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.

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 35^o 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.

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.

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!