More of the Same

Greetings from the SCCA infusion center, where I'm currently waiting for my very expensive drugs to be delivered, watching the screen savers cycle around on the nurses' computer, and generally being appalled by the fact the marketing department seems to have a more influence over the computer than IT.*

So what new things did we*** learn today? Not much.***** 

Best news: my tumor markers are down. Seven point something, which, if still outside the normal range, is way better than the upward trend into the high teens of my last few tests. 

Worst news, long-term health edition: my biggest tumor is even bigger. Not significantly bigger, but bigger. All the others are slightly smaller, but this one decided to expand. That said, all of them are officially categorized as "stable" since the changes don't amount to much.

Worst news, personal identity and aesthetics edition: no ink for me anytime soon. According to the oncologist, the Avastin lingers in your system for around six weeks preventing blood vessels from forming and preventing healing. So I'd need to be off the Avastin for at least six weeks before getting inked, and then would have to stay off it for as long as it took the tattoo to heal. And actually, I'd have to stay off it long enough for the tattoo to heal twice since the design I have in mind would take two sessions, with session one needing to heal before session two could take place. All of which is to say, the tattoo comes with a requirement for nearly three months off Avastin, the idea of which did not excite my oncologist at all.

And actually, I wouldn't be surprised if my medical record hasn't been modified to change my generic descriptor from "pleasant" to "possessing of misplaced priorities." This was the first time my travel schedule was identified as a problem, and the fact that I've not been on a standard schedule, where chemotherapy trumps everything else in life, came up a number of times in the conversation. As in, "Your trip to New Zealand isn't going force a delay of your infusions, is it?" And then later, "It's really hard to evaluate your body's response to the irinotecan without a set of stable time points to use as a comparison." 

To which I did not, but should've, responded, "Gee, I'm sorry if my need to actually live my life is getting in the way." One does not want to unnecessarily antagonize one's healthcare team. 

But I feel for him. I'm sure it is hard to figure out what's going on with me when you've got a five week gap in cycles here, and a four week gap there, rather than the standard three weeks, three weeks, three weeks you find with most everybody else. 

All of which lead to the conclusion that we just need to keep on keeping on, following the same treatment plan. In part, I think, because there's no good reason to do anything different, and in part because the oncologist is really hoping to get some results without too many variables affecting the outcomes. 

Fair enough.

And besides, my desired tattoo artist has a multi-month backlog, so she couldn't get to me until the summer anyway. Maybe by that time we'll have moved on to something that doesn't involve Avastin. 



* "Better care. Better outcomes. Better together." Oh, please. And what is with providers and their acronyms which generally communicate to me that way too many people spent way too much time rooting through a thesaurus so that the first letter of  the desired key words would spell out CARE or HEALTH or ART or SHIELD** or whatever?
** See the pilot episode of Agents of SHIELD, as previously discussed in this space.
*** Ah, the royal we. Always a useful indicator of either annoyance**** or false camaraderie. I'll leave it to the reader to decide which applies in this case. 
**** You know what else is an indicator of annoyance? Multi-tier, embedded footnotes. :-)
***** I didn't even learn my weight. The schedules were clearly getting out of whack in the clinic, so the LPN who took me back to my little room (thirty minutes after my appointment was scheduled) immediately ducked out to allow the oncologist to do his thing, promising to come back afterwards to get my vitals which would've been all well and good if I hadn't forgotten that she was coming back and so immediately left for the infusion center.