Monday, November 28, 2011

Suffering and Character

I've spent the last few months facing things I've never faced before.

I've been relatively healthy and pain-free most of my life. Awaiting sickness and pain as the only route to health is very different than anything I've ever experienced.

I feel less courageous than ever. I feel how out of control I am. How sick will I get next month? How bad will the radiation burn me? Muscle cramps, hemorrhoids, mouth sores, fevers, uncontrolled vomiting, or even heart attacks ... what's coming my way on the route to healing?

Shoot, I don't even want to face the pain meds. When the cramps and nerve pain were bad enough last month, they gave me Dilaudid. Young drug addicts may like dilaudid, but the waking dreams and confusion that resulted were unpleasant to me. Worse, Jerry, whose getting his last dose of chemo before transplant today, told me about the hallucinations he had on Dilaudid. He had an abscessed tooth during his first round of chemo, and they were giving him doses of Dilaudid 30 times higher than they gave me. He hallucinated wildly when they were doing so.

Don't feel sorry for me. Considering the route I've been on, I've been through very little. In the hospital, I've seen many people in worse condition going through much worse pain, much worse sickness, and much worse confusion. I'm just suffering through the specter of what's coming, and then only in the moments when I give thought to it, which is not often. My blood counts are coming up, and I have a month break to get stronger before they hit me again. I have only insignificant symptoms remaining from the chemo I've been through.

The only reason I bring up my fears is that I want to recommend an article that's on the Christianity Today web site. It's about suffering, and it is remarkably circumspect.

I hope that's the right word. I'm trying to say that this guy looks at suffering from many perspectives and with remarkable insight.

It's written from a Christian perspective, and it starts by using Jesus as an example. If you're not a Christian, do not get stuck on the first page, imagining that this is a dull sermon in print form. You have to get to the part about Aleksandr Solzhenitsyn and also the firemen of New York.

That's not an article to miss.

As for me, I'm learning from my fears. I'm learning to trust in God in a new way, a much more out-of-control way. I shudder to think how much I've prayed in the past, then went off to figure out ways to do God's will for him. Worse, I wonder now how much I've confused prayer with ESP, as though if I concentrated, hoped, and empathized enough, then my prayers would be answered.

Today, I feel like a leaf blown in the wind. I am so grateful that spinal taps scare me so much. I praise God for those tiny taps on my spinal nerves that make me feel so vulnerable.

Those things have taught me to trust God. I would say that I feel "in his hands" more than ever, but "in his hands" seems so different now. His hands include the wind and the storm. It's not just when I'm comfortably cuddled to his heart that I feel safe, but as I tumble along in the wind with no control over where I'm going.

I'd like to say, "Though he kill me, yet will I praise him," but really, that's a terrifying thought. There's a lot he could put me through, very easily, and I don't have much confidence in my courage anymore. Today, though, I feel "in him" more than I ever have.

And I'm grateful to feel control wrested out of my hands and put into the hands of the one Steve Saint called the Master Storyteller. I hadn't known I still had such a tight grip on the reins.





Friday, November 25, 2011

Black Friday Is Not So Black

First and foremost, before everything else:

My friend Jerry started his transplant chemo on Wednesday. He's not as healthy as I am. He worked in a coal mine for over a decade earlier in life, and his lungs aren't the greatest. He also had a major heart attack a few years ago, so his heart only runs at about 60% normal capacity.

The doctors told me there's a 20% chance of the transplant preparation killing me, and there's another 15% chance or so of dying from Graft-versus-Host disease afterward. The doctor told Jerry that he had a 40% chance of surviving the whole process.

As it turns out, his brother is such a good match as a bone marrow donor that they raised his survival chances to 50%. Still, that's not the kind of treatment that's easy to face. (His attitude is awesome!)

Today is considered day -5 (minus five) for him. The first day of chemo was -7. They'll give him six days of chemo, and then on the seventh day he'll have a day off. That day will be -1. The day after that is day 0, and it's the day they give him his brother Dump's bone marrow stem cells.

Jerry told me there's a T-shirt out that says, "Life begins at day zero."

Please pray for Jerry.

Oh, and I already asked you to pray for him about his liver function. I was praying that God would just heal his liver, and the counts would be good. That didn't happen, but what did happen is that they looked at his liver on a PET scan and decided that his liver was doing well enough to go through with the transplant. His transplant was delayed for the liver counts, but they put him right back on track. They think the elevated liver counts in his blood is because of an overdose of Tylenol or from his gall bladder, which they already know has problems (which can wait till the leukemia is cured).

Spinal Taps


This Thanksgiving I am especially grateful that lying around for about eight hours did the job for preventing the leak of spinal fluid. Unlike previous spinal taps, I had no headaches the day after, and today has been just as headache-free.

For those that have never had a spinal tap, they stick a long needle through your back muscles, then through the coating around your spinal column, where all your nerves are. There's a fluid in the spinal column. In my case, they drew off about ten millimeters of that fluid, then injected some chemotherapy, called methotextrate, to kill off any leukemia cells that might still be floating around in the fluid.

Apparently there are several layers to the coating around the spinal column. My wife was just telling me that when a woman in childbirth gets an "epidural," they only go through the outer layer. The danger in an epidural is that they'll go too deep and create a leak in the spinal fluid. In a spinal tap, they have no choice. They have to go all the way into the fluid.

Anyway, when they're down inside your lower spinal column, they're right next to all the nerves of your lower body. Each of the last two times, they managed to tap those nerves with the needles, shooting tremors through my buttock and thigh. I think they tapped the nerves three times yesterday.

It's really not bad. The jolt is very, very quick, almost too quick to actually be painful. But it's somewhat terrifying. In the end, my nervousness was much worse than the procedure.

I have one more to be frightened through next Wednesday. That one will be in the afternoon. Day before yesterday it was in the morning, and I think it made the tension and my sensitivity to pain higher. There's not a lot of pain involved, but that shot with the lidocaine does burn as it goes in. It's much worse than an immunization shot. The radiologist told me that some people prefer to get the spinal tap without the anesthetic because the big needle hurts less than the lidocaine does.

Further, the lidocaine only numbs the surface. You can feel the needle pressing through the muscle sheath deep down, both as it goes in and as it comes out. That's not real painful, either, but it is a strange, somewhat uncomfortable sensation. It's like your back calls up to your brain, "Hey, I don't know what's going on, but something's not quite right down here!"

Thanksgiving


Early yesterday morning I got the first of what I knew would be coming all day ... Happy Thanksgiving texts. I can be a grump about those things. "Yeah, I know it's a holiday, and you're texting 35 people, and I happen to be one of them. I'd rather have a real conversation with you on a different day."

A little later in the morning, I saw something either in a commercial or on the Macy's Thanksgiving Day Parade that reminded me that there are a lot of people almost alone in the world. They don't get texts, phone calls, or cards; not on Thanksgiving or any other day. Suddenly I felt like a real jerk, and I decided that what I would be thankful for on this Thanksgiving weekend is all the family and friends I have who want to include me on their group "Happy Thanksgiving" texts.

This morning, I went out to Dunkin' Donuts with my family, including my mother-in-law. That was nice. Donuts are no longer part of my diet (never again), but I had a breakfast sandwich there.

The breakfast sandwich is important. I still don't have my old appetite, especially in the mornings. Having a smaller appetite would have been great a few years ago, but it's not good now. I'm working hard not to lose anymore weight because twenty pounds of excess is a good thing to have before a massive chemo dose and bone marrow transplant.

Afterward, my wife and I visited Jerry at the infusion center, while he was getting his chemo. They're giving it to him on an outpatient basis! Who would have thought?

Then we went out to visit a lady, Sylvia, that I met in the hospital. She runs a home where she houses functional but mentally ill ladies. We visited with her for a while, then made arrangements to do a little get together with those ladies next week. Sylvia will provide hors d'oeuvres, and I'll tell some Bible stories that have been popular with my kids and their friends.

Sylvia doesn't know it yet, but after we left we called a friend of ours who plays guitar so that we can do some Christmas carols with them, too. She's going to drive out to Nashville just to do that with us.

I'm kind of excited about it.

I hope y'all are having as great a weekend as I am!






Wednesday, November 23, 2011

Spinal Tap and a Schedule

My spinal tap was scheduled for today rather than yesterday afternoon like they originally planned. I have a second (actually, a fifth) scheduled next week.

I'm not so scared of this one, though the idea of a three-and-a-half-inch needle pushing its way into my spinal column isn't a real pleasant one. I know to lay down for a couple days, as close to every minute as possible. Hopefully, I'll be able to sit up afterward without headaches.

I did get to talk to Dr. Strickland yesterday, which was comforting. My blood counts have been coming back very slowly. That didn't bother him at all. "We gave you a big dose of chemotherapy," he said.

When he said that, I told him about the nurse's reaction when she was giving me the chemo last month. First she remarked about how high the dose was, and then when I told her I was getting twelve doses, rather than eight as she had thought, she acted shocked. When I told Dr. Strickland about that, he said, "I promise we've given that much to other people, too."

He said the high dose is also why I lost so much hair this time. Besides my bald head, I haven't shaved in over two weeks, and there's not a bit of stubble. Not that I'm complaining about that.

He said there's no sense rushing. We need to be thorough so the leukemia doesn't come back. We also need to be safe. We might as well do everything we can to verify there won't be another heart attack.

My cardiac appointment is December 14. The wait is necessary to verify that no damage was done to my heart by the heart attack two weeks ago. It's close enough to the holidays that Dr. Strickland said it's worth putting off the transplant till the first of the year. We can get the prep done during the holidays, then get started right after.

So at this point, I'm on a six-week vacation with two spinal taps (today and next week), assuming they're actually clear of abnormal cells like we're expecting, and a cardiac appointment, assuming my heart's okay when they check it.

The time will be nice. I'm working on another book, besides the one I want to write on this whole leukemia process, and I want to revamp my Christian history web site so that it only focuses on the early Christianity, up to A.D. 400 (though I'll keep the section on the Reformation). All that will take longer than six weeks.

Okay, that's the news. I'm in the radiology waiting room, so I'm going to close now in case they call me for the spinal tap.

Oh, one more thing: When I come for a spinal tap I wear sweat pants and a t-shirt because it makes it easier to expose my lower back. Today, I grabbed out the "It's all good" T-shirt that little Katie (she's 5) got me for my birthday. It's still a pick-me-up to see the shirt. It always encourages me, and that's especially nice on a spinal tap day.

Sunday, November 20, 2011

Things are going to be slow for a while ... I hope!

I have to wait until December 14 before the transplant can happen because they want a four-week checkup on my heart. In the meantime, the medicines the cardiologist gave me keep my blood pressure so low that I'm like a teenager when I stand up. I never know when I'm going to come close to blacking out. This coming week, I'm going to call the cardiologist, ask what I'm allowed to do in the way of exercise, and see if I can talk him into cancelling a couple of the meds.

My blood counts were almost the same on Friday, so there will be no spinal tap on Monday. They want my platelets, the cells that make our blood clot, to be over 50 before they go running a three-and-a-half-inch needle into my back. A count of 150 would be the low end of normal, and my platelets are at 39, which is a jump up from the 26 they were on Tuesday.

So Tuesday it's back to the hospital, check my blood, and if my platelets are over 50, then the spinal tap is scheduled for that afternoon. I've learned my lesson, so I'm going straight from the spinal tap to the back seat of the car, then straight to the floor when I get home. Vanderbilt really doesn't provide a place to lay around for four to six hours, which would be best, so the car and floor plan will have to do. It worked okay last time. I'll follow that up with a couple days of laying around; I don't care to go through any more two to three week long sessions of headaches every time I sit up.

Hopefully, it will be a nice break. My mom was out here visiting at the end of last week, my two oldest sons came on Friday, and we got a visit from friends of ours, a couple, today. I don't really dare go back to Rose Creek Village right now, as there are too many sick people, so getting visits from the healthy ones will have to do. We'll see most of my wife's family this week, and we'll have family for Thanksgiving, too. Waiting around for the cardiologist appointment December 14 could be a pleasant time. I seem to have my headaches under control. Between what was left over of the spinal taps, the potency of the last round of chemo, and dry sinuses from a couple separated weeks in the dry hospital air, plus autumn's reduced humidity—between all of that, it was difficult to figure out what was causing the headaches. Today was great, so maybe that's all under control.

Okay, that was all medical stuff, so here's some free interesting stuff ...

Covered in the Dust of Your Rabbi


The following video is part 1 of a teaching I found incredibly interesting. I don't want to take credit for some of Rob Bell's more liberal ideas, but there's no doubt he's an interesting teacher, and this subject—Covered in the Dust of Your Rabbi—is absolutely captivating for those that have read and re-read the Gospels. It will answer a dozen questions you didn't realize you've been dying to ask. (You can click over to Youtube and see the rest of the videos.)

One caveat. The original teaching was done by Ray Vander Laan, and Rob Bell does not get everything exactly right. There's places where Bell says all students, when Vander Laan just said some students. So tone Bell down just a bit for accuracy, and this will be one of the more moving teachings you've ever heard.

Ray Vander Laan has a completely different style from Rob Bell, and his DVD is expensive (in my opinion). It's shot on location in Israel, but for the serious student, it gives the background of Bell's teaching, and the on-location video adds another dimension to the teaching. (If you use my link to get Vander Laan's DVD off Amazon, I get a small commission; I'm supposed to tell you that.)















Wednesday, November 16, 2011

November 16: Update with a Sermon on the Side

I really need to do an update, but nothing seems very newsy. I'm sitting around my apartment waiting for my blood counts to come back up.

My kids are coming back out to Nashville today, maybe even any minute. I'm very excited about that. Even my two older boys, both working full time, are due out tomorrow.

Janelle watching soccer back in Selmer
My heart attack last week did throw off the timeline for my treatment. I have to have a December 14 appointment so that the cardiologist can verify that there was no damage from the heart attack. They need the four-week gap apparently, so I have a four-week gap in treatment.

I do have two spinal taps to do, one this Monday and one the next. They want to make sure there's nothing leukemic hiding out anywhere when they do the transplant, so they'll dump methotextrate into my spinal fluid again. That's a lot better than the Cytarabine, which gave me those unbearable muscle cramps and nerve pain.

I talked to my friend Jerry this morning for nearly an hour. He's back in Virginia, but he's coming to Nashville Monday for his bone marrow transplant. He has a couple things to do on Tuesday, but he's scheduled to start the chemo on Wednesday. That will be his day one, and he will get bone marrow and stem cells both from his brother on day 7. I think Jerry gets to avoid radiation because his leukemia never got out of his blood.

I didn't know that the hospital would do both the bone marrow and the stem cells, but apparently they want to give Jerry a good supply. Normally, it's one or the other. Here's a quick explanation for those who don't remember.

Our bone marrow has stem cells that can become any kind of blood cell, which is how the bone marrow produces the blood cells. When a bone marrow transplant is necessary, the doctors have two ways of getting it. They can punch about a hundred tiny holes into your hip bone and suck it out, or they can give you a hormone pill that forces the stem cells into your blood stream. If they do the latter, there's a machine that filters the blood to get the stem cells.

Manu at one of our favorite activites here at the apartments
Normally, they do one or another. Apparently, they're going to do both with Jerry's brother.

That's a good thing, really. Perhaps the greatest danger in a marrow transplant is the time it takes for the new marrow to engraft and begin making blood. During that time, the patient has no immune system, and the risk of infection or pneumonia is great. With such a close DNA match with his brother and getting a large dose of marrow and stem cells, perhaps the marrow will begin kicking out new blood cells very quickly.

The one issue that Jerry's having is that blood tests indicate some kind of problem with his liver. That is a always a danger from chemotherapy. His nurse is telling him not to worry about it, and they still have him scheduled to begin the transplant process Wednesday, but I'm praying anyway. I'm not messing around; I'm just praying God will heal his liver, and all his liver enzymes will go back to normal. Thanks for all of you who are praying with me.

Leilani got to visit a civil war reenactment. I don't know why there's a camel!
Hmm. This is longer than I anticipated.

This blog probably makes me sound like I'm pretty upbeat most of the time, and I am. That's not always easy, though. Sometimes there's long gaps where Christian fellowship is limited to my wife, whatever discussions I can have with nurses or other patients, and interactions across the internet. A lot of Sundays I'm in the hospital, or I have no immune system and shouldn't be out in public, so I stay at home with my family, which is great, but it's not everything I need as a Christian.

So Monday I got hold of a guy who holds a Friday night "cell group" meeting near the apartments here. I've only been to one, and every other Friday I've been unable to sit up, in the hospital, or without an immune system. He sends out these little devotional texts every morning, though, and I've been keeping up with him through those.

We got together at MacDonald's and had coffee. My immune system's still week, so I wiped the table with an antibiotic wipe, wiped my coffee cup down as well, washed my hands, and didn't touch anything. Once, when I forgot and put my hand on the seat, I immediately washed it with antibiotic ointment. Worse, a friend of the guy I was meeting came up, and I shook his hand, being polite. As soon as he left, I washed my hands again. It feels weird doing that, but it's necessary.

Anyway, we got to sit and swap stories for a couple hours. It was great, and it lifted my spirits a lot.

Christianity was never meant to be an isolated "just me and Jesus" religion. I've heard people say that, and they usually include "and my Bible." Unfortunately, if they actually read that Bible, they'll find that it teaches that people who isolate themselves are likely to wind up with hard hearts, deceived by sin, not enlightened by their Bible reading (Hebrews 3:13).

We need each other, and it's supposed to be that way.

Whether you're a Christian or not, if you read this blog, you probably know that I am. The following video is less than four minutes long, and it sums up a lot of what I would want to say to modern Christians, only I can't say it quite as well as Francis Chan does:

Saturday, November 12, 2011

Back at the Apartments

My neutrophil count was just 430 today, which was disappointing. It was 400 yesterday, but at least it's increasing.

The resident (or intern, I never know what to call those doctors) came in early this morning to tell me they'd probably let me go home. So we packed our bags, asked for a cart, and then loaded the cart with our bags.

When the main doctor, Dr. Reddy, came in later, she looked at the bags, looked at us, looked back at the bags, and she started laughing.

My wife said, "Not to send any subliminal messages or anything."

Despite, or maybe because of, our subliminal message, we got to go home.

Today is race day, the day of the half marathon, so our first stop was the emergency room, where they'd taken Alaina after her sister and Mala, the two people she was running with, had carried her across the finish line unconscious.

We had a great visit. Alaina was doing fine.

So let me ask you: Alaina's a girl, petite, and she collapsed unconscious at the end of a half marathon. What happened?

I didn't even have to ask. She drank only water, no sports drink, on the run.

If you know any runners or any sort of endurance athletes, do them a favor. Tell them, NEVER DRINK JUST WATER ON A LONG ENDURANCE EVENT, ESPECIALLY IF YOU'RE SMALL!

If you don't drink enough water, you can become dehydrated. Your performance will suffer, and you may get sick. IF YOU DON'T GET ENOUGH ELECTROLYTES, YOU COULD PASS OUT AND DIE!

It's amazing that's not required knowledge at half marathons and longer. When Alaina collapsed, someone tried to give her water. They were just making her situation worse. Thank God an emergency team was right there, snatched her up, and immediately started pumping salt water into her veins.

I don't know how I missed never telling Alaina about hyponatremia. It means "low salt," and it kills about one small, blond, female runner a year in the United States. Curable with a salt tablet or a good dose of gatorade during the race.

What happens is that as you sweat, you lose salt, an essential ingredient in most of the cell processes. It makes your cell fluids able to conduct electricity, which is real important in the brain.

If you only drink water, then you replace your cell fluids with pure water, diluting the salt concentration even more than you did by sweating. The more you drink, the worse it gets.

Like I said, dehydration can make you sick, and it will definitely degrade your performance if it gets bad. HYPONATREMIA CAN KILL YOU.

Please, pass it on. I pass it on to every runner I meet, and I still somehow didn't get it across to Alaina, my secretary that I see—well, did see—at least twice per week.

You can get salt from drinks like gatorade, or even by eating chips during the race. Many companies make gels that are a lot easier on the digestion and get into the system faster just for endurance events.

Okay, enough said on that.

With that all said, Alaina did a heroic job running the race. She has been sick this week. I told her, "Above the neck, you can run through sickness; below the neck, don't run." Her cold was a head cold, so she ran, which was probably miserable, and she finished, despite NOT GETTING ANY SALT. Heroic.

So she's been treated, with simple saline solution, and sent home. (Note, the emergency room knows about this. At one point, while I was there, Alaina asked for water. They sent her Powerade and told her she wasn't allowed to have water. Good for them!)

I'm at home now, too.

One really neat thing. I got a list of all the people who had come for the race with Alaina (and Mala and Abby, her cohorts), but I wasn't released in time to see everyone at the finish line. So we saw Alaina in the emergency room, then we ran across Abby's husband and kids, as well as Kristee, an old friend, and her kids, on the way to the parking lot. Later Mala and her son, Yakyn, came by to visit at the apartment, so I saw everyone. It was a blast.

Now it's just my wife and I, settling down to a romantic meal, for which we are giving abundant thanks that it is not hospital food.

You know, I want to be nice, but to be honest, the very thought of hospital food makes me ill. The sight of those trays is enough to put me in bed. I know that the cafe manager is trying to bend over backwards for me, sending the things I request, but it's too late. Whether I wanted it to or not, the whole hospital cafe experience is etched into my subconscious, and it affects my appetite and how well I feel.

I had lunch here at the apartments. It was stuffed bell peppers, sent from Dossie back at Rose Creek Village. It was pure heaven, and I'm being honest when I say it was healing from the whole idea of the cafeteria food. We are going to have to make a new plan when we get back in the hospital, involving purchased food and only minimal input from the cafeteria.

Well, that's enough for one day. More tomorrow!


Friday, November 11, 2011

Going Home?

It's November 11. Veterans Day.

I had an uncle that was shot and killed in Vietnam. I know that there's a price for freedom, and it involves men who are willing to say, "Give me liberty, or give me death!"

So I want to express my thanks to all those who have fought for freedom, though I am not always ready to express my thanks to those who have sent those brave men to fight for much worse reasons. For today, in honor of our fallen fathers, brothers, sons—and now mothers, sisters, and daughters—I will leave evil leaders unnamed.

Thank you, brave defenders of freedom.

I got my counts back. White blood cells, 1.0, and neutrophils, 400. Good deal. I have an immune system.

I also got the results back from my stress test. No blockages.

Okay, so I had a heart attack Sunday night. My heart is good, there is no damage, and the arteries of my heart show no blockages.

In other words, my heart is in somewhat better condition than I would have dreamed possible before I had the heart attack. I assumed that as a 50-year-old, potbellied male, I had to have blocked arteries. Man, all that exercise, fiber, and vegetables paid off!

But now I'm taking a couple heart medications. I can assure you that if I were not awaiting a stem cell transplant, I would go home, put those medications away, and never go see the heart doctor again.

My heart is good, and I have no blockages. Why would I want to be taking medications that supposedly make life easier on my heart when there's no apparent problem? They can say all they want that these meds are safe or have no side effects, but messing with the natural process of the body is ALWAYS a bad thing to do.

I already talked to the resident this morning about it, and he said if he talked to the cardiologist, then my meds would probably just be increased because my blood pressure is unusually high this morning (which I blame on the heart meds, which are supposed to decrease my blood pressure).

Unfortunately, I'm in a bind. I'm somewhat at the mercy of the transplant doctors, who could say, "We're not willing to do a transplant on you, and possible give you another heart attack, without you being on these prophylactic cardiac meds."

Please pray for wisdom for my arguments, or just God's miraculous intervention. I really want to be off these heart meds. They scare me, and I don't believe the doctors know what those meds are doing as well as they claim to know.

Now it's my turn to be told, "All things work together for good. Just trust."

Okay, okay. Doing so ...

Oh, and concerning the title of this post, we'll probably get to go home today. Fingers crossed, as I would really love a good shower. I have electrodes all over my chest, so I've been limited to sponge baths this week.

Thursday, November 10, 2011

Bouncing Back

Well, it's November 10th already. I've been on this journey four and a half months already!

My white blood cell count jumped to 0.6 yesterday. That's significant. Most of those white blood cells will be neutrophils. All infections should be taken seriously, but now my body can join the antibiotics in fighting against this one, which is already under control.

Very good sign.

They're going to give me a stress test today. The hematology doctors want to send me home today. We'll see what the cardiologists think. Then, once I get home, we wait and see what damage I did to my schedule with Sunday night's heart attack.

I'm still amazed that was a heart attack, so brief, so painless, and in the end, no damage done! Good may have been done, in fact. If there's a blockage, better to find out now than to have had the heart attack a week after the transplant, when I would be completely depleted physically, and the damage may have been far worse ... or fatal. I've never thought of a heart attack as a blessing, but this one could be a dramatic blessing.

I'm praying it's not overtreated, but we do want to know how bad the blockage is (or blockages are) before we move on.

Tidbit for the Day


For me, my path involves looking for the sustenance of God through this leukemia journey. But it's not that I don't think God can't miraculously heal.

I think you'll enjoy the story below. I don't trust the 700 Club, and I certainly don't endorse them. You can tell, however, that the people in this video weren't using the 700 Club's "Secrets of the Supernatural," which they try to foist on us at the end. The people involved were simply parents in a hopeless situation crying out for mercy.

You can look up the doctor in the video on the internet. She really works here at Vanderbilt. This is a true story.




Wednesday, November 9, 2011

Peaceful Day

I can't feel the weather here inside the hospital, but it looks like one of those drizzly, wet fall days that will send you scurrying for a hot cup of cappucino or a bowl of soup.

Days like this make me feel like I'm in a C.S. Lewis or George MacDonald novel. The British Isles are well acquainted with days like this.


My wife wrote a great blog today about our view, specifically our ability to zoom.

I got the report back on my echocardiogram. It was still good, maybe even very good, but not great like my October echo. This probably due to chemotherapy, and my heart may be back to great within a couple weeks. There's no evidence of a weak area of the heart from Sunday night's mild heart attack.

As soon as the cardiologists can get their hands on me, which will be as soon as I have platelet counts in the hundreds, they will be probing for blocked arteries. I read on the internet about how well they can find blockages, and I'm impressed. I'm not as impressed with suggested solutions, so there may be some head-butting happening. I'm hardening my forehead even as we speak.

Thank you for all your prayers. I'm getting so used to being ill enough to wave at death off in the distance, or sometimes close enough to smell his breath, and then having the doctors do great work which always works out to the best possible scenario, that I could be in danger of taking the blessing of God for granted.

Right now, I'm not. I am infused with gratefulness. I think God knows I could not possibly be more grateful than I am.

But there's been some great answer to prayer, and it's become so normal that I don't always report it well. I had a heart attack, and it did no damage whatsoever. I had an infection and fever while I had no immune system for the third time, and antibiotics have always been able to treat it. I've picked up no flus, gotten no hospital-bred infections, and I've had five weeks total now of being completely susceptible to microbes.

Those are things to thank God for.

Speaking of the infection, Dr. Reddy came in this morning to tell me they finished typing the bacteria in my blood. "It's the same one as last time," she said. "Some weird bacteria we don't know what it is. But the antibiotics are working, so ... okay."

The word "weird" comes up a lot in the hospital around me. Now even my bacteria are weird. The doctors say this bacteria is either carried in my skin or my mouth.

My own, personal, weird bacteria.

One quick funny story. I hope I haven't told it already in a previous post.

When you're going through what I'm going through, you get stuck with needles a lot. Nurses are always looking for veins in my hands and forearms. One particular day, I told a nurse that it'd be better if she had to do this with one of my teenage sons. Her reply cracked me up.

"Oh, I know," she said. "My son is sixteen, and he plays football. Sometimes, we sit at breakfast, and I look across the table and think, 'Ooh, I'd love to stick him.'"

I laughed so hard it probably made it pretty hard to finish sticking me. They're pretty good at this stuff, though.




Tuesday, November 8, 2011

Catching Up

I'm back on my feet this morning. At least somewhat.

My wife told you the story on her blog, so I'll spare you most of the details.

I spent most of the weekend in a haze. Saturday was fevered dreams, most of which involved discussing or contemplating medical things which were over my head, and which I had to earn the right to talk about. So whenever I woke, I didn't want to go back to sleep because I felt like I didn't have anything I was allowed to dream about. Sleeping just seemed like intensely hard work, not rest.

Fevers produce delirium, and you can reason in any direction in a delirious state.

I can't remember much of the weekend, except that to me the emergency room seemed too busy to give any priority to getting antibiotics for me. Nor did I think they understood what a 0.1 white blood cell count meant. So any time I woke up, I checked on my antibiotics, and I tried to get across to them that I didn't care about medications for headaches or nausea until I was getting antibiotics to treat the cause of the headaches and nausea.

Saturday night, I was so weak that when I stood up in the middle of the night I passed out, pulling down the IV pole with me. That was a fiasco, handled very quickly and very thoroughly by lots of people. I just remember standing up and sitting down and people pulling my pants down because there was blood on them. I just did what everyone said and went back to bed.

I started waking up out of the haze Sunday afternoon, but it doesn't seem like I was back in reality until yesterday morning.

I had a mild heart attack Sunday night. If they hadn't told me what it was, I would never have known. I felt a heaviness on my chest, and it took a little more effort to fill my chest with air. My wife tells me that I asked for nausea medicine right before, I think. Her report of what happened will be more accurate. After about 10 minutes, my chest felt fine, but I broke out in a sweat, mostly on my head. I never considered that something so mild could be something important. If I hadn't been getting blood at the time, I'm pretty certain I would not have reported the chest heaviness.

So, based on a 15-minute discussion with the cardiologist and about 5 minutes of research on the internet, though I did make the effort to skip several ehow, and wiki-answer sites to get to an actual cardiologist-run site, here's what happened.

Your heart doesn't just provide blood to the whole body, it has to provide blood and nutrients to itself, too. I think the first branches off the aorta as it leaves the heart are the left and right coronary arteries. The left coronary artery splits into two more major arteries, and all three have numerous smaller branches that keep getting smaller until they end in capillaries, where the blood cells go through single file, dropping off oxygen and nutrients and picking up waste.

In the arteries of your heart, about 45% of the cells are red blood cells (40% for women). In mine, on Sunday night, about 23% were.

The red blood cells carry nutrients as well. I hadn't eaten more than a few crumbs in 48 hours, so those few red blood cells were not well-supplied.

My heart itself had been running at high-speed for that entire 48 hours, never dropping below 90 beats per minute, and often over 140, about the heart rate of a jogger at a moderately difficult jogging pace.

So somewhere among those coronary arteries, probably in a very small one because my heart attack was very mild, there was enough blockage that between the blockage, the thinness of my blood, the hard work of my heart, and the lack of nutrients and probably water as well, a small section of my heart called it quits.

It's possible for that to happen without damage to the heart. (I'm thinking that would happen only because the blood returned to that part of the heart pretty quickly. Not sure.)

The reason that they know it was a heart attack is because they immediately took blood, and I had elevated cardiac enzymes, indicative of a heart attack, and apparently the symptoms I describe are textbook heart attack symptoms. I didn't know that.

My EKG afterwards was normal. I got an echocardiogram, which is basically a long, careful ultrasound (sonar) reading of the whole heart, using exactly the same technology used for birth ultrasounds (which is how parents can know the sex of a baby). I haven't heard the results back from my echocardiogram. I had one a month ago, and the cardiologist told me yesterday that my October echo was " good; no, better than good."

So, hopefully I'll hear today whether anything has changed.

One thing has changed, which is that the cardiologist got the doctors to raise my minimum hematocrit, the percentage of red blood cells in the blood, to 30%, rather than 25%. I've gotten blood two days in a row. I'll get blood again today to get over 30%.

On the good side, my white blood cell count jumped to 0.3. That's still extremely low, of course, but it is a sign that my body's ready to start producing blood cells on its own again.

I feel great this morning, though I have nothing like my normal strength.

I want to say thank you to all the people who've told me they are praying for me (mostly personally, not through this blog, though I know there are people keeping up through this blog as well). There are so many such people from so many places, including entire churches, that I'm embarrassed to list them. I'm a little awe-struck. It almost doesn't seem right.

But I'll take it.

Thank you to all of you. May such love abound in the earth.

For the record. I still believe that all things work together for good for those who love God and are the called according to his purpose (which is everyone who will heed his call). It's all good!

We're not losing our motto, or our faith.

By the way, I got this blog's motto—It's all good—from a little girl for my birthday. Thanks, Katie!

Monday, November 7, 2011

Friday, November 4, 2011

November 4: Living by Grace

I've been talking to my wife and to friends about bravery a bit, though my talking to friends has been by email and text mostly. My neutrophil count is zero, so I'm limiting human contact. In fact, I'm limiting contact, period. I touch as little as possible with my hands, and if I notice that I've touched something that someone else could have touched, then I wash my hands.

Hillside at the Grande View apartments
Back when I was going straight to transplant, before I had the third round of chemotherapy, Nurse Works told me, "If the first round kicked your butt, this transplant round will really kick your butt!"

Well, the first round didn't really kick my butt. Except the hemorrhoids, it was remarkably easy, even with a couple fevers from an infection from the PICC line. Thus, while her warning got me prepared, it didn't frighten me much.

The third round, however ... Now that kicked my butt. It's not the horrible cramps and muscle pains, though those were the worst actual pain. I barely remember those. It was whatever the Cytarabine did to my brain. It was miserable, unpleasant. When the other nurse, Meghan, saw me on Monday, she almost looked relieved versus the Friday before. "You seem yourself," she said.

Yeah, no doubt. The Cytarabine didn't really kick my butt; it kicked my brain.

So now, the thought of another round of chemotherapy, with the almost certainty of bad hemorrhoids, which I had again this time, and the potential of facing Cytarabine again, plus probably three more spinal taps ahead, is frightening. On top of that, the chances are good that I will get six total body irradiations. Picture a sunburn in your esophagus. Have you ever had heartburn? Picture heartburn, then getting a sunburn in your esophagus, and then going back the next day to get a new sunburn!

"Pain medication will be your friend," Nurse Works said.

Note: I really like "Nurse Works," and in person I call her by her first name, Esta. She is very nice, inspires confidence, and nothing negative is implied by "Nurse Works." I just like the name.

So I started to get a little bit frightened.

Now, I wasn't too worried about being brave. The most certain source of bravery is necessity. Based on my research, which is considerably less than that of the doctors here at Vanderbilt, I agree with their assessment that my likelihood of relapse, apart from the marrow transplant, is 99.9%. I have no choice. Now, I could ask for a reduced intensity transplant. Then I would get a little bit less chemo, enough not to frighten me, and only one dose of radiation rather than six. That would not frighten me. Walk in the park.

If I did the reduced intensity, the "non-myeloablative" transplant, no one knows the odds that I would relapse. I'm pretty sure that the doctors would advise against it but that they would agree to it.

It doesn't seem wise to me. My leukemia wandered all over my body out of my blood. It went to my spinal fluid, my lymph nodes, and my spleen. Our best shot at getting all of it before we install a new blood system seems wise to me, and before God, I'm comfortable with that. (It's still amazing to me how the whole process works!) If you know me, please pray that's a wise decision. I'd be open to you telling me you've got something from God thinking I should do otherwise.

Anyway, the point is, I was getting nervous about the pain in my future, though I knew I had no choice but to simply face it, even if I was a whimpering coward, though I was somewhat confident that I wouldn't whimper. It's not that I'm particularly brave, but I know that whimpering and timidity just makes everything worse. At some point, I would have to pluck up my courage, announce "I'm going to do this and do it well," and get on with it.

Until then, there was a lingering nervousness in my gut, if not in my Spirit.

My wife's been assuring me that I didn't need grace last week, I would only need it when the time came. She wasn't worried about me. God would come through.

I'm really not used to living nervously, and I don't like it. So yesterday, when I got a text from a friend asking how it was with my soul, I told him I could use some prayer for bravery and faith.

Now this is not any friend. This is a pastor from Uganda who's traveling in the U.S. for a while. I've spent a lot of hours with him, and I once drove him from Tennessee down to Florida. We picked up a hitchhiker together who had just gotten out of prison for a double homicide. We have a certain connection!

Anyway, later that day, I was walking. I got a phone call from a Memphis number I didn't recognize. I answered it, but the person just hung up. Wrong number, I assume. Then I looked up, and I saw the fall foliage on the hillside by our apartment, and there was something inspiring about it. "Thank you, Father, for this grand adventure," I prayed.

The most amazing thing happened. Every bit of nervousness just melted away. This joy came down on my heart, and I immediately sent a text to Wilberforce, the Ugandan pastor. "You been praying for me?" I asked. He answered, "Of course. Praise God."

I mention the phone call from Memphis because it gives me, on my phone, the exact time that happened, which was 5:13 pm yesterday. So if you were praying for me just before supper yesterday, you can take credit for really effective prayer.

So today, even after typing out everything I typed out above, I feel great.

It really is a grand adventure.




Wednesday, November 2, 2011

Amuse or a Muse?

News real quick: My blood counts are low, as expected, but I didn't need blood products today. I go back Friday to check them again. My immune system is bottomed out, with a white blood cell count of 0.1, or basically nothing, and it's expected to stay that way for about another week. The nurse told me there's some sort of cold going around, so she wore a mask as well as I.

I'm being very careful, as I should, and thank God there's nothing to report.

So ...

There's a half marathon next weekend here in Nashville, and three of my friends—ladies—are going to run it in my honor. At least one is collecting donations for the Leukemia & Lymphoma Society (feel free to contribute). As I walked this afternoon, I thought, "I'm going to go run that thing next year myself."

I may be fooling myself. Several people have told me about the lingering fatigue after a bone marrow transplant. But I'm holding onto the dream until Life proves otherwise.

Anyway, I got to crafting a Leukemia & Lymphoma Society support email in my mind as I walked, and I liked it so much that I thought it a sin to let it sit until next year. You can't contribute to my next year's half marathon yet, so you might want to consider Alaina's this year.

Here's the letter:

************************
Dear Sir/Ma'am,

I don't think I would have wanted to receive a letter like this in the past, but today, as one alive from the dead, I'm a bit more concerned about what's good, true, and beneficial than about what you or I like. Hopefully, you're of a better natural temper than I would have been in your shoes.

I am going to be running a half marathon in support of the Leukemia & Lymphoma Society. I would like to ask for a contribution in a rather exact amount.

I'd like to ask for the amount of your next trip to a restaurant, determined by your own best estimate.

Then, with my apologies in advance to those of you whose mindset is already such as I'm about to describe, I'd like to ask you one more thing.

Would you cancel that next trip to a restaurant and tell the reason to the person who invited you? Would you tell them that you wanted to purposely make a choice to make your life matter today and that you wanted to feel it enough to remind you to make it matter every day?

Do you know what the word "muse" means?

As a verb it means "to thoughtfully consider."

Do you know what the word "amuse" means?

At first I assumed it was the conjunction of the word "muse" with the Greek prefix "a-," which means "not." Thus, "amuse" would mean "to avoid thinking."

But I was wrong. As it turns out "amuse" is from the French amuser, which meant "to stupefy." It was a conjunction of ad- and muser, a word that meant "to stare stupidly."

No society has ever had as many amusements as American society. And no generation has had as many amusements as our own. We are devoted to stupefying ourselves and avoiding having to think.

We are the most pleasured and least happy society of all time.

In fact, I think that many of us have forgotten what it means to be happy. We only know how to be thrilled.

There is no satisfaction deeper than that of a deed well done, and there is no longer-lasting satisfaction than that of a life well-lived.

Few of us consider now how we ought to live. Among the few who do, guidance has become limited and scattered. Fools are as likely to be considered experts as the wise are. Finding the way is difficult.

What I do know is that there is power in a good beginning.

I pray that this letter is a beginning of happiness for you if you do not already possess it. I pray that you may possess the joy of a life well-lived. I am offering an opportunity to take one step, to deny luxury one time for the purpose of doing good, and in doing so, to develop a habit that will knock at the door of your consciousness each and every day. (Though I must clarify here that I am not asking anyone to forego all amusements, nor do I think that necessarily a good thing.)

I am afraid that I believe that the telling of it to another may be as essential as the doing of it.

Finally, for those of you to whom this letter has no application, please consider this cause if you have no other that pulls at your purse strings. And if you do, I thank you for the time in reading this letter, as I cannot say that this cause is better than all others.

Thank you,

Paul F. Pavao
Alive from the dead ... with a purpose





Tuesday, November 1, 2011

PICC Lines and Platelets

I had to get my PICC line pulled yesterday. Due to a computer glitch, it didn't happen until the end of the day, which led to a bit of interesting thinking about blood counts. I'm going to try to get more exact information today.

I'm sitting at the hospital with a platelet count of "<5." How much less than five I don't know, but you should see ... Well, just a minute, and I'll show you.

Platelets, as you may know from this blog, are the cells that make your blood clot so you stop bleeding. Anything over 150 is "normal," but most people have a count over 300. Mine, as I said, is something less than 5. It's common for people with such a platelet count to get red spots all over their body. It happened to my friend Jerry when his platelet count hit 4. (Jerry, by the way, is due back Wednesday to begin the transplant testing if his mouth has healed well enough from his dental surgery.)


They were worried about this redness! It was much worse today. Even more oddly, I never had a PICC line in my left arm. My computer somehow mirror-imaged this picture!
Anyway, they sent me home Friday telling me to keep a careful eye on the PICC line because of its redness. On Sunday it was worse, so on Monday morning I sent a message through the great and previously reliable "MyHealthAtVanderbilt.com" web site. It's also the place where I can read my own blood counts. I gave the nurse practitioner a very thorough description of how it looked. That was easier to do with words than I expected.

I didn't get a response to that email, but I did get a response to one I'd sent over the weekend. I figured that they had debated whether to deal with the PICC line, then decided to wait until my appointment today. I didn't give it another thought.

At 4:30 pm or so, I got a call from Vanderbilt asking whether I'd gotten a message from them. I told them I hadn't, so the person told me that Meghan wanted me to come in so she could see the PICC line. We hopped up and drove in, hoping to beat Nashville traffic. No problem, it was all against us.

Meghan took one look at it and said, "Pull it."

I asked whether we could check my blood counts already, since my platelets were already at 33 on Friday. I'm still officially at the height of chemo, so all my blood counts should be crashing. My white blood cell count, for example, is now 0.2, which is basically nothing. I'm being very careful about everything I touch.

She agreed, and another nurse took blood before she took out the PICC line. We then patched up the hole in my arm, which didn't stop bleeding very well. In fact, I just left the gauze and bandage on my arm all night, and you should see ... Oh, that's what I was going to say above. You should see what that bandage did to my arm with no platelets. I'm unusually sensitive to Band-Aids in the best of health, but here, look at this:

The circular part with the hole in the middle is where the PICC line was. Above and below it are bruises just from the Band-Aid being on overnight. Yikes.

Okay, so I'm in a room, and I'm just getting platelets (and I got that hole in my arm wrapped rather than bandaged). They're orange, but I'm told that if they get platelets from a pregnant woman, they'll be green!


They type platelets. I'm A positive. However, it's not necessary. You can get platelets from anyone.
I asked the nurse here how dangerous it was to have platelets under 5. She said something to the effect of, "Oh, it's dangerous. If you fall or bump something you could bruise badly, and if you cut yourself it could be hard to stop the bleeding."

So I asked her how low is too low, and she said that there are signs and symptoms. There's some term that I've now forgotten for the second time for little red spots breaking out on your body. The other sign, of course, is bleeding that can't be controlled.

So I asked her that if I saw the little red spots on my body, should I go to the emergency room. She said, "No. Just call in and ask what they want you to do."

Okay, so my interpretation of all that is that a platelet count of next to nothing is dangerous but not officially an emergency.

I guess this is a medical blog today. I feel great. I get winded crossing a room, but my red blood cell counts aren't that bad. Well, for a leukemia patient on chemotherapy, they're not bad. No pains. We're still in perfect fall weather. Hard to picture a better day.

Oh, one last thing ...

The platelet count didn't show up on MyHealthAtVanderbilt.com until about 10:30 last night. Like I said, the count was simply "less than 5."

I'm not a doctor. All I know is that my friend Jerry had blood spots all over his body when his platelets were 4. Mine were apparently 4 at best!

I told myself, "If this were an emergency situation, Meghan would not have sent me home. She had to know this was possible. She also didn't flinch at the thought of someone have red spots on their body, and she casually looked to see if I had any on my arms or lower legs earlier today. Jerry, too, waited overnight after he had those red spots, and he was just fine."

Nonetheless, I had to ask myself if this was the kind of thing you at least call the emergency room about.

I don't know what you do in such situations, but I ask God what to do. It's served me well for nigh on 30 years now. I really felt like I just needed to relax and go to bed, but your head and your gut don't always agree on such things. I can choose not to worry, but that doesn't mean I can just lie in bed and fall asleep.

I ended up getting a late night email from a missionary friend in Mexico. I emailed him right back and asked him to pray that I would rest. I told him my conscious mind wasn't worried, but that didn't mean my gut would let me sleep. Then I settled on the couch to read The Shepherd's Castle by George MacDonald, one of my favorite authors.

Fifteen minutes later, I was exhausted. I checked my email on my phone to see that my missionary friend had not only prayed for me, but he had typed a prayer back to me in an email. I sent him short thank you, then slept soundly till this morning.