Wednesday, July 20, 2011

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!


  1. Shammah, I love your idea about the IV during a race. But I do have to tell you that if you're wanting to run the badwater race, it won't work. Look what I found in their rules: "I.V.s (intravenous fluids) are not permitted during the race. If a racer receives an I.V. during the race, for any reason, then that racer is disqualified and must withdraw from the race and the race course." Sorry to down your great idea, but thought you'd like to know. ;)

  2. Very sad.

    I have to suppose it's probably illegal period.

    The Badwater medical person will give IV's to distressed runners if they're in bad enough shape. But once that happens, it ends the race for them.

    Badwater is definitely still on the menu, but the qualifications keep increasing and the competition to get in the race at all is stiff. Hopefully, leukemia will give me a leg up!