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.

Update

A friend from California asked me about depression and fear of relapse after transplant. I am going to copy my email to him in my next post, which I'll do immediately after this one.

This one's an update.

I went to Vanderbilt on Friday. For my fellow transplant recipients, I will give some details. 1 year and 3 weeks after transplant, my hematocrit has been stuck at 39% or 40% for about six months. For those of you who don't get given those numbers every day, I'm about 2 pints low on red blood cells compared to the average man.

My platelets got into the normal range, over 130, about the same time, and they have climbed as high as 165 or so, but now they're back at 136. They jump around in that range every visit.

My white blood cell count has been up to 12.2, which is abnormal high, but is usually near the middle of normal range. The percentage of the types of white cells--monocytes, leukocytes, neutrophils, basophils, and something else--fluctuates with no rhyme or reason. At least one or two are abnormal high or low every time.

None of this bothers my doctors or the NP. They are happy with all of that.

Exercise

I have been able to exercise almost every day for six or seven weeks. I am THRILLED. Last week I did 5 laps around our warehouse, a little over a mile, in 14:17, an improvement from 15:03 the week before. I ran one lap all the way around, so I can run a quarter-mile now. It's my legs that don't want to run more than that, not my lungs.

My fingernails and toenails have always been thin, and I tiny dagger separated from my big toe three or four days ago and dug itself into my toe near the end of the nail. I dug that out yesterday, and I am back to walking without pain. It took those three days to hurt bad enough to have to do something about it. My crumbly toenails, which are worse than they have ever been despite the fact that I take beef gelatin every day, have given me ingrown toenail trouble for three months now. I seem to finally have it under control, but I won't be able to keep it that way if my big toenail just crumbles whenever it wants.

I have a barbell in my office and a dumbbell in my bedroom. I've been using them diligently, and I am almost back to normal strength. Only took a year. I never was all that strong, anyway, so that made for a lower goal to achieve :-D.

I think I'm back to where I could beat my 14-year-old son in arm wrestling. That might last a year, as he is growing as fast as any of my children have. I am, however, hoping to stay ahead of 10-year-old Leilani for a long time. We'll see.

My wife is coming to pick me up. We dropped off a car to be repaired, then she went shopping and left me at Burger King, where I had a whopper meal with large onion rings. That will really help me lose weight per Dr. Savani's instructions, huh? At least I drank only water!

I have to wrap up and ride home with my wife, so I hope I remember to put up that email that I said I would. It's a discussion of depression and how to deal with it that worked for me.

July 20: The Schedule

Sorry for posting more than once per day. I have the time to do so, and it seems like there's so much to talk about.

I just got back from the family room. After I walk a mile and bike three (on the exercise bike, not outside--can you imagine me with the IV pole biking through traffic?), I like to go to the family room, where every day I've managed to meet one different patient.

Photo by Nichole Park

Today it was Jerry. Like me, he's young for a leukemia patient. Unlike me, he's physically beat up because he was a coal miner. He's from the Kingsport, TN area, but he actually lives in Virginia. Kingsport is right on the border. If you don't know, if you hear coal miner, then Virginia is one of the first states that come to mind.

Taken on my iPhone in Sevierville, TN

Jerry's got AML. Nonetheless, as with me, the docs tell him the goal is bone marrow transplant.

He told me his whole story from the beginning of the problems to his diagnosis on June 28, just four days after mine. He got in the hospital a couple days before me, and he's two days ahead on his chemo. He's got heart problems, so he just barely qualified to do this regimen. He tells me it's the most toxic chemo given for cancer.

I didn't know that.

He told me several other things, and I told him, "Wow. You asked a lot more questions than I did." He told me he was an arsenal of questions.

He also said the toughest part was boredom. I told him I'd send him some of my visitors. If you come to visit me, don't let me forget he's in room 7. He's a real talker, so even if you can't carry conversations, don't worry ... you won't have to.

I try to start my day around 5:30. Because I started it at 5:20 today, I found out the hall lights come on at about 5:29.

My walking track

The hall is a big square, and the patients are encouraged to walk laps. They accuse me of running my laps rather than walking them, but I am legitimately walking. (Without doing my hip-swinging speed walk, which will make Janelle very happy.) This morning I accidentally clipped a door jamb after going around a nurse, and she hollered after me, "You know, we do give traffic tickets around here."

I walk 30 laps, which is just over a mile (26 laps to a mile). They have a chart on the wall which shows distances to various Nashville attractions. So by walking the laps, you can pretend to have reached these attractions by foot.

Jeremiah Briggs, used with permission

That doesn't do much for me.

Before I do the laps, I get coffee started in the family room. So when I'm done, it's ready, and I pour myself a small cup and take it to the exercise bike. I do three miles on the exercise bike, with the coffee in my hand and my IV line thrown over my shoulder to keep it out of the way. Yesterday I tried to set a record for a mile and for two miles, but today was an easy day. I just enjoyed it.

I have no idea whether this exercise helps. I know that our muscles make extra mitochondria in the cells when we exercise, and I assume my body can still do that. But as far as cardiovascular, it seems like there's some blood changes involved, and I'm having to live off other people's blood.

Hmm. Who knows?

After the bike ride, there's an arm machine I get on, just for a couple minutes. No cardiovascular there, just a mild attempt to have some semblance of non-flabbiness in my upper body.

Then I heat a cup of tomato soup in the nutrition room and take it to the family room and hope to meet another patient.

Funny, the previous two days, I didn't meet a patient, but two brothers, one each day, who are taking care of their 74-year-old father. They are very different from one another, but not in voice or accent, so I knew immediately the second day that this was the brother mentioned by the brother I met the first day. (Wow. I hope you can decipher that one.)

Today it was Jerry. Three days ago it was Crystal, who has already gotten a stem cell transplant, just Friday night, and she's doing great.

It makes for a great morning.

I did make a stop this morning before going to the family room. I stopped at the nurse's station to suggest a new business.

I don't know if you know this, but one of the difficulties of ultra-marathon running is hydration and electrolytes. There are many powdered drinks and gels that are made to help an ultra runner maintain proper electrolyte balance while he's running. In fact, a number of ultra runners use Pedia-lyte, which is a drink meant to help babies maintain electrolyte balance when they have diarrhea.

The reason that many use Pedia-lyte is because the other drinks can be hard to digest when you've already run 20, 30, or 40 miles.

I'm no ultra runner (though I do have one small ultra under my belt from 2006). At the moment, I'm no runner at all. But I recognize the potential here for this machine I'm on. It steadily maintains both my hydration and my electrolytes without my drinking or eating anything!

Imagine if you made a backpack version for ultra runners! They already carry small backpacks with their hydration drinks in them. (Camelbak is the brand name that's become synonymous with those "hydration packs.") The pump is plenty small enough to be almost unnoticeable when added to all that water weight.

And as far as getting a PICC line installed to make use of it? Those ultra runners are out of their minds. For the sake of performance, most of them would gladly pay to get a PICC line installed permanently.

And what a great publicity fundraiser for cancer research!

July 19: Getting in Shape and Having Fun

I'm sure this can't keep up. Doc Halliday did warn me that a couple weeks from now is the rough time.

On the other hand, I'm back at 25% "hematocrit," which I still can't pronounce, but which I do know means I get blood again today. Nonetheless, I went ahead and set a new standard on the exercise bike and walked a mile and a half this morning. On the bike, it was 1 mile in 3:24 (after a warmup) and 2 miles in 7:14.

If that doesn't seem like very good times, keep in mind:

1. I've never been very fast.
2. I have approximately half the red blood cells I'm supposed to have.
3. The bike's seat can't be adjusted, and I'm just about hitting myself in the chest with my knees.

For all the incredible medical equipment they have here at Vanderbilt, not one piece of exercise equipment--there are three--is in full working order. In fact, only the one bike I'm riding even has a working screen. The other bike works okay manually despite the fact that nothing electrical works on it, and the arm machine is only manual. It, too, is beat up, though. You can't read its instructions or adjustment knob. You can read its manual speed gauge. You just can't understand it because you can't read the instructions.

I don't know what's supposed to be happening here, but this is like some dream vacation. I work on blogs and YouTube videos. I talk with some of the most wonderful people I've ever met. I spend time with my wife.

I miss the kids, of course, but on the other hand it's only gone one day without them so far! Until yesterday, they were here every day.

I guess being tethered to the IV pole is an inconvenience. And the plastic wrap over my right arm in order to shower is a serious inconvenience, as is threading the IV's through my sleeve in order to change my shirt.

I am fixing that last problem by having modified shirts sent from home. They've been cut and velcroed so that they can be put on without having to thread IV lines.

The nurse saw me walking this morning, and she said, "You're not walking; that's running." I told her, "I'm just faking the leukemia. I needed a break from work, and I heard 11 North had really great service, so here I am."

Some Stats

White blood cell count is down under 1 this morning. That would be really, really bad if that wasn't the point. I think the goal is basically zero. It was 1.3 yesterday. I think 4-10 is normal.

Hemoglobin is 8.4 or something like that. It hasn't been dropping. That number has a lot to do with how much I can exercise, because that's the molecule that carries the oxygen in the red blood cells. Normal for a guy is over 14.

The two numbers the doctors watch are the hematocrit and the platelets. The hematocrit is the percentage of your blood that is red blood cells, and it should be about 45 or so. At 25% or lower, they give me blood to give me a boost. The platelets are supposed to be between 150 and 400. (Yeah, big gap.) Mine's something like 33, though it was only 31 yesterday, so I guess I can still make platelets!

Platelets are really important because they are what create clots to stop you from bleeding. Below 20 is really dangerous and can lead to spontaneous bleeding and make it impossible to stop bleeding if it starts. The hospital, working with bodies like they are car engines or something, can give me just platelets, too.

It's weird how much they know. I suppose it's even weirder just how much is left to find out. We live in complicated bodies in the midst of a complicated universe.