Wednesday, March 27, 2019

Out of order today.

Photo copyright Aji, 2019; all rights reserved.

Out of order today. Wings is hoping to have the butterfly concha belt done later on today, and if so, I'll post that then. If not, I have a back-up piece we can feature, but given where he is on it, it shouldn't be a problem, as long as the rest of the day cooperates. The plumber will be back, so who knows?

The jays, up above, showed up late yesterday evening, not long before dark. It was a nice way to end a very, very long, tiring, and painful day. When you have a medical appointment in Albuquerque, you always have to give yourself a good four hours to get there. You never know what you're going face when you hit town, and you could be stuck in freeway traffic for an hour waiting for them to clear an accident, or have three or four lanes funneled into one for construction. And so, we left just before actual dawn, and traffic was so light that we found where we were going and got checked in more than an hour and a quarter early.

Yeah. Ugh. Sitting around a hospital waiting room all that time, except NOPE. I apologized to the woman at check-in for being so early and explained why (where we had come from), and she immediately offered to call the radiologist and see if they could get me in earlier. In under five minutes, she told me they'd be coming for me shortly. I was already in and undergoing the procedure before my scheduled early intake time, and out about the same time I was actually supposed to go in for it. So, out of order yesterday, too, but in a good way.

It was a handsome young doctor who came to fetch me (he was the radiologist who would actually do the procedure), and there were two other doctors waiting, one a pathologist and one a student. Unlike with the last biopsy, he spent no small amount of time going over the what and the why and the how, making sure that I got any questions I might have answered to my satisfaction. The last time I underwent this (at a distinctly for-profit institution), the doc informed me that he would be doing three "passes" (that's the term for insertion of the hollow needle to extract the cells) to make sure they got enough material from enough places, then check the slides; if it wasn't enough, they'd have to come back for me. In that instance, he'd pronounced it enough, and we all know how that turned out. And now, thanks to yesterday's experience, I might have a better idea as to why. 

This doc told me that he would do a minimum of five passes, and no more than ten. That's . . . a lot, when you're having someone dig around with a needle in your neck, so I steeled myself for it. Better to get it all in one go than have to redo it yet again, and they take at least two samples for ordinary cytology readings, two for molecular analysis, and one for what's known as AFIRMA, a private, proprietary test whereby they send the sample out for in-depth genetic analysis (and one I'm unlikely to have done, because it costs nearly ten grand just for the test). It's used in cases where genetic variation is a factor is reading samples or in getting all of the available info needed to treat it, but it's also used in so-called "hard cases" like mine apparently might wind up being classified ("challenging" was the first pathologist's word, but the surgeon thought it was a misread or bad sample; after yesterday, it's sounding as though it may not be).

At any rate, the joke is that the lidocaine injection to numb it is the worst (it is and it isn't). This doc is far more naturally skilled, apparently; the lidocaine hurt, but not nearly as much as last time. Last time the various passes hurt, particularly the second and third, and but it was over fairly quick. This time, notsomuch, and I now know why, which might also be why there was a problem (if there was) with the earlier sample. The mass in my thyroid is in an unusual spot, not where you most often find thyroid tumors, and that's no doubt part of what contributed both to my high RADS score last time and to the analysis staking it out as one of two of the rarer forms. Positioning can be indicative in and of itself, but in my case, the tumor is buried deep, making it hard for them to get at it. That depth also meant that he had to do a lot more work to get the cells samples out. It doesn't sound like much, and in practical terms, it's not, but when you have a needle digging around deep in your neck (it's not simple insertion and extraction; it's insertion, moving it up and down repeatedly many times to get the cells into the needle, and then extraction) . . . yeah, that can get very painful, and as he explained to me, the lidocaine mostly gets the surface nerves. 

So. Five passes, with the slides getting stained and the pathologist already reading them to see how the samples were coming along and letting him know; he took a look himself at one point. Also different here: The doctor did both the ultrasound and the needle work; at the other place, the technician assisted and did all the ultrasound work. Then at the very end, the senior pathologist popped in to take a look, and it was already clear from the previous discussions that something was not optimal (I'm talking about sample quality here, not indications of malignancy). The senior path did some more reviewing and discussing, then asked whether they could get two more passes' worth. And when I say "asked," I mean exactly that: They explained to me in detail why they wanted to do it (i.e., to make sure there was enough of a sample, with sufficient spread of the cells, to give the surgeon all the answers he needs), but told me that if I didn't want them going in for more, they wouldn't; they'd work with what they had. That, of course, would be absurd, pain or no; I've had this done twice now, and I do not want to have to come back for a third round simply because they weren't able to get a sufficient sample this time around. (And, as it turns out, I learned that they normally don't like to do thyroid biopsies any more frequently than three months apart because of the trauma and swelling and inflammation it causes and how that can impair readings, but even though it had only been a month virtually to the day since the last one, everyone felt this needed to be done now.)

So. A total of seven passes, more than twice the number last time. The last two were substantially more painful, as I expected, in part because the timing of lidocaine injection was by now more attenuated, of course, but mostly because he made a concerted effort to get more material. I expected all of that, and it was fine, and frankly, I think had the radiologist in my first biopsy been tasked with yesterday's, he would have caused me far more pain than this doctor did; this one, young or no, clearly has an aptitude for this sort of work, with movements that are smooth, conservative, gentle, and quick all at the same time. 

I also, in the course of yesterday's discussions with him, acquired another bit of information that might have bearing on the issues with the earlier sample. He specifically asked me not to swallow during each pass (i.e., from the moment the needle goes in to the point when it comes out), and that made perfect sense to me, because why would you want movement when you're trying to get a lot of information out of a very small, tight space? Except . . . during my first biopsy, that doc explicitly, affirmatively asked me to swallow several different times. So when it was done, I asked him what might be the reason for the difference. He said that it might have been an issue of specifically wanting movement at a certain point to see how the tumor itself moves in relation to the tissue around it. Or . . . as he said, my tumor is very deep. Having a patient swallow under such circumstances creates a shortcut of sorts: It pushes the tumor upward so it's easier to reach. The problem, he said, is that it also places it right up against the carotid artery, and he doesn't like to do that, so as not to put the artery at risk of a nick with the needle. Needless to say, I felt a whole lot better about the extra investment in time and pain to do it this way.

The other thing? They wouldn't take our money. We tried to give it to them, and they told us they have no facility for that; I'll be billed, and I can just send payment in when I get it. They sent me on my way with a bottle of water and an ice pack, and I sat for a few minutes in the waiting area before we collected our things and went back to the parking garage. We stopped off at Whataburger to get some lunch (yes, I went off my diet long enough to have part of a chicken sandwich and a few fries), and then got on 25 and headed for home. They tell me the basic cytology will be done within 24 hours, meaning today, although I probably won't have access to the results yet; the molecular, within three days, so by the end of the week. It'll probably be the first of next week before I hear from the surgeon, at a guess. If they have to go the AFIRMA route, that's about two weeks for analysis and results, but I'm also guessing I'll hear from them before they send that out, because the cost of a thyroidectomy (not all the costs that accrue during the surgery, just the extraction of the organ) is apparently less than the cost of the test. But I will have some bills coming due soon just for these elements of it, and meanwhile, we wait.

So it all comes down, as always, to money. We're still paying off last year's taxes even as I'm spending this weekend buried in this year's. I'll have another bill coming next week for the second biopsy, and then another bill (or maybe two) for the reading of it. We have no answers yet, including no answers as to what almost killed me twice 16+ months ago. And whatever the outcome with this, I still have more testing to undergo related to that. Next goal is paying off the hospitals from that mess, which comes to more than $30K just between the two of them, and they dun me daily, so here are the links:
  • My Patreon, The Interstices (Writing Between Worlds) (and if you subscribe today you won't be billed until April 1st for March);
  • Wings's site, for sales, with lots of new items posted;
  • Wings's direct PayPal link;
  • A way to buy me coffee (which actually goes to all of our medical bills, which continue to mount);
  • Amazon wishlist, which mostly consists of animal and household stuff, with the kibble back on it; we gave several of our existing bags to a local disabled vet with a starving rescue dog who needed the help;
  • Partial registry #1, from Bed, Bath and Beyond. I've added two or three new kitchen-y things on it now, stuff that I didn't realize we'd need.
All we want, to be able to have some confidence in making it through the whole year with whatever they're going to find going wrong in my body, is to make some sales. That's it: sales; nothing else. The stress is constant, and it's telling. Good vibes for Raven are needed today especially (he's still hanging with us, and I need him to be safe while we're out). But we all could use some, too, me most of all. We all could also use some help with sharing Wings's site (and testimonials, if you got 'em). Thanks.



All content, including photos and text, are copyright Aji, 2019; all rights reserved. Nothing herein may used or reproduced in any form without the express written permission of the owner.

No comments :

Post a Comment