Sunday, July 31, 2011

July 31 Update 2: Blood Infection

I'm stuck on the IV again, getting two different antibiotics.

I mentioned the fever Thursday night after the biopsy in the News from God post on Friday. I had a decent fever (103o) on Wednesday before the biopsy, then again Thursday night. Both fevers went away with a dose of Tylenol, but after the second one they got me hooked up to an IV of antibiotics.

So I'm living the tethered life again.

Friday morning, when I realized I was starting to lose my hair, which I'll cover in the next post. My last free hours before being tethered again.

I don't have any cells to fight infections with, so the doctors have to fight it for me. Not being tiny antibodies, they are unable to identify the bacteria by vigilantly traveling around my bloodstream, so they drew blood and looked at it under a microscope.

What's interesting is that they had to take blood twice to find out the problem.

The area where the PICC line goes into my arm was occasionally itchy and somewhat tender to the touch, as well as slightly more red than they would like. So what they needed to know was whether I just had a local infection, requiring dealing with the PICC line, or something more extensive.

Apparently there's a type of bacteria that will stick to the plastic in the PICC line. You can't get it out with antibiotics. You have to remove the PICC line.

Kind of like whooping cough. The bacteria that causes it can be killed with antibiotics, but that doesn't remove them from your lungs. They're hooked in there, and it takes a while for your body to remove them. That's why it's called the hundred-day cough.

So they drew blood through the PICC line, and they also drew blood the standard way, with a needle inserted into that big artery (or vein?) in the middle of your arm.

It turns out the infection was in my blood. Fortunately, the two antibiotics they began with were just the right ones to work on the class of bacteria--related to strep--that I have.

I'm still hooked to the IV, and they add a bag of the antibiotic on some sort of schedule I haven't bothered to learn. (I did make sure it wasn't what was causing the evening neck aches the last three nights, though.)

My temperature has stayed steady since Friday, so apparently they've got it right!

July 31 Update 1: Where I've Been

I've been unable to get on the computer for 2 days, so only those who know me on Facebook or in person have gotten any news, and that's not been much.

That paper is the description on one of the medications!
Of course, there's not much news. The pathology report isn't due until tomorrow, but no one's wondering whether it's going to verify what the doctor said about my biopsy being clean.

So for the last two days, it's been get up, get a shower, eat breakfast, see the doctors, see the nurse, do whatever exercise I'm able to do, go through a couple morning treatment routines, see visitors all day and nap in between, then have dinner.

Shortly after dinner, the left side of my neck begins to ache. Over the next couple hours it increases and a headache follows right behind. If it gets bad enough, I order an oxycodon and try to sleep. If not, I just try to sleep. By morning, after waking up a couple time for the nurses to take vital signs--and for a hemorrhoid treatment--I wake up feeling okay, though a little later than I've been waking up before.

Today I put all the visitors off until after lunch so I can write this update.

Also, last night's neck and head ache, the third night in a row of that, was much milder than the night before, so I'm hoping for something better tonight.

I talked with the nurse, and there's nothing I'm taking near dinner time to explain the repeated neck aches, which are not there at any other time of day. It's only in one muscle, and massage doesn't relieve it. Very weird.

Dinner continues to be "mystery meal," though yesterday the meals seemed closer to what's been ordered. There's not enough consistent in dinner to explain the neck aches, either. So far, our best guess is that I'm simply exhausted and should have gone straight to bed after dinner!

I don't want to write a long post, get interrupted, then never put anything up, so I'll put the rest in a couple shorter posts.

Friday, July 29, 2011

July 29: News from the Doc

I have a lot to tell you about. Well, it's not a lot to say, but it's a lot to type. So let me give you the short and sweet first, so that Hannah can feel free to write whatever she wants, then I'll add all the other stuff in another post.

The pathology report is not back yet, but so far everything is clean, and Dr. Strickland says that the biopsy they got is so "knocked down" that he can't imagine it won't be clean.

Oh, and apparently, Joel won't have to wait very long to see how accurate his bald caricature of me was.

More later ...

July 29: News from God

It's 4:42 a.m. Probably too early for news from Dr. Strickland.

Since I've created a situation, on purpose, where I'm living in a fishbowl, here's how I think: As stuff happens, sort the most interesting stuff out (how well I do that is up to you to determine), and then tell you about; try not to let anything be too personal to share, but do avoid the really gross stuff.

So this morning qualifies as pretty major, so I'm writing it up while I'm still pretty emotional about it.

At 4 a.m. I woke up for the second time tonight bathed in sweat. This time the nurse was waking me for vital signs. At 2:30 a.m. I woke from a bad dream about kids being trapped in some huge farm machine. I got up with a light headache, feeling chilled, tongue and hemorrhoids burning, sure I was running a fever, and thinking, "This is what I get for saying on Facebook that my body was beginning to heal."

I covered in my wife's shawl, went to the bathroom (so sorry that I have to talk about stuff like this), just urine, no hemorrhoids involved, then got out, rinsed my mouth with the salt & soda mix, and checked my temperature.


I was fine.

"Oh," I thought.

I put a second blanket on my slightly wet bed, covered that with my wife's shawl, got under those covers with my somewhat wet shirt, curled up in a ball trying to stay warm, and went to sleep.

The nurse woke me at 4; I jerked awake. She apologized for scaring me. I felt soaked. My tongue really hurt, and I'd been having another horrible dream, though I couldn't remember what it was.

After she took my vital signs, all of which were good by my current standards. (Pulse in the 90's is normal??? For me it has been for about 7 or 8 days.)

All the dark parts are sweat, including my belly
I got up and realized I was only cold because I really was pretty wet from sweat.

I went to the bathroom (just #1 again)--without the shawl, now aware that I was not in a feverish chill--but the salt & soda mix didn't do the job for my tongue like it has for two days. I had to dab "miracle mouthwash" on the sore to stop it from throbbing painfully.

I'm going backwards!

Then I realized I was able to dab miracle mouthwash on the sore.

For days my tongue has been so swollen that I couldn't much turn it left or right. I couldn't lick the outside of my teeth to clear my cheek of food debris when I chew. (That is a really nice talent to have that I have sadly taken for granted all my life.) Now, though, I had my tongue out of my mouth, turned completely sideways, the sore in plain view!

I'm pretty sure this second one is a face from my nightmare and not me.

A few days ago I had to force my finger down between the floor of my mouth and tongue to reach the sore, rubbing off all the miracle mouthwash in the process, so I ended up just gargling with it to reach the sore.

Miracle Mouthwash has Mylanta in it, so swallowing it after gargling was nice.

For the record the sore is visible in the 1st picture above almost exactly below the gap between my front teeth, right in the middle of mound of swollen flesh. It's hard to see only because my tongue, wet with new-found saliva, glistened in the flash of my iPhone.

If you didn't know the iPhone has a flash in its front camera, it doesn't. I used the normal camera, and I used the mirror to see what the face of the iPhone was showing. That was very challenging at 5 a.m., like learning to back a car using mirrors for the first time.

So, anyway, there really is a point to all this.

I get back to my bed, realizing that I might really be getting better. The doctor might really come back in and tell me that my biopsy is clear, and I could be going home in a couple weeks feeling--and actually being--completely normal; just happening to need a bone marrow transplant to know that I'll stay normal.

When I thought about going back to real life, I started thinking about all the things I worry about. I don't think people would consider me a worrier, but there's a certain amount of tension in my life, and since I'm trying to pull a business out of what was once terrible debt--and is now just bad debt--there's been a fair amount of money worry for sure.

I felt a tension rise up in me that I haven't felt in weeks. Really, in here I basically never worry. I just give myself to the moment, and I try to bless the people I'm with, even when they're doctors driving something like an ice pick into my pelvis, then poking around to suck marrow out. (They're obviously blessing me, so I'm trying to give something back, and these doctors are a blast.)

I realized there's been a problem with the way I view life.

Let me tell you again that I've known all along that this is just the preparation for the second half my life, to be lived, most likely, with someone else's blood and immune system (there's got to be an analogy there). I've just been trying to pay attention and learn what I'm supposed to learn.

As I stood there, looking at my pillow, feeling the tension of life drift away as I came back to the moment, I heard God whisper, "I just want you to believe I'm for you."

I did know that. I just didn't really know that. And I certainly didn't know what that meant.

Being who I am, I long to explain what that means to me now, but there's no way to explain it. I sobbed an hour ago, and it's 5:30 now, and I'm sobbing again.

Probably just exhausted; I should really go back to sleep and get myself under control. (No sense giving up all my manliness!)

I guess I'll get a clean biopsy today. Maybe not, but somehow I think I got what I was supposed to get.

Thanks to all of you who played a part in that.

Oh, by the way, Sue Johnson told me she didn't lose any hair till a couple weeks after her chemo, so I still have some time. (Yippee, right?)

Thursday, July 28, 2011

July 28: The Biopsy and an Apology

My wife's sister expressed a little dismay that she wasn't among those included in people I'm sure read my blog to the end (July 26). So did at least 10 others. But maybe my brother James said it best of all:

"What the heck! I read the whole boring thing! Jeez Bro! I love you man!"

Dr. Lammers preparing for biopsy
So I thought I was just jabbing at my own long-windedness, but apparently I stepped on a lot of toes. I should know better. I've been alive for 50 years—and paying attention for nearly 40 of those—and I've never seen being self-conscious and apologetic in advance do anyone any good in any situation.

So now I'll apologize afterwards. That was a stupid comment I wrote about people not reading all of that blog.


I hear a lot of comments about my being strong, which I really appreciate. Sometimes, when I'm worn out, I'm pretty emotional, and the compliments make me cry.

But I want to make it clear that the biggest temptation I struggle with here is strength.

For example, this morning I knew the biopsy was coming. I made up my mind that whether the biopsy was dirty or clean I was going to face what was coming as God's will. I made up my mind to be strong and have a good attitude.

But I felt awful.

I'll let Hannah tell you about the birds that came to watch
I'm sure I could have been strong, maintained a positive attitude, and cheered up the people around me even while anxiously awaiting the marrow results.

But my strength is my enemy. If I had relied on my strength, I assure you that the hemorrhoids around day 10 would have wiped out my entire supply.

I'll let her tell you about the "good luck" gloves, too
So this morning I stopped. I climbed into bed, rolled onto my side, and started singing songs. Lorie (or Hannah, whichever you know her by) came and sat by my side and prayed for me. We got in the presence of God, and all need for strength disappeared.

Thou wilt keep him in perfect peace, whose mind is stayed on thee. (Isaiah 26:3)

Sorry, I memorized that verse many years ago in King James English.

In God's presence, you don't need strength. Truly, it's all good.

In your presence is fullness of joy; at your right hand are pleasures forevermore. (I think that's Psalm 16)

Pain and Conversation Value

The bone core
After the biopsy, Dr. Strickland asked me how I was doing.

"That was nothing compared to what I've gone through on the other side of that door," I said, pointing to the bathroom.

Dr. Strickland, who was watching Dr. Lammers perform the biopsy, said, "I'm sure Dr. Lammers will be glad to know that his biopsies are better than hemorrhoids."

In fact, there's not that much pain involved in a marrow biopsy, and it's a really bizarre experience. There's just nothing with which to compare the feeling of someone poking around inside your hip bone while you're awake. (Um, without Lidocaine, I assume it would be intolerable pain.)

So, I started thinking. You know, a marrow biopsy is worth having. The experience is probably of greater interest than the pain involved. (I met someone who volunteered for one just to provide her school with some healthy marrow for comparison.)

Hemorrhoids and tongue sores? Much greater pain, no experience value. I don't recommend those.

And then there's the conversation value. You'll probably enjoy the following video. (I'm sure that these YouTube videos of Brian Regan are pirated, so I only post or link to the short ones, and if you like them, maybe you'll buy his DVDs, CDs, or go see a show. Well, don't go see a show. They're all sold out, and they're all expensive. More power to him. He's funny, and he's clean. Rare combination nowadays.)

When We Know the Biopsy Results

We may know the results tonight, but this is a definitely a case where no news is good news.

There's a test that has to be run overnight. If one of the tests before that one is bad, then they can tell me my biopsy was dirty this evening. My hope is that Dr. Strickland does not appear at my door at all today.

If they're clean, then they can't confirm the clean result until the overnight test is run, too, so we don't want to know anything till at least tomorrow. Maybe they can report that at the morning rounds (about 8:30 am), but I doubt it. More likely, all the morning stuff has to happen, and I won't hear anything till afternoon.

July 28: The Big Day

Yesterday I was mostly in the haze of a neutropenic fever and sleepiness from the Benadryl that they give me when they give me blood. You can get an update on yesterday from my wife's blog.

A few days ago Dr. Strickland said, "Just four or five days now!"

My parents visiting
I said, "Uh ... till what?"

He looked at me like he was surprised I didn't know, and then I realized. "Until the biopsy?"

"Yes," he said, but I was worried I'd ruined what was supposed to be a hopeful moment. I found him in the hall a little later, and I said, "You know, it's very encouraging when your doctor is looking forward to the biopsy."

Until that conversation, it hadn't really dawned on me that the biopsy is the test of whether the chemo worked. It's a big day!

So today's that big day. At 1 pm, Dr. Lammers will come in and cut a small core out of my hip bone and draw some liquid marrow. (I had thought I wouldn't have any liquid marrow, but apparently I might.)

Jerry and Prayer

Jerry's biopsy did not come back clean, and now they've started on a new regimen today. He's got an abscessed tooth that they're treating with antibiotics and pain medication, so he needs to complete his chemo so they can work on that tooth (and several others). It's impossible to do even dental surgery on a patient with no immune system.

His son Jeremy was there this morning. Jeremy's very polite, probably in his 20's, and he's got an intelligent, together look about him. You could see the pained look on his face.

My dad reads to my daughter the same way I do
Jerry's a real talker--his son nods and adds information as needed--and he started with incredible disappointment (boy, can I relate!), but as he talked he seemed less and less bothered, until at the end he even seemed pretty hopeful. Dr. Strickland had told him, "That's why you're here. We specialize in the second round."

Apparently, about 50% of the biopsies are clean after the first round. Someone told Jerry that the 2nd biopsy is clean about 40% of the time.

I said, "What do they do if the second one is dirty, too?"

"They wouldn't tell me," Jerry replied.


Please pray for Jerry that this second round will work for him. When you have to continue the chemo, it means that for another 7-10 days--or perhaps more--no damage to your body will heal. Every small malady is cumulative. No surgery is possible for any problem. It's really rough.

Really, please pray for him. There are a lot of you praying for me. I'm assuming that by now, my biopsy is a foregone conclusion, clean or dirty. Because so much prayer's been offered on my behalf, God's already mapped a path for me.

Jerry doesn't have the same support.

Hair and Biopsies

Jerry told me that one of the nurses who'd been here since '94 told him that she was hoping the best, but that she knew before he went for his biopsy that it wouldn't be clear. She said it was because all his hair hadn't fallen out.

He has a standard male balding pattern, starting from the back of his head, which is obviously new because the skin's so white compared to the rest of his body. The hair on top is very, very thin. I, on the other hand, have lost no hair at all.

Jerry claims the nurses agree that you can tell how the chemo's working by how much hair you lose.

That doesn't make much sense to me, but since I haven't lost a single strand, I'd better hope that doesn't matter. It seems a better indication of effectiveness that the chemotherapy shrank to nothing the two larger tumors on my back, the incipient one on my right clavicle, and the one growing in my upper lip.

Large family means lots of visitors!
It's actually odd that I haven't lost any hair, though. One of my chemotherapies has hair loss as its most common side effect: "Hair loss (in 20%-70% of patients) may be partial or complete hair loss."

Doesn't 20% to 70% seem like an awful wide gap? They couldn't narrow it down better than that?

But I have another one that his this listed as a side effect: "Hair loss on the scalp or elsewhere on the body (called alopecia). Most patients do lose some or all of their hair during their treatment. But your hair will grow back after treatment is completed."

So let's hope the tie between hair loss and a clean biopsy is nonsense.

Hanging out in the family room back when I felt great every day
Actually, none of this really applies to me, anyway. This is a path God's got me walking. I'd hate to be counting on odds and hoping for the best. I would worry myself literally half to death.

Please pray for Jerry. He has a brother with a 6/6 match for a bone marrow transplant, which is the best situation you can hope for. It would be awful if he didn't make it to the transplant!

Food, Fevers, and Weight Loss

Note on the food I mentioned day before yesterday. Yesterday the meals came exactly as ordered. But I didn't even look at the dinner tray. I just asked my wife to grab any juice on it and send it away. I guess they agree with "starve a fever, feed a cold" here because no one tried to force me to eat, which was wonderful.

When I walked this morning, my pants were falling down. I told one of the nurses, "Neutropenic fevers make for a great diet plan." She said, "Oh, yeah. Chemo is great for the figure."

Please pray for Jerry!

Tuesday, July 26, 2011

July 26 Update

Don't count on anything from me the next couple days.

The idea behind my particular chemo, and the very similar Acute Myeloid Leukemia chemotherapy, is that they dump chemicals into my bloodstream for 8 days. It goes through a "PICC line" which runs some 44 inches into a large vein in my upper arm and ends in the vena cava, the largest vein in the body, which sends blood to the lungs for oxygen.

The "medicines," which are really carefully targeted poisons, then sit in my body, continuing to work for 4 to 10 days. I hit the peak of blood system destruction at day 14.

I'm on day 12. My "hematocrit" is at 26%. Here in Hematology they give blood when it hits 25%. Yours is probably 45%. My white blood cell count is 0.3, while normal is somewhere around 10 to 14.

Anyway, I'm tired from lack of blood--and from the intense pain I had for a couple days--and I have hemorrhoids and mouth sores that can't heal because I have no immune system. Fortunately, we've found a regular treatment for the hemorrhoids that make them bearable, but still, there's very little time during the day that I want to sit up, or even really stand.

I hear at day 16, I may start bouncing back a bit. Until then, though the exhaustion and 'rhoids make it difficult to sit and blog.

I'm not complaining. I am making valid excuses. If you don't hear from me, it's not because I've died or am bad off. I may just be resting and comfortable.

In two days, they do my bone marrow biopsy, and they'll see if it's "clean"--no leukemia cells.

"Clean" means there's no more chemotherapy for now, just waiting around for my bone marrow and blood to rebuild itself.

I did get up and visit Jerry today. He got his biopsy at 2 pm this afternoon. We won't know how that goes until tomorrow afternoon. I try to visit him every day because he's not allowed in the hallway without an escort. Apparently, on his day 12 he passed out while walking and vomited all over the floor. That was not what the doctors were hoping for, so now he needs an escort to walk.

My Nutrition Story

Okay, I'm going to tell this story. Unfortunately, the doctors or nurses may read this, too, and tell me I should have complained already. It hasn't been a big deal because I have plenty of my own food, and with the tongue sores I have to eat REALLY slow, anyway, which reduces the amount I can eat.

They're always sending people in to ask about the various services here, including the nurses and the cleaning guy. Of course, I give all rave reviews because I've never been treated so well in my life.

When the nutrition people asked, though, I had to tell them, "I'm not from the South. There's almost nothing on your menu I'm willing to eat."

So about 3 days ago, they said, "Just write in whatever you want. If it's something they make, they'll send it to you at any meal."

That was awesome, so I wrote in several things that I made sure could be obtained.

At breakfast the omelette came. I thought, small as that omelette is, this is nice. On the other hand, the cream of wheat I'd ordered didn't come. No problem, oversight.

At lunch, they replaced the rice they'd promised me with mashed potatoes. I don't know how many orders of mashed potatoes they've sent to me. Same with dinner.

Ok, that wasn't too bad.

The next day the omelette didn't come, either. Neither did anything else I'd special ordered, not even the chicken noodle soup that had come the day before.

So I tried again when I turned in a menu yesterday.

For this morning I got a waffle and syrup, bacon, and some sugary stuff I wouldn't dare eat.

Then a nutrition person came by and talked to me again. She tried to talk me into canned peaches, ice cream, and a peanut butter and jelly sandwich ... on white bread. I told her I didn't eat white bread, I don't want sugar, and I don't eat potatoes, is there any way they could send rice and chicken soup. Then I told her I would eat a peanut butter and jelly sandwich if they sent it on wheat bread.

For lunch, I got a peanut butter and jelly sandwich on wheat bread, chicken soup, and mashed potatoes. That's pretty much what I was promised; still no rice, though.

At dinner, I got turkey and gravy, spiced peas--even though my menu is marked for a bland diet--strawberry shortcake, and jello.


I ate about half of the turkey and gravy. I don't think I'm in danger of getting too much fat the way I'm eating right now.

It's not really a problem for me. I had yogurt (pasteurized, which is required), cooked packaged ham, and packaged (pasteurized?) cheese. It took me about 15 to 20 minutes to work my way through the ham and cheese even without any bread.

You should give thanks every day for saliva. I replace mine with water. I also have to swish food from between my left cheek and teeth because my tongue can't go there. Makes me marvel at the human body. There are so many processes going on that we don't think about, sometimes even right under our nose. (Ok, that sad pun was intended.)

Patrick Beard

I got interrupted as I was typing the above story by a visit Patrick and Lana Beard and their daughter Lauren. Patrick is among the men I respect most in the world. He is such a delight, and his spirituality is the real, practically-bringing-heaven-on-earth kind.

I've met a couple other people from the church there in Jackson, which I think is called Christ Community Church. I never dreamed the first time I visited that they would be doing a liturgy.

Are liturgies good?

Are shovels good? Depends on what they're being used for.

I don't know anyone else there the way that I know Patrick, though I've heard similarly good things about a couple others. What I know is that I watched the interaction between him and a brother from CCC while they were in Ethiopia together (and me with them for one week), and there was something unique and special about that fellowship. I will never forget that week, which accounts for a lot of the praise I have for Patrick.

They brought their daughter Lauren who was getting an MRI earlier in the day here at Vanderbilt. She's a handicapped child that the Beards have given thanks for and who has been a blessing to everyone around her.

People commend me for how I'm handling this leukemia and chemotherapy, but every day I meet people who are doing far more. I'm just following in their footsteps, backed up by a massive amount of prayer.

Their ministry in Ethiopia is called Indigenous Outreach International. You will never regret giving to it, but I'll let their site tell you about the things they're doing over there. He got me caught up, which as usual was a great story. He has a book called Slowly by Slowly which you can get at that site, too. Patrick is a great story teller, and reading that book will give you an idea that Lana, whom I don't know very well, is as tough as Patrick.


The doctors told me that they want to keep their eyes out for fever and catch it as soon as it starts. So from yesterday to today, when my temperature climbed 0.2 degrees each time they checked it, from 97.8, where it's usually been, to 98.8, I started to worry. I called in the nurse and asked about it.

Basically she calmed me down and told me pretty much everyone runs a low-grade fever during chemo. They just want to catch it early, and 100.4 is the trigger temp.

That settled me, and the next temperature reading, earlier today, was 99.7.


I told God, "God, I don't know what to do. I could text the prayer warriors at RCV, and they get results. But should I? Am I supposed to go through a fever? Maybe there's no need to pray. I'm confused."

I think I was on a pain pill, which contributed to the confusion.

Then I checked my temperature myself. It was 99.3. I laid down for a while, having pain pill dreams, which are half-asleep dreams, not deep-sleep dreams.

Around dinner time, they checked again: 99.1.

They just checked after the Beards left: 98.6.

Whoo, whoo.

Of course, the care partner told me, "You're shivering, so you'll probably get a fever tonight." I told her, "I shivered more yesterday, and I didn't get a fever." The RN shrugged, as if to say, "It's hard to predict anything," which is probably the most accurate thing you can say in the chemo ward. Fighting a chemotherapy cancer battle involves staying on your toes, reacting quickly, sometimes guessing, and it's good to have a great doctor like the ones I have. You can pray for Dr. Strickland, Dr. Greer, and Dr. Halliday; they're the "on your toes on the front line" team. Very good at what they do.

Well, I'm pretty sure my sister, my brother Dave, my Aunt Flo, and my sister-in-law Carrie will read this whole thing, as will my parents, but probably not my children. If you're not one of those, and you read the whole thing, then, wow, you're really patient. Remind me to tell you stories sometime; you're a great audience!

Monday, July 25, 2011

July 25: Day 11

I'm on oxycodon as I write this, so if I write anything really weird, be a little more forgiving than usual with me today.

I sure wish my news didn't involve hemorrhoids. I'm not even up to date on Jerry, who's probably getting his biopsy today, because there was just enough pain to tire me and knock me out. I slept most of the morning, despite a good night's sleep.

I'm more run down today, but I got up early and walked a mile anyway (around and around the square hallway).

I don't know if that was a good idea, considering the hemorrhoids.

If you're grossed out by bodily functions, you might want to exit here or skip a few paragraphs because there's some good stuff down below.

Basically, having a bowel movement is an event, and there's been a couple times that I've walked out of the bathroom shaking and with sweat on my forehead from the pain. Worse, because they have to make sure my stool's soft, I can end up going several times a day because of medication they're giving me.

They've given me several different things to deal with my "issues," all but one of which provides some help.

What they tell me is that my 'rhoids qualify for surgical removal, but they can't do that. No surgery on immuno-compromised patients. We have to remember that this is the route to saving my life.

I've found one treatment that is very helpful, and I finally got it prescribed today. But en route to actually receiving the treatment, I hit a pain threshold I couldn't bear. I called the nurse, and I asked her to please have a doctor "take a look."

I think it was not just the pain. I think there was a little bit of not knowing exactly what was happening to cause the pain. I assure you, though, that it takes an intense pain level to ask a doctor to look at my hemorrhoids.

So when the doctor was able to make sure nothing was pinched, perforated, and that something hadn't burst open down there, I felt somewhat better.

As I said, I'm treated now, and it's better, but they also gave me an oxycodon, which is a pretty powerful pain pill often prescribed for toothaches.

So here I am, buzzing on oxycodon.

Learning Always

As a Christian, I'm called to be a teacher. But if you want to be a good teacher, you have to be first and foremost a learner.

Bad things don't happen to me. "Things" happen to me, neither good nor bad, and God works them together for good because I love God, even if rather poorly, and he has called me according to his purpose.

I told my wife and another friend that I felt like a seal in the mouth of an orca. (Hmm. Another good word Blogger doesn't recognize.) Have you even seen the way an orca plays with a seal before it eats it. Sometimes the killer whale will beat the seal so thoroughly, knocking it in the air with its tale, that it rips the skin completely off of it.

This morning the pain was so bad, and I felt so helpless. I tried to turn my eyes to God, but he seemed so far away. Somehow. I really felt pretty peaceful, anyway, like I was just supposed to suffer.

Really, it didn't last very long—a few minutes, probably—before the pain started to dissipate.

So what to learn? Does God need to divest me of more of my need to be in control?

Maybe, but he can take care of that. He really doesn't need my help for that.

Part of the pain issue was the fear issue. I didn't know when the pain would end or how long it would last. It was in a very scary part of my anatomy, and with the pain so great, the thought, "Am I dying," has to run through your mind.

Don't you worry about me. I'm in God's hands, and the people imprisoning me are doing so to save my life, to take care of me, and they're doing their job with astounding care and kindness.

Here's some people you can worry about ...

Human Trafficking

A lady gave a flyer to my wife about human trafficking the other day.

Do you know that young girls get kidnapped and sold into prostitution or are forced to perform on video? Right here in Tennessee?

Those girls experience even more frightening pain, and they are the captives of people who are at the furthest remove from kind. has information no how you can help to stop human trafficking.

Unfortunately, we have to work at the prevention level. Stopping what's already happened is very, very difficult. Organizations like Be the Jam are working at education so the public becomes more aware and sex trafficking (and other kinds of human trafficking) becomes less likely to happen.

There's always someone suffering worse than you.

Living a Life Worth Living

Nothing will kill dreams like fear. Imagine finishing your life knowing you did the things that you wanted to do, not just whatever was convenient at the moment.

I'm all for adventure and fun. That's part of what makes life worth living, and in our exuberance for life we make other's lives just that much more worth living.

But mixed in with the adventure and fun needs to be a choice to make a difference.

The Power To Do What You Already Wish You Did

I don't believe in preaching Jesus Christ for the sake of brownie points in heaven. I think getting people to ask Jesus in their heart can be a complete waste of time and even a harmful block to the things that The Truth, the eternal Word of God, which is who Jesus is, wants to do in their lives.

The apostle Paul argued that the human problem is that we don't have the ability to do what we really want to do, what we know is right. Instead, we are moved by sin to live in our bodily desires, in whatever makes us feel good at the moment.

Jesus' offer, if you will become his disciple, is to put the Spirit of God inside of you so that you have the power to overcome those bodily desires and do the things that will make you glad you lived the way you did when you die.

And better yet--something American Christianity has often forgotten--he offers to put you in a family of people who feel the same way, have the same Spirit, and are focused on the same purpose. "Church" is not a building, and it's not a meeting. It's the family of God, really acting like a family, and there is nothing like the power that comes out of that reality.

Sunday, July 24, 2011

July 24: News and Prayer Answers

I visited with Jerry a bit yesterday. His brother was there, and his brother is a 6/6 match for him for marrow donation. Awesome. He's set for the transplant.

Doc Halliday
That's not due for months, though. Next step is for him to get a clear marrow biopsy. His is probably going to happen Sunday or Monday. Please pray for him. He's also suffering a bit: cold, tired, nauseous, unable to eat. He's lost 17 pounds. The doctors say if he hits 25 pounds, they're going to feed him intravenously.

I've mentioned two brothers I met whose dad was due for a biopsy. Apparently, the dad got his biopsy day before yesterday, was told it was clear yesterday, and got to go home immediately to recover. He didn't like staying at the hospital, and they've apparently got more flexibility with that than I imagined.

Anyway, that was all exciting in the sense of good news, and accurate prayers. I told Jerry that I was going to pray--and ask y'all to pray--for all clear biopsies while I'm on the floor. I don't know that I have faith for that, but I figured I'd just have a lot of fellowship with God and maybe the presence of God would just work miracles. Things work that way pretty often.

Then when I leave someone else will need to take over.

A "clear" biopsy means that after chemo all the cells in the bone marrow have been destroyed. There are no cells, good or bad. At that point, the patient's blood and immune system will usually rebuild itself without any leukemic cells. If there are still bad cells left, then it's a "dirty" biopsy, and second round of chemo must be started.

My Report

Dr. Strickland examining lesions
I have less energy, breathe harder, and got my first mouth sore--very common side effect--which is on my tongue and makes eating painful. All of that is very easy to handle. The hemorrhoids continue, maybe slightly better than yesterday, and that is very difficult to handle. If I lay in bed on my side, it mostly doesn't hurt. Walking's a little painful, not bad, but trips to the bathroom are ... well, I suppose they're not as bad as a broken femur or giving birth, but I would be willing to say 8 out of 10.

That's a Brian Regan joke—short version or long version—though I'm not joking about it being extremely painful. I had a fingernail plucked out once when my finger was caught in a sprocket. The plucked fingernail was worse pain for sure.

A Couple Funny Burping Stories

My sister left me a comment after I said that I've always had trouble burping. She said she thought her contest-winning burping skills were because she's a Pavao.

Apparently not, but ...

Back when I was newly married, my wife and I were helping with a youth group at a church. She heard about a game in which the players race to eat a banana and then drink a 7-Up™.

Apparently, I wasn't insightful enough to see the point of such a game. I raced with the youth, ate my banana, and drank the whole 7-Up as fast as I could. I didn't win, but I did get the same results everyone else got--a bloated belly full of gas as the soda reacted with the banana.

Kids were burping everywhere, but not me.

I staggered to the kitchen in awful pain. My belly, which was flat back then, was bloated and tight as a basketball to the touch. I literally was wondering if I was going to burst my stomach and die.

Finally, I decided I had to do something because no burp was coming. The pain was worth a do or die solution. I took both fists and drove them into my belly as hard as I could. Fortunately, I didn't explode. I got a really massive burp out of it, though, and then, with the pressure off, I was able to get 2 or 3 more.

I came out of the kitchen white-faced, in a cold sweat, and told my wife what had happened.

The other story is more absent-mindedness.

The nurses have really liked my Auburn, California scenery pictures

My wife and I were at a Burger King, again back when I was in my 20's. On the way out I dumped my tray in the garbage can. Because of the where the garbage can was, this meant that I was standing between the counter and the very large, very full Burger King dining room, facing all the tables over the garbage can.

I must have had soda with the meal, and I must have had my mind in some other world, because I burped, loud and unrestrained, as I was dumping my tray. I think the turn of 40 or 50 heads probably roused me from my reverie, and I realized what I had just done.

Instantly, I dropped into a squat, hiding behind the garbage can. (Really.)

I waited just a moment, then got up and strode to the door at what was almost a run, never looking at anyone in the place.

Okay, well, that was real important. I hope you enjoyed that.

Saturday, July 23, 2011

Messengers from Heaven

At the very foundation of this whole journey for me is that all things work together for good to them that love God and are called according to his purpose.

I'm having to remind myself of that as some of the side effects of chemo begin to set in.

Elephant ear and lantana at Vanderbilt
But that's not the real difficulty. The real difficulty is thinking of others in much worse situations than mine. What about situations where disasters are nothing but a miserable loss of loved ones, possessions, and comfort?

There are people who have gone through such things and found the glory of God in it. The famous hymn, "It Is Well," was written by a Christian man who had lost his wife and two daughters in a shipwreck.

I thought of it today when my wife was reading me an article by a man who had lost his wife to cancer in a long, 2-year battle. What good was there in such suffering? Did it simply not matter because he wasn't "called according to God's purpose"?

I don't believe that. I believe that God makes the same offers, the same open doors, to non-Christians as to Christians. He is not partial, and he causes both sun to shine and rain to fall on the just and unjust. We are all given opportunity to lay hold of his grace and overcome.

The man in the article overcame in an unusual way. It's worth reading about.

July 23: Feeling Like a Leukemia Patient

Today, I'm feeling at least a little like a leukemia patient in chemotherapy.

A quick request, too. If you like any of my blog posts, hit the "+1" button at the bottom. It helps with Google searches, and I'd love for that original "Yippee! I Have Leukemia!" post (see tab above) to be easily found in Google. So, if that did something for you, click the "+1" on that post, not this one.

Also, my wife is blogging from her perspective at Lorie on Life!. The post I just linked is about the perks of leukemia. Yeah, there are some.

Thank you!

First, the Good News

For a lot of you who don't know me real well, you might want to only read this section. The rest might not be interesting.

First, a friend who's in Kenya right now sent me a link to a charming, heartwarming, and inspiring video about a 9-year-old Kenyan chemotherapy patient. It's six minutes long, well worth the time to make your whole day warmer.

Second, Al, whom I mentioned in this blog two or three days ago, got his marrow biopsy back. It's clear. That's a really big step on this floor. It means his first round of chemo will be done, his blood should build back up over the next two weeks, and he'll be en route, probably without difficulties, to a transplant in the next few months. He already has a donor.

So that's an answer to prayer.

Prayer Requests

I'm thinking that father of the two sons from Kentucky I met will get his marrow biopsy back on Monday. He's not headed for transplant, but a clear biopsy will be just as important to seeing him in remission.

Finally, I ran into John again, and I got some more information from him. His wife has lymphoma, and chemo has put her in remission twice, once for four years and once for ten. So this is session three of six this time around. Obtaining remission means years of normal living for her, so please pray that happens and she handles the chemo well.

Okay, Now the Personal Stuff

Like I said, if you don't know me well, you might want to just go watch that girl's video (above). It's way better than hearing about misfiring bodily functions. I'm only discussing such things because I thought maybe some of you wanted to know what the experience of going through chemo is like, at least for me, in the modern world where they have pretty effective medicines for a lot of chemo side effects.

I am untethered finally! That's Nurse Susan releasing me yesterday.
I had a rough night last night. Pretty rough afternoon before that, too. I'll spare you any hemorrhoid stories from yesterday. Last night, it was just heartburn painful enough that I couldn't sleep.

The nurse gave me some medication, but when that didn't help, she said the next step was to make sure my heart was okay. I pretty much begged her not to, assured her that I was certain it was gastrointestinal, and told her just forget about it, I'd be fine.

Amazingly, it worked. They were okay with giving me Tums™. I got the impression that the doctor wanted some reassurance, but they'd just done an EKG around dinner time yesterday.

I hope that's okay to report on a blog. I don't want to get anyone in trouble. The staff, across the board, is incredible, and I completely trust them. They have some very lofty goals for their staff posted on a big bulletin board in the hallway, and I'll testify that they're accomplishing them. They are not just professional and skilled, but they are a team always giving off a vibrant and positive atmosphere.

Okay, enough praise.

As it turns out walking around and burping a bit took care of the heartburn. I've always had trouble burping, weird as that may sound, and so moving around helps.

Dr. Halliday checked on me this morning, and I told him that apparently I needed to be put up on someone's shoulder and patted on the back. He said, "We all need that every now and then."

That cracked me up.

Quick Note on My Blood

Oh, I'm also dragging today. My red blood cell and hemoglobin counts are up. I don't know why, but I'm going to ask the doctors.

Nonetheless, I feel a lot more like I did last week. Walking a mile meant making my hands tingle and my forearms and lower legs ached slightly like I'd been going too far. I was breathing harder than yesterday, and overall it was like a long hike rather than the brisk walk it has been.

I even forewent the bicycle, both for fatigue and for, uh, not aggravating the hemorrhoids. (Should I not be mentioning those? For those of you who have had them, you know they can be a pretty significant part of your life.)

I'm wondering if the red blood cells I make aren't as good as the red blood cells they give me from other people. My blood cell counts are good as they were two or three days ago, but the energy that blood can produce doesn't compare.

Well, more things to ask the doctors.

Friday, July 22, 2011

July 22: Prayer Requests and Great, Great Morning

Maybe this can be a prayer blog:

I met a man named John this morning. His wife is here for treatment for a non-Hodgkins lymphoma that is incurable. It's been put in remission before, and now she's going through a series of one week long chemotherapy sessions--seven total, I think--meant to put her back in remission.

They're over 65, I'd guess. I can't tell how much older. The first round of this chemo was so rough on her that she didn't want to do anymore. She wanted to just resign herself to whatever happened. Friends and her husband talked her through it, and this session's been better.

Please pray for them. Her name is Diane.

The difference between Leukemia and Lymphoma, by the way, (or one of them) is that Lymphoma malignancies tend to accumulate in the lymph system (or skin) and create tumors. In that sense, my leukemia was like a lymphoma because I had two tumors on my back, a third starting on my right clavicle, and a fourth growing in my upper lip!

Jerry (hope I got that right), whom I met four or five days ago, gets his bone marrow biopsy this coming week on Thursday. The father of the two brothers I met gets his tomorrow. What the doctors are hoping for in a bone marrow biopsy is that their marrow will be completely "hypocellular." They want no bad cells, no good cells, just a matrix (I guess). Then they let the person grow their own blood back, hopefully properly.

About 50% of patients have a clear biopsy. The rest have to go through another round of chemo, usually less intense, to try again.

I think that if that doesn't work, then they just try to treat the disease, which will be fatal eventually. I'm not sure I have that right, but since the leukemia survival rate for 5 years is still only a little over 50% overall—even including those with chronic, and thus slower-moving, leukemias—I'd say an inability to get a clear bone marrow is probably very close to a death sentence.

I was asking a nurse the other day about what they would do if my biopsy isn't clear, which will probably happen a week from Saturday. She was explaining what the next round would be, and then she slapped my arm and said, "But let's not talk about that." It was obviously a much more horrifying thought to her than to me.

It just doesn't horrify me. I'm not "dying" of leukemia. I'm walking with God on a course that he's mapped out for me. A clear biopsy is not better than a "dirty" one. Being on God's path is better.

So, My Great, Great Morning

I start the day by walking and riding a stationary bike, as you know, then hitting the family room to see who God sends in to talk to me. Today that was messed up because I got up a little later, plus I've been given a laxative in preparation for a chemo I'm getting today, so a couple necessary breaks slowed me down, too.

So today, God sent people to me while I walked and biked.

First, I saw Anna, the warrior nurse, who I have named Kamau (Ka-MAH-oo), which means "quiet warrior." She asked for the spelling of the name, and she told me she's putting it on her name tag.

Now that was really cool.

When I got on the bike later, I saw just about everyone I've already met. They stopped by, and I got updates on all their conditions. I also met John, who I'd seen walking with his wife (and with an IV pole that had very noisy wheels) yesterday.

Before them, in fact, Doc Halliday came in, and he started smiling from way down the hall, seeing me on the bike with my coffee in my hand. He's told me he's never found a patient on the exercise bike for morning rounds before. I think he gets a kick out of it.

He walked up and said, "Let me guess. You're still feeling great."

It's y'all's prayers, you know. Thank you so much!!!

Then he did his checkup while I was on the bike. That was fun.

In fact, I had so much attention that I did 4.5 miles on the bike rather than 3, and I barely noticed them.

Then my "care partner," who I know know is a non-nurse who needs only a few weeks' training, but who is also usually a nursing student, came in to check my vitals ... four times. I was in the bathroom (laxatives), showering, getting visited by the doctors. When she found me, she said, "You are a busy man. I feel like I have to take a number and get in line."

I told her that was terrible, that she had the most important job and the least priority. She agreed.

This is way too much fun.

Oh, Wait! One More Guy!

And then there's the cleaning guy who comes in every morning. I told him this morning that his bright smile is one of the best parts of each day.

I recognized his type immediately, the first day, because I've had several friends just like him. Young, black, smiles all the time, and he uses certain Christian buzzwords. In his case, it's "blessings."

Sorry if there's anything that sounds racist in that, but since we non-blacks need to learn something from those young guys--and there's some older black Christians that need to remember their younger, more humble and joyous days--I need to point out who they are so you can learn from them. I certainly am.

Usually, they're a lot less quiet than this guy, but otherwise he's got it all. Joyous, infectious smile. Complete openness that makes you feel like you could be his best friend today without any work. Simple, uncomplicated faith in Christ that doesn't need to question or explain anything, just do it.

Of such is the kingdom of heaven. Oh, God, please never let my gift of teaching blot out that kind of simple faith. Please let me always have it because it's the only thing that matters on earth.

By the way, that reminds me that I wrote a "Rest of the Old, Old Story" blog post on that very subject last night.

Thursday, July 21, 2011

July 21: A Bit More on My Leukemia

If you're not interested in medical details, the post I just put up about people will be much more interesting.

This one's short, though!

I asked Dr. Strickland—the tall, handsome doctor who's not to be confused with Dr. Lemmer, his equally tall but slightly less handsome colleague—to explain enough about what's going wrong in my system for me to use it as an analogy for things I want to write about.

He was a little confused by that, but with very little guidance he got directly to what I was looking for.

The reason my leukemia is unusual is because my cells are going bad so early in the process that they can't tell what they are yet. Normally, you find bad lymphocytes (most common) or some other bad white blood cell. What's happened is that before the lymphocyte is fully developed, it becomes abnormal, doesn't finish developing, and loses its programming to die. Your cells are constantly being replaced, so you want the old ones to die. Cancer is what happens to you when cells decide they need to be immortal and proliferate.

Hmm, that's an analogy in itself.

Anyway, my cells are going bad so early that they're barely out of the stem cell stage. So they see the abnormal cells, but they can't tell what they were supposed to become. That is what makes classification so difficult, and that is what has made treatment difficult. What cells do they go after?

After Dr. Strickland left, I told Hannah, "Finding an analogy for that one is difficult."

It wasn't for her. She gave me one immediately, which opened up my mind to numerous avenues.


Sorry, wait for the book. It's going to be called The Healthy Body. I've already started on Thrilled to Death.

July 21: Names and People

First, note that I updated the bone marrow donation post I did. I'll explain why in a moment.

Second, good grief! I can't believe I'm not remembering to get pictures of these people! At least the nurses!

Yesterday and today I have a very talkative--and like everyone else here, very friendly and pleasant--nurse named Martie. Martie, I'm told, is very smart, and she's been around a while as an oncology nurse, though she's much younger than me, young enough to have a 7-year-old.

(She threw up every day during the entire pregnancy! No first trimester "morning" sickness for her. All day nausea for 9 months, and she even threw up an hour before delivery. Yikes! She said she kept telling herself, "It's worth it. Keep your eyes on the prize." Is she awesome or what?)

She certainly appears to be both smart and experienced.

She explained the whole marrow donation process. Apparently, she's been the nurse for about 1000 transplant patients.

Mmm! Hospital food! That's an "omelette."
Don't get me wrong, though, I've never been treated so well in my life, despite that the food usually qualifies as hospital food.
Blogger's spell checker, by the way, doesn't recognize "omelette" either!

Anyway, what she told me is that what I went through for a bone marrow biopsy was just one hole. For a transplant, they will make 50 or more on each side (wow). She explained that the person would be asleep, so it's not traumatic, and that they take about a liter of liquid marrow.

Afterwards, the donor will feel like he or she has been kicked by a mule, but the soreness would go away in about a week.

It's a lot easier on the donor if they're just given a growth hormone for up to 5 days, which causes proliferating stem cells from the marrow to enter the blood stream. Then they just take blood and harvest the stem cells right there.

Either way, they just inject the marrow or the stem cells into the recipient, and they go right to work replacing all the marrow.

Pretty amazing.

I'll spare you the explanation of how they decide between marrow and stem cell transplant. I'd probably get it wrong, anyway.

The Warrior Nurse

I already wrote about Anna, whom I referred to as the "warrior nurse." Remembering that George at our sister church in Nakuru, Kenya likes to name the folks we send over to visit and serve them, I decided to look up the Swahili word for warrior.

I found a great one, and it's even a Kenyan Swahili name.

It's Kamau, pronounced Kah-MAH-oo, and it means "quiet warrior."

It was perfect.

So I told her about it, and she asked, "Is that my new name?" I told her, "Yes, and that's what I'm calling you from now on."

She said she liked it, but everyone is nice on this floor, so I don't have any way of knowing if she meant that.


Every morning after I exercise, I go in the family room and wait to meet a patient. God has sent someone in every morning. Today, I went in before the bike ride because the night nurse—whose name ends in an -ee sound, causing me to forget her name because all my nurses lately have names ending in -ee—wanted to change the bandage on my PICC line so that Martie wouldn't have to.

Anyway, it was Al who came in this morning. He seems somewhat young for a leukemia patient, too, though he's older than me. He's got something called Myelodysplasia. (There you go; pronounce that one!) He explained that means that his red blood cells come out wrong.

He was diagnosed in January, and ever since he's been going to the hospital for one week of minor chemo, followed by 3 weeks of recovery. He said he got Benadryl every day during the treatments, so he was always tired. Over the next week, he would recover. Then he would get two pretty energetic weeks, then go back in.

Now he's been in 2 weeks, so he's a week ahead of me.

The nice part about that is that a week ahead is where my "low" is supposed to be, where I'll have the least energy. Al didn't not seem sapped. He seemed great.

I didn't learn as much about him as I did about others because he's a good listener and apparently pretty good at conversation. So I did more talking than I've done other mornings.

He gets his bone marrow biopsy tomorrow to see how things are going. He is headed for a transplant for certain, too, like me. He has two brothers and a sister, like me, but his siblings weren't matches, not even partial enough to be used. But they found a donor in the National Marrow Donor Program, so he's set as long as the chemo puts him in remission.

Please pray that goes well.

When he was leaving, he said something that sounded almost non-positive. It wasn't negative, but anything non-positive on this floor stands out. So I told him, "You're in good hands here."

I was referring to the doctors, but he pointed to heaven and said, "I'm in the best hands of all."

Then he smiled a smile that made it clear there was nothing non-positive about him.

He was probably tired from the 14-day low—and 6 months of being on and off chemo and Benadryl—and was simply so positive that I forgot how fatigued he had to be.

Wednesday, July 20, 2011

July 20: The Schedule

Sorry for posting more than once per day. I have the time to do so, and it seems like there's so much to talk about.

I just got back from the family room. After I walk a mile and bike three (on the exercise bike, not outside--can you imagine me with the IV pole biking through traffic?), I like to go to the family room, where every day I've managed to meet one different patient.

Photo by Nichole Park
Today it was Jerry. Like me, he's young for a leukemia patient. Unlike me, he's physically beat up because he was a coal miner. He's from the Kingsport, TN area, but he actually lives in Virginia. Kingsport is right on the border. If you don't know, if you hear coal miner, then Virginia is one of the first states that come to mind.

Taken on my iPhone in Sevierville, TN
Jerry's got AML. Nonetheless, as with me, the docs tell him the goal is bone marrow transplant.

He told me his whole story from the beginning of the problems to his diagnosis on June 28, just four days after mine. He got in the hospital a couple days before me, and he's two days ahead on his chemo. He's got heart problems, so he just barely qualified to do this regimen. He tells me it's the most toxic chemo given for cancer.

I didn't know that.

He told me several other things, and I told him, "Wow. You asked a lot more questions than I did." He told me he was an arsenal of questions.

He also said the toughest part was boredom. I told him I'd send him some of my visitors. If you come to visit me, don't let me forget he's in room 7. He's a real talker, so even if you can't carry conversations, don't worry ... you won't have to.

I try to start my day around 5:30. Because I started it at 5:20 today, I found out the hall lights come on at about 5:29.

My walking track
The hall is a big square, and the patients are encouraged to walk laps. They accuse me of running my laps rather than walking them, but I am legitimately walking. (Without doing my hip-swinging speed walk, which will make Janelle very happy.) This morning I accidentally clipped a door jamb after going around a nurse, and she hollered after me, "You know, we do give traffic tickets around here."

I walk 30 laps, which is just over a mile (26 laps to a mile). They have a chart on the wall which shows distances to various Nashville attractions. So by walking the laps, you can pretend to have reached these attractions by foot.
Jeremiah Briggs, used with permission

That doesn't do much for me.

Before I do the laps, I get coffee started in the family room. So when I'm done, it's ready, and I pour myself a small cup and take it to the exercise bike. I do three miles on the exercise bike, with the coffee in my hand and my IV line thrown over my shoulder to keep it out of the way. Yesterday I tried to set a record for a mile and for two miles, but today was an easy day. I just enjoyed it.

I have no idea whether this exercise helps. I know that our muscles make extra mitochondria in the cells when we exercise, and I assume my body can still do that. But as far as cardiovascular, it seems like there's some blood changes involved, and I'm having to live off other people's blood.

Hmm. Who knows?

After the bike ride, there's an arm machine I get on, just for a couple minutes. No cardiovascular there, just a mild attempt to have some semblance of non-flabbiness in my upper body.

Then I heat a cup of tomato soup in the nutrition room and take it to the family room and hope to meet another patient.

Funny, the previous two days, I didn't meet a patient, but two brothers, one each day, who are taking care of their 74-year-old father. They are very different from one another, but not in voice or accent, so I knew immediately the second day that this was the brother mentioned by the brother I met the first day. (Wow. I hope you can decipher that one.)

Today it was Jerry. Three days ago it was Crystal, who has already gotten a stem cell transplant, just Friday night, and she's doing great.

It makes for a great morning.

I did make a stop this morning before going to the family room. I stopped at the nurse's station to suggest a new business.

I don't know if you know this, but one of the difficulties of ultra-marathon running is hydration and electrolytes. There are many powdered drinks and gels that are made to help an ultra runner maintain proper electrolyte balance while he's running. In fact, a number of ultra runners use Pedia-lyte, which is a drink meant to help babies maintain electrolyte balance when they have diarrhea.

The reason that many use Pedia-lyte is because the other drinks can be hard to digest when you've already run 20, 30, or 40 miles.

I'm no ultra runner (though I do have one small ultra under my belt from 2006). At the moment, I'm no runner at all. But I recognize the potential here for this machine I'm on. It steadily maintains both my hydration and my electrolytes without my drinking or eating anything!

Imagine if you made a backpack version for ultra runners! They already carry small backpacks with their hydration drinks in them. (Camelbak is the brand name that's become synonymous with those "hydration packs.") The pump is plenty small enough to be almost unnoticeable when added to all that water weight.

And as far as getting a PICC line installed to make use of it? Those ultra runners are out of their minds. For the sake of performance, most of them would gladly pay to get a PICC line installed permanently.

And what a great publicity fundraiser for cancer research!

Turn Your Eyes Upon Jesus

Yesterday I finally got a taste of worry.

It wasn't a bad kind of worry. It was just an honest, responsible kind of worry. "I need to be realistic. I need to make sure my affairs are in order."

Photos by Ashelie Hartle
I was even thinking positively. It's people with a good attitude who beat leukemia, and everyone tells me I've got as good an attitude as they've ever seen. I just need to maintain that attitude.

But a tinge of doubt came in. I was no longer sure I could "maintain that attitude."

I turned to good, religious thoughts. "God's in control. It's faith that matters, not good attitude. A good attitude is the product of faith."

But I was no longer sure I could maintain faith, either. After all, doubt--no matter how small the amount--had already crept in.

To be honest, I was in that state for hours. I wasn't directly thinking all the thoughts I just wrote. Instead, I was maintaining a good attitude. I was being cheerful. I was talking with the nurse and trying to be as encouraging to her as possible. I was enjoying the day. I got 15 pages done on Thrilled to Death. I was enjoying the time with my wife as she came in and out from laundry, cleaning the trunk of the car, and other various errands. I was keeping up with others by Facebook between chapters of the book.

My attitude was very good; very positive.

But by evening, at least compared to previous days, I was tired, and worse, I was unhappy.

Turn your eyes upon Jesus
Look full in his wonderful face
And the things of earth will grow strangely dim
In the light of his glory and grace

A simple shift of attention.

No condemnation. No need for penance. My Father simply swooped me up in his arms, pulled me back to his bosom, and flooded me with grace.

Doubt? Doubt about what?

Doubt about walking with Jesus tomorrow? It's so good today. Why would that ever go away?

Doubt about dying? We're all going to physically die. Nothing to doubt there.

My job is to live in the presence of God. My job is to talk about what he's talking about. He's actually said something about my dying. He's said I'm not going to die, at least not from leukemia. So I say that as well.

But really, it doesn't matter.

Doubts that I can maintain a good attitude? I no longer care about a good attitude. My good attitude is, quite apparently, mostly useless and definitely fleeting. I want Christ's attitude. It's supernatural, powerful, and eternal.

I started to write a little excursus on hearing God a little above, but I thought it disrupted the flow and went better on my Rest of the Old, Old Story blog, so I put it there.

(Hmm. "Excursus" is another word blogger can't handle. It's correct, though.)

Finally, for the more practically minded, despite all I said above, I "set my affairs in order" as soon as I got a diagnosis. To this very moment, I believe it would have been irresponsible not to. That wasn't very hard because I'm part of the body of Christ--the visible body, not the wishful thinking body--and well taken care of.

Tuesday, July 19, 2011

July 19: The Plan

This is the 2nd blog of the morning, and I did one last night, too. The other one this morning was mostly on exercise and blood stats, so you can decide whether that's interesting to you.

Dr. Strickland gave me a confirmed plan today. If we find a match, the bone marrow transplant is the way to go.

The doc said the scab on the lesion, which is healing, looks like one of the body ports from the movie Matrix

They can actually do a bone marrow transplant from a patient's own marrow, removed while he/she is in remission, but because my leukemia is so rare, my marrow can't be trusted.

Without a transplant, if they put me in remission, will it last? There's no way to know because there's no scientific history for leukemia's like mine, but the real answer is, almost certainly not.

So, for all those wonderful people who have been offering prayer, you can pray something very simple. Pray I find a bone marrow donor!

Actually, I'm confident I will because I don't believe this is a disease. I believe this is a course. God has set me on it. I don't really need a marrow transplant. God could heal me through simple faith, or natural remedies might even work (though there's nothing convincing to go off on those yet). But I'm convinced that the course God has told me to walk includes a marrow transplant, and I can't do that without a donor, so he'll supply one.

This is what they once looked like

In fact, he'll surely specifically pick one.

But participation is God's gift to us, so I really appreciate your prayers. Sleeping when we should be praying (or even just watching) is something God discourages.

Thank you so much for all your love, prayers, and even positive thoughts!

July 19: Getting in Shape and Having Fun

I'm sure this can't keep up. Doc Halliday did warn me that a couple weeks from now is the rough time.

On the other hand, I'm back at 25% "hematocrit," which I still can't pronounce, but which I do know means I get blood again today. Nonetheless, I went ahead and set a new standard on the exercise bike and walked a mile and a half this morning. On the bike, it was 1 mile in 3:24 (after a warmup) and 2 miles in 7:14.

If that doesn't seem like very good times, keep in mind:
  1. I've never been very fast.
  2. I have approximately half the red blood cells I'm supposed to have.
  3. The bike's seat can't be adjusted, and I'm just about hitting myself in the chest with my knees.

For all the incredible medical equipment they have here at Vanderbilt, not one piece of exercise equipment--there are three--is in full working order. In fact, only the one bike I'm riding even has a working screen. The other bike works okay manually despite the fact that nothing electrical works on it, and the arm machine is only manual. It, too, is beat up, though. You can't read its instructions or adjustment knob. You can read its manual speed gauge. You just can't understand it because you can't read the instructions.

I don't know what's supposed to be happening here, but this is like some dream vacation. I work on blogs and YouTube videos. I talk with some of the most wonderful people I've ever met. I spend time with my wife.

I miss the kids, of course, but on the other hand it's only gone one day without them so far! Until yesterday, they were here every day.

I guess being tethered to the IV pole is an inconvenience. And the plastic wrap over my right arm in order to shower is a serious inconvenience, as is threading the IV's through my sleeve in order to change my shirt.

I am fixing that last problem by having modified shirts sent from home. They've been cut and velcroed so that they can be put on without having to thread IV lines.

The nurse saw me walking this morning, and she said, "You're not walking; that's running." I told her, "I'm just faking the leukemia. I needed a break from work, and I heard 11 North had really great service, so here I am."

Some Stats

White blood cell count is down under 1 this morning. That would be really, really bad if that wasn't the point. I think the goal is basically zero. It was 1.3 yesterday. I think 4-10 is normal.

Hemoglobin is 8.4 or something like that. It hasn't been dropping. That number has a lot to do with how much I can exercise, because that's the molecule that carries the oxygen in the red blood cells. Normal for a guy is over 14.

The two numbers the doctors watch are the hematocrit and the platelets. The hematocrit is the percentage of your blood that is red blood cells, and it should be about 45 or so. At 25% or lower, they give me blood to give me a boost. The platelets are supposed to be between 150 and 400. (Yeah, big gap.) Mine's something like 33, though it was only 31 yesterday, so I guess I can still make platelets!

Platelets are really important because they are what create clots to stop you from bleeding. Below 20 is really dangerous and can lead to spontaneous bleeding and make it impossible to stop bleeding if it starts. The hospital, working with bodies like they are car engines or something, can give me just platelets, too.

It's weird how much they know. I suppose it's even weirder just how much is left to find out. We live in complicated bodies in the midst of a complicated universe.

July 18: The Lasix Experience

What interesting thing is there to talk about today? Well, there's no doubt about the answer to that question.


No, I'm not misspelling Lasik. Nor am I talking about eye surgery.

Lasix is also known as furosemide. It is a "loop diuretic" that treats fluid retention.

Uh huh.

It is the scourge of the chemotherapy wing.

The doctors drip 3 quarts of water into my bloodstream to keep me hydrated. They drip another quart of water to deliver the chemotherapy I'm getting. That is an entire gallon a day in addition to whatever I drink during the day.

As a result, I do not sleep through the night. I don't need the nurses to wake me up for vital signs and pills. My bladder wakes me up regularly.

But even that's not enough.

There's danger of fluid retention, which is very dangerous and can throw off your electrolytes. So the doctors have us urinate into a measured container. They also have us keep track of the ounces of liquid we drink. At every shift change, they compare in vs. out to make sure that we're not retaining fluid.

I read in Runner's World that every year a marathoner dies, not from dehydration, but from drinking too much water. Usually, it's a small blond girl. She sweats out electrolytes for 3 or more hours, and she thinks that drinking a lot of water is a good idea. But the water dilutes the low electrolytes even further, leading to a condition called hyponatremia, or low sodium.

Dehydration is dangerous; it can slow a runner down and put him or her in the hospital. Hyponatremia won't just slow you down; it will kill you.

I should have figured out what I was in for the first day. The nurse said, "Make sure you keep good track of your urination. We tell everyone it's important, but some people don't take it seriously. Then it looks like they're retaining fluid, and they end up needing Lasix."

Then she added the ominous words, "You don't want to take that unnecessarily."

For me, there was nothing unnecessary. I checked in on Thursday, began chemo on Friday, and by today, Monday, I had gained 7 pounds. I was going to the bathroom a lot, but apparently not enough. This morning, the doctor pressed on my leg and said, "Hmm, looks like you're retaining fluid."

So there was my weight, my leg, and the numbers on my chart.

I needed Lasix.

No big deal.

The nurse came in with the syringe. "They ordered Lasix for you. Are you sure you kept good records?"

I said yes, but I was thinking. "What's the big deal? I've gained 7 pounds. The doctors think they can feel the fluid in my legs. The numbers on your charts must agree. This is correct. We don't have it wrong."

The nurse shrugged. "This may work really fast."

My "care partner," who checks my vital signs and makes sure I have everything I need, said, "Honey, I am so sorry."

Then she walked out.

The nurse walked out.

They had just woken me from a nap. I had to go anyway. I headed to the bathroom.

Then the Lasix kicked in.

In Mixed Martial Arts competitions, it is illegal to hit someone in the lower back. That is because there is the spine in the middle of the lower back, and hitting a man there could cripple him. On either side of the spine are the kidneys, and hitting a man there is like kicking him in the crotch. It's really painful.

Lasix kicked me in both kidneys at once.

I stopped in my tracks, 3 feet from the bathroom.

Then I realized I'd better not stop.

I set a one-trip record for my time here on that trip to the bathroom. 750 milliliters, or about 3 cups, in one trip.

Five minutes later, I added 575 ml.

Within 45 minutes, I had reached 2625 ml.

I put the amounts on Facebook. A couple of moms I know told me they got out their measuring cups so they could get a visual.

After an hour and a half it seemed to be over.

3100 milliliters. 6.5 pounds.

I was back to my admission weight ... in 90 minutes ...

Better not tell any anorexics about that drug.

Some Better News

I had really good talks with a number of people today. I told a couple of nurses about "The Leukemia Tapes" (3-minute or less Christian video teachings I'm putting on YouTube). They were very interested, A couple of them said they were looking at this blog.

That's really nice.

For the record, I want to say that the staff of 11 North could teach any customer service staff in any organization a thing or two about customer care. I have never been better taken care of and cared for in my entire life.

There is either a huge line of applicants for the positions on this floor or Vanderbilt has the greatest customer service training the world has ever known.

If you ever get a chance, you should get leukemia and come here for treatment.