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.


  1. I'm encouraged to see shadows of my 'new normal' in your comments above. For this cyclist, seeing my legs balloon into elephantine proportions and now chicken-like stalks, I'm aghast as I trudge up the hotel stairs each day, yet I'm getting stronger. What a slow go of things though! The sunscreen thing will be a habit I'll have to pound into my head. With all the rain here in Seattle, not much incentive (yet!). Lots of baby steps to go...lots of lovely drugs yet to assimilate and lots of adjustments to the 'old normal'.
    One day at a time!

  2. Yeah, it won't happen next week, that's for sure! I'm hoping, though, that since you were in better shape than me at the outset that you'll recover faster than me after. I couldn't start getting my legs recuperated until probably April, three months after transplant. Be patient. When you hit a year, you'll think, "Really, a whole year has gone by?" Don't be discouraged by setbacks along the way. I had them as often as I didn't have them, but at 20 months, I'm really happy with where I am.

  3. Hello Todd and Paul,
    I was recently diagnosed BPDCN, and am thankfully in remission after 3 rounds of chemo...I have a donor match for my transplant. So, I will be heading into the transplant phase of it all! Your blogs have inspired me, especially knowing that there are few patients diagnosed with this. My entire family has read your blogs and have tremendous hope for my outcome. I am a relatively young woman: 31 years old in Atlanta, GA.

    1. Hi Ray Ali. Do you have a scheduled date for the transplant? If there is anything I can do for you or quetions I can answer for you, please let me know! I am not far from Atlanta, and another new friend is going through chemo in Lexington with the help of my chemo doctor (Dr. Greer) from Nashville.