Thursday, January 24, 2013

From Assault to The Salt

I hope, anyway.

Today, the saga from way back in August ended. McNairy County's Circuit Court dropped all charges against me for assault, and sent me home. My lawyer tells me once the paperwork is filed and in the computer, he will have my record expunged. (Even the original arrest will be removed from my record.)

My lawyer talked to the district attorney this morning, and as he put it, "No one wants to prosecute you." He started to say, "Even the police officer ... ," but then his phone rang, and he never finished. I think he was going to say that even the police officer just wanted to put it in the past and forget about it.

Thank you, Lord!

Hopefully, I can go back to trying to be part of the salt of the earth rather than worrying about assault charges.

Actually, I wasn't worrying. I was told months ago that McNairy didn't want to press charges, but "the salt" and "assault" seemed too good to pass up. Sigh ... Now you know why I didn't go into  comedy.

Exercise Update

I took today off, as far as exercise go. Yesterday was a hard day, and rest can be as much a part of getting stronger as the workouts are.

Um, as long as you actually have workouts to go with the rest!

Quick story about that. I read a book, I think called Four-Minute Mile, about the pursuit of the four-minute mile, finally accomplished by Roger Bannister. His coach openly disagreed with a running theory suggesting that after a long period of hard training, it's good to take a few days off.

He had three runners training together in pursuit of a sub-four mile. Part of their training was to run ten quarter-mile intervals. This involved running ten very fast quarter miles with a quarter mile joy in between. The goal was to get all ten of those quarter miles in 59 seconds, but they were stuck at 63 seconds.

The coach, so opposed to the philosophy of a week off as part of training, nonetheless took a break for six days and went hiking in the mountains with his three men.

When they got back, all three of them ran ten 59-second intervals.

Hmm.

Just a bit of training philosophy for you. My goals are much more humble than a four-minute mile, but rest is rest, and overdoing it is overdoing it, and that applies to everyone.




Wednesday, January 23, 2013

Exercise Update

Good day today. This is a quick post on my way out to go box the punching bag for 5 minutes.

I walked around our warehouse 10 times today (about two and a quarter miles). In fact, one lap I ran all the way around. So that's the new standard. I can circle the warehouse running once, which is almost a quarter mile.

I timed 5 laps. which is about a mile and an eighth. Unfortunately, I don't have a more perfect distance. I was thinking I could beat 17 minutes, but inwardly I was longing to beat 15 minutes.

15:03

Not 15 minutes, but impressively close. At least I was impressed. Nothing like five years ago, when I could have run almost two miles in that time, but hey, maybe that means I'm halfway there!

I also got in some weightlifting. I dropped the weight on the bar in my office to 55 pounds, so that I'd be able to do rows and presses without worrying about hurting myself. Two years ago, before leukemia, that bar was 80 pounds, and I had no problems pressing it a dozen times.

That's okay, I knew I'm still not as strong as I used to be.

It's so exciting being able to exercise, period! This kind of thing has been very painful or downright impossible for most of the first 11 months after transplant.

Someone suggested holding a "Survivor's 5K." That would be great. Maybe I could find a place in Jackson, which is right on I-40, and get people to come from Memphis, Nashville, and other places. If any cancer survivor who reads this blog would be interested in participating in an event like that, please let me know. I'll make a list, and with a little help, I bet we could get working on it.

Oh, GVH of the eyes is doing much better with the prescription of Restasis drops that I got. I am no longer wearing sunglasses indoors. My skin is clearing up, too.

Gotta go! I have work as well as boxing to do!

Monday, January 21, 2013

.2 Miles; Just a Little Left to Go

I realized there are still things to talk about, such as regaining fitness and the new normal of life.

I've actually gotten a little bit fat now, 5 pounds overweight probably, and Dr. Savani told me, "Lose the gut," at my last appointment. He then explained that back in the day when transplant patients were not monitored as closely as I'm being monitored, the fatality rate from cardiovascular disease was 16 times higher than the general population.

This is me. Hat covers the side of my face for sun protection. Gloves have tips so I can use my iPhone even with the gloves on, again for sun protection. Sunglasses on a cloudy day because of GVH of the eyes. And I'm still growing into my pants as my legs get stronger. But I'm smiling!

He wants to be "aggressive," he said, with keeping that away.

I don't mind that. I've been an avid exerciser most of my life. The problem since the transplant is that my body has consistently found some new, creative way to prevent walking and jogging and make exercising in general painful.

There's been sheer fatigue and weakness, so much so that climbing three or four stairs was difficult. I worked at it, and a couple months later I was going up six flights of stairs, seventeen-steps each, and even running a couple of the flights.

Since things have been better the last month, I was out walking my dog the other day when it was sunny. Beautiful!
Then the hemorrhoids kicked in, painful and constant ... for five months! It didn't stop me from exercising, but it limited it enough that I didn't make much progress.

Somehow, they slowed down, a lot, and I went back to it. Then I walked and jogged a mile one day, ran sprints the next, and walked four miles through a state park the day after. The day after the state park, my calf was killing me. An ultrasound showed I didn't have a blood clot, but it took two weeks to be able to walk normally. The pain came back a couple days after it left, and this time it was a blood clot. Off to the hospital and four weeks of not being able to walk for longer than one minute!

I got through all that in November, only to be greeted with the worst ingrown toenail of my life.

Was God simply opposed to my getting back in shape? My plan had been to run a half marathon in November, not to be limping around on a blood clot and ingrown toenail, losing stamina rather than gaining it.

Somehow, since the second week of December or so, I have been relatively pain-free. My energy has been immense compared to the rest of 2012. No pain pills and only rare naps needed.

Not to say that everything is gone. The ingrown toenail is now ingrown toenails, and it's being managed, not cured, even with the help of a doctor. I have these thin, razor-sharp toenails. I always have. I did start taking beef gelatin last week to try to thicken them. We'll see how that goes.

Yesterday I kicked a punching bag at work—a punching bag we bought and hung up in back of the warehouse for our fitness and self-defense training pleasure, and I forgot to curl my toes back on one of the roundhouse kicks. Oh, the agony!

Fortunately, I was able to take it out on the punching bag even as the pain coursed through my whole body.

However, I am managing the ingrown toenail pain, and my new problem, GVH (Graft-vs.-Host) of the eyes, isn't stopping me from running. If the wind is blowing, I do something inside.

GVH rash on my calves and feet. The steroid increase Jan. 11 cleared it right up.


I work out on the punching bag at work once or twice a day when I'm down there. I have a barbell and dumbbell in the office which I do quick workouts with here and there. If the wind is not blowing, I put on wraparound sunglasses, and I walk around our warehouse, running where I can. I can only run halfway around the warehouse, not much over 100 yards, but hey, it's a start. I even played a pretty decent game of soccer on a very small field out back with two of my sons and three other warehouse workers.

My new office includes a cot and a barbell.
I've borrowed some exercises from an "Insanity Workout" video I saw some guys doing when I was living in Nashville. I was at the apartment's exercise room, and three young men were doing crazy, fast exercises. It was so intense, one of them kept dropping out to catch his breath. At that time, I could have kept up with them for about 10 seconds, then had to quit.

So occasionally my kids find me in my room, skipping sideways, touching the floor, then skipping back to my original position. Or they find me going back and forth, switching between roundhouse, side, and front kicks. Or pushups ... or lying on my stomach looking like I'm trying to swim across the floor ... or trying to do a yoga pose on one leg.

That's the overview. Here's the situation.

Today I ran .2 miles. Not two miles, but point-two miles. 1056 feet, 352 yards. I ran it slow, but I ran it all, even with a little uphill. I did it at the end of a mile walk with my dog, and I had even included a little running, and a fast-as-I-can run up a short but really steep hill. I didn't make it all the way up the hill, but I was shocked to find out I could run over halfway up it.

Very exciting. Having the ability to exercise without sharp pain in some essential part of my body really makes it easier to exercise. I'm making a little progress, and I breathe really hard every day and get my heart rate up for a half hour or more every day.

Lookout, Badwater, here I come. It may take 10 years, but I'm gonna get there!

I am two days past the one-year anniversary of my stem cell transplant.

"To realize one's destiny is a person's only real obligation. All things are one. And when you want something, all the universe conspires in helping you to achieve it." ~Paulo Coelho

Our great God, who makes the rain to shine on the just and the unjust, is the source of that "conspiracy." Jesus Christ's apostle puts it this way, "I can do all things through Christ who strengthens me" (Php. 4:13).

Wednesday, January 9, 2013

Blastic Plasmacytoid Dendritic Cell Neoplasm Study

A friend told me that Dr. Frankel asked if this could be posted on any Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) blogs. In the end my BPDCN diagnosis was retracted and changed to Acute Undifferentiated Neoplasm, but I know there are BPDCN patients who find and read this blog. So ...

Blastic Plasmacytoid Dendritic Cell Neoplasm Study


http://www.sw.org/Dr-Arthur-E-Frankel

Arthur Frankel, cell number: 254-718-0781,
emails are afrankel@sw.org and arthur.frankel@utsouthwestern.edu

The protein drug, DTIL3 or SL-401 is a fusion molecule containing the catalytic and translocation domains of diphtheria toxin and human interleukin-3. The drug was administered to close to 50 AML and MDS patients in a phase 1 trial at doses of 1-12.5ug/kg IV over 15 minutes daily for between five and fourteen days. There was a 10% remission rate and toxicities were vascular leak syndrome, acute infusion reaction, and transient transaminasemia. In a pilot study, two patients with BPDCN who were refractory to allogeneic stem cell transplants received DTIL3 at 11.5ug/kg for three to five doses over ten days and both patients achieved complete remission. Both remissions are ongoing at 2+ and 3+ months. Side effects were limited to the same toxicity profile previously seen in the AML/MDS phase 1 study.

We are actively seeking several more BPDCN patients to confirm this activity.

http://www.drugs.com/clinical_trials/stemline-therapeutics-inc-announces-presentations-sl-401-updated-clinical-trial-results-acute-14810.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+Drugscom-ClinicalTrials+%28Drugs.com+-+Clinical+Trials%29

Quick Update on Me


I'm going to my one-year post transplant appointment tomorrow! That's actually exactly a week shy of one year.

I'm still alive, and still in complete remission, though they'll verify that tomorrow with my last scheduled bone marrow biopsy.

I'm having a lot of skin issues. I have dry skin, rashes, and a weird red color under the skin on my lower legs and sometimes my arms. The red color consists of spots that are sometimes so close together that they make one blanket color. Yesterday, those covered more than half of my lower legs, but they're a lot better today ... first time in a month that they look significantly improved.

Those spots don't hurt or itch. They're just they're, and a good massage clears up about half the red spots, sometimes for a couple hours, but they always come back.

They started up the day of my last appointment (in November). In fact, I didn't know my calves looked like that until the nurse practictioner asked to see them. She and the doctor were a little taken aback, so they increased my steroid dose for a week or two.

They really haven't changed since then no matter what I've tried. I've tried massage, steroid cream, a couple different lotions, and even rubbing down with an exfoliation pad in the bathtub. I've also been pretty faithful about exercise--walking, running a bit, and calisthenics--for the last couple months because I haven't had bizarre problems preventing me from exercising. I even played soccer with the warehouse guys, including two of my sons, yesterday and almost scored the first goal--missed by no more than six inches on a long shot. Bad miss, we lost 1-0.

That's it. More after the appointment.

Quick Update on Jennifer Sample


Jennifer was a doctor, manager of the cancer pharmacy at Vanderbilt, who contracted leukemia and had a bone marrow transplant just four days after mine. Her first chemotherapy was given in the same room at Vanderbilt that I received my first chemo in, and she went in the room no more than a week after I left it.

Jennifer relapsed in the fall, a fact that hit very close to home for me. Her leukemia was "biphenotypic," which means that it had signs of both ALL (Acute Lymphocytic Leukemia) and AML (Acute Myeloid Leukemia). Mine was "undifferentiated" and it, too, had signs of both ALL and AML, puzzling the doctors about what approach to take in treating me.

In December, she went to be with the Lord. I had posted on this blog that I was confident God was going to let her recover, but it appears the recovery was not what I expected.

The Scriptures say that to depart and be with Christ is "far better" (Php. 1:23). Her sister Lauren has a beautiful, if somewhat heart-breaking, post about Jennifer here.