July 28, 2012: Just Chatting

Apparently even after 17 years in the Tennessee countryside, I'm still completely suburban.

Yesterday my daughter was babysitting a couple small children, and she told them, "go out back and get all the red tomatoes."

Rather reacting like this was a perfectly normal thing to do—for, after all, tomatoes grow on plants, and we have tomato plants in our back yard—I flinched inside. We don't eat food from the yard! Dogs and ants eat off the ground, not us. We get our food from nice, clean places like grocery stores and restaurants.

The feeling only lasted a moment, and I didn't actually say anything so silly to my daughter, but it reminded me how warped my view of life can get if I don't regularly update my mind with the truth.

So I haven't been feeling very well the last couple days again. I tried a liquid diet for three days, making sure to include milk, multiple bottles of Ensure, and some tablespoonfuls of olive and coconut oil to make sure to keep my calories up. I was hoping to give my intestines and hemorrhoids a rest.

That was a colossal failure. Didn't work at all. My body treated Ensure and the oil like food, and I was in the bathroom every bit as much as before.

So last night I gave up and had an apple, knowing that would provide some fiber for bulk after three days of liquids. I felt fine before I had it, but I threw it up in less than five minutes. I still felt pretty good, so I had one of those pre-wrapped, store-bought ice cream cones instead.

I don't think it came off a plant in the back yard.

Learning Some Lessons

I don't know if the following will make any sense or do anything for you. I'm just telling you what I've learned the last couple days, which may or may not apply to you, help you, or interest you.

Yesterday, I was weak, tired, had terrible gas pains, plus the hemorrhoids were bad. I could thing of LOTS of things I could be doing rather than laying in bed, but I decided it was time to give in. I slept till 11:45 a.m.

When I awoke, I curled up in the blankets, and deep inside I curled up inside of God, too. I felt his presence, I felt safe, and I realized that one more time I'd gone back to running my own life. My "Entrepreneurial ADD" was in full swing, as I had 15 things on my plate at one time, all the time. (Sign for the top of the new building ... Finish writing up the lease to buy agreement ... How many tables exactly do we have in there ... Have to get the car back from the mechanic ... Need to do a Through the Bible blog ... Need to do a Thrilled to Death blog [this one] ... Email from an atheist I really want to answer has been sitting for two weeks ... get one son to get his tax forms caught up and work on a corporate tax return with another son ... update the progress blog on the new business so everyone else knows what's been finished ... )

I promised myself in the hospital I would never do that to myself again.

I lied.

Yesterday I repented, and I've been asking God what to do in everything. It's a sick day today, too. In everything I've done, I'm doing one thing at a time. I can feel the Spirit urging me, "Don't pick that book up; you only have one task in front of you, the Thrilled to Death blog. And it's done when it's done, not in a hurry to get to the next thing."

Earlier today, I put something down I was working on—in bed, on a "sick day"—because my dad came in to visit. I took the excellent opportunity to visit, and then I went back to what I was doing.

Next is to get a couple Martin Luther quotes onto my Christian History web site, and after that, outline and prep an early Christian teaching on the church. That's the most I'll get to do today. The videos on apostolic succession—Overview, Clement of Rome, Ignatius, Irenaeus, Tertullian, and Cyprian—is sadly going to have to wait, but that's better than stressing over when to do them.

Step by step, always stopping to check if I feel at peace that I'm devoting my time to things that are worth devoting my time to, never letting my heart latch onto these things, but seeking to present myself properly to my Father in heaven as a living sacrifice. It is the route to the most incredible, perfect peace that carries one through year-long leukemia battles and the rough days of recovery.

Can any of you relate to this at all? Or am I the only one that gets so scattered and busy that I lose sight of everything else?

I'm not doing it anymore.

"Thou wilt keep him in perfect peace whose mind is stayed on you" (Is. 26:3).

Six Months and Two Days

Just a progress report. I wrote a lot of this in a comment on Tamara's blog. I guess I'm almost a hundred days ahead of her. In some ways, she's doing a lot better than I was doing, but her headaches are something I didn't have to deal with. Feel free to pray for her.

I was at 6 months day before yesterday. Last week I had a day where I fell asleep at every turn, so that I basically slept from a Monday evening until Wednesday morning. It came out of the blue, unknown cause. I usually don't need any nap at all at this point.

I'm weaning off the one steroid I'm taking; one month left. Then I start the Tacrolimus taper. That's the only immunosuppressive I'm taking, and I'm not taking much of it. It builds up in my blood pretty fast. In fact, I think almost all medicines work on me very effectively even in small doses.

I still have ongoing hemorrhoid problems. If I could cure them, I could exercise better and get out more. I've had advice from more than one doctor, more than one nurse practitioner, more than one nurse, and more than one fellow sufferer, so I think I've tried about everything at this point. Most of the advice helps, but the 'rhoids always come back quickly.

Still, I can't complain too much. My energy is very good for a transplant patient, and I can probably walk as far as a lot of "healthy" 50-year-olds.

In fact, I'm already back to overdoing it. I'm back in the middle of church life, going to meetings, talking to people, and I even did a teaching on "the faith once delivered to the saints" over Skype for friends in California Monday night. I'm playing catch-up at my warehouse business, and got a great idea for a new business to put in the empty building my church owns and makes payments on, but which has been sitting empty the majority of the time we owned it. So I'm not just trying to oversee a business, but I'm starting a new one, too!

Well, let's make this a little longer and tell you a funny story.

Monday I had the teaching (over Skype to California) scheduled for 9:00 p.m. Tennessee time. I went car shopping with my wife that afternoon, in southeast Missouri, about 2 hours and 15 minutes away. I went that far because I found a perfect lot for a guy like me. The used car lot sold all cars under $5,000, and they had several under $2,000, including a 1997 Buick LeSabre.

Now understand, I bought a 1997 Buick LeSabre back in 2003 (or maybe 2004). I bought it at an auction, and I learned there that no one wants to drive a Buick like that except African American young men and Caucasian old men. All Buick LeSabre drivers, or almost all, have either black skin or grey hair. Maybe there's a rule out there requiring this (#joke).

Anyway, because almost none of the people at this auction wanted the Buick, I got it for $1700. It had 174,000 miles on it, but it was in excellent condition.

Last year, when I went in the hospital, I gave that car to my son. I had driven it 8 years and put almost 170,000 additional miles on it. I drove it to California and back when it had almost 310,000 miles on it. Completely reliable, and it got 28 miles to the gallon on the highway, even at 75 MPH.

I had to pay $1950 for this Buick LeSabre. It has 165,000 miles on it. It runs great, and I love the gas mileage, power, and room.

Okay, enough about that. It turned out that the owners of the used car lot, a very southern woman and a Pakistani man, were very chatty. So we had trouble even looking at cars because we were having such a good time talking.

Because of this, we didn't leave the car lot until almost 8:00 p.m. There was no way to get back to our house by 9:00 for the scheduled teaching.

So we opted for Dyersburg.

There we stopped at a Burger King that had wi-fi. It wasn't working. We drove from there, following Google maps on my iPhone, which seems to be getting worse, not better, to find a McDonald's, which always has free internet. Google maps said there were three McDonald's on one block. That was weird, and as it turned out the only McDonald's was inside WalMart.

To put the final nail in the coffin, I got a great phone signal in Dyersburg, but it was all Edge. No 3G! Selmer is smaller than Dyersburg, and we have 4G!

I can't Skype over an Edge network.

By then, it was very close to 9:00, so I gave up and drove to the nearest place we could get a bite to eat quickly. I found a Dairy Queen, and we went in.

I asked if they had internet, and they told me that if I sat in the back corner of the restaurant, I could probably pick up the high school's internet.

It turned out I could, but weird things were happening when I tried. My computer was just randomly disconnecting. I tried restarting it (thank God for 30-second MacBook restarts; a Windows computer would have taken up to 5 minutes), and it worked!

I opened Skype at 9 p.m. sharp.

At that point the Dairy Queen had two other people in it. No big deal. We were in the back corner, and I would talk quietly. DQ closes at 10 p.m. in Dyersburg, so it was really quiet in there.

My friends got on, but they were still cleaning up from dinner, so I chatted with a couple of them while we waited for cleanup to finish.

Finally, they were ready. I got ready to start, and a ridiculously loud male voice announced from the entry door, "Hey, you better get ready! Got a whole baseball team coming in."

Yeah, it was. About 30 people came in, and they were the loudest, most inconsiderate batch of people I've ever met in the South.

I pressed on, anyway, occasionally having to stop to laugh at the absurd situation.

It turned out that it was the birthday of a lady in the party. So about 9:45 everyone in the restaurant sang a rousing round of "Happy Birthday to You" while I, my wife, and our friends in California laughed even more.

My wife told me afterward that the guys at the table next to us, who made absolutely no effort to keep their conversations at even a normal sound level, made occasional mocking comments about the things I was teaching. Ah, well. They did a lot worse things to Jesus and to many of his disciples through the centuries. I keep thinking that someone nearby enough to hear me—I was trying to be polite and keep my conversation as quiet as practically possible—was meant to hear the things that were taught. We talked about unity, about the essentials of the faith that history and the Scriptures say the apostles gave to the church, and about the real standard of unity, which is the Spirit of God inside us and our obedience to Jesus.

Hmm. I always find a way to turn a short post into a long one. I have to go. Lots of other stuff to do. Thank you, everyone, for sticking with me over this last year.

A friend suggested two tablespoons of oil—coconut or olive—with every meal to help with the hemorrhoids. I can use the extra calories anyway, so I'm definitely going to try it. I'll let you know how that works.

Getting Stronger ... With Setbacks

In a couple weeks it will be six months since my transplant. If I had a desk job I had to be at 40 hours per week, I could do that, but I would have a lot of sick days—2 or 3 per month plus the monthly day-long trip to Nashville for checkup. I also would not be able to guarantee that I could come in at the same time every morning. There were a number of times in June that between an upset stomach and hemorrhoids, I wasn't fit for the public until 10 a.m.

I wrote that to add my story to the several I've read about how quickly one can go back to work after a bone marrow transplant. The best I've heard is a guy who was back to work full-time after two months!! Another man told me he couldn't work full-time for five years, and then he relapsed with a different form of blood cancer.

My job's not like that, though. I'm the boss again, so I get to set my own hours, and I can do a lot of work from home. Some days I'm up early, and I get in 12 hours of research, writing, and being available by computer and phone for the folks at work and for the church. Sometimes, I need a nap by mid-day.

The last couple days were rough. I'm weaning off of steroids. The only steroid I'm taking is Prednizone. I was taking 30 mg, and they weaned me down to 10 mg. Then they got me off Cellcept, an immunosuppressive. Now that I'm done with that (since June 18), they had me drop to 7.5 mg on the Prednizone.

At the same time, they had me lower the only other medicine that suppresses my immune system because there was too much of it in my blood.

The result was that Tuesday and Wednesday of this week reminded me of February in the hospital. I went down hard. I slept from Monday night at 7 pm until 5 pm Wednesday morning with only a few waking hours. I was exhausted, and I felt as purposeless as I had in the bad days in the hospital.

Wednesday morning, I decided to get up and go to "water day" with the other folks in my community. I tried sleeping all day Tuesday, and that didn't help, so I just pressed on Wednesday morning. I carried chairs down to our big 60'x90' tent, and I watched kids (and adults) shoot each other with water guns while I chatted with friends and walked around a bit to try to get my energy up.

The result? I practically collapsed by noon and slept hard and deep for three hours.

Today, I got up feeling no better, but I had a Christian writers guild that I wanted to go to in Collierville, about and hour and a half from my home. I was driving with a good friend who is the manager of my business and semi-officially the head elder of our church. I was really looking forward to the writers guild and to the time spent with my friend. So I got up and went.

I'm not sure what happened. I had a delightful time, and my energy grew the whole day long. I'm typing this after 11 pm, and I feel as good as I've felt since I've been back home.

I do have to say the last couple days got me to slow down, focus on God again, and wind up feeling really at peace and under grace. Only two months, and I had let myself get really busy and somewhat tense again! I promised myself I'd never return to that kind of lifestyle after I got out of the hospital.

I should know better than to trust my well-meant promises to myself.

But grace came in the form of a couple really rough days and, once again, in the form of my beautiful and amazing wife. She gathered up my whole entire stack of papers from work, called my secretary, organized all the paperwork with her, and delegated some ridiculously large amount of my to do list to other people.

That was the paperwork from my current business. I'm also starting another one! For some reason, for the first time in my life I came up with a really great and necessary business idea, got lots of other people involved, and created a lot of very enjoyable work for myself. My wife helped me with that, too, finding me a great main person to make sure the business gets started properly (for no pay at all to start), and arranging several meetings with key people who can help me.

Okay, so that's what's happening with me nowadays.

Physically, the hemorrhoids (sorry for bringing those up, but they've been a central part of my life for a couple months) have limited how much I could work on running and walking. I have no problem walking over a mile, though, even if there are hills, and I can now do real, proper pushups. A proper pushup for me is to go down far enough that my chest would touch a fist if someone made a fist on the ground below my chest. That's how the military taught me to do a pushup. Two weeks ago, or maybe even last week, I was excited to finally get to where I could do one of those.

So I'm progressing, though I'm still pretty scrawny at 145 pounds fully clothed and in my shoes. I have some loose skin near my elbows on my upper arm that let me know my arms haven't grown back to the size they were before the transplant. Still, progress is progress.

Just thought I'd check in. God bless you all!

Day 140-something: The Adventure

Cyndi of The Voice: A Christian Cancer Blog put a comment on this site asking me a couple questions about my leukemia experience. I wrote her back, and I didn't want to lose the writing, so I'm posting it here.

Thanks for asking the question, Cyndi. It's so much easier to write about something when there's a question to be answered!

First, I agree with Steve from your "How should a Christian die?" post. Isaiah 57:1-2 has always given me comfort. Sometimes God removes a saint, and it's a gift to the saint. I always think of great ministers like Keith Green and missionaries like Jim Elliott, both of whom died young.

When I had to "number my days" (Ps. 90:12), the day I received my diagnosis of leukemia, I didn't panic or pray a prayer of healing. I thought, "Well, now Paul, you finally get to know whether you really believe all the things you've been saying. Do all things work together for good for those who love God and are called for his purposes? Or will you make leukemia an exception."

My prayer of faith was: "I believe this is good. Tell me what to do."

Maybe I'm crazy as well as believing. Within five minutes I was actually pretty excited. I've never had a potentially fatal disease before, especially one that carried a 25% or less survival rate. (That's probably increased to close to 50% over the last five years, but I don't have data that recent.)

As soon as I settled in my mind that I believed and that I was ready to head towards eternity or remain here, I felt God say to me that I wouldn't die. After that, I never wondered.

When they talked about sending me to ICU if my blood pressure kept dropping, when they gave me yellow socks to indicate I was a falling risk who needed help every time he got out of bed, when I lost all ability and energy to hope, move, eat, or feel anything, yet I never wondered. With no strength to rejoice or feel the prayers, I offered prayers of praise to God laying in my hospital bed.

And why not? What a grand adventure! I met people much stronger than I am, enduring much worse suffering than I was. I met caring doctors and nurses with hope, energy, and conviction who gave themselves for my life. I met strangers receiving no pay at all who dropped in just to cheer me on. I watched my wife lay down her entire life to devote herself to caring for me for most of ten months straight.

I met people all over the world, including you, Cyndi, and I was inspired, encouraged, made hopeful, loved, and obtained a rest I never could have had if I had not gone through what I went through.

Better yet, I was able to encourage others. I am quite certain I helped pull a couple people out of a pit of despair and give hope. I watched one of them do the same for someone else. I wrote web pages to try to correct the awful, dire prognoses given on the internet about "Blastic Plasmacytoid Dendritic Cell Neoplasm," and I received several emails thanking me for giving them up-to-date, hopeful information. I received dozens of emails thanking me for the inspiration and encouragement people received through my blog. I talked at least two people into getting a bone marrow transplant rather than waiting for their BPDCN to relapse, as it almost always does, and dying.

Those things are exciting. I got to experience a whole new world, bless people, give honor to God through Jesus Christ, and, on top of that, to go through trials, which produce patience so that I can have hope of being perfect and complete, lacking nothing, when I appear before God! (Jam. 1:2-4) How exciting is that!

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

Day a Lot

That title may not make much sense if you haven't been reading my blog or others like it, but when you've had a stem cell transplant your days are, literally, numbered.

I've been titling a lot of these posts "Day 7" and "Day 36" and stuff like that, but now I think we're up in the 140's. June 17 will be 5 months (2 with 31 days, one with 29 days, so 151 days at that point) since the transplant. I wasn't sure what day today was, so I just called it Day a Lot.

My most interesting side effect at this point is that the chemo lines on my fingernails have moved to the tip, and I have jagged, not very well attached, fingernail tips.

What are chemo lines?

These:

And when those chemo lines get to the ends of your fingers they do this:

Believe it or not, I couldn't clip off even the patch on that middle finger that seems loose. It was attached, but it was flimsy, much thinner than a fingernail ought to be. And all that other jagged stuff just broke apart like that. Everything is cut to the quick, and the end of that nail hurt all the way across because some of the exposed skin is usually attached to fingernail.

The top finger there is my left index finger. That picture was from a couple weeks ago. It's chemo line has made it to the end now, and ...

Sorry the picture's not better. My right thumb chemo line has grown out; it looks like this:

I hope I haven't bored you with the pictures. It's on my mind because my left index finger and right thumb hurt every time I stick them in a pocket to retrieve keys or a wallet or something. The jagged edges catch on anything mesh and on my socks when I put them on my feet in the morning.

I clip and file my nails every other day to keep the jagged edges down. New little burrs pop up every day. The lines on my thumbs were so big and so ragged that I had to start filing them when they were only halfway up my thumb.

I'm figuring one more week, though, and they'll have all grown out.

From what I understand, when they give me chemotherapy for leukemia, it kills all the fast-growing cells. Our fingernails grow from the bottom up, so when I received chemotherapy in January, the cells at the base of my nails died. Once my nails got back to growing (which took a while, like my hair), there was a line in my fingernail.

What's funny is I've never gotten a chemo line on my pinkies. I had the chemo lines after my first round of chemo, too, and that was only on my thumbs, index, and middle fingers. So maybe the smaller fingers grow their nails slower, and the pinky nail doesn't qualify as fast-growing by chemotherapy standards.

Okay, enough about fingernails.

For those of you going through the same thing, this is day 140-something for me, and usually I can be up all day working (at a computer, not manual labor!). If I do that two or three days in a row, though, I sometimes find that I have no energy on the day after that and I need a long nap ... or two naps.

My physical recovery is a little hindered by hemorrhoids. I had two good days walking and running last week, but I was bleeding the following morning when I went to the bathroom.

I still exercise every day. I have a rubber band--a long, thick blue one--that I use pretty much every day. It's made for yoga students, and I believe they can be bought at WalMart, Target, and stores like that.  They're real inexpensive, less than $10 for a set of three of varying tension. I can do exercises with the band even when the hemorrhoids are acting up.

As you can see, I'm still skinny, but I no longer look like I live in a refugee camp.

I've found that doing exercises with the yoga band is really good at bringing out the veins  on my forearms, which helps reduce the possibility of being stuck two or three times when the lab draws blood, which is obviously a regular occurrence in my life. I recommend twisting that band around daily for those who have to have blood drawn regularly.

In order to exercise my legs, I do more intense activities like deep knee bends and calf raises. I can do just a couple sets of those, and it works my legs well without a lot of walking, which is real bad on the hemorrhoids.

I found a great exercise, too, for the back of my legs (hamstrings) and buttocks. Usually, walking or running would be the best thing for that, but I'm limited how much I can do that until my body's more back to normal and I don't have hemorrhoids so often. So now, I lie on the floor on my back with my knees bent. I then lift my hips off the ground so that only my feet and shoulders are touching, and I either hold it or do a number of repetitions. One or two reps seems real easy, but it doesn't take long for me to be able to feel the work involved.

For those of you in a more normal condition, you can do that same exercise laying on your back with your calves on an exercise ball. You lift your hips pulling your feet down onto the ball so your shoulders are on the ground and your feet planted on the ball. It works your balancing muscles, your hamstrings, your buttocks, and your lower back. Get good at it, and you'll have done one of the best things you can do to guard your lower back against strains and pain.

I have got to publish that booklet or make videos on the things I've learned about preventative back care! Good information is out there, but it's so hard to find it accumulated in one place without having unnecessary medications or equipment being hard sold to you.

I am an affiliate for julstro.com, which is a fabulous muscle therapy site, and I recommend her books, but she doesn't cover the exercises. She does have a couple extremely effective stretches, and she explains exactly why they're so effective. (You may be able to find that on her site for free, but I know any of the books in her "Pain Free" series would have the stretches in them, too.)

Stay tuned because sometime this summer, I am going to get the exercises out.

By the way, I'm a fastidious researcher. The exercises are based on 2 to 3 years of reading articles by professional coaches and physical therapists in the journal Peak Performance, on 2 years of research while my wife had a terrible case of sciatica (that had to be resolved with a back operation because it was a badly herniated disk), and 10 years now of trying the exercises and stretches out on myself and anyone who would listen to my advice (which is a lot of people; I'm told I inspire trust when I talk to people). When people who write advice on back pain say things about their techniques or latest and greatest pill, I look it up on the Pubmed database to see if there's any real research on it.

So I'm advertising something here that's going to be free (except the booklet, if I do it that way, which will cost some minimal amount). I just need a little time, which seems to be in short supply.

Until then, that exercise I mentioned above is a good start. Research says that it is not a strong back that is least prone to being injured, nor even a flexible back, but a back with good muscle endurance.

Maybe on the next blog I do, I'll explain the iliopsoas muscle so you can have a taste of useful—no, critically important—things to know about your back. Ever wonder why you've been told not to do situps with your legs straight like we older guys did when we were kids? I'll explain that, and I'll also explain when to stop your leg lifts, if you do them, because the reasoning is all the same.