There Has to Be a Super Power Here Somewhere….

You know, the X-Men were all tortured souls and that sucks and all, but at least they could sprout blades out from their knuckles or control the weather… Notice they couldn’t get Professor Xavier out of the wheelchair? (Then again, they couldn’t do a whole hell of a lot about the crappy aspects of those mutant powers.)

When growing lumpy bits and getting car sick and peeing and sweating all night long to the point that if I don’t get up and have a glass of water after four or so hours means I’ll black out at hour five becomes a way to save the world, call me. Until then…

So here’s the thing. Saw the ever patient Dr. J who is going to ring for my past chest CTs and, more importantly (well, actually, probably not over the long term, but I don’t think it was ever evaluated correctly) my past brain MRIs that are in hard copy form and compare the latest. I think I lied when I said I wasn’t told how large the pituitary growth was. I think Crazy Eddie may have said 3 mm or something. Maybe not. I know this time it is a 4.5 x 4.5 mm growth, which would be bigger, but… Honestly, these things are not necessarily the freak out fests that you’d think in many cases. I think 6 mm is where they freak. I think smaller ones tend to be symptomatic and dangerous (and not found in the area mine is located, so probably that is irrelevant information, even if it’s generally correct) and growth at a specific rate and time of life are what makes them go hmm. I know this is not congenital. It is new as of 2009, I guess, at least. It may be a hold on and wait thing though.

Why? Because when isn’t it? I mean, here’s the shitty part: There is nothing they can do right now. And it’s true. It’s not a blow off, and at least it isn’t like we’re going into the next phase with me being written off as a freak (okay, a freak of nature, but I’m at least documented as freakish).

Dr. J suggested that maybe my sweet GP or a rheumatologist might have new ideas… And I said, “Have you… I have had so many of the normal and unusual rheumatological works up done that given my age and gender, I should have at least had one false positive. I haven’t. I have had so many Lyme tests, I’m sure that Harvard Pilgrim must think I live with a herd of white tailed deer. These tests aren’t bad, but aren’t always right — but my understanding is they generally do false positives. I can’t even flunk an antinuclear antibody panel that the lab has completely botched.”

I also never, ever have any signs of inflammation. Okay, sometimes my platelets are high. A little. And that’s about it. At the very least, I don’t think anyone has a clue what will work, because if he’s reluctant to try chemo (and I think this is probably a very good thing) based on that crap, no rheumatologist will try any other immunomodulator — I guess because they come down to being the same damn things.

Of course I’m guessing that if I had malignant cells (clearly malignant, not the atypical/not quite malignant ones that they saw in the biopsy in evidently pretty good numbers) previously, they wouldn’t hesitate. Or at least maybe there could be a justification… but since chemo wipes out all cells, the fact that I have atypical ones that gather where they shouldn’t doesn’t mean it is killing bad cells with good cells, it’s just going to knock me down and probably leave me in the same spot. At the moment.

He did mention the possibility of biopsying the pituitary at a certain size. Yeah. No. Nobody goes in there unless the damn thing is cutting off circulation. It’s a rule of mine. And the lungs are likely not to show anything (of course, neither is the pituitary. If it comes to that, I’m going to argue we do some educated guessing and nuke the bastard. Why is that better than a knife? Hell, I don’t know. I just don’t want the damn headache afterwards. Is that stupid? Seriously, I don’t want the headache.) I know it’s not that large, though. I do suspect it is growing.

I also told him I kind of was getting to the point I didn’t care. And I realize that for someone who writes, I should know to be more careful about what I say, because what he thought I said wasn’t at all what I meant. So then came the lovely question (which at least was a valid question given how I said it, when usually it’s just asked because the doctor wants to pass me off) as to whether I felt suicidal.

And I hope Dr. J isn’t offended by what I think I said… I either yelled “Jesus Christ, no!” or “Motherf—, is that what– No!” And then I hope he wasn’t offended (I know he wasn’t, although I told my sweet GP this once I knew it made her weepy) that I clarified, “I mean I won’t come seeking medical help at this point. Nobody can do anything, and if I only have five minutes a day that I feel decent, I don’t want to spend it here, doing this, getting nowhere. I want to do something that is at least worthwhile.”

So it’s odd, too. I lost it last year in the first oncologist’s office. He was nice enough and all, but hearing that the thymus thing was “probably incidental” (fortunately, the pathologist informed him it probably wasn’t, and what do you mean no one knows what’s going on?) sent me off the edge. And boy, do you feel like a jackass leaving a cancer center in tears because you don’t have cancer.

I haven’t lost it in an appointment since — Mr. Shoe, another story entirely. He is doing the relief work in the water department this year I think.  I just can’t. It’s not that I don’t feel it. It’s just not worth it. It’s not worth the snot and the sinus headache and the fact that… it’s energy I don’t have. I feel it, trust me. Best that happens is a wobbling voice. I don’t have the energy to push the tears up. And they don’t do much except leave me with a wad of kleenex that I can’t find an appropriate place to chuck out come the end of the appointment.

For some reason, crying made me feel like a weak hysterical woman in an appointment. Not crying makes me feel like Hannibal Lechter. I can not win.

So here’s the plan forward. I see Dr. J in two months, I guess cause… he feels pity. Heh. And I’m getting a pulmonary function test, but a decent one. One where I walk, run some steps, and they check my blood oxygen and shit too. Because… that’s a problem. Dr. J urged I exercise more, it might help…

And I gave him the look. Yes, I will, because the gauntlet is now thrown, sir. If this is what it takes, it is what it takes, and I hope you’re right and fixes things, again, and I do enjoy it anyway, but I fear that it’s not going to help much.

So then came the amendment, “Okay, well, it can’t really hurt.” This is true.

I walked on the treadmill, learning that really, I am just short of breath. That’s all. I was more short of breath pulling on my socks after my shower. I get more short of breath when I laugh. I am at least not that out of shape. And also, I push myself too hard. I think it might be mildly obvious I have this tendency when I consider advice a “thrown gauntlet.”

I told Dr. J, and I believe it… I am the weakest link here in getting things taken care of. And the pisser is, this is just going to be whack a mole and watching. And I will feel shitty. A lot. And depending on moles being whacked, I might feel shittier, and only get back to the present state of shitty. But if we find as things bust that some things help and I qualify for the stuff that might make life easier — part of the reason for the exercise portion of the pulmonary testing is to see if supplemental oxygen might make my life easier — maybe it won’t suck as much in places, and I’m taking what I can get.

So I see him in two months, though he said that he will have them go over the MRIs especially. I told him I was slightly paranoid as it was missed twice, and even the first MRI the neurologist who spotted it wasn’t so sure what he was seeing. Not that it matters but to document how fast things are changing, if they are changing… Because I really don’t want them digging in there. Headaches, you know. Nosebleeds, too, I bet. And still probably no really explanatory anything. Because no one knows why this crap happens.

Like hiccups. No one knows why those happen either.

In other news, my blood tests… Lyme was negative (shocking, as I write this lying in the reeds beside my white tail deer family), thyroid was actually a little low, but I guess not a concern (again, why do they order blood tests? I know that one is a fluctuator depending on time of day, though. Don’t know if it is considered with result reports) and B12/folate were fine. Know what else was fine? Vitamin frickin D. Fine. Trust me, I have not been taking the horse supplements. I have not been taking any supplements. I am as pasty and white as ever. And I still don’t drink milk. So… Somebody’s lab was broken. (This test, and the Lyme, were sent to two labs I think… I guess that’s the rule most of the time with Lyme, and some labs have been erroneously reporting Vitamin D deficiencies — big ones — for years.)

Who’d have thunk it? Me. I’d have thunk it. And remember, if the world can be saved by car sickness and night sweats, send the signal.

 

This entry was posted in Getting to the Point, Langerhans Cell Histiocytosis, Living with, The Bad, The Ugly. Bookmark the permalink.

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