Typical of a Mayo visit, I arrive the evening before because the first appointment is early the next day. It's still light outside, and I find my hotel is a bit farther from the clinic than I had intended. But the weather seems OK, and I take an early evening walk with an eye toward walking the next morning. It's good--mid-30's and some of the snow is melting . . . never mind that this is April, I can deal with this.
My first "appointment" is at 6:45 AM. It's really just to stand in line for blood draw, but the line gets long as the morning progresses, so I don't want to be too late. The hotel offers a shuttle at 6:00, but that's a little early in my view, given that I'd be arriving at 6:10 at the latest. Also there is snow falling and winds around 30-40 mph. Walking is out, I take an Uber.
I have a couple of hours to kill between phlebotomy and the doctor visit. One interesting feature of the Rochester campus is the extensive "subway" system connecting many downtown buildings with the clinic. I discover several new subterranean passageways, many with shopping opportunities (although few of these are open at 7:15 AM). It turns out that it is possible to walk from your fasting LDL blood draw straight to Dunkin' Donuts without going outside into the horrible maelstrom (but you can walk!). I wouldn't say it was easy, as it took me 3 years to figure this out. After breakfast (not from DD), I find a place where I can buy a new belt for less than it would cost me (via Uber) to recover the belt I left behind in the hotel.
One of the best things about Mayo is that your lab results are posted in real time as they are read. By the time I'm eating breakfast I can review my cell counts (all fine, platelets and red cells still a little low, but just where they've been parked for the last two years), and basic blood chemistry (totally unremarkable).
By the time I'm in the exam room, the number I've been waiting for shows up. It's the ratio of kappa/lambda protein in my blood. It's been trending downward since my stem cell transplants, from a high in the 100's when I was first diagnosed, to 2.6 a couple of weeks ago. The ideal is 1.0, because for patients like me the kappa protein is the one produced by the tumors, while the lambda protein is produced by normal plasma cells. There are also presumably normal plasma cells making kappa, in about the same proportion as the the lambda-generating cells, so if the ratio is close to 1.0, the tumors are effectively silent (not gone, just not causing any major mischief).
Amazingly, the ratio is 1.1. My doc comes in moments later, and I have the rare experience of telling her the good news. It's a nice moment, big smiles, let's keep doing what we're doing. The Wylie Coyote image (off the cliff, not yet falling) remains, but the impending fall seems farther off now.
For you data fans out there (anybody?), here's a chart of the kappa and lambda numbers post-transplant.
Something's funny here. The kappa number keeps falling, as we want it to. The lambda number has been very stable, and lower than normal, the whole time. Because the chemotherapy, in part, depresses lymphocytes in general, it's not surprising that the lambda number, representing the activity of normal plasma cells, is lower than the ideal. In the last two weeks, it seems, the lambda protein has doubled, while the kappa has dropped a bit, so my ratio of 2.6 from March 15 has become 1.1 on April 6. Is this real?
Probably not. Every measurement carries some unknown amount of error, and the most unusual- looking measurements are much more likely to be in error than are those that fall in line with other observations. We'll see in a few weeks, but I'll bet the next measurement will put the lambda back down a few notches, putting the ratio back up around 2 or so. In the end, it probably doesn't matter much--the news is still good.
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