Thursday, June 29, 2017

Infusion no. 2 and other diversions


I had a triple appointment yesterday (three and a half hours, with breaks): blood draw, then the oncologist, then infusion. The oncologist meeting is to go over the results of the blood draw and to discuss any side-effects I may be having. The levels of a certain enzyme associated with the liver are again high, even higher than they were before. As to side-effects, the concerns I expressed in previous posts were certainly overblown (I must sheepishly admit, baa baa). The most prominent of these is fatigue---more on this below---but there doesn't seem to be anything you can do about it. I've had some stomach upset too, but not too bad. Then you start wondering: gosh, I'm out of breath walking up this hill; is it the pembro or am I just out of shape? However, when I mentioned to the onc that I'd done a nine-mile Father's Day hike with Jessie, he kind of laughed and said he wouldn't worry about out-of-breathness.

The other new development is that I've been having various pains on the right side of the abdomen. My theory is that these are due to too much tossing the grandkids around and/or some of my blackberry hacking, both of which could stress rarely-used muscles. But since the right side is where the liver is, it seemed a good precaution to mention it to the onc. In particular, I've been having some weird pain in and around the right clavicle. The onc suggested two possible cancer-related explanations: First, the tumor in the liver could be pressing on the bottom of the diaphragm, which can cause pain---so-called ``referred pain''---in a completely different area such as the clavicle. Second is the worst-case scenario of cancer spreading to the bones. For that reason he wants me to have a bone scan.

Personally I think this is all a very expensive wild-goose chase; I'm guessing it's just some kind of muscle or ligament tear resulting from carrying around garbage cans filled with heavy weeds. On the other hand, I've had so many blood draws, CT-scans and infusions that I'm getting bored with them, and it will be interesting to undergo a new test administered by Nuclear Medicine (that's really the name of the department!). They inject you with something, I think radioactive waste from the Hanford Reservation, then you sit around for three hours to let it fully circulate (into your bones, I guess). After that they scan in some way. It will be interesting to see. Oh, I just got some new information: For the scan part you're supposed to drink lots of liquids and then lie flat on your back without moving for one to two hours. Yeah, right. I could also walk upside down on the ceiling while juggling seven hedgehogs and playing Rachmaninoff piano sonatas on the kazoo.

By the way, I was wrong about the first infusion being a half-dose. I was sure that's what they told me, but I was certainly pleased to learn that the second dose is the same as the first. Tom and Dana were there this time. Alway fun to see them.

Back to the fatigue: Sometimes I feel like I need to lie down every two hours. But I did the 9-mile hike, and of course remain true to my motto: If you don't feel like going out for a walk, you should immediately go out for a walk. Today for instance I did a double-hiller in the park. Although I felt fine during it, by the time I got back to the house I felt ready to collapse. I've discovered though, my motto notwithstanding, that it's best not to fight it too much. It seems ridiculous to lie down for a nap when I just had one two hours before, but it makes the fatigue manageable. Surprisingly, I'm even getting some good work done. Although I've been a total has-been in research the last few years, I'm actually writing a paper with my student (``The Duflot filtration in equivariant topology'', if you were dying to know). We'll probably submit it to a top journal such as Quilter's Corner or The Bass-Fishing Almanac. In any case, it's nice to feel I'm doing something again, modest though it may be.

The most exciting recent event was Mikayla Weissman's wedding. I could write a whole blog about that, but I'm running out of steam and will just say: Beautiful wedding. Beautiful bride. Amazing family. Amazing friends. Wonderful!

Friday, June 9, 2017

Pembro report: so far, so good!


My first pembro infusion was a non-event, as I more or less expected. I hope it continues to be uneventful!

Both of my previous Nurse Practicioners have moved on to other jobs, including alas Sarah the opera fan. The new one, Lisa, is not an opera fan (which surprised me because I thought this was a prerequisite for working in the urology clinic). Lisa has experience with pembro, although mostly with melanoma and lung cancer. She was very positive about pembro being a low-impact treatment. According to her, the most common side-effects in order of frequency are (1) fatigue, (2) dry, itchy skin, and (3) diarrhea. Many patients, she says, continue whatever they were doing before with no problems. Excellent! I can return to my plan of one-upping Alex Honnold, who's gotten a lot of press for his recent free-solo of the ``Freerider'' route on El Capitan. Oh come on, he rehearsed the route with a rope multiple times before going ropeless, and took four hours to do it. And it's only 5.12D, what's the big deal? My plan is to do it on-sight, at night, in under forty minutes.

The immunotherapy infusions are shorter and simpler than the chemo. First I go to the urology clinic where Deanna ``accesses'' my chestport and takes out a couple of gallons of blood for testing. Or maybe it was three teaspoons, something like that. At the first withdrawal she remarked ``oh, this is old blood''. Excuse me? Whose blood are you calling old! It's an hour 30 min. appointment, and although it doesn't take quite that long, it has to be done as a sterile procedure and that drags it out a bit.

Up in 8th floor southeast, I was disappointed not to see any of the old gang besides Rose. Tom, Dana, Glen, et. al. were all off travelling or otherwise enjoying themselves, the nerve! My infusion nurse was a new one (new to me, I mean) named Alyson. She's about my age, I think, and just got back from a bicycle vacation in Italy, in the region around Torino that we visited last September. She even speaks a little Italian, so that was fun. Like me, her first foreign language was French. After college she worked as a nanny in Paris for a while, and told me this story: In the US she often donated blood. Afterwards they give you a few crackers and a cup of orange juice. She thought ``why not donate blood in France as well''? So she did, and afterwards got a complete lunch with choice of red or white wine, followed by a sugar cube dipped in cognac.

The infusion part of the appointment was under two hours. They start you with a half-dose, then in three weeks decide if you can tolerate a full dose. So far, so good...

Had a great time at the Mariners' game last Sunday. Of course, it's always fun to be with the Brown family, but also we had great seats and it was a good game (2-run homer by Cruz, spectacular catch in left field by Powell...). It amazes me what a long attention span Kaia and Finley have for these games. For some time now they've both known how to read the scoreboard, and Finley keeps up a running commentary: ``It's looking good, guys! Runners on the corners, only one out, two balls and no strikes!''

In any case, there really isn't that much to report. No news is good news!