First Round

[Ed didn't read this till Thursday morning, so his edits are in bold.]  The description we received from the oncologist was a 2-hour infusion session every other week.  And this morning we began this at 7:45 a.m. when we drove down to Bellingham for a 9 a.m. appointment.  Today's nurse is named Kateri (as in Leonard Cohen's Beautiful Losers, for those of you who remember that particular book from back around 1966, -67; she was beatified in 1980, which would have been about the time that today's Kateri was born).

The infusion center has about a dozen alcoves (for lack of a better word), each with its own leather-ish recliner chair and pretty much all the chairs are occupied throughout the day by someone getting chemo.  Ed was seated in one of the more comfortable chairs (we later were able to find this out as a result of others coming and commenting that the 'comfortable chairs' were already in use).  Kateri began by showing us a schedule of our next two months in chemo world.  A little overwhelming, let me tell you, to someone who was still under the impression that most of their life was their own.  But, more of that later.

And then she explained that we'd be there a little longer today because of many factors that made the '2-hour infusion' description seem, in Ed's words, like 'bait and switch.'  It started with a bunch of anti-nausea stuff (which Kateri repeatedly referred to as 'the nausea drug', including an infusion version of one that will subsequently be given in a pill form, one a day, for the first day of the infusion, as well as the two days subsequent to that.  These pills cost $100 apiece and are nondescript, although fairly large.  [When we picked up the next 3-pack of these at the pharmacy, they were billed at $150 each and, Ed says, when you take them out of all the packaging, they are just regular sized pills.]  So there was about an hour of that.  That was followed up with 90 minutes of Avastin (a monoclonal antibody that interferes with tumors anywhere developing their own blood vessel attachments and costs $7K per infusion).  In subsequent sessions, the Avastin infusion will last for only 60 and then 30 minutes.  So we're already at 2+ hours and no chemo yet.

Next, an hour of Leucovorin and 5FU.  And after that, a half hour of magnesium and calcium, an hour of Oxalyplatin, and another half hour of magnesium and calcium.  The minerals there are thought to have some potential to reduce the neuropathy that is a side effect of the oxalyplatin.  Which gets us to almost 5 1/2 hours of Ed's getting to sit in a comfortable chair while being infused.  [Ed says I have the grouping/ordering partially off, so don't use this as a recipe for your own healthcare.]

For the last half hour, they got the portable pump installed, which will provide him with 46 hours of 5FU.  And then they taught him how to flush the line and showed me how to remove the line from the chest port.  (Ed can see the device to flush the line, but the chest port is high up on his right shoulder and more difficult to actually see, which is why I get to do that.  Be assured that it is not because I am better at mechanical things.)

So that's what actually happened.  Then, at 4 pm, we got in the car and drove back home.  He found it difficult to sit still for so long; he feels a little fuzzy in the head at the moment, and has gone out for a walk to see if some exercise will help that.  But he has had, as yet, no other effects from it.  He's still got 40+ hours of 5FU infusion, though. [Returning from his walk, he reported some tingling in the fingers which is a sign of the neuropathy side effect.] I overheard one of the nurses saying to someone that the first and second sessions often pass without much problem, but that the third one tends to produce more difficulties.  Well, we will see.

I spent most of the time at the center with him, but also tried running some Home Depot errands (not particularly successfully) and stocking up a little at Trader Joe's (successfully).  Bellingham has a lot of traffic, a lot of cars, very long stop lights, and lots of buildings.  Even without the chemo, one could be forgiven for being tired out by all that. 

I'll write more in the next couple of days about what it was like being there and about this schedule in which they seem to think we have nothing to do but drop down to Bellingham to have them do something or other.  At the moment, the major issue is they can't get a doctor visit and an effusion  infusion visit scheduled on the same day.  I proposed that one round, Ed goes down to Bellingham to see the oncologist on a separate day from the infusion visit,  and the next round the oncologist comes up to Point Roberts to look at Ed on the day before Ed goes down to have the infusion.  My guess is that the oncologist's time is way too valuable to be coming up to Point Roberts, but that Ed's time lacks that quality in their view.  Scheduling is difficult, I know.  But then, that's why you have to make special efforts to make it work.  I also proposed that Ed see one of the oncologist's partners on the same day as the infusion, but that was also not possible because Ed is not the partner's doctor patient.  Presumably, if he's good enough to be his partner, he's good enough to do an appropriate physical exam, but I'm not in charge here.