym. If you want your muscles to become stronger or your skills to improve, you have to attempt things that stress your muscles and your skills.

So now I'm in the middle of an obstacle course. Obstacle courses vary. That's the nature of obstacle courses.

There are spots, like now, where I'm just jogging along in ease, moving towards the next obstacle. There are obstacles well within my skill level, and I climb right over and through those, looking like a trained athlete. There are other obstacles, though, that are really hard. On those, I struggle to get over the wall. I slip and fall; I look silly; and I only succeed after numerous attempts. Even after succeeding, I may wind up on my knees on the path, panting for breath.

So when something else happens, I don't say, "What? Another problem? How could this be?"

I say, "Of course there's another problem. That's the nature of obstacle courses. Someone put that obstacle there on purpose, and I agreed to run this obstacle course. The great Captain of our army knows my strength and skills better than I do, and he has put me on this obstacle course to run to the end."

So I don't want it to stop. I want to get to the end, and I even hope that I'll finish with a good time compared to others that have run this course. That's the nature of obstacle courses; they're competitive.

Courtesy of Wikimedia Commons, public domain

Dodging obstacles ruins the competition. I have to get through or over every one.

Picture this. A U.S. Marine runs an obstacle course, staggers across the finish line, then snaps to attention in front of his sergeant. His sergeant, secretly impressed at the time and performance of this marine, says, "Are you okay, private? You looked pitiful there at the end."

The marine replies in a loud, strong, firm voice, "Sir, I feel great. I'm ready to do it again, sir!"

How do you react? I suspect most of us are not only impressed, but something inside of us steels up and makes us want to be like him.

There's your course, right in front of you; specifically made for you! Don't skip any obstacles; look bad on the hard ones; look great on the easy ones; stagger to the end; and impress us all.

Count it all joy when you fall into various trials, for the trying of your faith produces patience. Let patience have its perfect work, so that you may achieve your goals and be complete, lacking nothing. (James 1:2-4)

Through [the Lord Jesus Christ] we have access by faith into this grace in which we stand, and we rejoice as we hope of the glory of God. Not only that, but we take pride in trials, too, knowing that trials produce patience, patience produces sterling character, and sterling character produces hope. And our hope does not disappoint because the love of God is poured out in our hearts by the Holy Spirit who is given to us. (Romans 5:2-5)

Thursday, December 22, 2011

It's an Adventure! And an Unusual One at That!

Last night someone was praying for me in a prayer meeting. She prayed for God to take care of me through my ...

She paused when she had to come up with a word for what I'm going through. I have to suppose that "disease" was somehow disquieting to her. I debated whether to pipe up in the middle of a twenty-person prayer meeting to finish her sentence: "Adventure!"

Someone else referred to my "trial," or something like that, when grace was being said before a meal today. I wanted to shout, "Adventure! It's an adventure!"

Earlier today, I was riding to WalMart. My daughter, who just turned 16 and only has a permit, not a license, was driving. It dawned on me that on December 24 it will be six months since I was diagnosed.

"It's been a great six months, hasn't it?" I asked.

My daughter was horrified. "No!" she retorted. "It has not been great."

"What?" I asked. "You haven't enjoyed our time in Nashville?"

"Nashville has been great," she replied. "I just don't like wondering whether my dad is going to be sick every day."

We talked some about trusting God. There's a great line in a movie called The Thirteenth Warrior, when Antonia Bandera tells one of the Norse warriors that it would be better to avoid a conflict.

"Hide in a hole if you want," the Norse warrior tells him, "You won't live one second longer."

That line reminds me of the story in the Bible in which an evil king of Israel (Ahaziah?) went to war accompanied by the godly King Jehoshaphat of Judah. A prophet had prophesied that the wicked king would be killed in the battle, yet somehow Jehoshaphat allowed that king to convince him to masquerade as the king of Israel while the real king of Israel disguised himself among his army. (Good grief.)

A random archer shot an arrow into the midst of the Israelite army, it found a chink in the king of Israel's armor, and he bled to death during the course of the battle.

Basically, he hid in a hole, and he didn't live one second longer.

I believe there may be a lot of randomness in the world, but not for the people of God. All things work together for good to those who love God and are called according to his purposes, and the death of the saints is precious in the sight of God. We can trust him.

On the other hand, my daughter's sixteen. I watched Christmas Shoes (I think that's the name of the movie) the other night, and I thought about what it would be like to see my wife dying like the wife dies in the movie. That would be awful! Then I thought, "Gosh, my wife is going through something similar!"

It's a good thing God is giving us grace.

Earlier in the day, my daughter told me that her friends sometimes know what's happening with me before she does because they read my blog, and she can't.

"You can't?" I asked in wonder. "You have a computer."

She then explained to me that my blog is more blunt than she can handle. She prefers the softened, in-person versions from me or from her friends.


Well, having said all that, here's the current news!

Current News

I'm back home visiting friends and family for a week.

I did tests on Monday. They checked my bone marrow, my spinal fluid, and did a CT scan of my chest. All were good.

Tuesday, I came down with a head cold.

It's seeming better already today (Thursday), so I guess we'll be good to go. I told the nurse back at Vanderbilt, by email, about it, and she prescribed me an antibiotic, which I picked up locally. She is just ensuring I don't wind up something more severe. Also, I have to get better. She told me we can't start if I'm sick.

Despite the head cold, I did a mile on the treadmill today and ran most of it. That's improvement! I get less than two weeks to continue improving, and then we take a big step backwards again.

I'm back to juicing, and I'm being pretty radical about trying to heal the head cold. I'm eating well, except one cookie after dinner tonight, resting a lot, and getting some exercise.

The Unusual Adventure

This is week old news, but I was remembering this today.

Every now and then I hear the word "unusual" concerning my case. I always wonder how unusual (and I still do).

Last week, I saw the "infectious disease" doctor. Dr. Jagasia, the transplant doctor, wanted me to see him about my rash just to be thorough. I mentioned that in one of the last couple blog posts.

I didn't mention the start of the appointment with him, though.

He walked in and said, "I've been reading your chart." He spoke slowly and very calmly, like nothing is a big deal to him. The whole appointment was rather matter-of-fact. "I've noticed that everything in it seems unusual. You have an unusual form of leukemia. You've had a couple fevers, both of them with the same unusual bacteria. You had an unusual heart episode. Now your liver function is unusual, too."

That word gets used a lot about me at Vanderbilt, but no doctor had used it as much as Dr. Dummer, and I'd just met him.

By the way, that's really his name. I have to admit, I would consider changing it if I were him.

So this is an adventure I'm on, but it appears it is an unusual one. I understand my daughter's worry; I've done my fair share of worrying over things a lot less important than the severe illness of someone close to me. But outside the worry, it's been fun. This really has been a gift, a blessing.

Don't let worry steal the joy that's in front of you.

Don't let guilt steal it, either.

You are where you are. It may or may not have been your fault, but God's on your side if you're willing to get on his side. He's not wasting time blaming you for the situation. He's just waiting for to join him so he can help you out of it. He's waiting to prove to you that "in his presence there is fullness of joy and at his right hand there are pleasures forevermore."

And Finally ...

Some of you read my blogs, and you've never heard me teach. I made a bunch of Youtube videos that I call "The Leukemia Tapes." Here's one (from back when I had hair):

If you see it at Youtube, then you'll see the rest of my videos in the suggested list to the right.

I have longer teachings that are podcasts rather than videos. "Podcast" just means that they're audio files. Most browsers will simply play the podcasts, but you can also download them and put them on mp3 players and smart phones. Those are here.

Sunday, December 18, 2011

Riding the Storms of Life

Health News

Vanderbilt did the "heart cath" on Friday. They put dye in the arteries around my heart to check for blockages. I had a 30% blockage, but not in a main artery to the heart. Apparently, that's normal, and it's assumed that most Americans my age have that much blockage.

So that was really good news.

Monday they will check my bone marrow to ensure there's been no relapse, then my spinal fluid one more time, and finally do a PET Scan to do a thorough check for possible infections.

Those are the last tests. Then we go home for a week, and on December 30, they will mark me up in preparation for radiation beginning on January 2.

Riding the Storms of Life

A friend sent me a devotional from the book, Streams in the Desert. I don't know what page or day of the year she got it from. Here are a couple excerpts:

The gospel and the gift of God are structured so wonderfully that the very enemies and forces that are marshaled to fight against us actually help pave our way to the very gates of heaven and into the presence of God. Those forces can be used in the same way an eagle uses the fierce winds of a storm to soar to the sky.

Dear believer, after experiencing the terrible valley of suffering, did you depart with the spoils? When you were struck with an injury and you thought you had lost everything, did you trust in God to the point that you came out richer than you were before?

That's what leukemia has been to me. It's a storm to billow under my wings and lift me higher. It's a route to victory and spoils.

The righteous are bold as a lion (Prov. 28:1). We love a battle.

Some news on Jerry

I've been keeping tabs on Jerry by text. He's had bad back pains that the doctor says are the result of his marrow coming back and creating pressure on the bones.

Even the bad is good. It's pretty exciting.

Thursday, December 15, 2011

Heart News

Yesterday's visit to the cardiologist was pretty exciting. However, don't miss the "I'm Blessed" post from earlier this morning if you haven't seen it. This is just news. That one talks about looking at life through God's eyes. I'm still excited about this road I'm on, and I still believe it's God's path for me.

Once again, thank you for your prayers.

The cardiologist came in yesterday and told me, "We may never know exactly what happened to you a month ago."

He's not even willing to call it a heart attack anymore!

He knew from a phone call I made that I'd really prefer not to be taking the heart medicines he's prescribed, and he was initially very cool about the possibility of letting me drop them. He was open, but clearly felt we needed this "heart cath," which I will have tomorrow, before we even think about letting me off my meds.

The "heart cath" is some sort of scan with dye in my arteries so they can check for blockage. He told me the stress test last month showed no blockage, but it's only 90% reliable. I'm getting ready for a stem cell transplant with full intensity chemo and a lot of radiation. Dr. Jagasia, the transplant doctor, wants the cardiologist to be 100% certain, or as close to it as possible.

As he told me all this, the cardiologist said we'd have to consider the idea of putting in a stent, which seems to be a very tiny operation in his eyes. Probably we'd avoid it, he said, but we have to leave the idea open.

Then, while his nurse explained what I needed to know about the heart cath, he went and read my echocardiogram.

The doctor had already perked up a bit when I told him I'd been jogging a little and could run a half mile. That's a tiny distance for the average person, but he raised his eyebrows at that and seemed more positive.

When he came back from reading the echocardiogram, he was positively jubilant. He said, "Let's get that heart cath, and then you can probably just be done with us."

Apparently, my heart completely recuperated from the chemo and fever. One of the things the echocardiogram tells the doctor is how well my heart empties itself of blood on each pump. Normal is 50 to 70%. Last month, after the heart, uh, episode, they measured mine at 46%. The transplant nurse, Nurse Works (I still love her name), had told me they didn't like that number. Previously, she said, I'd been over 50.

Yesterday it was back up to 60%.

I think the doc liked everything about the cardiogram. I'm not kidding; he was positively cheerful after he looked at it.

So tomorrow, I get light sedation, and they'll stick a tube into an artery, probably the femoral artery near the groin, and inject me with dye. The test takes 15 minutes, I think he said, but I have to lay around for two to six hours afterward while they make sure that artery isn't bleeding. There's a big difference between a vein, which oozes blood as it returns from the muscles and organs, and an artery, which gets a straight pump from the heart.

Then I can't drive all weekend, and I can't lift more than ten pounds for seven to ten days.

Do you ever wonder about statements like that? Seven to Ten days? What do I do on day eight and day nine? Apparently, I stick to the ten pound limit because I have no way of knowing if seven days is good enough. So really, it's ten days.

When she told me about the ten pounds, I said, "What about pushups? No pushups?"

I was really just hassling her. She said no, of course.

Sad, though. I'm weak enough as it is. It took days to get back to being able to do a dozen decent pushups.

Merry Christmas, everyone! And thank you again for the prayers!

Speaking of which, I really need that marrow biopsy and lumbar puncture to be negative (leukemia-free) on Monday. I have to repeat the first round of chemo and get the leukemia in remission again if, God forbid, the biopsy is positive. Basically, it would be almost a repeat of what I've already done! It's real unlikely that would happen, but prayers are most welcome.

Thank you again!

Also, for those of you who don't know, here's a public thank you to Michael of Ireland, who emails me almost daily. He had BPDCN (see tab above) and was in the hospital for 191 days straight during his chemo treatments and stem cell transplant. He reads this blog and gives me advice, having rather extensive experience on this route. He's married with two young children. Thanks, Michael!

I'm Blessed!

Okay, we need to straighten some things out here.

I got some comments and emails today that make it clear I haven't been expressing how exceptionally blessed I am, how grateful I am, nor glorified the will of God in my life properly.

I write about the course that God has given me to run for several reasons. One, it's fun to write about. Two, a lot of you love me and are interested. Three, some of you have told me it's inspired you. Those are all good things.

Admittedly, the course God has me running right now is an obstacle course. There are spots that have been really difficult, and I'm guessing there will be a lot more. That's the nature of obstacle courses.

Obstacle courses are also fun.

Please understand, I like doing this. It's an adventure!

If you've ever seen the movie Lord of the Rings, then you may remember the scene where Gimli, the dwarf, is told that their small army is going to assail the gates of Mordor in order to provide a diversion for Frodo, the ring bearer. They have absolutely no chance of winning this battle, but they're going to attack as though they think they do.

Gimli says something to the effect of, "Terrible odds; certain death; what are we waiting for?"

In 1914 an Irish explorer named Ernest Shackleton placed an ad for a crew to accompany him on a trip across Antarctica. The ad said:


Reports from that era have it that he got 5,000 responses to the ad. (As is my nature, I looked for a good source. My source above is NOVA from PBS, but there's a web site trying to track down the ad, and it appears there never was one, at least not in a newspaper, though there's some decent sources claiming such an ad was used and that there were 5,000 respondents.)

I've never been on an adventure like that.

But I have been on an adventure like leukemia, and I was put on that adventure by God.

I have not only accepted it; I like it.

This is my chance to say, "I've always wanted to fight a battle against incredible odds!"

The odds really aren't incredible. Though the overall survival rate for acute leukemias like mine is only 25%, and acute undifferentiated leukemias are understood to be worse, in my health I had a 50-50 chance from the beginning. It's possible that my chances now are as high as 80%.

Yesterday, the nurse was telling me that one of the risks of the transplant is "veno-oclusive" disease. She said only 10 to 20% of recipients face it. Usually, it resolves on its own.

I asked what happen if it doesn't resolve, and she said, "You don't want that to happen."

She had drawn a graph of what my blood counts would look like and how I would feel on a sheet of paper. The graph had a big valley than represented the twenty days between the transplant and when blood counts recover. She pointed at it and said, "Veno-oclusive disease is one of the ways we lose people in here. Remember, we lose about 20% of our patients during this period."

I knew that. It's still a little stunning to hear it said.

She explained that during that month it's their job to manage pain and keep me alive.

My job, given by God, is to go through this like it's my path to run.

It's not that bad a path. I'm getting six doses of radiation to the brain. Ashimah, a friend of mine back at Rose Creek Village got thirty. Hers weren't whole brain irradiations, but I have a new friend I met at Vanderbilt, and he got twenty doses of whole brain radiation along with his brain surgery. He has a limp that came from the brain surgery.

And beyond all that, I'm a Christian. I'm an amateur historian, too. I have heard hundreds of stories of Christian martyrs who endured incredible tortures by choice.

I don't have a choice. I have to endure this, or I'll die. I heard of one man who was put in a small cell for months, hung by his thumbs from the ceiling. The ceiling was too short for him to stand straight, but it was high enough that he couldn't sit because his thumbs were attached to the ceiling.

His captors got nothing but a bold proclamation of the Gospel of Jesus Christ from him.

My daughter has a web site on the American Revolution. Every time I read about those men, who all had the attitude of "Give me liberty or give me death," I wonder if I could have stood with them. Would I regard the freedom of others as more important than my own life?

Young men and women have given their lives and their limbs in Iraq. Men who are now much older did the same in Vietnam and World War II.

I have nothing at all to complain about.

People have told me they've been inspired by my story. If my minor difficulties can inspire even one or two people, then they are well worth it.

This is my race; my gift from God. I get to practice a little bit of courage and run my obstacle course with lots of company—I have friends, family, and the grace of God.

Hopefully, I won't wimp out at any point, but I've claimed all along that this is a gift! We're Christians. We believe that all things work together for good to those who love God and are called according to his purpose, remember? In our own small way, let's give the world good reason to think we believe that, and God himself will take care of proving it to be true.

If my brain gets a little scrambled from the radiation, and I wind up with the confusion and concentration problems that are a possible side effect, then I'll go through my life that way, and I will glorify God that way, living in joy. Our bodies are not for comfort, ease, or even good health. Our bodies are for the glory of God.

Now, mind you, I don't like losing my comfort any more than any other American does.

But please, for those of you that are Christians, do this with me. Take joy in it. Be glad with me, and pray that I'm faithful to what we believe.

I want you to know one last thing. I keep an open ear to God, should I ever hear him saying he wants to heal me. I believe in divine healing, and I have heard some great stories. Just today Jerry told me about a man who turned down his chemo treatments because the doctors told him that he'd only live a year even with chemo. That was ten years ago, and he's just fine today. This is someone Jerry knows back in Virginia.

There's a guy who blogs two or three times a week about people he's prayed for and who've been healed. Missionary friends in Mexico, in India and around the world have told me story after story after story of incredible healings that have happened through prayer. One of my own nephews was healed of a progressing infection that had blinded one of his eyes after prayer.

I love it when we pray for healing, as long as we keep our ears open for God's answer. We Americans have pitiful faith. We ought to be honest with ourselves about that.

Sometimes, though, it's better to go through what you're going through, and it can be every bit as miraculous.

For example, thank you everyone for your prayers for my friend Jerry. His transplant engrafted sometime over the last couple days, which is a little early. His blood counts are rising, and he's doing great. Today, Hannah (Lorie) and I went to visit him, and we found him on the porch with his wife throwing peanuts to the squirrels. He's had the most incredible easy time, and he's now through half the danger of a transplant.

He's waltzed through this thing so far, and he's as convinced as I am that it's because of prayer. He's got his church praying for me just like I've got y'all praying for him.

Rise up! Believe! Say I'm blessed with me! We all have a race to run, and there is nothing better than the path that God has laid before you.

For you are his workmanship, created in Christ Jesus to do good works, which he has prepared in advance for you to do. (Eph. 2:10)

The Holy Spirit witnesses in every city, saying that chains and afflictions await me, but none of these things move me. Nor do I consider my life dear to myself, so that I may finish my course with joy and complete the service which I have received from the Lord, to testify of the Gospel of the grace of God. (Acts 20:23-24)

I consider everything loss for the excellency of the knowledge of Jesus Christ my Lord ... that I may know him, and the power of his resurrection, and the fellowship of his sufferings, being made in the image of his death. (Php. 3:8,10)

I have fought the good fight; I have finished my course; I have kept the faith. Now there is laid up for me a crown of righteousness, which the Lord, the righteous Judge, shall give me on that day; and not only to me, but to all those who love his appearing. (2 Tim. 4:8-9)

Let's be like the apostle! Seize the opportunity and glorify the Lord!

It's all good. In fact, nothing at all could be better.

Wednesday, December 14, 2011

A Plan That's Written Down

Okay, they gave me this plan on a piece of paper. It's supposed to be the real schedule.

From January 2-6 they give me one dose of brain radiation each day.

While that's happening, I get a pre-admittance on January 2. This allows me to go straight to the 11th floor, already admitted, if I get a fever or have other complications. On January 3, they place a "Hickman catheter" near my clavicle. It has tubes that goes up my carotid artery and also down to the Vena Cava, near my heart. They'll use that to administer chemo and to draw blood.

On Monday, January 9, I get my sixth and last dose of brain radiation. After that, from January 10-12, I get two doses a day of total body irradiation, six doses total.

Then on Friday January 13, I start chemo. I'll be in the hospital for that, and I'll get chemo for three days. On Monday, January 16 (Martin Luther King, Jr. Day), I get a one day break, and then I get the cord blood cells, my transplant, on Tuesday, January 17.

After that, I'm told it usually takes about 20 days for cord blood cells to engraft and for my blood counts to start rising. Then we try to manage (or avoid) Graft-vs-Host disease for another 80 days before I can leave Nashville again. That will be the end of April.

So that's the official plan!

Tuesday, December 13, 2011

Change of Plans ... Again

Dr. Jagasia told me today that I keep throwing curve balls to the transplant team. Between leukemia cells in the spinal fluid, minor heart attacks, and now inexplicable spots—which look like dry skin and they call a rash—on my legs, nothing is simply smooth.

So they're throwing me curve balls back.

It turns out we can't wait until after the New Year to begin the transplant preparation. They want to give me "cerebro-spinal" radiation. That would be my brain and spine. That requires ten doses, done once per day, only on weekdays that are not holidays, and all ten doses have to be done before they start the chemo. So the new plan is 10 doses of cerebro-spinal radiation, then three total body irraditions, then chemo for six or seven days, then a one day break to begin immunosuppressive drugs to prevent rejection, then the transplant.

The whole Christmas break is too long to wait to begin that more than three week process. We don't know yet, however, whether radiology will start next week or the week after Christmas.

First, though, I have to have another marrow biopsy, so I suspect that will have to happen this coming week. And, say the doctor and the nurse practitioner, while they're poking a hole in my hip for the marrow, they might as well poke one more in my spine and get a third clean spinal fluid check.

I did at least ask her to schedule the spinal tap—they call it a "lumbar puncture"—for the afternoon. I seem to be a lot less nervous at afternoon spinal taps.

This will be the sixth one.

Assuming that my marrow and spinal fluid are still leukemia free, and assuming that my heart is no worse than it was last month after the heart attack, they will begin zapping me the week after Christmas at the latest. There's only three workdays that week, so I would only get three doses. Still, that would allow the chemo to start around the January 16th.

I don't think Dr. Jagasia even wants to wait that long. He doesn't trust my version of leukemia not to come back, and he already doesn't like it that it's been two months since my last chemo dose, nor that the last chemo dose was only one medicine. He wants to get the stem cells in there before there's a potential for relapse.

So that was my news for today. Ten doses of direct brain radiation. Nice. I've heard what that's like from others who have had it, though the people I know who've had it got more like 20 doses. At least in this case, I'm getting something in a smaller dose!

I'm rested. My blood counts are up a bit. I don't hurt, I'm not having headaches, and I feel great. I have a lot of artificial courage for this upcoming transplant, as well as having learned some more realistic trust in God over the last five months. Nonetheless, listening to all the news today was a little tiring, as was the pulmonary function test I took. Those who've had a lung test like that know how tiring it can be.

So I took the kids out to IHOP after the last appointment. That was fun.

I got an email later telling me that the nurse practitioner had talked to the radiologist and a schedule has been made. I'll be told about it in the morning. So I guess I'll have more news for you then!

Saturday, December 10, 2011

The New Leukemia Cure: Why It's Waiting

About three months ago, an article came out about a potential leukemia cure. I wrote about it on September 13. It was in many news outlets, though my favorite version was in the New York Times. (It looks like you have to log in to see that story now. Sad. Here's the same story at and ABC News.)

This weekend we're back home in Selmer for a wedding, and I found a Discover magazine with the 100 top stories of 2011. The potential leukemia cure was #10.

It had some information I didn't see in the newspaper articles.

Doctors David Porter and Carl June treated three leukemia patients for whom standard chemotherapy had not worked. They used a harmless form of the HIV virus to carry a mutation into the patient's T-cells that would cause the T-cells to target the leukemia cells and destroy them.

They chose HIV because the dangerous version attacks T-cells. They "disarmed" it, piggy-backed the mutation they needed onto it, and the virus carried the mutation into the DNA of the T-cells.

Or at least, that's what I got from the articles, and I read about five of them.

What Discover explains is that they actually mutated the patients' T-cells to destroy all B-cells, not just leukemia cells.

Each of the patients had Chronic Lymphocytic Leukemia (CLL), a form of leukemia that affects lymphocytes (hence the name). Lymphocytes are immune system cells that come in the form of T-cells, B-cells, and NK (Natural Killer) cells, and in patients with CLL, at least one type of lymphocyte has become abnormal, useless, and is proliferating, getting in the way of other, useful blood cells. When they crowd out the other white blood cells, you are left prone to infection and disease. When they crowd out the red blood cells, you die of anemia.

CLL is the most common form of leukemia, and B-cells are the most common malignant cell involved in CLL.

Thus, destroying the B-cells will cure most CLL patients. In the trial, it successfully put two patients in remission and lowered the leukemia cells by 70% in the third.

Those are great results, but the treatment does not only destroy the malignant cells. It destroys all B-cells. Forever.

This happens because the T-cells are permanently mutated. As your body produces more B-cells, the T-cells destroy them.

B-cells produce antibodies and develop a memory for germs that attack the body. Losing them weakens the immune system. This is a serious side effect of the new treatment. On the other hand, a weakened immune system is a lot better than dying of leukemia because chemotherapy didn't work on you.

There is a treatment for the loss of B-cells, which involved regular infusions of antibodies pulled from the blood of blood donors.

So how does this apply to other cancers and to me?

Will This Work on Other Forms of Leukemia and Other Cancers?

It is possible this will work on other forms of leukemia and other cancers.

B-cells have a protein on their surface known as CD-19. They are the only cell in the body with that protein marker. So the mutation the doctors put into the T-cell caused them to recognize and destroy cell with the CD-19 protein.

In order to use the same treatment on other leukemias and other forms of cancer, they have to find a similar marker to target, one that is specific to that disease.

In CLL, the doctors can determine which cell in the problem, and usually it's the B cell.

The doctors don't know what my abnormal cells are.

Everyone's bone marrow has stem cells which develop into the various blood cells. First they develop into either a lymphoid stem cell or a myeloid progenitor. If they become a lymphoid stem cells, then they'll eventually be either a T-cell, B-cell, or NK-cell. If they become a myeloid progenitor, they'll eventually become either a neutrophil, eosdinophil, basophil, mast cell, or monocyte.

My leukemic cells are stem cells that began to develop, but then went bad before they ever became lymphoid stem cells or a myeloid progenitors. The doctors also can't figure out which type those cells were intending to become.

My cells do have markers like the CD-19 that is on the B-cells. CD-4 and CD-56 are the ones that usually elicit a diagnosis of Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN, see tab above). With that diagnosis, it appears the blasts (the immature cells) intended to become dendritic cells, which are myeloid cells. On the other hand, they used to call that disease NK-cell lymphoma, meaning they were wondering whether the CD-4 and CD-56 markers indicated those blasts were going to become NK-cells, which are lymphoid, not myeloid.

My bad cells have CD-4 and CD-56, but not on the same cells, and the CD-4 is more common. They have other markers (CD-123 and TCL-1), which indicate BPDCN, but they also have CD-10 which is more indicative of a potential lymphocyte.

Acute (fast moving) and chronic (slow moving) leukemias are divided up based on whether the bad cells are descendants of the lymphoid stem cell or the myeloid progenitor. Acute leukemia is usually split into Acute Lymphoid Leukemia or Acute Myeloid Leukemia. ALL has a much better survival rate than AML.

Since they can't determine whether mine is lymphoid or myeloid, they call it Acute Undifferentiated Leukemia, and survival rates for AUL are worst of all, though accurate rates can't be determined because of the rarity of the disease. I'm convinced that survival rates are only worse because doctors have only learned to treat it well in the last five years.

That said, I'm not a blood expert, so I don't know if CD-10 or CD-56 is limited to one certain white blood cells. If so, then perhaps they could use a targeted therapy like they used on those CLL patients, but I would guess that there are not enough cases like mine to find out how to target those markers. Not only would those specific markers be rare, but you would only want to use such a therapy on those that didn't respond to chemotherapy. After chemotherapy, you still have all your white blood cells. Right now, this new therapy destroys one forever.

As for other cancers, the issue will be if they can find a marker that is unique to the cancer cell. That marker will have to be on the surface of the cell because T-cells don't peer down inside of the cells they target.

Anyway, I wrote all that to say that there's a reason that research is progressing slowly on this kind of treatment. They have to see the long term effects even on those who are cured, and they have to find out whether people can handle the treatment. One of the patients developed kidney failure from processing all the dead B-cells.

This was a rather technical blog post. I'll try not to write too many like this, though I love this kind of stuff (especially now).

Thursday, December 8, 2011

There's not much to report on me. I'm at the hospital for my weekly checkup. My white blood cell counts are up, and my neutrophil (bacteria-fighting cells) counts are all the way in the normal range, though at the very bottom.

I figured I'd report on Jerry, who is doing awesome! (Thank you for all your prayers.)

This is a very "newsy" post today, so I figured I'd put you in a leisure mood first. Brian Regan is doing commercials now!

Okay, done with that.

Today is day 8 for him, which means he's on the eighth day after his transplant. He looks great, and he even went to WalMart yesterday (something I have no intention of doing when I'm in his shoes). He insisted that he dodges groups of people, that he moves far away if he hears someone cough or sneeze, and that he doesn't touch anything or even open any doors. And he wears a hospital mask, of course.

The chemo has not yet completely wiped out his blood counts, despite the fact that he's 8 days past transplant. They're getting low, around 2.0 for a white blood cell count, but they're not zero. So I can't say he has no immune system, but his immune system is low and decreasing, not increasing. Also, he's on immunosuppressive drugs, several of them, to make sure that the stem cells he received don't have to fight his old immune system in order to rebuild his bone marrow and create a new immune system.

That's all to say that if he contacts germs, he's going to get sick.

I would just avoid WalMart.

But for Jerry, so far so good. Like I said, he looks great. It's very encouraging for me.

I saw Dr. Jagasia, the head of the stem cell transplant department, at the hospital while he was seeing Jerry and I was visiting Jerry. He told me that I probably wouldn't need another spinal tap. When I told him that seeing Jerry was encouraging me, he said, "Well, you're not getting the same kind of transplant."

Now, when I started that last paragraph, I thought he meant that I was getting cord blood, while Jerry got marrow from his brother. However, though only a few seconds have passed for you since the last paragraph, several hours have passed for me. I started this blog at the hospital, thinking I would write it during my waiting periods. I had early appointments, though, starting at 7:00, so all my waiting periods were shorter than normal. I had to quit writing, and I'm now back home with more information than I had when I started the blog.

Among other things, we visited Jerry while we were at the hospital. He only found out yesterday that his chemo was reduced intensity. It was still intense chemotherapy, but it was not "fully myeloablative." In other words, it's not meant to completely wipe out his bone marrow. His brother's stem cells will have to take care of finishing off what's left.

So what Dr. Jagasia meant yesterday or the day before was that my chemo will be more intense than his. I'll be getting radiation as well. I hate it when the doctor basically says, "Don't get your hopes up."

That's all assuming they agree my heart's up to handling it when they check me next Wednesday.

My trip to the hospital this morning also means that I am no longer without any news.

But first, an intermission if you want one. Brian Regan colored his hair for this appearance on David Letterman, but it didn't stop him from being funny. Don't give up on the first minute. It gets better steadily as it goes along.

Perhaps you've now noticed that I think Brian Regan is funny. Back to other news.

Today I gave a couple small pieces of skin to Vanderbilt's pathology department. I got ringworm on my arm last week, probably from going to the apartment's weight room. We put some antifungal cream on it, to go with the antifungal pill I was already taking, and it disappeared. But I also have some spots on my legs that don't look the same as the ringworm that was on my arm. There's fifteen or so. The tiny ones are round, but the bigger ones, up to a half inch wide and almost an inch long, are more oval and not very even on the edges. They also don't look like ringworm. They just look like dried skin, a little scaly and a little darker than the surrounding skin. They don't itch or hurt. I'd never know they were there if I couldn't see them.

Dr. Strickland told me it looks a little like eczema, but it's really hard to determine the cause of a rash. I have my transplant preparation tests next week, though, so we can't leave it undetermined. So we had his nurse take a couple biopsies to send to the pathology lab.

Rash is a somewhat common side effect of the Cytarabine chemotherapy I had at the end of October. He also told me to change my body wash, in case it's an allergic reaction.

Speaking of Cytarabine, I looked up "high dose" Cytarabine in Google, and I found numerous studies where people had received 2000 or 3000 mg/m2 twice a day for four days. They called this "high dose." I couldn't find any descriptions of Cytarabine being administered at higher doses.

I got 6000 mg/m2 twice a day for six days.

No wonder my blood counts recovered so slowly!

They're trying to prevent relapse, something I appreciate. Dr. Strickland assured me a couple weeks ago that I'm not the only person who's received that high a dose.

Well, back to Rose Creek Village for the weekend. There's a wedding on Sunday we're looking forward to being at. Then I visit with the transplant doctor and nurse practitioner on Tuesday, then all the heart tests on Wednesday. It may be Wednesday before I blog again.

Have a great weekend and a merry Christmas!

Friday, December 2, 2011

Don't Judge a Book by Its Cover

Meghan, the hematology nurse practitioner, called me this morning to tell me that both of the last two spinal taps are confirmed clear (no abnormal cells).

I wanted to write this blog Wednesday evening after the spinal tap, but I've been feeling so much better that I took on the project of reorganizing my Christian history site instead. (If you go there, the reorganization is really only started. You'll see a new Navigation menu, but not too much else is different except the "Teachings" section.)

These ladies ran a half marathon on my behalf
Wednesday I went into the hospital much more relaxed than I have for the last several spinal taps. Thank you for your prayers, as that's the only explanation I have for the difference.

Prior to the spinal tap, I had my blood counts checked and saw the nurse. I usually do that twice a week, but only once this week. It takes about two hours, though there's only about 15 minutes of activity in that time. I go to the hospital and wait for paperwork for about 5 minutes. They give me the paperwork and verify my contact information. Then I wait 15 to 30 minutes to be called into the lab. There they take about 2 minutes to draw my blood. Then I go to hematology and wait about 5 minutes to be called for blood pressure and other vital signs. Then I get put in a room to wait for 45 minutes to an hour before I see Meghan for 5 to 10 minutes. The wait in the room allows my blood counts to come back from the lab before Meghan checks me over for mouth sores and swollen lymph glands and things like that.

My lovely and patient wife endures all this waiting with me. It's nice time together. In the waiting rooms we talk. In the little room for an hour, we sometimes play "Words with Friends" on our iPhones together.

Because there's all that waiting involved, I didn't go straight from the lab to hematology. Jerry was getting the stem cells from his brother, and we wanted to see them.

After my blood was drawn we put on masks, washed our hands, and went to Jerry's room bearing gifts.

Jerry had told us that "day zero," the day on which you get your stem cell transplant is your new birthday, according to the nurses. So Tuesday night my wife and I went to the store for a couple helium balloons and a birthday card.

Have you ever went to the store and felt like you really hit the jackpot?

We did. My wife found "Zero" candy bars. She bought one for Dump, who donated the cells, and one for Jerry, who was getting them.

Then, she found a card with a picture of a bunch of Labrador Retriever puppies. They all had caption bubbles saying things like "Well done!" and "Very good!" Inside, the card said, "The lab results are in. You did great!" We got that one for Dump.

Understand, Dump endured a week of weakness, feeling bloated, and aches and pains in his bones bad enough that Alleve, the only pain reliever he was allowed to take, didn't help. We had to pray for him so he could get sleep at night, and the nurses told him most of those symptoms will last two more weeks. This is a small price to pay for your brother's life, in my opinion (and in Dump's), but it's a price.

So the card was perfect for him.

A great picture of Alaina at the half marathon
We were early, which turned out to be good. We broke into his room excited, wishing him happy birthday and handing out the balloons and candy bars. It was great fun, and my wife told me she saw a tear in Dump's eye, which was very rewarding. (I don't think Dump reads my blog, so I'm mentioning it.)

You might as well go into your new life excited, especially when you have an incredibly difficult, life-threatening two to three week battle in front of you, followed by a less difficult, more comfortable, and almost as life-threatening three month battle after.

You've probably heard the phrase, "Those are good people." The more we get to know Jerry, Dump, and their wives, the more we would say that. They are such a joy.

Oh, and the reason it turned out to be good that we were early is that we came back again after I saw the nurse. We took a risk of being a little late to radiology so we could see Jerry actually getting Dump's stem cells, which the nurse had called "the prettiest batch of cells she'd ever seen."

The cells were pink, but with no other stem cells to compare them to, I can't say whether they were pretty.

Jerry, however, looked awful. He was very red, and he seemed barely awake. His wife, Rayetta, told us he was feeling nauseous, too. Apparently, the anti-rejection medicines (which are primarily to prevent the transplant from rejecting him and attacking his body, not him from rejecting the transplant) are very rough on him. I was glad we'd seen him an hour or two earlier.

Okay, two stories.

Don't Judge a Book by Its Cover

When I finally got to my spinal tap, I was still feeling unusually relaxed.

Then the doctor came in.

It looked like they'd grabbed one of the homeless guys from one of Nashville's street corners, dressed him in scrubs—which didn't make him look any less homeless—and sent him in to do the spinal tap. He then gave me the least polished warning about side effects that I've received and left me with the consent sheet to read and sign. Only he didn't leave me a pen.

Panic began to well up in my chest.

I took a deep breath, asked for a pen, and purposely remembered my reaction to the nurse who did my third marrow biopsy, about three months ago. In a previous appointment I had become worried that she was clumsy and less than professional, but it turned out that she was awesome at giving marrow biopsies. She was quick, accurate (no fishing around to try and get marrow), and gentle.

As I laid down on the table, I thought, "Don't judge a book by its cover."

At the side of the room, I heard the nurse ask, "He said he gets headaches. Does that mean you want to use the #22 needle?"

"No," he said. "Let's use the 20 ... well, let's do 21."

I knew what that meant from the last time. Smaller numbers are bigger needles, and the bigger the needle the more likely you are to leak fluid after the spinal tap. Leaking fluid is what leads to headaches, and low spinal fluid headaches are brutal.

The last doctor I had, who was 10 or 15 years younger than this one, had told me that I was listed as a "slow dripper." It's hard to get the spinal fluid out of my spine and into the syringe. That calls for a larger needle or a very long wait to get all the fluid. That doctor, however, had opted for the smallest possible needle anyway. He told me that he'd surveyed patients, and they'd all said they prefer an extra 10 minutes on the table to headaches after the procedure.

This doctor apparently didn't think that was a good idea.

Just before he came to the table, I heard him whisper to the nurse, "You know what, let's do twenty ... "

His whisper trailed off at the end. I couldn't tell whether he'd just gone from 21 to 20 or from 21 to 22.


I took a deep breath and tried to relax.

It wasn't a problem. I really have been thinking about the things I wrote in my last post. God's in control, not me. And, "don't judge a book by its cover!"

Except the "stick and a burn" that is unavoidable when they give you surface anesthetic, I never felt a thing, which is the first time that's happened. I have always felt the needle going through the muscle sheath deep down near my spine. I know now, from where the Band-aid was afterward, that this doctor went in about three inches lower on my back than the others. Perhaps that was the difference.

The doctor was gentle, continually asked me how I was doing, and struck up a very pleasant conversation while we were waiting for me to drip the syringe full. He was very positive, and he loves his job and the people he works with. It was almost delightful.

Oh, and no headaches on Thursday. Laying around for six to eight hours after a spinal tap apparently works for me. I wish I'd known that the first time.

Sorry, Big Brother, I Guess You're Gonna Die

Dump told me that he met a guy at the hospital who asked him about everything he was going through as a donor. As it turned out, the man had a brother with leukemia, and he'd turned up as a match. Vanderbilt wanted to get the transplant from this man for his brother.

Dump told me that when the man asked him how he could have such a good attitude about going through all that discomfort, Dump was speechless. "Family's family," he thought. Dump couldn't even conceive of the idea of refusing to donate marrow stem cells, and he had no idea what to say to someone who would actually refuse to save his brother's life.

Shortly after, Dump ran into the wife of the brother with leukemia. She told Dump that it looked pretty certain that her brother-in-law was going to back out.

I don't even know how to wrap my brain around that.

The nurse told Dump and Jerry that they would be amazed how many siblings refuse to donate marrow. Usually, this means they go to the National Marrow Donor Program to find a stranger that is a match. Yeah, a stranger that cares more about the person than the sibling does.

Siblings, if they match on the important points in the DNA, are always a better option.

I won't comment further. I don't know what to say. What kind of person ... ?

Well, I said I wouldn't comment.

Maybe I should have put that story in the middle and followed it with something positive. I hope you have a great day anyway.