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.

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.

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.

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 Bookbub.com and BookGorilla.com 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!

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.