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.

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.

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.

Weird.

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."

Jerry

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 lulu.com 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.

September 2: Big Goals and Half Marathons

I got an official "you're in remission" email from Dr. Strickland yesterday.

For all we know, then, I'm cured. But "for all we know" is a big phrase. Leukemia, at least most acute leukemias, are propagated by one mutated cell. It's entirely possible, even likely, that if I have one loose leukemic cell hiding out in my body somewhere, the disease could come back.

So, on Tuesday I have one more round of chemotherapy. I go in every morning at 8:00 am for four days. Then there's a week letting the chemo work, then a couple weeks for my blood to build back up. That pretty much fills September.

Then we work on the marrow transplant.

Big Goals and Half Marathons

As I said in the last blog post, some friends of mine are running a half marathon in Nashville in November. That's 13.1 miles.

This morning I went out walking and running for 25 minutes, and I decided I'm going to give my best shot at doing it with them. A little math says that I can do a half marathon in under three hours even if I only jog about 4 of the 13 miles.

The question, as far as that being a realistic goal, is how much I'll be able to exercise during the second round of chemo. It's a lighter round, but according to the doctor it will knock my white blood cell count down really low. That means it will also knock my red blood cell count down pretty low, and that's my oxygen transport system. It doesn't matter how good your lungs and muscles are if you don't have blood to carry oxygen from one to the other!

I should be recovered by early October. Will that be enough time?

There's no telling, so here's my plan.

I'm not going to register for the half marathon until this chemo is over, but otherwise I'm committed to it. I'll let you know how I'm doing on this blog.

In the meantime, the half marathon has the Leukemia and Lymphoma Society as its official charity partner, and I have a friend running who is raising money for them. I do not know how much she's raised, but let me put in a pitch for supporting her, which you can do at this website.

She's trying to raise $100 per mile. Even $1 per mile ($13.10 total) would help her do that, and if you sponsor her through her website, there's no mailing of checks involved or anything.

Oddly enough, the race is called the "I Run for the Party" race, and there's a big block party on a street with some honkytonks on it—Nashville's Broadway.

So it's not a "Race for the Cure" or anything, but, hey, if party-goers want to support the Leukemia and Lymphoma Society, I'm certainly all for it.

A Dare

Let me give you a dare.

I was released from the hospital about 3 weeks ago. While I was in the hospital I received 14 units of blood, and to this day I'm still below the normal range on my red blood cell and hemoglobin count, which are responsible for providing oxygen to my body.

As of today, I'm pretty sure I can't run further than a half mile straight, and even then it's a pretty slow jog.

I'm going to do a half marathon on November 12, hopefully in under 3 hours.

Here's a page with a list of half marathons in November in Indiana, Oklahoma, Arizona, California, Vermont, and Wisconsin. That web site also has training tips for doing a half marathon.

Anyone want to try to get ready for a half marathon by November with me, but in your own area?

If we include December, then we can add Texas and northern California to the list of locations. An internet search might find you one closer to you.

Remember, I'm making allowance for walking 2/3 of it.

Doing something like that just might change your life.

And if you're really a go-getter, and you want to make it a fundraising idea, then here's how you do that.

I did some searching on the internet, and as I would have guessed, most web sites think that going from the couch to a half marathon in 2 or 3 months, even if you walk 2/3 of it, is ridiculous. So keep that in mind, but I'm not retracting my challenge. I've been running throughout my 40's, so I should have the bone and muscle "infrastructure" for it.

You might want to get a physical. If you get the right doctor, she might say, "Hey, if you build up for this and walk a lot of it, you can do it"

Or she might not.

Let me throw in a plug for the documentary Fat, Sick, and Nearly Dead. It can be streamed for free on Netflix. Blockbuster and Amazon have it online, too, but not for free.

The idea of "rebooting" and living differently afterwards is one I highly recommend. My latest reboot was forced upon me by leukemia (one more benefit of leukemia), but it's not the only "reboot" I've done.

Most of us could use more reboots.