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.

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.

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.

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.

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.