Sunday, October 30, 2011

October 30 #2: Photos and Fall Beauty

Don't let this post hide the fact that I already wrote one earlier today.

My wife took this picture while she was walking yesterday
I went for a walk in the beautiful fall weather earlier today. No matter how weak I am, the doctors want me to try to fit in a walk or two each day. Yesterday, the weather was so beautiful that I walked outside for 15 minutes. Today I felt so much better that it took great strength of will not to try running. I'm definitely not supposed to run. Dr. Strickland told me to avoid running if my platelets were below 75. When we checked them two days ago, they were at 33. They should be going down, not up.

I've taken several pictures of trees like this even though I don't know what kind it is.
Normal is around 300, and anything under 150 is low. Platelets are what stop you from bleeding. Dr. Strickland said that it's not good for my joints to run when my platelets are low. I started thinking what it would be like to twist my ankle badly (or break it!) when my platelets are probably under 20.

That thought helped keep me honest.

Anyway, the walk yesterday and today in this incredible fall weather made me want to post pictures.

I know the secret of being a good photographer. Being a great one means learning a lot more secrets and having a talent that I probably don't have. But I do have two tips that will make anyone a good photographer, assuming you have even a decent camera:

  1. Don't stifle the natural awe that we humans have for beauty. Sometimes it doesn't seem cool to be awed by beauty. Don't let that happen to you. If it's beautiful, take a picture of it. (I'm not talking about people.)
  2. If you're not sure you captured what gave you awe, take the picture again ... and again ... and again ... and again ... and again ... and from every angle you can think of.

Thank God for the digital age, where multiple pictures are cheap, free even.

Nothing like hillsides in the fall in Tennessee

Another picture my wife took. Morning dew.

Hillside at the apartments here in Nashville

The Grande View Apartments are providing us a place to stay during cancer treatment.

 That's all for today. I'm not a great photographer, so this is enough for an average guy.

October 30: Beginning to Recover

Today is just day 12 of this round of chemo, which was a full—in fact, a very high—dose of Cytarabine. I would have expected the time frames to be the same as my first round of chemo. On the first round, though, I didn't feel any recovery until day 15. This time, I've been feeling better for four days in a row.

Even the hemorrhoids are healing. (Sorry for bringing those up again.)

Picture by my wife
I've spent some time thinking about what we're supposed to be doing on this earth. If I felt as bad as I felt a few days ago, would I want thirty extra years on this earth? And if I did, why?

I'm a believer. I'm not only a Christian, but I'm a Christian that believes the teachings of Christianity. I may not be good at following through, but I don't believe that my purpose on earth is to enjoy life. I think I'm alive to glorify God. I don't get to choose how my life goes; I've turned that over to God.

I think the result of that is a joyful life.

I think the purposes of God are simple. As the great wise man Solomon concluded, everything else is vanity except to love God and keep his commandments. And as both Jesus and Paul said, all his commandments are summed up in the command to love one another.

I believe that where people honor the message of Christ (which I think is best summed up in Matthew, chapters five through seven, the Sermon on the Mount), people live in joy. There they know that all men are created equal. There they know that the pursuit of money is the rejection of God and leads to misery. There they know that selflessness is the route to the greatest joy. There they know to listen to the guidance of God and live in compassion.

It's definitely fall here in Nashville
Not everywhere knows that. In the heart of India, where the message of Christ has never been preached, a caste system prevails that works just fine for some of the people some of the time. For others, it results in misery, slavery, and sometimes unspeakable cruelty. There, all men are not created equal, but some are born to servitude and others to rule.

I know today's post is not about leukemia, but since I'm thinking about purposes, all that other stuff comes up in my mind.

Here's what I feel like God wants me to do with the rest of my life, after the transplant:

  • Pass on everything I know to my children.
  • Teach until no one will let me teach anymore.
  • Learn how to establish indigenous businesses in third-world countries (and empower others to do so) because I think it's the best way to alleviate suffering in the long run.

Well, maybe I've said too much on a blog devoted to my leukemia experience, not my philosophies. I am, however, among those who think it's a shame that school students are no longer told that Rome fell because of immorality, laziness, and selfishness. I am among those horrified that selflessness and sharing is taking a back seat to "Look out for Number One."

Just a picture I liked as I was walking yesterday
I learned those things in public schools and in Department of Defense schools, not in religious schools. Our culture used to honor meekness and kindness. Too often today such virtues are seen as simply naive. Our culture used to honor self-control, but now we live in the devastating mess of our immorality, trying to figure out how to support a government that has to support the unbelievable number of single mothers and jails that swarm with grown children from dysfunctional families.

We are living what I was warned about as a child in public schools, but that's not much announced today. Immorality destroys a society. The equality of all people and the exaltation of kindness, giving, humility, and self-control produces a society of remarkable joy and opportunity.

Saturday, October 29, 2011

October 29: A Perfect Fall Day

It is gorgeous out today.

The nurse told me to drink lots of fluids and make sure I get caffeine because she thinks that even the disorientation and fogginess I get when I sit up is from low spinal fluid rather than the effects of the Cytarabine. I don't agree, but I'm taking her advice anyway.

So my wife volunteered to go down to the gas station at the bottom of the hill, where I have a card for free coffee after 5 purchases, and get some of their great coffee. She decided to get some exercise and walk there in 35o weather.

When she got back, she was not frozen; she was sweating. She said it was a labor of love, as she hadn't realized just how steep the hill back is.

My daytime bed. Lounging on the couch can be doctor's orders!
So we're having breakfast and letting the sun shine in the window. The next few days, at least in Nashville, are supposed to have perfect fall weather: down near freezing at night, clear skies, and low 60's during the day. I understand from reading my sister's Facebook page that Nashville, NC is not so lucky as Nashville, TN. She said Mother Nature thinks it's winter out there already.

Yeah, the mountains of east Tennessee and North Carolina are beautiful, but they can bring the winter early.

Yesterday I was in the hospital getting checked up. The nurse was not relaxed. I was definitely off. When I was in college, I would have paid money to feel the way I was feeling, but I'm older and wiser now. I like being able to think straight. I was a stupid college student, though I suspect a lot of you can relate.

The nurse thought I was anxious. I couldn't help her. I was in a fog.

They ended up giving me fluids for an hour and letting me lay down. I slept almost the whole time and felt much better.

Today feels better than yesterday, which felt better than the day before, though I'm still at the height of chemotherapy. That's encouraging, especially since I'm having hemorrhoid issues again.

Sorry for bringing up a subject like that again, but it's a common topic among chemotherapy recipients. I'm pretty sure my doctors told me that's an uncommon side effect, but I've have three other chemotherapy patients tell me it was a major problem for them.

It's funny the conversations you end up in. "Yes, ma'am, there is blood; it's this much; it's at this time; it's this color." It's truly disgusting and inappropriate for polite society, but if you're ever going to get cancer, you better be prepared to talk about things you never wanted to talk about before.

Last year's Halloween party at Rose Creek Village. Photo by John Fagan.
Keep in mind, I also have a PSA reading of 13.3, up from 4.0 last year, so there's worry that I may have prostate cancer, too. If I thought conversations about "stool" and "bowel movements" were awkward, you should hear some of the questions they ask about prostate cancer. And young men, if you don't know how they check for prostate enlargement, you don't want to know. Now that's awkward!

It's payback for the fact that we don't have to birth babies.

Ok, so I'm just chatting today. Here's my motivational thought for the day. The Bible says that the heaven of heavens belongs to the Lord, but the earth he has given to the sons of men (Ps. 115:16). We can hold onto our possession of earth and be subject to the ways and sways of the ticking clock of the universe, or we can turn our lives over to God in trust. That's why it's said that all things work together for good to those who love God and are called according to his purpose.

I pray for the peace of all who cross my path, and may my life be full of service to them, but it's good to put your life in the Creator's hands and to grant him control. I fully believe that everything that's happening to me is what is supposed to happen, and that God intends it for my good. This is not just okay; it's God's highest for me and for those around me.

Someone asked me if I have been able to "count it joy" in the trials that I'm in. Of course I have! I don't like pain, and I like confusion even less, but I fully believe that this is God's best, that I am his child, and that he is for me. In fact, I believe he is for me more than I ever have in my life before.

Yeah, I'm glad.

Jesus' death still transforms those who come to God through him, despite the fact that churches rarely teach people how to "know him, the power of his resurrection, and the fellowship of his sufferings." The falling away rate is terrible, and false conversions abound. Nonetheless, there is no denying the incredible power of true conversions in the lives of those who really put their lives into the hands of God.

Thursday, October 27, 2011

October 27: Peacefully on Chemo

Okay, let's see. Today's Thursday. That means they let me out of the hospital yesterday.

To let me go, they have to send me home with "prophylactic" medications. The chemotherapy is going to destroy most of my bone marrow, which means the only immune system I'll have is the antibiotic, antifungal, and antiviral pills they give me. On top of that, due to the "arachnoiditis," or swelling of nerves in the spinal column, I needed pain medication and a medicine to help the nerves heal.

My meds. To some people, not a lot. I'm used to never having more than one at a time.
There was, however, a miscommunication between the hospital and my insurance. As a result, the pharmacy wouldn't release any of the medications.

This was a little frightening for me. Keep in mind that the pain we're talking about was pretty unbearable. I was shaking, sweating, and even yelping out loud from deep muscle pains and shooting nerve pains through my hips and legs. It was about 11:30 when they told me they couldn't release the medications, and I was due for my next pain pills at noon.

"In an hour," I thought, "I'm going to have to figure out how to behave normally in public while I'm in agony."

I did ask the Lord not to spare me anything that was good for me. I often start to feel that prayer is a mistake, but I know my Father in heaven wants what's best for me. It doesn't give him pleasure to torture me.

We went back upstairs and told the nurse what had happened. She said she realized what the problem is, but it would take paperwork and faxes to fix the problem. I told her I didn't know what would happen without the pain medication, and she said she'd try and get that approved separately.

We went to lunch, and then we went to the pharmacy. They told me they were working on my prescriptions, and they had me wait.

Flowers sent to me from friends in California!
By then, however, it didn't matter to me much. It was approaching 2:00 pm, and I hadn't had any pain!

They got me the pain medication shortly after, but I didn't have to take any. The nerve pain is just all gone!

I'm pretty grateful for that. It was very unexpected.

I didn't get all the prophylactic medications cleared until this morning, but I wasn't "neutropenic" yesterday. Neutropenic means that I'm extremely low on neutrophils, the white blood cells that fight bacteria. Those were still up close to 2,000 yesterday. I'm not neutropenic until I'm under 500.

Speaking of which, they also gave me Neulasta shot yesterday.

By "gave me" I mean they released it from the pharmacy. They sent it home with my wife for her to administer it. Before they released me, the nurse gave her a 10-minute session on how to administer a shot to the stomach and how to clean out my PICC line.

That all seems strange to us. Let me explain what that means.

Neulasta is a shot that spurs your bone marrow to make as many blood cells as possible. It is helping my immune system to crash as slowly as possible and to recover as fast as possible. My immune system will crash because Neulasta can't undo the fact that the bone marrow is being destroyed.

It is given in the stomach because it is fat-soluble. It needs to be injected into a fatty area, and on most people the belly is the biggest accumulation of subcutaneous (under the skin) fat. That is certainly true for me.

Oddly enough, for those of you who have ever had such a shot, it's almost painless. There's not many nerve endings in your stomach, and I can barely feel the Neulasta shot.

The other thing my wife had to do was to clean out my PICC line.

As you can see in the picture, that's a line that goes into my arm with two heads on it. It then follows a vein back to the vena cava, the main vein above the heart. They use that to draw blood and to administer medicines, including chemo.

So they gave us some syringes that have saline solution in them. Hannah has to hook the syringe to each of those ports and pulse some saline solution through them to keep the lines open. Our blood has a tendency to clot up around small holes, which is a good thing because that stops us from bleeding. However, that same clotting can block up the end of the PICC line, so we have to flush it once per day.

That's all the basic news.

I'm writing this as I watch the world series with my parents, my brother, and my son. My wife is listening to piano music on the computer. It's a peaceful night, but tonight I definitely feel like a leukemia patient on chemotherapy. Everything is hard. I played a game of cards earlier for about an hour and a half, and I had to have a nap afterwards. I can't imagine what my blood counts will look like tomorrow, but I'm sure they'll be pretty low.

I'm also sort of dazed, like I might be if I stayed up for 24 hours. Nothing's very clear, and my ears keep clogging up. I'm constantly yawning to open them up as though I were on a climbing airplane.

The chemo should be reaching its top strength right about now. I think I have 4 or 5 more days of feeling like this. We'll see how it goes. At least there's not pain at the moment, and that's nice.

Tuesday, October 25, 2011

October 25: Painkillers Are Your Friend

When I was 12 years old, I entered a fundraising event called "The March of Dimes." I went door to door requesting donations for each mile that I would walk of a 20-mile walk.

I'll never forget hitting the 17-mile check in point. My legs, especially my lower legs, were so painful that I wasn't sure i could squeeze out the last 3 miles. A buddy and I sat down not far past the marker and munched on snacks our moms had sent with us. We both knew we couldn't quit after having come this far, so we encouraged one another, got up, and dragged those painful legs through 3 more tedious, agonizing miles.

The stabbing pain I had in my lower legs some 38 years ago was a lot like the pain I felt in my hips, buttocks, and upper thighs last night and today. I've yelped, moaned, rolled, massaged, shivered, sweat, and groaned my way through the pains, as the nurses and doctors raced to figure out what to do for me.

I quit writing on blogger yesterday with a heart rate of 90 and a blood pressure of 160/94. At one point last night, it had leaped to 141 and 165/117.

So today I'm on a regular dose of a strong pain reliever, a muscle relaxer, and a medication that helps nerves heal. I feel pretty good right now as I sit up in bed, my bottom placed firmly on a heating pad which is remarkably helpful.

So, caveat for today's blog: I'm on Dilaudid, which is a rather potent pain reliever, and I reserve "take backs" for anything I say today.

The most likely problem, in the opinion of the doctors (and me), is "arachnoiditis."

Yeah, I'm scared of spiders.

Oh, wait. That's arachnophobia. I have arachnoiditis, which is, according the National Institutes of Health:

A pain disorder caused by the inflammation of the arachnoid, one of the membranes that surround and protect the nerves of the spinal cord. The arachnoid can become inflamed because of an irritation from chemicals ...

In other words, the cramps, shooting pains, and intense muscle soreness in my hips and thighs are one more side effect of the spinal taps!

Either the methotextrate or the Cytarabine affected the nerves near the puncture site when they did the spinal tap. That make sense to me. I know they were very close to the nerves because at one point they touched them, setting off a rapid set of jitters through my left buttock and hamstring.

This arachnoiditis should just heal on its own.

I have noticed that I get the shooting pains along with a noticeable increase in the muscle pain while they're giving me the chemo. Fortunately, my last dose of chemo was this morning. Maybe things will start getting better now, though we don't know how fast.

The doctors want to send me home tomorrow, so they're testing a steady dose of Dilaudil and the other two medications through today and tonight to make sure that deals with the pain. If it does, then I go home.

The timing is perfect, really. My job for the next week is to sit around and be a cauldron for the chemical stew they've dumped in my veins. It is definitely the right time of year for cauldrons.

The Spiritual Side

There is a spiritual side to all this. Last night, my wife reminded me that I had told God I didn't want to miss anything he had for me due to my inability to handle suffering.

I said what?

There's a lot of verses in the Bible about suffering. One of the more interesting Bible promises goes like this:

For to you it has been granted on behalf of Christ not only to believe in his name but to suffer for his sake. (Php. 1:29)(

I'll bet there aren't a lot of people who have Philippians 1:29 in their "Bible Promise Devotional" or posted on their refrigerator.

In the same letter—to the church in Phillipi—Paul gave one reason for that suffering ...

I consider everything to be a loss in comparison to the excellence of knowing Christ Jesus my Lord. For him I have suffered the loss of all things and consider them manure so that I may gain Christ ... so that I may know him, the power of his resurrection, and the fellowship of his sufferings. (Php. 3:8,10)

Paul used to talk about how he "made up in his body what was lacking in the afflictions of Christ" (e.g., Col. 1:24).

It's not that there is something lacking in the suffering of our Lord. God gives us opportunity to participate in redemption. That is not our work, but it is his gift to us.

For Paul that meant beatings and persecution as he preached the Gospel and formed churches in hostile territory. For me, I have to suppose, it means enduring trials with joy in order to encourage and help others. These "momentary, light afflictions," as Paul liked to call them, allow us to talk about Jesus' Gospel in a way that is real and down to earth. It gets past the theories that Christians divide over, and it gets down to things that matter. How do we obtain the grace of God so that we can be a light in the midst of our worst circumstances?

I was just given my most recent dose of Dilaudid, and the muscle pains are working their way back as the previous dose wears off, so I'm going to go now. No sense posting a raving lunatic blog from either being in a lot of pain or being drugged up.

Last bit of news. I'll probably go home tomorrow. After that I'll live very carefully for a couple weeks, avoiding infection while my bone marrow recovers from this high-dosage hit. Then it's back to the transplant team.

Wait, one more ... A friend asked for news on Jerry. He had his teeth pulled last week, and he has a two week recovery time. So some time next week or early the following week, he'll be turned over to the transplant team as well, probably at least a week ahead of me.

Grace be with you!

Sunday, October 23, 2011

October 23: Alive from the Dead

Fortunately, my wife wrote an update, too, so there's on less thing to write about.

Yesterday I was busy doing things worth writing about. Today, I'm writhing in pain, and it's difficult to find time or place to type. I have opted for now, mid-afternoon, standing up at little rolling table they provide for meals. It raises up high enough that I can type standing.

Friday night I was up most of the night with insomnia, caused either by the chemotherapy or the coke I drank after the spinal tap. I was trying to follow instructions I had received from a friend in Ireland for what to do after the spinal tap. He had been given a coke, so I asked for one.

Maybe it helped. Thank God that today there's no headaches, so I'm able to stand up.

I'm not sure why this spinal tap, which should have made the headaches worse, has resulted in no headaches. I'm sure it's partly because I did things as exactly right as possible after the procedure, but I'm chalking it up to everyone's prayers. Thank you so much, all of you.

Saturday morning (yesterday), I had one of the most delightful mornings ever. I talked with the lady who delivers our breakfast trays for at least an hour. She's a former drug addict who's cleaned up her life and become a Christian. She runs a home for mentally ill—disabled but functional—women here in Nashville. We talked and enjoyed one another's company. I got some friends to help with Christmas presents for the ladies in her home, and we made arrangements for me to visit here and there. I've been asking God for the opportunity to serve him here in Nashville somehow, and that's a great way.

We got to talking because she saw a copy of my book sitting out in my room. I had it out to give to a nurse who had asked about my book. When I gave her a signed copy she told me it made her weekend, and she promised to go to church the next day (which is today). It was fun. That nurse is Margie, and she's a blast. She's one of my favorite nurses here; we've had some pretty interesting conversations at times.

After all that, I got to talk to another one of the care partners, who told me about some struggles going on in her life and how she handles them. It was very encouraging. If you don't mind, take a moment and pray for her son, who is in jail, that God would turn his life around.

So the morning was beautiful, and my kids, my parents, and my brother came to visit in the afternoon. It was a great day.

By evening I decided it would be a bad idea to stay up most of another night. I got a lot done staying up Friday night, including a blog post on evolution and a podcast.

Last night, though, I figured I'd better get some sleep, so they gave me something called Adavan (sp?). It really helped for sleeping. The problem is, I woke up at 4 a.m. with pain in my hips, which immediately developed into a mean case of sciatica in both legs.

For those of you that don't know what sciatica is, give thanks to God. It's shooting nerve pains down your hip or legs. It comes from something happening to the sciatic nerve, and it's a common problem among human beings, especially if you work in an office.

I've been doing all sorts of things to deal with the pain. I've laid on the floor on a yoga mat on my back. I've done trigger point therapy. I'm on 10 mg of oxycodon at the moment. For a while it was really under control well, especially at the height of the previous dose of oxycodon. It's kicked back up now. They came in to take my vitals, and my blood pressure was 164/90 due to the pain. My heart rate is up from its typical 68 to 90.

The nurse just ran me through a couple of tests, and she's going to get a doctor, so I better wrap this up.

Thank God that there's no spinal headaches. I don't know how I'd deal with both! Walking helps a little with this sciatica.

Better go. Thanks everyone!

Friday, October 21, 2011

October 21: Day 3

So this has been a great day.

Been doing a lot of this lately
In the morning, I asked about a getting a blood patch to take care of the spinal tap leak that I must have. Dr. Greer told me that it's a very good idea to do a spinal tap and a blood patch at the same time. They really need to check my fluid and make sure that it's clear of leukemia, and they may not be able to do that next week when my blood counts get low. When you don't have platelets to clot nor neutrophils to fight infections, then it's good to avoid even very minor surgery like a spinal tap.

However, he said, that call was not up to him but to the radiology doctor. He said he'd ask.

Later in the morning I saw dry, flaky skin on the side of my nose. Oddly enough, that was really good news for me.

I realized that I had moved from good ol' humid Tennessee weather into arid, microbial-unfriendly hospital air. It's just the sort of environment which would give me sinus headaches after hours of sleeping. Long experience tells me that sinus headaches feel a lot like caffeine headaches which feel a little like low-spinal-fluid headaches. Spinal-fluid headaches, for me, navigate to the back of the head and neck as they get stronger. That doesn't happen with caffeine headaches and certainly not with sinus headaches.

Anyway, the reason that is good news is that I'm pretty sure the early morning headaches are sinus headaches, not spinal tap headaches. This means laying down still relieves the spinal headaches, which I was doubting. I thought I was consigned to having headaches whether I laid down or not.

So, if I get a headache laying down, the treatment is hot water in a cup. Breathe the steam, headache will go away. If I get a headache standing up, lay down.

That will get me through to Monday, which brings us back to what the radiologist said.

The radiologist said he can't do a spinal tap and blood patch at the same time. He said a few days need to pass, and he hopes he can do it Monday. I don't think fast enough to think of asking why Monday's a maybe. I just took that as an answer, as foolish as that is. On Tuesday, they may not be able to do a blood patch.

Oh, if you haven't read already on this blog, a blood patch is where they inject your own blood into or near (I don't know which) the hole from the spinal tap, and the clotting factors in the blood seal the hole.

The problem is that Dr. Greer estimates that by Tuesday or Wednesday my clotting factors will probably be too low to be of much worth.

The sky from Vanderbilt
So Monday would be really good.

Or maybe because I'm doing everything right this time, laying around for hours, the hole (or holes, in case the previous ones haven't healed) will heal up by Monday and there won't be an issue.

Either way, I'm in really good spirits, delighted that I'm not going to be enduring very unpleasant headaches for the next few days.

Anyway, they did the spinal tap this afternoon, in some hope that it would be clear of leukemic cells. I just checked my clinical record, and I don't have those results listed yet. I also forgot to ask when we would know. I'll ask the resident tomorrow morning on rounds. Vanderbilt has a web site for patients to check on their on test results, though not all of them show up. Some don't show up at all, due to being too complicated, and others don't show up until a doctor's review. The spinal tap results do show, but they're either not ready yet or they have to await doctor's review.

On top of the good headache news, I also read through the scrapbook from my 50th birthday. It was only ready a couple weeks ago, and I saved it for when I got in the hospital. I read it this morning, and I'll admit I cried ... a lot. It was, uh ... delightful. Shoot, that's an understatement.

So this has been one of the best days I've had in a long time.

Well, easiest. Dark days are not bad days. You know the scoop ... "All things work together for good ... "

October 20 Update

Reporting live from Vanderbilt Medical Center ...

Dr. Greer, whose gray hairs are definitely an indicator of wisdom.
I got the scoop from Dr. Greer this morning as to the exact purpose of this extra round of chemotherapy. Once they found the blasts (immature blood cells that are indicative of leukemia cells) in my spinal fluid, they wanted to treat me with a chemotherapy that would hit the entire central nervous system.

Cytarabine, also called Ara-C, crosses the blood-brain barrier, so it's the chemo of choice for this round. I get two doses a day for six days, and then I'm done. They'll do another spinal tap afterward to make sure the blasts are gone, and then it's back to the transplant team.

Six days, however, means six days to receive the dosage. Then there's a week for it to churn around in my body, then at least a week for my blood counts to recover. So this is a three-week trip minimum.

Read with Care

In face-to-face interactions, I have a goal of being a blessing to people. I want each interaction with me to result in a little more power to them to live life the way God made them to live it. That doesn't mean that I know specifically how God wants each person to live, nor does it mean that I necessarily have any advice for them. It just means that I want them to walk away more empowered by being more hopeful, less concerned about themselves, more trusting of God, and more joyful.

Mostly, that just means being me and enjoying people, but also remembering that life isn't about me. How I'm doing, in most cases, really doesn't matter.

On this blog, however, the goal is not the same. The goal is to write in such a way that people get to experience this with me as much as they want to do so. Maybe you'll have to go through something similar to this some day. Maybe you know someone who is going through something like this or who will. I'm trying to let you experience it, not just tell you about it, in the hope that it will help you or someone else in the future.

So I'm making sure to include the worries and unpleasant feelings. Please don't worry about me! I'm doing great! I have lots of friends and lots of encouragement; so much so, in fact, that I barely have time to write these blogs.

If you want to give me words of encouragement, that's great. Encouragement and kindness is wonderful even when I'm doing good. But please don't read the following and think I'm doing terrible. I'm just telling you what the route to continuing to do great feels like, and it doesn't always feel, well, great.

Dark Nights and Painful Days

The headaches from the spinal tap are apparently wearing me out. A couple nights ago I had my first bout ever of insomnia where I felt really tired but couldn't sleep. Before then, I've only had insomnia in which I just wasn't tired. Those nights, I can get up and do something, and usually I feel just fine the next day.

Not only was I tired but I felt miserable, sort of dark and hopeless. I got to wondering about whether I was going to die, and there was nothing pleasant about the thought. I was awake for a couple hours in the middle of the night feeling that way.

I've learned from experience that you don't have to give in to how you feel. If you want to be a Christian, then sometimes you have to do what's right even when you don't feel like doing it. "Rejoice" is actually a command in the Bible, and although there are times sharing tears, there are also times when we should rejoice even though we don't feel like doing so.

Just because I feel despairing doesn't mean that I have to be despairing.

I don't know about you, but my brain is capable of doing all sorts of negative thinking on its own. Suspicious thoughts, fearful thoughts, worrisome thoughts ... they all flow right through with no effort on my part. But it's my choice whether I'm going to pay attention to those thoughts or not.

The other night, it took me a little while to decide what to think about so that I wasn't thinking about all the doom and gloom that was surrounding my brain. Once I got my mind off the negative stuff—which didn't take long because it quickly seemed useless to think about those things—I felt like God was telling me I should start praying for everyone I know.

So I did. It got tiring after a little while, but I really felt like God was urging me to continue; that he really wanted me to get to one particular person.

Apparently I got to that person, because after praying for him, I felt comfortable just shutting my mind down and going to sleep.

I woke up in the morning—I think this was two mornings ago—just as miserable as when I went to sleep in the middle of the night. Mornings, however, are really easy. I just get up and go spend time with all the wonderful people I love, and those miserable, dark feelings evaporate.

It wasn't much different when I checked into the hospital.

Yesterday, I had a dentist appointment at 12:30. I went straight from there to lunch, where the headache from sitting up got pretty painful. I rushed back to the car so I could lay down, then from the car to the waiting room to lay down again. Fortunately, the first thing to be done was to get a PICC line put in. The PICC line is a small tube that goes from my upper arm through a vein into the "vena cava," the large vein right above the heart. Since the PICC line goes in on the inner part of the upper arm, it's put in while I'm laying down. That took a little while, and it was a big relief for my headache.

The whole time that was going on, however, my brain wanted to think about the people that don't make it. I think at one point I saw a news item on Iraq, and I thought about all the young people who lost their lives defending our freedoms. That should be an inspiring thought, but my brain wanted to focus on dying, not the life that dying brings.

Again, if I leaned into every miserable thing that my brain has ever suggested I think about, I would have already lived a pretty miserable life. I'm not interested in that, so I just went about all the busy things we had to do yesterday. It didn't help that I had a headache pretty much all the time that I was standing.

Now, mind you, I'm writing all this, and I didn't tell anyone about any of this. To me, those sort of thoughts don't have the right to be reported. If I'm not going to pay attention to such thoughts myself, why would I ask others to pay attention to them? You could have spent the whole day with me yesterday, and I would never have said anything ... except that laying down to get rid of the headache was really nice.

Not long after they got me in my room, I fell asleep and slept the entire evening. The nurses kept waking me up for this or that, which was difficult, but by late evening I was even sleeping through the blood pressure checks.

Anyway, I woke up this morning—really early from sleeping all evening—and walked and rode the exercise bike. I felt great, and all that crazy stuff in my mind is gone. No misery, no darkness, no thoughts about dying.

Wrap Up

It's been nice seeing all the nurses and aides again, even though it's not your typical "reunion" circumstances.

Oh, and for those of you who know that the spinal tap headaches need to be treated, we're going to talk with the doctor in the morning about doing a "blood patch." If the problem is that my spinal fluid is still leaking, they will take some of my blood and inject it. Then my blood's own clotting factors, which are still okay at the moment, seal the leak.

I know this isn't the most fun post I've had. Things are better than they sound. Friends visited today from Rose Creek Village, and we got to talk and pray together. My brother was here a lot of the day. It's been a great day. Yesterday was difficult, but no one's guaranteed one wonderful day after the other. Being brave and making good choices is simply part of living on earth, and it's the pressing through those days that lets us be ready to enjoy the easy ones.

Tuesday, October 18, 2011

October 18: Preparing to Return to Vanderbilt

Well, it's back to the hospital for another round of chemotherapy tomorrow.

It appears that finding blasts in my spinal fluid surprised the doctors a bit. The transplant team dropped me and sent me back to Dr. Strickland. I understand it's for just one more round of chemo.

Dr. Jagasian (of the transplant team) explained that it matters how much my leukema "knows how" to get out of my blood. Obviously, my leukemia was pretty good at it because it got into my skin, into my lymph nodes, and into my spleen. The chemotherapy took care of all that, but when we started the transplant process, he also wanted to make sure it hadn't made its way into my spinal fluid.

It had.

If I understand correctly, which I think I do, the spinal fluid is on the other side of the blood/brain barrier. Your body is very protective of your brain, so the blood vessels that go to the brain do not have unrestricted access to the brain. There's a "barrier" of cells that nutrients and oxygen have to go through to get to the brain.

As a result, it is not only difficult for pathogens to make it to the brain, but it is also difficult for medicines to make it to the brain.

The spinal fluid is the same fluid that is around the brain, which is why my spinal taps last week have been giving me headaches whenever I sit up or stand up. I believe that spinal fluid is on the brain side of the blood/brain barrier. Thus, it should have been difficult for the leukemia cells to make it into that fluid, and once it did, the chemotherapy, which also can't penetrate the barrier, didn't reach those cells.

So they poked a hole in my spine and stuck medicine directly in that fluid.

When they do that, it leaves a needle-sized hole, which takes from 1 to 7 days to heal. Sometimes there's some leaking, and if the fluid around the brain gets low, you get awful headaches.

I've been having those for a week, though laying down makes them completely go away.

I have a friend in Ireland, a "pen pal" if you will, who had Blastic Plasmacytoid Dendritic Cell Neoplasm and spent 191 days in the hospital. He wrote me and told me that when he got his spinal tap (he had 6), they made him lay down for six hours afterward. He wasn't even allowed to get up for the bathroom. (Bottle was provided instead.)


Last Monday, when they did the first spinal tap, they said bye and I left. I went from there to an appointment in the Urology clinic to talk about whether to do a biopsy for potential prostate cancer. By the time we were out of that crowded clinic, we had to hurry to Caleb's soccer practice. When we got there, it turned out the practice was at 7 pm rather than 5:30. We hung out by the car and talked, and then I watched his practice for two hours, alternately sitting on a cold, metal bench and walking around.

We got home around 10 pm, 8 hours after the spinal tap, and I hadn't laid down once.

So the next day I had headaches, and the day after that I had headaches and nausea. Still, no one told me that if I would spend a lot of time laying down the hole in my spinal column would heal faster. They did, however, tell me to drink a lot of water, which is helpful.

Only on Thursday afternoon, when I had a second spinal tap, did the doctor tell me I needed to lay down.

Still, they didn't leave me there to lay down. I drove home, meaning I waited outside for valet parking to deliver the car, then rode for 15 minutes. It was at least half an hour before I laid down at all.

Last night, after laying around pretty much all day Friday, Saturday, and Sunday (well, except for some walking on Friday and Saturday morning), I tried to go out to eat with my family. It really didn't work. Despite some hydrocodone and some nausea medicine, there reached a point where I couldn't both bear the headache and look at the food. Fortunately, it wasn't real crowded, so with some prompting from my wife, I laid down in an empty booth, somewhat worried about what the O'Charley's employees would think. Haviylah (a friend) and my wife assured me they'd take care of the employees.

After a bit I tried to get back to the table, but it didn't work. I ended up laying in the back of the car until they were done. Of course, the laying down was a such a relief of the headache that the wait was very pleasant.

It seems better this morning, so I'm trying to get a couple things done. I answered some emails, and now I'm getting this blog done, and I only have the mildest headache; not bad at all.

Okay, one final thing. I forgot to complete a thought up above.

I think when they found out that the leukemia crossed the blood/brain barrier into the spinal fluid, they weren't satisfied with one induction round and one consolidation round of chemotherapy. They sent me back to Dr. Strickland for another round. I think this is the last round, and they're going to give me one more spinal tap, too. We'll see.

Judging by the urgency to get me in the hospital, I suspect it's going to be a pretty decent dose of chemo. They talked about canceling my dental appointment tomorrow if it interfered with the admissions process. As it turns out, they're not going to cancel the dental appointment, but their willingness to do so indicates some urgency on their part to get me in.

So, next round begins Thursday, and I'll be admitted tomorrow afternoon, right after the dental appointment.

I need to go lay down :-), so no pictures again today.

Saturday, October 15, 2011

October 15: Having a Great Weekend

As it turns out, laying around really does help (with recovering from a spinal tap). By the end of the night last night, I sat up for a good hour, then went to bed with no headache at all. So this morning I got to go for a walk, and I did some weightlifting. I just avoided exercises that involved a lot of back movement.

Our house is full of visitors. It was great to hear the noise of people chatting first thing in the morning.

So many people always reminds me of a book I read called Revolution: The Story of the Early Church. It's a retelling of the first few chapters of the Book of Acts (from the Bible) by Gene Edwards. I have some problems with Gene's ideas about how a home church should operate, mainly because experience says it doesn't work very well, but there's no denying he's one of the best storytellers there has ever been.

Anyway, he describes the wild new life of the early church, as they tried to take care of hundreds of people who had come to Jerusalem for the Feast of Pentecost, then stayed after they heard the Gospel. He described waking up on a living room floor to another saint, and the exuberant joy of just being together.

It felt a little like that this morning.

As the morning passed we added David and Ariel and their kids, who stopped in on their way to the airport. They're "missionaries" to Sacramento, California, living out there for the purpose of helping Christians live that together life that Gene Edwards described. (As those of us who have tried know, being family is difficult for humans to do, especially when they're not already family biologically. It takes an ongoing infusion of the love that comes from heaven, and that love does not come in response to a set of good Christian rules. It comes only in response to a real and spiritual relationship with God.)

My parents are in town for the weekend. My brother and his wife are due this afternoon. My two oldest sons have also shown up, along with a couple of their friends. Of course, the way we live, my kids friends are usually my friends, too.

So it's a great day. I'm still having to lay down on and off to stave off the headaches from the spinal tap, but that's working great.

So, I'll send more news when I have it. I'll have to call the hospital Monday to find out when they're going to admit me for more chemo and how many more spinal taps they're going to do. Nurse Works made it clear there's going to be more, but there's no more scheduled at the moment.

Have a great day!

Friday, October 14, 2011

I haven't heard anything about this next round of chemo yet, not even when it will happen. I wouldn't be that surprised to have them call and say, "Can you start tomorrow?"

Actually, since it's Friday, I would be surprised.

I got another spinal tap yesterday. They pulled a little more spinal fluid, so now every time I stand or sit up I get a headache. I'm going through the day on hydrocodone right now so that I can get up when I want to without too much pain.

I told the doctor yesterday about my experience between Monday, when I got the first spinal tap, and yesterday. Monday was okay. Tuesday I had a headache whenever I stoop up too long, and Wednesday I was really nauseous. I asked if that was normal. He said, "I wouldn't say that's normal, but it's not surprising."

So I asked him if this second spinal tap would make the headaches worse. He took a breath like he was going to give an explanation, then he let it out and said, "Yes."

Then he explained to me that the hole in the dura mater, the thick lining that surrounds the spinal cord and holds the spinal fluid, doesn't just heal up instantly. It will leak until it heals, and in most people that happens in 24 hours, but it can take up to a week in others. So sitting up or standing puts maximal pressure on the hole, letting spinal fluid seep out. It's best, he said, to lay down as much as possible the first 24 hours so the hole heals faster.

I wish they'd told me that on Monday.

On Monday, I went from the spinal tap to Caleb's soccer practice. We drove for half an hour, then we waited around for almost two hours because we had been given the wrong time for practice. Then I watched his practice for almost two hours, then we drove another half hour home.

That's not exactly laying down.

So I've been mostly laying down since yesterday. I've been pretty good about that since every time I stand or sit up I have a headache. If I'm up for more than about five minutes, like right now, I get nauseated. So I'm going to quit doing this update and go lay back down.

By the way, I had a depressing update a couple days ago. I'm in great spirits today. It's very easy to be upbeat. I just got done with a Bible class with my kids, most of which I did in a reclined position, which wasn't too bad. I have lots of visitors coming this weekend, and I'll lay around and talk to them and drink a lot of water.

I'm probably losing weight pretty quickly, though, as sitting up to eat makes me not want to eat! I eat enough to stay healthy, and I'm mostly eating fruit, so it's a great diet.

I'd really rather have my spinal fluid back, though.

Have a great day, y'all. Don't read this like it's depressing. I'm enjoying the family and the day and looking forward to the visitors.

Thursday, October 13, 2011

October 13: Something New Every Day

Hwy 64 near Rose Creek Road
Hi again, everyone!

The transplant committee met, and they want me to go through one more round of "consolidation" chemotherapy. That's chemotherapy that is given to maintain remission after "induction" rounds that put leukemia in remission. I'm sure that's the result of finding "blasts," or immature blood cells in my spinal fluid.

When they found the blasts and called me, they had not yet determined that they were abnormal leukemia cells. However, there were three good reasons for thinking they were leukemic.

  1. I had leukemia
  2. The chemotherapy I received wouldn't reach the spinal fluid
  3. The blasts aren't supposed to be there

Hence, the conclusion that those blasts are almost certainly leukemia cells that made their way into the spinal fluid and thus escaped the rounds of chemo. They are treating those directly with methotextrate injected into the spinal fluid. They'll give me a second dose today.

There will be more methotextrate and lumbar punctures next week, but they want a standard consolidation round of chemotherapy as well. Dr. Strickland is supposed to decide by today what I should be getting, and Nurse Works is telling me that I'll be admitted to the hospital for this round.

Jerry called last night, and I told him I'm back on schedule with him. He'll get the last of his teeth pulled this coming week. Then he'll need two weeks to heal, and then he can start his tests for his transplant. It will be nice to through the transplant at the same time he is. We encourage each other.

Oh, and I feel a lot better than yesterday. I'll make sure to take my anti-nausea meds with me to the hospital, though, just in case.

Wednesday, October 12, 2011

This morning was rough. Mild headache and not-so-mild nausea. Basically I varied from feeling like I was going to throw up to a gentle, listless misery.

Hopelessness trolled my streams of thought, leisurely spreading discouragement wherever it went.

Dr. Tenenholz, the radiologist; I didn't see him today, but he'll be in charge of irradiating me before the transplant.
I was too tired to do anything about it. Apparently all the guards of the gates of my mind were down. Either on sick rest or taken out by invaders.

I did the only thing I could. I hunkered down in a small corner, way at the back of my mind where I wouldn't be noticed by the invaders and where I couldn't hear their miserable songs. Then I counted the waves of nausea, hoping to fall asleep.

I felt really sorry for people who have to feel that way every day! No wonder it's so hard to cheer them up!

I tried to pray, but if there was a ever a day when prayers seem to go nowhere, it was this morning. I was locked in a little hole in the back of my brain. My prayers weren't even escaping from there, much less ascending to heaven.

I've been a Christian 29 years, and I still haven't figured out some obvious things.

It didn't matter if my prayers ascended to heaven! God, among all the other places he is, was hunkered down in that little hole in my brain with me. He was listening.

First I went to the labs this morning. My blood wasn't much improved, but it was improved a little. In fact, the little improvement might have made me nervous, but they did a marrow biopsy last week, and I know my marrow's clean. No cancer at the moment. As far as we know those leukemia cells are only hanging out in the spinal fluid.

The nurse who draws my blood is this young black lady who at least as loud as Chavvah. I'm pretty sure she's louder. She always tries to make sure she gets me, she remembers my name, and she calls me handsome and sweetie. You can forget a lot of misery while she's around.

She was the first to ask if I wanted some nausea medicine. (I do, but it was left at home.)

After labs, we had a two-and-a-half hour wait for the prostate biopsy.

Originally, the plan was to wait in the cafeteria, but couldn't bear to see food, so a second nurse, seated at a desk, overheard us and asked if I had nausea medicine. Finally, I got a message from the nurse practitioner in charge of my case asking me to come to the stem cell clinic.

I went to the stem cell clinic telling the receptionist that Nurse Works had called me in, but I didn't know why.

Nurse Works pulled me to the back of the stem cell clinic and gave me an examination bed to lay in. She asked me some questions, and then she gave me an anti-nausea medicine that she said would be better than even what I have at home. She left the room, and I fell asleep.

I woke up, and a decent portion of the misery was gone, but apparently not all of it. We went up to Urology, to get the prostate biopsy done, and I went to sleep, turning sideways and laying my head across the back of a chair. My wife, who takes really good care of me, asked them if they had a room I could lay down in, and they did!

I went right back to sleep until the doctor showed up. He looked at me, and apparently I didn't look too good. He recommended putting off the biopsy.

Now keep in mind that this is the guy who on Tuesday could not understand why I would consider putting off the biopsy until after the leukemia treatments. Today, he couldn't understand why I would want to go through the biopsy while I looked so awful. (Keep in mind, I felt a lot better than I had an hour or two earlier.)

Then he had the audacity to bring up the fact that I wanted to skip the biopsy when we discussed it on Tuesday. I said, "Yeah, and I didn't skip it because you thought it was important!"

It was like that was news to him. He said it wasn't so important that he should do it while I'm miserable. He told me go home, and if Dr. Jagasia, my transplant doctor, wants it done, he'd do it on Monday.

I tell you that story because to me it's an answer to prayer. I know I'm supposed to go through these leukemia treatments. I don't have anything for prostate treatments. I don't know what to do. They left this biopsy to my decision, but I didn't have enough information to make an informed decision. So I decided to just go with what the doctor said ... and pray.

So today, he didn't want to do it. He was ready to just put it off until after the transplant and the recovery, months down the road. That's a big turnaround, in my opinion, and not one that happens just because I was a little nauseous today.

Either way, we went home. We went home with a new nausea prescription and a prescription of oxycodon for today's headache and any further headaches I get from "LPs," lumbar punctures (spinal taps). I now have at least three more spinal taps to treat the leukemia there, and if I'm getting headaches from the first one, it's pretty likely I'll get them from the future ones.

Once I got home, I slept for hours. I don't know how many hours. I woke up at 4:00, so I think it was at least three. I was finally hungry, so Hannah made me a very late lunch, and now I'm writing this update.

Tuesday, October 11, 2011

October 11: A Little Difficulty

So today I had troubles.

No, it wasn't pain, and it wasn't worry about leukemia. It seems crazy to me that I can have grace for leukemia, and even the pains of chemotherapy, but then be irritable and depressed about much more minor inconveniences.

So, first I got up with a mild hangover from either the 10cc of spinal fluid they removed yesterday or the 1.5cc of methotrexate, a chemotherapy, that they put in my spinal fluid. I slept in till something like 8:30 because my body felt like it weighed 300 pounds and 100 of it was my head. No real headache, just some of heaviness and mental fog.

Then I ate quickly because I knew I needed to teach a Bible class with my kids. The Bible class itself is a blast, at least for me. We wander almost every rabbit trail that comes up. We started in Genesis one, which took us three classes, and we did Genesis 6 through 9 today, four chapters in one day. Of course, that's because we took care of talking about the nephilim, who are mentioned in Gen. 6:1-4, along with Zechariah Sitchin—a Sumerian historian and author of a number of books addressing a very interesting and obviously incorrect theory he has about the source of the Mesopotamian gods—and Sumerian, Akkadian, Babylonian, and Hebrew history.

Like I said, we get to talk about whatever we want.

Anyway, I ate quickly and went to swish with the special bacteria-killing mouthwash that the dentist prescribed. That was the first thing to irritate me.

There's probably no good reason. The dentists at Vanderbilt have developed this special DNA test with which they can test the exact kinds of bacteria in your mouth. With this information, they can prescribe you antibiotics to attack any potentially dangerous bacteria, the ones that are no problem right now but which may stage an uprising should your immune system shut down. Of course, we have a plan to shut my immune system down for at least two weeks, probably a bit more, and then suppress it for at least three months, but more likely a year.

So this DNA test must have turned up some bacteria that they don't think will play along with our immune system plan. This mouthwash is part of the plan to kill them. They also prescribed me an antibiotic, and they asked me to buy a "water pic" and use the mouthwash in it as well.

Along the way, though, the pitch they made for doing the DNA test and the way they told me about needing the water pic all bugged me. I felt like the DNA test pitch was overdone, and I felt a little insulted by the way they told me I needed the water pic. (As in "hey, the hygienist said I do a good job flossing my teeth, so what do you mean telling me I ought to use a water pic?")

I'm positive that there's no basis for feeling insulted and conned, but the feeling has gotten lodged in there anyway.

So I did the mouthwash--but not the water pic because it has to charge for 24 hours before first use--and then the Bible class.

As soon as Bible class was over, the phone calls started coming.

The first one was the nurse telling me that they found blasts in my spinal fluid. This almost certainly means they didn't get all the leukemia. Some managed to hide out there.

That's no problem. That's part of the leukemia that I have so much grace for.

Then she told me that they have to postpone the transplant to treat the spinal fluid. It won't be long, but it's a postponement.

Now for all intents and purposes, that's good. It actually gives me an opportunity to go spend time with some people that I really want to spend time with. It fits into my brother's planned visit better than the original plan. In fact, in every way, the delay is "all good."

In every way except one, that is. My brain refuses to cooperate with the modern era's need to multitask. I just want to do the next thing, get it over with, and then move on the the thing after that. I don't want to postpone the transplant. I just want to do everything I need to do, jam it in there, and get it over with.

Minor, but I was already irritated about the dentist and the mouthwash and water pic.

But the calls kept coming. I'll bet I got at least seven from Vanderbilt over the next few minutes, scheduling more minor things. I was also getting texts and phone calls about scheduling this weekend, both about hotels in the area for my brother and about whether another visit this weekend would still work.

All this scheduling put my mind back on a prostate biopsy.

Yeah, you may have read already that I had a PSA, a blood test for prostate cancer, which gave a reading of 13.3, when less than 4 is normal. In fact, last year my count was 4.0, and in a year it's jumped to 13.3. The urology doctor told me yesterday that this is an unusual jump. (I hear the word unusual a lot concerning my case.)

We went back and forth over whether to do the biopsy yesterday. He says my chances of having cancer based on that PSA test is 30%. He says my chances of having a rapid-growing, dangerous cancer are 5 or 10%. If I do have such a cancer, he can give me a hormone which may put it in remission, which will make the chances of treating it a year from now much better. If I turn down the biopsy, we have a 5% chance or so of finding out next year that I have an untreatable prostate cancer that will kill me.

When it rains, it pours, huh?

Of course, I have a 70% chance of not having prostate cancer at all.

Of course, the biggest factor in all of this is that a prostate biopsy is not exactly a noble experience. In fact, it all starts tonight, the night before the procedure, when I have to have an enema.

Let me see, enema or die of cancer? That is a really, really difficult choice. It might be difficult to explain to God on the last day, though. "Listen, Father, I'm really sorry for not taking care of that cancer, but they were going to give me an enema!!! I volunteered to be martyred and to suffer through cancer if that's what you want, but an enema?"

Sorry for talking about such things, but today this is a major issue in my life!

So I'm going to do that, and I'm going to let them do the biopsy in the morning. Then on Thursday, they'll put more methotrexate in my spinal fluid.

There will be more methotrexate and lumbar punctures next week, but they won't decide how much and when until the transplant committee meets on Wednesday. (The transplant committee handles more cases that just mine. They talk together about all of us. Makes me feel like we're all one, big happy family ... okay, not everyone's happy in that family.)

Of course, the delay means I'll be more back on course with Jerry. His transplant was delayed a week because the dentist took a week off and canceled all his appointments! (Be easy on the dentist, he probably had some unexpected event come up. For vacation, he wouldn't have scheduled those appointments in the first place.)

The end of all this is that by lunchtime I was pretty depressed. I didn't act depressed; I'm not allowed to do that, but I felt depressed.

For me, there's two routes past depression. I can just smile and have a good attitude, which I'm pretty good at, or I can "cast all my cares on him because he cares for me" (Philippians 4:6).

What I've learned over the years is that even if you're patient or cheerful or good-natured, there's always an end to human goodness. You can always be pushed past your patience, cheerfulness, or good attitude. It may take a lot, but there's somewhere you'll snap.

God's attributes, however, are infinite.

The purpose of the New Testament is not to teach us to be more patient or cheerful. The "New Testament" is not a book, and we're mistaken when we refer to the 27 writings in the last quarter of our Bibles as the New Testament. The New Testament is a covenant between God and men, and it's not meant to teach us to be patient; it's meant to give us the patience of Jesus Christ, the Logos of God.

Christ Jesus ... has been made our wisdom, righteousness, holiness, and redemption. (1 Corinthians 1:30)

"Casting all your cares upon him" means looking around for Jesus Christ, the truth of God, wherever he may be found. That may mean running to a corner for prayer, or it may mean a lot of other things. To me, it means it's time to quit thinking about my cares and start hunting for what Jesus is saying and doing.

I know that's weird to unbelievers, but it's quite real and powerfully effective to me.

I heard a scientist say once that he can't prove God, but that his experience is that theories that have God in them work.

I like that saying.

A Little Summation for Those That Just Want News

I have a 30% chance of having prostate cancer. They'll do a biopsy tomorrow and we'll have a much better idea. Even if I do have prostate cancer, it won't be treated until the leukemia is all done.

I still have leukemic cells in my spinal fluid. They're going to treat those with a chemotherapy, methotrexate, for the next couple weeks, which will delay my transplant a bit.

This is one more reason to go with the fully ablative transplant, which means a little more chemo and a lot more radiation. We were already leaning that way. The decision will be made at that meeting tomorrow, which begins at 3:30 pm. I'll get a call afterwards.

That's it. Everything else is the same for now. The expected day of transplant is more likely to be around Nov. 4 now, with the "conditioning regimen," the chemo and radiation, starting around Oct. 28.

Monday, October 10, 2011

Health And Quality Of Life: Through Cancer And Beyond

This is a guest post by David Haas of the Haas Blaag:

Maintaining a healthy body can tremendously improve a person’s well-being and quality of life, both during and after cancer. During treatment, cancer patients are looking for ways to cope with their symptoms and the side effects of treatment. Afterwards, survivors are generally eager to return to good health. 

Beyond their initial recovery, cancer survivors are often left feeling tired, depressed, angry, or lost. Fortunately, there are ways to address these issues, improve long-term health, and truly enjoy life after cancer. The American Cancer Society (ACS) recommends certain individual choices in several key areas, including weight, exercise, and diet.

A Healthy Weight

Research links weight gain, overweight, and obesity to several different types of cancer. According to the National Cancer Institute (NCI), breast, prostate, endometrial, colon, kidney, and esophageal cancers are a few examples. To help prevent cancer from returning, cancer survivors should avoid excessive weight gain and strike a balance between food intake and physical exercise.

An Active Lifestyle 

Physical activity is beneficial for everyone, and cancer survivors are no exception. Regular exercise improves a person’s physical, psychological, and emotional well-being. Exercise makes cancer patients and survivors fitter and stronger. It also reduces tiredness, improves mood, and increases self-confidence. The ACS recommends 30 minutes of exercise a day, five or more days a week. 

Some cancer patients are unable to exercise or participate in physical activities. People undergoing mesothelioma treatment, for instance, are weak and may require machines to help them breathe. And breast cancer survivors cannot exercise after surgery, until drains and stitches are removed. But most cancer patients and survivors can start with mild or moderate doctor-approved activities, increasing intensity and duration over time.

A Healthy Diet

According to the ACS, everyone, including cancer survivors, should strive for a healthy diet that emphasizes plant sources. They should consume five servings of fruits and vegetables each day, along with whole grain foods. Red meats and processed foods are discouraged. And people should limit their alcohol intake to one or two drinks a day. Like exercise, a healthy diet can combat fatigue, depression, and other after-cancer issues. It can also help prevent cancer recurrence.

A healthy body is as important for cancer survivors of any kind. A balanced, healthy body is better able to cope with the struggles of cancer. More importantly, a healthy body improves quality of life, which allows people to enjoy their life through cancer and beyond.

Saturday, October 8, 2011

Guest Blog and Neat Links

Okay, some guest things.

Leilani and I fell asleep at the festival last weekend; it was about 40 degrees outside, and we were exhausted.
I found a blog by the mother of a 10-year-old leukemia patient. I've got to tell you how I found it, then I'll give you the link. Good blog.

A man named David Haas asked me about putting a guest post on my blog. I got it, and while it's a much different style than my writings, I thought I'd go ahead and let him do it. That will go up Monday morning.

In the process of seeing who he is, I went to his blog, which is also really good. In fact, it's better than his guest article, but that's because his guest article serves a different purpose than his blog. (I'll link his blog below, too, because I want to say something about it first as well.)

Anyway, one of the comments on his blog was from a lady who said her blog is called "THAT SUCKS."

Yeah, That Sucks!

As it turns out, that's what her 10-year-old son said when he was told that his leukemia had relapsed.

Funny now, isn't it? I mean, it's not funny that he has leukemia, but the comment is funny because the kid has a great attitude. There are some truly great people in this earth, and a lot of them are your next-door neighbors and co-workers. You cannot help but look at the pictures on his mom's blog and not feel better about life on earth in general. That's just how it is.

Back in the hospital when we were less freezing and less exhausted
By the way, they are taking donations for Tucker. My experience is that making donations like that makes me feel better than a good movie, so if a movie is worth $15 or more for you and your buddy to go, then helping a kid like that is worth more.

Ok, i just went and donated $15. This is my pitch to ask you to do the same. No, wait ... this is my pitch to get you to buy one of Tucker's tags, which are $13. He only keeps $10 that way, but maybe the tag will get someone else to give.

Some of you gave great donations for Jerry's dentist bill, and I got near to $500. The dentist also agreed to drop the price by about $1000, and they're doing a bake sale back home. Thank you for your help!

Also, this blog isn't about donations, and my friends know my focus is not money. But because my focus is not money, I know that giving feels great. I'm sorry so many charlatans, especially religious ones whom God will reap the rewards of their evil behavior, use donation requests to extort money for grandiose living, self-glorification, and shameless temples. Giving is supposed to feel great and be delightful. It ought to give us great joy to contribute to organizations like the Shriners, St. Jude's Children's Hospital, missionaries we trust, etc.

Ok, say back to David Haas' blog. My favorite recent post on his blog is called "Warrior Dash." I mean, how could it not be. He discusses a type of 5K race that you know I'd loved to have tried (a perfect Nathan and Abby type race), and he gives tribute to people with cancer who are going through treatments. Hey, that's me all the way through.

Friday, October 7, 2011

October 6-7: Qualifying for Transplant

Whew, what a day!

Today I had a chest x-ray, a bone density scan, an EKG, and echocardiogram, and a bone marrow biopsy. Each one had an associated waiting period and travel through a very large hospital.

Pulmonary (lung) function test
Oh, and I found out I may have prostate cancer.

What's funny is that if I had been told that my PSA (Prostate-Specific Antigen) had jumped from 4.0 to 13.3 a few months ago, I would have panicked ... at least a little. Today I thought, "Oh, really?" Prostate cancer is hardly something to worry about today.

It does seem like cancer comes in twos in our house.

As many of you know, I am part of a Christian community. I live in a very large double-wide mobile home with another family. We have an outbuilding in which a single mother and her daughter stay as well. In fact, my wife and I moved our bedroom to my parents' RV a few weeks before my leukemia diagnosis. (Since a couple weeks after the diagnosis, we've been living in Nashville.)

That single mom, Jenn, was diagnosed with melanoma (a malignant skin cancer) in March. They removed the melanoma and a couple lymph glands, but in May some mild seizures (only tremors at that point) led to a diagnosis of brain cancer (an astrocytoma). The doctors said the two cancers were unrelated.


Jenn was only 37, but she handled the news with remarkable grace. She had as much of the brain tumor as possible removed, and then they radiated the microscopic tendrils that were left. She lost hair, lost balance, and had to go through physical therapy, all with a cheerful (and humorous) attitude and a smile. She began my training in how to take cancer news.

They can't really do anything else for her. I think we pray either that it goes away or that it stays stable for a few years until cancer researchers find a cure. Please join us praying for Jenn, too.

Anyway, she had two cancers, one found in March and one in May. It's possible I'm going to have two as well.

Prostate cancers, however, are incredibly misunderstood, at least by everyone I know. I found some information from the American Cancer Society that seems like awful big news to me, and I sure wish I'd been told about it.

But let's save that for a few paragraphs from here, and let's talk about the term myeloablative, and why it can be painful to be healthy.

Myeloablative or Non-myeloablative: Intense and Not So Intense

The paperwork I saw Tuesday said that I was scheduled for a "reduced intensity" transplant. Dr. Strickland had told me that might be the case. Apparently, the cutoff for a full intensity or reduced intensity preparation for the transplant is age 50. I am 50, so I'm in the "iffy" range.

... Okay, now it's the next day. I got interrupted, and I never came back to this blog. I read some of End of the Spear (I have a signed copy!!!) to my kids, which I highly recommend, and then we watched the movie, The Eagle, together.

So now I'm sitting in the waiting room of the "pulmonary/neurodiagnostics" section of the hospital trying to catch up. It's now October 7.

Anyway, Dr. Jagasian came in yesterday and explained what we all know, that all 50-year-olds are not the some. He said, "There are 50-year-olds who walk in looking great, and then there's another that comes in on oxygen in a wheelchair. Not the same."

Results from the pulmonary function test

Anyway, I look healthy enough to consider a fully ablative transplant, which I'll explain in a second, but first let me tell you why it matters.

Apparently, some leukemias stay in the blood, but others learn how to escape. The tumors on my back, clavicle, and lip prove that my leukemia knew how to escape the blood. Also, I had a couple swollen lymph nodes and a swollen spleen.

(And now I'm at home)

All these things mean he'd prefer to do a full intensity "conditioning regimen." This provides the best opportunity to get all the cancer cells no matter where they might be hiding out. As the nurse explained, with a full intensity conditioning regimen, the chemo and the radiation do all or almost all the cancer killing. With a reduced intensity regimen, the transplanted cells have to participate in killing the leukemia as well as replacing the entire blood system.

The full and reduced intensity regimens are called myeloablative and non-myeloablative. The terms have to do with whether they ablate, completely destroy, the bone marrow or whether they just partially ablate it. If they partially ablate it, the new stem cells have to outcompete what's left of my bone marrow besides the other things they have to do.

So Monday they're having a meeting. At the meeting, they'll go over the results from all my tests. After the meeting, Nurse works will email me to let me know whether the doctors opted for fully ablative or not.

I already told them I vote for going for it.

The difference is that one of the two chemotherapy drugs will be doubled, and I will receive six times the radiation. That will result in a significantly increased amount of nausea and pain, but it seems better than having the leukemia come back. At least to me. (Gosh, you know, I think there's a part of me that wants to prove how tough I am, too. Emotions may make life worth living, but they're stupid.)

Prostate Cancers

Like I said, it's now tomorrow compared to when I began this blog. Since I mentioned that I had big news from the American Cancer Society, I've gotten very similar news from the radiology oncology doctor I saw today and from Yahoo News.

Between tests, waiting
The radiology oncology doctor (i.e., he works on radiation in relation to cancer) said that the test for prostate cancer, called the PSA test, has proven to be possibly more trouble than it's worth. It's a great test for finding cancer, but 70% of the cancers that it finds shouldn't be treated, and the test can't tell you which is which!

So the question is, should doctors keep finding these cancers, then treating all of them, resulting in incontinence (i.e., you can't control when you urinate), infections, and even death, or should they wait until the cancer causes some other problem, which means that some cancers will kill the patient, though that could have been prevented with treatment.

Which is worse, the cancer or the treatment?

The reason that question can be asked is because so many prostate cancers are simply not a problem. They will slowly grow until the man dies of old age.

Just today, of all days, a government task force advised men not to be screened for prostate cancer!

The American Cancer Society, says the article, is holding their tongue on approving that decision, instead saying that men ought to decide for themselves. Nonetheless, they did say this (quoting from the article I just linked):

"We have been long concerned, and it has been apparent for some years, that some supporters of prostate cancer screening have overstated, exaggerated and in some cases misled men about the evidence supporting its effectiveness," said Dr. Otis Brawley of the American Cancer Society in a statement. "We need balanced, truthful information to be made widely available to physicians and patients when making important health decisions."

Okay, so statement #1 is that proponents of prostate cancer screening can't be trusted. Statement #2 comes from the article I mentioned yesterday, when I started this blog:

Because of an elevated PSA level, some men may be diagnosed with a prostate cancer that they would have never even known about at all. It would never have lead to their death or even caused any symptoms. But they may still be treated with either surgery or radiation, either because the doctor can't be sure how aggressive (fast growing and fast spreading) the cancer might be, or because the men are uncomfortable not having any treatment. Treatments like surgery and radiation can have side effects that may seriously affect a man's quality of life. These treatments can lead to urinary, bowel, and/or sexual problems. In some men these problems may be minimal and/or short-term, but for others these problems can be severe and long-lasting (or even permanent).

The article goes on to say:

Studies are being done to try to figure out if early detection tests for prostate cancer in large groups of men will lower the prostate cancer death rate. The most recent results from 2 large studies were conflicting, and didn't offer clear answers.

Now this article isn't saying that it's a bad idea to screen for prostate cancer. They're saying the results were "conflicting," but is this what you were told about prostate cancer screening? Or were you told, "If you're over 50, you definitely should get it done"?

Personally, I am always of the position that if the doctors aren't sure that messing with something will help, then they need to leave people alone. "You never know" is not a good enough reason to spend thousands of dollars, risk incontinence and infection, and lose who knows how much time to treatment and sleep to worry. It's just not, and I'm a little offended that this sort of news hasn't already been trumpeted.

On the other hand, my PSA went from 4 to 13, which is a huge jump, big enough to cause the radiology oncology doctor to raise his eyebrows. I guess there are some people who ought to be checked further.