I have this really crappy suspicion that I wasted the hema-oncologist’s time yesterday but seeing him was the surgeon’s idea, not mine. So either they got different pathology reports, or the surgeon was unclear on what it meant, or something… but if I’d known that basically a second opinion meant the oncologist read the same damn path report, I totally wouldn’t have wasted his time — or hell, you know it, far more important to me at this point, my time.
I do hope that the oncologist realized that I wasn’t there on my own volition. Lots of times I get referred places in a tizzy by someone for things I know damn well are not emergencies and it comes across as though I am overly anxious over the situation. Okay, fine, I am ready for this situation to end. I was ready years ago. But I already have a rap sheet twelve inches thick full of crap that was speculated (or misconstrued thanks to medications used off label that no one bothered to ask me about two years after I stopped taking them). The rap sheet should only be about six inches thick (I know, right?) and believe me, the length and tone of that history goes a long way. I don’t need yet another “patient is distraught” thing on the record. I am distraught, but not because I think there will be any particularly dire pronouncement. It’s the distinct lack of pronouncement in light of it all that freaks me out.
So I didn’t do too well considering the first new specialist I see after this whole shebang says, “It might all just be coincidences and unrelated.” I would agree that it might work out to be a disorder with a pan- , overlap-, -mixed or spectrum designation or possibly two disorders converging (I have always had sleep issues, and always had autonomic nervous system issues to some degree. Not this bad, and aging does not account for the nature of it all). I am a big fan of stuff just happening. It’s idiotic to me to question what brought this on, what made it happen now… It doesn’t matter, if I knew it’s not like I could undo it anyway. Stuff happens. But this sort of stuff doesn’t happen all independently of each other. There comes a point that you have to wonder if all the individual weird things that happen that can be attributed to the same sort of underlying disease processes or just exist all by themselves in otherwise healthy people might indicate that the person coming into your office with many of them, often, is actually ill.
The kicker is… He was so nice. The staff there was so nice. I mean, if you have to go through shitty chemo or, hell, if I end up having to get shitty infusions of immunomodulators at some point once someone sorts it out (because somebody will), I really can’t think of a bunch of nicer people to have handle it.
I was hoping he’d have some insight as to where to look. He didn’t. He called one rheumatologist I saw… a decent guy, but rheumatologists seem to love joints and blood tests.,, oh, this guy is pretty keen on x-rays, too. He concurs this is all weird, but it isn’t rheumatological (which of course doesn’t mean it isn’t an immune system issue. But given my history, viral infection and systemic overreaction seem unlikely. And the first commenter with a Lyme suggestion will be burned in effigy only because I am too tired to break out my real life flame thrower, I mean it. It isn’t Lyme. Trust me.)
The joints are the least of my issue, and removing my thymus might help, but even when it has helped people in the past it has taken a few years at least to even be noticed (removal did help immediately with some pressure on trachea issues, which is funny because sometimes huge ones displace, and smaller ones put pressure on things more — I can’t imagine the chick I read about who had a 17cm one didn’t have pressure and displacement in one neat package, though). And while it was merely enlarged and had stupid looking hyperplastic b-cell follicles, it wasn’t tumor — that’s good. But it was enlarged, not merely hyperplastic, and I don’t have myasthenia gravis, and even people with MG and an enlarged thymus who respond to a thymectomy tend to be partial responders. Then, you can’t speak badly about taking less medicine in any case. But the upshot for me is, even if it helps… I have waited too long, and the chances are good the damage is done.
But remember I said the oncologist was nice? He was. Which made it easy when I had to get completely freakin’ emotional over it to not sound like a raging harpy. I just sounded like someone who is sick to death of the situation. It was funny, the office admin said that it must be terrifying to not know. I mean, it is, I guess, but fear loses the edge (except once in a while, when things go bad, quickly, but that has only started happening in the last two years, and fortunately isn’t an every month — or two, or three — occurrence). Fear is crowded out by the ever present and far more mobilizing annoyance. I. Do. Not. Have. Time. For. This. The longer this takes, the longer this earth is deprived of my freakin’ wonderful awesomnity. and that is a crime against humanity. The world needs me. I make the sun come up, and you people are in big friggin’ trouble,
The oncologist is going to speak with the pathologist next week and see exactly, for my information, what they looked at… and what they might be able to tell with further testing of what they have. He is nice, I told you. I would like to avoid any more pin pricks, hole punches, or incisions the surgeon could fit an IMAX camera through if possible. It might not be, but I have this odd feeling my blood is never, ever, going to give up any clues. That might be one in and of itself.
I feel bad about it though…Oncologist said as I have a good relationship with my GP (and I do… I feel like she must think, judging by frustrated rants that she bears witness to, that I think she has or could do more. I am impressed as hell she’s done so much, she is really is a hero and I wish every last doctor out there even half met her standards.) we should work on managing symptoms. I have to laugh. Like… you know, my sleep doctor does, and he and I both take heat for from other specialists who swear that they know better? I am tickled that when I left a city rheumatology clinic they were thrilled because the sleep doctor was doing a wonderful job keeping that end of things in check. Yep, that was the same clinic that last month wrote the same doctor about the same sort of regimen saying that it was the entire reason I was all messed up. Nope, sorry, patient was in flames when I arrived, sir… You guys had her last.
I think symptom management is impossible for a few reasons — they vary in intensity and frequency, and all medications have side effects. My sleep doctor has indicated a few times a little wiggle room upwards is possible with the stimulants. I really don’t want to — not because I think they are contributing to the problem at all, but I don’t think that little bit of wiggle room is worth the flak we’ll all have to take for it. Medication (and physical therapy) tend to require a diagnosis to be approved (actually, PT requires one to enlighten the therapist how to handle the problem). They don’t know what my problem is.
I have said before I don’t care if it has a name. I really don’t. Or two names. I don’t care. I do need to know general mechanisms (that’s why my diabetes insipidus is so hard for doctors to believe was correctly diagnosed — no, no head tumor, no, no head injury, no medications prescribed that cause it, and no, I am not just drinking lots of water because I love our completely 1950s looking bathroom. It’s just not working right and I wish to hell we could change that idiopathic to ‘attributable to”‘ something soon). If I know that it’s immune related, or hell, viral, fungal, genetic, we can try to stab at the roots at least a little. Stuff just happens, sure, but there is reason to tie much stuff that is happening here. And I know damn well I’m not the only person who has what it is I’ve got going on. Maybe there’s only four or five others, maybe there’s five hundred — it isn’t an everyday thing. But I will find our why, and dammit, the reason will have nothing to do with that one 8 0unce glass of Diet Coke I have per day.