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?


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, 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.