I have become friendly with the people who run the blood lab here in town. They are used to my long list of tests, which are kept in a fat plastic sleeve in the “standing order” file. At various times Dr. Belle, who is two hours away in Scottsdale, has faxed them lists of tests. Laid side by side, these faxed papers looks something like a menu out of a Chinese restaurant. When I go in -- which was once a week until recently, now it’s twice a month -- I tell the people in the lab which tests to run. Dr. Belle gives me updated instructions and also doesn’t mind if I add one on my own if it’s something I’m curious about. The tests are all stat, with a copy to patient. I go in the morning, I get the results in the afternoon.
When I went in on Dec. 31, my red counts were noticeably up from the previous time, which was a nice way to ring in the new year. It made sense: I’d had my chemo, it was still working in my system; hemolysis had ended some time ago and continued progress was logical. It fit the picture of how these things are supposed to work.
Then, on January 11, my red counts were noticeably down, virtually identical to where they’d been on Dec. 19. Dr. Terry Hamblin is forever advising us patients that one cannot determine a trend in one blood test; anomalies happen, spikes occur, labs can have a bad day. You need to look at three in a row to see if something is really happening.
All that is nicely rational, but if you have been in the grip of severe hemolysis, your animal brain starts lurking just below the surface, alert to any sign of the return of the AIHA beast. Not that I had been noticing orange urine or pounding in my ears, but in the initial stages hemolysis can be gentle enough to fool you. Having relapsed twice, I am a little paranoid about it happening again.
So when I went into the lab last Wednesday, I knew I was going to learn something important: either things were going up, or they were going down.
The tests were “just” a CBC and LDH, which occasioned much mirth on the part of the techs, who have drawn as many as seven tubes from me on occasion. The CBC, of course, indicates how well the reds are doing, as well as the lymphocytes (we don’t want those to do well) and the platelets. The LDH measures cellular debris, and a high amount means there is hemolysis afoot. (During the height of my hemolytic crisis in October, my LDH was twice normal.)
So they drew the blood and I went about my business, which included any number of errands before returning to the lab that afternoon to get the results. At every stop -- bank, recycling center, post office, thrift store donation center, supermarket -- I was thinking less about the task at hand than I was about the results getting closer. The blood lab was my last stop; it was important to get the other errands done while I could still focus, in my ignorance of the results, on doing them.
When I walked back into the lab to get the envelope containing the single folded sheet with the numbers that might make or break me, I was reminded of the Oscars. “The envelope please . . .” Would I be winner or a loser?
I also thought of Johnny Carson, whose old Carnac routine -- holding an envelope to his head and reading the punch line of a joke, after which he would open the envelope and read the set-up -- appealed to my somewhat black humor about the wiles of the cosmos. Would the joke be on me today?
The envelope with my name on it was pinned to the bulletin board; the tech unpinned it and handed it to me and told me to have a nice day.
Usually I read the results as I walk down the hallway leading to the exit, but today I decided I couldn’t walk and read at the same time. (God knows how I would have made it out of there had I also been chewing gum.) I needed to be seated; I would sit in the car.
And that’s where I got the news: We have a winner!
Not only were my fears unfounded, things looked a lot better than expected: My hemoglobin was 13.2, the highest it has been in more than a year. Hematocrit was 36.9, RBC 3.81, LDH normal, platelets a respectable 168. Even the lymphocytes were still milling around in a stable fashion at 22,000, which for me is low.
So, with the anxiety gone, I felt like dancing. Which is hard to do in a Prius.
It was just another day with CLL, of course. We’ve all been there: sometimes there is bad news and sometimes there is good news. The waiting and the worrying are all part of the “new normal.” As is often the case, my day was a mix of the mundane and the momentous. No wonder it often ends with wine.
I've go to admit it's getting better: More good news about my CLL (chronic lymphocytic leukemia) - Most of my blog posts can be followed here. The full story of my CAR-T therapy, the incredible rollercoaster and the amazing results can be found there I...
4 weeks ago