Today a long though productive day in Bellingham featuring an appointment with Ed's oncologist, a visit to the Infusion Center for the Avastin treatment, and various and other Bellingham stuff of a more household nature. The doc visit was for the purpose of his assessing Ed, which he does every six weeks, and Ed assessing the doc and his views about the rising CEA levels and the possibility of re-starting some kind of chemotherapy regimen.
This is a decision point that I certainly remember puzzling about frequently in my bioethics days: how does either doctor or patient have a reasonable position on beginning therapy when there is no reason, really, to think it would obviously be a good or a bad idea, but there is the fact that at least it would be doing something. And ought one not be doing something in the face of a serious/terminal illness that is progressing, even if slowly???? Isn't it the fact that no treatment at all for stage 4 colon cancer has an expected 6-month survival? (Yes, it is, but Ed is being treated with Avastin, just not with chemo.) The power of doing something is considerable in my experience.
The facts: the CEA continues its slow rise, but this time less sharply than the last two readings. So now we are at 8.3, up from 7.5 three weeks ago (but up less than a full point). What does this mean past the obvious meaning--that tumor activity is slowly increasing? That was the first question we were trying to get a handle on. Did this constitute 'time to progression' which the study we were largely relying on right now for guidance used as one of its end points (that and survival). Had 'time to progression' been reached as soon as the CEA returned to above normal? (Which was within a few months after stopping the chemotherapy and going on only with Avastin).
The answer to that was encouraging, sort of. Time to progression means '25% increase in tumor size or in number of lesions.' But you would know that only if you did some kind of scan (CT or PET), which Ed hasn't had since September. Thus, if there is some idea of returning to chemotherapy, then we would need some idea of what the current tumor picture looks like. It would be very unlikely that it had increased dramatically if the CEA were rising at this low rate, says the doc. In fact, said the doc, if a CT scan showed that things weren't much different from what they were last September, then he would think re-starting chemo was not a good idea.
Ed is kind of inclined to think he should try more chemo; I am kind of inclined to think no (largely on the 'don't borrow trouble' theory). But, the resolution was that he would have a CT scan, which was done immediately after the infusion therapy today. (This was undoubtedly a function of the fact that the U.S. has too many CT scan machines so it's easy to get on the schedule.) We won't get the results of that for about a week. But it will tell us something. Doubtless something that makes everything not entirely clear about what to do next. But it felt like a plan, or as near a plan as these medical visits tend to have on offer. Not their fault: the nature of the beast.
It's been a long and dreary winter and I think our fussing about this issue at this point (despite the fact that Ed is feeling well, that his liver function tests are showing good numbers, that his blood tests are all good, and that he continues to have no symptoms of anything) is in part a function of that. It's one thing to live in the moment in the summer and fall when the moment is really quite good. But in what has seemed like an endless winter, living in the moment sort of feels like it will always be grey and wet and cold and windy and constrained. Not so good. We have both struggled off and on with some feeling of non-stop dreariness, even as we have continued to work on our work (ed's computer, photography, and building; my quilts). The medical lack of clarity overlaying this unusually bad weather is not helpful. So, we are hoping that the CT scan will provide some clarity.
Although, although, we are aware fully that conducting one test almost always begets the need for another test because the first test usually shows something, but not quite enough. The CT scan will tell us something about tumor numbers and size, but only a PET scan would tell us whether the tumors are active (but the PET wouldn't give as good information about numbers and size, would be more expensive/invasive/more-of-a-big-production, and, strangely enough, would create a border crossing problem because it is nuclear medicine and the borders immediately detect anyone crossing with radioactivity: that will win you a 1-2 hour extra exam in the Border Crossing Lottery, even with a medical certificate explaining the situation; and if you cross into the U.S. twice, as we would do in a round trip from P.R. to Bellingham, we could win TWO 1-2 hour exams.)
On the other hand, today was a beautiful spring day, we were out on a day-long trip, we seemed to be clarifying a plan, and we picked up our new washing machine at Home Depot just before returning to Point Roberts. Maybe we are reborn, yet again, in time with Spring and Easter and all that jazz...