OK, just to catch up, before I retreat into watching a dumb movie:
The week after the zap I felt pretty good, all in all, despite having four sore bumps on my head. Eric left for Ecuador to see his parents and my mom arrived shortly thereafter (she picked up our car at the airport). We, meaning I, had lots of appointments of various sorts pretty much all week (Jesse had a few in there too just to make things interesting). So she drove me around a lot. I got very tired and a bit headachy on Tuesday and stayed that way until Saturday, when I realized I had gotten a cold. Sinus headaches. All week I conserved my energy and did my PT (30 minutes twice a day, or once if I went for a longer walk), walked, and sat on the sofa. It was rainy and cold so we had fires in the masonry heater. On Saturday we sprang into stop-motion action and accomplished a lot of household to-dos, separately and together, that were very gratifying. On Sunday my mom left and on Monday Eric came home. I’ve had a bit more energy since then.
Tuesday we went for chemo but my liver enzymes were elevated–not just a bit above normal but too high for chemo. Was it the 3 Sudafed tablets I took over the weekend? On top of everything else I am taking? Who knows. No one knows yet, but the plan was to come back Friday to try again. So this morning off we went, but my liver enzymes were even higher: over 3 times normal. That’s actually getting clinically relevant: my liver is showing some stress. So now I try again on Tuesday. I’m not sure whether that will be the second dose of cycle 21, or the first dose of cycle 22 after a truncated cycle 21.
Of course either way my chemo schedule is now awry, which means my May zap might need to be rescheduled by a week, but that would be 7 weeks of tiny-tumor growth, when the radiation oncologist was happy with either 4 or 6. Hmmm. I guess we could move it forward to 5 weeks.
And meanwhile we’re trying to plan a trip to France in late June that ideally will play nicely with my chemo schedule, which is…um…apparently never to be trusted. And Southwest, the airline of sick people (changeable tickets!), does not fly to France. 🙁 Of course in the end 10 days or so in France is worth skipping a week of chemo, mais oui bien sûr, but I’d rather not be gone for what would be two treatment weeks instead of one week being an off week. Chemo geek…yes.
I find this all very frustrating and a big bummer. Of course, behind all that is the worry that the liver enzymes are the first sign of liver metastasis. So far the cancer has hit 3 of the 4 most popular triple-negative breast cancer metastasis sites (lung, brain, bone) and guess what the other one is?
Meanwhile, in cancer-care technology, Eric got the radiology department to send him, overnight, on CDs, every CT scan I’ve ever had, apparently, because we want to try to 3-D print the mysterious lung met to see if a physical representation of it will help dispel the confusion around whether it’s a breast-cancer metastasis or a primary lung cancer (insert standard snorts of laughter at the implausibility of this here). And why not? Open-source software out there will help Eric (and Will, whose 3-D printer it is) convert the DICOM files from Albany Med into some other format and somehow help them figure out what to print and what not to print. I look forward to seeing how this process unfolds.
And also in technology, we pointed out to my oncologist a few weeks ago that there is now so much history of metastases in my brain that the radiologists who read the MRIs and write the reports can’t keep it all straight. They are going from the previous written report, and the narrative format means they miss things. For example instead of following up on a previously-seen “spot,” they forget to check for it at all. Or they call a spot “consistent with previously treated lesion” when it’s a new one, not a previously treated one. So we said there should be a chart or a spreadsheet. And he said, “You’re right, I’ll make one.” And when he was on vacation, he did! A sort of a chronological list with dates and locations and sizes without all the narrative hiding the facts.
So I took that and we are making an even more useful spreadsheet, so each met can be followed from discovery to ZAP and beyond (as it shrinks away). So much fun, this cancer thing!