Sunday, March 11, 2012

Better All the Time

There's a Beatles tune that goes:
I've got to admit it's getting better
A little better all the time
The tune keeps running through my brain, and I like it!
The new (second) antibiotic and a twice daily saline rinse (disgusting and uncomfortable as it is) seem to have knocked out my sinus infection.
Every day I feel stronger. My appetite has returned. I've gained back five pounds. My hearing is getting a little better every day.
The weather has been in the 50s, so every day I take a walk, a bit longer each day.
I am not ready to proclaim Mission Accomplished yet (sort of a bad history to that expression, anyway), but I am very encouraged and thankful.
And, oh yeah, the CLL is definitely in retreat---at least swelling-wise---thanks to the experimental drug PCI-32765 and the National Institutes of Health.
We'll find out in July if it really stopped the CLL at its source (the bone marrow) or whether the PCI is merely counter-acting it . Either way is a big improvement over where I was a month ago.

Tuesday, March 6, 2012

Dare I say it? Progress.

At the risk of jinxing things, I think I can say I am seeing improvement.

Little by little the sinus infection seems to be losing its punch. I still can't hear much, but even so, I can see and feel the difference: less crud coming out, no runny nose, no fever the last two days (although it has been so cold that I still walk around the house all bundled up), very little coughing.

All of that has meant I am gradually gaining strength. In the mirror I still look like a cadaver, but one with no swollen lymph nodes and one who gained a couple pounds the past two days.

I even felt strong enough to take a drive last night in Nancy's car to go buy a new one for myself---seeing as how Farm Bureau "repossessed" my company car. Slightly insane, but I felt strong enough to do it.

The episode reminded me of the old Bert & I "Down East humor" stories. There is one story where an old geezer walks into town and chances to meet the undertaker. The undertaker quizzes him about his health and his age and concludes, "Virgil, you know? I think it hardly pays you to go back home." (It somehow loses its humor if I have to explain it.)

But, I thought, yeah, it pays me to buy this. I'm planning on lots of miles yet.

For that I have to thank the people at the National Institutes of Health. Not only did they hear my plea to immediately start on the clinical trial of PCI-32765 (which seems to be producing amazing results so far), but they correctly diagnosed my sinus infection and persistently followed up to get the antibiotic right.

In contrast, consider this: the coughing started in late September. Since then, locally, I had seen two GP doctors once each and one respiratory specialist twice, had two lung capacity tests and one chest x-ray, and not once did any of them consider that the problem was not in the lungs, but in the sinuses (despite the fact that sinus infections are common among CLL patients) with a post nasal drip causing the cough. Since September all of them had missed the fact that I had a specific kind of infection that causes pneumonia, the leading killer of CLL patients.

The people at NIH caught it on day 1.

Yeah, I owe them a lot.

Friday, March 2, 2012

We need some new blood around here

Back in the days of yore, before Nancy and I had bought the hilltop farm and we were summering our sheep on small borrowed pastures around the edges of the Village of Candor, we had a black sheep or two.
You know that expression, "The black sheep of the family?" We discovered some weird truth to it. Over on the right side of the hillside would be 20 or 30 sheep grazing contentedly. Way over on the left side, by themselves, would be the one or two black sheep.
When it was time to move them all to fresh grass, we'd open the gate and they'd all run through, except the black sheep. They'd run the opposite direction. If it was a black sheep, you could bank on it, as though the circuits in their brains ran counter clockwise.
Here's another expression: "We need some new blood in this organization." I now know this is more than a trite turn of phrase. For the first time in my life, I received a transfusion yesterday and the day before. If zero = dead and ten = perfection, I would rank my energy level before the transfusion at about 1.5 and now, 24 hours after, at about 5.
At the National Institutes of Health, I was given the transfusion with the goal of boosting my immune system enough to help beat down this unending sinus infection---the infection being a common side effect of CLL due to the impaired immune system. They also sent me to one of their in-house ear, nose, throat specialists, who used a little "micro vacuum" to suck all that yucky goop out of there and get it analyzed. They also switched from sulphamethoxazone antibiotic to Levofloxacin, which I also think is making a difference.
All of this might seem tangential to the CLL and the clinical trial of PCI-32765. It is. But that's how it is with CLL: It's the tangential stuff that will kill you.
I have to say the experimental drug PCI-32765 so far has been darned near miraculous. I feel better today than I have in weeks. I don't think I'll make the Tour de France this year, but it's looking good for 2013.