No Real Information Makes Librarians Unsettled

Hey, I haven’t said much lately, eh?  The bad news is it wasn’t because I was vacationing in an exotic locale. The good news is it isn’t because I was completely in a coma.

I have learned a lot through this ordeal of apparently being somewhat biologically different than most humans. One is, doctors are human, have bad days, and make mistakes. That’s completely excusable. If one is consistently an ass, however, that’s a personality fault and I sure as hell don’t need to deal with it. I learned the difference in tone when things that “require patience” are discussed — sometimes it is very sincere, but more often it’s a “I don’t want to deal with it, go see someone else” situation. I always thought this would be really clear once it was behind me and I’d think, “How the hell did we all miss that?”

Nah, I don’t think that’s going to happen. I think it’s gonna be very understandable why it was missed.

I at least know some of the pathology report results. I don’t know if it was all back when I saw the surgeon last, but enough of it was to know enough that would make me frustrated beyond belief to look up much about it because it could go in many different directions. Hey, look, I’m a librarian. I look stuff up.

I would have asked for a print out, but truthfully my eyes kept going to the last line of the report on the surgeon’s screen which clearly indicated all that stuff that was in my head had not fallen into my chest cavity and lodged in my thymus was distracting me, so I didn’t ask… All I could think was, “Holy… what the hell does that actually mean?”

It means in the mid range future, at least, what my surgeon said in the very appropriately sincere tone, “We need to wait and see.”

Oh, and I also get to see a hematologist/oncologist next week. I am gathering that there is not a real pressing concern that it is cancer, per se (I am also thinking there are Cancers and there are cancers, and if I have one, it’s the lower case c variety.) The cells they saw in huge, abundant and a little larger than life amounts are associated with indolent lymphomas, and with autoimmunity — and some sorts of autoimmunity that aren’t… well… too different than cancer when it comes to behavior.

I also realized that I think why I am worried at all has a lot more to do with other people’s reactions than what it actually is. I can’t change anything about what it is unless I know what it is… And at this point, believe me, I know cancer doesn’t always have to end badly and that autoimmune disorders can make life miserable and take you out just as well… I know that they all have varying degrees of success, that no one gets why or how and that basically the idea of a prognosis is kinda a load of bull. What matters is knowing what’s going on, and dealing with it the way it needs to be dealt with.

I also know I am coming from a slightly different angle than many people.  I know when we do find out, I’ll be completely wrecked no matter what it is for a bit, but that’s just how it goes.  I’ll probably even be mad at myself for being so upset, but c’mon.

My biggest fear still is that the hematologist/oncologist will just say, “Nope, not cancer” and turn me out on my ass again. I am tired of this, and either my thymus was infiltrated by these cells that shouldn’t have been there, or they grew on their own volition which is really not right either… And since my thymus was functioning as it should (that is, doing nothing, except harboring these little b-cell follicular bastards) my immune system has learned its dirty habits and either has it in for me, or for itself. And I will keep on, because now there really needs to be an answer.

I am not sure he will. The surgeon asked if I had a preference for an oncologist (um. no, I guess, and I suppose that’s a good thing?) and the surgeon is very much aware of where I’ve been, how little anyone knows about immunity, and how hard it is to sort out, and referred me to the doctor I’m seeing. I’m getting this weird feeling, even if it isn’t cancer, that I’m probably going to be under the care of an oncologist/hematologist for a while. There are odd crossover disorders that oncologists and hematologists deal with that are pretty much autoimmune, but they’re kinda like cancer, too… and many times, organ involvement with immune diseases are smacked with chemo type drugs.

All I ask is that we know as much as we can about what it is, and that the people treating it know what the hell they’re doing. I will do my best to take it from there.

A side note: My diabetes insipidus went freakish after surgery (I was suddenly making buckets of antidiuretic hormone all on my own) and Frank the bunny the endocrinologist thought it was intriguing how long the inappropriate and random secretion of ADH was lasting. I am finally back to where I have to take a desmopressin at night, but it’s still longer than I think they would imagine… I had my other really awesome endocrinologist (I don’t know, some specialties attract pretty cool people. Endocrinology seems to have a decent number of actually personable doctors) send her my records surrounding the diabetes insipidus diagnosis. It can be an odd one to figure, and she feels confident that the original testing was appropriate and the lab results were reliable. And as much as central diabetes insipidus is merely just a pain in the ass, it’s one that’s always questioned by other doctors if there’s no head injury or pituitary tumor, and probably is a piece of the puzzle. So knowing it all seems very kosher is cool.

Meanwhile, I wait, knowing that searching for information will just lead to wasted time and too much speculation. But dammit, that’s killing me.

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