Thursday, September 29, 2011

September 29 Update

I got my call today. I'm officially turned over to the transplant team.

I go in Thursday and Friday to run through all the tests. The new nurse practitioner in charge of my case, who is Nurse Works even though I live by grace :-P, tells me that the tests will be "rigorous." I know that I get a new echocardiogram, a new EKG, a new marrow biopsy, and some sort of test I've never heard of that checks my bones. I don't know what else there is, but I imagine there's more.

Nurse Works (who was very, very nice and professional like all Vanderbilt staff, and I don't mean any offense when I make weak puns about her name) says that it will take less than two weeks to get from the tests to transplant. They get approval from the insurance and order the cord blood, and then they zap me with radiation and chemicals.

It's a funny thought to think that they'll spend two days making sure I'm healthy enough to survive their attempts to kill me!

As one doctor once put it, chemotherapy is an attempt to poison a cancer patient and hope it kill the cancer before it kills the patient.

Hey, we're all going to get old and die anyway. We might as well rack up the experiences while we can!

The Scriptures say, "Teach us to number our days so we may present to you a heart of wisdom" (Ps. 90:12). Usually we think of that as meaning that we ought to remember how short our lives are, and I'm certain that's how Psalm 90:12 is meant. However, it seems to me that it's taken a pretty long time for these last 50 years to pass.

In the scheme of things, my 50 to ? years on this earth are really but the blink of an eye. But from my viewpoint, it seems like it's been 50 years and that I've been able to get a lot done in 50 years. If I manage to stick around 20 years or more, I can picture getting even more done. I'm a smart cookie compared to the naive, terrified, yet overconfident nut that I was in 1981.

That's all to say that I think I'm okay with going through a little chemotherapy, radiation, and Graft-versus-Host disease, though I really hope it's as easy as possible. I'm okay with being limited in my activities for a while. I'm chubby, slow, and my hips tend to hurt anyway. Due to my hips, I need about 5 times as much warmup as my sons to play sports, and after I'm warmed up, I'm twice as slow as they are. If a stem cell transplant slows me down for a few years, I suspect I'll figure out how to make it through the rest of my life just like I'm doing now.

I met a guy in California last year who has some sort of nerve problem in his upper spine. He's in pain all the time, though it's a little better because they've snipped three nerves. I can't speak for him. I've had nerve pain, as has my wife (for about two years!!), and I can't imagine living with that kind of pain.

I don't have answers for all of life. And maybe this experience will be so rough that I'll just hate it. I think, though, that God has planned out my future, and I'm fixing to go through something that is to prepare me for the rest of my life.

Sounds kind of exciting; I'm very curious how this is all going to go :-D.

One last thing because I'm trying to at least make it possible for y'all to step into my shoes and feel what this is like.

The last several days have been difficult as far as having energy. My guess is that when I get back to the hospital on Monday my red blood cell counts are going to be up significantly. The tiredness, I think, is because my body's building things. I have enough experience at a 32% hematocrit (about 2/3 of normal red blood cell level) to know that I can feel more energetic even at these blood levels.

So in response, I didn't "exercise" yesterday, in hope of letting my body recuperate or build up. I did walk down the hill to get some coffee. I walked back at a more leisurely pace, though. Judging by reactions from the hospital staff, I think even that would have been serious exercise by leukemia standards. I've worked at staying a little ahead of the game, though.

If I've learned anything going this route, I've learned that work pays off.

I ran throughout my 40's, and I wasn't very good at it. Even with carefully researched training that produced significant improvements, I was pretty slow even compared to runners older than me. I also tend to eat so much that I can gain weight even when I'm running 30 miles a week. I've had to work at controlling my eating for the last 20 years even when I've been exercising a lot.

I seem genetically constructed to respond poorly to exercise.

Nonetheless, all that exercise has paid off dramatically during the leukemia treatments.

It's the same with walking with God. I was "born again" at age 21, and I think I expected to wind up a saint, remembered by all for my godliness. I read a book for new Christians that suggested reading 10 chapters out of the Bible every day. I read 20.

Well, most days I read 20. It really only averaged about 10. I read through the Bible twice the first year I was a Christian and the New Testament two additional times. The second year I read even more. It didn't take much time before I knew the Bible better than anyone I met. Disagreeing with me was a terrible thing to do.

Knowing the Bible doesn't turn you into a saint, though. I had a terrible temper and a lot of struggles being pure of mind. I learned over the years that I'm more the kind of person that needs a lot of help than gives a lot of help.

But the effort has paid off. We don't know, of course, how I'll do through the rest of this leukemia treatment, but I've cruised through the first part filled with the grace of God and joy, both learning from others and giving joy to others.

I didn't have to be good at exercise, whether physically or spiritually, to benefit. I just had to exercise.

There's a lot of distractions in this house at the moment. I just opened a vinegar bottle for my wife, and I had to use pliers to do it. My kids are watching Monk. Janelle's making food for the Ingathering while she's doing so, and Hannah's cooking dinner.

So I don't really remember the point of all that I just wrote. Hopefully it will be a complete thought by itself, and it's more than just me rambling :-p.

I do remember that the point of this blog is that I'm excited about what's coming up and ready to experience the next half of my life however God gives it to me.

Who wants life to be normal?

Monday, September 26, 2011

Passed the Blood Test and Tennis

I passed the blood test today. I'm officially moved to priority status, which means the transplant team gets to start scheduling me. They're supposed to call me some time this week. Meg, the informative nurse practitioner, tells me they probably won't schedule anything until next week.

That's nice. I'll get to go to the Ingathering, which is the primary yearly festival at Rose Creek Village, where I live when I'm not being treated for acute leukemia.

My white blood cell count is 6.8, and my neutrophil count is at 5250, which is smack dab in the middle of normal range. My platelets are up to 178, which means I have a normal level of blood clotting ability, too.

And that means I can run and play tennis!

Unfortunately, my red blood cell counts are not up much. I'm running at about 2/3 full on those, which means I can only process oxygen at 2/3 normal level. That means my running and tennis endurance is pretty pitiful. Sad ...

That's not to say I'm not trying!

This morning I got up at 6 a.m. It was a struggle to feel energetic, which I suspect has a lot to do with the fact that I went to bed at 4 a.m. I got started on a web page about the problems with "Drive By Posting" in evolution vs. creation discussions, and I wrote on the subject for about 5 hours. We had driven home from Rose Creek Village yesterday, so I didn't get started on the page until about 10 pm.

I had company, too. My wife was up until at least 3 am working on her computer to set it up for composing songs. We did all this at the table, while Caleb snoozed on the couch less than 10 feet away, the only bed he gets in this 2-bedroom apartment provided by the kindness of "Open Arms,"

After my doctor's appointment this morning, I took a nap for about three hours, but I still felt terribly lacking in energy.

So I did the only thing I could think of to do in such a situation.

I took the kids to the weight room, and I did a full workout for about half an hour, followed by 5 minutes on the elliptical machine, which is as hard as jogging.

I was pumped. I felt great, but I still feel like a guy with 2/3 of the blood he's supposed to have.

So, next step. Take the kids to play tennis. It's a beautiful day, and I'm sitting outside, typing on the computer in a lawn chair, under a tree ...

Well, not anymore. My turn to play tennis came, and now we're back, and I'm sitting in the living room. I beat Caleb 6-2. In a sense, that's a great accomplishment because he can run significantly faster than me. In fact, if I remember correctly, he could outrun me when he was 11, which is very sad. On the other hand, it's not much of an accomplishment because it's the third time he's ever played.

The World of Fellow Leukemia/Lymphoma Patients

A few days ago I realized I hadn't called Don in quite a while. He got an autologous (from himself) stem cell transplant while I was in the hospital. He was released the day after his transplant, but he got a bad stomach infection and wound up back in the hospital for a week or so.

Then we had lunch with him a couple weeks later, and he was chipper, but he didn't look real healthy. He was still neutropenic (at risk of infection), and he had to wear a hospital mask into the restaurant, though he took it off to eat.

So I called him ... and he didn't answer.

I went in and told my wife, "I hope he's not dead!"

Fortunately, he called me back an hour or so later, and he's not only not dead, but he's healthy. I should have known because a lot of y'all prayed for him. In fact, I thought of that, and your prayers were the most comforting thing I could think of while I was worrying about him.

So today the shoe was on the other foot.

Nice shot that either Leilani or Manuha took.
Jerry sent me a text yesterday while we were driving back to Nashville. He said that he had spots all over his body, and he thinks he was bleeding because his platelets were low.

He's one week behind me on chemo, and on Thursday his platelet count was 18. Just to remind you, the low end of normal is 150. Eighteen is terrible, but the hospital doesn't give platelets to leukemia patients until they get down to 10.

The problem is, Jerry wasn't going to get his blood counts checked again until Monday. That's 4 days, and he was already at 18, which was down from around 90 three days earlier.

So as it turned out, his platelet count got down to 4, and basically he was leaking all over his body. That's frightening.

Anyway, he's okay. They gave him platelets today.

But he didn't know I was okay because I forgot to answer his text. I was driving back from Rose Creek Village when I got it. Then I got home, and we got settled in, and I spent most of the night typing up a web page. I went to the hospital, and we were in and out in not much over half an hour. When I got home, I'd only had 2 hours of sleep, so I took a nap from 8:30 to 11:30, and I missed another one of Jerry's text.

So at 11:30 I got a call from Jerry making sure I was okay.

When your friends have deadly diseases and a hospital is regularly administering powerfully toxic chemicals to them on a regular basis, you worry when they don't answer the phone.

I feel like I hit that 70-year-old, compare-your-aches-and-pains state about 20 years too early!

So tomorrow I pass my final test, the dental exam, and then wait around for calls from the transplant team. Meg tells me my blood counts are good enough that she canceled my Thursday blood counts.

Remember finals in high school and college? I never pictured having finals that included a blood test and a dental exam!

Good day to all of you.

Thursday, September 22, 2011

Moving On!

Blood counts were up today!

  • White Blood Cells: 5200
  • Neutrophils: 2830
  • Platelets: 56 (still very low, but going up, not down)

Those WBC and Neutrophil counts are low, but they're in black on the lab report. In other words, they're in the normal range. Besides that, both the WBC and neutrophil jumps are pretty big for 3 days. Recovery from round 2 has commenced.

And that means we're moving towards the transplant team.

Meg told me there's three things that have to happen:

  1. Insurance has to approve "priority status," which allows me to go see the transplant team.
  2. I have to have a dental cleaning and x-ray.
  3. Verify that blood counts are normalizing with a blood test Monday.

How quick? Well, I talked to her about 8:30. It's 9:48, and I looked at my appointment schedule, and I have a dental appointment at Vanderbilt on Tuesday, October 4 (a week and a half). The insurance called me yesterday and told me to call them when I'm moved to transplant, so they already know that's next.

The 12 days until the dental appointment gives plenty of time for my platelets to come up. You do do not want your platelets, which stop bleeding, to be low for a dental appointment; not even for a cleaning. I usually don't bleed at all at cleanings and check-ups (regular flossing prevents such bleeding for most people), but a lot of people do, and you don't want to be bleeding from the gums around most of your teeth when your blood isn't clotting properly.

So my tentative schedule of seeing the transplant team on Oct. 3 is off, but only by one week.

Got To Have a Humorous Note

The dental hygienist's name? Lori Engels.

Okay, I know it's not quite Laura Ingalls (Little House on the Prairie author), but it's awful close. I've had Dr. Watson (NOT from "Dr. Watson, I presume" fame) and Doc Halliday as interns, and I visited with Mr. Darcy when I was hospitalized.

I wonder how many other famous names I'm going to run across.

One more ...

Caleb and I leave about 6:45 for my appointments in order to avoid traffic. Since my lab appointment isn't until 8:00, we go to the cafeteria before the appointment. There I saw one of the nurses from 11 North, where I was hospitalized for 5 weeks, and I gave her a very cheery, "Hi Amanda!"

She recognized me and gave me a really big smile and hello.

The only problem is that I remembered afterward her name is Claire.

Sigh ...


Wednesday, September 21, 2011

Sept. 21: My Schedule

I thought today was going to be the first day of fall, but apparently it's September 23 this year. Oh, well, the picture's great anyway, so I'm still going to use it:

I've been asked several times over the last three days what's happening with me. Here's the plan and schedule as simply as I can put it.

The schedule can't be certain, but the nurse practitioner said this is a possibility. It's pretty likely that the transplant could be a week later, and possible that it could be two weeks later.

Tentative Schedule

Rest of September – Recover from the "consolidation" round of chemo.

Oct. 3-7 – Be tested by the transplant team so they can make a plan. They have to make sure I'm healthy enough to endure the intense chemo preparation. This will be done on an outpatient basis, but will take a lot of time.

Oct. 10-14 (in hospital) – I'm guessing this is the week they'll give me the chemo. They give a lot of chemo in a short time for transplants. Very potent. It's possible the chemo could last just 3 days, yet still wipe out my bone marrow, before they give me the stem cells.

Oct. 14-31 (in hospital) – If things go really well, this will be the time that the stem cells engraft. My immune system will be nil during this time, and I'll probably be having transfusions every day. This is a very dangerous time, so they hope for it to be as short as possible. It can take as little as 14 days and as many as 30.

Or Oct. 14-Nov. 14 (in hospital) – If things don't go so well, this is how long it could take a grow a new immune system.

Nov. 1 (or 15) - Jan. 31 (outpatient) – The approximate time frame I have to stay near the hospital and have daily or every other day checkups. The risk at this time is that the new immune system will reject my body (the opposite of organ transplants). This is called Graft-vs-Host Disease, and it can be fatal, but usually isn't. They use drugs to suppress the immune system to get the GVH to back off.

The doctor's very difficult job is to suppress the immune system enough to prevent GVH, but allow it to work well enough to kill any leukemia cells that might have hidden out and to heal the patient (me) from the ravages of chemotherapy and two to four weeks of inability to heal or fight infection.

Feb. 1 - end of 2012 – Apparently, the new marrow and immune system get used to my body over time. How much time varies. Six months to a year is the typical time. If GVH arises during this time, it's usually in the form of rashes. It gets controlled with drugs so it doesn't progress and attack organs.

The other problem over 2012 is going to be fatigue and lack of energy. Some transplant patients say it takes years to be able to do a full day's work. Others seem to have regained good energy quickly.


My goal's to run a 5K with my wife by summer, and a half marathon with someone next fall.

Of course, that reminds me of a comment by a 67-year-old man who was running the Badwater Ultramarathon, which is a 135-mile run from the lowest spot in the U.S. to the highest. The lowest spot is Badwater, California in Death Valley. The highest is Mt. McKinley, also in California. The race is run every year in July, often on my birthday, and the temperatures vary between 100 and 135 on race days, though it's a little hotter on the highways they run on.

This 67-year-old man commented as he was walking down the road. I'm quoting from memory:

You always start with these really high goals, like finishing in a really fast time. As the race progresses, you refine those goals down until you reach the point, which is where I'm at now, that your goal is simply not to throw up on your shoes.

So, with that in mind, I'm okay with setting high goals right now.

Monday, September 19, 2011

The Differentiation in Undifferentiated Leukemia

Ooh, ooh, ooh! Very excited to find this chart! Boy, does that explain some things!

The caption on the chart at Todar's Online Textbook of Bacteriology, where I got this, reads, "Origin and differentiation of cells of the immune system."

And please note that it was Hannah, home schooling with the kids, not me, who happened to be leisurely browsing an article entitled "Immune Defense Against Bacterial Pathogens: Adaptive or Acquired Immunity."

Anyway, so this is what the "undifferentiated" in my "Undifferentiated Acute Leukemia" stands for.

Let me explain.

This chart shows how immune system cells "differentiate." They start as stem cells—hematopoietic, or blood stem cells, rather than infant stem cells, which can become any cell in the body—then split into either lymphoid or myeloid cells. These lymphoid cells become lymphocytes, the killers of the blood stream, and the myeloid cells become all those other cells listed in the chart.

The two major types of acute leukemia are Acute Lymphoid Leukemia (ALL) and Acute Myeloid Leukemia (AML).

The reason that my leukemia is "undifferentiated" is because my blood stem cells were stopping before they ever "diffentiated" into lymphoid or myeloid cells. Thus, my leukemia was neither ALL nor AML.

Final picture: What happens is that a blood cell stops developing, but then divides and forgets how to die when it's supposed to. This mutated cell, called a blast because it is not a fully grown cell (thus the word "Blastic" in Blastic Plasmacytoid Dendritic Cell Neoplasm), then proliferates through the bone marrow and blood stream, preventing normal development of other cells and normal operation of the blood and lymph system. Mine stop before they split into lymphoid or myeloid cells, while most leukemias run into the problem somewhere after that split.

I don't know how many of you are interested in that kind of thing, but it was a neat picture for me.

Good day to you!

September 19: Just On Hold

Well, I was stunned to find my blood counts down again. Yesterday, I trotted up the hill to the mailboxes. That's not very far, only about 30 or 40 yards, but there's been days during this chemo when such a jog was very difficult or even impossible without a walking warmup. Yesterday it barely affected me breathing.

That was pretty exciting, so later in the day I took a risk that I was violating Dr. Strickland's orders and went jogging.

Now, keep in mind, I didn't know that I was violating his orders. In fact, I was pretty sure I wasn't. Dr. Strickland told me not to jog if my platelets were below 75. They were 91 on Thursday, and I had significantly more energy yesterday than I had on Thursday.

So I ran. I was thrilled enough already that I could just leave the house running. Since that first round of chemo, I've normally needed a significant walk to make my legs work right for jogging, but yesterday they felt great right out the door.

My hope was to make straight through for a mile, but the last quarter mile was uphill and I didn't want to overdo it. I quit at 3/4 of a mile, which wasn't even all that hard. I was excited. I swung by the fitness center, did just a few exercises, then walked enough to hit 2 miles for the day.

I felt great, even after, so I was excited about seeing good blood counts this morning.

The very first count on the list is my white blood cells. They were 1.7 (or 1700; they get expressed both ways). That was the same as last Thursday. My heart sunk a little, and I immediately went looking for the neutrophil count: 600.

Watching a play in Centennial Park with a mask
That's not quite low enough to be officially neutropenic, at least not here in the U.S. A Blastic Plasmacytoid Dendritic Cell Neoplasm patient in Ireland who's been emailing me tells me that under 1000 is officially neutropenic there.

Neutropenic means that your immune system is so depleted of bacteria-fighting cells (the neutrophils) that you're at extreme risk of infections. A lot of safety measures kick in when you're neutropenic.

I was at 850 last Thursday, but we began practicing those safety measures anyway, especially because we knew my blood wouldn't be checked again until today (Monday).

So, 600. We'll be continuing those safety measures till Thursday at least.

What was most surprising, I think, was my red blood cell counts. I'm at 30% hematocrit, down from 35%. Normal is about 45%, so I've only got about 2/3 of the oxygen carrying cells that I should. Hemoglobin, the actual oxygen-carrying molecule in the red blood cells, are equally down, at 10.2.

So why was running yesterday so easy? Weird.

The one that was really off, however, was the platelets. Those stop you from bleeding. My platelets are down to 15. Normal is at least 135, and people's platelet counts are commonly over 300. So 15 is real, real low.

So I'm sitting here in a room waiting for platelets as I type this.

They actually have me a choice. They don't automatically give platelets to hematology patients unless they're down to 11 or actually have a bleeding problem. But I won't be back for blood counts until Thursday, so it's not wise to wait 3 days without checking.

Apparently, though, Meg is willing to wait 2. She's the nurse practitioner for my case, and she told me I could get platelets and come back Thursday or turn them down and come back Wednesday.

I chose the platelets.

However, it's now 10:50 and the platelets are arriving as I type this. The nurse just checked my armband in the middle of the last sentence. I gave them blood at 8 a.m. This seems unusually slow for them.

Not that there's a problem. This is probably what I'd be doing at home, anyway.

Rats. IV is acting up. I have to type one-handed now until it's done. Few more minutes, then I go home. So ... till later!

Friday, September 16, 2011

The Neutropenic Life ... And Reliable Research

Vanderbilt is checking my blood counts every Monday and Thursday. Yesterday was Thursday, so we were up bright and early beating the traffic into Nashville.

A plug for Nashville drivers: Monday we drove in at 7:15, and the freeway was busy. There was already a slowdown at our exit some 7 miles outside the I-440 loop. Nonetheless, I don't think I've ever seen a freeway that full move that fast. I complain about drivers who don't know what they're doing all the time—I'm certain that will haunt me at the judgment—so I thought I'd say something good finally.

Anyway, I was surprised to find my white blood cell count at 1700 and my neutrophils at 850. They were at 25,400 and 24,000 on Monday because of a Neulasta shot. Under 1,000 is a seriously compromised immune system, and under 500 is called neutropenic and requires extreme measures to prevent infection.

I don't know whether to expect those numbers to go up or down, and they won't be checked again until Monday, so we went back to following all the neutropenic precautions.

Some of them are not what you'd expect:

  • No living plants in the house and no fresh flowers!
  • No raw fruits or vegetables unless they have to be peeled to be eaten.
  • All food boiled, thoroughly-cooked, pasteurized, or processed and packaged.
  • Washing hands and cleaning counters as though we all have an Art Monk version of Obsessive Compulsive disorder.
  • I get my own bathroom for just me to use.
  • Mandatory daily showers.
  • Wear a mask in public over my mouth and nose.

Platelets, which are the cells that form blood clots and stop bleeding when it occurs, drop with chemotherapy as well. So, no shaving with a razor, no jogging (to prevent bleeding in the joints), and they don't want me to clip my nails, either!


I canceled my trip back to the village this weekend as well. Handshaking and hugs and hanging around people are really not a good idea when your body can't kill bacteria.

I realized last weekend that I haven't been to a gathering (a "church service") in weeks ... probably since early July.

I'm convinced modern Christians overemphasize the "church service" to a pathological degree, but even when the gathering of the saints is in it's proper place—as one small but important part of daily life as God's family—it's very nice to be part of one.

Last weekend I sat with Jim, a friend from Rose Creek Village, and talked about the Gospel and the relative emphasis that should be put on God's lovingkindness towards us and our responsibility towards him. It was great, and that sort of thing happens so often that it's possible for me not to notice that I haven't "been to church" in weeks. (Are you noticing that I don't like the use of "church," when it primarily means a meeting?)

Anyway, that won't happen this weekend, either.

Taking Pills ... And Paying for Them

Because my neutrophil count dropped under 1,000, the nurse practitioner assigned to my case prescribed me three medications: an antibiotic, an antiviral, and an antifungal. When I got to the pharmacy to get them, though, I was only able to pick up two. The insurance refused to pay for the antibiotic.

"That's odd," I thought.

I've been without health insurance most of my adult life. I have bought antibiotics several times, usually for dental issues. They're usually about $25 for a 10-day course.

"How much do they cost?" I asked the clerk. "I'd hate to skip antibiotics while I'm neutropenic over twenty or thirty bucks!"

She went off to check.

$337 for 28 pills.


Good for the insurance. I wouldn't have paid for that, either.

Drug Costs and the Pharmaceutical Industry

I waited, and the NP prescribed me a different antibiotic that the insurance did pay for.

In my mind, the problem with drug costs is the incredible, unwieldy American system for testing and approving drugs. Because so many of the companies, people, and government agencies are corrupt, the whole system has to be regulated to a ridiculous degree, driving research and development costs through the roof.

I wrote a note to that effect on Facebook, and my cousin Janelle in Indian informed me that I was mistaken. Advertising, she told me, is the real culprit

The numbers she cited me don't appear to be accurate, but her point was.

From Science Daily:

The researchers’ estimate is based on the systematic collection of data directly from the industry and doctors during 2004, which shows the U.S. pharmaceutical industry spent 24.4% of the sales dollar on promotion, versus 13.4% for research and development.

So $45 of those $337 can be blamed on R&D. $82 was support their advertising.

And to whom are they advertising?

The industry spent approximately US$61,000 in promotion per physician during 2004.



So what does that tell us? Doctors and pharmacists just don't care about what works best, so the pharmaceutical industry has to market their really good, life-saving products because physicians won't bother checking to see what works?

I don't think that's true.

I think major pharmaceuticals are blowing 25% of our prescription dollars on getting their pill to sell better than the next company's pill, and how well it works only matters if it affects the bottom line.

We can do better than that.

From Brad Weeks, MD, citing the same study:

As well, note the authors, the number of meetings for promotional purposes has dramatically increased in the U.S. pharmaceutical industry, jumping from 120,000 in 1998 to 371,000 in 2004, further supporting their findings that the U.S. pharmaceutical industry is marketing-driven.

Thus, he concludes:

Thus, the study’s findings supports the position that the U.S. pharmaceutical industry is marketing-driven and challenges the perception of a research-driven, life-saving, pharmaceutical industry.

Yeah, that was my conclusion, too.

How to Find Reliable Research

So who did this study? Is the study accurate?

The gold standard for research in the scientific community is peer review. Every field of science has a journal or journals that are highly selective and that are read and reviewed by scientists in that field. These journals make sure that junk science and dishonesty do not slip by. If you want to be heard, you have to publish in those journals, and when you do, all the scientists trained in your field will decide whether you have a leg to stand on.

The process is not perfect, indeed no such process could be, but men walking on the moon and that fact that I'm alive today prove that it is effective.

I emphasized effective because I think that word represents the best way to judge most intellectual pursuits. Jesus advocated it, too, in order to protect the average person from the trained and often dangerous religious clergy: "Beware of false prophets. ... You shall know them by their fruits" (Matt. 7:15-16).

Dr. Weeks points out that the study on pharmaceutical companies' spending was peer-reviewed:

Their study, The Cost of Pushing Pills: A New Estimate of Pharmaceutical Promotion Expenditures in the United States, appears in the January 3, 2008 issue of PLoS Medicine, an online journal published by the Public Library of Science.

I like to make sure I'm quoting good information when I cite internet sources. You can read about PLoS Medicine , their board, the PLoS standard for their journals, what scientific societies they belong to, and even browse their articles at

Shameless Plug for My Research

Having said that, I have two web sites (free, like most web sites) that are research based, one on church history and one on the evidence for evolution. (Yeah, I know. Those seem to contradict.) On those sites, I've devoted a lot of effort to being honest and to verifying my sources just as I did above. I don't just throw my opinion around lightly.

Oh, and if I've not talked you into buying my book on the Council of Nicea, maybe this is my chance to do so, especially if you've read the nonsense Dan Brown tried to pawn off on the public in The Da Vinci Code. He made it look like the Council of Nicea created Christianity as we know it, and he was so effective that Glenn Beck actually repeated the junk history on his show.

All of this history is wrong, but worse, it's the Nag Hammadi Scrolls he's describing, not the Dead Sea Scrolls

Dan Brown got off easier than Glenn Beck. Dan Brown is an entertainer and few people hate him. Glenn Beck, on the other hand, was roasted as an idiot for repeating the same claims made in The Da Vinci Code.

I know that all Dan Brown had to do was read a couple books from the 60's and 70's, Holy Blood, Holy Grail and The Passover Plot, both long since rejected by historians, to come up with the "research" for his story. I read both books as a young Christian in the 80's, so I immediately recognized the theories.

In Dan Brown's defense, he didn't try to hide his source. The "expert" in the book is named Leigh Teabing, who is named after two of the authors of Holy Blood, Holy Grail, Richard Leigh and Michael Baigent. (Teabing is an anagram of Baigent)

There are real sources from which to do history. There are a couple eyewitness accounts of the Council of Nicea, and dozens of letters passed between bishops before and after the council. We know what it was about.

My book tells the story, explains the issues, and not only cites the right sources, but puts them in your hand. There's something like 60 pages of appendices at the end which include things like the emperor Constantine's opening speech at the council, his letter explaining to the churches why he called the council, and a letter from the bishop Eusebius of Caesarea explaining to the church of Caesarea why the council made the decision it did and what the Nicene Creed really expresses.

If that's not interesting for a Christian, then he's not much interested in the faith he's a part of. The Nicene Creed, or a version of it called the Apostles' Creed, is recited in millions of churches every week, and it is still the official creed of both the Roman Catholic and Eastern Orthodox Churches.

Teaser: Worse, almost no one but the Eastern Orthodox churches even know the main point of the Nicene Creed and agree with what it says! Most western Christians recite it every week while confidently disagreeing with the main issue about which it was written!!!

Weird, huh?

It's all in the book; it's all written so anyone can understand it; and yet the book both thoroughly cites the proper historical sources and puts them in your hand so you can verify them. What ancient writings that I don't add to the book are available on the internet for free. Christians already collect these writings, disguising them under the large generic term of "early church fathers."

How boring. My book sorts though the large, boring stuff to give you the distilled, pertinent, interesting stuff.

But I like the scientific method. You know, the one that Jesus advocated when he said "you'll know them by their fruits." I tell you about what was working for the Christians, how the Council of Nicea affected that, and then how their new practices worked.

The story's awesome.

Okay, that's the best shameless sales pitch I could make for my own book.

I got it reviewed by some people who have some history experience. Here's a couple of my favorite responses:

You did it! This is one of the best Early Church History books I have read. I could not stop reading. I have read many books on the subject, and none are better or clearer to read. (Rev. Steven R. Eubanks)

I am so loving this book! Where on earth did you find all this information! I'm so hooked. This book is good!!! (Audrey Griffith, B.A. in Theology)

You can get it at, where I self-published it. Don't think, however, that I skipped important publishing steps to do so. It is thoroughly researched (the research was both exhausting and exhaustive) and reviewed by every knowledgeable person I could reach, which was several. I've compared it with what other historians have written, and there is nothing fanciful or with the feel of a "conspiracy theory" about it.

Finally, I wrote the whole first half in story form so you could enjoy and understand the story before wrestling with its issue. A lot of that story is in the words of the early Christians themselves and the fifth-century historians who wrote about the council and its decades-long controversy.

Oh, and it will be avaliable on Amazon in about 6 weeks, though it will always be cheaper at Lulu, where you can also get it as an ebook.

Wednesday, September 14, 2011

Still Thrilled

Y'all are so patient. Overall my story is great and interesting. Leukemia's awesome like that. But on an ongoing, every day basis, even I get tired of the story. There's more to life than blood counts, hemorrhoids, and trying to jog.

Yosemite, kind of a perfect picture for this post. You may be able to see two of my sons in the lower center.
But that gives me a boatload to talk about!

We all have to get up and do the mundane every day. Now as for me, my days aren't all the same because I at least have the surprise of how I'm going to feel each morning, which is always different. Leukemia's awesome like that.

So when every day seems the same, and you wonder what you're supposed to be doing with your life, what keeps you going?

Here's the things I think make life worth living even when every day seems the same:

  • My wife and kids
  • Friends and neighbors
  • The young people I work with
  • The not-so-young people I work with
  • Memories and good times with all the above
  • Walking in nature - it somehow always makes me remember life isn't really about getting things done.

I'll save the "Leukemia's Awesome Like That" post for tomorrow. Y'all have to help me with today's post. When everything seems the same every day, what would you list as making life worth living?

Don't Be Still, My Beating Heart

Just had to share this video, which a friend of mine—a fellow cancer patient, feel free to pray for Ashimah, too, please—posted on Facebook.

I've never seen a news crew just stare speechless at a camera before.

The story's merely very good until the stethoscope enters the video. Then it's breathtaking. I made the mistake of watching it after midnight and very tired. It makes it very hard to maintain machismo.

Watch it here.

Tuesday, September 13, 2011

Great Article on a Potential Cancer Cure

Quite a number of people sent me links to various news stories on an amazing new treatment for cancer that was tested on three leukemia patients ... successfully!

The three patients were chronic leukemia patients, which is a significantly different disease than the acute leukemia I have, but the articles cover a therapy that is nonetheless extremely important for not only leukemias in general, but cancers in general.

Today another person sent me a link to an article about this treatment, which involves using the HIV virus (yes, the one that causes AIDS) to transport genes into T-cells, transforming those T-cells into cancer killers. This particular article is well-written and easy to read, very interesting, so I'm passing it on to you:


I'm feeling pretty energetic today. Yesterday was really rough.

Sometimes I analyze things so much I miss the obvious. I spent yesterday wondering why I was so fatigued. My red blood cell counts really weren't low enough to justify the exhaustion ... and even a little bit of confusion. I wondered if maybe the Neulasta shot from Saturday was making my body work so hard that I didn't have energy for other things.

It could have been a lot easier. I could have thought, "Wow. I'm really tired. I need a nap. People on chemo need more sleep than normal."

I got a long and good night's sleep last night. I feel way better.

Sometimes the obvious is hard to see.

Did you know Americans don't rest enough? We think that if we keep going, we'll get more done. Sometimes stopping is the best way to get things done. I have that American insanity—just keep going till you drop—as bad as anyone.

Get some rest.


A friend sent me a text about the use of the word "remission" in a Bible verse. Usually, it's understood to simply be a synonym for "forgiveness." My friend, however, was thinking about it in the context of my remission from leukemia, and he told me about it.

It really got me thinking.

I wrote a blog post on it, but since the post is focused on following Christ, not leukemia, I thought it fit better on my The Rest of the Old, Old Story blog than here. Since it was inspired by leukemia, I am linking it from here, though, for those of you that want to read it.

Monday, September 12, 2011

The Nature of Inspiration

Some days I write on the blog because it's wise to keep it going. Yesterday was one of those days where it was good to just get a blog post up.

Today I'm writing because of things I'm thinking about, both humorous and profound.

On the humorous side, I saw my blood counts this morning. Those blood-building shots work REALLY well on me.

The Neulasten shot I got Saturday was meant to prevent my white blood cell counts (WBC) from getting too low. Low would be if my WBC dropped below 4,000. Even 4,000 wouldn't be too bad. Keeping it above 1,000 or 2,000 so that my neutrophils wouldn't drop below 500 would be sufficient. (Neutrophils are one of the white blood cells, so the Absolute Neutrophil Count, or ANC, is a portion of the WBC.)

My white blood cell count is 25,300. My neutrophil count is 24,000.

I guess we're okay for now. smiley

Jerry's News

I just got a text from Rayetta, Jerry's wife, letting me know that he's in getting the first dose of his consolidation round of chemo. His meds are a little different than mine were, but the main one, Cytarabine or something close to that, is the same.

It shouldn't affect him for a couple days unless there's an initial reaction.

No news on Dump's heart problem yet. I suspect he's still researching it. On Wednesday, I think I'll visit the infusion center and see if they'll let Jerry have a visit from me.

My News

I was wrong yesterday. They're not trying to undo the effects of last week's chemo. They're really just trying to keep my counts up even while the chemo is working. So there's this battle going on right now between the Cytabarine and whatever else I got last week and the Neulasta shot I got on Saturday.

Since my neutrophil count is 24,000, we're actually waiting for it to go down, not up. Sometime in the next 2-3 weeks, my WBC should stabilize at a much lower number, then go up.

At that point I get switched to "priority" status, and I get a two-day evaluation from the transplant team.

The nurse told me this morning that it's possible to go from the two-day evaluation to the beginning of the transplant treatment in one week.

So I am on the fast track.

Hopefully Going Just a Little Deeper ...

Last night, my aunt put the following on Facebook:

Following my nephew's blog through my gmail has made it possible to keep up with his journey through Leukemia without coming to facebook on a daily basis ~ which was helpful during the last month while spending so much more time on caring for lil JJ and her 'bad bug'. Paul Pavao keeps me inspired, especially when I get to feeling that this 'is all too much for me'

I had a cousin in a dangerous motorcycle wreck recently. My grandmother, age 88, is in ICU right now with pneumonia. My aunt, who's caring for a small child with a "bad bug," is over 70. I wrote recently about a teenage girl with a virus that has paralyzed her from the neck down.

In the meantime, I'm typing blogs, exercising, helping home school my children, meeting new people, and praying about my best role in building the body of Christ in a new city.

Not exactly deep suffering.

Yes, I might have a time bomb inside me waiting to go off and send me to unhindered fellowship with the Spirit of God, but since the grace of God has ensured that we've spent no time worrying about such blessings, there's just not a lot of suffering going on.

But, if my story is going to inspire people doing worthwhile work, like my aunt with her great granddaughter, then I intend to keep writing. This isn't about me overcoming. This is about us overcoming.

A friend visited yesterday and spent some time talking about the care that God has for people. If Jesus Christ was willing to die and suffer for us, then he attached some great importance to us. (I know there's plenty of Americans who don't believe Jesus was God's Son nor that he died for us, but this is addressed to those who do.)

Personally, I believe our potential is very close to unlimited. Most of us just need to know that our efforts have a decent chance of producing results.

They do.

To me, Jesus didn't die because we're so wicked that God's anger had to be appeased by his death. To me, Jesus died because we were hopeless, helpless, and powerless on our own. How many of us don't know how to break our addictions, our laziness, our daily habits, and the feeling that we're just not that important in the great scheme of things?

So we go on and on, not knowing how to change.

Jesus died to turn the sons and daughters of men into the sons and daughters of God.

Jesus died to enable us to do what we thought we couldn't do. He died to make our dreams, wishes, and hopes of being a positive, powerful, life-transforming influence on those who meet us a reality.

So if I can inspire just a few other people to be hopeful, empowered, and influential, then I want to do that. This isn't about me going through some great endeavor and succeeding. This is about us going through whatever the Lord God Almighty has put in front of us, never giving up, and coming out on the other side with the rewards we never dared believe we could get.

We always thought those were for other people.

But they're for us.

Sunday, September 11, 2011

September 11: The Odd Nature of Being Low on Blood

It's September 11, 2011. It's the 10-year anniversary of the 9/11 terrorist attacks. I'm not sure what to say about that except that I hope the good things that came from 9/11 won't go away. Those good things are what we have to mitigate the bad.

View over the apartment complex this morning
I saw an email from the founder of, an online service that helps people spend time together offline, saying that was a product of 9/11. It was used to help people get together in the real world after the traumatic events and to continue to meet and provide activity and strength for one another.

Did you get a little close to someone because of 9/11? Did you think a little differently about the world?

It's not just churches that need revivals. We all need them. Precious and important moments in our lives just slip into oblivion, becoming nothing but nostalgia with no current impact on our behavior.

I like to schedule the occasional pep rally, with just me attending, so I don't forget every good lesson I've ever learned. Holding on to a few of them helps me live my life better today.

Well, that's sufficient for a blog, but I don't think I'll be able to write about this morning's "run" as well tomorrow as I hope to be able to this morning.

Just another picture at the apartment complex

The Odd Nature of Being Low on Blood

"Jogging" this morning was very rough. (For those of you who think jogging's impossible for you, let me recommend my web page on how to start jogging, on a web site I hardly every maintain.)

I felt really energetic when I woke up. I felt light, my head was clear, and I could picture my arms and legs pumping as I ran down the street.

Then I got out of bed.

I still felt clear and light, but now my body felt clear and my head felt light. It was a very pleasant feeling, really, surely aroused by a slight shortage of oxygen to the brain.

I went walking anyway. I canceled all ideas of running.

Not a bad walking spot, huh?
The weird part was how good I felt. I just didn't feel like putting any energy into my walk. I forced myself to anyway, doing a low-effort version of power walking for a half mile down to one end of the apartment complex.

At that point, I turned around and ran a little over halfway back, which would be about a quarter mile. It was very hard to get my legs going at first, but then I trotted comfortably, my breathing coming rapidly faster, and my legs feeling limper and limper with each step.

Finally, I couldn't keep going, and I slowed to a walk, still gasping for breath.

These cars sit at the end of the complex. Maybe the last apartment is for rich folks only.
What's funny about being low on blood, though, is that the problem is not your breath. Breathe all you want. It doesn't change anything because there's not enough blood to transport all the oxygen you're breathing in. So even though everything in me was saying, "Breathe hard, breathe hard," I could slow down to almost normal breathing and feel exactly the same.

On top of that, my legs, which were not sore or overwhelmed by a half-mile walk and a quarter-mile run, were nonetheless oxygen-starved. They weren't sore. They were slightly limp.

This may all sound scary, but you get used to this after just a few days. Simply slowing down to a slower walk let my blood catch up, while I breathed barely harder than normal. My legs went back to normal, and it was somewhat like I'd never exercised.

I walked to the other end of the apartment complex, which gave me a distance of about 1.5 miles at that point. I had walked more slowly, so I was feeling okay. It's the stress of the moment that's hard when you're low on blood. If you take it easy, you can keep going as if there's no problem.

As I came back from that end of the complex, I conducted a test. I power walked up a hill. It was very hard to make it to the top.

Now, keep in mind that 5 days ago, I ran all the way up a steep hill that is more than a half-mile long. Today, I'm struggling to walk fast up a hill that was about 100 yards long, or maybe just longer.

At the top, I slowed my breathing. Sure enough, it was no problem to stop breathing hard. Felt no different. Then I took my pulse.


The convertible Beamer from the end of the apartments, in case you like such machines.
My pulse was going too fast for me to count. Nurses at the hospital refer to "chemo-brain" when a patient isn't thinking too clearly. I was having a flash of chemo-brain. I couldn't count the beat of my heart and pay attention to the seconds passing on the stopwatch on my iPhone at the same time.

Finally I figured out to look away and just count my pulse. When I did that, I found my pulse to be somewhere around 150. I'd already been stopped for a few seconds. It had surely jumped to near maximum climbing that hill.

The reason I'm bothering with details is to to tell you that a minute or so later, my heart rate was still at 130, but I was comfortably breathing, not hard at all.

Very weird.

I'm back at home now, obviously, since I'm typing on the computer. I feel normal. You don't need much blood to sit at a table and type. It's possible that the weirdness won't go on too much longer, though. They gave me a shot called Neulasten yesterday to boost my blood counts.

Of course, that was weird, too.

This coming week is when the chemo from last week is really supposed to take effect. It's supposed to be killing blood cells. Why are we boosting them while they're still supposed to be going down?

I have a suspicion that the doctors didn't realize how quickly I'd be able to get a transplant due to the cord blood. Adult stem cell transplants from a baby's cord blood is a relatively new technology. I suspect if they had known how quickly the stem cells would become available that they would never have done this second round of chemo.

Thus, the Neulasten shot is a way to get me out of this second round as fast as possible.

I'm just guessing, of course. I do know that getting a leukemia patient to transplant while he's still in remission is really important and probably all the more so because of the relationship between my leukemia and Blastic Plasmacytoid Dendritic Cell Neoplasm, a form of leukemia in which relapse has always been fatal.

Friday, September 9, 2011

September 9: Sometimes This Seems Like a Game

It was funny lining up this morning behind two other bald guys. There were no men with hair in the waiting room this morning.

It must be harder to go through that as a lady. I saw a bald lady come in yesterday.

Don and I (I'm on the left): "The Toxic Twins."
Today's my last dose of "consolidation" chemo, the second round.

It's weird because I feel healthy. My red blood cell counts haven't dropped the last couple days, and I'm just over 80% of what would be normal to me. By now, that's a pretty good blood count, so I feel normal, like nothing's wrong.

And on the surface, nothing is wrong. Except for the fact that I'm receiving my fourth large dose of poison today, I am healthy.

Of course, it's extremely likely that there's a ticking bomb hiding out somewhere in my bone marrow or blood, so the poison's necessary.

Nonetheless, this all feels like a game. I come in, give them blood, fill out the questionnaire on how I'm feeling (great except for nausea that is controlled very well by medication they prescribed), and then I sit around and type on the computer for a few hours while they poison me--and hopefully kill any leftover leukemic cells by doing so.

Even more like a game is all the stuff I do at home. Since the chemo attacks all quickly reproducing cells, it stops saliva and mucous as well as destroying blood cells. So I rinse my mouth regularly with a salt and baking soda solution, and I take some extra careful measures to prevent hemorrhoids. (There I go having to talk about that again!).

Also, the Ara-C that I'm getting this time makes for very dry eyes, so four times a day I put drops in my eyes.

There's a lot of people who live like that. They take meds every morning, every night, and maybe at every meal. Insulin shots, checking their own blood ... all sorts of stuff. I think it's a lot of people who do that because the hospital is always surprised when I tell them that I don't take any meds on a regular basis.

So, a lot of people go through that, but not me. It would be different if I felt sick or weak. I don't, so it feels like I'm playing a game or acting.

It feels something like this. "Yes, yes, I'm very sick. I could die in less than a year. In fact, if we were leaning on odds, I have about a 60% chance of being buried within 2 years. Also, I'm in the middle of chemo, with all its side effects ... So, do you want to go to the gym? A good workout followed by a couple-mile run would be fun!"

It just doesn't seem very real.

For the record, though, my white blood cell counts dropped significantly today, including my neutrophils (the anti-bacterial ones). Tomorrow they're going to give a shot related to neupogen, called Neulasta, which will help raise my neutrophil levels. Apparently, they're going to try to prevent me from ever going neutropenic (under 500 on the Absolute Neutrophil Count) this time, which is part of what makes chemotherapy so dangerous.

The Ability to Heal Is Awesome

That will be really nice. What made the last chemo unpleasant was that for a week or so, every irritation was compounded. No matter if we treated a problem and stopped it from getting worse, it couldn't get better until my white blood cell counts came up. Even cuts wouldn't heal. They'd stop bleeding, but they'd just stay there. Athlete's foot, hemorrhoids, mouth sores ... they can be slowed or stopped, and maybe their symptoms improved with pain medication, but not healed.

Let me tell you, there is a huge difference between slowly accumulating injuries and irritations that don't go away and the ability to heal.

Healing is an awesome thing.

Another Brian Regan Excursus

That reminds me of the most recent Brian Regan audio I heard. It's not available on Amazon, but we downloaded it from iTunes. I don't remember how much it cost.

On it he talks about getting older and how things don't heal. He gets up one morning, feels some pain and says, "My hip hurts ... I guess forever."

I can't find that tape on YouTube, but ... Brian Regan has lots of funny stuff I love, so I'm going to give you a video of one anyway.

Have any of you noticed that it's right about 37 or 38 years old when the healing process slows down ... dramatically? A good bruise or very sore muscles from a sports event takes a month rather than 3 days to get better. A pulled muscle can hurt for 4 or 5 months rather than healing up in a week.

If you haven't, then when you do ... don't worry. It's normal.

Back to the Hip Pain Thing

I've got to get a good web page up some time on the massage therapy I use that helps with that. I've passed it on to a lot of people, and it's effective. It takes a tennis ball, although there's an over-priced tool called a "Backknobber" that helps, too.

For me, I mostly use it on my upper back (both the Backknobber and the tennis ball) and my hips (tennis ball only).

I'll make it a priority to get a page up on it soon, and I'll link it from here.

I have ongoing hip pain, but I almost never have to deal with it because I know how to keep it under control. What's neat is that the result has been that my occasional lower back problems have virtually gone away. I can't remember the last time I've struggled with lower back pain.

Same with the neck and upper back pain. There has been a lot of times that I'll find someone who can't even turn their head or can't pick anything up on one side because of upper back pain. I'll tell them they don't need to put up with that, find the spot on their back that's hurting, put pressure on it for a couple minutes, then watch their amazement at the relief. Then I hand them a tennis ball and tell them to lay on it as they need to.

They all describe it as miraculous.

There's a couple safety bits of advice that go with what I just described, but basically it's safe, and you could probably figure it out on your own.

If you want a real thorough explanation of how that works, or how it's used to treat other muscle pain, then you can get Julie Donnely's Pain-Free Living. (You have to scroll down to get to just the books.)

I emphasized the word muscles there because so much joint pain, and especially back pain and sciatica, is actually caused by tight muscles or muscles with spasms in them. Also, muscles are safe to treat with massage. It's not like a chiropractor popping joints. Do that wrong, and you can cause real problems. Sit or lay on a tennis ball in a controlled manner, though, and the worst you're going to do is make your muscle a little sore.

Again, I'll get a page up soon, but you can skip that with Julie Donnely's book. By the way, Pain-Free Living is more comprehensive, but her The Pain-Free Runner or Pain-Free Triathlete would probably give you enough information, too. They're a lot cheaper. Oh, and her Carpal Tunnel Syndrome is just $10, too, and if you've got the symptoms of CTS, you really need to read her book and possible avoid unnecessary and somewhat dangerous surgery. The treatment she suggests is free, often effective, and safe. You'll know in days whether it's going to work, so there's no reason not to try it.

My wife had the symptoms of Carpal Tunnel Syndrome for a while. We cured them with shoulder massage. No kidding. Many people, however, have to do more long-term massage of the forearms. It's not far out or anything. In a hospital setting, a physical therapist will often treat Carpal Tunnel Syndrome with massage, exercises, ice, and special gloves in order to prevent the need for surgery. The Carpal Tunnel Syndrome book is just far cheaper, somewhat easier and, in my opinion, more effective because you're not overdoing it.

Once again, I'm supposed to tell you that if you use my links to go to Julie Donnely's page, I'll get a commission. Same with the Amazon link above to the Backnobber. I make about $100 per year of such commissions, which isn't much. I didn't make those links to sell you something. Everything I wrote here is simply true and written to prevent pain for the many of us my age who have it.

Something Interesting?

It seems like I had more important—or maybe interesting—to talk about today, but I can't remember what those were. So, here's a video recommended by a friend and my wife that you may find funny. Personally, I think it's just good advice.

Thursday, September 8, 2011

I've Got a Donor! Leukemia and Unrelated Cord Blood Transplants

I guess I should report this as breaking news. From my doctor:

Noted -- I did speak with the transplant team [yesterday]. Cord blood stem cell units have been identified and reserved.

I was told by a nurse on Tuesday that cord blood transplants can be done, but it takes 3 umbilical cords to provide enough for an adult. A friend of mine, Becky Milam, told me she had donated an umbilical cord, in fact.

I read some articles about it today.

Apparently, you don't have to match cord blood as stringently because the immune cells in the cord blood are less mature. In fact, when you receive bone marrow from an unrelated donor, the doctors remove the T-cells to help reduce graft-versus-host disease. (That's when the new marrow or stem cells create an immune system that attacks the recipient's--that's me--body.) In cord cell blood, however, you can leave the T-cells in, which helps make sure that there's no relapse. The T-cells make the new immune system more likely to find and destroy any lurking leukemia cells.

In old articles I read—and I only read medical news reports and actual research papers, about 12 of them—there was increased graft-versus-host disease from unrelated cord blood transplants. That was around 2005. In 2010, the papers show a reduced incidence of graft-versus-host disease.

Survival rates for partial matches from cord blood are just as high as perfect matches from adults.

That's really good news, but you don't want to know what the survival rates are. They're not quite as good as I thought they were.

Of course, the higher risk just increases my excitement. At the end of this, it makes my claim that God is in control of all this that much more powerful.

So, okay, I'll tell you. I saw 38% chance of survival for 2 years. The vast majority who survived that long were leukemia-free. Keep in mind, though, that there's a lot involved in that number. Some people were not in remission when they got their transplant, and those people do terrible. Others didn't have quite as many stem cells as I'll probably get, so it took longer for their counts to recover. Some of those were basically without an immune system for over a month, and others for over two months. A lot of those died of infections and diseases incurred during that time.

Either way, I like the risk. It's exciting because we're trusting God.

Again, I always really loved the end of The Last Starfighter, a children's movie that's not clean enough to show to children. An alien lizard-like being is in a ship, the very last fighting starship of our galaxy, against an invading race with many warships. A human is with him who is gifted but inexperienced, and he is terrified and hopeless. Not the lizard, though. He is thrilled! "I've always wanted to fight a battle against incredible odds!" he cries.

The inexperienced starfighter at the helm mourns. "It's going to be a slaughter!"

"That's the spirit!!!" the zealous lizard exuberantly shouts!

"No, I mean they'll slaughter us!"

The lizard's shoulders slump in dejection. "Oh," he says.

Here's my battle against incredible odds, life or death, in the hands of God.

I am the Resurrection and the Life. He who believes in me will never die. ~Jesus Christ, from the Gospel of John, ch. 11

September 8 Update:

Last night when I had free time after a busy day, which I'll tell you about in a minute, I had some time to catch up on others' blogs that I haven't read yet. One of them was my daughter's. Our frequent trips have led her to entitle it Nel Around America.

Janelle's on the right; her friend Kay on the left
Last week's blog had this entry in it:

I was so angry at first when everything happened with my dad, but through it all he made new friends and he seems to be happier than he has ever been. For us, we are not lacking anything. While he is in the hospital, everyone goes completely out of their way to make sure that we have everything we need and want.

The cancer society provided a free apartment that is much nicer than anything I have ever lived in in my entire life. This has also provided a chance to get some very needed schooling done, that will be entirely uninterrupted. Ray has been putting together a box of vegetables every week for my parents. And so many other things. I just want to say thank you for everything everyone has done, and for all your help.

That was, needless to say, a very encouraging couple of paragraphs to read.

Yesterday: Chemo and Preparing for Half Marathons

I saw how much my blood counts went down yesterday, and I thought I'd better get in a long run (well, mostly walk) before they went down too much. I went a little over 5 miles in about 80 minutes. It made me feel like that 3-hour half marathon is not out of my reach!

Even better, despite having a full unit of blood destroyed by the chemo, I made it up the hill to our house for the first time. It was really slow, but we measured the hill in the car on the way home from the hospital yesterday, and it's about .6 miles, or about 1100 yards. There's a short downhill in the middle of about 150 yards, but the rest is all steep uphill.

It took me 7 and 1/2 minutes, which is slow, but I ran uphill for 7 and 1/2 minutes! I was excited. All the more so because that was at the 2.7 mile mark, and I'd surely run a mile of those 2.7 miles and power walked through the rest of it.

Yes, power walked ... like this:

I guess I'm "a disgrace to the man race"!

Quick final note on me: Oddly enough, my blood counts didn't drop today at all, really, except that my neutrophils are down to a more normal 60% of my white blood cells.

They did call the doctor this morning to check on my chemo because I was very slightly slow and shaky on the dexterity test. I don't have the steadiest hands, anyway, but they had another nurse check me, and then Dr. Strickland said to continue the chemo.

Yesterday and Surprise Visits from Friends Who Trust God

Towards the end of my run/walk, I got a call from an old friend. He'd been with us back in the early days at Rose Creek Village, but he left to go live a more organic and off the grid lifestyle.

As it turns out, his daughter has contracted a virus that has paralyzed her from the shoulders down. In fact, she can move her neck, but she can't hold up her head on her own. She's being treated at Vanderbilt at well, though she's home. Vanderbilt saw the care she's been receiving from her family and has allowed them to handle her physical therapy and care.

It's hard to predict recovery from the virus, but his daughter is young, about 15 years old, and it's likely she'll gain full recovery within a year.

What's funny is that when I told them I'd pray, her older sister told me that Naomi considers her illness the will of God that has created a great opportunity to minister to people. So she asked me to pray that God's will would be done rather than to pray that Naomi would be healed.

Now where have I heard that before?

Anyway, it was a great story. Naomi's sister told me about nurses coming to their room just to see Naomi smile. It appears that she never stops smiling, and she never admits to being in pain. They have to read her pain by subtle adjustments in her smile.

I'm telling you, there are a lot of inspiring, brave, and God-fearing people in these hospitals that make you feel like life's worth giving your best shot to.

Note to Dee Dee

Right at the center of the blessings of leukemia is all the people I get to enjoy.

I got a letter from my cousin Dee Dee, a first cousin I wasn't even aware I had, which was really inspiring. It came by snail mail, so I'm having to obtain the archaic tools needed to return mail by postal service. I suppose I'll find out at the same time whether I still know how to print by hand. I'm certain I can't write readable cursive! I can barely sign my name legibly even when I'm trying to!

Anyway, getting the ancient tools out has been a slow process. I should have written back already. I will soon, but I'm hoping, Dee Dee, that you and your children will see this blog post and know how encouraging your letter was to me. I was grateful for all the letters. They were amazing.

Made me cry.

Still a disgrace to the man race, I suppose.

Wednesday, September 7, 2011

September 7: Consolidation Round and Updates

Today is day 2 of the "consolidation round." That's like an immunization booster shot. The first chemotherapy round worked. I'm in remission, but this is to make sure I stay in remission.

Leukemia's pesky. Only one leukemic cell has to survive, hidden out somewhere in your body, in order to create a relapse. In my case, that one cell could even be hiding out in my skin somewhere!

I thought this time we'd be doing a lighter version of the same medications they used the first time around. Not so. I have one new medication and one repeat medication. The repeat medication is a larger dose, not smaller. I think the Ara-C (the repeat med) is usually used on ALL (Acute Lymphocytic Leukemia). My leukemia, though undifferentiated, is more related to AML (Acute Myeloid Lukemia) than ALL, but they're attacking it from both sides.

But I could be wrong. Maybe it's the other med that's for ALL.

The potential side effects aren't much different, though. They did add a new one: dry eyes. They told me to get some eye drops from a pharmacy and use them every day. Apparently, they can get so dry that it leads to irritation that won't go away until my blood counts get back up and my body can heal itself.

Speaking of ...

Blood Counts

Remember that I'm hoping to run (but mostly walk) a half marathon on November 12. It would be nice to train for that with as many red blood cells and as much hemoglobin as possible. Muscles like to be provided with oxygen while they work. In fact, every cell in the body needs oxygen to carry on the processes of life.

But ... Bang! On day one, hemoglobin, which was just under normal at 13.4, dropped to 12.1. That's 10% down. Red blood cells 4.16 to 3.84, and hematocrit (which measures very, very similar to the red blood cells) dropped from 39% to 36%.

I know from experience that I can't really run at 2.75 on the red blood cells, and by the time I get under that, my hematocrit will be at 25%, and they'll be giving me a transfusion.

They also got 10% of my white blood cells the first day, which is a lot because the chemo won't really kick in until next week. The funny thing, though, is that my neutrophils, which are part of the white blood cells, leaped up from 3000 to 5000. They now represent over 80% of my white blood cells.


But it doesn't bother the doctors and nurses. Weird is actually normal when they stick chemo in you. "Don't worry; it will all pan out."


I mentioned this on Facebook, but Jerry was in the waiting room when I went in to get briefed on my chemo. He was waiting for a biopsy. He was with Rayetta, his wife, and Dump, his brother, and I invited them out to dinner. They're going home today, so it was the only chance.

It turned out that my chemo lasted till around 6:30 pm, and I was very hungry by then, so Caleb and I ate in the hospital. (Caleb's my driver this week.)

So Jerry and I made arrangements for dessert.

I found a 24-hour cafe called Cafe Coco. It's a little pizzeria with a downtown coffee shop feel (which I like). I'm sure the building used to be a house, so there's winding halls inside; they have a lot of outside seating, too.

I had wings. They were hot. I'm sure they were probably good, too, but mostly they were hot.

We brought the kids, and Dump and I chatted about his upcoming heart surgery. It's called a "heart ablation." It's pretty strange. They're going to stop his heart, then burn a nerve (to kill it), and then restart his heart.

Dump, back when Jerry and I were hospitalized
Scary, huh?

He's got a flutter. I think it's called an Atrial Flutter. His heart will jump to over 100 beats per minute and stay there. Only it's not really beating 100 times per minute. Instead, just half his heart is fluttering, and the heart rate monitor picks up the flutter.

That Atrial Flutter comes and goes with him. He's had something like three spells, and there's some medication they can use to bring it down. It appears from the Wikipedia article I linked that it can get worse, though, so they want to do something about it.

That something is what I described, and Dump's having second thoughts about it.

He described a conversation with the doctor in which the doctor was assuring him he could restart Dump's heart, and Dump was saying, "There's only one person who can guarantee he can restart my heart, and you are not him!"

He finally forced the doctor to admit he could not give a 100% guarantee that he could restart the heart. Dump said okay, and the doctor added, "But I can restart your heart."

So Dump's doing research. He's going to go looking online for the most highly recommended cardiologist. He's also found several people who've had a heart ablation. While some had their flutter cured, one lady said she's had three nerves burned that way in three operations, and she still has the flutter.

I told Dump, "Well, at least they restarted her heart every time!"

He acknowledged that was a good thing.

Please feel free to pray for him. I prayed for him right there in the crowded coffee shop. There's two lives at stake here, his and Jerry's. He is Jerry's bone marrow donor.

Um, um, um ...

I think that's it. Wait, one more thing ...

My Book

Don't forget I have book.  It's 20% off at if you use SEPTEMBER305 as the check out code. That's only good until Friday (Sept. 9).

It's a history book, but it's an interesting one. Actually, if history's done right, all history books should be interesting. After all, what is history? Isn't it the stories and facts that we think are worth remembering? Thus, history is the stories and facts that we find most important, most relevant, or most fascinating.

With all of time to work with, the result should be that there is nothing more interesting to read than a history book!

Hopefully, I've accomplished that for Christians because a book about the Council of Nicea is all those things: relevant, important, and interesting. It's a story thatis often embarrassing because church leaders got sucked up into politics for the first time ever, and for the first time every had armies at their disposal.

They also had something to fight about, and they did. As the Roman historian Ammianus put it:

The highways were covered with troops of bishops galloping from every side to the assemblies, which they call synods; and while they labored to reduce the whole sect to their own particular opinions, the public establishment of the posts was almost ruined by their hasty and repeated journeys.

On top of the intrigue, the Council of Nicea is a hot potato today. Dan Brown's Da Vinci Code, claiming to be a scholarly book for sales purposes but really just borrowing the discredited scholarship of Holy Blood, Holy Grail and The Passover Plot, has "informed" much of the historically ignorant public that Christianity as we know it was basically invented at the Council of Nicea.

Catholics and Orthodox say the Council of Nicea and other "ecumenical councils" carry divine authority. Protestants repeat and venerate the creed that came from Nicea, but many blame the council for ruining the church and turning it into an institution rather than a participatory community. Others, as said, accuse the council of reinventing the Bible by throwing out dozens of books and persecuting their authors.

Perhaps—at least I hope it's true, and I've been told so before—the best benefit of anything I write is not my conclusions but the methods used to arrive at them. How do you know who's telling you the truth? That's what I've devoted a lot of my adult life to answering, and I like to think that I'm not only pretty good at it, but that I'm pretty good at helping you get a "feel" for what you can and can't trust ... not only from people addressing the subject of my book, but from the media in general.

Research is a skill. In this internet age, it's a simple enough skill to be worth mastering. Most people are very interested in a good BD, which is a, uh, bull feces detector.

In the Beginning Was the Logos is an excellent BD for the Council of Nicea, and it is training for other subjects, too.