Friday, June 15, 2012

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)

Wednesday, June 13, 2012

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.
















Wednesday, May 30, 2012

Video to Share

I wrote a blog about an hour ago. Don't forget to scroll down and read that if you want to hear updated news now that I'm back home.

I just found this (my thanks to news.Discovery.com for sharing it). I'm not in touch with pop music, so I'd never heard the Kelly Clarkson song that they used to make this music video. Let me give you Discovery's introduction to it:

What's stronger than a pop star singing about how she can overcome bad interpersonal relationships? Some strong children at the Seattle Children's Hospital singing about how they can overcome their relationship with what ails them.

Testing Out Life at Home

I have some pictures today, but unfortunately none of what would have been the best picture of all: me rolling and sprawling as I tried to run down the first base line in a softball game with friends.

It's not like I didn't know I can't run fast. I can jog a little. I could jog all the way around the bases at a 13 or 14 minute per mile pace (that's very slow). I only intended to jog. After all, this was just fooling around with friends.

We've got stuff leaning against the house because we're still moving in, but the hydrangea bushes and the Tennessee spring are beautiful.

But as soon as I hit the ball, my subconscious took over. After hundreds and hundreds of baseball and softball games throughout my life, my body didn't need any input from my conscious mind. It knew just what to do, leaned toward first base, and started pumping my legs.

Or tried to.

I only got about three steps down the line before my conscious mind caught up and realized that I had no idea where my feet were in relation to my body. All I knew is that my legs were somewhere behind me, too far back to have any hope of staying upright.

I imagine it probably scared everyone to have the leukemia patient take a dive down the first base line, but we were playing in a grass field. It was soft, I rolled, and it didn't hurt at all.

Worse, I can only imagine how I looked in my highly unusual softball garb. The blue jeans were no problem, but I bought several UV-protective long sleeve shirts from Duluth Trading Company. I wear them because they're made to be cool even in summer. Excellent shirts, but they're still somewhat new, and they look like dress shirts. Then, when I'm outside, I wear a hat with hanging sides that can wrap around my face and velcro closed. Basically, only my hands are exposed to the sun, and I put SPF 50 sunblock on them.

So I look a bit like a desert nomad dressing up for a casual dinner party when I'm outside wearing the hat. I will get you a picture of that.

The Fun Part of Life at Home

There's some fun things happening today.

My daughter just finished conducting a "Dr. Seuss party" for some of the children in Rose Creek Village. She loves Dr. Seuss books, so she brought children over, made them some drinks, and read Dr. Seuss books to them under the willow tree in the back yard.

Janelle, the reader

The children and the books under the willow tree

Sam wants in on the party!

In the meantime, my son Manuha was experimenting--literally--with a box of old chemistry supplies that was given to him.



My wife took that picture. Unfortunately, when I tried to take a picture, this is what happened ...


I couldn't get my hands to stop shaking. I'm not sure which medication makes my hands shake, but I was doing pretty good for about 3 weeks. The last week or so, though, I'm  back to shaking badly enough have difficulty writing. Good thing I'm usually typing!

The shaky hands don't bother me. Those will go away as I wean off medicine. I understand Tacrolimus, one of the immunosuppressives, can commonly cause tremors, and I won't be off that until at least October, and only if the taper off of Cellcept goes will first. We'll see.

Have a good day, y'all!






Wednesday, May 23, 2012

Are You Listening?

A directly theological post is out of the ordinary for this blog, but surely many leukemia and cancer patients, whether they're Christian or just have Christian friends, have repeatedly run into the issue I'm going to address. I saw an article today from David Wilkerson, a great man of God and author of The Cross and the Switchblade, and it said something that made me think, "Okay, today is the day to write this post."

David Wilkerson is a great man of God who risked his life to bring the Gospel to inner city gangs in New York in the 1960's. He founded Teen Challenge, perhaps the most successful rehab ministry for drug addicts that there ever was. He started Times Square Church, which still attracts thousands of people each week.

But I think he got off track with his emphasis on prophecy and the judgment of the US over the last twenty to thirty years of his life. Even his book, The Prophecy, which was trumpeted by Christians as an amazing prediction of the US attack on Kuwait, wasn't really. I read the book. The places where it matched Kuwait were pretty general, and a lot of details didn't match at all.

Anyway, the article I saw today, which obviously wasn't written today since he went to be with the Lord last year, said ...

... the Bible clearly outlines what the church of Jesus
Christ will be like just prior to His coming. (World Challenge)

No, it doesn't. At least not clearly.

The first time Jesus came, no one—not one single person, righteous or unrighteous—was able to accurately predict what the coming of the Messiah would be like. End time prophecies are not meant to be figured out in advance. They are to give us hope and help us see what is happening as the events unfold.

That is why some Christians say the church will be in great apostasy when Jesus returns, and others, like David Wilkerson, say that the church will have more power than the apostolic churches of the first and second centuries. The Bible's not clear on that subject, and it won't be until the events actually transpire, just as was true during Jesus' first coming.

What does this have to do with leukemia and cancer patients?

A friend wrote on Facebook about "standing on the Word of God" concerning a prayer for healing for someone. What that meant, however, is that they were standing on one minority interpretation of the Bible, believing that God always wants to heal the sick or injured.

There's some biblical problems with that interpretation that at least make it doubtful. More importantly, though, it's obviously not true in real life. It doesn't work. No faith healers are going through hospitals healing everyone and reducing health care costs in the US by billions of dollars. They're not even healing many and reducing health care costs by millions of dollars.

God has not promised to heal everyone. Even the apostle Paul "left Trophimus in Miletus sick" (2 Tim. 4:20).

The Word of God I'd like to see my friend stand on is the one that comes daily to us who walk by the Spirit of God and by which we live (Matt. 4:4). Standing on that Word does produce miracles.

Many years ago my 2-year-old nephew got an eye infection that took all the sight from one of his eyes and was slowly taking sight from the other. I was in Germany at the time because I was in the Air Force, and I got a letter from my sister about the problem, which had been progressing for about a year and a half. The doctors didn't know what it was or what to do about it, and she was writing to ask us to pray.

I got together with two friends, and we prayed, and the presence of God fell on us. As we prayed, that burden I had for my nephew slowly lifted until I was filled with joy, and I knew that God had heard our prayer.

Despite that, I told my friends after praying that I just couldn't shake all the burden. It was like there was just a little bit left, and I couldn't get complete peace. It was sort of an odd feeling that I hadn't experienced before.

Two weeks later I got another letter from my sister. Mail to Germany took a week, so she had mailed it a week after we prayed. All my nephew's vision was restored. The infection had backed way off, and there was just a little bit left in one eye, but the doctors thought they could deal with that (and they did).

I've been told that God always answers prayer and that sometimes the answer is no. That's true, but we ought not to have to wait in order to know the answer is no. We ought to know that the burden didn't lift, or we ought to have been directed to pray something different. We should be aware that we have not successfully gotten God to change the situation we're praying about.

Sometimes that happens because of a lack of faith. Or it can happen because God wants more effort from us in prayer, and we need to continue praying. It is, after all, the effective fervent prayer of a righteous man that can accomplish much (Jam. 5:16). Maybe we need to fast. Or maybe we need to listen and hear God say, "I'm taking this saint home. Don't try to stop him. Pray for peace for his family."

I went through this last year confident that I wasn't going to die, but it wasn't because I interpreted the Bible to mean that anyone with faith can be healed because "by his stripes we are healed" (Is. 53:5). It was because I believed God had told me and others that I wasn't going to die from this leukemia.

I will die someday. Perhaps it will be in my sleep from old age, and perhaps it will be from some disease or accident. Either way, I don't expect to be pleading and begging God for healing. I expect to know, and that my friends will know, that it is time for me to move on to a life that is immortal and painless, assuming I keep the faith to the end.

I believe in miracles. I also believe that in most cases, we should know whether a miracle is coming.

We should labor in prayer. While there's no time in a day to labor in prayer over everything that we might want to pray about, there are issues we should labor in prayer about until we receive the Word of God. From the Word of God we can gain comfort in advance of the healing, knowing it will come—because we have the real Word of God, not just a Bible interpretation based on our own opinion—or we can gain comfort knowing that God has a different plan, painful as that plan might be.

I don't know why things are the way they are. I simply pay attention to what works. Like most other theological issues, nothing I said in this post is without exception. Sometimes a quick, perfunctory prayer produces amazing results.

What I want to deliver us from is "standing on the Word of God" only to have nothing supernatural happen 19 times out of 20 (and I'm being generous here). What most people mean when they say that is that they are "standing on a Bible interpretation I was taught." God is not interested in backing up that kind of faith when he has called us to live by every word that is currently proceeding from the mouth of God (Matt. 4:4).

Jesus' most strenuous opponents were the Pharisees. To them he said ...

You search the Scriptures because you think you have life in them, but they testify of me. Yet you refuse to come to me so that you might have life. (Jn. 5:39-40)

Christians have to be those who live in the New Covenant, the basis of which is a real and spiritual relationship with God ...

Now we are delivered from the Law, having died to what we were held by, so that we should serve in the newness of spirit and not in the oldness of letter. (Rom. 7:6)

... for the letter kills, but the Spirit gives life. (2 Cor. 3:6)