Ups and downs

It's been a little too long between posts, which usually means that nothing has happened, but that's not  that exactly the whole story. We've haven't done any major traveling since our trip to Yellowstone, and that's a shame because the weather this summer in Louisville has been anything but pleasant. We have managed to find a weather pattern that combines week-long hot dry spells with periodic bursts of very heavy rain. Drought and flood take turns, and going outside manages to combine intensely hot sunshine with dew points comparable to those of rainforests. I was going to say redolent of rainforests, but really rainforests smell much better (in my limited experience). Here's what my phone was telling me it "felt like" in June:

Now, I don't think it felt that bad, because I think that 130 degrees would feel a lot like dying, and it wasn't really quite like dying. Also that weather station might have been a little under the weather itself. But it was damned unpleasant, anyway. Also, that was at 7:30 PM!

(Almost) enough weather. I'm writing this as Hurricane/TS Florence is doing its best to wash away the Carolina low country. We had a visit from the remains of Gordon last week, which caused our basement to flood (a recurrent problem, but we remain optimistic that there will be way to solve it that doesn't involve setting up wading pools under the leaky gutter:

The only catch is that you have to empty them every 5 minutes or so. It's a minor issue compared to being trapped in a flooded house with no way to get out, but this is Kentucky for God's sake.

So I went to see the hematologist at the beginning of August, and everything looked good, except my hemoglobin was low. That's a recurring problem for me, the result of never having quite enough red blood cells post-transplant. We have traveled back and forth between high and low elevations this summer, with one long trip from late June to mid-July, and a short trip at the end of July. The longer trip resulted in a brief period where my hemoglobin was actually in the normal range (breahting thin air results in increased production of erythropoietin, which stimulates the bone marrow to produce more red blood cells). The erythropoietin spikes quickly, but it takes a long time for the marrow to actually ramp up production. I guess we were on the road long enough on the first trip to get some real improvement. And I felt it.

The second trip, when we flew to Jackson, spent 4 days in Yellowstone, and flew back, apparently had the opposite effect, leading in just a few weeks to the lowest hemoglobin reading I'd had since recovering from the second transplant. And I felt that, too. Still riding my bike, but definitely getting more winded. Even climbing the stairs  could get me breathing hard. Meanwhile the Kappa protein in my blood had ticked up just a little bit, which got me to the medical literature in a hurry. What constitutes a relapse? I was pretty sure it took more than what was happening, but hadn't ever really looked at the definitions.

I was reassured to find that the change in Kappa was an order of magnitude smaller than what would be considered clinically significant. And surprised to learn that a drop in hemoglobin as large as the one I had experienced was considered an indication of clinical relapse. So I scheduled a new appointment with the hematologist. Yet another surprise--actually two--1) nobody was worried about my hemoglobin (except me), and 2) while my hemoglobin had recovered somewhat, a couple of liver enzymes (AST and ALT, especially the latter) were well above their normal ranges. In 3+ years of obsessive cataloging of lab results, these numbers had barely budged, so it seemed that something was up.

I won't say that I'm not one to jump to conclusions, but Louisville is currently home to the most significant hepatitis A outbreak in the U.S., and I was certain that I had hep A. The hematologist was not convinced, and told me to stop the chemotherapy regime until further notice, and ordered some C/T scans of liver and bone, as well as a complete set of hepatitis (A/B/C) tests. In the end, everything was negative, and the liver enzymes came down on their own. I've resumed chemo, and the last set of labs looks just like all the others (except the anomalous August results).

It was maybe just a passing virus or something.

Yesterday I did a "Bike the Bluegrass" tour, a charity ride for the local chapter of the American Lung Association. It was in an area of northern Kentucky that I had passed through or around, but hadn't explored at all. Really beautiful rural country, with blessedly little traffic. My companions were younger by one or more decades. Mercifully, the most enthusiastic 2/3 of them had the option of completing a 100 K course instead of the 60 K ride I chose, which was more than enough for me. It was ungodly hot and the uphills were surprisingly challenging. I was reminded again that I need to add one or two lower gears to my bike if I wish to continue doing this sort of thing. But there were no disasters, no broken ribs, and some really sweet descents to match the grueling climbs. I just hope they schedule it for a few weeks later next year.