I totally suck at titles/headlines/captions, you name it. We’ve had this discussion before. As you can see, I obviously haven’t improved in the area and at the moment the post takes priority. (Those so inclined can argue amongst yourselves about how the header/content relationship impacts initial page views and overall return visits in other settings and report back to me later. On second thought, don’t. Just don’t hold it against me when I write about compiling in Fortran and title the piece “Godzilla Regurgitates Tokyo in Mothra’s Expensive Gamera-shell Suitcase!”)
Yesterday I saw the orthopedic oncologist so he could see how my dented ass cheek was doing. The hookwire grab at the tumor was quite nifty, I guess, and spared me an L shaped incision that would be 4-5 inches on each branch. I said, “Yeah, but man, that is a dent and a half.” And he apologized, which I thought was really sorta cute. The tumor looked like… well, like it probably ought to. They could tell that that was what they’d gone looking for.
See, here’s the deal: There are a bazillion ways from Sunday that you can look at things, and sometimes the easiest ones work out just fine and it saves time and effort (and money) if it works that way. So they took out the tumor and some surrounding muscle, flash froze some and looked at some right there and then sent the rest off for however it is they mount those slides. From the “right there” look they knew they had something that was consistent with the needle biopsies (aside from the fact he said it was clearly nodule-rific looking, which is promising all round. from what I gather). From the next phase of flow cytology, which involves separating cells, sizing cells, and running them under frickin’ lasers, looking for various types and surface markers, they found that there’s some type of lymphoma…
This is where the poor doctor looked all sad. I mean, he did. They couldn’t tell which one. And the surgeon, I gather, deals with other sorts of cancers — probably things like sarcomas. Or boneomas. I don’t know. Boneoma sounds friendlier than real osteo- sorts of lesions, though, doesn’t it? I mean, it isn’t the most usual thing to have a lymphoma initially appear in one’s butt muscle, and the lymphoma doctor is more likely to see it (alone, or in conjunction with other lesions) than the orthopedic guy. So because he was really all bummed out (he said this, irony noted) he called my lymphoma guy at Dana Farber (who I suspect is mildly amused, if not surprised, that that was what they’d found) and asked if that was… you know… usual. It’s all these lymphoma cells and they don’t know exactly what that all points to. He was really, really hoping it would be black and white.
The good news is: in cases with histories like mine, where grey is the new black, and even in cases where maybe you could expect more of a straight away answer, the first machine run cytology tests often aren’t enough to clinch what you need to know. Hence the removal of the whole tumor, and the freezing and preserving process. Because some poor pathologists get to sit and look at the cells under a microscope… stain for similar surface markers as well as possibly some new ones, and count the number of similar or dissimilar or conflicting ones in a given sample and plug that information into some sort of weird ass Cosmopolitan-Quiz-for-Oncology-What-Sort-of-Kisser-Is-Your-Lymphoma algorithm and see what comes up. It might be that a few candidates fit, too. I guess. At any rate, Dr. J at DFCI assured the surgeon this isn’t a loose end (irony noted again) and is more what they expect when someone comes through with something that’s not clearly a giant, swelly, pissed off, malignant lymph node.
I think that’s the thing: You always think of lymphomas as Hodgkin’s or Non-Hodgkin’s, and truthfully, no one can keep straight which one of those tends to suck more. But both of those lymphomas have multiple types (I think they’re trying to toss Non-Hodgkin’s as a term anyway, because there are so many more that are so diverse within the classification that it’s not saying much at all). Hodgkin’s has fewer subtypes, but I know the non-Hodgkin’s number in the twenties and thirties, and some of the subtypes there have other subtypes that look alike, but… are different enough that it’s a good thing to know what you’re dealing with, especially when it’s something that is happening at the age of 37. Not that it happening at a younger age is bad, good, or indifferent, I gather, but since I am younger than the average person with an indolent lymphoma (I can say this without reservation — although it happens enough that I don’t feel like a total freak), it is a really good idea to figure out as much as is possible, because these tend to be chronic things, not terminal things, even in an older population. So chances are good I’ll be chronic longer just based on my age now, and medicine changes fast.
Yes, that’s exactly why it seems like things take longer to diagnose nowadays, folks. Because we know more, and knowing more means that we can do better. Sad fact is, untreated it probably would take me out sooner than I think, but not in the next few weeks or months. We can afford that. Before these sorts of tests, I’d be… well, it’d suck a lot worse, that’s for damn sure. Because as much as it sucks, it can always suck worse. What’s up with that?
Dr. J at Dana Farber suspects that we might have a better breakdown by the time I see him next week. It might be we have enough to start moving, or that they need something more in terms of blood work (again, a baseline bone marrow biopsy is looming in my future either way, I think). No one wants to dig into my pituitary and I suspect (as do others) the lung nodule is incidental, or at least not worth going after in light of what we have learned.
I am slightly freaked out by how okay I am with this, too. I mean, yes, it sucks. I knew that. It feels wrong to feel relieved to hear that it’s lymphoma of any sort. But I could hear worse things. I told the surgeon this yesterday. I could have heard it was mostly normal, it’s probably nothing, and have it written off again (and again) as evidence grows that while some things are likely unrelated, a decent amount of these issues have a common bond. I could have heard it was something obviously, clearly, very, very bad. A carcinoma there would be… bad. It’s not a good thing, but there are all sorts of things that can ruin your life that aren’t lymphoma. Knowing doesn’t change that it sucks, but it changes how we approach it.
Because finally, dammit, we know generally what we are approaching.