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.

September 11: The Odd Nature of Being Low on Blood

It's September 11, 2011. It's the 10-year anniversary of the 9/11 terrorist attacks. I'm not sure what to say about that except that I hope the good things that came from 9/11 won't go away. Those good things are what we have to mitigate the bad.

View over the apartment complex this morning

I saw an email from the founder of meetup.com, an online service that helps people spend time together offline, saying that meetup.com was a product of 9/11. It was used to help people get together in the real world after the traumatic events and to continue to meet and provide activity and strength for one another.

Did you get a little close to someone because of 9/11? Did you think a little differently about the world?

It's not just churches that need revivals. We all need them. Precious and important moments in our lives just slip into oblivion, becoming nothing but nostalgia with no current impact on our behavior.

I like to schedule the occasional pep rally, with just me attending, so I don't forget every good lesson I've ever learned. Holding on to a few of them helps me live my life better today.

Well, that's sufficient for a blog, but I don't think I'll be able to write about this morning's "run" as well tomorrow as I hope to be able to this morning.

Just another picture at the apartment complex

The Odd Nature of Being Low on Blood

"Jogging" this morning was very rough. (For those of you who think jogging's impossible for you, let me recommend my web page on how to start jogging, on a web site I hardly every maintain.)

I felt really energetic when I woke up. I felt light, my head was clear, and I could picture my arms and legs pumping as I ran down the street.

Then I got out of bed.

I still felt clear and light, but now my body felt clear and my head felt light. It was a very pleasant feeling, really, surely aroused by a slight shortage of oxygen to the brain.

I went walking anyway. I canceled all ideas of running.

Not a bad walking spot, huh?

The weird part was how good I felt. I just didn't feel like putting any energy into my walk. I forced myself to anyway, doing a low-effort version of power walking for a half mile down to one end of the apartment complex.

At that point, I turned around and ran a little over halfway back, which would be about a quarter mile. It was very hard to get my legs going at first, but then I trotted comfortably, my breathing coming rapidly faster, and my legs feeling limper and limper with each step.

Finally, I couldn't keep going, and I slowed to a walk, still gasping for breath.

These cars sit at the end of the complex. Maybe the last apartment is for rich folks only.

What's funny about being low on blood, though, is that the problem is not your breath. Breathe all you want. It doesn't change anything because there's not enough blood to transport all the oxygen you're breathing in. So even though everything in me was saying, "Breathe hard, breathe hard," I could slow down to almost normal breathing and feel exactly the same.

On top of that, my legs, which were not sore or overwhelmed by a half-mile walk and a quarter-mile run, were nonetheless oxygen-starved. They weren't sore. They were slightly limp.

This may all sound scary, but you get used to this after just a few days. Simply slowing down to a slower walk let my blood catch up, while I breathed barely harder than normal. My legs went back to normal, and it was somewhat like I'd never exercised.

I walked to the other end of the apartment complex, which gave me a distance of about 1.5 miles at that point. I had walked more slowly, so I was feeling okay. It's the stress of the moment that's hard when you're low on blood. If you take it easy, you can keep going as if there's no problem.

As I came back from that end of the complex, I conducted a test. I power walked up a hill. It was very hard to make it to the top.

Now, keep in mind that 5 days ago, I ran all the way up a steep hill that is more than a half-mile long. Today, I'm struggling to walk fast up a hill that was about 100 yards long, or maybe just longer.

At the top, I slowed my breathing. Sure enough, it was no problem to stop breathing hard. Felt no different. Then I took my pulse.

Wow.

The convertible Beamer from the end of the apartments, in case you like such machines.

My pulse was going too fast for me to count. Nurses at the hospital refer to "chemo-brain" when a patient isn't thinking too clearly. I was having a flash of chemo-brain. I couldn't count the beat of my heart and pay attention to the seconds passing on the stopwatch on my iPhone at the same time.

Finally I figured out to look away and just count my pulse. When I did that, I found my pulse to be somewhere around 150. I'd already been stopped for a few seconds. It had surely jumped to near maximum climbing that hill.

The reason I'm bothering with details is to to tell you that a minute or so later, my heart rate was still at 130, but I was comfortably breathing, not hard at all.

Very weird.

I'm back at home now, obviously, since I'm typing on the computer. I feel normal. You don't need much blood to sit at a table and type. It's possible that the weirdness won't go on too much longer, though. They gave me a shot called Neulasten yesterday to boost my blood counts.

Of course, that was weird, too.

This coming week is when the chemo from last week is really supposed to take effect. It's supposed to be killing blood cells. Why are we boosting them while they're still supposed to be going down?

I have a suspicion that the doctors didn't realize how quickly I'd be able to get a transplant due to the cord blood. Adult stem cell transplants from a baby's cord blood is a relatively new technology. I suspect if they had known how quickly the stem cells would become available that they would never have done this second round of chemo.

Thus, the Neulasten shot is a way to get me out of this second round as fast as possible.

I'm just guessing, of course. I do know that getting a leukemia patient to transplant while he's still in remission is really important and probably all the more so because of the relationship between my leukemia and Blastic Plasmacytoid Dendritic Cell Neoplasm, a form of leukemia in which relapse has always been fatal.