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 ...

9SBTS4CWJ4VN

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.

Goals


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!

Fun.

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.

Wow.

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.

WHAAAT???

$61,000 IN ADVERTISING PER PHYSICIAN IN THE UNITED STATES???

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 http://www.plos.org/journals/journals.php.

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 Lulu.com, 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.