Saturday, October 19, 2013

Is anyone getting stronger quickly?

Yesterday at Vanderbilt, I read about a lady who had breast cancer. They had a picture of her, so I'm guessing she is about 50. Of course, the picture was of her competing in a bodybuilding competition, after chemo and in remission.

Inspired by her, I came down this morning to the kitchen and realized that I really didn't have enough energy to make coffee. In fact, I couldn't really think straight enough to decide on what to have for breakfast.

"My wife will do all that for me," I thought.

I laid on the couch. I took a few deep breaths, and they made me cough. "Rough morning," I thought.

As I lay there, my son, who is visiting from college for the weekend, runs up the stairs shouting to his sister, "I have so much energy this morning. I just went and did a bunch of pushups just because I have so much energy."


Then he went out to the car with a friend to get a screen protector for his phone. I thought, "I should do something." I forced myself off the couch for a new workout I read about. It's a 3-minute workout. In this case, I chose deep knee bends. I do as many as fast as I can, then pause for 10 seconds, do it again, and try to keep that up for 3 minutes. I've never made it past two.

In this case, it totally energized me. My youngest son saw me gasping for breath, and he asked if I was okay, but all the deep breathing cleared up my lungs.

Usually, when I try exercise to kick the doldrums out, it fails miserably. I just end up in bed, unable to do anything. This morning, though, I'm up and typing this blog now, feeling pretty good.

Of course, my wife has made me coffee by now, along with a bagel with egg and cheese.


So, my question is, if you've survived cancer, how are you doing at recovering energy, and what are you doing for exercise? How is the exercise working for you?

Exercise Story

I was feeling like my stamina was improving. I was walking on the treadmill at the gym and monitoring my heart rate. Over a couple of weeks, I had to go up in speed a little to keep my heart rate above 120. That was exciting.

Inspired, I walked several days in a row, and my body crashed. I slept all day one Friday, and then had little energy all day Saturday. I was on my feet most of that day, so I know it wasn't the result of being lazy and laying around.

So I have now limited myself to 3-4 days per week of walking 2 miles, keeping my heart rate above 120.

So here's the story. Last week, I decided to time myself walking around the block (big block). I started up the street, and I was quickly gasping for breath. By the time I rounded the corner and started down Strawberry Rd, I was wondering if I'd relapsed.

Really. I made myself come to grips with the possibility of relapse and be ready to give thanks to God in all circumstances.

Then I turned onto Dartford, which was downhill, and I realized just how uphill the start of walk must have been. My breath quickly came back, me feet felt lighter than they've ever felt, my heart stopped pounding.

The second lap, I took the uphill much slower. I felt MUCH better.

Earlier this week, walking laps at work, in the rain, I ran a little (very little) just because I felt like it.

Progress is SLOOOOW. But it's progress.

Again, I'd love to hear your plan, your success and lack thereof, and whether you're headed for a bodybuilding contest post-chemo or just struggling along like me.

Thursday, October 3, 2013

The New Normal Is a Lot Like the Old Normal

I was told to be prepared for the new normal. I had a good attitude about it. Leukemia, a slightly off version of Blastic Plasmacytoid Dendritic Cell Neoplasm (see tab above), chemotherapy, radiation, and a bone marrow transplant, and I was still alive. I'm a Jesus-follower. If my life were going to be marked by naps, day-by-day medical treatments, and a much slower pace, then it must be his will. All things work together for good for people like me, says the apostle Paul in Rom. 8:28. Life for me is about pleasing God. I'd like to do that without too much pain, but we all must accept the lot assigned to us unless God has given us the grace to change it.

I'm finding, though, that my new norm is not much different than my old norm except that I have to put on sunblock every day and exercise is nearly as effective.

  • I still am obsessed with work. My work involves not just running my warehouse in Selmer, and being a boss to the best crew of employees in the eastern United States, but also involves writing, which I love. I have so many writing projects that it is impossible I will ever get to them all. Thank God I have such a wonderful family, a lovely and enjoyable wife, and such a cute youngest daughter. (To my other children, you're wonderful, too, but most of you have moved out! Shame on you! Manu, you're not cute, just remarkably creative and becoming more responsible and reliable every day.)
  • I worked in the warehouse packing product a couple weeks ago. I only worked a half day, and I'm sure I was much slower than the younger guys, but it was apparent that I could have worked the whole day at that packing station.
  • I cover my arms, face, scalp, and neck in sunblock every day.
  • On a semi-regular basis I forget my past, stay busy from dawn to dusk or even later, and then, one morning, I can't get up. It used to take at least 24 hours to recover from such an episode, but now I'm usually okay by afternoon if I stay in bed all morning.
  • I have tried a couple times to get up, exercise, and thus overcome a "fatigue day" like that. Exercise is possible, and the ability to fall asleep standing up afterwards is impressive, but results have shown this to be a really bad idea.

The blisters, which I think I mentioned in the last post, went away within a few days of stopping my sunbathing program. I guess I'm going to be out of the sun forever.

My running program has been a disaster. For a while, I would run on the treadmill real slow (about 14 min/mile pace) for at least 4 minutes. I worked that up until I could run about 9 or 10 minutes straight, but it was torture. It was terribly painful, especially in my calves. After my last injury, where my left lower leg knotted up terribly and it took four weeks to get the pain out of my foot, my ability to run had dropped back to 2 or 3 minutes, still painful.

So I dropped that program as unsuccessful. Because we moved to Cordova (suburb of Memphis), we were able to get an inexpensive gym membership. I started to lift weights, and after six weeks I am very, very slightly stronger. That doesn't feel very successful, either.

But here's a program that appears to be working well for me. I was stunned on Sept. 6 that I was able to mostly walk, with a few 30-yard runs thrown in, a 5K in 47:18. That is under 16 minutes per mile. When I ran a mile back in June or July, I was only able to run it in 13:59, even though I ran the whole thing. The mile was really painful. This 5K wasn't really painful at all. It was hard, challenging, and I was sweating and breathing hard, but it was like a difficult workout, somewhat pleasant.

This gym has treadmills that keep track of my heart rate. I started walking at 2.6 mph (slower than 20 min/mile), and after a few minutes my heart rate would be up over 110. I sped up to 3.0 (exactly 20 min/mile), and my heart rate reached 120, which was my goal. Just over two weeks, I have had to speed the treadmill up to 3.4 to get my heart rate over 120. Clear, noticeable progress! There has been very little of that in my exercise programs up to now.

I'm sorry for those of you that have had a rougher route. I hope my story gives hope of things getting better, especially if you're careful about what you eat and stay active. Make friends; be outgoing. The statistics on the health of those with lots of friends and a few close ones versus loners are amazing. One study showed that loners were FOUR TIMES more likely to get a cold when a rhinovirus was dropped in their nose than those with strong social ties.

Why not be outgoing? If you have had a bone marrow transplant, and you can read this, you are a survivor. You have peered at death and walked away, probably not unscathed. You have a story to tell, and you are a conqueror. You have been victorious in battle, just like our soldiers in Iraq and Afghanistan and just like King David and so many other great warriors of the past. Hold your head high, make good use of your second life, and give everyone "what for."

And I'm thrilled for those that have done better. I'm still on daily Tacrolimus and steroids to stave off the rash that covered much of my body for over a year. My lower legs were completely covered in rash that entire time. Tamera is completely off her Tacro, and her last post said she's only been taking it once a week up to when they took her off of it.

Another GREAT story is Lexe Selman, who is PLAYING SOCCER FOR THE UNIVERSITY OF ARIZONA LESS THAN TWO YEARS AFTER BEING DIAGNOSED WITH AML. Come on. How can you beat that? I love her story. You MUST see the video and photos on her June 3, 2012 post. I cannot imagine playing in a soccer game between rounds of chemo, much less doing what she did.

Actually, yes I can. I could not play anything like my former self, much less like a young soccer star, between rounds of chemo, but I did play. Everyone was worried about me, but it was a lot of fun.

I remember a game of softball, after the transplant, when my thighs were skinnier than my knees. I had been walking stairs, so I could jog really slow. I hit the ball, thinking that I would surely remember that I couldn't run, but I didn't remember. My subconscious remembered the old days, commanded my body to take off, and my upper body was several feet down the baseline before my brain realized that I had left my legs behind. Somehow, I managed to turn sideways and roll as I hit the ground rather than faceplant.

I had someone run for me, even from home plate, the next time I came to bat.

Not being very smart, I went out and played soccer with teenagers and young men and women a couple weeks later. Same thing. "I have to beat her to the ball," and my body took off with my legs flailing behind me. I didn't roll, I sprawled. The moment when everyone looks at you and says, "You okay?" is pretty embarrassing.

Anyway, I thought y'all were due a little update. Back to the doctor on Oct. 11, when maybe I can go down on at least the steroids.

Sunday, August 11, 2013

High Speed Catch Up

I have to drive about 80 miles to work in the morning, so this is going to be a quick post. I am WAY overdue.

First, we moved to Cordova, a suburb of Memphis, which is why I'm driving 80 miles to work. I can telecommute 2 or 3 days a week, so that will work out okay, I hope.

I have met more neighbors in this partial week we've been here than I've met in my entire adult life (except at Rose Creek Village, of course). Tonight, I met the parents of an 8-year-old girl named Julia Cobb, who underwent a stem cell transplant (SCT) about 45 days ago. She doesn't have a blood cancer, like most SCT recipients. She has a type of "sarcoma." See Julia's story because I don't really know what that is except a solid tumor that started on her shoulder blade, was treated, relapsed, and then came back in several spots in her body.

I was so excited to meet them, and I really hope we get a chance to be a help to them. The father is a cancer survivor, too. His mother-in-law had exactly the same cancer, an intestinal cancer near as dangerous as pancreatic cancer, which is deadly. They went through treatment at the same hospital at the same time. He made it, and his mother-in-law didn't. Later his mother also died of cancer.

Nonetheless they were jovial. It was such a thrill to meet them, and to find out God put us three doors down from them!

Ok, real rapid update on me.

My treatment for my acute GVH, which worked pretty well, was to sun my lower legs and forearms, two or the worst rash areas, for 5 to 10 minutes per day. I have had almost no rash, rather than usually having rash an all my lower legs, half my thighs, a third of my trunk and on most of both arms.

Nonetheless, on Friday my NP--the wonderful and beautiful nurse Catherine--just about went into shock when I told her what I'd been doing. She hid it well, but she was horrified. She casually got the doctor as normal.

Dr. Savani came in saying, "We understand Dr. Pavao has prescribed a treatment, but we don't know this Dr. Pavao, and we don't think he is approved. So we are going to use the Catherine and Dr. Savani treatment. Haven't we warned you from day one not to be in the sun? Did we forget to tell you over and over to stay out of the sun?"

Seems I do remember that, but ...

He wasn't interested in "but." (I suspect he wanted to say "butthead.")

He explained that the danger is that I would move on to chronic GVH, and specifically a form of GVH rash called "sclerosis," in which my skin would harden like dry leather, restricting movement and being impossible to treat.

His lecture went on for a little while, and I sheepishly agreed to stop Dr. Pavao's treatment.

When we were leaving, my wife said, "It's possible they know some things about GVH and the sunshine that we don't know about."

I howled with laughter. Yeah, okay. I admit that eight years of medical school and years of daily experience with transplant recipients might give them a slightly better idea about sunshine and GVH than I have.

Otherwise, he said my blood counts are normal for a guy taking the medication I'm taking. He said I'm doing "100%"! (That should be pronounced with an Indian accent to get the effect.)

I don't get to drop my Prednisone (steroid) this time because of my sunshine treatment. Bad boy!

He also said, "No one can ever say 100%, but you are very unlikely to relapse."

So, I'm embarrassed but alive and apparently likely to continue to live ... if I stay out of the sun.

Monday, June 10, 2013

Alternative and Natural Medicine Rant

After reading one more attack on the medical system from someone praising a good idea (eating nutritionally) and wishful thinking (that herbs cure cancer), I have to say something.

Admittedly, drug companies are out for profit. Despite this Ida-Rubicin, Vincristin, Cytarabine, Methatextrate, tacrolimus, prednisone, and other drugs saved my life. Zofran, Prilosec, and other medications made the treatment I required bearable. Those all came from pharmaceutical companies.

The reason that corrupt, money-hungry drug manufacturers save lives is because there is a scientific method and there are laws and agencies requiring the medical establishment to make every effort to follow the scientific method. It has its shortcomings, but because hospitals, researchers, and pharmaceutical companies have to report their results publicly, they are scrutinized, and we learn.

The result? A few years ago a guy with BPDCN-like leukemia, like me, was guaranteed dead in two years, probably less, and that only if he went through chemotherapy. Diagnosis to death for aggressive leukemias killed in an average of 6 weeks in the 1960's.

Because of a lot of research, we now know you can save BPDCN patients by giving them a bone marrow transplant. Only five or six years ago, such a transplant killed 30% of the recipients. This year, however, it is down to 5%.

FIVE PERCENT! People ought to be cheering them, not attacking them.

How did they do it? By expensive drugs? Partially. They always had the expensive drugs. They dropped the death rate from 30% to 5% by assigning only a few patients to one nurse practitioner. The NP diligently tracks the patient's health and gives advice, including nutritional, attitude, and lifestyle advice. The NP learns the patients, sees them often, and notices if a problem arises.

So let's compare that to alternative, natural medicine. I hope it's no surprise to you that I researched the dozen or so natural therapies that well-meaning friends recommended to me. What did I find?

Nothing. No records. No people that could be contacted. First names and user names with comments on web site. Absolutely nothing verifiable. I was insulted by one "camp" that promises turned around health in three weeks because I asked them if they had any references to prove their method worked.

Gerson Therapy has recently started releasing their records. Kudos to them. The results are not very impressive, but they do have results. Gerson Therapy, according to the Gerson Therapy web site, doesn't do anything for acute leukemia, so I quite researching them once I found out.

Everyone else? Nice claims. Wishful thinking. No evidence.

I once looked up the claims that a company called Lose Your Back Pain (I think) was making for an enzyme that you could take by mouth. They said it would relax your muscles, relieve pain, and help your back.

I looked up the enzyme on the PubMed database. It was there! Only one study, but the study concluded that the enzyme relieved pain and inflammation as well as ibuprofen.

The problem is, very few alternative medicine claims pan out like that. And when they do, the herbs or enzymes are sold almost as expensively as pharmaceuticals. A small dose of the enzymes costs $60/month.

People make excuses. "No one will study these herbs because they can't make money on them."

That is just not true. The last time I checked there were three ongoing studies on the efficacy of Pomegranate juice for preventing prostate cancer. It's hard to find a natural food claim that hasn't been studied.

I want to make it clear that I agree with the importance of good health. We could greatly reduce cancer, heart disease, diabetes, and many other diseases by eating more healthy and exercising.

However, it is ridiculous to claim that doctors don't know and don't promote healthy eating and exercise.

Miracle health, from drinking Acai juice, doing Pilates, or taking colloidal silver, is a fantasy. Colloidal silver, by the way, can permanently turn your skin gray if you drink too much of it. Oh, yeah, the medical establishment has studied colloidal silver, too.

It makes me angry that people with no evidence to back up their claims, and who have no intention of keeping track of the success of their claims, fire salvos at a medical establishment that has a lot of problems, but which has almost doubled our expected life span over the last century.

Saturday, June 8, 2013

So Much To Talk About!

The last post was named Nothing To Talk About, so I thought I'd name this the opposite as some sort of interesting pun, though now that I think about it, I can't imagine what would be interesting about that.

But it's an appropriate title.

Life's a whirlwind. I'm a writer, and it's not just this blog. I write the content for Christian History for Everyman and Proof of Evolution. I edit and upload the pages for A Brief History of Soccer. Well, I should say that I think about writing the content for Proof of Evolution. I don't have time for it.

I do have two blogs that I do find time for, though, this one and The Rest of the Old, Old Story.

I recently wrote a 40-page booklet called The Apostles' Gospel. I was supposed to do a final edit on it this last week, but I couldn't get to it. I spent all day Thursday in Nashville getting checkups at Vanderbilt, which I wrote about. Friday we were out looking at warehouses all day because our business has outgrown its current building, and we need to move. Between the heat and all the walking—one of those warehouses was like a small town—I was exhausted and had to cancel a teaching I was to do Friday night.

Today I edited an old booklet of mine called How To Make a Church Fail. It purports to be a discovered letter by Satan explaining how he got the church to compromise with the government in the fourth-century Roman empire. Call it an unusual form of historical fiction. I haven't read it myself in three years, and I loved it.

Okay, maybe that's a weird thing to say about my own book.

It'll be out on Kindle in no more than a month, I'm sure. My assistant and daughter-in-law, Dassi, is furiously fast at turning edited copy into a booklet with an incredible book cover. She adapted the terrific painting done for me by Jeremiah Briggs into the best cover I've even seen. Too bad's it on a 20-page booklet. On the other hand, booklets are cheap. The artwork on the cover will be worth more than the purchase price!

I've already started on a book called The New Law. It's only got eight pages so far, but the only review I've gotten was, "I'm so disappointed it ended there."

I have a booklet somewhat done that I found on my hard drive called The Gospel and Grace. I would love to edit that one, too, but I don't know when I'll have time.

In the meantime, I just sent an email today asking for Dassi's help on turning the "Yippee! I Have Leukemia" blog into a book. I've been meaning to do that for a year, but ... yeah, I haven't had time.

Thursday and Friday, the days I went to Vanderbilt and looked at warehouses, I spent free time on the phone trying to work out pre-approval for a loan so we can buy a house in Memphis. Friday afternoon, a customer with an Irish brogue came in and struck up conversation. It was great, but I got a phone call and questions from the warehouse staff during the conversation, and when I was done, I couldn't think straight. I was light-headed, and the world looked extraordinarily yellow.

Sponsored Link

I'm featuring my first book, In the Beginning Was the Logos, on Kindle boards on Monday. It will be at 99 cents for Kindle through all of June, despite the fact that it is over 400 pages of captivating history and years of research. (The most common remark about the book is, "I can't believe you did all this research!" The second most common is, "Wow, this history book was actually interesting.") It will also be featured on and sometime this month.

What I got really excited about, though, was that the manager of the Buffalo Wild Wings in Jackson asked me to come down and do a book signing. That would be fun!

I gave him a signed copy of the book when it came out. I talk to him here and there because we've ordered a massive amount of wings for our warehouse a couple time as a thank you to the workers. If they were closer to our warehouse, we'd do it more often!

Thursday, June 6, 2013

Nothing To Talk About!

I want to tell you about my checkup at Vanderbilt today.

I got some immunizations. I saw the Nurse Practitioner, lovely and charming Cathy, and one of my favorite doctors, Dr. Jagasia.

Yeah, my best checkup report ever. There is really nothing to report! In fact, there was so little to report, I forgot even to check my blood counts, which I usually do on my iPhone before Catherine ever comes in the room. (What do you call a room like that? A seeing room? A patient room?)

But I'm going to chat anyway. Thanks to all those who have said they are interested in my inane ramblings.

Conquering GVH of the Skin

I've been training—doing squats, sprinting, jogging, walking, playing soccer—in vain hopes of legs of steel. Today, I was happy to have legs of pale, human flesh, rather ordinary except for the large amount of varicose veins around my right ankle.

Today was checkup day. Usually Vanderbilt likes to give me two months between appointments, but I had a May appointment due to the large amount of GVH rash I had. For the last week, though, I've had no rash at all.

No rash at all.

My lower legs have been covered with a red, bumpy rash—that doesn't itch or bother me—for as far back as I can remember. At least 8 or 9 months. The rest of my rash comes and goes, but I have always been able to count on my entire lower leg being covered in rash except the upper calf area.

I still can't reveal the new treatment that I added in late April, which produced immediate results. Afterward, circumstances prevented my added treatment for a couple weeks, and the lower leg rash was still pretty bad for my appointment in early May.

Between then and now, though, circumstances have changed, and I have been pretty diligent with my secret treatment. The result has been no rash on my entire body, even though I've only been treating my lower legs.

However, since I don't care to tell my awesome care team at Vanderbilt about this secret treatment—yet—I can't tell you, either. I need more data.

So I go back in two months, August 2, for another checkup. If we have managed to stay GVH-free between now and then, I will reveal my treatment to them and face my just desserts. They're such nice people, I really don't want to kill them with astonishment. Nor do I want them to choke me to death for trying it.

So I have to have a lot of success under my belt.

My New Exercise Goal

I have a new goal. Remember in one of the last posts I told you I ran a whole mile, but it took me 13:56 to run it?

Well, the very next day someone told me that a friend of mine has been out jogging with her two children, and they ran a 14-minute mile with her. I blinked a couple times in silence, and then I asked, "How old is Tanaya?"

Tanaya is my friend's daughter.

She is 4.

The day after that, I saw my friend, her son (Jaden), and Tanaya come running in the gate of our village. My friend was pushing a baby stroller while she ran. Jaden and Tanaya ran casually beside her, clearly not tired. Jaden is 7 or 8 years old.

I tried to decipher the scene in front of me.
Yep, that's her (photo by Ashley Hartle)

People from our village run on that road all the time. If someone is coming in the gate of Rose Creek Village running, then usually they have either run to the end of Lola Whitten (2 miles), or to the end of Rose Creek Road (4.4 miles), or around a loop that we call the King Road loop (6 miles). (Or sometimes back from my warehouse, which is about 15 miles.)

I'm pretty confident that Abby would not have run with three children down Rose Creek Road, so I'm guessing they only ran two miles.

I looked at Tanaya's smooth, casual stride, the turn of her head—both sideways and upward—to impart some bit of adolescent wit to her mother as she hit the end of her 2-mile jog, and I realized that this 4-year-old girl, over which I had a 4-second advantage, had surpassed me; indeed, left me floundering in the over-sized wake of her success.

So today, on the way to the hospital, my wife read a social network post from Tanaya's mom. "The internet results show that Jaden and Tanaya ran 10:57 for that mile!" (paraphrased)

I was depressed. My wife assures me that I can catch her.

I'm thinking, well, by the time Tanaya is 11 or 12, it's going to be hopeless. I'll be 60 or so and slowing down. However, if I can make some real strides (no pun intended) in the next three or four years, a 55-year-old guy ought to have an advantage over a cute, but 4-foot-tall, munchkin.

So that's my new goal. First, catch up to Tanaya's standard right now, which will take at least six months, probably a year. Then apply my extensive knowledge of speed training to this tired, beat-up old body, and I ought to be able to compete if I don't let her get much over 4 feet tall.

I got a nice email from Tanaya's dad, Nathan. He told me his family only ran one mile that day, and he also corrected my spelling of Tanaya. He told me he doesn't know if he'll be able to keep up with Jaden, who has run backward in order to slow down enough to stay with with his little sister.

Another anecdote: Before all this, my wife saw Abby racing up the hill towards here house at full speed. Worried, my wife sent her a text asking if everything was all right. The answer? "Everything's fine. It's just that if I don't work on my speed, Jaden's going to outrun me real soon."

Final Note

Well, that's my fun for the day. I am so excited to go in, see the doctor, and feel like a normal person getting a checkup. I never imagined that could happen this soon!

I'm still on immunosuppressive medications that help make that result true. We are tapering off them very, very slowly. Why?

Cause that's the way we run.

Thursday, May 30, 2013

Life as a Leukemia Surivor

I am a leukemia survivor. People tell me that I am an unusual one.

This post is written specifically because I'm worried that yesterday's was boring, even though I felt like it was essential to write those things for the sake of other survivors who might need to see how others did.

Today's ... well, it won't be.

I was given permission by Vanderbilt Medical Center to move away from the area in early May, 2012; just over a year ago.

Here was the story at that point:
May 1: "When [the EMT] lifted the bandage, there was a small explosion of blood that splattered all over the bed, my shirt, and even on him. The blood then began running off my chest and pooling in the crook of my arm."

The bandage that squirted when peeled.

May 10: We moved back to Selmer from Nashville.

May 30: "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."

This is how I had to dress for softball, too

June 13: I was still losing weight. I was 130 pounds, down from 190 before the transplant, and the chemo lines on my fingernails were growing out:

The scrawny dude
chemo-lines; one grown to the end, the other halfway
Being scrawny gave me some good stretching abilities!

Life as a Workaholic Leukemia Survivor

That sorts of sets the stage for where I was one month after returning to my home in Selmer.

In that condition, I returned to work. I run my own business, so I was able to set my own hours. I had to stay home and rest about one day per week, and hemorrhoids would be an ongoing problem throughout the summer.

So what would you do?

I rented a building in Selmer and tried to start a coffee shop.

Understand the scenario. Our church owns the building in Selmer, and they tried to do a coffee shop in 2011. It was almost successful. I really believed the problem was that we had a terrible sign, and there was no way to really tell what the building was being used for. Also, we had no advertising budget, so there was no advertising, either. Just word of mouth.

So I rented the building and tried to do it right. I advertised in the paper. I put a good sign on the front of the building, and I tried to run it with my daughter and a friend.

Front of the Selmer Buzz

Run it? I was already working, and I was taking naps at work on my office floor to do so. I was trying to catch up from 10 months of being in Nashville away from the office. The worst part was trying to catch up from the four weeks I didn't even eat, much less look at emails and texts.

I don't just have a warehouse business I was running, but I maintain four web sites besides this blog.

Why was I starting a business?

It seemed right. The building was sitting empty, costing my church money. I really thought I could make it work, and I was looking forward to using the building for seminars and other educational events that would benefit the community.

People suggested that maybe I was overdoing it. I acknowledged they might be right, then went on about my business.

The Day

Then came "The day."

I don't remember what day it was. I think it was in August.

We were open in the afternoon, but my daughter was unavailable to work for some reason. I tried to get hold of the friend who was helping me, but I couldn't reach her, either. Finally, I got my secretary from work, and I went down to The Selmer Buzz, as I was calling the new coffee shop.

Our advertising and sign hadn't worked at all. Business was incredibly slow, and we certainly weren't making any money. We did have one very successful seminar on health care reform, but otherwise, pretty dead.

It was not a good day for me. Back then I called those "fatigue days." Usually, I just stayed in bed all day. I'd been told not to fight those days. They always win. Today, however, I couldn't do that. I had to open the coffee shop.

I remember the time frame now. It was late October, early November, 2012. I had jogged for 3 or 4 minutes one day a couple weeks earlier, an extremely long run for me at the time. The next day I had run, then walked, 20 or 30 yards each, for a mile. That was really tiring. The day after that I went on a 4-mile walk with my family at a local park, much of it on hills. I was hobbling by the end, as was my daughter, who had injured her knee.

Exercise is supposed to help prevent blood clots, but I suppose overdoing it can make them happen. I got a blood clot in my calf so bad that I couldn't stand for longer than 5 minutes at a time. The pain in my calf would build and build as I stood, then begin to relieve if I could sit down and get my leg elevated. I brought a wheelchair to the coffee shop so I could get around with my leg up.

In that situation, on a fatigue day, I went to the coffee shop with my secretary from the warehouse so she could help me run it. I showed her how to the run the espresso machines and the "cash register," which was really a program on the Selmer Buzz' iPad.

Then, exhausted, i went to take a nap in the back seat of my car. I covered myself with a sleeping bag, and then realized that my toe hurt too much for me to sleep.

I have always been prone to ingrown toenails, but rarely have they been bad. I had chemo lines on them now, though, and the toenail was brittle. It had broken, and when I looked at my toe, I realized how bad the ingrown toenail was.

I don't remember which of these chemo lines gave me the problem.

Sighing and longing for sleep, I got out my toenail kit, which I carried with me at all times due to my finger and toenails constantly breaking or crumbling. It was agonizing, but I got my toenail as cleaned up as possible, and I got some Neosporin on the bleeding side of the nail.

My toe was throbbing, and it was trembling like a hurt puppy. I figured the pain would wear off pretty quickly, so I laid back under the sleeping bag, leaving my foot bare. I took a deep breath, and ...

Tap, tap, tap.

I looked up at the window where my secretary was tapping. I unlocked the door, and she opened it.

"There are four customers in there, and the espresso machine blew apart. I don't know how to work the other one."

My heart sunk. I was so tired. I couldn't imagine getting up. My toe was throbbing, and my foot was cold.

"I don't know if I can make it," I told her.

She went back in.

I pulled myself up, then I pulled my sock over my still trembling toe. I loosened the laces on my shoe, and I pulled it on my foot. Then I hobbled into the coffee shop through the back door. My calf started to throb as I got inside. My toe was already throbbing.

I smiled and greeted the guests, and I went to our new espresso machine. We weren't using it because my daughter didn't like it. I knew how to use it, but I'd only used it a couple times. Being distracted by pain and trying to take care of the customers, I quickly reached down and pulled the cap I would have pulled on the other machine.

Steam blasted across my hand. The pain was instant.

I jerked my hand back, looked at my secretary, smiled, and said, "Oops."

Amazingly, between me and her, we got the lattes out in a couple minutes. I had been standing the whole time. Pain was shooting through my calf and making its way up into my hamstrings. I looked at my secretary and said, "I'm going to bed now. I hope we have no more customers."

I grabbed a soda can on the way to the car so I'd have something cold to relieve the pain in my burnt hand. I hobbled quickly to the car, needing to get my leg in the air to stop the pain in my calf.

In the car, with the cold soda can pulled under the blanket with me, I uttered one prayer before I went to sleep. It was pitiful. "God, please stop hurting me." That's the last thing I remember.

The next day I closed the coffee shop.

December, 2012

 Obviously, I'd learned my lesson. I needed to rest. I'm a former leukemia patient, but still a recovering one.

The blood clot cleared up and stopped causing me pain in November. So in December I drove with my four youngest children to California for a vacation. My oldest son lives in southern California, in Riverside, and my brother lives in Sacramento, as do some "missionaries" from our church.

My oldest daughter, just turned 17, was diagnosed with the flu right before we left. She threw up regularly throughout the first two days of the trip.

Funny, though, despite my depressed immune system, I didn't get sick. Neither did anyone else in the family.

The weather had been in the 40's and 50's and drizzling for at least 2 or 3 weeks before we left. We were looking forward to the drive across the deserts out west.

When we got to southern California, the weather was in the 40's and 50's and drizzling.

I was cold all the time. I liked nothing better than curling up under blankets with a ski cap on, breathing down into the blankets to keep them warm.

My skin was also incredibly dry. It flaked everywhere. I was constantly having to brush it off my clothes. It was like I had dandruff everywhere, especially my face. To combat it, I applied a strong moisturizing lotion over most of my body twice a day. It was cold to put it on, and the moist layer on my skin just made me colder than I already was. It was also horribly time-consuming, as I also had to apply steroid cream to my skin twice a day.

I froze every time I had to apply the lotion or cream. Then I would be cold afterward, and I was cold all the time anyway. I missed a few applications of the steroid cream because I couldn't bear it, and I returned to Tennessee, driving, with a GVH rash over most of my body.

February, 2013

I tried to rest through January, but at the end of the month my son called from California.

"Hey, mom and dad, I'm getting married."

"That's fantastic, son! When?"

"February 10."

My wife said "Great!"; I said, "Isn't that in 11 days?"

It was. Amazingly, we found one very well-priced flight for February 8. Back out to California we went.

This kind of "rest" turned out to be very effective. I had a big increase in energy about that time. No kidding!

March, 2013

March brought spring break. We planned a vacation with the kids to Gulfport, MS. We would take them to the beach.

Then a friend called. He was coming down from New England. Could we meet him in Virginia Beach, Va on the 15th?

Sure, we'll just drive, uh, 14 hours, then come back, pick up the kids and go to Gulfport a few days later.

The trip to Virginia Beach was spectacular. We stopped along the way to visit another friend we know in Virginia, but we made a wrong turn and ended up on a narrow dirt road, climbing a mountain with a drop on both sides. My wife was driving at the time, and we were both terrified. When we got up the mountain, I got out of the car to ask someone for directions, and I was bitten by a dog.

By the time we got to Virginia Beach we had been on the road closer to 24 hours.

When we left Virginia Beach, we chose a highway through Norfolk. We hit Norfolk at rush hour due to poor planning. But it was not just rush hour. There was also construction on the east and south exits out of the city. Traffic was literally at a standstill. We gave up, parked, and went to a mall. This time it was my wife's turn to sleep in the car. She was too tired to shop or drink coffee.

Once we made it back, much slower than had been planned, we got ready for our vacation to Gulfport.

But wait! A pianist with whom my wife is familiar was coming through our town, and he could do a concert if we could arrange it! The only available day was the Wednesday of the week of spring break.

We made a change of plans. Only two nights down in Gulfport, then race back for the concert, then off to the space museum in Huntsville, Alabama, which is only 3 hours away.

Great plan, except our car broke down in Gulfport. We took it to a mechanic, but he couldn't fix it. It's a Lincoln. It's an older Lincoln that I got for $2250, but it's losing functionality because all the parts I need to repair it cost more than the car is worth. (Okay, that's a slight exaggeration.)

Off to the dealer it went. Off to the dealer in Gulfport, MS, that is, and since the first mechanic had the car for a day, we no longer had time to pick it up. We had to go back to Tennessee for the concert. We rented a car and headed home.

The return of the car at the end of the week, after the space museum in Huntsville, went without incident. The trip was not 3 hours, since we had to drive to Gulfport from Huntsville, a good 6-hour drive, then an 8-hour drive back to Selmer, but our Lincoln was fixed. The dealer had even fixed it inexpensively. Amazing.

April, 2013

April saw us flying out to California again!

There was a Bone Marrow Transplant Information Conference in Costa Mesa. Two days of doctors, seminars, questions and answers with BMT specialists, and meeting fellow blood cancer survivors. I really wanted to go.

Just for fun, we threw in another trip to Sacramento by car. Another 8-hour drive. We rented a tiny car that got 40 miles per gallon, and we gallivanted around California for a week. We even drove the Pacific Coast Highway coming back from Sacramento. We took pictures and exhausted ourselves, then arrived at our hotel the night before the flight at 11:30 pm. Fortunately, we had a non-stop flight that didn't leave until early afternoon.

May, 2013

We flew out of California on April 30. On May 2, two days later, I spent the entire day in Memphis at a writers guild and meeting friends. The next day, we spent the entire day in Nashville for doctors' appointments. That was Friday, and another week was gone without an appearance at my warehouse.

The following week was a blur of catching up.

Did I mention that we are outgrowing our warehouse? So we are not just performing business as usual. I am also going out with my warehouse supervisors to look at larger buildings.

A Typical Day

On a typical day I get up between 6 and 8 a.m. It takes over an hour to get ready for the day. I have several prophylactic treatments I do every morning, including checking my big toenails for fragmentation and cleaning them with alcohol. I have to steroid cream my entire body every morning, too. Sometimes there are other things I have to do, depending on the condition of my stomach. Breakfast is not optional, but mandatory so that I can take my morning meds without throwing up.

Usually the morning is filled with internet stuff—answering emails, writing blogs, marketing online, working on a book—which I often do from home. I leave for work before lunch. Often I have to stop on the way for refills on medication, either from the pharmacy or from the grocery store.

I get to the warehouse between 10 and noon, depending on the errands I needed to run and how long I was writing. If it's before noon, I check my to do list, then check on the people. One of my main jobs there is to make sure it's a positive work environment. I take lunch with the warehouse workers, and if I'm lucky they'll have room for me to play soccer with them the last few minutes of lunch.

After lunch I face the torrent of things that come my way. If there's problems at the warehouse I handle them. Accountants, meetings with supervisors, website and book planning with my daugter-in-law, church meetings, salesmen. There are never enough hours in the day, and it's always a temptation to hang around the office late—a temptation I'm careful to rarely let myself fulfill.

Most of the projects that pile up and demand my time are web site and writing projects. I have four main web sites and two blogs, including this one. Between them they got over 2000 unique visitors per day and over 4000 visits per day in April. Since that's 1.5 million visits in a year, the writing seems worth it. I always wanted to be a writer, but I could hardly imagine well over a half million unique readers of the things I write.

My web sites, by the way, are:

I only write the first and third of those. My daughter and daughter-in-law have written most of the Revolutionary War site, and my daughter-in-law, Esther Pavao, has a booklet called Slavery During the Revolutionary War that is available on Kindle!

My son and some college friends write the pages on the soccer web site. The fullest section of the site is its famous players section.

Friday, May 24, 2013

17 Months after Bone Marrow Transplant, GVH, and Recovery

It seemed like a good idea to give an update on recovery.

I am almost back to full strength. I work out most days trying to achieve that. I still can't do a pullup, but I can do 20 decent pushups, and 13 or 14 excellent ones. I can press 65 pounds overheard 10 times. I used to be able to do 75 pounds for 15 reps. I was pretty average strength before leukemia. I was hoping maybe the baby's blood system I received might make me suddenly prone to great strength, but it doesn't look like it. It's taken over a year to get to doing 20 pushups!

Of course, last May I could barely hold myself in a pushup position, so I guess that's not terrible.

I ran a mile straight without stopping last week. That was a great achievement for me, a real "mile"-stone, my wife called it. (Funny girl.)

It took 13:56, which is really slow. On a treadmill, it would have been a 4.3 speed on a treadmill. A real fast walker could have kept up with me. Still, it was hard, very hard.

But I did it.

So I waited a couple days to give myself a rest from my "marathon," and then I tried one time around our warehouse at work, which is about 1/5 of a mile (not a standard distance at all). I was just hoping to get around the warehouse in 2:15, but I just took off at what seemed a pretty fast running speed and hoped for the best.

Halfway around the building, which took about 45 seconds, I still felt great. I couldn't believe it! 3/4 of the way around the building, it was a huge chore to keep running, and my pace slowed terribly. I'm sure I looked like I only had partial control of my body. So I slowed to my mile jogging pace I'd used a couple days before and sort of shuffled to the end.

One minute and forty-eight seconds!!! Whoo hoo!

That's 9:00/mile. In fact, since it's really a bit more than 1/5 of a mile, it's less than a 9:00 pace. That's a decent jogging pace, not a run, for a 51-year-old that's in shape. Six years ago, I could run 8 miles at that pace. Today, I can only do 1/40th of that distance, but I was THRILLED.

GVH & Medication

GVH is Graft-vs-Host disease. I should have a tab at the top of the page with the others for what that is instead of defining it over and over again. If you're still reading this, you probably already know what it is. If not, stay tuned, and within the next week, I'll do a GVH page for this blog.

I've had an ongoing skin rash that has varied in strength. My doctors, and the doctors at the Bone Marrow Transplant Information Conference that I went to in Costa Mesa, CA in April, told me that my rash is acute GVH of the skin. It used to be that if you had a skin rash due to GVH more than 100 days after transplant, they called it "chronic." Before 100 days, it's called acute, and it's considered more dangerous, but less likely to be continue. Chronic is less aggressive, but it's more likely to linger.

Mine, however, is still acute, a year and a half after transplant.

I have no idea whether that matters much.

I do know that either way, the doctors play with an immune suppressor like Tacrolimus and a steroid, like Prednisone, that works differently than the Tacro, but also suppresses the immune system. My rash had gotten bad enough that in April, they had doubled my Tacrolimus dose and increased my Prednisone to 30 mg, even though they thought the 20 mg I was taken were not good for me.

We also use a steroid cream called Triamcilone 2-3 times per day over my whole body. We started that regimen early in April, and it took the whole month to get the rash under control. Usually, when they try increasing my steroids, we can get everything cleared up except my forearms and lower legs, and my lower legs are much worse than my forearms. In late April, I added another treatment, which I am not ready to reveal yet, and my lower legs cleared up as well. We were thrilled!

So this month, on May 3, they dropped my Tacro back to 1 mg and had me drop to 25 mg of Prednisone. I was very diligent with the Triamcilone cream, and after a week. I was still clear. A week ago, they had me drop to 20mg of Prednisone, and the rash came back lightly on my lower legs. We were still thrilled it wasn't progressing, and in the last couple days, it cleared up again!

I am, however, facing some gut issues the last couple days, with a lot of bowel movements, though no diarrhea. Today, my stomach added a lot of burping that doesn't smell very good. In fact, I was driving my kids to town this evening, and when I burped, we had to roll down the windows to blow the smell out.

That could be GVH, too. I wrote to Vanderbilt using "My Health at Vanderbilt" online, which puts my emails right into my medical record, but they won't look at that until Monday. If it becomes an emergency, I have to call to get them on weekends.

GVH of the Eyes

I didn't get any GVH of the eyes until November or December (10 months out from transplant). It was pretty bad for a while, but it seems to have mostly subsided. I wrote a blog telling about pressing on the inner corner of my eye to relieve the GVH attacks. It's still working, and basically I hardly ever have one now. I can drive without sunglasses, read, watch a movie, and type on the computer without problems. I'm still pretty sensitive to wind or a fan blowing, and I had one GVH attack initiated instantaneously by a sudden bright light a couple days ago. Pressing the corner of my eye got it under control, though.

The Future

During the treatment for leukemia, things were pretty difficult most of the time, so it was all pretty interesting in and of itself. It was easy to find things to make jokes about, so it was easy to keep the blog an enjoyable read. This post was a bit more difficult. I wrote this for the sake of others going through the same thing I am so they can compare progress and maybe be encouraged that things that seem to go on and on can actually come to an end. I know I was wondering about the rash on my lower legs.

Maybe in a future post I can tell you the kind of days I have, being a workaholic, swamped father, husband, and Chrisitan teacher, while trying at the same time to be a peaceful, praying man who lives by the Spirit of God. There's still plenty of humor in that pursuit!

Maybe even some encouragement.

Wednesday, May 8, 2013

Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Study

I learned from an email that Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) is also called Plasmacytoid Dendritic Cell Leukemia (PDCL). It's been called a lot of things in the past, including Blastic Natural Killer Cell Lymphoma, which is a pretty cool name for a very "uncool" disease.

Anyway, I wanted to summarize a study published about 6 months ago, on November 30, 2012. It was published online at that time, then published in Blood Journal on Jan. 8, 2013. You can read the whole study on that link.

Thank you to Michael Oldtree for posting the link on for other BPDCN patients.

Basically, Damien Roos-Weil et al analyzed 34 BPDCN patients who had received stem cell/bone marrow transplants from a sibling or unrelated donor.

The blood cells. The cell that stopped maturing, then multiplied uncontrollably, determines the type of leukemia. Notice the difference between Myeloid and Lymphoid cells, which makes the difference between Myeloid and Lymphoid Leukemias. The Plasmacytoid Dendritic Cell is a myeloid cell, which may be why BPDCN is treated like AML.

Here's the results, short and simple:

  1. This was an analysis of treatment results, not a study where the researchers treated the patients themselves.
  2. Ages were between 10 and 70 years old.
  3. They separated the patients into two groups, those under 42 and those over 42.
  4. There was no significant difference in survival rates between the older and younger group.
  5. The sample size was only 34 people. The disease is quite rare, and there have only been about 200 cases ever.
  6. The disease-free survival rate at 28 months was 50% for those that received a full-strength preparatory regimen.*
  7. All of those who received a reduced intensity preparatory regimen died of complications or relapse.*

*A full-strength preparatory regimen, by the study standards, was at least 8 Gy of radiation and at least 10 mg/kg of bisulfan or 150 mg/m2 of melphalan. Anyone who gets a bone marrow/stem cell transplant is told whether they are receiving full-strength (myeloablative) or reduced intensity (non-myeloablative) conditioning.

Discussion of Results

The encouraging thing in this study is that BPDCN, that used to be known as having a 0% survival rate may possible have a 50% survival rate, if the patient is healthy enough to withstand a myeloablative marrow transplant.

The discouraging thing is reading that none of the patients they looked at who received reduced-intensity conditioning survived. They all died of relapse or complications. The sample-size for the reduced-intensity patients was very small (10, I think).

The study calls for more research on the ability of the new immune system (a new immune system is one product of a marrow transplant) to destroy any leftover leukemia and prevent relapse. This is called Graft-vs.-Leukemia, and they would study this by examining relapse rates for patients who received non-myeloablative conditioning. They would also study the relapse rates for all transplant recipients based on how much Graft-vs.-Host they experienced.

Graft-vs.-Host means that the new immune system is attacking the patient's body, which happens pretty often because the immune system and the patient's body have different DNA. (Yeah, the DNA of my blood is different than the DNA of my skin.) GVH is a bad thing in one sense, but it's also a good thing in most types of leukemia. An immune system that is aggressive like that is more likely to find and destroy any leftover leukemia cells that managed to survive the chemo and (sometimes) radiation used to prepare the patient for transplant. Thus, the relapse rate among leukemia patients in general is lower for patients that experience a small amount of GVH. A large amount of GVH is life-threatening, and dying is no good way to prevent relapse!

This study is saying, however, that they don't have evidence that Graft-vs.-Leukemia is effective in BPDCN patients, though they don't have a big enough sample size to confirm ineffectiveness. And that is a question we really need to answer! There is no sense putting patients through non-myeloablative transplants if they are not going to be effective. Of course, how are we going to find out if we don't try. Usually, non-myeloablative transplants are only used on older or weaker patients who might be killed by full-intensity regimens.

One final note: I'm not actually a BPDCN patient. I was diagnosed with BPDCN by a lab in California. The lab at Vanderbilt Cancer Center, however, was not willing to confirm the diagnosis. They could not come up with an alternative, either. They ended up calling my leukemia "undifferentiated," which means, in my case, they really didn't know what it was. They treated it like they would BPDCN, which means that I got a chemotherapy designed for Acute Myeloid Leukemia (AML) and a fully myeloablative marrow transplant was required as soon as I got into remission. Waiting any longer than 6 to 9 months would have just about guaranteed a drug-resistant relapse that would prove fatal. (Due to complications, we had to wait 6 months, and everyone was in a hurry at that point.)

Monday, May 6, 2013

News on Progress with T-Cells Against Leukemia/Multiple Myeloma

The article is here:

Souped-Up Immune Cells Force Leukemia into Remission

Note: There is a YouTube video explaining the same story linked in Todd's comment below.

Scientists are working miracles with T-cells, and some of it is thanks to the HIV virus. AIDS, as you know, is an immune deficiency. It is caused by a virus that attacks T-cells, a major part of our immune system.

Scientists have captured the HIV virus, and they have made a slave of it. Viruses are how scientists got DNA into cells. We can't really put genes into DNA on our own, but putting genes in DNA is how viruses work. So scientists have disabled the HIV virus so it is not dangerous, but it can still weasel its way into T-cells. Viruses are almost nothing but snippets of DNA (it's questioned whether they qualify as "life"), and scientists add some DNA to the virus, then let the virus carry it into the cell.

If you want to fully understand the illustration below, you can read the following incomprehensible paragraphs. I thought, though, that we all might be able to understand the illustration a little just from the title of the extract.
"Schematic Representation of the Key Structural Features of SIV and HIV-1 Entry into T Cells"
(A) Different stages of viral entry from budding, to maturation, to entry claw formation. For the SIV strain used here, viruses that are docked to the cell via an entry claw show very few, if any, viral spikes on their surface, whereas non-contacting viruses typically display between 60 and 100 spikes on their surface. The entry claw is composed of between five to seven anchors spanning the region between the virus and the cell, each ∼100 Å long, and spaced laterally by ∼150 Å.
(B and C) Two alternative models for viral entry. In the global fusion model (B), the formation of the entry claw is followed by progressive fusion of the viral membrane across its width, leading to merger of the contents of the viral membrane with the cellular membrane. In the local fusion model (C), the formation of the entry claw is followed by the creation of a local pore centered at one of the rods, leading to delivery of the viral core into the cell."
HIV entry into T cell schematic
By Rachid Sougrat, Alberto Bartesaghi, Jeffrey D. Lifson, Adam E. Bennett, Julian W. Bess, Daniel J. Zabransky, Sriram Subramaniam [CC-BY-2.5 (], via Wikimedia Commons

As far as what I've read, scientists have been able to do two things with the HIV virus. In patients with Chronic Lymphoid Leukemia that would not respond to any conventional treatment, they engineered the patients T-cells to kill B-cells, which are another immune system cell. In these CLL patients, though, the B-cells are the ones that became cancerous, so when the T-cells killed the B-cells, they also cured the cancer.

The side effect is pretty major. Those patients will never have B-cells again, and they require immunoglobin injections to help boost their immune system. Nonetheless, their immune systems will be weak forever.

In the article above, the patients were Multiple Myeloma patients (related to leukemia because it is a blood cancer, but it is not leukemia despite the incorrect title of the article), and scientists engineered the T-cells to target the specific cancer cell causing the MM. They had some success putting the patients in remission, but since standard therapy was also being used, the power of the T-cell therapy is still unknown.

As an aside, Christian singer Carman Licciardello, who just goes by Carman on his albums, was recently diagnosed with Multiple Myeloma. They told him his MM is incurable and that he'll die in 3 to 4 years. The article above applies directly to him.

Thursday, May 2, 2013

GVH of the Eyes

I'm just sharing a very odd—in my opinion—remedy for GVH of the eyes.

*GVH is Graft-versus-Host disease, which happens to bone marrow transplant recipients. It is explained at end of this post.

My ophthalmologist gave me a steroid drop to use on my eyes when I get a GVH attack, but the steroid drop is not the remedy. Instead, the instructions for applying the steroid drop are the remedy. Those instructions work even when I don't put the steroid drop in.

The instructions tell me to pull down my lower eyelid, put a drop in the pouch that forms, then close my eyes and put pressure in the inner corner of the eyes for about two minutes.

One day, I was getting out of the car at a gas station, and a gust of air blew across my eyes and instantly my immune system went on the attack. When that happens, the pain is too bad for me to open my eyes, which means driving away from the gas station would have been impossible and pumping gas would have been extremely difficult. Since it can take from 15 minutes to 2 hours for a GVH attack to subside, this was a problem.

I sat back down on the front seat with the front door open, and I put my fingers on the inner corners of my eyes. The pressure was pretty uncomfortable, and I couldn't keep my fingers in one spot because my eyes were already soaking wet from tears. I had a couple napkins in the glove compartment, so I grabbed one, and I used it to apply the pressure.

From the moment I started pushing on the inner corners of my eyes, I could feel the relief start. I think I ended up pressing on my eyes like that for 2 or 3 minutes, and the GVH attack was over.

My eyes were still sensitive, so I slapped on some wraparound sunglasses before I pumped the gas. After I was done, I used the napkin to apply pressure again, and it helped relieve the sensitivity a bit.

I have tried this method numerous times since, and it has been at least moderately effective every time, often completely effective. I have begun applying pressure to the inner corners of my eye for a minute or so a couple times a day, just for prophylactic (preventive) purposes.

Some Explanation of the difficulty of relieving GVH

GVH, or Graft-vs-Host, is an attack from the immune system when your immune system has been replaced with the rest of your blood as a result of a bone marrow transplant. Bone marrow transplants are generally done only on Leukemia, Lymphoma, and Multiple Myeloma patients—in other words, people with blood cancers.

A GVH attack on the eyes is not like having something in your eye. If you get a speck in your eye, once you remove it, the pain subsides immediately. GVH means your immune system is attacking the eye. It is not enough to remove whatever irritated your eyes and spurred the immune system attack. The pain will not go away until you get the immune system to stop attacking. Getting rid of the irritation helps make that happen, but, at least for me, it's hard to say how long it will take for the immune system to back off. Like I said, it can take up to two hours.

During those two hours, the pain is not too bad if I keep my eyes closed. The tears keep running, but otherwise it's pretty bearable. If I open my eyes, however, the pain rapidly increases so that I can't keep them open for longer than 3 or 4 seconds.

Before I found this remedy, I would usually just go take a nap if the attack doesn't stop in ten minutes.

A Possible Explanation for Why This Remedy Works

I just went to a Bone Marrow Transplant Information Conference in Costa Mesa, CA a couple weeks ago. I asked why pressing on the inside corner of the eyes might help shut down a GVH attack, and the ophthalmologists doing the GVH of the Eyes seminar didn't have an answer. They told me that I was surely blocking the canals that drain the tears to the back of the nose, but that really didn't explain the effectiveness I was experiencing.

One doctor suggested I find out what magic was in my index fingers and market it.

That's funny, but the fact is, it works for me. (If you suffer from GVH of the eyes, please try this and tell me if it works for you.)

Earlier in the presentation, however, the doctors had answered a question that might explain my remedy better than just blocking the tear drain canal.

Apparently, we need not only the tears our eyes produce, but also need an oil coating produced by glands in our eyelids. One man there had been told by his doctor to close his eyes and press on his eyelids to express the oil from those glands. The doctor explained that GVH can beat up on those oil glands enough that they are not as soft as they should be, and the oil can't get out of them.

The doctor at the conference confirmed this is a good idea, and he said that a warm compress can do the same thing by thinning the oil and relaxing the glands.

So I wondered if maybe I'm not just blocking the canal that drains the tears in my eyes, but that I'm also expressing oil onto the eyes when I press like that. Maybe my GVH problem is not just dry eyes from lack of tears, though I do produce only 30% (left eye) to 50% (right eye) of the tears I'm supposed to produce. Maybe, however, with more oil, which helps the tears coat the eye, my cornea is being taken care of well enough.

Loose Thoughts on the Issue

First, the whole topic seem paradoxical. Lack of tear production is both a symptom of GVH and a cause of those painful GVH attacks. Yet, when I have an eye attack, as I call them, my eyes produce tears profusely, like a teenage girl at a chick flick. (Okay, or like me at a love story, or any heart-warming story for that matter.)

Anyway, where are all those tears coming from is the problem is tear production?

Second, we have two ducts to drain our tears. One is in the lower eyelid, near the corner of the eye, but not at it. I can see exactly where mine are because my ophthalmologist put tiny plugs (latex?) in the duct in the lower eyelid. This was to give me a bigger "tear lake" since mine, as I mentioned, were only 30% and 50% of full.

Third, I corresponded on Facebook with a person that produces no tears at all as a result of GVH. I have to suspect my method wouldn't work for her. She did find a great line of sunglasses called 7 Eyes Air Dams, though, that has an inconspicuous rubber ring around the lens on the inside of the glasses that butt up against your face, around your eye, to prevent wind and dust from getting in. I was very interested in those. My only complaint is that there are so many choices, I was really thrown.

I have finally decided to get prescription Air Dams, but I have to go get a prescription locally first.

They're available at I'd give you a link, but I can't get to load right now even though everything else I'm trying is working fine. Is it possible for to be down?

Have a great day!

Wednesday, April 10, 2013

15 Months in a Week

I mentioned the bruising on my arm a couple posts ago, and I even added pictures.

I was a little worried about a blood clot, but I saw my local doctor today, and he's convinced I either partially ruptured or partially tore the medial tendon on my bicep. I'm sure he thinks that caused the bruising because over the last three weeks, the bruises have moved down around my elbow.

I'm pretty sure I realize now what happened. I was worried that I might have a blood clot because the bruised area really didn't hurt until a week after I played soccer and got the gigantic bruise. Also, the pain was getting worse, not better.

Once the doctor told me there's damage to one of the biceps tendons, I knew exactly what happened.

The bruise came from crashing into someone playing goalie. There was a little soreness just under my shoulder on the outside of my arm, and the bruising clearly came from there.

Since my arm wasn't hurting, I continued exercising, and of late exercising has included trying to get back to being able to do one pullup. Each day I was getting to where I could get an inch higher, but I was really going at it, holding myself up as long as I could and really straining. I'm absolutely certain this is what caused the tendon problems.

Even more so, a friend reminded me tonight that there are medications that damage tendons. That includes the antibiotic that I've been taking ever since my first chemotherapy over a year and a half ago.

I can strengthen the tendon by exercising, but I have to go easier on it.

Actually, right now I have to go completely easier on it. Since I was worried the pain near my elbow was from a blood clot, I've been keeping all the muscles around there moving. Exercise is good for a blood clot. It is not, however, good for a damaged tendon, and that is why the pain's been getting worse. Fortunately, there's been too much pain the last week or so to try pullups, so I haven't done any "heavy" lifting on that bicep.

Now I know I have to rest it, ice it, give it Glucosamine and Gelatin and light massage. I need to treat it like an injury.

I only didn't figure it out because I never thought of their being two problems, bruising from soccer and tendon strain from extreme exertion trying to do a real pullup.

I have a history of going overboard and injuring myself--mildly--when I exercise. In this case, however, the doctors aren't encouraging me to do less, they're encouraging me to do more.

I have a plan, though, and it's working. Today I ran & walked 5 laps around our warehouse, just over a mile, in 12:25, a personal PL (Post-Leukemia) best by over a minute. My previous best PL time was 13:34, and that was for exactly a mile. Five laps around the warehouse may be 1.1 miles.

Each morning I get up and run on the treadmill at least four minutes. Usually it's just over 5 now that I've been doing this almost two weeks. Four minutes is pretty easy now, and I get only mild strain in my calves. Five minutes has me breathing pretty hard, and my calves get pretty uncomfortable, but it's significantly easier than two weeks ago.

I have a mile-long run in my sights for two weeks from now. We'll see how that goes. I hope to be up to 6 or 7 minutes on the treadmill every day by then. A mile will take me something like the 12:25 I ran and walked today, but it's easier to run outside than on the treadmill by quite a bit, at least for me. I've already done 7:30 of straight running outside, and that was at least a week ago.

I'm kind of excited about becoming a runner again, and I'm trying not to push the progress so much that I injure myself. I've already done that with my bicep, which means I'm limited on the upper body exercises until it heals. At 51, muscles don't heal real fast, so I've probably cost myself at least 4-6 weeks. That's pretty annoying, though I can still do situps and lower back exercises. I can even do pushups if I don't do too many.

Otherwise, life is seeming pretty normal again. I have to watch my toes really carefully to prevent outbreaks of ingrown toenail, and I still have the medications to take and the steroid cream to put on every day.

Oh, and ...


I still have limited hair! As long as my hair is short enough that it can't be moved around, I'm okay. However, as soon as I let it grow much past a quarter-inch, then a hat moves the hair some, and it can leave me looking like I have mange. I just don't have that much hair.

What's funny about that is that I'm pretty sure the problem is that my gray hairs have not come back. It's not that they've gone back to being black, but they just haven't grow back. With only my dark hair on my head, my hair is pretty thin. Like I said, it doesn't look too bad when it's less than a quarter inch short, but seeing my scalp when it's longer makes me look sick (literally sick).

My white hair fell out 2 or 3 days before my black hair when I lost it, too. When it happened, the nurse told me she'd never heard of that happening to anyone else.

Now it's coming in last, too. I have my white beard hairs, though I don't think I have all of them. They are mostly on the side (and shaved off because there's so few of them), and my goatee is definitely not as gray as I remember it.

To give you possibly too much information, but it will be interesting for those who have gone or will go through chemo, I've grown and lost my underarm hair twice since I left the hospital after transplant. Mostly, I don't have any underarm hair now, even though I have most of the rest of my body hair back. I have a lot less hair on my legs, and I don't have any gray hairs on my torso. I used to have quite a bit of grey, at least on my chest.

Like I said, that's more than most of you want to know. I'm just kind of hoping to spare the next person the fear that they're relapsing if they lose hair they've already grown once. Happened to me, and I have no indications of relapse.

Tuesday, April 9, 2013

Math Prodigies & Autistic Savants

On our vacation a couple weeks ago, I was terribly proud of myself. My daughter gave me a math problem to do in my head. She started with a 9-digit number times a 9-digit number, which caused me to howl with laughter. "I can't remember the numbers," I told her, "much less multiply them. Give me something reasonable."

She ended up giving me a 4-digit number times a 2-digit number, it may have been 5974 x 37. Due to the fact that 5974 is so closes to 6,000, I was able to do it easily. I just did 6x37, added three 0's to the end, then subtracted 37X26, which was a math problem I could do.

It was the first time I'd ever done a 4-digit times a 2-digit number in my head, and at age 51, I'm way out of practice. I was excited, and admittedly a bit proud.

Today, however, I'm finishing The Spark, which you absolutely must read. I'm having trouble finishing these last 20 pages because I keep writing about it.

It's about this autistic kid who was delivered from his autism by some brilliantly creative thinking by his mother. By "brilliantly creative," I mean her methods should have been obvious to everyone, but no one else thought of it. ("No one else thought of it" is an exaggeration, but since her central idea runs contrary to "mainline" therapy for autistic kids, I felt free to say that.)

Her child did not so much come out of autism as he was allowed to benefit from it. At one point, Kristin Barnett, the mother, says, "Trying to cure autism is like trying to cure science or art."

This video is about savant Stephen Wiltshire. Jacob Barnett can't draw like Stephen, but he can memorize cities like Stephen can.

I'm toward the end of the book—only 10 pages from the end—so now I'm getting to read the superstar stories and not just the "oh, wow, how are we ever going to get through this" stories. Let me try to quote you this one.

To set the story in place, Jake (Jacob Barnett, the autistic son), has a summer job researching theories relating to light and fiber-optics. His mom is wondering why he has so much free time, and Jake, who may be the smartest person in history, explains that he's been getting the problems he's been assigned solved on the drive home from the university.

This week, he said, would be the exception. He didn't think he'd be able to solve the latest problem he'd been given in time for his meeting on Tuesday.

   I launched into a stern lecture about the importance of a strong work ethic. "You have a job now, Jake. You're being paid, and people are counting on you to do whatever is asked of you. These problems are not optional. ... "

   "I'm not sure I can," he said. ... "In that case, you give your best effort," I told him. "... And remember, there's no shame in asking for help."

A couple hours after that, Jake was leaving the house with his brother. His mom checked on him, and he assured her that he thought he had something he could use. Mom was happy, proud that her son had done the work required of him.

When he went back to research on Tuesday, he called, very excited.

"I did it, Mom. I did it!"

   "Slow down, honey. What did you do?"

   "I solved it! I solved the problem!"

   "That's great! I'm so glad you stuck with it."

   "No, Mom, you don't understand. It was an open problem, a problem in math nobody has been able to solve. And I solved it!"

   I had misunderstood. This hadn't been any ordinary homework assignment, but the kind of problem that career mathematicians take months, years, even decades to unravel. Yet in two hours, between working on his jump shot and playing on the Xbox, Jake had solved it.

I know this story makes it sound like mom's bragging, but there is nothing boastful about this book.

Sponsored Link

The other story I wanted to tell you from the book is when his story finally hit the mainstream media and people began hearing about this amazing kid. A researcher on child prodigies asked if she could run tests on him, and because this researcher seemed to care for Jake and be very "human," Jake's parents allowed it.

In the midst of the test, she read him off 60 random animals. He recited them back in order. She then assigned random colors to each of the animals. He recited the animals back, with their colors, in order again. At that point, she moved on to other questions, then a few minutes later asked him about the animals and colors again. Once again, he recited them back, in order.

The researcher told Ms. Barnett, "No one has ever done that before. Never" (Paraphrase).

Ah, well, I'm still pretty proud of that multiplication problem I did for my daughter. I want to go practice multiplying again, because I saw a guy doing math tricks on a Youtube video, and I figured out there's a secret to multiplying two 5-digit numbers that should put that within my reach, too. I'd have to practice, though.

Anyway, the book is a lot better than I'm describing. I cried through large portions of it, and I think her central theme for teaching not just her own autistic child, but several others as well, is brilliant and obviously, incontrovertibly true.

Who will benefit from this book? You get to ride the incredibly roller coaster of this family's life. I had to take a walk when I read this completely overloaded mom suffered a stroke at age 30, caused by lupus, an incurable auto-immune disease. I couldn't keep reading. But the highs in this book are so high and so amazing that I had to keep a tissue box with me when reading it.

But both you and everyone you know will benefit from reading this book because you will get a new insight into human nature. Probably it won't be a completely new insight, but after you get done listening to Kristin Barnett, you are going to see places to apply that insight everywhere you go.

Now I have to go back to learning how to be a savant. I think it's just a matter of learning how to use different parts of your brain to do things a new way. I just have to find out if it's possible for me to make those kinds of adjustments in my brain. I'm hoping that being pretty weird already will give me a jump start.

Tuesday, April 2, 2013

15 Months Post-Transplant: A Review

Results really vary among those who have had a bone marrow transplant. In fact, not all of us survive. Some of us worry constantly about relapse, some (like me) never give it a thought, even though none of us can rule it out. In fact, the 2400 rads of radiation I got in my brain and body means that I have a high risk of new cancers beyond relapse.

I can't see the good in worrying about that, and for some reason (I chalk it up to God's grace) I seem to be able to "fret not," that's what I do: fret not.

Health and Exercise

I've taken a new tack on getting my stamina back. I was doing two-mile sessions, running some, but mostly walking. Progress has been slow, and that's probably because the exercise sessions took at least 35 minutes, often close to an hour if I include some warming up before and stretching afterward. As a result, I didn't do those sessions on a lot of days and just limited myself to calisthenics, 5-minute or 10-minute sessions several times a day.

So now I'm running every day, about as far as I can run without stopping, which is a little over 5 minutes outside and right at 4 minutes on the treadmill inside.

I still try to fit in the walks and calisthenic sessions (push-ups, sit-ups, and a bunch of exercises I made up), but I am also sure to get in exercise that gets me toward my goal of being able to return to jogging as a main exercise. It's the one exercise that I know from experience that I will stick to on an almost daily basis for years.

I've just been doing this for a week, and I upped the treadmill time to 4:15 (not much of an improvement, huh?). I'll let you know how progress goes.

I'm a little frustrated with the pushups. I do pushups almost every day, and sometimes I do sets. Other times, I do pushups 2 or 3 times in a day. I've been stuck at 12-14 pushups for about 3 months. Admittedly in December, I could only do 10 pushups, then 12 in January, and now I think I could do 14 and maybe 15 at any time. Hang on ...

Just 14.

Still, 10 pushups to 14 pushups in 3 months, taking into account the work I've put in, is almost depressing.

On the other hand, I would say that I have almost returned to my slow, overweight level of soccer skill that I had at 49. I don't have the endurance I did, but I'm almost back to that pitiful speed I had BL (Before Leukemia).

My plan is to work on sprints once I can run 2 miles straight and get faster than I was BL.

Ok, speaking of soccer. Want to see a couple cool photos?

I found out that if you're taking Coumadin, you might want to be careful about how aggressively you go after loose balls when you're playing goalie. Diving for loose balls around the goal is important, as is rushing the oncoming striker in a 1 on 1 situation, but when your blood is thin it can leave marks on your body that really worry your friends and family.

The picture on the left and below was at the peak of bruising. The picture on the right and above is today. I had to take today's picture myself, so it's not very good.

Okay, here's another couple pictures, taken at the Huntsville Space Museum:

I had to let you see this old guy climbing with all the kids at the space museum. My hands still have a lot of strength to regain, so I didn't dare try this, but some white-haired, 60-year-old guy tried it and did better than most of the kids.

I told him I was impressed later, and he said he was pretty sure he was going to regret it the next day. I was impressed anyway.

Revisiting My New Life's Resolution

I didn't make an actual New Year's resolution, but I did make a New Life Resolution when I got out of the hospital after the transplant last year. I was not going to live life by the urgent anymore. I was just going to make the best use of my time, worry less, trust God completely, sleep more, and emphasize people, not tasks.

I failed.

I've been crazy busy, taking on more responsibility than I should have, and living my old way. I get a lot done, some of it important, but in the end the urgent and important end up in the way of God's best for my life ... That means it ends up in the way of God's will for my life, and I end up living in rebellion to God while doing what is good, important, and necessary.

The good can be, and often is, the enemy of the best.

Recommitment time. I'll let you know how I do.

Second New Life Resolution

My other New Life Resolution was to quit being such a perfectionist. There's tons of stuff I've written that is sitting on my hard drive because it's not up to my standards. You would not believe how much. I've been writing almost every day for at least two decades, probably closer to three.

I'm not going back to edit this blog. I wanted to say all this, so I said it. Feedback welcome from you. Feedback from me, however, has proven too critical and has been counter-productive. I'm firing the critic part of me, and I'm keeping on only the writer and editor part. (The editor is critical, too, but he finishes his job eventually.)