This past three weeks has both gone past quickly and has seemed to last for a long time, but in a good way. First of all, the weather has bloomed into glorious summer and every day seems so unlike the days of the prior six months that they all appear to belong to a different life. Second, we have been in Washington for about a month, which is the longest interval we've ever been here. My daughter Caitlin and her daughter Lydia were here for a week helping us with painting and then they left and no one was here for a couple of weeks, and then Ed's daughter Mia arrived for a week's work with Ed, followed by her children and husband for an additional four days. All this involved about a month focused on summer visitors and their needs and our happiness at seeing them, and not so much on the medical stuff.
These were combined with the fact that Ed's last chemo round included a reduced dose of the 'big dog' infusion: the one that creates whatever big side effects you get. The reduced dosage seemed to be accompanied by even fewer side effects for Ed, such that it was easy--for both of us--to kind of forget about them and the medical world adventures almost entirely. Indeed, last Thursday, when Ed was supposed to go to the local clinic to get the blood tests to check whether his white cells were high enough to have chemo today, we both forgot about it, meaning we were left with driving down to Bellingham on the chance that the blood counts would be okay. But it seemed hardly reasonable to think they wouldn't be. He's feeling fine, he's got lots of energy, he's gaining weight: what could be the problem?
The past ten days with Mia here have been striking in their demonstration of how well Ed is. He works well with Mia anyway (their shared engineering background, not to mention DNA explains some of it, but some of it is just chemistry) and together they achieved simply monumental amounts of work and results. Not ten hours a day in the hot sun, or anything like that, but steady all day long planning and execution of (1) high physical demand jobs (including rebuilding a section of the roof on the orchard house) as well as (2) executive planning (how to identify, transport, and sort great quantities of materials that were arguably excess and get them transferred if necessary to some other place (say, the dump) where they might better live), and (3) creative/design work. Again, though, with all that work going on, it was hard not to have in mind that the work was the central thing in our lives, and in some ways, perhaps in most ways, that is true.
Anyway, today we drove down to the Bellingham chemo infusion center, combining it with a car visit to the dealer to address a rat-chewed leaking master cylinder and a salt-air chewed muffler in our Subaru. Multi-tasking all the way. And, when the lab tests came back, it was no go. The neutrophil count was .6, when we needed it to be more like 1.5 or maybe even 1.0. (The car, by contrast, got it all done: almost a thousand dollars of chewing-repair.) For Ed, they repeated the neupogen shot that they did three weeks ago for the last chemo and re-scheduled the infusion for two days later/Thursday.
(If you want to read about neutrophils, try this. One of the particularly important parts of the information is that the cells live only 12 hours, so it's hard to get them improved for very long. Neutropenia, which is low neutrophil counts, is a built-in effect of the chemo: it's toxic to the cancer cells, but it's also toxic to other quickly-reproducing cells which you need to live, like white blood cells. People most commonly think about hair loss and nausea or diarrhea as the big side effects of chemotherapy, but it is the neutropenia that is the centrally serious one. Ed has been lucky not to have the former ones, but he definitely has the latter one.
So, what does this all mean? Some suggestion from the doc today (via conversation with the nurse) that Ed may have come to the end of the use of the main drug, oxaliplatin. As I mentioned previously, we were told that few people are able to deal with more than eight infusions of this; he and Ed had hoped that by spacing them out longer (every 3 weeks instead of 2 weeks), the low white blood counts could be overcome. One of the infusion nurses today said that once the counts go down that low, it can be a longish time before they come back up, even without any further chemo. There is an alternative big dog chemo drug called irinatecan. And there's plain 5FU, with or without avastin.
So and so and so: it may be that the nature of the infusions will change. The research shows that no infusion (a long 'chemo holiday') is not a good choice if good quality of life survival is what you are looking for. But, we'll know more about that after this week. There's a requested email exchange with the doc about this question and an actual appointment in a few more weeks in addition to the re-scheduled infusion in two days. Presumably, there will be another CAT scan in August, and another CEA reading in the next few weeks.
In the meantime, though, life is good; actually, very good.