Wednesday, August 31, 2011

August 31: Other People's News

I got a call today giving me my schedule for next week. That's 6 days in advance, since Monday is not included in the schedule. Earliest I've had it.


Let's start with Don. He's the guy I talked about in the hospital. He got a stem cell transplant from himself. (You can read about that sort of thing on the internet by searching for "autologous stem cell transplant.") They sent him home the day after his transplant, even though he had no neutrophils (bacteria-fighting cells), and he got sick and was back in the hospital two days later. He was still there when I got out a couple weeks ago.

Don, visiting me in hospital
He's out now, and so I arrange to have lunch with him ... and his rabbi.

I'm fifty years old, and that's the first rabbi I've ever met!

We asked him a number of questions, and the rabbi told me a history of Reform Judaism, which is his denomination, and then how Conservative Judaism broke off from that in 1885. There's also a Reconstructionist ...

Wait, wait. This blog's not about Judaism.

Don looked really skinny ... and really bald. I guess I look really bald, too, but I've put on five pounds since I left the hospital.

We met at Noshville, which is a NY-deli-style restaurant. It had a lot of kosher foods, including two beers that they called "Chosen Beer." One was "Genesis Ale," and the other was "Messiah Brew," or something like that. I ordered the Genesis Ale since I've been going over Genesis with my children in school.

Genesis Ale is very good.

Anyway ... Don's blood counts sounded real good to me. His white blood cell count is higher than mine, so he must not be neutropenic (lacking neutrophils) anymore. He has an appointment Friday, and they may let him go home over the weekend.

If the transplant took, he'll just get better and be able to forget he ever had lymphoma. That's what you can pray for him. It's possible he's cured, and if he is, he's done.

The Parthenon (replica, of course) at Centennial Park in Nashville (Tennessee)

Laurie Ann (My Sister)

My sister lives near Nashville ... Nashville, North Carolina.

They got ransacked by this hurricane that just came through. Before that there was an earthquake, though I don't think that did any damage. The hurricane was followed by a tornado watch that caused my sister, in some sort of act of great brilliance, to challenge Mother Nature on Facebook with:

Bring it mother nature. I got God on my side.

That was at 5:34 pm two days ago. At 5:43 pm—9 minutes later—she posted:

Ok Mother Nature I'm sorry. Lightening just struck and we felt it in our bare toes.

This morning, her pet motorcycle was stolen. (Yeah, I meant to write "pet"; that's not a typo.)

This morning, as I was walking, I was thinking about all the things that happened to her. That got me to thinking about what sometimes comforts me. Hardships make great stories. That's not much comfort if you lose a loved one, but it can be great comfort if your house burns down and no one is hurt.

Yeah, I think the storytelling possibilities for the rest of your life outweighs the tragedy of having your house burn down, though I'm assuming you have insurance and are going to get another house.

Then I got to thinking about saying that to someone. "I'm so sorry your motorcycle got stolen, and a hurricane came through so that you're without power for a week. But, hey, think of all the stories you're going to be able to tell!"

It's a good way to get horrified expressions from most people and punched by some.

But I thought, "My sister could handle that. She's a trooper AND a major storyteller. She'd agree it's worth it for the jawing time down the road."

Kids playing at Centennial Park
After the walk, I went to lunch, and we stopped on the way back at Centennial park. We didn't get back until around 4 pm I found another Facebook post from my sister:

i need a break. Earthquake, hurricane, tornado, stolen motorcycle, no power for 5 days, now no internet for another 5 days.

That is rough, but the truth is that as soon as she can get out with friends, she's going to be hooting and hollering, swapping stories, and getting in her word than normal because she's got more to talk about than usual. If those things hadn't all come at the same time, none of them would make much of a story by themselves.

The fact is, when it comes to facing tragedy, I come from pretty good stock. Life can take anyone down; me, my sister, anyone (well, except Jesus himself, and maybe Gandhi, who gave Jesus all the credit—arguments accepted on the Gandhi giving Jesus credit thing later).

Anyway, this is my weird way of encouraging my sister, telling her these sorts of things are right up her alley, and when nobody dies, it's all worth it in the end.


Alaina's my secretary, who's been handling a lot of the financial side of things back at Yachad's warehouse in Selmer. She's also gotten inspired about running, and she's intending to run a half marathon in November here in Nashville with a couple other ladies.

That's Alaina in the middle; Quinn, on the left, ran my first half marathon with me when he was 14 or 15.

I was supposed to try to run a 10K with her this summer, which helped bring my leukemia to light because my training for it was failing and failing badly.

Anyway, she said something about the race supporting the Leukemia & Lymphoma Society's Team in Training program. I'm not sure exactly how that works, but I'm pretty sure you can sponsor a runner with contributions to the LLS.

I looked into Team in Training years ago, and I got very impressed by the LLS long before I ever dreamed of having leukemia myself. Their statistics on the improvement in the treatment of leukemia and lymphoma were very complete, and they're a very up front, open organization. I've never been much of a fundraiser, though, so I didn't follow through on it.

I'm a little more motivated now, as you might guess, so if you're interested in sponsoring Alaina or one of the other two ladies, leave me a comment, and I'll try to find out how you can do that.

Tuesday, August 30, 2011

August 30: Marrow Donors (The Part I Forgot)

I probably should not have forgotten this, but we found out today that the three possible U.S. marrow donors for me are not full matches. They won't do.

I only remembered because my sister left a note on the blog I posted this afternoon saying she didn't want to ride her bike out at Christmastime. (Very wise.) Plane ticket is no problem, Laurie Ann.

David and Laurie Ann repaying me for childhood tortures
Dr. Strickland tells me that if he does use Laurie Ann, then the chances are they'll need to do a non-myeloablative transplant. (I love using that term! Big word, very medical sounding, and I understand all the parts of it. I have just a few words like that, and there's something fun about them.)

So, okay, for those of you who don't have leukemia, lymphoma, or some other disease requiring the replacement of your bone marrow, a "non-myeloablative" transplant is one in which they don't completely wipe out (ablate) your bone marrow (myelo). Instead, they just lower my marrow enough so that the transplanted marrow can out-compete it, take its place, and create a new immune system.

They then depend on that new immune system to blot out not only what's remaining of my blood system, but also to destroy any leukemic cells it finds.

Apparently, my immune system has gotten okay with whatever warped blastic (blastic, meaning immature, not blasted, meaning something I'm mad at) blood cell multiplied itself uselessly throughout my cardiovascular system. My sister's immune system, however, should be horrified at this delinquent, juvenile blood cell—and at all its clones—and should put it to death.

Dr. Strickland explained that this is not best because the chemotherapy should be part of the cure, with the transplant dealing the final blow but being more for recovery than for cure. Myeloablative transplants are like that, but in a non-myeloablative transplant the cure is almost entirely dependent on the transplant.

The problem is that a full, intense, ablative chemotherapy combined with a transplant of marrow that is not a perfect match—thus producing a lot of graft vs. host problems—is too much for some systems to handle. Am I young and healthy enough to handle it? I'm in the debatable range, and that would be up to the transplant committee.

The question is always, what's the greatest risk?

It seemed all the more clear today that Dr. Strickland doesn't want to do the partial match from my sister. He wants to do an ablative transplant, but that requires a full match or close to a full match. For a stranger, that would be 9/10 or 10/10.

They match 6 spots on the DNA with a sibling, making sure that you have the same two genes on that spot in the DNA. With a stranger, they match 10 things, not all of which are DNA issues.

To give you an example that might help. I have brown eyes, but because brown eyes come from a dominant gene, it's possible that I have a gene for both brown eyes and blue eyes. Eye color doesn't matter for marrow transplants, but just as an example, if someone were to match me in the way required for bone marrow matches, they would not only have to have brown eyes, but they would have to have one gene for brown eyes and one for blue eyes. There's 10 issues like that, which is why you're so much more likely to find a donor in as sibling, though even then there's only about a 25% chance.

Somehow, Dr. Strickland seems confident that there are other options besides my sister.

That's weird, though. He said the team was checking cord blood, which really threw me. I asked him, "What do you mean, cord blood?"

He explained that just meant they were checking to see if other people match me.

That doesn't make any sense to me.

He's still talking about checking my two sons that are over age 18. So obviously, by "options" he does not mean that he already has an alternative donor.

I didn't feel like grilling him for hours, so I gave up.

Like everything else, they'll tell me at the last minute.

For example, on the way out today, I asked when to come back. I know I'm to come back Tuesday (next week), but I don't know what time. They checked.

The answer?

They don't know what they're giving me yet, so they'll let me know. Dr. Strickland had some definite thoughts today. He told me about them. This new plan, based on an additional medicine that treats both ALL and AML (I have symptoms of both), would have me coming in Tuesday through Friday next week to receive chemo morning and night each day, rather than Tuesday, Thursday, and Saturday as previously planned.

So once again, they'll call me at some point before Tuesday to tell me when to arrive.

For the first chemo, they called me at the last minute, and when I came in, they still didn't know what they were going to treat me with!

I don't blame them. They're figuring it out as they go, and they were right on target the first time. This is the A team ... first string ... top of the line.

So I'll wait around to hear from them.

Next stop Jacksonville, Florida for a home church conference. We're traveling with four other couples, three from Rose Creek Village and a younger couple from Memphis.

I have things to do. I know that if I don't get a donor, I'm supposed to relapse and die. If my sister is the donor, there's supposed to be dangers and a lot of problems with graft-versus-host disease.

The natural order of things is going to have to excuse me, but I'm not doing that. I have a lot of people praying for me, and I have the Word of God telling me what to do. I'm just going to go ahead and live and do whatever he says rather than worrying about all those other details. I'm very fortunate that God delegated those details to his man of the hour (at least in my life), Dr. Strickland. To me, he's as much God's choice to rule my treatment as Barack Obama is God's choice to be president of the United States of America. (Ha! I couldn't resist that. Romans 13:1-8 is every bit as true as Romans 8:28.)

So with Dr. Strickland appointed by God to succeed at making me live, I'm going about my business, helping to school my kids, writing blogs, and going to Jacksonville to meet others who either understand the church or want to understand the church so that together we can offer survival, security, social acceptance, spunk, and self-realization through the only power able to provide it.

August 30: Biopsies, Scary Nurses, and Schedule Updates

We had a very rapid morning, even though there was a lot of waiting.

Blood was drawn. My white blood cell count and my neutrophil count were both way down but still in the normal range. The doctor told me the numbers were really good, as my red blood cells are still returning. They, too, are almost to the normal range.

The pathologist gets the marrow right at bedside
So I asked him about the effects of the "consolidation" chemo, which is meant just meant to prevent relapse. I had no idea how intense it was. I just knew it was less intense than the original "induction" round, which was meant to put the leukemia in remission.

Dr. Strickland explained that the consolidation round would be strong enough to make me neutropenic again, which means it's pretty intense. My 2150 neutrophils, the immune cells that fight bacteria, will drop below 500. That's a lot of blood destruction.

So be it.

There will not, however, be a second consolidation round. This next chemo, if everything goes as planned, is the end. We're going straight to transplant from there, and Dr. Strickland expects it to happen before December 31.

When he said that, he added, "What a Christmas present, huh?"

I think he meant it was a terrible Christmas present, as far as the side effects. There is the potential for a lot of them. The chemotherapy leading up to the transplant will be short and intense, completely wiping out my bone marrow and blood system, and then there's the issues involved with my body accommodating the new immune system.

Recovery from the transplant takes three months, and then there's all the potential graft-versus-host issues (see August 4 post).

Of course, we all know it's not really a terrible Christmas present. Yes, on my end, it could get rough. The bottom line, though, is that it is the gift of life, and what can be better than that?

Lol, what can be better than that is dying (Philippians 1:21); however, I don't think that's meant to be, and it's not best for anyone but me, so it's not best at all.

Ok, enough of that. Let me tell you about the biopsy and scary nurses.

Biopsies and Frightening Nurses

When I was told the name of the person who was doing my biopsy today, I thought it was the doctor in charge of my transplant because of where I'd seen her name on paperwork.

It wasn't. It was a nurse, and I'd met her once before.

I'm going to leave her name out because of the start of this story. The end's pretty good, though, so I don't mind telling it.

Also, it's all true.

The first time I met this nurse—let's call her Lisa—was when Dr. Strickland ordered the lesions on my back biopsied. He really wanted to send me to some other clinic (Radiology?), but they couldn't take me on short notice. So he had Lisa do it in the hematology clinic.

She was very sweet. She came in, chattering away, and put her stuff on the computer desk in the room. In the process, she knocked a box of paper clips onto the floor.

"Shoot," she said. "You'd think I'd learn. Those paper clips are always sitting there in the way, and I knock them over every time I come in here!"

She picked up the papers, took two small sections of the lesions on my back with only one mishap, then gathered all her stuff in one large blue napkin-looking thing. As she wrapped it all up, she said, "Ow!"

Something in the wrapped up blue napkin had stuck her.

No problem, she threw it all away, and we left.

Vanderbilt has a really nice service, which is valet parking. It's free. You just drive up to the front, take a ticket from the service guy (or gal), and they park your car, then return it later when you give them your ticket.

We went downstairs, waited for them to get the car, got the doors open, and ... my cell phone rang. I answered it standing outside the car with the door already opened.

It was Lisa, the nurse.

She asked if we could come back upstairs, and she didn't say why. Generally, I'm a pretty compliant guy. I just do what I'm told. (People who know me are laughing as they read that last sentence, but don't pay any attention to them. At least in situations like this, what I just said is true.)

We went upstairs, and Lisa met us at the elevator. She was terribly embarrassed. She explained that she told Dr. Strickland about how she got pricked with something when she was wrapping up, and he ordered her to stick to protocol.

Protocol, apparently, is to take blood from the patient and make sure he or she has no infectious diseases.

As I said, she was terribly embarrassed, and she chattered all the way in about how this never happens, and she's so sorry that we had to come back.

They drew the blood, testing only for hepatitis because they had tested for just about everything else in the process of diagnosing my leukemia, and then everything was okay.

We left the building, feeling a sense of peace settle over us which had been missing since the phone call downstairs. As we did, I laughed, and I told my wife, "Do you think that lady is Don Knotts' sister?"

We saw her again a week or two later, and I can't remember what happened. I just remember telling my wife, "See, I told you. That's Don Knotts' sister!"

That was all very funny until today.

Today, she came walking into the room as I was laying with my shorts about as low on my rear end as is fashionable in younger circles nowadays. ("Sagging," as I heard a younger friend of mine once say.)

She was the biopsy practitioner.

She would be taking a tiny hand drill, poking a hole in my pelvis, drawing out a couple very large syringes of marrow, then yanking a tiny bone core out.

They took my blood pressure, and it was 15 points higher than it had been an hour earlier. I tried to relax.

I thought back to Dr. Lammers, who is over six foot tall and surely approaches 200 pounds, leaning over my pelvis, trying to get through my bone. Then I looked at Lisa, who is no more than about 130 pounds. How was she going to do it?

Dr. Lammers prepares for biopsy
"I'm surprised they don't provide y'all with a power drill," I said. "It would make this job easier."

"They do!" She retorted. "But do you really want us operating a power drill over your pelvis?"

Then she added. "You know, my husband won't even let me use a power drill in my garage. You certainly don't want me using one on you!"

She started laughing. I started my Lamaze breathing.

Don Knotts' sister.

At least she didn't actually have the power drill.

The surprise? The only thing I felt was the first shot of Lidocaine. I didn't feel any of the other shots. She never leaned over once. I never felt much pressure on my hip at all. She got through the bone in less than half the time that either Dr. Lammers or Dr. Vesh (back in Corinth, MS) had done. She got marrow on the first try. It took Dr. Lammers two tries, and Dr. Vesh never got any.

When she got done, she said, "Tell Dr. Lammers he's a wimp. I'm stronger than he is."

I told her, "He's going to feel great. First, Dr. Strickland wants me to make sure and tell people that he's more handsome than Dr. Lammers, and now you want me to tell him you're stronger than he is."

Dr. Strickland on left; Dr. Lammers on right
She laughed. Then she said it was probably just luck.

Maybe, but as for me, I take back the comments about Don Knotts' sister. Even now, 4 hours later, my pelvis is not even sore. For now, she's unparalleled; queen of her class.

Monday, August 29, 2011

August 29: Starting Next Round and Important Prayer Request.

We're back in Nashville. We officially moved into our apartment, which is provided for free by the American Cancer Society ... uh, or some other cancer support group. My daughter keeps saying it's not the ACS.

We'll be in this apartment for a few months, till the recovery period from the transplant is over.

Today we went back to appointments. I had a PET Scan today, and I will see Dr. Strickland and possible also Dr. Goebel, who's in charge of my transplant, tomorrow. After that, I get a marrow biopsy. Then I'm off for a week until Tuesday, September 6.

On the 6th I'll start the "consolidation" round of chemotherapy. I'll be given chemo morning and night on Tuesday, Thursday, and Saturday. I think the night time session is scheduled to end around 11 pm each of those days.

That's late, but, hey, at least it's outpatient.

In between, I'm going to Florida for a house church conference. We're really looking forward to meeting some people and learning some things. There are 5 couples from Rose Creek Village going. Since we're leaving from Nashville, we'll meet up with the others in Macon, Georgia on Thursday night.

So that's my news, but you really need to hear Jerry's news. The things that happen to him are unbelievable ...

Prayer Request

Remember how in the hospital Jerry's heart rate dropped from the 70's down into the 40's and stayed there? It almost stopped his second attempt to put his leukemia in remission, but thank God (and your prayers) that things worked out, which is amazing.

Today he called. He was in great spirits, but the news he got around to giving me was chilling.

His brother's heart rate jumped from the 70's to the low 100's ... and stayed there.

Good grief.

Apparently, the cause is a damaged nerve in his chest somewhere. He has an appointment in a couple weeks where they are going to stop his heart, burn the nerve (somehow healing it), and then restart his heart.

Real safe, huh?

With this operation, two lives are on the line. Dump is Jerry's brother, and he's also Jerry's marrow donor. Jerry's heart hasn't been good for a long time. He had a heart attack a few years ago. He doesn't need the trouble that will come from having a mismatched donor, and his brother is a perfect match.

This should really have gone before my news, I think.

Thank you for your prayers.

Friday, August 26, 2011

August 26: No Time for News Today, But ...

Because Steve Jobs is resigning as Apple's CEO, several news sources are carrying his 2005 address to Stanford University's graduates.

He had cancer, too—pancreatic cancer—so his address definitely qualifies for being included on my blog. Even if it didn't, it would be well worth it. NBC has it not just in words but the video as well!!!

You can read it faster than Jobs speaks it, so you can read it in 7 to 10 minutes or listen to it in 15. It will be some of the best minutes you've ever spent.

Oh, if you're one of my children who is still in school, do not click on the link! Mom wants to do this as part of school. Wait for it ... wait for it ...

Wednesday, August 24, 2011

August 23: It's All Still Good

You can't see, but this is my "It's all good" t-shirt.
Yesterday, I wore the shirt that little Katie, 5 years old, gave me for my 50th birthday. It says, "It's all good."

While I was in the hospital, I got asked, "How can you say 'It's all good' when you're enduring chemotherapy, mouth sores, hemorrhoids, and hospital food?" (I added the "hospital food" part for effect, but it's appropriate.)

It's the goal, not the path, that matters.

Consider it a great joy, my brothers, whenever you experience various trial, knowing that the testing of your faith produces endurance. But endurance must produce its complete work, so that you may be mature and complete lacking nothing. (James 1:2-4, Holman Christian Standard Bible)

Mia Hamm, considered by some to be the best women's soccer player ever, once said that the picture of a champion is not one of a person at the end of a match with her arms raised in jubilation. The correct picture of a champion is a person bent over, sweat dripping from her forehead, gasping for breath long after everyone else has gone home.

Is that fun? Does a person feel great when he's covered in sweat and gasping for breath far away from the jubilation of a sports match? Is it a joy to limp around the day after an extra long workout, having to grab the table to lower yourself into a chair to eat dinner?

But it's all good because the champion's eye is on the goal.

A couple days ago I got a book in the mail. It's called The End of the Spear, and it was signed by the author, Steve Saint, son of martyred missionary Nate Saint. It said:

Shammah, Thank you for being a mentor to Austin and a great example in difficult times to the rest of us. Steven Saint.

You should read Steve Saint's story. Difficult times? I don't know anything about difficult times. What an incredible honor!

The same day or the day before, someone I don't even know wrote on Facebook that she was laying in bed, not wanting to face the day, and she thought of me in the hospital. She then said she dragged her healthy body out of bed to take on her day.

So are those things worth laying in bed, being in enough pain to talk about hemorrhoid treatments with a female nurse I don't even know.

Yeah. Without a doubt.

That's why it's all good.

[Jesus], for the joy that lay before Him endured a cross and despised the shame ... Consider him who endured such hostility from sinners against Himself, so that you won't grow weary and lose heart. (Heb. 12:2, HCSB)

For Jesus it was betrayal, abandonment by friends, a whip, a crown of thorns, and finally, crucifixion. All for the joy that was set before him.

Photo by Kabir, used with permission

What joy?

Winning me. Winning you. Giving us a better way to live.

Steve Saint's father was speared by a primitive South American tribe. Afterward, they hacked his father's body with machetes.

No surprise. 60% of the deaths among the Waodani were murders.

Steve Saint's aunt went to her brother's killers to show them a better way to live. Eventually, his father's killer would become a mentor to him.

(It should be noted here that Elizabeth Elliott, wife of Nate Saint's friend Jim Elliott, went with Steve's aunt to her husband's killers to show them a better way to live.)

I've seen a video of his father's killer in India, far from his tribal home in Ecuador, wearing clothes and teaching pastors how to perform dentistry in primitive Hindu villages in order to help make an open door for a Gospel that teaches men and women to love, to treat each other as equals, and to stop killing one another.

It's one small part of the joy that motivated Jesus the Christ to despise the shame of his condemnation and endure the pain of the whip, the crown, and the cross.

I can see Jesus, despite the incredible tragedy of the situation, looking down at bystanders and whispering, "It's all good."

I've Got to Add ...

Jesus Christ was God's Son, the eternal Logos (see my book, In the Beginning Was the Logos), and for him being a champion meant the most incredible suffering and winning the world.

Most of us have lesser goals and lesser suffering.

Most of us also seriously underestimate the power of a kind, brave, and stable heart. People not only notice such a heart, they lean on it. Such hearts affect others unnoticed because only a few who lean on such hearts talk about the benefit they've received.

Kind, brave, and stable hearts are not born into human beings ... at least not into most human beings.

Most of us have a long road to kindness, courage, and stability.

I believe we're made by God and that his intention for us is to be of benefit to everyone around us. (Who can deny that it's a human's greatest joy?) I believe the route to kindness, courage, and stability is not easy because he meant for us all to feel the thrill of being an overcomer—a champion; conquering ourselves to become someone that is useful every day.

I believe Jesus died to give us the power to walk that route. We don't have to do this alone. We can actually be among those who are empowered by the Spirit of the Living God.

It's not always a glamorous route, and self-denial never gets to feeling good.

But there's magic in that route.

A rough route? Yeah. But it's all good.

Thursday, August 18, 2011

August 18: Adapting to Home

So I'm home. Now I have to figure out what to do with my life.

The birds that showed up to watch my marrow biopsy
It would be easy to get to rushing and worrying. There's medical bills and insurance issues to address. There's some loose accounting issues at work that I wasn't able to finish or turn over before I went in the hospital. There's a couple work issues that I both can and want to help with, and I have to figure out where to put that in my schedule.

Further, one of the goals I have for the second half of my life is to let writing become my career. If that's going to happen, there's some work involved. I have to make a habit of writing articles for magazines. I have to get skilled at preparing submissions for those articles. I have to write a book proposal for Thrilled to Death, find out how much of the book has to be written, and then determine whether to submit it to a literary agent or directly to a publisher or both.

I want to expand the web sites I started for the purpose of making money ( and and add a couple articles to the web site I do as ministry ( I also want to help with my kids' home schooling. In fact, I already did a class with them yesterday to get started.

It would be easy to turn all of this into a very busy schedule, return to being a hard worker, and forget about being a people person. I've already had so many people in and out of the RV this morning that I thought about putting a "Do Not Disturb" sign on the door.

That is not where I want to go with my life.

Sevierville, TN (has nothing to do with this blog post)
I'm sure there will be times I'll need to get off alone to finish a book or article, and taxes and insurances are part of all of our lives. Nonetheless, there are only so many hours in a day and packing work into all of them is a poor way to live unless it's temporary and for a specific purpose. (I have to admit, though, in my mind I can already come up with possible exceptions; not for me, but for others: The Thomas Edisons of this world and those like them.)

We must never forget—in my opinion, anyway—that Jesus Christ said the two greatest commandments were to love God with everything you are and to love your neighbor as yourself.

Both those commands have to do with relationships.

Life is about relationships. There is nothing as satisfying as knowing that you have enriched the lives of those around you, whether by some service or by just being friendly.

Health News

I add this part for two reasons. There are actually people who are caring enough to be interested in how I'm doing day by day; their care amazes me, and I'm not sure I could duplicate it were our roles reversed (I'm embarrassed to say). But the other reason is that there are others who might just be interested in what it's like to go through at least this type of chemotherapy.

Also in Sevierville, TN
I got out of the hospital yesterday, and I was very excited just to run.

The problem is, between a very fast two-mile walk in the square corridor of the hospital the morning I left and the lingering effects of the neupogen shot, my legs were as wobbly as I ever remember them being.

On top of that, I've been on absolutely level ground for almost five weeks. Outside of a building, nothing in nature is absolutely level. It took a little adaptation to get used to stairs and humps and hills.

We left the hospital to cover the whole 3 hours back to Rose Creek Village, but we did stop at the apartment in Nashville, which is being provided for free by a cancer organization. There I got out, despite my wobbly legs, and trotted along the sidewalk. I went a grand total of about 200 yards, with a walk in the middle, which was somewhat hard.

So there's a lot of work to do.

Yesterday, I could still feel the weakness in my legs, so I didn't run at all. I was also exhausted a lot of the day. I took two naps, one of them for a couple hours, and I still went to bed at around 9 pm and slept all night.

I really think the neupogen shot has my body working overtime producing blood cells. I'm very curious what my blood counts are now, but there are no morning blood draws now. It's weird not knowing my hematocrit percentage and my white blood cell counts.

Today, I felt better. I ran most of half a mile. My legs didn't want to work real well, but the running wasn't hard. I should be in shouting range of a normal amount of red blood cells, and thus a normal amount of oxygen, so there seems to be hope for improvement.

Publicly Speaking About Leukemia

Last night we had a meeting at town hall so people could hear about what was happening with me. Some of them were getting their first glimpse of my shiny, white cranium. (I'm spending a few minutes each day out in the hot sun, trying to rectify the odd whiteness.)

I spent most of the first part of the message talking about things God has put in front of our community. We've got people spread all over the world, some in Mexico, some in Africa, and some in California and Memphis. One young man's getting involved in Teen Challenge locally, and I've been reading about a young lady doing volunteer work in Memphis.

I have to add that two of my sons are saving up for an extended trip to India this winter to be trained for missionary work, personally invited by Pastor K.V. Daniel. That's very exciting to me, of course.

There are a lot of exciting things happening with us here at Rose Creek Village, but part of the reason for talking about those things was to remind myself of something God keeps showing me over and over: It's not about me.

One more from Sevierville
It's so easy to talk about what's going on with me. That's fine for a blog that's about what's going on with me and what I'm learning. In person, though, there are people, and it serves no one at all for me to be focused on myself and on what's happening with me.

Finally, I talked to everyone there about what I say to everyone everywhere about going through this rather minor trial of mine. (I not only know of people, but I have friends who are going through much worse.) There is only one route to preparing for the big things that come in your life, and that is by making good choices in the small things. God gives you a chance to prepare every day for what's going to come your way later in life. You can embrace that, or you can grumble and complain.

Your choice.

There is a pretty interesting book that first put in my mind that everything that comes my way is preparation for becoming a godly man. It's called The Inward Journey by Gene Edwards. It's from a Christian perspective, written by a guy who's a very creative but a little looney. So, I love and recommend the book as real helpful, but you'll definitely have "What in the world is this guy saying?" moments.

I think there's a law now requiring me to let you know that I have an Amazon associates account that will earn me a small commission if you use that link to buy the book :-).

Tuesday, August 16, 2011

August 16: The End of Part One

So my neutrophil count, apparently, is 9520. That would be significantly over 500.

I had a little trouble believing it when I saw it on the computer. Actually, Hannah and I laughed about how everything was going wrong this morning. Even the test must be messed up.

But it's not.

The nurse said it was possible those counts were correct, and the doctors said they were correct.

So I can go home with no prescriptions and no restrictions. Clean bill of health, have a good day, but come back because we have to keep monitoring to make sure the cancer doesn't come back. I still have to do the consolidation rounds, and I still have to plan on a marrow transplant in the next few months because it's probably that my leukemia will refuse to stay in remission.

But for now, I'm healthy. My white blood cell counts sky rocketed to higher than normal, but they'll stabilize as I get the rest of my red blood cells back. I'm at about 75% of normal now.


A Couple Stories I've Got To Throw In

These both involve Dr. Watson, the young intern who took over Doc Halliday's spot when Doc Halliday moved to a different floor.

First, there's yesterday. Hannah asked him if people constantly said "Elementary, my dear Watson" to him.

Are you ready for this? He told us, "No, actually. Most people say, 'Dr. Watson, I presume.' And then they say to me, 'I'll bet you hear that all the time.'"

Hannah and I started laughing. "Dr. Watson, I presume," is the wrong doctor. It's "Dr. Livingstone, I presume," and it's from the story of Dr. Livingstone, who traveled to Africa, preached the Gospel, and became a terror to slave traders. His story is awesome, though there are people who dispute it.

Dr. Livingstone was missing for years, and then a reporter found him, old and injured from a lion bite. After searching much of Africa, the reporter walked up to him and said, "Dr. Livingstone, I presume."

Great line, but it has nothing to do with Dr. Watson, who was Sherlock Holmes' sidekick.

Story #2

It turns out Dr. Watson read a lot of my blog yesterday. He said he liked it, which was encouraging.

Then he mentioned my comment, from yesterday's blog that leukemia is a cool disease. He told me that he thinks so, too, but he's really not allowed to say that because it's so devastating in people's lives. Obviously. Dr. Watson's a compassionate man, but also he's studying and trying to heal a disease that is extremely complicated and fascinating.

He told me that people ask him on social occasions whether there's a cure for cancer on the horizon. He then has to explain to them that cancer is a million diseases. As he began to explain what he meant to me, commenting on Flt-3 markers and other such cellular abnormalities, I realized he's just talking about leukemia. Just leukemia is a million diseases.

So complicated, so many possible abnormalities. So many drugs that work, and so many that don't work in seemingly the same situation.

Nonetheless, they're winning. It used to be that every decade you could see the survival rates for leukemia and lymphoma rising. Now, it is probably more fair to say that the survival rate rises yearly. Great progress is being made.

So I'm glad I got to say that leukemia is a cool disease.

And I still really love that lizard's saying: "I've always wanted to fight a battle against incredible odds."

August 16: Going Home?

If you've been reading this blog, then you know that going home is just temporary. There's still a long road ahead of me.

Nonetheless, I'm ready to go home for 2 or 3 weeks. I'm ready for to feel sunshine. Sunshine is in some way related to happiness. People who live in far northern or very rainy countries (or states) are more prone to depression than people in sunny states. I've been inside for 32 days!

But alas! No blood would come from my PICC line this morning!

I don't really understand how this tube that runs from my upper arm to the vena cava above my heart can turn into a one-way valve, but this is the second time it's done so. They can run saline solution through the line into my heart, but no matter how much they pull (with a syringe), no blood will come out.

Usually, they draw blood at 3:30 or so. Today the nurse was in at 4:15, which is no big deal. That's still plenty early. I was a little anxious because I'm waiting to see if my neutrophils are above 500 per cubic millimeter, but 4:15, that's okay.

Yes, I was awake from 3:30 to 4:15.

But the nurse couldn't get a single drop of blood no matter how much she flushed that line. (And you can only flush it so much because the solution is going into my veins.)

So she ordered something they call TPA or ATP or APT or some other order of the letters A, P, and T. That medicine is injected into the PICC line and left there for an hour.

We had to do that a week or so ago, although we did that in the evening before the bloodwork was being drawn last week.

Today, we had to wait for the pharmacy to send the medicine up. It came at 5:05, and it would have to sit in the PICC line for an hour.

More waiting.

At 6:00, the nurse came in to try again. It still didn't work.

She explained that usually the medicine clears the line in an hour, but sometimes it takes longer. She said she'd wait a bit, then try again.

I said, "Can you just use a needle and draw it from a vein in my arm?"

She seemed a little surprised, and she said that normally patients don't ask to be stuck, but she could do that. I want to see my labs, so I wasn't going to let a little needle prick stop me.

So, the results?

Well, she took the blood about 6:05, and it's 6:45 now. I don't know yet! I just checked, and it's still not there. The nurses tell me that the whole ward is pulling for me to be over 500 on the neutrophils, so I'm sure my nurse will be in here as soon as it pops up on her screen.

I just thought the story about this being dragged out just a bit longer would be worth telling.

Monday, August 15, 2011

August 15: They're Ready for Me To Go Home

My neutrophil count was 390 this morning. That gives me a decent shot at hitting 500 tomorrow.

Dr. Reddy wants to help me do that, however, though she gave credit for the decision on one of the residents (as a joke, I'm pretty sure). There's a shot called Neupogen that increases production from the bone marrow. Don told me they gave him a Neupogen shot to get stem cells into his blood stream so they could remove them for the transplant he got last week.

So I don't know if they need the room for another patient or whether they want to help me go home, but I should be released tomorrow if nothing goes wrong. Dr. Watson said he'd get my paperwork and prescriptions done today so that tomorrow, if my neutrophil count is over 500, they can just pull my PICC line and send me on my merry way.

The (Hopefully) Fun Stuff

I decided to sleep in this morning to see if extra sleep would get my blood production up. (That was before I was told that I was going to get a Neupogen shot.)

So first the janitor comes in, the young man I mentioned in an earlier blog, and an expression of shock crosses his face. I rolled over, saw him, and said, "I decided to sleep in today."

He said, "If you're still in bed, then anything could happen today. It could snow today!"

I guess I must have been up every time he's come in to clean the room. It was only about 7:30.

He immediately got buzzed to go to a meeting, so he didn't even stay to clean the room. I went back to sleep, and I didn't wake up until Hannah saw the doctors outside our door. (She was up.)

She woke me up, and I sat up in bed. She told me the doctors were outside the door. I glanced over, saw them, then turned back to her and said, "Is my hair okay?"

Is my hair okay?
Apparently, that caught her by surprise because she laughed for a while.

So, it's almost 11 a.m., and we're hanging out here. There was a lot of emails to answer, and this blog post to write. Hannah's answering emails, too. I did drop in on Don, who's doing a lot better, though he's hooked up to a very full IV pole. It even has an additional pump down at the bottom with a cord with a push-button switch on it. Whenever he wants, he can push the switch, and it will give him a shot of morphine. He's had some pretty bad intestinal cramps.

As I said, though, he's doing a lot better. I need to get back over there and see him soon.

I haven't seen Jerry this morning, either, but he's in the same state I am. He's just waiting for his immune system to grow back. He's mostly healed up from the pains, irritations, and exhaustions of the chemo, so it feels a lot like just hanging out.

Thanks for joining me on this journey!

And thanks again for all those prayers for people. If you're one of those praying people, you can not only pray for Don to get all the way better, but there's a couple—Mr. and Mrs. Darcy—that are in the middle of the chemo treatment. He's the sick one, and he's having pretty much the same issues I did, which I won't mention again here since I'm talking about someone else. It will be a week before his body gets the ability to heal itself, so pray for much grace for him. I know he'll be needing it.

Mrs. Darcy is a long-distance runner, so I see her on the exercise bike a lot. We can't do long-distance running in the hallway. Too much chance of laying out a sick patient attached to an IV pole, which would be ... well ... unfortunate.

Sunday, August 14, 2011

August 14: News and Risk

Today I'm putting those of you that read my whole blog to the test. This first part, with news and a story, is not that long, and some of you will just want to read that. The parts on leukemia and the risk involved are much longer, but for those that are curious, I think it answers a lot of questions.

My neutrophils were at 300 this morning. That's a jump of 90. It seems very unlikely I'll hit 500 and be out by tomorrow, but maybe by Tuesday. I got ahead of the game and arranged for a curry dinner cooked by my dad Tuesday night. I sure hope I don't miss that!

We'll see. I'm reminded every day of the importance of just staying in God's plan.

On the other hand, we have a saying back at Rose Creek Village, where I live, about "grace running out." When God has you doing something, there's this incredible provision of patience and energy to follow through on it. But as the job comes to an end, the grace seems to run out. Instead of being focused on the day to day, your mind begins to dream of home and rest in preparation for the next task God has for you.

Hannah and I are feeling that way. I spent a little time looking out the window today, wanting to get out in the sunshine, enjoying the green I could see between the buildings of west Nashville.

In fact, I even noticed how empty the sidewalks were on a Sunday afternoon and called the nurse to ask if I could walk outside a bit. Another nurse had told me that if cabin fever began to set in, they'd try to get me outside during a time when not many people were around. So I asked.

Joy—that's this nurse's name—looked a little terrified at the thought of asking, but she assured me that she'd give it her best shot.

She returned a few minutes later ... apologizing. She'd asked two doctors, and they'd both said no.

Not long after, Dr. Watson, the young intern who replaced Dr. Halliday as the person who checks us each morning, came in my room. He said, "I had to check on you. Are you okay? They told me you were really needed to get outside, and I told them, 'That's impossible. Mr. Pavao's like the best patient we've ever had.'"

I laughed. I told him that I'd simply noticed the empty sidewalks and what a nice day it was and was acting on a nurse's suggestion from a couple weeks ago.

Dr. Watson told me that if I really desperately needed to get outside, then he'd consider it (note he carefully didn't say "allow it"). Then he told me both that if I picked up some infection outside and was stuck here another week or two, he'd never forgive himself. Further, he said, did I really think it was worth the risk, small as it was, to go out today in a neutropenic state when I'd be released in a day or two anyway?

Rather than walk outside, I decided to go visit Don, who was released on Wednesday but readmitted Friday (more on that in a sec). As I walked by one of the nurses stations, one of the nurses told me, "We really tried. I tried to tell the doctor you were really depressed, but he wouldn't believe it."

We laughed, and I had a good visit with Don.

Which, I suppose, probably drives Dr. Watson's point home. For some reason, Don was allowed to go home while he was completely neutropenic. His neutrophil count—according to him; I didn't see a chart or anything—was zero, but they sent him home, anyway. Two days later he was back with a fever and gastrointestinal problems.

He had a lymphoma, and he got a transplant that was "autologous," which means he got his stem cell transplant from himself. They harvested some of his own "hematopoietic" stem cells while he was in remission from the lymphoma, ran his white cell count down near zero, and have his own stem cells back to him. So maybe there are rules that apply to his situation that don't apply to those of us with leukemia.

Those rules didn't work too well, though.

Jerry and High Risk Procedures

If you are prone to worrying about me and you're not good at trusting God, you probably don't want to read the rest of this post.

Jerry gets better every day. He's full of energy, and he's happy. He also is ready to move on. He's already anxiously checking his neutrophil count each day, even though it's pretty much impossible that they'll bump off zero for another two or three days. In most cases, they shouldn't increase for another five days or so.

I went to visit him night before last, and Dr. Strickland was in paying a friendly visit. He told me that he was going to drop in on my room, too, but I'm glad that didn't happen. Jerry asks a lot more questions than I do, so it was a lot more informative with both of us talking to him together.

Jerry said, "Let me ask you the big question."

Dr. Strickland said, "Oh-oh."

Jerry asked, "Let's say that I make it all the way to transplant. What are the odds that I'm go into remission and stay there."

Dr. Strickland was surprisingly straightforward. "40 to 45 percent," he answered.


I don't care much about statistics like that. I'm not a statistic. I'm a child of God, and I don't believe leukemia can kill me. My Father will call he home when he wants to, in the way he wants to.

So odds are nothing.

But because I never think of the odds, they stun me as much as they might surprise you.

45 percent?

I have a really cool disease. This is not one of those things where you just thank God for modern medical treatment and unless something really unusual happens, you're going to be just fine. This disease kills in a year or two in most cases.

Back when I thought I had Blastic Plasmacytoid Dendritic Cell Neoplasm—because that's what the pathology lab diagnosed—I had read that BPDCN responds "well" to intensive, AML-style chemotherapy.

I read that in an abstract, which is a paragraph summing up a scientific paper prepared by researchers. A wonderful friend told me that because he works for a university, he could download the whole paper for me for free. I asked him to do that, and he sent it to me.

It turns out that responding "well" to intensive chemotherapy meant that almost 50% of the people went into remission successfully.

What about the rest, you ask? They died in a few months.

Because Vanderbilt was unwilling to confirm the BPDCN diagnosis, and because they weren't able to define my leukemia in any traditional way, the doctors had to talk with people throughout the United States about how to treat me. They decided on a standard, intensive, AML-style chemo with the addition of another medicine usually used to treat ALL, a leukemia found most commonly in children. I got only a light regimen of the ALL chemo.

What was the likelihood of that working?

As Dr. Strickland likes to put it when talking about me, "There are no data."

Did you know data is a plural word?

I think it's fair to say that 50-50 is the best I could have hoped for ... IF my life was under the control of statistics and not God.

And then there's the 50-50 shot of the marrow transplant succeeding. Plus the additional possibility that even if it does succeed that graft-versus-host disease will give me problems for a year or more or perhaps even for the rest of my life.

That's probably why the last official survival rate at 5 years for AML, which is the leukemia Jerry has and to which mine is the most akin, is 24.7%. Dr. Strickland says it's more like 1 in 3 nowadays.

As the lizard in The Last Starfighter once said, "I've always wanted to fight a battle against overwhelming odds!" (Note: Don't watch that movie. It's not clean. I saw it decades ago.)

Graft-versus-Host Disease

GVH is pretty interesting, though having it is potentially awful.

In most transplant cases, you have to worry about the host—the person receiving the transplant—rejecting the transplant. For example, if a person receives a kidney, the danger is that his or her immune system will attack the kidney as a foreign invader.

But in a bone marrow or stem cell transplant, it's the immune system that's being replaced. The danger is not so much that my body will reject the transplant, but that the transplant will reject my body!

Thus, it's "graft" versus "host." The bone marrow or stem cells "engraft" themselves in my body, and I'm the "host" for the transplant.

Dr. Strickland explained that they have to balance the drugs that suppress the immune system. You want the immune system to grow and to be strong enough that if there are any leukemia cells lingering, that the new immune system will destroy them. But you don't want the immune system to reject the entire body and begin to attack the skin and organs.

So it's a balancing act, and the hope is that as you give the new immune system just enough rope to work, it will grow used to the new host, accept it, and my and my new immune system will live happily ever after.

A Little More on the Risk

The way this works, as you'll know if you've been reading this blog regularly, is that they give you a massive dose of chemotherapy that knocks your entire blood system and your bone marrow, which is responsible for producing your blood system, down to almost nothing. Hopefully, this takes out all the cancer cells, and what's left of your bone marrow completely rebuilds itself, but healthy.

In the meantime, they keep you alive by giving you other people's blood and keeping you in a sterile environment, usually with a steady, relatively large dose of antibiotics.

That's what is going on with me right now. Dr. Strickland, Dr. Greer, and whoever else was involved in designing my therapy did an excellent job, and the chemo did exactly what they wanted it to. Now, my blood system is growing back.

They'll do at least a couple smaller rounds of chemo, which are just designed to hopefully nail any loose leukemia cells that might have been missed by the first intensive round.

Depending on your personal health, your age, and your type of leukemia, they might do several of those "consolidation" rounds and hope that does the job for you. The older you are, and the poorer health you are in, the less likely you'll survive the sort of intensive chemotherapy they have to give you to prep your for a transplant. Also, with some forms of leukemia, you may have a good enough chance of staying in remission that it's not wise to try a marrow transplant.

When you get the first round of chemotherapy, they give you chemicals for about 7 days, and then they let the chemicals work for another 7 days. When they do the transplant, they give you much stronger chemicals for a shorter amount of time. They can't mess around with second tries. They have to devastate your immune system down to nothing, then get the other person's stem cells inside of you.

Not everyone can handle that. Dr. Strickland says that at age 50, I'm right on the line between those younger than me, most of whom would qualify to face a transplant, and those older than me, most of whom wouldn't.

With my disease, the odds of my staying in remission after chemotherapy might as well be zero, so it's transplant for me no matter what. There is an alternate plan involving a less intensive chemo if I can't handle a normal transplant, but that's not best in most cases.

Anyway, the whole process can fall apart at the outset. It happened to Jerry. His first round of chemo didn't work. It only got about 60% of his cancer cells.

That did a number on Jerry's attitude. He had an abscessed tooth that couldn't be treated while he was in chemo, he had no energy, and he generally felt awful, and now they were going to have to start chemo all over again.

He asked about going home, and the doctor said he could do that, but he would be dead in 6 to 8 months.

Dr. Strickland then explained that here at Vanderbilt they specialize in round 2. They're excellent at finding the right combination of drugs that will do what wasn't done with the first round.

Jerry gave in, and Dr. Strickland was right. The drugs of choice were so good that Jerry's blood counts showed the drugs were working within two days.

The problem is that Jerry came in with a bad heart. His heart rate inexplicably and suddenly dropped from the 70's to the 40's. They stopped his second round of chemo.

That's when I got everyone praying (thank you!). The cardiologist came in and said Jerry was fine and could continue, but they had to discontinue one of the drugs he was getting.

During all this, Dr. Strickland told him that for AML patients, they were usually successful 50% of the time on the first round, but on the second round it was more like 40%. Jerry asked about what they did on the third attempt, and Dr. Strickland wouldn't answer.

As it turns out, a nurse explained that if two attempts at that first round of chemo don't get all the cancer cells, then a complete reevaluation is needed. Mostly, though, no one can withstand three rounds of chemo in a row, so they send you home for a while and possibly try again later. Probably, though, two failures means you're incurable.

So there's a lot of pitfalls that can happen along the way.

I keep remembering the words of Psalm 23. Who would have thought they would ever apply to me so much!

Yea, though I walk through the valley of the shadow of death, I shall fear no evil. For thou art with me, thy rod and thy staff, they comfort me. Thou preparedst a table before me in the presence of mine enemies. My cup runneth over.


Saturday, August 13, 2011

August 13: News and a Rant

Today my neutrophil count is 210, which is only disappointing because the doctor suggested it might be at 300 today.

Ah, well. Forward is forward. I'll make it out of here in God's time, I'm sure.

A Rant About Antibiotics and Complete Stupidity

So today I read an article on antibiotic use in turkey farms.

This is a Scientific American article, not some environmental magazine.

According to the article, 84%—EIGHTY-FOUR PERCENT—of the type of bacteria they tested are resistant to multiple antibiotics in poultry farms.

This happens because of the "prophylactic" use of antibiotics. That means they are using antibiotics "just in case," as a preventative measure. Ongoing use of antibiotics in that manner ALWAYS produces super bugs, bacteria that are highly resistant to antibiotics and thus highly dangerous.

As I write this, I'm hooked to an antibiotic IV because chemotherapy has destroyed my body's ability to fight bacteria (though that 210 neutrophil count I mentioned above is a small step towards my immune system returning). The doctors hooked me to that antibiotic because I got a blood infection. The antibiotics fought the infection because my body couldn't.

Can you imagine what would have happened if that infection was from bacteria that are resistant to most known antibiotics? Don't imagine. I'll tell you. I'd be dead or close to dead already.

Everyone knows that the widespread use of antibiotics creates such super bugs, but almost no one is doing anything about it.

Do you use an antibacterial soap in your bathroom? Yes, that's correct. You're not protecting yourself or your kids from anything. You are simply helping us grow super bugs, both on your skin by washing with antibiotics and throughout our society by dumping the antibiotics into the sewer system.

Here's how things work. There are very few medicines that kill all the offending microbes. The medicines just kill most, knocking whatever disease or infection you have down to a level that your immune system can handle. Your body then takes care of the rest.

The microbes that survive the medicine are those very few that are immune to the medicine. If you do that occasionally, that's no big deal because our immune systems or nature take care of those few antibiotic-resistant bacteria.

But if you do that all the time, those antibiotic-resistant bacteria begin to proliferate.

You're helping with that when you buy those antibiotic hand soaps, and poultry and livestock farms help with that when they give antibiotics to their animals as a matter of course for "prophylactic" purposes.

In San Francisco, a law was passed banning toys in Happy Meals at McDonald's in an attempt to stop kids from eating too many french fries. McDonald's, worried about their bottom line, has begun doing things like offering apple slices with their Happy Meals.

Personally, in public matters like that, I think education works better than legislation. Look how effective education has been with smoking! What was cool in the 60's and 70's is now looked down upon everywhere.

But things like the overuse of antibiotics in those awful stockyards and poultry farms, where conditions are so deplorable that there's hardly an American alive that isn't horrified when they hear about it? People don't know, and they don't have much way of knowing. It is there that legislation ought to be occurring.

Currently, legislation is directed at making sure those super bugs don't make it all the way to the consumer, but no legislation is directed at preventing the conditions that create the super bugs.

That seems both stupid and immoral to me.

Friday, August 12, 2011

August 12: Booting Up

So I've got this new MacBook Air, courtesy of several friends and relatives (thank you!). The thing that stands out on it is watching it reboot.

The first time I had to reboot it, I treated it like a Windows PC. I set it down, did something else, and came back to it. I was only busy with the other thing for a minute or so, but the MacBook was sitting at the login screen. "No way," I thought, so I logged in and rebooted it again. Only this time I watched and time it.

17 seconds.

Yeah, 17 seconds from when I clicked restart until it was back at the login screen.

It turns out that was particularly fast. Usually, it takes closer to 20 seconds.

Shutting down takes 7.


Anyway, the point of all that is that it got me to thinking that chemotherapy for leukemia is like a reboot on a Windows computer. If you run a Windows computer too long, you start accumulating errors in the registry and in the RAM, and things start going haywire.

So my white blood cell system went haywire, making it so that my red blood cells—necessary for transporting oxygen throughout my body—couldn't do their job. In fact, they were dying off until I only had about half of them left.

So the doctors scheduled a reboot.

They have these medicines that completely wipe out the white blood cells, not only in the blood stream but all the way down in the bone marrow where the "blasts" are made that become the white (and red) blood cells.

Once everything is wiped out--an incredible accomplishment involving multiple medicines all designed to hit their peak at the same time--then the doctors just quit and wait for the "hematopoietic stem cells" that are left to proliferate and "reboot" my entire blood system. (Hematopoietic stem cells are stem cells that can only become blood cells, but they can become any kind of blood cell.)

The chosen measure for when that's accomplished is neutrophils, the white blood cell responsible for fighting bacterial infections. Hitting a count of 500 is the equivalent of finally reaching the login screen on a Windows reboot.

Your blood should have about 4500 neutrophils per cubic millimeter (that's 1/1000 of a milliliter). Less than 2500 and you have a problem.

I have 150 today. As I said, I get to go home at 500 and finish building an immune system on my own.

So currently, here's my stats:

White blood cells: 1600/cu. mm., headed towards 7500
Red blood cells: 31% of blood volume, headed towards 45%
Hemoglobin (molecule in red blood cell that carries oxygen): 10.3, headed towards 15 or 16
Platelets (stop bleeding): 144, should be over 300, but 150 is considered acceptable

The doctor just came in. There's always an advance doctor that comes in before the whole team. He said hoping to be out by Monday (3 days) is reasonable, and Dr. Reddy may even let me out earlier.

Whoo hoo!

Tomorrow makes 30 days in here. An entire month, and I've never passed the dreaded double doors:

These are the doors I can't pass

The hall from my room. Double doors are in the hall to right. I turn left to do laps in the morning.

Making Good Use of Time?

I've become much more of a people person in here. I spent a couple hours getting this MacBook set up yesterday (transferring files from my previous computer), and I didn't just feel compelled to press through until I was done. In fact, I got to feeling weird about sitting there alone, and I went to visit Jerry. Happened twice.

That's a good thing. People are more important than computers. If you're not dodging your duties, they're more important than work, too, which should be obvious, but becomes less and less obvious with each passing year in America.

The team of doctors just came in. One of the young doctors said, "You ought to hold a pool for what day you're going to hit 500."

Great idea, but I think it's too late for that. At this point the choices are probably limited to Sunday, Monday, or Tuesday; not enough choices for a good pool.

I also got a visit from a volunteer "chapel representative." In other words, I got a visit from a Christian trying to minister in the hospital (commendable). It was a lady, and she turned out to be a real delight. She asked if we could pray together before she left. I have got to do that more with people.

Thank You!

Thank you for all your prayers for Jerry and for me. Jerry's like a different person since the announcement about the clean biopsy. He walked 20 laps yesterday, which is over 3/4 of a mile. I think it was only three days ago that he was getting help to walk two.

He's had a Bible sitting on his bed, too, since the chaplain suggested he read through Psalms to help him maintain trust and a positive attitude.

Wednesday, August 10, 2011

August 10: Good News!

For all of you who have been praying for Jerry, his biopsy was clear. I just got back from his room.

Jerry's new look
The timing was perfect. I got there while his wife and brother were still crying tears of joy. Jerry was praising the Lord rather vocally.

As for me, my neutrophil count, which needs to get to 500 for me to be released was at 40 this morning, up from 10 yesterday. My personal medical news is boring, but boring is good in the hospital.

Actually, it's kind of weird. I wake up each morning lately with a nurse putting the best possible spin on my blood counts. It appears the nurses are at least as excited as me about my blood counts going up (which is very heartwarming). After that, however, there's nothing medically. My next "exciting" issue will be at 3:30 or so tomorrow morning when they take my blood, and then when the nurse comes in to tell me about my counts sometime between 5 and 7 am. That will be followed by another 24-hour wait.

So it seems like a long boring stint, but it's really not boring. The last two mornings, Don has shown up with coffee and a newspaper. He's free to go to the cafeteria downstairs, which serves Starbucks coffee. He just automatically gets me one (which his insurance is paying for, but I don't think three 20 oz. coffees is going to constitute abuse).

But now Don's gone. They released him today, just 24 hours after his stem cell transplant.

I guess it's pretty easy when the stem cells are your own. No risk of rejection; no graft-versus-host disease.

He does have to stay in the Nashville area and come in regularly for the rest of the month, which is 3 weeks.

When I do mine, which won't be my own stem cells, I'll have to stick around for 100 days.

Jerry and I are planning how we can make sure we're both in for our consolidation rounds together, and maybe our transplants can happen at the same time, too.

A Weird Story

For whatever it's worth ...

This morning, Dr. Reddy told Jerry it would be no earlier than 1 pm before he got news on his biopsy. So my plan was to go over there about 1:15.

Lunch came right at 1:00, and my wife isn't here, so I flipped on the TV to see if NCIS was on. (Now you know I'm not really all that spiritual.) It was, but when I was done eating, I thought, "I really need to go see Jerry and find out his news."

Take this however you will, but I felt like God told me, "Sit yourself right down, relax, and watch this program till it's over. You need to relax some, too."

That's a convenient word from God, huh?

I did spend some time praying for Patrick Beard rather than watching the commercials, just in case you think there's any redemptive value in that. If you get a chance, you should follow that link I just gave you, and if your giving is not maxed out for good causes, Patrick's is a great cause--at least if you're a Christian because there's some excellent preaching going on in Ethiopia through them as well as the help they give for poverty-stricken families and for education.

Okay, sorry for that divergence.

Anyway, as soon as NCIS was over, I got up and went to Jerry's room, only to walk in while his wife and brother were still crying from the good news. He was vocally praising the Lord, which I somehow doubt was his habit prior to being in this hospital, and one phone call after another was happening passing on the news.

In other words, I walked in at the perfect time, right at the height of the celebration.

Every now and then, God speaks to me about little things--wait till NCIS is over--sometimes, I believe, for no other reason than to say, "I'm paying attention, I'm for you, and I care."

I'm not special or unique.

Tuesday, August 9, 2011

August 9: I'm in a Movie


My neutrophil count, which went to zero yesterday, is back at 10. They have to be at 500 for me to go home. White blood cell count continues to rise, and is now at 1.4. The doctor tells me that as the stem cells proliferate into white blood cells, there's a hierarchy. Lymphocytes first, monocytes next, and neutrophils are further down the line. Hopefully, that 10 is the beginning of a rise.

On the other hand, I don't want to lose sight of the fact that getting out of here as quickly as possible is not my purpose. I have a road to walk, following the Spirit of God, and if he's not in a hurry to get me out of here, then I don't need to be, either.

Finally remembered to get a picture of Jerry
Also please keep praying for Jerry. His biopsy is in about an hour.

Don, too. He got his stem cell transplant, which is from his own stem cells harvested when he was in remission, is today. There's no danger of rejection because they're his own. I guess you can just pray that it takes, and he'll spend the next year or two waiting to see if it really did as indicated by his lymphoma not returning. His lymphoma manifested as a brain tumor ... twice. He said it was really unpleasant, and he'd like never to have to do that again.

The Fun Stuff

This morning, as I was walking, Dr. Watson stopped me and said he wanted to introduce me to someone. He brought me to a room, and we both performed our obligatory duty of washing our hands in the antibacterial foam. Then he opened the door, and Dr. Watson introduced me to Mr. Darcy.

I guess there's no need to sneak off to a movie; apparently I'm in one!

It seems Mr. Darcy just got here, and Dr. Watson was telling him I'm an old-timer now, and I can "show him the ropes." I'm not as outgoing by nature as I've been acting for about 25 years, so that made me a bit nervous. I introduced myself, told him what room I was in, and told him he could feel free to give me a holler any time.

Don and I; a nurse called us "the toxic twins."
Later this morning, though, Don brought me some Starbucks coffee. He's free to go downstairs to the cafeteria and get some, whereas I'm confined to this floor.

We went for a walk afterwards, and we ran into Mr. and Mrs. Darcy. I had seen Mrs. Darcy this morning riding on the exercise bike, reading a book. She's a little older than me, but she was cruising right along.

As it turns out, Mrs. Darcy is a marathoner who's run in the Boston marathon before. She used to run up to 100 miles per week, but she's down to 30 or 40 now. She still runs 10K's, and likes to hang out at the parties afterward, though she doesn't drink.

She, Don, and I talked for what must have been a half an hour, hanging out in front of one of the nurses stations, which are at every corner of the square set of halls that make up 11 North.

Lunch is about to come, and I don't think I've been in my room at all this morning. In fact ...

I'm typing this update on my first Mac. It's a MacBook Air, courtesy of very dear people who shall go unnamed. My wife arranged for it with other people's money. It was sitting on my bed with a "happy birthday" note from my wife when I came back from talking with Mrs. Darcy.

I opened it, held it with a sense of awe and joy that I'm sure approaches idolatry and I probably need to repent of, and then plugged it in to let it charge. I then resisted the temptation to play with my new toy ... uh, tool ... and left it to go see Jerry so I could catch him before lunch and his biopsy soon afterward.

A chaplain was there, a friend of the pastor of the church that Dump--and I think Jerry, too, though I'm pretty sure Dump (Jerry's brother) is the more faithful one--attends back in their little community of Harman, VA.

This is Dump, Jerry's brother
We had a very enjoyable talk about trusting God versus trusting ourselves, and then the chaplain had to drive out to Bristol, Virginia for something or other. He said he'd be back Thursday evening. Chances are, I'll still be here, so I imagine I'll see him again.

And now, I'm finally back in my room trying out my new, uh, tool. I have to figure out what the equivalent of a "home" and "end" key is on a Mac yet, but I'll figure it out eventually.

I also have to get my fingernails clipped so I don't cut up these new keys with my razor-sharp nails! They won't let me clip my nails while I'm neutropenic. I'm supposed to just file them!

I have to admit I may break that rule this afternoon.

I've never cut myself clipping my nails in my whole life, I think, and I've been on this planet for half a century now.

Monday, August 8, 2011

August 8: Who Am I To Be Fabulous?

Who am I to be fabulous?

Who am I not to be?

Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. ... And as we let our own light shine, we unconsciously give other people permission to do the same. (Marianne Williamson, A Return to Love.)

Today, a nurse told me that patients like me, with a good and positive attitude, are a minority. We talked a bit about the benefit of being a fighter, and then she said, "Of course, no one takes such earth-shaking news well when they first hear it."

I did.

I didn't say anything because it seemed like pride to say something.

But the fact is, I spent most of my adult life preparing to hear news like "You have leukemia." I was ready, and I was not caught by surprise, although I had no idea that I had a disease that's fatal to about 2/3 of the people who get it.

We don't have to wander through life being hit by every wave that comes along.

We can learn to trust. There is something inside of us that knows that there's a God. There's something inside of us that wants to bow down when we see the majesty of life and shake our fist at heaven when we see things we don't understand.

People who live life only on the outside, only on what their eyes see and on what their logic can calculate--such people are living half a life.

There's an inner life that teaches us to be good. It teaches us to trust God ... no matter how we visualize him. He's far beyond our understanding anyway.

It let common people recognize Jesus as something special when he came along, while the theologians fought and argued against both him and God his Father.

You're made, and you ought to cultivate that inward thinking and feeling that can give you peace and make you truly fabulous--beneficial to everyone around you.

Takes practice, though, and the longer you don't practice, the harder it is to begin.

Medical News

My neutrophil count dropped to zero. Sad, since it needs to go to 500 for me to leave the hospital. The doctor says she isn't going to worry about that until day 28. Today's day 25.

My other blood counts are rising. My platelets--the cells in your blood that form clots to stop bleeding--jumped a lot to 39. (150 is supposed to be the miminum, and 300 to 400 is more normal, but we hematological chemotherapy patients regularly drop to 11 or lower before they transfuse us with platelets to get us up to 30 or so.)

So, we'll see. My white blood cell counts are up to 1.2 (which is 1200 cells per cubit millimeter of fluid), but my neutrophils are zero percent of those 1200.

Normal white blood cell count is 7.5 or so, and the neutrophils are usually about 45% of those 7500 cells per cubic millimeter. So, in shooting for 500, I need both the percentage of neutrophils and the total white blood cell count to go up.

I'm still healing from side effects of the chemo, though, and one nurse told me the cell counts would climb rapidly once that's done. Close, then.

Hospital Food

Don and I met with the new manager of the hospital kitchen and one of the general managers of the nutrition staff. It went unbelievably well. The general manager told us that there was no arguing with what we were saying.

The manager of the kitchen is new, but he said he initiated a "heart healthy" menu at the last hospital he was at. He said he would make it a priority as soon as he learned the ropes of his new job. He's only been here a week.

The general manager promised brown rice rather than white for the remainder of the meals here, and she said she would start working already on getting whole grains added to the menu.

The kitchen manager seemed pretty competent, so we'll see how it goes. I'll be coming back here several times over the next few months, so I'll get to follow up.

Have a blessed day, everyone!


Oh, and Jerry's biopsy is tomorrow. We desperately want him to have a clean one! News about the results on Wednesday! He's looking better every day, and the old-timer nurse, Martie, tells us that his blood counts look like they should.